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.

Day 26: Dillon's back!

Dillon’s back! He flew in with Ledia last night on a Continental non-stop from San Francisco (Dan and Diann had dropped him off at her house in the Mission District earlier in the day), and they got to Rotary House about 9:00 PM. I’m just delighted he’s here. I was so excited when Ledia called me from the airport to say they’d landed safe and sound I couldn’t stop crying for the sheer joy and relief of it; I left a message on Dan and Diann’s home phone, but as soon as I hung up I realized that the emotion in my voice might alarm them into thinking that something was wrong with Dillon, so I left a second message to say that he was just fine and I was just happy. He sniffed around the apartment for a while, checking things out; and then, when the three of us sat down to a dinner we had ordered delivered from Palazzo’s Italian restaurant, he came and lay down between me and Anna, with his head under Anna’s chair.

He’s with me now at the clinic, where I’m getting my daily IV fluids. He’s sleeping in front of me, on what JayByrd calls his “cloud,” a very soft mat that Anna carried over here for him. And he seems content.

He seemed to enjoy guiding me across the SkyBridge from the hotel to Elevator A, on the way to the Diagnostic Center for this morning’s blood draw, and again on the over here to the ATC Bed Unit on the same floor, near Elevator C. We’ve been going to a different ATC unit, one with the exciting subtitle “(R10),” but that’s not open on Sundays so we’ll be coming here instead. I can’t tell how it differs from R10, and I don’t know why it’s called the Bed Unit—there are beds upstairs, too, and the rooms feel pretty much the same. More mysteries. Maybe it’s just that the chairs aren’t quite as comfortable in here, so that I’ll want to get into the bed after a while?

My blood counts are very good this morning: hemoglobin is back up to 12 (it dipped a little yesterday); platelets are 173 (still on their way down from that high of 251 the other day, but still well within normal range and far above anything they worry about); and my overall white count is 5.1 (the absolute neutrophil count hasn’t come back yet). It’s going to be a good day. Anna and Ledia are off having breakfast somewhere and enjoying each other’s company; I’ll get to enjoy their company in a few hours, and I’m looking forward to that.

That’s it for now. Thanks and thanks again to Dan and Diann, for welcoming Dillon into their home once again and showing him such a good time (he got to go to the beach at Point Reyes last weekend, and he got to walk in the woods around the cabin they’d rented!), and for taking such good care of him.

Day 25: The first week out

It’s Thursday night as I start this—Day 23 post-transplant, four and a half days out of the hospital, four days in the Ambulatory Treatment Center on the 10th floor… So many things to count! And such a welter of emotion.

Everything is going well. My blood counts—the All-Important Numbers—are great. I think hemoglobin was above 12 this morning for the first time; platelets were something like 225, down a little but still well within normal range; the overall white count was at 4.0, and absolute neutrophil count at 2.6, again comfortably within normal range. Yippee! Dr. Andersson and Dr. Pollack (the resident) visited me in the ATC yesterday along with Elaine, the Advanced Practice Nurse who’s more or less in charge of my case on a day to day basis, and Andy, the “PharmD” (pharmacist with doctorate), and all expressed satisfaction with my condition and my progress. So hurray for that too! Elaine an Andy came back today (they come every day), and we got answers to such burning questions as, Why can’t I cut my fingernails? They’re making me crazy (which leads me to wonder, not for the first time, how the typists of bygone days did it, with those long, long fingernails)! The answer, it turned out, had to do with T-cells. My white count may be fine, Elaine said, but that doesn’t mean I have a fully functioning immune system. She used a military analogy: the white cells are the soldiers of the immune system—they go forth and do battle with infection and other strange things. But the T-cells, she went on, are the generals: they handle all the coordination and communication among groups of white cells. I have the white cells, but I don’t have the T-cells; hence I’m not really capable of mounting a coordinated defense against the things that might invade my body and try to do me harm. The absence of effective T-cells is no accident: they’re giving me immuno-suppressants specifically to thwart coordinated activity in there (ProGraf, which is Tacrolimus in capsule form; I’ve been getting it since the Saturday before the transplant), so that my new immune system won’t mount a coordinated defensive attack against me. So, back in the macroscopic world, they’re worried that if I trim my nails I’ll cut myself, and, however tiny the cut may be, it will become a site for infection to enter in (Andy chimed in at this point to report that they’re working with a patient right now who’s in exactly that situation, and they’re having a hard time getting the infection under control). So OK; I’ll let ‘em grow a bit longer.

Back up, John!

Last time I wrote, on Sunday evening, I was taking pleasure in the sheer fact of having gotten out of the hospital late that morning, enjoying the spaciousness of our two-room suite at Rotary House… It’s hard to believe it’s only been a few days since then. We’re still marveling at being out of the hospital, being able to move about, just being here. We’ve also been adjusting to a new routine and trying to get it tweaked so it works for both of us. The key elements in this routine are daily visits to the Diagnostic Center (2d floor, elevator A) for a blood draw and then to the ATC (10th floor, elevator C) for IV fluids plus any other stuff the blood work shows I need—so far mostly magnesium (no blood products!). The trick is when. Monday, Tuesday, and Wednesday I went in the afternoon; this was at my request, on the theory that it would leave ample room in the mornings to write, check email, get into a rhythm of some sort. But that didn’t really work well for Anna, and it didn’t work well for me, either: for one thing, the need to be at the Diagnostic Center at least an hour before going to the ATC cut into the morning, and only on Monday was there actually time enough to come back up to Rotary House before going to the clinic. And then when I got back to Rotary House in the late afternoon I was tired and wanted to rest for a while before going to dinner, and that meant we were getting to places at peak times instead of the strongly recommended slow hours when we can be more confident of being seated away from people who might be coughing and sneezing their way through dinner. So I asked them to switch me over to a morning schedule, all apologetic for causing additional work. “That’s fine,” said the nice lady at the desk, “No problem. Our mornings start at 7:00…” to which I gulped and asked could we possibly make it more like 9:00 instead? Which we did for today. But tomorrow I’m due at the Diagnostic Center at 7:30 and at the ATC at 8:30. I’m sure I’ll be glad when I get back to the room here at noon, but it seems I’m not such a morning person as I used to be, so we’ll see how it goes. I really did like getting back today in early afternoon—I rested and read a little, Anna combined doing cardio in the gym downstairs with doing laundry (thank you, sweetheart!), and then we went for an early and very pleasant dinner at a Japanese place in Rice Village called Azuma.

We’ve had visitors this week, too, which was lovely. Sharron Rush and Glenda Sims came in on Tuesday afternoon just as JayByrd was leaving, though we didn’t see much of them till later in the evening after they’d come back from a tech meeting somewhere in town where they were encouraging yet another group of Web developers to incorporate accessibility into their designs. We went out for breakfast together Wednesday morning, and then Glenda took me to my appointments in the Diagnostic Center and the ATC while Sharron and Anna went shopping at Central Market. Anna and Sharron returned with lunch for everyone; those who had salads took them out of the room to eat them since raw foods are still verboten (see discussion of T-cells above). Sharron and Glenda left shortly after lunch, and a few hours later Jim Thatcher and Diana Seidel came again; they stayed with me at the ATC until Dr. Andersson and the rest of the team had gone, at which point I was free to go too. We walked back over the Skybridge to Rotary House, where Anna joined us when she’d finished her workout, and then we went to dinner at Little Pappas, a nice, slightly “old world” (Anna’s phrase) seafood place owned by the Pappas family, who have restaurants all over Houston (including places like Pappadeaux—New Orleans style—and Pappacitos—Mexican—that have traveled beyond Houston). It was a nice meal—I had a cup of shrimp gumbo, then Anna and I split a piece of grilled snapper that would have been way too much for either of us alone, and I think Jim and Diana did the same. Then home to talk a while, then bed relatively early. It was a great evening.

I was a mere spectator for one of the week’s major activities—Anna’s transformation, with JayByrd’s help, of an ordinary hotel room into something that feels like home. She’d done it in the hospital, so successfully that everyone who came into the room exclaimed about how nice it was, with its lamps and colored blankets, and the wall centrally occupied by a huge calendar that she colored in every day, and where she recorded the names of visitors and of those whose envelopes we’d opened, while the contents of the envelopes went up on the wall around the calendar or on the altar near the head of her Murphy bed. Now she’s done it here at Rotary House!

And there are the envelopes, whose contents keep on amazing us and moving us to tears. There were sweet cards from both 14-year-old Zoe and 2-1/2-year-old Maia Ollagnon (like Arielle, grandchildren of our old friend Judith Sokolow, who visited last weekend and gave us news of the grandchildren’s’ new schools in Moscow, where Rachel and her husband Pascal, a geophysicist, moved at summer’s end (we’re waiting to hear what fall and winter are like…). There’ve been three cards from Kathy Keller, a good friend from our accessibility work (she too has been a regular AIR participant for years now), each card beautifully mirroring my mood and the challenges of the moment. BodyChoir friend Great, who also visited last weekend, sent a note expressing thanks for our energy-exchanges in dance (this was her second note! Thanks so much, Greta!).  Lauren B., also from BodyChoir, sent an amazing note thanking Anna for facilitating (for those of you who don’t already know, one of Anna’s great joys has been selecting and playing music for our BodyChoir dances) and thanking me for dancing, too (that part’s easy!). Another new BodyChoir friend, Peg Maupin, sent us a very thoughtful note drawing connections between our situation and her own transitions, accompanied by a lovely CD of her own songs, just guitar and voice—another revelation of how many talented people there are among our friends at BodyChoir. But the music didn’t come just from BodyChoir folks: Wick Wadlington and Elizabeth Harris sent us a Be Good TOnyas CD that we had talked about during their visit here, and it’s just lovely. And our nieces, Rebecca Frank and Sarah Spindler (Anna’s sister Patti’s daughters) sent us a CD compilation of fine, danceable music—Latin and French and bluegrass and hip-hop and many other things—that we’ve been enjoying very much. And it isn’t just music: Molly Guzzino, talented art therapist and one of a group of self-relations therapists with whom Anna’s been participating for the past few years, made a series of lovely rose hand-designed cards with thin colored origami style tissue and beads. Amazing and intricate and sweet and delicate. Janis Bergman-Carton sent photos of amazing times together, some   dating back as far as 32 years when she and Evan and I met in Baltimore, where Evan and I were in graduate school together at Johns Hopkins and Janis was teaching 8th-grade English in Dundalk, a Baltimore suburb. Now she’s teaching art history in at SMU in Dallas and commuting weekly!  Evan’s latter, which we opened on a different day, was a fine complement to Janis’s, narrating remembered images from those same 32 years: the very first time we were together, in a crowded seminar room in the basement of Gilman Hall at Hopkins, where then-English Department chair Ronald Paulson explained to us incoming grad students the rules of the road we had just entered; a walk around the rim of Bryce Canyon many years later, Evan and Janis with me and Anna and Dillon. Evan’s letter included two poems, Wallace Stevens’ mysterious “Soliloquy of the Interior Paramour” and Theodore Roethke’s moving and beautiful “The Waking” (“I wake to sleep and take my waking slow./ I learn by going where I have to go.”), which I’ve always loved, and which seems especially apt for this moment in my life, which requires that I take it slow, going where I need to go and learning what there is to learn in that place. And so from my oldest friends in Austin to one of our newest friends here: Melissa, the nurse who took care of me for much of the time I was in Room 1137, came by on my last day there with a beautiful dragonfly card and a lovely note. She’s going back to New Orleans in just a week or so, having moved to Houston after Hurricane Katrina destroyed the hospital where she’d been working. Having never given up the dream of going home, she’s buying her first house and going home. Bless you, Melissa, for taking such good care of me and making me feel so human. And bless all of you for that very same thing.

• Quick note, Saturday morning, Day 25: we had a wonderful visit yesterday afternoon with Evan and Janis, made even more wonderful when Dianne Stewart and her husband John Barton joined the four of us at El Meson for dinner.  There was a funny side note to this one:  we had come to the restaurant in separate cars, since Evan and Janis were planning to drive back to Austin right after dinner; and Dianne and John were coming in from Austin. So the plan was to meet at the restaurant. It almost didn’t happen: we got there within minutes of each other, apparently, but (perhaps because I was wearing a hospital mask) they seated me, Anna, Evan, and Janis in a back room where we weren’t visible from the door; and then they seated Dianne and John at another table in the middle of the restaurant, also at a table for 6, and then we all sat at our respective tables, waiting for each other and wondering… If it hadn’t been for Anna’s decision to call Dianne one more time, we might never have found each other! But we did, and all was well, and all shall be well.

And Dillon comes back tonight, with Ledia!

Day 19: I'm out!

We’re at the Rotary House!! Dr. Andersson and the team came to my room around 10:30 this morning, looked me over one last time (well, till tomorrow at the Ambulatory Treatment Center), and signed off that I was good to go. Judith Sokolow and George Lasalle were there to witness the event, as was JayByrd, and so was Anna, who had started to head downstairs to bring the car around when she saw the medical team heading toward us. So off we went, everyone except me carrying something as we cleared the last of our stuff out of the hospital room. We got into the car and drove over to the Hilton for lunch—it has quite a nice restaurant, and we were the only ones there, thus honoring the injunction to avoid crowded places! And then, after lunch, drove back over to Rotary House. Judith and George collected their bags and left for Austin; Anna and JayByrd and I came to our room. Anna sat me down in the big white leather chair that JayByrd had brought for us from home on Saturday, and then she and JayByrd got really busy getting this little two-room apartment into order, setting up tables (including the desk I’m working at right now in the bedroom and a similar one in the living room where JayByrd can work when he’s here) and room dividers and bathroom stuff and kitchen stuff and I don’t know what-all else; and I tried to take in the fact that I’m out of the hospital.

I don’t think it’s realy hit me yet: my shoulders are tight even after Greta’s massage yesterday afternoon—I hadn’t realized how tightly I’d been holding myself. Has it been the whole time—all 26 nights in that room up on the 11th floor? I went to the bathrrom; I can’t tell you how good it felt not to have to wrestle the IV pole in there with me, to say nothing of not having to pee in a so-called “urinal,” aka plastic bottle, which I had to do so the staff could determine whether my “output” matched my “intake” closely enough to decide whether I needed diuretics or not… I took a nap while Anna and JayByrd went to the store for a few necessities (like a longer Ethernet cable for the living room); then Anna came in and joined me, and it was so wonderful to be lying there in the same bed with her. And then I got up to take my 5:00 pills, and now I’m going to send this off before we go for dinner (another uncrowded place). I’ll try to post something tomorrow about the rest of the weekend, and all the friends who came from Austin to visit. I’m due at the clinic at 12:30 tomorrow afternoon, but we have to go to the Lab for a blood draw at least an hour before that, and of course it takes time to walk from place to place in the clinic—something I haven’t had to do for a while now! So we’ll see how the day goes and whether I’m up to writing.

For now, suffice it to say that I’m delighted to be out of there! And to say thanks again and again to everyone for all the magical love and support. Without you, I’d still be in there waiting for the medicine to work. Instead, I’m here at Rotary House, thinking about going to dinner instead of having dinner come to me, at least 4 or 5 days ahead of what we expected, and feeling better than anyone less than three weeks past transplant has any right to expect. I’m a very fortunate man.

Day 16: Speed bump

Well, damn. Hit a little speedbump on the road out of here that will delay discharge for a couple of days: a case of the sniffles! I was out walking around the halls with the nurse, Imelda, yesterday morning, when she noticed that I was sniffling. She asked if my nose was running, I said yes, and when we’d finished our walk she took a couple of samples and sent them off to the lab. Preliminary results came in this morning: negative. Dr. Andersson and his team came in a while later and said that I could still leave the hospital if I wanted to. But it didn’t feel like the right thing to do, much as I want to get out of here: if I were over at Rotary House right now instead of here in the hospital room, Anna and I would be anxiously listening to every sound and worrying about whether to call the clinic, go to the Emergency Room, etc., etc. Not healthy! So I decided the best thing would be to stay here and let the professionals help us for a couple more days. Naturally we’re disappointed—we’d been so looking forward to expanding our horizons! But it’s just a couple more days—probably till Sunday, though no one’s come out and said that. But Dr. Andersson had said earlier that he doesn’t like to discharge people when the first follow-up trip to the clinic would fall on a weekend; that was why he had been focusing on Thursday rather than Friday.

It’s weird, though. My blood counts were great this morning: hemoglobin 9.1 (still below normal, but heading upward), platelets were 125 (ditto), and the all-important white count was 4.9, actually within the normal range! And the symptoms I have are just the kind of thing I’d have brushed off as allergies a year and a half ago. And it might indeed be allergies: there’s been a change in the weather here (what a way to find out!), as one of the doctors said, so who knows what allergens have made their way past the air filtration system up here. But this is a whole new world, this post-transplant thing: Dr. Andersson explained that even though my counts are great, my immune system is still barely functional. It’ll take a while to adjust my thinking and train my intuition; this seems like a good place to practice.

Update! (Day 13, really!)

More good news: not long after my “Good news” post this afternoon, Dr. Andersson and Dr. Pollack came in along with Rashad and someone else whose name I didn’t catch. They’re pleased with today’s numbers and with the overall trend—so much so, in fact, that Dr. Andersson says we can begin planning for my discharge from the hospital on Thursday!  That’s the day after tomorrow!

I can hardly believe it!

Correction: this is Day 13, not Day 12 as the headline says. When Jim an Diana came to visit on Wednesday I decided it was Friday, and that was that. Blew my counting all to hell.

Time for more of your letters...

Clarifications and addenda: The CD compilation of “Music to Groove By” was actually sent by Brian Daugherty and Mia Carter, friends and colleagues from the English Department. Thanks for the clarification, Brian—and thanks especially for the music!  And thanks to Kathy Keller for solving the Mystery of the Beautifully Decorated Cigar Box! It’s from Alice Mabry, a BodyChoir friend who’ll be visiting , together with Kathysoon. Thanks, Alice! And an addendum to the visitors’ list from last weekend: Nicky Jeffords, a writer and painter who’s become a close BodyChoir friend, stopped by briefly after dropping her husband and son off at the airport so that Justin can begin the new school year at his new school near Santa Fe; Nicky’s daughter, Gabi, was waiting in the car downstairs, so Nicky couldn’t stay long, but it was great to see her just the same. I sure hope I’m dancing as hard as she does ten years after my cancer treatments!

More from the 130 Letters project, which continues to bring us wonderful surprises that  make us laugh and cry:
A beautiful letter from BodyChoir Brucie, a small wiry man in his early 60s who dances like an acrobatic angel. Sharron Rush, founder of Knowbility, organizer of the annual Accessibility Internet Rallies that do so much to spread accessibility awareness through the design community here in Austin and, increasingly, on the national level as well; and my co-author on Maximum Accessibility, together with her husband Ron Hicks, painter and musician, sent long extracts from Whitman’s Leaes of Grass, a poem that shaped my understanding of America as a world of possibilities, as it has for so many others over the past 150 years. Yvonne Miller, another BodyChoir friend—talented dance performer, staff member for Yo Yo Ma and, most recently, a manager at the Performing Arts Center at UT—sent a thoughtful, meditative letter accompanied by a volume of Billy Collins’ poetry—he’s a poet I hadn’t known until a few weeks ago when Yvonne’s husband, Brian, spent some time at our house in Austin reading me poems from the same volume.
More poetry came from my Rhetoric colleague Jeff Walker and his wife, Yoko, a professional librarian at UT—this time excerpts from the ancient poet Pindar (Jeff is a classicist) celebrating love and the strength that comes from it. From Becky Gibson of IBM, a colleague in the Web Content Accessibility Guidelines Working Group with whom I spent a fine day walking through Brussels’ parks and finding good restaurants after a big WCAG meeting just over a week before the initial leukemia diagnosis last year—from Becky came a moving note and a beautiful photograph that she had taken herself on a trip to Antarctica. She said that she had wrestled with whether to send me a photograph or not, and finally decided in favor since photography is her passion. Thank you, Becky. I’m glad to havfe the photo precisely because taking it means so much to you—and besides, your long  description is terrific! Derek Featherstone, talented Javascript programmer, accessibility advocate, and fine teacher, surprised me with a nice Net Note, hand delivered by a hospital volunteer. And then—speaking of being caught by surprise—what should arrive in the mail but a package from old friend Sara Kimball, one of the world’s foremost scholars of ancient Hittite language and culture—the package contained a gimme cap with the question “Got Wine?” across the forehead, a beautifully apt take-off on the stupid TV ads with the slogan, “Got Milk?” You got the money, honey, I got the time… And there was a characteristic Sara note about how our President George W. Bush’s presence in Main for a wedding had held up Sara’s attempts to cross some intersection (she was also vacationing in Maine at the time) for 45 minutes: Couldn’t he have just stayed in Texas? She asks (a sentiment shared by many but by no means all the readers of this post).  James Craig, an extremely talented Web designer and accessibility advocate whom I first met when he got involved in AIR, who recently moved from Austin to San Francisco and a new job with Apple Computer (bravo, James Bravo, Apple!!) two CDs  filled with episodes of his favorite radio program, Ira Glass’ This American Life, which I also enjoy  very much. There was a sweet note from Brucie, one of the great dancers in BodyChoir, that really captured the flavor of my dance in a very kind way. Sharon Slater sent a beautiful letter about a recent trip/pilgrimage to Mexico, where she’d gone to a monastery for food, Including spiritual nourishment and shelter. Judith Sokolow(you may remember my mentioning in a previous post that Judith and Anna have been  friends since they were housemates at Sarah Lawrence) sent a short, thoughtful letter and a card. Eileen Dolan sent a lovely letter accompanying three stones. I’m not sure where they come from, but two of them feel cool and shiny; the third, biggest one is rough to the touch, as if it were a different stone altogether. All three are heart-shaped, and will join Peg’s jasper heart on the altar in the opposite corner of the room. Franny, another BodyChoir friend, sent beautiful drawings that she had done, together with a thoughtful card and a book. Kunda, who’s actively involved in groups seeking to restore the old prairie grasses and other vegetation native to the Texas plains, and a friend from BodyChoir, sent quotations from numerous healers. Vicente Fores sent a great note along with a copy of his introduction to a scholarly journal about Shakespeare whose publication was timed to coincide with a Shakespeare festival in Valencia a few years ago, where Vicente and his family live. Jan and Michael Haney (more BodyChoir friends!) sent a fine letter.  Pam Scott and Judy Watford sent a card  with different  messages, one in inkprint and one in Braille, which Pam has tried twice to teach me—to no avail, since I wouldn’t do my homework. And I think Judy was in the Commission for the Blind’s Technology Evaluation Unit the day I first laid hands on JAWS.  From Joan Mullen, a colleague in Rhetoric, comes a lovely poem/prayer   that sounded, as Anna read it, like a guided meditation.  Wayne Lesser and his wife, Lu, sent a card with a beautiful paisley design and a poem inside.


Steve Podowlski, a computer wizard who also dances with us at BodyChoir, brought his message in person today: there must be a dozen bottles of healing drinks, in many varieties. Anna’s brother Rick, and his wife, Evelyn, visited with for a while in the hospital room, and then the three of them (Rik, Evelyn, and Anna) went out to dinner. And finally for now, Lisa Kimball (no relation to Sara, above), and also a college friend and housemate of Anna’s and Judith’s, sent an inspiring card whose front face read, “hen life hands you a load of lemons, make lemonade.” And then on the inside was a stroke of brilliance: But if life hands you a load of crap, don’t make anything! And with that timeless advice there was a book, too, called What Were They Thinking?—a history of bad ideas in many fields over a long period of time.

Day 12: Good news

And suddenly it was Day 12, otherwise known, in the United States and Canada at least, as Labor Day. And because it’s a holiday, our friends Larkin and Leonard have been visiting.  Among other things, they brought news of a Dillon-sighting in California@ Saturday evening they had dinner with their friend Linda Sheed, who works for the Trust for Public Lands, where Dan Schwab is director of training; Linda was at last week’s training in California, to which Dan brought Dillon, who was reportedly very happy. Larkin and Leonard also brought their copy of Marianne Moore’s collected poetry, the one edited by Grace Schulman in 2003. Larkin read aloud some of my favorite poems: “The Steeple-Jack,” “The Frigate Pelican,” “Peter,” “”Silence,” Bird-Witted, and “Virginia Britannia”; and Anna read the long, dense, beautiful ode to Mt. Rainier, “An Octopus,” Moore’s recasting of Paradise Lost. ”This followed a great visit earlier in the week from Jim Thatcher and Diana Seidel, who brought with them a bottle of Pinot Grigio (for Anna), a pair of really tasty pecan-and-sour-cream muffins from Central Market, and a really ugly, cuddly, stuffed-animal ladybug.  Later today we’ll see Rick and Evelyn, Anna’s brother and sister-in-law.

Other important news: Anna just came back from brunch with Larkin and Leonard, I’ve had my shower, and am in process of receiving a unit of packed red blood cells even as I type. And we’re waiting for Dr. Andersson to arrive—he’s taking over today as attending physician, succeeding Dr. Ueno, who told me as he was leaving my room last night that he’d been on duty for five weeks straight (I hope he was banking vacation points somehow; that’s a long stretch!). Dr. Andersson is the transplant specialist whom Anna and I first saw at Dr. Tucker’s suggestion in March, when we all concluded that transplant was not needed; he’s also the transplant specialist whom we saw again in May after the relapse in my Central Nervous System and brain was discovered. And of course we saw him again two and a half weeks ago, the Friday before we checked into the hospital.


I’m hoping that Dr. Andersson will confirm what the nurse, Rashad, said was “good news” from this morning’s blood-counts. My white count, the only one they really care about, went ‘way up overnight—from 1.8 yesterday to 2.7 this morning! And yesterday morning’s 1.8 was an even bigger jump from Saturday’s 0.5—such a big jump that they discontinued my Neupogen injection. So my white-count has gone up three days in a row—one of them without external help. And that starts to look like evidence for engraftment, evidence that Peter’s donated stem cells are starting to take hold in my bone marrow, producing the first cells of my new immune system! When I told this news to Peter earlier today, he laughed an evil laugh and said, in the tones of a younger brother who’s waited years for such an opportunity, “I’m takin’ over!”

Meanwhile, waiting for the attending physician or someone like him (sorry, irresistible flashback to old Firesign Theater moment), today’s transfusion of red blood cells has just finished (the hemoglobin count had gone  down to 7.3 overnight, from 8.4 yesterday), and Rashad just discontinued the continuous flow of Dilaudid that had been going for something like 36 hours to handle the pain from my mouth-sores; the mouth-sores have improved considerably, so that I think I can manage just pressing the button when I need it. The Dilauded definitely helped, but it also seems to have given rise to a number of hallucinations” strange, illegible text appearing on everything my eye interpreted as a blank surface, faces looming off my left shoulder (usually) and then disappearing as soon as I turned my head to focus on them. Most interesting was the one I woke up with this morning around 6:00: I knew that it must still be dark outside, but the whole room was suffused with a whitish-yellow light like sunlight, and everywhere I looked I was surrounded by what emerged as soft, crumbling, red-brick walls overgrown with ivy. Every surface appeared this way, so that the walls (which seemed very high) appeared to merge into darkness up high, where the ceiling was. It didn’t matter whether my eyes were open or shut: I saw the same thing. And yet I knew where I was: as I said to Anna when she came in with a yogurt for me, “They don’t allow live plants in here.”