Anticlimax

So last night it was time to change the dressing covering the incision where they stuck the tube that removed the air from my chest and allowed my lung to reinflate itself. I'd rate myself as middling on the sensitivity-to-gore scale -- a PG-13 guy in an R-rated world. My blood and I just don't get along any more. So it was at the last permissible hour, and with a good deal of trepidation, that I peeled off my shirt and began working on the thick layers of white tape that swathed my thorax like an umpire's chest protector. 

At first, I'm nervous. Then, trying to work the maze off centimeter by centimeter, I start getting pissed off. The stuff has practically bonded to my skin, and there's a lot of it; yanking on it just painfully pulls my gristle into a hump, so I have to get in underneath it with the fingers of my off hand and work it to the side so that the other hand's pulling removes tape instead of flesh. This takes a long time and manages to be simultaneously painful and tedious. When I've finally freed the multiple straps holding down the thick wad of gauze, I yank the whole thing off and look up at the mirror, worried about what I'll see.

I look, then look again. There is a crusty smear of dried blood, a small yellowing bruise, a few crisscrossing straps of lobster-red skin, and... nothing. I'm standing there with a couple of squares of yellow petroleum gauze stuff, trying to figure out where to slap it down, and the only plausible candidate is this spider bite, a sorry looking little red scab. This is it? This is the sum total of two procedures, six milligrams of morphine and, initially anyway, a considerable amount of discomfort. Well, yes. I apply the jelly and gauze and fasten it all down with as little tape as seems prudent.

Sarcoma and Smart Drugs

This article from Harvard Magazine tells the story of a man with a particularly ugly form of sarcoma called GIST and his treatment with so-called "smart drugs," agents that destroy tumors by targeting the specific proteins in malignant cells, rather than just mowing down everything growing a la conventional chemotherapy. The patient happens upon the right man, Dana-Farber's Dr. George Demetri, at the right time, just as trials of the smart drug Gleevec are primed to begin.

A caveat on the piece is that it is written by a former president of Dana-Farber, so it's not objective. It doesn't end well, either. But it melds a moving human story with insight into the science behind smart drugs and some of the medical and ethical issues presented by drug trials. It also briefly discusses dasatinib, a Gleevec-like agent that is currently being assessed for action against epithelioid sarcoma in a new study. I'll have more on that soon.

A note on studies

Anybody can type a few keywords into PubMed and have great fun worrying oneself and annoying one's doctor. On the positive side, even if you can't understand the bulk of what is written, knowing about a potential treatment's possible effects and side-effects can make it easier to make a difficult choice.

I am not an expert at evaluating studies, but here are a few tips:

1) Check the sample. More, obviously, is better, though most soft-tissue sarcoma studies involve small numbers of patients due to the rarity of the disease. Remember that in a small sample, even one additional response can skew the number in the absract dramatically. I tend also to be biased toward reports from major American and European cancer centers, as well as those published in big journals like Cancer.

2) Read -- OK, skim -- the whole thing. Most libraries, especially at universities, can access medical papers via their institutional subscriptions. (You can, of course, also find many on paper.) The biggest reason to do this is that soft-tissue sarcomas, which come in at least 66 very different flavors, are quite a diverse group, and what is applicable to one might not be applicable to yours. Usually there's a chart that breaks down the sample by disease and response where you can look for what happened to patients with epithelioid sarcoma, rhabdomyosarcoma, or whatever.

3) Check the date. Both when the study was published and when the patients were actually enrolled and treated. This is particularly crucial for so-called prognostic studies that tell you how other people with your disease did. To gather a statistically valid series of outcomes, the researchers may have to aggregate records going back decades. The progress of cancer treatments is overrated in many ways, but there's no point in worrying yourself sick about what happened to a small group of people 10 or 20 years ago in another country. Things have gotten better.

4) Bring your doctor in. Print at least the abstract, ideally the whole text, of anything that particularly worries or excites you. Then get a copy to your doc so she can help you evaluate it. It's safe to assume that your doctor is quite familiar with the clinical literature (if you don't feel this way, find another oncologist), so it's not like you're delivering news flashes, but sarcoma is rare enough that she might not have seen everything, especially if she spends most of her time treating other illnesses. I would use this tactic sparingly, out of respect for your doctor's time and expertise, but I think most physicians would rather spend a little time helping out occasionally rather than having you base decisions on information that they don't know you have, information that may not be fully relevant or up-to-date.

I'll add to this as I gather more thoughts that might seem helpful.

Temodar

My doctor thinks temodar, or temozolomide, a relatively well-tolerated oral chemotherapy agent, is the next way to go. I'm not sure it's effective enough. I'm all for minimizing side-effects, but if that means minimizing the effect also, I'm just not down. First paper I picked up on PubMed is reasonably encouraging:

A phase II trial of temozolomide as a 6-week, continuous, oral schedule in patients with advanced soft tissue sarcoma: a study by the Spanish Group for Research on Sarcomas. The upshot from the abstract is "RESULTS: Among 45 eligible patients in the STS arm, there were 7 partial responses, for an overall response rate of 15.5% (95% confidence interval [95% CI], 5-26%). Responses were seen in 5 of 11 patients who had gynecologic leiomyosarcoma. The median response duration was 12.5 months (range, 3.9-58.0 mos). In 4 patients, response lasted > 1 year, and 2 of those patients remained progression free for > 3 years. The median time to progression was 2.2 months (95% CI, 1.8-2.5 mos), and the median overall survival was 8.1 months (95% CI, 5.6-10.6 mos). Progression-free survival rates at 3 months and 6 months were 39.5% and 26%, respectively. In the GIST arm, no responses were noted."

This is the highest response-rate I've seen for temodar in a study, but the series here, while reasonably sized, was heavily tilted toward uterine leiomyosarcoma, which temodar is an established decent drug for.

This study, from MD Anderson, found a 5 percent response rate in people with non-GIST soft-tissue sarcoma.

Another Phase 2 had about an 8 percent response rate; the responders all had some sort of leiomyosarcoma.

This 1999 European phase 2 is quite discouraging. Just one response (3.3 percent).

What's left to check? Temozolomide is often used with irinotecan. I'll try to find some studies on that soon. It also has potential as a radiosensitizer. The full text of this paper Outpatient chemotherapy plus radiotherapy in sarcomas: improving cancer control with radiosensitizing agents could be very interesting.

More soon.

It's not just the waiting...

Despite my current readership of two, I was feeling embarrassed about the melodrama of counting down the hours until my PET scan. Obviously, it's not the scan -- it's the result. Then my doctor called. It was a few hours after the test, and I had brought my son home from school. When I recognized the doctor's voice on the phone -- she never calls -- for a brief, lurching moment I was exhilarated. She had called to spare me an extra day of waiting for the good results. How considerate of her! Instead, she had two pieces of information for me: the first was that one of my lungs had collapsed, the second was that some lymph nodes behind my belly (retroperitoneal, a word impossible to spell, pronounce or, for me, comprehend) had begun swelling. My cancer has spread. It's not melodrama if it's your life.

Cookies Are Good

The track of these entries, obviously, roughly captures the wandering of my mind as I face the test. But it's not all that.

The baker David Lebovitz published a recipe for chocolate chip cookies years ago that revolutionized the genre for me. He puts in a freakish amount of nuts and good chocolate, and he recommends rolling the dough, wrapping it tightly and freezing it. To bake the cookies, you unwrap the log, slice a few sections and bake them frozen. What this has meant to our family is that we can almost always eat freshly baked cookies. Starting frozen gives them better loft and shape -- no oozing all over the sheet -- and a magnificent crispness outside balanced by a liquidy melted center. The excellent blog Smitten Kitchen explains all here.

My own thoughts for better cookies, whatever your recipe: Use better chocolate, preferably chunks, not chips. Add salt to the dough. Toast your nuts (I rank pecans over walnuts, but toast either.) When in doubt, take them out. Underbaked cookies are better than tough dry ones, and they will finish baking (some) on the cookie sheet or rack. Try the frozen log thing. It will work with any recipe, including Tollhouse.

Can you tell I'm fasting?

Illness as More than Metaphor

I wanted to link to David Rieff's remarkable New York Times Magazine article about his mother Susan Sontag's third and final battle with cancer. It's a biographical narrative, but also an investigation. How do oncologists do what they do? Why do they what to do? Sontag's capacity to endure pain, but her fierce refusal to accept her own mortality, haunts me.

I've often thought about these lines, as I face choices and my doctors attempt (or not) to guide me through them:

Dr. Stephen Nimer, my mother's principal doctor, heads the division of hematologic oncology at Memorial Sloan-Kettering and is also one of America's foremost researchers in the fundamental biology of leukemia. As he explained it to me: "The fact is that people are never as educated as the doctor. You have to figure out something about the patient" -- by which he meant something that takes both patient and physician beyond the profound, frustrating and often infantilizing asymmetry between the patient's ability to comprehend the choices to be made and the doctor's.

Still, the doctor's task here is not impossible. As Nimer put it: "There are risk takers and risk-averse. There are those who say, you know: 'I'm 70 years old. If I get another four or five months, that would be fine.' Others say, 'You do everything you can to save my life.' Then it's easy. You can go straight into a discussion of what a patient wants."

For Nimer, as for Jerome Groopman, the ethical challenge, vital for a doctor to recognize and impossible (and ethically undesirable) to deal with formulaically, comes not with the 30 percent of patients Nimer estimates know for certain whether they want aggressive treatment or not, but with the "undecided" 70 percent in the middle. As Nimer told me somewhat ruefully, the doctor's power to influence these patients, one way or the other, is virtually complete. "There are ways to say things," he said. "'This is your only hope.' Or you could say, 'Some doctors will say it's your only hope, but it has a 20 times better chance of harming you than helping you.' So I'm pretty confident I can persuade people." Groopman, in his clinical practice with patients like my mother, patients for whom, statistically, the prognosis is terrible, at times begins by saying, "There is a very small chance, but it comes with tremendous cost."

At some point, I'll share observations about how my various doctors have framed issues for me in both helpful and patronizing ways.

Bonus: My search for the original article turned up this Jan. 6, 2008 Los Angeles Times book review by Thomas Lynch. Rieff expanded his magazine article into a recently published book, Swimming in a Sea of Death. The full review is here (registration possibly required). Lynch's reaction to these lines from Rieff struck me:

"For my mother, whose pleasure in her own body -- never secure -- had been irretrievably wrecked by her breast cancer surgery, consciousness was finally all that mattered. I believe that if she had been offered the possibility of an immortality that consisted of nothing but consciousness, that is, of continuing indefinitely to know what was going on, even if it was the science-fiction immortality of the disembodied head, she would have accepted it with relief and gratitude -- perhaps even with appetite."

Just such an immortality of disembodied consciousness -- "a soul," some call it -- is the consolation of believers.

'A Mutinous Group of Cells on a Greedy, Destructive Path'

The headline isn't short or graceful, but the piece is. Natalie Angier on metastases.

Where I'm Calling From

Please forgive the drama below. I'm trying to find some way to understand and encapsulate what I'm going through now as I approach another scary test. I've had a lot of practice waiting for results. But practice doesn't help. It is getting harder rather than easier to walk into the office, wait for the door to open, and try to read the doctor's face before she tells me the findings of the latest biopsyscanbloodtestMRI. She understands this and reveals the news quickly, as she was trained, usually before she even fully sits down, but I can still picture the lines on her forehead.

*

It's not all going to be like my first post. I'm not normally this overblown, even with cancer, and I don't want this space to just be about me ranting about how horrible and weird being sick is. I'm hoping to share some thoughts about epithelioid sarcoma that have helped me, in the hope that they may prove useful to other patients and their families. I want to link to some information about the disease that may be hard to find for people unfamiliar with PubMed. I'm hoping to tell some stories and make some observations about cancer that may be useful or interesting. I'll probably crack a few jokes. I also plan to eventually back up and tell some of the story about how I got to where I am right now, waiting for another damn test.

The Best Time

I am writing this from a warm place in a small town in a cold state. 

It is a little bit more than 16 months after I was diagnosed with a rare cancer that will more than likely kill me. It is also little bit less than two hours until I begin fasting to prepare for a PET scan that will take place about 14 hours from now. The scan will, hopefully, tell us that the chemotherapy and radiation I have already endured have worked well enough to make surgery to remove my tumors possible. Or it may reveal that the cancer is elsewhere, that it has found a convivial home in my lungs, or liver.

*

PET stands for positive emission tomography, for what it's worth. In this part of the cold state, the equipment is located at a small, underused and depressing Catholic hospital. After checking in, you are led through a series of corridors out to what is essentially a loading dock. A semi-trailer is backed up to the dock, which is separated from the hospital proper with a series of doors reminiscent of a movie airlock. There are radiation signs everywhere. You are lead to an odd vinyl armchair in a tiny two-person capsule, where a technician opens an IV in your arm. An assistant removes something -- a vial of radioactive sugar -- from a machine that has a thick door like a bank vault. They inject the sugar. Then you wait in the dark and stare at the ceiling and listen to the faint traffic from outside and watch the foot of the silent, sleeping man next to you twitch occasionally. You cannot see his face. 

If I sound portentous, forgive me. The damn scan is portentous. I'll tell you the rest -- and I'll tell it for real, and in the first person -- tomorrow. I have only had this test once, not long after my diagnosis, and I mostly remember how it felt, not how it looked. I wasn't writing then.

It would have seemed impossible to me 16 months ago, but the stakes are higher for this test, the one that will begin 14 hours from now. After nine months of chemotherapy and a huge dose of radiation, and then seven months of often-fraught rest, I am finally beginning to feel human again. The treatments battered my tumors -- this is why I am still alive -- but it did not, we know, kill them. The question now, with this test, will be: Where are they? Tumors are hungry. What they do is grow. If the scanner detects sugar being devoured outside the box of my pelvis, where the cancer began and spread to my lymph nodes before the radiation and poison beat it back, I'm doomed. If the monster is still in the box, I have some options. Bad ones, to be sure, but options all the same.

*

A while ago I began finding occasions to quote an aphorism to my wife and kids. "The best time to have planted an oak tree is 25 years ago. The second best time is today." I don't usually go around quoting shallow bits of advice (I normally make up my own shallow observations, thank you), but this one became a family joke, enough so that I can summon it with just the first three words, delivered with orotund self-mockery: "The best time..." I wanted to start writing after the first biopsy, then the second, then the CT scan and the PET scan and the MRI, after the first chemo and then the second, after all of the many hospitalizations and the dozens of radiation treatments and now, tenuously, after beginning to feel like a diminished but somewhat whole version of myself. 

I did write morose letters for my children, and occasionally funny e-mails to my friends, but I didn't keep a journal of my illness. But the agony of facing this test makes me want to put something down. In some ways, it feels beside the point. It's so late; so much has already happened. 

But I'm just going to go ahead and plant the damn tree today.