Fighting The Dragon

This is a copy of a post I made today on the Hep C board on the website for The Grateful Dead's bass player Phil Lesh located at http://www.phillesh.com.

Well here I go on a journey I wasn't expecting and really really don't want to go on. But I'm already on the path and as I've always said "if you can't go over something or under it or around it then the only way is to go through it" so off I go. Seems I tested positive for Hep C about 2 years ago. Don't know for sure how I got it and it doesn't matter anyway the end result is still the same. Got no one but myself to blame and all that crap. So we've been tracking my numbers since I tested positive, hoping I might be one of those rare lucky ones who just beats it without treatment. No such luck... after a few minor drops the VL started climbing like my liver was Mt. freaking Everest and it HAD to make it to the top before winter set in. Annoying little bastards. If I could I would get a shrink ray gun and shrink myself down to their size and go in and kick their butts myself but I digress... We had good reason to hope I was going to be one of the lucky ones because I am a long term survivor of HIV (I got it back before it even had a name) and have a history of surviving and thriving through things that normal people don't. Great - so I'm not normal. How very wonderful lol. Again I digress. I do that a lot. Anyway... bottom line is the time has come and it's time to start THE TREATMENT. Ugh! Peg Infuron once a week and a bunch of pills every day (like I don't take enough freaking pills every day as it is because of the HIV). Swell. High probability I'll feel like crap for a couple of days after the shot EVERY FREAKING WEEK FOR 48 WEEKS. Oh joy! High probability my HIV numbers (which have been undetectable for years and years now) will go FREAKING NUTS! Wow... this is sounding more and more enticing all the time ain't it? Pretty good chance that the treatment will mess up my thyroid and other important organs I might be wanting to continue to use in the future. Yeeeehaaa! Decent chance that my hair may fall out too thanks to the treatment. AHA! I got that one beat... I ALREADY SHAVED MY HEAD!! SO THERE! NYAHHH...

The truth is that the chance of success with this treatment is not all that great even for healthy people... for a LTS of HIV (that's Long Term Survivor of AIDS for those of you who don't know - aka known as "F*CK AREN'T YOU SUPPOSED TO BE DEAD DUDE?") the chances of success are statistically very low. But like I said I've beaten a lot of odds this is just one more uphill battle I have to fight. The one thing I learned early on when I found out I had HIV was that your mental approach to things makes all the difference. I BELIEVED I would beat it and I did. All of my friends at the time who tested positive believed they would die. They all did. Every last one of them. I believe that I will beat HEP C just as I have beaten HIV (as well as it can be beaten anyway). To quote my boys "I WILL GET BY I WILL SURVIVE"

Despite that belief though I admit here to a group of people that I don't even know (even though in truth that's not entirely true - we have probably danced together and smiled to one another at show after show and in some ways our souls have touched) something that I can not admit to those closest to me - I am scared as hell. I think that however is a normal and healthy response and it won't keep me from the battle ahead. Worst case scenario is the side effects are so bad that I can't take it and I quit the treatment and put up with the side effects of the HEP C until some of the new treaments become available. Best case scenario is a year from now the treatment has worked the HEP C is gone my HIV is still undetectable and I'm back to the good life again.

But wait! NO LIE HERE - as I am sitting here writing this I get a call from my GI guy (he's one of the best and I'm lucky to have him treating me)... he's gotten the results from some tests I did last week (I've got a mental block against what they were named but it involved the consumption of a large quantity of that lovely beverage BARIUM and if I ever catch up with the douche who came up with that stuff he's gonna pay dearly...) and the results weren't so great. Aside from confirming that I am "full of shit" (something my friends have often asserted about me) the test results also indicated that I may have gall bladder trouble and it ("it" being the gall bladder") may have to come out before we can begin the HEP treatments. I don't know why but my response has been an hour of laughing non stop and marvelling at the absurdity of this all. I mean I have never been a drinker (which isn't too say I haven't had a drink once in a while or been drunk a couple of times but those times have been VERY rare in my life). I've never been an IV drug user. So what kind of sick joke is this that's being played on me here eh? I get it... it's funny but jeeeeez.... enough is enough already. I'm fairly sure the uncontrollable laughter I am experiencing is at the very least a sign of hysteria if not an indicator of the beginning of a full blown mental breakdown but I'm seeing enough doctors right now and there's no more room on my schedule for any more doctor appointments or any more space in my belly for any more pills. They'll just have to deal with the psychotic laughter...

Oh well... let the battle begin. I'm up for it. I just hope this stupid little virus knows what it's up against.

To all of you who are on or have already been down this path you are my inspirations and my heroes... to those of you who are at the start of this battle let's have at it... time's a wasting and time is something that should never be wasted. We can be each other's strength and the one's who have gone before us can mark our goaline and cheer us on to victory. We can all slay the dragon before us if we just believe and never give up.

Peace and thanks to you all for being my friends and family without ever even realizing it.

Oh and special thanks to Phil for creating a place like this for freaks like us... get well bud I need to see you and your friends playing again SOON!! In the early 90's before Jerry passed there were times when literally the only thing that kept me alive was knowing the Grateful Dead were coming to RFK and I HAD to be well enough to see you guys play at least one more time... your music revitalized me (and so many others )then just as it does now... so thanks for keeping me alive!