wow

when I started coughing more Tuesday night, after the group vocal session, I was afraid.

everyone who seems way burdened, overshadowed by my health stuff, deeply saddened, I have been telling...look. these are not those days. in these days, I have to surf through the effects of therapy but so far the cancer itself has been pretty much asymptomatic. it would be really, really silly not to let the light of these days in, as a way to prepay for the real hard days that no one knows will come or not.

but Tuesday I was Redd Foxx. this is it, Elizabeth. the big one.

yesterday I kept my daily appointments. but I was as flattened as a cold has ever made me. last night, I sent away my support system...they couldn't do anything for me, I couldn't do anything for them, I just had a flat stretch of I-80 Wyoming to drive through, and I wasn't (figuratively) to Rock Springs yet.

I'm a baby. this has been suffering enough for me.

Dr. Elias' nurse reassured me that what I was feeling was not "the big one", and as long as I wasn't feverish, things were not unusual.

fucking hope they aren't precisely usual, either.

janice, lisa, kathy, and debra have all kind of been feeling poorly as well, a little cough, stomach stuff. maybe just the usual virulent Colorado winter disease pastime.

I have not moved today. edited a little Pro Tools, then just put my body away.

it's going to be ok. think I'm a little better now.

all the cancer stuff is right where it was. hope, and a scan in 5 weeks. and no sense of changing course even if that is disappointing. stay the course.

I can't help wishing I could access health, though, though healthy means. this business of health equals toxins...people around me are starting to crack. fish oil. acupuncture. exotic additives.

I wish I felt that some substance could be so blessedly completely loaded with health that it would be worth bringing it in from China and refining it, so that when it went into my body light and life and strength would shine out every pore, that I could fight illness with rightness and have done with it.

I feel that way when I eat an apple sometimes. remember? remember healthy? cold, juicy, crisp, full of sun, full of nature...like a crucifix held to the undead life in my body, dawn melting away the motionless form I have been these couple of days, replacing it with Healthy Scott.

thing is, I have a paradigm.

we do not arrive where we are meant to be by the addition of some unknown exotic even toxic additive. we don't get better stereo sound by adding expensive equalizers, processors, the latest gizmo.

we get good sound by preserving, at all costs, what is there and already perfect.

strangely, that kind of keeps me from questing for faith healers and miracle additives, while signing up for an experimental anti cancer drug. Elena Klaver says, western cures for western diseases.

she also said the only time she threw up in chemotherapy was when she took a batch of naturopathic pills. she found it quite ironic.

organic isn't exotic. organic is real. myAudioQuest cables are specialized, rarefied, way too expensive....but not exotic. they are the basics, carried to amazing lengths.

hope I feel better tomorrow

impatient admissions

I started the Yondelis/ Trebacktedin infusion at abut 4:30pm last Wednesday.

for all my fussing about the port...the permanence of it, the sensitivity, the possibility of hug abuse...those super bowl guys will have to bounce off each other's chests without my participation...the pump they sent me home with for the drug was in a fanny pack, and left both hands free. free, and without the sense of something delicate in my arm that could be messed up in a second.

and only for 24 hours, as opposed to going in each of four days. better.

it took us (meaning lisa) an hour to get from Colfax and 225 to I-25 Wednesday, another hour from there to home, in the snow. Thursday, going back to get the pump disconnected, took an hour to get home in no snow, just I-70 traffic.

the needle gong in and out of the port, though...much easier than for the scan the day before. better.

everything in this blog is going to say, better, better, better, with the sole exception of my attitude which seems stuck on comparing my present continuing situation with terminal health rather than terminal cancer.

I'd say I had about a day and a half of serious "down" time. and not as far down as Christmas, by any means. the girls say I didn't look as "grey"...better color.

I kind of stuck with my let's-see-what-this-is-like-without-additional-medications path. it's a different program/ hospital, but all the same coping drugs. Alexi, Decadron, Compazine, Zofran.

(Zofran. I'm taking an anti nausea drug named by a fan of J. D. Salinger's. high school english teachers have no idea what emotions they actually engender by forcing kids to read...)

food has seemed to be my friend this time around...body never got confused about what is nourishment, what is poison. better.

I got an email from a college compatriot, Jonathan Hutchinson, a year after me in school, who had had some heart stuff in his later years. seems this year, he was experiencing more heart symptoms, and ended up going in for a successful triple bypass surgery.

not sure what's heavier than that.

I never understood how people respond to, write about, loss and infirmity and suffering. I always thought it's hard enough to update a computer or do a gig or return a humidifier on a normal day, and that if I had to also deal with being blind or have MS, I'd just call the game on account of rain. the last thing I thought I'd choose was the great attitude, or holding on ever so much more tightly to the things I'd complained about the day before.

Jonathan said, suffering is the experience of healing, what it feels like.

he had a quote...if the only prayer we ever say is thank you, it would be enough.

I am not, not, not, not suffering. I'm the worst fucking amateur dilettante in the realms of medical horror stories. and I've gotten a major league all star never-believe-it-in-a-movie break about this new study I'm in. and real, if somewhat distant, hope.

here, as if the gentle reader could ever be in need of any such, is a model of the way I deal with a lot of stuff:

if someone were to walk up to me and shoot me on the street, I would try to walk erect, not show anything, maybe even smile, til I got around the corner. then I would collapse and writhe.

I am told, and pretty much understand why it's said, that there is no around the corner for this cancer.

I mean...I got the statistic of 11.4 months survival time from diagnosis from a study of 300 people. I am currently in a study of 3,000 people, of whom 1,800 have had at least tumor stabilization, some for as long as two years. and other therapies await when this stops working.

better.

but I may well feel like I felt this week one week every three. til it doesn't work.

oh, they will probably find an ideal lower dosage for me, and I'll learn to surf the side effects, and I can go back to the hot tub Friday, and I can still work on my worst days and be me on my best, and, and...

but it's not a rite of passage, a gauntlet, a street to walk til you get around the corner, the liver before the cherry pie.

it's tithing.

not one week out of every three...too much of that week of chemo feels not so bad to really count.

but, a tenth of every month, I'd say. of stubbornly familiar poopiness.

the bargain of all time for continuance. a game show deal, five bucks for a car, a hundred for a condo.

ouch, though.

maybe the most shocking realization I've come to about it is...tithing, cancer, poopiness...there is still, with it all, nobody I know, anywhere, with whom I would trade lives right now. I seem to appreciate me-ness more than ever. maybe no coincidence.

maybe Jonathan, hopefully suffering less and healing more every day, has some of that same feeling, even when he sees what is different now about his body and his life. maybe he and I can still pray the one important prayer...wow. God. this place of yours sure is the greatest. thank you for inviting me to stay here another day.

Wednesday morning at five o'clock as the day begins...

I have several axioms of guidance that I've coined throughout my brief lifetime.

I remember taking great comfort when I was, like, 7, and one of my enduring problems was menus with a mandate...I was not served food as much as I was sentenced to it. for most foods, I was just as happy for the assignment...my mother's hockey puck cheeseburgers, her pineapple ice which seemed to be fruit cocktail (with grapes dyed to look like cherries)frozen in ice cube trays, apricot pie, beef stroganoff, beans'n'franks, Velveeta, Miracle Whip, this log comprised of bitter chocolate cookie wafers stood on end, held together by a spackle-like hardened white creamy paste...I was too young to have ever eaten, like, actual food, and the above pleased me no end.

I accepted big glasses of milk...when I was not allowed Coke, which I would have not only put on my cereal if allowed, but probably would have IV'd on a 24 hour basis.

I even got on board with Popeye about spinach...presented in 50's seaweed style. seemed to work for him...

but asparagus, brussels sprouts (we had to go all the way to Belgium for this??), liver, cauliflower and broccoli - put as much cheese sauce on it as you want, I say it's broccoli, and I say the hell with it!

oh, I had a list, allright. and the list of foods I won't eat has grown considerably, but nothing has ever dropped off of it.

but I remember being seven, and repeating in a poetic scan: Eat the worst part first, and you'll find it better later.

it kind of helped.

I later applied the principle more generally. get the hard part over with.

I may have written the forgiving reader about Bennett's Law of Travel...when any traveling companion goes to the bathroom, everyone goes.

(or faces the embarrassment of asking to stop five minutes later when they succumb to suggestibility and have to go themselves)

or even Bennett's Cure-as-Cause Reminder, which states that, when looking for reasons a problem persists, don't leave out the things you've done to fix it. (and I usually cite, from the 1700's, Doc, I've been using the leeches for a week, but I still don't feel any stronger.)

I might not have mentioned Bennett's Rain Dance Paradigm (with secret answer C), which applies nicely to the above citation.

if the witch doctor has been doing the rain dance for three continuous hours, and there is still no rain, he has two evident choices: do it harder and faster for the next six, or decide that rain dances don't work. personally, I like secret answer C - move to Seattle.

I ruthlessly stole "secret answer C" from the Friends tv show, which is alternately a guilty pleasure for me, or one I defend vociferously.

"she asked me if that dress made her look fat. "

"and you answered her?"

"well...yeah!"

"no, no, no...never answer that question. always go for secret answer C...'get your coat, dear, we're going clothes shopping.' "

tonight's principle , however, is Bennett's Razor.

when you seek to explain why you did a surprising thing, or feel something you weren't expecting...don't neglect the blatantly obvious possibility.

why am I up? why am I not sleeping? why why why?

well, Scott, is anything singular going on for you today that might be affecting your emotions?

no. I mean, only starting the study today, seeing the 21 days off of chemo come to an end, beginning to find out if there is indeed hope on this path, signing up for a new side effect experience.

and using the port for the first major time.

the port squeaks me.

I know it's small potatoes. a metal and plastic disc the size of a quarter, though it feels like a Quarter did when I was 5, under my skin but creating a raised spot on my chest maybe 3/8"

high. instead of the PICC line, that I used for the first three rounds of chemo, into my arm, the Power Port is attached to a tube that runs into a major internal vein going to my heart.

instead of accessing other veins for blood work and chemo infusion, they just go in through the port.

they shave off half your chest hair to put it in.

I never thought my chest hair was all that. but I feel kinda half hermaphrodite now...

as long as chemo works, I'll be getting chemo. so I'm thinking the port will never, as long as it works well, come out.

I'm bionic. and I have a Matrix-like interface permanently installed, between the inner and outer worlds.

I feel like Luke Skywalker in Return of the Jedi, looking at his father who has become more machine than man, then seeing his own arm, a mechanical replacement for the one lost in battle, and knowing the Dark Side has already claimed part of him.

it squeaks me.

I am gradually surrendering to the Patient Side of the Force.

and I know it's a good day when I feel good enough not to face the possibility of no-more-me, but to complain about the small losses I have had to cancer. the scar on my neck. my hair. the ache and stiffness in my neck and shoulder, the numbness. cancelled gigs, trimmed vacation plans, Christmas Day proper feeling dim like I may feel this week, the Patient Project in general, medical fees (such as they are under this great insurance), being a flake to my friends, fatigue, nausea........

yep. all the stuff that don't matter beans when it's either that or leave the party.

I've been calling the hospital visits "me time". me, me, me, it's all about me. questions about me. how am I feeling? is this comfortable? let me know if you're cold, I'll get a warm blanket.

several days of me time coming up now. maybe a week. now, if you don't feel up to doing this gig, don't you even worry, you stay home and rest. I made you dinner, but if you don't feel like eating, just don't eat. want to stay in bed? do a puzzle? read? you just don't push yourself...

I know people who have incorporated illness into their coping mechanism, getting attention and getting out of doing stuff through it.

that hasn't been and won't be me. show me the button that would make this week one where I was full strength and had to do all the stuff I need to do for all the people I need to do it for...and then stand well back.

I've been feeling in the high ninety percents like I found and pushed that button. hence, the tallying of losses.

I'm told that most patients in the study start on the highest dose, and then it's adjusted downward to minimize toxic effects while maintaining maximum cancer fighting. this will be the worst it gets, this time...and again, advertised as nowhere near as bad as the adria and ifex I was doing.

being awake now will not help me cope with this singular day. make it harder, I 'spect.

but Bennett's Razor may just be an instance of Occam's Razor...that the simplest possible explanation for a phenomenon is right more often than some people think.

both Razors offer this advice...stop overthinking.

guess I'm up, for reasons I'm not up for.

Episode 4: A New Hope

do I explain that the first Star Wars movie, from 1977, was later renamed "Episode 4: A New Hope" (I think it was always A New Hope in the opening crawl), after Lucas became determined to make Episodes 1, 2, and 3?

do I explain that I went through three rounds of the adria and ifex chemo, and that this study with the trabacketedin will be Episode 4?

nah.

in fact, I don't usually write much during these weeks off of chemo. mostly, I'm pursuing living and continuance - i.e., trying to get some work done - and doing just about everything but ruminating over my fate.

enjoying taste coming back. enjoying uninterrupted sleep. enjoying something like strength, something like ease, something like stamina, something like usualness which has always has little normalcy to it.

I had appointments with three other doctors...Nemechek the surgeon, Davis the radiation guy, and labs at the old Chemo clinic...Monday and Tuesday.

I've been escaping from patientness since then, thank you very much.

but, looking back over the appointments, I realize how much I want doctors to be people when it comes to concern over me as a person...and how at the same time I don't want to welcome humanness in their own characters.

Dr. Elias has been running this study for 6 years. Dr. Nemechek says...Elias will be invested in the study. you have to watch out for experimenter prejudice.

Davis says, well, there has been no recurrence that we know of in the area we radiated...so...we did our job.

Nemechek says he had a good argument...the kind peer review is supposed to engender...with Dr. Klancar, the head of Hem/Onc. Andy said...he saw next to no growth under the adria/ ifex...why stop with it? once you stop you can't go back...organisms adapt. he said Dr. Klancar is an Eeyore, always seeing the negative side. it's not shrinking so we have to change...

he used the term "jump ship".

he, like all of us, like me when I've invested in a CD project for years, is proud of what he does and what his Tumor Board can do.

for me it's a no brainer.

Dr. Elias is a sarcoma expert. where Dr. Klancar gets up at 4 am to research and finds serofanib, Elias tried it two years ago and is on to more promising prospects.

if his pet study doesn't work, Dr. Elias knows six more drugs in early testing to try.

adria had, at most, nine more weeks of use. each cycle adding compound toxicity. after three more, they'd discontinue it because of risk to the heart. it hasn't been easy, and would only have gotten harder.

yondelis has no compound toxicity, less to endure than adria every round, and a proven track record.

everyone should be proud of what they do. everyone should really believe someone would be best in their hands. I do musically.

but it's resonant to me that every client, like myself, needs to take in all the recommendations, and then follow his own star, his own heart, his own stomach.

Marty McFly said (in Back to the Future), you're the Doc, Doc.

but in the sense that we have to know inside us when to follow and when to evaluate, we're the Doc. I'm the Doc.

I may not want to be. I may want it to be like the 50's doctor/ patient role, where I take my cod liver oil and grimace, and go out to play in a few days.

but even leaving aside all my medical conspiracy theories (asterisk to come) about overprescribing and numbing busyness, everyone's going to be human, and maybe even a little territorial. like any other field...and more importantly than any other field...the patient keeps his eyes and his heart open, looks at several menus before ordering, and ask for what his stomach says he's hungry for.

so, d'ja ever see that movie Undercover Brother?

based on an internet cartoon, it's a Black-written blaxploitation movie.

they know where the good stuff is, believe me.

there's Smart Brother, the cheerful rotund guy with all the answers... Sistah Girl, the jive talking operative with a heart of gold, White She-Devil, otherwise known as the Black Man's Kryptonite,

and Conspiracy Brother.

*that's me. why didn't Ted Kennedy run for the Presidency? we don't know, but I'm certain he knew. how did Coke come to replace water as the world's drink? couldn't be that hundred billion dollar ad campaign, featuring men and women who, if they drank a batch of Coke, wouldn't look healthy enough to have been in the ads. why are health standards now so narrow that it's almost impossible to meet them? well, if you fall short, take this.

Conspiracy Brother.

"Jesus Christ? Black Man! Babe Ruth? Black Man! Madonna? ....sleeps with Black Men!"

I can relate.....

promise of Christmastime fulfilled

I'm in the study.

Dr. Elias was perhaps a little more linear in person, perhaps a little less humorous than I'd expected. linear can look good on an expert.

I told him I didn't bring a tutu, but I wore my pink shirt.

he asked what kind of music I played....I said, good.

I think he thought I misunderstood him.

this is the world's largest sarcoma study. 3000 people. 65 in Denver. 8-10% have tumor shrinkage. another 50% achieve stabilization.

Dr. Elias listed off another six or eight drugs in preliminary study that are showing promise. I would love to have written down all of their names, but it wasn't the most important thing. the most important thing was, he had an experimental drug that had a "proven track record".

that's the damn best of both worlds, I'd say.

a girl came in whose job it was to go over and explain a sheaf of papers that contained the side effects of every drug they were going to give me.

if someone sat down with you over breakfast and explained to you all of the possible hazards of every step you'd take that day, you'd jump into bed and never get out. head was kind of swimming at the end of that.

the last day of chemo had been December 23rd...they had to wait three weeks to start the program. the next Monday was the 17th...Martin Luther King's birthday. he's out of the office Tuesday.

I start Wednesday January 19th. port goes in January 14th, Friday.

tired. might finish this later. but no delays, no placebos, no trouble, I'm in!