I am reminded that AIDS isn't the only thing in my life...

[tcellsnaction]

My dad has been battling cancer and its effects now for nearly 2 years....it seems that like clockwork, this time of year has brought bad news....He has had most of his kidneys removed, cancer of the sinus, gone through the chemo and radiation (yikes! and I think I have it bad with fuzeon...) and now!!!!! drum roll please!

He has to have a feeding tube inserted permanently because he is aspirating, and must decide in a few days about dialysis because what is left of the one kidney is failing fast....I know my dad and he has already said that he won't go through radiation and chemo again....so I am just holding my breath about the 3 times weekly dialysis routine.....combined with the feeding tube...

It kinda makes me a bit selfish, always focusing on hiv because it is such a personal part of my own reality, but the cancer is a reawakening of the impending loss of another incredibly empowering part of my life....

[GSOgymrat]

I'm very sorry your Dad is going through all this. It does put things into perspective.

[tcellsnaction]

I appreciate your support....

I found out at work today and have kinda been a mess....but know that it's something else I cannot control....

I have to stop to catch my breath because I start having anxiety attacks and become overwhelmed with the thought of it all and must not start crying at work....and be become one of Arnolds "Girlie Men"...lol (at least I can still laugh at times...)

Thanks again....

[CaptCarl]

Action,
  Your posting is a timely one. I found out last week that I have cancer in the liver, though I do not know exactly what it is called. I have a meeting with an Oncologist and a surgeon  next week. This has been coming for awhile, but it's arrival still threw me for a bit of a loop for the first few days, but I'm cool now. Mostly. It is too easy to lose sight of the fact that HIV is not, and should not be the definition of who we are. It is a PART of us, but not ALL of us. I commented recently to my partner Norm recently, that why do we always assume that when a gay man dies, it is because of AIDS? "But I didn't even know he was sick" is a commonly heard phrase, when the death of a friend is made known. When you have to tell them that is not AIDS-related, watch the expression of surprise on their faces. I try not to think like that, but do fall victim to it every now and then too. I imagine the issue becomes a bit cloudier on a situation like mine. After 19 years of being positive and asymptomatic, along comes something else entirely and kills me. Not quite the Proverbial Bus, but close enough I suppose.... Thanks for the thought-provoking thread!
   Capt.Carl (who is planning to have his liver chrome-plated and used as a doorstop, figuring if it can't be useful, at least make it pretty)

[tcellsnaction]

Thank you for being so wonderfully open and sharing...

You are so right...it can be easy to fall into the assumption network and then get a wake up call.  Hopefully we don't hit snooze and oversleep.

I am truly sorry that you are facing this, but know it is comforting that you have your partner for support and like myself have a sense of humor still....my own liver functions are rather high and the doctors are concerned and I just tell them I live down the street from Safeway and will get another one if this one becomes non-FDA approved.

HIV is a part of me....no doubt....for 19 1/2 years and for so long it has been my lifeline practically with intense advocacy, fundraising, etc...I put so much aside trying to stop at least one other person from having to live their mid-life crisis in their 20's or even earlier with a positive diagnosis...How can such a word that denotes delight be so devastating, not only with HIV but with other life threatening illnesses.  I never expected to live this long, and as you mentioned, am now seeing my friends face issues non-HIV related.

I also never expected to have to witness these life challenges that my parents are now facing....in addition to my father's latest revelations, my mother had a heart attack in January, triple bypass in February, and another bypass in January of next year...On the other hand though, I do feel humbled to be a part of their lives and witness the grace that they are displaying in the face of these adversities....

I only hope that the grace was something inherited....

[AlanBama]

Tcells, I'm sorry to hear about your Dad's worsening condition.   I hope you can be strong for him, I'm sure he needs you more than ever.

Carl, I am so sorry to hear your news!   Please keep us posted on the oncologist visit and let us know how things are going.

Hugs,

Alan

[CaptCarl]

Action,
   I too am dealing with issues with my fathers health, or lack thereof, and am somewhat surprised too. The both of us are, apparently, long-termers of a tedious amount of time. I was infected when I was 22, and they told me then that I would have 18 to 24 months to live. SURPRISE! I have utterly and totally failed to die. When I hit 44, I want to have a half -life party, because then I will have been positive for half my life. I want to have a mid-life crisis, but I just can't quite work up the enthusiasm for it. I came dangerously close to buying a Trans-Am convertible two weeks ago, which I would have palmed off as the mid-life thingie, but didn't. Quite some time back, in the early days of my infection, I realized that this whole mess boils down to just two things: Either this is going to kill me, or it is not. Ultimately, this is what it comes to, everything else is secondary fluff. The other half of this equation is this. If it is going to kill me, no point whining about it. No amount of screaming, yelling, and whining is going to solve or change anything. The only thing I can do is to figure out how to deal with it so that it doesn't bug me. If it not going to kill me, The only thing I can do, again, is to figure out how to deal with it so I can get on with my life. For myself, anyway, it really is that simple...
   The liver difficulty is caused by chronic Hepatitis B, you know, the one that's an easy fix for 95% of the population? Yeah that one! I  always wanted to be the member of an exclusive club.... I've never been in a 5% grouping before, unless you consider my high school grades, which were routinely in the BOTTOM 5%. I have this newfound sense of superiority! It feels great!! I got infected with the Hep at the same time as the HIV. Apparently the HIV accelerates the progression of the Hep, and cuts the time until it takes to make you sick in half. There is also no great wealth of info out there about the co-infection thing either. Most of the studies done and being done deal with HepC, which is a different animal entirely. I don't know what to expect at this point, but the Oncologist is a Hepatitis caused cancer specialist, and as I'm meeting with a surgeon at the same time, I would imagine surgery is in my near future as well. It's OK dude, scars rock!! Oh BTW, I decided that I should name my Tumor as this is the closest having a kid as I'm ever gonna be. I'm open to suggestions, so far Timmy Tumor is in the lead.
      Capt.Carl. (who isn't really a captain, but likes the lecherous sound of it)

[tcellsnaction]

Capt. Carl (btw....I always like men in uniform, but that's another thread...lol),

I can relate so much to your attitude.  I just had my 47th birthday and wanted to have a 19th birthday party, but life circumstance (i.e. my lover of 13 years breaking up with me) changed all that....oh well, I think a fabulous 21st birthday party is definitely in order now. 

When I was diagnosed the best they could tell me was 3-5 years, so throughout the years I have waited for the proverbial shoe to fall despite good health for most of the time...Naturally, each cold or flu that led to pneumonia and going to the hospital was a dose of the reality.  However, my concern which was so gay was to make sure that I looked good in spite of it all....lol..using the old phrase..."it's not how you feel, it's how you look."

Now, I am reconciled that I am not going to die soon.  Especially after being told last year that I had 2-3 weeks if treatment didn't work....nothing like weighing 106 lbs and being knocked over practically by the wind of passing cars to stimulate determination and revive my spirit of self empowerment.  Now, I actually have to worry about retirement (what have I been living the last 16 years?).  What do people my age do career wise after retirement....."Welcome to Walmart",  "Follow the Bouncing Ball for Lower Prices".  Yikes!

Anyways, we are all facing so many challenges that we never thought we would be facing in this lifetime.  I too have always wanted to be a part of an exclusive club....lol....and in the early days thought that being a long term survivor would be one...but now there is an entire civilization of us....THANK GOD!  I will give up membership in any other club to share membership in this very special group.

There is a new focus on the over 50 population and also long term survivors.....so perhaps we have the answers afterall through the way we face not only our challenge with HIV but also the challenges that others face through the natural (is anything natural these days?) of passing accelation of days.  I don't like the term "aging". lol...

I have had many friends challenged with HIV and HEP B.  I am sure that you have made some contacts already, or hope that you have anyway.  My friends now are doing quite well and I am grateful that they were able to endure the treatments when the time came....They simply faced each day as it came....knowing that with its passing a new day would come.  I wish the same for you....

[CaptCarl]

Action,
   By all means, have that 21st birthday party. After all, it isn't every day that a virus becomes old enough drink! If you ever get out to New Mexico, I'll buy it a drink. Tequila, of course!

[Andy Velez]

T, thoughts and prayers are with you and your Dad.

I'm glad you can talk about it here.

Big hugs,

[tcellsnaction]

Thanks Capt. Carl,

You bet....after living in Texas for most of my life, I think my T-Cells would love tequila...lately, I have been reintroducing them to the lime, salt and shot....with moderation of course...lol...after all I just want to show them a good time and not kill them...

Carl,

I appreciate your thoughts and prayers as well and am grateful for outlets such as this for people that don't know each other to become a sense of family and support outside the usual scope.....

Hugs!
Ray

[Eldon]

Hey Ray...

It is unfortunate and disturbing to hear the news concerning your Father. You and he are in my thoughts and my prayers. Sending good positive energy your way.



Happy Holidays!

[tcellsnaction]

Many thanks Eldon,

It is kinda rough when I actually start thinking about it.....but know that it's something else out of my control and just glad to be his son....and told him...I just wish, like everyone else does when someone they care for goes through challenges like these...would rather go through it myself than watch it happen to those you care for....i get how my parents felt when I told them about my HIV ever so long ago....

Where has all the time gone?  I don't know but am glad for the moments these days...   Another example why I really thrive on living with passion....