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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: AlanBama on August 14, 2013, 09:35:29 am

Title: Just checking in
Post by: AlanBama on August 14, 2013, 09:35:29 am
Hello my friends and fellow LTSers!  First of all, let me apologize for being mostly absent from the forums for quite awhile.  It has taken me a long time to even get up the 'will' to try to write a post, because things are so weird for me these days.  I have been experiencing mental issues, as in REALLY POOR MEMORY.  Doctors visits have all run together in a never-ending blur....I try to write everything down now, and even that doesn't always work. 

Quite a few months back, I started experiencing shortness of breath, upon little or no exertion.  Just walking across the room can do it for me, to say nothing of climbing a flight of stairs.  I was referred to a pulmonologist, who put me through a barrage of testing; his conclusion was "mitochondrial myopathy".  It's mostly one of those things that "oh well, you have it but there's not a lot we can do about it".  He referred me to a neurologist for further testing.  Upon my initial exam with this guy, he decided that that was not my biggest concern, that I had "other things" that needed more immediate attention.  He has put me through a barrage of tests...the needles in the muscles thing (maybe EMG? does that sound right?) and most recently "evoked potential" which is one of the weirdest tests I have ever had in my 25+ yrs of dealing with hiv.  Also, I had a MRI of the brain and spine.   I have a feeling we are playing "go fish" with all this medical testing...just cast out a line, see what you reel in.  So far, they aren't really finding anything (that they are telling me about).  Trying to get care in today's world of medicine is a trip in itself.  I have seen the quality of medical care go from top notch (80's) to bottom of the charts (2013).  For example, I had this MRI and evoked potential a few weeks ago; my next appointment (to find out the results) is not until Nov. 5th.   I have a feeling this guy is going to say "sir, we've discovered that you have pretty severe peripheral neuropathy, and we can put you on neurontin/gabapentin if you'd like to try that".   I told them DAY ONE that I have had PN since 1992, and no, I did not want the neurontin, I don't like it.  Before the testing, he did mumble something about being concerned that my blood/brain barrier was not being crossed with HAART therapy....

I was so glad to receive the latest POZ magazine, and see that it was about Longtime Survivors!  In one article, a guy expressed my feelings so well:  "it's like being a Martian, living on Earth; except no one knows you are from Mars".  I look forward to reading the whole magazine.

I was recently so blessed to get to see Jan and her friend Jen again; we have not been together since 2007 in San Francisco.  We had a great time at JG's house, and I am also very thankful for him and his friendship.  We serve on a Patient Advisory Board together at our clinic.

I'm going to try to not be such a "stranger" and check in more often.  Some days, my brain is firing on all cylinders...some days, not so much so. 

Much love and appreciation to all of you,
Alan
Title: Re: Just checking in
Post by: leatherman on August 14, 2013, 11:29:44 am
(http://nowherewithyou.files.wordpress.com/2010/08/tin-man.jpg)
Glad to read you're back; sorry to hear about such troubles.
What's that old saying, "if it's not one thing, it's another" LOL
Hang in there!

by the way, we just passed the Tin Man's b-day. Jack Haley's was born on Aug 10, 1898 ;)
Title: Re: Just checking in
Post by: BT65 on August 14, 2013, 06:02:36 pm
Alan, I'm typing this with pain jolting through my right foot, so I sympathize with the PN issues.  I'm so sorry you're going through all that bullshit.  I agree, medical care has declined.  One of my clients has growing KS.  He was seeing a local infectious disease doctor.  The doctor kept telling him "we'll just watch it."  WTF?  It's spreading!  So, I send for his labs, get them, and find out he's had a detectable and growing viral load for a year!  WTF is this doctor doing?  Luckily I was able to go to his primary care doctor's with him and demanded a second opinion.  He saw an oncologist and is on some liquid chemo med.  And also got him into see my doctor for the HIV issues.

So I agree about the medical care.  It has really gone down.  I cannot imagine the frustration you're going through, wanting to know what's going on, and not being told squat.  I hope you're able to keep your sanity through all this!  I believe you're pretty resilient, though I know we all have our breaking points.  Hang in there, pm me if you want to and I'll send you my number.  Luv ya!  Glad to see you posting.
Title: Re: Just checking in
Post by: Jeff G on August 14, 2013, 06:37:37 pm
Hi Allen , I sympathize with you and know how you struggle . You are always so gracious and smiling when I see you Layne it could be easy to forget how much we share in common both past and present .

I think many of us LTS folks walk the earth without most mortals realizing what it cost us to be here , what it took .

I'm very happy to call you my friend and its my hope that you join us here more often . 
Title: Re: Just checking in
Post by: Theyer on August 16, 2013, 06:46:14 am
Hi Alan,

Your post touched a nerve. The part about the blur off tests.Last week my Pain control Dr. suggested a referral to the Neurologist because off the increasing problems I have with balance.

I declined, as I am also in the middle off dental work and know how much it takes out off me more than one medical appointment a week. So as the Pain Control Dr agreed it was highly unlikely that the neurologist findings would change much for me other than possably giving more info for us all . I will wait until the Mouth work is finished and hope that I don,t break anything with my at least weekly falls.

Its alarming to read all your comments about the decline in Care. And Bt your clients experience Falls into the catergory that I feel is emerging ,  that with combo treatment illness its a thing off the Past , the Pills will keep the immune system strong and that will fight off what may emerge. This confuses me as I have had all my serious illness with a negative viral load .

In the UK anyone receiving benefits is under ever increasing scrutiny , I am awaiting along with everyone else who receive the benefit a complete reassessment. This reassessment carried out by a company that won the contact Has a 40% fail rate. And a huge overturn figure on appeal . Scandals have emerged about there decisions and still our Government push through like a blind bulldozer, It feels so much less secure now to 5 even 10 years ago. Then I had been awarded benefits "for life" and could put all my attention into getting and staying well, now We wait for the ax to drop and our incomes stopped until the appeal process finishes . A comedian on the radio said that the Disability assessment panel had been renamed Lourdes , you went in ill came out totally cured.

Glad you intend to hang out here more see what your post has generated already.

BTW , was the weirdest test the one where your are strapped standing , monitor wires a spaghetti from you to bleeping machines , and they wait to see if you faint within an hour?

The very best to you
Michael
Title: Re: Just checking in
Post by: wolfter on August 16, 2013, 10:27:05 am
Unfortunately, many of us understand completely.  Our generation will always be the guinea pigs for the progression of this virus. 

hugs
Wolfie
Title: Re: Just checking in
Post by: aztecan on August 16, 2013, 10:50:15 pm
Alan, my dear friend, I understand how you feel. I think we LTSers have all felt that way at one time or another.

You were much in my thoughts this past week, as we at AMG in Chicago reminisced about the earlier ones. Your presence in San Francisco was well remembered and spoken of fondly.

I am so sorry you are having so many difficulties. I agree, we, the guinea pigs of HIV, seem to be overlooked a lot.

I will be keeping you in my thoughts and prayers. I also will send positive energy to you as I can.

HUGS,

Mark
Title: Re: Just checking in
Post by: AlanBama on August 19, 2013, 03:05:59 pm
Hi guys, I can feel the love in all your replies.  Thank you so much!  Mark, I miss seeing you buddy....and Betty, you are an angel, and have always been so sweet to me...I appreciate you more than you know.

My Jeff -- you know we love you buddy.  You are a great friend, and we both appreciate you so much. 

The latest issue of POZ has stirred up so many feelings and emotions in me....I have felt, for years, that I am "getting by", but not "THRIVING".  I'm sure you know what I mean.  It is more and more of a struggle to get through the weeks.  I also have a friend who has been EXTREMELY ill and in the hospital; he is my best friend of 35+ years, and hiv negative.  He has colo-rectal cancer, has had a colostomy, and is on a feeding tube...one problem after another.  Seeing him in such a state has stirred up my bad memories of being in the hospital so much in the 90's, feelings I have repressed for a long time.  Health care now is all done on the computer; not much verbal contact between care providers; if it isn't on the computer screen, it isn't going to happen.  He was getting WAY too much TPN (or whatever you get from a feeding tube), at too high a rate, and not diluted enough; it has caused a major impaction, which he is not over yet....the nurses had no communication (or so it seems) with the doctor who kept ordering it to be run through at full force, full strength.  This crazy merry-go-round I have been on for the last 25+ years is just about to sling me off.....but I'm trying to keep on hangin' on!   Love to all of you,

Alan
Title: Re: Just checking in
Post by: harleymc on September 05, 2013, 07:22:35 am
Dear Alan,
 sorry to hear about your health woes, I've a very dear LTS friend here in oz that is also going though the Neurological issues, memory issues, headaches, nightmares, lack of sleep etc etc etc. The docs are trying hard to get drugs that'll cross the brain blood barrier, without viral resistance and hopefully minimal side effects in the brain.

Paul's a take charge kind of gentleman but this is a tough one even for him. So I totally feel for you, wish I was there to do all those silly friend things for you like cook a meal, take a walk together, & mostly to give you a big hug.

Big virtual hugs to you.
Title: Re: Just checking in
Post by: bear60 on September 05, 2013, 02:23:07 pm
Hi Alan
Good to hear from you.
Its too bad your pain is so elusive.  My partner Kurt is going thru something similar.....every test in the book shows ....nothing.
But you had me at climbing stairs and out of breath thinking.....oh ok he needs bypass surgery..   a stent or some such. Kurt had that done a few years ago.
Nothing is ever simple is it.
Joel
Title: Re: Just checking in
Post by: AlanBama on September 17, 2013, 05:26:01 pm
FOLLOW UP:

Well, I saw my doctor  (for about 5 minutes) yesterday.  My Nurse Practitioner had spent some time with me, listened to my lungs, etc.  My REAL doctor, (of 18 years, in Atlanta) used to tell me "you know your own body better than anybody".   I sure don't get that statement from my current doctor(s) anymore....I started Prezista, and gained about 15 lbs.   So, my COMMON SENSE tells me that perhaps that drug needs to be changed for something else....but NO WAY, according to them.   I need to walk, workout and eat less (maybe a salad each day?  who knows) to try to lose this.  I even asked to go back on Viramune and Truvada, but that was also disregarded.

Us LTSers are bumped out to 6-month and 1-yr appointments, while they make time and room for all the newly diagnosed and those new to our clinic (from a closed county facility, about 850 of them!) with all their needs, and serious health issues from having untreated HIV disease.   Every study that is advertised and everything that is promoted seems to be about "keeping them in care" and "getting them in treatment" and "helping them stay adherent to their meds".   All of these are GOOD and ADMIRABLE things, and I am FOR all of it!  It just seems that they have pushed us out of the way, or at least that is how it feels.  Us who have tried to take care of ourselves, be compliant and educated about our disease, and have tried to do all the RIGHT things are now in the backseat.

Well, you know I have always said that AIDS is a journey we are all on together; it's just that some of us are travelling in different ways!   I have now moved from the backseat of my 1978 ratty Chrysler Cordoba to an old lawnmower trailer, being pulled behind it; it has a floppy rear gate, no tail lights, no tag...and I am being drug along by my fingertips holding on for dear life to the floppy rear gate....

HUGS to all,
Alan
Title: Re: Just checking in
Post by: Jeff G on September 17, 2013, 05:36:28 pm
I just need the visual of soiled nickers for the last part of your post to burned into my mind .

I go to the same clinic as Alan and its true , we seem to be rolled onto the back burner there and it can be frustrating at times . Hang in there Alan , 10 doctors will come and go before you are done with that clinic , we seem to get new doctors about once a year .
Title: Re: Just checking in
Post by: AlanBama on September 18, 2013, 10:04:22 am
Yes, Jeff you are right; I am on my 3rd one since 2007.   Please forgive me for my "rant", I certainly am grateful for the care I receive.  I also feel like my providers are probably doing the best they can, in a tough situation.  There are just TOO MANY people, and too few doctors/nurses.

What I did not mention was that I look GREAT, on paper.  CD4 in the 600+ range, at 34%, and undetectable VL.   I'm sure that is the biggest factor in them pushing me out to 6 mos. for my next visit. 

I am just having trouble making the mental "switch" from the message of our healthcare providers, from "be educated, be compliant, PARTNER with your doctor, and stay involved in your healthcare" to "we need to bend over backwards to get people into care who don't want to be in care, and who won't take their meds or keep their appointments".   Now, do these people need help?  CERTAINLY.  I am 100% for helping ANYONE with hiv, and all of us deserve care and treatment.  It's just that I am feeling the "back burner" syndrome.

So my journey continues....
Title: Re: Just checking in
Post by: Jeff G on September 18, 2013, 10:13:39 am
OH Alan , its not a rant and I agree totally . I don't think our doctors appreciate what 30 years of inflammation does to a body , I doubt most people can understand unless you have lived the life . 

It was only in the last few years that doctors begrudgingly admitted that LTS and chronic pain for complications due to inflammation and other factors was valid and not all in our heads .

My numbers mostly look good on paper but I struggle every day , I know you do too .     
Title: Re: Just checking in
Post by: BT65 on September 18, 2013, 05:29:19 pm
I totally agree with both Alan and Jeff.  These doctors do not really know the full effects of long term HIV and how it feels, the changes that happen to the body, mind, etc. 

And yes, there are too few doctors specializing in HIV anymore.  We only have a few and too many people.  And trying to keep track of everyone taking their medication is not something I can feasibly do, even though it may be a "written part" of my job.  I do ask when I talk to clients, but there are so many clients, and not enough of us to work with them as intensely as they need.  Not enough money.  Isn't that always the case?

And Alan, thanks for your pm about SSA and work reviews.  They certainly scare the hell out of people.  I was expecting them to get back to me by now, since they only gave me 14 days to get the information back.  The waiting continues.....
Title: Re: Just checking in
Post by: aztecan on September 19, 2013, 09:36:17 am
Boy Alan, you have, once again, broached a very timely topic.

I am also one of those who went from the back seat to the trailer being towed behind.

In part, it is my own fault, because I get too busy. My most recent doctor visit, last month, was the first since November 2012.

I am also one of those, like Betty, who has to corral the miscreants and try to get them into care.

I have a half-dozen right now who are either very sloppy with their meds, or just don't take them.

The doctor here has clinic on Tuesday. This past week, none of those who came to see him had bothered to get their labs done. None.

But Alan, I am especially concerned about those of you in the South. From what I can tell, the South is rapidly becoming a third-world country and I am concerned about those I know living there. (I won't go into the politics of this, but I think you already understand them better than I.)

I don't have solutions for you. But please know you are ever in my thoughts.

HUGS,

Mark

Title: Re: Just checking in
Post by: AlanBama on November 04, 2013, 02:55:02 pm
Greetings folks!  Just checking in, to read a bit and to say "hello".

It always overwhelms me when I read in this forum - the amount of love and compassion I feel, that WE feel, for each other.

Mark, you are spot on, this state is becoming a "third world" country, regarding our hiv clinical care.  We just keep plugging along, hoping (and praying) for the best.

Special hugs to Jeff for giving me a much needed 'whop upside the head', regarding something stupid I was doing to myself.  I was taking a "drug holiday" with one of my meds, which of COURSE I am smart enough to know not to do -- but I was doing it anyway, mostly out of frustration at being #000590659 instead of "Alan" to my healthcare providers.  Some of you will understand what I mean by that.

The journey continues....

Love and Light to all,
Alan
Title: Re: Just checking in
Post by: Jeff G on November 04, 2013, 03:16:23 pm
Greetings folks!  Just checking in, to read a bit and to say "hello".

It always overwhelms me when I read in this forum - the amount of love and compassion I feel, that WE feel, for each other.

Mark, you are spot on, this state is becoming a "third world" country, regarding our hiv clinical care.  We just keep plugging along, hoping (and praying) for the best.

Special hugs to Jeff for giving me a much needed 'whop upside the head', regarding something stupid I was doing to myself.  I was taking a "drug holiday" with one of my meds, which of COURSE I am smart enough to know not to do -- but I was doing it anyway, mostly out of frustration at being #000590659 instead of "Alan" to my healthcare providers.  Some of you will understand what I mean by that.

The journey continues....

Love and Light to all,
Alan

I fully expect a whop upside the head as needed from you guys and know you will deliver  . As tough as we are even us LTS need a kick in the pants sometimes for a reality check .
Title: Re: Just checking in
Post by: Joe K on November 04, 2013, 03:43:31 pm
Dear Allan,

How good to see you and I am very sorry to hear or your trials and tribulations.  While I sympathize with the "back burner" issue, in one way, I consider it a badge of honor, that we worked damn hard to earn.  It always seemed to me, that the more a patient knew and the more compliant and progressive they were in treating their HIV, that the "perception" of their needs were lowered in the eyes of health professionals.  In a way, they see us as hardened veterans, who know when something is wrong and it seems they "expect" us to make our issues know, with little prodding.

I go to a hospital clinic and I get a new doctor every other year.  The first meeting always seem to be the same.  They review my chart and then ask if I have any issues.  They seem unsure of what to do with me, given my history and since I'm a low maintenance kind of guy, they are content to let me call the shots, most of the time.

I think that maybe you need to be a little stronger in voicing your concerns.  You are the ultimate gentleman, however, there are times when even a gentleman needs to raise a fuss to make his point heard.

Joe
Title: Re: Just checking in
Post by: BT65 on November 08, 2013, 04:06:44 am
Alan, I'm glad Jeff was there to "assist" you with the med issue.  Good to hear from you also.  I know medical care is getting very streamlined as far as doctor's remembering we're individuals instead of just "cases."  It sucks.

I hope you're doing better, you can always pm me. :-*
Title: Re: Just checking in
Post by: BT65 on November 16, 2013, 05:01:17 pm
TODAY IS ALAN'S BIRTHDAY!  HAPPY BIRTHDAY SWEETHEART! 

Love you and I hope you have fun celebrating. :-*
Title: Re: Just checking in
Post by: Theyer on November 17, 2013, 04:27:30 am
Hello Alan , we do not know each other so this is me introducing myself and wishing you happy birthday.Also to let you know how often my friends here mention you always with such fondness and love.

You have given me a term Back Burner that describes what I have been sensing over the past couple off years. Fortunately my clinic has started to recognize it. By chance ,lucky for me, my HIV Doc has been given special responsibilities for HIV and aging or is it Aging and HIV , anyway its a start.

Is it a struggle to attract newly Qualified Doctors into HIV work in USA now? Or like so much does it vary from state to state , private/public ?

Enough off that for now and back to wishing you a great birthday week.

Michael
Title: Re: Just checking in
Post by: mitch777 on November 17, 2013, 12:18:07 pm
Happy belated birthday Alan! :)
Title: Re: Just checking in
Post by: Jeff G on November 17, 2013, 12:50:31 pm
Alan and Layne joined me for dinner last night with our friends John and Tim . We had dinner out at a Italian place I have not eaten at yet and had a great time .

We went for a few drinks and back to my house for birthday cake , it was a nice tasty cake even if his name was spelled wrong on it . Bad spelling seems to be a thing with me and cakes don't have spell check . In my defense the mistake was the cake decorators fault and I didn't notice until I got it home . 
   
Title: Re: Just checking in
Post by: AlanBama on November 23, 2013, 03:21:24 pm
Thanks for the birthday greetings!  I had a WONDERFUL birthday, spent with my partner and my friends.  What could be better?

You should have seen this TIRED old group of guys, attempting to "go out".   We sat around and looked at each other awhile.....our "going out" time is still WAY too early for anyone much to be in the clubs....but we had fun.   We just decided we'd have MORE fun if we went home to Jeff's and got comfortable.

Jeff, you have become a great friend to me, and THANK YOU so much for the wonderful birthday.   We love you!

HUGS all around,
Alan
Title: Re: Just checking in
Post by: deibster on November 26, 2013, 12:36:55 am
Hello all,
I know it's difficult to up and move, but I don't understand how a LTSer can live in a Red state where the state keeps closing hiv clinics. I live in a small, gay town in MA and we have a great non-profit health organization. My doc is an Infectious disease doc who moved here when they closed St. Vincent's hospital in Greenwich Village, NY. He spends as much time as I need with me, 3 or 4 times per year. Our clinic is part of the Beth Israel Teaching Hospital in Boston, so whatever specialists we need come out here once or twice a month, Pulmonologists, etc.

We have a great ADAP program (called HDAP in MA), without any waiting list to get on the program. The same goes for ADAP in NY, and both states allow the Max income, that the Feds allow, to still be eligible for ADAP.
Hugs from Provincetown, Deiby
Title: Re: Just checking in
Post by: AlanBama on November 26, 2013, 12:37:47 pm
Hi deibster.

I totally agree that it would be much easier, as far as hiv care goes, to live in a 'progressive' state, rather than a backwards one like AL.   The thing about that is:
this is our home.   I was born and grew up here.   I have lived in two other states during my lifetime (GA and OK) but in the end, I moved back home.  My two brothers live here.   One of them provides MAJOR support to me and my partner.  My best friend of 36 yrs. lives here.  My partner still has both parents living (age 90 and 91), in AL.

So, do we move to a more progressive state like MA, or even CA, where we don't know anyone but would have better hiv care?  Or do we stick it out where we are, with family/friends and not-so-top-notch care?   It's a hard decision, and believe me, it is one we have pondered often.   Unfortunately, there is no easy answer. 

I'd say that for right now, we're doing the best we can.   :D
Title: Re: Just checking in
Post by: BT65 on November 27, 2013, 03:04:49 am
Alan, I know what you mean about it being difficult to move from your home.  I live in a red state, Indiana, and am only 20 minutes away from a town in Michigan, where I grew up. 

My daughter moved to Washington state and is always urging me to move there.  But, I'm familiar with this area, I have a great doctor, and a lot of my family still lives here.  Including my two oldest grandchildren.  So, while it may be nice to live in a more liberal area, it's not as easy as it sounds.
Title: Re: Just checking in
Post by: AlanBama on April 22, 2014, 12:51:22 pm
Hello my friends                             22 April 2014

I'm not going to attempt to post much today; my thoughts are all jumbled up, and I am still reeling from just learning that Rocky has died.   It is my own fault for not knowing; I don't check in to the forums much, and when I do, I only come to LTS, not Living With.

Just wanted to say hello, that I love you all, and that I could REALLY use a "group hug" today.   There are days that I feel I have outlived my usefulness, and today is one of them.   I'm going to try to relax now, and count all the many blessing I have in my life to be grateful for.

HUGS -- Alan
Title: Re: Just checking in
Post by: wolfter on April 22, 2014, 01:03:10 pm
I'm so sorry that you're feeling this way.  I'm sure a lot of it is dealing with the sudden loss of Rocky.  I truly believe that everyone was upset and full of shock and never considered if everyone who knew him had heard the news.

I couldn't even bring myself to comment at first and then it was a short quick post. 

Sending part of that group hug now. 

huge hugs buddy
greg
Title: Re: Just checking in
Post by: Jeff G on April 22, 2014, 01:26:16 pm
Hugs Alan . We all need them sometime .
Title: Re: Just checking in
Post by: Theyer on April 22, 2014, 03:55:19 pm
Dearest Alan,


How could someone like you outlive there usefulness , you may feel it ,but the essence off you makes the act impossible.

Tell your loved ones you love them , and try to reflect on how much you mean to so many. Tis the problem inescapable age brings losses.

Many hugs
Michael
Title: Re: Just checking in
Post by: deibster on April 22, 2014, 04:37:29 pm
I hope and pray that you got some rest and feel a little better, Alan. As the Dalai Lama said,
Pain is inevitable, Suffering is optional.

Big Hugs my friend, Deiby
Title: Re: Just checking in
Post by: mitch777 on April 22, 2014, 06:48:39 pm
(((Alan)))
Title: Re: Just checking in
Post by: Theyer on April 23, 2014, 07:30:50 am
Hey Alan come and talk to us , its Jeffs birthday today , as far as I can make out he,s talking teeth.

MrWillywump posted a site dealing with a river Parade that I am showing to coma victims because it will make them smile.   And he,s is snickering about an English apple dear to my heart called Cox,s Orange PIPPIN,
No one has explained why English Cox is apt to make Mr Wump and Mr Mitchel snicker so I am guessing as we are the mature group it must be about penises but I hate not having it confirmed.

hugsnlove
michael
Title: Re: Just checking in
Post by: BT65 on April 24, 2014, 04:51:52 am
Love you, Alan. :-* :-*  Sorry I'm a little late.
Title: Re: Just checking in
Post by: J.R.E. on April 24, 2014, 11:25:47 am


Big ((((hugs)))) to you Alan.


Ray
Title: Re: Just checking in
Post by: AlanBama on April 25, 2014, 11:03:49 am
Thanks everyone!  I am feeling better today.  I suppose we have all earned the right to have a BAD day now and then !

This long-term survivor shit gets to be quite overwhelming at times, doesn't it?  I think it's important to celebrate the positive things that happen, but also to allow ourselves to experience the negative things fully, as well.  As my dear friend and fellow LTSer Lis says, "let's keep it real".

I don't have any inspirational words of wisdom today....
Guess I'll get out and about and see people and things, and BE seen too.  As this old lady in my church says "Honey, it's better to be seen than to be viewed".  Ain't it the truth???

Love you all -- Alan

Title: Re: Just checking in
Post by: guitargal on April 25, 2014, 04:20:11 pm
glad you "checked in"

"For example, I had this MRI and evoked potential a few weeks ago; my next appointment (to find out the results) is not until Nov. 5th.  "

that is unacceptable..
Title: Re: Just checking in
Post by: Theyer on April 26, 2014, 06:31:47 am
Thanks everyone!  I am feeling better today.  I suppose we have all earned the right to have a BAD day now and then !

This long-term survivor shit gets to be quite overwhelming at times, doesn't it?  I think it's important to celebrate the positive things that happen, but also to allow ourselves to experience the negative things fully, as well.  As my dear friend and fellow LTSer Lis says, "let's keep it real".

I don't have any inspirational words of wisdom today....
Guess I'll get out and about and see people and things, and BE seen too.  As this old lady in my church says "Honey, it's better to be seen than to be viewed".  Ain't it the truth???

Love you all -- Alan



As to the ? you asked YES YES and YES, it,s hard work staying out off Hospital and keeping things going. And I am guilty off not keeping it real as I often want to use my forum time to escape or to use the most creative part off the day for. 

Love the old lady Quote.
Hugs Alan
Michael
Title: Re: Just checking in
Post by: Theyer on April 26, 2014, 06:36:03 am
glad you "checked in"

"For example, I had this MRI and evoked potential a few weeks ago; my next appointment (to find out the results) is not until Nov. 5th.  "

that is unacceptable..


I would be tempted to ask , Nov 5th what year please?

Yes that desearves a meltdown. 
Title: Re: Just checking in
Post by: wolfter on April 27, 2014, 09:55:35 am
Hell Alan, so many of us have experienced bad years that occasional bad day is a piece of cake.  Glad you're feeling better.
Title: Re: Just checking in
Post by: deibster on April 29, 2014, 01:20:51 pm
As the Dalia Lama said,
Pain is inevitable,
Suffering is optional.

Big hugs, Deiby
Title: Re: Just checking in
Post by: AlanBama on May 02, 2014, 11:52:42 am
Hi everyone!  thanks for the love, the hugs, and the laughs.   I love you all.

We're doing pretty well, I suppose; the husband has been ill for a couple of weeks now, but he is much better the last 2 days.   I took him for 'sick call' at our HIV Clinic on Wednesday; we might as well have visited the dark side of the moon, for all the good it did!  I know y'all are tired of my "poor quality health care" complaints, so I'll just keep them to myself. 

I will give you some snippets of a recent visit to the dermatologist at the clinic, just for comic relief!

We walk in;  nurse enters... "Why are you here"?
Me:  I'm here for follow up for the the cancerous lesions on my lower legs.
Nurse:  "Oh.  OK."   (writes that on a yellow sticky note, and sticks to billing sheet, which is the only piece of paper in the room)
Doctor comes in:   "So you're here for follow up.   What have you been treating these lesions with?"
Me: the Imiquimod cream you prescribed....did  6 weeks of treatment.   Then did not see you due to appointments being "bumped further out", for 6 months.
Doctor:  "Well the lesions are still there" (DUH) ; let's do another round of Imiquimod.  See you at the end of May".

Could have done the whole visit by phone!  LOL

HUGS, Alan   ;D
Title: Re: Just checking in
Post by: Theyer on May 03, 2014, 12:50:27 pm
Indeed.
Alan vent the the stuff here its important. The detail,s like the nurse who could not spare the energy to add Hi and now remind me what are you here for you gorgeous reason for my paycheck

Manners, courtesy , respect can be kept up under huge levels off pressure, it helps manage and decrease the pressure for one thing.

 If the care you are receiving is poor blog it , I am sorry you have to experience it it but I also want the info as its a part off the whole that the forum has in terms off a historical document . Also off course the good stuff.

I find ignoring bad manners very effective, at the point where the worker is about to go melt down I then say
I,m sorry I had no idea that you where actually addressing a Patient in that manner, now that I realize you are.....it works and makes me feel so much better.
Title: Re: Just checking in
Post by: AlanBama on May 09, 2014, 04:42:41 pm
I will see this doctor (dermatologist) again, on Wednesday May 14th; perhaps I will put my phone (or my partner's) on RECORD while we're in the exam room, so I can relay the conversation.... ;)

Coming up on 9 months with these cancer lesions; just one of MANY things that manages to strip you of your dignity/appearance.  It's time (past time, actually) here in North AL to start wearing shorts.  My legs, which used to be my best feature, are not much, but to add to the white glare  8)  I will have these ugly-looking spots, like sores, on full display....

I'm actually doing really well right now, both mentally and physically; my partner's been having a rough time lately, with prostatitis and UTI, and taking the powerful antibiotics to treat these....so we're home a lot.

Thanks for listening!   HUGS all around,

Alan

Title: Re: Just checking in
Post by: AlanBama on June 08, 2014, 03:56:09 pm
Hi gang

I had three lesions removed from my left lower leg by Electrodesiccation ("burned off") last Wednesday.  I was given an option of having them surgically removed (less scarring, but requires more visits, stitches, etc).  I opted for "immediate" remedy.   It means less trips for me to the dermatologist (65 miles away).   I asked what about the other lesions on that leg, and also on the other leg?   We will "watch and wait".

OK, I'm pretty good at that!  I can wait, and I can watch.

The upside to the whole day was a visit to Jeff's house and lunch at his favorite Chinese buffet.  I don't get to see him NEARLY often enough!

I've had a place on my gums that absolutely would NOT heal, despite many treatments and 'daily doctoring' by me, for over 9 months now.  Our HIV Dental clinic has kept stringing me along, saying "let's wait and see if it will heal"....then, 3 or 4 months later, I'd be back for a cleaning, and it still hadn't healed.  That happened like 3 or 4 times; FINALLY, they have me set up to see a periodonist on Friday.   Some of you will get a kick out of this:  the place decided to HEAL on its own last week!  So I guess in this case, their theory of "keep putting them off and maybe the problem will go away", has worked!  I'm keeping the appointment anyway.  Nothing to lose, right?

Hope everyone is having a nice summer!

LOVE, Alan
Title: Re: Just checking in
Post by: Jeff G on June 08, 2014, 04:12:31 pm
Im ready to go to lunch again anytime you are Alan . I want to take Miss P to the this buffet , I think he may change his mind about all buffets being bad .
Title: Re: Just checking in
Post by: J.R.E. on June 08, 2014, 11:32:39 pm
Hi gang

I had three lesions removed from my left lower leg by Electrodesiccation ("burned off") last Wednesday.

  the place decided to HEAL on its own last week!  So I guess in this case, their theory of "keep putting them off and maybe the problem will go away", has worked!  I'm keeping the appointment anyway.  Nothing to lose, right?

Hope everyone is having a nice summer!

LOVE, Alan


Did they give you any feedback on what these lesions were Alan ?  Or was it Actinic Keratosis.

It appears that most skin problems I've had through the years have always been from the waist up, and primarily on my left side.

It's always good to catch these things early.


Yes, Keep the appointment with the periodontist !! Do you wear partials ? Maybe some irritation, but yes get it checked anyway.


Summer is going just fine so far !!  I slathered the 110 sun screen on myself today,  :P     and we had our first swim in the Gulf for the year. Water was nice !!   8)


Take care Alan and have a great summer !!


Ray





Title: Re: Just checking in
Post by: AlanBama on June 09, 2014, 04:36:48 pm
Hey Ray!  glad you're having fun at the Gulf!  It's wonderful, isn't it?  I just love Gulf Beaches, especially on the Emerald Coast.

The lesions were basal cell carcinoma; I have quite a few more 'spots', one of which was biopsied and was the same thing, so I would assume all the spots are the same, since 4 have had definite diagnosis.

Not sure if this is from when I was a sun worshiper in the 80's, or a tanning bed regular in the 90's - 00's.  Anyway, no sun for me  :(   It's just as well really; I just can't take the sun anymore.   Don't enjoy it AT ALL.

I don't wear partials, but the gum "spot" is next to a crown....will find out what's up Friday.

HUGS !!!
Title: Re: Just checking in
Post by: Theyer on June 09, 2014, 05:07:24 pm
For a while I get really mad at something healing before the appointment which is mad in itself. I love the sun but increasingly it does not seem to love me 80+ and I am mogadon michael without the dribbling,got that to look forward too.

Every summer I have spent on Orkney there is always the Day when I forget all the past summers and try swimming in the sea. Every year I discover that the cold is such I cannot breath and swim .

Have plenty more dips Ray , and Alan check them spots as you do.
Title: Re: Just checking in
Post by: J.R.E. on June 09, 2014, 05:49:34 pm


Speaking of Summertime, check out the porkchops :  ;D


http://www.youtube.com/watch?v=wvUQcnfwUUM



Ray
Title: Re: Just checking in
Post by: AlanBama on June 25, 2014, 03:41:41 pm
LOL I haven't thought about Mungo Jerry in ages!   

Saw the periodontist; I do have some minor bone loss in one spot, so she's going to do surgery on that, sometime in July or August.   I (stupidly) didn't ask "where does the bone come from that you will graft?"   I assume it comes from lower down on the jawbone?  I guess I'd better be finding out!  Has anyone had bone-loss gum surgery?

HUGS,
Alan
Title: Re: Just checking in
Post by: aztecan on June 30, 2014, 11:24:10 pm
Hey Alan,

I've never had that particular surgery done.

I will keep you in my thoughts and prayers.

HUGS,

Mark
Title: Re: Just checking in
Post by: AlanBama on July 16, 2014, 11:31:51 am
Hi

I had the periodontal surgery last Friday; I think I am healing quite well.   The surgery itself was no fun, but I did o.k. -- was in the chair approx. 2 hours.   The gums were 'split open', and the Periodontist spent about one hour scraping, filing, grinding, and picking at the exposed bone.  Then cadaver bone was grafted (glued) in place, the dead gum tissue 'trimmed', and then the gums were sewn back together.  This is at UAB's School of Dentistry, so it is a teaching situation; I had two sets of hands in my mouth, and one young lady was there strictly to photograph each step of the process.  My lips were sore and split open in the corners from having so much jammed in my mouth (no wise cracks from the peanut gallery!) and it was pretty sore the first couple of days, but I'm doing quite well with it now.  I'll return next Monday for follow up.

The irony of it all is:   I have THOUSANDS of dollars worth of dental work in my mouth; if it were on wheels, it would be a Mercedes!   But I don't have "pretty teeth", by any stretch of the imagination.  You'd think I should (by now) have a movie star smile; at least a very WHITE set of teeth! Oh well, at least I have all my own teeth (plus crowns, etc). 

HUGS !!!   Alan

PS - try eating without using one whole side of your mouth, and not brushing your teeth on one whole lower quadrant!   You'd think I might lose some weight..... >:(
Title: Re: Just checking in
Post by: Miss Philicia on July 16, 2014, 11:47:08 am

The irony of it all is:   I have THOUSANDS of dollars worth of dental work in my mouth; if it were on wheels, it would be a Mercedes!   But I don't have "pretty teeth", by any stretch of the imagination.  You'd think I should (by now) have a movie star smile; at least a very WHITE set of teeth! Oh well, at least I have all my own teeth (plus crowns, etc). 

My mouth is the same Alan -- thousands $$ of work though like you I go to a university for the work. I hope I don't have to do the gum thing next like you. They did an assessment of it earlier this year and they thought my gums, while not great, weren't horrid. I definitely think long-term use of multiple medications for HIV and non-HIV things take their toll on the  daily production of saliva, which in terms is not good for dental health.

Like you I still have all my teeth but wonder where I'll be in another decade considering everything that's been done in the past decade.

I hope the healing process goes well for you.
Title: Re: Just checking in
Post by: J.R.E. on July 16, 2014, 12:45:35 pm

Hi Alan,

Hope your healing continues to go well ! Years ago, I had a stubborn wisdom tooth, that refused to come out.  Long story short, they ( took 2 of them) , finally got it out after struggling with it,  but not without me feeling a cracking sensation on the left side of my face.

My jaw was sore for about 3 months, and I am convinced to this day, that's how my TMJ had started.  Fortunately,  I haven't had any issue with TMJ , for probably 12 years or longer.

I need to schedule a cleaning soon, I received the notice card in the mail the other day.


Take Care----Ray
Title: Re: Just checking in
Post by: AlanBama on July 16, 2014, 01:02:42 pm
They told me that I can't have my teeth "scaled" (cleaned) for at least six months in the area of the graft....  kinda yucky, also!
Title: Re: Just checking in
Post by: mitch777 on July 16, 2014, 04:49:35 pm
I feel for you Alan. Last year was my turn for major dental work. Not fun, not fun in the least. Sorry the timing was bad while I was in Alabama. Speedy healing!
Title: Re: Just checking in
Post by: wolfter on July 16, 2014, 05:18:23 pm
That all sounds horrid Alan, but at least you're through with it.  Hope it all heals nicely so you'll be permanently done.

Title: Re: Just checking in
Post by: Miss Philicia on July 16, 2014, 05:19:17 pm
I've been to the dentist 20 times in the past three years -- half of that was the past 12 months. And I still have one more crown to be done.

That's better than the 35 visits with my podiatrist though, same time period.
Title: Re: Just checking in
Post by: Jeff G on July 16, 2014, 05:31:18 pm
 Hang in there Alan and hope to see you soon .... this weekend I hope .  ;D .
Title: Re: Just checking in
Post by: BT65 on July 16, 2014, 07:41:48 pm
Alan, so sorry about what you're going through.  I can relate to dental issues, believe me.  I had to have whatever teeth hadn't been knocked out (I used to fight a lot lol), or rotted out, all pulled out in 1989.  The lab couldn't get my dentures right, so, when I was 24, I had to go without any teeth for practically a whole summer.  Not fun.

I hope you heal quickly and as painless as possible.  Please take care sweetie, you deserve a break!

Betty
Title: Re: Just checking in
Post by: aztecan on July 17, 2014, 12:12:55 am
Hey Alan,

I am glad the surgery went well. I haven't had that surgery as yet, but I have to go every three months for scaling and cleaning.

No matter how often I brush or floss, the stuff seems to accumulate.

Keep us posted on how you are doing.

HUGS,

Mark
Title: Re: Just checking in
Post by: AlanBama on August 04, 2014, 01:35:00 pm
Hi guys,

Just wanted to let you know that I have done very well with this procedure.  It healed up nicely, and I was not ever in major pain, just some discomfort the first few days, and the aggravation of not being able to eat on that side of my mouth.

I hope this is not a "preview of coming attractions"....my Dad had gum disease, and eventually had to get dentures.  My oldest brother (74) is currently going through the process of getting dentures; he has his upper plate, and they are pulling teeth on the lower now. 

I hope everyone is having a good summer!  My dear friend of 30+ years, Jim from Oklahoma came to visit us a few weeks ago.   We had a great time.   I had not seen him in 10 years, so we were WAY overdue for a visit.  Mercifully, this summer has been much cooler than normal here in the deep South.

HUGS all around,
Alan
Title: Re: Just checking in
Post by: mitch777 on August 04, 2014, 08:07:33 pm
Hey Alan, So glad to hear that it wasn't the ordeal you thought it might be. I HATE DENTAL WORK but it's a necessary evil.

Hope your summer remains cool. Well, cool for the south anyway.

Title: Re: Just checking in
Post by: AlanBama on August 14, 2014, 02:26:48 pm
Hi gang,

I'm doing pretty good these days.   Not too many complaints, aches and pains.  However, it is TOUGH as hell for me to get up out of the bed on workdays.  I've always hated getting up in the morning though, so I think that's an "Alan thing" and not a LTS thing.   :P

My urologist added Finesteride (Proscar) to my Alfuzosin (Uroxatrol) for my BPH earlier this summer.  I don't  think it was helping, but I have noticed that I have become EXTREMELY nauseated all the time.  I haven't had to deal with that in quite awhile!  I inquired about it, and was told "Oh, it couldn't POSSIBLY be that, it can't make you nauseous".  So this week, when I set up my drug box, I left the Proscar out.  So far, I have had ZERO nausea.  I wish I had a doctor (as I did for 18 yrs) who would LISTEN to what I say, and take me seriously.   As it is now, I am almost 'afraid' to bring up problems, because they are going to try to paint me as a hypochondriac, or a doddering old fool.  So I mainly keep my mouth shut.   Right now, I would like a referral to an ENT, for these HUGE knots/lymph nodes in my throat and neck, that aggravate me quite a bit most days.  But I've already been told "oh everybody has a sore throat, it's allergies".   ::)

HUGS TO ALL, hope you're having a good summer!

Alan
Title: Re: Just checking in
Post by: AlanBama on October 12, 2014, 12:16:16 pm
this is my THIRD attempt to post; twice I have typed up a long post, then for some reason it disappears....spooky.

I have a malignant tumor in the base of my tongue.   Not sure how much lymph node involvement.   It's been a rough few days; left hospital after biopsy surgery without having peed; had to go to ER that night, sat for over 3 hours before I could get catheterized.  Pure agony.

Thanks for your thoughts and prayers.  I will let y'all know what is going on, or will have Jeff post on my behalf.

LOVE, Alan
Title: Re: Just checking in
Post by: Jeff G on October 12, 2014, 12:20:28 pm
Alan has had a very rough few weeks and my heart goes out to him and his partner Layne.
They both have been handling this tough diagnosis like champs but I am happy that he has posted so his forum family can offer support as well . Love you guys ! 
Title: Re: Just checking in
Post by: Wade on October 12, 2014, 12:48:34 pm
Hi Alan,
You have every bit of good energy I can muster up sent your way,
My thoughts and prayers are with you and yours, you are very brave.
I hope you get some encouraging news soon .   
   All My Best , Wade
                                                                         
Title: Re: Just checking in
Post by: leatherman on October 12, 2014, 01:48:29 pm
hugs and kisses, Alan.
best wishes persevering through yet more issues  :-*
Title: Re: Just checking in
Post by: J.R.E. on October 12, 2014, 02:11:28 pm


Hang in there Alan,... We're keeping you in our thoughts !


Ray
Title: Re: Just checking in
Post by: deibster on October 12, 2014, 07:13:40 pm
We're pulling for you Alan.
 Sending prayers & positive energy your way.
  Big Hugs from Provincetown, Deiby
Title: Re: Just checking in
Post by: mitch777 on October 12, 2014, 07:49:39 pm
You will be in my daily thoughts Alan. Hoping along with you for some better news to come. Hang in there.

Hugs,
Mark
Title: Re: Just checking in
Post by: Miss Philicia on October 13, 2014, 07:26:07 am
Hey Alan, I hope that turns out OK for you and will be thinking of you.

David
Title: Re: Just checking in
Post by: wolfter on October 13, 2014, 08:35:08 am
You're definitely in my thoughts and I hope this nightmare ends soon.

take care of yourselves.
Title: Re: Just checking in
Post by: BT65 on October 14, 2014, 10:02:14 am
Wow Alan. I am so, so sorry you're going through this. I am definitely keeping you and your partner in my thoughts and prayers. You are always such a huge supporter for everyone else here, I hope we can reciprocate.  Take care of yourself sweetie, be gentle. I love you, Betty
Title: Re: Just checking in
Post by: AlanBama on October 15, 2014, 03:18:38 pm
Thanks guys, and Betty -- Love you too, honey.

I'm doing o.k., my throat's pretty wacked right now, from the biopsies.   Taking liquid hydrocodone, which to me, doesn't do a lot...and am back at work.

My next visit with the oncologist is Oct 23rd.  By then, ALL biopsy results should be in, and my case will have come before the "Tumor Board" at UAB, where they will plan out the best strategy for treatment.   The doctor did mention surgery and radiation, either one or both.  Will know more a week from tomorrow.

Thanks for your prayers and concerns.

Love & hugs, Alan
Title: Re: Just checking in
Post by: OneTampa on October 15, 2014, 05:12:42 pm
Alan,

Just want to give you my best wishes.

Take care of yourself.

OT
Title: Re: Just checking in
Post by: Buckmark on October 15, 2014, 06:40:18 pm
Alan,

I'm so sorry you're having to go through this.  I know first-hand that treatment for cancer isn't fun, neither chemo nor radiation nor surgery.  But you can get through it.  And every cancer is different -- I have a friend who had BOT cancer, and just got his second "all clear" a few days ago, and he still has his complete tongue.

I'm glad a board of physicians will be reviewing your case, and particularly your biopsies.  I wish I had gotten a second opinion right off the bat, as my cancer turned out to be a slightly different variant than my oncologist thought.  It was only by luck that I still received the right treatment.  The biopsies and the pathology work on them are so, so important to getting the right diagnosis, and thus the right treatment.

Don't be afraid to ask questions of your doctor(s), including what other treatment regimens they might consider.  It's your body, your decision.  You're fortunate to have your partner at your side as you go through this.  I'll be thinking of you and praying for you.

Hugs,

Henry
Title: Re: Just checking in
Post by: AlanBama on October 16, 2014, 03:38:01 pm
Thanks, OT and Henry, I appreciate it guys!

I'll take all the prayers/ positive thoughts/ good vibes/ good energy I can get!

Waiting today to see if I can get a refill on my liquid hydrocodone for pain; now that they've made it a giant pain in the ass to try to get some pain meds.  They will have to mail me a written Rx, as we have no plans to return to Birmingham until the appointment next Thursday.

HUGS -- Alan
Title: Re: Just checking in
Post by: Theyer on October 20, 2014, 08:15:20 am
Oh Alan Buggerthemoorhenandfucktheduck I am sorry to read your news. Hope you very quickly get things going so drug availability is not a problem and the care and treatment you need is as loving and easy as Possible. Keep posting lots off love
Michael
Title: Re: Just checking in
Post by: AlanBama on October 22, 2014, 02:46:25 pm
thanks Michael.

Tomorrow is "D Day", so I should have something to report after that.

HUGS,
Alan
Title: Re: Just checking in
Post by: mitch777 on October 22, 2014, 05:35:36 pm
Best wishes from me to you tomorrow Alan.
Title: Re: Just checking in
Post by: AlanBama on October 24, 2014, 10:03:23 am
Hello!

Just wanted to let you all know what is going on:   We went to the throat surgeon yesterday; they hit us with so much information, we were overwhelmed and just stunned.    Through all of it, I think we have come up with a plan.

If things go as scheduled, I will have TORS (trans oral robotic surgery) on Nov 7th.   If they are unable to clearly removed the tumor with the robot, they will STOP and pull out.

At this point, the other option was for them to split my jawbone open between my center bottom teeth, and fold back the right side, so they could have access to the tongue; then, remove the tumor, and try to 'rebuild' the tongue, from tissue from my arm or stomach.   I just would not agree to this; I can imagine that after something like that, I would never be "right" again.   It's just too drastic.

I am not 100% clear on this, but I think that then I will go through 7-8 weeks of radiation, every day, along with chemo.
What I'm not clear on, is if they DO successfully remove the tumor, will the length of time be less for radiation....or will it be the same either way?

I will be seeing the Radiation Oncologist, Dr. Sharon Spencer of UAB as soon as they can work me in.   I will know a lot more about the chemo/radiation portion of my treatment after I see her.

My prayer now is that they can successfully remove the tumor robotically on Nov 7th.

Will keep you all posted.   Thanks again for your prayers, concerns, and positive thoughts.

LOVE --   Alan

Title: Re: Just checking in
Post by: Jeff G on October 24, 2014, 10:28:58 am
You and Layne will be in thoughts daily . I do appreciate the updates . 
Title: Re: Just checking in
Post by: wolfter on October 24, 2014, 11:02:04 am
OH Alan, simply can't express appropriate sentiments.  You will definitely be in my thoughts and I'm sending the most powerful positive thoughts I can muster.

Take care of yourself and know you're in many peoples' thoughts.

huge ole hugs
greg
Title: Re: Just checking in
Post by: aztecan on October 26, 2014, 04:26:37 pm
Alan, dear friend, I am sorry I have been absent during part of this.
You know I will be sending all the prayers and positive, healing energy that I can muster for you.

(((((HUGS))))


Mark
Title: Re: Just checking in
Post by: mitch777 on October 26, 2014, 05:42:30 pm
Still thinking of you Alan and I hope all goes terrific on the 7th.
More hugs!
Title: Re: Just checking in
Post by: Buckmark on October 26, 2014, 10:19:33 pm
Alan,

Undoubtedly you have been overloaded with information.  I'm glad you've been given  options for treatment, and are choosing the one that is right for you.  Don't be afraid to ask all the questions you need.  I'll be thinking of you, and praying for a successful result on November 7th.

Hugs,

Henry
Title: Re: Just checking in
Post by: AlanBama on October 30, 2014, 01:34:44 pm
Met with the radiation oncologist yesterday; I like her very much; she was my partner's doctor when he had radiation in 2006-2007.   I am most likely looking at 7 straight weeks of radiation.   She told me it will be very tough; taste buds will be 'killed' as well as saliva glands....so I'm going to be basically on a strictly liquid diet after about the 3rd week.   We'll be cranking up the blender I suppose!   I will have a GT tube, so my meds will be crushed up and delivered via the tube.   Details have NOT been discussed at all with us (who crushes up the pills?  pharmacy?  us?)  I will have a tracheostomy for a day or two, after surgery, to make certain my airway is clear and working properly.

It's just SO MUCH to digest.   My saint of a brother has announced to us that we are to NOT worry about money during this ordeal; he will pay for anything we need.   How lucky and blessed am I to have that?

I fought a LOT of medical problems, in the 90's.  Of course, I was a lot younger then!   But I think I can still do it.  Thanks for the prayers and concerns, they are much appreciated.

HUGS -- Alan
Title: Re: Just checking in
Post by: Jeff G on October 30, 2014, 04:52:46 pm
Alan ... you will be in my thoughts . I saw this earlier and could not bring myself to post but please know I love you guys . It is allot to digest and words fail me . Hugs .
Title: Re: Just checking in
Post by: BT65 on October 31, 2014, 07:51:51 am
Alan, I am so sorry to read this. Of course you will be in my thoughts and prayers. I love you! 
Title: Re: Just checking in
Post by: aztecan on October 31, 2014, 06:16:59 pm
Alan, you know you will be in my thoughts and prayers.

From experience I have had, you probably will be the one crushing the pills.

You are stronger than you know. We will be there for you as well.

HUGS,

Mark
Title: Re: Just checking in
Post by: mitch777 on November 01, 2014, 03:02:57 pm

You are in my thoughts Alan. I guess you just have to take things as they come. You can do this!

Hugs,
Mark
Title: Re: Just checking in
Post by: Jeff G on November 09, 2014, 02:14:33 pm
I just spoke with Layne, Alan's husband and texted with Alan . Alan asked me to update his his thread and let you guys know that he made it through the 6 hour + surgery and is recuperating at UAB hospital in Birmingham Alabama . Alan will be in the hospital a little longer than anticipated due to the surgeons having to remove a significant amount of tissue that was interwoven in the lymph nodes in his neck . He said I could post pics of the after surgery but I am not too good at posting pics as you guys might know .

Alan wont mind me saying since you would have seen the pics and thought the same ... Alan has a long road to recovery, the pics are a bit heartbreaking but I know he will heal in time and the scars will fade, I know Alan and he is determined to fight through this and get well . I hope you guys join me in letting Alan know we are here for him and sending positive thoughts and get well wishes .   
Title: Re: Just checking in
Post by: mitch777 on November 09, 2014, 04:26:54 pm
Thanks for the update Jeff. My heart goes out to Alan and Layne. My thoughts will be with them until his full recovery.
Title: Re: Just checking in
Post by: Jeff G on November 09, 2014, 04:38:10 pm
Alan is tough . He was texting me to see how I was feeling, that is the kind of guy he is . He is laying up in the Hospital cut ear to ear and he is sending out text asking me about my prostate infection . Tough but a sweetheart all the same and always a gentleman .
Title: Re: Just checking in
Post by: BT65 on November 09, 2014, 05:15:03 pm
Yeah, I got an email from Alan with the after surgery pic.  But I am not good at posting pics either. 

Just continual thoughts with Alan and Layne.  As Jeff said, it's going to be a long road for Alan.  Such a tough man, my heart goes out, definitely.
Title: Re: Just checking in
Post by: J.R.E. on November 09, 2014, 08:16:12 pm
Dear Alan,..

Believe me when I say, you have so much support , from all the forums members.! But I think you already know that.

Ed and I continue to keep you in our thoughts, and wish you a very speedy recovery.


Hang in there Alan ( Hugs)  -----Ray
Title: Re: Just checking in
Post by: Theyer on November 10, 2014, 02:25:32 am
Dearest Alan,

Much love to you Mr Southern Gent . I hope you can feel that as each day passes your one day nearer when this period will be history .

Will be checking in to follow your progress

Lots of love
Michael
Title: Re: Just checking in
Post by: Jeff G on November 16, 2014, 03:06:07 pm
Today is Alan's Birthday .... Happy Birthday Alan, hope you find some comfort and joy today as you continue to get better .
Title: Re: Just checking in
Post by: mitch777 on November 16, 2014, 06:38:02 pm
Happy Birthday Alan! Sending you my best huggers possible. I hope your nurses treated you extra special today!
Title: Re: Just checking in
Post by: Wade on November 16, 2014, 07:40:47 pm
Happy Birthday Allen !
Hope you are feeling better , and stronger everyday.. !!

Give it Hell and Get Well !!!  Wade
Title: Re: Just checking in
Post by: Jeff G on November 17, 2014, 07:42:49 pm
I was able to go and visit with Alan today, the high point of my day for sure . He looked really good and I was impressed at how well he is doing, Im not just making nice he looked great .

Alan asked me to tell you guys some specific things and even asked me to take notes because it’s really important for people to know this . He wants you guys to know that during the 90’s he got sick and almost didn’t make it, he was very sick and very alone back then and when he was at his lowest moment no one came and he was all alone .

Alan wants you guys to know that he is truly humbled and feels blessed to have his family and Layne by his side during this time, this time he is not alone  . He wants you guys to know his brother has been there for him and often by his side . He also wants you guys to know he is humbled and blown away by how Layne his partner has nursed and cared for him . I got the feeling that Alan is feeling very loved and very cared for and he just wants others to share that feeling and that joy he is feeling while he is recovering from this . I hope my note taking did justice to his feelings and what Alan wanted you guys to know and hope he will be able to update this thread soon on his own .

He also wanted me to share with you that he often thinks he is in Atlanta when he wakes up and that the morphine is making for some interesting times during the rare time he is alone … he told me to tell you guys that he sees fabric blowing, beautiful fabric blowing  all around his room and that its ok because its good quality fabric LOL . We laughed a good bit about that and the fact that no matter how sick you are, once a queen always a queen .

We had a great visit and I can’t tell you guys how glad I was to see him and see how well he is doing . I know now that Alan is going to be OK .
Title: Re: Just checking in
Post by: mitch777 on November 18, 2014, 05:51:38 pm
Thanks for the update Jeff. Dreams of good quality fabric are a good sign. lol. I just woke up from a 2 1/2 hour nap and will not be divulging my dreams. :o

Hope to hear from you soon Alan!
Title: Re: Just checking in
Post by: Wade on November 18, 2014, 09:19:33 pm
Thanks Jeff , Glad he has lots of love around him !
 He will surly get well and heal quicker..
Title: Re: Just checking in
Post by: wolfter on November 19, 2014, 09:06:03 am
thanks for the update Jeff.  If you are in contact with him before he returns, make sure and send him well wishes from us all.
Title: Re: Just checking in
Post by: Jeff G on November 19, 2014, 09:26:35 am
I got a message that Alan was released yesterday afternoon at 4 Pm . He is still very weak and shaky since he is still unable to eat any thing substantial other than sips . I was surprised to hear he is home but then not really, he looked great the other day and the man knows how to fight for his life because this is not the first time he has been critically ill . He can only talk a little at a time because the tracheostomy has not closed all the way yet .

I will make sure he knows you guys are asking after him and sending good vibes and love his way . I cant stress enough how much the support that has come his way has done for him . When I visited he grabbed that pen and paper and gave it to me and told me to take notes for this thread because he was bursting with love for all of those that stood by him and wished him well, it was hard not to cry even though the tears were happy ones . I have never in my life seen a man as grateful and humbled as Alan and he wants you guys to know it .
Title: Re: Just checking in
Post by: Buckmark on November 19, 2014, 10:21:06 am
Jeff -- Thanks for the updates from Alan.  I'm really glad he is getting lots of good care and the attention he needs / deserves, and has been released from the hospital.

Alan -- Keep on fighting!  And enjoy your fabulous fabrics.   :D   Just keep on thinking of healing as you go through all these treatments (even though they don't feel very healing, they will be in the long term).  You will get through this.

Henry
Title: Re: Just checking in
Post by: Theyer on November 20, 2014, 05:36:06 am
Although I thank Jeff for his reports it will be a day to celebrate reading your first post op post Alan . you let all those folks shower there love on you Alan , for this is a time for what goes around comes around muchlove
Michael
Title: Re: Just checking in
Post by: AlanBama on November 20, 2014, 09:54:14 pm
Love you guys so much-- my Jeff, you are a treasure to both of us.  Thank you for everything (my flowers are still pretty!)

Lord, from what I remember, this hospital "shit" was easier 20 yrs ago!  Now it's trying to recuperate, trying to eat,  (I still can't), trying to do all the right stuff, and begin to face the mountains of paperwork and bills waiting for me after being away from home for 11 days.

My tongue is about 2-3 times normal size; my trach still hasn't completely sealed; my temperature is all over the place; my weight went from 182 to 166.  I just hope I can get back to something remotely like normal, before chemo and radiation begin.  Will post again as soon as I can .

Love to all , Alan
Title: Re: Just checking in
Post by: Jeff G on November 20, 2014, 09:56:24 pm
Its great to see an update from you Alan .... very much so .
Title: Re: Just checking in
Post by: mitch777 on November 21, 2014, 03:20:38 pm
Good to see you are home and even posting Alan. Thanks for touching base!
Title: Re: Just checking in
Post by: BT65 on November 21, 2014, 04:07:45 pm
Alan so good to see you post!  I'm still praying for you and sending you peace!

Love you tons-
Betty
Title: Re: Just checking in
Post by: aztecan on November 23, 2014, 10:23:24 pm
Alan, I am very glad to see your post.

Lots of healing energy coming to you.

HUGS,

Mark
Title: Re: Just checking in
Post by: AlanBama on January 11, 2015, 05:14:40 pm
hi friends

just a quick update, on my phone ( so it may be a big mess). 1st chemo down; was fine the 1st day after; 2nd day, ROUGH.  thank god for my built in nurse !  he takes such good care of me.  I'm pretty much like an old dog on a leash, strapped to this Peg Tube pump for nutrition AND for the mega fluids I need to flush out this Cisplatin.

Tomorrow : day 3 of radiation, 30 more to go.  they have me putting that udder cream body cream on my burnt neck , face and chest.  it seems to help. So far everyone has been great , wonderful caregivers. Lord there are SO MANY people on Chemo. On day 1 I was seated next to a mean old lady who yelled, treated everyone badly, pissed in her pants, and then farted on them 2 or 3 loud raspberries as they tried to clean her up.  Leave it to me, right? and they placed me in the very furthest chair from
the restroom.  So I got a workout ( and a floor show).  What more could I ask for??

Love to all,  ALAN
Title: Re: Just checking in
Post by: mitch777 on January 11, 2015, 05:38:21 pm
Alan, It's good to hear from you!

30 more treatments? Oh my!

It's good to know you have a good personal nurse. I'm sure he provides the best of care.

Too bad about the cranky old lady but it must have been amusing anyway. Just a thought but I would be buying a nice collection of underwear for future floor shows. Can't be seen wearing the same thing down the runway to the bathroom.  :)

My thoughts will be with you during your treatments.

hugs,
Mark

Title: Re: Just checking in
Post by: aztecan on January 12, 2015, 11:18:27 am
Alan, it was so good to hear from you.

I am glad you are getting good care, especially from the "built in nurse." ;)

Sounds like the old lady was a trial for your patience. Some people are just like that, I guess.

Lots of warm and healing energy heading your way.

HUGS,

Mark
Title: Re: Just checking in
Post by: Miss Philicia on January 12, 2015, 01:31:46 pm
You really have a long road ahead of you Alan. I'm so very sorry you are having to deal with all of this. Wishing you the best.
Title: Re: Just checking in
Post by: Wade on January 12, 2015, 09:22:30 pm
Alan,
Your a tough one !
You still manage to keep your sense of humor,
That's a rare quality.
My thoughts are with you , Wade
Title: Re: Just checking in
Post by: BT65 on January 13, 2015, 01:38:49 pm
Alan!  That treatment sounds dreadful.  I'm glad you're not by yourself and I hope those side effects can be controlled.  I love you, you have my number.

Betty
Title: Re: Just checking in
Post by: Buckmark on January 13, 2015, 04:53:32 pm
Alan,

Your treatment sounds so very rough indeed, especially as it sounds like they are alternating / intermingling your chemo and radiation.  In my case, having them separated by a couple of months sounds easy by comparison.   I'm glad your "built in" nurse is taking good care of you.  Hard as it may be, keep pushing those fluids -- it will protect your kidneys.

I have a couple of tubes of Miaderm (http://"http://www.miaderm.com") left over from my radiation treatments.  It's really good stuff, and helped sooth my skin during and after radiation.  I'd be happy to send it to you -- you may wish to ask your physician or radiation tech about it.  Feel free to PM me.


Lord there are SO MANY people on Chemo.
...

That's exactly what I thought when I was having chemo:  look at *all* these people.  Most I found to be very nice, and a few (as you experienced) not so much.  My thoughts are with you.

Hugs,

Henry
Title: Re: Just checking in
Post by: wolfter on January 13, 2015, 11:09:12 pm
Thanks for updating us as I've been concerned.  It all sounds dreadful but you're a fighter.

Title: Re: Just checking in
Post by: AlanBama on January 22, 2015, 03:47:28 pm
Hello everybody, from Cancer Land....that's what it feels like.  It's a 24-7 job.   Takes two of us to manage my care and all the various 'treatments' I am supposed to do.

After tomorrow, I will be one-third of the way through my radiation treatments (11 out of 33).  Yay!    We saw the chemo doctor Tuesday; I like her a lot, but she is a very BLUNT person.  She will tell you how the cow eats cabbage, and doesn't paint a pretty picture for me over the next few weeks.  That's ok, I'd rather prepare for the worst, and if it's not that bad, GREAT!  My next chemo is Wednesday the 28th.

One thing I'm concerned about:  she discussed switching me in the near future from Hydrocodone (liquid) to Fentanyl patches.   I was badly addicted to Fentanyl in the 90's; took me about 5 years of trying to successfully stop them.  The withdrawal was so unbearable for me.   So that is a concern/worry.

I've decided there IS something worse than having to take a boat-load of pills each day:   having to crush them up, and pour them into your stomach!  Plus, there are several drugs we have in liquid form.   Guess who's back on liquid Norvir?   I had prayed I would never see/taste/smell that mess again.....but hey, we do what we have to, right?

Love you all, thanks for the prayers and concern.   And thanks to Henry for helping me out with some great cream for radiation!

HUGS, Alan

Title: Re: Just checking in
Post by: mitch777 on January 23, 2015, 12:53:04 pm
Cancer Land sounds like the evil twin sister of Candy Land. Glad to hear you are 1/3 of the way!

hugs,
mark
Title: Re: Just checking in
Post by: BT65 on January 23, 2015, 09:48:12 pm
Oh Alan, I'm so sorry you're going through this.  You're such a tough person, yet so gentle.  I keep you in my daily anxieties, and am wishing you only the best. Liquid Norvir? Yuck!  Hate that stuff.  Hopefully we will connect via phone one of these days, instead of just text.  Love you!!

Betty
Title: Re: Just checking in
Post by: AlanBama on January 29, 2015, 08:30:07 pm
Love you too, honey.  Text me whenever you can..

HUGS, Alan
Title: Re: Just checking in
Post by: leatherman on January 30, 2015, 12:23:09 pm
Guess who's back on liquid Norvir?   I had prayed I would never see/taste/smell that mess again.....but hey, we do what we have to, right?
OH NO! I swear to god when I read that line, I could kinda taste that taste in the back of my throat. Egads!

yes, we do "do what we have to do".  :-\  so hang in there! the half-way mark is just around the corner. ;)

hugs and love to y'all!  :-* :-*
Title: Re: Just checking in
Post by: Buckmark on February 01, 2015, 01:33:07 pm
Alan,

You are really in the thick of it now.  I suspect you now have another 5 radiation treatments under your belt since your last post, so you are just about half way.  I am glad your doctor is being straightforward with you.  My radiation oncologist kinda sugar-coated it, and I was pissed as I got toward the end of the 3rd week.

I'm sure the radiation effects alone are unpleasant, let alone the insult of having to take liquid Norvir.  I can understand your anxiety about pain medication, but you will need something, so have a conversation with your doctor about alternatives (you probably already have).

You are in my thoughts daily.  Keep your eye on the prize, and make sure to ring the bell and throw some confetti after your last treatment.  I don't know if your nurses / techs do this kind of celebration, but I've heard it is sort of a tradition (here in the US at least).   Also, they let me keep my radiation mask.  It is sitting in my closet.  Some day, I am going to destroy it appropriate (maybe with a shot gun).

Hugs,

Henry
Title: Re: Just checking in
Post by: wolfter on February 02, 2015, 12:43:27 pm
Liquid Norvir..how awful and you have my sympathy.  I just got off the pill form as it was horrible.  I should have remembered my previous experience with it.

sending hugs and positive thoughts buddy.

take care and kick ass.
Title: Re: Just checking in
Post by: AlanBama on February 07, 2015, 06:01:42 pm
still kicking ass; just need help lifting my foot to kick it!  lol

I agreed to go on Fentanyl patches, we started at 25 mcg.  It is already taking a little of the edge off the pain.  Even toothpaste burns.  My mouth is in bad shape now, and I'm taking very little orally, so thank God for the PEG tube.  I'm having an ultrasound of the abdomen Monday (to see if there's an alien in there?) to make sure I don't have fluid in my abdominal cavity.  My partner tried to explain AIDS gut to the oncology docs, we think that's all this is.  Yes my belly is huge!  I said wow I hope there is some fluid there to draw off!  But I really don't think that will be the case.

Will let you know!  Love to all,

Alan

PS to Lis, thanks for calling me honey but I can't phone you back! I cannot speak right now, my voice is GONE.  Please email me if you can!  love you!
Title: Re: Just checking in
Post by: BT65 on February 07, 2015, 07:27:49 pm
So glad tthe pain is subsided, even a bit. You're in my thoughts and prayers daily sweetie. I love you!

 Betty
Title: Re: Just checking in
Post by: mitch777 on February 07, 2015, 08:22:19 pm
You're in my daily thoughts too Alan. You really are an inspiration.  :-*
Title: Re: Just checking in
Post by: aztecan on February 08, 2015, 07:02:52 pm
Hey Alan,

Just thinking of you and thought I would just send some (((((HUGS))))

Mark
Title: Re: Just checking in
Post by: wolfter on February 09, 2015, 10:58:58 am
You're in my thoughts Alan.  Continue  to take care of yourself.

hugs
greg
Title: Re: Just checking in
Post by: Buckmark on February 24, 2015, 01:55:13 pm
Still thinking of you, Alan.  I think you my be at or near your last day of radiation, if my calculations are correct. 

*hugs*

Henry
Title: Re: Just checking in
Post by: Wade on February 24, 2015, 02:21:46 pm
Alan,
I too hope you are just about finished with your TX ,
Also that you get some relief ,and your mouth heals up
So you can sink your teeth into something big an juicy !
All my Best ,Wade
Title: Re: Just checking in
Post by: Theyer on February 27, 2015, 05:23:25 am
Dearest Alan , fentanyl patches are my best friends , seriously honey buns take every pain killer there is plus some relaxers like Valium all and everything they prescribe to lessen the hell off this , I only drew the line at chemicals from the friendly ward dealer , how ever grass tea is easy to have on the ward and if a medic takes a sip from the vacuum flask it's stored in , well thou shall not steal.
Kisses & hugs
Michael 
Title: Re: Just checking in
Post by: AlanBama on March 22, 2015, 05:56:41 pm
Hello, sorry I haven't written anything; it's inexcusable, really.....I MADE IT through all my treatments; did very well, in fact.   I didn't have to stop, or miss for any reason; no blood transfusions, no red or white cell count problems....just low sodium.

I somehow (stupidly) thought that if I could just make it through those awful treatments, I would be o.k.   The hard work has really STARTED once the treatments stopped.  My healing is moving at a glacial pace, and I hate it.   I am an impatient person anyway; but this is nuts.  I still can't eat, can't speak very well; have chills and mild fevers, and awful night sweats.   I'm back to sleeping on beach towels, like in the 90's.  It just seems I can't get over the "hump" and get things moving in the right direction.  My partner and my family say that they do see improvements, and I agree that my strength has improved.   I just want to be ME again!

On a sad note, my best friend of 38 years died Thursday, after a long battle with colorectal cancer.   We knew he was in very bad shape, but still it came very suddenly.  I know he was just tired of it all.  He didn't have any insurance, was dependent on the "system" and it failed him BADLY.  They wouldn't approve him for Medicaid, because they discovered he had an IRA at an old job, that was worth about $3 or $4 thousand; he really had not even considered that.   He was cared for by the charity program at St. Vincent's hospital in Birmingham; after several letters from his doctors, he was FINALLY granted SSD.   He was waiting to start his next round of chemo, after Medicare kicked in, which would have been next month.  He didn't live to see it.  He turned 58 on Wednesday, and died the next day.   My life's going to be very different without him; we talked on the phone every day, for as many years as I can remember.  I am thankful his pain is over.
The poor guy was existing with Stage 4 rectal cancer, taking 2 loritabs a day for pain.   It's all he could afford to buy.  I just think it's criminal, that someone should have to suffer in such a way.

Much love, and many thanks to all of you,
Alan
Title: Re: Just checking in
Post by: BT65 on March 22, 2015, 07:47:03 pm
Alan, it's good to hear from you though I'm sorry about what you're going through.  I would have thought you'd start feeling better once the treatments stopped.  Did the doctor give you a possible timeline for feeling better? 

What happened to your friend is criminal.  Someone should be held responsible, or several people.  The system should not be able to get away with that (whoever made the decision to turn him down).  It's disgusting.

I hope you feel better soon.  You're still in my prayers.
Love you-Betty
Title: Re: Just checking in
Post by: mitch777 on March 22, 2015, 08:12:58 pm
Dear Alan,

My heart is breaking for you for the senseless loss of your best friend. As Betty said, it's criminal. It makes my blood boil. I'm so sorry for your loss.

I'm glad you gave us an update as you never have left my thoughts sweetie. I can't imagine what you have been through or what you are going through but I do know you are a surviver and will get well.

Having this grief at this time doesn't help.

I just can't give you enough hugs or words.

Mark

I just read your post to Kenny and could not stop my tears. Please take good care of yourself Alan.
Title: Re: Just checking in
Post by: aztecan on March 22, 2015, 10:54:43 pm
Alan,

I know how frustrating it can be during recovery, especially from such an experience as you have had with your treatments.

Please be patient with yourself.

I am outraged at what happened to your friend. It also makes me feel powerless knowing there is nothing I can do to help.

Please know you are in my hopes and prayers and that much healing energy is being directed toward you.

MANY HUGS (not enough but all I have right now)

Mark
Title: Re: Just checking in
Post by: Miss Philicia on March 23, 2015, 10:12:37 am
Oh Alan, I'm sorry things are moving so slowly for you and know you must be frustrated. Surely they will begin to improve for you, it's just a very hard entire year.

That's so outrageous and infuriating what you describe as the end circumstances of your best friend. Nobody's life should end with such misery.
Title: Re: Just checking in
Post by: Buckmark on March 24, 2015, 06:05:16 am
Hello, sorry I haven't written anything; it's inexcusable, really.....I MADE IT through all my treatments; did very well, in fact.   I didn't have to stop, or miss for any reason; no blood transfusions, no red or white cell count problems....just low sodium.

Getting through treatment so well as you did is quite a triumph -- and quite extraordinary!   You should be proud.  My treatment was interrupted because of low blood counts, pneumonia, staph infection, blood clots, etc.

Quote
I somehow (stupidly) thought that if I could just make it through those awful treatments, I would be o.k.   The hard work has really STARTED once the treatments stopped.  My healing is moving at a glacial pace, and I hate it.

Ah, you have discovered the dirty secret that doctors usually fail to tell cancer patients:   in many ways the hard work and hard times for cancer patients come AFTER your treatment.  They probably don't tell us this because treatment is hard enough to get through.  But at least during treatment you are following a regimen and have a specific goal to achieve.  Once treatment is conquered, you get to deal with the uncertainty of healing, post-treatment side-effects, and follow-up tests and scans to see that your cancer is in remission (and to check on any collateral damage).  Not to mention trying to put your life back in some semblance of normalcy, whatever that is.  When you can, I strongly recommend you reach out to a support group of cancer survivors (most cancer treatment centers have one or know of one -- ask the social worker).  Just like with HIV, it helps to share your experiences and know you are not alone.  Since your voice is dodgy right now, an online community like this could be helpful (not that anything could be as fabulous as poz.com  ;) ).

Quote
On a sad note, my best friend of 38 years died Thursday, after a long battle with colorectal cancer.   We knew he was in very bad shape, but still it came very suddenly.  I know he was just tired of it all.  He didn't have any insurance, was dependent on the "system" and it failed him BADLY. 

I'm so sorry for the loss of your friend -- and for how poorly he was treated.  38 years of friendship just can't be replaced.

Things will get better, but just more slowly than you want.

Hugs,

Henry
Title: Re: Just checking in
Post by: Jeff G on March 24, 2015, 10:56:33 am
I'm sorry for the loss of your friend Alan . You are one of the toughest people I know and I am amazed at how you handled everything you have been through . You were up and laughing with me just days after your surgery and your biggest concern was that you wanted me to let people know you were OK . Hugs, Jeff .

Title: Re: Just checking in
Post by: wolfter on March 30, 2015, 12:59:22 am
I am thinking about you and apologize for not responding sooner.  How are things going of late?  Are you close to being able to have a normal diet?

take care buddy
Title: Re: Just checking in
Post by: heartforyou on April 01, 2015, 03:50:12 pm
Dearest Alan,

So sorry for your loss. We have lost so many things and friends in our lives...... And everytime we suffer another loss the pain returns.

I hope your heelth will improve with spring beiing here.

Sending you healing love,

Herman
Title: Re: Just checking in
Post by: AlanBama on October 15, 2015, 12:58:51 pm
OCT 15, 2016

Hello friends,

First of all, let me apologize for being an 'absentee member' for quite awhile now.  I certainly love and care about all of you as much as I ever have, it's just that my life has been re-arranged for me, thanks to Cancer.

Brief summary:  I've been dealing with Stage 3 Cancer of the head and neck since this time last year, for carcinoma of the right base of my tongue.   I had radical neck surgery, chemo, and 33 radiation treatments.   I have been on a PEG feeding tube since Nov 7, 2014.   I have worked very hard to recover, and get back to eating normally.

I received some tough news Tuesday; actually, I knew it before they told me, but to see it on paper, hear them say the words, and actually SEE the radiology report and film is a blow.   It seems that despite my best efforts, I am going to be on a feeding tube from now on.   Pretty much anything I eat or drink aspirates into my airway / lungs.   The radiation destroyed my epiglottis, the flap that closes so food goes down the "right pipe".  Being a LTSer of AIDS has not helped my recovery, as you can imagine; the G.I. doctor told me that "if it was a person who had a normal healthy immune system, and well-functioning lungs, we would probably tell them to go ahead and keep trying to eat what you can; but in your case, your immune system is compromised; half of your diaphragm doesn't work (due to severe shingles in 2007) so your breathing is not really normal.  You've had numerous cases of pneumonia, and it's not worth risking getting aspirational pneumonia just by trying to eat".

I've shed my tears, and am trying to make my peace with it.   Thank GOD I have an exceptional partner, Layne, who is a retired RN.  He has taken excellent care of me, during this whole ordeal.  I couldn't do it without him.   So it's not just MY problem, it's his too.   He has to eat every  meal alone.  He mixes up and prepares my infusion bag of hydration for every afternoon, and my bag of liquid nutrition (similar to ensure) for every night.  I am tethered to an IV pole and a pump from about 3 to 6  pm each afternoon, and from 11 pm until 7 or 8 am. every night.

The implications of being an enteral feeding patient are many.   There's the social aspect -- people don't know how to 'deal' with someone who doesn't eat or drink.
As for any kind of sex life, again, thank God for an understanding partner.   Imagine having a tube hanging out of your abdomen -- forever.  It tends to change your perception of yourself.  To say nothing of the physical and psychological effects.  Certainly, not the least aspect, is financial.   I'm a Medicare patient.  I have no supplement; I do have a Part D plan, paid for by the State, and receive many medications from ADAP.   I am in the Charity Care program at the Univ. of Alabama, where I receive all my treatment.  That covers the Medicare co-pays and deductibles, thank GOD.   But with the home health supplies, I'm on the hook for 20%.   Also, all the various and sundry items that go with dealing with enteral care.   Gloves, swabs, tape, etc.   All non-covered expenses.

OK I've complained more than enough, so I'll stop for now, and again apologize for not being more active in the group.   Since all this happened, I have joined a couple of head and neck cancer survivor's groups, and a group for Enteral feeding patients.  I will try to be better, about checking in.   Feel free to email me, anytime.

LOVE & HUGS TO ALL,  Alan
Title: Re: Just checking in
Post by: heartforyou on October 15, 2015, 01:34:02 pm
Sweet Alan,

I am speechless. What an ordeal you are going through.
And above all you are extremely courageous. Alan, I am proud of you.

But I can feel your pain. It is hard to read these lines.

I am very very happy to read your partner is close to you. I admire him too.

Please know I am with you. I am crying here for I cannot do much from here. I am here whenever you need someone to talk to Alan.

But I am also very angry for what this disease has done to you, over and over again. I so wished I could help.

Warm hugs and tons of respect to you guys,

Love,
Herman :'(
Title: Re: Just checking in
Post by: Jeff G on October 15, 2015, 03:57:05 pm
There is no sugar coating this … this just plain fucking sucks.

The only thing that keeps me from loosing my shit over this is I know Alan and I know his strength and determination and I know you will get thorough this with the love and support of Layne, sweet beautiful layne and your friends and family . About one of the worse things that can happen to a southerner is to take his food away … we will have to find better things to do now and expand our horizons.
Title: Re: Just checking in
Post by: Wade on October 15, 2015, 06:30:18 pm
Alan,
I'm having a hard time finding the words I want to write.
I read your thread again and you have been through so much.
You are one tough and determined man, my heart goes out to you both.
I'm glad you have so much love around you.
Never say never , one never knows what good things are around the corner.
I will email you !
Wade
Title: Re: Just checking in
Post by: OneTampa on October 15, 2015, 07:06:17 pm
Alan,

Like other Board Members my heart aches for you.

I hope I can see the screen and keyboard as I type through the tears.

You are a Soldier of Strength and Determination and a Precious Child of Earthly Spirit.

What a blessing to have your Partner Layne by your side.

Please know that you have and continue to make a profound and wonderful impact on all of us here.

I wish you the very best.

Love and Hugs,

OT

Title: Re: Just checking in
Post by: guitargal on October 16, 2015, 12:36:23 am
So sad to hear about the tube Alan. .. my friend with ALS has had one for quite a few years.  so glad you have a good partner, a caring partner, 

maybe you can wrap a nice silk, velvet or damask sash around your bod when you are naked and pretend you are a pirate or something?

best to you
D
Title: Re: Just checking in
Post by: BT65 on October 16, 2015, 08:39:33 am
God Alan.  That's a very, very tough situation.  You have so much strength. I would probably be ranting, every day.  You have my phone number, I'm here if you need to talk or text.  My thoughts and prayers are definitely with you.

Betty
Title: Re: Just checking in
Post by: wolfter on October 20, 2015, 01:23:11 am
Alan, I'm so sorry.  Words escape me at the moment.  Like you, I've been absent a lot lately but this just pains me. 

My greatest energy is targeted towards you.
Title: Re: Just checking in
Post by: AlanBama on October 27, 2015, 08:07:59 pm
All the lovely messages have uplifted me greatly. Thank you so much, dear support group, for SUPPORTING me!!

I'm doing fairly well.  I'm worried about Layne.  This has taken a huge toll on him.  To begin with, his immune system hasn't been in great shape. He's a LTSer who can never get his T cell count over 200.  He's got his own share of health problems; we've both had some really nasty sinus and head cold mess going on.  The antibiotics they gave me are worse than the sinus problems!  Now my stomach has pretty much turned to water.

I'm hoping for brighter days ahead.  Wishing you all a very Happy Halloween!  It's always been my favorite holiday.  I didn't even get my decorations out of the storage room.  It's about all we can do to just keep functioning every day.

Love to all; your caring words mean so much to me!  Many thanks for brightening my life.

Hugs -- Alan
Title: Re: Just checking in
Post by: aztecan on November 04, 2015, 09:49:19 pm
Alan,
There isn't too much I can say, except please know you are always in my thoughts and prayers.

I know you are strong. You have been through more than lesser men could have survived.

I will continue to send as much positive energy and strength to you as I possibly can.

I send BIG HUGS to both you and Layne.

Mark
Title: Re: Just checking in
Post by: mitch777 on November 10, 2015, 06:04:10 pm
I couldn't say it better than Mark did.

More big hugs from me too.
Title: Re: Just checking in
Post by: AlanBama on December 21, 2015, 03:30:32 pm
Just wanted to wish all of you a Merry Christmas and Happy New Year!

2016 will just HAVE to be a better year for me!   All those who know me know my thing about even/odd years.   Most of the worst shit that has ever happened to me over the years has happened primarily in odd numbered years.   True, my cancer diagnosis and surgery was technically in 2014 (the end of), but the brunt of it all has been in 2015.

I want to wish all of you Happy Holidays, and may 2016 be a brighter year for us all.
Thanks again for all the love and support you have shown me this year; I don't think I could have made it otherwise.

LOVE from Alan
Title: Re: Just checking in
Post by: BT65 on December 21, 2015, 05:29:42 pm
Merry Christmas to you also my friend. Love you!

Betty
Title: Re: Just checking in
Post by: Jeff G on December 21, 2015, 06:41:26 pm
Merry Christmas Alan … love you dearly.
Title: Re: Just checking in
Post by: mitch777 on December 21, 2015, 06:53:57 pm
Same goes for me Alan. Wishing you the best holidays and looking forward to hearing that 2016 will be you're year.
Title: Re: Just checking in
Post by: leatherman on December 21, 2015, 08:07:56 pm
Merry Christmas to you and yours!!  :-*

no matter how good or bad a year is, I always think it's good to be rid of it (I mean, 365 days is like forevah!). That gives us a brand new year for things to change, to be different, to happen! WooHoo! Here's to 2016!
Title: Re: Just checking in
Post by: wolfter on December 21, 2015, 11:32:43 pm
Merry Christmas and happy holidays to you.  I agree about the year though.   I freaking want 2015 gone!.

huge hugs buddy
Title: Re: Just checking in
Post by: Wade on December 22, 2015, 08:51:45 am
Merry Christmas Alan ! 
Here's to a better New Year  !!

XOXO  Wade
Title: Re: Just checking in
Post by: AlanBama on May 24, 2016, 03:02:36 pm
Apologies for not posting for so long.  I just don't come to the forums much these days -- pretty much visit with folks on Facebook.

I'm doing o.k.    On these questionnaires at doctors' offices that I fill out, and they ask "how would you rate the overall state of your health today?"    I check FAIR.

Nothing has changed much for me; I still rely on my Gastric tube for everything, both nutrition and hydration.   We buy those large cans of gatorade mix, because I go through so much of it.  For the first part of this year, I was able to swallow a little water, and even eat things like pudding and jello.   I've lost that ability now, and cannot even take a sip of water (without having a coughing fit).   So I rarely even try anymore.   It's just not worth the effort.

I've reverted back to some "90's AIDS behaviors" again.....mainly, adult diapers.
Yes, I now have to sleep in one.   At least I don't have to wear one during the day.  But at night, I just have no control.   People in my ENT Support Groups say it is sometimes common for this to happen to people who live on a strictly liquid diet.   It certainly chips away your dignity.

Layne and I are handling everything that comes at us; we may not handle it very well, and our house is certainly not the orderly neat home I once kept.....but we get by.   We do our best to manage our limited energy.   If we feel good, we try to get a few things done.   If not, we don't worry about it.

I still have a lot of bitterness and resentment, that my health care team allowed a lump on my neck (which we pointed out and complained about for over a year) to reach Stage 3 malignancy before they did anything about it.   But like so many other things in my past, what's done is done, there's no going back. We've stopped going to church (I can no longer take communion) and I guess you could say that we have both questioned our faith.   Pretty much the only person or thing we can depend on is each other.

I hope everyone is doing well; so happy that Jeff is settled and doing great in Palm Springs.   We miss him being in Alabama, but he did the right thing, and I am so proud of the things he is accomplishing.

Love to all,
Alan

Title: Re: Just checking in
Post by: BT65 on May 25, 2016, 07:11:09 am
Oh Alan, if I lived closer I would take care of your house.  I am so sorry to hear of you questioning your faith, only because I know how important that was to you (not because I am a big church person).  You have my number; anytime my friend.

Luv you bunches,
Betty
Title: Re: Just checking in
Post by: Wade on May 25, 2016, 09:11:10 am
Hi Alan,
It was great seeing a post from you!
You have a kind , brave and generous soul and I think not going to church will change that.  I'm not much of a church person either .
Many don't check in here any more because of facebook , so I miss alot.
I'm stubborn and have not joined , Im also very happy for Jeff , he loves P Sprngs !
I wish you and Layne the best and hope that things get easier for you both.

Best , Wade