POZ Community Forums
Main Forums => Living With HIV => Topic started by: leatherman on March 02, 2008, 01:21:07 am
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I started my own blog 10 yrs ago, to keep my family informed about my life and because I've always got stories to tell! ;) I'm usually pretty honest about my life and thoughts, and post without censoring my stories. I've only fudged some about how sick I've been at times to not worry my mom too much. (Oh, and I never mention the pot smoking either, although that's been part of some funny stories. My Baptist mom would freak out! LOL) However, I'm in a situation now that I can't post because I really don't want my mom or my partner to know how worried I am or all the "bad" things I've been doing.
So I thought I'd post here. Maybe just to vent; maybe to get some feedback (on the bold-ed section below). At least I feel you people here can understand some of my dilemma. ;) So if you've got a few minutes, have I got a story to tell you. :D
I was out running errands in the snow the other day and got a good adrenaline rush. Coming back home, I'll admit I was going a tad too fast for the slick, snowy, slushy road. The car slid to the left some; the car slid to the right. The spinning wheels couldn't get any traction and, before I knew it, the car (my partner's car, I should add) had spun around and was ass-end up in one of the neighbor's front lawns. :o
That seems a pretty good metaphor for the way my life is going right now.
About a month ago, I reached Day 105 of NOT smoking and everything seemed fine. But then I took a trip from Oh to SC (an early bday present) with a friend that smoked some (not a heavy smoker at all though). Returning home, as we sat waiting to get through a tunnel in VA for an hour and a half, I got really bored and tried just one. :-[ It wasn't too bad. Matter of fact, it gave me quite a buzz! :o After crossing back into Ohio, the rest of our trip was spent going 10 mph through a white out - a freaking blizzard! The normal 2 hr leg through our home state took nearly 4.5 stress-filled hrs. making the 7 hr trip home into an 11 hr trek. Oh, and I smoked another half dozen cigarettes.
I might have been ok then; but I came home to a rather distressing situation. My partner (who's neg), who we thought was over the flu a few weeks ago, was quite sick. The flu was odd enough as he is usually healthy as a horse at 51 yrs old. (He's actually been running a low-grade fever for about 14 days now, making him officially "sick" for a month.) We've been to the doctor's a couple of times and they've run blood tests. StatCare claimed a low white blood count probably meant a viral infection, while the GP's more extensive blood work pointed to a bacterial infection. They're pumping him with antibiotics now and hoping to get a handle on whatever is making him so sick. During these last couple of weeks, I've been smoking about as many cigs as he has had spikes over 100 in his temperature. (about a pack of cigs a week matching his 20 spikes of fever)
Unfortunately, my partner's sickness is like deja vu all over again to me. I mentioned in another thread how my late partner's seroconversion probably occurred when he spent the month of Sept 94 running a low-grade fever and was quite ill. (That illness led to me finding out my poz status in Dec of that year.) Even though I had a "mystery fever" myself just two Valentine Days ago, my current partner's fever seems oddly similar to that other fever yrs ago. And I was sure I was going to freak out when I heard that StatCare doc say "viral" infection! Although my current partner is no where sick as my late partner was in his last days, caring for him, as he is this ill, is bringing back too many memories of my past. I know it's not exactly the same, but it "feels" the same, if you can understand what I mean.
To make matters worse, this situation has brought up something, that quite frankly I should have already considered and now am dreading doing the responsible thing. My current partner hasn't tested for hiv in quite a long time. Yes, we're monogamous and yes, we have safe sex, as that worry actually was a reason for me not "officially" committing to this sero-discordant relationship for several yrs. But I really failed on the follow-through and never discussed this to the point of us keeping tabs on his status. I was going to cop-out and try to take the easy way out by seeing if I could get my doctor to bring up the topic of testing at my upcoming appt (my partner goes with me). However, my partner brought it up himself and we talked about how we shouldn't have neglected this; and also about how much both of us actually dread the outcome we could get from his hiv test. (Who can't understand the fears of testing? ;))
Instead of being about to celebrate turning 46 (which I never would have imagined happening to me back when I got my poz test results in 92), and celebrating the 10 yr anniversary (also on my bday) of the last time since I was hospitalized (with an OI); I'm spraying the 3rd can of Lysol this month around the house until me and the dogs are sneezing hoping not to catch any germs (I've only got about 245 little hard working tcells to fight them off and literally everyone that I know has had some sickness in the last month, so there's no where I can go to escape! LOL), worrying about whether, in a worse case scenario, I could be destined to lose another partner.
I know that may sound melodramatic; but I've lived a life (remember? I told you I had stories to tell) in which my homes were burglarized three times, had a fire that did $30,000 worth of damage, lost a partner to AIDS just before we could celebrate 10 yrs, been hospitalized with PCP on my bday, then hospitalized with pneumonia two yrs later on my bday, buried seven cocker spaniels and one cat owned by me and my late partner, and have now outlived one of the four pets I've had on my own. Not to mention 10 yrs of struggling with side effects until I found a regimen that, although it still produces some nausea side effects, has finally gotten my counts to bounce to undetectable a few times. There's been some serious situations in my life but I've struggled through, hung on, and made it this far. WooHoo! But it's also made me a little pessimistic and wary (maybe even to the point of neurotic LOL) of impending disasters in my future.
Oh, I almost forgot to mention that my 98% compliance to my haart regimen has dropped to probably 80% lately - because of having to cook differently for my sick partner and myself (chicken soup for him, real food for me LOL), because we're eating at odd times, and because I can't afford to be sick from my meds when I'm taking care of him and he is so much sicker than me for a change (shades of the past again - like when I quit taking the AZT to stay well enough to care for my late partner). It doesn't help that I get the positive re-enforcement of "not puking" when I don't take my meds. LOL I always feel best when I'm not on meds. Well, until that viral load skyrockets again!
It's been 30 days since that first cigarette in the mountains outside the tunnel, and I've smoked 3 packs now. It's nothing like the two packs a day I had been smoking just four months ago; but I still feel terribly guilty for smoking any. Every day, I think I won't light up another one; but then somewhere along the line, I just get the craving too much. I tried not to have any yesterday; but that didn't go so well. I woke up and barfed from my meds (See. I'm trying to be compliant!), my partner was still sick with his fever, and I had to go have blood drawn for my labs results in two weeks - the day before my birthday. Argh! (You'd think I'd get used to all the blips in my numbers after all these years; but how much you wanna bet these results won't be good numbers?) Needless to say, when I got a little stressed-out and bitchy by the afternoon, a couple of cigs took the edge right off.
After the car skidded out and came to a stop (yes, eventually my convoluted stories come back around LOL), I drove the car back onto the street and slowly went around the block and eased into the drive. As far as my other problems, I guess I'll have to tackle them slowly and ease things back together. The first issue to handle is my partner's sickness. If he's no better tomorrow, then we're heading to the emergency room. Tomorrow too, I'll resolve to take all my meds (and just deal with the barfing it I have to) and not smoke any cigarettes. (gosh, I made quitting my bad habits sound easy didn't I? LOL) After that, I've got two weeks to deal with testing (unless that happens in the ER), doctor appt, blood results, side effects and my birthday.
Lest you think me totally a pessimist (I mean, I DO have a plan of action to handle these issues and, I hope, perferably to a successful resolution), I learned not to worry too much about my blood results. They seem to never come back the way I think they will (bad when I think good; and good when I think bad), so whatever the results they won't be something I haven't heard before in 15 yrs. LOL (just look at that graph in my sig line. LOL) I'm also planning for my partner to get over this illness and whenever a hiv test is taken, that it will come back neg. However, that still leaves me with a problem. Just how often should my sero-discordant negative partner get tested? How did any of you handle a situation like that? How much do you worry about it?
Hopefully on the bright side, when I do finally get around to posting about this on my blog (I think I'll wait a couple of weeks for things to settle down), I'll be able to write how my partner finally recovered and that I had okay numbers from the doctor. (Eventually I'll have to talk about my partner getting tested; but it won't seem so ominous when he's not sick.) Of course I'll also write about how happy I am to get a year older and how glad I am that I haven't been back in the hospital in 10 years. WooHoo! ;D
mikie
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My wife gets tested once a year.
Don't kick yourself tooo hard for the smoking my friend.
Times like this must have your mind racing, pm me if you need someone to talk to.
I just took a minute to pray for a little strength for you.
Hang in there buddy
Lucas
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Hey
Well, dont beat yourself up. Relax. Your partner will get well. You can quit smoking all over again...wont that be fun??
Thinking of you!
Joel aka bear
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I must of quit smoking 50 times before i had any long term succuss. It's really hard the first few months but after that I stopped thingking about them so much but, I still do a few times a year and it's been ten years. On the upsiude when i did quit 6 months later I really felt huge differences in my energy level etc
My heart goes out to you. I hope you are able to get more disiplined with your HAART. I got the flu so bad in 1990 that i have gotten a shot every year since. i was sick 6 weeks. I ran a fever/temp for a month solid may e longer and I was 29 at the time. I imagine a 52 year old could get walloped worse :-[After the congestion cleared i was still listless with a temp. The Flu can really tear a person up like you are describing with your partner. I would say if you can get an office visit it's better than the ER. ERs suck IMO.
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Mikie----
Wow, I think you really needed to vent. If you have been doing a blog, isn't the point of it to share things with others? Or to get things off of your chest? I understand that you are concerned about worrying your Mom but maybe there was someone else in your fam who could've supported you. But then how often does your Mom read your blog or were you worried about someone in the fam telling her? I don't know where I am going with this, just asking questions, I suppose. For me, blogging is a way of getting things off my chest that I usually can't any other way. You have been doing it for so long, I just don't want to cut yourself off. You have been doing it for so long that it must be some form of help to you.
As for your deju vu with your current partner being sick. I think you are doing the most important thing and communicating with each other even if your partner was the one to initiate it.. ;) It seems to me that you both are on the same page and he is probably aware of your concerns and had a few of his own. It is good that he has decided to get tested and neither one of you should beat yourself up over not doing it sooner. I think in the back of both of your minds, you both knew the day was coming when he would have to go get tested. You both made your choice and seem to have accepted it. Now it has come to this and you both are being proactive, just go from there and try not to think the worst even if his test does come back poz. And if it does, you are already one step ahead because you know the changes that would have to be made and will waste no time doing it. All you can do is take each day as it comes...I will be praying for you both... :-*
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Thank you all for the kind words of encouragement. :-*
I thought about what you said Queen, and decided that I would write about what's been going on; which is good, because events have changed and now I'm going to have to write about what's been happening.
My partner, Jim, is in the hospital now :(
His doc saw him this morning at 10 and ran more tests; but soon informed us that Jim would have to go to the hospital. At 6pm, they're still not certain what the problem is yet. The nurse said she saw the chest xray and that his lungs, and heart, looked good. That's good news because it probably rules out pneumonia; but, of course, it's still bad news because that means they don't know what it is yet. Of all things, they called in MY infect. disease doc to consult on the case! I guess we'll be finding out his hiv status, whether we want to or not, as soon as those vials and vials of blood get tested. I'd like to say that that solves one issue and takes a load of my mind; but instead this has all just pushed me towards the edge of a serious panic attack. ::) (It makes me have some sympathy for those people in the Am I Infected? thread. LOL)
I had considered going back on the Chantix for a while to kick the smoking; but I don't think I'm in the right frame of mind for those "vivid" dreams right now. So I was a very bad boy and instead of sneaking cigs from the boyfriend's pack, I went out and bought myself a pack. sigh.
However, I have still been trying to be proactive with some of these problems and did make headway on one issue. For the past three days now I've been taking all my meds! ;D WooHoo!
home alone :'(
mikie
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Dear Mikie
Just letting you know I'm thinking of you guys.
big hugs
Sharkie
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Mikie----
My heart goes out to you and sorry to hear that your mate is now in the hospital. I hope that they figure out soon what is going on. I think it's a blessing that they called in your ID doc, it should save time explaining things since he knows you already. And since you both have been dragging along about him getting tested, you know now it will happen. Try not to panic and I think the perfect person to get advice from on this would be RevMC because he is going through it now. I am sure you both could be great support for the other even if thru PMs. Just a thought.
And I am glad you decided to talk about it in your blog. You never know who might step in and support you there. And I am sure it will help you to vent as well. And you know I am here for you if you want an ear... :-*
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Try not to panic and I think the perfect person to get advice from on this would be RevMC because he is going through it now.
ah, yes. I read his posts and think back to my time with Randy. :'( I too can recount minute by minute, like I read in Sharkie's post the other day. So sad that so many of us here have lost someone. I know my opinion is biased, but it's not just losing a "someone", it's losing the other half of yourself.
I think it's a blessing that they called in your ID doc, it should save time explaining things since he knows you already. And since you both have been dragging along about him getting tested, you know now it will happen.
yeppers, sometimes those silver linings are pretty thin; but if you look hard enough you can always find them. ;) ;D My doc is a great guy and now we'll have tons to talk about at the coming up appt. LOL (turning 46, 10 yrs out the hospital, Jim's status, my med side effects, lab results, med changes maybe, pn, smoking.... oh lord, I hope he scheduled plenty of time for me. Usually I'm in-and-out within 15 mins; but not this time. ROFL)
And I am glad you decided to talk about it in your blog. You never know who might step in and support you there.
gosh I just hate bothering my friends with my troubles; but I did send out an short email about the situation and promised to write up all the details. What do you know?!? My inbox is stuffed and the phone had been ringing all evening. Of course all three of my moms have called. ;) (my real mom, my mom-in-law, and my "adopted" mom). My local mom (the "adopted" one here in OH) had me over for dinner, since she just knew I wouldn't be cooking tonite. Moms gotta love them. They try to make everything better. :-*
this is too weird though, having this "test" anxiety waiting to hear about Jim's lab work at the hospital. Through the yrs, as I've gotten older, I've changed my opinions about all sorts of tests. Sometimes I want to know what's going wrong; and sometimes I think I'd be better off just not knowing. LOL Way back when I first tested poz, I don't really remember being too nervous about the results; but then I was in my wild late 20's and could have been too high or drunk to have known to be worried. ROFL Tonite, I'm sitting here, smoking like a chimney, waiting to hear something in the morning.
mikie
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After a fitful night of sleep (my first night alone since I moved into Jim's house just over a yr ago), I woke up barfing and feeling like crap. I waited a while, felt a little better and finally took my morning meds. WooHoo! So life is running pretty normal for me ::)
No news on Jim though. Argh! They had told him that they'll probably have some results around noon, so although it was quite a struggle for me today, I got myself together and was at the hospital from 11 to 3 - and no doctors.
Of course they stopped in not 15 mins after I left. LOL
Jim says they told him all his tests came back negative. The poor fever-addled guy didn't ask whether that meant an HIV test was neg, but I'm going to think good thoughts about that one. ;) My ID doctor's new partner is on the case, so I would suspect that they checked. I told my honey to really remember to ask the next time the doc came to see him (cause I really, really need to hear them say that he's neg). Now they're planning on running a cat scan next to look for a bacterial infection inside him somewhere causing this problem. At least he's looking a little better today, now that they've pumped some IV fluids into him; but he's still just as sick and they still don't know why. :(
Since Jim hadn't been off the couch in nearly two weeks, I guess I'll take some time this evening to run the vacuum, wash some dishes and do some other neglected housework. You know what they say, there's no rest for the wicked. ROFL
leatherman
(who must be very wicked indeed! :P)
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It was only raining when I went back to the hospital last night (please come watch Idol with me, the sick one pleaded. LOL); however, the ride home was pretty wild. It seems it was "freezing" rain. So branches were down in the middle of the roads all over town. To make it a more fun drive, half the city didn't have power and was in the dark. WooHoo! I'm really getting tired of Ohio Winters. ;) Thankfully, there was power on my street (although it flashed off-and-on a dozen times throughout the night. I got tired of resetting all the clocks and finally just let them blink - and they're still blinking now. LOL)
Leaving a much cleaner home the next morning (I did a bunch of chores), I headed back to the hospital, determined to talk with a doctor. After 48 hrs, Jim was still battling a fever with only iv fluids and tylenol. Except for the results from the tests, I could have cared for Jim a lot better (and easier on me) at home rather than running up a bill at the hospital.
After putting off our calls all day, the doctor finally showed up in the late afternoon. Even though I wanted to be mad at him for not helping more, he turned out to be an alright guy. Unfortunately, it takes time for some of the tests. We do know that Jim doesn't have pneumonia, TB, hep, influenza, and a bunch of other stuff. It chilled me to hear him say that Jim's cd4 count is only 190. The doc couldn't say anything about an HIV status until the western blot comes back tomorrow, though I did understand his possible explanation of this illness to be "seroconversion". (he also mentioned the eliasa test; but I couldn't get the words out of my mouth to ask what that result was.) They're also scheduling a cat scan for tomorrow, to look for an internal bacterial infection that could be the cause of the problem. So we still don't know what's wrong; but we do know some things that it isn't.
Poor Jim. He finally broke down and cried about all this today too. Screw that "contact isolation" rule, I had to hug him. As he sobbed on my shoulder, the only words I could make out were "leave you like Randy". All I could tell him was what I'm been hanging onto to get through: he's not sick like Randy. Even if it is HIV, it's 2008 and not 1992, there are meds now, good meds. History doesn't have to repeat itself.
well, i just got a call from Jim and the cat scan has been moved up to 9pm tonite. So it's back to the hospital for me. (after american idol, i think I'll nap in his hospital bed while he's out being scanned ;) )
Please keep us in your thoughts and prayers.
mikie
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Mike, I know we've sparred back and forth before; but this is not the time for that. I'm definintely thinking of you and Jim at this difficult time.
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Prayers and good thoughts to you and J. tonight! It will be better for both of you when you find out what is actually going on, then you can face it and deal with it.
hugs,
Alan
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Mike, I will keep you and Jim in my thoughts.
Take care,
Snow
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i forgot how tiring it is to be the caregiver ;D Even with Jim out of the house, there's a million things to handle and the trips back and forth to the hospital. I would promise to take care of myself and get some rest; but we all know I'm just too worried, so why bother with the lie. :D At least, I've gotten my meals and meds back on schedule. ;)
Jim seemed a little less in the dumps tonite. Just knowing what he doesn't have, getting that scan, and seeing some movement toward a solution has helped his spirts some. Although my heart dreads hearing what might be the problem (HIV), my head agrees, Alan, that we'll both be happier when we know what it is so we can deal with it. I handled things with Randy, I've handled things for myself for years, and I'll deal with Jim's problems too.
And Betty, isn't that what families are all about? You squabble sometimes; but when things get rough, everyone pulls together. :-*
This has all just been very disconcerting to me. Things were so different just over two weeks ago when I was excited and happy about my trip back home to visit with my family to celebrate all our birthdays. Now I caught myself three times today saying "Randy" instead of "Jim" when updating our friends about the current situation. Gosh, my head is just such a mess right now. ::)
I really do appreciate all of your concern. :) I'm going to tell Jim tomorrow that y'all are thinking and praying for us. As soon as I know more, I'll let you know.
mikie
(maybe tomorrow I'll get some time to reset my damn clocks so they quit flashing at me. LOL)
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dont really have anything of wisdom to say dear
just wanted you to know im thinking of you and jim
xxxx
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still no news on the western blot. however there was news from the cat scan. Cancerous tumors in the colon, on the liver, and another "mass". Egads! and I was worried that a positive hiv result was going to be the bad news. But that result is still pending, so it still could be a bonus . :o
tomorrow at 11 is the colonoscopy and biosopy (wow, first time typing those words). then we wait to find out if it's bad news, really bad news, or really, really bad news. (i should also mention that I'll be making my trip to the hospital tomorrow during a storm predicted to be 7-12 inches of snow!)
edited to add: his dad died at 42 from a heart attack; and his mom was diagnoses with intestinal cancer during a surgery, and passed away 6 months later at 54
Fouteen years ago I sat beside my lover on his hopsital bed and promised to take care of him throughout whatever (be it death, infirmity, or hopefully recovery). Then I went home and prayed (damn that Baptist upbringing!) that God would at least let my partner live peacefully until his birthday in July.
That was Dec 1993. Randy passed away May 1994, before his 30th birthday on July 9th.
Tonight I'm going to have to make that same promise, come home and pray again, and hope that Jim is still with me on his 53rd birthday on July 29th.
mikie
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Mikie-
I am so sorry to hear about the cancer. Good luck tomorrow with the tests and getting into the hospital safely. I will keep you and Jim in my thoughts and prayers.
Snow
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Mike, still keeping you two in my thoughts.....
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i got home from the hospital last nite, and finally got around to washing my own clothes (we're about to have a serious snow, and all my thermals are dirty). Just as I was about to start my clothes drying, I got a call from Jim (it was 1130pm). He has gotten very sick (very puke-y) and was crying so hard. I threw some dirty clothes on, shoved some essentials in a bag and headed back, where I spent a miserable night as Jim was not only sick but starting the regimen to clean his system out for the scope.
The orderlies had just got Jim loaded up to go for the colonoscopy, when our ID doc stopped by. He sent everyone out of the room and closed the door. Of course, that is never a good sign. Well, the western blot has come back positive.
I've got 2 or 3 hrs now while Jim will be out from this procedure, so I had to trek home (there's already 2 inches of snow on the roads and nothing had been plowed!) so I can shower, change, get some comfort from my doggies, and pass along the bad news.
Somehow now, I have to find the strength to go back (and it's still snowing!) in just a few short hours and deal with all of this. The doc (doing the procedure today) is supposed to come by late today with a prelim report on the results from the scope. The official biospy results "may" be in by tomorrow.
I'm just so sad right now, I can hardly stand it.
Thank you again for all your thoughts and prayers.
mikie
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Dear Mikie, I'm so sorry you two got this double-whammy of bad news. I've been keeping you both in my thoughts lately and I'll be sending daily - hourly - doses of love, light, strength and healing thoughts both your ways.
Please, remember to take care of yourself though this too.
Hugs,
Ann
xxx
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Mike, I am so, so very sorry to hear about this. I will definitely be keeping you and Jim in my thoughts today and sending some good energy your way. Please take care of yourself. Give yourself (and Jim) hugs and kisses (from me).
Luv,
Betty
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the doggies are tripping cause they've been alone so much lately; but they just had a blast with me playing out in the backyard in 5 inches of snow. Next I tackled the driveway with the snowblower so I could get the car back out (and find the driveway the next time I come home LOL). Mmmm, the hot Lipton chicken noodle soup got me all warmed back up; though the house is beginning to smell more like wet cocker spaniel now than soup, as the snow is melting out of their fur. LOL
I forgot to take my phone out with me, and missed a call from Jim. Now they're running an ultrasound on him this afternoon. So instead of going right back to the hospital, I'm going to stay at home a little longer. Heaven knows I could use a little bit of "down time". I'm trying to take care of myself too; but it's tough. I've been eating - not as much as normal; but I'm getting enough. I did get a few hrs of sleep the last few nights, even at the hospital which really amazes me - if you're ever been in one a few nights, you understand. I'm still smoking - but not as much since, by law, I have to go clear out to the car in the parking deck to smoke. Thank goodness I had broken the habit for a while, or I'd be jonesing really bad trapped in Jim's room all night. ;D I have missed a few doses of meds but part of me really doesn't care. It's only been a few doses and I don't have time to be hanging over a toliet throwing up right now. One way or the other, things will mellow out soon, and I'll get back on track.
I talked with my mom (we talked contingency plans on "what if" - you know I gotta worry, like the surviving partner does in the worst case scenario, about what happens to me next. Gotta keep a roof over our heads and heat for me and the dogs.). Also chatted with my mom-in-law (that's my late partner's mom), of all the people in the world, she understands the most, as it was the loss of her son that she and I shared. Finally I chatted with my Ohio mom (with all this tragedy, I've still been one of the luckiest guys in the world to have THREE moms, and TWO wonderful partners). Since Jim will be out for the ultrasound, and the snow is finally slacking off some, I'm going over to her house for dinner tonite, after which I'm going back to spend another night at the hospital with Jim. I shouldn't be back home to post another update until sometime late Sat. and maybe I'll have some news (good news would be nice) about the colonoscopy results.
I really do appreciate everyone's concern and good thoughts (and the hugs and kisses ;D ). I'm sorry that I've had such bad news to tell all of you; but I'm so glad you've been there to listen (well, read). I started coming to these forums because for the longest time, in my little Ohio city, I felt like the oldest, onliest guy around still living with AIDS. Even though I'm sadded for the reason, I made many new friends here who too had shared in the grief of losing a partner and were still continuing to struggle with this illness.
Although you may not be able to help Jim and I in this situation, just knowing the good thoughts and prayers coming at us from around the world helps to ease a little of this heavy burden off my heart. :-*
mikie
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Mikie---
Damn, baby, I am sorry to hear the bad news in regard to Jim. I was hoping his test wouldn't come back poz but kind of figure it may. But to hear about the other thing just blew my mind. I knew that you guys could make it if he was to come back poz but to be hit with 2 things at the same time is like OMG!!!
Try to remain strong and take care of yourself. And please be safe while driving to the hospital. I will be sending all the good vibes I can you and Jim's way.((((hugz))))))
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Dear Mikie and Jim
I am so sorry to hear the news. I am thinking and praying for you both. I am so glad you have each other. Please take care of yourself Mikie.
Big Giant Hugs,
Sharkie
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Love being sent your way this morning, Mike.
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I'm really sorry that you had this bad news . I hope your partner comes home soon.
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Lordy, it's a freaking blizzard here in Ohio! Even after clearing 6 inches of snow off my drive yesterday, there was a foot of snow on it when I returned this morning from the hospital. Matter of fact the car got stuck just as I entered my driveway. I had to clear out that foot of snow, and my neighbors helped me push my car out of the drift and up into the drive. Then I had to shovel a patch out back because the dogs wouldn't even go out as it was over their heads! I made arrangements with Jim to stay home tonight as the actual blizzard conditions are coming this afternoon. (I can't wait to sleep in my own heated water bed, even if I had to sleep in it alone.)
Unfortunately there were no conclusive results from the colonoscopy. So while they did an EDG scope (through the throat and down) this morning on Jim, I grabbed some breakfast at the McDs downstairs in the hospital. While I was eating, who should I see but MY ID doc! It seems his partner, the one on Jim's case, lives in Akron and couldn't get the 20 miles down the interstate, so my doc came in to take over the cases for the weekend. I must say how much I have appreciated these two docs. They, more than any of the other docs, have kept us informed about what been happening. (my doc told me he knew I had an appt soon as he had seen my results come in yesterday. I teased him about wanting that appt. fee on Thurs rather than bringing my results in with him. LOL I told him I didn't know what to expect, but if they weren't so good, with all this stress I've been under, I wouldn't be surprised. Of course, he countered by asking if I had been taking my meds. Oops! I must have hesitated too long or something, cause I got a glare and was told that we would "discuss" that issue then on thurs. I'm in trouble now. LOL Wait till he hears about me smoking again.)
More importantly though, these two doctors have been the ones who have really helped to keep Jim's hopes up. Although they've been pumping Jim full of IV and pill antibiotics, he's still has a fever. With each non-result, Jim has gotten more depressed (if that's possible) as he approaches a week in the hospital. I'm starting to feel bad too as I told him we just needed the colonoscopy to know what to do; and then just needed this EDG scope to know. Now they are saying it may take exploratory surgery to get answers. Unfortunately, I'm going have to keep telling him to hold up through one more test, until we know how bad things are.
Personally, I was ready to wait for a viral load and some conclusive results about the tumors before worrying about the HIV, but not the "hopeful" ID docs. They started Jim on Atripla yesterday. I was very good and didn't say anything about how much I hate Sustiva, nor did I mention any side effects (even when Jim said he had been having some weird dreams from the time I left the hospital to when I called to say I had made it home through the snow). Maybe we'll get a little bit of luck and the Atripla will do fine for Jim.
The docs are going to do another ultrasound later today. I'm hoping they don't schedule any surgery for today (but if they need to, then the sooner the better). If they do, I'll brave the snow and head back. In the meantime, I'm going to crash on the couch for a while and just watch some of the TV that been recorded (just last week we got the new ATT U-verse service and a DVR). I tackle the driveway again after I get some rest, just in case I do have to go out again. And yes, I'll take my meds tonight with dinner like I'm supposed to. ;)
hugs back to everyone!
mikie
(who needs to find the thread about the spell check since it doesn't like the words "colonoscopy" or "Sustiva")
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Mike, I'm glad the doctor took the initiative to start Jim on Atripla. Maybe it will work for him, ya never know.
Keeping you two in my thoughts, baby. :-*
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Leatherman
We've not "spoken" but I have been reading your posts and just wanted to reach out to admire your bravery, compassion and love for your partner. Its good that you are taking care of yourself as well, so that you can be strong now for both of you.
Sending strength . . .
Assurbanipal
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In all, I cleared 20 inches of snow off the driveway. Heading back to the hospital this morning, I was the only car on I-77 and thank goodness cause the roads were still a mess. Although the roads had been plowed, you still couldn't see the asphalt at all. Driving across all that packed snow and ice was very bumpy and probably not good at all for the suspension; but that's a worry for another day. ;)
Although Jim isn't much worse (though he keeps getting thinner and weaker each day, and he's still running the fever); he definitely isn't any better, even with all the antibiotics being pumped in. :( The doctors weren't able to determine anything with the EDG scope either. :( They are trying to run another ultrasound but because of the snow, the nurses have been on a double shift, and most of the staff was simply unable to come in. So, we're really hoping they have the staff to do that procedure tomorrow. Several of the doctors have explained to us that the "mass" in his belly "may" be close enough that during the ultrasound, they "may" be able to stab it with a long needle and get a sample. One theory is that these spots still might be pockets of infection, while cancer is still the top choice. Either way we might be able to finally get some sort of indication with this kind of test.
I'm doing the best I can to try to keep Jim's spirits up and him agreeable to just "one more test". But it's tough when tomorrow at 1pm, he will have been in the hospital for a whole week without a resolution to the cause of his illness (much less having suffered with this for the previous 4 weeks).
As for me, I'm feeling so-so. I probably did way too much, clearing out that snow, and the meds I took at dinner made me feel real queasy for a couple of hours. (I didn't barf though. WooHoo!) However, I did enjoy a nice night back in my bed even if it was without Jim - at least I had the three dogs with me. After a visit in the hospital for most of the day, I took a few hours to have a wonderful turkey dinner (with all the fixings) at my Ohio mom's. Of course, now I'm back at the house, taking care of the dogs, updating everyone, and packing a bag to stay over at the hospital tonight. I really dread sleeping on that pull-out chair another night, but if we finally get a break, I'm hoping I "need" to be there in the morning when they finally get a conclusive result.
worn-out, drained, emotionally numb, and tired of Winter;
but still hanging in there, ;)
mikie
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Mike, I think about you and Jim every day. It's wonderful that he's got you for a partner.
Please take care of yourself. What do we do at these times, but just go on.....
Luv,
Betty
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"but still hanging in there,
mikie"
You and Jim keep hanging in there, and ill keep praying for both of you.
And Stop beating yourself up for Smoking
Lucas
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Oh, my gosh Mikie! Not sure how I've been missing this thread. I am so very sorry for you and Jim. I pray that the docs are able to find what's going on so that you (all) can begin to develope a plan that will get Jim home and healthy. Prayers and love to you both!
Mum
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Just a short (sorta LOL) update this time folks, cause with that snowstorm keeping so much of the staff away, not much has happened.
The nurses took pity on us last night and, after giving Jim a sleeping pill at 10p, they actually left us alone for most of the night. Sure they were back in at 430am to take vitals, change IVs and stuff; but I'm sure I slept soundly for about 6 hrs, and Jim got even more sleep because he doesn't remember them coming in and doing any of that. :D Also I'm happy to say that he's been eating some. :D He's hardly eaten much of anything for nearly 3 weeks, so seeing him eat a grilled cheese sandwich last night and french toast this morning made me feel a little better.
The doctors were by this morning and scheduled the "ultrasound/biopsy" that was put off all weekend for 230pm. Cross your fingers that we can get some results today (at this point, I could care less what they are, we just need to know what Jim's problem is for sure). So, I'm packing back up (just in case I need to stay at the hospital again; though I'm hoping I can get another night back at home) and heading back to the hospital this afternoon.
Let me say again how much I've appreciated y'all's concern for not only Jim but myself too. Every trip home I find a couple more posts here and another handful of emails in my inbox. Knowing so many people from literally around the world are sending out good thoughts, prayers, vibes and hugs for us sure has helped me struggle with this raging bout of depression and hard times. :-* :-*
mikie
(who gonna go play with the doggies for a while so they don't think they've been totally abandoned. LOL)
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Hi Mike,
My fingers are crossed. I'd cross my eyes too but I would have a hard time posting. ;)
Hugs,
Ann
xxx
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Mikie,
I don't know how I missed this thread for so long, but only saw it last night - my apologies.
I am amazed at your strength right now and only wish to express my best thoughts and wishes for you and Jim.
Mark
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Best of wishes to you and your partner, Leatherman :-)
Re how often should a neg partner get tested in a discordant relationshit.. personally, I've been pressing my partner to get tested every 3 months, even though that week of waiting for results is usually semi-traumatic for me :-(
Big hugs, keep well :-)
J
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don't feel bad about missing this thread. I wish I hadn't had to post it and that none of us had to read it - like many other sad threads we've had in these forums over the yrs. Even though it saddens me that any of us are here, I'm just glad there's a site like this where people can understand such problems. I'm sorry if I ramble on in such long posts, but as the saying goes, "Shared joy is a double joy; shared sorrow is half a sorrow". I thank you all for sharing half my sorrow for I'm sure I would drown under the weight of it all.
Still no conclusive results about Jim; but we took a great step forward this afternoon towards finally knowing something.
Thankfully, I got back to the hospital just as transport was about to take him for the ultrasound. By now many of the nurses, doctors, and staff have begun to know us too well after we hit the "week" mark at 1pm today (especially since we were some of the few people in the hospital during the snowstorm throughout the weekend). They allowed me access to the hospital at some odd hours, offered me drink and food, and today let me go with Jim for this procedure. (they also told me, even though Jim had asked them not to, that he hadn't gotten very sick after I left, and lost the breakfast he had eaten.)
I got to watch while they did the ultrasound and actually "saw" part of what's been causing Jim to be sick - a mass about 6 inches long and nearly two inches wide. Yikes! However, they did send me out of room as they did the biopsy. Again they treated me kindly and gave me a chair to sit on in the hall right outside the room, instead of sending me down the hall to the waiting room.
After about 15 mins the doctor came out to speak with me. You know how sometimes you can almost forgot about a bad thing, and then it'll hit you like a mac truck? The doctor wanted to how long Jim had been HIV+ and if there was any special considerations he should know about. Right now I haven't really thought much about that diagnosis because the other issue (the tumors) is of much higher priority.
One day I'm going to have to come to grips with that and the small nagging question in the back of my mind as to whether this (the hiv) is my fault. It's just been Jim and I for the last seven years (he had tested neg beforehand), so I almost have to assume that somehow we fell into that teeny-tiny percent when the safe sex fails. (Isn't that just great fodder for the Am I Infected? crowd ;) ) Maybe a geno/phenotype test will show something to the contrary but until then I'll have to think that somewhere we must have not been careful enough.
A pathologist also was waiting outside in the hallway to test the sample, in case they had to go back in with a larger needle to obtain a bigger sample. Thankfully, the doctor was able to obtain what they called a "very nice" sample with just one needle stick, though it took nearly an hour. The biopsy doc told us it could still take up to 3 days to get the results; while the cancer doc that stopped by when we got back to the room said that he's expecting the results tomorrow night or the next night at the latest.
Tonight I made a decision that I'm sure some of you, along with my doctor, will not agree with. Just as I was finishing up the last few bites of the only dinner I've been able to have at my own home in a week, I could "feel" that norvir gelcap burst. Try as I might, within an hour, I couldn't fight it any longer and spent some time heaving into the toilet. (flush! goodbye dinner and meds) Of course, the phone would ring just then. When I finally felt a little better, I checked and saw it was a call from Jim that I had missed. Crying on the bathroom floor, with the dogs anxiously checking me out, I reached a decision - no more meds for a while. Stuck back in that same old deja vu, just like with the AZT and caring for Randy, I can't afford to be sick and puking from meds while dealing with a deadly sick partner. Trust me, I will tell my doctor when I have my appt on thurs; but unless he has some miracle solution, I just don't know what else to do. I survived 14 yrs ago when this same type of situation happened, and I'm determined I'll survive it again somehow.
After spending tonight at home, I'm sure I'll be back at the hospital most of tomorrow afternoon and night. Unless something unexpected happens, I probably won't post again until after we've gotten results from the biopsy, so you may not hear from me again until wed or thurs.
I have been telling Jim about each and every one of you who have wished us well and he told me to tell you thank you for keeping us in your hearts, thoughts, and prayers.
:-* mikie
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Hey Mikie,
I don't know what to say. Right now, please take care of yourself and come back soon to us once you're able to.
Hugs, Shaun
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wow mikie. no judgement here man, do you what you need to in these tough times. ill keep your partner and you in my thoughts and prayers.
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Mike,
I'd been following along since you started this thread, hoping for the best. I'm so sorry this is all happening.
I'm with Lucas about the smoking thing. I'm not so sure about you stopping meds. When you go to your appt on Thursday, you can make this decision based on the new #'s and hopefully you and your doc can come up with a solution.
You're both in my thoughts.
Paul
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Mike, I believe meds are a highly personal decision and no one should judge one way or the other. In other words, you'll find no judgement here baby. You do what you gotta do.
I wish peace and a degree of serenity for you and Jim.
Luv,
Betty
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Jim had a pretty rough time yesterday. He was having terrible nightmares, and even hallucinating some as he dozed off and on. (more about that later) As the day wore on, his fever keep bouncing higher (finally hit 104), he was hit was some bad diarrhea and vomiting, and eventually started a really harsh cough. By the time American Idol was over he was having chills and the shakes. (I had never experienced that myself until my 9-day "mystery fever" a few years ago) Needless to say, with him that sick, we both were pretty scared. I remember being curled up in the corner of the bathroom crying a couple of times.
Some motrin knocked down the fever, cough syrup helped with his coughing, and the resterol (instead of Ambien) knocked him right out. Although the nurse popped in and spoke with me a few times through the night, everyone was really quite and Jim finally got some decent sleep from 1030p to 730a. I was frustrated though that no report came through about the biopsy results.
I was even more frustrated when Jim's GP stopped by in the morning, and told us that the other doctors didn't believe that they had gotten a big enough sample to determine anything. (Argh! That is NOT what the pathologist said after the biopsy!) His GP seems to be pretty good though and went to track down both the ID doc and the cancer doc to find out what the heck was going on. When she returned, she had gotten some answers for us. The sample was large enough for them to determine that it's some type of lymphoma. They're scheduling a spinal tap soon, an ultrasound of his liver this afternoon, and a bone marrow biopsy on Fri to determine the actual type. They're also going to be putting in a port soon so that can start the chemo. (it sounds like it won't be too long until Jim doesn't have to worry about that bald spot on the back of his head anymore, as his whole head will be bald. LOL)
As to Jim's nightmares/hallucinations, I had a good talk with one of the nurses and was happy to hear that she had read up on Jim's meds. While several nurses believed his nightmares could be from the Ambien, I'm certain it was the Atripla. After discussing the situation with his ID doc (who still didn't have a viral load count), we got Jim taken off that med - and no more nightmares!
At home for part of the morning and afternoon, while I'm washing up some of Jim's clothes, I'm baking some of my Amish Friendship Bread muffins for the nurses who have been such so kind and helpful (lemon/cherry/walnut, orange/cherry/walnut, and chocolate/cherry/walnut). Oh and my picture is on the front page of the local paper this morning! Yesterday, on the way back to the hospital, I had to stop for gas. The paper had a reporter and photographer reporting on the high gas prices - $3.45 a gal! About half a doz friends called this morning, surprised to see me in the news!
If Jim is doing alright later tonight, I'm hoping to sleep at home tonight. I need to spend some time researching about lymphoma. I glanced at GSOgymrat's thread "cancer update" and was heartened to see that his partner is doing well. That gives me back some hope! I won't be getting Jim home for my birthday (friday), and it's going to be really tough for a while; but at least it doesn't look like I'll be having to make funeral arrangements.
mikie
(who will be getting his own blood work results back tomorrow)
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dear mikie and jim
i dont really know what to say other than 'hang in there' and to keep sending you lots of love and best wishes
keeping you in my thoughts
xxxx
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Mikie, as always you guys are in my thoughts........
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Well, now look at you, you're a celebrity now besides a great partner!!! You go, boy!!! Stay strong and take care of yourself. I will keep you both in my prayers...
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It seems like I've had nothing but bad news to tell y'all (especially with Jim being so sick last night); but I have, if not good news, at least some nice news to report. Today was a much better day all around.
I was the talk of the floor for not only being pictured in the newspaper (check out the attached pix!); but my muffins were a hit! I'm pretty certain, from the stream of staff stopping by to tell us their favorite flavors, that I guaranteed the staff treating Jim as good as they have been. ;) :D
And they really all have been quite good about caring for my Jim. By now, every one of the floor nurses have been on at least two shifts taking care of him. There are also two aides from another floor who filled in during the snowy weekend, who stop by daily to check on Jim, along with four transporters who have been carting Jim around to his scopes and exams. What can I say? Even sick and deadly scared, we're loveable. ;D
But the really nice news of the day is that Jim felt much better! Oh, you can still tell that he feels like crap but most of the day his temp was normal and he was more alert and talkative. Several of his doctors also starting floating the idea about Jim being able to come back home "soon" (though I don't think their idea of "soon" is the same as Jim and I's idea of "soon". LOL Unfortunately I could see this continuing for another week or more) We still haven't celebrated Valentine's Day, and I won't have him home for my bday, so we're going to have quite the celebration when I do finally get him back home. ;D
Tomorrow afternoon about the time I'm going to see my doc (Lordy, I'm starting to dread that! ::) ), Jim will be having the surgery to have a port installed since he'll be starting chemo soon. That's good to hear too. In the last few days, they've had to move his IV 3 times because it keeps "leaking".
The only dark spot of the day was a little bout of diarrhea and hour long temp of 99.6 that I had this evening. I think it's just me being worn-out. I'm back at home for the night, ate a decent meal, took some tylenol, kicked back and watched Idol and felt 100% better. Now I'm off to a night back in my king sized heated water bed. Ahhhhh!
;D mikie
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Mike, my dad had a port-a-cath when he was on chemo for colon cancer and it worked out very well. Much better than getting it slammed all at once.
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I understand Betty. ;) A port is a good thing for Jim to have at this time.
But it's shades of the deja vu again. Randy had a clavical port put in when he was in the hospital for 9 days (Dec 1993) having a blood transfusion to fight his anemia. I don't know if I'm remembering correctly but I believe they used the port to administer Pentamidine to prevent PCP and fight the thrush.
Oh gosh! Randy had an unbelievable case of thrush that they just couldn't get under control at all his last 6 months. It's the scare of thrush that has always sent me running back to the doc those times in the past when I've gone off meds. When I saw it in Jim's mouth a few days before he went into the hospital, I knew we were in big trouble.
One related story because I've always been aghast at how it went down. It was during one of our trips to the hospital (a few months later in May 94) for Randy's pentamidine iv drip that his doctor called the nurse in that dpt. He had her put me on the phone. He told me the latest results showed there was nothing else they could do for Randy, and he asked if I wanted to "admit Randy to the hospital or take him home to die?".
Lovely bedside manner, huh? But I guess I should have expected that kind of rudeness from that drunk, homophobic old man. (that's not slander either. It all came out when, a few yrs later, he was busted for drunk driving and subsequently barred from practicing in the two local hospitals.)
Since during that 9-day stay Randy had made me promise never to admit him again, I took him back home and hospice care came by that afternoon to set up a bed in our living room by the front window. Nine days later, Randy passed away.
As I've said before it's the similarities to 1994 that are disturbing me emotionally about what's happening with Jim. After fourteen years, that old grief of losing Randy keeps bubbling up. I've even accidentally used Randy's name several times when telling our friends about how Jim is doing. :o I'm just a mess right now.
Well, time for me to go get showered and dressed so I can see Jim for a few hours before he goes to get the port put in and I go visit my doc.
still hanging in there, though really tired ;)
mikie
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You know Mikie, you guys are in my prayers daily.
I can see how this bringing back all kinds of memories. if is for me too, just reading what you are going through. You guys are strong and I know you will get through it.
luv,
Sharkie
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Mikie....your situation is bringing back memories for me too. My partner Paul had a clavical port ,as well, where all of his intravenous medicine was administered. Paul had CMV and was being treated for that when he collapsed and went into the hospital. He died a week later.
Mikie....try to take a deep breath. You are doing the best you can. In fact I am sure you are doing more than most would be capable of. Dont beat yourself up.
I too have been known to refer to Kurt as Paul ( my partner who died)....especially when I am anxious. When Kurt went in the hospital for the knee replacement I practically had a heart attack when they told me he had developed anemia from the heparin administered for the blod clot and was being given whole blood transfusions. Now he is getting back to the gym and working out again.
Pray for peace.
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you know guys, one of the first people I really met around here was Emma - and only because we share a similar anniversary for our lost loves. Sadly I imagine that there are quite a few of us LTS's who are here because there are people here who can understand and share in their grief. I too have read threads here, remembered the past, and gotten sad all over again. :'(
Personlly, that's why I try not to ever say those platitudes to people when someone dies. I don't think it gets better with time. I do think that the grief lessens though; but that kind of emotional wound lasts forever. Love doesn't stink; love hurts. ;)
The only consolation that I've ever been able to give myself (having lost Randy, 7 cocker spaniels, and the cat) is that if I had the choice of never having them in my life at all, or only having them for that short amount of time with all that love, joy and companionship; well, then I'll take the short time together and try (even though it's hard sometimes) to keep the good memories in the forefront of my brain, rather than those sad times.
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Today had it good points and bad points.
First the bad stuff to get it out of the way.
I spent some time hiding out in the bathroom crying again. Jim was very "out of it" today. He'll doze off while talking and I swear he's begun to sleep with his eyes open - which is very eerie. Blame it on the fever, the meds, and that he hasn't eaten in about 4 days - but at least he's been swigging the ensure. He wasn't much better after returning from having the port installed. Since he was out of the room from 2p-6p, I kicked back on the hospital bed and got a short nap in. I wasn't certain though if he even knew when I left this evening. Jim did call me later in the evening and I ran back up (the hospital is about 15 mins away) for an hour while he was more alert and wanted some company.
I also found out today that Jim's tcell count is 119 and his viral load is 300,000. :o So I guess we really can't put off the hiv meds till he's feeling better. I want to say they have switched the Atripla to Truvada and Kaletra; but I can't swear to it. There have been so many antibiotics (bactrim, flagyl, and a few others) and so many different doctors, I'm just going to claim I can't remember it all due to HIV brainfog rather than getting older. ROFL
Now for some of the better news from today.
Things actually went pretty well when I went to see my doc. We started with a good laugh about how much we've seen each other lately - at the hospital during the snowstorm, my picture in the paper and now at his office. (yes, he knew it was me in the pix right away too. My ponytail, sunglasses, and leather jacket are dead give-aways. 8) LOL I was also noticed by the cashiers at our local grocery store and the convenience store clerks where I get gas. Ah, don't worry. I won't let the fame go to my head. :P)
For some reason no tcell count was returned. He said we could probably guess that it was 250 or 300. I had to laugh and point out that that in the last decade it's only peaked at 311 once, so let's use the more realistic 250 since that's what I've had for a while and they seem to be doing the trick. (although, there is a tiny chance I may be catching a cold. I keep pushing it away though and hope that some rest tonite and some cold med fix things up)
My viral crept up a hair from 75 to 189; but I had a big ol' blip up to 2754 at the end of Aug, so this slight increase was nothing. I've been undetect 4 times since 2004 but just can't seem to keep it there. So in the long run that was decent news about that result.
We talked about the smoking but he was pretty sympathic to my plight. We decided there are worse things I could be doing under the stress ::), so he wasn't going to fuss at me.
Of course, we talked about me and the meds too. Unfortunately between the drugs I won't take and the ones I'm resistant to, I'm stuck with a regimen that includes norvir. Sigh! (Won't Jim and I just be a pair back home in a month, both of us puking into our respective buckets. ROFL) We also chatted about the doses I've been skipping. While he doesn't, and can't, approve; he did understand how I'm caught between a rock and a hard place. (I talked about not "hanging over a toliet puking while Jim could be in the hospital dying"; and he talked about the "societal complications of adhereing to a regimen". ::)) I promised that I would try to start taking them again and he promised to make me have my counts done EVERY month now. :D
it's almost midnight now and I plan to start my bday off sleeping in my own bed! ;)
mikie
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Mike
Through all of this it was nice to hear that Jim had a better day. It's your birthday now, right?. I'd like to wish you a happy birthday , but that seems a little silly. Jim may not be home for your birthday, but maybe you can bring a little cake to the hospital today??
It's true that losing a lover doesn't get easier, but the pain does lessen over time. I always said I was a very lucky guy to have had the most wonderful man for 7 years before he passed.
Share your thoughts of the similarities Randy/Jim with us online. I hope you can put that in the back of your mind otherwise while dealing with Jim's illness day to day. ( I'm not sure this sounds right, I tried writing it twice, I hope you understand what I'm trying to say!)
Anyway, you're both in my thoughts, and I wish you all the best.
Paul
edited to say this was posted before reading Mike's last post... get a good nights sleep Mike!
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Happy birthday Mikie. I hope it's a peaceful one.
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Mikie,
Special birthday hugs to you today, my friend. Some of us here know what you are going through....I have you both in my prayers.
Stay strong, take care of yourself as best you can.
Love,
Alan
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Birthday Hugs Mikie :-*
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Happy Birthday Mikie!
All my best to you and Jim.
Mark
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Happy Birthday!!!! :-* :-* :-* :-*
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Thanks for the birthday wishes guys. ;)
WooHoo! I've been poz for 16.5 yrs, had aids for 12 of those years, nearly croaked from PCP and pneumonia, and never ever imagined that I'd make it to 46.
I forgot to tell you about the package I found by our front door last night. My sis-in-law had sent me a cryptic email telling me to watch for the mail; but I wasn't expecting a package. What I saw when I opened the box was the perfect gift for Jim and I at this time. Inside were several magazines, several boxes of assorted munchies, a box of kleenex, a deck of playing cards, two other card games, a book of puzzles, one of those 20-questions electronic gizmos, along with a bday card for me, and a get-well card for Jim.
I knew I wasn't going to get what I really wanted for my bday (for Jim to come home); but I didn't expect this day to take such a bad turn. I had chatted with Jim this morning and he was doing as well as could be expected. My plans for the day were to visit him about noon, then go have my bday dinner and cake, and come back for another short visit.
However, I arrived at noon to find our end of the 7th floor hallway filled with doctors and nurses. It seems that Jim had a really bad night (diarrhea and vomiting, and he's too weak to get out of the bed now) and things weren't getting any better - things were actually getting worse. His fever was back up to 103, and the chills and shakes were back with a vengeance. They had him hooked up to several new monitors and back on the o2, because just moving around in the bed was sending his heart beat racing and his o2 level was terrible. After everyone consulted, they stuck him with another IV for another antibiotic, and then sent him for another ct scan to see if blood clots were forming because of the port they installed yesterday. They also decided that his situation was bad enough to move him out of his room and send him down to CCU :( where they could monitor him more closely and more aggressively treat his myriad of symptoms. (you'd think being this sick, Jim's weight would be down; but down in CCU, we learned that Jim has actually gained 20 lbs from all the ensure he's been drinking LOL)
We've been living in that room so long, that it took me a couple of trips to move my pillow and blanket, Jim's clothes and my travel bag of clothes and stuff. I told the nurses, it felt like I was running away from home. ;D
Luckily by the time they transported him for the scan, they had gotten the fever back down so that the chills stopped. For several hours, I followed while they moved Jim around the hospital - without any lunch, no cigarette breaks, and buzzing off some cold medicine. :o
After getting Jim settled into CCU and doing so-so, I went over to my Ohio mom's for dinner (and I really needed some food by then and we had big ol' juicy burgers) and birthday cake (mmm, sugar buzz!). Oh, and my "mom" got me 2 muffin pans as a gift, so I can give the ones I've been using for nearly a year back to her. ;D
Of course, I made another trip back to the hospital and had a little good news and bad news again. The good news was that Jim was a little more alert and watched a couple episodes of "friends" and nearly all of "house" before getting very tired again. The bad news was that his body, from about mid-chest down to his feet, is quite puffy, and there's blood in his urine. :( With all these problems now, I don't know how Jim is going to be when they start the chemo within another day or two. :'(
It was very hard tonight explaining to Jim that I needed to leave. I explained that he hasn't seen me crying, because I'm trying to stay strong and supportive for him. The doctors talk like all this will still get better, so I've been trying to stay optimistic so that he would feel good about fighting this off. I made sure that he understood that I still think he's got a chance, so I need to take care of myself too, so that I'll be able to assist him when he does comes home. I was leaving him in the best possible care of the hospital and didn't want to be in the way of the nurses if he had another bad night.
A week ago, I drove home in a huge snowstorm, afraid I was about to lose Jim. A week later, after an afternoon of rain melting the snow-pack, I drove home in "thick as pea soup" fog, still afraid that I'm about to lose Jim.
mikie
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Mikie--
Sorry about the turn of events with Jim. Still no results from the previous biopsy? No clue to anything yet? My heart goes out to both of you but mostly for Jim and the agony he must be going through. And I can imagine how it is affecting you in return, your stress levels must be through the roof. Please take care of yourself, we don't need both of you sick. You both are in my thoughts and prayers... :-* :-* :-*
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Mikie, I'm so sorry to hear about this. Keep on hanging in there..
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Damnit Mikie,
This is just the worst rollercoaster right now for you two and there are too many damn drops and not enough highs. A friend just told me something in an email and I want to quote it to you because i think it says well what all our thoughts are for you and Jim right now, "I would say you're in my prayers but somehow prayer doesn't meet up to my thoughts for you."
Thinking of you and Jim.
Mark
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You are in my thoughts. The only thing I can say is that you are doing well to take care of yourself and be there for Jim.
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Prayers are always good, just depends how you do it or how you believe it I guess.
But anyways.. you ARE in mine.
Sharkie
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Whether it your prayers or your thoughts, it's all positive energy wending it's way to Jim. At this point in the game, we'll accept it all with heart-felt gratitude and appreciation. ;) :-*
The nurses tell me that Jim didn't have too bad of a night last night. They got him shaved and washed up since he had been too sick for me to do that the last couple of days. Being clean always makes you feel better. ;)
Still no day set to start chemo. They're hoping to get him a little better first. The ID doc pointed out that as soon as his viral load starts dropping from the meds, that should help him start to feel better too. (Goodness knows, I remember how sick I felt with a vl of 300,000). The docs are also optimistically saying that if he doesn't get any worse again, that maybe tomorrow they'll move him out of CCU and back up to our old floor. (though another day would give me a little more of a break. I don't worry near as bad being away from him right now when he's being watched by his own personal nurse.)
He had a couple pieces of toast, milk and grape juice this morning and had nearly the whole bowl of chicken broth at lunch. After that though, they shot him up with a pain med and he zonked out. Even though I've gotten some decent sleep myself the last couple nights at home, I couldn't stop yawning today, so I went home, curled up on the couch with the puppies, watched some tv and zonked out myself.
About four hrs later, Jim woke up very disorientated and upset. He called me but just wasn't awake enough to understand that the call went through. By the time I got back to the hospital, he was much more alert. (the nurses decided to half the dose of the pain med the next time he needed it, since it messed him up so badly) He ate a grilled cheese sandwich and a bowl of chicken broth today which was very heartening to see.
So this wasn't too bad of a day, all things considered.
mikie
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Glad it was a better day for both of you. Hopes Jim will get out of CCU and back into his own room.
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I'm glad it was a better day. Hopefully things will continue to improve from here.
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mikie - really glad to hear that Jim is doing a bit better - it is heartbreaking to read your account of Jim's struggle, but at the same time, very encouraging that he is improving.
will keep the good thoughts coming from here...
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Sorry I didn't get an update online yesterday. It wasn't such a good day for me.
The day started with Jim calling me several times asking me when I was coming to the hospital even though the night before we had decided I would be there by noon. I kept telling him I'd be there soon. What I didn't tell him was that I woke with a 102 fever and was trying to get my temp down, so that I felt well enough to drive. I made it to the hospital by 11, and I had hardly gotten into the room before Jim started fussing at me.
I should interrupt my story here to bring you up to date on Jim's condition. His fever had stayed down close to normal for about 24 hrs finally. From the waist down, his body is quite swollen from a buildup of fluids. They had started a transfusion of 2 units of blood, so there are enough hanging iv bags now to require two pumps and two iv stands. Also Jim was pretty upset because the cancer doc had stopped by and, once again, mentioned about sending him home soon. Of course, he is in no shape to come home yet, so I believe Jim misunderstood the doctor, thinking he is about to be sent home to die.
So I arrived, and Jim started fussing. He actually said that I haven't been there enough for him through this crisis, and that he was upset with me for staying at home so much. I bit my tongue and didn't say anything until the nurses left the room. I pulled out my thermometer and popped in my mouth. In response to his questioning look, when the thermometer beeped, I showed him that my temp was up to 101 again. I calmly explained that for the last three days I've been having a fever myself. I explained that the nurses might very well not allow me to visit him if they thought I was sick. I explained that every time I've gone home, I've barely had the energy to feed the dogs much less myself, and that most of my home time is spent sleeping so I don't get sick. I explained that if I ended up in the hospital too, then I sure couldn't be any help to him.
Lastly I explained that unless the doctor said that he was being sick home with hospice care, then he wasn't being sent home to die. Personally, this cancer doc just doesn't know what he's talking about. He talked about sending Jim home a few days ago to continue recovering before starting the chemo - that was the day before Jim got sent to CCU, so obviously this doctor isn't paying attention to the big picture. Jim just isn't well enough to come home yet.
What I didn't say to Jim, was that when I lay in the hospital thinking I was going to die with pneumonia those two times, I was all alone. I didn't have someone to hold my hand. I didn't say that he should suck it up and tough it out. I didn't tell him that I've been missing meds so I wouldn't puke and could be there for him. I didn't tell him how much his words really hurt me. I didn't tell him how absolutely exhausted I am. I didn't tell him about how the dishes and clothes are piling up, as I just don't have the energy or time to do anything when I'm at home for a few hours each day. I didn't talk about driving through the freaking blizzard. I didn't tell him about how I still worry that he'll never get out of the hospital and I'll be left without a partner and without a home.
Tomorrow will be the 14th day that Jim has been in the hospital.
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As you can tell, I have been experiencing some anger later. Towards everything. Why in the world do nurses wake you up to give you a sleeping pill? Is it a rule in a hospital to not let anyone sleep longer than 2 hours at a time? (Isn't that torture??) Why do all the old people drive the wrong way in the parking deck? Why is the McDonalds at the hospital the slowest, most ill-run I've ever been in? Why did that bitch cashier not give me back my 4 cents when I gave her 11 dimes to cover the $1.06 cost of a small coke? Why hasn't the city patched any of the freaking pot-holes, no, make that, craters in nearly every road in town? Why has my 10 am mail delivery been coming after 12 noon since the day after the snowstorm?
So I was still a bit perturbed when I went to the hospital this morning. I thought I'd have a change of mood when I arrived and saw Jim up and sitting the recliner. Jim had been doing a fair bit better this morning and had been in the chair for over an hour. I was, and am, quite pleased to see him much more alert, awake and moving about after the last few days. However, not long after I got there, he was ready to go back into the bed, and he promptly feel asleep. >:( Argh! As glad I am to actually see Jim in a better condition, I really didn't need to be there to watch his sleeping and could have stayed home longer.
Although I know I've been complaining a bit these last two updates, please don't misunderstand. Many of the times that I've been at Jim's bedside was no trouble to me. Many of those times in the last two weeks, I've been there because the situation was truly that dire. I would have been more distressed to have been at home and found out that I was not by his side if he had passed away. However, this has been a very trying time, and I guess I'm just running low myself and running out of ways to juggle all of this.
About the time I was fed up enough to leave this morning, my doctor stopped by to talk with Jim. He wanted to tell us that there had been some concern about Jim's kidney functions that could have been caused by one of the HIV meds. However, the results were already coming back better, so this is an issue that needs to be monitored some; but isn't a problem. Then he gave us some GOOD news - because Jim's numbers (heart, bp, kidney, potassium, etc) were all improving, they were transferring him OUT of CCU. WooHoo! ;D So after getting him settled into his new room (on floor 2 this time), I'm home for the afternoon and I'll probably go back for a few hours this evening.
So you don't worry too much about me, I should let you know that I have been eating better the last two days, I have taken my meds, and I'm neither congested or running a fever today.
I guess what I really want you to take away from today's update, rather than my griping, is although Jim is really still quite sick, two weeks later and with chemo in his future, we are finally seeing a glimmer of recovery for the very first time. ;D
mikie
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Hi Mikie
Glad things seem to be looking up a little today! Being out of CCU is a good thing!
I totally understand how you are feeling, about him being upset with you. Sometimes, when we are alone, fear, anxiety and frustration leads us to lash out at those whom we love and who love us the most. Sounds like you are doing a good job of compartmentalizing everything, and keeping the big picture in mind.
Honey, he knows you love him and that you are there for him. You just happen to be the only one 'present' for him to complain to and bitch at. I'm sure he's very frightened about his situation. Who wouldn't be? Sometimes loving someone means turning a deaf ear to some of the hurtful things they say to us out of fear.
Let's hope things dramatically improve over the course of this week.
Love, hugs, and prayers......
Alan
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Mikie,
Good news indeed about the move out of CCU. Take some heart in that good movement.
You are a better man than I to be so calm in the face of not only Jim's illness and uncertainty but his lashing out at you from pure fear and not knowing who else he can expose his frustrations (no matter how inappropriately voiced) at you.
I am worried however about you and you not taking care of yourself. You aren't going to do either you or Jim a favor by being hospitalized yourself.
Please try whatever you can to get some care for yourself - even if that means angering or even hurting Jim's feelings to a degree.
Mark
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Mikie, glad to hear some good news. You guys continue to be in my thoughts.
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Mikie
Yes the lashing out is alarming and hurtful.
You know my story, so I don't need to get into it but...
One day a wonderful nurse pulled me aside (when the tempers were a little hot) and told me that when someone is very very ill, it's normal (and appropriate) for them to be angry and be nasty with the ones that are caring for them and love them the most. She continued by saying it was because they are scared and feeling out of control. You are the one thing steady and constant in his life at this moment, just remember that and keep going.
Needless to say, I was able to handle it after that.
take care and be strong
Sharkie
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Glad that Jim is feeling a bit better. Sorry to hear that you haven't been but knows why it is taking it's toll on you. Stay strong and try to keep your head up.
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thank you so much for the encouraging words, my friends. Part of me understood that Jim didn't really mean what he said (that's why I didn't lash back at him); but part of me was still hurt enough that I had to vent and get it off my chest. Your feedback not only gave me a little more insight about the situation (it's always easier to be objective from the outside ;)); but also helped ease a little bit of the sting I was feeling. (it also made me think back to those college pysch courses I took way back when. LOL)
It's funny but I don't feel "brave", "strong", "wonderful" or any of those other kind words so many people have used about me lately. The lesson I learned from losing Randy has been the only thing that has gotten me through so many hard years and has given me the strength to deal with this crisis: there's only one problem that can't be solved - and that's death. Anything else, and I do mean anything, with some effort, patience and persistance can be made better.
I'm hoping now that the doctor's efforts, my patience, and your persistant thoughts, prayers, and well-wishes are finally turning the tide.
I visited with Jim several hours this evening (I wanted Taco Bell for dinner anyway, and it's halfway between our house and the hospital), now that he's all settled into the new room and another new batch of nurses. (Lord! I'm going to have to bake an even bigger batch of muffins this next time [the batter is ready to bake every ten days] to have enough for the great people in CCU and now Floor Two. LOL) I'm very happy to say that he was still doing better! A physical therapist was in this afternoon, and had him up and walking a few doors down the hall and back. Plus after all those antibiotics had made him quite incontinent while in CCU, it was good to see him be able to get out of the bed and hobble over to the potty chair. (Hey! you take the victories where you can!) With Jim so much more alert now, we finally got around to going over the bills that we had planned to discuss on the day he ended up in CCU.
Even though Jim was scared, frustrated and lashing out at me yesterday, tonight his true colors shone forth. Out of the blue, he apologized for yesterday (and I know that NO ONE has mentioned my gripes to him). Ah, there's that man I love! I didn't make a big deal out of it but explained that I understood why he said what he did out of fear, and that I also appreciated his apology too.
Although I'm very glad to have had some better news to pass along, please don't let us out of your thoughts and prayers just yet, as there still a long road ahead of us - and we still haven't even made it out of the hospital yet.
mikie :-*
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I just stopped by to let you know that I am thinking of you.
Joel
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It's funny but I don't feel "brave", "strong", "wonderful" or any of those other kind words so many people have used about me lately.
Who says we need your agreement in calling them like we see them? ;)
Your silent bravery and strength have been very apparent to all of us through this time.
I'm glad to read that Jim is regaining his sense of self and I wish the best for his continued recovery of strength.
Oh - and cut that Taco Bell shit out right now - your body does not need the additional stress of that crap "food" at this time.
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Just a short update tonight because I'm really, really exhausted today.
Finally after 7 weeks, Jim hasn't had a fever in over 48 hrs now! ;D and he's doing as good as he was yesterday. WooHoo!
I spent part of the afternoon with one of the hospital social workers getting stuff together to run the gauntlet of applying for medical aide to cover the expenses and medicines. A bone marrow biopsy is scheduled for 8am, and they decided that Jim's kidney function numbers are in the right range now - so they'll be starting chemo tomorrow.
Goodnight all, I'm heading to bed before I fall asleep in front of my monitors. ;)
mikie
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Hope you can can get a good nights rest Mike. I wish Jim great success with his chemo.
Paul
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Mikie, thinking of you and Jim as he starts the chemo today. I hope things go as well as can be.
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Glad to hear Jim's fever has broken and he is doing well enough to start chemo. I know you are still concerned with bills and stuff but remember to take care of you. Maybe I missed it but has your ID doc said about you? I remember you saying you had a fever and was hurling. Are you feeling better? Wish I was there to help you out even if it was just playing maid every little bit helps. Take care of yourself, Boo...
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My hiv has never liked mornings much so I wasn't at the hospital yesterday when Jim had the bone marrow biopsy done at 8 am. Since they did the procedure in his room, I would have had to probably sit in the hallway anyways, so it's just as well I wasn't there then.
Jim was pretty drugged up afterwards and zonked-out, so I got to talk to ALL the doctors myself for a change. (it was like a parade of doctors going through Jim's room for about an hour. LOL) The kidney doc said his numbers were continuing to slowly improve, my ID doc talked to me about the current meds Jim is on, and finally the IV nurse told me about the chemo that was going to be started up later in the afternoon.
So while Jim slept off the meds and got a 4hr IV drip prior to the chemo, I got some lunch and some rest. Thank you all for worrying about me too. I've been getting a better grip on things the last couple of days. I have been eating better (even if some people don't think Taco Bell is any good. LOL). I've gotten in some naps, along with 8 hrs of sleep each night. I haven't had a headache or fever in the last two days. And I started taking my meds again. I've still been really tired; but there's nothing I can really do about that but keep trudging along. Maybe in a few more days, I'll be able to bring my honey home and the both of us can just lie around, do nothing, and go nowhere.
Maybe I missed it but has your ID doc said about you?
By the way Queen, my vl went from 75 to 189. I've been having these kinds of blips over the last year or two, so the change really wasn't anything to be too concerned about. Stupid lab didn't do a tcell count though, so we're just guessing I have the same 250 or so that I've had for the last couple of yrs.
I went back to the hospital at the appointed time to be with Jim for his first chemo treatment. Again, I was pleasantly surprised at how nice and helpful another nurse was towards us. The IV nurse explained many things about Jim's port, the chemo treatments, and what Jim might expect to encounter in the next few weeks. It took about half an hour for the nurse to push the meds into Jim. After hanging around another couple of hours to see if Jim would have any effects from the chemo, I called it an early evening and went home to eat and watch Idol.
I fell asleep on the sofa and never saw more than about halfway through Idol. I woke up quickly when the phone rang around 1030 though. Thankfully, Jim was still doing fairly well (no side effects after 6 hrs WooHoo!); he just wanted to let me know that they have moved him to another room again. Now he's up on the 8th Floor where they actually handle the chemo patients.
So things are moving forward. ;D
mikie
ps I also got things started with welfare and Social Security. Tomorrow, they're planning on doing more chemo on Jim.
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Another busy morning!
I started this morning feeling a little crappy as usual LOL (and I slept wrong my neck, so it was killing me!) However, I got in touch with Social Security and started that procedure (yesterday the hospital social worker got our welfare paperwork faxed off). I got a phone interview scheduled for Jim for April 2, which was good since I can't even say right now whether he'll be out of the hospital by then or not. Then a quick shower and it was time to head up to the hospital.
When I got to Jim's new hospital room, he wasn't there! They had decided to do an ultrasound on Jim's legs to verify that there weren't any blood clots contributing to the fluid being retained, swelling Jim lower abdomen and legs. Not long after he was returned to his bed, the parade of doctors began again. LOL
Also a rep from the local ASO showed up - which was good news, as they'll be able to help with the medical expenses, meds, etc. until welfare and SS come through. Jim wasn't really in a good enough condition to deal with all that after the doctors; but as I've been through the process myself so many yrs ago, I took the rep down to the family waiting area and we tackled the paperwork together.
Today's biggest problem though is Jim's mental health. Being on the "outside", I can see that things have begun to turn around (at least, that's what I have to tell myself and try to believe), even if there is still a long way to go; but poor Jim, after 17 days in the hospital, seems to be even more depressed - if such a thing is possible.
Of course, I'm not really "outside" this problem enough to be the help he needs for this issue. Not only don't I have the training to be able to help someone in this condition; but all this directly effects me too - and I'm dealing with my own massive depression because of what the situation is and still could be. (Props again to my ID doctor who was doing rounds today. Every time he visits Jim, the doctor tries to point out the progress that has been made and tries to bolster Jim's spirits.) Also, because I'm having to deal with everything, means that I can't always be "cheerful" enough to help Jim out emotionally. Being realistic and handling this crisis has meant that I've had to "compartmentalize" alot of my own emotions so that I can talk to the docs, sign forms, follow what's happening, and give care to Jim (helping him to the toilet, packing up for room changes, helping keep his hair brushed and him shaved). I'm sure in "business mode", I probably do appear to him to be rather "cold and unfeeling" at times. But I NEVER forget to kiss him when I arrive and leave, and to touch him (hold his hand or rest my hand on his leg) as much as possible.
Since this issue is just too much for me, I've done the next best thing - asked our friends for help. Of course, they've all been willing to help out since the very first; but there really hasn't been anything anyone could do. (I posted our address at the first and requested get-well cards, and now there's about a dozen cards traveling with him from room to room. My Ohio mom has fed me several times and been a good shoulder to cry on a few times - conveniently, her house is near the hospital and not far out of the way on my way home).
Today, I started calling around to get our friends to just call and talk, to lend Jim the support he so badly needs. Everyone understands that Jim hasn't wanted visitors (especially as sick and incontinent as he's been) and that between the meds and his illness that's it's a struggle for him to talk much; however, I think some friendly voices will be helpful. If Jim is going to overcome all this, we had to somehow work through the depression. He's got to feel that's there is some hope; he's got to try to start moving more; he's got to talk to people; and at least pretend that he's got a life to lead.
"Recognizing one's own limitations" (some more of that psych BS LOL I'll have to remember that and use it to impress my doctor when I go back the end of April) isn't always an easy thing to do - especially when you're a Picses who wants to help everyone and fix everything LOL; but I've been sick myself long enough to know that sometimes you just can't handle it all. So our friends are planning some calls to Jim over the next couple of days, and a few are coming over this weekend to help me get caught up on laundry, dishes, etc. (Some visitors at the house will sure help our poor dogs too as they try to deal with all this. The poor pups have been alone so much!)
Still no more fever for Jim today ;D, and more chemo is scheduled for Fri.
mikie
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I'm glad you've got friends who are going to help you, Mikie. It sounds like you'll really be able to use their help. Still thinking of you guys.
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Hi Mikie
I stopped in to see how you are doing and say hello. I am so glad you have the network of friends to help you. Its good. Keep up your spirits.
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Hi Mikie,
I have been thinking of you and Jim. Thanks for keeping us posted. I am so glad you reached out to your friends. I hope you are not getting anymore snow that is the last thing you need to deal with right now. Take care,
Snow
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Of course, I should have known that life wouldn't let me get by saying I couldn't do something. ::) During last night's visit, while we watched one of our favorite shows (Smallville), Jim brought up how worried he still was and how tired he was of being sick. I talked about my 4-day and 5-day stay in the hospital, along with Randy's 9-day stay. I told him that I could understand how not only terrifying a stay like that can be; but how soul-crushing tiring that long of a stay can be. I can only imagine how horrible he must feel inside as day 17 turns into day 18.
I explained how a week ago, when talking when our friends, I had guessed that it would probably be at least another week before he was released. Although those plans had been delayed by the 4-day stay in CCU, seeing the improvements already, I could see some light in the tunnel and could now hope that he might be released before the end of another week. We have a diagnosis now; the hiv has been treated for a week and a half; already one chemo treatment was done and another one would be done soon. Although things were still rough, things are moving forward and not backwards anymore. Results of the treatment might take some time but each day of treatment would be taking him further away from sickness or death.
I can't tell you that Jim's attitude miraculously changed last night; but after our talk and several calls from friends last night and this morning (bless them all! I put out the word and they came thru!), he didn't seem to be feeling as lost and adrift as he had been earlier in the day. Several more of our friends have called me and made arrangements for continuing the support calls throughout the weekend.
I was back at the hospital this morning and am glad to report that this is day four that Jim has not had a fever. ;D The bone marrow biopsy results had finally come back and there's NO cancer cells in his marrow. ;D Although he's still not eating very much, he has been eating some every day now. Jim was very sleepy while I was by his bedside but he did tell me that another chemo treatment won't be done again for 2-3 weeks.
Although I was there for nearly five hours, it wasn't until I was about to leave that he told me the most distressing news from his doctors this morning - he probably won't be released for another couple of weeks! :( Obviously he didn't want to talk about that, so I didn't question him about the reasons why; but by the time I got to the elevators, I couldn't help but cry. I know that his condition has gotten better during this last week; but another couple of weeks is going to seem like years!
Two days ago, we had another snowfall of almost an inch; but thankfully the recent rainy weather took care of that and had finally gotten rid of the almost all of the remaining snow from that big storm a few weeks ago when our hospital adventure began. Now, four to six inches of snow is predicted to fall tonight, so I might have an "interesting" drive in again on Sat. morning. I'll tell you, Winter can't be over soon enough for me. Maybe when Spring finally does make it to Ohio, I'll finally be able to bring my honey back home.
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WooHoo! Finally a day all around that was good (well, as good as can be under the current conditions. ;) )
After yesterday in which Jim was "kinda out of it" for most of the day, today was so much better. He was awake, alert, and more talkative than he's been in nearly two weeks when I arrived in the morning. He had eaten breakfast, and felt good enough to have the physical therapist walk him around the room a little and move him to the chair to sit up for a while. We even went over the bills and got checks written up before he started to tire out. At lunch (around 1:30), his pain meds kicked in and he zonked out, so I headed home.
At home this afternoon, my friend Angie and my Ohio nephew Ritchie came over to help me out at the house. While Ritchie vaccuumed the downstairs (and he did a better job than I do!), his mom handled up my sinkful of dishes. I finally got to put away the clean clothes so I quit living like a vagabond out of the laundry baskets - even though I still have my travel bag all packed with the essentials of living at the hospital. Then I got to spend some time (on a very nice sunny, but chilly day; after the 1/4 inch of snow melted from this morning) in the big backyard playing with the dogz. While Angie was mopping in the kitchen to finish up and about the time I was getting tired, Ritchie came out and played ball with the dogz some too. It was an excellent, if not restful, afternoon.
Back at the hospital (with some more Taco Bell. LOL Hey! Jim has always been a fincky eater; so since it's just me getting food, I getting all the stuff he won't eat. LOL) Jim was up and alert again. WooHoo! He felt good enough (and was getting another blood transfusion due to low platlets from the chemo) that we got his hair washed up, teeth brushed, and him generally spruced up. They wouldn't let me shave him again (well, to catch the spots I missed the other day) so he wasn't accidentally nicked and bled to death or something horrible. (So, okay, the scruffy look is hot, and we'll just leave him unshaved a day or two. LOL) After that, we both stayed awake and watched the Matrix before calling it a night.
Hopefully, today's transfusion will help tomorrow be another good day as we have made plans for my Ohio mom and a good friend of ours to come up for a short visit with Jim. I think Jim is a little fearful of seeing anyone; but I think getting over this hurdle will help him move forward. The phone calls have already been helping.
I'm just so very excited still that today (day 19) was finally the first day without any more new bad stuff happening. It's about time for some good to be happening. ;) ;D Your thoughts and prayers are finally kicking in! :-*
mikie ;D
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Mikie,
Glad to hear you such a good day and that Jim was in good spirits.
I love Taco Bell every once in a while too ;)
Snow
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Sounds like a much better day for you guys! Was good to read after all these days. Here's hoping for many more days like today while you go through this~
Paul
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Glad to hear this Mikie. Hopefully things will continue to go upwards.
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omigosh! Two good days in a row! I'm going to get spoiled. LOL
Jim was up and out of the bed by the time I arrived this morning. Things were going well (kidney numbers and sodium levels are back to normal and the edema is starting to go down and his legs are nearly normal looking again). So well in fact that the docs have changed their opinion and are saying that he "might" be able to get released by the end of this week. WooHoo!
Things got a little touch-n-go for a while though. After all his exertions this morning, Jim suddenly got very tired about the time our friends were supposed to come up and visit. "Not to worry, my love", I told Jim. "They'll understand if we postpone their visit for a few hours. It was still early in the morning and they weren't really ready to visit yet anyway." Jim zonked out and after a 45-min power nap, suddenly woke and wanted to know when our friends were arriving. LOL They were just on their way at that time, and while we waited, several more of our friends called to wish us a Hoppy Easter and see how Jim was doing.
All the phone calls lately, and the visit from my Ohio mom today, really have done a world of wonder for Jim's psyche in the last few days. Being more alert and able to tackle this problem has helped him alot too.
After his pain meds kicked in, I left for the afternoon and went over to my Ohio mom's for an Easter feast. I was soooo stuffed, and soooo sleepy afterwards; but I still got two loners and four euchres to make my team the winners! Tucking a big bowl of banana pudding (with lots of nilla wafers!) and a slice of pecan pie into my hospital survival bag, I had something to munch on while Jim and I watched "Shrek" back at the hospital this evening. During the movie, we had a conversation that got a little deep for a while (facing up to your own mortality as you lie dying in a hospital will do that to you. been there, done that myself a couple of times); but it sure felt good having him take an active part in worrying about what OUR future is going to hold.
"Our future." God, what a wonderful thought to have after having spent these last few weeks worried to death about what "my future" was going to be if I was going to be alone and widowed for a second time.
hoping I can keep reporting better news this week, and bring this thread to a conclusion by bringing Jim home,
mikie ;D
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We're hoping right along with ya Mike!
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I will keep my fingers crossed, love to hear good news
Lucas
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Mikie
I'll be hoping right along with all the rest of you.
Joel
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We're all hoping for the best, Mikie.
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Glad to hear things are getting a bit better for Jim which means things are going better for you. It's great that you have friends that are supporting the both of you, it must really help I'm sure. Keep your head up!!!!!
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On Day #21, Jim must be feeling better because he's starting to complain. LOL The food is bad, the nurses are slow and loud, they won't let him sleep, and he's tired of being in a hospital bed. That's good to hear cause those are the the reasons for him to push it with the physical therapist so he can get the hell outta there.
They removed the foley cath today and had Jim up and sitting, and then up and walking the hallway. For the second day a row Jim ate a little something for all three meals of the day. WooHoo! Every step and every bite of food moves us closer to getting Jim back home.
I'm pleased as punch to tell you all that we've has three good days in a row now! ;D
mikie
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Good news Mikie. Here's to more good days!
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LOL The food is bad, the nurses are slow and loud, they won't let him sleep, and he's tired of being in a hospital bed.
LOL! I don't blame him, I never understood why they would wake you up ,it seemed like every 2 minutes to do whatever they had to do. That used to drive me batty.
So glad to hear things are going better!
Snow
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I never understood why they would wake you up ,it seemed like every 2 minutes to do whatever they had to do.
One time (the time with PCP), I checked myself out of the hospital AMA. I knew if I could just go home and eat MY chicken/rice soup and sleep in MY own bed, uninterrupted, that I would finally get well. Thankfully, that's just what happened! I can only imagine the sleep deprivation problem after 22 days in the hospital. LOL
You know, Jim's stay in the hospital has been making me totally re-evaluate how I think about my own health. I used to think my life had been miserable with those two hospitalizations, and for how sick I have felt through the last 15 yrs from the meds and this virus. Now I find myself in the unbelievable position of actually being the "well" partner (because lymphoma trumps puking over meds any day, in my book). Walking through the hospital halls, seeing those people in the beds, hearing their stories (25 days in; 45 days in; chemo, radiation and the resulting side effects) has really made me re-think just how "bad" things have been for me. That isn't to say that I still don't wish I had been lucky enough to have the "pill-a-day, chronic, manageable" version of this disease, rather than losing a partner before we could even get 10 yrs together, having this aids diagnosis and dealing with multiple harsh drug regimens; but I could have been soo much sicker. In that perspective, I have to stay that I've been pretty lucky so far to have only suffered as little as I have.
I'm hoping that, in the long run, my "new and improved" outlook about my situation transfers to Jim some, giving him the positive attitude he'll need to get through this crisis.
mikie
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Today wasn't bad day; but it wasn't quite a good day either. Jim is having a new problem. He had been awake most of last night with pain in his lower chest (in the general area of one of those masses). They ran an ultrasound this morning and doped him up pretty good. Later in the day he was doing much better; but by bedtime he was hurting again. Hopefully this is a minor fluke and won't derail his release "by the end of the week" as the doctors were saying for the second day in a row.
On the emotional/mental side of things, Jim has been doing much better in the last few days. He's been alert and awake much more than his first two weeks in the hospital. Plus he's beginning to talk about what needs to be done. It's going to be very frustrating and very hard for him to learn to think in very short-term goals (what should he do? well today he needs to try to eat at every meal, do all the physical therapy they suggest and "try" to get some sleep to aide in the healing. what should he do next week? Well, we'll worry about what to do next week when next week gets here. The only worry we have for today is to tackle today's problems).
I thought we were going to have another problem; but that worked out nicely in the end. After my morning trip to the hospital, I checked the mailbox and got a letter about Jim's appt with welfare. Postmarked yesterday, the appt. was scheduled for TODAY at 230 - 30 minutes after the letter had finally gotten delivered. Some more of your thoughts and prayers of support for us much have come though, as his case worker turned out to be MY case worker too. I explained that he was still in the hospital and we made arrangements for the case worker to handle BOTH Jim's initial application and my yearly renewal at the same appointment. We've rescheduled for Apr 3 (the day after his SS phone interview), in the hopes that Jim will be out of the hospital by then. If he isn't, then we're both scheduled at my appt. time Apr 17th - and he better be out of the hospital by then! ;)
mikie
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LOL. When I was prego with the trip lets, I was in the hospital for pre-term labor for a week at 25 weeks which as you know was complete hell (well, you might not know about the being pregnant part :) ). Luckily, I was in a study and had a wonderful nurse advocating for me and she talked the docs into letting me go home on complete bedrest. I made it another month at home.....I would have gone completely nuts if they made me stay in the hospital that whole time.
I am so glad you have a new outlook, Mikie. I think it will help you and Jim a lot more than you realize.
Hope you are both doing well!
Snow
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Mikie, I would just try to assure Jim that there will be pain with what's going on, but it will pass. Which, of course, doesn't always help when someone's in the midst of pain. I'm glad his mentality is still going upward.
Yes, short-term goals definitely. I do that myself, and I'm not ill. Yesterday's history, tomorrow's a mystery and all that. Continued luck to you guys! :-*
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Well, I almost got to report that this was a GREAT day; but things didn't work out, so it's just a GOOD day instead.
When I called Jim this morning, I got the great news that he was going to be released from the hospital! However, after the physical therapist walked him down the long hall and had him take a few stairs, it was all just a bit too much for him. Luckily he didn't throw up in the stairwell like he thought he might do; but instead of walking back, Jim got a free wheelchair ride. That little incident (plus another onslaught of that pain he's been having lately) put the brakes on going home today, so that they could work with him a little bit more before making the big escape perhaps tomorrow. The occupational therapist came by and had Jim sitting up for while. She gave him several nifty gadgets and showed him how to use them to aide himself when he gets home. I watched while he got his socks on and off and, for the first time in over two weeks, pulled on some pants.
Back home, just in case the hospital doesn't come through, I borrowed a potty-chair and a walker to help once Jim is home. I vacuumed, shampooed the carpets and rearranged the furniture to turn the living room (with the king-size fold-out sofa bed) into our temporary living/sleeping quarters while Jim recuperates. (I well remember that it took me a month of recovering just from pneumonia to finally go back up the stairs to my own bedroom at my old house). If need be, I've made arrangements with some friends to help rearrange the spare room downstairs (by the bathroom) from our card-playing room back into a bedroom, in a week or two after we see how things are going. I also put a call into the onocologist to schedule an appt., and called the ASO to see what we need to do to get Jim's HIV meds until he gets approved for a medical card.
Whew! I'm tired from handling all that stuff; but I did have that nervous energy (from hoping to bring him home today) to work off anyway. All-in-all, I feel much better now about bringing Jim home tomorrow having gotten all that stuff handled. I know Jim needs to stay in the hospital if he's still having enough problems; but I'm really excited about having him back home. I found myself crying again, for the first time in several days, just thinking about how happy I'll be to have him at home. (gosh! I'm just a mess, aren't I? LOL) Now Jim just needs to decide what he wants for dinner his first night back in case I need to make a run to the grocery store.
hoping that 24 (days) is the magic number,
mikie
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Mikie, I have only today come upon this thread, I've been so deeply moved and inspired by your strength through these past weeks. I will be sending you and Jim my good thoughts and energy.
jd
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Mikie, as well you know, sometimes the healing process is not as fast as we hope it would be. But, every day it sounds like there's good progress. Best wishes to you and Jim in the upcoming days.
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you are far from a mess, my man! Shampooing the carpets?? ;)
We're all still here with you two. Here's hoping Jim goes home soon,if not tomorrow!
Paul
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I will be sending you and Jim my good thoughts and energy.
all thoughts, prayers, vibes, and pagan chants are always welcome ;) if for no other reason than they help with my peace of mind. :-*
Regardless of whether Jim gets released from the hospital 2morrow or 3 days for now, we have a hard road in front of us - getting medical coverage assistance, keeping up the bills without Jim's income, getting new prescriptions - not to mention chemotheraphy for months to fight the cancer. But I've been in this struggle before (with Randy, with myself, and even with 2 of my spaniels that had to have cancer surgery) and had a fair amount of success (I'm still here 9 yrs after the last bout of pnuemonia, and each dog survived for another 3 yrs) so I still have some hope to win this battle too.
Just knowing that so many people are keeping us in their thoughts gives me the encouragement to keep up the fight.
sometimes the healing process is not as fast as we hope it would be. But, every day it sounds like there's good progress.
ah, as it was at the beginning of this crisis, the "waiting" is always the hardest part. ;)
as much as i want him home, I can only do "so" much for him at home (no IV pain killer here ;D). if he's still "that" sick, then he's still where he needs to be. The last thing I want to do is bring him home to turn around and rush him back to the hospital. I've got things handled as much as possible, most appts are still a week away, and I've got all those games and things my family sent for my birthday back on the 14th (what a wonderful gift that has been! I must remember to do that for the next person I know in the hospital ;) )
What was it I said earlier in this thread? That it takes patience too. ;)
Shampooing the carpets?? ;)
the snow has melted, the ground is muddy, so the cockers are bringing in quite a few dirty paw prints (3 dogs x 4 legs starts to add up to alot of paw prints! LOL). Plus ever since my bouts of pneumonia, I've had that germ-phobia thingy going on. A clean house doesn't make you sick. Speaking of which, I should go spray some more Lysol around, just in case. ROFL
Hugs to you all!! :-*
mikie
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It takes a lot of bravery to be productive, cheerful and healing. I admire you and wish you and Jim well. Please take care of yourself too.
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[img]Honey you are far from being a mess! You sound just like my mother when we came home from the hospital for any reason! Clean the house change the beds shampoo the carpets etc... You are a wonder life partner. Is that not what is is all about. You & your partner are in my thoughts a prayers.
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The house is still clean today; but the dishes were starting to pile back up. You'd think there was a family of five living here with all the cups in the sink. LOL But that's one of my "few" faults - I get a clean glass each time. Another fault is that I drink over 2-liters of Coke a day. But that bad habit turned out to help make two great Summer pool parties. So I won't be giving up either of those bad habits anytime soon. ;)
Pooltag is a crazy pool party (started on Jim's 50th bday) based off Redbull's Flutag. Our friends and us build themed "rafts" from 2-liter bottles and duct tape, add some music and costumes, and the object is to sail across the pool. Hilarity ensues! ;D Read all about it at http://reigningpages.com/pooltag
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But back to the present when holding Pooltag3 is still debatable. :(
Today was another good day! Jim and the doctors decided this morning to wait until Fri to try for a release again. So today, the therapists have been in hard-and-heavy. Although I can tell that he's frustrated, tired, and in pain, my Jim has been putting up a pretty brave face and doing all the exercising. I can hear the change in his voice as he talks about how he will do the activities so he can go home 2morrow. ;D
Making my inner Pisces happy LOL, I ended up in the hallway and the elevator with the physical therapist. Jim hadn't been too nice to her over the past few days. I apologized and told her I could understand how tough her job must be. I made sure that she understood how much "I" appreciated her work with Jim. (I just haven't had the time to bake up more muffins; but I'm going to have to make sure she gets some of them too. ;) )
I finally got a call back from the oncologist scheduling a temporary appt. for 2morrow at 1:45. I explained that we weren't certain Jim would be released in time, and may have to reschedule for the first of the week. I am concerned that Jim won't feel up to an appt that soon anyway; though when I called him, he said he felt much better and believed he could manage the trip to the doctor. I'll think we'll see how things go first 2morrow - a couple more days of recovery over the weekend would probably be more beneficial first. (that'll also give me more time to figure out how we're going for pay for the doc visit ;) )
I'm still eating and sleeping enough (though it sure doesn't feel it!). I'm back to 95% adherent to my meds; but was frustrated to puke today because of them. Sigh. :( But at least I waited long enough to get sick that the meds stayed down. Oh wait! I'm supposed to have changed my attitude, so just ignore that last gripe. LOL Of course, I'm still freaking, in the back of my head, about what the heck is going to be happening through the next few days and up to Pooltag this summer; but at least I'll be better prepared for whatever does come about. ;)
mikie
(who was a good Boy Scout, and still tries to "be prepared")
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Mikie have you tried a bit of med weed for all that puking? Its very effective.
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Mikie, don't even think about the 'next few days.' It's one day baby, just one day.
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The pool party sounds like a lot of fun.!! ::)
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I'm trying not to be too upset; but today sure didn't go the way we had hoped. It was definitely an emotional rollercoaster day. Just think, Jim and I love going to ride the coasters each summer; but I swear this is one ride I wish I could get off of.
Of course, my cell phone has been with my constantly through this crisis "just in case"; and my alarm was set for 8:30 as it has been for the last few weeks, so I can struggle to get myself together and get to the hospital by 10:00.
This morning my phone woke me up an hour early. But it was NOT the call I have been dreading to receive; instead it was Jim, sounding better than he has in three weeks, asking me to come in earlier this morning, as his release was scheduled for 10am. WOOHOO!
However, by 830, Jim had called back telling me to not get excited. BooHoo :( Some of his blood work still was low and they decided he shouldn't go home yet. ARGH! Since I was up and dressed, I headed on to the hospital. When I got there I found out that not only were his white blood cells very, very low, but his hemoglobin was dangerously low - so low that the doctors were worried about heart failure! So the doctors decided on another blood transfusion. With a lot of patients on the floor right now (and all very sick), and with Jim's port being clogged, it wasn't until late afternoon that they finally starting pumping the fresh blood into him.
Jim's roommate, an 86 yr old man with colon cancer who has been in the hospital about 5 more days than Jim, was having a bad day too, and was also getting blood. So there was a lot of activity going on in their room today - which is always a little un-nerving.
Because Jim is now at high risk of acquiring other germs, he's been moved back to a private room again. I thought that was cool - he'll be able to sleep better, and across from the nurses station they'll be able to keep a better eye on him; but Jim was under the impression that he was being moved into "solitary" to die. I had to have a serious heart-to-heart and explain that although things are quite dire right now, death is not that imminent. (Well, it still really is; but none of us can think that way or we'll never win this battle)
I should also mention that he's built up a tolerance to the pain med (dilaudid) and the 4 mg is now having no effect. :(
I spent nearly the whole day at the hospital with Jim going through the ups and downs. At dinner, I took a couple of hrs. to run home and feed myself and the doggies. When I returned, he was doing better physically and mentally, and was actually ready to just get some sleep. Back at home again, I have a chore to do (besides posting all my updates about today). I dragged the blankets and pillows down this morning for the fold out bed when I thought he was coming home. now I've got to lug it all back upstairs so I can sleep in my own bed. LOL
Up and down, up and down, down and up. Whee! What a horrible rollercoaster ride. I really want to get off now. ;)
Mikie have you tried a bit of med weed for all that puking?
shhh, don't tell anyone but my Ohio mom is my dealer. ;) Without the weed, I probably would have passed away yrs. ago with wasting syndrome, or maybe from puking so much through the years. LOL Believe it or not, I really don't get high too much, but a toke or two in the morning (and a few more throughout the day) usually is enough to make me NOT feel sick most days. Some of the other days, nothing helps. My doctor and I discussed this whole problem (back on the 13th during this crisis), and we decided that I'm just "stuck" puking 4-6 times a month. I guess that's the price I have to pay to have good numbers. It sure as hell beats puking EVERY day, as many many regimens made me do throughout the years. What's the Brokeback Mountain quote? "If you can't fix it, then you've got to stand it."
Mikie, don't even think about the 'next few days.' It's one day baby, just one day.
I'm trying Betty; but it's so very hard. During this crisis, I've HAD to consider what happens next so I don't end up on the streets. Hopefully, when this immediate crisis ends, I can worry about things just day to day for a while as Jim comes to grips with being positive and starts to fight the cancer. Right now I have to worry about everything. ::)
mikie
(who won't be watching BBM for a while cause he's already been crying enough ;) )
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Jim's roommate, an 86 yr old man with colon cancer who has been in the hospital about 5 more days than Jim, was having a bad day too, and was also getting blood. So there was a lot of activity going on in their room today - which is always a little un-nerving.
We all know hospitals are just ALL unnerving -- they tell you you can leave and then want just one more test, they change their minds a dozen times about how you are doing. >:( Jim is SO lucky to have you there with him to give him perpsective and love. I hope you can take care of yourself and stay strong through this.
Sending strength
A
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Mikie, I'm so sorry to hear of this latest setback. And just when things started going so good! Just try to do what's at hand and not get too overly-involved emotionally, if you know what I mean. I'm sending love you guys' way today. :-*
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Mikie
Sorry to hear that you had another set back. Hope Jim makes it home soon.
Joel
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Sorry to hear about Jim's setback too. But look at it as the hospital is crossing all the t's and dotting the i's.
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Hi Mikie~
Please forgive me for not seeing this thread until now. I haven't been posting too much lately.
I am so terribly sorry for the roller-coaster ride that the month of March has given you. I just read this entire thread and have thought back to when my husband was going through the same thing.
You are a trooper. You have shown unbelievable strength during this entire ordeal. I am only hoping that the two of you can be home together soon, hugging your dogs and making rafts out of 2-liter bottles.
You are both in my thoughts. BIG prayers are going your way, BIG prayers.
~ Cindy
P.S. - Loved the pic in the newspaper! I would let it go to my head if I were you, lol!
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shhh, don't tell anyone but my Ohio mom is my dealer. ;) Without the weed, I probably would have passed away yrs. ago with wasting syndrome, or maybe from puking so much through the years. LOL Believe it or not, I really don't get high too much, but a toke or two in the morning (and a few more throughout the day) usually is enough to make me NOT feel sick most days
Mikie, this is what is so fantastic about med weed. Its potent stuff that allows med users to smoke a lot all day if need be with out getting high. You need to be able to function. So being too high all the time would not help and perhaps you would not want to smoke because of that.
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mikie
(who won't be watching BBM for a while cause he's already been crying enough ;) )
Wouldn't you know it? ::)
Just before Jim was hospitalized, we switched from TimeWarner to the new ATT Uverse. I am now dvr-ing Pinky and the Brain, Voyager, and, since we have the LOGO network now (woohoo! gay TV), Queer as Folk. I finally caught up and each nite at 11 head to bed, to watch QAF and then zonk out at midnight. Last nite's episode? Ben hospitalized with pancreatitis and Michael (there are way too many "Michaels" in the world LOL) crying in the hospital hallway. Hmph! and I always thought TV was my friend. LOL
P.S. - Loved the pic in the newspaper! I would let it go to my head if I were you, lol!
I didn't want to mention it buuuut ;)
I noticed a little quip from this thread in the last aidsmeds email newsletter. :-[
So being too high all the time would not help...
oh, I wouldn't go so far to say that. ROFL If I didn't get high sometimes for the fun of it, I'm sure I would have to be taking some presciption of some sort to cope with the crap that I've gone through. ;) Thank goodness for my friends, and my blog, or I be seeing a therapist; thank goodness for the caffeine and nicotine that have gotten me through every day, and especially the bad days; thank goodness for the pot or I'd hardly ever eat, puke more than I do, and never get a moment of peace in my crazy head. LOL
And thank goodness for all the support from the people here. A step in the routine each time I come home (after letting the dogs out first and getting some Coke of course LOL) is to come check this thread. As I've said before, your support has been invaluable to me. Each day as events go by, I keep up my hope that, each night when I write my update, I'll be able to tell you kind people some good news. (As you can see, I've been trying to keep my sense of humor through this, as much as I can) It pains me to even bother you with my troubles (cause we've all got troubles, don't we?); but I appreciate that so many people have followed along for this very long month, and have sent out their good vibes to us. Your encouragement supports me to encourage Jim. Having been down this road before I know that it does take positive thinking to overcome a situation like this, if it can be overcome.
Today we were just riding along a straight part of the rollercoaster. The transfusion and injections of [insert some sort of medicinal name here] seemed to be helping, as Jim's numbers are slowly beginning to climb back up. The nurse explained to us that this situation is known as the "nadir". Seven to 15 days after chemo, you reach this low spot when the chemo has not only done a number on the cancer; but also on your blood!
Hopefully when Monday rolls around, and after 28 days in the hospital, Jim might be able to come home. Looking forward to that I've decided to go ahead and rearrange in the downstairs rooms to set up Jim's old bed. I explained how it wasn't to shut him off; but to have a quiet place, away from the spaniels, that he can use to recover in and then nap in, when he's not feeling good from the chemo in the next few months. He explained how he wasn't happy at all that I'm making all sorts of decisions like that; but that he also understood that I was taking care of him and he would have to put up with most things being out of his control for a while. (As a LEO, not having control is the worst thing in the world. LOL) Poor Jim keeps asking what "he" can do to make things get better; but like trying to raise your tcells, it's something that just happens or doesn't. ;) There's not much to do except hope the meds do the trick.
By the way, the older gentleman back in Jim's old room still isn't doing too well either. His wife and I compared notes and situations for a while in the hallway, while they did a portable x-ray on him and Jim and the therapist walked partway down the hall and back. Unfortunately, that image, of Jim tottering in the hallway pushing a walker, sent me back into yet another hospital bathroom crying.
mikie
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Oh Mikie, it must be painful seeing Jim in that situation. But, every step he takes is a step towards his recovery. Just take care of yourself. If you need to smoke, smoke. You're doing the best you can and you guys have my love.
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I think we're going through corkscrews on the rollercoaster today.
This Morning
Being a Sunday, they weren't about to release Jim today. LOL His blood counts, while still climbing slowly, still aren't good enough for him to be sent home yet anyway. When Jim isn't feeling any pain, or not in la-la land, he seems to be doing okay. Today, he AND I took a stroll down the hall and back. He was a little wobbly a few times; but got a kick outta waving to the older couple back in the old room.
The doctors said (once again) that perhaps he might get out tomorrow. I think I'll wait until hearing about the blood results in the morning before I get too excited this time. ;)
This Afternoon
We didn't get to set up a bed last night; so I was hoping to get that done this evening. Too keyed-up to rest, I starting cleaning up the two rooms and getting the bed parts together. I sure wish I had brought the single bed over from my old house; but as it hadn't been used in 7 yrs, and we really had no place for it over here at Jim's house, I left it behind. Silly me for thinking that any of this might be easy. LOL As I started getting bed pieces together I realized I have a king frame with no slats or box springs, and a single frame with a base but no mattress. I called nearly everyone I know; but no one has an extra single mattress, so the bed plans are on hold until I figure out what to do.
This Evening
I must say too that I was actually a little leery about bringing Jim home tomorrow (and I think he's worried about the prospect too). My fears proved true tonight. When I went back early this evening, Jim was in a lot of pain and he had also been running a temp (100-101) for nearly the last 18 hrs. Only an hr after the last pain meds (dilaudid), he was curled up in the fetal position, crying because he was hurting so badly. Because they hadn't given him a full dose of meds, they were able to hit him with a little more, and that seemed to help. Although it pushed him back into la-la land where it took me an hour to convince him that he hadn't eaten dinner, and to get him to finally eat some (a bowl of frosted flakes). I still didn't think he was doing so well after another half hr. When the nurse came to take vitals after the pain meds, I knew something was up. Since we're right outside the nurses station, I found out that several patients, including Jim, weren't doing very well and a few more nurses were being called in to assist. Within 15 minutes, a nurse was assigned to Jim and retaking his pulse/ox. Within another 10 mins, they hooked Jim up to the O2 and called his doctor about this turn of events. I stayed another hr, until he finally started to drift to sleep, before leaving.
Needless to say, I needed some comfort myself by this point. Stopping by my Ohio mom's, I got fresh onion rings, and a shoulder to cry on. I try to confine my crying to my house when it's just me and the dogs or in hospital bathrooms (LOL); but today was just too much. I know saying this will make you all worried; but after all these weeks, I'm really at my wit's end. I'm sure after some sleep, I'll be able to "butch it up" again tomorrow and muddle through; but tonight I think I'm losing my hope.
Moms are practical people though, so after some crying, I also got a solution to the bed problem - an air mattress! So 2morrow, I need to stop by Wal-Mart again. I had to buy an electric shaver the other day. Jim's blood counts are too low to allow him to use a razor and possibly get cut. I've still got a little cash on me, and my money will be coming in this week; but, on top of everything else, I foresee bad financial woes in the near future.
I have realized that in two ways this IS all different from what happened with Randy. First, Jim is not Randy. Oh Randy was moody too; but Jim is a much moodier guy, so he has a different attitude towards being sick than Randy did. I catch myself running interference with nurses, lest they think he's the hateful guy that he sounds like sometimes. And two, with Randy, I knew where things were going, and really had found some peace in it all; but this is much different. Really, either outcome is still very probable. It seems for every two steps forward, he takes two back - and that's getting him nowhere fast.
I've been thinking back to my little 3-legged cocker spaniel (Gabby) that I had to put to sleep back in December. I know I didn't do her wrong; but because of Jim, I didn't stick by my principles; otherwise I would have put her to sleep a week before, so she didn't have any pain at all. I know I can't, nor am I suggesting that we "pull the plug" on Jim; but I sure hope I'm not putting him through all this misery, if he won't survive much longer. Ah! There's the deja vu again, as I appeal to a Higher Power to help me know what to do to make the right decisions.
mikie ::) ??? :o :'(
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Sorry to hear the latest turn of events...
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Mikie, damn it, damn it to hell. I am really sorry about these latest woes. You know I've been following all this since it started. I'm still sending love your way. I'm hoping for strength for you to get through this the best you can. Just hang in there, baby. Tomorrow's another day.
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Don't really have too much to say Mike. I hope you can continue to find the strength you need to go through all this.
Just wanted to let you know we're here listening to you.
big hugs,
Paul
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... It pains me to even bother you with my troubles (cause we've all got troubles, don't we?); but I appreciate that so many people have followed along for this very long month, and have sent out their good vibes to us. Your encouragement supports me to encourage Jim. Having been down this road before I know that it does take positive thinking to overcome a situation like this, if it can be overcome.
Mikie, please know that you are not bothering us. You are in a place where many of us have been or will be at some point in the future. We just want to support you and Jim.
Strength to you both,
JD
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Rather than "torture" ;D you again with a big long post, suffice it to say, that today wasn't too bad. Jim's condition did continue to improve and all the docs are in agreement that it looks like Jim will be released tomorrow. I know I heard that before, but each time, we're closer to it really happening. ;)
The part I won't bore you with was how we had another little "tiff" this evening. >:( (I don't "argue" with my partners. I did that enough with my father and don't accept it in my life as an adult.) I read back through your previous replies when we had another brief "tiff" and your thoughts encouraged me again. Although Jim has been acting out-of-character quite a bit over the last three days (between the meds, the pain, the worries and sleep deprivation, is it any wonder?), he did show his true self, and called me late tonight to apologize for being upset with me. So you'll know, I didn't bottle up all my feelings; I chatted with a couple of my moms who, though they couldn't solve my problem, were definitely supportive.
Well, with a little luck, just maybe I'll get Jim out of the hospital before we hit the thirty day mark (tomorrow at 1pm officially ends day # 29). Keep thinking those happy thoughts and sending out those prayers for us. :-*
mikie
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hello mikie,
wow, this is one ordeal that you and your partner are going through. ive been reading this thread daily and want to send my condolences out to you and jim. thank you for sharing such personal matters. i hope this turns out the best for you. you and jim are in my thoughts and prayers.
d
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Mikie, I'm keeping my fingers (and legs) crossed. I hope this long, tough, ordeal is coming to an end (well, at least the hospital part). Please let us know what the outcome of today is.
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Most days I've come home and written up the happenings from the morning. Unfortunately, while many of Jim's mornings haven't been too bad, the afternoons (and sometimes the nights) have been problematic. Any of the good tales I've had from my first trip of the day to the hospital have been overwhelmed by the setbacks during my second visit of the day.
Through the events of yesterday afternoon and into this morning, I was actually very, very concerned that things were not going the right direction. Although the doctors have been assuring me that Jim's counts have all been getting better, I've actually been seeing that he's been steadily getting weaker and having more problems.
My biggest concern over the last three days or so has been that Jim seems to be, for want of a better word, "unconscious" most of the time. When it's not from lack of sleep, tiredness, and feeling ill, it's from the pain meds. When he "comes to", it's for very, very short periods of time. For example, he zonks out while changing TV channels. Two days ago when he left it on the "catholic channel" (well, he is in a Catholic hospital LOL) for over an hr, I quit trying to watch any TV when I visit, and just read my book now (7th Heaven by James Patterson). It took over 45 mins to try to prompt him to order lunch today (he hadn't eaten any breakfast), and I finally gave up trying. When he is conscious, he is quite crabby. I explained that I understand he thought I was "pestering" him about ordering lunch; but he had been holding the phone, off the hook, in his hand for 15 mins without ordering.
I debated this evening (after talking with the moms) on two courses of action now. One I implemented tonight (talking with Jim) and the other I'd rather not do for my own selfish reason (spend a night and day in the hospital to actually speak with ALL the doctors).
When I returned this evening, Jim was actually much better! The oncologist was there and Jim was awake and alert. After the doctor left, I put plan one into action. I explained to Jim how worried I was about his states of "unconsciousness" and his out-of-character crabbiness. I told him that he needs to quit taking the Dilaudid and take the vicoden; he's got to sit in the chair more, especially for his meals; and he's got to try to stay awake more. He has got to try to fight through this, no matter how hard it is.
After our talk, things continued to go well. Jim sat up in a chair for nearly an hour. He ate dinner and actually talked with me for a while. We watched some TV together (though he missed half of Idol, as they took him for an ultrasound to check for blood clots in his legs - and there aren't any!) Jim stayed awake for the 4 hrs I visited making me feel much better than I did earlier in the day. Before I left he told me that he would ask for a sleeping pill rather the pain med before he tries to get some sleep tonight.
Though the past 24 hours had me very concerned and upset (you would have freaked if I had really posted what I was thinking and feeling last night and this morning. :o Then after dousing my hands in the antiseptic, I rubbed my red, teary eyes yesterday and now one of my eyelids is slightly swollen and hurts), I feel much better after talking to Jim and then seeing him try so hard for me tonight.
I'm still a little leery about bringing him home as I don't think I can care for him properly if he's going to be so unconscious so much of the time; but several of the doctors reassured me this evening that they though he would recover better (both physically AND mentally) if they got him out of the hospital and back into his own home.
After a week of attempts to release Jim, maybe, just maybe, we'll get him out before Day #30 ends at 1pm.
Keep those legs crossed for us another day Betty! :-*
Thank you all for all of your continued support through this truly horrible month!
:-* mikie
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Hey Mikie,
I'm glad to see that tonite went better than usual. I have no doubt that once Jim is home ( hopefully tomorrow!!) you'll rise to the occasion and be the best damn nurse he could ask for!
Did you get the air mattress?
Paul
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Mikie, my legs are crossed as I'm typing this. I hope Jim can continue to fight and not give into the temptation of taking the D's. You guys have been and will continue to be in my thoughts....
Luv,
Betty
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Hi Mikie~
I'm sending hugs and kisses to you and Jim tonight.
~ Cindy
P.S. - ...and to the doggies, too! :-*
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Mikie,
Glad you guys had a good talk. Good luck tomorrow, you will be great, Jim is lucky to have you!
Snow
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I understand your concern about Jim coming home early. If he does, he would have home care or something, right? I think home would probably do him a world of good to, you know being back with familiar surroundings and all. That constant hospital white can make one crabby for a period of time...
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Did you get the air mattress?
Um, no. That was the subject of our little "tiff" the other night. Jim thinks the sofa bed will be fine. But I think he's over-estimating his recovery, so we'll wait and see. Personally, I'm not above saying "I told you so", when I need to go out in a couple of days and get a mattress. He he he. I guess I do have a little bit of an evil side. ;) But really, as much of my life will be "day-by-day" for a while as we continue through Jim's recovery and chemo treatments, I do have that room and bed nearly ready and can get a friend to sit with Jim, if I need to run out and purchase a mattress.
I understand your concern about Jim coming home early. If he does, he would have home care or something, right?
When I talked to the rep from the ASO last week, she did mention that home care was something they could cover. I think we'll deal with this issue on the day-by-day plan too. I remember when Hospice Care came in for Randy. They were very surprised at how long I had already cared for Randy while he was in such a bad state, so I guess I can be a "damn good nurse" when I have to. (though I was 14 yrs. younger back then LOL)
I'm up early this morning, and hoping this is finally "the day". My right eyelid is just a little more puffy than it was last night. It's not affecting my vision, though it is annoying as heck. It still hurts a little bit so; but I'm trying hard to NOT rub it or mess with it. And no, moms, I don't think it's pink eye or a stye. I think my eye is just "mad" from all the crying and rubbing and that stupid antiseptic I wiped into it. LOL I had a similar thing happen a few months ago; but it only lasted a few days, so I didn't go for any medical treatment. If it gets worse or doesn't get better by thurs, I'll have it checked out while I have someone with Jim when I go to handle his appt. with welfare.
P.S. - ...and to the doggies, too! :-*
I'm going to let the dogs out while I get Jim settled in and then let them in one at a time, so they don't overwhelm him. I know the dogz are going be soooo happy to see Jim. ;D From personal experience, I would think that some puppy-love will be the best coming-home medicine Jim can get!
I just talked with Jim and after a cat scan within the next half hour (one last check for clots and a current pix of those tumors for the oncologist appt on Fri), he says they are planning to release him. If we can get Jim out by 1pm, we can end this ordeal after 30 days. ;) I can't help it now; but I'm starting to get excited!! ;D Hopefully, I'll be posting some GREAT news for y'all later this afternoon.
mikie
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Mikie
Here's hoping Jim (and you) have a happy and otherwise uneventful homecoming and that they don't change his release time on you too many times ("just one more blood/lab/urine/ . . .test . . .") It can be quite an emotional roller coaster trying to get out of the hospital.
And don't let that eye go too long!
A
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Hope everything goes well for y'all today honey. Coming home from the hospital were some very happy days for me....sure he's got a long road ahead, but everything is better at home. You can't really rest in the hospital.
I'm keeping you both in my prayers, and looking forward to a good report from you later on.
hugs,
Alan
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I was up early this morning, and hoping this would finally be "the day".
My right eyelid is just a little more puffy than it was last night. It's not affecting my vision, though it is annoying as heck. It still hurts a little bit so; but I'm trying hard to NOT rub it or mess with it. And no, moms, I don't think it's pink eye or a sty. I think my eye is just "mad" from all the crying and rubbing and that stupid antiseptic I wiped into it. LOL I had a similar thing happen a few months ago; but it only lasted a few days, so I didn't go for any medical treatment. If it gets worse or doesn't get better within a day or two, I'll have it checked out. (more about my eye in a moment ;) )
I talked with Jim before heading to the hospital and learned that after a cat scan within the next half hour (one last check for clots and a current pix of those tumors for the oncologist appt on Fri), they were planning to release him. I arrived a few minutes after they had taken Jim for the cat scan. I was hoping that after that was done, we'd wait a couple hrs to hear the results and then get the heck outta there.
And don't let that eye go too long!
While I was waiting, who should be at the nursing station, but my ID doc again. LOL (I think I've overheard that someone else on the oncology floor a few doors down has HIV too) The first words out of his mouth were what did I do to my eye. ::) I explained how I think I got antiseptic in it, and got a "free" consult from my doc as he took a look at it. He agrees that it just looks irritated and to apply some cold compresses (which I've already been doing ;) I'm typing this now with a compress over that eye, so you all look very far away. ROFL). He also told me that if it got worse to go to StatCare and make sure to call and let him know. Check out the lovely picture I attached to see how it looked this afternoon. ;)
My doc then told me that he had seen an xray that was done of Jim's chest a day ago and there was a little bit of fluid around his lungs. He didn't think it looked like too much of a problem (the ct scan would tell them more) and that the odds of a release seemed a good 95% today.
When Jim was brought back to the room, we watched TV for a while before his lunch arrived. After lunch, Jim started getting groggy again. He was fumbling to hit the call button (for the nurse) and I asked him what he needed. He said he wanted to get the pain med so he could go to sleep for a while. I told him that 1) he should try to stay awake so he'd be ready when they released him and 2) that if he took the D-shot, they would NOT let him out today for sure.
Jim was a good boy for me and, when the nurse arrived, he asked about the vicoden instead. When he asked about his release, the nurse informed us that the pulmonary doc said "no go" for today while they monitor this fluid problem. Needless to say, upon hearing that, Jim opted for the shot. >:(
I'm still worried about Jim's attitude; but it's still my "job" to help him "try", especially since he's incapacitated right now. Unlike two of moms, who's husbands don't do anything to try to improve their health problems, it's not quite time for me to give up and let Jim "do what he wants".
So I spent the afternoon trying to arrange things so "if" Jim is released tomorrow in time, someone can be with him so I can try to make tomorrow's welfare appt. at 230. Luckily, if that doesn't work out, I've already got things arranged (since we have ended up with same case worker) to handle both of our cases at MY appt date on the 17th. That's just another bother through this crisis, as I have to keep re-scheduling all these appts. ::) I'm not even going to call the cancer doc's office until Jim is actually back at home, since it seems all my worrying and planning is for naught. :D Ah, the logic of not pre-planning and just taking it one day at a time. ;D (I'll learn that lesson eventually, Betty LOL)
When I got back home this afternoon, I found a note on our door. Thanks to google (what would I do without that and wikipedia??), I found out the letter was from the local Infectious Disease Health Team ("responsible for the follow up of certain Class A reportable diseases within a several county area" according to their website.) I guess that means Jim is about to add one more to the number of AIDS cases in the Ohio count. :( However, they don't need to "notify persons who have been identified as a contact to an infected individual" as, thank you; but I already know. LOL
Although I do understand that Jim is in the right place if he's still having problems (rather than at home where I would be freaking out trying to handle the problems), I have to say how crestfallen I am that I didn't get to bring him home yet. They've been "teasing" us with the release for a week now, so I'm not setting my alarm early for tomorrow, as I have the last few days. If they do decide to let Jim out early tomorrow, they can just wait around on me for a change. LOL
well, it's nearly 6pm, and the local mom has invited me over for dinner (pizza, I think). I talked to Jim about half an hour ago, and he was awake and doing ok. He had ordered dinner, and was watching TV. I think I'll going ahead and post this now and hope that'll prevent anything else "bad" from happening. ;) (leatherman has spoken, so let it be ROFL) Hopefully, I won't have any more to update you on until tomorrow - with whatever that news might be ;) ::)
leatherman 8)
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Wow, Mikie. Your eye looks painful.
Well, I'm still crossing my legs. :-*
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Wow, Mikie. Your eye looks painful.
well it hasn't puffed up any further, so that's a good thing. It's only annoying because it's like I'm looking at the world half asleep, but I'm wide awake. It aches a little, rather than hurts. As long as I don't touch it, it's fine.
like the old joke-
patient: doctor, it hurts when I do this
doctor: then don't do that
;D
no new changes to report this evening. ;) Because of dinner, I got to the hospital later than usual, and it wasn't long till it was time for meds (kaletra for one), and a sleeping pill rather than pain meds. Since it was lights out for Jim, I missed Dolly Parton on Idol and got home in time to see who was kicked off.
It was nice having dinner with the local mom and a couple of friends. They weren't nurses, or doctors, or patients, or visitors, or any of the other "hospital people" I've been seeing lately. For a couple of hrs, I felt like a "regular person" again. Very nice!
Well, I'm off to sleep in my big ol' king-sized waterbed alone again (and leatherman hates to sleep alone) where I'll tell the doggies once more than just maybe we'll have Daddy Jim back home tomorrow. ;)
hugs to you all!
mikie
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I'm sorry today wasn't the day, happy to hear you got to feel 'regular' for a few hours tho~
Keeping my fingers crossed for tomorrow buddy!
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Well, I'm still crossing my legs. :-*
That's a first. :P
Sorry, but I thought a little swipe might bring a giggle here. Mikie, keep trucking. Jeez...talk about a month from HELL. I think I lost count by day - or maybe not. Tomorrow will be 31 days, right? Wow.
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Sorry, but I thought a little swipe might bring a giggle here. . . .Tomorrow will be 31 days, right? Wow.
that's ok. i was giggling along too about Betty's crossed legs. :) But since Betty and I have made up from a tiff we had a while ago, I wasn't going to pick on her too much. ;) Heaven knows, I can't afford to lose any support or friends right now. (Thanks for doing it for me. ;D love ya Betty! :-*)
They say laughter is the best medicine; but poor Jim and I haven't had much to laugh about this last month. I've tried to leave Jim's TV on the comedy channel a couple of times, hoping that might help a bit; but he really hasn't been able to "focus" long enough. When things are this desperate, anything that might help is worth a try. ;)
Technically this is already day 31. :( At 1pm, we move into day 32 and start a second month in the hospital. Good grief. After being "teased" for a week about bringing Jim home, I sure hope he's not still there until day 62. :o
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I don't mind the teasing, really. Just remember what they say about paybacks.
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It's now day 32, so we're officially starting the 2nd month of Jim being in the hospital.
Jim's blood work was a little low again today, so he got another transfusion. While still being on O2, his pulse/ox count was in the low 90s this morning; but dropped to 84 by lunch. I sure don't see Jim getting out by tomorrow (fri) and the hospital usually doesn't release too many people on the weekends, so I'm not expecting to get excited about Jim getting released until sometime after the start of next week. He's going to have to have a major turn-around this weekend or even that is too optimistic of a view.
Although I had hoped to see the transfusion perk Jim up some, it didn't seem to have much effect at all - though hopefully his blood work will show some improvement by tomorrow. Instead Jim seemed to be worse off today. He was at best only semi-conscious part of the day, and he barely ate anything. I made him mad at me as I "nagged" at him to eat the cereal he ordered for dinner (it took an hour to get him to each 2 spoonfuls).
I had gone back to the hospital early (I was barely home today between the hospital visits and the long appt. at welfare where I got my yearly re-eval done and most of Jim's case handled until we can start the procedures with Social Security) because of a disturbing call I received from Jim. Before his dinner arrived, I had to keep prodding him awake to get out what was troubling him.
To be honest, I think he's about given up all hope. He says that he doesn't think he's going to survive this and that he doesn't know how much longer he can hold on. Four times (because he kept drifting off) I tried to explain to him that most of his blood work and bodily functions weren't that bad. I explained how I lay awake many nights thinking of what he was going through and what he chances were. I explained, through tears all four times, how I didn't want to lose him and that I wouldn't ask him to go through such "torture" unless I truly believed he could get through this.
How much did he understand and how much sunk in? I just don't know. Before I left, I at least got a half-hearted promise that he would try to hang on a little longer.
Tomorrow I'm putting plan 2a into effect. Rather than spend the night, I'm setting my alarm for very early in the morning. I have to get in contact with his GP and other doctors in the morning to get answers and their help. I need to know just how bad they think his condition is .If there is still a chance he can survive, then we need to do something to get Jim's mental state better or he's not going to be able to fight through this. If they really don't think he can survive, then I want to bring him home, and have better palliative care, so that his passing is easier and not in some cold hospital.
And as for me, well, the emotional trauma of seeing Jim in this state is killing me. I almost dread going to the hospital each time, putting on a happy-face, trying to motivate him, and saying all those supportive things; while inside my heart is being ripped apart seeing him in such an altered, dazed, and sick condition. I just don't know how either one of us is going to have the strength to continue if things don't turn around soon.
Somehow though I WILL hold on for as long as Jim needs me.
I just hope that Jim can hold on for as long as I need him.
:'( mikie
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Sorry things are so tough right now, Mikie. I will keep you and Jim in my prayers.
Snow
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Mikie, I'm so sorry things are not working out the way you had hoped. I wish you the one thing I seem to struggle with the most in my own life, to live it just one day at a time. Please take care of yourself as best you can through all of this.
JD
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Ahh MIkie, I wish there was something I could do to make this all better for you guys. You've been holding up pretty steady for 32 days now through all of this. Maybe today was just a bit of a breaking point. The frustration for you must be 100x the frustration we feel sitting helpless in front of our computers.
I'll be away for the weekend, but I'll continue to pray for you and Jim and pray that there is some good news to read come Sunday nite.
Paul
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Mikie, I must say this was not what I wanted to hear about your situation this morning. But, each day is new. Keeping you both in my thoughts.
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Hi Mikie
I have been busy but still have kept up with your thread here. Its sad that Jim is still in the hospital. I hope things work out for the best for both of you. I admire you for having the ability to do as much as you do for Jim. I'm sure he knows how lucky he is to have you on his side.
Joel
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What a horrible morning; but a better afternoon.
I got up (after hardly sleeping last night) and was at the hospital by 630am. I spoke with all of Jim's doctors and voiced my concerns. The docs explained that Jim's "altered state" was due to the pain meds and low O2. They all believed that his counts were stable enough and that going home would be the best thing for his continued recovery. So his discharge was finally scheduled for this afternoon.
Unfortunately, a few hours later, it seemed like everything was going to hell in a hand basket. Jim had gotten up (with my assistance) to use the bedside commodore. Because they had not given him any pain meds, he was moaning and crying out quite a bit. He assured me that he was as okay as he could be right now. However, he didn't listen to me and didn't wait to get help back to bed. His legs gave out, and he went crashing to the floor. Luckily this was another "student nurse day" at the hospital, and several came to help me get Jim back into the bed and cleaned up.
Of course, that incident sent me over the edge. While the nurses finished taking care of things, I ended up down the hall in the family waiting room, simply unable to quit crying. It seemed like my worst fears were coming true.
Ah, thank God for the nurses, though. By the time Jim's nurse finally found me, she had taken steps to get things handled. She contacted the docs, who still believed that Jim should go home today. Dr Nagasaki (not his real name but something like that LOL) emphatically stated that he believes that Jim will survive this and that maybe a home health care worker might be sent to help out for a few days - but NOT hospice care. (I told the nurse that I understood about all about hospice care, as it was 13 yrs, 11 months, and 2 weeks ago that I brought Randy home from the hospital and had hospice care for 9 days before he passed away)
So the nurse had already begun to made arrangements to get us some help. A hospital bed is being delivered this afternoon to our house (good! didn't I think that would happen and half-planned on it already? ;) ), along with O2. An ambulance will be bringing Jim home and helping to get him inside the house. And I also believe that they are arranging for some home health care worker to come over this weekend (not certain on all the details as my head is still spinning!) I made some calls and have a friend coming over within the hour to help me move a couch out of the living room to make space for the hospital bed. Meanwhile at the hospital, they are giving Jim one last IV that should take a couple of hrs, while all the other arrangements get put together.
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well it's 4:00pm. the sofa is in the garage, the hospital bed and O2 machine are in the house. The ambulance has come and gone.
And Jim is home! ;D
What an absolutely exhausting day. I'm both terribly scared and incredibly happy. Whee! the rollercoaster has been zooming along today. My back is starting to ache and I am dead-tired; but Jim is doing fairly well, and that's all that matters today. Tomorrow a nurse is supposed to stop by; and we have no appts. until Tues.
The dogz barked at Jim at first. As you can tell from the pictures of his first day in the hospital and his first day back home, he doesn't look much like they remember Jim. Nor does he smell too much like Jim with all that hospital odor around him. However, within about five minutes, he was letting them jump onto the bed with him, and tails were just a-wagging.
Hopefully, this is finally the turn-around point and things will actually begin to improve. Thank you for all your support for me while Jim was in the hospital! If things go well this weekend, I'll give us all a break from these updates and catch you back up at the first of next week.
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Mikie,
What a crazy day! That is great that the nurses got all you needed in line for you. I am so happy for you and Jim and the dogs. Just being home and surrounded by you and the dogs should do him a world of good. Good Luck and Congratulations!
Snow
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Mikie
Congraulations to you and to Jim -- that's quite a "glad to be home" smile there. No doubt there will be ups and downs over the next few days but I'm sure he feels GREAT to be out of the hospital.
Now make sure you take full advantage of the nurse and neighbors -- you've been through a lot too and need to take care of yourself.
Hugs
A
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Well....this is big news. Now that JIm is home, are you the head cook and bottle washer? Does he have an apetite yet? So....whats for dinner?
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Hi Mike,
I understand that your updates might be a little more sporadic now that you're in full time charge of Jim's care.... hang in there and know there are still people right round the world who are in your corner.
Please don't forget to take care of Mikie.
Hugs,
Ann
xxx
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Jim's first night back home didn't go too badly.
Luckily our living room is big enough to accommodate our new sleeping arrangements. I had Jim all tucked into his bed and was able to pull out the sofa bed for myself, still leaving room to walk around and put a bedside table next to Jim.
However, Jim had other ideas. He began to cry as he told me how he had only managed to get through by hoping for the day when we would sleep in the same bed together again. Since I have no clue what the future holds, and since Jim had been through hell the last 8 weeks, who was I to deny him what he so desperately needed? Thankfully, moving him from one bed to the other went smoothly, especially with Jim really motivated to make the effort.
You'd think after such a grueling day yesterday, he would have been all tuckered out; but I wasn't so lucky. LOL He talked and cried until midnight, explaining what a horror the past 33 days and 2 hrs had been. The hours of loneliness, the sterility of human contact with the nurses being gloved and masked, the confusion of not only different nurses and doctor every day; but the daze and mental confusion caused by the meds, much less the simple sheer terror with the possibility of death so nearby.
The rest of the night was spent with Jim still living on hospital time. That meant that every hour and a half to two hours, I was awakened as he needed more pain meds, more water, more or less linens, or the urinal. And each time, he wanted to talk more. I don't think I even got 4 hrs of sleep last night and it sure wasn't 4 hrs of sleep uninterrupted. Hopefully, as Jim re-adjusts to being home, things will settle down in the next couple of days. Thankfully, even with the welfare and SS pending, we've been able to get some assistance. A nurse was by today, and another will be in on Mon - along with a home health aide, which will take some of the pressure off of me.
Now that JIm is home, are you the head cook and bottle washer?
I'm the Head Everything Washer ROFL the clothes washer has been my best friend today. ROFL I've done so many trips up and down the stairs that I've pulled a groin muscle. Ouch! I can think of much nicer ways to do that than lugging couches around, hauling laundry up and down the stairs, not to mention helping Jim stand and move to a chair a few times. He's really quite the invalid at this point. Lordy, when does that aide get here?? ;D
Does he have an apetite yet? So....whats for dinner?
While I had some of my local mom's homemade chicken salad for lunch, Jim actually ate a small bowl of Frosted Flakes (without ANY "nagging" on my part!). Dinner was a small bowl of mashed taters for him, while I had ravioli (from a Akron italian grocery store - Jim has won over $300 from there working the last half year and getting the store credit as a prize for saleman of the month). Jim says he'll eat half a peanut butter sandwich in a bit - to start getting some protein into him. ;)
hang in there and know there are still people right round the world who are in your corner.
Every free moment, and there aren't many LOL, when I finally get those breaks to just sit, I really do think about how many people from so many places and reached out to us in such a time of need. When this crisis has passed us, if any of you ever need help, love or support, I'll be your guy. ;)
:-* mikie
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Please don't forget to take care of Mikie.
Hugs,
Ann
xxx
Remember this please.!!!!
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Mikie, if I ever get into a bad condition, please pm me your phone number. ;)
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Just when I thought I would be updating you less as Jim struggled to recover, I find my writing another post as Jim has worsened. It seems like every time I'm expecting the situation to turn around and start improving, we take a step or two backwards.
Last night was similar to his first night back ("living on hospital time" and sleeping together on the fold-out, of which I only have about 5 inches of space last night), except I got an extra hour of sleep throughout the night.
Today, as we passed the 48 hour mark, I must say that I wish they had NOT released Jim from the hospital. I have spent much of Sunday snapping, cajoling, pressuring, pleading, yelling, crying and bitching at my honey. He doesn't want to eat, or move, or do anything to try to stay alive. Matter of fact, he's ready to go back to the hospital. I don't really know what he expects there as they never made him eat or even got him out of the bed the last three days he was there. I guess those nurses were just happy to keep him Dilaudid-ed up as he was then one less patient to actually care for.
I screamed at him and cursed at him this evening and told him how much I was doing to try to keep him alive, while he was doing absolutely nothing to help himself. (Maybe those low O2 levels affected his brain/mind) I told him that I would NOT take him back to the hospital today. Instead, I told him to decide if he wanted to live or die, so I knew what to tell the visiting nurse tomorrow and which doctors to call. He also needs to decide, if he chooses to finally give up, whether he wants to die in the hospital or at home.
I just cannot believe how ugly I had to be to him to try to get the point across, that's not the kind of man I am. I nearly got in the car and drove away this evening after yelling and crying at him again; but I am a better man than that. I told him that I'll never regret what I said to him today whether he lives or dies, because I know what I said was nothing but the truth, backed by love.
As much as I wanted Jim back home, I now wish he had never come home this weekend (moral to this story: be careful what you wish for). Looking back and re-reading my previous posts, I must say that these last three days have actually been the worst for me so far in this whole crisis. I'm so mad, so sad, so frustrated, so sleep deprived and so tired and exhausted that I can hardly bear it.
As my mother told me the other day, there's only so much YOU can do to help someone if they won't help themselves. (I guess that's nothing more than the discussion we have here sometimes about whether to take meds or not. It's a personal decision for personal reasons.) I guess I'm trying to talk myself into accepting the fact that I'm not going to be able to prevent Jim's death, since he obviously has no will to live.
I plan to tell the nurse tomorrow all about this weekend, right in front of Jim, and will call the docs in his presence also (I have been "discreet" a few times and talked to people - like all of you reading through these last terrible 36+ days - outside of Jim's presence about his condition). But it won't be MY decision to let him die; it will have to be HIS.
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Mikie, I'm hoping you can get through this crisis with some degree of sanity. Take care of yourself.
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I was so glad this morning to recieve a call from the visiting nurse. She wanted to come over a little earlier today than originally planned. After telling her about the events that transpired over the weekend, and seeing Jim firsthand, she phoned the doctors and had an ambulance sent out to take Jim back to the hospital.
I'll be heading to the hospital in a few hours (after they take Jim in through ER) once they get him settled into a room. I'll update you all later tonight.
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Sorry to hear Jim is going back to the hospital. Good luck and try to keep your spirits up.
Snow
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Ok, this is for the best. I hope you get some rest, Mikie.
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Oh Mikie, so sorry to hear it wasn't quite time for Jim to come home yet. He just needs a bit more time in the hospital to get his strength back. Please take good care of yourself.
Peace,
JD
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This must be the world's longest rollercoaster that I've been riding the last 36+ days. I know I probably keep saying this; but today was the worst day yet.
After things went so smoothly with the help of the visiting nurse for transporting Jim back to the hospital, things were terrible once he got to the hospital. Since we hadn't been able to contact his GP at first this morning by the time the ambulance arrived, Jim wasn't pre-admitted to the hospital but went in through ER. The nurse had discussed with me that it would take a few hours admitting him that way, so I should take some time (and go eat some homemade chicken noodle soup my Ohio mom had made for us) before going to the hospital and that by then he would be back in a room rather than ER.
However, when I arrived around 4pm, I found Jim still in ER - tucked away in a darkened corner behind a curtain of one of the ER rooms. After seeing no medical personnel for 45 mins, I went looking for answers. The ER nurse was first very guarded about saying anything to me until I whipped out the medical power of attorney so fast I nearly got a paper cut. However, the most I really got out of her was that Jim was "very ill". Well, no duh! That wasn't new news after spending 33 days with him in the hospital. Nearly 8 hrs after entering ER, Jim was finally moved to floor two (the surgerical recovery floor). Because Jim had gone home, his records had already gone to the medical records dpt, so no one had any idea about what his condition was. A rather pissy nurse and I played 20 questions as I filled her in on the details, and offered to go get his records myself, since it was taking so long to get them transferred back up to the floor. Then I found out that although Jim's GP had been notified about all this at 10am, there were no orders for Jim, so they weren't even giving him water. For Christ's sake! The guy obviously is on the edge of death and can't even get a cup of cold water in a hospital!
I drove back home (detouring for stuffed bell peppers for dinner thanks to the local mom) to get some of the more recent papers about Jim that I hadn't had time to include in my ever-growing folder, hoping to help the new nurses figure out who Jim was. While at home, I gathered back up all the toiletry supplies we had brought home from the hospital, along with several cups and bendy straws. If they weren't going to provide some basic necessities and care for Jim, then I would handle it myself.
I got back just in time to find Jim being transferred (once again) this time to floor 10 - a medical floor that looks to be a step-up from oncology and a step-down from CCU. But this was a good transfer! On the new floor two nurses and three aides quickly were attending to Jim's immediate needs (and actually had a partial copy of some of his records). I told them all about the last month, the horrible time in ER, and thanked them profusely as I was feeling better about the situation finally seeing someone actually caring for Jim after nothing was done for nearly 10 hours.
The most troubling events of the day were a few things that Jim said to me. When I first arrived in ER (in that cold dark corner of a room) he didn't know who I was and asked if I was there to sell him something. Later as they were transferring out of ER, he told the aide I was his business manager. Thankfully out of ER, he knew who I was again. But as I left to go home for dinner, paperwork and his personal belonging, he asked me to take him home too; he didn't remember being at home this weekend. Then before I left him tonight, he was quite frustrated and mad at me. He repeatedly asked why I was forcing him to stay there and what gave me the right to make decisions about his care.
Though not knowing who I was, was the most devastating blow; I can forgive his anger at me, as he has very few lucid moments right now. The Jim that I know isn't home right now and a new, very disturbed person has taken his place.
The nurses talk to me like I should know that he's dying, while the doctors keep telling me he could pull through. If I knew which way things were going, I could make a better decision and the troubles of this weekend might not have happened. I'm very mad at some of the doctors and plan on talking with them. Just not tomorrow morning, as I have to get some rest after only getting about 15 hrs of sleep through the last four days. I hope and pray that Jim makes it through the night.
mikie
PS it's midnight and I'm about to finally crash, when my phone rang with a call from Jim. The time he spoke about how he's dying and asked if I would come back. I tried to explain that he was getting good care and I had to get some sleep. His reply? "You've betrayed me, and left me here to die. Goodbye. click". I really don't like this person that has replaced Jim, so I'm just going to ignore his hateful words. I know what I've done has been right, and so do a myriad of nurses, doctors, and all our friends. I hope and pray that Jim makes it through the night and that "Jim" finally comes back to me.
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You poor thing, what an emotional roller coaster you're on. I feel for poor Jim too. I can only hope that things will get better for the both of you... :-*
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You poor thing, what an emotional roller coaster you're on. I feel for poor Jim too. I can only hope that things will get better for the both of you... :-*
That about sums it up. Best of luck with all this Mikie.
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Mikie-I don't know what to say, I just hope things get better for both of you soon!
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I hope not to jinx things, and I say this with reservations; but things seem to be a little better with Jim today.
After that midnight call from the "person who isn't Jim", my phone was ringing again at 630 this morning. This time it really was Jim on the other end (he called me "honey"). He wanted to know if I could come in and turn off the beeping IV machine. (why the ER put that long-ass IV needle in his arm rather than use his port is a mystery I'll never know the answer to) I told him to call the nurse; but he said he had already done that several times. (Jim seems to be very hard to get a pulse/ox on, and IVs, for some reason, tend to beep alot when they're run through a needle in his veins) When I told him to try straightening out his arm, the beeping stopped. I got a very heart-felt thank you from Jim and told him that I'd be seeing him soon.
Two hours later (since I was awakened so early, I was about ready to leave the house.), Jim called back and asked when I was coming to see him. He was very happy to hear that I would be there by 830. I was VERY happy to see upon my arrival that he had eaten all but 2 spoonfuls from a bowl of frosted flakes, and was again drinking the ensure. I was even more pleased to see nurses and aides frequently stopping by to check in on him. (I have made sure to thank them all, hopefully, that'll help keep the better care coming)
Not long after breakfast, Jim was scheduled to get another transfusion. As the nurse was about to move the IV to his other arm (hopefully to get that beeping to stop), I asked why no one was using the port. Duh! I guess all his records aren't back upstairs yet. Before long, the IV needle was out, the outer part of the port was inserted, and fresh blood was flowing into him - with no beeping.
This hospital runs their food service like room service, so you can call whenever you want to order. They called while I was there to tell Jim more ensure was being sent up (I took the call). When the worker told me that Jim was listed as "non-parcipatory", I agreed with that. Now a food tray is sent to him automatically along with ensure for each meal. I stayed through his lunch and kept prodding him (he's still very "dozy") and got him to eat all the meat and a few noodles from the beef tips and noodles (it didn't really look like that; but that's what the ticket said it was LOL) and half a roll. He was back to being my nice Jim and took my prodding without bitching. Before leaving for the afternoon, I promised him that I would be back at dinner to make sure he actually ate again.
While at the hospital, I also started my own crusade. EVERY single doctor, nurse, aide, etc that steps into Jim's room has to hear my tale of this past week. I believe that because of the hospital's room service food system, where the cafeteria also picks up the trays, that no one was actually tracking how little he had been eating. I even remember an incident last week when the worker picked up Jim's dinner tray (untouched) and joked about Jim not being too hungry or not liking the food that night. What really happened is that the nurses on the oncology floor had been keeping Jim so doped up (sometimes I witnessed them giving the Dilaudid injection just as a meal arrived) that he was starving to death under their "care" (and I use that word VERY loosely). That meant by the time he had come home to me, he didn't have any strength to even attempt eating, much less trying to "recover". And for good measure I also add the part about ER leaving him alone all those hours to die in that dark corner of a room.
We're still not out of the woods by a long shot; but Jim seems to be getting back to where he was about mid-week of last week - before he began to starve to death. I plan to change my visiting hours, so I can be there each meal (well, maybe not in time for breakfast LOL) to make sure that Jim keeps eating.
One last thing before I got park my butt on the couch and do NOTHING for a few hours. I saw a sign today that the chemo must still be doing it's thing in Jim's body. After helping him brush his teeth, I was helping an aide get Jim washed up and I noticed quite a bit of hair on his pillow and the linens. Thinking the good thoughts, I'm going to pack a ball cap to take with me today, so maybe soon, Jim will be like like some of those other chemo patients I saw - walking the hallways with their IV stands and with caps on to cover their bald heads.
Though MY head might not be going bald (no jokes from the peanut gallery!), my head feels a little better this afternoon.
PS I really am going to sit on the couch now; cause I had a few "chores" to take care of first on such a beautiful Spring day in Ohio. First, I had to clear up the "dog yard". Now that all the snow is gone, all that un-frozen poop from this Winter needs to be cleaned up. Of course, I had to take some time and take the dogz out into the "big backyard" (behind the pool) to play, roll in the grass and chase balls for a while. Finally, I took some time for myself, took off my shirt, and just sat up on the deck by the still-covered pool, soaking up some rays. The dream I've been holding to through all of this is that "some time" this summer, Jim and I will both be sitting up by the pool enjoying the Summer together.
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I continued on my tirade this afternoon, as Jim was once again not doing well. When I returned, I found the nurse bringing in a reheated tray of food for Jim - who was still lying there pretty much unconscious. Jim and I fought again about eating vs. dying and I did get him to eat 1/2 a chicken breast.
One of the cancer doctors came in, and I let loose the tirade against him. Looking back now, I will have to say something nice to him and one of the nurses, as their answers have begun to sink in. Don't get me wrong, I said the right things, and I had the right to be upset; but after stopping by my Ohio mom's house and breaking down (more about that later), and listening to her story, I think I'm finding some hope to still get through all of this.
Traumatic as this has been with Jim, this isn't all that "special" as there are probably thousands of other families going through the same thing today. After Randy was buried, I never looked at a funeral, with just a passing glance as I used to. Now, I always feel sympathy as I know someone there by that grave is as hurt and destroyed as I had been at Randy's funeral. My heart goes out to those people, whom I don't even know, sooo much. But maybe that's my problem. The other day, in one of his deliriums, Jim said I was acting like a "big girl". What can I say, that is who I am - a very sentimental, emotional guy (omigod! that must be "mikie" talking and not "leatherman"). But I don't apologize for being that way. I lost the love of my life when I was only 30 and I nearly died twice. I learned the hard way to appreciate life and the ones you love. You have to enjoy your life and appreciate your friends while you are alive; because none of us really knows what happens after that. If you blow it in this life and go around sulking, you just might have wasted it all.
So talking with the Ohio mom, I remembered what we went through when her husband was so gravely ill and nearly died. She begged him to eat and live; she argued about his care with the doctors and nurses; she lived day to day never knowing if she was about to become a widow or not. Even after over a month in one hospital and then being sent to a rehab hospital to recover (or, being brutally realistic and honestly, being sent there to pass away) for two more months, her husband pulled through and has been alive (though a diminished man now) for 5 years - and he had NO will to live. We (as I was by her side throughout that time in her life) received four phone calls throughout his first month in the hospital, hooked up to sooo many machines, to come quickly as he was dying. No one has called me to say that about Jim. Matter of fact, the cancer doctor did speak about starting an appetite inducer medication along with IV nutrients. I may have been a "big girl" today, crying and ranting, but I know that if they continue to used the Dilaudid and expect Jim to eat, that he will die. I had my medical POA out again today and put a stop to that, and I truly believe that is the correct solution to this current setback (see I have some hope now, I'm calling it a "setback").
Of course, Jim's situation is still dire and there may not be a recovery; Either way, it obviously means that this is a hard fight if it's going to won. (the cancer doctor also explained how much harder Jim's condition is to fight having AIDS and aids-related non-hodgkins lymphoma; but having treated several similar cases, he really did not feel it was time to give up yet) Several times during his lucid and delirious moments, Jim has said that he wanted to live, so tomorrow it's time for me to keep fighting for Jim as another strategy (the med and nutrients) is tried. I may have been emotional today; but I was still doing right.
Finally! I bet you thought I forget to tell you more about my break down tonight. You know me, my stories always come back around - eventually. LOL I guess what's troubling me the most personally (besides perhaps losing Jim) is that we keep being on this brink and I'm deadly afraid some day some one is going to force me to make "that" decision again. With Randy, and with every one of our 7 spaniels that have passed away since, I was the one called on to make that final decision. I know I've made the right choice (too!) many times now, but who I am to play God? Each choice has always a very somber and heavy burden for me to bear. I tell you, being a "good guy doing the right thing" is a hard responsibility.
I believe now that after the last few days, tonight I stumbled under the load I'm carrying - but I'm still throwing punches! (I know I mixed my metaphors but I'm upset and emotionally wrung out. That's my excuse and I stand by it) Tomorrow I'll be back, with either Jim or JimD (that "other" person he is sometimes), making sure he's eating (as I did tonight as I feed him myself, and constantly prodded him to wake up and finish chewing and take "just 1 more bite") or getting nutrients. With some luck (backed by your prayers and good thoughts), and some patience on my part (patience - a hard lesson to learned and boy have we been taught it through this situation!) hopefully for Jim's sake, things will finally begin to turn-around.
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It's midnight and I just returned from the hospital after a late night call from Jim (the real Jim, not that guy that called me last night). After talking to his nurse, we thought it would be best if I came in after hours to help calm him some. Just 1/3 through a bag of IV nutrients the change in Jim was very good to see. He had a million questions, like a man coming out of a dream. He even asked if he had been someone else lately. I told him that I called that guy JumD. His reply? "That guy isn't very nice is he?" No. That guy is a really bastard. Jim did remember being at home, but was fuzzy on what happened through this last day. I explained how I had fought to get him the proper care, how the doctors and nurses had listened, and that I thought we were already seeing a turn-around evidenced by how lucid he was. I filled him in on his treatments and what to expect tomorrow. I thought it was best to NOT tell him about the ER experience. Hopefully, he won't ever remember that at all, though it will be forever etched in my mind. We made a plan of when I would come back tomorrow morning and wrote it down. He then told me to go home and sleep, so I could hurry up and come back. On the way out I had another nice chat with his nurse (I still believe that the more people that understand the whole situation, the better care Jim will receive).
Nitey nite as I have to hit the hay, since I am "scheduled" for a 930 visit with my honey and I have to be ready to fight the good fight again.
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Hi Mikie
I checked in to find out what was happening with you and see you did not post for Wednesday. How did things go ?
Joel
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I didn't post yesterday because I was just too confused about what to do to help Jim and was emotionally distraught and wrung-out.
For the first part of the day, Jim was doing okay; but as the day wore on, he became disorientated and confused again. He even refused to let the nurse re-attach the TPN (iv nutrients) after the blood transfusion was done. I went back in the evening, and Jim was semi-lucid and demanding to go home - regardless of what that meant. So we had a serious talk. I explained to him that in his lucid times, he stated he wanted to try treatment and try to stay alive. I explained that if he really did feel differently (and if it had been me in the hospital 37 of the last 39 days, I can't say that I wouldn't be ready to give up too) , then he had to tell that directly to the doctors.
So this morning I was back up early and in to talk with the doctors. ALL of the doctors believe that he can pull through - maybe of fact, after finding on the latest cat scan that the tumors have grown slightly larger, a second full round of chemo is being scheduled in a few days because his numbers are all close enough to normal. Also arrangements are being made to send Jim to a rehab facility, in a few days after chemo, for perhaps 2-3 weeks to recover before coming home.
I had a long talk this morning with Jim's GP about" Jim", "unconscious Jim", "depressed Jim", and "JimD". She says that sometimes cancer patients go through this kind of situation because of the meds, their illness, and just being in a hospital for so long. She had a psychiatrist come in and speak with Jim, and then with me. The plan now is to give Jim a mood elevator that should begin to take effect within a day and also anti-depressants to continue to help this situation.
It's no wonder the poor guy has been so confused through all this. Tonight they moved him again! and back to floor 8 (oncology - where they let him starve!!). However, he's back on the other end of the floor, where I thought the nurses were much nicer and better. Just before I left, as we could see a spectacular Spring sunset through the windows, he asked (and he has such a tough time talking now) whether that was the room and bed he was going to be staying in for the night. (poor guy! never the same nurses, or doctors, or rooms or even beds.) Tonight was student nurse night, so as I was leaving (early for a change) a "horde" was descending on him to give him meds, change the iv fluids, wash him up, and get him what he needed to get through the night. Hopefully, a new sleeping med will help out too. (I warned him about those 1am and 3am calls LOL) Although I would have liked to have seen some improvement in Jim tonight, at least he was just "confused Jim" and not one of those other bad personalities.
I can't tell you at all that Jim is doing much better; but I can tell you that his condition has been stable, and things are being done to correct the problems he is having.
After several days of bouncing up and down, I'm completely crazed and worn-out. I was all ready to accept the inevitable this morning; but none of the doctors believe the situation is that drastic (as I said the cancer doc believes chemo is a viable treatment in two more days).
After talking things over last night with my mom-in-law (a nurse) to determine what I needed to say to the doctors this morning and what I needed to find out from them, and after talking to my local mom today (who echoed what my own mom has said in the last few times), I've decided to take a different approach to Jim. Until his personality is back to normal, I can't let him keep cracking the emotional whip over me, and go rushing to the hospital every time he's upset.
I feel bad about having to take this tactic, but I have to save my own sanity (and health) and get some sleep (nearly every 3 hours for the last 5 days, I've either been doing something for Jim, or answering one of his crazed phone calls). I still feel deeply obligated though to keep a very close eye on the situation though - they did almost let Jim starve to death, so I can't completely trust them at the hospital.
Oh, and in two weeks, we'll find out how much of a toll this has taken on my health. On the way in tonight, to make sure Jim ate something at dinner time (about 10 small forks of pasta with meat sauce. that amount was better than nothing, and he does have iv nutrients still going), I stopped by the lab and had my own blood work done. Hopefully my counts won't be too far in the tank (I did "try" to take my meds, but I'll admit I wasn't very good at doing that for a lot of this past month). I hope the doc won't razz me too much either; but, with some luck, if Jim really is in rehab two weeks from now, I bet the doc will give me some grief. LOL
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Hang in there honey. I know how tough this is for you. I think you are doing a fantastic job of being a supportive and loving partner to your man.
As always, keeping you in my prayers....
Alan
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Thinking of you and Jim.
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Still here Mike, and praying for you both. Hang in there~
Paul
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Mike and Jim,
I just lit a candle for both of you.
I have just read the whole thread... and it has moved me thoroughly to know the terrible situation you are in.
If there is a God, let him have mercy on both of you and help Jim through.
But I want to send you tons of good energy and courage, because one tends to forget that you,Mikie, are suffering even so.
Know that I keep you both in my thoughts in tiny little Belgium.
Love
Hermie
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"After talking things over last night with my mom-in-law (a nurse) to determine what I needed to say to the doctors this morning and what I needed to find out from them, and after talking to my local mom today (who echoed what my own mom has said in the last few times), I've decided to take a different approach to Jim. Until his personality is back to normal, I can't let him keep cracking the emotional whip over me, and go rushing to the hospital every time he's upset." quote Mikie
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This makes a whole lot of sense for you, Mikie. I was beginning to worry that you were going to crack under the strain of all that up and down. I know that when Kurt was in the hospital, I limited visiting to two hours a day after work. Of course this is a much more serious situation, but you are wise to set some parameters, or schedule, so YOU wont be worn out.
Good luck and keep us posted.
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I was beginning to worry that you were going to crack under the strain of all that up and down.
too late ROFL ;D
I know that when Kurt was in the hospital, I limited visiting to two hours a day after work. Of course this is a much more serious situation, but you are wise to set some parameters, or schedule, so YOU wont be worn out.
when Randy was in the hospital, I was working back then. I stopped by on the way to and the way from work for an hour. I haven't had "the job" as an excuse this time.
but as you'll see from my next post, I've been listening and thinking to all the adivce I can get. I've been considering this situation, starting to make some changes, and about ready to get more info about to handle this kind of situation.
As I've said several times, I do so appreciate the love and support I'm receiving from so many people. I originally came to this site because I felt like the onliest sick guy left. What I found was that others had gone through many of the same experiences (and some were even worse than mine) and lived to tell about them too. I found real people who understood the toll that living with this disease can take on you physically, mentally and emotionally. I found out I wasn't alone...
...and I found comfort, concern, and support.
thank you all
:-* mikie
(who probably could use some anti-depressants himself ::) )
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After realizing I had just "lost" a week out of MY life, my brain is running full gear. I had to jot down a slew of thoughts to make some sense of what to tell you. So, sorry for all the (parentheses) LOL
update on Jim
Technically, Jim's condition is better than just stable (not in the medical sense, but as in how I perceive his condition), as several doctors reported more of Jim's internal organ functions returning to normal. I can't see much change from yesterday, except he was more asleep today, rather than unconscious or semi-conscious. Thankfully, I think he's finally getting some real rest. When he is awake, he's having a much harder time talking right now (dry mouth problem) and still having a little bit of confusion. (they moved him to yet another bed!! It's in the same room thank goodness; but they moved him to the other bed in the room which has an air mattress, to help prevent bed sores from forming) He had at first told the nurse he was going home today, and then told me that "I" was getting chemo today.( Not! After living through these last 40 days, YIKES I think I'll pass on ever taking chemo!) I helped the nurse wash and change him this morning, talked a little bit, and ordered his breakfast (which he didn't eat because of falling asleep) before leaving. He called me around 1 to just chat. He was able to tell me he was still waiting for the chemo treatment. He didn't beg me to come in though; instead he asked if I was going to be coming by at supper-time.
a harder experience?
I'm really going to have to go re-read some of Louis' posts and others here (sounds like I should go read through more of your posts too, Joel). Since I've only experienced a similar, yet different situation, and having listened to my Ohio mom's advice and really tried to remember her situation, I'm finding I need to look toward their stories and advice on how to proceed down this hard road.
Randy only had a 9-day hospital stay and just very weak until the last month of his life. Afterwards, I (at 30) was shocked and comforted to be able to share the kind of experiences I had then with my grandmother (80 at that time. I have always thought of this kind of thing as another bit of fallout from having aids. I am as sick as and can relate to people's conditions who are much older than I am. Maybe I should go read around in some senior's sites to really get a perspective on the life I've lived from 35-45. LOL but back to my grandmother...) who had around the same time lost her husband to Alzheimer's. For both of our men, they faded away (Randy in 18 months, my grandfather over 4 or 5 yrs), and the end was expected.
Right now I have more in common with my Ohio mom (67 - at least I'm finally relating to someone a little closer to my own age of 46 LOL) as her husband had a life-threatening crisis for 3 months. This experience is vastly different from my previous experience with Randy. Having lived through losing one partner, I really do know that life goes on. And that's part of the problem right now. Life is still going on - and I've got to get some of my life going again. I have to reconcile myself to NOT being by Jim's side constantly. In "losing" this last week, I put off earning some $$$ (more webcam work for a previous boss. It won't be all that much ($300 maybe) but it'll sure pay for some of that $3.45 a gal gas I'm burning up going to the hospital. Plus I do need to keep the roof over our heads for when Jim does get home), the house is getting all cluttered again, I didn't get any paperwork completed, and (selfish though it is) I didn't get outside to do any Spring yard work yet.
So today, I'm trying to make some changes. I started the day by taking my morning meds, visited Jim from 9-11, talked to him at 1, and called up the medical supply place to pick up the bed, and 02 condenser tomorrow. (I'm trying to think positively, that "when" Jim returns after rehab in several more weeks, we won't need those items) I won't return to the hospital until 5. Dinner is 7-730 tonight at my Ohio mom's house (where I'll take my nightly meds).
If you know me at all by now, you know I'll still be worrying about it all. I can't help it. As I've discussed with people before, even with all the crises and deaths that have been in my life, I'm not a pessimist. Most of my thoughts are about how things will go WHEN they work out, even if that takes longer than I'd like - a truly optimistic view. However, as a realistic person , I know that sometimes things don't work out nicely (my heart has already been broken learning the lesson with Randy).
In many ways Jim's crisis has been a much harder situation to get through than Randy's. I just keep telling myself that the chances are high of the outcome being better this time. Unfortunately, death trumps everything, and losing Randy truly was the worst thing to happen in my life. The doctors tell me that Jim shouldn't die, and I'll just have to trust their word.
mikie
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Hi
I just wanted to check in today and see how things are going. You seem a bit calmer in your last post, so i hope you are doing better. I know that you need reassurance from the doctors that things will get better. I am glad that you have your Moms to help you. That must be a great relief for you too.
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My phone ringing (w/ Jim's ringtone, a Pet Shop Boy tune) at 7:15 woke me up this morning. I was surprised that Jim would be calling. To be honest, when I left the hospital last night, things hadn't looked very good. I know the doctors kept telling me that he was getting better; but as he laid there sleeping when I left last night, so ill that he had barely been able to talk to me, he looked worse that death warmed-over. To my eye, he looked like and reminded me of nothing more than Randy during his final few days.
Expecting him to still be in a "stable" condition, and to hear his mumbled voice, imagine my astonishment when I heard how clearly he was speaking. The more he spoke, the faster I woke up, as I realized something wonderful had happened. When he asked when I would be in to see him (I had already jumped out of the bed by then), and I said probably not until 930, he told me to "get my ass outta bed" and come see him soon because he felt much better.
Before an hour had gone by, I was entering his room. Tears threathened to flow, as I saw him not only sitting up in bed; but happily chatting with his nurses. The change in Jim was remarkable! It's no exaggeration to say that he is 1000% better than he had been just 12 hrs. previously.
(Don't get me wrong. I totally understand that we're not out of the woods by a long stretch yet; but I needed something to pin my hopes on. I needed to see some visible improvement in his condition.)
I really got to "visit" with Jim throughout the morning, watching him eat not only some breakfast; but some lunch too (I had a third of his chicken pot pie, he had the other third; we had both had enough and left the last third LOL). During that time we talked about the things that had actually been happening vs the things Jim had perceived through most of the last week. Much of Jim's "reality" was mixed up between overheard conservations going on in the hospital, and with whatever was playing on the TVs loud enough for him to hear, along with the true reality of what had been happening to him (the multiple rooms changes, so many different nurses, and doctors coming in at all hours) His confusion (and the underlying depression) are getting better as times goes by.
Late this afternoon, I took "our" Ohio mom along to the hospital with me (she "bribed" me by offering reuben sandwiches at her house afterwards LOL). Jim was still up and doing well, so we stayed nearly an hour chatting and watching the ten-billionth re-run of The Lord of the Rings (which one doesn't matter. I can quote them all. LOL) Dinner for Jim was all the meat in the beef tips and noodles (and that's what it really looked like this time LOL) and some popsickles.
After the reubens and only one hand of euchre (and for a while I felt the old mikie again - mainly because I won! LOL), I made one last run by the hospital about 830. Earlier Jim had been hinting about asking me to stay the night, but he was just too sleepy already (and crabby from being tired), and I wanted to get home so I could spend just one night NOT worrying so damn much.
My whole day has been so much brighter (even if it did rain off and on all day). Who would think that just having your partner not all talk "crazy talk", much less just be able to talk at all, would be such a great thing. Hmm, next time you wish your partner would just shut up, you better consider the ramifications before making that wish. ROFL
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Mikie, so glad to hear the good news! Here's hoping there's some momentum building in Jim's recovery. Please take care good care of yourself too!
JD
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this post isn't an update about Jim. it's just some random musing I had today thinking about the past, the present, and the people we've met in the hospital.
Helping me not worry so much about Jim' mental condition is that tonight we've played the "I know what you thinking" game. See I've been lucky to have a very good connection to the two men in my life. I guess the best word for it is "simpatico". Many times we can finish one another's sentences, or bring up the same subject the other one was about to discuss. If you tell one of us something, then expect the other one to know that same thing next time you met. Randy took it in stride; while Jim is constantly amazed by it. I just think that's the way love is.
Tonight, once again walking the hallways of the hospital, I began to think about all the people who stop to chat with me or say hi. Well, after spending 39 of the last 41 days there, Jim and I have both met or passed all the hospital staff on numerous occasions. (Jim meets them as he is transfer ed around from room to room, or going to the labs for any one of those scans that they have done on him.) Some of the staff even knew me before all this, as I get my bloodwork done in their lab on the average of every other month. (If my counts would only hold stable, I wouldn't have to have those vampires at me so damned often. LOL)
In thinking about all those people, I realized that Jim and I had both been flirted with! When my Ohio mom and I stopped in tonight, Jim was chatting with an aide (male) I hadn't seen before. My "mom" knew him though - he had been an aide over in another wing two years ago when she had both her knees replaced. Talk about a small world (well, this is a small city after all). Come to find out, this aide also knows several people that we know too. And it didn't come as ANY surprise to find out that his name is Mike. That's about the 15th one we know, counting myself. ROFL
After the aide left, I teased Jim about flirting with the guy. Jim read my mind though, and said what I really was thinking - that the aide had been flirting WITH Jim! Now that the subject was started I mentioned to Jim that I thought a transporter (one the crew that moves the people around to their scans and rooms) had been flirting WITH me the other day. Jim blurted out, "oh, you mean Glenn? from down in ER?" What?!?!? I thought Jim was all unconscious and stuff down in the ER. LOL (Hmm. So Glenn is the name of that hottie cruising "leatherman" while "mikie" waited for Jim to finally get out of ER and into a room.)
But enough about the boys, and back to our celebrity status in the hospital (having my picture on the front page of the paper last month sure didn't hurt any LOL). For whatever problems we've had with Jim's care, this hospital is staffed by a huge amount of very kind people. Nurses, aides, and transporters all frequently visit Jim (even coming from other floors) to see how things are going. I'm sure to be waylaid at least twice coming and going thru the halls (and even in the parking deck) by others asking about Jim, and how I am doing too. They ALL seem to know about our dogz, Pooltag and my muffins. ROFL
The other thing they all know is that we're gay. I'm old enough to remember when people would not have been so "nice" to us because of that. I remember a few incidents where I was seen as an "outsider" in Randy's case (back in the early 90s) because we were not "family".
See, I've always fought the "stigma" issue, not in marches like my aunt has done, but by being know as that nice "gay" guy. At my old house, I know all the neighbors refered to me as the "nice gay guy with all the floors at that corner house". (if they only knew how "bad" leatherman was though, they'd probably call me something different. LOL) Now, I've been kinda tickled to overhear some of the staff refer to us as that nice "gay" couple. Not once has us not officially being "family" been a problem. (We've even been caught smooching a few times by nurses and doctors.) Matter-of-fact, many of the staff have gone out of their way to get me a place to sleep or allowed me into the various scan rooms. It's nice to see that even in small town conservative USA, some of the stigma has diminished over the years. (even if the ID doc and cancer docs do glance furtively around before whispering "hiv" during their daily visits. LOL)
sleeping a little easier tonite,
mikie
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well, I guess I let my spirits get too high, and now I guess I'm going back to my original game plan.
Last night after leaving the hospital, I was surprised to receive two phone calls from Jim. It seems he had been talking to the aide about Pooltag and had some new ideas. I was very buoyed to hear that - that means he actually contemplating living until that pool party we hold on his bday at the end of July.
However, during the middle of the night, I received four phone calls from "crazy Jim". He was fairly mellow and subdued but wondered what was happening next, where were he clothes so he could go home, when was I coming to visit, and then tried to tell me the doctor said this morning that he would probably be released to go home on Monday.
Needless to say, I didn't get the good night's sleep worrying less about Jim last night after all.
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Mikie, I just realized the avatar you have is perfect for the situation you are in. Everyday seems to be a rollercoaster ride and you are doing well with the ups and downs. I am glad you and Jim have been getting treated well at the hospital. It really sucks that in this day and age that you are gay comes into the equation, not that I know you personally, but from your posts you sound kind-hearted and caring AND you make them muffins, so how could they not love you both. Thanks again for sharing.
Snow
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I was only at the hospital a short time this morning because things weren't too bad (even after those late night calls). Jim's nurse and I discussed what was happening and she gave me a new term to google up: "hospital psychosis" (cognitive problems developing from a hospital stay). Now more of what's happening makes sense - and causes me less worry too. (it also points out where I think doctors fail us - by never "treating" the emotional issues that go along with a medical issue. think about all the posts here about testing counseling that isn't done. That's the same problem) Understanding that term ("hospital psychosis") and remembering what my mom-in-law told me the other day about hospitals having to do more paperwork on a patient who has been in for over 30 days, I now understand why they sent Jim home last weekend. They were hoping to help, not only themselves to less federal regs and paperwork, but to also help Jim's mental state.
Thankfully this psychosis is a temporary condition said to clear up within two weeks of returning home to familiar sights and routines - and without all the lights, and bells and whistles going on in a hospital.
I'm busy baking some muffins today for the nurses (I finally got to use the new muffin pans I got for my bday, ages and ages ago it seems), and tonight I'm putting Jim's phone on the charger before I leave. (the outlet is on the far wall, so I know he won't be able to get to it in the middle of the night. leatherman snickers evilly LOL Thanks to all who suggested this solution!! I thank you and my sanity thanks you!) I NEED some sleep and I have a couple of days of work that I can do this week, and we sure do need a cash infusion.
It really sucks that in this day and age that you are gay comes into the equation, not that I know you personally, but from your posts you sound kind-hearted and caring AND you make them muffins, so how could they not love you both.
As I told my local mom a few weeks ago, as gay guy I don't want to be treated differently; but I do still want to be considered "special". Although I may just be another human being on this planet, I'm also in a minority. I live in a world where everything is geared to a hetero viewpoint (even my new favorite channel LOGO has ads with the "breeders" kissing away). But just like that 80-ish year old couple in the hospital a few weeks ago, I love and care about my man and should be "allowed" to express that. It's no different for that older lady kissing her husband and caring for his needs, as it is with Jim and I - it's just "special" cause it's two guys.
It's been pleasantly surprising (now in 2008) how accepting everyone has been to us in this Catholic Hospital. But how can they do otherwises after seeing what a nice "gay" couple we are and seeing how much I dote and care for Jim. I know I've changed other homophomic minds by first being known as a "nice" guy before they find out about my orientation. I like to think my love and support to Jim now is also changing more minds.
and feeding them muffins sure doesn't hurt. ROFL
mikie
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--I screamed at him and cursed at him this evening and told him how much I was doing to try to keep him alive, while he was doing absolutely nothing to help himself. (Maybe those low O2 levels affected his brain/mind) I told him that I would NOT take him back to the hospital today. Instead, I told him to decide if he wanted to live or die, so I knew what to tell the visiting nurse tomorrow and which doctors to call. He also needs to decide, if he chooses to finally give up, whether he wants to die in the hospital or at home.--
--I just cannot believe how ugly I had to be to him--
Mikie,
I just found this thread and started reading and got pulled into a past life that I thought I nailed the door good and tight....you are doing exactly what needs to be done for Jim and for yourself. (Though recognizing it is the rub) When Chuck was just lying in bed and refused to eat I 'crossed over' into becoming someone I was not, but needed to be to get things done. When I finally broke down into 'ugly' and forced him to the hospital, I was in such a state that the doctors and nurses were more concerned about me than Chuck.
I'm new here, but please acknowledge Betty, Bear60, Ann who remind you to take of yourself. You are doing what must be done.
Keep on.
ronnie
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Ack! The phone-trick almost worked. Someone slipped up in the middle of the night though and my phone was ringing at 4, then 530, then 6. I've since talked to the nurses and now there's a note in Jim's chart to tell him that his phone "isn't charged up and is still charging" if he asks for it again in the middle of the night.
I re-scheduled his SS appt. (again), put in a couple hrs of work myself (where Jim used to work too, so most of my time was spent catching everyone up instead of working on their webcams LOL), scheduled pickup of the hospital bed and O2 condenser for in the morning, and made short visits to the hospital at breakfast and lunch. I'll make one more short visit today but that'll be later tonight (so I can put his phone on the charger again), and with a little luck (and help from the nurses) get to sleep in a bit since I'll need to be home in the am for that pickup.
Jim was still doing alright. Although he's been shedding quite a bit (chemo will do that), you won't know it as long as you didn't check his hairbrush or pillow case.
As for myself, I could use some more sleep (maybe, just maybe, tonight!); but have been doing fairly well. I've been eating right for a while and my stress-induced intestinal problems seem to have cleared up. I've also been a VERY good boy, and have taken ALL of my meds since the day of my last blood work. If I can keep that up, then maybe the doc won't fuss at me too much next thurs day when I see him, not at the hospital for a change; but in his office.
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I'm not so certain if I'm going to get that good night's rest or not. When I stopped back by the hospital tonight, things were not going so well. Jim was totally misunderstanding about physical therapy and rehab and is under a firm belief that if I only bring the walker back to the hospital he'll be able to get out of the hospital. I tried to make things better by bringing back some of his own clothes, the slew of get-well cards he has received, along with a list of things he can do to get out sooner (eat as much as possible, do the bed exercises, sit up in bed, sit in the chair, etc); but I don't think it helped too much. Jim was in quite a mood.
First he couldn't get past some of his confusion and was very frustrated. Then started on the tack that "I" couldn't even do one thing right for him (I didn't bring the walker in - personally, I was afraid that in his "condition" he might try to use it in the middle of the night!). Unfortunately, I let my own frustrations (and lack of sleep) get the best of me, and told him in no uncertain terms to NEVER fault me after all that I had done for him over the last two months. (I'll be SOOOO happy to get the real Jim back!)
Secondly the hospital has gotten quite full in the last few days, and a patient was moved into the other bed in Jim's room tonight (a 92 yr old man). Jim's paranoia meter was shooting off the scale tonight! He was back to being close-eyed, teeth-clenched, and begging to be taken home. I did hide his phone in the bedside stand and talked with his nurse; but relented and told her she could call if Jim got "out of hand" during the night. (God, please let the sleeping pill work really good tonight!)
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Hi Mikie
I hope you got a decent nights sleep and are going to try to take it easy today!
Joel
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I just found this thread and started reading and got pulled into a past life that I thought I nailed the door good and tight
Gosh, I am so sorry this brought back disturbing memories. I was hoping to lock them up myself after this is all over; but just as the grief of losing my Randy has only faded and is always there lurking, I guess I'll be saddled with these nightmare-inducing memories too.
But that's too far in the future to worry about yet.
See? I'm listening. One day at a time. ;)
you are doing exactly what needs to be done for Jim and for yourself. (Though recognizing it is the rub) When Chuck was just lying in bed and refused to eat I 'crossed over' into becoming someone I was not, but needed to be to get things done. When I finally broke down into 'ugly' and forced him to the hospital, I was in such a state that the doctors and nurses were more concerned about me than Chuck.
yes, I've been wondering if I won't need therapy or to be medicated when all is said and done. I've got no time - or energy left - for that sort of thing right now. LOL
As I said, I don't regret a thing I've done or a word I said to Jim in the bad times during this crisis; but that still doesn't make me feel much better for having had to become such a "mean" person to get done what needed to be done. I can't say I was terribly happy even to see all the looks the docs and nurses were throwing me the day I was on my "tirade" (the "quick, call security. this guy is crazy" look); but Jim and I have been there enough that I hope they know the "real" me. At least my rant got things turned-around and going in the right direction for Jim, so I can't feel too guilty about that either.
Once again, I found myself thinking of "others" who have been through this kind of situation. How did they manage to survive it? Did they survive it at all? I've managed to muddle my way through a lot of crap that's happened to me in my life, I'm sure I'll find my way through this too - in time.I just hope that Jim is able to come to grips with what has happened and isn't too "changed" when it's over. Of course, this kind of experience does change a person no matter what, but I'm hoping Jim's change won't be towards the bad. I know my own close calls with death changed my outlook. For a few years, I didn't even consider plans over three months in the future (If I felt well that day, I figured 3 months would be the time to get sick, get pneumonia, and that would be the end). As time went by though, I have gotten to a point where thinking about next Summer or next Christmas is definitely an option in my planning. I also learned to appreciate every day as much as I can. As I probably said last month, I'm very happy to have turned 46. That's something I could have never imagined lying in a hospital bed myself 9 years and 1 month ago.
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Yeah! I got a whole un-interrupted night of sleep. And thank goodness because today was a busy one for me.
Jim's cell phone was still off this morning and went to voicemail, and no one was answering the hospital bedside phone. After the guys came and picked up the medical equipment from the house, and I got to the hospital, I found out why. They had moved Jim again!
Because Jim had gotten that new "roommate" last night, his paranoia had kicked into high gear, and the nurses told me he had regressed to that nearly catatonic state again. Around 2am, they transferred him to the 5th floor (pediatrics/adults) and into a private room. Since the whole floor had started off as peds, there was carpet in the hallways, the most gorgeous wallpaper border (some Mediterranean seaside vistas), lots of primary colors (rather than hospital puke green) and the rooms seemed larger.
Jim was only slightly better in that room though. He was back to being very confused and frankly "demented". During the night, he had even attempted to get out of the bed (crashing to the floor) and now had a bed alarm in case he tried it again. In talking with another "new" set of nurses, and looking at his charts, I found that they had no information about Jim's mental condition. They thought he had always had those problems - and of course by their records they thought he was only a 9 day patient (what is this now? day 43 of 45, I think. I losing track it's been so damned long). When I explained that from Sept to Feb, Jim had been the top salesman at his dealership, they were quite surprised at the condition he was in now. (I told them to go chat with the 8th floor oncology nurses about "hospital psychosis")
Then I went to work for a few hours, where I probably spent most of my time updating Jim's old colleagues on his condition (he worked with this dealership for about 6 yrs, and I did their computer tech work for 4 yrs).
Stopping back by the hospital was really disheartening. Though Jim's physical condition wasn't worse (matter of fact his blood work is really coming around now; though after lying in a bed for 9 days straight this time around, he is quite weak as you can imagine), his mental problems were still very present. I took a look at the notes he had been making about changes to our patio and ideas for Pooltag floats. Although it's good that he's thinking into the future and making plans to still be alive when he turns 52 in July, I couldn't make head or tails out of what he had written or drawn. (only one phrase "personal debt" was legible, and I think that came from a frequent commercial running on the TV lately)
I had to explain that his back wasn't broken; his muscles just hadn't been used and weren't working right. I also explained that there wasn't fog in the room, the spiderwebs in his hand were actually his hairs which was coming out because of the chemo, and that the undulating unit under his air mattress was not two guys (Chuck and Larry I think he said) that were wiggling their fingers under his back. He said a lot of other really off-the-wall stuff, while he eyes were constantly darting around, to which I could only nod agreement and force a smile.
Although seeing Jim nearly dead of starvation last Monday was the worst, having a "crazy" boyfriend is no picnic in the park either. I'm endlessly answering his same repetitive questions about why is he there?, why can't he get out of bed?, what's the plan?, and why can't he go home?
HIV, non-hodgkins lymphoma, starvation, chemo, now (hopefully temporary) dementia. How much more can a person endure? I sure hope the docs are right and all this suffering that Jim is going through is worth it.
I really miss my Jim.
mikie :'(
(who is turning off his own phone tonight)
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Hey I am so glad you are getting some good sleep. I know how hard it is to take take care of oneself under these circumstances. Hang in there.
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Hi Mikie,
Hope you are managing to take care of YOU during this horrible ordeal. And honey, don't feel any remorse about drudging up bad or negative feelings that many of us may have experienced, even if it was years ago...sometimes we need to be reminded of how good we have it, if nothing else, to make us more thankful for it.
I know exactly what you mean about finding it difficult to plan very far into the future....to this day, I have problems doing this. I think it comes from struggling with "short term" goals for so many years.....such as "just let me live until the next holiday"....or "now if I can just stay well through winter".
It's hard for me to imagine YEARS down the road from now, I guess because I have felt as if I (and others) were living on 'borrowed time' for quite awhile now. I try to be more accepting of things, and look on the hopeful side, but always in the back of my mind, I'm running through the "worst case scenario".
Hang in there honey, and lean on your support system (the Moms and friends) when you need to.
hugs,
Alan
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Thinking of you and Jim still.
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Tonight as I sit here rethinking the day, I realize I'm not really feeling too much. The routine of the end ups-and-downs is actually becoming routine. Maybe getting out with the "real" people in the world some - and not just talking about what's happening with Jim - has helped bring me to a mild sense of peace about the day.
Before going to bed last night, I had talked with my late partner's mom (who was a nurse for many years) once again. She was surprised at the things I was telling her about Jim's dementia. Without knowing more about his case, she suggested I talk to the doctors and perhaps see if the CAT scans included his brain, which might be being affected by the cancer.
And it was a good thing I had turned off my phone last night as Jim called five times! My voicemail was filled with "crazy" messages. When I called him back after I got up this morning, he was wanting me to pick him up in the "normal place". I asked him why?, and he asked if I had been watching the news? The world was ending and he wanted to go home before the earthquakes and floods hit the area. Oh my!
Following my mom-in-law's advice, I had left word for Jim's doctor to call me. When she (the doc) did and I told her I was worried about Jim's condition, she knew (having seen him before I got there) immediately that I meant him mental condition. Right now she (and doctor1 and doctor2) thinks that perhaps it's a combination of the meds Jim is on; so they will be switching one and slowly weaning him off another (as it is a steroid). The doc was also calling a neurologist in on the case.
Getting to the hospital, I stopped by the 8th floor first thing to see if my muffin containers had been emptied (I have to watch those things, or they'll just "walk" off all by themselves. LOL)
Jim was still pretty messed up when back down to the 5th floor to see him (who wouldn't be having been moved at 2am to another room!); but was trying hard to focus (after the doc has visited) while we chatted for about 45 minutes. He really seemed to understand that he was not "himself"; but just couldn't shake the paranoia or disbelief in his hallucinations.
After leaving Jim to go put in a few more hours of work, I had a stupid little tiff with the nurses on this new floor. and they told me that Jim was going to be transferred back to the 8th floor. I simply asked the 5th floor nurses to give me a call if Jim was transferred before I got back, and you would have thought I was asking for the moon. I thought I was nicely explaining how we had been there for 45 days and several room changes had occurred in the middle of the night. I wasn't sure whether Jim would be coherent or not to let me know about his new room and didn't want to wander the halls calling his name. As the crowd grew (and I could see that "call security look" in their eyes), I told them just to not worry. I'd simply go back to the 8th floor and ask them to call me. In my best flaming mode, I told them that I hadn't meant to cause such a ruckus for a simple 30 sec phone call and that my next batch of muffins would be for the 8th floor crew again, and "those" people wouldn't be getting any of MY muffins. (throwing in some cuss words in my rant in the Catholic hospital gave me some satisfaction seeing their shocked faces. I told you that "leatherman" was a baaaad guy. ROFL)
Coming back after work and grabbing a bite for lunch, I found that Jim was no longer on 5, so without speaking to anyone there, I headed on up to 8. As I walked down the hall, one of the nurses (holding a phone) came towards me laughing. I answered my ringing phone and she told me that they had just gotten Jim settled into his new room. Talk about good timing. LOL
Jim seemed much, much happier back on the 8th floor and was better during the afternoon. We shared a piece of carrot cake, while we chatted and waited for the hospital to get their cable TV fixed and back on. I left him to take a nap.
But things didn't work out for Jim's nap. First, the neurologist stopped in, and an MRI is going to be done to check Jim's brain. Then the physical therapists (finally!) showed up and put Jim through the paces of bed exercises. Then the cable came back on and he ordered dinner. Then he tried to contact my Ohio mom to get her to come up for a visit. How do I know all that happened? In the three hours I had tried to get home and get my own dinner, etc, he called about every 20 mins. to update on all the "progress". LOL Then he called again to ask me to bring the charger for the phone. (and think. just the other day I was complaining that he couldn't talk at all, and how I missed his calls. ROFL)
After dinner, our picked up my local mom and we went to visit while Jim was still in a "good" condition. The visit went well; but the paranoia came back is it grew closer to our leaving Jim for the night. To top it all off, (I thought of it as a "miracle", while Jim thought of it as "the end of everything"), Jim's cell phone fritzed out. Taking it apart and dabbing some moisture off the battery, I got it working again (damn!) and I didn't leave the night nurses to a raving lunatic. LOL
Speaking of the night nurses, and just the nurses in general on the 8th floor. I found out that they requested to have Jim moved back, and cleaned up a "spare" room where they had been storing chairs and IV stands, just to have him back up there and in a private room (right across with his nurse's workstation). Nearly all the nurses poke their heads into the room whenever they get a free moment just to check on things. Several of them, went out of their way today to talk to me. And of course give me the lecture so many of you do. LOL ** Sad to say, but I guess seeing us going through so much for so long, it's hard for them not to take a little bit of extra pity on our plight. Maybe this extra TLC will help Jim pull through this and start having more UP days then UP-and-DOWN days.
The muffins MUST have done the trick! ROFL
mikie
**"Eat right, get some sleep, don't wear yourself out, yadda, yadda, yadda." I really do love you all and thank you all for the constant reminders because I do HAVE to keep doing those things you fuss about if Jim AND I are going to get through this - and I do need those reminders.
PS I just turned my phone off for tonight.
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Thinking of you and Jim still.
:-* and thanks still ;)
sometimes we need to be reminded of how good we have it, if nothing else, to make us more thankful for it.
like I said, I used to boo-hoo about my two little bouts of nearly dying with pneuomina. Piffle! I didn't know how good I had it till this happened. ;)
however, I do reserve the right to "gripe" about the next time my meds make me puke, or about this dang herpes infection that is flaring up in my hand again right now. ;D
I guess because I have felt as if I (and others) were living on 'borrowed time' for quite awhile now.
I so understand.
However, I have thought of nearly the last twelve years (after the first bout of PCP) as EXTRA time. For the first few years I admit it was more of an "omigod I'm actually living this exta day (and feel like crap)" sort of feeling; but as the years rolled along, it become more of an "since I have this 'extra day' I better try to enjoy it" sort of feeling. Do you know how thankful I am that the meds have improved?!? ;D I may bitch about the puking now; but the amount of puking and sickness I had from all that AZT was truly unbearable - and that's why I just quit taking it!
mikie
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The muffins MUST have done the trick! ROFL
Please can I have the recipe of these famous muffins. I really really need them.
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After reading everything you two have been through I just think you two have a wonderful relationship and I hope Jim gets better soon. Hopefully, he won't call as much as every 20 minutes though. I find your posts very inspirational.
AA
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"Before going to bed last night, I had talked with my late partner's mom (who was a nurse for many years) once again. She was surprised at the things I was telling her about Jim's dementia. Without knowing more about his case, she suggested I talk to the doctors and perhaps see if the CAT scans included his brain, which might be being affected by the cancer."......quote
............................
Mikie....this is very sane advise and I do hope its not something brain related. You are so lucky to have these wise MOMS in your life.
Joel
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WooHoo! No calls at all last night.
When I called Jim this morning, his doctor was just coming into the room. Since the cell phone is working again (I am his hero for that! LOL), we used the speakerphone to conference. An MRI is on the schedule for today (the doc says that will confirm no tumors in his head and check for any small seizures (from the malnutrition) that might have caused the confusion). She also said that it's quite possible that Jim may be released to rehab tomorrow for about four days to a week to recover before finally coming home. VBG
After she left, Jim told me had had eaten a whole bowl of cereal, half a bagel and half a honey bun this morning. He wanted me to know that he is really trying hard because he really wants to come home to his house.
I didn't get the chance to do any work today, because things were pretty busy at the hospital. Jim was doing much better than he's been in days and days. He even has some color back in his cheeks (and that was before the unit of blood they gave him. LOL his platelets etc are nearly normal but the doctors thought a "boost" at this point sure wouldn't hurt.) Jim was nearly his old self again chatting with me and the nurses throughout the day. He had one scan done (checking for clots again), physical therapy (where he finally got out of the bed for the first time in probably 10 or 11 days!), and then the MRI. Since all that came during the middle of the day, he missed lunch and was snacking on some cereal and a banana when I finally got out of there this afternoon.
On my last visit of the day, he was finally getting around to a late supper (everything was off because of all the tests in the middle of the day). He asked and I explained that he needed to be eating "more", not just eating "some". I was pleased to see him eat well over half his dinner tonight. Unfortunately, some depression hit him before his regular evening paranoia. He really wants to go home and I can't say that I blame him. I find myself feeling a little bad because instead of saying "just one more test, honey", I'm back to saying "just one more day". Those statements can be misconstrued and eventually seen for the white lie that they are.
Since I don't know enough about what happens in the rehab facility, I can't say whether Jim is well enough to go there as early as tomorrow; but I can say that he was doing a lot better all around mentally and physically today.
Although I was tired, I took some time out for myself. I had a nice hour or so of playing euchre, seeing some friends and eating fresh-from-the-oven homemade angel food cake with strawberry slices for the topping. MMMMM
Please can I have the recipe of these famous muffins. I really really need them.
i was busy today but I haven't forgotten about the recipe for the muffins. Maybe I'll get some time this weekend to get it together for you. ;) I also have to spend some time to write up a post on my personal blog requesting some donations (my domain name and server fees are due the end of may), but thankfully my friends have always been pretty good helping me with that the last few years.
thankful for a good day
mikie
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I'm thankful it was a good day too honey. Let's hope there are lots more "good days" on the horizon.
People probably don't like to think about it too much, but you know a long stay in the hospital can really change you, as a person. It can change your perceptions of life, the world around you, and your friends and family.
Getting him back home, and to a somewhat 'normal' state of affairs is going to be a long long road. My prayer is that your journey together along that road goes as smoothly as possible, and as quickly as possible.
hugs to you,
Alan :-*
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Mikie, here's hoping for more good things to happen.
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Mikie
What a difference a good night sleep makes! I hope things improve for you.
Joel
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~waiting for the recipe~
Yes, I'm still here in your corner. I read every day and worry when you don't post. I might not say something every day, but I'm still listening. I'm still sending energy.
I nearly advised you the other day to turn off your phone, but thought you might tell me to stuff it because you didn't want to miss a phone call from a nurse. The very next day you decided to turn it off yourself, and I was relieved. Keep taking care of YOU. Otherwise, Jim won't have you in his corner.
Major hugs to you. I (and I suspect many other people) hope I have someone looking out for me like you're looking after Jim.
Respect and kisses,
Ann
xxx
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Unfortunately this wasn't a good day at all.
Around 6 this morning, Jim left a msg saying that he couldn't breathe. When I got to the hospital I saw that Jim was on O2 again. He's also gotten thrush again, and was very depressed, though not very "confused".
We had only a short talk before I went to work, and when I stopped back by for another short talk right I had gotten lunch. What distressing talks they were too. Basically, Jim says that he has given up.
Yes, I said all those positive things to him that I could; but he didn't want to pay attention to any of it, so "bad" leatherman had to take over again. I explained that it would not be ME making this decision. If he was unconscious or comatose, that would be one thing; but if he feels he wants to quit treatment and come home to die (especially when he's come so far through so much), I told him that he'll have to be the one to make that decision. He'll have to tell his doctors and fight them to make it happen. I told him that I refuse to take up that fight for him; but I'll be there to take care of him if they send him home.
Maybe I should have tried harder; but I'm not going to beat myself up over this. God knows, I have tried my absolute best to help Jim through this crisis. Unfortunately, I'm just not qualified to be able to help him anymore. Because of my position, I've had to "keep my options open" for whatever the outcome would be. I've understood from the first that Jim might not make it, and I sure can understand why he wouldn't want to go through any more "treatment" to get better.
I made one more trip to the hospital this evening (all of them were short visits today). Not only had Jim not eaten all day; but he had refused some meds - the very meds that would clear up the thrush, that would allow him to eat, breathe, and talk better again. After some talking (well, fussing actually) I got him to concede to the meds, to brush his teeth, and to just let the nurses do their thing one more night. I told him bluntly that he should have picked a better night than a Fri (when HIS doc will be out of town for the weekend and her replacement filling in) to try to get AMA or Hospice out of a hospital. (Personally he can't do the AMA cause he couldn't even crawl out of the bed and I'm sure not taking him home to care for him without the adequate medical supplies. So there!)
Afterwards I made arrangements for some of our friends to contact me tomorrow. If Jim has a good day tomorrow (I'm going to hope till the end, no matter what he thinks right now) then he's going to be getting some visitors. I hope this isn't asking my friends to come see Jim one final time, as much as I'm hoping that someone else will be able to give him the encouragement that both of us are sorely lacking right now.
I found myself, after all the ups and downs of this rollercoaster, simply frustrated this evening. Not mad, not sad, not glad. Just frustrated. While talking with Jim, I really was a bit snippy; but I only shed one tear when I told him I was mad because I hadn't come to terms with his death as much as he obviously has.
I also found myself feeling that old deja vu again. My poor ol' Randy had been so consumed with thrush in his final days. (It has always scared me since. All those times I quit my meds (because of the side effects), I always rushed back to the doc to try something else as soon as I saw those first flecks of white.) Now Jim has thrush really bad. I'm talking about Hospice Care with my partner again (13 yrs, 11 months, and 2 days ago today). I'm freaked out between the crisis and work and money. And, just like with Randy, I feel myself starting to draw away.
Arranging for the friends to visit will perhaps give me time away. I also told Jim that if he was going to be coming home this way, then I was going to have to be away more in the upcoming few days, so that I can get the rest I need (and the house organized) to care for him in the next final weeks.
It was a truly beautiful Spring day in Ohio, and finally a toasty 77 degrees. So I donned a speedo, my headphones, laid out a towel and ended up falling asleep on the deck by the still-covered pool. Unfortunately it was a restless, sweaty nap as I continued to think about all of this situation. Tonight, I'm turning off my phone and setting my alarm for 10 am tomorrow; though I doubt I'll sleep that late. It'll almost be like sleeping in with no obligations ;)
mikie
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I might not say something every day, but I'm still listening. I'm still sending energy.
not that I'm counting, but I have noticed the hit count to this thread. Even though, I get IMs and emails all the time that aren't posted here, I know plenty of other people are listening in and thinking the good thoughts for Jim and I. :-*
I nearly advised you the other day to turn off your phone, but thought you might tell me to stuff it because you didn't want to miss a phone call from a nurse. The very next day you decided to turn it off yourself, and I was relieved.
frankly, I had to quit taking the "crazy" calls; and if I missed a call from the nurse (for whatever reason, even the worst reason) there's nothing I could have done to have made whatever situation any "better" in the middle of the night. I made peace with myself about the phone situation the first night I turned the phone off.
ah, but I do like to think of myself as a rational man. I've been listening to everyone's advice that I can. Although I've been through "similar" times, this time is an experience different from anything I could have even imagined. I haven't exaggerated when I've said I'm at my wit's end several times, so that means I've had to rely on the "wit" of others. Fortunately some of those people with the wit are my friends and others are the people I've connected to through this site.
As betty :-* would tell me (one day at a time). So tonight I'm heading for bed, and tomorrow I have plans for a good day or a bad day. I'll worry about those other upcoming days just before they get here. ;)
mikie
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Things are looking very badly now, folks.
I had held onto the hope that his thrush would be better this morning; but instead of hearing from Jim, it was his doctor that called me. She told me she had been informed of Jim's resignation and request to be released home. It's quite possible now, that I will take back my words from yesterday, and help Jim make that request after all.
The doctor also told me she had a chest x-ray ordered as it's very likely that Jim has pneumonia, and a new antibiotic has also been ordered. He's anemic again and running a fever (102 last night, 100 while I was there). He's only slightly confused at times today thankfully. Although it's incredibly hard to make out anything he says, he was able to write well enough to communicate a little bit.
I'm terribly afraid that "the" decision is going to fall into my lap by Monday (if Jim survives through the rest of the weekend). But at least, I have finally reached a decision on what to do. Because of how he spoke of going home the last few days (while alert and coherent) and IF Jim does have pneumonia, then if the arrangements can be made, I will bring Jim back home one last time Monday.
I would be extremely happy to receive a miracle right about now; but I just don't see that happening. AIDS, non-Hodgkins lymphoma, malnutrition, chemotherapy, thrush, and perhaps pneumonia. There's only so much someone should have to suffer through, and Jim has suffered for long enough.
Please keep us in your thoughts and prayers for a little while longer, so that I can get Jim the comfort, solace, and peace he so desperately wants and needs.
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"Please keep us in your thoughts and prayers for a little while longer, so that I can get Jim the comfort, solace, and peace he so desperately wants and needs."
.....................................
You got it. Its very sad that Jim has not been able to rally and with all the doctors are doing it would seem that he should. I am very sorry that you have to go through this but there is no alternative.
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Please keep us in your thoughts and prayers for a little while longer, so that I can get Jim the comfort, solace, and peace he so desperately wants and needs.
You both are certainly in my thoughts and prayers.
David
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Wishing you peace and strength
A
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I am new to the thread but i have been with you all the time..what can i say..i pray for you both.
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(((((Mike))))))
And because I know he needs one too...
((((((Leatherman))))))
Wishing you strength,
Ann
xxx
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Mikie, you are both in my thoughts right now.
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Everyday I come in here hoping for good news...
I'll pray for that miracle, but short of that Mikie, I wish you strength.
Paul
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Mikie,
I'll be praying for you both.
Snow
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Keeping you in my prayers --
love & hugs,
Alan :'(
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It wasn't pneumonia after all; but a pluvial effusion (fluid "around" the lungs, instead of "in" the lungs), which is still not a "good" thing; but at least not quite as drastic. Jim was only in a slightly better condition this evening - mainly because of my last ditch effort.
This has been not only a long and hard struggle for Jim, but for me as well. Then again, I'm sure you know that by now. (Obviously he and I still have a lot of negatively left in our thought processed and reasoning from the loss of Randy) I nearly lost all hope again today and seriously fear that it will be gone if a "next" crisis arises. But I've said before, it takes effort to change the things you don't like, so I came up with one more plan to force fate to go the way I want it to. I've listened to a lot of advice and put the pieces together
Part one of my plan was to get Jim to sign a new will. The only one here at the house was written in 1990 and gives it all to his ex from over 15 yrs. ago. (Lordy! Me and my Randy are the witnesses signed to this document! This doc won't get trashed though it's invalid. It's got Randy's signature on it - just another little stab at my heart from the past - there's a box of mementos just for a piece of paper Randy wrote on) Jim had talked about changing the will several yrs before (everything I have done I can honestly say I heard him express approval at some time), so I wrote up a new one and it was signed this evening. I don't know how much it'll help me in the days to come; but if it keeps the roof I need over my head, then I'll wave it around like I did the medical POA.
I also thoroughly explained his options now. One probably means another week (or more) in the hospital and then several weeks in a rehab hospital (without too much bitching about "going home" if he makes this choice); but the payoff is spending at least half the Summer by the pool with me. The other option gets him home; but not home to ever drive his car again, to even see the patio or pool again, or to sleep in his own bed beside me. It gets him a nice "peaceful" passing in the surroundings of his home. But even "peaceful" isn't guaranteed, as slowly dying isn't nice at all no matter how many pain meds you get.
Part two of the plans was to get "outside" intervention - for both Jim and I.
first, I needed some help for my own emotional state. I called RealMom and Mom-in-Law, who, though very saddened, could sympathize with where this situation is headed. They validated my reasoning and comforted as best they could. They helped me make peace with what life seems to have in store for me.
OhioMom had a different point of view though. In was at this at 7-week point, that her husband had still been hooked up to all sorts of equipment (he had no living will and was kept alive by machines for a long time) and ambulanced to a nursing-home style hospital, where, though they never expected him to live, he recovered and was home 7 weeks later.
Jim only has O2 and an IV. No one has ever called from the hospital as he was about to expire. Even in the horrible condition that he is in, it's still better than the OhioMom's husband was. I guess it really is still possible to hope! (this rollercoaster never stops! this must be our third time around this track LOL)
secondly, I needed witnesses to Jim's new will, so the Ohio mom, her son (my best friend, besides Jim, of the last 20 yrs) and his wife (who visited Jim the other day.) all came in together. Actually the real reason I needed them was to encourage Jim; but they worked out good handling some more of that real-world-that's-going-by-me important paperwork.
As they arrived, joking and glad to see Jim, he perked up the most I had seen him the whole day. For a while, our gadfly friends chatted Jim up about a new vehicle OhioMom got, a new out-of-town job her son had just come back from, and which of the "nieces" and "nephews" were sick or maimed. LOL
I nudged OhioMom into gear, and she spoke so softly and so eloquently, saying so many things that I was unable to say today. She talked about her husband's illness and recuperation; she talked about her own trauma from being the caregiver. She explained Jim's up and down illness (which brought a laugh to us all, as Jim was still having difficulties speaking, so he undulated his hand in a dramatic effect and we all knew he meant "the rollercoaster" of this crisis. LOL); and the hardship I gladly bear already caring for him, as much as the grief if I was to lose him. Everyone else in the room took turns, adding their own words of support and encouragement.
Oops. pardon me for a moment while I go tend to my cocker having a seizure! This makes the third or fourth one he's had in the last few years and the last one was just a little over a year ago I think. Ah, the fun never stops at leatherman's house of horrible happenings. - - - - Well there was another 15 mins of my life spent caring for another being in physical distress. LOL I've been keeping an eye on Aries for a while as he's lying right by my feet, and I think the worst it over. (I have officially decided NO more dogs or boyfriends when I finally "get rid of" the ones I have. ROFL )
Back to my plans.
I don't know how well the second part of part two of plan worked. Jim smiled some and perked up, adding rolls-of-the-eyes and hand gestures to stop OhioMom from going off on one of her many tangents. After brushing his teeth, and clearly some thrush out of his mouth, he was able to speak to all of us some and was a part of the conversation. However, just before I left, he last words to me were "doc-tor isn't com-ing in till mon-day,[big breath] right?" I knew that meant he was still wanting to leave the hospital with Hospice on Monday. Hopefully he'll think about the things we said, and try just a little bit longer.
Tomorrow's plan is already forming. More friends are scheduled to visit (at Jim's request, one at a time) and a few phone calls are going to come in. I've told the call-in friends that he might not be able to reply well, so tell him that you understand why he can't speak much, give him some support, and just let him know that you care.
There's still a day and a half of ups-and-downs we can have on this rollercoaster before we reach the spilt in the tracks on Monday. If "going home" is still his choice, the doctors will have their own bits of advice to add. (Did his viral load drop significantly yet? Did the MRI show any brain problems? Did the scan reveal the tumors finally shrinking after the chemo?) I hope the intervention plan and some improvement in his condition will steer us one way; but I know if things don't change enough (or heaven forbid, worsen!) then our spinning wheels might fly off the tracks.
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Everyday I come in here hoping for good news...
I'll pray for that miracle, but short of that Mikie, I wish you strength.
Goodness knows, I keep hoping to post some good news too, buddy. ;) I miss the old days (just back in Feb, which seems like eons ago to me now) when I was rambling on about one one of "Jim and mikie's excellent adventures" - sans Jim - traveling across America to the sunny, and much warmer South. Back then I was duking it out with "betty" and "the haund" over who knows what, and posting about the trivialities of life. LOL
I promise you all, I'm really hoping that soon, I can post a great update about leaving the hospital, then just update you every couple days on how rehab is going, then the impovements every few weeks, and finally end up with the story of Pooltag3! If we can ride the coaster that long, you're all invited!!
But until we can get off this ride, I thank you again for your heartful words of support. I pass them along to Jim every day.
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I don't know you or Jim but I cry and laugh and hope when I read your posts.
I will be keeping you both of you in my thoughts with hope for nothing but the best out come.
AA
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Things didn't improve by this morning and the three main doctors had no possible prognosis (good or bad) for several more weeks. That's not good news though. It means Jim would have to continue suffering like this for a few more days to see if his viral load was dramatically low; or another three weeks until they could scan him again - and then with no outlook on whether the tumors would have grown, or shrunk.
Jim was very alert, though still not able to talk much. He definitely made his wishes clear to the doctors and me. He's tired and he wants to go home. Well I did make that a part of my promise such a very short (though it feels long) time ago. He has certainly done his part and tried for as long as he could; but it's time now that we face the inevitable.
Early tomorrow morning, several of the doctors are meeting with Jim and I. I'm certain they're all on board now for releasing him from the hospital and getting Hospice to get things set up. I'm imagining that by tomorrow afternoon, an ambulance will be rolling up to the house again.
I have had to call all my friends as I did almost 14 yrs ago to help get things cleaned up, and come in to sit with Jim while I run errands over the next few days. The same cast of players who helped Randy and I, will now be helping Jim and I.
Also like with Randy, I feel that Jim is sick enough that he won't be home too long before he leaves me. I never dreamed I would be so sad like this again in my life.
Thank you for your support while Jim struggled in the hospital; but it is time to give up the fight against odds that are too high. All I ask now, is that we all pray for Jim to have a swift, peaceful passing back at his home.
leatherman
(who heart is breaking all over again)
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Mikie, I don't know what to say. Day after day all we could do for you was listen, hope , and pray, and it wasn't enough. My heart goes out to you both.
Paul
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Mikie, I am so, so sorry to hear this.
I'm hoping for peace for you and Jim.
Luv,
Betty
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I am just shattered......
Why Mikie???????
Love
Hermie
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Mikie
I am sorry for your news. I wish you and Jim strength and love to carry through tomorrow.
Hugs
A
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My heart goes out to you Mikie.
My prayer is for strength and courage for you both, for mercy and for peace.
love,
Alan :'(
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Can you stand to stay on the ride with us just a little bit longer? You may want to just wait until tomorrow morning's post to really evaluate the situation.
My plan seemed to have actually made a small difference this afternoon, and extended into the evening. As we were nearly finished with readying the house (with medical supplies, tables, chairs, linens - everything but that damned hospital bed) and getting it sparkly clean, Jim called me. He said he wanted to talk to me about something very important and asked when I could come back. Of course, all the cleaning supplies were put away, the last swipe was mopped across the kitchen floor, and we were out the door.
At least for now, Jim's attitude has improved and he has said that he's willing to continue being treated for a while longer. He allowed the blood transfusion, that he refused this morning; and he even ate a few slurps of jello and a piece of grilled chicken breast. It was all a very very difficult chore for him to do; but he gave it a good try. We talked again about waiting for some more conclusive results (by mid-week) until such a "final" decision is reached. The hospital gave him some sort of sucky-tube thingie that has helped him keep his mouth cleaner - which has helped to make his speaking a little better.
So this afternoon, Jim was back to really considering his chances and options, which is a good thing. The best way to make the right choice is to have it be an informed choice.
There is still a pow-wow decreed for about 730 in the morning with Jim, me and the docs. The nurses know of his change of heart this evening; but I kept hospice on call, just in case.
I'd like to be more enthusiastic; but as one of the nurses was saying to me, we have listened to Jim request leaving the hospital for hospice care for about the last 6 days. While it may have started during a "confused" time, it continued through the last several days of clarity. Days in which he was exposed to the facts of what each option truly would mean. ("Going home" sounds all fine and dandy; but in this case it means "death")
You know how I have analyzed every bit of the situation and tried to always make the right choices. I really did think this morning that we had made the right decision - though a tragic one. However, it's not like anyone is in a rush for Jim to pass away, if he wants to try a few more days, well, he's already there in the hospital so they might as well keep caring for him. I'm all ready if this is going to be a turn-around for Jim (I told him too that he'd had to curtail the crying about wanting to go home all the time if he was going to commit to waiting a few more days. Trust me, I said it lovingly, but firmly).
However, I still must be prepared for the outcome more likely to happen. If Jim's condition worsens by in the morning, or by the next day, I really would expect him to call it quits. And I can't say I'd blame him.
I'd also hold some reserves about Jim's change of mind; because of what I believe some of the reason to be. (Remember, what I know, he knows; we finish each other's sentences; my mind to your mind sort of crap. LOL) Jim is saying that he will try because he is doing it, not for himself, but for me. The thought of how devastated I would be to have lost a second partner, and at nearly the identical time of year, may be what spurred him to "wanting" to try to hang on a little longer.
Perhaps it was my own "good guy" example coming back at me. Although Jim and I really were acting like a couple for the last 7 years, it's only be official since Dec 2004. From the day I made a commitment to him (which was an emotionally hard choice for me to make after losing Randy and being alone and sick for so many years), from that day, I have taken my meds as much as possible. (You know me, can't puke on the roller coasters, so no meds when we go to an amusement park LOL) I tried to be as compliant as I possibly could and I have the numbers to prove it! I finally even reached an undetectable viral load! I always love pointing out the graph of my numbers. You can easily tell when I changed for Jim, because the lines have been nearly level for four years.
I did that for him, because in making a commitment to this relationship, I felt obligated to try as hard as possible to never have Jim have to care for me the way I did for Randy. Not that he wouldn't do that for me; but because that what's you try to do when you're in love.
Usually they say you have to want the change for yourself and not for someone else's sake. I don't want Jim to needlessly suffer just for my sake, so I hope that he wants it for himself also. Who knows though? I did it for him; maybe he'll be able to return the favor, hang on a bit longer, and finally recover.
I promised I'd help him through this, and I'm more than willing to try as long as he wants to - no matter how bonkers it makes me. Facing your own mortality is a difficult thing. Once I chose to leave a hospital and let whatever happen happen. But I was alone, bereft of Randy and in a different mindset back then. Jim's got me and I'm happy to accommodate his whims. So right now whatever happens tomorrow morning is anybody's guess.
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Before I finally crash for the night and pretend to sleep, I have some other news about the hospital. Things are rather odd on the 8th floor right and those wonderful nurses must be as frazzled as I. On one side of the hall are at least 4 patients recovering well. With loud boisterous visitors, and doing their exercises walking down the hall, there's alot of activity going on.
On the other side of hall is Jim whom they have cared for so many days, and whom they know may be giving up after such a long time. Another patient in critical condition has been moved in to the room next to Jim's. It's that nice older man that shared the double room with Jim so many weeks ago. They had both been expected to be released on the same day back then, and while Jim had low O2 had stayed, this man finally got out (and as well he should have! He had been in for 4 more days than Jim had right as Jim neared the 30 day mark). The older gentleman did well for a week or so, but had returned during this last week. Tonight his kidneys had shut down and the hospital was making him "comfortable" rather than giving him any further treatments. His wife and I compared our sad, similar situations over the last 50+ days. The conclusion to that couple's travails is now inevitable; while the future for Jim (and I) is not yet written in stone.
unsure of what tomorrow morning will bring,
mikie
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Arriving at the hospital at 630 am (omigod! I was up before the sun was!), I was pleased to just sit and watch Jim sleep for nearly an hour. I know he was pleased to see me upon opening his eyes because I got a smile and a wink. Ahhhh! :-*
His attitude change (from "going home with hospice" to "giving it a few more days to turn-around") was still in place. The doctors, giving him the news that his blood counts (platelets, white cells, hemoglobin) were all going back up, were happy to hear that he still wanted to wait a few more days. His GP told him how much she understood how terrible he was feeling and that she understood Jim would be just taking this day-by-day hoping to get some improvement.
After the doctors left, I got Jim shaved and washed up. We ordered breakfast, and I ate his frosted flakes, while he tried a popsicle. He's still having a terrible time swallowing (even liquids), so hasn't been able to take his HIV meds the last two days. Some of his other pill meds have been switched to the IV for the time being. Physical therapy was in today, and Jim did 5 extra reps of each of the exercises - trying to impress me that he was really giving it his best shot. (It's nice to see my old Jim back the last few days, even if he is so desperately ill) After all that, Jim was ready for a nap and sent me home.
I have scheduled up people to visit him throughout the day, and everyone is keeping in touch, so there aren't too many visits wearing him out. It'll be tricky to balance enough visits to keep his spirits up without too many visits keeping him from resting; but we'll work it out. Though I was up way too early, I don't go back until this evening, so maybe I'll nap by the pool again this afternoon.
This may be nothing more than a temporary reprieve (for me mainly), but I appreciate Jim's effort. Yesterday, I was seriously faced with the fact that he may be coming home soon and not coming home to recover. I got my mind wrapped around that (meaning I freaked out and was nearly unable to stop crying all yesterday during the day), and now feel better prepared to face up to my duties of caring for him if he comes home to pass away. (having been a caregiver before I know it's like that. sometimes you break down for a while; but when it blows over, it's easier to go back to handling the details) Having some time off from the hospital, and knowing friends are there filling in for me, sure has helped too.
both of us still hanging in there,
mikie and Jim
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Hi Mikie
Its good to know how things are going with you. Was there ever any discussion about the dementia being more serious than thought. I think it was one of your Moms who brought up the subject with you.
Joel
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Was there ever any discussion about the dementia being more serious than thought. I think it was one of your Moms who brought up the subject with you.
Yeppers, it was the mom-in-law, a former nurse, along with you (with all that scary, but good-to-know info, about PML) that talked about the dementia problem.
The pysch, the neurologist, and the ID doc checked out all the possibilities and said Jim's brain is ok. He's as crazy as he ever was. ROFL
But really, we're all just figuring that it was an extreme case of "hospital psychosis" because of the extended hospital stay, multiple room changes, and malnutrition. Ever since the nurses got Jim transferred back to the 8th floor, giving him some extra attention from familiar faces, the dementia problems have cleared up. I would have never agreed to the hospice option yesterday morning, if I thought he wasn't coherent enough.
Part of me can sure understand why Jim went "crazy" for while; heaven knows how many times I've said I was at my wit's end and had no clue how to deal the drastic ups and downs of this roller coaster ride. Living on the edge of the knife (technically, he is still ill enough that the hospital could call me at any time with the dreaded news) for so many days is unbelievably hard. For all I know, the hospice option could be back on the table by tomorrow morning.
Taking it day-by-day is very easy to say (and everytime I hear it, I think of you, Betty ;) ) ; but living that way is extremely tough sometimes.
hugs,
mikie
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Oh OK. This is actually GOOD news. We can assume that given the proper circumstances he can "pop out of it" and be "normal Jim" again.
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Taking it day-by-day is very easy to say (and everytime I hear it, I think of you, Betty ;) ) ; but living that way is extremely tough sometimes.
hugs,
mikie
Yeah, it's tough and sometimes not always possible; but for me, it relieves the pressures of trying to figure out what to do tomorrow.
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Dear Mikie,
Still sending you good energy and my best wishes. Wishing there was more I could do...
JD
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Oh OK. This is actually GOOD news. We can assume that given the proper circumstances he can "pop out of it" and be "normal Jim" again.
He's mostly "normal Jim" now (only a little "fuzzy" at times); but he's definitely "depressed Jim". That's why after my short nap this afternoon, I was back on the phone arranging visitors for the rest of today and tomorrow (and just in time! he called me at 4 and I had just hung up on some friends on their way over to see him. I'm in the clear till after dinner now). If Jim is going to hold on a few more days to see if he can overcome the chemo, then everyone is going to have to pitch in. So far, so good today.
We're at a point where "if the disease doesn't kill you, the cure sure might". Many people do die from the chemo; others give up, unable to hang on long enough to "try" to recover. Right now, Jim is living on that "borrowed time" we talked about earlier. If he can pull through this (and then several more chemo treatments - but that's in the future and we're talking about day-by-day living, right?), maybe Jim will get the chance to enjoy living "extra time".
Even though I should be thinking about right now, it is disheartening thinking into the future. If he does pull through this low point, then there will be more chemo in probably 3-4 weeks. Hopefully, he'll recover enough, or we may be at this same point again. I factored that into my thinking yesterday as Jim seriously considered just going home. I sure wish I had a crystal ball. This could all be easier to handle, or an easier decision to make, if we knew whether Jim would survive all the chemo treatments. Sigh. All those times I had to make this kind of a decision with my sick or old dogs, and even with Randy with no treatment options left, I knew the ending and knew when to call an end to the "suffering". We've got no guarantees at all this time, so I won't know if our decision to continue on with treatement is right or wrong until either the chemo ends and the cancer is in remission, or Jim passes away - which means I could know within days or continue wondering throughout the next yr. ::)
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Leatherman-
I am new around here. Please know i am thinking of you and your partner during this difficult time. You have had a lot to go through, keep your strength and spirits up. I hope things improve and you guys can be back by your pool together sooner rather than later.
Love,
Tim
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After leaving Jim this morning, making sure friends were stopping by all day, and making arrangements for more visits tomorrow, I didn't return to the hospital until dinnertime. I wasn't planning on staying very long; but coming back after a trip over to my OhioMom's for a while. However, Jim broke down and asked if I would stay the night. (I think that was my clue to what was coming later in the night) I told him I'd need about an hour to run home, grab some sweats and my pillow, feed the dogz, and pick him up some jello.
When I returned, he wanted a serious talk. And boy, did we talk! He has whole-heartedly decided to leave the hospital tomorrow and come home. I too think it's best to bring him home now while he can still talk some and actually get some enjoyment from returning to his home. Since his body is already out of the habit of eating or drinking, after removing him from the O2 and IV nutrients, I expect Jim's passing while come fairly quickly.
Just before the hospital locked it's doors up for the night, I made one last trip to the car for a smoke (or 2 or 3) while I called the Moms and told them Jim's decision. And it was a good place to be alone for another crying jag.
I had planned to stay the night with him (lying on another of those fold-out chairs) but around 1am, with nurses popping in every half hr, and (according to Jim) my loud snoring, he told me to go on home, so I could get some rest. I promised to return by 7 so that I can help him talk to the doctors, set up things with hospice and get him released.
I'm not surprised at this turn of events, as I told the moms, for I had thought we had only put off hospice care for a day or two anyway. Poor Jim is just no better, and can no longer bear the pain, nor the "torture" of the hospital. I have to agree with him, that this treatment seems more like torture and I am so sorry that he has had to endure so much with so little results. But we had to try, and we all gave it a good try.
With everything ,except a hospital bed and pain meds, all ready at the house, tomorrow I'll bring Jim home. There'll be no yelling at him to eat. We'll watch "Nightmare before Christmas" and "the Phantom of the Opera", and we'll take it one day at a time until the end.
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Oh Mike, I'm so sorry. I'll be sending extra doses of strength. Please don't forget to take care of yourself in the coming days.
Wishing peace for you both,
Ann
xxx
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Mikie
I don't know what to say other than that we are all here, listening and wanting to offer you some comfort. Wishing you strength and love for the coming days.
A
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Mikie, I know you'll make Jim as comfortable as you possibly can. Yes, you did give it a try. Sending you a huge {{{{HUG}}}}. I'm so sorry.
Luv,
Betty
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Mikie
This seems so .....final.
I am sending you a big (((((HUG)))))).
Joel
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Of course, none of this has been easy on Jim and I; and trying to get him out of the hospital wasn't easy either. First thing this morning, his GP and one of the cancer docs (both who had been "ok" about asking for hospice on Monday) wanted to talk about nothing except how the sores in Jim's mouth were getting better and that his blood counts were all climbing back up. They didn't even want to entertain the thought of Jim leaving with hospice. But Jim pointed out that we had been told he was "improving" before and this was day 50 in the hospital and his condition was still terrible, so their optimism was misplaced. The docs relented a bit, and said they would send the Hospice counselor around to speak with us, and we could "decide" tomorrow.
Jim and I talked a bit more, as I tried to calm him down about not leaving the hospital today. No sooner had I left and gone home, than the counselor came in and I went back to the hospital. While she talked with Jim about why he wanted to leave and what he thought hospice care really meant (it's not like Jim and I haven't discussed the subject to death the last 4 days), the Infectious Disease doc and the other cancer doc stopped by. We now know a new viral load; but it's not accurate at all. Jim's original result was 300,000; the count now is dramatically lower at only 500. The problem is that Jim's white cell count is so low, the HIV hasn't had any cells to attack to reproduce. In reality, he has more HIV than white cells running around in his blood, so percentage-wise, his count of 500 is actually very high. The cancer doc discussed whether Jim would even want another treatment in a few weeks, after having such bad side-effects this last time.
By the end of the meeting, a decision was finally reached. The hospital bed and O2 condenser are coming back to the house this afternoon, and Jim will be coming home tomorrow morning, after another diflucan IV drip (to help with his mouth and throat sores). A hospice nurse will also be coming to our house tomorrow to set us up with pain meds, aides, and a schedule for the nurses to come in to attend to Jim.
Although it's possible that Jim will perk up (by coming home and from the treatment he's been receiving) and even obtain a bit of recovery, with no further chemo it will be just a matter of time before the cancer does him in. Counting off the fingers on one hand, Jim thinks like I do, that his time home will be short.
With all the crying Jim and I have done over the last few days, I hope that I've cried enough. It's time for me to change my attitude so that as I care for Jim, his final days will be as peaceful and calm as possible. It's a very hard attitude adjustment for me and my family and friends to make though, as all of our feelings are tempered by our remembrances of Randy who passed away 14 yrs next month.
:'( mikie :'(
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praying for you both - not sure what else to do.
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:'( sitting at work crying... so many thoughts right now. what a premonition you had when picking a title for this thread. I'm sorry I can't express much - my heart is with you both :'(
((((Mikie))))
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Mikie and Jim, I am thinking of you.
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i meant to post this last night. as I'm getting ready to go to the hospital one last time this morning, my thoughts aren't totally sad right now. I've got to cling to a little hope for as long as possible. Jim has wanted to come home so badly through this terrible hospital experience, and he deserves a miracle so much, that I thought you should read this.
After such a sad morning, it's rather odd but Jim and I both seem to be feeling a bit better.
Just knowing he will be home tomorrow, Jim perked up this afternoon. He had a handful of visitors, and talked much more than he had in days. Along with sitting up more, actually watching the TV (when he's sick and conscious, the TV is off. if he's sick and delirious, the TV has been on whatever station he clicked it to), he had the window blinds open all day and only took one short nap. Though it may not be the hope of recovery, the hope of soon being home after so many days, reinvigorated Jim.
The guy that set up the bed and equipment back at our house, had delivered last time, and wondered what had been going on. He said he saw this kind of situation all too often; but he offered a story of hope. His finance's father had cancer, and after the 2nd treatment and 33 days in the hospital, left with hospice care unable to bear the chemo side effects. He laid at home like a dead man for a week, and then recovered just a bit. He even started eating some food again. Three months later the man dismissed hospice care and lived for another three years. Although I've resigned myself to Jim's passing, this story gave me a glimmer of hope of that turnaround we have so been waiting for.
I think both of us felt better too just having made "the decision" finally. During my evening visit, we chatted quite a bit while watching several sitcoms. It was very nice to see him focusing on things besides how bad he feels. I haven't seen him really watch any TV since he's been in the hospital until today. He's also been listening to my mp3 player, and was even humming along to some songs.
Realistically, do I expect a turnaround? No. We haven't planned on his return to be anything other that Jim coming home to die. However, do I still hope for a turnaround? Heck, yes! As I've always said, death is the only problem that can't be fixed. So which way will things go once Jim gets home? We should be able to tell within a few days probably.
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I hope Jim feel better once he goes home. Wishing you both peace.
Ford
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I hope everything goes well with getting Jim home.
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It's never wrong to have hope. Wishing the best for you and Jim, and for peace....
Alan
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Hoping for a smooth transition from hospital to home today.
Peace,
JD
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Hoping for a smooth transition from hospital to home today.
Peace,
JD
Indeed. And I am praying for you to guys also.
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Jim was feeling no better when I got to the hospital this morning. On top of feeling like crap, he is, of course, very depressed - as are many of us around him. Several nurses stopped by to wish him well, and several others offered me words of comfort.
By ambulance again, Jim finally got to return to his home today just after noon. Rather than pull into the driveway, the crew unloaded Jim by the street allowing him to see the starting buds on the dogwood tree in the front yard, and to see his house for the last time from the outside.
After the crew transferred him to the hospital bed set up in the living, Jim beamed a huge contented smile to be back home. He made me promise to never take him (or his body) back to the hospital.
The coordinator/nurse from Hospice Care was over within an hour or so. Of course there was a ton of paperwork, instructions, prescriptions and details to discuss. Although I've been through this before, my anxiety level here on the first day home is quite high as I want to do my best to give him the care and comfort he needs to get through. Thankfully, after 50 days with Jim in the hospital, I know how to perform the routine caring/cleaning duties; but now there's a whole batch of meds that I must familiarize myself with.
Our OhioMom was over twice - once to welcome Jim home, and then to sit with him as I ran to pick up all the meds and some supplies. Later in the evening, my OhioSister and her two teen-aged kids stopped over for a brief visit. Once we were alone, Jim told me that it wouldn't be much longer. Sadly, I agree.
Though it was a busy day, as evening fell, Jim wasn't very sleepy; but very uncomfortable. A bout of cramps made him moan and cry for nearly 15 minutes. I was very distressed watching him writhe in pain, unable to comfort him. After the cramping subsided (and I cleaned up his soiled linens), I administered a round of his meds, including the pain meds. Within a half of hour, he was feeling no pain and began to finally doze off during American Idol. Hopefully, Jim will be able to sleep most of the night.
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Hoping for strength for you during this most difficult time, Mikie. And peace and relief for Jim.
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Mikie,
I am so sorry you are going through this again. Jim is so lucky to have you caring for him. I wish you both peace and strength.
Snow
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Mikie, this is my first post here but I have been following it from the beginning, all I can say at this time is I hope you find the stregth to see it through to the end..and for Jim I can only hope that when he is ready he will pass in peace and free of pain.
Love and hugs to you both.
Hugs
Jan :-* :'(
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Jim (and I) had a couple of rough spots through the night; but I did manage to get 2 3-hr naps and Jim sleep almost as long.
Today was another busy day. Jim's hospice nurse and the home health aide both came over. I'll tell you what, it's a lot easier rolling a patient, cleaning them, changing linens, and getting the patient back to being comfortable when there are two of you. The nurse and aide (Donna and Donna) got Jim bathed and shaved, and took care of several small sores he's developing. They went over the meds and saw that I had everything handled (heck! I'm keeping charts of what meds I'm administering so I don't get confused)
Since I'm no dummy and the nurse and aide won't be back until Mon, I brought an old friend of mine over to help this weekend. I explained to Jim that I just couldn't be a 24/7 nurse and that this friend had been the one to help me take such good care of Randy while he was at home his final days.
Jim's physical condition (oh, bad news! I had forgotten to mention that the morning Jim was released, the doc told me that he does have a little touch of pneumonia) has remained stable - no worsening; but no improvement either. However, where I had hoped coming home would improve his spirits (and it did for the first evening), the opposite has happened. He tells each of his visitors that "it won't be long now"; while in private, he asks me to guess how long this could drag on or asks me not to let it last too long.
I've been having to dreg up those old memories about Randy, and try to relay to Jim some of what to expect. (I know this dregs up bad memories for some of you too; but can you imagine going through it all a second time?!? At times it's so surreal, I can only be numb.) It's a tightrope to walk trying to determine whether to discuss topics rationally, or emotionally. I'm trying very hard to be supportive and not cry (sad and resigned perhaps. wonder what you call that emotion?); while sometimes I have to let down my guard and show him how much this is killing me too. I know you'll understand when I say that I long for the day when this is over and I can just rest.
Right the last round of meds for tonight and before I go lay down for a few hrs, and let my friend take over until I'm really needed, I should tell you a bit more about me. Today I got to see my doctor again; but this time I got charged for his time. LOL Yes those blood results of mine were in and to be honest they are what I expected.
Last time, the lab had forgotten to do the tcell count, so we guessed it at the regular 250. Now they're 225. Not really terrible for my counts; but I prefer to have them closer to the 300 mark than the 200 mark, because at 200, things can happen - bad things.
The viral load blipped up again (from 189 to 2530). Each of the five blips since 1/2006 has been lower than the previous one, which means the blips aren't getting worse; but it is another blip, which isn't a good thing. But I was expecting some sort of blip after having not been very compliant with my meds, stressed out about Jim, not eating or sleeping properly for the last 2 months - the list of the reasons is a long one.
The biggest problem with this blip is that it comes at a time when I wasn't uncompliant NOR totally compliant to my meds. Now there's the possibility that the virus has become resistant to my current meds. Thank goodness again, I can say, that the meds are better nowadays! Where just a few years ago, I didn't have any more options; now there are probably 5 other types of meds I could switch too.
So the doc ordered up a genotype test (to determine the resistance factor to what meds, and something about a crr5 receptor, and blah, blah, blah. Actually I did understand it all, and have no worries with the doc's line of thinking. (he loves showing me off to the new interns. Not only am I a smart patient; but a patient with compliance issues on a "salvage routine". Oh, and I have a ponytail and had my picture in the paper LOL) At aidmeds.com, I've read up about all those drugs and tests and results. No, I didn't commit it all to memory; because it wasn't a problem for me. I paid attention today; but I'm not worried about the details because I'm too busy determining how to read a 1/2cc of morphine, 2 teaspoons of prednisone 2X daily for two days and draining the foley bag.
But, back to the test. Since it's better to find out sooner and later if the meds I'm taking are even working, I went to take care of that, while I was out of the house for a while. And where do I have my labs drawn? Back at that same damned hospital I thought I had finally left just on yesterday!
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Jim was much weaker today. When he wasn't sleeping, he could only talk in short quiet sentences. Although a few in the family were still holding onto hope; I've seen this stage before and believe the end is very near.
Can you handle one more instance of deja vu?
When I brought Randy home, he only lived for nine days. Between the first time the nurse visited to the second, she was surprised at his decline. I remember the nurse telling me how sorry she was the end came so fast, usually Hospice Care tends to last for several weeks. If she had realized Randy was as ill as he was, they (Hospice) would have done more sooner (Randy passed away after one the second visit by the nurse. They really didn't end up doing very much at all to help because of how the situation progressed.
I think it's happening all over again. Since the nurse and aide were here on Thurs, they decided on a M-W-F schedule - that means that I have to (after only one nursing visit) deal with a three-day weekend before help arrives. I believe that when they get here Monday they will be very surprised.
However, there's a slight chance things might change tomorrow - as a Hospice social worker is scheduled to stop by in the morning. I'm not certain what her job is; but perhaps (if Jim is capable) she'll be able to help me straighten out paperwork. I haven't found Jim's birth certificate yet (when I have I had the time??). I know nothing about the house or car loans, and only have a witnessed signed will.
I found out today when I called Jim's workplace (and heard the answering message he spoke and I put together with music back in Dec) and found out there's no life insurance. Screw the house and car, I don't know how I'm going to have him cremated.
And my friend who came over to help? Her gall bladder problem started acting up and she's either been asleep upstairs in my bed all day or downstairs in the bathroom puking. I'm sending her home tomorrow and trading her in for another one of our friends - a nice young guy (straight and cute) who offered to help out.
And me? With two sick people in the house, I've been busy as heck. I tried to gather paperwork together today; but that was a lost cause. Thankfully, our OhioMom brought over spaghetti and I did eat dinner.
Jim is still demanding me stay by his side quite a bit. And he's earned that right; but the laundry, the dogs, the meds, all call for my attention too. I am trying to stay by him a lot though, as neither of us believe it can be too much longer. I just wish Jim would quit having nightmares. They scare him so. And when he's woken up and grabbed my hand calling out for his mommy and daddy to help, it's more than I can stand.
:'( mikie
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Mikie, I'm wishing for strength for you, dear. I hope someone can make it over there to really help you. And still wishing for peace for Jim.
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What a terrible night it was here at "chez leatherman". Every time one patient would moan or groan it got the other one started. My friend was able to pull it together and help me clean up Jim twice; but was still quite ill by the morning, so we called her daughter and had her taken to the ER.
(oh my! she did call me this afternoon and left the info about what room she was in and I never got around to calling her back. But I did get to add another hr and a half onto the half hr of sleep last night, so I'm sure she'll understand when I call in the morning)
The Hospice social worker arrived in time for the chaos of my departing help. While Jim was occupied with the departing guests, the hospice worker had a checklist of items to talk about ranging from Jim's emotional state to religious needs to funeral arrangements, even to the availability of "bereavement care" for me afterwards. There's so much to think about and so much I don't want to think about. Caring for Jim really does occupy all of my time now. (here I am supposed to be thinking day-by-day and they're all making me think about next week. hmmph!) But thank you friends and family for prodding me into thinking about the things I HAVE to think about.
Thankfully, my replacement help arrived on time, and things got better for me. OhioMom brought the friend over and they stayed with Jim while I dashed out on a round of errands (I just had to get away from all of it, even if for a half an hr. I did get lunch so the trip was good for me that way too) By the time I got back both Jim and our friend felt confident enough that things could be handled, they both demanded that I go take a nap. After an hour or so, a few more visitors stopped by (OhioSis again, and the friend I took the SC trip with way back in Feb when this crisis all began) and I got up to assist.
Trying to take another nap, I found myself crying as I contemplated who I would call in what order in case of Jim's passing. As I tossed and turned a while longer, I started writing Jim's obit in my head. I napped a bit more and came downstairs for dinner and Jim's bedtime meds.
Hopefully, tonight will be better with fresh help. Hopefully, Jim will rest more peacefully than he did last night.
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mIkIE
My heart breaks with every one of your postings.
God bless.
robert
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I was glad to read you were getting a little more help and were able to eat a little bit. Jim is very lucky to have someone who loves him so much and understands how to care for him. My thoughts are with you both.
AA
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Mikie
Damn. That sounds like things are really in high gear. I am amazed at your ability to post through this but hope that it gives you some peace.
Joel
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Still reading everyday Mikie, deeply saddened by it all, and awed by your strength and devotion to Jim. I'm glad there are friends and family around you so that you can take some care of yourself through all of this.
Paul
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I'm still here, Mikie and thinking of you and Jim during this most difficult time.
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Still reading everyday Mikie, deeply saddened by it all, and awed by your strength and devotion to Jim.
This is exactly what I've wanted to say. Thank you, Paul, for putting the right words in my head, and thank you, Mikie, for having the strength to share all of this with us.
Sad and Respectfully,
Creighton
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What a difference a day makes. After having stayed stalwart through the crisis of the sick help**, I mellowed out and was able to get some good sleep with our other friend helping out. He's been a real trooper through quite a lot now and has my un-dying gratitude. All three of us even slept in on this Sunday morning from about 5 to 10 am. Then this afternoon, I finally got the chance to break down a bit and have my emotional needs tended to.
(**she's in the hospital now with either a urinary tract or kidney infection and has sepsis. she sounded 1000% better on the phone and may be released tomorrow. I told her that Jim and I had heard that line before. LOL You gotta watch those hospital, they won't let you go!)
This afternoon Sunday at my OhioMom's came to our house. My OhioSis (still full of blind hope**) came over and cooked beef and noodles and whipped some mashed taters as the side dish. While she was hoping Jim would be tempted by the smell and at least try the broth, I very much appreciated some real home-cooked food.
(**not that I'm complaining but it must be my lot in life to be caregiver and comforter. Each of our friends is at their own level of acceptance or denial of this situation, and I found myself ministering to their needs - and getting them to accept the inevitable - as much I received comfort from them.)
While dinner cooked and the aroma wafted through the house, Jim even played some euchre! But frustrated as he was that his hands won't work properly now, I called the game over (his team won 4pts to 2pts with Jim the high scorer!) when a few other "Sunday dinner regulars" dropped by for a short visit.
While Jim and our friend/helper entertained in the living, I received comfort sitting out in the garage where we had to move one of the sofas to make room for the hospital bed. Although I really hate all the crying I've done, it was good to have things going smoothly enough that I had some time to release some the pent up grief.
My mom is trying to make arrangements to come up from SC to help me obtain legal aide and get some of the paperwork finished. However, I'm not certain if she'll be too late by the time she arrives in the last half of this upcoming week. Whether she arrives in time or not, I'm very happy she's coming - I need my mom right now. Perhaps we can get legal things done in time to insure I keep the house; but if not, at least, she'll be here to help with the final arrangements.
Things are definitely down to "days", if not "hours".
-
Sending you peaceful thoughts, Mikie. Hang on, just keep hanging on.
-
Mikie
Damn. That sounds like things are really in high gear. I am amazed at your ability to post through this but hope that it gives you some peace.
Joel
EXACTLY, Joel, it's amazing. Mikie, know that you and Jim are in my thoughts.
Peace,
JD
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It feels like a knife in my heart, to read your ordeal.
I have been checking up on both of you every day... and yes, I fear the outcome.
But I repeat how much I admire your strength Mikie.... Jim is lucky to have your around in all of his pain and suffering.
Thinking of both of you here in Belgium
Love
Hermie
Who still lites his candle every day, in your honour
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I hope it will be a comfort to you to have your Mom there with you.
Are you hooked up with legal aid through your ASO?
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My hart goes out to you and I would love to help you if we were closer.
It takes a community to help one in need mental & physical support. Bless you
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Mikie,
I don't have words to express my sadness over the situation you are going through at this time. All I can say is that I am thinking of you and Jim everyday.
-
After the big Sunday get-together, Jim had a tough evening clear up to about 1 am. I was very anxious through the whole time, both fearing and hoping that it wouldn't be much longer. However from 1am to almost 8pm, all three of us sleep - fitfully, but we slept.
This morning though I had to make a series of hard phone calls. First to the local funeral home, and then to the local cremation society. The man running the local branch of the society will be coming by at 10am tomorrow to make arrangements. Then I called the local family services org, that runs the AIDS programs, to ask about legal aide, etc. The Ryan White Fund won't pay a mortgage payment; but will pay legal fees for a will. Next was a call to legal aide. Luckily (ha) with my $500 a month and Jim not working for the last three months we qualify for assistance there too. Their rep was supposed to call me this afternoon; but didn't, so I'll be back on the phone tomorrow.
Jim is awake for shorter and shorter amounts of time now. Thankfully during the daytime, he doesn't seem to have the nightmares (that have plagued him since that first night in the hospital) that come each evening. The aide was in early this afternoon and got Jim bathed and cleaned up. (Last night my friend and I got Jim cleaned up and even got the sheets changed - he spilt coke on the bed while we were playing cards; but me and another person did it too, it was just that kind of night LOL). The nurse came in later (how sad! two new hospice patients today), and decided it was time to adjust Jim's meds to a higher dose of morphine to try to combat the pain. (She wasn't crying looking at Jim while we talked; but I could see it in her eyes. Everyone knows that it's soon now.)
Our friend (Mary) that went to the hospital actually had a bladder infection; but is doing much, much better. She was released from the hospital today, and stopped back by to pick up all the things she left the other day. Other friends brought baked chicken an noodles for dinner, along with their new puppy for Jim to see. Puppy kisses never hurt anyone! ;)
While the crowd was leaving yesterday, Jim asked me what we should do for Sean (our friend who has graciously offered to remain here as long as needed) to thank him for helping us. I'm not certain; but I promised Jim I would definitely make it right.
and yes, I fear the outcome.
. .
Jim is lucky to have your around in all of his pain and suffering.
. . .
Who still lites his candle every day, in your honour
Ah, and this is the rough time. While I still dread and fear losing Jim, I find myself hoping the next deep shuddering breathe or groan is his last. But I've been here before. I know when that happens both sadness and relief will well up and clash. Deep sorrow that he'll be gone, yet blessed relief for both of us when his suffering is over. Jim has suffered more than anyone should have to.
Though I had only been able to show Jim the luminere that was sent to him from a wonderful person in these forums, when he came home Wed. I told him how I had been lighting it every night, wishing well to Jim, the other 8th floor patients, Hermie, and all of you people who have shown such support. Every night, per his request, as Jim gets his final meds of the day, we turn off the O2 and light the luminere and think of you as you think of us.
I hope it will be a comfort to you to have your Mom there with you.
Are you hooked up with legal aid through your ASO?
I hope so too; but my Mom can drive me crazy at times. LOL However, I need someone with a saner head, who has gone through some of this before (like she helped her mom with legal affairs when my grandfather passed away).
There you are with that good advice again. ;) and just this morning my Mom mentioned contacting something like Metrolina Aids about legal assistance. I did find an old life insurance policy here but will need the legal help to see if it's worth anything. Now if they'll only get back to me in time!
All I can say is that I am thinking of you and Jim everyday.
Although I should be thinking day-by-day, I do have a couple thoughts about MY future. One, after things settle down a bit, will be to get on the Chantix again and off the cigarettes! Second, in a while longer, will be to volunteer with Hospice. They have positions from clerical (I started in data entry, and am the "computertutor", so I got those skills), to speaking engagements (Have I told you I had a speech minor in college complete? or about playing Snug the lion in 'Midsummer Night's Dream'?), to home health aide (god knows, after 50+ days - I'm not counting any more - of doing and watching, I have those skills down pat! although I can never quite get the depends on right. LOL), to bereavement counseling (oops. I probably need that more than I can give that for quite a while), to volunteer aide. Maybe that's the position. I can handle a little bit of any of those jobs, and I know how badly someone can need that break from constant watching over their loved one. Just having Sean here so I could go get more Coke and cigs or supplies has taken a huge weight off my mind. Oh, I never go very far lest I get a phone call to come home, but for a few minutes I get out in the fresh air and away from it all.
Thinking about immediate plans though, I put out another attempt at help. I called the dealership where Jim and I worked many years and talked with one of our good friends - who just happens to be the big boss' secretary. She reads my blog and is up on how things are. I asked her to see if a petition for final arrangement donations could be posted. Tomorrow I'll call Jim's recent boss and propose the same thing.
See, with no life insurance, I just don't have the means to pay about $1300 for cremation and an obit. Isn't that truly sad? I believe even without ever finishing up his disability claim, that Jim might be entitled to about $250 from Social Security - but I'm not certain. I am certain that my family is graciously putting up some money; but I now need to turn to friends and aquaintances as arrangements will be made soon (I may have NO choice on when to make them).
(If things had gone differently, this was about the time I ask my blog readers to send in a donation to keep my domain (reigningpages.com) online - a measly $150 or less usually. Of course, it's due on the coincedental/deja vu date of May 25th (more on that later). But this year, more important matters take precedence.)
So I humbly ask that if anyone would care to send a donation, it can be sent to me at our address, just mark "for Jim" in the memo space. I promise all contributions will go solely to the cost of cremation and the obit. Anything left over will go to flowers at a memorial service. Contact me for more info.
Finally, a bit about the memorial service. One the first night in the hospital, I had a thought. Several nights later, when Jim received the cancer diagnosis, he mentioned the same idea to me. It took me a while to ask my mom-in-law her approval of our plan. I had to use email because I could barely think of this request without bursting into tears, much less speak the words. She replied the next day, as I knew she would, agreeing that Randy would have approved too.
More than likely, on Sunday May 25th, I am holding a memorial service to Jim, over in North Lima OH, at Randy's graveside. I've already written the eulogy that properly pays respect to Jim, while acknowledging the loss of the two men I have loved. After scattering Jim's ashes there, I'll leave the gravesite as broken-hearted as I was 14 yrs ago, leaving Jim to Randy's care now.
mikie
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Wow Mikie. What a beautifully written post. And so heart-breaking.
It's such a shame that it cost so much to die and have a proper service following death. I, again, am so, so sorry you're going through this extremely trying time. I think of you and Jim daily and will continue to do so.
Much luv to you,
Betty
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It's such a shame that it cost so much to die and have a proper service following death.
It is rather a disturbing cost, isn't it? I changed the total from about $1000 to $1300 this morning after talking with the rep from the Cremation Socitey. It's $895 for the cremation, another $72 for at least 4 death certificates (at $18 a piece - and I remember from losing Randy that I'll need those), about $150 to run a 25 line obit in the 2 local city papers (those he esitmated it at $200), and a $50 home removal fee for a grand total of $1217.
There's no fancy urn this way, just his ashes in a cardboard box; and no service of any kind. The rep did tell me that cemetaries "frown upon" scattering remains at a gravesite (not for any health reasons but they make $$ to bury an urn). I doubt we have a problem as Randy's grave is in a small church cemetary on the other side of the road from the church. I'm not certain how many we will have at our "unsanctioned" memorial; but a few flowers tossed over the ashes should cover our activity - besides we're "only" there to comemorate Randy's passing 14 yrs ago.
Thank you already to those who responded to my request here, along with several more friends. Jim's ashes won't be released until the bill is paid; but since our memorial isn't until May 25th, I'll actually have a few weeks in May to get together the remaining money.
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Jim was fading away more today. He barely wakes up now. Once when he did and asked for water (for which I had to use a "lollipop" sponge to actually give him the water) he patted the side of my face and say I was his boy, his very good boy. I think he might have mistaken me for Zeus, one of the cockers. LOL (their life has been so confusing too. Alone all that time while I was in the hospital with Jim, then confined to the bedroom alone at night, and outside most of the day; but Jim is so easily disturbed throughout all his sickness, that we've been trying to stay as quiet as possible.) Every time I let them back into the house, Zeus always runs up to the bed, stands up and checks on Jim. If he can reach far enough, he slurps Jim with a big ol' kiss. Regardless of whether Jim knew it was me, or thought it was the dog, it's the sentiment that counts.
I had to call the on-call Hospice nurse this evening and Jim's dosage of morphine was upped again. It's scary sucking up that whole stopper of pinkish, raspberry morphine. Oh I understand that it's to abate his pain; but that doesn't make it any scary giving those doses to the man I love. The fluzanacol is finished, and he hasn't stayed awake long enough today to take any prednosone. Our friend Mary snagged us a mask (when she was in the hospital) to use with the nebulizer rather than the tube contraption, so it's been easier to give him the albutarol for his breathing today. His urine output was next to nil today. He is so wasted away now, and his thin little arms are drawn up, hands clasped (kinda like he's praying) under his chin.
I also talked with a paralegal and lawyer from Legal Aid today. The will I have should be fine. However with the deed and will (which I turned over this afternoon) there's a chance a "quick claim at death" can be filed to make the house automatically mine; otherwise I'll have to get a lawyer myself and go through probate to settle Jim's affairs.
I hope the lawyer stops by her office in the am to check on this "high priority" case before running a "will clinic", or this might not get done in time. My mom and her husband (originally from up here in Ohio) will be arriving by tomorrow night. I still don't know if things will get resolved in time but everyone is trying their best to help me out.
I don't think I'll be sleeping much tonight. Not from worrying about any of those problems; but from listening and waiting for Jim's last breath. Surely, it can't be much longer now.
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I wish for peace and the end of suffering for both Jim and you. Both of you are remarkable heroes.
Love or what you will....
Edfu
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Dearest Jim and Mikie,
I am sending you peace as well.
Peace to accept what is coming and knowing through the pain of letting go there will be a relief of the earthern pain.
I admire you strenght tremendously.
A warm tender hug to you and to Jim....
Herman
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Just want you to know I'm still here Mikie. I follow this thread extremely close. Peace to you and Jim.
Luv,
Betty
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(((((Mikie)))))
Peace to you both...
Ann
xxx
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I pray for Peace and Mercy for Jim
love & hugs to you Mikie,
Alan
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Mikie,
I'm with you in spirit and following this closely... :'(
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I pray for peace for the both of you - amazing men you both are with an amazing love.
Terry and Richie
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Just sending some big, warm hugs to you and Jim tonite.
Paul
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Oh goodness, Mikie, I haven't checked in for so long because I have had probs of my own to deal with.
None of mine compare to your situation.
I am so terribly sorry about everything. It haunts me to read your posts as I have deja-vu of my own with regards to my late husband. I can't believe what you are going through.
I will PM you, sweetie. Give Jim a hug for me tonight.
~ Cindy
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Amazingly after his 1am meds, Jim and I were both snoring by 2 (Sean had been asleep since midnight. Poor tired guy; but what a great guy!) and didn't wake up until 6. We awoke at almost the same time, and Jim looked over and said "good morning mikie" and probably gave me his last wink. (I can't wink very good, so I blow kisses. Jim winks at me and I melt.) Jim was hurting some by then; but I got that taken care of fast.
The health aide was over and got Jim all washed up and fresh linens again. Last visit, she had taught Sean and I how to get the diapers on Jim correctly - after 20 yrs on the job, she had a ton of tips to pass along. Today, she taught me how to deal better with an issue from last night - how to change a patient that is unresponsive and unable to assist.
Besides speaking to me this morning, and a little bit in response to the aide, Jim was very unresponsive and asleep most of the day. While Sean and I have been creeping around the house lately and keeping the dogs quiet, things began to change after the aide's arrival. She spoke louder and in firmer tones. I also noticed that Jim wasn't being bothered any longer by the petty little noises in the house. As the day wore on, I finally starting puttering about the house doing light chores since they were not disturbing my honey's rest.
The nurse was by soon afterwards. She discussed more of the signs to be watching for as the end is drawing nigh. I think I saw the only sign that matters to me today - about 3pm was Jim's last tiny sip of water. It was at this point with Randy, that I called his parents to come over as the end was imminent.
Around 6pm tonight as I was realizing that Jim was no longer drinking, it was my Mom who came over. (I'm so very glad to see my Mom and yet so very sad. I'm just full of conflicting emotions right now.) They left SC this morning and made good time. She called me twice to tell me that they hadn't been stuck at the tunnel, nor did they cross into Ohio and run into a blizzard. Unfortunately when I called my trip-partner from Feb thinking that she would get a kick out of hearing about those calls, I found out she was at the hospital where her grandfather is about to pass away. - oh and my mom-in-law is having serious back problems with a possible surgery at the end of May. She (a formerly LPN) had been planning on coming over this past weekend to help out but is unable to sit in one position for drive a car for the 50-60 min. trip over here. - This is one bad spring all around up here with me and my friends, I'm telling you!
After staying for a few hours this evening, my Mom is coming back tomorrow, armed with office supplies, to help me sort through the stack of Jim's papers that I have been collecting from all over the house. I'm hoping Legal Aid calls me in the morning, and I get the quick claim deed handled very, very soon.
Tonight we've been playing episodes from "Xena" that I checked out of the library. See, weeks before this started and before we got the new TV service (att u-verse), we had been getting tons of movies from the library (I was posting over in the "movies, movies" thread back then). Just before Jim went into the hospital, we had checked the library catalog online, and requested the Xena DVDs. During Jim's hospital stay, season 1,2,3,5,and 6 had come in; but since I had no time at home to watch and there was no player at the hospital, I just kept returning them. The day Jim came home (a week ago today) he asked me to check them out again. For five days the damn things have been "in transit" and he asks about them every one of those days. Finally, today, when he's not awake to watch, the Xena discs are here. So I'm playing them for him anyway.
I think Jim had a sentimental attachment to the Xena show and me. Back when the show was first airing, I was recovering from my two pneumonias and finally starting to come back to life. Jim came over and got involved in the series that me and my roommate deeply loved. (one of my OhioMom's daughters -the LPN turned RN) (Why pack #2 of cockers were named Gabrielle, Joxer, Aries and Zeus from characters on the show LOL) During those years, Jim was like our "third roommate" and it was during that time that we actually fell in love and began our 7 yrs together.
I've asked Sean that at least one of the two of us be awake at all times tonight, and he thinks that's the best thing to do to - especially since I plan to make sure Jim stays medicated every three hours. He's suffered enough pain throughout this whole ordeal and really deserves the relief, now more than ever.
Thank you for all your continued support, thoughts, and prayers.
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It haunts me to read your posts as I have deja-vu of my own with regards to my late husband.
I've said it before and I'll say it again, that's probably one of the biggest reasons I ever came to these forums. I find the discussion about LTSs quite humorous at times. Not to disparge anyone, but a couple of yrs on meds isn't the criteria.
I think living with this f-ing disease for over 16 yrs, losing friends, being in the hospital and especially losing a partner sure fits the bill though. (or maybe that's just the anger phase of my current situation speaking out) I was saddened, yet comforted, to come to this site and find so many others hurt and "left behind" as I was. I found people who understood the depths of grief I had come through to get where I am.
Making this even worse for me is that I too am reliving the loss of loved one, as I write these posts each night. I've been very careful as I write; but as I have talked with many of my friends occassionally I have said "Randy" instead of "Jim".
The hope I cling to is that I made it through this once before and I'll make it through a second time. That's exactly why I knew I was going to recover the second time I was hospitalized with pneumonia. I had beaten it once and I'd defeat it again. I hope I have the strength you people say that I have so that I make it through losing a partner again.
It's going to be a long night tonight. I hope Jim finally finds peace.
mikie
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Mikie, I'm still here, thinking of you and Jim frequently. I wish peace for both of you. You can do it, baby. I know you can.
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Good Morning, Mikie, I am thinking about you and Jim non-stop, hoping that somehow my strength helps a little.
I would say, "I just can't imagine.....," but I've been where you are and it breaks my heart.
Take a deep breath and pray for peace.
~ Cindy
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As the evening progressed last night, Sean and I discussed Jim's deteriorating condition. Although he wasn't in any pain because of the morphine, his breathing was more labored and he began to sound congested. I tried to stay awake through the night but dozed off about 5:15 am. At 5:30 my alarm, which I set for the next round of meds, went off and Jim was still with us. When the snooze rang again after a few minutes, I realized I could no longer hear him breathing. By the time I got over to him (about 5:55, in another moment of deja vu), I knew he was gone.
I'm so very sad that Jim has gone; but so very glad that he's no longer in the pain that he has been suffering with these last three long terrible months.
Rest in Peace, my love
James Arthur Pollnow
July 29, 1956 - May 1, 2008
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I have been keeping up with everything, Mikie. Sorry for your loss but Jim is in a better place and at peace.
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Mikie
I am sending you my condolences on the death of your partner Jim. May Peace be with both of you.
Joel
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Mikie,
I am deeply sorry about your loss.
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Dear Mikie,
I'm also very sorry for your loss, but at least Jim is no longer in pain.
I'll keep sending you peace and strength through the coming days - and a reminder to make sure you're taking care of YOU.
Sorrowful Hugs,
Ann
xxx
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Mikie, I'm sorry for your loss, but you've been so strong through all this, I'm hoping it will be be downhill from here, as far as settling everything.
Best,
Creighton
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Mikie, I'm so sorry.
Strength and Peace to you, my friend.
JD
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Oh No, Mike. Jim is at peace. but I am so sorry.
Pleae please, now take care of yourself.
Please promise us all that you will take care of YOU now.
May the next days be easy and as less stress as posible.
We all love you.
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Mikie, this brought tears to my eyes. I am so deeply sorry for your loss. Jim is no longer suffering.
Please take care of you and accept any help and support you can get from the people around you, as well as what we can offer hear (an ear, a hug). I wish you strength, peace and love in the coming days.
In sadness,
Betty
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I'm thinking of you Mikie and your loss. I hope you will find a slight bit of comfort, even though he is gone now, knowing that your partner is not suffering.
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Thinking of you and wishing you some peace and comfort at this time.
Sharkie
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Mikie,
Your a very brave, and caring, loving individual. I am saddeded at Jims passing. You were there for him to the end. Peace to you...
In Sadness------Ray
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Leatherman, I'm sorry for the loss of your friend and partner. Now that the bad times have passed, try to find comfort in your memories of the good times. :-[
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Mikie~
I am so sorry for everything that you and Jim have had to endure over these past few months. I know this has been an extremely overwhelming time for you. I was saddened to read of Jim's passing, but I understand the peace that you must feel now, knowing that he is no longer suffering.
You have been a brave, strong trooper through all of this, Mikie.
Jim couldn't have asked for anyone better than you to see him to the end.
God Bless You, my friend. :'(
~ Cindy
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Dear Mikie,
I am so sorry for your loss. Jim was very lucky to have you as a partner. Please make time to take care of yourself.
Wishing you comfort and strength.
Kent
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Mikie,
I'm so sorry that Jim has passed. May he rest in peace.
During the next few days, and especially after that, please take good care of yourself. Keep checking in with us and let us know you're ok.
Thank you for reminding us that true love exists.
Paul
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The day started in the worst kind of way and rather than level out, the roller coaster continued on.
After Jim left his home for the final time, I had one thing that HAD to been done. That hospital equipment had to go! By the time I returned from Randy's funeral arrangements, my house had been put right, and was my home again. I knew this time I would have to bear more of that task. Within a short amount of time, we had everything dismantled and in the garage, with the sofa back in the house (only in a slightly different arrangement to accommodate expected visitors throughout the day.)
After waiting for a while, I called the medical supply place to verify that the hospice on-call nurse, who had attended Jim, had called in the pickup. I was told they would call me after 1 pm to set up the pickup time. But wait! There'll be more about that later.
Then legal aid called (while I was on the phone about the pickup). The message left said my will would NOT stand up in court. They were making a new one and a "transfer at death" order and wanted to come over tomorrow at 11 to have the papers signed! Oh no! Jim won't be signing anything, and the will isn't good enough now?!? Oh, and the lawyer would be out this afternoon but would contact in the morning. My return voicemail explained that Jim had already passed away and what the heck was I supposed to do now?
My mom and her husband took me to lunch (mmm. Old Carolina BBQ - and in Yankee land! It's a fav spot for Jim and I), and we discussed options. One unsavory option is that the state takes over Jim's estate, sells the house and pays the bills. Mom mentioned that in that case the state would also be responsible for the disposal of the body; but I have a big problem with that.
(I explain more about this in just a moment; but leave it that we talked about all sorts of scenarios. Now here's more the supply pickup story I promised.)
On returning home, I found a "we were here, you were out" note from the supply company. Nope they hadn't called to tell me that they would be there. They also didn't feel right taking it from the garage without permission. So now they won't be here until tomorrow morning - 24 hrs later. Argh!
Now it's very late afternoon, and the rep from Heritage Cremation Society has not contacted me like the men had told me this morning before taking Jim. Unfortunately after this recent hospital experience, I've very leery of what is happening to Jim while I'm not there. I understand that they are required to wait 24 hours; but without a call, can I really be sure that things are still going as planned? Remember the food/pain med crack Jim slipped through.
And that thought alone makes me take issue with mom's one scenario. I must pay for Jim, and must get his ashes back! If the state takes over, I'll bill the estate to reclaim those costs. However, if - I - don't insure that he is properly treated (once again), I'm afraid his remains might end up shoved away to the side somewhere, like how he was treated in the ER. :'( :'( :'(
There's no rest for the weary. I'm so tired but so unable to stop yet. However in the morning I must call and speak with medical supply, legal aid, and the crematorium. Perhaps enough of these issues can be resolved before the weekend (at least the equipment should be gone, and a little more security for me about what is happening to Jim now). Then I'll finally get a day to rest after all this time.
still looking for some peace,
mikie :'( :'(
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I know how inadequate it sounds but I am so sorry for you loss. It's terrible that you have to be put through so much when you are grieving You are very inspirational in the way you have handled everything that has been thrown at you making sure Jim was treated right and with love and dignity.
love,
AA
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Mikie,
I can feel how shattered you are, but relieved, at the same time, that Jim is no longer in pain.
Loosing two lovers is atrocious....what a brave man you are.
But in the end it remains utterly sad that Jim has passed away...
Sending you my condolences and lots of bright white energy to accompany you and Jim in these final hours on this planet.
Love
Hermie :'( :'( :'(
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Hang in there, Mikie. Please remember to eat and drink and take care of yourself as best as you can right now. I think you're doing an amazing job, keeping up with all of these details.
~ Cindy
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Mikie, good luck handling these final, troublesome issues. Please take care of yourself. And accept again my sincerest condolences.
Luv,
Betty
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Dear Mikie
You have been so strong all through this and I hope you can find the extra strength you need to see you through all the other issues you are having to deal with.
Jim is at peace, the pain has gone.
Hugs from NZ
Jan :'(
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Dear Mikie,
I am so sorry, words cannot express it. Please accept my deepest condolences.
I so much admire your spirit, strength and resilience at this undescribebly difficult time. I hope all the legal matters will be resolved asap and that the peace you so desperatly need will arrive very soon so you can get some rest.
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~~ mIkIE ~~
We feel your grief and send our love during this sorrowful time.
The worth of your character...and Jim's....comes through loud clear in your postings. Thank you for sharing.
robert
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My deepest sympathy on your loss, honey.
I pray that you find peace and comfort in the wonderful memories you have.
with love and sorrow,
Alan :'(
Dear Father/Mother God,
Receive our brother Jim into the arms of thy mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light.
and so it is......
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There is nothing we can say to make it better right now. Know that we are here for you in spirit, and that we are sending love and strength your way.
I have been praying for you and Jim since this all started. I will continue to pray for your strength and well-being, always.
Your writing moves me to laughter, tears, and everything in between. Thank you for sharing with us...
Tom :'(
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Mikie
I am so very sorry for your loss. You have been very strong and loving in bringing Jim back home, where he wanted to be.
Sincerely
A
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Sorry for your loss, awed by your courage and perseverance in the face of all this. Your friend is in a better place. You gave him his last wish, To die at home with his loved ones. Hope time helps your pain. Cristy
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I'm so sorry. Words fail me, but I share your sorrow at his passing.
ronnie
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I think enough things are okay right now, that I really will finally get that "day off" tomorrow - and even Sunday too!
First, that damned medical equipment is finally gone!
I spent most of the day talking legalese. Legal Aid's problem with the will was that the witness signatures weren't dated. So I picked up the papers, ran by my OhioMom's house and added the date.
Yesterday, my Mom and I had spent the afternoon gathering up all Jim's paperwork and sorting into appropriate folders. My Mom had come armed with a file box, folders, markers, etc. She was OfficeMax-armed and ready to do battle! Today, Mom further subdivided the paperwork and made lists of outstanding debts. It's actually quite difficult because we know so few answers about certain bills, car leases, etc.
Since legal aid doesn't do probate, my mom in her infinite wisdom, had already arranged an appt. with a local lawyer. My sister-in-law helped out too, calling me this morning and discussing the advantages of filing a claim to be "administrator of an estate". The lawyer was more afraid of an outstanding creditor (like the bills that already total up to $90k+ from the hospital) claiming administrator privileges and selling the house to recoup the debt. His advice was to continue paying the house and utilities and let things ride for the time being, rather than stirring up the creditors looking for a piece by pushing for "ownership". Plus the mortgage equity loan for this house is actually $60 less than what I paid a month in my old dinky house. Theoretically, I could end up paying off the mortgage and THEN claim the deed on good faith and the will - and after many of the debtors will have written off Jim's accounts.
However, I'm thinking that a move will probably be in my future - but that's a decision for another day. I made sure that the lawyer felt confident that I could at least live by the pool for one last summer before the you-know-what might start hitting the fan.
My Mom and her husband headed out from here as evening came. Instead of heading back to SC, they're heading a little further north and west first. Mom's husband has a daughter (she lost her husband (46) to cancer just a little over a yr ago) who lives about an hr and a half from my place
By early evening (ah, it's so much lighter later into the day now. It's good to not be in this damned dreary Ohio winter anymore), still no call from the Cremation Society, so I called. Now I feel better about that too. The rep had actually been quite busy on the case. The doctors sig on the death certificate had just come back late today. Things were lined up already to notify Social Security, etc. He was just waiting for it all to come together before coming out to see me on Monday.
Having spoken a long time with the rep the other, I had found him to be a very compassionate man. He and his wife run the local office; but had previously been living in San Fran. Having lived though the early 90s there, he totally understand my situation and had dealt with it many times. I explained to him today about how afraid I was of Jim "falling through the cracks" and he seemed genuinely sorry to have caused me the extra worry.
So with things going so-so, there's nothing I have to do this weekend; but have dinner with the OhioMom on Sunday and play some cards. I really need to mow; but thankfully, it's been raining too much and I can't mow. Those dandelions will just get to keep on growing for a while longer I guess. LOL
Well, there's something else I'll be doing this weekend and that's being sad. Luckily, trying to handle all the paperwork of Jim's life has keep me busy. I haven't been able to dwell long on how I'm raiding all of his personal belongings - many of which are mementos of his parents who died at 45 and 56 leaving him alone around 18. I haven't been able to think about how there are closets of clothes I'll have to sort through. I've haven't been able to ponder the "guilt" feeling thinking about he could be watching my every bad habit now.
But most of all, I've been busy enough to not dwell too long on how everything is different. No longer do I need to feel like I have the car out too long, or that I should be getting home to Jim. I walk through the house thinking everything is now "mine" - not "his", not "ours". Checking his email, as I was doing for him while he was in the hospital, I realized I wouldn't be updating him ever again on his email or snail mail letters.
However, what I can't keep out of head with keeping busy, is that I no longer have my best friend to help me through all of this. I can't talk to him to get his opinion of what "we" should do. So many times during the day, I really needed Jim's advice and support on what to do - but my "other half" is gone, and I've become just "half" a person again.
Right now, I'm hanging in there "okay". Thankfully our friend Sean is staying at the house with me through the weekend; but Sunday night, after dinner and cards my OhioMom has planned, he'll be heading back to his place and back to his own life.
Then it'll just be me and the boyz (the spaniels) in our big ol' lonely house. God, how I miss Jim so much already. Next week is going to be rough.
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Thank you all so much for your support during the last few months. Knowing so many people were out there worried and caring about us kept me going on through some of the hardest days. Unless something else comes up, I probably won't post much more in this thread as Jim's story is nearly over. There's not much left except finalizing his arrangements, retrieving his ashes, and holding a memorial later in the month.
hugs to you all!
mikie
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Jim's story may be nearly over, but his story is yours as well, so it lives on both through you and the words you've posted here. You've told it magnificently, and it is one of the greatest examples of devotion, caring, and passion between two men whose love is denigrated by so many. Both your stories will also live on in this remarkable, awe-inspiring, frightening yet uplifting thread on AIDSMeds.com, a thread that has received nearly 10,000 viewings to date. Those of us who have followed your diary-journal have felt we were with the both of you on this sad journey and will never forget it. I hope the support expressed by so many here truly helped you through this ordeal, but I also, in some strange way, feel your effort to share it with us reminded us of some extremely valuable lessons, courage being only one. Spinning your wheels, you have created here a significant memorial to Jim.
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It's been a week since Jim passed away and I thought I should catch up you on a few of the loose ends.
I guess I'm hanging in there okay. After my friends kept me occupied through the weekend, I started my "new" life alone, after returning home Sunday night from dinner with my OhioMom. I'm not crying as much anymore; but I never know when the tears might start back up (getting a sympathy card from the Hospice nurses, aide, and social worker started them again this morning). After a week though, quite frankly, I'm getting annoyed by being alone so much. It's kinda like I keep waiting for Jim to call or come in the door from a long day at work.
To fill up my days, I've been working, slowly, on that Spring cleaning that I missed while at the hospital with Jim over the last two months. Since I'm holding an open-house on May 25th for friends, family, co-workers and neighbors, I'm trying to clean up as much as possible to make Jim's house presentable for his guests. Thanks to my Mom's help, all of the paperwork in the house has been sorted and filed away. The friend that stayed through the weekend, helped me clean out the storage areas upstairs. Taking breaks from the dusting, wall washing, and sorting through Jim's belongings, I've made a lot of progress on sorting through his family pictures. For the open-house, I am planning several displays of his childhood pictures, his parents photos, vacation photos, pictures of his passion - cars (pix of his viper and other cars, and even a few racing cars he has driven), and various awards he won being a car salesmen for most of his life.
The only items I haven't had the heart to sort through yet are Jim's clothes. Having lost two partners now, I must say that dealing with the clothes is the hardest part. Just looking at a shirt brings to mind seeing Jim wearing it not that long ago. For now, I'm just piling all of the clothing scattered throughout the house into one closet. Maybe in a week or so, I'll be able to handle tackling that chore.
(One of my more interesting chores has been sorting through the p0rn. LOL Boy, I thought I had a lot; but with my stash AND Jim's, I probably have enough to open my own adult bookstore. LOL At least I know sorting through all the mags and videos will keep me busy for a while. ;) )
In sorting through Jim's stuff, I have come to realize just how lonely and alone he must have felt most of his life. His father died at 45 of a heart attack and his mother passed away at 56 from cancer - leaving Jim alone at 18 years old. His grandmother passed away a year or two later, leaving the only relative, a cousin, that he hadn't seen in the last 15 yrs. All of the photos and memorabilia from his parents and his childhood were all stored in the back of the attic and an unused closet downstairs. Obviously, he locked away all of his childhood and feelings. I getter understand the man I first met 20 yrs. ago - aloof, definitely in the closet, reserved but domineering. Looking back, I can see how I influenced him and how becoming part of my OhioFamily got him out of his shell, and brought joy, family, and companionship back to his life.
Another thing I should mention about Jim actually helps me find some peace with the events of last week. During his last three days, his fever had returned. Though I have no "medical proof", I'm sure that meant that the tumors had NOT shrunk from the chemo, and were still actively sickening him. (the death certificate lists "pneumonia", "lymphoma" and "HIV+" as an "influencing factor") I'm certain that our decision to bring Jim home saved him from more suffering, pain, and mental anguish as he languished in the hospital another month before passing away anyway.
Oh, and one last thing concerning Jim. I got a call from the hospital social worker the other day. It seems the hospital can apply retro-actively for a welfare medical card. That means the hospital bill and even most of the doctor bills can be covered (up to 90 days past) and not be out-standing debts against the house. That's good news towards helping me get the house sometime in the future.
I had a visitor late Tues afternoon - the rep from the Cremation Society. When he had called earlier, I didn't actually get the chance (nor did I try to hard) to tell him that I did not have the full payment. However, he did kindly take the $400 I have collected so far. (I just finished up a job so I can get about $400 more to make another payment. Any more donations would still be greatly appreciated to finish paying this bill. Then I have to figure out how to pay this month's mortgage and all the month past-due utility bills. Yikes! The idea of getting the house in my name may just be a pipe dream if I can't keep up the payments.) The rep, who had brought along the death certificates because he thought he would be receiving full payment, very graciously (and without comment) left the certificates AND Jim's ashes with me and didn't hold them until full payment was made. Before the rep had even pulled out of the driveway, I broke down crying. He just didn't realize how much those ashes meant to me. I have finally seen Jim through it all and he's safe back home.
Well, since I finally got the grass mowed (the neighbors have already mowed twice during the last few weeks, so I had to fight some really deep grass), it's back to worrying about the bills, puttering about the house, sorting through stacks of things, scanning pictures, sorting through the digital pictures, cleaning, and being lonely.
Thank you once again (I keep saying that, but I really do mean it!) for your support, concern, cards, and donations.
mikie
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At the two week mark, I should be my usual self and be honest - I've been having a very hard time lately. I handled dealing with a lot of things pretty well. Cleaning out the clothes in the closets - which some people suggested I get around to doing sooner than later - wasn't as bad as I thought it would be; but taking Jim's digital pictures off "his" computer and realizing that they are now "my" pictures was pretty difficult.
During the last few days, it's been sinking it more and more that Jim is really gone, and any ol' thing might just set off a crying jag. I had nearly forgotten, after the last fourteen years, how much I hate the way depression can take a hold of you. Of course my family and friends are keeping tabs on me and trying to do what they can; but no one can solve this, and I'm just going to have to ride it through. (oh god! I nearly quoted brokeback again. heaven help me, but Ennis del Mar was right! LOL)
I've still been working hard sorting through things in the house. (It was NOT a mess beforehand. Really! I told you how I had cleaned up for Jim's return. Cleaning and Yard Work is what I live for. LOL It's just that Jim and I had only "partially" merged our belongings, so I'm having to sort through and clean up "his" stuff, "our" stuff, and now "my" stuff.) My OhioMom and Sean have been over three times now to assist with the chore. Not only is the house getting super-cleaned (for the open-house); but we've been cataloging all the stuff. OhioMom keeps the list; I handle display, lighting, and taking the pix (of course - I'm the queer and the only one of us three with an artistic flare. ROFL); and Sean packs things away. Next week I have to start researching the items, perhaps checking with coin and stamp dealers, and/or ebaying stuff off. I've got to do something or when the month past-due house payment and the two month old utility bills and car payments get a little more past due, it will make the question whether or not I can keep the house a moot point.
One of the biggest problems to being poor is that you always need the "upcoming" monies right now. After I get something sold off, wait for a few more promised donations to come in, get the obit printed and get some more donations, and get a roomie (Sean) at the end of the month, things will hopefully get better. Unfortunately, this isn't the kind of stuff I can deal with on that "day-by-day" basis. If I do that, then me and the doggies just might end up homeless. This is the time of life when, to make things change for the better, it requires effort and patience - and right now I just can't wait and I'm still tired from all my expended efforts of the last three months. (being a "caregiver" is a very exhausting job when you're dealing with a very sick patient)
It's been three weeks since I saw my doctor and yesterday was the return visit for the genotype test results. I don't know if it came from my recent "non-compliance" with my meds since the last time this test was done was 5 yrs ago or so, but my little hiv buggies have mutated again. (it's the k103 mutation this time) Once again I'm losing a med - and not one that makes me sick or is large. Argh! Last time I had to drop a med it was the smallest one I've ever taken! This time I'm losing two pills a day (viramune) which never caused me any problems. Dang it! It's quite possible the rest of the meds I'm on will work fine without this one. I'll be going back to the doc in a month (omigod! I've seen my doctor just waaaay too much this year! that also means blood work again in two weeks) and we'll see how these meds are doing. At least, there are some options out there for me if I need to change meds.
It was very reassuring, in a way, to see that my doctor is quite worried about me. Since no obit has been printed yet, he didn't know that Jim had passed away. Since I had just seen the doc a few weeks ago when Jim was back home, I only had to update him on Jim's passing and the fallout in my life. (like how even taking acyclovir, the recent stress broke out the herpes infection in my hand - think of it as a 15-yr "re-occuring shingles outbreak localized in the middle digit and palm of the left hand" - and it is very painful this time.) The look on his face as I explained to him about my tenuous grasp on life (the house, car, money, cremation expenses, depression, anxiety, insomnia, etc) told me what he was thinking. He's afraid he's about to see me slide down like I did after losing Randy (he even mentioned that earlier in the appt), or as potentially one of those who go off meds because their shelter and/or home-life has gone to hell in a hand basket. (Trust me doc. I worry about the same things.) It's probably the reason he scheduled my next visit so soon. I have a feeling he'll be watching me like a hawk throughout the summer. None of that is a complaint though. Hopefully with my friends AND doctor looking out for me, I'll avoid further "deja vu" in my life and the aftermath will be better this time (no skyrocketing viral load and plummeting tcells like last time; ending up hospitalized twice in three yrs).
Today the rep from the Cremation Society stopped by again and I gave him another 1/3 payment ($400 - leaving one more payment of $417). He told me that he had understood about my feelings about having Jim taken care of, and was glad to have already brought Jim's ashes over; he also said they normally didn't print the obit unless the bill was paid in full. However, he's going to go ahead and print the obit for me (now on wed instead of Sunday to make the announcement closer to the day of the memorial and open house) since I've paid up so much already and he understands the position I'm in. That way, hopefully, some more donations will come through so that I don't sacrifice another house payment to pay off the cremation.
Using my insomnia to the fullest, many of my chores are completed now. I've been able to start arranging photo albums, awards, etc around the house, and start planning on the refreshments for the open house coming up next weekend. I even developed a couple of slideshows (his cats, the pictures he has taken, and my pictures of Jim from the last 10 yrs.) to run on the three computers throughout the house. I also have some videos to play that are pretty amusing (Jim racing his car at Nelson Ledges Raceway, Jim and I on the RipCord at Cedar Point, and a very old VHS tape of Jim AND Randy (both of my guys!!) indoor bungee jumping in the Cleveland IX Center).
Part of me is dreading next Sunday; and part of me will be glad to have this phase over. I had started a eulogy for Jim on the night he came home from the hospital and finished it up over the last few nights. The memorial at Randy's gravesite is going to be quite sad as I leave behind another partner; but the open-house (with the displays and slideshows running) will be a "happier" occasion giving everyone (and me!) a chance to remember Jim as he was before he entered the hospital and to learn more about him and his life.
Then, when it's all over, it'll just be me and the doggies again. :(
mikie
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I had been told that the obituary for Jim would be printed on Wed. (May 21st); however it was actually printed in this last Sunday's paper (May 18th).
I have planned a private memorial for Sunday May 25th for family, to be followed by an Open House at our home from 5 - 8 pm. All of Jim's friends, neighbors and co-workers are invited to stop by, share memories, and view photos. Refreshments will be served.
As many of you may know, Jim passed away with no health insurance, no life insurance and no money in the bank. In lieu of flowers, donations towards Jim's final arrangements are greatly appreciated. Thank you very much to those who have already contributed.
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After having delivered the announcement of Jim's obit and upcoming memorials, I hate to gripe; but I need to vent about another of the many small "bad" things that happened during this crisis (the snow storm, my eye all puffed up, the TV and stereo both on the fritz while Jim was home), and that just seem to keep on happening lately.
First, I am a little miffed that the obituary was printed on Sunday rather than Wednesday as I had been told. Since it had been several weeks since Jim passed, I have been trying to keep everyone informed as to when to look for the obit to be published. I had to make a special trip to the Canton Repository Newspaper so get a copy of Sunday's paper so I could even see if for myself.
My second issue is that a very important part of the obituary was NOT included, so that the lines for Heritage Cremation and the newspaper could be added. My lines, that were cut, read "In lieu of flowers, gifts can be sent to help with final arrangement expenses to the Pollnow residence (1608 48th St. NW Canton, OH 44709). For more information contact Michael Bivens at 330-284-8111". I hate to sound like I'm greedy; but that's the part that I really needed to have printed.
Because of these issues, I've made a decision. As of the present, I have only collected $50 more in contributions. My plan had been to pay off the remaining debt myself out of my monthly SS check, if I didn't receive any more money, instead of making a payment towards the house. ($370 out of my $500 check wouldn't leave much to pay the house or any of the utilities that are 2-months behind) I had been hoping that the obituary notice would bring in enough donations; but now I cannot be assured that anyone else will donate.
So, I have Jim's ashes, his death certificate, and the memorials will be held this Sunday. I will have done my service to Jim and it will be time to start truly thinking about myself and how I am going to get along. Instead of paying off the cremation bill (any donations will, of course, still be directed toward paying off that bill though), I need to keep the roof over my head (especially since the car is sure to be repossessed soon), and my money is going to the house payment.
I have an appointment on Thurs. with welfare to get a retro-active (90 days) medical card for Jim. The hospital social worker helped set this up, so it should cover the hospital bill, and take that off the debt against the house. Hopefully, I'll be able to use the card to also pay off most (but probably not all) of the other medical debts Jim incurred (radiology and gastro tests and doctor bills, the cancer and kidney doctors, home health care, hospice, the 4 ambulance rides, etc). Afterwards, there will still probably be $40K out against the house; but if I do have to probate the house and sell it, I won't lose everything from the sale.
The rest of this week is fairly busy for me. Along with the welfare appointment, I have the strange chore of planning a party for Sunday evening. I've always attended funerals and calling hours at a funeral home; but have never been to a wake. However, I find it appealing and believe Jim would have approved of having friends, family, neighbors and co-workers over to look through the pictures of his life, remember the good times we all had together, and grill out hotdogs on the patio by his pool.
However, I still feel apprehension about the memorial which we'll hold at Randy's grave early Sunday afternoon. As with Randy's funeral, I dread the finality of the events on the 25th. I've spent months taking care of Jim through so much, and years of gladly catering to my partner's wants and needs. It's not because I'm afraid to move on in my "new" life; but because I'm sad that I must finally leave Jim behind.
In no disrespect to Jim's memory though, I somehow survived this before and lived to tell about it. I'm hoping and planning on surviving once again, and continuing to tell my story - thanks to a little help from my friends.
I know I've said it before, but I appreciate all the support I've received in this thread. There were days when your advice and words of encouragement where all that kept me from sinking under the weight of it all. Even though we were both scared at the start, we had held high hopes that treatment would work. When I lost Randy there weren't any options and no hope, so we were resigned to the inevitable. This was so hard to live through, as each day our hopes sunk lower and lower, until Jim and I had both lost all hope. I also appreciate how many of you have followed along this tale, thinking back to your own dark experiences of losing a loved one. I never intended on bringing up that kind of sorrow that we've learned to keep at bay; but then again we never planned on Jim passing away like this either.
I'll only have one more update for this thread now - after the memorials on Sunday. After that, if you're ever interested, you can always check out what's going on in my life at my blog, http://reigningpages.com/leatherman. Oh I'll still be posting around here; but the next thread I start will be about just me. :(
mikie
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MIkie
I hope everything goes well for the memorial service/reception/gathering.
Joel
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We all love you, Mikie, and will be thinking of you, Jim and Randy this weekend.
:)
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May 25th, not a date I'll ever easily forgot as I said goodbye to a second partner. On one hand, I feel so very lucky to have been in such love twice in my life; but on the other hand, I feel "cheated" that I had such a short time with each of the men that I dearly loved. I never dreamed when I first started this thread about spinning out in the car in the snow how much my life would spin out of my control over these last few months and that I would be closing out this thread (I'm sorry it's a long post; but you know how much I can ramble on) with the story of Jim's memorials rather than of his recovery.
After weeks of cleaning and preparing, weeping and planning, I held a memorial service for Jim and then opened his house to friends and friends so that we could all share memories and stories of Jim in a celebration of his life. Though nothing ever goes off quite as planned, both events went well, with only minor hitches.
Over a dozen friends and members of my OhioFamily arrived in several cars and a van for the service. Though the children had been too young, all the adults had been with me at this site 14 years ago, as we laid Randy to rest. None of them had been back to the site since that sad day, and several minutes were spent as they reminisced upon seeing Randy's headstone, with the carved cocker spaniel silhouette, for the first time.
After greeting them all and thanking them for attending, I explained how we came to be at this grave site again. I told them how both Jim and I had thought about the future those first nights in the hospital, and how Jim wanted to have his ashes left with Randy. I described speaking with Randy's mom (my mom-in-law) and how we both believed that Randy would approve of my two partners sharing a final resting place. Then I gave a eulogy honoring both men and saying goodbye to my Jim.
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the eulogy
Fourteen years ago, many of you, my dearest friends and family, stood with me on this spot as we said a final goodbye to my beloved Randy. Leaving this grave and leaving Randy behind, after I had taken care of him through so much, was the hardest thing I ever had to do. On that day, my heart broke. Where once I had been a whole person being Randy's "other half", I departed here only half a person.
For many years afterwards, I remained that "half a person" - depressed and sick. Throughout those years, you, my loved ones, stood by me and gave me the strength, courage, and hope to continue living. One person especially included me in all his activities, to give me back a semblance of being a whole person - that was Jim. No matter who he was dating, nor how much they were bothered by our friendship, Jim made sure I got out of my house, out of my depression, and helped me get back to life. Jim was my best friend for 20 yrs. He stood by me through losing Randy, having pneumonia twice, losing 7 of my cocker spaniels, and all the bad times I had with the meds.
I know for many years, many of you already thought of Jim and I as a couple, as he practically lived at my house on 14th St, often leaving his cats lonely, while he stayed with me and the dogz. After losing Randy, I never imagined I'd be in love again, so it took a while for me to realize that that was what had happened.
When I did realize I was in love again, it took me a little longer to make a commitment to that love. Not because I didn't care deeply for Jim; but because I was afraid that one day, he would be standing my grave, as heart-broken as I was standing here that day 14 years ago at Randy's graveside. But once again, you my dearest friends, gave me courage and hope. Many of you told me that regardless of whether Jim and I were "just friends" or "partners", he (as well as all of you) would be just as devastated by my passing. You told me that I shouldn't miss this opportunity to love and be loved by such a wonderful man. It took me four years; but on the trip that Jim and I took to NC to spend Christmas with my family (the year we made all those gingerbread houses), I finally told Jim how much I loved him and I wanted to only be with him - no matter what the end would be like. Officially, Dec 18, 2004, became our anniversary, and though we've really been together for 7 yrs, this past Christmas we celebrated our "third" anniversary.
As you know, making that commitment, really turned my life around. Trying to forestall my visions of Jim's sadness at losing me, I began to stay compliant to my meds. Within a short amount of time, for the first time in 10 years of being on and off meds, I finally reached an undetectable viral load. Ever since I made that commitment to Jim and my meds, my counts (though they may have blipped here and there) have been holding stable. Being with Jim, and finally being healthier, allowed me to finally think and plan for a future longer than three months. Jim and I spent our years together enjoying every minute we could. Going to the amusement parks every summer - even as we got older; hiking through Nelson Ledges State Park together or with friends; taking our "moms" on mystery trips; surprising my mom for Christmas after telling her the "Amish buggy accident" story; having "jim and mikie's excellent adventures" to museums, movies, parks and zoos.
However, never in the thoughts of my future with Jim, did I ever imagine the recent turn of events. Instead of Jim mourning the loss of me, as I feared would happen, I stand here today mourning my loss of Jim.
The last three months of his life were something no one should have to endure. Being nearly starved to death (by accident) in the hospital before coming home that weekend; being left alone, in a dark corner of the ER for 8 hrs; being moved from room to room till he was literally driven mad; being told over and over to wait "just a few more days" for a turn-around, which never came. No one should have to endure such atrocities. Some of you may have thought he "gave up" too soon at the end; but I dare you to experience what he did and not lose all hope yourself. I am sure that Jim and I made the right decision in bringing him home when we did. By the end, he had pneumonia and the fever had returned, more than likely meaning that the chemo hadn't worked and the tumors were still growing. I am certain that coming home when he did saved him another month of hell in the hospital before passing away anyway.
Now, fourteen years later, we gather here again to pay our respects to another honest, out-going, wonderful man whom I loved dearly. I tried my best to take care of Jim through so very much before he passed away; but there's nothing more I can do for him in this life after today's gatherings here and back at his house. After scattering his ashes here in a few minutes, I must leave him to Randy's care now.
I'm not certain what happens after someone dies; but I know what I'd like to think. I think when Jim left this life, that along with Randy, Rekky, Nami, and Showie (Jim's cats) were there to greet him. I take comfort in also believing that Jim has finally been re-united with his parents, who passed away so many years ago leaving him alone and who he called out for during his last days at home.
Today, my mended heart is broken again. Where once I had become a "whole" person again by being Jim's "other half", now I will leave this gravesite once again as only "half" a person.
Goodbye Jim. I love you and will always miss you.
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Following my eulogy, several people spoke of Jim - stories of his character, memorable events, and what he meant to each of the people. Afterwards, I scattered Jim's ashes across Randy's grave, and tearful goodbyes were said as the site was covered in dozens of red and white carnations.
I must thank my Mom for the idea of the flowers and balloons. While it was sad tossing down our flowers, a sense of release was felt as we set the balloons, and Jim's spirit, free to drift on the winds.
As the balloons finally drifted out of sight, everyone began to head back to their vehicles for the drive back to Jim's house. I lingered behind and spent just a few more moments thinking about my two men, how much I loved them, and how much I miss them. I had practiced the eulogy several times and had been able to deliver it with only a few sniffles and "hitches" in my voice. However, as I turned and walked away leaving Jim behind, I couldn't contain the grief any longer, and the tears flowed hard and heavy.
Back at my house (no longer "our" house), we quickly began preparations for the Open House. I had already set up displays throughout the house the day before, but we needed to prep the eating area (patio and kitchen) and the food. Although the pool has been uncovered and we were finally having Spring-time temps, the weather was still no where near enough for a pool party (and the water is cold and still quite green since I haven't gotten any chemicals yet). However, outside on the patio, I hosted one of Jim's famous cookouts just like he'd throw for a party. In honor to Jim, the food consisted of many of things we normally served at one of the pool parties - grilled hot dogs, chips, dips, Jezebel sauce and crackers (something Jim had had me make for the nurses along with a batch of my muffins), sweet-n-sour meatballs (one of Mary's specialties), our OhioMom's grilled cheesy potatoes (always a favorite!), cupcakes (decorated with fancy sprinkles that Jim had bought our OhioMom over the last years), and my OhioSis' mandarin orange cake.
The displays scattered throughout the house all became focal points for people to stop, look and talk about Jim. In the living room, after signing the Guest Registry, people were able to look through Jim's baby and childhood photos, along with several albums of pictures from the trips he took to Jamaica, Disney, Key West and Niagara Falls. Also displayed with items throughout his life including his bronzed baby shoes, and the afghan he was given in the hospital and brought home with him.
Showcased on the mantle were various items - several stuffed and ceramic cats that Jim had received as gifts, a letter about Jim one of his long-time friends sent (she lives in Kentucky and was unable to attend in person, and sent her remembrances so that she could attend in spirit), the luminere that we were given by a friend from aidsmeds.com (the one we lit every night while Jim was in the hospital and at home), and the box that had contained his ashes.
On the hearth, I set up a display about Jim's parents. Having had Jim later in life (his mother was 35 when he was born), his parents, Arthur and Dorothy, doted on their only child - as can be seen by the numerous slides and photos taken documenting nearly every month of Jim's childhood for many, many years. Jim's father passed away in 1971 at the age of 45 from a heart attack; followed just 11 years later by Jim's mother passing away at 56 from cancer. Jim's only remaining grandparent (his maternal grandmother) passed away just 6 months later, leaving Jim alone without a family in his early twenties.
In the memorabilia scattered throughout the house, were the effects of not only his parents (love letters, poems, photos, pay stubs) but also of his grandparents (a medal from the World War, presidential letters from Truman, Kennedy and Nixon thanking his father and grandfather for their service in the military, diplomas from high school and college for his parents and grandparents, even an old army helmet and the burial flag of his grandfather)
Jim was a avid Star Trek fan and I displayed a whole room filled with Trek items. These collectibles range from a "captain's uniform" (especially made for Jim when he attended the 30th anniversary Trek convention and ended up with several interview clips in the movie "Trekkies"), to Star Trek cups and saucers, to autographed pictures, to computer games, to Trek suit ties, to well over 300 Trek books, even to Star Trek Christmas ornaments.
In our Computer Room, I exhibited the awards Jim won throughout the years selling cars. There are over half a dozen plaques and awards extolling Jim as "Salesman of the Month" or year. Along with a display of work shirts from the various dealerships in which he worked, I included autographed racing pictures, and mementoes of Jim's love affair with cars and planes.
On the TV and the computer monitors scattered throughout the house, I set slideshows running. Jim's computer displayed the pictures that he has taken over the last few years; my computer showed my favorite pictures of Jim; the living room computer displayed pictures of Jim's cats; and the DVD player cycled through, on the TV, several hundred pictures that I had taken of Jim's life. (from photos taken from a video I have of both Jim and Randy bungee cord jumping in 1991 to Jim sitting at his work desk this past January 2008)
I was both sad and glad as I narrated through our "adventures" (which included many of the guests at our house) over the years. Mostly though I was glad to be able to share happy memories of Jim with the people who cared about him. Along with members of our OhioFamily, neighbors and old co-workers were also over to help celebrate Jim's life. I'm sure the 30 people that were in the house (and on the patio) at one time were the most people that had ever been in Jim's house at the same time!
All-in-all I think I did Jim proud. Several of our guests complimented me on the beautiful gravesite service and have decided that they would prefer similar arrangements at their passing rather than a regular funeral home service. I just know that I did the best I could with good advice from family and friends, limited resources, and a broken heart.
Thank you all so much for the support you gave me through this crisis. Your prayers, thoughts, enouragement, advice, and donations helped more than I say. Over the next few days, I still have to send out Thank You cards to all of you who sent gifts, along with re-arranging my house as I pack away Jim's belongings and move in a roommate. After that I plan to spend a few days doing nothing but resting. I have been going non-stop since the middle of February, and this sick, 46 year old, two-time widower has used up all his strength (physical and emotional) and is exhausted.
best wishes and good health to you all!
a very sad leatherman,
mikie
ps more pictures of the events are online now at my regular blog, http://reigningpages.com/leatherman (Week Five of May)
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Mikie, what a beautiful eulogy. The whole thing sounds wonderful (service, after at your home). Peace to you.
Luv,
Betty
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A very lovely tribute indeed Mikie. I know he would have been proud.
Love & hugs,
Alan
PS -- sometime in the future when your emotional 'wounds' are not so fresh, I hope you will consider posting something for both Randy and Jim in our "In Memoriam" Section of the forums.
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Mikie,
Thank you for sharing the details of this very special day. It sounds like you did a beautiful job of remembering Jim. I hope you can get some much needed rest now and take good care of yourself.
Peace,
JD
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Mikie,
I'm sorry I haven't posted my thoughts for you in the last few weeks but I have been off the board for a while.
It pains me to read of Jim's death and to know of your own suffering through this.
My late condolences to you.
with love,
Mark
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Mikie..that was a beautiful and loving way to say goodbye to a dear departed..I, like many of the people on this forum, have been to many funerals and for me this would have been the most touching and sweet way to say goodbye to a friend, lover, neighbor or just a good person......you have certainly displayed the spirit of survival that this bug has brought to many of us...I would hope for half as much consideration when it is my time to go...
Nick
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Mikie -- thanks for posting those heartfelt words.
xoxo
Peter
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Dear Mikie. I'm sorry you didn't have more time with them. I can only imagine the unforgettable love and memories you guys created together. Many hugs to you.
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Dear Mikie, I have kept you in my thoughts, I feel honored that you have shared your
story and your feelings here, I wish I were as strong and as loving as you.
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Although it's been a while since I posted in this thread (at least 60 days according to the warning), I thought it was appropriate to make one more entry. (I'm cross-posting this into my newer thread "treadimg water" too)
Earlier this month, on July 9th, I was slightly upset with myself as I talked online with Randy's mom late that evening. It was 10:30pm and it wasn't until she IMed me that I remembered that that day would have been Randy's birthday. My Randy would have been 45 and we would have been together 23, if things would have been different.
I don't beat myself up too much for not remembering his bday though. It's been 14 yrs, and his birthday is less of a day for me to remember - I wasn't there at his delivery like his mom was ;) - than dates like our anniversary (jan 15th) or the day he passed away (may 25th). For the first decade after his death, I always remembered this date; but during my relationship with Jim over the last four yrs, I found that I was "forgetting" Randy's bday and not upset on that date like I had been for so many years.
However, waking up this morning (july 29th), the first thought in my head was the same thought I went to bed with - today would have been Jim's 52nd birthday, if he hadn't passed away 89 days ago. :'(
God, how I still miss him!
:'( mikie
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Oh Mikie,
I can feel your pain.
It is so unfair to loose two lovers in a life time....if only i could do something to ease your pain...
Lnow that Jim is in our heart.... forevere.
Sending you warm hugs and love
Hermie
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I'm sorry to bring up this thread after so long; but . . .
It's been a tough month or two for me recently. I had been reading my blog, from last year, one entry a day starting from when Jim went into the hospital. Unfortunately, as it came up on my birthday as when we received both of Jim's diagnoses, I just couldn't take it any more. I had to quit reading those old updates and took to a ton of house and yard work to distract myself.
But it's hard not to remember all those terrible times from last year. As I sit here writing this on the morning of the 23rd, I know that it was one year ago today that I took Jim back to his home for the final time. In just nine short days, a year will have passed since Jim took his final breaths and left.
April has only had a few nice days, so when the Spring showers moved back in the area, I had to move back inside the house and tackle the last few indoor projects. After moving into my new computer room, I still had a few boxes of miscellaneous stuff to sort through, and if that's not a chore for a rainy day, then I don't know what is. LOL Unfortunately, unsorted boxes usually contain emotional time bombs just waiting to explode in my face.
As I sorted out notes of computer projects I have in mind, old receipts, old bills, I was disturbed to find a handful of cards. Somehow in the confusion of my life last year, a handful of "thank you" cards (to those who contributed to Jim's cremation fund) obviously got waylaid and never mailed. I feel just awful that those cards didn't get out to those people who so generously helped me last year when I didn't even have the money for Jim's final arrangements.
Trying to do the honorable thing, I added a short note about the "delay" and mailed out those cards today - nearly a year late but the sentiment is still unchanged. It was only through the help of those people that I was able to pay enough of the bill to get Jim's ashes back and not lose him to the whims of fate and time. Hopefully, everyone that sent a contribution received (or will receive soon) their thank you card from me.
on a different subject . . .
Some of you may remember that I had stopped smoking for 110 days after using Chantix, until everything went to hell in a hand basket.
Upon returning home from a road trip in a blizzard, Jim was still ill, was admitted to the hospital, diagnosed with AIDS and non-Hodgkins lymphoma, and died 69 days later. Unfortunate to say, I took up smoking again on that dangerous trip home just before Jim went into the hospital and I was up to 3 packs a day by the time he died. Sadly, everything was quite a mess back then.
However, I got another script for Chantix as a Christmas present for myself with money from the sale of some of Jim's belongings (since neither medicare nor medicaid would pay for it). I took it for only 4 wks once again and timed it out so by my 47th bday on Mar 14th, I had quit smoking for 47 days. WooHoo!
At the end of this month I'll mark 90 days without a cigarette. The following day will be the one year anniversary of Jim's passing. Then at the next appt with my ID doc in the middle of May, I will have come full circle and will be back to celebrating 110 days without smoking.
There are days now (too many really. sigh) when, after losing Jim, my second long-term partner, that I'm quite adrift and lost; so it really means a great deal to me personally to be able to say that though everything in my life changed without any of my approval/input/consensus, I did have some small bit of control over one thing and have regained my status as an ex-smoker.
I still miss Jim every day. Everything I see, the arrangment of the furniture, the walls in this new house, the new front and back yards, only reminds me of what I've lost and how everything has changed.
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Thank you for bringing this thread back up because it is a phenomenal and heart-wrenching read.
Just want to extend to you my deepest sympathies for what you went and continue to go through, and also to thank you for your willingness to be as open and forthright as you have been throughout not only this thread, but your life as I have read it.
What you have been through is far too much for a human being of any caliber. I commend you for your supreme strength and honesty. You are a definite survivor.
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Hi Mike: I'm new here had haven't read all your stories but reading this one my heart really goes out to you. I have had a few tough years but nothing like yours. The last 7 months for me has been bad but 2003 was a total disaster. My dad had been hospitalized for fluid on the lungs November 14th 2002. That cleared up but he kept on sinking further. January 13th 2003 while trying to remove a mucus plug in his lung he had to be resuscitated. They moved him to I.C.U. When my mom and I arrived the nurse told us at the door we had 2 minutes as she was calling another code blue. We went to him and told him to stick around and we would be back to see him in a few minutes. After an hour and a half in the waiting room they finally said we could see him. We just got into the hall way and they paged a code blue in I.C.U.. I told mom that it couldn't possibly be dad again. Wrong. We got to his room and there must have been 14 people working on the poor guy. He survived and spent the next 42 days on a respirator. I always wanted him to be able to speak again. I was dieing to ask him what St. Peter said to him when he showed up at the pearly gates for the third time within 4 hours.
While in I.C.U.I had to have two of the hardest talks with him that I have ever had to do in my life. The first was after he was quite agitated. He had something to say and couldn't because of the tubes in his throat. Over the week or so I tried everything to see what he wanted. He was to weak to write on the pad what he wanted. I made alphabit cards so he could it spell out. Didn't work. I spoke with a nurse who brought up a picture board of common complaints. They use it for kids and people who don't speak English. It had pictures depicting hungry, cold, warm, etc. All he had to do was point to the right picture. The one he wanted was not there. A week later they had tied him down as he was trying to rip out his I.V. and respirator tubes. After sitting with him till 2am one night I finally figured out what he wanted. I never thought that with 8 I.V. bags hanging over his head and tubes down his throat, the man wanted to go home. I hugged him and cried like a baby. I had to explain that he had to get lots better before we could even think of taking him home.
A week later I had to have another chat with him. The doctors couldn't find any reason why he should not be getting better or any worse (i.e passing away). I had to tell him that he shouldn't be hanging on just because of Mom and us kids. We we doing good and if he was hanging on just because of us he shouldn't. Man that was a tough conversation. A few days later they moved him from I.C.U to a ward and he passed away the next morning.
At the same time my mothers health was not great. 2 years prior to hospitalizing dad she went in for an Angiogram and they would not let her off the stretcher. Her arteries were clogged so bad they wanted to do a quad bypass immediately. They could only do a triple as the fourth was to badly deteriorated. A while later she went blind in one eye. Three months after dads funeral mom had a cateract removed from her good eye.
In August my brother in-laws grandmother died. She was a good friend on mine. In October mom was not well and we put her in hospital. She died 3 days later. December I lost another good friend. Then to top it all off my mothers brother and my favorite uncle died a year to the day after my dad.
The one thing that kept me going that year was a cartoon from the paper. One day I just happened to pick up a paper and it was at the commics page. There was a Ziggy comic where Ziggy was having a conversation with god.
Basically he said: Dear God: It's me Ziggy, This sure has been a rough year for me. I know that you you only give us an many trials and tribulations as you know that we can handle but is quite OK if you don't have quite as much faith in me next year.
My feeling exactly. I laughed and cried at the same time. I have that comic beside my parents urn as well as the Foot prints in the sand poem. If you don't know that poem look it up on the internet as it's quite moving.
If / when I ever get really sick I hope that I can face it with the courage, strength, attitude and will power that you have shown through your life.
Hoping everything turns out OK. Best of luck.