What Next?

The short answer--I don't know.

The longer answer: Last week I was deemed ineligible for yet another Phase 1 drug trial, this time because the researchers realized I'd had stomach surgery, and they think the drug is likely absorbed through the stomach. (Later I asked my oncologist whether they couldn't have assumed that since I had stomach cancer, I'd had surgery. He said no--apparently when some unfortunate people are diagnosed with the disease, the cancer has already spread so much that it's pointless to remove the primary tumor.)

Over the past three-plus years I've been deemed ineligible for four Phase 1 trials, if I remember the number correctly: one because I'd had too much radiation (for Hodgkin's disease, 28 years ago); one because I'd had too many kinds of chemo, including the treatment that cured my Hodgkin's; one because my tumors were too small for the researchers to follow with their experimental technology; and one because I have a tiny stomach. This does not make me optimistic that I will suddenly find a trial for which I am eligible. And in any case, these Phase 1 trials are generally designed to test for toxicity and find the maximum tolerable dose of drugs that have only been shown to be active against cancer in some lab animals. They are far from proven effective in humans.

On Thursday, Jed (who's in town for three weeks working on the Obama campaign) and I went to see Dr. Holen, my oncologist, and talk about options. One--which we'd all like to avoid as long as possible--is going back on oxalyplatin, which worked against my cancer, but which also caused neuropathy in both my hands and feet. The neuropathy has begun to resolve, but it would come back quickly if I went back on the drug. Neuropathy sounds merely unpleasant--and it is that--but it can also be very dangerous. It destroys balance, and makes falling much more likely, and it's not something that one wants to invite into one's life.

Another possibility is a drug called irinotecan. In order to metabolize this drug, one needs a particular enzyme, which some people have and some don't. The vampires have collected a bit of my blood and sent it off to be analyzed for this enzyme; I gather it takes a couple of weeks for the results to come back.

I asked Dr. Holen about Phase 1 studies at places other than UW. (The problem with UW is that to be fair to all potential study participants, they will only let you sign up for one study at a time. It takes them a week to wash me out of each study. They have something like 18 studies going, and I figure at this rate it would be February or March before they determined I was ineligible for all of them!) He gave me the number for Cancer Connect, which will do a search for studies elsewhere--in specific cities--for which I might be eligible. But the disadvantage of this approach is that any study would require that I get all treatments, blood tests, and related medical care at the study site. This might be feasible in Chicago; it would be onerous but not impossible to drive to Chicago every week, if necessary. And slightly less feasible at Mayo; Rochester MN is considerably farther from Madison than Chicago, but not out of the question.

For other places, though, I'm inclined to say that the questionable benefits of a Phase 1 study are not worth the cost of picking up my life and moving it to, say, LA or DC or SF where I have family and friends (but would still have to rent an apartment), much less San Antonio, where there are apparently the most studies, but where I know no one. And then there's always the question of whether I'd be found eligible for any of the available studies, anywhere.

Meanwhile, although I don't want to sound like Voltaire's Dr. Pangloss ("all's for the best in this best of all possible worlds"), there's a lot for which I'm grateful. Most patients with metastatic stomach cancer live for a much shorter time than I have. I told Dr. Holen that--depending on the day--I feel as though I am (crawling on all fours) (balancing on a tightrope) (dancing) out on the long tail of the survival curve. (Today, it's dancing.) This is a good, even exciting place to be.

When I was at the clinic waiting for my blood to be drawn, I could not help but hear a cell phone conversation that also made me feel very fortunate. A young woman, in her early twenties, I'd guess, and her parents were sitting in the waiting room. The father made a call and was telling the person on the other end that all the news was good: the cancer was only in one breast, there would be more tests, but things were positive. At which point the young woman said "Give me the phone," and told the person on the other end, "We didn't hear one bit of good news. It's all bad." She went on to explain that her cancer was estrogen receptive and she had to decide between having her ovaries removed or, as she put it, "winging it" and hoping that the cancer would not recur. She was clearly angry that she might be unable to have children, and although she was also still able to make ironic jokes, I felt very sorry for her, and very glad that my Hodgkin's treatment (which put me into menopause when I was 37) occurred after I already had two sons.

One last thing: last night, Jed and I went to see "Trumbo," the documentary about screenwriter Dalton Trumbo, who was imprisoned for nearly a year and blacklisted during the McCarthy era (1951-1960, in his case). I thought the movie was really powerful and effective, but I was also struck by something Trumbo said near the end. The blacklisting wreaked havoc on his life and his family's--and those of other blacklisted people, in the movie industry and in other professions. Some of those people, shamed and unable to support their families, committed suicide. It's clear that in ways most of us will never experience, the daily lives of all these people were out of their control. But whatever happened, Trumbo advised his friends, don't forget to have fun.

The oak tree outside my study window has turned a spectacular red, and this morning, as Jed and I drove to the gym, we could see snowflakes on the windshield. Later this week, we'll head into the countryside to see the last of the fall color.