Christmas

the last day of radiation today was Christmas.

Christmas Day brings squeals of delight, immediate bounty, the heart's desire manifested in the real.

and the present of the completion of this treatment is continuation, all of the above and more, additional years.

but that's not why today was Christmas. a lot of the presents I can't open yet...being able to sing again, being able to taste again, being able to watch a tennis game again (and see both courts). lessening fatigue, and each day's healing accruing, rather than sitting up on the canvas only to be knocked back down again.

Christmas Day is the symbol of the rebirth of the year, is remembered for one particular birth. and the end of radiation can certainly be seen as a rebirth in my life. I feel a gestalt with the world, more of a solid part of the ongoing flow of people's lives, rather than the concern of preserving life itself.

but that's not it, either.

we celebrate on the longest night, the shortest and coldest day, of the year...it would be great if we did that because even on that day, life holds all of its promise, and there is no less reason for faith on a hard day than on a good day.

I don't think that's it, though.

I think we celebrate on the 21st...ish...because we damn well need to. because without something really great to look forward to on that day...it just seems like a global case of PMS.

I think it's genius to put the big holiday of the year right smack dab where we need it most.

that's why the end of six weeks of radiation today seems like Christmas to me. because this is the most faded out I'm going to feel. this is as bad as the side effects get. this is the shortest, dimmest day.

and the very nature of that is the cause for celebration. no more one step forward, 1.7 steps back. the sun will increase on every day...predictions of how much how fast vary, but it is certain to be just so. soon, I'll be again able to sing all the songs no one wants to hear...Feelings...There's 18 Wheels on a Big Rig...The Strawberry Roan...Don't Wait Up for the Shrimp Boat, Mama, I'm Coming Home with the Crabs...

and there was mixed rejoicing throughout the land...

no more trying to fill a sieve. everything I pour into my health is going to stay there.

it's a blessed comfort on the shadowiest day of the process.

a sort of comfort that pisses me off has come from everyone who, now that I'm coming to the end, started telling me the radiation horror stories they've heard through the grade school game of telephone line.

"my brother said that his doctor said that 75% of all patients who undergo radiation don't complete the treatment...and that 97% require the feeding tube"

so...you're telling me this...now?

Dr. Davis, who is not afraid to use actual words, said that virtually 100% of the people in his program complete. and that once completed, the treatment has "a very high success rate." and that after five years, the chance of recurrence is "virtually zero"

he's the guy who said, "most of the time, we can get this thing."

sidebar...language inflation in general pisses me off.

I define language inflation as the use of a word of lesser value to do the work of a word of greater value.

"well, how was your first trip on the time machine?" "interesting"

interesting?? there is enough of interest in any three snowflakes to keep a team of geniuses spellbound for the rest of their lives. how about amazing, nonpareil, fascinating, singular?

it isn't cooler. it isn't safer. live, feel, say, dammit.

Christy uses the word "fabulous" constantly. people in her world are often "excellent." when things are unbelievable to her, she calls them unbelievable.

occasionally, "so how was the drive over?" "it was fabulous!" but ya know what? I like that worlds better than "Spock Talk".

Dr. Davis uses the potent words. no stagflation there. and it gives me a lot of hope. but some of that hope is hoping that he's giving fair value dollar for dollar...not using "virtually zero" when a truer truth would be, "pretty darn good".

(by the way, PMS in my private vocabulary is short for "Pretty Much Sucks". it gives me access to a demi-universally understood term)

but the point way back there was: I'm the luckiest guy who ever ran this particular gauntlet. it is much much worse for many many people, and only this bad for not very many at all.

it helps that we were only focusing on one side of the neck. also, the docs and techs seem to think that I have a real resistance to the radiation, due to genetics and health habits and such.

little of that falls outside of the category of luck, to me.

I just hope that I don't generate genetically advantaged, healthy living strengthened cancer cells as well. I hope they're slackers. beatniks. Gen-X-ers. I hope they've spent the last six weeks going, we just want to live, but it's too much damn trouble. I hope they've been reading Sartre.

I hope they've been little Redd Foxx cells, crying out, this is it, Elizabeth, it's the big one!

I'll take the karma.

I brought Dr. Davis' and Dr. Nemechek's staffs full sugar lisamade chocolate chip cookies to celebrate.

they gave me a pin in commemoration. it says...courage.

in the misty mist or the dusky dusk...though others have displayed far more than I had to...I'll take the pin too.

kathy took a picture of it...I'll try to post it.

Tom Sawyer

never once asked Huck Finn, so, how you feelin' today?

what a stupid question when you're ten years old.

how'd you sleep? what do you mean, how'd I sleep? I ran until I dropped, in an unimaginably uncomfortable position, totally lost consciousness for ten hours, woke up and started running some more.

how's your diet? are you eating ok? well, I've been thinking of playing around with my ratio of Ring Dings to Devil Dogs, see if that helps me feel any better...

are you getting enough exercise?

I don't know what it's like being ten now, in the world of XBox360...that might be a valid question. when I was (not) growing up, and probably even more for Huck and Tom, it is like asking, are you getting enough air? motion was the medium a kid's life was carved out of.

how's your regularity?

the other kid would look at me and say, "what's wrong with you?"

I'm pleased to report that, in my present circle of playground buddies, that question would still get the same response. but though I forget which movie (one with old people becoming young), I remember well the last line spoken by an octogenarian character:

"I'm going to the bathroom.

wish me luck."

I said to myself, n.b. this is what's ahead.

at thirty, we might have greeted a friend after a spell of absence with some form of, so, how you doin'? how's it goin'? how you feelin'?

good, good. fine. hangin' in there. I'm ok.

13 seconds tops.

in ensuing hours of conversation, there might be a short roll call. "did you hear about Doug, he got drunk and was in that horrible car accident...can't believe Jerry Garcia is getting grey hair, what's the world coming to? so Johnny Carson died, pretty weird..."

the point (as if I needed one, because this is my medical blog, thank you very much) is that reporting about my health these days takes a long winded computer supported wordstorm.

better still, I need the model of the NYSE.

"at closing today, sore throat was up 1 and 3/8, shoulder pain down a half, SCM made a solid gain in the morning but finished even. panic selling led to a precipitous drop in vocal ability, while fatigue continues its steady growth."

I am so on the downhill side, seeing the end of the woods if not out of them. the worst predictions did not come true and seem increasingly unlikely, and I have not yet cancelled anything during the radiation for not being able to do it.

so I think it makes plenty of sense for this to be a fine time for me to say: I have been losing ground in a batch of major indices for what seems like a long long while, I feel the worst I have since the radiation started (by a little), and I'm more than a little tired of it.

ouch, dammit!

can I have just a moment, instead of always being grateful that I "only" lost this instead of that, to say that I notice I'm not a healthy ten year old, a busy thirty year old, a nicely working fifty seven year old anymore?

I'm not a hundred percenter anymore. some stuff will never come back. and I don't know how much.

and however long it is til I can taste food again, and dry mouth goes away, and the scar hardly shows, and the lymph swelling stops giving another layer of turkey to my neck, and I can turn my head comfortably and I can lay comfortably and I can sleep uninterrupted and the cough goes away and an hour and a half five days a week isn't spent going to radiation, and I can leave town for a few days, and I can go outside without sunblock 2000 and radiation dermatitis cream three times a day, and I am only as tired as I make myself, and exercise makes sense again, and I can go back to low fat food, and I don't feel some kind of odd radioactive debility, and I can sing again...

well...I could never really sing...

but, however bloody long that takes is still too bloody long.

the girls have been amazing about adjusting their lives to living with a spook. but they are ready for me not to be a dimmer more fragile version of me as well, I suspect.

it is the very fact that I have five treatments left, a weekend, then two more, that this six month health phase of my life is going to start phasing out in just a week and a half, that makes it possible for me to take a second and say...this has not been my favorite movie, and I'm ready for it to have a happy ending.

and tighter editing.

ptui.

heal, heal rock and roll

I got no good news at the radiation doctor's yesterday.

but I got a good prediction.

I'm not supposed to put any stock in predictions anymore. but...maybe I want to.

Dr. Davis said, usually, if a patient is going to be experiencing the extreme side effects, they are experiencing them now.

he said, the good thing about this program is that we are only aiming at one side of the neck. it is usually the ones who need both sides irradiated that feel the worst abut it.

(you know, technically, those are not predictions...)

he said, I predict that things will get a little worse over these next two weeks, but not out of bounds.

what a relief it would be if that were true! it would kind of feel like the things all the nurse techs are telling me won't so much happen...like yesterday is some sort of apex of the sine wave of poopiness, and the distance back to health could be less than the distance so far.

not like, I've made it!, but, like, I've made it. I'm not sayin'...I'm just sayin'...

21 sessions out of thirty down. two, five, and two to go. thirteen days, with four off.

then I stop measuring things by getting through, or getting by, and have to adopt the standard of all the way back to normal.

I'm fascinated, as some of you know too well, with Brian Wilson of The Beach Boys. he seems to me like Icarus, who flew too close to the sun of musical brilliance, and when he found his support wings melting, crashed back to earth never to be the same again.

in the 80's he fell under the care of a classic betrayer-protector, Dr. Eugene Landy. Landy saved Brian's life...and had a fifty phone call a day hold on him. when Brian's solo album got made, Landy was credited as co author on the songs.

when Landy found Brian Wilson, Brian had been in bed for a year and a half (love not having an alarm) and weighed 350 pounds. Landy controlled Brian's access to food and any sort of rewards, and put him on a strict diet and exercise regimen. in a year or so, Brian was 185 pounds...and recording...but no happier and no more mentally healed.

there was a nearby hill that Brian would walk up and down, eventually coming closer to jogging.

after a prolonged period of repeatedly climbing it, the two nicknamed it Mt. Wilson.

to be on the top of Mt. Wilson, and finally ready to start the hike back down.......

I made up a joke

what's the difference between a doctor's predictions and a weatherman's predictions?

well, meteorology is a science.

it's been ten days, gentle reader, since my last entry detailing the changing and adding to of the predictions of radiation's effects on me over the weeks.

since then, I don't perceive any of the effects to have gotten any worse.

Dr. Davis yesterday predicted that I would "eke out" the radiation without having to resort to having a feeding tube. kind of a change from last week.

I'd be frustrated if I weren't so damn relieved.

I mean...what if the radiation dose and location had been chosen so that, in a day, I can kind of recover and maintain, instead of getting hellishly worse over weeks' time?

do I even dare say that?

Jim Jones called me a few days ago, and again yesterday...Vickie wrote me an email yesterday. they hadn't heard from me, and noticed it had been awhile since I had blogged, and they are saints about wanting to give me space to heal (as they are in all things) but were understandably concerned.

for a change, the explanation is...I've been doing a low level imitation of Scott Bennett these days. three doubles this week, two singles.

now, my voice is like your arm when you pull a muscle. this movement is ok. this one not so bad. this other one...forget it! you're just not picking up that glass of water today.

but with the indulgence of all, and occasional cartage help, I'm picking and grinning in a somewhat familiar fashion.

but, gee, what if things get worse, and what if you get tired, and what if your voice completely disappears and and and

what if it doesn't? is that something I can even think about without bringing on the jinx?

today is treatment 18 of 30 rad treatments. (awesome!) three and a half weeks...about the time to start watching for fatigue.

woke up after five hours sleep, eyes wide open. writing here in the morning. hmmmm.

happy July Fools' day to all, and time for a good nap this afternoon.

Stewart Greisman, my secret ace in the hole in all things medical and stalwart musical compadre, said that throughout medical school they told him, 90% of the people you treat will get well, despite your treatment.

he said, why do you think they call it practice?

call me naive, but I am going to pretend that their practice differs from my practice. if it doesn't, I'm going to start reading up on my Mary Baker Eddy.

(reminiscent of Tom Lehrer's observation that someone who supported our government in the 1960's often felt like a Christian Scientist with appendicitis. Tom is the author of three of the five most intelligent things I've ever heard said)

the beauty and curse of these days is that they come and go. I can't remember a prettier summer. I've had to "get through" some things while enjoying them that in other days I could just have enjoyed. though my capacity to taste is in a small way dimininshed, I am aware that I need to eat all I can of everything I love most to eat.

the scare last week was scary. but today I may well be forgiven if I start to look to the end of radiation (still 20 days away...but only 12 treatments after today)

and at the end of radiation...the prayer that it worked. the possibility of recurrence of the tumor.

I'm so not even ready to deal with that right now. maybe today will be fine after all, thank you very much.