Indignity #12-the Feeding Tube

Dignity comes from the Latin dignitas- a word indicating that something is worthy of respect, both honored and honorable. One of cancer's many charms is that it pretty quickly chips away at the foundations of dignity. All your assumptions about your body as inviolable and about your person being your own just don't hold any more. You are now a battlefield for a particularly ugly kind of war between tumors and chemists and frankly, my dear, neither side gives a rat's ass about you.
So you are invaded, bombarded, poked, sampled and trampled. Here's the latest: food is so disgusting to me these days that I can barely eat. I've gone from 170 lbs to 153. (78 to 69kg.)
)On top of that, my mouth is so dry that anything that goes in it feels like dust. I'm losing weight at about a pound a day. Now normally, neither Bonaparte or Wellington cares, but it turns out my losing weight means that I'm living off myself. At first it was my own fat, but we're out of fat now so it's a diet of lean me. The reason this matters is that all that yummy Lynn-protein could give a false reading of kidney health which could lead to an overdose of platinum (platinum!) in my next chemo-.
Now of course no respectable invading army would let that happen, so before my skin folds start flapping in the breeze, General Wellingparte has a plan. His plan is to insert a feeding tube in my chest that pokes a hole in my stomach and to use that to pump food into me.
Forgive my delicacy here, but I'm horrified. You're going to stick a hose in me. I don't think so. Naturally, I  have the final say but they do have a point. Former students of mine who have listened to my stove-side rants about good food will be happy to hear that I now decide my menu based on caloric-density and my favorite flavor is milk chocolate.

Broken Records

I've been going on for a while now about my frustration. It seems that it's impossible to find out what cancer treatments work, how they ought to be administered and what one's chances are of living through the whole damn thing. I've been blaming the doctors, which is partially right (they should at least have a hunch). What I've been missing out on is that in a really fundamental way, no one knows what survival rates are.
We don't know because there are no uniform records kept. Right. Nobody lists the 3.2 million cases of this or that and then follows up to see what happened. Why not? Because insurance companies have lobbied against uniform records. Why? Well, suppose you knew that hospital A had a 90% survival rate and B had a 70% rate. You and every other citizen would be over at A and B would be closed or at least in big trouble. Lotsa docs outta work there and we can't have that, can we?

But wait, there's more. If we could compare outcomes-could see that treatment Z is better than treatment Y then we wouldn't buy insurance that didn't cover Z. And the insurance company that offered/covered only Y would have to cut rates or pay for better treatment. In short, my dear ones, the insurance companies don't want you to know how good your hospital is and they surely don't want you to know how lethal your insurance might be. Comprehensive medical records-and the research they would generate- could result in everybody getting the best treatment available, but it's not in the insurers' best interests.
Is there any solution to the problem? Stay tuned.

What gets me there

Every morning about 11:30, I climb into my Acme Re-insifrinator. It’s the new model. I press a few buttons, double check it with my iPhone and then hit SEND.
About 12 minutes later, my molecules have been reassembled in the basement of the Fahrquar Building at Fox Chase and the radiation begins.

Not really. What actually happens is that every day I have to be driven to Fox Chase and then fetched back home again. I tried driving myself once-it was a big mistake and ...well, let’s all be grateful that noon is not a time when there’s a lot of schoolbuses on the road.
So everymorning someone has to drive me there, wait around and bring me back. It’s an hour and a half investment on a good day. On a bad day it can be five or six.As a cab ride it’s half a c-note plus so mostly I depend on the kindness of my friends.
 J is my most frequent driver and she is burning up her vacation days catering to me and my cancer. I’ll tell you more about her later. The next guy is my friend Hugh Gilmore. Hugh is a writer, book collector, storytell and amazing photographer who throws away more picture-genius in a day than most people enjoy in a lifetime. Most of the best pictures on this site are his.
The thing about Gilmore’s generosity is that he barely lets you notice that it’s there. Something almost makes me think that I’m doing him the favor and not the other way ‘round. This is a gift. I covet that ability but I barely have it and I don’t see it that often in others.
There are others too, Bonnie, Delores and Chrissa but you’ll have to come back for the stories on them.
Two or three times a week I get to spend some nice conversational time with him and the gift of his talk is right up there with the gift of getting my ass to radiation every day. Of course I am touched and I almost wonder if I should be grateful to the cancer for letting me lean on my friends. Maybe not you say? OK, but it’s still a damn close thing. What I feel is enormously, mushily grateful-it gets me there. Be honest, doesn't it kinda get you there too?

cancer in january

this malignant day is the testament of our permanent place
on a frozen earth-no shoots to beg, insist, demand
on sunlight, no leaf or tree to die.
today it’s cancer, swallow the stone.

it is a forever day as etched in ice as your families,
your loves, your best ideas, your many selves
the very cold is very proof.
the numbness is your promise of always-be.

what would you do if you knew
that sun would be higher in its course today
and then tomorrow and the next?

could you imagine the thaw?
what is it that lives through the death of ice?

All photos: Hugh  Gilmore

sick

i’ve been sick
and i’ve been abandoned.

and i will tell you this:
sick is better.


for the tears of sickness
taste more like cashing in
than checking out.

Halfway Flinching/Unflinching

Jerry Blavat beefcake

There was a photographer once named Ralph Eugene Meatyard. He did a lot of spooky-funny, thumb-in-your-eye photographs. Toward the end of his life-he died of cancer at 47*-he chronicled his own deterioration. The word the critics used a lot was ‘unflinching’.
I’ve been doing some self-pictures here in this blog and I have to admit to a bit of queasiness. The body I’m photographing is old and it’s now kind of scrawny and ravaged. Why am I putting it out in the world-even forcing it under people’s noses?
I remember reading an article about a Philly guy named Jerry Blavat. Jerry is one of those livin’ large guys who had a lot of fun with rock and roll, shot his car a couple of times and still keeps a job. I admire Jerry. What puzzled me was the photo-it showed 67 year old Jerry stripped to the waist. Is this the new normalization of old age or have we just lost some sense of when it’s time to cover up for publication? The truth is, I don’t know. I do know that when an aged Joe Louis was asked to strip down to boxing trunks for a Bert Stern photo, he refused and the resultant picture-gnarled brown fists coming out of a camel coat-was a better statement about the strength of old age than the photographer’s original idea.
So what am I doing here? I’m not particularly embarrassed by my wreckage but I’m afraid to be embarrassed by bad judgment, by getting the culture of cool completely wrong, by being overly revealing. I’m thinking it might be time to flinch.
And as soon as I say it, I know it’s not time to flinch, not yet. This is what cancer looks like today, October 16,2010.

155 lbs., bright red neck

Just before I started treatment, I had a Lean Body Mass Measurement done at the gym. There was 153 lbs of skinny me. Today, half-way through at 156 total, I've got about enough fat to fry three eggs.

*same age as Kerouac

Return of the Voice

Last night during the Phillies’ game, I got an email saying that poems #29 & 30 have been accepted for publication at The Centrifugal Eye. I started writing poetry about a year ago. It was nice to find another way to get heard but I thought of it as a substitute for fiction, not speech.

Here’s  poem #29:


the grasshopper in october

he hears the tremble of the ants below
as he wakes, mulled in cold that lasted past the night
they're down there hoarding life to last beyond the snow,
he sees the crystals in the thin autumnal light


Note that the grasshopper is not complaining. No word on what the crystals are-his, theirs, everyone’s.

Coincidental with this publication, my actual voice seems to be coming back. Last night I called family in Mississippi and managed conversation-even threw in some unnecessary words, made a joke or two. When my friend Peter came down from State College to visit, we sat and talked-chat, gossip, idle speculation-all splendidly unnecessary. Okay, it’s not the booming stentorian foghorn that marks me as an American no matter what language I’m speaking. It’s not even a decent cab-hailer. But I can speak a ‘graf if anyone’s listening and it only hurts a little.
Unless there’s a surprise in store, (kain aynorah) I can forget the romantic image of  the croaking mute poet and I’ll have to think of something else to scare the kids on Hallowe’en.

Tumor Down, Lynn Holding Steady

According to Dr. Galloway's calibrated finger tips, my tumor has shrunk to less than 40% of its original size. That makes it about half a centimeter in diameter. Dr. Skarbnik confirms in his soft, Brazilian accent that the sucker is on the run. They both smile as they say it.
Neither one of them is willing to suggest that we might be able to stop the radiation early though. Maybe I'll try to bargain for a chemo-reduction.

160 lbs., 15 pushups, lots of pills

The button taped to my chest says 'heal'. My friend Ashley Baptiste passed it on to me by way of an exhibit about women who had been brutalized in Mexican drug wars.

Whenever I wear it, I think about Ashley and those women and I think that it says heal, but it really reminds me: 'be grateful', because compared to those women, I'm barely hurt.

Anyway, those are just some of my pills. Aren't you glad that I'm not going to tell you what they're for?

The Good Doctor-Part 3

The other thing you really really want to know is whether you’re going to make it or not. This isn't just casual interest, it's the deal. Now nobody on earth expects a doctor to look you over and say-”2.7 years, maybe 2.8”, but you’d think after seeing a zillion or so patients, a doctor would have a pretty good idea.
If that’s true, and in fact watching hundreds of people struggle with this disease and watching some of them win and go off dancing on the beach and others lose and go off by ambulance to the hospice. . . . . If that gives you some idea about a person’s chances, none of these guys are going to tell you what they think. When you ask they say “well, everybody’s different”. You probably knew that and if you pursue and say, what do you think the probabilities are?, they say something really stupid like “you’re a person, not a probability”. Actually, I knew that too.
These brilliant folks, ten to twelve years of training, probably took calculus as undergrads, all of a sudden don’t know what a probability is. They read papers reporting research using these very terms and they come up blank. Try again “what’s a 50% confidence interval for a guy my age with this particular condition?”  They still don’t know what you mean. One doc at another hospital even said to his colleague “I forbid you to answer that question.”
Any doctors out there? You wanna tell us what’s going on here?  Thanks, and there’s an excellent chance, in fact a point nine nine probability that all of us will appreciate it.

Coloring with the Big Box/Fox Chase

along the infusion bays
numbered Rusty Raspberry chairs, unnumbered bravelette smiles
sunken chests, ruined taste buds, traitor noses
Skanky Lime gowns



the rainbow is in the sudden,
end-of-life resolve that what matters now
is not what mattered just an Opaque Opinion ago

before we were wrapped in heated blankets
and watched the waters drip in our veins
and marveled at the waters rushing out.
before we forgave ourselves and them
and rushed to color in Goodly Green between the lines.


before the only seasoning we could stand was the Slightly Silver
clove-of-garlic moon above the trees that stand
outside the Pale Male windows of the infusion bays
where we infuse ourselves back into the world
and give Thanks Vermillion for the healing.

Bad Day/No Comment

Radiation Day #14 is a Tuesday and it’s the worst day I’ve had so far. I have no energy or appetite. My sense of humor lost its sense of direction and couldn’t find its way home, my zest for life got sprinkled on top of risotto and served at someone else’s table.
I made some rice pudding to try to fatten myself up, it was disgusting: sort of like wood chips, but not as tasty. I haven’t heard from my kid or from much of my digestive tract-two contacts that I’ve come to depend on for a sense of well-being.
This is not to say that everything is going badly. Oh no. J still shows every sign of loving me and my friends check in regularly. (‘Visualize naked women fishing.’ my friend Peter writes. Fly or spinning? I wonder.) My dog is dogness herself and I swear she’s working on a cure in her spare time. In fact, if I were to balance it all out, I’m sure it would all balance out. The problem is that the balance is broken: none of the good things matter much today. I have my depression armor on and it’s proving undisprovable.

Not only that, but I somehow messed up the appointment with the shrink at Fox Chase and so the chemical cavalry is probably not going to be on the way anytime soon. And please, if you have  some cheerful anodyne for me right now, check to see if I can smoke it or swallow it before you send it along.
•
I’ve been following the story of the Chilean miners who were trapped in the San Jose Mine below the Atacama desert, although ‘following’ is probably the wrong word for the spooky identification I feel. It’s not just a matter of feeling like I’m part of the group to be rescued (That would be too simple for my readers-cancer patient=trapped miner. You guys deserve better than that.) No, I’ve identified with the miners and their families and the little tent town that’s grown up on the surface. I’m standing bravely with the whole country and especially Mining Minister Laurence Golborne. It makes me smile to think that I even know the name of the Mining Minister of Chile-I couldn’t tell you the name of his counterpart here in the US.
I guess the strangest thing of all is that I’ve fantasized a whole community of other Chilean Mine Worker Devotees. I imagine a world-wide group of people-tender hearts, blotting paper imaginations, maybe a little claustrophobic, small-family people who want lots of kin.
So later tonight, when they winch Florencio Avalos to the surface, I’ll be watching on the hospital tv set and I suspect I’ll cry. And to all of you who will be crying with me, I just want to say “It’s been great, we’re free. I’ll miss you, Goodbye.”

Questions from The Mask

I’m almost sorry to come back to the business about the mask and being bolted to the table and all that, but it’s almost impossible to avoid the subject.
For one thing, if you sleep ten hours, wake up, go get bolted down, then come home and go to sleep for another three, bolting starts to look like the high point of your day. Or at least the pimple on an otherwise flat-assed dermis of a day.
It’s also true that coping with the trapped feeling of the mesh mask involves something like meditation. You know, deep relaxation, concentrate on the breath, don’t anticipate, don’t remember. Be here. Now, dammit.
And whether you like it or not, that’s a state that lets the darndest things pop into your head. Maybe it’s creativity or maybe it’s just a side effect of the constipation that comes from all those drugs. In either case, there are these things that pop into your head-the things that the experienced meditator escorts immediately out of the room and that the trapped xray patient hangs on to.
Here’s one that came up for me: I’m signed up for 35 of these sessions-5 times a week for 7 weeks. But if I need 35 zaps (why not 32 or 38? did somebody do the numbers?) wouldn’t it be more humane to just go seven days a week and get this business over in five weeks?
Why draw it out? Is it to give the tumor a sporting chance? Does the patient need a break? Was there a test of continuous vs. interrupted radiation? Did the interrupted approach do a better job?

It turns out that the reason you don’t get life saving radiation on Saturday and Sunday is that the hospital isn’t open. You don’t get it ‘cause they don’t give it. I hope it’s not just a question of doctors not wanting to work on the weekends. Does anybody know?
These days, one of the obstacles to America’s having a sane health care system is that our costs are the highest in the world. And when you’re bolted down for a while, you start to wonder if this gigantic, hideously expensive machine ought to be sitting idle for two days out of seven. And if ‘we don’t want to stay open on the weekend’ is a good enough reason.

The Big Picture in Two Parts

Part One
Here's what I'm looking at: There's 35 days of radiation therapy and three bouts of chemotherapy. Its friends would call the latter 'chemo': but now that you mention it, chemo doesn't have any friends outside the companies that sell the stuff. 
Today was dose #9. The radiation sessions happen Monday thru Friday-five days a week for seven weeks. A session consists of them doing a CAT scan to make sure they are picking up where they left off, then there's about five minutes of x-ray bombardment. The whole thing takes about 20 minutes and -in my case-happens every day exactly at noon. I've already had one chemo and told you about it, the second one is next week. The whole thing ends November 10th.
When it's all over they wait four weeks and do a CAT scan. December 8th
The scan is our report card, theirs and mine. There are three possible outcomes.
They may have killed the thing. If they have, we have a 'Borrowed Time Starts Today' party. And we start looking at sailboat ads.
Or maybe they got most of it. Then they have to make a new treatment plan and this blog gets an extension. Frankly, I could do without this one.
The third possibility is that the treatment flat-out didn't work. That's the one where we have a farewell tour, sort of like the Doobie Brothers in '83 or The Band's Last Waltz in '76. That was the concert where they got a big horn section behind them. Did you ever hear a more moving rendition of Stage Fright? You can almost feel the kernel of doubt and fear behind the public persona of the performer and you have to be reminded that we're all performers.
And then there's the anthemic quality of The Night They Drove Ol' Dixie Down, evoking....ah, but I digress. The third possibility is that I'm going to die soon and miss the chance to play out a weird old age. The thought still makes me more sad than scared, but mostly it makes me want: accomplishment, experience, states of being, the sheer freakiness of being outdoors.

Right now, I'm working with the first outcome, the one we'll call 35 and Out.



Part Two

Tomorrow I’m going to make Creme Brulee. There’s not much to making it: I’ll take a cup of half and half and beat an egg into it. I’ll add some sugar-maybe a tablespoon which is a whole lot less than most folks like, but this is my food. Then I’ll add some Madagascar Vanilla and a few drops of dark rum.
The mix will be poured in two white ramekins, the ramekins go into a loaf pan and I’ll pour hot water around them ‘til it’s halfway up the side. The kitchen will have a high sharp smell-like edible air- as I put the whole bit into a 300F oven. In about an hour, I’ll take them out and let them cool, maybe even chill them a little to tighten them up. (it works on me, oughta work on pudding too) Then I’ll sprinkle the tops with a coating of raw sugar, haul the propane torch up from the basement and work the flame over the sugartop. There’s an craft to it, of course. If I’m careful, the sugar will melt but not scorch and the room will smell of caramel. 

Say the name car-a-mel. Don’t cheat on a single syllable: caramel. Sugar all grown up and ready to go out dancing.
I’ll put a piece of plastic wrap over one of the dishes and put it in the reach-in. It will be a gift. Then I’ll sit the other one on the counter where the skylight is rich and cool and shadow-less. I’ll take a teaspoon and tap the back of it on. . . what? Yes, the caramel and it will crack. I’ll make a dozen pieces or so. I’ll look at them, study them like they were a map of a place I plan to visit next week.  I’ll smile at the vanilla-rum scent that comes through the borderlines. Then I’ll dip the spoon in one of the cracks and lever up-a township? a county? some little division of Carameland. There will be exactly the right amount of eggy dense custard clinging to the crust. I’ll look for a little translucency on the edges-do you remember that tv show-I Love Translucency?
It will take a long time for each bit to dissolve and coat my mouth. Texture, flavor, evocation, drama. The custard will play the part of Love, the caramel will appear in the role of Wit. I will rumble with the beauty of it, I will think of absent friends-and that my dears, is the only possibility.

Reluctantly Speaking-Radiation Day #7

My friend Bonnie* is a farmer. She  makes her way through the world with an appealing, jovial, sarcastic, cocktail lounge tone of voice. It’s not my native language, but I speak it, and she’s my friend so when she’s around, I speak it with her. She visited me one day last week in the company of some other folks and we poked and scoffed at each other for a bit. Then when we were alone, looking around to make sure nobody heard her, she said “But how are you? Really.”
“Today’s a pretty good day.” I tell her, “although my voice is sounding weird. Does it sound strange to you?”
“Well, you do sound different. Not so hyper-'though you're not really hyper exactly.." She took a few seconds pause. ". .but, um not as aggressive as usual, but then you’re not really aggressive either. But it’s different.” For a second there, the look on her face could have been taken for affection.



It took me a while but I think I understand what Bonnie was saying. 
It hurts a little when I talk and the longer I talk the more it hurts. So I’m a little less generous with the words. I try to let them out in a low-pressure, easy-on-the-throat, breathy rhythm. If someone talks over me, I just shut up. I never repeat myself anymore. If you ask me what I just said, I wait quietly until your brain catches up to your ears-invariably, it does.
I can’t imagine what this new voice must sound like to other people-it’s certainly not the same changed voice that I’m hearing. I hope it doesn’t sound calculated and I really pray that it doesn’t sound wise.
What I take it to be is that now that the price of words has gone up, I have to be more frugal. I’d hate to be stingy, but I never heard of anybody’s expression that was damaged by a little spareness, by a dash of economy, or a bit of restraint. Brevity’s not in the nature of my Irish side-there are no haiku in Gaelic, don't ya know-but a man grows up even as a man grows old.
I remember being advised that an artist should change his name every ten years to keep from being trapped in the cage of his latest work. Maybe changing your voice once every major disease or so would have the same effect. I don’t know what to make of it. Stay tuned.

*In order to preserve Bonnie’s reputation as a tough guy, I’ve changed her name in this piece.