better late than never!

It's been a couple of months since my last apt. with Dr. C, but I thought I'd post an update. I'm now "undetectable"!!!.. (that is viral load less than 48)Quite a bit better than the 669,000 I started at a year prior. my CD4 was 69, up from 10 Last June. even after all the chemo I had my T-cells have continued to increase! I now weigh... OMG... 169!! up from my puny 108 last April.

In March, I was let go from physical therapy due to the tone prohibiting much further progress And in April I was let go from Occupational therapy for the same reason. I had Botox injections on May 15th that have seemed to help significantly better than the first time in the hospital so I am in the process of being re-admitted to my outpatient therapy. Hopefully, things will pick back up for the recovery of my hand function... B and I walk between 1 and 1.5 miles a day, when I have the energy.. Sleep hasn't been working too well for me lately, with my docs not prescribing effective sleep aids for me... the clerk at this vitamin shop I buy supplements from gave me this stuff he says really helps with getting restful and productive sleep.. going to give that a try and see if it helps any. I'm getting tired of ineffectiveBenadryl and Tylenol PM type stuff.

I have my next ID apt. in June and if my CD4 is up high enough.. I will be taken off at least one of the prophylactic antibiotics. Im still on the Atripla, since it seems to be doing its job.. thank godness

I've taught one of my former students a couple oftimes since the January date.

And am finally confortable enough with my teaching abilitiees that I've approached one of the band directors that I used to teach for for many years about retuning to teaching. doing lessons from the hous, which has not ben very usefulin the past (parents don't want to drive the students any further than the school for lessons, even though it's only about 15 minutes away!)
Thankfully my disability check covers my half of the house payment each onth, so I will finally have the luxury of being picky about who I teach. rather than having to teach any and every student I can get.

I plan on taking students on a trial basis, and if they don't like me, they are free to find someone else, no hurt feelings and or aren't willing to do the work, the they are out so I can find someone willing to work and be dedicated.

Back in the Saddle Again

Wednesday, Jenuary28th, the six-month anniversary of my stroke: I did something I didn't think I'd be doning again, especially this soon. I taught again! A couple of weekends before, I was having a particylarly low time from not playing/teachin. So I contacted the parents of a couple former students That havebeen kind in keeping in touch with me through all of this. asking if their kids would honor me by letting me teach them one time before Solo & Ensemble ( for free, of course, as I'm no longer their primary lesson teacher and wasn't sureHow I'd handle it anyway. Plus, as I saw it, I'd owe them for the time, as They would be doing me the service of helping me feel like a eaxher again) These were two of my favorite junior high saxophone students fro last year, who were my most favorite students ever and both really talented players. The kind of students that made the whole week worth while amidst all the awful uncaring students who don't practice or care how they play. To have them back-to-back was almost too good to be true It would have been nicer if I coould have played during the lessons, but it was still so much fun that I was sad when the second student was heading out the door. But the experience put me in such good spirits for the rest of the week, My last set of labs are getting even better. Before my lastround of chemo, ( before Christmas my CD4 was 51 and viral load was 99,. After chemo at the beginning of January, iCD4 had dropped to 43 but still up from the labs October and my viral load is down to 49( just one point awat from "undetectable"). So now that I'm done withthe regular full chemo treatments, my numbers should continue to improve

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.