this morning I tried every appropriate number I had for UCH. it's been eleven days since I had the needle biopsy, whose results were said to take ten days to complete.
I left a message for the study co-ordinator, who returned the call in eight-plus minutes. she said the results took ten business days to get, and that she hoped to know something this week.
lots of people I talk to agree with Tom Petty - The Waiting is the hardest part.
I don't know. I'm a pretty good waiter.
especially when what I'm waiting for is the chance to begin dealing with one form or another of fatigue and nausea inducing toxic cure. especially when their effects would be added to the present negotiations with shoulder pain due to nature's planned muscle set sharing shoulder room with a misshapen softball with a perverted will to grow.
and especially when bad news on this front would have meant the days to come would contain some kind of envy for these days I am living through now.
but we have to consider this Nutlin-3 to be my very best shot, the best possibility we know for arresting, even killing this human created growth that thinks it can kill me and go on without me.
and now we have that shot.
the list of things I love about the last two weeks or so is long, and sweet, and deep.
but I don't envy me those days.
and the next weeks, should I be allowed to undertake what's on my calendar, are going to be pretty darn cool as well.
now, it isn't like I talked to anyone.
Dr. Gore left me a message on the answering machine, saying "I have good news" and suggesting I contact the study co-ordinator. to begin co-ordinating.
I've never been particularly co-ordinated, but now is an excellent time to start, I figure.
and...call me crazy...but I believe her message means I am in the study.
I am lucky.
seemingly an easy statement to challenge.
I've been in a different kind of study for a bit...what brings on the pain? what eases it?
one way of evaluating the track that a person's development is on is whether their world seems to be growing, or shrinking.
mine has been getting way smaller.
standing brings on the pain. sitting, most sitting, immediately relieves it. walking, carrying things, snubs the leash of the invisible pain collar.
I feel best before getting up in the morning. pret' near normal. then when I first get up is often the worst of it for awhile.
sometimes editing, typing, head turning, sets it off even when I'm sitting down. (I'm pain free at the moment as I type)
I sleep for 4-6 hours in the one position of easement...then my body longs to be in another position, while I know full well no other is going to work. conflict ensues.
I have a very angry, very rare form of cancer, at what some might consider an unusually early age.
how then, the devil on my shoulder might say, am I lucky?
in my shrinking world, the most pain free activity in my life still is playing music.
it's beyond my comprehension. I don't know how much longer I can count on such grace. but it is incredibly fortunate.
the worst thing anyone ever said (to my face) was followed directly by one of the very wisest.
Harry Fleishman, who has lived a lifelong campaign to say the very truest thing he knows regardless of its difficulty to hear, said, "I'm glad it's not me."
who in their right mind would ever think or say the opposite...I wish that would happen to me? I don't think anyone can argue with the truth of what he said...only the choice to say it.
debra chided him, as a loyal coheart would do, and he said to her, "You wouldn't want what I have, either."
playing Harry for a second - it's going to be something, sometime. often, a batch of things, over a batch of time.
I'm playing at a benefit this week for a young couple who survived a car crash. and I am here to stand up and shout, that is so not me, and I'm so grateful.
in the sixties, we saw a normal number of people our age fall to disease, accident, natural catastrophe, starvation, and the usual amount (maybe a little higher) of the violence that happens all the time everywhere. above that, we saw thousands of young lives (probably a few older ones too) ended forever by war. and on top of that, a certain number of losses occurred from social forces unique to the times: demonstrations, assassinations, even rock concert security. (the concert tramplings were still years away.)
but then, we saw the leaders of what we took to be a life affirming movement depriving the world of decades of their talent and light through the compulsive desire to squander their gifts and giftedness. I feel it has to be said that the same anger that drives a young man to the top is even more virulent once he is there. inside the talk of love and light and life there was an inner cancer of readiness to let it all go away.
"hope I die before I get old"
no killer of people has ever been as powerful as their own choices; no limiter of life as effective as our own desire to express our pain through limiting our own lives.
now, in our sixties, it seems like we can't swing a caduceus without touching someone facing some debilitating physical problem. it fucking sucks. but I'm not convinced all of it put together is as limiting as the choices people all made every day in every decade preceding.
no. no. I am quite convinced. I wouldn't want what you have, either.
I turn sixty November 5th. I am lucky. I have survived not only natural disaster, everyday violence, war, and many many exposures to rock concert security, but for sixty years I have survived my own choices! and I avoided a lot of very popular choices (through fervent geekdom and arrested adolescence*) that could easily have put me in the penalty box quite often.
the odds are more against my having this type of cancer than those of the Inuit, among whom cancer is virtually unknown.
tally up the ways I didn't get cancer. tally up the other diseases I have never had.
then consider that I had twenty five-ish years of pain free asymptomatic cancer. and the past year of troubles that have not even come close to suffering. and me with no health insurance til the nineties...talk about an angry choice that I don't have to pay for...
and I live in a time where the hope factor changes monthly. and in a state where there are a number of available treatments and studies centering on my precise goddam rare form of cancer. I don't have to sell my music gear to live in Vienna for some cutting edge exploration...Philip Anschutz lived in Denver, and as a result, so will I.
and the coin was flipped...50% chance the biopsy would show me qualified...and I was lucky.
I can't stand without pain. but I can play music. so far. what kind of a break is that, I ask you??
people who can't see under my shirt think I've been working out. look at that mass of muscles under there...
Stewart Greisman - who turned me on to Dr. Elias who turned me on to Dr. Gore but at this point has saved so many lives that he's vaguely annoyed at my putting my gratitude right in his face - quoted Young Frankenstein to me:
you know, I'm a brilliant plastic surgeon, I'm sure I could cure you of that hump.
what hump?
* the more I think about it, my adolescence has been anything but arrested. more like, it has been allowed to roam free for decades, protected by some contrary force of social nature, its adaptive mechanism being the ability to remind others of what their adolescence either was, or could have been.
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