Monday, July 25, 2011

What does it mean ...

What does it mean that I've been working on the same bar of chocolate in my freezer for a month now?

And there's still a piece left.

Have I lost all sense of what's important in the world?


Thursday, July 14, 2011

Weellllll .....

Tuesday, I met with my liver doctor to discuss the 12 week blood test results.

The short version?  The treatment isn't working as we had hoped, but there's still a chance that it could work.

The longer version is this.  By this time my Hep C viral load should be undetectable.  It's not.  After the initial very large drop in viral load, the viral load has refused to go any lower.

The doctor's advice is to wait until week 24 to see if I'm what's known as a "slow responder."  If I am a slow responder, my Hep C viral load will have dropped to undetectable by then, and I will be on this treatment for an additional year, with the hope of a "cure."

If I do go on for another year, I will be taking a long, hard look at my empty wallet, trying to figure out how I'm going to pull another $4,000 out of my butt to pay for another year's treatment, and probably shedding a tear or three in frustration.  Thank goodness for my insurance, otherwise it would be MUCH worse.  Of course, it's also another year of side-effects, none of which are fun.

If I do not become undetectable by week 24, treatment will stop, and I'll continue to live with this disease until something better comes out, I die from liver failure, or I get hit by that proverbial bus.  There are two new medications on the market, but they are useless in treating my specific genome.  There might be another medication coming out, but if it does, it won't be on the market for a very long time.  The silver lining in this scenario is that my energy should return, the side-effects of the drugs will go away, and I can get back to doing all of the things I'm used to doing, but can't do right now.

If my liver continues to deteriorate, there is a possibility of a liver transplant, but that only comes when I get to stage 4 with complications.  I am currently at stage 3.  The whole transplant issue is complicated by the fact that I'm HIV+.  When my friend, Rae, was dying of liver disease and co-infected with HIV, there were only a couple hospitals in the country that did liver transplants on HIV+ folks, and there were very strict standards and many hoops to jump.  She wasn't able to get a transplant before she passed away about 5 years ago.  Her passing still hits me in the gut when I think about it.

I asked the doctor what the usual progression of the disease was.  After he hemmed and hawed a bit, I gave him a stern look, and told him just to give me a ballpark figure.  15-20 years.  I've been Hep C+ for at least 15 years, probably closer to 17.

When I first heard all this, I panicked a little bit.  I hadn't realized how much I had gotten used to the idea of expecting to live to a ripe old age of 75 to 80 or more.  It's funny how hope can insidiously lead to expectations.  So, after 21 years of being HIV+, and being  treated very successfully for that disease, dealing with the specter of living for only another 5 to 10 years is raising its ugly head again.

It's a bit of an emotional ride, let me tell you.

I remember when I was first diagnosed with HIV, the phrase, "don't worry about it, you could also get hit by a bus tomorrow" was said all the time.  Either I said it or the people around me said it.  I guess it was a ward against the fear that permeated my life (and many others) at the time.  I remember how angry and grief-stricken I was for a long time.  I also remember that I didn't handle that stress well.  What I remember the most is that I didn't think I would live past 30.

Last Groundhog's Day, I turned 43.

I got through all that, and here I am, still very much alive, productive and living a full-life.

The trick for me is to not give into hopelessness.  You gotta pursue your life, right?  When it's time to die, it's time to die, before then, it's time to live.

So, I'm going to end by quoting Dolly Parton, and say, you'd "Better Get to Living."