weirdly reassuring that no one can tell me what to expect

even over and above the gigs this week, which were originally supposed to be in a non-chemo infusion week, I booked myself pretty strong with sessions and rehearsals, and didn't immediately cancel when the drug schedule was delayed a week.

I have two investments going right now: in being a patient, and in continuing my life as it is. I think having the last non-patient period of time, and the hope, which I keep trying to make relief, about the new study drug is pulling my focus to music/ relationships/ life stuff.

in any case, I left this chemo week looking like a life week on the calendar.

I didn't know what to expect, as far as what I would be able to do.

I felt a host of familiar sensations and feelings going through the infusion on Monday, felt that feeling Tuesday...among the Yondelis, Decadron, and Neulasta...of driving with one foot on the brake and one foot on the gas, the chemo drug slowing me down, the steroid keeping me up.

Wednesday was rehearsal and gig day, and save for occasional rushes of nausea, it kind of helped to have something to do.

(I seem to remember some rehearsals throughout my life with occasional rushes of nausea...oh well...)

yesterday was kind of harder. I worked on some home studio stuff, which is kind of like an audio video game, perfect for passing time when you're not feeling great, and went to a smaller rehearsal with my Lost Alamos companions. I needed to do it, and I felt useful...but more wouldn't have been better yesterday. when I got home, I needed to stay home.

last night, I woke up with "the hammer down", the expression I use for the worst of it. weak, weepy, wobbly, systemically conflicted. when a batch of drugs siphons off my health, it's hard to me to turn to more drugs for relief...I've always been kind of resistant to external means of staying myself.

I thought...the gig tomorrow two and a half hours away is going to be hard.

woke up feeling miraculously better. don't get it. want it, though.

felt the freshness of the air my little air scrubber puts out...realized that I slept my brains out...felt the touch of lisa's hand, her hair...

the thing is...directing my body's energy to the inner conflict, the cancer in my blood, using toxins in a life fostering way...it's what needs to happen, but I feel the cost of it in having a lesser appreciation of everything I love in life...the way being tired, or sick, affects most everyone...

I don't want to get through a gig. I want to enjoy it. and with gigging, part of it is enjoying the familiar imperfections that I've known through the years.

maybe the same with snow driving days, or computer tech support purgatory...even the stuff we tear our hair out over, the furnace in "A Christmas Story", or the bannister knob in "It's A Wonderful Life"...

it's our stuff. our life. comes down to it, we want it in the worst way.

but we've all had a cold...probably all had an operation...many, maybe most these days have some kind of ongoing condition...and when our energy goes to an internal fight, we can have the feeling of not being as keen for some of the stuff we usually get excited over. little things...sometimes less little things.

waking up today not worse but better, thinking...bet the drive will be beautiful today...seeing the morning light insinuating its way through the blinds...

I don't know what to expect. when I'll feel good, when I won't. they don't know what to tell me...well...they know and they tell me and it's as reliable as Weatherman Bowman.

it's great. for one, I'd rather be surprised. secondly, when my prognosis is as fatalistic as it is, it's very reassuring that nothing else anyone has said to me has turned out to be very predictive.

third...people ask me when I will be done with chemo. the docs "tell me", never. as long as it works, we're going to do it.

so what I'm feeling in a chemo week is what I can expect to feel every third week of my life. I have some interest in finding out just what that will be like.

and I don't want to think about stopping because it's not working. I'll think about, "well, duh, I don't know why your cancer went away, why you're still ok, come back in a few months and we'll have another look at you..."

but this is a charmed period for me, before the first test scan for the effects of the Yondelis. in a couple of weeks, we'll have a sense of how much effect it's having. good news would be kind of the first good news there's been. bad news will be kind of like, well, guess we'll give it a little longer to start kicking butt.

but I think I'll be moving into a new realm of being a patient at that point. now, I'm enjoined to stay in an ignorant bliss about what might happen two weeks from now.

today, I'm getting a break from the Scylla of the chemo and the Charybdis of the cancer. and have a beautiful day to take a mountain drive in.

it's enough to take one's mind off Sondheim. maybe even Spiderman.

so it's like when the dentist's office calls

and says, our computers are down...we're closing for a few days...we need to delay your appointment til next week.

(obviously a PC system)

your dental problem won't get any better in a week. and every bit of the "pressure" ("ok. now you're going to feel a little pressure...") still has to be gone through.

but who among us doesn't feel like they've escaped something!

when I went in yesterday for round two of the Yondelis chemo, the labs had to be done again, as one indicator in my blood work was slightly under what the study considers the minimum to get the treatment.

they had me walk for about two minutes, to get my heart rate up, and took the labs again. still the same reading.

so they said they needed to wait a week to start the second round.

now, this week involved a lot of musical stuff I wouldn't even have considered on the old chemo...two shows and a rehearsal...that I was just going to put my head down, explore a little more antinausea medicine than I'd let myself have previous, and git 'er done.

I'll be smiling through those shows now.

yes, yes, having the maximum effect on the cancer is the most important thing. yes, there is some disappointment. yes, a lot of next week's scheduling got rearranged. and, yes, there's are two important shows next week as well that won't be quite the snap they were going to be.

but...can't I feel a little elated?

let's say that you could schedule getting a cold.

and you say, ok, may as well do it next Wednesday.

and Wednesday the ministry of colds says, oh, turns out we can't do it today anyway, have to do it next week.

wouldn't you have kind of a charmed week?

I'm having kind of a charmed week...at least til Monday, when we see if the levels are high enough yet, and I get the infusion if they are.

but...and it's about to get slightly technical medical...whereas the study for some reason cannot give Neulasta, a kind of miracle drug for supporting the immune system and getting blood levels up, after the first round, they give it to about 80% of the patients starting at the second round. so I'll have that help this time. and the nurse said the first dose of Yondelis is the highest for most patients, and the dose is usually lowered after that...I'll be getting a lower dose next time.

now, would the anti cancer effect be greater had I stayed on the higher dose? maybe not if I couldn't ward off infections and had to stop treatment. do I get some relief from the thought that the chemo might be a little easier on me? indeed I do.

what it comes down to is...I have to trust that these people know what's best for me.

if I do, then if what's best for me is...easier...I can enjoy that with a clear conscience.

for those gentle readers who follow this blog for the non-medical writings, here's the dark joke of the day, before I go on:

I hear there is one entertainer who starts all of his shows now with a moment of silence for the men and women who put their lives at risk for all of us every day...the cast of the Spiderman musical.

that joke was in an article on the front page of last Sunday's New York Times. along with others darker and not as funny. it went on to say that one of the female leads...I'm thinking the floating Arachne character...quit the show without comment in late December, and received an undisclosed amount of money.

the article quoted the show business axiom, all publicity is good publicity. but if that were always true, I'm not sure you pay someone not to talk about the show...

it also featured a quote by someone who "loved the new ending".

yes, I'm curious. yes, I'd go see it today. yes, the new ending had better involve at least half of the second act.

there is a cadre of Broadway followers who trade stories and collect one-upmanship points for having seen the worst plays ever to grace a Broadway stage.

I think that, in addition to being bad, these plays also have to have been short runs, financial failures. I don't think you get points for talking about "Cats", which I feel delivers everything a theatre experience possibly can which contains no characters nor shred of a plot whatsoever.

nor do I think they discuss "Merrily We Roll Along", my favorite Sondheim musical, which closed its original run after eight performances. performances, by the way, which rank second to The Beatles' first appearance on Ed Sullivan as where I would sign up to be present when the time machine gets invented. (I sometimes try to imagine how full that theatre was of visiting time travelers...)

http://www.broadwayspace.com/page/top-10-broadway-flops

well, there you have it, the idea of "top ten flops" pretty much bears all of this out. I guess the single most referred to example is "Carrie:The Musical", which lost $7 million and closed in a week. lot of special effects money. "Merrily" also makes the list, though a commenter says that a play produced as often as "Merrily" still is, is probably nobody's flop.

ok...I can't resist a small comment..."Merrily We Roll Along" shows how a group of friends...a successful hack, a Pulitzer Prize winning contrarian, and a woman who chooses for her talent to go largely unrealized...come to their troubled present lives by showing their stories backwards through time, ending with the scene where they meet as idealistic youth.

yes, the audience is credited with a lot of intelligence, to be expected to follow it. the effect is devastating, though.

and Sondheim, whose music takes on the character of the story being told, has an excuse to write tuneful, sharp, witty songs in the genre he most loves, Broadway Broadway, as the characters are successful musical writers. but it doesn't stop him from writing their first hit, "Good Thing Going", chock full of early songwriter mistakes! mostly beginning lyricist mistakes...I don't detect any deliberate musical gaffes. but Frank Sinatra recorded this song! and it has terrible lyrical problems! stuff Sondheim would never let pass!

first line: "It started out like a song"

"When our love started, it was like a song." that's what the line wants to say.

but it's not an acceptable construction for a simile. there's something missing..."like a song does"? "like a song starts out"?

check out the bridge:

And if I wanted too much,
Was that such
A mistake
At the time?
You never wanted enough —
All right, tough,
I don't make
That a crime.

when I hear that, I'm hearing a car trying to start, turning over and over, but never catching. the rhymes are consistent...and it has the virtue that we know just what is being said...but "I don't make that a crime?" "Officer, I'm just out for a walk...that ain't a crime, is it?" this we've heard. "I don't consider that a crime"...maybe closer. ok, the rhyme scheme is demanding, but Sondheim says, it doesn't matter how much you love the scan or the rhyme...if it doesn't say what it's supposed to say, you have to let it go, or work on it til it does.

verse three

And while it's going along,
You take for granted some love
Will wear away.
We took for granted a lot,
But still I say:
It could have kept on growing,
Instead of just kept on.
We had a good thing going,
Going,
Gone.

not even Frank Sinatra, at the most drunken Rat Pack brawl, would ever say, "We took for granted a lot". Yoda, maybe.

and it's far from incomprehensible...but these few lines oblige the listener to assign roles to "you", "we", "I", "it"...it's hard to track that many characters in a half hour episode of "Friends", let alone eight lines you hear once in a theatre.

I just think it's fascinating that someone would write the first hit song of a talented songwriting team including beginning songwriter mistakes.

I get carried away. it's my kind of flop. will "Merrily" share a slot on some future top ten list with "Spiderman"? it all depends on whether the world contains enough irony coupons to pay for something like that.

that feeling you get Sunday morning when church or jogging or laundry calls, but your body just doesn't have the will to move yet...I've been having that a lot. I remember my mother using the world's first invented remote control...a child...and having me go downstairs or upstairs for something she couldn't face moving to get. I never wanted to be that way. maybe I'm not yet.

but I've felt tired, and less like moving.

I used to love to calm down with an hour in the hot tub...then go exercise. but more than twenty minutes kind of wipes me out now...though I still exercise afterwards...ran for half an hour the last two nights with very light weights for arm exercise...

I'm me. and I'm not dim. the hair on my head is growing, and lots of little shoots are starting to pop up.

these are the good days.

Indiana Jones, says Kate Capshaw in "Temple of Doom", you're going to get killed chasing after your damn fortune and glory!

maybe, says Indy. but not today.