Friday, August 25, 2006

Day 3: Waiting game

          It’s Friday. It’s after transplant, so the days are numbered positively now: this is Day 3. The big news here is that there isn’t really any big news: I feel surprisingly well. Anna says my color is good, and my appetite is good (Anna brought me a plate of migas, a side of sausage, and a little dish of Whole Foods applesauce-with-blackberries for breakfast this morning, and we had Thai food from Nitnoy last night!). So we’ve settled into a kind of waiting-and-counting game. We’re waiting, ironically enough, for my daily blood counts to bottom out, which should happen sometime in the next four or five days. This morning my white count as at 1.5, down from yesterday’s 1.9, which in turn was a big drop from 3.5 recorded on Day 1—which was a not-unexpected bump up from the previous day due to the infusion of new stem cells in the transplant. The white count will hit 0.0 or very close to it and hover there for several days, just as it did earlier this summer when I was at Seton in Austin. The big difference is that when the count starts to come up this time, it will be the new immune system rising, and we’ll be watching for signs that it has truly taken hold: “engraftment.” Meanwhile they’re giving me Tracolimus by continuous infusion (in other words, there’s always an IV bag on my pole), and every third day there’s a very low dose of something called Methotrixate, a type of chemotherapy; both drugs are meant to guard against Graft vs. Host Disease. The medical team was just here (the attending physician, a research fellow, the pharmacist, and the APN). They say I’m doing “just fine,” and that the slowly decreasing blood counts are quite normal. Everyone’s different, they say repeatedly; in some patients, the counts never do hit rock bottom and they never feel really sick. This is a good thing! And doesn’t mean the transplant has failed. It just means the patient didn’t get as sick as some people do. So now I’m hoping my luck continues to hold: I’ve been sick, thank you very much, and if I don’t have to do that again I’ll be very happy!

I’ve been doing my best to exercise, and have gotten a lot of help doing it. Both the occupational therapist and the physical therapist have been here already today, so I’ve done some upper-body exercises and walked just under a quarter-mile (more walking later). Earlier I took a shower and somehow managed to flood not only the bathroom but part of my room and the hallway outside—apparently someone put the “pink bucket” (whatever that is) “over there” so that it blocked the drain, and since the difference between the bathroom floor and the shower can’t be more than an inch—voila! Water, water everywhere…

Anna has been working heroically—doing laundry so I don’t have to wear hospital gowns and so she continues to look beautiful, getting me three meals a day, keeping our finances as well organized as possible, and keeping up with her own business (yesterday she did several interviews, and she just finished an extended call with a client, for example). It’s a huge help when Diane’s here (as she was on Tuesday and Wednesday), but they both work really hard.

In the evenings, we’ve been walking around the halls for 20 minutes or so after dinner and then watching comedies. The Rotary House has a library of donated videocassettes, mostly comedies, which are available for free; so Anna has brought a few batches over and we’ve worked through them: Under the Tuscan Sun, Sabrina, The Good Company, and, last night, Animal Crackers, which was just wonderfully silly and fun.

The opening of the envelopes from the 130 Letters project continues to be a hugely important part of our day, and often we open one envelope in the morning and then force ourselves to wait till evening before opening the next one. The letters and other objects—CDs, artworks—are moving and powerful, and we’re both deeply, deeply grateful for the insights you’ve shared, and for the love and energy that have gone into them.

News of the last few days: Shana, who at 4 is one of the youngest BodyChoir dancers, drew a pretty card with herself and other figures wishing me well. Natacha Poggio and her husband Victor—she’s a graphic designer from Argentina who has developed a strong understanding of accessibility and its role in design and aesthetic experience; she and Ledia were in the MFA Design program together—sent two envelopes. One held a beautiful Ansel Adams print of Yosemite and a letter as well as a packet of sage and pine chips. The other contained a CD called Flor Tango by an Argentine group that Natacha and Victor had met when they were at Stanford as undergraduates. Jim Thatcher and Diana Seidel sent a hand-made card festooned with decorated balloons and good wishes. (Jim has been a very important man in my life: he developed the first screen reader for PCs with a graphical interface--the kind of computer almost everyone uses now, which Jim’s pioneering work first made accessible to people who are blind—and I’ve gotten to work closely with him on accessibility since we met in person six years ago at an AIR event.) Diana is a terrific potter, maker of delicate, strong bowls and cups that feel wonderful in the hand. Larkin and Leonard sent a stunning letter. Larkin and Anna have been friends for more than 30 years—they met as next door neighbors in south Austin when Larkin’s daughter Rosa and Ledia were infants. A novelist, Larkin took the trouble to include two poems by Marianne Moore in her letter (Moore was the subject of my first book in 1986), using them to say some very kind things about me (much as Moore used animals and objects to comment about people). One of the poems was “Nevertheless,” written during World War II; it’s about strength and courage and persistence, common themes in Moore’s work. Twenty years ago I had judged the poem slight and sentimental; that certainly wasn’t how it sounded to me a couple of days ago, and I thank Larkin for showing it to me again. Leonard, Larkin’s husband, is a quiet man originally from Holland. When I first met him he was a surveyor; he’s now a high school math teacher in the small town of Thrall, not far from their home in Georgetown. He’s a fine carpenter, gardener, singer, and player of the recorder; his letter contained an extraordinary image of a tree with deep, strong roots (and a wonderful, funny image of Anna as “tree-hugger”).

Bob Koch, research scientist and husband of Pat Koch, dancer and psychology buddy of Anna’s, sent a very nice note as did Betty Huffmann and Jonathan Schauer, guide dog owner and guide dog trainer couple who inspired me to get a guide dog and helped Anna and me learn about life with a guide dog. Betty was a UT colleague/neighbor as Commission for the Blind counselor and now is leading support groups on adjusting to blindness. Laura Ricci, intellectual, marketing guru and author friend, who now lives in Wisconsin, sent a book Anna plans to read to me entitled “The Hidden Messages in Water.”  Murray and Addie Levine, family friends I’ve known for 40 odd years as I grew up in Buffalo, sent me a lovely letter reminding me of funny times when they and my parents visited David, their son and me for homecoming weekend in 1971 at the University of Michigan.  

On the evening of Transplant Day (Tuesday) I got a surprise: a volunteer came into the room (I think Anna and Diane were over at the hotel working). He said his name was John, and he had some letters for me. “You’re a popular guy,” he said, and proceeded to read me something like a dozen “Net Notes”—email sent to me via the hospital Web site; the messages are printed out and hand-delivered by hospital volunteers. All were from people who knew it was Transplant Day and were sending special good wishes just for the occasion (we had already opened envelopes from some of them, so these Net Notes were “extra”!). I was surprised and excited to get these messages so near the end of what had been a hugely eventful yet strangely quiet day, a day that would have been almost “normal” had it not been for the hospital setting and the fact that we knew what a potent, transformative collection of cells had been in the morning’s IV.


Post a Comment

<< Home