Wednesday, September 27, 2006

Day 36: Betweenness, good news, and your letters

Hi, all. Sorry it’s been so long—over a week!—since I’ve written. Today is Day 35 post-transplant—so I’m now five weeks old!—and everything seems to be going well. My blood counts were very good yesterday—red blood 11.7, overall white count 5.0, Absolute Neutrophil count 3.04, platelets 65 (still low, but no change from Friday, meaning that the continuing drop-off from 251, the first post-engraftment high, may finally have leveled off as we’d been hoping), and the electrolytes, etc., are good, too. I’ve started exercising three days a week in the Rehab Services gym on the first floor of the hospital—feels great to be physically tired in that way again! Even though it’s depressing to realize how little strength I have. I got a great massage last week and have two more scheduled for this week, though today’s may get bumped off the calendar because of a schedule conflict with my appointment at the Ambulatory Treatment Center. I’ve called to find out if I can just bring my IV pole with me and still have the massage—that’s what I do when I go to the gym, so it should work. [News flash! Bringing the IV pole is fine…]

I’m even doing well enough so that they’ve started to modify my schedule in the ATC. The first week out of the hospital I went to the ATC every day for 3-4 hours, including Saturday and Sunday (which was in a different location in the same building). Last week I changed the schedule to mornings and went Monday-Friday; then they gave us the weekend “off” for good behavior (that is, good blood count behavior). That meant that on Friday they gave Anna a quick demo of how to connect the IV bag to a home pump and how to connect another set of tubing from the pump to one of the lumens in my catheter and sent us home. Went fine on Saturday, but the other IV bag developed a leak in the fridge overnight, so we ended up trudging over to the ATC Bed Unit on the 2d floor to get another bag and double-check the procedure. Then we came home, Anna plugged it all in, and we went to lunch at a very good Mexican-Guatemalan place over in Montrose, which Anna had found in Zagat with her usual unerring eye. Then we came home again and I rested and read, IV pumping away, while Anna and Bill Morgan, a BodyChoir friend with whom we’d been having a great visit during the weekend, went to the Continental Club to see what turned out to be a spectacular show in connection with a book-signing party for a new book called Texas Zydeco. They came home a couple hours later, happy and exhausted, having gotten just what the doctor ordered—a dose of great live music and dancing (they said they danced on the sidelines, since there were so many people there who really knew how to move their feet to that Zydeco beat). I’d have loved to go, but being in that kind of space is exactly what the doctor has ordered me (and all other post-BMT patients) not to do, so…

Just as well. Resting felt like the right thing to do. I’d had something of an upset stomach on Saturday—due, I suspect, to having taken my magnesium tablet without enough food in my stomach to handle it, something that Andy, the PharmD, had warned about, and though my stomach was much better on Sunday (witness how I snarfed down those fine grilled-snapper tacos and a cup of black beans at the restaurant I mentioned above!) I didn’t want to push too hard.

So I stayed home and listened to the first part of the first volume of Shelby Foote’s monumental history of the US Civil War, as a follow-on to (or filler-in for?) Doris Kearns Goodwin’s Team of Rivals, a biography of Lincoln that I found fascinating but disappointing. That had been preceded by much lighter fare, Calvin Trillin’s Tales from the Tummy Trilogy, a collection of food-pieces written for The New Yorker over a period of many years; most of those essays made me want to travel and eat… I needed a funny book about food after reading a very dry (and mercifully short) book about Moses Maimonides’ place in the history of philosophy, from which I learned some fascinating things about the complexity of the relationships between the Jewish and Islamic intellectual and spiritual worlds in the twelfth and early thirteenth centuries—I would very much like to know more about that, especially about Cordoba, Cairo, and Baghdad as centers of Jewish life during that period!—but the book just wasn’t what I wanted right then: I was looking for a different kind of Guide to the Perplexed, just as I had evidently been looking for something less austere than the Dalai Lama’s How to Practice. John Krakauer’s Into Thin Air, his book about a disastrous 1996 expedition to climb Mt. Everest, was more my speed, as (so far) is Foote’s Civil War narrative: books about people facing extraordinarily difficult situations, yet books that aren’t themselves difficult to read (except for the horrific things they talk about).

Bear with me. This is going somewhere, I think. I’ve been feeling a sort of malaise since leaving the hospital (maybe not on the national scale Jimmy Carter talked about from the Oval Office all those years ago, though who knows?), and feeling guilty about feeling the malaise. I should be happy to be out of the hospital! I am happy to be out of the hospital! In fact I’m delighted. But there’s this malaise, and the guilty feeling that I shouldn’t be feeling malaise. And I’ve been having a hard time figuring it out. Summarizing the reading list helps me see something,  maybe: I am drawn to books about people in appallingly difficult circumstances (the Everest climbers, Lincoln, the Dalai Lama, the Civil War combatants; we can leave Calvin Trillin out of this for now, though perhaps he’s on the list not only because I wanted something light and I knew I would enjoy his work, but also because I was aware that the loss of his wife, Alice, who figures so prominently in these writings, had been a terrible blow to him). They all in some sense “signed up” for difficulty: Lincoln wanted to be President, Krakauer wanted to climb that mountain, the Dalai Lama wants to break free of the cycle of life and death while leading his people and the entire world toward peace, those who joined the fight wanted to do something to serve what they perceived as their country, etc.). And in each case it seems that what was required was both a capacity for extraordinary action, perhaps over a protracted period, and a capacity for extraordinary patience, perhaps over an even more extended period—waiting out terrible storms on Mt. Everest, waiting out political vicissitudes, waiting out the ebb and flow of news from the battlefronts before choosing a course of action to meet a challenge that no longer had the same form.

This calls to me. Anna and I had prepared (oh, how we prepared!) for the hospital stay. We were ready. We had been in hospitals before for extended stays. We knew what that was like, and we thought we could apply the knowledge to the situation here at MD Anderson, too—hence Anna’s wonderful effort to make the room a place of beauty and comfort and celebration. And it worked! We pretty much sailed though those weeks and days, though there were moments of frustration and surprise, usually occasioned by how easy it was turning out to be. Did that mean something was wrong? Of course it didn’t mean that at all: “It doesn’t have to be hard,” said someone on the medical team. Ah.

But we weren’t prepared—or at least I wasn’t prepared—for this: betwixt and between. Not the hospital, true. But not home, either: also true. Between the two. Limbo. A Place of … Waiting (Sorry, inside joke on the name of the Place … of Wellness, where I’ll be going for my massage this afternoon). But representing it to myself that way—as a place of waiting—feels wrong, too, feels like it drains the moment I’m in now and defers everything to the not-yet-established date when we pile into the car and head back to Austin (I’m hoping to get there in time for Thanksgiving!). That’s what I’m waiting for, longing for: I want to be in my house, in my city, with my friends and colleagues, in my office, in the places we know and love. And I know I’ll get there. But the task right now is to be here, at Rotary House, at M.D. Anderson, in Houston, getting well. It’s a time for patience, not for action. Or maybe it’s a time for patience so that action can take place inside me, deep inside, at cellular and sub-cellular levels, sub-microscopic levels. Last Thursday I had a bone marrow biopsy, the first since the transplant: besides finding out whether there’s any leukemia still lurking around (he takes a deep breath, crosses fingers and toes) they’ll also look at the actual DNA, to find out if it’s my old, pre-transplant DNA, or the new, post-transplant DNA: Peter’s! And yesterday, Monday, I had a lumbar puncture (performed once again by Sue, the artiste who made the process so painless back in May and June), to check the spinal fluid and instill a very small dose of cytarabine just in case. So maybe that’s where the action is, and my task now is to wait for it to play itself out, getting occasional telegrams from the front.

Off to the clinic. More later.

Update, Wednesday afternoon
I am you and you are me and we are all together… The final DNA results on the bone marrow aren’t in yet (Dr. Andersson says it will take 2 or 3 more days), but the bone marrow is “fine,” and he’s convinced, based on earlier checking of the DNA in my circulating blood, that my “old self is gone” and “the new self” is in place. In other words, Peter’s stem cells have engrafted, taken hold, and are producing new red and white cells and platelets! He says I couldn’t be doing any better at this stage, 36 days post transplant. And the CNS is clear, too—no leukemia!

Oh, man, I didn’t know till I wrote those words how afraid I’ve been. How I’ve been holding myself tight, waiting. No wonder I woke up tense and grumpy this morning.  What a relief it is to know (yet I scarcely believe) that that subcellular work has been going on. What a marvel this body is! And what amazing things it can do with expert medical help. And not to be taken for granted.

Everyone in the ATC is a bone marrow patient; everyone has a different story. Max, from Atlanta, sounds like he’s about my age; he’s doing very well—lots of energy, lots of movement, lots of determination. His wife of 28 years is with him now, but in a week or so she goes home to take care of things there, including a 15-year-old child, and Max’s brother will take over here in Houston. Then his sister will come, and then Linda (his wife) will come again). And so they keep it going. Jessie, an Indian woman who may also be about my age (hard to tell just from the voice), lives in Sugarland, about a 40-minute drive from here. She makes the round trip every day, which is exhausting. Her parents are here from India, helping out. She’s on her second transplant—the first one, she said, “didn’t work at all”—and she’s still having a hard time with this one. Frank is a young man from Louisiana; his transplant was successful, but it caused some kidney damage and he has to go to a different hospital every day where they have a hyperbaric chamber, a special, oxygen-rich environment; his mother, Rose, a lovely woman who shares Anna’s love of gospel music and thrift stores, is here taking care of him. But people do get to go home! This morning, in the waiting area, a young woman whose mother had been talking about her came up from the Lab (the waits down there were really long this morning) and talked happily about going home tomorrow, which will be something like Day 90 for her. And yesterday a whole bunch of nurses and other staff crowded into someone’s room down the hall and sang “Shah na na na, shah na na na, hey hey, you’re going home” to someone, with much joyful clapping of hands and stamping of feet; I joined in quietly from my chair, not wanting to intrude, thrilled for whoever it was and for myself, too. Shah na na na.

“Shah na na na” reminds me: last Friday night we went to the home of Hope Lipnick, the Jewish chaplain here at M.D. Anderson who’s been such a warm, comforting presence, to celebrate Rosh Hashanah, the beginning of the New Year, with her and her family and some of their old friends. It was lovely—it felt so good to be there, among people who’ve known and loved each other for a long time, who made us feel like we belonged. For Anna, it was a return to a part of Houston where many of her friends had lived when she was in high school; it reminded me of family dinners and of the times in college when I went home to Southfield with Ken Portnoy to celebrate the holidays. And I remembered last year’s Yom Kippur break-fast at Judith and George’s house in Austin, where the force of the prayer May my name be inscribed in the Book of Life for another year hit home. I am so, so thankful to have had that year. And now I ask for another one.

I wouldn’t have had that year without a lot of help from friends far and wide. You keep showing up in your amazing letters, so many and so rich and beautiful that I can’t possibly do justice to them here. Jeff Martin, who visited us in the hospital when he and Toni were in Houston several weeks ago, sent a thoughtful letter and a large, multi-faceted, heart-shaped crystal, surprisingly heavy in the hand. Brian Williams, another BodyChoir friend, sent a note and a CD containing a BodyChoir program that he and his wife Yvonne had put together and dedicated to me not long after we left for Houston; the music was fine, intense, intriguing. Rebecca and Sarah (our nieces in Albany) sent a second CD compilation, rich and surprising like the first one. Donnie Hamilton, also a friend from BodyChoir, sent a lovely card with a short, thoughtful note that began with the surprising and beautiful line,: Consider the sky.” He pointed out that the sky doesn’t have to do anything; it has only to be there: that’s my task now, too. Just be here.

Lisa Kimball, an expert in online community who shared a house with Anna and Judith Sokolow when they were all students at Sarah Lawrence, sent terrific CDs by Ray Charles and Eric Clapton, and a really funny, really soft stuffed frog; I don’t know why, but that frog reminds me of visiting Lisa and her husband John on Martha’s Vineyard and going kayaking, with Dillon riding between me and Anna in our two-seater, clearly thinking we were stark raving mad. Sara Kimball (no relation), who spends as much of August in Maine as she can each year, sent a lovely, thoughtful note about her garden and her beloved cats, and, a few days later, an emery board and a note about filing fingernails—“girl stuff” that I couldn’t be expected to know—in response to the post in which I complained about not being allowed to trim my nails. Vicki Almstrum, who teaches Computer Science at UT and who’s already done so much to help—organizing a bone marrow registration drive this past summer, raising money for the Leukemia-Lymphoma Society, and more—sent the program for an accessibility panel she chaired at an IEEE conference in Austin on which she had invited me to participate and which I’d had to decline (though she called me the day of the panel and asked me for thoughts she could share with the audience, a beautiful gesture; so I was there after all). Stunningly, her envelope also included a huge packet of get-well cards made by the first-, second-, and third-graders at her daughter Alicia’s school. They were incredibly touching—all the more so for being so completely unexpected.  Judy Ashcroft, another UT colleague with whom I’ve worked on many aspects of integrating technology and instruction over the years, including early drafts of what is now the University’s accessibility policy, sent a card festooned with all sorts of UT and Texas symbols and icons, and a collection of quotations that she’s found inspiring over the years. Taking a completely different tack, Gregg Vanderheiden, a great man in the world of accessible technology with whom I was privileged to serve as co-chair of the Web Content Accessibility Guidelines Working Group, sent a long, hilarious list of anagrams, starting with several formed from the letters of my name and including one that seemed especially apt and especially silly at the same time, transforming “dormitory” into “dirty room.”

Jennifer Jobst, a graduate student in the School of Information who spent a year at the Accessibility Institute and continues to work with us, sent a nice letter about her wedding (congratulations, Jen!), including a lovely quotation from Thomas a Kempis that had been read at the ceremony in Quebec City; she also sent a very nice CD of Celtic songs, haunting and soothing. Susan Romano, who worked in the Computer Writing and Research Lab in the early days and from whom I learned a lot about all the things I was assuming and not stating, and who has had her own health difficulties the last few years (she teaches at the University of New Mexico in Albuquerque), sent a note and a long, winding poem by David Wu that I find difficult to summarize; maybe it would work to say that it’s about facing death and going into oneself, about some of the possible attitudes and stances one could take toward death.

From John Ruszkiewicz, with whom I’ve taught and argued and collaborated since I came to UT in 1979 (he got there two years earlier) sent an extraordinary, moving note describing a gift that he has waiting for me in Austin: an antique spur, purchased in Marathon, in West Texas (a region he loves), heavy and rusted. He says he’ll keep it on his desk till I get back, asking each person who comes in to turn the rowel (the pointed wheel), which apparently is not easy. A substantial metaphor indeed. I’ll be very glad to lay hands on it.

And there was another extraordinary letter, this one from Bill Nemir, whom I first met in Baltimore in the spring of 1975 and who introduced me to Anna in Austin in the winter of 1982. It began with an image from graduate school days, a wonderfully vivid sketch of my dissertation director and mentor, the late Hugh Kenner, speaking to the class. Then followed a quotation from one of Kenner’s books, The Stoic Comedians, about the way the relationship of print to the spoken word has changed since World War II, followed by an invitation to me to continue the thread, to talk about what’s happened the interplay of text and voice in more recent years. I can’t do that right now, but it’s a wonderful question, and I look forward to long conversations over good food and good wine.

But now it’s getting late, and I have to be at the Lab for blood draw at 6:30 tomorrow morning. I’d better turn in. Good night, all. I love you.


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