Dear Family, friends, lovers, cousins, and countrypeople,
This is an update – or for those of you who haven’t heard, it will be a first date – on what has been mysteriously referred to as my “health condition.”
To explain, I have been legally disabled and otherwise pent up due to getting a disease of unknown origins. This all started about late October and has progressed indolently, so surprisingly slowly that many of you may be bored with how little this wordy update actually reveals.
The first question that seems to be on everybody’s mind is, was Dave a bone Marrow Match? Unfortunately, no. We were all hoping that my one full sibling could have his hips drilled hundreds of times with needles, but apparently they don’t do that anymore. I truly appreciate his volunteering to be tested, because it would mean a lot if someone in the family were able to do this for me (and bone marrow from a family member has a 20% lower chance of being rejected). Right now my parents and half-siblings are undergoing testing, each with about a 1 in 400 chance of qualifying. If none of them works out, we have found 11 people in the worldwide marrow registry who match my HLA type on first look, and they are now being tracked down, tied up, and held anonymously until they agree to further testing and sacrificing of essential blood components.
To bring people up to speed: I have something that is reluctantly called “Aplastic Anemia.” I say reluctantly because doctors are never sure at first. Its not a disease you can test for directly. More they arrive at the AA diagnosis by ruling out a bunch of other things and then, after scratching their heads a bit, they say “Well it looks pretty much like Aplastic Anemia,” becoming progressively more sure of themselves from that point forward. This process has been witnessed by us in no less than 3 doctors so far, from New York to Seattle.
What I do have for certain is low levels of my blood, in every part. That means my red blood cells have dropped to less than a third of normal, my white blood cells are at about half, and my platelets are just this side of spontaneous brain hemorrhage. Its really not too good, but doctors are keeping me alive by giving me other people’s blood periodically, which is adding to my preexisting multiple personality disorders. (No its not.) (Yes it is.) (No its not.) Some blood makes me feel like thrashing somebody, while other stuff makes me feel like a leeetle girl.
The other thing is that my bone marrow is splotchy, meaning there are places with a lot of activity, and others where my marrow is practically empty. Doctors don’t know why this happened, and all of the typical indicators (like exposure to benzene or other chemicals) seem to be absent in my case. But together, these things make a condition called aplastic anemia, and there’s a few things one can do about it.
The best is a Bone Marrow Transplant. Barring any family members qualifying, it will be about 3-6 months before we can shake anything out of the anonymous donors who are now being held in Guantanamo Bay. In the meantime, I get to be subject to one of the marvels of modern science, namely being pumped full of horse blood. This treatment would suppress my immune system even further, and hopefully stimulate my red blood cells to grow back.
This treatment, while reducing the time it takes me to run a furlong, will only work if my AA is caused by my white blood cells attacking the reds in the first place. And since the end of the cold war, doctors have seen this less and less. There are actually three ways Aplastic Anemia can be caused in a body:
1) A virus attacks your blood;
2) your white blood cells turn against you;
3) the stem cells of your blood become confused, and at the genetic or chromosomal level give up their jobs of turning into one of the three blood cell types, instead moving to New York to pursue acting.
Doctors have no way of deducing what process is causing my particular version of AA, except to try a particular treatment and see if it works. So the horse blood treatment (also known as ATG) is pretty much hit or miss, and has about a 40-50% chance of working in my particular case. The horse blood itself would only last 4 days, followed by steroids a while and another immunosuppresant for a total of 6 months. They check to see if its working after 3 months and cancel it if it hasn’t.
(Bonus paragraph, extra credit:)
Another option might be one of two experimental protocols being tested in pilot studies for Aplastic
Anemia at the National Institutes of Health in
Bethesda, MD (near DC). I have an appointment there
for March 5th. If I qualify, the treatment I get will
depend on how high or low my blood numbers are. If
they are lower (putting me in the “severe” category)
then I could get the Horse Blood along with some other
drugs, lasting for a total of 18 months. If my
numbers are high enough (making my Aplastic Anemia
“moderate”) then I would get to be part of a pilot
study involving Human Receptor Antibody IL-12 (I
think) which has been used a lot for people getting
organ transplants, to help them not reject their
organs. The docs know that the drug has less side
effects than horse blood, but don’t know yet how well
it works on AA. Some friends who have been through
similar health problems have recommended I keep all my
options open, so I think I’ll wait to see if I qualify
before starting the horse blood treatment.
The most challenging thing for me so far has been
keeping myself from moving fast enough to keep up with
my mind, and instead feeling how slow my body needs to
move and slowing my mind down to adjust to it. I go
back and forth between periods of acting like a
teenager (sleep in, read, surf the internet, watch TV,
bug my little brother and sisters), working on some
project (like writing or trying to start up a public
intellectual lecture series at a coffeeshop my friend
owns), and dabbling in some alternative ways to boost
my health (I’ve started some Yoga/Tai’chi/meditation
classes, been getting Energy healing treatments to get
my Chi moving through some blockages, been seeing a
naturopath who does some really nice Cranial-Sacral
work on me, and trying out different kinds of
meditation and prayer on my own). In all I feel
really lucky to have this chance to spend my time
indulging in all kinds of different things I’ve always
wanted to explore, but never had the time for before.
I do get down sometimes, mostly when I have to get
transfusions (and they said disco was dead). The
transfusions seem to remind me that I’m sick and I
resent not being able to handle this thing within my
own power. Usually I can’t sleep the night before I
have to go see a doctor. But other than that I’ve
been taking a lot of heat for being too cheery or
good-mooded about this whole thing. While I admit
it’s a problem, I’ve discovered some paradoxes built
into the need to be “a fighter” in order to kick this
disease, and at the same time having been such a
fighter my whole life that I suspect that pushing
myself too hard may have been what made me sick. To
date, the best advice has come from my newly acquired
Chinese healer who reminds me to “smile first, make
happy thought later.”
I think that covers many bases. At least enough for a
first date. I want to thank every one of you who has
even thought of me in this time; some have visited,
others have called or sent encouraging notes, and
still others have said they avoided calling so as to
not bother me. But an email or call is always
welcome, and a darn good way to keep in touch, don’t
you think?
I can’t say enough about the support of my family,
especially my mother who is continuously willing to
drop everything, skip work, and add more to her
already busy life to attend to my every need. She
ventured into Harlem to live with me for a month back
when we were figuring out what was going on, and is
still serving me breakfast in bed now that I’m back in
Seattle.
I have had the opportunity to do some significant
dwelling so far, and every once in a while I come up
with something pretty good, things I think other
people might realize too if they had time to lie
around all day and do nothing. I might share these
fruits of my inactivity down the road, but in the
meantime I’ll let you know how things are going as
they develop. If you want to call or write, the
number is 425 644 4044 and the address is 2415 176th
CT NE, Redmond WA 98052. Thanks, and take care of
yourselves.
Love,
Andy
Ps here are some links to websites if you want to
learn more:
http://www.aplastic.org/
www.aamds.org
http://medic.med.uth.tmc.edu/edprog/00000146.htm
http://www.med.jhu.edu/cancerctr/hematol/aa.htm
http://www.mayoclinic.com/invoke.cfm?id=DS00322
http://www.nlm.nih.gov/medlineplus/ency/article/000529.htm#causesAndRisk
http://www.emedicine.com/med/topic162.htm
http://rarediseases.about.com/cs/aplasticanemia/
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