Tuesday, October 31, 2006

Day 70: Good numbers for me and Frank

Anna talked to Frank’s mom, Rose, this morning. Frank seems to be feeling a bit better—he’s got a bit of pain this morning (so they’ve given him some meds), but he’s up and walking around the hospital floor while the plan evolves. We’re hoping his computer will be fixed and ready to go either later today or sometime tomorrow—at last report the new motherboard hadn’t come in to the repair shop yet, but once it arrives things should go quickly.

The response to Anna’s call for prayers and/or contributions has been just amazing, and so beautiful to see. Thank you, thank you, thank you for opening your hearts and checkbooks to Frank. We may not be able to cure him, but we can sure help him heal.

It’s Monday, Day 69 post-transplant for me; tomorrow I’ll be ten weeks old! When we were here back in May or June, I met a woman in the Rotary House lobby—she had stopped to admire Dillon—who was on Day 71. She sounded strong and vigorous, her voice was clear, and she said it had been “a breeze” so far. Then she added, “Just keep up the faith, and keep exercising.” And she was off again, resuming her brisk walk around the hotel. I marveled, wondering if I could possibly hope for an experience like that. It was hard to imagine that I’d ever get to Day 71. But now I’m just two days short of that, and here I am—so far, so good!

My counts are great today: Hemoglobin 13.1 (up from 12.8 on Friday), overall white count 5.4 (up from 4.something), neutrophils 3.0 (up from somewhere below 2.0 if I remember right), and platelets115 (up from 86 on Friday, which was down from 94 previously, etc.). Electrolytes are good, too—even the magnesium, at 1.7, held its own over the weekend, which means that the gradual transition from IV to oral magnesium is working. And that, in turn, means we’re still on track for returning to Austin November 20—just three weeks from today!!

And another thing: preliminary results from the latest lumbar puncture (Friday) saw “no malignant cells identified,” and no untoward little fungal things, either. So the spinal fluid looks good! Later this week we’ll hear the results of the most recent chimerism test—that’s the one that determines whether the red cells circulating through my body are carrying Peter’s DNA or mine. (This is different from the Bone Marrow Aspiration that was done Day 30: that one looked at the cells in the bone marrow to ask the same question, and came back 100% Peter; and an earlier chimerism test had apparently shown very good results as well, though no one had told us about it… So this one will hopefully show good things, too.) There may be some residual DNA of mine floating around in the bloodstream; one of the things I learned  along the way last week was that red cells live for 120 days, so if there were brand-new red cells born the day of  my transplant, they’ve got 50 days left before they go out of circulation. (Where do they go?)
I did a little roaming in the blogosphere over the weekend. I finally went to Technorati, a blog-tracking site, to look for other leukemia blogs. The most interesting one I found is called Leukemia Survivor, by a man named Robert K. Brown, now in his mid-30s. The writing is good, lively, often cinematic. But that’s not all that made me feel compelled to keep reading. Like me, he had AML. Like my friend Frank, he was stricken at the age of 20 or so, while in college. He had many of the same symptoms that Frank has had. Like both me and Frank, he had a bone marrow transplant. And, like both of us, he’s still alive—in fact, his blog was written long after the fact—a dozen years post-transplant. That gives me hope, both for myself and for Frank. I feel a different sort of personal connection with this guy, too, though it’s entirely coincidental. Early in his blog, he does some scene-setting—there’s a description of a landscape coming more and more sharply into focus, and as it zooms in it describes a university campus. After a few lines it seems to me I recognize the place—and, improbably, I do: it’s the University of Lancaster, in northern England, where I taught on faculty exchange in 1981-82, living on campus for the year in a flat at the top of Bowland College; Robert was an exchange student there ten years later, on a junior year abroad from Carlton College in Minnesota.

Speaking of hope for Frank—it’s Day 70 now, Tuesday—there’s good news today!! Anna told me when she came to pick me up at Physical Therapy after my workout. She had spoken to Rose, and they had just learned the results of Frank’s latest test: the percentage of leukemic blast cells in his blood has dropped from 35% on Friday to just 1% today! Just 1%! It’s an incredible drop, even perhaps miraculous—not just because it happened so quickly, but because it happened without further medication; there’s been no more chemo since he reached Alexandria on Friday afternoon. There were tears in my eyes and a sob in my throat when Anna said this; I don’t know why I tried to hold them back. I ask you now to focus your good thoughts and prayers and wonderful energy on Frank again, so that he can sustain this improvement and climb back toward health. Thanks.

Wednesday, October 25, 2006

Day 64: Good progress

Anna and I are off to the Lab for the ritual blood-draw, then on to the ATC for IV fluids ((equally a ritual). They’re starting to taper these off in preparation for our return to Austin (!). This means that they’ve reduced the amount of magnesium in the IV fluid and increased the number of tablets I take orally—up to four per day, starting today. We’ll see how my stomach handles it; so far I’ve had no trouble with three a day, so here’s hopin’.

Yesterday’s counts were good: 13.0 red count, 4.6 overall white count, 2.46 absolute neutrophil count, 80 for platelets (still below normal, but up a bit from last week, when they were in the 70s the whole time). My tacrolimus level (tacro is the immuno-suppressant they give me to try to prevent the graft vs. host disease that has been so devastating for Frank) is down a bit as of yesterday, so today I’ll start taking a higher dose till the level’s right again. It’s a balancing act; Frank’s situation reminds me that it’s on the high wire.

I’m feeling very well, despite my sadness. My energy’s up, I’ve been getting a little work done, spending time with Anna, seeing friends. We’ve had some great visits—Jim Allan came for the day last Tuesday, driving in early in the morning, spending the morning with me at the clinic and the afternoon hanging around the apartment, driving home again after dinner. Glenda Sims and her husband, Scott, stopped by on Sunday for an hour or so on their way back to Austin after attending a wedding in Houston. And Jim Thatcher and Diana Seidel just left a few minutes ago—they drove in this morning, arriving about the same time as Dr. Andersson I think, shared a wonderful “picnic lunch” that Anna had prepared for us to eat in the clinic (!), then heading back after a coffee and a few minutes’ chat in our room here at Rotary House—Diana’s getting ready for the big annual pottery show. Thanks so much for coming—it’s such a joy to be with friends. (And, if I’ve forgotten anybody, please let me know and I’ll fix it, with apologies—I know I forgot to mention Allison Orr’s visit several weeks ago, one weekend when she and her husband Blake and baby Genevieve had been in town visiting Blake’s parents. Sorry, Ali!)

Back from the clinic now (it’s after 3:00). Today’s counts are a little better even than yesterday’s—hemoglobin up a smidge to 13.1, overall white count over 5.0, absolute neutrophil count at 2.74, platelets all the way up to 94! So they’re definitely starting to head upwards. Dr. Andersson came in surprisingly early for his weekly clinic visit (around 10:00 I think), fresh from his four weeks away—first to see his daughter, who’s in her first year at Vassar College in Poughkeepsie, NY; then to Sweden, his native country, for three weeks with family and friends. He says he’s very pleased with my continued progress, and when, holding my breath a little, I told him I’d very much like to be home in Austin before Thanksgiving, he replied that if things continue as they’ve been going that should be no problem. So we’re shooting for Monday, November 20—just a little less than four weeks from now! Hurray!
Love to all, and more soon. And oh, how I’m looking forward to coming home.

Update about Frank

Here’s a quick note from Anna, which includes a brief update about the young man I told you about the other day. He’s not doing well. Here’s Anna:

Hi all: John and I look forward to returning to Austin before Thanksgiving and appreciate all of the special blessings you have sent to heal John. It is all working!!! Thanks again for your visits, cards, sweet notes, poems, books, CDs, Central Market food, and so many other gifts. We are still opening them as part of our "130 Days" of blessings. 

And now we ask your help again. We have come to know a family from Alexandria, La. we love a lot. Rose and Franklin Jackson have a 21-year old son named Frank who was on John's floor in the bone marrow unit the whole time John was there. He is still there as he's been very sick, has severe kidney/bladder problems and bleeding caused by graft-vs.-host disease (the implant is trying to wipe out your body which it recognizes as "foreign.") He has just been told that his leukemia has returned, his transplant failed, and that there is nothing more they can do here for him other than palliative care. Frank and his parents are beautiful, open people. Frank Jr. was a freshman in college and runs an online Ipod music store. He loves computers and connecting with people that way. Frank Sr. is a minister in addition to his full time job and Rose has been away from her 2 jobs for over a year to take care of Frank. 

We ask, if you are called to offer one or both of these 2 things:   1) Your prayers and/or a card/note addressed to Frank Jackson c/o John Slatin, Rotary House, 1600 Holcombe, Houston, TX 77030. We all have faith that healing is still possible on many levels. We’ll make sure Frank and his family get them.  

2) A donation toward the $350 more I need (I have $150 of the $500 needed) to replace his H-P laptop's motherboard which was wiped out with a water spill in a vulnerable place. I've located a good repair person. If you feel called, please send checks to the address above, or pledge cash to Anna Carroll at 512-431-6619. Fixing this computer would light up his face I know. 

Anna talked with Frank’s mother, Rose, this morning. As things stand now, Frank will be flown by StarFlight on Friday to a hospital in his home town, Alexandria. Rose will fly with him, and Franklin, Sr., will drive one of their two cars (the second will be driven by a relative). Once in Alexandria, they’ll try to build up his strength enough so that he can receive chemo that will slow the leukemia down some. Anna has also been talking with Rose about some of the nutritional supplements I received (thanks to Elke Kniss and Glenn Luepnitz) while we were in Austin; perhaps there’s something there that would help Frank as it helped me. It’s a sad time.

Saturday, October 21, 2006

Day60: Good wishes for a young friend

Some bad news about another patient, a young African-American man who was in the Transplant unit when I was, whose mother and Anna have become friends: he learned today that his leukemia is back. He’s been having a really hard time all along. His transplant was in May (I think), and he was still in the Transplant unit when Anna and I came in mid-August, and still there when we left in September. He’s been receiving treatment in the ATC, like me, but for the past week he’s been back on the Transplant unit because he needed so many transfusions. Now he and his family know why. I can’t know how he feels; I can only know how I felt back in May when I learned that my leukemia was back. It could have happened to me again, too. Still could. So my heart goes out to him and his family, and all the good thoughts and good energy I can send his way. Please send him your good thoughts and good energy, too—mobilize those mirror neurons. His name is Frank.

Saturday, October 14, 2006

Day 52: Mirror neurons

Friday, Day 52, and so far a quiet day. Anna and I got to the second-floor Lab a few minutes past 6:30 and waited just a few minutes until I was called back. The blood draw was quick, efficient, and friendly, and when it was done I buttoned up my shirt, picked up my laptop bag and my fanny-pack and went back out to the Waiting Area where Anna was in fact waiting. We took Elevator A up to 10 and walked across to the ATC, near Elevator C; it’s a much easier walk this way since there’s far more human traffic on the lower floors and there are a lot more twists and turns through mazy corridors. We waited a while, but it wasn’t long before the assistant called me in to check my vital signs (blood pressure 125/74, temperature 97.something, pulse 98 (it’s been running high most of the time we’ve been here), weight 188.2). Then she told us we’d been assigned to Room 29—I think that’s the fourth time in a row for this one; they’re going to have to put my name on the door if this keeps up), so we trekked over there and got settled. Julie, the nurse, quickly got me plugged into my IV, then brought Anna a second chair like the one I’m sitting in, and poof! We’re all set. In a few seconds she brought the blood counts for today: overall white count 4.7, neutrophils 2.04, hemoglobin 13.1 (highest it’s been in a long time!), platelets still holding at 70, where they’ve stayed all week. Liver and kidney things normal, magnesium a little low as always, thanks to the Tacrolimus. So far, so good. Now I’ll wait for the nice lady from Physical Therapy to come and get me and take me down to the gym, on the first floor near Elevator F, the same elevator we rode when I checked in to my hospital room on G11.

We didn’t come to the clinic yesterday. Instead, Anna administered my IV at home (the pump and IV bag fit in a large fanny-pack around my waist—no IV poles!), and while it was running we went down to Infusion Therapy on the 2d floor (Elevator C again) to have them perform the weekly ritual of changing the dressing on my CVC. Then we went back to our place at Rotary House and had an early lunch—Anna has made a wonderful pot roast with onions and carrots in the crockpot, and it was just waiting for us to eat it when we got home. Yum. I spent the rest of the afternoon catching up, more or less, on email I’d missed during what had turned out to be a surprisingly long hiatus. Among all the spam and the bureaucratic stuff that needs attention, or needed it two weeks ago, were some wonderful responses to my previous post, and more recent ones to the post that went out the other night. Anna came back from the gym and we went out to dinner, this time to an inexpensive Thai place called Sawadee (which means “Hello!” in Thai). I had a cup of crabmeat soup followed by a thick yellow curry with chicken and carrots—big chunks of each; Anna had hot-and-sour soup and a Thai beef salad that sounded really good. We fell into a pleasant conversation with the couple at the next table. The man had been an attorney but doesn’t practice; he said his Multiple Sclerosis had interfered with this short term memory as well as depriving him of the use of his right hand. His wife trains dogs for the big dog shows (including, I gather, the Westminster). But their favorite activities are eating well and traveling (hmmmm, sounds familiar!), so we exchanged restaurant recommendations and phone numbers and talked about getting together for a meal somewhere. I vote for Barcelona, but I’m easy… That was a nice note to end the day on, and we were both feeling good when we went home—something had opened up in each of us, not just through that encounter but through our conversations and meditations over the past few days. Then when we got home we opened two letters. One was from Elizabeth Gibson, a usability specialist for AT&T who’s based in San Antonio but drives up to Austin for the monthly TechLunch lunches—gatherings of people from government, industry, education, and various disability groups who have an informal meeting to share news and information about assistive technologies and various accessibility issues. Elizabeth sent a truly mysterious Wallace Stevens poem, one I don’t even remember having read before; I’ll need to re-read and ponder. And then from Tom Roudebush, a recording engineer and photographer we’ve met through BodyChoir, came a card bearing what Anna says is a stunning photo of her and me at last April’s BodyChoir retreat. She says we look ecstatic in the photo—apparently we’re standing in front of the West House at Dancing Waters, leaning into each other, my arm around her, grinning to beat the band. It was wonderful to be reminded of that—it was such a beautiful, happy occasion, and, though we didn’t know it at the time, just a few weeks before the recurrence of my AML, the diagnosis that launched us into the current stage of this journey. Tom’s envelope also included a CD of songs sung around the campfires at the Kerrville Folk Festival several years ago—some great tunes, all the more powerful because they so strongly evoked memories of going back into the woods, the campgrounds, after the main show in the big amphitheatre had shut down, and going from place to place, campfire to campfire, to join the circles of listeners surrounding the circles of players who’ve been coming to Kerrville for years and years to share their new work with their friends and play the old ones for memories and laughs. I could feel the cool air, small the leaves and sticks and earth underfoot, hear the laughter and the singing, the joy of listening to terrific songs and singers until the wee small hours of the morning; it was lovely. One song that really opened me up was about a guy sitting in his regular place at this regular bar, nursing his beer, watching a young couple, not regulars here at all, who’d come in with a carefully wrapped pair of crystal goblets and a bottle of champagne (or maybe they bought the champagne at the bar; I might have missed that part). They poured the champagne, and drank, and held hands, and looked into each other’s eyes, oblivious that the whole bar is watching them, that everyone, including especially the narrator, is wishing his partner would still look at him that way. And then the narrator realizes that the whole bar is watching him now; something’s going on behind his back. He feels a hand on his arm and turns, and there’s his wife looking at him the way the young woman is looking at the young man, and that’s it. It made me cry—with gratitude and joy, because Anna looks at me that way so often and I’m so lucky to have her love and give her mine.

I’ve never doubted for a moment that her love, and yours, is a healing force, and that love is also what expresses itself in a very different form through all the medical procedures and protocols and rituals and equipment. Yesterday Larkin (who visited with Leonard a couple of weeks ago) forwarded me an essay from Tuesday’s New York Times that points in some very interesting directions about how that healing works. The article, “Friends for Life” by Daniel Goleman, takes its starting point from research demonstrating better recovery rates for patients who are surrounded by loved ones, then describes a mechanism called “mirror neurons,” cells distributed throughout the different centers of the brain, that actually allow us to take on another person’s attitudes and feelings, so that if you come into my apartment cheerful, confident that you see me doing well, my mirror neurons will start moving me toward sharing your attitudes and beliefs. As Goleman writes, mirror neurons “track the emotional flow, movement and even intentions of the person we are with, and replicate this sensed state in our own brain by stirring in our brain the same areas active in the other person. “ One implication of this work is that medicine needs to start addressing not just the patient, but the patient and his or her beloveds because they are not merely discrete individuals; they are a pair, a couple, a family—a community. This must be what makes it so powerful  when visitors come—including not just the scheduled visits like my dad’s, but also unexpected ones, of which there have been two since I last wrote. One of the visitors was Barbara Monroe, who came into the CWRL 15 or so years ago as a grad student needing summer employment and willing to give anything a try, then stayed for several years; she now teaches at Washington State in Pullman, where she does superb work with Native American tribes in the area. The other was Shawn Henry, a friend and colleague from the World Wide Web Consortium’s Web Accessibility Initiative, whom I’ve seen at conferences (including the one in Spain last November that marked the end of my chemo treatments and wrote finis to what turned out to be just a chapter in the leukemia saga. No man is an island, entire unto himself. No, nor woman.

It can work at a distance, too. I think this is what the 130 Letters have taught me—people using their creativity to send themselves here to us in emblematic form. A CD compilation from our niece Sarah, her husband John (another Buffalo boy!), and their baby Sophie, who’s closing in on being 10 months old. A wonderful letter from Rino Pizzi together with a CD containing one of his favorite pieces of music, the adagio from a late  Beethoven string quartet, a piece so slow, so controlled, so beautiful  that it’s almost unbearable—until suddenly it brightens, picks up, advances a while before returning to the slower, more wrenching pace. From Gail, another friend from BodyChoir, a nice note with a beautiful, beautiful poem by Naomi Shihab Nye about kindness. Bruce Shotkin, BodyChoir dancer who, at 70+, is committed to the goal of living to be 150 (like Ray Kurzweil, creator of computers that can scan printed text and read it aloud for people who are blind and others), sent a moving letter, as did other BodyChoir friends Alejandra Diaz-Beria and John Van Strien. There’s a CD of the poet W.H. Auden reading his work, sent by Tonya Browning and Mairi Reyer, who also sent a lovely card that appeared in a separate envelope. Tony Hilfer, a longtime colleague in the English Department (he came to Austin years before I did) and his wife, Jane, sent Christopher Smart’s mad, wonderful poem about his cat, Geoffrey.  Mark Van Gelder, a friend from BodyChoir who has been wrestling with diabetes since he was a young boy, sent the powerful poem he’d read at our celebration back in August: “Hoping for a Cure” is about the discovery that the cure, the healing, isn’t somewhere off in the distant future but here and now, at hand, in the body and breath. Sabrina Barton, friend, feminist film theorist, and former English Department colleague, wrote from Berkeley to wish us well and enclosed a gorgeous James Wright poem called “Blessing,” about watching a young horse in the pasture; the quiet explosion of its ending took my breath away. Anne Forrest, a former environmental economist who for several years made powerful and deeply moving presentations to my accessibility students about the effects of the brain injury she suffered in an auto accident almost 10 years ago, sent me a very funny invitation to “Camp Disability,” including a t-shirt with a built-in excuse on the back: “Too disabled to attend!” The package also included a book about the delights of napping, something I vow to pursue—in fact, I tried it this afternoon!  From Gene Rodgers of the Coalition for Texans with Disabilities comes a collection of inspirational quotations, and from Randolph Bias, a colleague from the School of Information who works in the field of usability, there’s a hymn modeled on one in the Presbyterian hymnal but substituting new words. Olin Bjork, a graduate student who’s worked with me in the CWRL and beyond, sends a letter about his personal commitment to accessibility and the efforts he’s made on an award-winning project about Milton’s Paradise Lost.  From Judy Sokolow’s grandson Jeremy Ollagnon, now living in Moscow with his parents and three sisters, came a card that made me laugh for a long time: it shows a squirrel who says, “When I heard that you are what you eat  I realized I was nuts.”  Clare Heinzelman, with whom I’ve happily shared a birthday for what will soon be 21 years, sent a sweet card; this year’s will be a big one for both of us! Anna’s mom, Marge Rogers, also sent a nice card from her new home outside Albany, NY, where she moved last year to be close to Patti and her family; another card came from Marsha, Patti’s husband’s ex-sister-in-law and her husband Rich, whose wedding reception we attended in Maryland a couple years ago.  Another card came from my dad’s friend Ruth, who is now undergoing radiation treatments of her own; we wish her well, too, of course. Sheila Armitage, a friend and  fellow-consultant of both Anna and my accessibility friend Kathy Wahlbin, sent a note with a wonderfully funny story about a woman she’d seen on a recent trip to Paris—smartly and professionally dressed in an elegant gray suit with what Sheila called a pencil skirt, meaning I assume that it drops in a straight, tight line from the hips, climbing onto her motor scooter and zipping through the Paris traffic; I imagine her zooming around the Place de la Bastille, headed for the rue St. Antoine, snaking her way among the Peugeots and Renaults. David Rose of BodyChoir and the Living Tarot troupe sends an astonishing Tarot reading, my first ever, with copies of the three cards he drew for me: the Fool, the Lovers, and the Chariot. And finally, Marc Holzbach of Zebra Imaging and his partner Dana Fries-Hanson of the Austin Museum of Art sent a fascinating and beautiful piece that’s been in their personal collection for more than 15 years—Stardust, a sound-sculpture by a New England artist who, in his 80s and suffering from Alzheimer’s, no longer produces new work. Stardust is a round, rough-textured object which is made of metal but feels like a stone; shaken gently, it makes a gentle, ethereal sound like music of the spheres faintly heard; the sounds get louder and take on a different quality when the piece is shaken vigorously, and there’s a resonant chime if it’s struck with a harder object.

So the mirror neurons work both ways. I send a post about the difficulties of waiting, waiting, and within hours the voices come back: we’re here with you, we’re waiting too. How astonishing. How beautiful.  “What sap. Went through that little thread/ to make the cherry red!”

Tuesday, October 10, 2006

Day 49: On waiting and chimeras

Just got back from the clinic a little while ago. The IV’s done for the day, and my blood counts are good: overall white count 5.6, neutrophils 2.63, hemoglobin 12.8, platelets 70 (up from 50 on Friday, which in turn had been up from 39 two days earlier), electrolytes all OK except for slightly low magnesium (I’ll resume taking the pills again at dinner tonight, hoping that this time my stomach will tolerate it better), liver and kidney stuff all OK. I’ve got a bit of a runny nose and a slight cough, but I spent several hours sitting outside on Saturday, and I’m told it’s the height of this season’s allergy season so it’s not really a surprise. The likelihood that it’s just allergies is heightened by the fact that there’s no sign of fever (I haven’t even made it up to 98.0 for days!). No rashes (which would be a possible sign of graft vs. host disease). Even my taste buds seem to be staging a slight comeback! The official word from Elaine, the APN in the ATC (sorry, couldn’t resist the alphabet soup—she’s the Advanced Practice Nurse in the clinic, who manages my case when the doctor’s not in), is that I’m “doing great.”

On Saturday afternoon we took my dad, who flew in from New York City on Wednesday afternoon and returned to Buffalo yesterday, to the Rothko Chapel. It’s close to the Menil Collection and not far from here—a simple building, both interior and exterior, with nothing on the walls except 14 abstract paintings by Rothko, who also designed the chapel itself, which opened in 1971. There had been a private service of some kind—perhaps a memorial service, since when it ended my dad saw someone carrying out a woman’s portrait—so we weren’t able to go in right away. Near the chapel is a bamboo grove surrounding a rectangular pool. It seemed very still to me—the only sound was a gentle breeze blowing through the bamboo, which rustled very quietly—but Anna said there were eddies in the pool, caused by underwater jets that sent them upward without breaking the surface. We sat for 45 minutes or so, talking quietly, and then went into the chapel itself.

I think we were alone in there for a little while. It felt very, very still, very peaceful. Anna led me to a bench in the center of the room and I sat down, and all of a sudden I was crying. Anna put her arms around me and cried with me, and then the tears subsided and we just sat there holding each other, breathing in the stillness. More people had come in—not many—and their footfalls echoed in a way that reminded me of footsteps on the stone floors in Notre Dame and other European churches I’ve been to, where it’s also quiet and cool and dark, though the coolness in those places comes down the centuries rather than being produced by air conditioning (I could hear the system humming quietly to itself in the background), and the glorious stained glass windows in the Gothic cathedrals are virtually the antithesis of the Rothko paintings. The paintings are so dark that they appear black—that’s how they seemed to both Anna and me when we went there several years ago—but to my dad they were alive with color and subtle variations, purples and blacks and even different blacks, and I loved hearing his excited description of how the colors changed from one panel to the next and how the subtle changes in the natural light coming from the ceiling picked up the brushstrokes and changed the paintings yet again. We stayed for 30 minutes, maybe, then drove back to Rotary House. I went up to the room to rest, and Myles went to his room to do the same. I felt both more peaceful and more highly emotional, more weepy, than I had in a long time.  

(Those first three paragraphs were written yesterday, Monday. It’s Tuesday morning now, Day 49—I’m 7 weeks old today!—and back in the ATC; the IV’s running and should be done about 11:30. Today’s blood counts  are good, too: overall white count 5.1, neutrophils 2.14, hemoglobin 12.4, platelets holding steady at 70, electrolytes all in normal range—including the magnesium, which so far hasn’t bothered my stomach. Today’s IV includes pentamidine, something I get every three weeks  to prevent pneumonia; I’m all for that, but its side effects can include nasal congestion, which I already have in spades, and nausea, which I’m just now experiencing—aren’t you glad you asked? So I’ve taken a Zofran to ward that off, and on we go.)

It came to me, sitting there in the peacefulness of the Rothko Chapel on Saturday afternoon, that I’m stuck on the challenge of not-knowing, of being reminded every day how uncertain it all is. The blood counts both address and exacerbate the challenge for me—they seem so precise, registering such minute detail, but they’re also so changeable, up one day, down the next and the next, up again, down again; it’s probably like that all the time for all of us, now that I think of it, but there’s no reason for most of us to check every day so we don’t. The medical team operates in a state of not-knowing, too; it seems that in many cases they don’t have direct access to direct evidence of things it’s vital for them to know. Is a touch of diarrhea just that, or is it a sign of graft vs. host disease? Or a bacterial infection, or something viral, or …? And so they study the entrails, look at the numbers, correlate the visible evidence with the submicroscopic, wait and see what if anything develops.

The not-knowing, or rather my discomfort with it, has made it difficult to write—that, along with the fact that my fingernails had grown to near-mythical length, a problem that Anna finally took into her own hands the other evening, trimming and filing my nails so at least they’re not claw-like anymore. But it goes deeper than that, though “deeper” may not be the right metaphor here. It feels like there’s nothing to write about, or at least it has been feeling that way. That’s not right, either: it feels like I don’t know how to write about what’s happening because so much of what’s happening is registered, however faintly, in those numbers and in our waiting, waiting and not-knowing.

The other night Anna described an exercise she’d gotten from one of her mailing lists; it sounded interesting, so we both tried it. As I remember it, the exercise went like this: Project yourself 30 years into the future. After contemplating that projection for a while, write a letter to your present self from the future self. What question(s) does your future self have forr present one? What will she or he say to you?

For me, the questions were about writing this blog—why was I holding myself back, why had I become reluctant to narrate the day to day course of events and share my thoughts and feelings about this experience, why did I believe that there was nothing “happening” that was worth recording and sharing with the people I love and who love me? I still don’t know the answer to all those whys, but there’s something there worth a closer look. It feels like there’s nothing much going on—we’ve settled into a routine, sort of, and I find it hard to write about the mere routine: it feels like nothing, and nothing is extraordinarily hard to write about. As Wallace Stevens said in “The Snow Man,” “One must have a mind of winter/And have been cold a long time …. To see nothing that is not there/ And the nothing that is.” (Which reminds me: one of the many things I’m grateful to the 130 Letters project for—grateful to you for—is the gift of poetry: so many people have sent so many wonderful poems that it feels like I’ve gotten poetry back, though I didn’t realize I’d lost it somewhere along the way, so that now I’ve got the double gift of beginning to recognize the loss and repairing it at the same time.

This just in! Anna and I just got back from dinner at Mykonos, a Greek place on Richmond that does a wonderful broiled snapper with lemon, olive oil, garlic, and “Greek herbs,” and I showed Anna the analysis of the bone marrow biopsy from last month. And the results are good: “The post transplant microsatellite polymorphism pattern is identical to the donor pattern which is compatible with successful engraftment. No chimerism is observed.” As I understand it, this means that the transplant has taken hold completely: The DNA of my bone marrow and the blood cells it produces is identical to Peter’s DNA. This in turn means that there is no “chimerism,” a condition that Wikipedia defines as occurring when “an animal has two or more populations of genetically distinct cells …”; chimerism “is either acquired through the infusion of allogenic hematopoeic cells during transplantation or transfusion or it is inherited.” What I had was an allogenic transplant—Peter’s blood-making (hematopoeic) stems cells were transplanted (via transfusion!) into my circulating blood, then took hold and “engrafted” onto my own bone marrow. They have now taken over; engraftment is complete. But this applies only to my blood, not to the other organs: a sample of saliva or organ tissue would show my old DNA.

This is where things are happening: in the blood and bone. And it’s already happened: that biopsy was done on September 21, Day 30—19 days ago. I had to wait nearly three weeks to hear the results, and even then I had to ask—and that was after Jay and had waited for three hours in my room at the clinic for Dr. Schpall (sp?), who is filling in for Dr. Andersson while he’s in Sweden visiting his family. Anna had to do a lot of waiting today, too, in addition to all the time she’s spent waiting for me to heal—she had gone to Indiana on Sunday for a business meeting with a major client, but this morning she got bumped from the first leg of her flight home, which meant that she reached Detroit 60 seconds too late to catch her connection to Houston, which meant she was stuck for a couple more hours, then had to go to another terminal to reclaim her baggage and get the car from the garage there before finally driving back here. Whew. What else am I waiting for? I don’t know. But I’m waiting. Thanks for waiting with me.