Choices

On Saturday afternoon, I did something quite extraordinary: sat in bed and listened, really listened, to the entire Metropolitan Opera broadcast of John Adams's amazing "Dr. Atomic." This is his telling of the first atomic test, and of J. Robert Oppenheimer's role, and anguish, about his role in the development of the A-bomb.

I wasn't at all sure that I could listen. I don't like Adams's earlier opera, "Nixon in China," and (like most people, I imagine), I've never sat down and listened to an entire opera broadcast. But "Dr. Atomic" is wonderful, and this was also a trial for something I plan to do a lot of in the months ahead--really listen to music. In fact, as I type, Nate is assembling my new Bose Wave radio/CD changer.

And it also seemed important that I think about the people--from Marie Curie to the citizens of Hiroshima and Nagasaki to, yes, me, who have or will succumb to various kinds of radiation. And to think about choice. Because even though Oppenheimer questioned whether he had a choice about working on the bomb, of course he did. We all do.

Tomorrow I will choose between the only alternatives I have left, as far as the cancer is concerned: begin a course of irinotecan, the only chemo for stomach cancer that I haven't tried, or do nothing. There are many problems with the drug: it's the one that's very likely to cause diahrrea; they could only give me a 50% dose; it has a 15-20% chance of working; even if it worked, it would give me only a few months.... Of course, the alternative--do nothing--likely means dying in very few months.

Tomorrow I will see Dr. Holen nd once again talk about this choice. (We, with Nate, also discussed this last Thursday.) Because I know a lot of you will not want to wait a week to hear my decision, I'll post an update tomorrow afternoon.

As Oppenheimer knew, choice is difficult. But it's also important, and good.

Ironically, my appointment with Dr. Holen is scheduled at the exact time of Barack Obama's inauguration. We all made a very good choice!

Chicago? - and more

For you Madison blog-followers: I will be at A Room of One's Own, 307 W. Johnson Street, at 2 PM Sunday, November 23, reading from and talking about Facing Fear. I plan to reflect on lessons from the recent election and to offer tips on how to cope with anxiety in the face of the current financial crisis. I'll also talk about life as a cancer survivor.

And on that subject, here's the latest from the world of what's next. I saw Dr. Holen last Thursday and learned that 1) the CT scan last Wednesday showed the tumors still growing very slowly (1-3 mm in two months); 2) genetic study shows that I have not one, but two mutations on the genes that express the crucial enzyme that allows people to metabolize irinotecan, the only (I think) drug I haven't had that is FDA approved for stomach cancer. The mutations mean that I don't produce enough enzyme and a full dose of the drug would generate life-threatening diarrhea.

Which leaves us with another possible option. The University of Chicago has a Phase 1 clinic and a lot of trials, overseen by a doctor Holen knows. So the next step is to go to Chicago to be seen by this guy, who will have in his hot little hands a full listing of every treatment I've had for both Hodgkin's and the current cancer, and who can determine whether I'm eligible for any of their studies. CancerConnect, the office here that researches available studies for various cancers, will set up the appointment and call me. I haven't heard anything yet, but I imagine that I will this week. (Because if I don't hear anything in the next day or two, I'll call them.)

Meanwhile, my energy comes and goes. I think it depends on whether the sun is out (right now, it is, which is great), how much rest I've gotten, the phase of the moon, and how successful I am in putting into practice what I know about allaying anxiety. Not as easy as you might think.

Speaking of energy--Saturday night my friend Janet and I went to see the tap dancer Savion Glover. He is unbelievably great. Go see him, if you ever get a chance. In addition to being a fabulous dancer and stage presence, he is one of the most aerobically fit human beings I've ever seen. Some time during the first part of the show I realized I was holding my breath, watching him. But of course, he had to breathe--and it turned out that he could not only breathe while dancing, but also sing.

Friday night we'd seen Sarah Chang, the violinist, play Brahms with the Madison Symphony Orchestra. Another virtuoso performance (Chang, not the MSO). It's truly amazing what humans can do. Individually, and also--as we learned last Tuesday--in community.

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.

Warming Up!

And I mean warming up in two senses: first, a report on the warm Caribbean, before memories of my short and very wonderful vacation last week fade into the next snowstorm (due tomorrow, 5-8 inches, according to the too-trusty weatherman); and second, another little rant on the issue of health insurance.

The Virgin Islands were wonderful, despite the obvious degradation of one of my erstwhile favorite spots on earth, the Baths (batholiths) on Virgin Gorda in the British Virgins. When I first saw them, in the late 1970s, they, and the beach, were pristine and virtually deserted. Ten years later, there were more people, and the water (which collects in shallow pools between the house-size boulders) seemed less clear, though that might have been because of surf roiling the sand. I was a little apprehensive about returning after another 20 years had gone by, but I decided to take a day-long boat tour of the BVI, partly because I love boat rides, and partly because the tour included a snorkeling opportunity at the sea caves on Norman Island. (More about that later.) The Baths were the morning part of the tour, and when we got there, I discovered that in the last year, someone has installed some ladders and boardwalks so that instead of clambering over the boulders or swimming through the deeper pools of water, tourists can pretty easily walk through what used to be a bit of an obstacle course. And now cruise ships visit the Baths! In fact there was a huge group from a cruise ship just ahead of us. Definitely not the experience of a lifetime. I was really glad I'd been there before; this time, I could just people-watch and reflect on the pros and cons of tourism. Because of course I was a tourist, too.

And I did a lot of touristing in only four days: sitting on the beach at the Bolongo Bay resort near my friend Jackie's condo; taking the ferry to St. John's, and then an hour-long city bus trip (for $1!) all the way across the island to a snorkeling site protected from the big rollers coming in on the north shore of the island; wandering through the shops on St. Thomas and watching the cruise ship tourists look for "bargains" (one day there were 5 cruise ships in the harbor, each carrying about 2,000 passengers); and eating the most fabulous fish, wahoo, that had probably been swimming in the ocean only two hours before, at Epernay, an excellent restaurant on St. Thomas.

I had expected to snorkel and see a lot of pretty fish. As it turned out, the St. John's snorkeling spot was mostly dead reef, except for very far out-- but even more problematic, I discovered that although I could deal with the snorkel just fine, I'm not strong enough to swim very far. I was appalled, in fact, at how weak my arms seemed, and how quickly I tired--like in five minutes, swimming off the boat at Norman Island, I realized I'd better turn around and get back on board. Yesterday I went to the health club to swim in the warm water pool (the cold water in the regular lap pool just knocks the breath out of me); only ten lengths, which in that pool are very short--and only two of those lengths crawl--practically did me in. This morning I mentioned that to one of the trainers who teaches warm water classes and she pointed out that anemia and hypothyroidism, both of which I have as a consequence of chemo, really affect strength and stamina. So be it. Even though I couldn't really snorkel, and didn't get to see the fan coral in the sea caves, I was so thrilled to be in the warm Caribbean celebrating three years' survival with stomach cancer, it didn't matter. I did get to swim with a big school of yellow-tailed fish attracted by bread thrown off our tour boat, and in my imagination, I saw tangs and starfish and rays and sharks and all the other pretty and intriguing inhabitants of the deep that I've snorkeled with in the Galapagos, off Hawaii, and in the Caribbean on past trips. The experience reminded me of the movie, "The Diving Bell and the Butterfly," which I saw a month or two ago. If you haven't seen it, definitely do go.

And now for the health insurance rant. This morning, I went to pick up my cello, which spent its vacation having some minor repairs done. My luthier friend had a heart attack last year, and I asked him how he was doing. He told me that his health was stable, but as we talked, I heard his insurance horror story. He was (fortunately, probably) in Cleveland when he had the attack, and so he had surgery and spent at least two weeks at the Cleveland Clinic. He and his wife are self-employed as string instrument builders and repairers. She's older than he is, and eligible for Medicare, so he carries his own insurance, as an individual, through the company (not an HMO) that also insures Madison teachers as a group. The insurance company, once he had the heart attack, did its best to cancel his policy and refused to pay the $200,000 he owed for his treatment in Cleveland! As my friend said, they like to insure two kinds of people: dead ones and well ones. And since he was neither--and wasn't part of a group policy--they singled him out as a bad and much-too-expensive risk. It took many months, the services of a lawyer, and the threat of a law suit to get the insurance company to back down. Imagine going through all that stress while trying to recover from a serious heart attack! Of course, insurance companies count on sick people not having the energy to fight for their rights. And the skyrocketing cost of health care is largely due to increased administrative expenses, including the many very smart (according to my friend) and presumably well-paid insurance company employees who spent months trying to defend their employer against my friend's "unreasonable" claim.

None of the health reform packages that feature private insurance--which is to say, none of the reform packages proposed by current Democratic or Republican presidential candidates--will cure this sort of denial-of-benefits problem. Which is one reason my friend now sports a Canadian flag on his bumper. And why we should all push hard for single-payer, not just "universal," health insurance.

Finally, two announcements. First, a reminder that I will be reading from my memoir on fear at Avol's Bookstore in Madison, Tuesday evening February 19, 7 PM. Y'all come! Second, I've decided to try to update this blog every Monday. That will give those of you who've had trouble subscribing a set time to check for new posts. See you next Monday!

Gratitude

I should be packing for my trip to DC, but I've been thinking all day about writing one last post before I leave both Madison and the blog for the weekend. I'm calling it "gratitude," though I think that word's more than a little over-used these days. Isn't "thanks" good enough anymore? But "thanks" isn't exactly an attitude, and "thankfulness" has a kind of made-up, awkward quality to it. Anyway, here are a few of the things I'm thankful for--all the time, not just in this week of gobbling good food:

The radiation therapy that helped cure my Hodgkin's disease in 1982, and no doubt caused the tumor that grew in my stomach, smack in the middle of the radiation field. It enabled me to live long enough to raise my sons, who were 3 and 6 when the Hodgkin's was diagnosed, and to see them become young men of whom I'm very proud.

The health insurance I was able to get through my former employer, the State of Wisconsin. Also, Medicare-- that "socialized" medicine option for those of us who are disabled or over 65. Everyone should have such options.

My highly-skilled and very compassionate doctors, nurses, and other health care providers.

The nearly three years since I was diagnosed with stomach cancer, and especially the past 15 months, since I learned it had spread to my lungs. Recently, someone looked deeply into my eyes and said, a little too soulfully for my taste, "You're on a journey." I wanted to say, aren't we all? Because of course we are, from the moment we're born. But it's a real gift to have the nature of the journey so impressed on you that you not only want to live fully, consciously, without regret--but actually try to!

The technological advances that make it possible for me to communicate without much of a voice. (Big concession from a would-be Luddite.)

And most important, the friends and family who provide emotional and physical support in whatever way they can: through e-mail, little gifts, dinner invitations, offers of rides, prayers.... Too many ways to enumerate!

May you all have a wonderful Thanksgiving with your friends and loved ones, and may you gather back here next week when I will have some suggestions about how we can create a real discussion in the comments section about realities (illness, dying, death, the benefits of socialized medicine, to name just a few) most of us find hard to face.

How to Subscribe - and photos?

I just disconnected myself from the chemo pump I have to wear for 46 hours after each bi-weekly chemo infusion at the clinic, and to celebrate, I'm returning to the task I tried (unsuccessfully) to accomplish yesterday: posting a little slideshow of recent pictures, mostly of me reading at various venues. I've discovered that unless people actually see or touch me, they don't seem to be certain I exist. This is particularly true of out-of-towners, of course; but even local friends I haven't seen recently seem eager to see me. Well, OK, but I don't know if I've got the technology down. We'll see. You'll see.

Also, some of you have e-mailed to say you don't understand what happens when you click "subscribe." I don't, either, never having subscribed to a blog. Who knows, maybe this post will just show up in your e-mail in-box. Let me know.

And now--ta dum!--some pictures....

Well, maybe I don't exist. The pictures I thought I uploaded don't seem to be here, and I got some sort of "securityToken" saying the action I tried to take couldn't be accomplished. I'll try again, but don't hold your breath!

Beginning to Blog

November 15, 2007 - This seems like a very odd thing for me to be doing. I've tried to avoid blogs, even friends' blogs, even the excellent TomDispatch blog which still arrives by e-mail. Seems to me they just suck up time, and how much time does any of us really have?

But here I am, with vocal folds paralyzed by tumors caused by metastatic stomach cancer, pretty much unable to speak except in a very soft, very whispery, very low voice, and pretty much unable to be heard except in very quiet places, trying to figure out how to communicate with people. So I've added text-messaging on my cell phone and instant messaging on my computer to the e-mail I've done for years. And since I am, after all, a writer--why not try a blog? The trick--since virtually all of my friends and family are over the age of 15--is to get the technically naive and even the technophobes to learn these new tricks.

So I'm using this evening, recovering from my latest chemo infusion, to start a blog. For now, no bells or whistles (or photos, either). But eventually.... who knows what you may find here!

And for those of you who may be curious, the next CT scan is after Thanksgiving, November 29. I'm pretty sure this chemo is working, since I can breathe a lot better than I could before it started. But I'll report the results here.