this is it.

everyone faces this. I'm facing it now.

meeting with the hematology oncology doctor today.

she said what you read in the 2000 study online is still pretty much true. median life expectancy still holds. treatment hasn't advanced from what they said...she recommended the chemotherapy drugs, with some additions, they named in the study.

she said she knew of patients who had what I had that defied the odds. but, when I pressed, she didn't repeat it very loudly. she made clear to me...there is no cure. and high odds against successful management.

she was kind of shaken. she said everyone...Dr. Nemechek, Dr. Marsh...very shaken.

maybe that's why I didn't get a very clear picture from what she said...didn't feel she had very delineated thoughts. Andy always does, even at his worst moments. I'm spoiled.

I asked the mobility question Andy had brought up...is there any reason to look for new developments around the world, specialized centers? she said, well...no one is better than M.D. Anderson in Houston (where Chris Daniels went...so doctorfied their name is even M.D.), and if you went down there now, they'd recommend the exact same thing, and that you come back here and get it.

so medical world travelling is out, for now.

Brenda is the nurse in the trenches who had all the details. caring, no nonsense, clear. I was relieved when talking to her, to find the clarity I needed.

she made clear something I hadn't put together.

that, instead of doing chemotherapy until it works, if it works you keep doing it.

a round of chemo for me is going to be four days on, then the rest of three weeks 'til the next round. they don't repeat it more than six times, as the body tolerates it less and less and there is danger to the heart.

they do a scan after the first two rounds. if there is "response" from the tumors, they do it again. if not...another form of chemo.

Hematology Oncology means that the tumor is in my blood.

it doesn't mean, he's on call all the time. gee.

if there are six rounds of chemo and the tumor is still "responding" (RSVP) then they would keep going with it except for the danger. but they switch to a "second line" therapy, which is much less damaging, one day in three weeks, and hope it holds as well.

the grey lining in today's meeting is that they said, you won't be bedridden. you will feel tired. the down days will be the three right after the fourth day of chemo...day 1-4, chemo, day 4-6, down days, then better til 21.

what about the legendary throwing up, I said? they said they manage that really well these days. they give you IV anti-nausea medication, then an oral pill, then a stronger option in case that one doesn't work, and a third even stronger if that doesn't. throwing up they said is not an option...we don't want you to be doing that.

ok.

......wish it didn't sound so much like what they told me about radiation...

they were going to start me monday.

I told them about the trip to california I had had planned, Nov.6- 18...seeing Sondheim speak on the 7th.

Dr. Krancar (pronounced "cranchar") asked me to consider postponing chemo for a week, and doing some part of the trip. she said a week is not going to make much any difference at all to the tumors.

ok, in my life in music, I have never found any two things identical. I've never found anything that didn't make a difference.

Dr. Nemechek was vociferous about doing something now.

but Brenda said the same thing. and, in the picture she painted of continuing chemo, which the body tolerates less and less...the advantages of doing something now while I feel good started to emerge.

I agreed to start the ninth of November. janice and I will fly out wednesday or so, come back monday the eighth. have my birthday in L.A.

I can play the sunday gig with The Modniks...but I am choosing to go to california instead of doing the Bent Roses album release party on my birthday, the 5th. I'm truly sorry, Bill.

Bill said, do what you gotta do.

I can see being able to do recording sessions almost throughout ...if the descriptions they gave me are at all accurate. can see hanging on to Ellen Klaver's project, the UnAssisted Living cd, the Lost Alamos cd.

timing also seems fortuitous for some kind of participation in The ReJuveniles Little Bear gig on November 20th. Thanksgiving will fall on a good week.

Christmas might be right around the first scan.

this is it.

this is it.

this is it.

this is it.

I've been to the Swedish Radiology parking lot maybe 40 times. I never saw what I saw when I came out today.

a red, hexagonal sign with clear white letters:

Never

Stop

Brenda said...don't go by that study's median survival rate. there are too many different types of sarcomas. it's impossible to predict.

her words are a bead on a rosary string I am building, of all the right words. like the never-stop-sign.

Andy said, you're what we call in the office a head scratcher. we look at you and go, how...why...what...

well, I've been that all my life.

now I'm going to be that again.

how in the hell is he still here?

done with predictions. flat done with them.

the Gentle Reader mustn't think he and she can't do anything, give me anything.

you never know which of your words will be a bead on my rosary.

you also mustn't think that pulling me towards my life...as opposed to just life...that singing goofy songs, having musical experiences, showing me parts of the involvement with life you have...is irrelevant, irreverent, unneeded.

for life to continue for me, my life must continue for me. musical ventures not a reminiscence of what my life was, but my life itself. laughter. love. fun. geekyness.

I'll be at the picture taking session for The ReJuveniles promo package saturday. and I'll still have my hair. Jim Jones isn't backing off the campaign to get gigs. I'll hold and count that bead.

and I need to model those pantheons of positivity, the Rolling Stones.

when did the Stones do the first tour the media said was their last? the seventies? eighties? nineties? the ought-naughts?

they will never do the farewell tour.

Keith, is this your farewell tour? yeah this and the next three...

is this my last day of feeling good? my last winter? my last Little Bear?

nope.

not going there.

it is a day of feeling good. it is winter. it is the Little Bear.

it is the continuation on my life. and life itself for me.

no matter what dark shadow happens in a day...the arrival of the new day finds us a little more accepting of it, a little better prepared to cope with it, a little bit around the corner from the shadow.

I am asking everyone they know if they are done with me yet.

if not...I had better well be here in the future.

Sandy Buckles said...hell, I haven't even started with you yet.

feeling the bead pass through my hand, as I pray

full disclosure

of what I don't know.

I won't know much for sure 'til my meeting with the Hematology Oncology doctor at Swedish, Lillian Klancar, tomorrow.

then I won't know much more than a prediction and a plan.

predictions abound on the internet.

the one that took my legs out from under me said that the median time of survival, from diagnosis (last Tuesday), for Metastatic Sarcoma, was 11.6 months.

the overview it came from, very professional and learned, came from 2000.

http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=cmed&part=A32374

just about the first thing you Google.

I didn't want to give that figure undue potency, so at first I spared the longsuffering reader of this blog. but I ended up telling everyone I talked to. and this morning...if I have to read that stuff, you have to read that stuff.

I think the thought is that if the tumor metatstasizes...goes from one part of the body to another...it's through the blood. and the blood goes everywhere.

I've been trying to be a good guy since April. but this just took my legs out from under me.

I always liken thought management to standing at a cliff's edge.

you have as much chance of falling over as you have of falling over out of nowhere standing on the street.

but the consequences would usually...depending on how busy the street was...be a lot more dire. and so the suggestion of falling is more virulent. harder to keep away, out of your mind.

but the discipline that keeps that suggestion at bay, and enables you to enjoy the view and not self fulfill, is the discipline needed for a positive attitude in the face of trouble.

I've been pretty good at it.

but yesterday, I was confronted with helpful thoughts like, today and tomorrow are my last good days. and, why would anyone rehearse with me now? and, it'll be good for me to do music and things I love from my former life.

my friends/ family (the distinction is seeming to blur) are bringing me up short about that.

Jim Jones was having none of it. he's been spearheading a new promotional package for The ReJuveniles, including a picture session on Saturday. he says, everything is as it was...told me, you gotta fight, man. Positive attitude is the most important thing, and you're the best at it.

he's fought through some physical stuff in his life. he should know.

Ken, when I told him about the 2000 study, said that ten years medical research time is like 50 years normal time. (I don't know if there was a parallel drawn between physicians and dogs, or real minutes and football time after the 2 minute warning) he said he had read of very new lung cancer modalities that had had a 30% success rate.

Stewart being at a complete loss for words spoke volumes.

lisa told me...ya gotta fight.

today, here's what it seems to come down to.

we are all given a chance, every day, to live or not to live, to make the day we are meant for that day or to choose away.

seems like a no brainer. like putting money you may not have enjoyed earning into a slot machine.

but people do it, as if to say, I don't have to face the limited supply of this money/ these days, I can piss it away and stay in denial, have control over it.

but gambling is the opposite of control. and the faces at the machines show the opposite of excitement. more like numbing.

yesterday, I set up for taking some videos with my Lost Alamos companions.

it wasn't the greatest day imaginable to shoot. all of our eyes were probably a little more glistening than previous days.

but it was a gift of a day, and goes in the win column.

more of the same today.

but today I have a little more resilience.

they want a fight, do they? (not Lost Alamos. "them")

I didn't want a fight. but if they do, I'm going to be there. these days are mine. they can't have them.

I did better on the first surgery than anyone expected. I did better after the second surgery than anyone expected. I did better with radiation than anyone expected.

and I have fucking had it with predictions. had it. do I make myself clear? today was supposed to be cold and cloudy, and it is the brightest day on record.

maybe, just maybe, you picked on the wrong guy for your numbers game.

in any case, these days are too good to throw them after bad. every day needs the best made of it, the number of days irregardless.

death, infirmity, health troubles have been a source of major denial in my life.

they squeaked me. had trouble looking right at them.

you see the accident on the roadside...someone you know develops health problems. someone you were in love with dies. you hear the siren late at night.

distant thunder. distant lightning. yeah, that stuff happens to those people way out there. especially the ones not as smart, not as healthy, not as well seeded, not as young...

when John Lennon was killed, I went three days without singing a Beatles song. it seemed like the "yeah yeah yeah" of my childhood had become a no.

the next weekend, at the gig, it seemed more important to sing those songs than ever.

it seems that the absolute all time A number one top of the heap increaser of appreciation for life is death.

what if we give credit where credit is due?

I will have a chance every day, in some way, to sing those songs, add to the new songs, to sing my song.

I need to hold that chance. use it.

I've been telling everyone I need more help than just from doctors. I need songwriters, philosophers. I need connection to The Human Endeavor, and my little corner of it.

I need people telling me what I know. I gotta fight. I gotta stay on the cliff.

I have to not be over.

like the sixties, it ain't over until I say it's over.

new blog tomorrow.

still life

it's still life.

fighting for one's life, I believe, is still life.

life, just to be able to be here, isn't all we want. life isn't set up that way...we aren't set up that way. when continuation isn't threatened (more than it is for any of us at any time), we rise and fall according to the life we seek to make for ourselves, over and above life itself.

life isn't all we want.

but when we are fighting for it, it seems like all we want, all we could ever want.

the scan yesterday was trouble.

the neck area on both the MRI and the C-T (did a Jewish guy name that reverentially, after not wanting to dare to invoke the name of G-D?) were cloudy. we hope the white areas are good old fashioned scar tissue. if that had been all there was, it would have been at the shortest three months of, go live and come back for a scan where we hope to see more, Seymour.

but there were a half a dozen spots showing up in my lungs.

that weren't there in the PET scan (very expensive for the amount of evaporated milk it consumes) in May.

this isn't normal, Dr. Nemechek kept saying.

and once...that is one pissed off tumor.

Metastatic Sarcoma.

google it if you want to. I did. it isn't pretty.

I'm not going to recount the online prognosis here...you're going to have to wait, like I am, 'til Thursday.

'til then, everything's on hold. was going to go to California from November 6 to November 18th...that's in serious question now.

it takes a lot for me not to tell you everything, dear reader, who did not have to take on one more person's burden but chose to anyway. you deserve disclosure. and you will get it after my appointment.

I don't want to be responsible for a War-of-the-Worlds-like panic in the streets. especially prematurely. plenty of time to panic after Thursday.

today, it's still life. I feel healthy and like myself. and I have a choice...to let that in and love it, or throw it away.

it'll probably be some of each....