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.

Stamina

Facing Fear is (almost) here! (Yes, I know that rhymes.)

The books didn't arrive in time for yesterday's event at the Wisconsin Book Festival, but they will be shipped from the printer this Friday. You can pre-order now on Amazon--just search for "Strasser Facing Fear"--or, if you'd like a signed copy, send me a check for $20 and I'll mail one to you. My address is 511 Sheldon Street, Madison 53711. I imagine that local (Madison) bookstores will have copies in a couple of weeks. Those of you who live elsewhere can order copies through your favorite bookseller.

Whew. Seeing this book through to publication has taken stamina, for sure. I started work on it in the late fall of 2004, after Bush's reelection campaign, and wrote the first draft in the spring and summer of 2005, while I was recovering from surgery and undergoing the first rounds of chemotherapy for stomach cancer. Without the friendly urging and deadlines set by my writing buddy Anne-Marie Cusac (who was working on her own book on the history of punishment in America, due out in the spring from Yale University Press), Facing Fear might never have happened.

And then there was the revising, the search for a publisher, the anxiety about whether I would live long enough to see the book into print.... Not to mention the question of how someone without a speaking voice or the ability to travel very far for very long can schedule and perform the readings essential to marketing a book these days. (For my memoir, Black Eye: Escaping a Marriage, Writing a Life, I organized one- or two-week book tours to both the east and west coasts.) Any of you who have marketing ideas for Facing Fear, please send them along! And if you can somehow help by spreading the word via blogs, email, Facebook, or anything else, bless you!

I hadn't planned to write so much about what it took to get a book out into the world, but yesterday evening, thanks to introductions by Anne-Marie, I had the pleasure and honor of meeting Reginald Gibbons, a poet who teaches at Northwestern University. Gibbons' latest collection of poetry, Creatures of a Day, has just been named a finalist for the National Book Award. Like an earlier book, this one was published by Louisiana State University Press--but Gibbons has had to seek out a different publisher for each of his other five poetry collections. (He's also the author of a terrific novel, Sweetbitter, and many scholarly works.) And even after a distinguished career as a poet, Gibbons spent five or six years and fielded rejections from eight or nine publishers before finding a home for Creatures of a Day.

I asked him what he told his students about publishing their work, given this experience of the brutal reality of the American poetry scene. He said that he quoted his own teacher, Stanley Kunitz, who died in 2006 at the age of 100, after a 76-year career as an active and widely-published poet. What it takes to be a published poet, Kunitz said, is "stamina."

Actually, I think that's what it takes to be anything. It takes stamina to be alive. As someone has said, the key to success in life is showing up. (I don't have the stamina to chase down the source of this bit of wisdom.)

So although this post may seem to be about writing, or poetry, or publishing, it really is a metaphor. As I head farther and farther out on the tail of the gastric cancer survivorship distribution, some days I feel as though I'm crawling on all fours, hanging on for dear life; other days (the really good days, like today) I feel as though I'm balancing gracefully on a high wire without a net. But always, it's about showing up. About stamina--mental and, as much as possible, physical.

Thanks, Reg, for the reminder.

Anxiety

To all you Madison blog-readers: Please join me at the Wisconsin Book Festival on Sunday afternoon October 19, 4 PM, main (downtown) public library. I will be reading from Facing Fear: Meditations on Cancer and Politics, Courage and Hope, and will be joined by my publisher, Richard Quinney, and Carol Bjerke, the artist whose image of a rowboat is on the cover of my book. Both Richard and Carol are cancer survivors, and both of them also have new books coming out this fall. We'll be talking about the relationship between our experiences with illness and our art. Despite the grim aspects of the topic, I think it will be an uplifting discussion!

When I met Carol at the Gallery Walk a week or two ago, we agreed that we couldn't comprehend how people who are not artists or writers cope with illness or other major traumas in their life. We know that it's perfectly possible for them to cope; it's just that making art (for Carol) and writing (for me) are such big and important parts of our own coping mechanisms that it's hard to understand how anyone could be without one or the other.

I had to remind myself of that, though, when it came to writing today's blog. My first impulse was to report that I didn't have much to say, except to encourage people to come to the Book Festival presentation. But when I thought about it honestly, I realized that I had plenty to say, but it wasn't going to be easy to write, or, perhaps, to read. It's not the "I'm keeping my spirits high and focusing on the wonder of the moment" kind of stuff I prefer to write--the way I prefer to think of myself. (And really, the way I usually am, I think.) It's about anxiety, which is my current emotion.

Last night I dreamt that my oncologist was leaving town. I have absolutely no reason to believe this is actually happening, but part of my anxiety, I know, results from the fact that he has been out of town for the past week, and therefore I am quite up in the air about my treatment options. Most of the time I don't think this one-week delay matters much, but I've been off chemo now for four months, and who knows what the cancer is doing. Every time the phone rings, I expect it to be Dr. Holen, who's supposed to call to tell me what's next. So far, it's been a friend who knows someone who wants to buy a copy of Black Eye; the Democratic National Committee which wanted money for Senate contests; and (as I was writing the last sentence), someone from The Nation, who presumably also wanted money, but I didn't wait to hear what she had to say before I hung up.

I'm also anxious about a "swallow study" scheduled for tomorrow, ordered by my primary care doctor because the radiologist who diagnosed my last pneumonia thought it might have been caused by aspiration. "Is that possible?" the primary guy asked, and I said it certainly was. As anyone knows who's eaten with me in the past year, unless I'm pretty mindful of chewing and swallowing, I have a tendency to choke on crumbs or even liquids. (My mother always told me not to talk with my mouth full, but I don't seem to have learned that lesson.) I'm anxious about the procedure itself, which I think involves swallowing barium, which doesn't sound too delicious, and also about what they might say about the cause(s) of the swallowing difficulty, and what they might want me to do about it. Eat only mushy stuff? I don't think so....

And of course there's the stuff everyone's anxious about these days. The election. Well, I tell people that to allay their anxiety, they should go out and work for Obama, and in the past week I've done as much volunteering as I could find time for. In Facing Fear, I write about the importance of working together, in community, as a means of finding courage and hope, and I can tell you that it really does help. I've been totally astounded by the number of people walking into the Obama headquarters every time I've been there, all volunteering their time to make the country a place they're proud of living. It really does make me hopeful. And if Obama loses, I'll know it wasn't because I sat at home, worrying.

The economy. As the stock market plummeted last week, I assiduously avoided looking at my financial statement or calling my financial advisor, under the theory (also propounded in Facing Fear) that sometimes having more information is simply not useful. I long ago decided to find someone I trusted to take care of my money, and to pay him to do it, and I'm not about to make any big changes right now. I can still pay my mortgage and I don't need a new car. So why do I need to know exactly how much money I've lost since October began?

I think it's time to go back to Facing Fear and re-read all the other prescriptions for allaying anxiety. Maybe that'll help with the medical stuff. (I'm reminded of the line from Disney's "Alice in Wonderland": "I give myself very good advice, but I very seldom follow it.") But I have to thank all of you for reading this far, and giving me the chance to say what's on my mind. I'm feeling better already. (That's what writing does for me.) I'm just a bit concerned that now I've spread the anxiety around, and maybe you feel worse.

Sunitinib Trial Update

I just got a call from one of the phase one trial nurses who told me that the PET scan people have decided I am not eligible for the trial. Apparently the "lesions" (aka tumors, I believe) are too small for them to reliably follow with their imaging technology. Good news for me, maybe, as far as the cancer's progression is concerned, but not so great in the what-next-for-treatment department. And I won't know about that until I get a chance to talk with Dr. Holen, my oncologist, who is out of town for the week.

Sigh. The big annoyance is that I was beginning to think it was safe to plan some trips for the winter, and now that's all up in the air again.

Wonderful Week

What a fine week, ending yesterday with the birthday season finale, a brunch with biking friends hosted by Diane Lauver--in the picture, from left to right: Gail Van Haren, Maureen Armstrong, Margaret Peterson, Tracy Lewis (standing), Kathy Waack, Diane, Angie Mayr, me, Susan Riley. Although I describe these as my biking friends, they are, of course, much more than that, and I realized during the brunch that one of the wonderful things about their friendship is that they've kept me part of the group, in the loop, even as my annual biking mileage has dipped well below 100. Thanks!

The week included other wonderful events, too. On Friday evening, I participated in the local gallery walk--something I usually shun, because hanging out at noisy receptions trying to make small talk has never been fun for me. And now I can't even hang out at the food table, stuffing my face to avoid mingling. But both my publisher, Richard Quinney, and my book designer, Ken Crocker, had shows of their art work opening on Friday, so I wanted to go to those galleries. Seeing their work (Richard's photographs and Ken's paintings) would have been treat enough, but at each gallery, there was a bonus. Richard's gallery is connected to a coffee house next door and Caroline Hoffman, a friend from starting-the-Children's-Museum days (early 1980s) was showing her photographs of poppies there. I didn't know about the show, but Caroline saw me at Richard's gallery and told me about it. Wonderful work; in fact, I ordered a t-shirt with one of her poppy prints on it.

The bonus at Ken's show was meeting two psychologists (a couple) who were very interested in Facing Fear. Linda Roberts, in fact, does research on the effects of a cancer diagnosis on couples' relationships. We had a long and interesting conversation, not at all "small talk." Fortunately, it was quiet enough for me to be heard!

Ken told me I'd just missed seeing Carol Bjerke, the artist whose image of a boat is on the cover of Facing Fear. I was disappointed, because I hadn't yet met her. But later in the evening, by amazing coincidence, we did meet. I had such a good time gallery hopping that I decided to stop at one more gallery on the way home, to see photographs by Jim Barnard, another Children's Museum friend whom I haven't seen in about 25 years. I was catching up (more or less) with Jim and his wife Barbara, when Carol walked into the room, looked at me, and asked, "Are you Judith Strasser?" (Later she said she recognized me from my blog picture.) We had a good conversation, and I'm really looking forward to our presentation together (with Richard Quinney, too) at the Wisconsin Book Festival on Sunday, October 19. (Main public library downtown, 4 PM--come see us!)

All this took place at Ma Cha, a tea house/gallery, where the proprietor has a truly amazing memory for his customers. I've been there four or five times, always in the afternoon, so when he saw me leaving on Friday about 9 PM, he said, "You're out late tonight!" A young guy who was buying tea looked at me and said, "Of course. It's Friday night. She's partying down!"

And I was. It was really a great evening, one I never expected would, or could, be so wonderful!

This entry has gone on long enough, so I'll just mention a few other of the week's activities: counting and assembling Obama/Biden lawn signs for three or four hours; celebrating my birthday (yet again!) with Janet Zimmerman, Susan Riley, and Diane Lauver at a nice restaurant before going to a play Wednesday evening; sending off the final cover proof for Facing Fear, the last bit the printer needs to make the book happen; receiving all sorts of wonderful gifts, including a gorgeous bouquet of Farmers Market flowers from my friend Sandy; and signing the consent form to participate in the sunitinib trial. I still don't know when that will start--a nurse was supposed to call on Friday with the schedule for the CT/PET scan that has to happen first, but I still haven't heard from her. I gather this requires coordination with the nuclear medicine physicists involved in the trial, so I won't get too impatient until tomorrow.

And the wonderfulness of the past week has already spilled over into this week. If you get a chance, check out this blog about the Great Lakes, which I just learned about today:

http://www.greatlakestownhall.org/opinion/issueview.php?forumid=2&topicid=1166&postid=2399&topicsubject=%22Island%20Eyes%22&dontscroll=