good news

Well, I was discharged from the rehab hospital on November 1stbut three weeks later I had an infection in my picc line where I get my chemo through. I had to go down to the Medcenter to the Emrgency room and be admitted for a few days to get the infection taken care of. While there, My oncolgist had me go ahead and do an MRIto see where we stood after 5 rounds of chemo. the day of my discharge He came in to tel me that they could see no more tumors in the MRI. so in a couple of weeks we go to discuss my mainteance chemo treatments to keep me in remission. every week or so I seemm to earn new bits of iformation about my initial diagnosis. . A few weeks ago I learned that my biopsy had been sent to Californiabefore going toM.D.Anderson and coming back as having lymphoma. I knew initially that the neurosurgeon wasn't sure I'd survive the craniotomy but ths past Wednesday,learned that the original oncologist before I got transferred to get chemo only predicted that I had a couple of months. Before leaving the rehab hospital, I was having some bad neuropathy due to injections I had in my leg to relieve spasticity, so they put me on this supposed "great drug for neuropathy. I had been on the maximum dosage for a few weeks with no benefit what-so-ever. upon discharge, I started seeing an acupuncturist recommended by B's mom's acupuncturist. amd after three sessions, My neuropathy is gone. Now I'm seeing him to try to help with my arm/hand movement in conjunction with my outpatient therapy . And, as if the remission news wasn't good enough, While I was back in the hospital B brought me news that he'd found a long-lost friend that I hadn't really seen since the third grade that was back living in the Houston area. I had given up hope years ago that I'd ever be communicating with him again. much less possibly seeing him someday

How I met the love of my life

Those of you who know me and B well probably know this story.. but I've been thinking about it much lately and thought I'd make it a post:
I was a senior in high school and desperate for some sort of social outlet for interacting with other gays and lesbians. When I read about the Houston Pride band in a copy of the Gay and Lesbian Yellow pages, I, thought, " Hey, I'm, a band geek What better way to spend my time."

'

.. That was a mistake; but that is for a different post...I had told the conductor that I played clarinet and alto sax so she could put me where they needed .me. When I saw B walk in with a clarinet bag, I knew I had made a mistake, as they needed me in the saxophone section. It was total love at first sight for both of us. The next week I left my sax in the boot of my car(Probably not the smartest thing to do in that part of town) claiming that it was in the shop but offering to join the clarinets.

So I got to sit right next to that clarinet guy and we struck up a conversation, taking every slight break to talk the whole night. Ithink we talked in the parking lot well after everyone else had gone.. we had traded phone numbers and email addrsses and he had convinced me into getting AIM. That nigh we were talking for hoursI was in love and this time I knew it was Rreal, Jnot just somepassing fancy. That weekend he was at my house to visit and play duets the lfolowing week we skipped rehearsal to have some alone time and we officially became a couple . I was elated. I new i was finally done with little one/two month mini relationhips, and would be with him forever. Shortly after I found oout I had HI,Ispent sthe better part of a night cryingbecause I thoughtI'd lose him- either because I'd get sick and die before I was ready to lose h,,m Or he'd decide He couldn't live with the whole HIV thing and decide we needed to separate. As wonderful as B has been through this whole lymphoma and rehab ordeal, I now Know that i was just being stupid. He's been my source of strength and support and sanity. Were he not in my life, I likely would have given up hope at the beginning of August.we'll have been together eleven years in April f 2009and love him 10000times more than I did the day he said he'd be my boyfriend. I wouldn't trade a day o our relationship for all the money in the world

hillbilly EnglishARGH!

If I have to listen to much more atrocious hillbilly grammar, I'm going to scream!
Man's name is glen. Wife calls him Glian or glee-an-Like Liam, but with an N at the end and a G in front

Let me give you the highlights: Wife talking to Nurse about some apparatus they might give her husband." Oh yeah, I seen that"
Son to dad upon arrival of visit:"Beau and Jennifer was gonna come see ya
Son to father about hurricane damage,"You know that seeder tree( cedar tree) in yer front yard? It got twisted up by the wind and a bunch a limbs come down
Daughter calls DadDayud and "on "is"aw-un".

I know I don't a;ways use perfect grammar, but GEEEEEEEEEEZ! There's our wonderful public school system for you. Or, since the bad language seems to be home-grown, maybe the kids were home schooled

Life is wht happens to you while you're busy making other plans

Well, For those of youwho don't know, on July 28th I had a hemhorragicstroke . which left me without the use of my left arm and legand had to have a craniotomy on the 29th. . they * thought* I had Lymphoma,but results were inconclusive. so they sent the biopsy to M.D. Anderson,And A couploof weeks later it came back as"somekind of lymphoma"..Turns out it's Non- hodgkinsymphoma of the brain which is just a fancy way of saying a fairlytreatable brain cancer. after a while,II got transfered to a new location for my chemobecause no regular oncologists wanted to treat me having HIVon top of it. after two rounds of chemo, I went to my 4th hospital for b.rehab. .So far things are. going reptty well. I've done more intwo dayshere than in the past tmonth and a half at the other host.All tew therapists are veryy nice and not ibconsiderste task masters like some I've accomplished more in a couple of days here than I did in a month and a half at the first three hospitals. Of course they actually knowt hings here instead of the other therapistwho seemed like they were working from an introduction to basic therapy bookletThe first few after the srokeweeks were preetty hard. Lots of"wfhy did this

happen whenI thought my HIV therapy was going so well.but then I realised that this happened because my HIV had progressed so farand I decided like the whole Patient/victim post said. It's m,y faultthatI have HI,V so I don't have any right to complain or feel sorry for myself. That realisation reduced the mount of crying quite a
bit.
I still have my sad breakdown moments: usually when I don't get enough sleep., or towards the end of the week B has been so wonderful through all of this. He always helps when I have an accident and never complainsHe always gets me in theweheel chair and tries to get me outside for a bit in the morningsI'm so greatful to have hadhim there the night of my stroke: IIf he hadn't been there, who knows how long I would hav been unconcious eand I probably
wouldn't have gotten 911 called

Anyway, back to the theme I tried to set with my title, Before all this, B and I were planning a trip to London in the spring and I was starting to try practicing again to see if I could get back in shape to play in public again.I wanted to do one or two more recItals before I developed full- blown AIDS, or got seriously sickTeaching is on hold indefinitely, uill I atleaststart to get some hand movement back

OMG!!! i'm FAT!!!

I feel so fat right now.. and not the good type "phat"... i now weigh 145.. compared to 6 months ago i'm a pig!.. i used to be able to fit in a tight pair of 28-waist jeans.. if they were Levi's which run a little loose.. or 29-30's if they were tighter brands like Mavi.. but now I can't even get into a 30" Levi... :-(

Need to go to the Gym with B some i guess... I actually have a belly now, which I haven't had in 15-18 years.. :-( I feel so ugly... and pot-bellied... ick...

in June my insurance stopped covering most of the Atripla, which we weren't expecting.. so i had to fork out over $1200 and sent me and my mom into panic moke trying to to find out how we can get my meds covered by the state or something else.. but thing worked out and i'll be getting meds from the Atripla people for a few months..

B and I just got back from a week long trip to Iowa to visit his family.. Was NOT ready to come back to Houston Heat... time to win the lottery and buy a summer home..:-)

anyway.. enough about my vanity.. I go in Monday for my next labs..and will get results next Tuesday.. feeling good right now except for my body conciousness.

one more thing

I'd just like to say, i must have a buttload of good karma supporting me.  Many stories I hear from podcasts are of people having much higher CD4 counts than I have and getting full blown AIDS with only very limited life expectancies.. And here I am with virually no immune system still getting by.  

I don't believe in God or angels or any of that hooplah.. but something must be protecting me.  And all I can guess is i must have a buttload more good karma than I thought possible.  

Now watch, since I said that I'll probably be a gonner in a month's time.

C'est la vie.  eh?

reliving the past

another sleepless night. I did fall asleep for a little at first, but had a weird dream that woke me up and sent my mind racing.  

I Don't think i'm afraid of dying. It's not something I stress about or fear all my waking moments. I know that with my immune system so wrecked, i could get sick any time, and be in the hospital one day and gone a few days later.  It's something I have no control over and does no good worrying about it too much.   But at night, my mind keeps going over my past, how I could have lived my life differently, what might have happened had my earlier "relationships" continued and had I never met B.  I use the word relationships in quotes because they could hardly be called that.  

Being a gay teen, i had absolutely zero dating options in high school... I take that back, I had one dating option, but he was a friend, though senior year i found out through rumors that we apparently were dating.   

I don't want to get into the gory details of me sexual/emotional development on this blog.  That's not what it's for.  But anyway.. now on to happier subjects.  

last weekend mom and B and I went to a workshop by Legacy Community Health, a five hour class about HIV and AIDS.  You read that right.  FIVE hours.  with complimentary donuts/kolaches and blood tests to boot.  I"m sorry to say I didn't really learn anything during the class, except that i still need to put on a little more weight so I don't get cold so easily.  

Anyway, Thursday I got a call from the lady who did the class with my lab results.  I had no idea they were going to do that until they sent us down to the lab.. so it's kind of nice to nit have to wait until August.  All-in-all for someone who maybe had just been diagnosed with HIV and knew absolutely nothing about it, it would have been a very informative class.  

So, whoever they use for testing must have more accurate testing methods or equipment than Quest Diagnostics, because they were able to tell me that I have a whole 10 t-cells per cubic mL of blood, where before i only knew i had "less than 20" CD4.  SO I still need some help in the immune department.  But in the couple of weeks since my last visit with Dr. C  my viral load had dropped another 151 to 750. So the meds are still working.  Yea!

Well.. 6:30 in the morn.. starting to get light outside, so i should probably try again and get some sleep before the sun is up all the way.  getting my hair cut tomorrow (today) and then having lunch with mommy.  :-)

Well dangit.. i was thinking my CD4 would have been part of my test last week but i guess it was just Viral Load. But good news.. My viral load is down to 901 from 669,000. Dr. C said that treatment is normally considered a success if after 2 months the VL drops 10-fold which would have beeen 67000... so that much of a drop means that maybe by next month i'll be in Undetectable range. But now i have to wait another two months to find out about my CD4.

Official weigh in was at 134 pounds. Up 20 pounds from a month ago.. which is good and bad... it's the most i've ever weighed in all my life. But, i'm also going to have to start watching what and how much i eat.. Something i've never had to do before.
I can't keep gaining 5 pounds a week. I'll be a total blob in no time.

Dr. C thinks i should see a rise in CD4 next test at the end of July. And then, if it's high enough, I'll be ready for some vaccines that he wants me to have.

Victim or Patient

I read many blogs where people call themselves victims of HIV or AIDS. But I just don't buy it. I see myself as a patient, not a victim. A victim, to me, would be someone who was raped, or did their best to have safer sex all the time but still got infected or like Ryan White, a hemophiliac that was infected by tainted transfusion.

As much as I hate myself now for it, I did not play safe as a teen. It is no one's fault but my own. And I am not a victim. I have no one to blame but myself. I knew the consequences of barebacking but chose not to use condoms because I "didn't like them" - and now must face the facts. I don't expect pity or anything from others, and all I can do now is try to reduce the amount of suffering my loved ones feel should I get sick and die.

As much of an inconvenience as taking meds may be, (which right now it's not much of one) i will not complain. And should I be bed-ridden in a hospital in a month or 6 months or whenever, i will still be happy.

Had I been diagnosed 10 years ago, I might have started treatment immediately. By now I might have been a salvage case - resistances to most drugs and not many options left. Where being diagnosed late, i might have a higher chance of progressing to full blown AIDS, but i've had 10 wonderful years with my family and significant other that I love with all my heart - and might still have some more years to enjoy their company.

I'm sort of glad that my dad passed away in March. Now he won't have to watch should I die from AIDS in the future. I wish that B or my remaining family wouldn't have to live through that either.

How We're Coping

When I found out I was HIV+ it wasn't a huge shock.. I had been suspicious for a few years, back when we were still living in Conroe.  It was more a confirmation.  I know I should have gotten tested when I started to suspect, but I wasn't ready to face the financial burden.  Luckily, my health insurance has been really good on covering most of the first two rounds of Atripla.  We'll see what happens in the future.  Side effects of meds are much better than they used to be.  And i knew the HIV+ status isn't the death sentence that it used to be in the early days of AIDS.  SO i wasn't really scared of the meds themselves,  just whether I would be able to afford them.  I think B was more scared than I was and needed some reassurance that i wouldn't be gone in a few months.  But he seems to be more comfortable with the situation.  

Mom and sis are both doing alright.  Mom had sort of suspected as well, but when i told her, naturally it upset her.  But she's been a great help.  Sis has her hands full with a baby so we haven't had much contact other than an occasional phone call.  But when she found out she was a great help in finding links for possible options (charities, funds, med assistance, clinical trials links, etc).

Bringing you up-to-date

Hi friends,  I should have started this weeks ago when i found out my HIV status.  Nothing has been going on for the last couple of weeks so I don't really have anything new for those who already know.  As blood work is only every now and then, I probably won't be posting but to give updates on T-cell counts and Viral Load counts.  Or maybe I'll occasionally have a rare epiphany that I decide to write about.  So i expect posts may not be very frequent.  I'd prefer not to expose my real name or the names of my doctor or family members just because I like to keep my privacy and who knows who comes through these blogs.  From what I remember from grade school/high school, I tended to ramble and write in a stream of consciousness-style.  But hopefully it's not ALL over the place and hard to follow.   So here it goes.

So for those of you who know me that don't know.  I wish I could have told each and every one of you in person.  But this is the only way for some of you.  As you can probably deduce by now, I'm HIV+.  I found out in early April '08 when I went in to my primary physician due to a lung infection i was fighting for a few months.  My GP asked if i would consider the test and I was going to ask about it anyway due to some other health problem i had back at the end of 2006 that they never could figure out what was wrong.  Then this new infection.  

My GP referred me to an Infectious Diseases specialist and later that same week I was in consultation with the new doc (I will call him Dr. C from now on).  Two pages of blood tests and a week or so later i found out how bad it was.  My CD4 count was "less than 20" (normal healthy person is can vary between 800 and 1200), and my viral load (or number of copies of the virus per milliliter of blood) was really high at about 669,000.  Dr. C suspected I've had HIV for about 10 years, which is what I figured when I was told i was Positive,  as that was the last time we got tested due to a scare from a past encounter I had that got in touch with me to tell me he found out he was positive.  Because my CD4 was so low, Dr. C put me on Azithromycin and Bactrim for prophylactic  purposes.  And once the results of one of the tests came back to determine if the strain of HIV in me had any resistances, i was prescribed the HIV drug Atripla.  The first one pill/once a day multi drug regimen on the market.  I've been on the med for about a month now and I go in after Memorial Day for my next round of labs to see what's going on with my CD4 and Viral Load.  And June second is when I will get results from Dr. C.

So far things have been pretty good.  I was worried about my partner (B from now on) when I told him i was HIV+.  For a couple of days I was afraid we were done for.  But he's been great, as have my family and friends that i've told.   When i started on the Atripla i had a week of severe fatigue.  I could barely get out of the bed and barely do anything.  But the following week started to feel better.  And now i've been going along all day this week only getting worn out towards the end of the evening.  I've been eating like a hog... which is better than the way I've been eating the last few months or even the last couple of years.  Since my last appointment on the 5th of May I've gained about 10 pounds or more.  Won't know the official weigh-in until the 2nd since the nurse does the quick fully dressed weight instead of actual weight.  

I've had very few problems with the Atripla, and i'm happy about that.  It's a bit annoying in it's effects where if I have to get up in the middle of the night to go to the bathroom, it's like I'm walking in a straight line but someone's giggling the room around.  And I have vivid dreams, but not nightmares.  But come morning, i always feel fine.  So it's been a relatively uneventful experience.  Which is better than I can say for other experiences I've read about of people on other meds.  I just hope Atripla is effective in me and that it's a long time before my HIV build a resistance to it.  It's expensive enough on alone.  If I have to buy three or four different meds each month, that would get out of control.  I'm already trying to find drug assistance programs that I might be able to qualify for to help cover the $20,000 a year cost of Atripla.  

In case you're wondering.  B is still negative after we've been together 10 years.  I know we were worried that we would both be positive but his test was negative.  A giant weight lifted off both our shoulders.  I wouldn't have been able to live with myself if I had given it to him as well.  I know the rapid tests are supposed to be 99.8% accurate but I still hope he'll get a full blood test sometime just to make sure.