Embracing uncertainty

I had a scan yesterday, and the news was good -- mostly. (It would be really nice to have unambiguously positive results from a study, but it's just not in the cards.) My lymph nodes are all the same size, there are no new mets, my disease is technically stable. The pictures and a whole lot of my blood is now being shipped to Ariad, where they will review the information and determine if I am eligible to participate in the deforolimus study. If I get the OK, I'll probably start on the drug or placebo in late September or early October, just after my birthday.

So why don't I feel exultant? Well, I've been wiped out with another mysterious fever for the last couple of days, and in the interlude yesterday between the scan and the doctor's visit, I managed to put my iPod through the wash. (It looks great, but no longer works.) Also, the collapsed lung that had completely healed last month is back in a big way, and it may require intervention at some point. Fortunately, my nightmarish pleurodesis is still somewhat in effect, adhering the lung to the pleura at a couple points, so hopefully the lung won't completely fall down and require immediate action. The scan also revealed several small, hollow cysts on the surface of the lung, which my doctor and the pulmonologist she consulted believe are the source of my collapsed lungs. What's the source of the cysts? We don't know, but some sort of respiratory infection is a possibility. The tiny nodule they found in my last study, incidentally, occupies a piece of real estate that once contained one of these cysts, so they are now more confident that the nodule is not a malignancy. 

As I'm reading this, it's sounding pretty good, so let me try to explain why I'm so anxious. Part of the anxiety is just a learned response; I've gotten a lot of bad news over the last two years. Part of it is the fear of any cancer patient that something is lurking invisibly deep within the body, biding its time, lurking and waiting to rear up and do harm. Part of it is that I know of several epithelioid sarcoma patients who are dealing with pneumothoraces, some with visible lung mets, some without. (Have you had your lungs collapse four or five times in six months? No? Then you can see why I'm not convinced this has nothing to do with the cancer.) 

It comes down to the uncertainty, I guess. One of my mantras throughout this illness has been that we need to learn how to embrace uncertainty, or at least live with it, because the only certainties we're going to get are going to be bad. That's true, but it's a hard way to live. I'm trying, though.

David Foster Wallace

I found out that David Foster Wallace killed himself last night, and the news made me sick. My relatively brief and shallow acquaintance with his writing changed permanently how I see John McCain, right-wing talk radio, the nervous system of a lobster, professional tennis, television commercials, cruise ships, irony, grammar and literary fads. (I wonder what the hell might happen if I ever read his fiction seriously.) Years ago, driving the car, I chanced upon an interview that Wallace did with Michael Silverblatt, and I had to pull over. His erudition, passion and richly timbered voice captivated me. Here's a little bit of Wallace from another interview:

I had a teacher I liked who used to say good fiction’s job was to comfort the disturbed and disturb the comfortable. I guess a big part of serious fiction’s purpose is to give the reader, who like all of us is sort of marooned in her own skull, to give her imaginative access to other selves. Since an ineluctable part of being a human self is suffering, part of what we humans come to art for is an experience of suffering, necessarily a vicarious experience, more like a sort of “generalization” of suffering. Does this make sense? We all suffer alone in the real world; true empathy’s impossible. But if a piece of fiction can allow us imaginatively to identify with a character’s pain, we might then also more easily conceive of others identifying with our own. This is nourishing, redemptive; we become less alone inside. It might just be that simple.

I was also moved by his commencement address at Kenyon College (I'm a fan of the genre), some of which I'll quote below:

And I submit that this is what the real, no bullshit value of your liberal arts education is supposed to be about: how to keep from going through your comfortable, prosperous, respectable adult life dead, unconscious, a slave to your head and to your natural default setting of being uniquely, completely, imperially alone day in and day out. ...

If I weren't so tired and depressed by the whole thing, I'd go on and on. Maybe I will later. In the meantime, you can find links to some of Wallace's journalism here. 

'Survivors' by Errol Morris

Worth watching:

Donne and death

A nurse unexpectedly loses a patient:

What can one do? Go home, love your children, try not to bicker, eat well, walk in the rain, feel the sun on your face and laugh loud and often, as much as possible, and especially at yourself. Because the only antidote to death is not poetry, or drama, or miracle drugs, or a roomful of technical expertise and good intentions. The antidote to death is life.

Shaggy dog story

The dog cancer took from me is shaggy, lovable and weighs 130 pounds. L. will kill me for saying it, but she was a lousy dog by any conventional definition -- but lousy in grand and amusing ways, the kind of bad dog that someone might write a best-selling memoir about.

Her behavior was bad, but her heart was good. She would follow us around the house, lying down with a sigh and a thud when we settled. Her head was heavy and noble, and she would lay it on my feet when I sat on the couch. When she desired petting, she would sidle up in front of someone and present her mighty expanse for a rub, leaning into her human by ever greater degrees, until they staggered back or braced themselves against something solid enough to take the weight, something like an anvil. She was a fierce, if overzealous, protector of her home and family; woe to the UPS man approaching the door or the house cantering down the road. Abby was always ready defend our home against shipments of Amazon books or potentially rabid equines.

Her appetite was ravenous, even if dog food was often too pedestrian for her tastes. Her great size and athletic ability meant that nothing on the counters was safe from her predation; she mastered the trick of setting her feet, rising slowly and silently like some great crane or drawbridge, and snatching a peanut butter jar, baguette or small child from the countertop. With her prize tucked within her capacious jaws, she would drop to the floor with a snap, then stealthily but quickly run to her dog bed, or “office” as I called it, which would at times be littered with plastic wrap, ceramic bowls, even the occasional pilfered chef’s knife. To this day, almost two years since she’s been gone, I still find myself setting my cooking mise en place on top of the refrigerator -- but not on the edge, because Abby could occasionally manage to snare things from the fridgetop. This was a big dog.

It was the refrigerator, ultimately, that proved her undoing in our home. Before I was diagnosed with epithelioid sarcoma, I spent about seven months undergoing a succession of exploratory surgeries and the like while my tumors grew ever-more symptomatic. By the time I was diagnosed with the cancer and began chemotherapy, I had already been staggered by the illness for some time. With my health troubles, and with two kids four and under in the house, Abby wasn’t getting walked and her behavior began to decline precipitously. She finally learned how to open the refrigerator -- a jab of her long nose into the seals. We made a few feeble attempts to stack furniture in front of the door (she moved it out of the way easily), but it was clear that we needed to focus on our kids and my treatment, not on cleaning up the carnage that results when a dog learns to open the door to culinary paradise at will. In one of the most loving things anyone has done for us, a friend drove her nearly 300 miles to a Newfoundland rescue group, which exercised and rehabilitated her and found her a great adoptive home.

Now I find myself increasingly longing for another dog, and resenting the uncertainty that shrouds my present and future. I could walk and groom a dog now -- but what about six months from now? (Hell, two months from now?) What if I get sicker? I can’t summon any logic to support the proposition that getting a dog now makes sense. But I want one anyway.

Cocktail hour

Greg's comment below reminded me of this Wall Street Journal article from last year. It emphasizes childhood tumors, but also features some adult cancer patients who are pursuing a "cocktail" approach to chemotherapy.

Neil Hutchison, 45, isn't a doctor. A defense-contractor recruiter, he's part of a growing underground pushing the edge of medicine to find combinations of anticancer agents to save themselves or loved ones. Many of the medicines Sam takes haven't been tested in clinical trials for his disease. Some are meant for other illnesses; others are still in animal testing for safety and efficacy. But the fact is that Sam, who suffers a rare and often-deadly cancer of the nerves, is otherwise almost certain to die. Hence Mr. Hutchinson's decision, as he puts it, to play "lab rat" with his son.

...

But Mr. Hutchison is pursuing what many researchers believe is the most promising approach for curing or curbing cancer, which killed about 565,000 people in the U.S. last year. Because cancer seems to eventually overcome most individual therapies, researchers for a decade have advocated using combinations of new, targeted therapies on the theory that the best hope lies in cutting off all known avenues for the cancer to grow.

Trials of such methods have been slow to gain traction. "Everyone knows the future of cancer treatment lies in cancer cocktails," says David Kessler, dean of the school of medicine at the University of California, San Francisco. Dr. Kessler says the Food and Drug Administration needs to undertake an effort similar to one it did when he was commissioner in the 1990s, when it amended the drug-approval process to speed approval of AIDS-drug combinations. "What's missing today is leadership."

You gotta fight

Sick Guy, Sr. passed on this Steve Lopez column about the importance of second opinions. 

Lopez's sister's oncologist recommended whole-brain radiation after ovarian cancer metastasized, a treatment that has immediate and often severe side-effects. But after the writer described the case to first one, then several, experts no one thought whole-brain radiation was indicated. Lopez's sister got a workup and formal second opinion at a top facility, which recommended more targeted "gamma knife" radiation. Whole-brain radiation was barely considered. Whether out of misplaced personal pride, the limitations of your health plan, or the limitations of in-network facilities (which in this case did not include a gamma knife facility), docs don't always make the right call.

Of course, this story suffers from the Teddy Kennedy problem -- how am I going to get several experts on the phone if I'm not a senator or Pulitzer Prize-winner? You probably aren't. But supportive communities like the Sarcoma Alliance bulletin board offer access to quite a bit of knowledge, and most insurance companies and doctors will support at least one formal second opinion.

Rethinking the war on cancer

One of the many disconcerting things about getting cancer -- or having a friend or loved one get it -- is the sudden undermining of your sense of progress. (Literally: I tend to think of "progress" as a good thing, and during one of my early doctor's visit I was pleased when the fellow said something about progress after a CT scan. She meant, of course, that my disease was advancing.) For all the new understanding of the genome, the new smart drugs, the new collaborative research centers and the advances in basic biology made every day, the outlook for many people with metastatic cancer isn't appreciably better than it was 30 years ago. 

In an excellent, if depressing article, Newsweek tries to offer a bracing corrective to the usual puff coverage of new advances, drugs and, er, progress. The idea isn't so much to knock down hope as it it is to suggest that we need a change in how cancer research is approached and funded. The article is here.

A corrective:

She has seen real progress in her 19 years in practice, but the upbeat focus on cancer survivors, cancer breakthroughs and miracle drugs bothers her. "The metaphor of fighting cancer implies the possibility of winning," she said after seeing the last of that day's patients one afternoon. "But some people are just not going to be cured. We've made tremendous strides against some cancers, but on others we're stuck, and even our successes buy some people only a little more time before they die of cancer anyway." She pauses, musing on how the uplifting stories and statistics—death rates from female breast cancer have fallen steadily since 1990; fecal occult blood testing and colonoscopy have helped avert some 80,000 deaths from colorectal cancer since 1990—can send the wrong message.

And some precedent for possible new approaches...

At the same time that molecular biologists were taking the glamorous, "look for the cool molecular pathway," cojones-fueled approach to seeking a cure, pediatric oncologists took a different path. Pediatric cancer had long been a death sentence: in Farber's day, children with leukemia rarely survived more than three months. (President Bush's sister Robin died of the disease in 1953; she was 3.) Fast-forward to 2008: 80 percent of children with cancer survive well into adulthood.

To achieve that success, pediatric oncologists collaborated to such a degree that at times 80 percent of the children with a particular cancer were enrolled in a clinical trial testing a new therapy. In adults, it has long been less than 1 percent. The researchers focused hardly at all on discovering new molecular pathways and new drugs. Instead, they threw everything into the existing medicine chest at the problem, tinkering with drug doses and combinations and sequencing and timing. "We were learning how to better use the drugs we had," says pediatric oncologist Lisa Diller of Dana-Farber Cancer Institute and Children's Hospital Boston. By 1994, combinations of four drugs kept 75 percent of childhood leukemia patients—and 95 percent of those enrolled in a study—cancer-free. Childhood brain cancer has been harder to tame, but while 10 percent of kids survived it in the 1970s, today 45 percent do—a greater improvement than in most adult cancers. (To be sure, some scientists who work on adult cancers are sick of hearing about the noble cooperation of their pediatric colleagues. Childhood cancers, especially leukemias, are simpler cancers, they say, often characterized by a single mutation, and that's why the cure rate has soared. Neutral observers say it's a little of both: pediatric-cancer scientists really did approach the problem in a novel, practical way, but their enemy is less wily than most adult cancers.)

ES Facebook group launched

I mention this mainly for completeness, since I'm not myself a Facebook member, but someone has launched a "causes" page for epitheloid sarcoma on the social-networking site. The gateway is here. It seems like a worthy venture, but one line from the page gave me pause. Caroline, the page owner, writes, "It is proven that it does not respond to chemotherapy." 

This is verifiably false; this paper doesn't quite get to core of the issue, since it's in vitro, but it shows that ES cells are killed by paclitaxel, aka Taxol (the standard second-line treatment for ES, and many other sarcomas, is now a combination of gemcitabine and docetaxel, another taxane). It is true that ES is highly chemo resistant, and it may be true that chemotherapy does not have a proven overall survival benefit for ES. The jury is still out, unfortunately. But based on my response to chemo and the anecdotal accounts of others, I'm convinced that at the very least chemo can increase progression free survival. I'm puzzled as to why more than a few people dealing with ES want to say that chemo is useless. The situation is bad enough -- let's not make it any worse with overly sweeping statements about the disease's drug resistance.

Studying loss

An arresting (but difficult to read) article from the Los Angeles Times about a college course in which students visit autopsy rooms, hospices and convicted murders to learn about death and loss. College students study death to learn the meaning of life:

For the last decade, Bowe has led her classes of 30 students into the refrigerated tombs of bodies stacked bunk-bed-style in the morgue and into hospice bedrooms, glowing from television screens, occupied by the sickly and soon-to-die. She guides them through the barbed-wire fences of Northern New Jersey State Penitentiary, past the outdoor recreation kennels where gang members sweat and swear, to a law library where they sit down with murderers.

Her students are from suburban small towns and inner cities. They enroll in Bowe's class because they are curious about her unusual field trips. But something more powerful also draws them here: a need to know how we die, and why. What happens to our bodies, and is there such a thing as the soul?