Monday, May 26, 2008


As I write this, I am eating breakfast and hoping it will take only another hour to write this post and get the car packed, the garbage tossed, the dishwasher emptied and reloaded...etc, so I can head out to pick up Robin and point the car north to Ellison Bay and The Clearing for Poetry Camp. (We'll drop Jed, who's been here for two weeks at the UW Memorial Union to catch the bus to O'Hare.)

But when the message is posted, tomorrow, I will be trying to write poems, along with our Poetry Camp participants. Robin and I do the exercises--in fact the last poems I wrote, none of them worth even revising, were last year's exercises. I haven't written poetry in a year; haven't even wanted to.

The last good poems I wrote, collected in a manuscript, "Limited Warranty," have spent the past year or more trying to get published, to no avail. One or two have made it into journals, but the rest just collect rejections--one in the past week from a press that specifically wanted poems about illness. It's been, to say the least, discouraging.

I have an idea of why no one wants to publish these poems, most of which I wrote in a rush in the months after I learned that my cancer spread. People's reactions to any writing--fiction, nonfiction, poetry--is based largely on their ability or desire to identify with the subject, or with a character. For example, a woman who has chosen to stay with her husband rather than pursue a true(r) love may be blown away by the currently popular novel, Loving Frank. Mamie, Frank Lloyd Wright's second wife and the protagonist of the novel, represents the life not chosen--wild, romantic, risky.... A reader who hasn't had an affair, or hasn't considered leaving her husband and children in pursuit of true love, may find the novel a good read, but nothing special.

And most people really resist identifying with someone who's destined to die, and soon. No one wants to confront their own mortality, in poetry or anyplace else. So some editors tell me they find my poems "very moving" and "fine writing" -- but they're not interested in publishing what they, or their readers, may perceive as a downer. (And one manuscript screener, very young by the look of her handwriting and the tenor of her comment, wrote "Thank you for giving poetic voice to your experience," which I have a hard time accepting as anything other than thinly-veiled disdain .)

So, since my subject is often death, and what everyone from Oprah to journal editors and poetry contest judges prefer is recovery, I feel as though writing and sending out poems is a colossal waste of time. Better to write the blog, which is there for the people who know me, and are therefore interested, or who find their way to the writing through the magic of the internet.

Where would I be without cyberspace?

And now, I'd better get to the dishwasher!

Monday, May 19, 2008

Busy Days.... busy, in fact, that the week has gone by without my thinking very much about the blog, or what to write today! I've been really focused on the book manuscript, Facing Fear, trying to tie up the final revisions before I leave next Sunday for a week in Door County. Every day, I go through a chapter, trying to make the format uniform and--most tedious--converting the cryptic footnotes into some sort of coherent listing of sources that will appear at the end of the book. I've assigned myself a chapter a day, and today I finished the next-to-last piece. All that's left is the epilogue, the page of guidelines for confronting fear and anxiety (self-help condensed, is the way I think of that page), and the acknowledgments. And then printing out about 250 pages. Maybe I can do all that tomorrow afternoon; maybe it'll slop over to Wednesday. At any rate, I think I will be ready to take the manuscript to Kinko's on Thursday. And then I can turn my attention to getting ready for the poetry class (we call it Poetry Camp) that Robin Chapman and I teach at The Clearing in Door County.

What else have I been doing? Jed arrived Monday evening (a week ago), and Nazgol, his significant other, flew in from LA on Thursday night and left this afternoon. So I've been playing with them in the afternoons and evenings. Fortunately, I guess, the chemo I got on Thursday didn't include oxalyplatin, so I bounced back quickly, and was pretty much fine by Friday. We went walking in the UW Arboretum to see the glorious crab apples and lilacs, and on Satrurdy drove all over southwest Wisconsin, it seemed, on back roads--taking the Merrimac Ferry (free, cable-pulled across the Wisconsin River, one of my favorite parts of the state) to go to the International Crane Foundation and a nearby, sort of, natural area, before heading to a fine potluck celebration of a friend's 60th birthday. Yesterday, I went to a graduation party for Pasha Sternberg, who immigrated with his family from the USSR as a 5-year-old seventeen years ago. Amazing to see kids grow into fine young people, especially since I don't feel any older than I did in 1991.

And I've been busy planning trips for the summer-- to DC for fireworks on the 4th of July, and up to the Boundary Waters in August with both my sons and their girlfriends, a trip that I will combine with participation (I hope!) in a Dragon Boat regatta in Superior, Wisconsin. I've signed on with TeamSurvivor, a group of women cancer survivors who do all sorts of exercise, for their paddling sessions on Wednesday evenings. Can't wait to get out on the water, although it won't happen this week, when I have a meeting of another group, or next, when I'll be at Poetry Camp.

Speaking of next week-- I'm going to try an experiment, made possible recently by Blogger, the Google program that hosts thousands of blogs, including this one. I won't have my computer with me up north, but I will be able to write a blog post before I leave Madison, to be automatically posted next Monday. So you'll have something to read even though I'm far from cyberspace, solidly planted in the real world, amid the trillium and maybe even yellow lady slippers.

Monday, May 12, 2008

Visit to Trinity UCC Church

Yesterday's trip to Trinity United Church of Christ in Chicago was quite wonderful. Fourteen of us went, many from Congregation Sha'arei Shamayim (CSS), the Reconstructionist Jewish congregation of which I am a member. (The bus driver and his wife also joined us. They didn't even realize that it was Obama's/Wright's church until they were inside--and they really liked the service.)

I couldn't have organized the trip without the help and support of many people, including CSS administrative assistant Jim Manos, who made many phone calls for me to bus companies and to a restaurant we stopped at for lunch, Rabbi Laurie Zimmerman, and several friends and acquaintances, including Bacia Edelman and Judy Klehr, who helped promote the trip to people they knew. Several people who could not make the trip for various reasons (illness, Mother's Day commitments, and so forth) sent checks to help pay for the charter and make seats available to people who could not afford the fare.

The trip generated some wonderful publicity, including a conversation on last Tuesday's "Eight o' Clock Buzz" on WORT, our community radio station, between Norm Stockwell and host Stan Woodard, and a really good article in the May 7 Capital Times by Judith Davidoff, which you can access at I know it also generated a lot of discussion (dare I say argument?) between friends, spouses, and acquaintances. I couldn't have imagined better consequences!

We were warmly greeted by the church, and our presence was noted from the pulpit. The service itself was incredible, and quite different from the Youth Sunday service that Jed and I attended in late March. This was a full-out regular service, with the adult choir, which must have nearly a hundred members, singing almost throughout the service, accompanied by organ, electric guitar, and drum set. Rev. Otis Moss, James Wright's successor as pastor, led the service and gave the sermon. He's an amazing orator, and the organist accompanied him with little riffs as he built, again and again, to a peak of excitement and exhortation.

At one level, the service could be seen as purely religious, though clearly that strain of Christianity that emphasizes Jesus's compassion for the poor and unfortunate and insists that we emulate it. At another level, there were clear (to me, anyway) though implicit references to current political events. For example, a responsive reading reiterated the statement, "Divine love does not ask family to choose between family members." The minister was explicit about the inclusive nature of this statement: "Beloved, we love W.E.B. DuBois and Booker T. Washington. We love Marcus Garvey and Ida B. Wells. We love A. Philip Randolph and Bayard Rustin. We love Ella Baker and Angela Davis. We love Martin Luther King, Jr. and Stokely Carmichael." And a little later in the litany: "Beloved, we love Ishmael aned Isaac. We love Jacob and Esau. We love Moses and Aaron." He never said "We love Rev. Wright and Barack Obama," but the importance of not choosing between even these "family members" driven apart by politics and media was clear.

The sermon, also, was effective on multiple levels. On the surface, it was exegesis of the week's scripture reading, Luke, chapter 7, verses 36-49. In these verses, a Pharisee, Simon, invites Jesus to have dinner with him. A prostitute enters the house without being asked, and washes Jesus's feet with her tears, dries them with her hair, kisses them repeatedly, and anoints them with balm or perfume. Simon is appalled. If Jesus knew she was a prostitute, he says to himself, he wouldn't allow this. (Rev. Moss said, in an aside, "Now how would Simon know who this woman was, unless he'd been hanging around the red light district himself?") Jesus tells Simon a story to emphasize how much more important forgiveness is, for someone who has many sins, and he forgives the prostitute's sins, wiping the slate clean, so to speak, so she can begin a new life.

At the beginning of the sermon, partly I think because it was Mother's Day, Rev. Moss emphasized the righteousness of women, and the difficulty they had in being ordained by the men who governed the churches (including UCC), even though they had clearly been "ordained by God." It was a very feminist and also, in parts, very funny introduction, praising women (like the prostitute) who did not know their place, and refused to accept other people's definition of who they were. It introduced one of the themes that ran through the whole sermon: do not let other people define you. Rev. Moss focused, later, on how important this was in the black community, especially for black youth, so often defined in negative stereotypes by the media, the school system, the police and the courts. As he pointed out, "If I can dismiss your pain [by defining you as a "bad person"], I don't have to act [to change society or correct injustices]."

The second main theme of the sermon, picking up on Jesus's forgiveness, wiping the slate clean, was that we, too, should forgive past sins and look to the present and the future. Again, Rev. Moss focused the congregation's attention on black youth, suggesting that what should matter is what a young person is doing now, and what he or she will do in the future, not his or her past grades, or drug use, or misbehavior. He pointed out that even Richard Nixon was spared certain punishment by Rosemary Woods' judicious use of the "delete" button, and noted that "God does not want a resume of yesterday; doesn't care about the stereotype people have of you.... Jesus doesn't see every negative thing.... If God doesn't look back, why should we?" So use that delete button!

Not everyone in our group agreed, but several of us saw the sermon as (among other things) an extended metaphor about Rev. Wright, and the way he has been defined and stereotyped by others--and particularly by those who don't want to act to correct the problems in the black community, and in the US, that Wright has spent his career addressing. (And I'm not referring to the spread of AIDS by the government. Or his alleged anti-Semitism.)

It was really a masterful sermon, I thought, because it was so rich in meaning, and in levels of meaning. And I have to say, it was some of the best theater I've ever seen! Truly, the whole day was wonderful.

And now i'm off to the Arboretum, where I think the fruit trees are in full bloom.

Monday, May 5, 2008

Balancing Acts, Faith, and Denial

When I saw my oncologist last Thursday, he decided to take me off oxalyplatin, one of three chemo agents I've been getting, because my neuropathy--numbness in both feet and hands--has been getting significantly worse. In truth, it had occurred to me to cry "uncle" to him, not just because of the neuropathy, but because it's been taking me longer and longer to bounce back from each chemo treatment. But all I had to say was that I'd been dropping things (like half a can of Coke in a hospital elevator--what a mess!) and having a little trouble with zippers, and that was enough for him to decide to keep me on the leucovorin and 5FU, but take me off the oxalyplatin, which is what causes the neuropathy. The problem is that the neuropathy can become permanent, if it goes on too long. Not a pleasant prospect.

Of course, this is a two-edged sword, because the oxalyplatin has clearly been working on the tumors. "Well," Dr. Holen said, "we don't know that for sure. Maybe it's the leucovorin and 5 FU that's been working." Right. But if I have an oxalyplatin holiday, they can always start it up again if, or when, the tumors resume growing. I'll have a CT scan sometime in June, before I start the promised two-month vacation from all chemo.

Meanwhile, without the oxalyplatin, I bounced right back from chemo this week--no nausea, not much fatigue. It was a definite, and pleasant, change from the past two or three chemo infusions. So now I just have to have faith that the tumors have been beaten back enough that they'll lie low for a while. Or maybe what I have to do is just ignore, for now, the possibility that without the oxalyplatin, they'll grow back. We call this denial. Which is not to say it's a bad thing to do.

The experience mirrored, in a way, the balancing act involved in organizing Sunday's trip to Trinity UCC. People who had expressed interest in the trip started questioning the decision to go as soon as Rev. Wright's media exposure began. But the responses ranged from "don't go"--expressed quite well by Fred B in his comment on last week's blog post--to "I would be even more interested in the trip if Rev. Wright were going to be preaching." And I had already chartered the bus. So what to do? How to balance the "go" and "don't go" arguments?

Since I never intended the trip to be an endorsement of Rev. Wright or Barack Obama, much less Louis Farrakhan, but had been clear from the beginning that I wanted to bring people to Trinity to express support for the congregation itself, I decided to go ahead with the trip. I had to have faith that people would understand the rationale for the visit, whether or not they agreed with it--and to practice a little denial, too, about the likelihood that people wouldn't understand. I explained my motivation aned intent to everyone who asked--including a reporter who's doing a story about the trip in this week's Capital Times (now, sadly, a weekly rather than daily paper). No one canceled his or her reservation, and at the moment, it looks like at least 16 of the 29 seats on the bus will be full. Maybe more. I'll report on the experience next Monday.

Meanwhile, I came across a quotation in an article about the psychological challenges of living with chronic cancer that gives another perspective on balancing acts. The article (which was in an online journal called cureextra) quotes Steven Passik, a psychologist at Memorial Sloan-Kettering Cancer Center in New York. Passik points out that living with chronic cancer requires perspective-taking.and compartmentalizing. "Suddenly, you want to live every moment of every day. But this is just not possible. You can't live in the moment all of the time. You need to cultivate being involved in life with enough denial to put the cancer at arm's length."

Precisely. And it's good practice for all the balancing acts of life.