Monday, March 31, 2008

Chicago: "Carousel," Church, Courage

This past weekend, Jed and I went to Chicago. The idea for the trip was his. The evening before Easter Sunday, he said he had a "wild and crazy" idea. "How'd you like to go to church tomorrow?"

"Not at all," I said.

His idea, as it turned out, was to go to services at Trinity United Church of Christ in south Chicago, the church Barack Obama sometimes attends, where Rev. Jeremiah Wright is now senior pastor. I said I had other plans for Easter Sunday (going to a movie with a friend), but I thought it would be fun to go to Chicago, and interesting to attend a service at Trinity.

So Saturday afternoon we headed south; met my writing friend Anne-Marie for a wonderful dinner at Topalabampo; went to a good, somewhat minimalist revival of the 1946 musical, "Carousel," at the University of Chicago's Court Theater. I was surprised by how many words of those old songs I knew. (I'd had the same experience earlier in the month at a revue of Irving Berlin songs. I think it has to do with growing up in the 1950s, when all that music was on the radio, and also with music classes in elementary school, when we sang lots of songs, many either popular or patriotic.)

Of course, the most moving of the "Carousel" songs, especially for me, is "When You Walk Through a Storm." And that's really the theme of the show (it having been written just at the end of WWII): "When you walk through a storm/hold your head up high/And don't be afraid of the dark./At the end of the road is a golden sky/and the sweet silver song of a lark//Walk on, walk on, with hope in your heart/and you'll never walk alone...."

What was interesting, was that this was also one of the themes of Sunday morning's service at Trinity, which has certainly been at the center of a storm recently. (As we were entering the church, a woman looked at us and said, "It's so nice to finally be going to church without all those TV cameras!") I had thought of our visit as similar to the visits I used to make to churches of various denominations when I was in high school, with others in the American Friends Service Committee youth program: something interesting to do. But it was immediately obvious that we--and other visitors--were really there as supporters of a beleaguered congregation, and we were very warmly welcomed.

The service was joyous, full of music and choreographed dancing by the "dance ministry" group of young people. Yesterday happened to be Youth Sunday; the youth choir sang, many members wearing really colorful African dress; and much of the service was led by young people. A high school senior, Anita Pennington, gave the sermon, which was about "persistence and consistence" in action, faith, and prayer. She was a powerful speaker, especially when she was talking about being persistent and consistent in "fighting for justice and fighting for our rights." She talked about the way Martin Luther King continued his pursuit of racial equality and justice even when his life was threatened, but she also referred to the inspiring persistence and consistency of King's widow, the widow of Malcolm X, and the mother of murdered 14-year-old Emmett Till in working for civil rights even after their devastating losses. The implication was clear: Trinity's members must continue on their path despite the storm of publicity and attacks on Rev. Wright, and the (politically necessary) less-than-fervid endorsement of Wright by Barack Obama. I'm not sure anyone at the church mentioned the word "courage," but it was really a service devoted to courage and hope. I think there must have been a thousand or more people in attendance--every seat in every pew was filled, and there were people standing along the back wall, as well as people in an overflow room somewhere, watching on video--and for sure, all those people were walking through the storm with their heads held high. They are black, and they are proud: of Jeremiah Wright, of their church, and of themselves.

The church bulletin included a fascinating and well-written defense of Wright by Tim Wise, a white man, the author of a memoir, White Like Me, and "among the most respected anti-racist writers and educators in the US." You can read the essay, "Of National Lies and Racial Amnesia: Jeremiah Wright, Barack Obama, and the Audacity of Truth," on Wise's web site: Just click on the essays archive.

On other subjects: next Monday, I'll give you a report on the CT scan I get this Friday. And I promise those who've asked that I will put up some pictures of the calligraphed tunic (see the last post, if you don't know what this is) as soon as I get a chance. Also--to those of you who do comment and wonder why I haven't responded: I don't get the email addresses of commenters. So if you want a response, please, please, send me an email with your address! But don't stop commenting! Thanks...

Monday, March 24, 2008

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!

Monday, March 17, 2008

Advocating for Single-Payer Insurance

Early last week, I happened to be driving into my garage, half-listening to WHA, our local public radio station, when Larry Meiller, host of one of the talk shows, announced his guest for the hour. It was Kyle Holen, my oncologist; they were going to talk about the relationship between drug companies and doctors. Of course, I was interested, and as soon as I got into the house, I turned the radio on.

Now, I don't discuss politics during my doctors' appointments. (How many people do?) So I was more than mildly surprised, when a caller asked Dr. Holen why drugs are so expensive, and he replied, "Because in this country, unlike Canada, there are no cost controls." He'd just explained that oxalyplatin, the drug I happen to be on, costs $14,000 a month. I already knew this (as I mentioned in an earlier blog post), but what I didn't know is that oxalyplatin is, at least for Dr. Holen, the drug of first choice for colon cancer patients. There are oodles more cases of colon cancer than stomach cancer in the United States, and $14,000/month treatments for all of those patients must be a hefty contribution to the overall cost of health care, or at least of cancer care.

Dr. Holen went on to explain that in countries with single-payer health care systems, the single payer--that is, the government--is able to use its buying power to negotiate drug prices with the drug companies. Here, however, there are so many clinics, pharmacies, and insurance companies that no one has the power to negotiate prices--and the difficulty of getting all these players to work together and coordinate some sort of price negotiation is pretty much insurmountable.

I would have been thrilled to hear any doctor say this on public radio, but I was particularly pleased that it was my doctor advocating a single-payer health care system. I already liked the guy--he has, after all, kept me alive for three years--but this was extraordinary. A doctor who not only has good (by my standards) politics, but is willing to go public with his opinions!

And then someone else called in to ask if it was true that doctors get all sorts of freebies from drug sales reps. Yes, Dr. Holen said, although he added that he was careful not to accept so much as a pencil from a drug company. He made it clear that even though many doctors insist that free trips and free lunches don't influence their prescription practices, this was unlikely. Why would drug companies spend many millions on this sales technique, if it was ineffective? Dr. Holen described a clinic (outside Madison) where he sees patients once a month or so. At this clinic, lunch is provided daily by drug companies! On the days he's there, however, the other staff has agreed to have a potluck. "I like to think that some day they'll decide to have potlucks even when I'm not there," he said.

As a follow-up, a listener called in to suggest that people might be interested in looking at a website: I hadn't heard of the organization, which is focused on breaking physicians' "drug company dependence" by providing arguments and evidence for the link between freebies (including free drug samples) and prescription practices. But Dr. Holen had, and said he contributed to the organization; and then he suggested people might also like to look at the site for Physicians for a National Health Program ( PNHP advocates for a universal, single-payer health care system.

These are both great sites. And if you're in Wisconsin, you might want to check out the site of the Coalition for Wisconsin Health,, an organization for which I volunteer. CWH is an affiliate of PNHP; its long-term goal is a single-payer system, but the coalition of over 60 health and social justice organizations understands that this goal may have to be achieved through small, shorter-term, steps, and it has been a strong advocate for the Healthy Wisconsin plan presented by Democrats in the state legislature in the past year.

CWH is also beginning a new state-wide project, Share Your Story. We're hoping that people with horror stories about health insurance, and also with good stories about the benefits of government programs like Badger Care (in Wisconsin) and Medicaid, will let us know that they're willing to take their stories public through the media. We'll interview these people, get their stories, and create a data base that can be accessed by reporters state-wide who are looking for real people with a personal interest in the health care policy debate. If you happen to know of Wisconsin residents with stories to tell, let me know, and I'll pass the information along!

And I really encourage all you readers to comment on, or ask questions about, the economics and politics of single-payer health insurance.

Monday, March 10, 2008


This past week, I discovered a new way of thinking about my health: assessing my desire to get out of town! Last October, when I was having a lot of trouble breathing, and more trouble than I now have just talking--when I was spending so much time in various clinics that I felt like a professional patient--I decided that leaving Madison for a few days a month was really essential. It made me feel much better to be someplace where I had no doctors' appointments, and where I could at least pretend that I was "normal," not a sickie. So I plotted my escapes, and made them--to DC and Boston, Zion National Park and Los Angeles, the Virgin Islands, Arizona....

But this past week, when I was thinking about another trip east in early April, I realized I'd done enough traveling. The trips themselves have all been great, but each one requires at least a few days of getting ready to go and then catching up on mail, email, errands, etc. when I get back. And I realized that I've been out of town at least five days a month every month since August. (And although I think I was here most of July, I know I was gone for at least five days each last June, May, April....) When I added all that time up, combined with the preparation and catching up times, and took into account the four days/month I'm pretty much out of commission because of chemotherapy, it suddenly became clear why I never get anything accomplished around here! And as my energy slowly returns, I really do have the desire to accomplish something (though I couldn't say what, other than organizing some files and writing some dates in photo albums) rather than be on perpetual vacation! So I take it as a sign of good health that I don't want to go anywhere, at least until the end of May, when Robin Chapman and I will be teaching our class at The Clearing in Door County.

Of course, it could just be a sign that winter seems to be losing its relentless grip, and the temperatures in Madison this week are predicted to go into the high 30s, and maybe even 40s!

And on March 21, after my next CT scan, Dr. Holen and I will figure out if I can take a vacation from chemo this summer, and when-- and you may be sure that if I'm let off of that tether, I won't be hanging around here for the entire time!

In the meantime, I'm happy just to stay in Madison and watch the snow and ice gradually disappear.

Tuesday, March 4, 2008


I came back from Arizona last night, just to see if there was still snow on the ground in Wisconsin, and sure enough, there it was. I have to confess that I signed up for the equine retreat at Sunstone, a healing center for cancer survivors on the edge of Tucson, mostly because of the weather. When I left Madison on Wednesday, it was 10 degrees Fahrenheit. And the first full day in Arizona, basking in the sun and even seeking shade when the afternoon temperature climbed toward 80, I started thinking that maybe I really should move someplace warm. Not Arizona, but maybe LA? Not a very practical or sensible idea, but oh, so tempting.

I discovered, though, flying back yesterday that even I can't live someplace for 31 years without getting attached to it. The sky was clear as we flew over Minnesota and approached the Mississippi River, which we crossed right at the confluence with the Wisconsin River. There was (of course) snow on the ground, and because it was late afternoon, the shadows really defined the topography. We paralleled the Wisconsin, heading east, until it took off to the north, and then we flew over all three of Madison's lakes, as well as the isthmus with the state capitol dome shining gold in the setting sun--it was a spectacular flight. And as soon as we crossed the Mississippi, the refrain from an old song, "The Wisconsin That I Love," came, unbidden, into my head, and played over and over until we landed. I guess I won't be moving.

But as a result of the weekend at Sunstone, I hope to be adding two activities to my schedule: returning to a qi gong class, and doing something with horses, perhaps volunteering at a nearby stable that offers equine therapy to people with disabilities. I discovered that I love to be near horses, and would love to learn to work with them, discovering more about how they sense people's energy, and how I can use my energy to make them respond as I wish.

If there was a theme to the retreat, I think it could be described as "intention." We didn't ride the horses (because of liability issues), but performed several exercises with them, learning how to make them turn left and right without touching them, how to get them to jump over a low barrier and to walk over a pipe lying on the ground, how to get them to move to the rail of the round pen and then walk, trot, and lope (gallop) in a particular direction around the pen (clockwise or counter-clockwise), always signaling our intent by changing the size and direction of our "energy bubble." At the end of this last exercise, we stood in the middle of the pen, calmed ourselves down and quieted our energy, which attracted the horse, because horses, being prey animals, like calm places. I was really good at this (it's a lot easier for me to be calm than to make my energy large and compelling enough to get the horse to lope) and the horse, whose name was Romeo, came right up to me and put his head on my shoulder and relaxed. I fell immediately in love. Makes me feel like a 12-year-old girl!

The equine exercises were especially emotional for several participants, some of whom had spent a lot of time with horses, or with a horse they owned, as young people, and who were suddenly put back in touch with their younger selves, whom they'd abandoned or forgotten, and for others who were afraid of horses, and discovered that they really could face and even draw hope and have affection for and control something much bigger than themselves. (Yes, the horse in those cases was a clear metaphor for cancer.) I haven't had much previous experience with horses--I rode with a friend several times in the year or two after I graduated from college, and I horse-packed into the Tetons with my kids and my sister Paula in 1987--and I'm not afraid of horses. Also, I haven't had much problem with intention since the mid-1980s, after I completed treatment for Hodgkin's disease and determined (after a lot of agonizing) to leave my marriage. But I still felt the exercises as powerful; I enjoyed learning to manipulate my energy field; and I wanted much more of that sort of experience.

The retreat also included short introductions to various kinds of meditation and relaxation techniques and to cognitive therapy as a technique for quelling anxiety, a session on nutrition offered by an excellent nutritionist, a qi gong session, and delicious meals with opportunities to get to know the other participants, all of whom were either cancer survivors or their caretakers (including two spouses and one sister of survivors). I made friends with several participants with whom I hope to stay in email touch, and I was especially impressed by the retreat coordinator, Erin Blanchette, who is the best facilitator of anything I've ever met.

The only real down-side to the weekend was learning that our retreat is the last Sunstone will offer. The facility, which is quite beautiful and extensive, on 14 acres, is about to go up for sale. Sunstone runs four or five resource centers for cancer patients and survivors; these are mostly, I think, in hospitals in the Tucson area, and they serve thousands of people each year. The retreat center served, at most, 500 people a year, and was extremely expensive to operate and maintain, so the board decided in late February to close the retreat center and concentrate on the resource centers. The retreat center was run entirely on contributions, and as Erin explained, it has proven very difficult to convince funders that care for the emotional and spiritual needs of cancer patients and survivors is as important as chemotherapy, radiation, or surgery. The oncology community is beginning to come around to this idea; at UW Hospital, for example, I see a physician who specializes in integrative medicine and who works out of the oncology clinic one day each week; I also see an acupuncturist (who is a naturopathic doctor) at the clinic. But I think there are relatively few oncologists like Allan Hamilton, the neurosurgeon who owns Rancho Bosque and runs the equine therapy program with his wife Jane, a psychologist, who really embrace and practice "alternative" and "complementary" modalities along with traditional Western medicine. And as far as funding goes-- research into the sexy and high-profile diseases like breast and prostate cancer attracts the big bucks.

Well-- speaking of alternative therapies, time for me to go to my Feldenkrais class. More next week.