harder days

like so many headscratching things on this big blue spinning marble, these days for me are like Diddy Wah Diddy.

the erudite reader will not need me to recount the importance in my upbringing/downfall/ shattering of all social guidelines that Zap comix and R. Crumb had. they were like the early maps of the new world, showing that land existed far from where I was living, and that different people with different thoughts and speech lived there, people who somehow, miraculously, were not stuck down for the compulsive attraction they had to heresy and a very rich, full style of existentialism.

they made both look like fun, and a million laughs.

no, I won't list my Zap comix memories...forty years later, they would still scorch the pixels of my computer screen.

except I will talk about Mr. Natural.

he was about four foot high, with a three and a half foot beard, and was able to disabuse everyone of their spiritual illusions without really having any insights of value to substitute in their place. he had an answer for every deep question...that left the questioner more lost than ever. he was a curmudgeon, moody, sarcastic, demanding, impatient.

his own pursuits had about the level of spiritual enlightenment of Chico Marx.

Flakey Foont was his natural prey.

Flakey knew enough to seek understanding, but without a clue what it would look like. Mr. Natural could strip his illusions all day, point out his shortcomings and foibles, and Foont never came to realize that his quest for spirituality, unenlightened as it was, was light itself compared to Mr. Natural's cynicism.

perhaps R. Crumb was making a point about a holy man whose gospel is that nothing is holy, that that's the best one can expect. it's great having a partial map of that world...liberating...but I didn't move there.

Flakey Foont asks Mr. Natural, so, after all, what does Diddy Wah Diddy mean?

Mr. Natural says, if you don't know by now, buddy, don't mess with it.

when I move, I cough. when I cough, I get dizzy.

the shoulder tumor had taught me not to stand, not to lift. it still seems to be getting less painful, though I am doing mostly what it wants.

but this new thing is enforcing a quite unwanted sedentaryness.

but it means that most of my day is spent in something not too far from comfort.

except, perhaps, for dose days, like last thursday through monday.

those days, I need to be horizontal, I can't eat, and I feel like David Bowie in The Man Who Fell to Earth...the possessor of some unknown extraterrestrial weakness and nausea.

like Diddy Wah Diddy, I don't know what it means.

no one else does, either.

it could be The War Effort.

it could be the drugs seizing 80% of my energy budget for the War On Tumors. it could be that once life-compulsive tumor cells are being sloughed off, liquefied into my lungs like consumption, irritating everyone.

the bump on my shoulder...often called, in an attempt to allay the sense of its strangeness, my "booboo" or "bobo"...isn't twice its former size. it isn't half its former size. there are new, squishy, impeding areas of it. but...is it just new tumor, or old giving up the ghost?

yes, yes, Scott, you are tired, you are nauseous, you cough. take some tessalon perles...but watch, they may make you dizzy. drink more water. your labs look perfect, ekg perfect, you are tolerating the drug amazingly well. let's all hope this is all Nutlin-3 going to cancer cancelling town.

tolerance. tolerating. tolerable. toleration, Mammy Yokum! intolerant. doin' tol'able.

let's not wonder if it is instead the beginning of the end.

the needle biopsy has been circulating nationwide for weeks...someday we will know the results. the C-T scan will happen on the 14th of July, and soon after we will know if we stay the course or try one of what Dr. Gore says are 900 cancer drugs currently in study.

until then, Flakey...don't mess with it.

if the indications are good to miraculous, I won't quibble about wanting to get better in a way that makes me actually feel better. curing, instead of matching, toxicity.

and this is day 7 in the cycle...no more dose for three more weeks...of which each day is supposed to get better and better.

oh, yeah, the blessings column:

my miracle drug is not something I have to live in Bangla Desh to be in a study for.

whatever is being taken away from me...my voice is better than it was last summer. if I sit down for gigs, I can sing a long time and hardly cough at all.

with a boulder on my shoulder, feeling kind of older (Springsteen), I still don't think I suck playing guitar much worse than ever.

and I still get to do sessions at the house...doesn't seem like I'm out of contact with whatever sense of music I've always had. still have easy access to all my ideas, preferences, prejudices.

it's, like, huge.

this was my worst week, and I didn't know what I would be able to do. but I did three gigs and a couple of sessions. and I could be wrong, but I don't think I'm a liability yet.

so often in the last year and a half, I've waited for word. I'm pretty good at it. so often in that time, the second I got word, I longed for the days before I'd had it.

so it's ok that I'm not to mess with it right now. the present scrolls by, and is doable.

we want comfortable, but we'll take doable.

One Last Kiss

the original production of Follies, Stephen Sondheim’s 1971 musical, was opulent and ambitious, and unlike anything that had been seen previous. common to all theatrical works, it is also just as gone forever as the styles of musical it pastiches, whose heyday was the era between the Great Wars.

when the time machine is invented, as full as the Ed Sullivan theatre will be on February 9, 1964, the 1971 shows of Follies could well be just as full. until then, going back will be just as achingly impossible.

the musical takes place in 1971, as well. the theatre where a Ziegfield-like impressario produced lavish musicals for a decade and a half, four decades ago, is being torn down to make room for a parking lot - in New York, a much surer investment. all of the Weissman girls and guys have been invited to a first and last reunion to commemorate and try to let go of a bygone era.

Weissman says, I always know when something’s over.

brave words. tough talk.

but Sondheim does not know when something’s over. he, I will guess, enjoys the musical styles of the Twenties and Thirties more today, if anything, than he did in 1971. and though the theme of Follies is the folly of trying to hold onto beautiful romantic visions whose times have passed - bygone eras of music, lost days of youth, imaginings of love and unexperienced unions - the actual agenda of the play is to present those very styles of music, with Sondheim’s genius-fueled engine under the hood, and see if he can turn back the clock and make jaded modern folk understand the guilty pleasure those songs and performers fill him with.

yes, yes, you hear him apologize. the themes are surfacey and dated. the musical devices have become cliches. the patter lyrics are hardly cutting edge wordplay anymore.

but...with a grand backdrop...with resonances to characters we are made to care about...shining performances, better wordplay, cooler orchestration...can't I show you what it is I love about old school theater, can't I make it do to you what it does to me?

madness. folly. it's over, Steve.

but like I say in The ReJuveniles, a 60's cover band, the 60's aren't over 'til we say they're over.

think of A Mighty Wind. The Folksmen in their striped shirts, desperately clinging to whatever place they may have in PBS reunions, still foolishly believing in their bygone style of music. aren't they saps? these songs are parodies, aren't they? doesn't it all seem stupid forty years later? didn't we love it? wasn't it fun? doesn't a part of us still believe? Mitch and Mickey could be, instead of archetypal folk lovers in a Grecian urn of song, clueless and kind of irritating cloud jockeys...

but don't we ache for them to have One Last Kiss?

I do. I'm a fool. it is my sort that Follies is meant for. just like a hard hitting documentary on prostitution that spends every minute distancing the filmmaker and the audience from its interviewees, yet owes its reason for being to the salacious interest we have in the women,

so we are promised in Follies a modern, hard hitting story about the foolishness of romantic illusion...but it is the romance itself that draws Sondheim, the hundred collaborators in a major stage production, and the audience into the proceedings.

they said it about football, but I say it often about music. you have to be smart enough to do it well, and dumb enough to think it matters.

or a big enough fool.

Sondheim is that Pulitzer prize winning fool.

One Last Kiss, sing the operatically voiced Nelson Eddy and Jeannette McDonald types in some versions of Follies. (here sung by a Present character and her Young self in duet.) our affair is over, and it's bittersweet, so let's have One Last Kiss before we forever part.

Steve wants us to think that Follies is One Last Kiss from an affair that he knows damn well is over, his love affair with a musical style never to be popular again.

the door to the theater that is closed by the Ghost of bygone beauty at the end of the show...that door is closed every night, in every production. it says the end. but it will go on and on.

what made the Kennedy Center production of Follies a lifetime must-see for me was the spectre of bygone beauty that the original production of Follies had become in theater lore.

my first Follies was put on in a small theater in LA, by a pan-asian drama company. now, you might think that it would be hard to see past that aspect (accent? slant?) of the production, but in reality the characters in Follies are so steeped in denial and maintaining appearances that it actually all worked out rather well. "Ben Stone" is not an un-asian character, or character name.

I saw the 2001 revival on Broadway, where instead of taking an empty theater and elaborately dressing it up to resemble an empty theater, you were shown as you sat down the untreated back wall of that very theater.

it sure emphasized the story.

but I left feeling kind of a little gypped, or hoodwinked.

but, here, this year, the Kennedy Center which had presented six Sondheim musicals for his 70th birthday (I saw Merrily We Roll Along), announces a 28 piece orchestra Bernadette Peters- starring new production of Follies. big budget. big deal.

as close to a time machine as I imagine I will ever see, despite the best efforts of Apple and Antares.

start saving now. I have to be there. maybe...maybe...maybe...

maybe I'll get to see what Steve really had had in mind, what veteran theatregoers throughout the blogosphere often refer to as the best theater experience of their lives.

Follies plays out to the beholder on three visual levels.

one level is the well lit, Present 1971 characters...the main four are the two couples Ben and Phyllis, Buddy and Sally.

the second is the pallid appearances of the Young versions of each of the characters, from when the shows were being put on. a great deal of the fun comes from seeing the Present couples interact while their Young versions show the flashback of what is being referred to.

sometimes the interactions are identical; sometimes the Young couples put the lie to what the Present ones are saying.

the third level is that of the silent, posing, Erte-like showgirl-costume clad Ghosts of bygone beauty, the very illusion itself it would be "Folly" to pursue or cling to. always dimly lit, out of reach, tantalizing but just a mute greek chorus, reinforcing the unapproachable.

I go into this in detail because, ironically, the beautiful shining unapproachable Ghost that mutely distances this production of Follies from its potential does not come from 1928 but 1971.

I think the director of this show was seeking to build a time machine, to be in the theatre for Follies-Done-Right, The Way It Was.

not that he reproduced all of the choreography, imitated the sets, stuck to the original book (which has been changed many times).

he didn't.

but I felt that again and again, his choices reflected The Play...the 1971 Icon...and not the play...the story between the characters, the present, living, soon to be just as gone forever experience of this cast, these people, this place, this time.

Regine, an 80 year old French cabaret chanteuse, played Solange, the thickly accented elderly cabaret chanteuse in the play. yes...she actually is that person, I'm sure of it. did it make her performance great?

non.

her solo number, an amazingly witty, fast paced Sondheim travelogue, was unintelligibly garbled. not fatal, but far from bringing the noise.

Linda Lavin's "Broadway Baby"...lisa loved it, and it's constructed to be an unavoidable show stopper. I felt like the Icon was served...if this person does this number, won't that be great?

but again and again throughout the evening, I felt that emotionality and continuity...presentness... was lost to homage. that knowing the reason for the casting took precedence over how well the actor cast would perform his or her part.

I thought Phyllis, for a woman referred to as icy and jaded a dozen times in the script, was screechy and rushed. I thought Ben's number where he breaks down trying to deliver a jaunty tribute to himself was emotionally way mishandled...I kept seeing the point in Episode III where Anakin becomes Darth Vader, arguably the nexus of all six Star Wars movies, which largely due to the acting came across to me like, "yeah. ok. whatever."

I though Ben's physical appearance was uncannily like the Ben in the few snippets of the '71 production that exist on YouTube...showing more of a "big fat phony" than the steel and stone, say, Tom Wopat showed in the 2001 Broadway version.

maybe it's those asians, but that's more where the interest is for me...when stone starts to crack.

Buddy was everything you could want Buddy to be. you read about Ben in the magazines...you meet Buddy in the bar. the common man's strengths, and his weaknesses as well. I though the portrayal was spot on.

I never liked Bernadette Peters. til I saw her in Into The Woods, the Sondheim musical about fairy tales, as the Witch.

she was not the Mel Brooks movie vamp for 95% of the first act...agreeing to the ugly witch costume was only part of that decision...but I had to admit, even her BP moments throughout the play were effective and essential; in the end, cool.

she is not a typecast Sally. Sally has let herself go some...Bernadette, I hypothesize, hugs herself constantly and never lets herself go.

she had moments in Follies that nailed me to the wall. twice she hit the gentlest note in the most powerful way, and held it dangerously, unerringly, until she had won the war and could do anything she wanted with her spoils, the audience. high kilowatt star power.

another untouted moment that put me right back in the story was when she was listening to Ben sing his song "The Road Not Taken", in which he unconvincingly makes his case that the choices he did not make throughout his life (including choosing Sally) really had little importance and wouldn't have changed him much.

Sally just listens. but the way Bernadette Peters listened showed the whole point of the song, louder than Ben's singing.

that felt like a Present moment to me.

I don't think the play of Follies wants a star as Sally. I think the Icon "Follies" demands it.

the smartest thing Bernadette Peters could have done was to not overact or overplay at any point. and she did that. in fact, I've never seen a less signature performance from her...it's as if she realized that the role is not so much a Star turn, though there is real drama there to be conveyed.

"Losing My Mind" is Sally's big second act number...whoever I've seen sing it, I've seen the devil sit on her one shoulder, saying, sell it, baby! the second you sell it, though, you come off like Napoleon the XVI singing, "They're Coming To Take Me Away, Ha Haaa!"

I didn't even see the devil on Bernadette's shoulder. she just sang it. her voice sounded a little rough for the only time in the show...an affect? at the end she took a precipitous octave plunge which I thought was pure Icon...but it was followed by one of those light pure notes that blew me back like a Maxell hi-fi ad. guess there's no argument here...

there was pretty much one set change in the night. and it was a stunner.

after an hour and a half of looking at (thoughtfully constructed) black theatre walls, a curtain covered the proscenium arch. the four principals are arguing full steam. after I'll guess no more than 25 seconds, the curtain drops to the stage and all you can see is concentric half circles of large pink flowers, filling every inch of space.

wow.

it is, of course, the beginning of the Loveland sequence, which starts with an impossibly cliched 20's style song about love and lovers and Loveland...and during which sequence each of the characters in solo numbers breaks down and has to relinquish their illusions for the necessity of their real lives.

it turns out the pink of the flowers was due to stage lighting, which changes again and again impressively redecorating the set.

the audience applauded thunderously.

but the audience seemed a little like a Spamalot audience to me.

Spamalot was the bringing of Monty Python and the Holy Grail to the Broadway stage. and why not, say I.

but it makes for a Rocky Horror midnight show kind of affair, where the audience knows what's about to happen throughout, and laughs before the joke.

still good fun.

it didn't happen in 1971, though. no Follies audience then had any idea what to expect.

this time, it felt like...

ok...here's Sally's big number. can she pull it off? will Carlotta top Polly Bergen in the 2001 version? here's Linda Lavin...

I felt like we got disconnected star moments, in full glory, while the emotional material (which I find devastating) was truncated and/ or mishandled.

if the audience thunderously applauds a set change...are we really putting enough focus on the material?

yeah, it's hard when every great Broadway singer...and every lesser...has offered their versions of the show's songs. where do you go? what do you do?

what you don't do, though, is fill out a form. even in Follies, which will always have a certain amount of "Revolver" to it...pull the trigger, and here's another song more related to the genre than to the plot...especially in Follies, when it's time for the soap opera, it's time.

and it's a good one. and I missed it, staring into the dazzle of the Ghost of bygone beauty, the director's muse to which he was true, the creation of the Big "Follies".

at the end of Follies, the four principals, each having considered taking the road not taken, through a night of revelations of infidelity and resulting recriminations, leave the theater as they came in, the two couples intact, to resume their lives, sadder, arguably wiser, but definitely more resigned and more disillusioned, stripped of their follies.

I felt a little like that when I left at the end of the night. back to waiting for the time machine. 1971 more unattainable than ever.

but...Follies at the Kennedy Center...wasn't that the room to be in at the time? didn't I just have to be there? the flawless orchestra, those two or three notes, Sondheim's words and music, the set change, the spark in the dark...it wasn't 1971, but this time, this time I was there, and I imagine somewhere in the future I will encounter the Ghost of bygone beauty of this play staring at me from the internet, from another Follies production.

only this time I will have seen her fully lit, beauty marks, warts, and all.

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.