Expiration dates

Leroy Sievers of NPR's My Cancer blog is usually worth reading (and listening to, when he's feeling up to going on air). He has a horrific colon cancer that has metastasized in all sorts of vicious ways requiring all sorts of hellish interventions -- and yet, there he is working professionally and savoring life when possible personally.

I found some "difficult hope" in this recent entry he wrote after Ted Kennedy's sad diagnosis:

When a limit has been put on your life, when all of a sudden life seems more urgent, you want to know.

"How long?"

When I asked that the first time, the answer was about three months. Here I am, almost 30 months later. What's the lesson here?

I guess it's, what's most important is the living, not the preparing to die.

This can't be said enough, I guess. Sievers' prognosis (30 months and counting from three) also reminds me that prognosis is not destiny -- it's often not even tied to reality.

He posts, but doesn't understand

I won't pretend that I have any idea of what this recent abstract from the International Journal of Surgical Pathology that I harvested from PubMed means, but I am interested to see more variation in the way the disease looks to pathologists than I previously thought existed.

To digress slightly, I myself am an example of unusual ES pathology: My official diagnosis is that I have the more aggressive proximal subtype of epithelioid sarcoma, but the review pathologist looked at the tissue and pronounced that it was of the distal subtype. All eventually concurred that the sample that went to Harvard for review was anomalous and the diagnosis remained proximal, but clearly there were at least some distal tumor cells in my tumor, perhaps explaining why the course of my disease has been a little slower than it could have been, given its problematic location and metastasis.

The takeaway here is to get your pathology reviewed by a good sarcoma pathologist -- Sharon Weiss at Emory (thank you commenter), Christopher Fletcher at Dana Farber, the armed services institute, someone at a big referral center, etc. And if you've got views on what significance (if any) this abstract has, feel free to enlighten me in the comments.

Anyway, the abstract ("myxoid," by the way, refers to a semi-transparent, glutinous, mucous-like material):

Myxoid Epithelioid Sarcoma: Clinicopathologic Analysis of 2 Cases.

Fadare O.

In the nearly 4 decades since its original delineation as a distinct clinicopathologic entity, several morphologic variations of epithelioid sarcoma have been described. Proximal, angiomatoid, and fibroma-like variants have been reported, as have cases displaying significant hyalinization, calcification, and/or ossification. Furthermore, it has long been recognized that epithelioid sarcoma may display focal myxoid change. Herein, the authors describe 2 examples of epithelioid sarcoma that displayed diffuse myxoid change. Both cases were otherwise typical, both morphologically and immunophenotypically, of epithelioid sarcoma. The tumors in both cases were localized, and the patients were treated with wide local excision followed by adjuvant radiotherapy. The patients are free of disease recurrence after 25 and 37 months of follow-up. Differential considerations that may arise because of the composite of morphologic and immunophenotypic findings noted in these cases are discussed, especially if encountered in a small biopsy. These cases further expand the morphologic spectrum of epithelioid sarcoma.

A four-time cancer patient's notes

Carter aide Hamilton Jordan beat cancer three times over 24 years, finally succumbing recently to mesothelioma. In a memoir, he published his "top 10 tips for cancer patients," which the New York Times Well blog helpfully summarized, along with some more information about Jordan. I found these tips particularly resonant with my ES experience (follow the link for all of them):

No. 2: Seek and know the truth about your illness, and prognosis.

If you don’t have the facts, and don’t know the truth, you won’t make good decisions. It takes courage to ask questions about statistics and your prognosis.

No. 3: Get a second opinion.

We wouldn’t buy the first computer or cellphone we looked at. Shop around when your life is at stake….I got second opinions on all of my cancers.

No. 4: Determine upfront how broad or narrow your physicians’ experience is.

If you have something that your doctor says, “I’ve never seen this before,” get another doctor. You want your doctor to be very familiar with your disease.

No. 5: If you have a poor prognosis, or a rare form of cancer, try to get to a center of excellence.

If your doctor doesn’t believe he or she can cure you, you won’t believe you’ll be cured.

No. 6: Do not allow your caregivers to project their values, goals and expectations onto you.

In my book I tell the story of a 68-year-old man who was diagnosed with PCa (prostate cancer). And this man is in very good health other than the PCa. His 35-year-old doctor reasoned that since his life expectancy was only five or six years, that he recommended that the man do nothing for his PCa and told him it would take the PCa four or five years to kill him. This man wanted to live to be 80 or 85. He didn’t accept that. He had his prostate removed, and many years later he’s in good health, and probably will live to be 80 or 85. Don’t let your doctor project his or her expectations in life out on you.

Metastasis mysteries (and innovation)

I have, oh I don't know, an interest in metastasis, so this passage from a recent New Yorker article by Malcolm Gladwell caught my eye. The piece argues that big ideas aren't as rare as we think, and spends a lot of time on a venture Nathan Myhrvold, a former executive at Microsoft, and a group of multidisciplinary experts, have formed to generate patentable ideas.

Often the process involves convening a group of extremely smart people, seeding the discussion, and letting things roll. Here's a riff I found particularly interesting:

“Lowell came in looking like the Cheshire Cat,” Myhrvold recalled. “He said, ‘I have a question for everyone. You have a tumor, and the tumor becomes metastatic, and it sheds metastatic cancer cells. How long do those circulate in the bloodstream before they land?’ And we all said, ‘We don’t know. Ten times?’ ‘No,’ he said. ‘As many as a million times.’ Isn’t that amazing? If you had no time, you’d be screwed. But it turns out that these cells are in your blood for as long as a year before they land somewhere. What that says is that you’ve got a chance to intercept them.”

How did Wood come to this conclusion? He had run across a stray fact in a recent issue of The New England Journal of Medicine. “It was an article that talked about, at one point, the number of cancer cells per millilitre of blood,” he said. “And I looked at that figure and said, ‘Something’s wrong here. That can’t possibly be true.’ The number was incredibly high. Too high. It has to be one cell in a hundred litres, not what they were saying—one cell in a millilitre. Yet they spoke of it so confidently. I clicked through to the references. It was a commonplace. There really were that many cancer cells.”

Wood did some arithmetic. He knew that human beings have only about five litres of blood. He knew that the heart pumps close to a hundred millilitres of blood per beat, which means that all of our blood circulates through our bloodstream in a matter of minutes. The New England Journal article was about metastatic breast cancer, and it seemed to Wood that when women die of metastatic breast cancer they don’t die with thousands of tumors. The vast majority of circulating cancer cells don’t do anything.

“It turns out that some small per cent of tumor cells are actually the deadly ones,” he went on. “Tumor stem cells are what really initiate metastases. And isn’t it astonishing that they have to turn over at least ten thousand times before they can find a happy home? You naïvely think it’s once or twice or three times. Maybe five times at most. It isn’t. In other words, metastatic cancer—the brand of cancer that kills us—is an amazingly hard thing to initiate. Which strongly suggests that if you tip things just a little bit you essentially turn off the process."

The panel started riffing around the idea of a mechanical blood filter that would remove cancer cells -- and found another company was already working on a similar idea... Wouldn't that be nice?

By the way, check out Natalie Angier's interesting piece on mets if you haven't already.

(I Can Get Some) Satisfice-ion

My friend LH was getting ready for a big trip with the family and, three days out, she was feeling overwhelmed about the massive amount of work it would take to get from point a to point DC. “I have this vision of all these things I need to do," she said, "but of course I’ll eventually give it up and start satisficing.”

You say that like it’s a bad thing, I said, surprised.

**

Sometimes I feel like what remains of my undergraduate degree is an unwavering, insane loyalty to an often-mediocre football team; some great friends; and a pillowcase full of disconnected intellectual trivia (“these fragments I have shored against my ruins” -- see what I mean?). But one idea I take out my bag, often, is Herb Simon’s concept of satisficing. Simon coined the term as a combination of satisfy and suffice -- to satisfice, then, is to quickly make a decision that meets your bottom-line criteria rather than agonizing over making the perfect decision.

Here’s some thoughts on the matter from the author of a blog (and book) called The Happiness Project :

Satisficers (yes, satisfice is a word, I checked) are those who make a decision or take action once their criteria are met. That doesn’t mean they’ll settle for mediocrity; their criteria can be very high; but as soon as they find the car, the hotel, or the pasta sauce that has the qualities they want, they’re satisfied.

Maximizers want to make the optimal decision. So even if they see a bicycle or a photographer that would seem to meet their requirements, they can’t make a decision until after they’ve examined every option, so they know they’re making the best possible choice.

Most people are a mix of both approaches. For example, one friend was a satisficer about renting an apartment, but a maximizer about buying an apartment...
In a fascinating book, The Paradox of Choice, Barry Schwartz argues that satisficers tend to be happier than maximizers. Maximizers must spend a lot more time and energy to reach a decision, and they’re often anxious about whether they are, in fact, making the best choice. (emphasis added)

**

In the context of cancer treatment, I think striving for maximization makes sense. Lots of studies indicate that better (eg, more experienced) surgeons get better margins. One recent non-sarcoma example that leaps to mind is a Sloan-Kettering doctor’s paper that found the long-term outcome of prostate surgery was strongly influenced by the surgeon's experience. Choosing third- or fourth-line chemotherapy for metastatic epithelioid sarcoma is by necessity an exercise in satisficing -- perfect information just isn’t out there -- but I do believe in consulting with at least a couple of experts to make the best possible decision, even if they disagree for largely “arbitrary” reasons, as one physician told me.

Living with cancer is different. Where I really try to satisfice, to suffice, to satisfy, is in how I allocate my time. I rarely have the energy to, say, maximize the tasks accomplished on an outing, or play every game my children desire during a particular afternoon, but I try to make the most satisfactory choices I can, and get on with life instead of feeling bad about the things I might do, I used to do, I dream of doing.

This purple stuff is trying to kill me

A few of my pathology slides somehow ended up on the internet, so I thought I'd put one here for the record. This is the yucky stuff -- big, bad, rhabdoid-like epithelioid sarcoma cells. I had hoped, before looking through the various images, that there would be some kind of terrible beauty in one of them. Nope. They are all banal. Like this one -- it could be a close-up of some hipster's recycled glass countertop or unfortunate Marmoleum choice. 

In praise of difficult hope

Hope may have feathers, it may float like Ivory soap, but its key characteristic for me is this: You have to put some weight behind it. That rock isn't going to push itself up the hill by itself. Hope is an idea put into action, a melding of thought and deed that results in something powerful -- the idea gains conviction from the action, and the action gathers reach and scope from the idea.

This is part of why Barack Obama's voice is so powerful. He taps into our sense that we need hope -- and action. I don't expect Obama to magically transform Washington (much less the United States, or our beautiful, miserable world) through the beauty of his face, story and words. But I do expect him to get some crucial work done because when he talks about hope in one breath, he usually talks about action in the next. He'll conjure up images of mutual respect, increased civility, finding common ground -- and then he puts some weight on it, by talking about how he'll build a working legislative majority.

I digress. What I really want to do here, because I haven't sorted out what I think about hope, is defer to Dr. Jerry Groopman, whose book The Anatomy of Hope: How People Pervail in the Face of Illness, has a lot to offer to people working to stay hopeful in the face of calamitous illness:

Hope is one of our central emotions, but we are often at a loss when asked to define it. Many of us confuse hope with optimism, a prevailing attitude that "things turn out for the best." But hope differs from optimism. Hope does not arise from being told to "think positively," or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality. Although there is no uniform definition of hope, I found one that seemed to capture what my patients had taught me. Hope is the elevating feeling we experience when we see -- in the mind's eye -- a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.

Here's some of Groopman's sense of how action feeds hope:

Hope can arrive only when you recognize that there are real options and that you have genuine choices. Hope can flourish only when you believe that what you do can make a difference, that your actions can bring a future different from the present. To have hope, then, is to acquire a belief in your ability to have some control over your circumstances.

A little more on the use of hope:

Each disease is uncertain in its outcome, and within that uncertainty, we find real hope, because a tumor has not always [SG note: Uh, Mr. Harvard, ever?] read the textbook, and a treatment can have an unexpectedly dramatic impact. This is the great paradox of true hope: Because nothing is absolutely determined, there is not only reason to fear but also reason to hope.  And so we must find ways to bridle fear and give greater rein to hope.

Will this hope charge up the immune system? Mute pain signals? Power some of us through to survival? I'm not so sure, and Groopman's chapter on the biology of hope isn't terribly convincing. But I know that it makes life richer -- and maybe, just maybe, lays the foundation for the kind of miracle that some of us need (and a few of us get).

Live Strong, Live Weak, Just Live

I visited the doctor last week, and the check-in area was laden with free stuff from the Lance Armstrong Foundation: bracelets, brochures, postcards. I do love free stuff.

As I wondered just how many yellow bracelets I could in good conscience take, my eyes drifted to the foundation’s “manifesto.” (The word “manifesto” makes me want to reach for a rock, but that’s another issue.) I read:

We believe in life.
 Your life. 
We believe in living every minute of it with every ounce of your being.
 And that you must not let cancer take control of it. 
We believe in energy: channeled and fierce. 
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything. 
This is the Lance Armstrong Foundation.

We kick in the moment you’re diagnosed. 
We help you accept the tears. Acknowledge the rage.
 We believe in your right to live without pain. 
We believe in information. Not pity.
 And in straight, open talk about cancer. 
With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with.
 This is no time to pull punches.
 You’re in the fight of your life. ....

There is much to admire here -- and even more to admire in the foundation’s work.

But I found myself repulsed and saddened by the manifesto’s rhetoric. Some of it was the jabby marketing talk. The short sentences. The powerful verbs.

But what really got me is the pernicious limitations of “strength” as a model for living with and through cancer. Surviving this disease is not just a fight, and strength is not the only necessary commodity. As George Demetri, the Harvard sarcoma genius, pointed out somewhere: Lance Armstrong is a remarkable man, but he had perhaps the most chemosensitive type of tumor in existence. This is not to minimize what he went through, and what he accomplished afterward, it’s just to highlight his limitations as a model for the rest of us. And to be fair, Armstrong himself is quite well aware of this.

I want to live strong -- and, in fact, I wear the bracelet to remind myself that I am strong and that others are in solidarity with me, sharing their strength -- but I know that strength isn’t everything. Which is why Bill Stuntz’s thoughts on “living weakly” with stage-4 colon cancer touched me deeply when I read them yesterday. (Another thing that touched me that day of thinking of bracelets, and manifestos, and cyclists: My friend BY sent me a picture after completing his first 100-mile bike ride. He was wearing a bracelet for me. More bacon for you, my friend.)

When you’re not manifesto-ing or writing marketing copy, strength is a slippery concept. Sometimes it means embracing weakness. Here’s Stuntz (and do read the whole thing):

Reduced life expectancy aside, the chief consequence of stage 4 cancers—even more, the chief consequence of their treatment—is weakness, not strength. Cancer and chemotherapy, taken together, are exhausting. Walking up a flight of stairs feels to me like running a couple of miles would feel to a typical out-of-shape 50-year-old, which is what I would be if I were healthy. All mental exercises are several times harder than they used to be...

In short, I can’t live strong, because there isn’t much strength left in me. But I can live weak.

What does that mean?

.... An interesting thing happens when you put aside all the yardsticks and just do what’s possible. Motivation changes. Work is no longer about achievement and reward. It’s more about love and beauty. There is something very powerful—C.S. Lewis might have called it deep magic—about working for love of the work itself: labor becomes less labored, more gift than obligation. I don’t know how much longer I’ll be able to put words on a computer screen—but the ability to do it now, even if only sometimes, is more precious than I can describe. I don’t know whether that makes the work better, but I’m pretty sure it makes me better.

Likewise, there is something inexpressibly lovely—notice that word’s first syllable—about ordinary tasks done for love of the tasks, and done while in the grip of a disease that seems determined to make those tasks impossible. It’s the beauty of a runner’s last marathon, the beauty of an aging athlete’s final game, the game he pours his soul into, as the best artists do in their best work. It may not be lovely to anyone else, and that’s OK by me: cancer is an ugly disease, in every possible way. No wonder people recoil from it. But in the midst of all its life-sapping, soul-destroying ugliness, something amazing can happen: the most ordinary things, the most mundane tasks, take on value and beauty beyond anything I could have imagined. Whether or not anyone else sees it, I see it. And that’s enough.

“Live strong” sounds to me like denial: I’m not strong, and pretending I am can’t change that fact. But I can live weak: do what I can, however small and ordinary, day by day. Some of the living—I wish it were more, but at the same time, I thank God for the “some”—is surprisingly good.

Yes.

Department of More Yes: Here's L., hoisted up from the comments to guest addendum blog:

I love this entry and Bill Stuntz's thoughts. I have long had ambivalent feelings about the "live strong" bracelet, which I wear in hope for you but mostly because of the intense and beautiful solidarity with which they were given to us by T., friend and colleague who passed them out at work for us to wear with knowledge that everyone there was behind us. And truly, what gives them meaning is to sit in a meeting and look around the room and catch a glimpse under a sleeve or right there on a bare wrist -- so many yellow bracelets. They are crazy sunshine (OK, winner's yellow jersey) yellow that doesn't match a thing anyone would wear, and yet there they are, a silent message of hope and caring. But everytime I think of the literal message that I'm wearing I feel my failure. It's a great idea, a Tour de France-winner kind of ideal that I wish I had some kind of kinship with, but maybe "live weak" is as fairly applied to the sufferers and the caregivers as long as we make the effort to see beauty and joy at least sometimes. I've asked myself, if you die, what will I do with this bracelet? Never take it off in remembrance, of both you and a life ethic I'd like to embrace? Have a symbolic and satisfying moment with scissors? Or tuck it in a drawer to come across along with all of the other things that will break my heart? I can't answer that yet. But to the people who wear these ugly rubber bracelets, no longer cool, every day because they love you -- us -- it does not escape my notice. The friends who stay through the long, bloody, tedious battle, this to me is grace and god.

Clearly L. deserves her own blog, but I'm happy to have her with me, here and everywhere.

ASCO, but will you receive?

Online abstracts are now available for the sarcoma presentations scheduled for the American Society of Clinical Oncologists meetings later this month. I spent a few minutes going through them and didn't notice any obviously relevant epithelioid sarcoma stuff buried in the abstracts, but I'm not qualified to make that judgement and it's better to wait until after the meetings to see what gets covered in the medical trade press anyway.

Ariad posted some phase I results for deforolimus that look encouraging for soft-tissue sarcoma generally:

Abstract No:
3509
Citation:
J Clin Oncol 26: 2008 (May 20 suppl; abstr 3509)
Author(s):
M. M. Mita, C. D. Britten, E. Poplin, W. D. Tap, A. Carmona, L. Yonemoto, D. S. Wages, C. L. Bedrosian, E. H. Rubin, A. W. Tolcher
Abstract:
Background: Deforolimus is a non-pro-drug rapamycin analog which specifically and potently inhibits mTOR. In Trial 202 intravenous deforolimus demonstrated notable anti-tumor activity in bone and soft tissue sarcomas. (JCO 2006; 24, 18S: 9505). Oral deforolimus allows greater treatment flexibility and offers potential to treat patients in a maintenance setting. We report preliminary results on oral deforolimus in a comprehensive dose finding study in patients (pts) with refractory malignancies. Methods: The trial was an open label single arm study with dose escalation and a standard 3+3 design. Patients had advanced/metastatic solid tumors refractory to therapy. 7 regimens, all over a 28 day cycle were investigated. Definitions of dose limiting toxicity (DLT; Gr 4 or Gr 3>3 days) were based on CTC criteria. Anti-tumor activity was evaluated by modified RECIST criteria. Patients achieving stable disease (SD) or better lasting for at least 4 cycles of 28 days were classified as achieving clinical benefit response (CBR). Results: 147 pts (85 sarcoma) received deforolimus. Median age was 56 (range 23-84 years); 65 (44%) pts were male. Pts had a median of 2 cytotoxic therapies at entry (range 0-7); 113 (77%) of this population had documented progressing disease at enrollment. The median ECOG score was 1 (range 0-2). The DLT for all regimens was aphthous-ulcer like mouth sores which were reversible by dose reduction or symptomatic therapy. 36 pts achieved CBRs (23 sarcomas). MTD was increased with the addition of a weekly dose holiday interval. CBRs were seen in all regimens and several types of sarcomas and a variety of carcinomas. 24 pts received 40 mg QDx5/wk and in this group 3 of 13 (23%) sarcomas had CBR; 2 (liposarcoma, dendritic cell sarcoma) (15.4%) achieved PR. Pharmacodynamic analysis showed potent inhibition of mTOR. 7 patients remain on therapy after 6-24 cycles. Conclusions: Oral deforolimus has a safety and anti-tumor activity profile consistent with the intravenous form. 40 mg QDx5 each week is an active, well tolerated regimen and has been selected for further evaluation in SUCCEED, a global phase 3 trial of patients with metastatic soft-tissue and bone sarcoma in the maintenance setting.

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.