Saturday, September 16, 2006

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!


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