ES DVD available

Joshua Isaac, the epithelioid sarcoma patient who made a documentary about his illness, just started selling DVDs of the film at the My Left Hand website. Some of the proceeds will go to support sarcoma research. I embedded a trailer to Isaac's film in an earlier post.

Isaac, who is undergoing experimental chemotherapy for metastatic disease, is also blogging his experiences. His blog is memorable and moving.

Conference vignette

Parent conferences are scary. Worse than non-scan doctor’s appointments at this point.

It’s those chairs, I think, those little scaled down chairs that send your knees up to your ears and your dignity down to your shoes. It’s also that the only thing worse than being in trouble yourself is hearing about your kid in trouble.

But B.’s conference went well, with the possible exception of a little incident around the egg incubator. B., his teacher and some friends were gathered around, tossing out ideas for names of the chicks that will be born in a week or so. B. suggests to teacher and friends alike, “Why don’t we name one ‘Fuck’?” 

Because, you know, "Fluffy" is so played.

Fortunately, Mrs. F was mostly amused and sternly explained the school’s language policy instead of referring him to the office. B. was quite apologetic, appropriately so since he’s fond of lowering the boom if a swear word escapes one of his parent’s lips. I also gave Mrs. F big credit (she’s very much a sweet primary-grade teacher type) for telling the story using the word “fuck” instead of euphemisms like “swear word” or “the f-word.” It would have lost all impact.

L. and Big E. later spent a few minutes imagining a children’s book: A Chick Named Fuck. I’m not going to go there.

A major sacrifice

This is not a political blog, but I am a political person, and I was appalled by this.

For the first time, Bush revealed a personal way in which he has tried to acknowledge the sacrifice of soldiers and their families.

“I don't want some mom whose son may have recently died to see the commander in chief playing golf,” he said. “I feel I owe it to the families to be in solidarity as best as I can with them. And I think playing golf during a war just sends the wrong signal.”

As shows of responsibility (er, solidarity) go, giving up golf is not exactly plucking out one's eyes or committing hari kari.

Of course, it beats this (which, to be fair, was shot before pledge or, I think, Iraq):



Still: grrrrrr.

Update: He played golf after the date he said he made the "sacrifice." 

U and I

My ongoing misremembering and misquoting of Annie Dillard reminds me of Nicholson Baker's funny book, U and I. This synopsis is from Michiko Kakutani's 1991 review:

Mr. Baker repeatedly reminds us that he has read less than half of Mr. Updike's oeuvre, and he frequently misquotes remembered passages from Mr. Updike's books. What he proposes to do is show "how one increasingly famous writer and his books, read and unread, really functioned in the 15 or so years of my life since I first became aware of his existence."

The resulting book is a comically self-obsessed exercise in misreading, filled with absurdly amusing anecdotes and ludicrous fantasies and delusions. Mr. Baker is mainly interested, we quickly realize, in using Mr. Updike as a means of comparison: the eminent author is someone he can measure himself against, imitate, compete with and feel inferior to.

Baker's ego/competition stuff is funny, if sometimes embarassing, but he's probably right that we construct our literary sensibilities out of bits and scraps that we twist in directions pleasing to us, a process something like birds gathering and arranging fiber and grass to make their nests.

The things we carry

Almost two years ago, during the hot, dazed August of my diagnosis, I was sitting at my desk. Word had gone around about the cancer; I was having painful but sustaining conversations with my friends and co-workers, explaining what I had learned, what I thought it meant, and appreciating all the offers of help. (Of course, then, as now, I wasn't sure what would actually help.) Then another knock at the door. J. this time. 

He came in and we talked about the illness and his sorrow about it and he reached out casually to touch my shoulder -- and that effort to reach across the divide, to physically comfort someone he didn't really know all that well -- touched me so much that my mask almost crumpled into tears. We talked about practical things, possible personal connections to oncologists and such, and J. also told me a story from Annie Dillard about monks being instructed to carry their mortality like a hot coal.

I imagined cowls, a walk down long road. I imagined the heat and pain of this constant companion; but also how, possibly, it might sharpen one's perception of the world. But who would choose to live this way? And why? J. and I didn't talk about that -- we were at work, after all -- and I didn't go back to Annie Dillard until almost two years later.

*

I think the dying pray at the last not ‘please’ but ‘thank you’, as a guest thanks his host at the door. Falling from airplanes the people are crying thank you, thank you all down the air; and the cold carriages draw up for them on the rocks. Divinity is not playful. The universe was not made in jest but in solemn incomprehensible earnest. By a power that is unfathomably secret, and holy, and fleet. There is nothing to be done about it, but ignore it, or see. And then you walk fearlessly, eating what you must, growing whatever you can, like the monk on the road who knows precisely how vulnerable he is, who takes no comfort among death-forgetting men, and who carries his vision of vastness and might around in his tunic like a live coal which neither burns nor warms him, but with which he will not part. 

*

Reality check. 

A "live" coal, not a hot one. No burning, no warmth. 

And what's up with the airplane? The 'thank you' at the last I get generally -- but not in a falling airplane, not in this universe. Dillard, you're nuts! (OK, OK, I believe airplanes figure into Pilgrim at Tinker Creek in various ways, so maybe the thank-you criers aren't as crazy as they sound to me.)  

*

My memory seemed to contradict the actual passage. No burning, no warmth? Talking to another wise friend helped me begin to start making sense of it. One can imagine a certain literal smoldering coal that could be carried somewhere in one's traveling effects but would require vigilance and attention. It wouldn't burn you -- if you respected it and remembered that it was there. Precious vulnerability and mystery. At other stages of my life, I do not believe I would, like the monk, elect to carry the knowledge of my vulnerability so closely; but since I have been handed a coal, I am trying to learn to attend to it and walk my road without fear.

Semantics

I was struck by this note in David Rieff's memoir:

... measuring the onrush (or, as physicians so curiously put it, "progress") of the disease...

Yes. Encroaching cancer is not progress. When I was first beginning all of this and still had no idea what I was in for, I finished two rounds of toxic chemo and had my scans. When Dr. S's fellow told me there was "progression," my heart leaped with excitement. I heard only "progress"; progress is good, right? Then, mortified, she clarified: My lymph nodes were still growing.

Some Rieff links and quick thoughts from me are here. 

Epithelioid sarcoma: the University of Washington experience.

A forthcoming issue of the American Journal of Surgery has an article on ES:

Epithelioid sarcoma: the University of Washington experience.

Wolf PS, Flum DR, Tanas MR, Rubin BP, Mann GN.
University of Washington Medical Center, Seattle, WA 98195, USA.
BACKGROUND: Epithelioid sarcoma is a rare sarcoma with a high local recurrence rate that frequently metastasizes to lymph nodes. We reviewed our experience with adjuvant therapy in patients with this disease. METHODS: Between 1990 and 2003, we treated 11 patients with epithelioid sarcoma. Patient, tumor, and treatment characteristics were analyzed, and effect of treatment on survival was evaluated by the Kaplan-Meier method. RESULTS: Nine men and 2 women were treated. Tumors presented on the trunk, the upper extremities, and the lower extremities. Five patients developed nodal disease. All patients underwent surgery for the primary tumor, and 7 patients had nodal evaluation. Ten patients underwent adjuvant chemotherapy, and 9 underwent radiotherapy. Recurrence developed in 9 patients. Five-year disease-free and overall survival rates were 46% and 65%, respectively. Chemotherapy and radiation therapy did not impact disease-free survival. CONCLUSIONS: Although surgery remains the primary treatment modality, multi-institutional trials are needed to develop more effective adjuvant therapy for patients with epithelioid sarcoma.

No blockbusters here, though I found it interesting just how heavily men were represented in the series (9 out of 11) and how common presentations in the trunk (5 out of 11) were. Forty-five percent of the group had nodal mets -- the UW authors throw out a range from other studies of 22 to 48 percent. Like pretty much everyone else, the authors here are convinced that a big tumor and node problems are bad news. The authors don't find any benefit to chemo, but the series ended in 2003 so most of the patients received adriamycin/ifosfamide-based therapy.

Lemme know by e-mail if you want a copy.

Playground vignette

Flush with hemoglobin and crystalline spring sunlight, I stride out on to the playground to find B. after school instead of, as I often do, lurking around the fringes waiting for someone to bring him to me. I find him next to the swings on a big stack of tires, co-existing but not really playing with his friend M__. When she sees me, M___ swivels with an accusing look on her face. Her hair is glossy and black and tied back in a thick pony tail. "B. says you have cancer," she says in roughly the same tone she would say, "B. says you let him ride a motorcycle to school" or, "B. says your family has a giraffe for a pet instead of a dog."

*

Her question flashes me back maybe five years. B. is two or a little shy, and he's sitting in a cart seat at TJ Max while the clerk fills our with bags and engages him. Suddenly, the little B. takes the measure of the bagger and says, loudly, "You're black!" I have the feeling that someone has instantly squeezed all the air from my lungs, even though B's comment is a) factual; b) inevitable in one of the whitest states in the country; and c) not pejorative in the slightest. Still -- it's amazing how the mind races, even when suddenly deprived of oxygen -- the clerk may be offended, it's got to be hard dealing with all the comments, some of them probably nasty. But the old guy laughs and says, "Yes I am!" The air floods back into my lungs. Later I laugh about the clerk's grace and my surprising clumsiness.

*

On the tire stack, I try to summon the TJ Max clerk's wisdom. "Yes, I do!" I say cheerfully. M___ turns away to scrabble higher up the tires, her pony tail bobbing. I can't imagine what she is thinking. What is cancer to her -- something that killed a grandparent? Something scary overheard from adult whispers? Nothing at all? I want to give her some of my kid spiel about cancer -- that you can't catch it from me or Bay, doctors can often cure it, etcetera -- but I refrain. B. is tugging on my hand and beginning to tell me about how he beat a second grader in chess by promoting a pawn into another queen.

What's up with me

I've taken 18 temozolomide pills so far -- $4336.20 worth, not that I'm counting. The drugs side effects have been milder than advertised; some nausea and constipation, that's about it. My once luxuriant eyebrows are more like stubble now, but the gemzar/taxotere I took before starting temodar caused that. I may be losing more hair, but I lopped off my hair anticipating alopecia so it's hard to tell. I'll finish the temodar cycle over the next 24 days, and then we'll have the next dramatic, high-anxiety scan.

*

Meanwhile, I'm enjoying a bout of blessedly tedious health. My pneumothorax has either healed or become completely asymptomatic, and my blood counts have actually improved dramatically over the last couple of weeks, especially in terms of the red blood cells that are crucial for ferrying oxygen. I've hovered just above or below 10 for hemoglobin (13 or so is normal for me) for more than a year, and I'm now up to 12 something. Being able to, say, walk to the mailbox without bending over short of breath is a big improvement to my quality of life; I'm grateful for as long as it lasts. 

Now it's time for the Temodar to take a huge dent out of the epithelioid sarcoma.

Note: This was originally titled "Me Update," which read a little Cookie Monster for my taste.

Man of Taste

Grant Achatz, a young Chicago chef whose restaurant Alinea is considered by some to be the best in the U.S., has beaten a virulent stage IV tongue cancer and is now back working in the kitchen. 

Problem is, he still can't really taste.

From an excellent New Yorker profile:

Ten months ago, Achatz was given a diagnosis of tongue cancer. He was informed that if he did not start treatment immediately he would die. “You have Stage IV cancer,” he remembers being told by a doctor at the University of Chicago Medical Center. “There is no Stage V.” Doctors removed lymph nodes from his neck; a pink scar now extends from an inch below Achatz’s left earlobe to an inch above the collarbone. He was also given twelve weeks of chemotherapy treatment, which made his hair fall out, and six weeks of radiation, which nearly swelled his throat shut, and caused the skin inside his mouth and on his face to peel. “They burned me so bad I had to wear a burn mask,” he recalls. The therapy also destroyed his sense of taste. Although it is slowly returning—the process can take a year or more—he is in the precarious position of having to create and serve food that he cannot really taste.