Rannie Yoo 1976 – 2009

Rannie Yoo died at home late on Sunday afternoon in San Francisco. On the message boards she referred to herself as CatsM. It stood for “cats meow.” She was 33 years old.

I first came across her posts on an online forum dedicated to patients with tumors of the parotid gland. Like many I was drawn to the love and joy and humor that was so present in her voice. I would later learn that the tone and words and wisdom that I found so compelling were as well present in her person.

She and I shared the same surgeon. I had been diagnosed with a recurrent pleomorphic adenoma at about the same time that the doctors had discovered her stage IV malignancy.

When she received the diagnosis from our surgeon, she asked him what the worst outcome was. He was a little bewildered. Well you could die, he said.

She received those words and she did more than soldier on. She proceeded to live her life with a beguiling grace. She wasn’t scared of surgery, she said. It was her job to just go to sleep and wake up. It was the surgeon’s job to get rid of this thing. And so she went even as her cancer threw everything it could at her.

After my surgery I looked her up when I returned to San Francisco for my radiation treatment. We met a few times. Although by that time her cancer had spread, she was publicly upbeat and happy. Like others in her predicament, her illness had made her feel strangely alive, perhaps more so than she had ever been. She once said that she was grateful for what was happening to her, that it was helping her become who she was. She could see clearly how much her fiancée David loved her, and how devoted he was. She was grateful to him and to her sister and to her vast network of friends and coworkers. And she was deeply sympathetic to others facing similar or even lesser conditions.

At one point I had confessed to her that I was primarily a lurker on the parotid forum – that although I found the information useful, I wasn’t necessarily seeking a community of illness. There’s a lot of love on that site, she gently cautioned. They are all really good people.

She relied on them, on us, greatly for both solace and as comrades in arms. I believe we also helped her to feel of service and to provide an arena for her to express the wonderful person that she was and and will always continue to be.

Rannie and David married five nights before she died. It was a forestalled wish that she had long been harboring. I would like to think that it was one of many wishes granted her.

With her hair gone she once described herself as looking like a shaolin monk. I will always remember her as beautiful.

It is.

So it is. ¬†I feel as if I’ve descended from second base camp to first base camp. ¬†I’m off the summit, but I still have a ways to go yet before I’m home.

My treatment finished Monday and ended in hugs with my practitioners. ¬†I celebrated at Swan’s sitting at the tile counter with a bowl of clam chowder and a pint of anchor at 9:30 in the morning. ¬†I came home and slept. ¬†I went to Spirit Rock in the evening for a meditation session and a talk.

Yesterday I did laundry and cleared my desktop and began to pack. ¬†It’s taking longer than expected. ¬†My face has a second round of red burns, my mucus still sticky and gaggy. ¬†Taste buds deadened. ¬†But overall I’ve done really really well. ¬†Remarkably well. ¬†I’m very happy.

This year began with a CT scan and a fine needle aspiration and a diagnosis.  And some of you grimaced and counseled me to belly up. And then I was strapped in.  And eight months later the ride (or at least this part of it) is almost over.  In that time: a half dozen consults,  a marathon along ocean cliffs, a run through a blizzard, trips to Phoenix, to San Francisco, a train journey to San Diego and back, travel to Salida and Beaver Creek, Colorado, and San Francisco, and Philly and Lancaster.  Adopted an Amish kitten.  Weddings and travel to New York and Vermont and Hopi and again to San Francisco.  Planting, and digging grubs and ants, and tending hundreds of plants.  Several deaths.  Massive teeth cleaning for the first time in 13 years Рthank you Hopi Health Care.  A growing roster of brand new friends and renewed friends and a deepening group of very old friends.  A deft, protracted incision.  Healing.  And six weeks of low dose fire.  A blog.  Finishing the Border Trilogy and beginning Everything is Illuminated.  I bought a phone.  Ate a lot.  Delicious things that eventually were transformed into the absolutely undelicous.

Feeling so happy to go back to where we presently live.  I want the sky so bad.  I want our friends.  I want silence.  I want the simple.  I realize more than ever what we risk losing of we were to ever leave.  Losing something that most people never even experience.  And for what?  Most likely too much of too much.

I no longer give a darn about those hundreds of things left undone.  Instead I sleep.  I love my wife.  I love my daughter.

In cleaning up I stumbled across the note I scribbled to Mazie a few minutes before I went into surgery on June 17th.  It was scrawled on the back of my authorization form.

Dear Mazie,

  • Remember always to laugh and to make others laugh.
  • Do your best. ¬†If you refinish a bathtub or tile a wall, do it so it will last. ¬†If you play Pachabel or Vivaldi, play it beautifully. ¬†Make it sing. ¬†Do your best.
  • If you drink wine or eat cheese, eat the best. ¬†Learn to discern the best.
  • The best pot of beans are the most simple: ¬†beans, good water, good salt, one onion, lard. ¬†Remember to keep ti simple.
  • Finish what you start.
  • Learn to tell a story. ¬†Then tell them. ¬†They make the world a better place.
  • Appreciate everything: the taxi cab, the driver, the I.V., the table cloth white and crisp, now stained with a single drop of berry juice, the smile, the names, each person’s unique story. ¬†They all are gold.
  • Make good friends. ¬†And do right by them.
  • Sing. ¬†Sing. ¬†Sing.
  • Every street corner, every barista, every vista, every shift in temperature is an adventure.
  • Breathe. ¬†Remember to breathe.
  • At Hopi farming is a religion. ¬†You can spend a lifetime coming to understand why. ¬†Try.
  • We choose life because it is hard.
  • And the difficulties are what make it worth living.
  • Most things that are easy are not worth having.
  • Choose the uncommon path.
  • And if you ever have to choose between picnicking at John Boy’s house on Walton’s Mountain or eating beneath the billboard advertising the place, by all means choose the mountain.

I love you forever and ever my blood.

-Baba

I am a dog

Or a pregnant woman. ¬†As taste has dissipated, my olfactory sense has eagerly leapt to fill in. ¬†But it’s doing overkill, I think. ¬†Odors are now pronounced enough that walking through this city is akin to strolling through a sewer. ¬†Fried food, grease, the smell of flesh – beef, chicken, seafood – are particularly strong and distasteful.

But also richer. ¬†Standing in line outside Mama’s on Washington Square, the odors emanating from the basement entry were deep, round and hollow. ¬† Union Street announced itself shrill and grating. ¬† ¬†The floor of Cafe Roma reeks of ammonia and cleaning fluid. ¬†The bathroom jumps with the slightly acrid smell of that tart powdery soap once used in elementary school lavatories.

Can we ever smell anything new?  Or at some point do we simply paw through the catalogue of memories and reconfigure them to describe the color of our current sensations?

Last night I attended a sound sculpture at the Audium on Bush Street.  For 15 bucks I sat in a dark circular room listening to sounds take shape in four dimensions.  The sounds in fact shaped the dimensions.  From one corner drifted the shimmering laughter of little boys splashing in rain puddles while around them arose looming, pouncing spectral sounds, immaterial shapes that hovered unbeknownst about them.

I felt scared for the little boys because of this spectral energy that existed beyond their consciousness, because of me even, who was aware of the boys, but again resided in a darkened room, in a dimension beyond their world.

Later, what sounded like a mass of ghost children appeared to count off and then march slowly across the room in concert with a chorus of unspecified orchestral sounds. They marched right through our bodies.

In what way do the sound of these children exist? ¬†They exist differently in each one of us. ¬†Hearing (or any sense, really), more than anything is about memory. ¬† When I heard those children playing in the darkened room, what I really heard (which basically is what I felt) was the sound of the first instantiation of children playing – most likely in the late 1960’s on a playground at Grant Elementary School in San Diego. ¬†All other instances of children playing have summoned and been modified by the feeling of that first memory.

Do any sounds exist that we have not yet already heard? ¬†When we listen, we compose (and recompose) the sounds each time from a library of constituent sounds inside our heads. ¬†We can’t hear a timpani drum without hearing the catalogued idea of timpani drum inside us. ¬†Most of the orchestral and synthesized and organic sounds in the chamber were already familiar to me. ¬†They existed within my library.

What new sounds then have been added recently?  Mainly ones outside my culture.  I heard Tibetan throat singing for the first time perhaps 20 years ago.  That was new.  More recently, the sound of the turtle shell rattles fastened to the calves of katsinam.  The deep muffled dirge of katsinam songs. These are new.  Fresh, reconfigured scent, if you will that exist in relation to one highly specific place and experience.  I once rattled a handful of lima bean pods in front of a class of Hopi children.  I asked them to shut their eyes.  What is it, I asked them.

It’s the kachinas, they answered. ¬†It’s so clear and self-evident once you have heard it.

After my hearing isolation experience last night, I dipped into the Mandarin restaurant next door,  ordered a bowl of won ton soup and gagged when it arrived.  I promptly asked the waitress to pack it up for me  to take home Рa gift to my roommate.  I walked up the street to Whole Foods and was overpowered by the scent of rotting vegetal flesh.  I settled for a small container of Cowgirl clabbered cheese, two lemon meringue tartlets and a croissant.

Three more days and the treatments are over.

Brown Cake

I crossed Funston St. on the bus home today. I once stayed in a house near Funston and Haight. It was Christmas time, 1983 and the city was still irrepressably fresh and alive to me as if every possibility lay resident in this place waiting to be awakened. I was with my girlfriend Alison and we were with a girl Darcy and her boyfriend, Gierdon. I remember the cotton linens and the intense cold yellow light and the smell of incense and colorful fabrics, the warm morning caramel aroma of coffee, and hundreds of strange and exotic objects from faraway places.

I think of Gierdon pacing the rooms of the apartment madly, ravenously and then calling Darcy a fucking bitch, a fucking whore, again and again until she broke down crying. I think of his gaunt frame and hollowed out burning eyes and handsome unshaven face. He held up semi-precious stones between his fingers and twirled them in the light. Look at them, he said. Look at how beautiful they are. And I asked where they came from. Afghanistan, he said. I brought them with me from Afghanistan. I import gems from Afghanistan, he said.

On New Years Day we awoke to streets littered white with calendar pages and Gierdon he had been at the New Years show and at midnight Bill Graham’s gnarled face had appeared on a massive video screen above the stage intoning: THIS IS BIG BROTHER. AND YOU KNOW WHAT? I’M FUCKING TIRED OF WATCHING YOU GUYS. YOU’RE ON YOUR OWN, he said. And then father time descended in a spinning cloud of fireworks and the band broke into Big Boss Man and Gierdon was backstage, he said. How were you back there, I asked. I have friends, he muttered.

I think of the fight I had with my girlfriend and of how a friend’s mom drove me back to San Diego and of how this woman on several occasions saved my life. I think of how she saved my life and of how years later she was murdered by her husband.

I think of 1980 on the grass in San Diego stadium up front waiting for the Stones to come on pressed in a pack of people. I had lost my shoes and boots crushed my feet and I burned my soles on glowing cigarettes. It was so hot, burning crushing hot and Bill Graham strolled onto the stage in a cut off t shirt and sprayed us again and again. He sat on his haunches and sprayed us.

I think of the Simon and Garfunkel reunion concert in Oakland Coliseum and again being there with my friend’s mom and of how she wanted to talk to them and how the stadium had cleared out and a lone figure made his way down the rows of thousands of chairs cramming the field and how I raced down the steps and hopped the railing onto the field and how I moved down the rows in parallel with Bill Graham slicing the plastic bracelets linking the chairs and I asked him why are you down here doing this? I pay twenty fucking thousand dollars an hour for this place, he said. I want to get out of here as fast as I fucking can, he said. I cut the bracelets and we talked. I loved this man I admired this man and I asked this man where Paul Simon was staying and this man stood up and stared with such fury. Do you think I’m stupid? he shouted. DO YOU THINK I’M FUCKING STUPID? Get this kid out of here! he bellowed. Get this FUCKING KID out of here!

I think of when the Dead played the Warfield in spring 1983 and I had driven up from Irvine by myself and it was cold that night and I had no ticket and I pleaded at the door explaining that I’d been inside and that I’d gotten sick and my friend had my ticket stub and if they would just let me in I’d take them to my seat to my friend to my ticket and the bouncer escorted me in and I led him to the balcony to a stranger whom I implored to hand me a stub but he couldn’t understand me and the yellow jacketed bouncer dragged me through the lobby right past Bill Graham who glared and hissed to me, to the bouncer, to no one, get that FUCKING kid out of here.

I think of Walodja Grajonca 13 years old before he had even reinvented himself as Bill Graham and his sister younger yet and their parents burned in the ovens of Auschwitz and how they had walked across France hiding stealing until they eventually came to Spain and his sister died there and he came alone on a ship to America. And of how he came to study business in a Bronx community college.

I think of his offices decades later torched and burned to the ground by people who hated him. I think of those final moments when his own body was consumed by flames after his chopper hit powerlines as he surveyed the Oakland fires.

And I think of the kid in the Russian class I was failing. Three days a week I was bullied by the authoritarian Gospodin Hramov a bitter White Russian who hated shitheads like me and this kid a hippie kid who spoke better Russian than me and the kid told me how that weekend some cops had found Jerry parked in his limo in Golden Gate Park and he was shooting up, he was there with all his works and when the cops realized who he was they just let him go, the kid said. Isn’t that cool man, the kid said. They just let him go. Yeah, that’s cool, I said. But even as I said it I began to think it wasn’t.

And I think of that morning that Jerry died. He was in rehab in a private clinic and he was trying to make a go of it but it was too late by then and his heart could take it no more. That morning the news had run across the ticker of the New York Stock Exchange and I had been up all night on call at the San Francisco VA with Anna not yet my wife and Danny Feikin, the only one among us who was a doctor. But there we were all three of us in blue scrubs rounding on patients pretending that we knew what we were doing. Jerry had died and I made my way across the city to the spontaneous gathering in the park and his kids and recent wife stood on a stage and his daughter said to the mass of tweaked out kids: get a life, she said. And thank you. You put me and my siblings through college.

I think of those fields and fields of crimson poppies still growing in Afghanistan. And I think of now, of this once unimagined year, of our boys, our soldiers, of the pinch and the prick, their veins lighting up with gems of china cat, with cakes of Jesus’ Son.

I think of how horrible this world is, of how truly crippled we can be, and of how strange that we can find beauty in it yet. I think of how in this wide universe none of these stories have existed except in my own head, except they now exist perhaps in yours. And I wonder what’s left when even the ashes have burned. And as I find myself being burned each day in this she-goat chimera of a city, I wonder when ones stripes have finally been earned. Does it come with being incinerated?

Scary Monsters 1980

Scary-Monsters2

I only need to shave half of my face now. Pretty much. The other half has no stubble. In some places I’m almost completely clean shaven each morning. It makes a neat line down the middle of my face like in an ad showing the efficiency of the latest razor.

Boy, is it the latest razor. Makes me think of when David Bowie had some sort of electrolysis thing done to his face so that his facial hair wouldn’t grow and he’d never have to shave again.

Which reminds me of a very important story.

In 1980 Paul Allen, one of our neighborhood outcasts, was forced to attend a school assembly at Roosevelt Junior High. He was in 9th grade. The Reagan thing had just started and the school program had something to do with morals and values. Paul with his long blond hair and goofy clothes was thinking privately to himself that it was one of the weirdest things he’d ever been to. MIdway through the program, the speaker flashed up a slide image of the latest David Bowie album cover – “Scary Monsters”, I think it was.

Whoa, Paul thought. Now this is getting interesting. Bowie was wearing some kind of cool makeup that made him look his usual androgynous self. Nice, Paul thought.

Just LOOK at HIM!!!, the speaker suddenly barked out to the packed auditorium. You can’t even tell if he is a MAN or a WOMAN!!!

EEEEEWWWWWWWWWW, the entire audience of eighth and ninth graders jeered.

Ashes

This is the time of tiredness, I guess.  Yesterday I came home so beat that I scarcely had energy to lie down.  I forced food down my throat.  Cleaned my mouth.  Applied aloe and antibiotics to my neck.

I press a wet wash cloth to my neck and the skin crumbles off like wet pieces of chocolate. ¬†It is burned black. ¬†My body feels buffered from the world as if it is wrapped in cotton. ¬†Sensations, the larger sympathetic sensations that engage us with the world, feel muted. ¬†Sense of smell, however, is more pronounced. ¬†People’s bodies smell. ¬†Smells of oil, simmering tomato sauce, chicken or vegetable broth all wafting from restaurants strike ¬†fiercely. ¬†As does the sharp pungent odor of tobacco. ¬†Or the sewer, or the scent of ocean on the fog. ¬†I can detect the scent of flowers from yards away.

It takes time to accomplish much of anything.  Today I pondered ordering new software on Amazon for a good half hour before I summoned the energy to do it.  Eating takes time.  Hygiene takes time.  And suddenly I feel exhausted and I need to just lie down.

And yet.

On Wednesday I attended a forum on health care. ¬†Nancy Pelosi spoke as did the CEO’s of UCSF and California Pacific Medical Center. ¬†I read about medical drains. ¬†I read about radiation treatment.

I ate.

I paid 2 dollars to take the bus to treatment and used my transfer to take the bus to China Basin.  I posted an entry en route and stopped for a bagel layered thick with cream cheese and walked to the China Basin Med Center and took the UCSF shuttle back to Mt. Zion and read there and took the bus to the Park and the bus from there back home.  I was destroyed by the end of it.

No more days, like that I think.

Today I read plot synopsis of 25 or 30 Lost episodes and I lost so much interest in the characters that I switched to reading 2 sentence precis episode descriptions and then I got so bored that I gave up entirely.  So much for TV.

I think I might read a book.

Or I might sleep.  Call it sleep.

Burn

It’s a dry leaf that shivers on the branch. What matter if the wind casts it down with a ruthless hand?

-David Eugene Edwards. “Blue Pail Fever”

I’ve begun to think of the basement of Zion as a bad and somewhat expensive tanning salon. I’m sporting a light mocha colored burn on the right side of my face. It’s peeling and doesn’t like it if I apply pressure. It’ll fix itself eventually so all’s cool.

The usual drill this morning: step in. Empty pockets. Remove shoes. Position my body on table. Pull gown down from shoulders. Soft blanky placed over body. Handed bicycle horn to toot if I feel scared or uncomfortable. Today I asked for a yo-yo and they said no. Insert wad of putty in mouth. Batten down mask. Wait for entire process to be over.

Yesterday I had my weekly meeting with my radiation oncologist, Dr. Quivey. Although Princess Sparkle Pony liked to think of her as the “ancient grand dame of the mystic radiologist”, I see her more as the Bitch Goddess of Radiation. Except that she’s not a bitch. But she brings to her practice a warm severity and intelligence that someone curled up in the fetal position might find comforting. She told me that I would be getting an MRI and then meeting with her and Dr. Eisele every six months for the rest of their very long and happy lives.

I promise to you all that I will take care of the flowers at their funerals.

Food on a Sunny Day

The day broke with sunlight this morning. ¬†And warmth even. ¬†Eating on the porch looking out over the Headlands, I actually felt pretty good. ¬†If I chew on the left side of my mouth, Cowgirl cottage cheese tasted like cottage cheese. ¬†A bit of tamale tasted tamale-like. ¬†I can drink Pellegrino water (I wonder if the carbonation pushes it toward alkaline and so boosts the pH in my mouth…).

I ate piki. ¬†I could taste that deep old corn taste. ¬†The piki came from ¬†Shungopovi. ¬†I thought of a woman making the thin batter and of her prayers. ¬†I thought of the man who grew the corn and the other man who burnt the salt bush to make the ash. ¬†I thought of the saltbush and the corn and the springs. ¬†I thought of the rock and the fire beneath the rock and the wood that fed the fire and the woman’s hand moving deftly across it. ¬†I thought of layer after layer after layer of infinitely thin batter being spread, lifted and folded. ¬†We call this food.

Afterwards I brushed and cleansed my mouth and still no mucusitis. ¬†I’m tired, but I’m still without sores or sore throat and I don’t know whom or what to thank for that. ¬†Perhaps the salt and bicarbonate of soda. ¬†Or perhaps the piki. ¬†Or perhaps all of you.

I think of all those things, sentient and otherwise, that create food, that create a community of health.

piki

My Medical Bill

My bills

A couple days ago I spread out all my medical bills to date to make better sense of them. For each procedure it seems I receive six or so different pieces of paper (with accompanying return envelopes): the initial bill, a notification from Blue Cross Arizona that the claim will be processed by Blue Shield California, a statement of benefits from Blue Shield California, an adjusted bill from the provider, and a secondary bill because by now the whole thing is 60-days past due.

It amounts to a whole lot of paper. Multiply by the 50 or so million people receiving medical care in this country and, well, we can leave it to Harper’s Index to figure it out. ¬†After laying it all down on the floor and clumping by month, I went through and organized by procedure and date (something like 35 procedures, 35 dates). Now it’s somewhat graspable. Some of the bills actually itemize individual widgets, sub-contractors, and sub-procedures: it’s a bit like going out for a plate of spaghetti and at the end of the meal receiving an itemized tab with seperate charges for the tomatoes, parmesan, semolina, salt and pepper, soux chef, head chef, dishwasher, and maitre de. Yes, perhaps someone else needs that for their internal accounting, but do I as a consumer? ¬†It gives the illusion of information, but is largely unactionable. Am I in a position to dispute the wage or hours worked by the dishwasher? ¬†Am I truly able to assess the value of a foley catheter? ¬†In the end it all amounts to the same thing: I pay it.

So what, in this case, do we pay? I received my surgery bill last month. My nine hour nap cost $85,868.32. I think I’m pretty much good for the 32 cents part.

That’s just the surgery. I also go in for radiation every morning for a 15 minute treatment. Each 15 minute fraction costs $7000.00. I’m going to have 30 of them. ¬†You could say my rent runs about $28,000 an hour. In the end after you add in ancillary costs, the whole radiation circus is going to cost about $300,000 give or take. ¬†When all is said and done, for everything, I’m technically probably going to be down for something close to half a mil. Interestingly, most of the wonderful providers involved with my care most likely have no idea what they charge. ¬†I’ve asked some, and hey, they just deliver care, what someone pays for their services is a mystery to them. ¬†At least in the restaurant, the dishwasher can step out into the dining area on break and take a look at the prices on the menu.

Now it remains to be seen how much of this I owe, and don’t get me wrong, by all means I think it’s worth it. What’s the value in a human life, and my life in particular? ¬†And in a world where Wall Street bankers get $20 million for doing their jobs badly, my surgeon and rad onc are probably underpaid. My surgeon took my life in his hands and spent 9 hours doing incredibly painstaking work (with pre and post-op rounds it was probably a 13 hour day for him) in which he managed to remove a bunch of tumors and save my facial nerve to boot. ¬†There are only a handful of human beings on the planet who could have adequately done what he did that day. ¬†And as for my radiation oncologist, she and her team and their computers are responsible for pointing a big ol’ x-ray gun at my skull every morning and they better have very, very, very steady hands. ¬† If they know what they’re doing, they’re worth it.

But it begs the question, what happens if you don’t have health insurance? One unexpected medical issue (and isn’t that the nature of medical issues, that they’re unexpected?) would quickly and effectively ruin most people. I heard a story when I was in Lancaster, PA this summer from a family practice doc who has some Amish and Mennonite as patients. ¬†As a rule, Plain Folk pay cash for medical services – they exist outside any governmental or institutional systems – no insurance, no subsidies, no government aid, no nothing – and as a rule, private physicians tend to love ’em. ¬†In this one instance, an Amish woman had contracted cancer. ¬†She and her husband met with the physician to decide on a course of care. ¬†The recommended action was a run of chemotherapy or radiation, but the chances of it doing any good were pretty uncertain. ¬†Treatment would cost somewhere between 50 to 70,000 dollars. ¬†Husband leaned back in his chair and explained that that was the cost of the new tractor that they had been saving for. ¬†The wife and husband discussed that matter, and given the odds of a cure, the age of their children, and the certainty of heaven, they decided that the money would probably be better spent on the tractor.

But that’s not us. ¬†Or at least most of us. ¬†We¬†want our MTV, and unfortunately few of us are in a position to pay for it. And if you don’t have insurance you are in big, big, big trouble.¬†How in the 21st century, in reputedly the richest country in the world, is this possible?

Now, what about that insurance? ¬†At the beginning of the year I needed to have a standard x-ray done. ¬†I dropped into Northern Arizona Radiology in Flagstaff, was all set to do the procedure, they asked for my insurance, I slipped them my Government Employee Health Association (GEHA) insurance card, they looked at it, and politely slipped it back. ¬†No go, they said. ¬†We’re not a preferred provider.

And where was the nearest provider? ¬†Prescott, Arizona – 3 1/2 hours from my house. ¬†But that’s not all. ¬†I needed a pre-approval. ¬†If they were to grant it at all, it would take at least a week. ¬†And sometimes they didn’t even grant it.

What if I had Blue Cross?, I asked.

You’d be done by now, the receptionist answered.

I left the desk, promptly called my wife and we switched our insurance plan.  We had that luxury.

For anybody who is still afraid that health reform is going to jeopardize your freedom of choice, let me be clear on this: GIVE IT UP. ¬† You don’t have freedom of choice. ¬†Unless you pay out of pocket, you are bounded by the providers in your insurance network. ¬†You do not have a choice. ¬†In my case, it might have made more sense to have my entire treatment done at the Mayo Clinic in Phoenix. ¬†They’re closer to home, and they’re one of the leading tumor/cancer facilities in the country. ¬†But guess what? ¬†They’re not a preferred provider under my plan. ¬†Instead I’m now (gratefully) receiving my care in California. ¬†Fortunately they were in network. ¬†But what if they weren’t?

But that’s not all. ¬†I’m now set to go through my medical bills, figure out my copays and whatever and cut a bunch of checks. Let’s assume I can afford it. ¬†But Blue Cross/Blue Shield – and I’m speaking to you now – you have not yet pushed back. ¬†And apparently you’re capable of it. ¬†Within your cubicles you have a legion of actuaries and hospitalists who are trying to drive down costs by determining what expenses are allowable and not allowable, what fall under my deductible and what do not, and if you wanted, with a single keystroke you could point to some fine-print of your making and put the kibosh on the whole thing. ¬†We no payee. Get attorney. ¬†End of story.

My friend CatsM? ¬†She started her second round of chemo yesterday. ¬†Her choice? ¬†Get this. You have no more options. ¬†Her insurance company’s initial response? ¬†We won’t cover it. (Fortunately her doctor went to bat for her on this one).

I love you guys. But why should any of us, including you, have to put up with that?

Lastly (and forgive me if this is sounding interminable), but what of the future? ¬†My wife is a federal employee working in a remote location (we drive 120 miles to buy our milk). ¬†At some point we will have to move. ¬†When we move, we will most likely have to change insurance companies. I have a condition that by definition is recurrent. ¬†Odds are that it may be coming back. ¬†If it comes back, it will most likely be classified as a pre-existing condition. ¬†So in theory, here’s our choice: a) ¬†for the next 20 years continue to drive 120 miles to buy our milk, or b) sock away half a million.

And then there’s a third choice. ¬†c) the choice of our Amish farmer.

For those who don’t know, my wife is a doctor. ¬†She is a highly trained and highly capable physician. ¬†She works for the Indian Health Service that, due to the Federal trust obligation, provides more or less free medical care to Native Americans (if any fringe elements want to quibble on this one – give me a call. ¬†Please. ¬†I’d love to have a sitdown). ¬†People love to bitch about IHS. ¬†But at least from a doctor’s perspective the system more or less works. ¬†My wife can prescribe the needed care based on the medical need and not be second-guessed by second-party payers. ¬†She can do her job as a doctor. ¬†And the patients pretty much don’t need to worry about the bill. True, they have a hard time attracting doctors (who wants to drive 120 miles to buy groceries?), but it basically works.

But as for our health care? ¬†We’re not covered by IHS and so are part of the system that the rest of the country has to contend with. ¬†And even for us –¬†get this – even for us, the system is potentially broken. My wife is a damn doctor and even we don’t get a Get Out of Jail For Free card. ¬†This summer I talked with family practice docs in Pennsylvania who were up and ready to just quit. ¬†They hated their jobs. ¬†What did they hate? ¬†The insurance companies. ¬†They felt that they couldn’t deliver the needed care because they had to constantly fight with 2nd-party billing. ¬†The CEO of one of the state Blue Shield franchises has publicly stated on record that the system is broken. ¬†A staff member in one of the UCSF billing offices confided to me the same – the system is broken. ¬†Every day he has to fight on behalf of patients to make sure that their care is covered. ¬†Another friend who makes a living negotiating drug prices with pharmaceuticals contends the same. (Big Pharma’s lobbying tab, by the way, is set to top¬†$150 million dollars this year).¬†Truthfully, most of the people I know, myself included, who work in and around the health care industry feel the system is broken.

For those who are against health care reform:  We are the system.  And the system is saying: we are broken.  The system is broken.

Gratitude

Last night I was at a celebration party / gathering of force for CatsM.  It was, well, San Franciscan Рwith lots of media and video gaming industry, and inventor, and softwary kinds of folks.  All really nice.  I learned a lot.

In the midst I got a call from Paha from back home. ¬†He was just checking in. ¬†He wanted to make sure I was okay, he said. ¬†And then he added – they were all praying for me, he said. I had tucked myself in a back alley and was sitting beside a dumpster and I started crying because I don’t think anyone really knows how much that means to me.

If CatsM has a gathering of force, then I have a full on army of the most extraordinary sort. ¬†And I felt so lucky, so incredibly lucky for myself and for my wife and for my daughter to be where we have been for the last six years. ¬†And I want everyone – all the people from home who’ve been calling Anna and asking her at work, and sending messages my way, to know how extraordinary they are and what they have given, what in me they have changed. ¬†I will never in my life run the same way again. ¬†I will never drink water or eat food in the same way again. ¬†I will never see a plant, touch a plant, be with a plant, in the same way again. ¬†I will never feel the beat of the sun in the same way again. ¬†I will never understand darkness in the same way again. ¬†I will never know rain in the same way again. ¬†The word Life is a new word for me, and I will never hear it or say it in the same way again.

Finitude

Wait. ¬†I need to be clear. ¬†I DON’T HAVE CANCER.

I have a tumor. ¬†And I’m getting radiation. ¬†And I’m experiencing all the weird side effects of that. ¬†And they’re so weird, that I find them compelling enough. ¬†Though I’m pretty easy.

At my weigh in yesterday I clocked in at 148, down 3 pounds. ¬†To be expected. ¬†Each Tuesday they basically query me on symptoms. ¬†They offer some small remedies, but their main job I think is to simply observe and make sure things don’t get too out of hand.

I mentioned the hair loss. ¬†Apparently the radiation kills hair follicles. ¬†Not all, just 50% of the ones they hit. ¬†And of the ones that die, I think there’s a 50-50 chance they may grow back. ¬†I asked if they could change my treatment plan so that the radiation could spell a word or something on the back of my head.

No, the rad onc said. ¬†Because there’s only a 50-50 chance that we’ll destroy the follicle. ¬†Good answer. ¬†Now I realize, of course, that she probably gets asked this question by a new patient every week. ¬†Dang it.

This life now consists mainly of finite rituals of excoriation. The best antidote to prevent or minimize mucusitis (the dreaded mouth fungus that can render the mouth and throat into a mass of aching sores) is to swish regularly with a concoction of water, salt, and baking soda. The salt kills bacteria. The baking soda restores a bit of the saliva pH (the radiation also destroys the sub-mandibular salivary gland on one side which makes my saliva more acidic – hence brush brush brush – and also affects taste). The baking soda also supposedly helps with the mucous consistency. It’s become uncomfortably thick, lining my throat with a dense layer so that behaves something like a clogged artery. I feel a fairly constant impulse to gag. Mornings and around food are the worst. I was swishing 3 times a day after each brushing. Yesterday my rad onc recommended six times a day. People who swish do a lot better, she said. I decide on a routine of salt and baking soda before each meal, after I brush, and everytime I enter the bathroom or walk by the sink. That should cover it.

I also brush every time I eat. 20 times on each surface with just water. 20 times with toothpaste on each surface. Floss. Swish and gargle with hyper-salinated baking soda water. Rest.

Eating becomes a dogma. I awoke at 3:30 am famished with no desire to place anything in my mouth. This morning, breakfast was grape nuts, half an apple and yogurt. All animal products – fat, milk, yogurt, meats – taste cloying; imagine lathering the inside of your mouth with a dollop of metallic tasting lard. The first bite of breakfast tasted, well, like poison. I arrived at the following routine. Place bowl of cereal on deck balcony and face the headlands. Place food in mouth. Pace forth and back on the deck, chewing once for each step. I must swallow the bite by the time I return to the bowl again. Repeat. When finished: brush, floss, swish and gargle with hyper-salinated baking soda water. Rest.

Water tastes uncomfortably like metal. Apparently it comes from the salts and minerals, but also its the flavor of dead tissue in my mouth sloughing off. It makes it difficult to stay hydrated. New routine: Brew 1 cup of green angel tea from chinatown. Sip. Imagine nectar. Sip. Imagine nectar. Repeat until tea is gone. Brush. Gargle. Rest. Repeat three times a day.

The right side of my neck now sports a burn. I bought an aloe/water spray at Whole Foods. Just straight aloe – no dyes, alcohol, whatever. Upon returning from rtx, spray on neck. Repeat three times a day.

Today after treatment I felt like I’d been kicked. Not in the way that everyone else here feels kicked, but just a shadow of it. I guess I say this mainly for them – if I’m feeling this cruddy, my god, how do they endure? ¬†I have 12 more days of this. ¬†Twelve never before seemed like such a big number. ¬†I wrapped my arms around myself, looked down and beetled slowly down the street. I trained my sight on the line in the pavement. One step after another, just following the line. The tiny crack was filled with detritus – pollen, bits of plastic, crushed leaves, dirt. So much that we leave invisible.

I thought of a Russian ascetic, he was a priest, I think, in the 17th or 18th century and he and his sister (or perhaps it was his wife) were banished to the frozen barrens of Archangelisk or someplace. They trudged for weeks through the fields of snow and ice.

His companion was famished and exhausted. How much further must we walk? she asked.

To the end, he replied. To the very end.

And he continued walking.

Blast

John Hersey described in exquisite reportage how in the weeks following the Hiroshima blast the survivors were afflicted by devastating changes to their bodies.  They did not understand yet what had happened to them, but their hair was falling out, they were weak, they were vomiting.  What had happened to them?  Matter had simply given up its energy.  And they had found themselves in the line of fire.  What is it about our 21st century relationship to this process that, in both its most fully expressed and its diminished form, yet strikes us still?

Anna came up for the weekend from Hopi.  I met her at SFO and we took BART and the bus back from the airport.  I wanted her to revel with me in the public transportation.  We napped, so tired were we, and we awoke and ran to the corner theatre for the last showing, period forever in this city, of Departures, and afterwards bussed and largely walked to the Thursday night fete at the California Academy of Science.  We ate hand-raised free-ranged pork tacos and watched a physics teacher be pressed between two beds of nails with a cinderblock placed on top and then hit full force with a sledge hammer.  The physics teacher shot a ping pong ball straight through a beer can with a self-designed vacuum gun and sucked in a gas heavier than air so that he sounded like Darth Vader. If only to be a gear head in this city of cities and assume sufficient marginal command over matter and energy to have it do your bidding, creating magic so that all you need do is enter a destination into a telephone and the device divines your current location from the miracle of satellites and geographic positioning systems and can tell you that you need only walk 100 feet to your right and in three minutes a magical Miyazaki-like bus will materialize out of the darkness and carry you home safely to slumber.

The next day Anna accompanied me to my treatment, she witnessed the bolting, the zapping, the incremental burning of skin, she met the rad RN and the first year resident, and reminded me to keep sterilizing my hands. ¬†We walked up the block and peeked in the shuttered storefronts – the Czech bar and Mani + Nanny salon, and returned on the 38 Limited Geary to the Red Bike and dang if they didn’t make a perfect shot and I ate a peanut butter and jelly and banana sandwich with extra peanut butter and I think I could taste just about most corners of it, so happy was I. ¬†We took the bus to a thing called the Metreon and we watched Harry Potter – part of it was in something called 3-Dimensions. ¬†And I thought, man, maybe I should adapt a screenplay that has no character development and no narrative drive and just seems to go on and on with bearded wizards and murky cinamatography. ¬†It can’t be that hard. ¬†Maybe I could also start an international chain of electronic stores – those things seem to make money. ¬†We had dry drinks at the Redwood Room with my cousin Inta and ate Faux Gras – chicken instead of goose livers – that tasted of metal, metal, metal. ¬†It was night and then day and we just wanted trash so we lay in bed and we watched old episodes of Lost. ¬†We took our laptops to the Apple Store to replaced an old battery with incomprehensible innards that could no longer hold a charge and replaced some missing keys, except the replacement keys were in both English and Kanji. ¬†You see, we could just walk into a store in a place called downtown, we could just go there and we could sit with someone and they could fix it. ¬†We didn’t have to drive 5 hours to Phoenix. ¬†Anna typed “Excellent Coffee” into her phone and it told us to walk three blocks to Blue Bottle. ¬†The phone knew (no, not the phone, but a vast disaggregated database and some Software Agents that could parse the word ‘excellent’ and through some statistical arbitrage glean)¬†that that was, in fact, the place to get the most excellent coffee. ¬†And not Starbucks or Tully’s or any other joint. ¬†And it was a miracle in itself that Blue Bottle even exists. ¬†I watched a girl with zen precision and calm, dose, pack, and pull a shot so perfect in form that I wanted to cry. ¬†It is so hard, so incredibly hard, to do anything, even the most simplest of things, with perfection. ¬†I was so happy for her, so proud of her, for being able to do it. ¬†We bought two cream puffs the size of billiard balls. ¬†We split one and gave the other to a man (god he needed a cream puff) standing outside.

Later we lay in bed and you see, there was this thing called The Internet, and a speed, it’s 6 megabits per second – it can even be 10 or 15 megabits per second in this city – and with this speed, and this thing called The Internet, you can hit a virtual button in an application and a few minutes later have possession of the “Cold Cuts” season 5 Soprano’s episode, and get this: ¬†you can watch it. ¬†Just like that you can watch it. ¬†And in the middle of the episode, if you get hungry, really hungry, and you want a cheeseburger, you can type the words “Bill’s Hamburgers San Francisco” into your phone and hit another virtual button and a phone number appears and the number dials (except there are no more dials anymore, nothing even remotely like that, instead something called Software transmits a sequence of something called Bits to a 5E Switch through a series of handoffs between cell towers. ¬†It’s all energy, all different states of energy that have been encoded with vast amounts of information) and then you’re talking to a man at Bill’s Hamburgers – he’s not even beside you; he’s actually somewhere else a few blocks away- and you can tell him that you want two cheeseburgers and you ask if the fries are handcut, and my god, he answers, yes.

So then, you and your wife, you can put on your shoes and scarves and walk out into the cold mist. ¬†It’s 10:30 at night by the way. ¬†10:30 in the middle of the friggin’ night and there’s a place, you can walk there, and it serves burgers. ¬†Perfect burgers and handcut fries. ¬†Outside your door is not just endless desert and buttes and stars and darkness, but instead buildings, and a movie theatre premiering Inglourious Basterds, and the hiss and roar and of the 1 California sucking from the overheard wires its elixir of energy that propels it on until it disappears in the foggy darkness. ¬†And then, there it is, Bills Hamburgers and the man is there, but in flesh and he hands us the grease spotted bag in exchange for crumpled green paper and soon we are home back in the same bed, taking bite after tasteless bite while Tony Soprano avoids and evades and shouts at Dr. Malfi that it wasn’t his fault that he hadn’t been there to help his cousin Ton on the heist 17 years ago, he would have been there, christ he would have, but he was jumped by a bunch of motherfucking cocksucking jiggaboo bastards. ¬†And you can wish that you could write, hell – deliver, a line so ugly that it perfectly expresses a person’s character. ¬†A line, a mountains of lines, written and delivered over seven years that dove so low (Oh Mary-Elizabeth and Barbara, you’re both going to hate me for this) that they emerged on the other side as arguably some of the best writing ever in the American language.

The next day, Anna dried herself off after her morning shower.  We lay in bed and she turned to me.  She had looked at the towel in the bathroom.

You’re losing your hair, she said.

Men of Cloth

Saturday afternoon. Anna and I sitting on the concrete floor of the Ferry Terminal. Exhausted I stare at the passing ankles and calves of the other shoppers. For 3 hours I’ve worked to inhale small portions of delectables. A mortadella hotdog from Salted Pig Parts tastes pallid and anemic. The fresh mozarella and clabbered cheese curds and goat cheese signal rancid. I want Tomales Bay oysters, imagining sweet cream, but the thought yet leaves me nauseous. I sample four gelato flavors: Dulce de leche, dark chocolate, vanilla bean, and grapefruit Campari – all marginally palatable in the same way. Butter hits the tongue like oil.

This vast building is a temple dedicated to the servicing of the two inch piece of flesh inside our mouths. Sitting there on the floor, I turn to Anna and tell her that I would rather have my dick cut off* than forever lose my sense of taste. She rolls her eyes at me. That doesn’t give me any great comfort, she says. And please don’t put that in your blog, she adds.

I have to think for a moment about my sentiment. Off the bat, I definitely hope no one takes me up on the offer. But then I wonder, why the thought? With diminished taste I feel a bit as if I’ve been severed at the waist – there is so little pleasure in feeding. And certainly, the feeding and preservation of one’s own body could preclude the procreative urge. But it actually shouldn’t work that way. The desire to pass on my genes should outweigh everything, absolutely everything, else. The Senegalese gentleman (see below) on some level actually had it right. And so would the equation be altered for me if I didn’t already have a child? If push came to shove which would I choose?

Apparently there was some big brouhaha a few years ago when Carlo Petrini visited the Ferry Terminal. In his book chronicling the history of the slow food movement, he lambasted the market and epicurean stalls for being too precious and classist, for catering exclusively to the well-heeled.

Forget it, Carlo. Do you really mean that? First off, twenty years ago in the US, food terroir basically didn’t exist. And neither did any of these meats or cheeses or exquisite heirloom vegetables. And now, thanks in part to you, they do. And the world is a better place for it. And right here, right now, don’t tell me about the bourgeois power structure undergirding 17th century portraiture. A blind man will gladly take anything he can get. A three dollar burrito? A dollop of tsar nikolai beluga? I would take anything if I could simply taste it.

*I lifted this line from a story told by my friend Emmanuel. Years ago he was riding in a Metro car somewhere in Paris. For the sake of the story, I’ll say that it was at night and the car was practically empty. Emmanuel had spent three years in the Peace Corp in Senegal and while there he’d learned to speak Woloof. So years later he’s sitting in this Metro car and it’s just him, two West Africans and an elderly priest in his black vestments and white collar. Metro doors slide open and a stunningly beautiful woman steps into the car. One of the Africans looks to the other and says in Woloof, if I could sleep with that woman for one night, I would have my dick cut off. The other fellow laughs. The woman and priest sit quietly unaware. Emmanuel stares ahead stonily trying to keep a straight face. A few stops later the priest stands to exit the car, but before doing so he turns to the first gentleman, smiles, and says in perfect Woloof, did you really mean that?

What I love: that among the five participants, the full story exists only in the mind of the Woloof speaker who remains silent. And that always there are those ethereal men of cloth hovering about, threatening to keep us honest.

Barbecue

This is where you get to hear the non-fun parts of what it’s like to have a portion of your body progressively cooked. I’m lucky- so far I’ve experienced Barbecue Lite. God knows there are people in this building who are experiencing far worse.

1. I feel tired. A deep tiredness that overtakes around 10 or 11. Sometimes noon. When it hits, if I can, I just need to lie down and sleep. Usually two hours. It’s hitting right now in fact so I’m thumbing on autopilot as I ride BART down to SFO to meet Anna. The tiredness feels as if my bodily reserves are all being enlisting to help repair the damage being inflicted on my neck.

2. Hunger. I need to eat constantly – every 3 to 4 hours, I crave protein and fat. In the mirror today my body was beginning to appear ever so slightly withered as if it was beginning to consume itself. Which it is. CatsM lost 35 pounds and would spend a day nursing a milkshake that killed her to swallow. Losing 10% of your body weight leads to a feeding tube. You don’t want the feeding tube. For me the Maginot line is 135 pounds.

3. Taste. And here’s the rub: I’m hungry as hell, but food tastes like clay. Over the last week it’s felt as if layers of my taste buds have been peeled back resulting in a uniform deadening of taste. I began to lose salt first (soy sauce now tastes sweet. Salami tastes like sweet meat), then some of the more nuanced flavors – cocoa, aromatic herbs – and now I’m even losing the taste of sugar. I had a bowl of grapenuts with milk and bananas this morning and each of the elements tasted the same: clay in three forms – hard, soft, and liquid. Yesterday I had an italian hoagie from the Philly Cheesesteak shop. I’d had one the week before, and truly it was one of the best I’d ever had – these guys really really know what they’re doing. But this time round there was little of it. The textures were all the same, but as for flavor I had to summon it from my memory and imagination. I think of that story from the intense famine of wartime japan. Once a day the members of a particular village would gather in a room and each would be given a few grains of rice. They would place the rice on their tongues and a village member would slowly describe a delectable multi-course meal. Their eyes shut, they would listen to this bountiful feast.

Of paticular interest is water: it tastes like metal. As does butter. As do a lot of things. And I still have sour. And I still have bitter. Which makes me wonder if pleasurable sensations are the gratuitous ones and are hence the ones to leave us first. What remains are the foundational sensory nerves and corresponding pathways – the warning bells and flashing red lights that tell us DANGER DANGER something is going wrong. It prevents us from licking lead (though isn’t lead paint suppose to be sweet? I can’t recall from when I use to eat it as a kid. And antifreeze is suppose to taste kind of nice – that’s why condors go for it) and chowing on arsenic and cadmium. At the very least our tongues need to work well enough to prevent us from killing us. That’s what drove the evolution of taste in the first place – it’s job was to steer us clear of the bad stuff and – as in sex – incent us to steer toward the good. So you peel away the pleasure. And then there’s pain. When all is said and gone, isn’t that usually what we’re left with?

The Yanker and the Zapper

Just in from my friend Danny:

What strikes me first in this email is not the email but the To: list.¬†First, it evinces that you are a collector of people. ¬†I’ve been hearing¬†about some of these people for over 20 years. ¬†¬†Second, I notice in the¬†list a few curious and bold names, particularly David Eisele and Jeane¬†Quivey. ¬†¬†This is an interesting stratagem, to include the yanker and¬†the zapper, in your update. ¬†¬†They either will despise you for¬†trivializing their life’s work (which in both cases is momentous and¬†unachieveable by 99%+ of humanity), or bond with you for your¬†irreverence to their acheivements.

He’s right on that. ¬†I guess I am a collector of people, in the same way that people are collectors of things. ¬†We treasure the memories that we have assigned to things (all those tchotchkes in our houses are mnemonics intended to remind us of different events we’ve experienced in our lives. ¬†Except some times we cease to see them.) ¬†And resident in people are all those shared memories.

To lose people is to lose a part of oneself.

But beyond that, people are so friggin’ cool.

Regarding the bold inclusion of my surgeon and radiation oncologist, I guess it’s symptomatic of the experiential Tourette’s that I’ve been expressing of late. ¬†Do something bold and unqualified regardless of consequence. ¬†At the same time, I feel I need to cc them in the interest of full disclosure. ¬†And I also hope it will keep me honest.

Dr. Eisele, Dr. Quivey, Dr. Shiboski, Nurse Tang – if you do choose to read this, I’m counting on you to keep me honest.

And lastly, I have only the utmost reverence for the yanker and the zapper as practitioners, but more importantly as human beings. ¬†Any trivialization of their life’s work and their persons in part reflects my own inability to communicate the immensity of it, as well as the responsibility we all have to keep one another humble. ¬†In the end I’ve chosen to place my well being in their hands. ¬†I doubt there’s any higher commendation.

Sparks

I met CatsM today. For those who haven’t read below, this is the chick who had a stage IV tumor of the parotid. Two months after finishing her last cycle of chemotherapy the punks have recurred in her lymphatic system. She said she’s actually proud of how strong her cancer is – it resisted even the goddamn chemo. And unfortunately this gal is worthy of a strong opponent.

It turns out I was wrong: when I wrote my last post she wasn’t within a six mile radius. It turns out that at the time she was only two blocks away. We’re living in the same neighborhood. I’m lucky. I had a tumor. Everyone around me has cancer.

But there we are, the two of us in this coffeshop, both of us members of the Club of Scarves intended to hide our beautiful exquisitely rendered scars and protect our forever sun sensitive necks. So where we at? I’ve had two surgeries so I’ve bested her one, but she had some chemo during her rt which made the whole experience pukable. Her body is a toxic soup of chemicals and nasty things that she’s trying to kill and in the heart of it she didn’t shit for two weeks and she puked up so much of the world that eventually she was puking up just water. Hands down she’s fighting the bigger one. Bless her heart. That’s actually a request to whomever is reading this.

She offered to take me out – I’m a guest in her city afterall. I told her forget it, I’m actually on a medical vacation.

Well I am too, she said.

Really? I asked.

I am so lucky, she said. So damn lucky. Before I had this, I was so unhappy. I was burnt out. I hated my job. I was fighting with my boss. I was fighting with my boyfriend. Since my diagnosis, it’s been the happiest time in my life. I’m so happy.

I wouldn’t believe it if I didn’t know it to be true. My 53 year old Czech Chernobyl friend tomorrow boards a plane to Tahiti. Last fall she was at the base camp of anapurna. This morning she bought a bowl of soup for her lunch, walked outside and promptly gave it to someone asking for change. Whatever. She’s spreading her wings at a point in her life when most people are tucking them in.

And I whither before the clear eyed gaze of the head scarved women who walk so calmly, scared, and forthrightly into the clinic.

Each morning I bump space with an elderly Vietnamese man in the men’s waiting room. He doesn’t speak much English and he must be in his 70’s which puts him in his 30’s during the Vietnam war. That guy no doubt has a story to tell. The first couple days we sat across from one another and nodded. A few days later we started to smile. A few days after that we would look at each other and laugh. It turns out we share the same linear accelerator table. If I show up early I scoop him. If I show up late he takes my spot. A few days ago that’s just what happened. When he stepped out from the treatment area he pounded me on the shoulder and laughed long and hard from the gut. He and I have never spoken.

It’s true that you can get there. But who among us would willingly pay the price?

Temperature Stats

After my simulation my friend Danny and I sat for a while in the lobby of Mt. Zion discussing the course of treatment.

The stats:

Without radiation:  40-90% of recurrence.  100% chance of losing the facial nerve with further surgery.  In addition 2-5% chance of malignancy.  Using ballpark math, that equates to a 1- 4.5% chance of having a malignant tumor or and/or a 40-90% chance of eventually losing the facial nerve.

With radiation:  5% chance of recurrence.  And a .001% chance of a secondary malignant tumor unrelated to the parotid.  Plus the side effects.  That leaves me with:  .025% chance of a malignant parotid tumor, a 2 Р4.5% of losing the facial nerve from a recurrent benign parotid tumor, a .001% chance of a secondary malignant tumor, and a 100% chance of reduced blood flow to my jaw and teeth, as well as heightened sensitivity to the sun.

Of course, the stats are generated by people. ¬†And in general I don’t trust people.

Can I have a moment to think about it?

While pondering this with Danny, a crew of firemen charged into the building and anxiously began examining some piece of equipment behind us.

You never know what or when its going to blow.

© Andrew Lewis

© Andrew Lewis

Friends

These pictures were taken during my simulation in which they made my mask and made some tomographic images to develop my treatment plan.

© Andrew Lewis

© Andrew Lewis

I’m becoming pretty intimate with this machine. ¬†The green laser beam is used to line up my body so the right areas get zapped. ¬†The lining up part still seems a little fishy to me.

© Andrew Lewis

© Andrew Lewis

The radiation oncology resident taped a wire onto my neck so they could better identify the surgery field that had been dissected. ¬†I like this picture because it feels particularly corpse like. ¬†It’s always a nice reminder. ¬†Apologies to those who don’t want to be reminded.

© Andrew Lewis

© Andrew Lewis

This is my friend.  They created the mask during my simulation in a process that was similar to water boarding except without the torture.  They soaked the compound-impregnated mesh cloth in warm water, draped it over my face and bolted it to the table.  My hands were bound with strips of cloth, pulled down and tied to my feet (the idea being to keep my shoulders taut).  I lay there for 20 minutes, waiting for the thing to harden.  I like the anguished  Munsch-like rictus Рif ever there were an outer expression of my inner state of being.

Note the masking tape with the guidelines penned in with a felt-tipped marker. ¬†The mouth prosthesis intended to keep my tongue in place was fashioned from a popsicle stick, half a piece of cork, some masking tape, and a pack of sculpy. ¬†We’re talking Apollo 13, here.

I love these guys.

Fog Horn

I awoke this morning for the first time in San Francisco feeling a little scared.  I lay for a long time in the darkness listening to the wind chimes and the dirge of the fog horns.

I dreamt last night that I was being chased by a man on a motorcycle.  It was dusk.  I was in a moving truck and I pulled off the road into a snowy field.  I climbed out and dove head long into the snow and I buried myself many feet below except that I closed myself in entirely and then I could no longer move.  I could no longer breathe.

I read last night about competing methods of rt and was reminded again that this is no child’s play. ¬†This shit is something that under normal circumstances one tries to avoid. ¬†How could I so willfully and with relatively little forethought have subjected myself to it? ¬†I’ve probably spent more time deliberating over whether to purchase a particular car.

Last night I also cruised through message board posts from people with questions who were undergoing similar treatment. ¬†Call it bad popcorn. ¬†There is so much body wreckage minor and major in this mine field – I don’t want to tread it. ¬†Except that I am. ¬†I awaken right in the middle of it.

What it looks like

Nothing remarkable,

but at the same time fantastical.

From my perspective I can gather a little information through the white mesh of the mask. ¬†I see a trace of the green laser beam cutting across the tip of the tongue depressor. ¬†I’ve tried to check if it hits the same place each time. ¬†Sometimes I can see the face of the linear accelerator as it repositions around my head. ¬†When they shoot x-ray images I see a broad deep blue flash.

Planet Krypton

I’m midway through my second week.

This morning for the first time I decided to open my eyes and see what I could through the mask. The face of the large machine (I don’t even know what to call it) slowly circled and hovered proximate to my neck and jaw. I felt like I was staring into the mouth right at the pearly teeth of a great white.

What if someone comes up and offers you two million to do six rounds with Mike Tyson? Yeah, sure, I can do that. So first round you hop into the ring, for two minutes you dance around a bit, all is good, fun even, and then he pops you one. And then things change. This suddenly doesn’t seem like such a good idea anymore.

My side effects have begun to manifest themselves. Yesterday my morning cup of coffee tasted funny. My saliva is turning sticky. The inside of cheek feels abraded. And if sunlight strikes my neck it instantly feels like a sunburn. No one need remind me to keep it covered.

From the very beginning of this adventure I’ve wondered about the Homer Simpson factor: what happens when you put your average clod in close proximity to a nuclear reactor?

Yesterday in my weekly meeting with Dr. Quivey I asked how they knew if they were succeeding, how did they know they were actually getting the tumor cells?

She looked directly at me with a gentle clear-eyed intensity.

We don’t, she said. And it’s incredibly frustrating. We are in the position of only being able to observe and manage the negative side effects.

But how do you know you’re right? The machines for example – do they ever get out of whack?

The resident quickly piped in. The machines are calibrated every night, he said.

Quivey concurred and added that they check and calibrate the intensity every day. As for the beam vectors they regularly check the alignments.

She once again smiled at me. But they’re machines, she added. And I don’t trust machines. Machines are not to be trusted.

And the 40 variable algorithms?

The same, she said. Sometimes we need to lie in order to get the algorithm to do what we want.

She seems to find great pleasure, glee even, in this. I think of Ahab’s mad glee that drove him to the bottom of the ocean and left Ishmael floating in his coffin. But that glee somehow also tells me that my rad onc is no Homer Simpson. To revel in the risk and the uncertainty, you must first understand deeply what those risks and uncertainties are, perhaps more deeply than all those around you. ¬†And therein lies the beauty: ¬†those who profess to know are liars.

On my busride home today I spoke with my friend Patrick. He asked about my plans and I explained that I needed to unpack, move into my new place, fix the Internet connection, write a bunch, perhaps do some other stuff.

My god, you’re on fire, he said. Perhaps this radiation is turning you into some kind of super hero. Maybe you should get it on a regular basis, he said.

He’s absolutely one hundred percent right.

Perhaps everyone should, I answered.

Dawa

Today I gave a doll to Dr. Quivey, the radiation oncologist managing my care. When I first told my daughter her name, she laughed and asked how I could possibly have a doctor named Quivey. Kwivi in Hopi translates to ‚Äúparticular‚ÄĚ or ‚Äúdetail-oriented‚ÄĚ or fussy. My Hopi friends concurred, though, that when it comes to a rad onc doc, this is probably a good thing.

The doll I gave her represents Dawa, the sun, but represents more deeply the radiant energy that not only grants us life, but has the power to take it away as well.

He looks nice. I’ve been looking at him for years now, but cannot at all profess to understand what he really means. But I do know what I see. I see rays represented by feathers – which in Hopi cosmology are also the vessel and vehicle for prayers. Eagle down is symbolically conflated with moisture and smoke and the seminal force that through intent is transmuted into life.

And I see that his mouth Рthe source of breath and utterance Рis also represented by a prayer feather. The lower portion of his face is blue, the water world Рthe subterranean from which all life emerges. The upper is composed of the two halves of the celestial vault and the cyclical waxing and waning of energy and life that occurs each day and in each year and in the course of all of our lives. The beaded horizontal line appears to be where we are Рthe thin material and terrestrial plane in which we exist for a moment. And the vertical bead suggests the channel by which we emerge from one world to the next. It’s the birth canal and the point of exit when we die. And if we live right, it’s the gradual and wonderful process of unfolding as the world reveals itself over time.

I feel grateful to my doctor and (hopefully limited) executioner. I wouldn’t want it any other way.

© Andrew Lewis

© Andrew Lewis

Pele’s Hair

I’m tired and its done with.

My car, parked on the Santa Cruz pier, is filled with my brother’s stuff. It’s night and I’ve done my best to decompress, eating a fish taco, drinking a beer, and staring out at the double masted boats floating in the placid harbor. The sun has set, it’s dark out, and its time to drive back to San Francisco on Route 17, the torturous curvy highway heading over the hills into Los Gatos and the valley.

I know what that road is about and I’m suddenly conscious of the load we are carrying – my brother’s life, his psychic distress, and the handful of volcanic rocks that 10 years ago he pilfered from Hawaii. Ever since then his luck has not been so good and at different times he faults the rocks. We all grew up with the Brady Bunch and goddamn do we ever know the power of that pumice: after taking some while on their family vacation, Greg Brady almost died in a surfing accident. The power of these things are not to be messed with. And god knows, my brother has had his share of surfing accidents: broken cars, broken relationships, lost jobs, all manner of misfortune. And at each bad turn in the road he’s vowed that he has to retrieve those rocks and return them to Hawaii.

Which is fine. I support him in that endeavor except that I now find myself in the curious position of being the ring-bearer. I am in possession of these things – their totemic power real or imagined, it does not matter. I am the one now responsible for carrying them a few steps toward Mordor. I have to carry them over the mountains, into the valley and back to San Francisco, at night, in uncertain traffic. What have I stepped into? This is not at all something I wish to be part of. And then suddenly I sense that I need to make an offering. I need to make a sacrifice. As we leave our restaurant table, I cast about looking for something, anything. I take a piece of jicama from my plate and some tortilla chips which I crush up and wrap in a napkin. But as we walk down the pier I realize that a sacrifice can’t be a paltry leftover, it means giving of something important, something that matters. But what do I have to give? I ask my friend Eva for something sharp, a penknife or safety pin. She wants to know why. Just to prick my finger, I tell her. Her face immediately registers concern, even fear. Are you crazy? she asks. I explain about the rocks, but she shakes her head in frustration – they’re rocks, she says. This is stupid, we just drive home.

I insist and walk away over to a fisherman who in the darkness is longpoling off the pier. I ask if he has a spare fishhook. He too looks at me as if I’m crazy, which at this point I guess I am. What for? he asks. Eva takes my arm and leads me away. Communism has done its work on her – prayer is a fiction. She is dyed and true a spiritual materialist who refuses to believe in superstition. But she has no idea from where I come. We stop by the car and I walk away to the railing and I lean out over the black and inky water. I think of that water, that immense body from which we all emerged. I think of it extending almost boundlessly to the west out into a deep and impenetrable darkness. I think of those specks of land in its midst, a place in which the core of the earth itself is heaving up, molten and hot and breaking forth into the air and universe. I think of Pele, of her anger and spiteful temper. I think of her boundless hurt, of her wanting to be heard. I tell her that I want to reconstitute her, but I am only a servant in this. I can only play a small part. But I can do my best. I will do what I can to return what is hers, to make her once again whole. I have her interests at heart. Trust me. Protect us and carry me home. I unfold the napkin. The contents fall and drift silently through the air and I feed the water.

One Hundred Suns

Mid-day on Friday, Hiroshima Day, I drive to Santa Cruz with my current roommate Eva Pavelka. ¬†She has the day off and I have just received nominal permission from my brother to go to his old house and retrieve his most important belongings. ¬†He and his former girlfriend are no longer speaking and he’s unable or afraid to enter the house and if these things are not removed they will all be put in the trash. ¬†He has listed on the back of a napkin the items I should look for: ¬†his bag of volcanic rocks from Hawaii, a taillight, a small box of feathers that had belonged to our mom, a box of photos, some clothes, a sleeping bag, a book about the 20th century. ¬†I ask Eva to come to bear witness and to help intervene as a neutral party in case there are any issues.

As we drive into Santa Cruz, my brother calls and ask us not to get his things. ¬†It’s all over, he says, he wants nothing to do with his girlfriend, he doesn’t want any further violation, it’s all over, he says. ¬†But it’s too late, the train has already left the station. We have entered Santa Cruz and we drive to his house and his girlfriend welcomes us into the living room stacked floor to ceiling with his boxes. ¬†It’s complete chaos. ¬†I set to going through them, quickly, methodically, with absolute intent. ¬†The rocks are outside. ¬†Journals are found. ¬†Photos. ¬†The small box of feathers. ¬†I find wonderful books, bought new, still in their bags, lost in the bottom of boxes. ¬†In one, I find a stunning art photo book, 100 Suns, documenting in large format photographs 100 nuclear mushroom clouds. ¬†The book, new, untouched, still taped up in mylar, feels terrifying and hot. ¬†I know why my brother has it. ¬†Our father had died of a brain tumor. ¬†In the 1950’s and 60’s he was researching mining history and spent several summers in Nevada at the time of the nuclear test blasts. ¬†I grab the book and without thinking thrust the volume into one of the boxes that Eva carries outside to put in the car.

The girlfriend is sad and distraught over the breakup.  At some point her mother comes out Рa sweet woman, with the air of being intensely calm and tired, she is dying of ovarian cancer.  Over three hours we find most about everything.

We are about to wrap and leave, when the girlfriend asks tentatively if we had taken 100 Suns. She was afraid to ask, had been wanting to ask, but couldn’t. ¬†It had been promised to her as a Christmas present, but she had never received it. ¬†Of course. ¬†As far as I knew, it was hers to keep. ¬†Eva retrieves the book but I ask if I can unwrap it and for just a moment look at the pictures. ¬†When I am finished I stand and carry the book to the girlfriend, for a moment the book rests in the center of a triad – she, Eva, and myself.

Perhaps herein lies my brother’s genius. ¬†Who cast these vectors that have traveled through time and space to intersect here between us in this fraction of a second in the nucleus of this book? ¬†The girlfriend and her mother burning into dissipation; me, each morning gratefully submitting to a machine that fires high dose x-rays through my skull and brain; and¬†Eva, who one morning twenty years ago had awoken in Czechoslavakia to learn of a burning reactor hundreds of kilometers away that by then had already dosed her body with toxic levels of radiation.

Dry Heat

This afternoon I had my dry run before I begin six weeks of radiation.

Whoa.

My daughter asked me if it was fun.  Yes it was, I told her.  And it was also scary.

I strolled into the basement of Mt. Zion, they pointed me to the men’s changing room, I rummaged through a box of striped gowns (they reminded me of Holocaust wear), threw one on, was guided into a sweet catapulting room with cherry floors, lay down on a softly cushioned table, jammed a prosthetic in my mouth to prevent my tongue from moving and a few moments later two men bolted my head down with a mesh mask and split from the room.

Right on.  They told me they were taking x-rays which might have been a dumbed down euphemism for something else.  I heard a heavy whooshing sound, like the proximate breath of some very large reptile.  Every so often I would register an intense blue white flash followed by a strange sharp odor lodged somewhere between my nostrils and my tongue.  It smelled as if the air itself was burning.  Not cool.

I followed my breath. ¬†I tried not to swallow. ¬†I composed long sentences in my head. ¬†Not much different than any other time except for the swallowing part. ¬†I wondered about how much tolerance there was in the measurements ‚Äď what would I fry in my head if I tricked my neck a millimeter to the left or to the right. ¬†I tried not to trick my neck. ¬†I hoped that their measurements were right.

After 20 minutes it was over.  I mentioned the smell to the rad tech.  Only a small number of people can see and smell it, he said.  What’s up with that, I wondered.  We all have eyes and tongues and noses.  There shouldn’t be that much variability in this stuff, in our bodies, in energy moving through those bodies.  And in my mind, in this game, variability is also not cool.

I grabbed my stuff.  I snapped some pictures.  Rad tech John handed me a green appointment slip for my first dosing.  8:30 am.  Monday.