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.