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.

good day and good news, my cohearts

I had projected that this visit to Dr. Gore might bring good news. and it turned out as good as I anticipated, maybe a little better.

to start with, she's great. in the running for my favorite doc yet. present, personable, knowledgeable, hopeful...and a Sondheim fan.

the drug in the the study is indeed Nutlin-3, the one I read such great things about online, and the study is being conducted in conjunction with M.D. Anderson in Houston, Harvard medical center, Sloan-Kettering in New York, START in San Antonio. she teleconferences weekly with them, and I get the sense that she's on top of whatever research is going on out there.

yes, it's an oral chemo. drugs to counter the side effects are not necessary - no decadron, and read my lips - no neu lasta.

in the consent form, there are six pages of side effects. they represent everything that anyone in the study has ever reported. I feel realistic about discounting most of them. one man reported prostate trouble...he was 75...we don't think the drug necessarily caused it...

the typical side effects are...surprise...fatigue, nausea, and loss of appetite.

but, she said, she would be very surprised if the new regimen wasn't less difficult than the Yolandis treatments.

such good news.

the study is a phase 1...but at the "tail" of it. that means they have a pretty good idea about the dose, the length of a cycle (a month instead of three weeks), and the side effects. I am very very lucky about that. Dr. Gore says that she has had people on Nutlin-3 for up to two years.

she also used a surprising phrase.

she said, it is exciting to think that we may have our finger on a possible achilles heel for cancer.

this drug is being used in studies on a number of different types of cancers, including leukemia. the p-53 thing seems kind of basic to a lot of different cases.

people who conduct studies should have a hope that their findings could change the world. but I think I'm going to let myself have a little of that hope, too.

I'm going to need to log more hospital time than before.

day 1, they watch me for 8 hours. day 2, a quick visit. day 5, 8 hours again. day 6, a quick visit. (yes, Saturday). then labs on day 15 and 22. that's for the first two cycles. there's a scan every two cycles as well.

a lot of time in Aurora.

back in the 70's, when Aurora Mall was new and Aurora was filling western Kansas with thousands of shiny new condos, the trees had just been planted, and Parker seemed like a whole separate town.

it was fashionable then to pick on Aurora...I remember a humorous song sung at a hoot at the Oxford Hotel, in which the real reason weather moves from west to east here is that, "friends, Aurora sucks!" it was seen as a tangled, soulless non-community, a roach motel that it was easy enough to drive into, but impossible to check out.

in the more enlightened post-millennium, where Aurora Mall has become a graffitti marked ghetto center and traffic makes time stand still, the Aurora of the seventies has become sorely missed.

I promise I'll drop a trail of bread crumbs on my way in, so I can find my way back out at the end of the day. they certainly have a nice distant view of the mountains, though...

my intuition was right about the study, too, in that there is no shortage of slots. whereas the study originally included many types of cancer, now it has redefined its focus as only sarcoma patients.

amazing.

so in all 5 study centers...24 patients. two currently in Denver.

yeah, they have room.

Dr. Gore said, you're sick of hearing this by now, but what you have is very very rare.

in any field of my life, I've never seen the view from the top of the bell curve. I've always been your Standard Deviant, in the far out 1% of the tail.

so I won the lottery you never want to win...but I also won big time, being someplace that has a connection to the forefront of sarcoma research.

so that hurdle is crossed.

the second...the needle biopsy...Dr. Gore, best as I recollect, described it as finding out if I have the right kind of p53 or not. different from Dr. Elias' description, about whether the cancer has mutated already or not.

so, not sure of the nature of the test. but I'm sure I was told there's a 50/50 chance of being a candidate for the study, based on the biopsy results.

now, this is the sheerest projection.

but... read what is said about p-53...

If a person inherits only one functional copy of the p53 gene from their parents, they are predisposed to cancer and usually develop several independent tumors in a variety of tissues in early adulthood. This condition is rare, and is known as Li-Fraumeni syndrome. However, mutations in p53 are found in most tumor types, and so contribute to the complex network of molecular events leading to tumor formation.

my dad had a lump in his neck that I remember he had an operation for. not so many years later, he died of what they called lung cancer.

if I had to put smart money down right now on whether this ultra-rare cancer I have was genetically linked to my father possibly having the exact same cancer...I'd make the bet.

and the possibility that it's linked to inheriting only one functional copy of p-53, and that not only would I qualify for the study but maybe get striking benefit from exactly this therapy?

I'd be a real Nutlin case not to think it might look just that way.

biopsy results take ten days to come back. so, darn it, I don't get to experience any side effects for maybe another two weeks. guess I'll just have to keep getting stronger.

I know. if I could start tomorrow, I would. my shoulder is starting to hurt from the tumor. my guitar playing sucks...fortunately, it's really hard to say if it is worse than it ever was. I am aware that, if I start feeling effects from the cancer, it will make the days when only the cure affected me seem like the good old days.

which they were, and are. good, good days.

I'm a little too important for my taste this past week. guiding Elena's project in for a landing, doing the Lost Alamos concert tonight, getting more involved in the UnAssisted Living project, Modniks coming back on line, ReJuveniles playing again on May 21st...and the usual assortment of other projects, gigs, and rehearsals...there have been actual phone calls I've needed to take. too important for my taste.

but May.

the month of permission. May I? You May.

the month of possibility. I May yet kick this thing.

Cinco de Mayo. (literally, I'll take five with mayo, please)

this month, even before I see any docs, I'm enrolled in the Mayo clinic. the renewing powers of spring.

Promise of Spring...that's the title of Elena's CD, over a decade and a half in coming out. and the chorus says,

times are uncertain/ who knows what tomorrow may bring?/ but the muddy earth promises Spring.

"Colonel Mc Croskey, this is Ted Striker. Mayday! Mayday!"

"Mayday? What the heck is that?"

"Mayday? Why, it's the Russian New Year! We can have a parade and decorate a big pole..."

it's April 30th...not time to say mayday yet. the business of my life for the next two weeks will not be the business of preserving life, but instead the business of living.

good news

a little entry for a little good news

on Monday Laurie, Dr. Elias' nurse, said that the doctor on the new study would get back to me in a couple of days

today, Friday, I decided to give Laurie a call. left a message.

Laurie called back in a few hours. but by then I had heard back from Dr. Gore's office, and had an appointment for 11am Thursday the 28th.

I am thinking that they wouldn't have make make an appointment to tell me, sorry, there's no room in the study.

so I'm going to pretend I'm past one hurdle.

I'll hear all about the second one, the needle biopsy, at the appointment, I'm guessing.

Dr. Nemechek had called a week or so ago, and I poked my head into his office right after. I wrote a long email to Jane, the very caring front desk woman at his office; the next day, Andy called again and I was able to speak with him.

he said they did needle biopsies all the time, that they can be useful...this is the guy who said, hearing about my biopsy at our first meeting, "you don't poke it with a needle!!!" but he tends to make blanket statements and later blanket retractions...

if the drug they're talking about is Nutrin-3...and Dr. Nemechek said it is...there's some amazing stuff about it online. in lab tests it's been 93% effective.

Dr. Nemechek also said, a good resource for finding cancer studies is the NIH-NCI site, which lists all federally funded cancer studies. (not those sponsored by drug companies)

I think the more we know, the more we know.

and finally to the important stuff...gee I sure hope some folks come out to the Lost Alamos show the evening of April 30th at the Harmony common house in Golden. Brian and Vicki are wonderful, talented, crazy people, and no one works harder than they do on their performances. you get some sense of it on our YouTube videos, but last show we needed 14 instruments to get through it. we're hard on instruments. no, not like Pete Townsend, but the results are smashing...

more later

plan E

the new plan of attack.

the first word out of Dr. Elias' mouth today after he saw Friday's scan was, "unfortunately..."

the growth of the tumor on my shoulder had seemed to unsettle him three weeks ago.

today, he said that some of the tumors in my lungs looked similar to the last scan, even the same, but some were growing.

the results were not good enough for him, and he recommended choosing another course of action.

there is a doctor at UCH, he said, who is conducting a phase 1 study of an inhibitor inhibitor.

he got a big kick out of that.

p53, says wikipedia, is a tumor suppressor protein that is called the "master watchman" for its role in preventing mutations.

it is inhibited by mdm2...and maybe you can learn more about that from wikipedia. I couldn't make head nor tails of it...

the new drug inhibits mdm2.

Andy Nemechek seemed almost a little contemptuous of Yondelis, the drug I was on in the first study...said it was traditional chemotherapy, as it had been practiced since the forties.

when I asked Dr. Klancar about Andy's statement, she said he was less impressed because it wasn't a "glamorous biological agent".

I don't know one of those from Maxwell Smart, but it sure sounded alluring.

the new drug in the study, which I have yet to find the name of, seems like a glamorous biological agent.

and I...yes, I...am making some assumptions.

firstly, that it's not infusion like the last two but probably an oral pill, like the serofanib I was close to going on.

second, that there is some chance that using it does not involve either decadron, the steroid I've had since november, or neulasta/ neupogen, the neutrophil stimulant containing e coli.

wouldn't it be nice if that were the case?

now, there are two barriers to beginning the treatment on the new drug:

1. it's a phase 1 study.

• Phase I trials: These first studies in people evaluate how a new drug should be given (by mouth, injected into the blood, or injected into the muscle), how often, and what dose is safe. A phase I trial usually enrolls only a small number of patients, sometimes as few as a dozen.
  
  
• Phase II trials: A phase II trial continues to test the safety of the drug, and begins to evaluate how well the new drug works. Phase II studies usually focus on a particular type of cancer.
  
  
• Phase III trials: These studies test a new drug, a new combination of drugs, or a new surgical procedure in comparison to the current standard. A participant will usually be assigned to the standard group or the new group at random (called randomization). Phase III trials often enroll large numbers of people and may be conducted at many doctors' offices, clinics, and cancer centers nationwide.

so there aren't many slots, and there may not be any. Dr. Elias said that the study was at the end of phase 1, moving into phase 2...it would be nice if they had pretty good ideas of the effective dose, timing, etc.

I'll hear from them in a couple of days, with more info on the availability of openings. and I know Dr. Elias will pull all he can for me.

2. a biopsy needs to be done on a tumor. if the tumor has already mutated, said the doc, the drug will be useless.

fortunately, a needle biopsy will suffice, going into the lungs not necessary as there's a barely subcutaneous tumor on my shoulder. you never know just how you're going to get lucky...

so...the new drug...perhaps more of a gamble, but perhaps for more of the marbles. Doc E says the study has already had good results on sarcoma, my rare variety of cancer, and that 50% of the patients? students? participants? poor wretches? had responded to the drug, with stabilization or.......he trailed off.

so possibly better outcome on the output end and less damage on the input end.

lot of guesses. I don't know.

one thing I do know: the study requires you "washout" any other drugs for four weeks. it's been three since my last chemo.

so I will have no Yondelis side effects this week.

forgive me for rejoicing.

I have been making men and women cry all day telling them this turn of events. it was a good six weeks indeed, while we all felt the present drug was shrinking the tumors.

but I...the guy with the down weeks from Yondelis side effects and the tumor on my shoulder that both Elias today and Nemechek weeks ago said any surgery upon which would wreck my shoulder...I am thinking this new gamble may be for more of the marbles, on both ends.

maybe maybe maybe.

so I am holding my tears a bit longer.

the last six weeks, I have been focusing on my life rather than life, on living rather than staying alive. thinking about longer time frames, and feeling my way of life more like I used to. more, what will I do to get through the summer, less what if this is my last summer?

today, the appreciation of the day seems full of the possible limitation to the number of days.

but the trick I seem to need to learn, more and more, is to prepare for all of the best and all of the worst life has to offer all at once.

quite some trick.

tantamount to playing a Beatles song, with John and George gone...a Who song...seeing The Dead without Garcia, Pigpen, Brent Mydland, Keith Godchaux, or Vince Welnick...wholly leaving out mention of the Allman Brothers, Lynyrd Skynyrd, the Rolling Stones...

I play those songs all the time, smiling.

the songs are not gone.

art is not the only way we are not gone when we go.

we will always, always, always have been here.

and as another famous Doc, Brown, says over and over to Marty McFly, don't do anything, don't talk to anyone, don't look at anything! everything we do in this time changes the future forever, in ways we have no way of predicting.

surgery, radiation, adriamycin, yondelis,

now plan E will change the future.

p.s. I second Woody Allen, who says, "I don't wish to achieve immortality through my art. I wish to achieve immortality through not dying."