it's being a Hard Day's Night...

and it's only fair/ ironic that you, the longsuffering Reader, get the ? benefit ? of it all...

there is the effect on me of the cancer, and the effect on me of the cure. perspective dictates that both yesterday being minimal should be cause for widespread e-joicing. (noun, gerund: a joyous response to good news in a blog; also see e-lation)

now there is the effect of the study, and the means of realizing the study. yesterday, those were a bitch.

got home from the gig Thursday eve/ Friday at 12:30...went to bed not long after.

could not sleep.

sleep has been trouble for awhile. I'll sleep for like four hours; then my old school body needs another position, and my new shoulder hurts in any other. negotiations can lead to a rosary of sleep beads, sometimes even approaching adequate.

Thursday after the gig I never went down.

it's as if my body has a new odd natural response...ok, you may not treat today that different from any other day, but I'm worried sick about it, and you're not sleeping tonight.

got up at 5:45; to hospital at 7am Friday for a day predicted to last til 10pm.

the port was not yielding blood right away. rituals were exercised; I sang Mickey's "Sure-Flow Cath " song from A Mighty Wind to myself silently. they got the labs done.

I knew my vanity concerning chest hair had to be sacrificed, now, as EKG's were needed every two hours. I asked Nicole, the pretty darned great nurse seeing me through the day, to shave the part of my chest whee the stickers would go before they were applied. it threw her a bit, but she found a razor.

in retrospect, it was too little, too late.

the Nutlin-3 was sent by the hospital pharmacy by 9...it was predicted to take as long as til 10am. for 12 hours after dosing, they wanted my reactions monitored.

2500 grams...five 500 gram pills. not quite as big as my daily vitamins...but not some blue screen blue speck either.

and two "premeds", which I somehow hadn't expected. a quick IV dose of something I tried really hard to remember, that sounded like it started with "cait...", and ativan.

ativan I had had a prescription for since the first chemotherapy, and never taken a pill. it was described as a more powerful anti-psychotic than compazine, and an anti-emetic to be taken when compazine wasn't doing the job.

it supposedly made one "mellow".

I wanted no part of any of it. I went into a dance at the mention of atavan yesterday.

I mean, like Mc Fly says in Back to the Future, you're the Doc, Doc. here was a bona fide experimental drug I was taking for the first time. and a team of women watching me like nuns with OCD, sensitive to anything I could need or any trouble I could have. (oddly echoing some of my favorite erotic literature)

life, cancer, Nutlin-3, and these nurses were not things I should be fucking around with.

but I negotiated starting with half an ativan.

what it did may have looked like mellow from the outside, but felt like listening to "The Wall" in its entirety. thick. heavy. leaden. I'm still not sure whether it saves one from nausea, or talks one out of complaining about nausea. like I had retained my musculature, but the rest of my body had become The Hulk, and I wasn't up to the task of moving an arm or leg of the big guy.

not a trace, however, of anything even my chemo savvy body would identify as nausea.

and compared to the anti-emetics of months past...short, small, and quickly past.

I slept some in the two hour periods between exams. been a little weak, wobbly. I don't believe any more anti nausea stuff is scheduled...they were satisfied I had some Zofran at home. next day 1, I'm going to ask if any substitute for the ativan will do in any way...I was not what anyone would call Comfortably Numb.

so 5pm, last labs in the infusion center...7pm labs were to come from the after hours folks aways away. I guess the study has some wording like "10 to 12 hours" as the observation time...they just assumed I'd go for the 10.

but...no blood from the port.

Nicole felt the needle was clogged up from the day's use. she determined to restick me. not exactly a reward for good behavior, but no dealbreaker.

but she set about removing the sticky saran wrap that had protected the needle in the port.

I have not suffered. I have complained. but I have not suffered. it is fully possible I have not suffered in my lifetime. I've made all of the faces on the pain chart from time to time...sometimes while attempting "Crossroads" by Eric Clapton and Cream.

it's tempting to think one has suffered, one is suffering. I know better.

gee, said Nicole, this new protector stuff sure is sticky!

lisa said there was half inch long chest hairs all along its form when it was off. no one was merciless.

but that was the worst experience of my treatment so far. I (who have no real scale to judge) would call it a 4 to 5. legs in the air, pain sounds. and it was harder for lisa to watch it than me to go through it.

I can hear the masses of the world's women hissing at me, see?

lisa said, at least when you're waxed, the hairs are snipped as short as can be.

fashion mavens of the world...don't do it for my sake. I mean, I grew up in the 60's, if that isn't an oxymoron, and I have good associations with a certain amount of naturalness. and a certain amount of distaste for lightning bolt topiary and the like.

but...no difference it could ever make to any man anywhere in the world would lead me to prescribe enduring anything like I did yesterday. I had surrendered about preserving my chest hair. now I ultra double super surrender. take my legs, too, if it will help.

those selfless nurses, without curses, stayed til 7pm. when the new needle didn't work either, they injected some "cath flow" much as Lorie at Dr. Elias' office had done. when that was unimpressive, after half an hour, a night duty nurse suggested just running a bag of saline through it (into me)...fluids were going in, but nothing coming out.

I was skeptical. but they got their 7pm labs, staying probably 90 minutes late.

going in this morning at 10 for one short round of labs. hmm.

all thankfully, wonderfully, predictibly, redundantly normal.

I don't have iron poor blood. I have blood poor blood. this is worse than an IRS audit.

no one knew if Nutlin-3 is using the Gleevec model or not. I have another long day tuesday, and will see Dr. Gore then...she'll know.

I did find out that, contrary to what I thought, the finding of the needle biopsy that I had the P-53 "wild" gene meant that I had the version of the gene found in the wild; the common, non-mutated one.

I may suspend my trying to weave together theories about my treatment, and consider learning about it instead.

but...let the imagining begin.

am I more pain free today? does the tumor look less angry? is it working in minutes?

the article in the last blog entry said that 31 out of 31 people in the first Gleevec trial improved.

now that is a good day at Baskin- Robbins, however you scoop it.

(did you notice the "31" contained in the letters "BR"? someone there did, and it sure took me awhile...)

did you ever read Kurt Vonnegut? I did, long after I had given up reading for music. cynical. pessimistic, but outside of the box. chewy, crunchy, tasty ideas.

I remember it was in the preface to Welcome to the Monkey House that he stated the two predominant themes in his work.

I did actually try to google the preface...I often like to give the Discerning Reader a quote instead of a paraphrase. it didn't yield in the time I budgeted for it. sorry.

one theme was something he felt after the birth of his first child...

"here I am, cleaning shit off of practically everything"

( I would add, "but I'm not bitter...")

the second was taken from the last words of his dying sister : "No pain."

I'll sign my name to that petition.

needle biopsy the 8th, to look for cellular change. (hope they have Verizon...)

C-T scan July 14th, to look for tumor change. Kathy said, Bastille Day!

it was, oddly enough, the first thing I thought of too. a fine day for a revolution in cancer treatment. I somehow associated it with Brian's song, "(Bas)Steel on Stone", which he will sing in a cheesy French accent with no provocation, and despite all objection.

let the imagining begin. Nutlin-3 "works in minutes". does my shoulder hurt a little less today than it has been hurting?

end times

we don't always know when the parentheses are, that group a time in our lives and define the beginning of the next phase.

today, I do. these days are about to end, with the study beginning tomorrow.

Stewart Greisman (yes, again, get used to it) printed a copy of this article for me a bit ago:

http://www.smithsonianmag.com/science-nature/A-Victory-in-the-War-Against-Cancer.html

it's startling, shocking, and way too hopeful. if you have any thirst for optimism about my fate, look it up.

the article revolves around a drug, Glievec/ Gleevec/ Imatinib/ bin - itamI (isn't he dead?) that counters leukemia by inhbiting the action of a mutant gene/ enzyme that inhibits the action of a cancer preventing gene.

no doctor has told me that this is the same approach that Nutlin-3 uses. but it's like, stop me if you've heard this one before.

Gleevec still holds the record as the drug the FDA approved the fastest ever. it was approved in 2001, has saved thousands of lives, and "turned a fatal disease into a manageable condition"; the price of it, naturally, skyrocketed.

the patient who is the primary example in the article had gotten rid of most of her possessions, was in hospice at her home, and on Dilaudid (the last easement) when she took the drug.

three weeks later she was feeling great. three months after that, she lay down next to her grave site and had her picture taken.

that was in 2000. she is still feeling great.

and probably still missing her damn possessions.

even Wikipedia, the ungoverned internet frontier encyclopedia, has no more than a paragraph about Nutlin-3. but the paragraph contains this phrase:

Nutlin-3 has been shown to affect the production of p53 within minutes.

so...wow.

minutes. it's like I'm taking Anacin or something.

they want another needle biopsy right after day 5, the day after I've finished taking the first round.

that's how soon they want to watch for change.

today is not the first day of the rest of my life. tomorrow is. not that you could call it by any means a rest...

beloved prayeramedics and cohearts, in these pixels I have not yanked your chain. there's been only the hope there has been, only the despair appropriate.

but...wow.

the results of the coin toss are in:

I'm in the study.

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.

8 days / a week

that's about how long it's going to take for me to get the results of the needle biopsy I had Thursday.

I have often said in these "pages" that the hardest work anyone has to do sometimes is to find a comfortable position.

that, faithful readers, is my full time occupation now.

and I am achieving some kind of success in my field. yesterday had long stretches that just plain weren't bad. slept great last night.

mornings, before I get up, are near pain free. I allowed myself the thought that maybe I was getting a break, that some miraculous way the pain from the big ol' tumor in my shoulder was lessening.

the minute I sat up and began to type this, my relationship partner let me know it wasn't happy with me.

what? what did I do?

I had a music night last night with lisa, kathy, and debra. played the rosewood Gryphon...the band sounded good. I had decided to take the day off, and had not done much, just to see if that would keep me out of some trouble - it worked. I felt a little ache playing, but all in all it was great.

it's been for awhile that standing, walking, has brought on the trouble. carrying things...trouble. sitting usually takes the pain away pronto.

but typing...sometimes...not easy. editing in pro tools today kind of achy.

twenty minutes on the stationary bike tonight...as opposed to the stationery bike, an origami marvel...was no problem...hurt less than standing up.

today I had a massage...a blessing from lisa...which felt great throughout...took an aleve as part of the furthering of science, did a stint in the hot tub...all of which helped.

but tomorrow, I do not know what will hurt and what will not, what I am going to be able to do and what I won't.

there is no other course than to prepare for both the best and the worst life has to offer. these spring days. the music I am doing. the support I am getting.

and trying to maintain a sense of tumor.

people say, I would take your pain for you if I could.

I promise, my cohearts, the world would be absolutely no better of a place if you did.

and I know, and you should know, in a very real, solid way, you already are.

people say, what can I do?

I know how completely I am being done for, accepted, provided for. and I know that what I am doing makes staying positive and life seeking kind of harder to stick with for everyone I am in relationship with.

I know that my worries, my hurt, the new health concerns, are not enough to make anyone change the way they are living, accept and partner with life in a fuller way, take better care of themself, do their work...that's not how things work, what propagates a change. people have to hit their own wall, and decide that hitting it this time is enough.

but

if I could

what I would reply,

is:

reconsider throwing the miracles you have in your life away because you are so angry about the miracles you didn't get.

there are certain symbols of having a good life that I've never had.

most, I just don't care about ever having. a Pyramid. the palace at Versailles. Olympic ice skating medal. an FBI black listing.

Francis Ford Coppola was once told he had a reputation for being obsessive about all things in his films. he said, no. there are many many things about film making I don't care about at all, and I let them go dreadfully. but the ones that matter to me really matter.

I have always held on to the anger of the outsider. in my family. in grade school and high school.

that show, Branded, that showed Chuck Connors being stripped of the medals on his uniform, standing like a bronze while gaping holes were made over his heart...those holes were my uniform, were my medals.

my family gave me all the experience and indoctrination to insure that I would be a good outsider in school. I felt that my appearance was derisible, though now I'm not sure whether it wasn't just my look instead...that my body was uncoordinated to the point of being a cripple, though from the vantage of today it seems to have enabled me quite well throughout my life.

I am fond of saying I never succumbed to peer pressure about drugs or alcohol because I was never able to find a peer. but there weren't many traditional rites of passage for a person or a male in the culture of growing up that I went through.

I hated, and envied bitterly, the same people in the same breaths. I cursed life for the miracles others had that I would never have.

part of me isn't done.

but these days, I feel like I have been riding around in a Mercedes all my life, enraged because someone had ripped the peace sign hood ornament off my car.

whatever symbols I have or have not had...I have had an enfranchised life. I have always been one of "the people". I know it now.

still mad.

but, sometimes, I don't let it convince me to throw away the miracles I have had all my life in protest.

what you can do for me is see if you will make the same choice sometime.

writing this, now, I am not hurting.