Gifts

Last week, I got three wonderful gifts of a medical sort. First, the follow-up X-ray of my lungs was much improved after the pleurodesis, and the doctors agreed I was not crazy to get on the train tomorrow and head west. Second, they suggested that one of the reasons I was so tired was that I was marginally anemic, or maybe just plain anemic, and marginally in need of more red blood cells. So Friday I had a transfusion, and it has made me more peppy, though certainly not hugely energetic. And third, I learned, also on Friday, that I am still being considered for the Phase 2 study at the University of Chicago. I am to be there on Thursday morning, January 8, to sign the consent form and begin the further screening process. This means leaving Madison on Jan 7, less than two days after I get home from my trip to Clifornia and Texas--I just hope by then the weather has moderated a bit.

Obviously, this is all good news, and the sorts of gifts I can never repay. But it does occur to me that all you healthy people out there can help by going to your nearest blood bank and making a donation. I used to do this regularly as a young adult, and really, it's one of the most rewarding things I've ever done. They treat you like a very special person (which you are), and you know that you're making a really valuable contribution to someone's health.

Now I am in the very strange position of heading out of Madison to see friends and family over the holidays (and my sister Paula's birthday) and not taking a single gift with me. Not even a house gift of Wisconsin cheese or chocolate. I have barely been out of the house since the beginning of the month, and then chiefly on trips back and forth to the hospital and clinics. I haven't driven in weeks. And internet shopping seems particularly heartless to me. I've alerted my family to expecct their Chanukah gifts by Groundhog's Day. Still, it feels weird.

But I have seized on a conversation I had recently with my neighbor Bridget, a self-confessed "ambivalent Catholic," who was describing the priest's message at mass a week or two ago--about how this season is about presence, not presents. It does seem egotistical, if not egomanaical, to suggest that my friends and family shoulde be satisfied with my presence. But I know, from my experience the last couple of weeks, that people's presence is really what it's all about. I have been helped by so many people, in so many ways--from the doctors who made sure I got to my book party, to the hosts of the book party, to friends who brought food and comfort, did laundry, shoveled snow, drove me to the clinic and hospital and also on a little round of errands, helped me prepare for and totally cleaned up after last night's mini-solstice party... these people's help and their simple presence in my life has literally made it possible for me to function and progress beyond "invalid" status. These are the true gifts this season.

As the light grows stronger and the days longer, my wish for all of you is that people are present in your lives, as they have been for me. In the last chapter of Facing Fear, I write about the importance of community. But the chapter is really about the importance of other communities, in other places. I wish I had known, when I was writing that chapter, how much I would come to value my own community, my friends and neighbors. I would have included you all in the book.

Thank you. May you have holidays full of the presence of good friends and family.

Lungs and Friends

Well, friends come first, and I will write about them, but I know a lot of you are waiting for an update on my lungs and hospital stay--so I'll fill you in briefly.

I was in the hospital until Wednesday night. This was a shorter stay than I'd expected, because on Monday, when the surgeons poked around in my chest, they discovered a tumor blocking the bronchus in the right lung. This meant they did not want to (could not?) do pleurodesis to that lung, but instead decided to do something else, like ablate the tumor with a laser, after New Year. I have to say, knowing the difficulty of recovering from pleurodesis to one lung, that I can't imagine what recovering from two such procedures would be like.

For two days after I got home, I could barely get out of bed. My big adventure on Friday was to walk (once) from my bedroom to the den and the study and back to the bedroom. Anyone who's been on my second floor knows that amounts to maybe a hundred feet. And just motivating myself to do something as simple as put on a clean pair of underpants already set out on my bed took about an hour.

I think, looking back, that some of this had to do with lingering effects of anesthetic, but some also had to do with energy. Finally on Saturday I was able to take a bath and go downstairs. (Down wasn't the problem; the question was could I get back up.) I just stayed down for an hour or so, but yesterday (Sunday) I spent pretty much the entire day downstairs, entertaining a succession of friends who'd come with food, or to shovel snow, or to bring an article about Big Bend, or to do laundry, or to chat. I went upstairs five or six times during the day, and by the last few trips, could go up without stopping to rest. So I'm definitely getting stronger, but very slowly.

Tomorrow's goal is to actually leave the house. I'm still hoping to be getting on a train to LA on the 23rd, but I'm not going to make the final decision until Thursday afternoon, when I have an "after hospitalization" follow-up appointment with the oncologist.

Now, about my remarkable community of friends and neighbors. Obviously, without help, I would have been stuck in bed with no food for 48 hours. Although I'd left the back door unlocked so people could come in even if I was upstairs, the long driveway was snowy and slushy, hard to navigate. I had a lot of dirty clothes--the washer is in the basement, and since my dryer is broken, wet clothes have to be hung on lines. (It's so dry here in the winter that even heavy towels dry overnight.) You get the idea.

Well, the list of people who just figured out what needed to be done, and jumped in to do it, is very long: led by Janet, my next door neighbor Bridget, and Diane, but including many more--Liz, Dave and Kim K, David T, Tracy, Dennis, Robin and Will, Catherine, Jesse Lee, Sandy. And I'm terribly afraid I'm leaving someone (or more than one) out. The farther back I try to remember, the harder it is--effects of anesthesia, I think.

What I can't forget, fortunately, is the truly spectacular book party last Sunday. It was such a warm and wonderful gathering of friends and fans, including several people who were instrumental (whether or not they knew it) to the writing of Facing Fear. Friends had followed my sister Susie's request to bring an amaryllis on her behalf, and they found what has to be the tallest and most flower-full plant in the city of Madison. It's still blooming in my bedroom, after keeping me company at the hospital for half a week.

The memory of the party warmed me through the week, and will continue to buoy my spirits forever. And so will my gratitude to the wonderful people who are helping me get through this difficult time. Thanks so much to everyone!

Hospital Days

Yes, you read that right. I have been comfortably ensconsed in my single room at UW Hospital (views of the Capitol and Lake Mendota, wi-fi, room service meals) since Thursday evening, and I will be here through most of the next week. When I got back from Thanksgiving, I decided that I'd better find out why I was so exhausted and whether the MDs could make it easier for me to breathe. Things had been slowly getting worse--I really should have seen a doc before Thanksgiving, but I didn't want to screw up my trip east, so I just ignored what was going on. But Wednesday, after shopping for chicken soup ingredients and getting my flu shot, I came home to make the soup and had to sit down at the dining room table to cut up the veggies. And then later I had to call the neighbors to ask if they'd wheel the trash cart out to the curb. So I decided I should call the clinic Thursday AM.

The nurse, after consulting briefly with my primary care doc, said I should go directly to the ER. I was kind of surprised--I mean, don't we hear all the time that we should not go to the ER? Well, when I got there (dropped off by my friend Robin), I discovered that I had uttered the magic words: "I'm having trouble breathing." They had me in a wheelchair and whisked into an examining room and hooked up to oxygen within what seemed like seconds, and two teams of docs, first the medical service and then the oncologists, appeared minutes later. Then there was a nebulizer treatment and an x-ray, and then the conclusion that I had a pleural effusion in my left lung--fluid (caused by the tumors) built up in the pleural cavity, which is the space between the lung itself and the membrane that connects the lung to the chest wall. (I am learning so much anatomy! It's really fascinating.)

So the fluid had to be drained, and because they were also concerned about a blood clot that might have formed in the lung, I needed a CT scan. Somewhere in there I asked if I was going to be admitted to the hospital and they said yes. I explained that was all very well, but I needed to be out by Sunday evening because my friends Frank and Dolores Emspak and Janet Zimmerman were hosting a book party for Facing Fear. The on-call oncologists (a resident, a fellow, and the attending) who had been consulting with Dr. Holen, knew about the book and could not have been more helpful and accommodating. They drained 1.2 liters of fluid Thursday evening (which immediately eased my breathing) and also arranged for me to have the CT scan that evening. (Fortunately, there was no blood clot. I still haven't heard anything from U of Chicago about a phase 2 study, and at this point I'm not optimisic, but a blood clot in the lung would have definitely put the kibosh on it.)

Then they started figuring out how to proceed with the next steps, while still getting me to the book party. There are apparently three options for pleural effusions: repeated draining (not an especially painful procedure, but has to be done frequently because the fluid builds up rapidly); a permanent drain; or a surgical procedure called pleurodesis. This last is preferred for people expected to live longer than three months, according to a website I was checking for the spelling of the name. Pleurodesis is very strange, I think. The surgeon totally drains the fluid (even after they took 1.2 liters out, there was still more--it's too dangerous to take it all out at once). Then they blow (?) sterile talc and/or maybe antibiotics into the cavity, causing inflammation and scarring. Apparently if there's no space for the fluid to go, the tumor cells just don't produce any! I'd love to know who figured that out, and how they did it.

The thoracic surgeon prefers to do this procedure in an operating room, although I guess that's not essential. I told him (well, them--fellow and attending) that my goal was to go to LA on Dec 25, so they decided to try to find an OR on Monday morning. And they did! Working with the oncologists and my desire to go to the book party, everyone agreed that I could be in the hospital until Sunday morning, have a day pass, and then come back Sunday evening to be ready to go this morning. (Full disclosure: I'm actually writing this on Saturday evening, to be "published" on Monday. I suspect that the painkillers and anesthesia I'll be subject to would not generate a very coherent post.)

Today they will also put a drain in my right lung cavity, which has less fluid, but still some, and on Wednesday, they will blow talc into that cavity through the tube, which they will then remove. I think I will be in the hospital until some time Friday.

I asked the surgeon if I could fly on the 25th, and was actually delighted when he hesitated a little, giving me an excuse and permission to take Amtrak from Chicago and spring for a roommette! I actually love trains, and I will get to LA (if the train's on time) 12 hours earlier than I would have by plane--I think this is grand! After I spend a couple of days with my friend Claire, Jed and I will drive to El Paso to meet Nate, and we will have our Texas adventure--their gift for my (last September) birthday.

I know it sounds odd, but I think things couldn't be much better. I have had to give up the idea of the traditional big solstice party, since there are only ten days or so between getting out of the hospital and leaving for LA. But I'm still going to make latkes (fresh, not frozen) on the 21st, which is the first night of Chanukah as well as the solstice for the many friends and neighbors who've helped turn the past week, which could have been so dark, into a splendid display of light--running errands, visiting me, shoveling, and even doing my laundry! Not just odd--even sappy, because who could ask for anything more?

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.

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=

Down and Up

It's come to my attention that some of you think I'm amazingly upbeat all the time--you can't imagine how I manage. The truth is, I don't. And last week was a fine example. Thanks (or no thanks) to the pneumonia, I was not only tired and short of breath, but I also felt extremely sorry for myself. After the weekend, which had been about as gloomy, weather-wise, as Madison gets (no sun at all for two days), Monday and the rest of the week were gorgeous. But I could barely walk as far as the coffee shop on the corner--and my summer-long goal of riding my bike the twenty miles of the Capital City trail one of these September weekends was totally out of the question.

The two antibiotics I am taking were working, I could tell, but much more slowly than the levaquin I had last time, to which I am now allergic. Several wonderful friends called or e-mailed at the beginning-middle of the week to see if I could come out and play, and I couldn't. Poor, poor me. Not even the knowledge that Facing Fear had finally gone to the printer was enough to cheer me up.

Then a nurse called to talk to me about taking part in a clinical trial of sunitinib, a drug (a pill, actually) that acts to inhibit angiogenesis--the proliferation of new blood vessels that are essential for tumor cells' growth. I had heard and read about sunitinib, which is already approved by the FDA for kidney cancer (for which there is no other treatment) and one other solid tumor, a stomach tumor of a kind I don't have. The trial I expect to be joining looks at whether sunitinib is effective against other kinds of solid tumors. It actually compares two dose protocols--one group takes the pill for two weeks, has one week off, and then repeats that cycle; the other group takes it for four weeks and has two weeks off. But both groups do take the sunitinib--there's no placebo control involved.

Of course, I can't start this until the pneumonia is resolved. Suddenly I realized I'd be quite happy to go to the hospital to get a stronger IV antibiotic, if that was necessary to get into the sunitinib trial. But I doubt it will be necessary; I'm feeling remarkably much better, and I still have another few days on the oral antibiotics.

Even this news (which came on Wednesday, I think) wasn't quite enough to pump my spirits back up to their usual level, though. That required feeling better physically, which happened gradually, and finally really took hold over the weekend sometime. My breathing seems almost back to normal (what passes for normal for me), and I have much more energy, though I can't say I'm actually doing very much with it other than hanging out with friends, drinking green tea or coffee. Which is, of course, great fun.

On Saturday I did get myself deputized to register voters, but the local Obama campaign is really focused on canvassing and phone banks, not registration drives, and since those activities are pretty difficult for me with my lack of much voice, I'm not sure what I'll be doing. Something, I hope. Though I confess to having gone to the gym this morning instead of to the rally with Michele Obama.

Come to think of it, there are a lot of things I'm not sure about! For instance, I still don't know whether Facing Fear will be available in time for my appearance at the Wisconsin Book Festival on October 19, but if you're interested in knowing what that's all about, check out the Book Festival web site :

http://www.wisconsinbookfestival.org/schedule/events.php?eventdate=2008-10-19

Therapies That Work

Last Thursday I had my first CT scan and first oncology appointment since the beginning of the summer, when I started my vacation from chemotherapy. Much to Dr. Holen's surprise and mine, the scan showed remarkably slow growth of tumors in the months since I stopped chemo. (Haven't had oxalyplatin since May, or anything at all since mid-June.) So rather than start the oxalyplatin again, which clearly worked but causes neuropathy, not to mention cold sensitivity, Dr. Holen suggested two possibilities--one, waiting until things change for the worse and then (presumably) going back on oxalyplatin, and two, investigating what clinical trials I may be able to enter. He described three or four new drugs that look very hopeful; of course, whether the trials are open, and whether I'd be eligible for them, are big questions. He seemed to think eligibility was not an impossibility--I'm skeptical, having already been washed out of a couple of trials because of too much prior radiation and/or chemo. Anyway, he's going to check on what's available and get back to me sometime soon. And in fact today I returned from the gym to find phone messages about getting a blood test that made me think maybe the process of figuring out my eligibility for a trial is alread in motion.

Dr. Holen seemed genuinely excited by the results of the scan and the possibility of finding some sort of scientific breakthrough for stomach cancer, and he admitted, "It's odd to say to someone "'your cancer is worse'" (because the tumors are bigger), and yet have the overall picture be good news.

Of course, maybe he was unduly influenced by the little (but very high-end) cupcake I gave him to celebrate two years of survival with metastasis, but I don't think so.

Anyway, all this meant no chemo on Thursday--a big surprise--so they just de-accessed my port and I went to an expensive shop and bought a leather wallet to celebrate, and to replace the wallet lifted Sleazebag Nimblefingers when I was in Chicago.

One of the things Dr. Holen said to me was, "Whatever it is you're doing--exercise, whatever--keep it up!" Which helped me decide to describe, in this blog post, some of the things that I am doing, as well as some of the things that I'm not.

I've often said, in recent months, that I think that the reason I'm still alive has a lot to do with the supplements I take, recommended by Dr. Lu Marchand, the integrative medicine doctor who comes into the oncology clinic to work with cancer patients. Obviously, the chemotherapy I was on all last fall, winter, and spring, has been vitally important. But when I first saw Dr. Marchand last fall, I was losing 5 pounds a month (I went from about 130 to just barely over 100 pounds between June and December 2007) due to diarrhea that I couldn't control. I was extremely weak: I had almost no muscle mass and needed to use those door-opening buttons designed for handicapped access to get into public buildings with heavy entrance doors. Obviously, this situation couldn't go on much longer, and also obviously, chemotherapy wasn't likely to help--in fact, the chemo was partly responsible for the diarrhea.

Dr. Marchand made a lot of recommendations, all based on (the admittedly limited amount of) scientific evidence on "alternative"--or rather, complementary--therapies. She suggested that I make myself smoothies using whey powder (for protein), yogurt, and flax seed oil, with a banana to improve the taste. I don't much like bananas, and I don't find this at all delectable, but I do force myself to eat a certain amount of this glop every day, and the extra protein, plus the strength training I've been doing, has definitely built some muscles.

I also take a lot of supplement pills: milk thistle, melatonin, vitamin D-3, Host Defense (a combination of powdered medicinal mushrooms) and a squirt of another combination of mushroom extracts, as well as a multi-vitamin and calcium (both of which I've taken for years). Most of these, I think, are intended to boost my immune system and help the chemo work against the cancer. To control the diarrhea, I take immodium and, with every meal and snack, pancrecarb, a formulation of pancreatic enzymes that help digestion. I'm still playing with dosages of these, and also with the timing of meals. It's hard enough, because of my surgically-reduced stomach, to get enough calories to sustain life; I hate it when--as often happens when I eat in the evening--the food departs my system before there's time for the nutrients to be absorbed!

Before she recommends any supplement, Dr. Marchand checks it against the chemo I'm taking to be sure there won't be adverse reactions. Very important--and a good reason why no one should just look at the list of supplements above and decide, "Oh, those would be good for me."

All this--thinking about food and digestive problems and having to eat glop and count out pills and make sure I've taken them (and I haven't even listed the various prescription drugs I take daily)--is very tedious. I hate it. But obviously, it has worked. I haven't been able to gain any weight, but I haven't lost any more, and I've definitely built muscle. (Just ask my massage therapist!) And something--my hyped-up immune system working with the chemo, maybe?--has slowed the spread of the cancer.

So there's definitely something to complementary therapies (including acupunture, regular exercise, maybe even massage and Feldenkrais). But--there's also a lot of potential for quackery. Every so often, a very well-meaning acquaintance or even a stranger will tell me about something I definitely should take to fight my cancer. I've had people who read my blog implore me to investigate supplements sold on web sites set up by friends of theirs. A stranger once sat down next to me in an airport waiting room and described an alternative medical clinic in Florida that I should investigate. And recently, a new friend--a tourist visiting Chicago from another country--spent a lot of time trying to convince me to take "Vitamin B-17," found in apricot pit kernels; she based her advocacy of this therapy on the testimony of one man who claimed to have cured himself of leukemia by eating apricot kernels, avoiding caffeine and alcohol, and I don't remember what else. My friend was thrilled to disover that in the U.S., apricot kernels are freely available for purchase in health food stores. In her country, she said, they're banned. Not too surprising. Here are a couple of quotes from the Wikipedia article on amygdalin, aka Vitamin B-17 or laetrile:

"Though it is sometimes sold as "Vitamin B17", it meets none of the criteria of a vitamin. Amygdalin/laetrile was claimed to be a vitamin by Ernst Krebs, Jr in the hope that if classified as a nutritional supplement it would escape the federal legislation regarding the marketing of drugs."

"A 2006 Cochrane review of the evidence concluded that there is no sound evidence that laetrile is an effective cancer treatment^[8] and that there is considerable doubt about its safety.^[8] It has not been approved for this use by the United States' Food and Drug Administration.^[5] The U.S. government's National Institutes of Health evaluated the evidence, including case reports and a clinical trial, and concluded that they showed little effect.^[9] A 1982 trial of 178 patients found that tumor size had increased in all patients. Minimal side effects were seen except in two patients who consumed bitter almonds and suffered from cyanide poisoning."

Cancer is no fun, chemotherapy is often even less fun, and I understand why many cancer patients and their family and friends look for alternatives. I consider myself extremely fortunate to have found a board-certified doctor who is a knowledgeable advocate for tested therapies that supplement and complement chemotherapy--indeed, to have easily available access to her in my oncology clinic. Many oncologists are still very wary of "alternative" therapies, which they seem unable to distinguish from evidence-based complementary therapies, and I have friends and family members with cancer whose university-associated clinics offer nothing by way of integrative medicine.

This is more than a pity. It's as much of a scandal as apricot kernels and other quack remedies.

Cancer Lessons

The past few days have confirmed, or re-taught, some of the lessons I've been learning for the past 3 1/2 years: have fun, know your limits, accept help, don't sweat the small stuff (and a lot of the "stuff" is smaller than you think).

Starting with the last of those lessons: On Wednesday last week, I drove down to Chicago to meet up with my college friend Claire, who was stopping over en route to an amazing family reunion on the east coast. After a good dinner at an Armenian restaurant, we walked to Navy Pier for a terrific fireworks show. When we got into the cab to head back to the hotel, I realized that my purse was strangely light. (I'd just started carrying a purse instead of the travel wallet I've held in my hands for years, if not decades.) I unzipped the purse--and discovered that the travel wallet was gone, along with a couple of hundred dollars (including the wonderful billfold designed and folded by my son Jed from twenty one-dollar bills), four credit cards, my drivers license, university ID, library cards, AARP and AAA cards... You get the idea.

We asked the cab driver to take us back to the restaurant (the last place I'd had the wallet out), but when Claire went in to inquire, she got nothing but blank stares from four waiters. She was, I think, more upset than I was. In fact, I was strangely un-upset. Believe me, worse things have happened. And I was kind of amazed (and embarrassed) that Sleazebag Nimblefingers had managed to unzip the purse, lift the wallet, and re-zip the purse without my noticing.

Fortunately, Jed and Nazgol were still in Madison, and Jed was able to find, in the mess in my study, most of the info I needed to report the theft to the credit card companies. I called Chase first, and was astounded and touched that one of the first questions the customer service person asked me was, "Are you safe?" Bank of America asked me (as part of their security check) what my work phone number was--and even though I retired nine years ago, the phone number came right to mind! And the cs person at the third company was able to cancel both that company's card and the one I hadn't yet called. All this took place less than two hours after the pickpocketing, but Sleazebag Nimblefingers had already charged drinks (I assume) at several bars and something (beer?) at gas stations and a Jewel market. I'm sure a good time was had by all that evening! And yes, I was out a chunk of change, but he or she no doubt needed it more than I do. Claire owed me her share of hotel room; she gave me cash, which was more than enough to buy gas and lunch enroute back to Madison.

Don't sweat the small stuff.

As for the help and limits-- Saturday I was joined by four wonderful biking friends (Diane, Angie and Jim, and Gail) on the TeamSurvivor Chocolate Chase fund-raising ride. Angie and Gail decided to do the 20 mile option. Jim and Diane asked what my goal was and when I said 10 miles, they started off with me. Jim lost us after a pit stop in a cornfield, and after only 3 1/2 miles, I told Diane that I had changed my mind and wanted to stop after the 4 mile route. The ride was a bit hilly, and I could tell that I just didn't have the stamina to ride another 6 miles and be able to do anything more than nap for the rest of the day. And I did have other plans for the afternoon and evening! So I sucked up my pride and called it quits. I think the limits on energy/endurance are related to lingering effects of the pneumonia, and I have no interest in courting a recurrence of that. So I'm actually proud that I knew and respected my limits. And that I had no qualms at all about accepting Angie and Jim's help in wrestling the bike back into the Subaru.

And--best of all, and a little reward (I think) for my good sense: at the raffle after the ride, I won a $20 gift certificate to David Bacco Chocolates, an expensive and exquisite place I have heretofore only patronized for gifts for others!

As for having fun: what could be more fun than the past week, which (in addition to the above) included two days with Jed and Nazgol including a visit to the House on the Rock tourist-attraction-supreme; an overnight stay in Wilmette, Illinois, with my high school friend Barbara; two concerts at the Token Creek chamber music festival; a walk at dusk with my friend Sandy in search of great horned owls...

This week it's back to what passes for normal life around here, with a CT scan and visit to the oncologist on Thursday, and who knows--probably, I'd guess--resumption of chemo. But there are still a few days before all that. And I'll post a health status report next Monday.

Modernity: Blessings and Curses

Well, first the blessings. The "minor virus" I reported on last Monday turned out to be pneumonia. I know, that doesn't sound like a blessing. And when the x-ray revealed that the afternoon fevers (102+ when I finally got to a thermometer on return from Michigan last Sunday) were caused by pneumonia in "three places" (lobes?), the doctor wanted to lock me up in the hospital. That struck me as a Bad Idea and I refused. So she put me on a strong antibiotic (levaquin) and a short tether, telling me that if my breathing got any worse, I should go to the ER immediately and get myself admitted.

But in fact my breathing was no worse than it has been all summer (ever since the June blooming of the Japanese lilac trees, to which I am allergic), and it is distinctly better than it was a year or even six months ago, though it is by no means what I or anyone else would consider "normal." This particular doc, who was subbing for my primary care guy, had never met me before, so she was shocked by my impaired breathing, and I think didn't believe me when I said it was no worse than usual. And apparently the first couple of days of pneumonia are the most dangerous. But I started running a fever on Friday, and I didn't see her until Monday--I was already past the first couple of days. And in fact on Saturday morning I'd felt good enough to bike 11 miles into a head wind.

Anyway, I started popping pills Monday afternoon, and they worked just fine. By Tuesday, I didn't need to take Tylenol in the afternoon; by Thursday, I didn't have a fever at all. I saw the doctor again Thursday morning, and she was much reassured--even embarrassed because she couldn't hear anything problematic when she listened to my lungs. She said that it takes 6-8 weeks for pneumonia to completely resolve in someone who has no underlying lung disease, which of couse I do have. So we'll see what happens. They can check on the pneumonia when I have my next CT scan, soon afer Labor Day.

I was supposed to take the levaquin for ten days, but yesterday morning I woke up with hives on my legs which I suspected was an allergic reaction. Went off to Urgent Care, where my suspicion was confirmed by another doctor who said to stop the antibiotic. He also said that the drug does most of its work in the first two days. I'd taken the drug for six days and he wasn't inclined to prescribe a substitute unless I relapse. I'm now allergic to four different classes of antibiotics, so that was fine with me. He did write a prescription for something I can take with me up to the Boundary Waters in a couple of weeks, in case I get sick up there where there are more loons than medical personnel.

So there you have a blessing of modernity: you contract a dread (and formerly fatal) disease, pop some pills, and are miraculously cured. Would that it worked that way for all dread diseases. Stomach cancer's a little more recalcitrant.

And then there's the saga of my new laptop, sterling example of modernity's curse. Well the laptop, which I picked up on Monday (between getting the x-ray and learning the diagnosis), is lovely. But I can't get Thunderbird, my email program, to work, and even if I could, all the addresses are stored somewhere on the old computer, not this one. What's more, I can't get the laptop to communicate with my old, reliable laser printer. Maybe this is a cable problem; maybe not. But I had to order the new cable on line, and the only way to determine if it's defective, I think, is to order another one on line and wait for it to arrive. Of course as some snippy young man at the UW IT help desk suggested, I could just buy a new printer. "They only cost $20 or $30," he said, rather impatiently. But why would I junk a perfectly serviceable, indeed wonderful, old friend? I'm afraid this was a case of generational disconnect. I guess that like my printer, I'm operating on a parallel connector, and this unhelpful and wasteful "support person" is, like my laptop, only conversant with spiffy new USB connectors.

And of course, while I was trying to get the printer to work, the word processing program, which had been running just fine, crashed, permanently, I think.

But hey, all this is just the usual curse of technology, and we know that a little time and money solves that sort of problem. So I'm not as aggravated as I might be. I'm feeling fine, and that's what really matters.

The Can Do/Can't Do Ratio

Hello from Manistique, Michigan! Today (I'm writing this on Saturday July 26) was the last day of the MUP Shoreline bike ride, and the riders had a terrific tail wind most of the day, which was gloriously sunny. The ride ended where it started, in St. Ignace. We spent some time at the annual whitefish festival, which happened to be today, and then started to drive south, taking a brief detour to drive across the Mackinac Bridge, which connects Upper and Lower Michigan, and then back again.

I'm taking advantage of the Internet access and computer at the Comfort Inn where we're staying because I will be computerless when I get home Monday. I should be able to pick up my new computer Monday, but who knows how long it will take for me to set up the Internet connection. Better to write the blog today and set it to publish on Monday, I think.

Which I suppose is another instance of the can do/can't do ratio I've been thinking about today. This has not been the most wonderful vacation I ever took (in any event it would have a hard time competing with Mozambique and South Africa, the Galapagos, Hawaii, Japan, Egypt....). But I think the problem was the almost constant reminder of what I can no longer do, compared with what I can. I generally try to focus on what I can do, not what I can't, but that proved to be pretty hard, when everyone else was riding and talking about rides past, present, and future. Although my friends were very willing to ride slowly with me, the weather conditions, the nature of the beginning and ending of each day's route, and a mild virus that laid me low on Wednesday evening, combined to ensure that, other than the spectacular circumnavigation of Mackinac Island last Sunday, I only rode yesterday morning.

That was just 11 miles, into a headwind, and I was actually very lucky to do it between rain showers. Later in the day, the bikers were drenched by rain so heavy that the car windshield wipers couldn't keep up with it. I was thrilled not to be on a bike right then (and also on an earlier day, when my friends arrived at our B&B bedraggled and soaked, having just biked through an hour or two of storms).

Well, live and learn. It was good to be with my friends, and to revisit some sights (like Tahquamenon Falls) that I haven't seen in more than 20 years. But I don't think I'd do this kind of trip again. Makes me too sad because of the can do/can't do ratio.

On the other hand, I did finish proofing the galleys for Facing Fear, sitting in a variety of coffee shops, parks, and restaurants. So at least I accomplished something!

Finally, a reminder to all of you who send me personal comments through the blog and clearly want me to respond. I will not publish personal comments for everyone to read; I will not respond to personal comments on the blog; and I will only respond to you directly if you send me email. My email address is jlstrass@wisc.edu.

See you in August, from my new laptop!

27 years and counting....

Lots of fun this past week: a wonderful bike ride with new TEAMSurvivor friends; paddling practice on the Yahara River; a great party, co-hosted with good friends, to celebrate various people's retirements, pending retirements, and/or resistance to retirement. The last guests left after midnight--and I was sorry to see them go! Who says "seniors" (I guess that's who we are, now) can't party hearty?

And best of all, a meeting with the marketing department at UW Press, where we were encouraged to bring out Facing Fear this fall, instead of next spring. The official publication date will be December 15, but we hope to have books in hand by the time of the Wisconsin Book Festival in mid-October. Of course, this depends on the production process moving smoothly and swiftly, but we have reason to believe that it will. I'll keep you posted!

But what's really been on my mind the past week is my younger son's impending Big Birthday. He'll turn 30 next Sunday. This means I will no longer be able to trust either of my sons. (Those of us who came of age in the '60s understand that we can't trust anyone over 30--ourselves excluded.) But seriously--and much more important--it means that despite having had two cancers, I've seen both my sons into their thirties. They were only 3 and 6 years old when I was diagnosed with Hodgkin's disease in 1981. I didn't spend a lot of time worrying that I wouldn't live to see them grow up--but I'd be lying if I said the thought didn't cross my mind. So here I am, 27 years later, and here they are, all grown up (and then some). Amazing. I feel very lucky. And as I've said before, it's a lot easier for me to cope with the stomach cancer, which was likely caused by the radiation treatments for the Hodgkin's, knowing that the radiation also made it possible for me to raise my sons.

So Nate may be worried about getting old (though he told me the last party he and Meghan hosted didn't break up until 6 AM, so he couldn't be feeling too old!) But I'm thrilled that he's turning 30, and that I'm around to see it happen.

Dragons

I was trying to decide how to title this post, which--as you'll see--is about a variety of things: a chemo vacation, anxiety, anger, (lack of) control. And about dragon boats, too. So I decided to call it "dragons," and as I typed that into the title box, I realized how apt a title it is for a chronic disease, which drags on, and on, and (hopefully) on.... And which is, or can be, a drag on energy, spirit, etc.

So "dragons" it is.

Last Thursday I saw Dr. Holen, my oncologist, for what we both hope will be the last time until September. I have one more chemo treatment (on June 19), and then I'm on vacation from treatment for the rest of the summer--unless something comes up before then. Dr. Holen warned, "You must be very vigilant about your health." And of course it was last summer, when I was on vacation from chemo, that the tumor attacked my vagus nerve and my voice began to disappear.

I was pretty anxious, going in to the appointment. What if the doctor discovered something going on when he listened to my lungs? What if he ordered a CT scan (which he'd mentioned last time I saw him), and it showed the tumors growing? It seemed entirely possible that all my plans for a summer of fun (including several trips with friends and family) would have to be scrapped.

But they weren't. In fact, Dr. Holen suggested that the next CT scan be in September, rather than this month, precisely because if something nasty showed up, they'd have to treat it, and if it showed up now, that would screw up my summer. Sometimes it's better not to know.... even (or especially) if you're a doctor!

A day or two after this appointment, I had a dream that revealed to me how angry I am at the cancer and my inability to take control of it and banish it from my life. In the dream, I was furious, screaming at the symbolic stand-in for the cancer, "You are so selfish; you don't take my needs into consideration, it's all about you, you, you." Oddly, until this dream, I never realized I was angry about being sick. Sad, yes, but not angry.

But the dream also pointed out that I can (and do) still control some aspects of my life, however small--in the dream, I went to a diner for breakfast when I was hungry because I'd had to rush out of the house without eating--and that means quite a lot. It's really important to do what one can, when one has the ability. Ultimately, none of us is going to be able to walk away from all the dragons!

In fact, this past week I took a big step toward a dragon--a dragon boat, that is. I went to my first training session for the Dragon Boat regatta that will take place on Lake Superior on August 23. (A dragon boat is an elaborately decorated huge canoe-type boat, that holds a crew of about 20 paddlers. The first, and maybe only, one I ever saw was poking around the Capetown, South Africa, harbor, but I think the sport is growing rapidly in popularity, world-wide. The Superior regatta attracts a hundred boats.) I will be part of TeamSurvivor's crew--TeamSurvivor is a group of Madison-area women cancer survivors who do a variety of physical activities through the year. The dragon boat program, which is generously supported by Rutabaga, a local paddle sports shop, involves weekly paddling sessions on the Yahara River. Right now, until our very own dragon boat is completed in mid-July, we train in Moby, a white war canoe on loan from Carl's Paddling (another local shop) that holds about 10-12 paddlers. I was afraid that I wouldn't have the stamina, upper body strength, or aerobic capacity necessary to paddle, and I was delighted to discover that none of that was a problem. And it certainly would have been, six months ago. So all the strength training I've been doing at the gym is really paying off! And I can't wait for the next training session, this Wednesday. It's really wonderful to be out on the water in the early evening.

As for the tumor dragons--I'll just have to trust I can fend them off for another two or three months. Right now, I definitely feel strong enough!

Planning

Hola! glad to be back after last week, which was highly productive but pretty tough, mentally. More about that later. But first, an invitation:

I'm organizing a "field trip" from Madison to south Chicago on May 11 to attend services at Trinity UCC, where Rev. James Wright is now senior pastor. (See the March 31 post for a description of my trip to Trinity with my son.) Madison Jews and others upset by the anti-democratic "guilt by association" rhetoric that links Barack Obama through Rev. Wright to Louis Farrakhan, and who want to support the beleaguered congregation at Trinity, will be warmly welcomed at the 11 AM service.

We will head down to Chicago on Sunday morning and will return immediately after the service (which is about two hours long), stopping on the way back for lunch. We will travel by chartered bus; the cost, if the bus is full, will be $30 round-trip.

If you'd like to join us, or would like more information, please email me at jlstrass@wisc.edu. (Email will work much better than a comment to the blog, which won't give me your name or email address!) To reserve your space on the bus, send a check for $30, made out to Judith Strasser, at 511 Sheldon Street, Madison 53711. We can take 29 people. At this point, enough people have expressed interest to fill about half the bus-- but only a few have sealed their commitment with a $30 check! Still I expect the bus to fill, on a first-come, first-served basis. So if you want to join us (and I hope you will), send in your reservation money ASAP!

Now, about the past week. I was, as I mentioned last time, at Edenfred, an artists' retreat in Madison. Although I went home at night, I worked very intensely from about 9:30 to 5 every day, Monday through Friday, revising my manuscript, Facing Fear. The retreat was a wonderful gift; I was able to make it almost the entire way through the manuscript, and I now feel confident that I will have the revisions finished before May 25, when I go up to Door County (northern Wisconsin) to teach poetry for a week at The Clearing.

But the week was exhausting, and emotionally difficult. For one thing, it was a very monastic existence, and I'm no monk. For another, the subject matter of the book is occasionally difficult. For a third, when I took short breaks to read a novel, the book I chose (because it was related to the subject of the last chapter of the monograph) was Lovely Green Eyes, by Arnost Lustig. Lustig is a terrific writer. He's a Holocaust survivor, and his many books of fiction, including Lovely Green Eyes, are accounts of life at Theresienstadt, the concentration camp where he was imprisoned. Not exactly escapist literature.

Also last week, I learned that a friend and fellow poet had been suddenly taken ill and was scheduled for very serious surgery in May. She sent me an email telling me about this, and explaining that she and her husband would likely not be able to go to Chicago with us, which they had been planning. But now, of course, it's difficult, or impossible, for her to make plans. When I wrote back, explaining that I understood completely about the way illness interferes with planning for the future--it's one of the really big losses I've experienced--I suddenly realized that this was precisely what I'd been struggling with all last week, without being really aware of it. I have no idea whether I'll be around to see Facing Fear when it is finally published. Which, in a way, calls into question all the work I was doing--because if I'm not around to market the book, it's unlikely to get into many readers' hands. (Hardly any books, these days, get sold without considerable marketing effort by the author.) Of course, that's why I didn't allow myself to think about this problem while I was at Edenfred--it could easily have paralyzed me, and then I wouldn't have accomplished anything. But sometimes it takes a lot of effort not to think.

Another friend pointed out that nobody can really plan how the future will take shape; people just think they can. Which is, of course, true. But I'd argue that those of us who live with existential uncertainty because of illness are a different breed. It's difficult to sit quietly and listen while friends plan their biking trips for next week, or their vacations next fall, or reserve hotel rooms for conferences next February, when these are events that I would, under different circumstances, also be involved in.

Last summer, when I had to cancel my plan to go to a chamber music retreat, I fell into a pit of despair, thinking I'd never be able to plan anything again. Soon enough, I climbed out of the pit by reasoning that I could plan to do things so long as, if I had to cancel, I wouldn't inconvenience other people. So, for example, last fall I recruited my friend and co-editor Robin to accompany me (and if necessary, substitute for me completely) on a speaking engagement in late April. Honestly, I didn't think I'd be around to give that talk. But last Tuesday evening, Robin and I drove happily off to Brookfield (near Milwaukee) and spoke to a group at the Unitarian church. Sold books, too!

Similarly, I now expect to be able to teach (with Robin) the last week in May in Door County; something I really questioned last fall, when we signed up. So planning is possible, but difficult.

As is quite obvious when I look out the window. Here it is, April 28, and it's snowing. Great big flakes.

New Art

First, a correction. Several people have noted that a couple of weeks ago I wrote that my "next" CT scan would be March 21. That was a mistake. It's Friday, April 4, and I will report the results in my post the following Monday, April 7.

And now about that art! My living room has a new piece, a beautifully calligraphed tunic, conceived and executed by my college friend, Chris Emerson. Chris (with assistance from another college friend, Deborah Young) emailed a bunch of family and friends, asking them to contribute words for the project. Chris chose the words she wanted to write--they include "grasshopper" (a family joke), "Judy" (written upside down, so I know who I am, if I'm wearing the tunic), "cousin," "antelope" (my totem animal), and quite a lot more. And then she wrote them, artfully dispersed, on the unbleached cotton tunic.

I imagined the tunic displayed on a dressmaker's dummy (also known as a "dress form") and last week I found one on the web and ordered it. It arrived on Thursday, and Jed (who arrived for another visit Friday morning) hauled the big box inside and helped me set up the dummy, which is surprisingly elegant. Now clothed in the tunic, it stands in front of the fireplace (which is never used), ready for viewing. I plan to have a viewing party in the relatively near future for the contributors-of-words, but anyone who'd like to see it can just come by! It's really wonderful, and very meaningful, and I'm both touched and delighted to have received this gift.

In other "art" news: the manuscript I wrote while I was on chemo three years ago during the first attempt to treat my stomach cancer has been accepted for publication! Borderland Books, an imprint distributed and marketed by University of Wisconsin Press, will bring out the book, tentatively titled Facing Fear, at a date yet to be determined. First I have some revisions to do--and since it's been two years since I finished the manuscript, and I haven't read it since then, I don't have the slightest idea, yet, what will be involved in the revision.

I decided to write a book about fear right after the 2004 Presidential election. I was thinking about a new project, and I decided that if Kerry won, I could try to revise the very bad draft of a novel I'd written the previous year. But if Bush won, I was going to find a way to write about the long-term consequences of the political manipulation of fear. I'd been thinking about this since 1986, when a right-wing nut murdered my college friend Chuck Goldmark, his wife, and two young sons. The murderer apparently confused Chuck, a liberal attorney, with his father, a respected Washington State legislator who had been red-baited and voted out of the legislature during the McCarthy era. In a sense, I believe, Joseph McCarthy and the politics of fear were responsible for these deaths.

I went to Seattle to do research for the book in January 2005, coincidentally the month my cancer was diagnosed. The book quickly morphed into a much larger meditation on fear--where it comes from, and how to cope with it. Even as I was writing, I realized that I was trying to get a grip on my own fears of cancer and death. And when I finished the manuscript, I knew that in some ways it didn't matter whether it was published: I had written it for myself, and it had served a really important purpose, teaching me how to live my life with joy and hope, despite a truly awful diagnosis.

Still, as you blog-readers might have noticed, I do want other people to read what I write! So I'm absolutely delighted that the book will actually see the light of day. Borderland publishes gorgeous books, and I'll also put at least part of the text on the web, to try to maximize readership. Keep reading the blog, and you'll be among the first to hear when Facing Fear is available.

But that won't be for a while. First--those revisions!

Some Bits of Miscellany

No profound thoughts today; just a little follow-up to my last blog, and a health update, for those of you who are curious. (Preview: things are fine.)

Politics: Just after I "published" my last post, I realized that my concept of a President's job has changed, and my current idea--that a President is, perforce, a leader rather than a policy-maker--is one of the reasons I support Barack Obama. Certainly, policy issues are important, and important to me. But no next President--not an Obama, nor a Clinton, nor a McCain--will be able to implement his or her policies without the support of Congress. Not even the most "experienced" President can enact a law. Those of us who want to see progressive policies implemented must work to ensure that we elect progressive legislators, and then be sure they know that we're expecting them to work on our behalf!

I was at the Obama rally in Madison last Tuesday. What most impressed me (other than the enthusiasm of the crowd) was his clear statement that we will change the political system only if we all work for change. I think he understands that he can propose policies, but he can't implement them without our help. But an engaged, active, electorate--energized and inspired by a true leader--can do almost anything. It's not at all clear to me that Hillary Clinton, for all her experience, has that kind of understanding of the political process. During her foray into the health care morass as First Lady, for example, she did (as I recall) very little to rally public support. And as a result, the well-financed (and apparently corrupt--check out what's happening in New York--see editorial in today's Times) insurance industry had its way.

Blog Sharing: Shortly after I wrote last week, a friend of a friend discovered my blog. She lives in Virginia and had just spent four hours helping to get out the vote for Obama. She asked if she could re-post my blog on other blogs. Of course, her email made my day! And she posted the blog entry on the Daily Kos and Obama's website, and sent copies (or maybe a link, I'm not sure) to about 25 friends. A big thank you to her, and to any of you who have shared any part of what I've written with other people.

Now, it's clear to me that politics is much more interesting to most people than death and cancer. But for those of you who are curious:

Health Update: I'm doing very well. The current chemo regime (oxalyplatin every other Thursday) seems to be working; I've outlived my prognosis and am growing stronger every day, thanks to a combination of whey protein and strength training at the gym. (Those body- builders apparently know what they're doing! But no, no anabolic steroids for me.) My breathing is much improved since the fall, though I'm not up to skiing or, as I noted a couple of weeks ago, swimming. If the snow would ever stop falling, and what's on the ground would melt, I'd try biking on the bike path, though!

The next CT scan won't be for a month or two. Dr. Holen, my oncologist, explained that patients sometimes develop an allergy to the contrast they infuse during the procedure, and the more times you're exposed to the contrast, the greater the probability of an allergic reaction. Besides, what matters, really, is the clinical evidence--that my breathing is better, my voice is no worse (and possibly better), and so forth. After all, the last CT scan I had, in September, looked pretty good. And less than a week later I woke in the middle of the night, unable to breathe, and it soon became clear that however small the tumors were, one or two of them were affecting crucial nerves. I think if (or when) the chemo stops working, it'll be clear to me and everyone else!

But I'm hoping that won't happen at least until I've had a chance to vote in November!

Jane Henkel, In Memoriam

Yesterday afternoon, while I was writing my "Ducks in a Row" post (see below), I learned that my good friend, Jane Henkel, died Tuesday night. Jane had liver cancer. If I remember correctly, she was 58 (and still working as a staff attorney for the Wisconsin legislature) when she was diagnosed. She was given two years to live. She way outlived the prognosis--she would have turned 66 on March 21.

Jane and her husband Jim were the first friends I made when we moved to Madison in 1976. Jim and my husband Steve had sailed together in high school, along with a third friend, Doug Tormey. The Tormeys also moved back to Madison that summer, and the three men bought an E-scow together and began winning many, many races. Jane, a consummate athlete, often sailed with them. (Was I jealous? Just guess! There is nothing quite as exhilarating as hiking out--leaning your whole body out of the boat, parallel to the water--on a sunny, breezy summer day, except maybe riding your bike downhill at 35 or 40 mph in western Dane County on a long and beautiful summer evening.)

When we realized that we were going to stay in Madison (we had come for a two-year post-doc) and bought a house on Sherman Avenue, with a backyard on Lake Mendota, the boat and the sailing program moved into our back yard. Jim and Jane were around virtually every weekend, and many Wednesday evenings, too, hanging out before and after races. And I couldn't begin to count the number of Friday evenings they came over for pizza and dominoes in those years. It was our regular Friday night entertainment. And the Henkels remained steadfast friends--to both Steve and me, and to our sons--through our divorce and afterward; of all our friends and acquaintances the only people able to accomplish this difficult feat.

Jane and I were in many ways very different. She was a quiet, private person, not interested in making the details of her disease and treatment public. She was extremely conversant with computers (during and after college she worked as a programmer at the UW Computer Center, and in the past seven years, she used the computer extensively to edit and make slide shows of her excellent flower photographs) but she would never have considered writing a blog! But she was my role model. Not only did she outlive a grim prognosis by many years, she understood that if you're alive, it's incumbent on you to live, and live fully.

After her diagnosis, between chemo treatments, she and Jim road biked through many (mountainous) countries in Europe, and skied and mountain-biked in Colorado and other western states. Jane continued to bike regularly on Wednesday nights until just a few years ago, when the combination of treatment and disease slowed her down too much to make the rides enjoyable. (But finally, I could keep up with her!) Still, she found other people to ride with on other days, and continued riding into last summer. After her retirement, she returned to playing music with others, as she had in high school, and began serious study of the recorder. (When I started taking cello lessons, we tried to play duets, but she was so much better than I that we had to give it up.) She attended recorder workshops and played in several glorious concerts in the Capitol rotunda. And she was a regular at the gym. The last time I saw her, in fact, was at our spinning (stationery bike) class last Wednesday. There was no way to know she would not be there on Monday, too.

Several people have offered me condolences today, and asked, concerned, how I feel. The truth is, I'm sad, but I feel pretty good. Even in death, Jane is a role model. I realize, now, that the end of life isn't necessarily the bed-ridden weeks, surrounded by long-faced family and friends, that I have imagined. It could be as short as three days. Because as Jane knew, you have to live until you die.