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Author Topic: spinning wheels  (Read 72033 times)

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Offline BT65

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Re: spinning wheels
« Reply #200 on: April 16, 2008, 09:44:46 PM »
Thinking of you and Jim still.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Online leatherman

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Re: spinning wheels
« Reply #201 on: April 16, 2008, 10:36:37 PM »
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.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Online leatherman

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Re: spinning wheels
« Reply #202 on: April 16, 2008, 11:12:50 PM »
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
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline Roie

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Re: spinning wheels
« Reply #203 on: April 17, 2008, 01:47:13 AM »
Quote
The muffins MUST have done the trick! ROFL

Please can I have the recipe of these famous muffins. I really really need them.

Cruise on down the High Way

"When people who are not ready jump in, things can go horribly wrong. For most of us, there is always time to take a deep breath, consider one's options and make a careful, sound decision based on clinical fact, not emotion."
MtD

Offline AndyArrow

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Re: spinning wheels
« Reply #204 on: April 17, 2008, 03:16:29 AM »
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
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline bear60

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Re: spinning wheels
« Reply #205 on: April 17, 2008, 02:45:34 PM »
"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
Poz Bear Type in Philadelphia

Online leatherman

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Re: spinning wheels
« Reply #206 on: April 17, 2008, 11:13:28 PM »
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
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline AlanBama

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Re: spinning wheels
« Reply #207 on: April 17, 2008, 11:20:53 PM »
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  :-*
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline BT65

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Re: spinning wheels
« Reply #208 on: April 18, 2008, 07:59:23 AM »
Mikie, here's hoping for more good things to happen.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bear60

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Re: spinning wheels
« Reply #209 on: April 18, 2008, 09:22:15 AM »
Mikie
What a difference a good night sleep makes! I hope things improve for you.
Joel
Poz Bear Type in Philadelphia

Offline Ann

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Re: spinning wheels
« Reply #210 on: April 18, 2008, 06:36:52 PM »
~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
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Online leatherman

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Re: spinning wheels
« Reply #211 on: April 18, 2008, 11:50:36 PM »
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
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Online leatherman

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Re: spinning wheels
« Reply #212 on: April 19, 2008, 12:06:05 AM »
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
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Online leatherman

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Re: spinning wheels
« Reply #213 on: April 19, 2008, 02:53:31 PM »
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.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline bear60

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Re: spinning wheels
« Reply #214 on: April 19, 2008, 03:03:38 PM »
"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.
Poz Bear Type in Philadelphia

Offline dgr20002

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Re: spinning wheels
« Reply #215 on: April 19, 2008, 03:06:26 PM »
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

Offline Assurbanipal

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Re: spinning wheels
« Reply #216 on: April 19, 2008, 03:27:52 PM »
Wishing you peace and strength

A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline Wessel

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Re: spinning wheels
« Reply #217 on: April 19, 2008, 03:31:53 PM »
I am new to the thread but i have been with you all the time..what can i say..i pray for you both.

Offline Ann

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Re: spinning wheels
« Reply #218 on: April 19, 2008, 06:02:20 PM »
(((((Mike))))))

And because I know he needs one too...

((((((Leatherman))))))

Wishing you strength,
Ann
xxx


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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Miss Philicia

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Re: spinning wheels
« Reply #219 on: April 19, 2008, 06:07:06 PM »
Mikie, you are both in my thoughts right now.
"Iíve slept with enough men to know that Iím not gay"

Offline Longislander

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Re: spinning wheels
« Reply #220 on: April 19, 2008, 06:10:42 PM »
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
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline Snowangel

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Re: spinning wheels
« Reply #221 on: April 19, 2008, 09:19:25 PM »
Mikie,
I'll be praying for you both.
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline AlanBama

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Re: spinning wheels
« Reply #222 on: April 19, 2008, 09:27:28 PM »
Keeping you in my prayers --

love & hugs,

Alan   :'(
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Online leatherman

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Re: spinning wheels
« Reply #223 on: April 19, 2008, 11:45:44 PM »
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.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Online leatherman

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Re: spinning wheels
« Reply #224 on: April 20, 2008, 12:22:44 AM »
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.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline AndyArrow

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Re: spinning wheels
« Reply #225 on: April 20, 2008, 12:38:24 AM »
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
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Online leatherman

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Re: spinning wheels
« Reply #226 on: April 20, 2008, 02:49:45 PM »
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)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline Longislander

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Re: spinning wheels
« Reply #227 on: April 20, 2008, 03:33:39 PM »
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
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline BT65

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Re: spinning wheels
« Reply #228 on: April 20, 2008, 05:01:37 PM »
Mikie, I am so, so sorry to hear this. 

I'm hoping for peace for you and Jim.
   Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline heartforyou

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Re: spinning wheels
« Reply #229 on: April 20, 2008, 06:19:19 PM »
I am just shattered......

Why Mikie???????


Love

Hermie
Diagnosed in 1987 and still kicking
Viread, Kivexa (Epzicom),Viramune once daily

Happiness is the freedom of breathing fresh air every day.

Offline Assurbanipal

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Re: spinning wheels
« Reply #230 on: April 20, 2008, 08:07:27 PM »
Mikie

I am sorry for your news.  I wish you and Jim strength and love to carry through tomorrow.

Hugs
A
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline AlanBama

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Re: spinning wheels
« Reply #231 on: April 20, 2008, 08:47:34 PM »
My heart goes out to you Mikie.

My prayer is for strength and courage for you both, for mercy and for peace.

love,

Alan  :'(
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Online leatherman

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Re: spinning wheels
« Reply #232 on: April 20, 2008, 11:06:06 PM »
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.

-----------------------
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
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Online leatherman

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Re: spinning wheels
« Reply #233 on: April 21, 2008, 11:06:10 AM »
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
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline bear60

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Re: spinning wheels
« Reply #234 on: April 21, 2008, 11:12:36 AM »
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
Poz Bear Type in Philadelphia

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Re: spinning wheels
« Reply #235 on: April 21, 2008, 12:23:59 PM »
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
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline bear60

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Re: spinning wheels
« Reply #236 on: April 21, 2008, 01:44:40 PM »
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.
Poz Bear Type in Philadelphia

Offline BT65

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Re: spinning wheels
« Reply #237 on: April 21, 2008, 02:30:31 PM »
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.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline JDPoz

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Re: spinning wheels
« Reply #238 on: April 21, 2008, 02:39:40 PM »
Dear Mikie,
Still sending you good energy and my best wishes.  Wishing there was more I could do...
JD

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Re: spinning wheels
« Reply #239 on: April 21, 2008, 04:52:12 PM »
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.  ::)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline dolcevita08

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Re: spinning wheels
« Reply #240 on: April 21, 2008, 07:09:19 PM »
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

Dance as though no one is watching. Love as though you have never been hurt before. Sing as though no one can hear you. Live as though heaven is on earth.

Online leatherman

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Re: spinning wheels
« Reply #241 on: April 22, 2008, 02:13:41 AM »
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.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline Ann

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Re: spinning wheels
« Reply #242 on: April 22, 2008, 05:22:06 AM »
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
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Assurbanipal

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Re: spinning wheels
« Reply #243 on: April 22, 2008, 06:36:03 AM »
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
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline BT65

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Re: spinning wheels
« Reply #244 on: April 22, 2008, 07:59:17 AM »
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
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline bear60

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Re: spinning wheels
« Reply #245 on: April 22, 2008, 08:47:43 AM »
Mikie
This seems so .....final.
 I am sending you a big (((((HUG)))))).
Joel
Poz Bear Type in Philadelphia

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Re: spinning wheels
« Reply #246 on: April 22, 2008, 02:21:39 PM »
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  :'(
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline SoSadTooBad

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Re: spinning wheels
« Reply #247 on: April 22, 2008, 07:50:02 PM »
praying for you both - not sure what else to do.


Offline Dragonette

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Re: spinning wheels
« Reply #248 on: April 23, 2008, 05:00:49 AM »
 :'( 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))))
« Last Edit: April 23, 2008, 05:04:00 AM by Dragonette »
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline joemutt

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Re: spinning wheels
« Reply #249 on: April 23, 2008, 06:05:52 AM »
Mikie and Jim, I am thinking of you.

 


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