Day 6: So far, so good

This is Day 6, and it’s Monday. We’re still watching the blood counts. The white count was 1.3 this morning, and the absolute neutrophil count was 1.06. Low numbers, but both are higher than they were yesterday (1.2 and 0.99, respectively). Both hemoglobin and platelets are down substantially, though (9.7 and 52, as against 10.8 and 66). What does that mean? Is it cause for concern that my white count hasn’t hit 0.0 yet, indicating that my old, damaged bone marrow has indeed been wiped out in preparation for Peter’s healthy stem cells? We’re waiting so we can ask the doctors when they come in, to see if we can get more specific answers than we’ve gotten so far. But we don’t know when that will be: they’re often here and gone by 9:00 AM, but they have a meeting on Monday mornings and get a late start, and there’s no telling; it’s after noon and they’re not here yet. But arrival may be imminent: we were about to go out for a walk around the floor when someone said at least one member of the team had been sighted nearby… And here they are!

And the word is good! Anna asked some tough, serious questions, and we got much clearer answers: they see no cause for concern. I’m doing fine—the fact that I’ve felt so few side-effects is an indication that one important goal of the treatment regimen is being met: minimal side-effects. They explained that it isn’t strictly necessary to wipe out my old bone marrow entirely in order for the transplant to succeed: they need only reduce my marrow to a low enough level that the new immune system, kicking in can kick my remaining cells out for good. So the white count may never fall to zero (though it may yet do so), and I may not feel as weak and ill as I did last year or earlier this summer (though I might). If my white count rises for three days in a row they may take that as evidence that engraftment has occurred and release me from the hospital shortly thereafter. But the real test will come on Day 30, when they do a bone marrow aspirate and biopsy: testing those samples will tell us whether the cells in the bone marrow are mine or Peter’s, or (possibly) some of each.
The team left the room. We sighed a big sigh of relief and went for our walk around the halls. Anna said the lesson for now is that things don’t have to be hard just because they can be hard. And they certainly can be hard: While on our walk we met another patient, a man whose wife and Anna have become friends. He’s having a much rougher time than I am so far: he doctors have been having a hard time getting him into remission, and the chemo is apparently very hard on him, too (different drugs than I got this time; the same combination I had earlier in the summer, when I ended up in Seton). I wish him all the best; the same for everyone else on this floor, too, and for me: this could easily turn into a very different kind of experience. But for now it is what it is, and I’m grateful that so far it’s been so unproblematic.

A small mouth-sore began to form late yesterday afternoon, and the nurse confirmed that there were “little ridges” on my tongue, a sign that more sores are on the way. I know, Too Much Information; but these are the little details, the stuff of conversation… The best treatment for these mouth sores, after four and a half billion years of evolution and billions of dollars in cancer research, is to rinse frequently with a mixture of baking soda and salt in water. Go figure. Annoying as it is, the mouth sore is probably a good sign, a sign that the chemo I received the first four days here is working as it should. And if this is the worst side-effect I experience, I’ll be one happy man.

We’ve gotten some more amazing letters and gifts in those brightly colored envelopes. Arielle Ollagnon sent a lovely hand-drawn card. The second four-year-old to contribute, she’s the granddaughter of our good friend Judith Sokolow, Anna’s housemate at Sarah Lawrence, whom I met in 1982 at the same party where I met Anna. Jason Craft and Mike Craigue sent a Superman card (Jason wrote a splendid dissertation about, among other things, comic-book superheroes) enclosing a CD with some of their favorite music; one of my favorites is Louis Armstrong and Ella Fitzgerald having a great time with “A Fine Romance.” David Macdonald, a colleague in the Web Content Accessibility Guidelines Working Group who lives in Ottawa and travels the world singing Christian music, sent a CD with three of his own compositions. There was a nice card from Wick Wadlington and Elizabeth Harris, colleagues and long-time friends from the English Department—what Anna described as a very attractively photographed margarita, which was cut out at the top of the card so I could trace its shape (including the lime on the edge of the glass) with my forefinger. It said, “The margarita at the end of the tunnel.” And they delivered it in person! There was also a card from Peg Syverson, my friend and colleague in Rhetoric and collaborator in the Computer Writing and Research Lab and elsewhere, who became a Zen priest two years ago. The card showed a tiger describing meditation as being like ignoring people, except that you do it sitting cross-legged on the floor. But also from Peg was a beautiful heart-shaped stone of highly polished jasper, a smooth, variegated purple, shiny and cool and rounded, to remind us that she’s holding us in her heart. Jodi Jinx, a BodyChoir friend who drives in from College Station (nearly two hours away) to dance with us, sent a small heart-shaped stone hanging from a fine chain as well as a Billy Collins poem about the Zen of shoveling snow that I liked very much. Phil Barrish and Sabrina Barton and their son, Eli, English Department colleagues who cherish their memories of time spent on Cape Cod as much as I do, sent a nice note acknowledging that we’d all rather be there right now, and included several haiku. And then, to my amazement and delight, there was France in a Box, from Mafalda Stasi and Tonya Browning and Mike Morrison. All three were in the CWRL in the mid-90s—Mike as our very first computer professional, Tonya and Mafalda as grad students. Now married, Tonya and jmike were visiting Mafalda in Paris a few weeks ago, and as they traveled around the country they created a zany cornucopia that immediately took me back to crazy projects in the Lab: MOOs and MUDs and multimedia, the orgasmic chair that Mafalda created for the Yacov Sharir/Diane Gromala class on Virtual Environments, Cyberspace, and the Arts that she and Tonya told me about with such excitement that I just had to go with them and sit in for the rest of the semester. France in a Box contained (in no particular order): a cardboard crown, a music box that plays “La vie en rose,” a souvenir medallion from a château in the Loire, an Eiffel Tower keychain, a book called 100 Great Books in Haiku, a cube of olive-oil soap from Marseilles, and a little bird that chirps very nicely whenever it’s moved (I’m no birder, but maybe it’s an alouette, a lark, like the one in the song). It was the sheer unexpected zaniness that did it; I’m still laughing. Greta, another friend and spiritual seeker from BodyChoir, sent a nice note thanking us for the things we thank all of you for. And there was a letter from someone I don’t know and will probably never meet, a California attorney whose young daughter has been having a tough time with leukemia for the past two years: having found the Leukemia Letters on the Web, Sally Lanham (who also maintains a blog about her experiences and those of her daughter) sent a St. Anthony’s card (the patron saint of lost things (and a nice note saying she’d continue to “drop by the blog” occasionally.

And there were visitors, too: Wick Wadlington and Elizabeth Harris spent some time with us on Saturday and Sunday, with a visit to Wick’s new grandson in between. Wick told us about his volunteer work as a court monitor in Georgetown, where once a week he attends hearings on domestic violence cases, taking detailed notes on the proceedings with the goal of encouraging Williamson County to treat such cases more seriously and appropriately. Elizabeth read me 15 or 20 pages from different parts of the novel she’s working on, a fascinating, tightly written, subtle story that I want to read the rest of. It’s been a long time since I heard Elizabeth read, and I’m very honored that she chose me as her audience. On Sunday afternoon a new BodyChoir friend, Rebecca Farr, called to say that she was in Galveston and could I have visitors? I said yes, so she came and found me and we had a lovely talk for an hour or so (actually I have no idea how long it was) until she said she had to drive on back to Austin.

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.

Day O from Anna

9am Tuesday, Anna here from Houston MD Anderson: Just found today's schedule. John will receive brother Peter's stem cells in a transfusion at 10am. Should take 1-2 hours, no pain or drama, perhaps a funny "cream corn" smell/taste from the preservative (they froze cells 3 weeks ago and thawed them out:)--John'll be sucking on hard candy. Doctors will be monitoring him for a reaction to the cells or to the preservative. He is currently eating an omelette. Last night, we lay together in my Murphy bed in the room watching "Under the Tuscan Sun". All is calm so far. Love you all and feel your presence in our souls.

11am, Transplant completed. The cells in small packages on the IV pole were a beautiful rose wine color or maybe a light pinot noir. There were 3 bags representing many millions of cells. Hope Lipnik, Jewish chaplain and spiritual celebrator of ecstatic traditions from all sources made a ceremony--starting with a medicine circle we made on the blankets around his body; there were stones and shells and gris gris from the windowsill altar--then Hope said a beautiful prayer in Hebrew and blew on the shofar, ram's horn, used in Jewish ceremonies. We then played from music from a Body Choir dance program called Surrender into Love. Included slow Celtic through Maria Raita from Brasil, through Bruce Springsteen doing "Mary Don't You Weep" through Lyle Lovett doing "What I Say." Hope and I were dancing and John did a little dance move with his hands in bed. He had been sedated with Benadryl to prevent an allergic reaction but was able to pray and participate in the ceremony. Hope said a prayer as she and I touched to bless each of the 3 bags of cells and we did energy healing around John's body. John held a beautiful smile the whole time, then Hope and I danced to the New Orleans music mix playing. One of the doctors was from New Orleans and praised the music selection. We felt the love from all of you!!!

We realize this is just the beginning of a long process. White cell count will go to 0 (and red..and platelets go very low as well). John will need transfusions and they will continue to give immunosuppressants so his body doesn't reject the new cells. We don't know what exact form these adventures will take, but we'll continue to take along your healing love and kindness, and we are grateful for this smooth beginning of the voyage.

xoxoxoxoxoxo, Anna and John

Celebrating Peter's birthdays

Yesterday, Sunday, was Day -2. It was also my Brother Peter’s 52d birthday! So today, on Day -1, I want to celebrate him and his incredible gift to me of the stem cells that I’ll receive tomorrow, Day 0.
Last Monday, the 14th, Peter received a great early birthday gift of Joy in the form of a new guide dog named Joy! Joy is from Fidelco, a Connecticut-based school that specializes in training dog/human teams in the home environment. Joy is a German shepherd, probably 70+ pounds, and Peter reports that they are very happy together and still in the training phase.  Nevah, Peter’s wife, sent us a photo of Peter with Joy and daughter Hannah, and Anna put it up on the altar of precious and meaningful things; certainly Peter and Joy seem very happy here!

When Peter and I were little, our parents would wake us up extra-early on our birthdays by coming into the birthday boy’s room and singing Happy Birthday. Then would come a treasure hunt through the house, clue leading to clue, suspense building until the gifts were found.  There was a different treasure hunt for each of us: the boy whose birthday it wasn’t got a shorter hunt and a smaller present, but in any case the search was on. Then we would eat breakfast and disperse to school and work. In the evening (and sometimes again on a weekend if there was a birthday party), my mom would make a birthday cake from scratch in (almost) whatever shape the birthday boy had requested—one of her triumphs involved a giraffe, complete with long neck and great patchy spots on the skim. Another (not for one of our birthday’s but for Lincoln’s birthday, now folded into the bland President’s Day) was a log cabin. I don’t remember the specifics of any particular birthday, but I do remember that one year (maybe 1959 or ’60?) Peter somehow managed to get himself five separate celebrations for the same birthday, which is some kind of record—if not globally, then at least in the Slatin family.

Peter and I haven’t been physically together for either his birthday or mine for many years, and this year is no different in that respect: he’s in New York and I’m in Houston But of course this year is different: this year, Peter’s given me a wonderful gift for his birthday, the gift of millions of stem cells that, once infused into my bloodstream through my CVC line, will become engrafted, take hold in my bone marrow to produce the cells that carry oxygen, the cells that fight disease, the cells that make the blood clot when the  body is cut, the cells that sustain life. That will mean we can celebrate August 22 as our new joint birthday. More parties! Thanks, Peter; I love you.

Quick update
It’s Day 0—Tuesday. The nurse, Melissa, just came in and told us that the time for the transplant/transfusion has been set for 10:00 AM Central time. She said they’ll do the pre-medications, Bendadryl and Solumedrol, starting at 9:30 (about 10 minutes from now). We’re ready. I love you all. Thanks so much for all your love and your support and your prayers. More to come!

Day -3: Visitors leave, we stay, more to come

It’s Saturday evening, Day -3. Anna is out at dinner with Mason and her sister, Patti, who flew in yesterday from Albany (Mason arrived on Wednesday evening). Jeff and Toni are headed back to Austin; they too came in Friday late in the evening, visited me then hung later with Mason in our suite at Rotary House, then went on to Baytown to celebrate Jeff’s father’s 80th birthday; then they came back to Houston around mid-morning today and visited with me and Mason for several hours.

Today was the last of my pre-transplant chemo, and last was also the end of the “extra” blood draws to monitor busolfan levels in my blood (. Much to our relief, this meant that the “extra” catheter in my right arm could come out, giving me back free use of my right arm and hand. An interesting young woman named Keena did the last two blood draws (all 5 or 6 of the previous ones during the day had been done by Betty, and the catheter—or my vein—had given her a hard time up until the last two). Suzy, last night’s night nurse, took out the catheter, which involved carefully removing what seemed to both of us like miles and miles of tape that had held the catheter in place; Suzy proceeded very carefully and made liberal use of alcohol to help with the tape removal, so that it wouldn’t take the skin off my arm in the process. That was at 10:30 or so. Earlier, when Suzy came in to introduce herself and make her preliminary assessment of my condition, I had gotten her to agree that she would hold the lab the who would be coming to draw my morning blood sample until 5:00 (he had come at 3:30 the previous night), so we reminded each other of that commitment before she went to get me my Ambien; and I had a good sleep until she reappeared at 5:00, accompanied by the lab tech and holding pills in her hand, to get the morning started with a good dose of fludarabine and another of busolfan. Anna was able to sleep through it all on her Murphy bed which is now a permanent “sofa” in our hospital room.

I’m a few days behind in listing the things that have come to us through the 130 Letters project. We’re still at the stage of opening two envelopes a day—there are so many that this will continue, I think, for the whole time I’m in the hospital!

Two of the envelopes contained cards from Colleen, a BodyChoir friend who’s been showing me ways to loosen my back and shoulders since we started going to BodyChoir more than four and a half years ago. The first card showed a pair of cats staring into a goldfish bowl at the fish swimming inside; inside was a message looking forward to the time when we would all be having lunch together at El Sol y la Luna after BodyChoir. The message inside the next card envisioned dancing at BodyChoir again. Maybe we got the sequence backwards! But of course the order doesn’t matter. What matters is that dancing on Sunday mornings and having lunch together afterward go very well together, and most importantly, that envisioning these things gives concreteness to my attempts to imagine Life After Transplant. Thanks so much, Colleen! We also received a CD compiled collaboratively by two more BodyChoir friends, Anna’s sisters in the Facilitators’ Circle, Valerie and another Anna. This Anna works at UT but plays at in drama and writing workshops and various other artistic and spiritual venues. Valerie is a violinist and teacher of young violinists. Both Valerie and Anna love music and putting music together for our dance. All the songs on the CD use the name of one or more colors as their theme.

Christine, a watercolorist, editor, tango dancer, poet (and more) sent another object in the same family as the medicine bag she made and gave to me at the celebration two Sundays ago. It’s beads and bits of cut, shaped paper  mounted on a cardboard wreath, accompanied by a beautiful letter about dancing and circles that illuminates Christine’s chosen title : “The Unbroken Circle.”

It’s Sunday evening now (I wrote the earlier part of this in the morning, while Anna was driving Mason and Dillon to the airport). Since then, the nurse, Rashad, has started me on a drug called Tacrolimus to ward off (as much as possible) Graft vs. Host Disease following the transplant. And we’ve had good news about Dillon: Mason had called earlier from the plane to say that he’d brought Dillon aboard with no fuss or fanfare. He had accomplished this by going straight up to the 1st class line and explaining the need for Dillon to accompany him in bulkhead. He called again a few hours later, after he’d met Dan and Diann at baggage claim in San Francisco (where Mason lives; not too far from Diann and Dan’s home in Richmond) so they could take Dillon—and he reported Dillon’s joyful leaps and bounds when he saw them—a magical moment  I’d been counting on even more than I knew. Dan called just a few minutes ago to say that Dillon is now sleeping in their backyard, having worn himself out racing around the yard, finding all his old puppy toys and scattering them strategically everywhere, and struck at least a temporary truce with the two cats. Oh, it makes Anna and me ridiculously and gladly happy to hear this! And I’m so grateful to Mason for getting him there safely!!!

Patti left this morning, too, back to family in Albany—her husband, Dennis, grown daughters Sarah and Rebecca, and Sarah’s eight-month-old daughter. Anna loved being with her sister here—At one point their brother Rick from Houston was here too and they all went out to dinner with Mason and brought me a lovely peach tart for dessert. Meanwhile, early this afternoon Anna opened another letter, and this one was from Dennis, Patti’s husband of many years. Having sold the last of a small chain of toy-stores several years ago, Dennis is now pursuing his passion, teaching American history to middle school students in a small district near Albany. He sent two audio books—John Stuart’s America, and a collection of Prairie Home Companion broadcasts after 1997. The first 30 minutes of John Stuart had me laughing in that grim way that comes with the Daily Show on Comedy Central. (Note of surprise and dismay: the Comedy Channel isn’t part of the cable package that MD Anderson buys from some vendor or other!)

Today’s second letter was from Toni, again a friend from BodyChoir and a deeply committed environmentalist. She wrote an actual letter! Which turned into a lovely  meditation on the importance of unions—not the labor kind, the spiritual and romantic kind. Of course Anna and I agree!

Day -5: Chemo, opthalmology, and messages

Today (Day -5 at M.D. Anderson) was the second day of chemo. It started very early again, with a blood draw at 4:00. This time I wasn’t awake—because I had asked Steve, the night nurse, for an Ativan at about 1:30, since I couldn’t get to sleep even though I had taken an Ambien at about 11:00. I had stayed up talking to Mason, enjoying it so my energy level remained high, then merged into a generalized low-level anxiety that I couldn’t dispel on my own. There was probably something I should have stayed up to contemplate (gee, what might that be, he wondered), but I wanted to get some sleep so I could handle today’s chemo and what I expected to be a long sojourn in the Ophthalmology Clinic—a visit that was originally scheduled for last Tuesday but which I declined first because it was the only thing that required our being in Houston that day, there was nothing on the schedule for the following day, Thursday and Friday promised to be pretty heavy, and we were already bracing ourselves for coming here this week. The other reason for not coming to Ophthalmology last Tuesday was my brother Peter’s terrible experience there: he was there for something like six hours!, most of which was spent waiting for the doctor, who is dreadfully overbooked. So my visit had been rescheduled for today, when I would be there as an inpatient. This turned out to be a good thing for me, and probably contributed to the agonizing wait-time for others: I only had to wait about 30 minutes before being called in, and once in there it was OK. This was partly because I had Dillon with me! Yes, Dillon was with me: Anna had had the brilliant insight that since I would be leaving the transplant floor she and Mason could bring Dillon to meet me at Ophthalmology. So they did, and that made me happy—even though Dillon was mad at me at first and wouldn’t look at me or come too close: he was pissed that I had ditched him for two days, simply abandoned him to the tender mercies of people he loves… But he had warmed up by the time we left the clinic, allowing me to scratch his ears and rub his neck, and settling onto his side so that the full weight of his back rested on my foot.

At the Ophthalmology Clinic, Galima (sp?), the assistant, did the preliminary workup. She asked when my retinitis pigmentosa had been diagnosed, and, remembering that Peter has the same condition, asked about other cases that might have occurred in our family. The only two I know about are those of my mother’s half-brother Abe and half-sister Minni, both a good deal older than my mother, who had been born to a different mother than they. (Interestingly, Minnie had only light-perception at an early age, while Abe retained some useful vision even into his 80s.) Then Galima did some simple tests designed primarily, I think, to find out whether my description of myself as having only light-perception matched the professional use of the term. Then she tested for glaucoma (none) and tested my tear ducts—apparently one effect of Graft vs. Host Disease (GVHD) is some sort of blockage of the physical capacity for tears (and in fact we met a young woman in the waiting area to whom exactly that had happened; she said it had been a year since transplant, and that was the only sign of GVHD; she’d take it!).. Galima dilated my eyes and left me semi-darkness to wait for Dr. Kim, a very pleasant woman who, as it turned out, had trained at Harvard under Dr. Elliott Berson, the first ophthalmologist I had consulted about my retinitis pigmentosa (at this point Word's spell checker suggests pimentos) c, (I had made annual visits to Berson’s cramped, crowded clinic at Massachusetts General from the mid- to late 70s, before moving to Austin in 1979).

I asked Dr. Kim what she was looking for, and got a very frank answer. In part she was trying to establish a good record of my current visual condition that can serve as a reference point if I get GVHD that affects my eyes. But in part she and Dr. Andersson were acting in accordance with their researchers’ instinct to gather interesting data that might come in handy some day. My brother and I had presented them with an opportunity that was too good to pass up—to study two siblings, donor and recipient, who share another unusual genetic condition. It sounds intriguing. But is it intriguing enough to be worth making Peter sit there all those hours? Or me, for that matter, even though I only spent a couple of hours in the clinic? What’s the likelihood of their finding enough sibling pairs who share these characteristics to build a meaningful study? That came to me as an afterthought. At the time I found Dr. Kim and the honesty of her answer quite charming.

When Dr. Kim was finished with her examination she turned me over to another assistant, Andre, who would take some photos of my eyes. He tried to do two sets. First he tried OCT, which I think stands for Optical Computer-assisted Tomography—i.e., a CT scan of the retina. Then he took several fundus photography of the retina. I had never heard of OCT before (I confess that my last visit to an ophthalmologist was six years ago, and if he had a device capable of such things he didn’t use it on me). But the attempt was a waste: I couldn’t track the flashing green light he told me to look for on the screen, and if I couldn’t do that he wouldn’t be able to produce a meaningful scan. The fundus photographs went a little better, though the procedure made me wish for a couple of minutes that I didn’t have light-perception: those flashes were very intense!
But then it was over, and I was back out in the waiting area with Mason and Anna and Dillon, waiting for someone from Transportation to come and wheel me back up to my room the way they had brought me down. But then it occurred to us as we waited that we didn’t have to wait! The weakening effects of the chemo still haven’t hit (thankfully), and here was an excellent opportunity for a good, long walk—and to spend more time with Dillon, too! So we walked, and it was just fine. When we got to the 11th floor, I said good-bye to Dillon as I had the other night, and then Mason walked me to my room. Shortly afterward a man named Mari arrived from the Physical Therapy department; he took me through a number of leg exercises that can be done while sitting down, and then he headed out.

Earlier in the day I had a very good conversation with Hope Lipnick, the Jewish chaplain here. At first I was going to say that I was surprised by my willingness to talk with her about God, especially in an explicitly Jewish context. But on second thought I’m not so surprised, just bemused: although it’s not a conversation I’ve participated much in up this point, it’s certainly the case that much of the work I did with Bhagirit in May and June was about God, and it’s certainly true that I’ve been thankful for the prayers of people who’ve kept me in their prayers these past 14 months, and it’s certainly true that I’m impelled to explore matters of the spirit in a way I’ve never consciously done. So maybe it’s time for me to think about this, and to acknowledge my uncertainties and doubts.

Today there were two envelopes marked “3.” Both contained music! The one we opened this morning was from Marko, a young Austin filmmaker and DJ who is the son of our friends Ivo and Ivana. It was an Aarvo Part CD, unearthly and beautiful. We opened the other one this evening: it’s another CD, this time of recent pop music chosen by Brian and Mia, friends from BodyChoir—they called it “music to groove to!” And so it is. It was fun playing it after the Aarvo Part.

Day -6 (Wednesday): Time for your letters

Your “letters” are simply amazing, and wonderful! And plentiful: we asked for 130, one for each day we’ll be here in Houston, but so far there are something like 160, and more keep coming. Thank you so much!

In fact, so far we’ve opened five envelopes! There were three that Diane had labeled “1,” and two that she’d assigned to “2.” Each has been different from the others.

The first was from honoria, a mail artist, author of the first cyberspace opera (honoria in ciberspazio, which was itself a mail art project),  former graduate student (mail art was the subject of her dissertation), and staffer at the at what was then the Institute for Technology and Learning (now the Accessibility Institute). Of course she sent a piece of mail art: a beautiful hand-painted card of intensely red poppies done in homage to the 19th-century American painter Arthur G. Dove.

The second envelope numbered “1” was from Elke and David, two friends from BodyChoir—David has created a land trust to preserve Jacob’s Well, a deep, spring-fed pool about 30 miles from Austin, and to restore the lands around it; Elke has been providing excellent advice on nutritional supplements as well as giving me wonderful,  healing treatments that combine the ancient principles of acupuncture with contemporary technology. Their message was especially for Anna; it was a pendulum on a fine chain, a cool, smooth weight that can be worn as a necklace or watched in fascination as the arc of its swing diminishes with each return.

The third “1” remains a mystery: it’s a cigar box, carefully and lovinglhy decorated with shells, leaves, dried roses, aphorisms, quotations, more shells, references to St. Joseph. Some of the writings appear to be signed “Rael.” Who are you who made this beautiful and mysterious box?

Those were yesterday’s wonderful surprises. Today there have been two more. The first is from Loretta, a friend and outstanding colleague in the Web Content Accessibility Guidelines Working Group, who sent something beautiful to the touch and completely in keeping with the pleasure we take in dancing with BodyChoir” a soapstone figurine made in Zimbabwe, showing a couple dancing, so completely entwined with each other that I at least can’t tell where one ends and the other begins, yet LIGHT AND open AND SILKY-smooth. The other is a letter from Gordon Montgomery, an Irish usability expert who’s now actively involved in accessibility work, talking about how I was implicated in his decision to move to Austin  and narrating a bit about the work he and I did together last May, the day after I learned that my leukemia had relapsed.

Each of these things has moved us to tears. They’re individually beautiful, but it’s much more than that: it’s the love they represent that makes them so moving, that animates the objects and the words and brings the people who sent them into the room with us. Thanks again.

And, oh, yes! I started chemo this morning. It was early—very early: about 4:30 AM. But it’s OK; I was awake, though I hadn’t meant to be. By 9:15 it was over for the day, and a different  but related mini-drama began: would the catheter that had been inserted in the crook of my left elbow last night actually do what it was supposed to do? Would it yield up a useful sample of my blood so they could measure the levels of busolfan being absorbed in my body? (They would need to draw blood some 10 times at different points throughout the day.) The short answer is “no,” though it took longer than that to settle the question. Suffice it to say that that catheter is gone, replaced by a similar one in my right arm, and the right arm is also taped to a split that doesn’t exactly prevent me bending my arm (and thus possibly injuring the catheter) but does at least remind me to be more careful. This one is supposed to last all the way through Friday night…

The effects of the chemo haven’t been manifest yet. I’m grateful for that, too. And Mason’s plane gets in soon! It’ll be so good to see him.jslatin     

Were inside what Ann

We’re inside what Anna calls the rocket ship now: I’m in my hospital room, and so far nothing’s happened except that the assistant, Benson, came in and took my vital signs and my weight (and took my word for it when I told him how tall I am). And Anna and JayByrd have been working hard to get the room set up. And I had a tearful good-bye with Dillon just as we came off the elevator up here—he couldn’t come any farther. I know he’ll be fine and have a wonderful time with Dan and Diann, and with Lela and JayByrd, and with Mason, and of course with Anna—he’ll see all of them at various points between now and Sunday when he leaves with Mason. It just makes me sad to know that I won’t see him for a month—that, and I think it’s one of the things that makes me realize not just that my life will be different from here on out, but that it’s already changed.

And the nurse, Nicky, came in a little while ago with a whole raft of pills: two different antibiotics, an antiviral, six Dilantin (because one of the chemo drugs I’ll start tomorrow, busolfan, can cause seizures), and a Pepcid (to counteract all the other stuff I just swallowed). In a while someone from the IV Team will come in and start a peripheral catheter in my arm, which will be used to draw blood samples so they can measure the effect of the busolfan over the next four days. At midnight Benson will come in again to take my vital signs. And at 5:00 (gasp!) Nicky will be in to take my vitals, draw blood, and start the first chemo, fludarabine. Then, at 6:00, they’ll start the busolfan. That will end at 9:00, and the chemo will be over for the day. Why so early? You ask. And Nicky says, because the research nurse is here in the morning. Whew.

This is called Day -7 because they do a countdown to Day 0, which is Transplant Day: next Tuesday, August 22. After that we’ll start counting up.

OK, that’s it for now. Here’s our room number and phone number:

Room 1137
Phone: 713-745-8698

M.D. Anderson Cancer Center
1515 Holcomb Blvd.
Houston, TX 77030


A huge, huge thank you to JayByrd and Lela for coming with us today, and for helping to get the hotel room and then the hospital room set up so quickly and beautifully, and for taking care of Dillon tonight. You guys are wonderful!

Day -7: Aboard the rocket ship

We’re inside what Anna calls the rocket ship now: I’m in my hospital room, and so far nothing’s happened except that the assistant, Benson, came in and took my vital signs and my weight (and took my word for it when I told him how tall I am). And Anna and JayByrd have been working hard to get the room set up. And I had a tearful good-bye with Dillon just as we came off the elevator up here—he couldn’t come any farther. I know he’ll be fine and have a wonderful time with Dan and Diann, and with Lela and JayByrd, and with Mason, and of course with Anna—he’ll see all of them at various points between now and Sunday when he leaves with Mason. It just makes me sad to know that I won’t see him for a month—that, and I think it’s one of the things that makes me realize not just that my life will be different from here on out, but that it’s already changed.

And the nurse, Nicky, came in a little while ago with a whole raft of pills: two different antibiotics, an antiviral, six Dilantin (because one of the chemo drugs I’ll start tomorrow, busolfan, can cause seizures), and a Pepcid (to counteract all the other stuff I just swallowed). In a while someone from the IV Team will come in and start a peripheral catheter in my arm, which will be used to draw blood samples so they can measure the effect of the busolfan over the next four days. At midnight Benson will come in again to take my vital signs. And at 5:00 (gasp!) Nicky will be in to take my vitals, draw blood, and start the first chemo, fludarabine. Then, at 6:00, they’ll start the busolfan. That will end at 9:00, and the chemo will be over for the day. Why so early? You ask. And Nicky says, because the research nurse is here in the morning. Whew.

This is called Day -7 because they do a countdown to Day 0, which is Transplant Day: next Tuesday, August 22. After that we’ll start counting up.

OK, that’s it for now. Here’s our room number and phone number:

Room 1137
Phone: 713-745-8698

M.D. Anderson Cancer Center
1515 Holcomb Blvd.
Houston, TX 77030

Wrung out: leaving Houston last Friday

We both feel wrung out and exhausted, yet nothing has really “happened” today. We got the Transfusion unit in the ACB (ambulatory Care Building) at 7:30 so they could confirm that yesterday’s chest x-rays showed the CVC (central Venous Catheter) in proper position and change the dressing, and so Anna could demonstrate that she understands how to clean the three “lumens” and flush them with Heparin. By the time we were finished with that, it was time for Anna to be on a conference call, so we stayed in the waiting area (which is actually pleasant—plenty of natural light, broad corridors, and blissfully quiet: no TVs blaring Fox News or CNN or Jerry Springer, etc., etc.). While she talked with her clients, I typed up some notes about the kinds of support I’ll want from hospital staff that they might not be expecting—e.g., orientation to the room, to the whole floor in that part of the hospital; avoidance of purely visual cues when giving instructions; help navigating the halls when it’s time to walk, etc. When Anna was done with her call we went downstairs to the cafeteria, and I showed her what I’d written. She tweaked things a bit, and then I emailed the end result to Eric Koval, the transplant coordinator, since we’d be meeting with him at 1:00. By then it was time go up to our meeting with Dr. Andersson, where we would get the final “yea” or “nay” on the transplant, based on the results of the tests done last week when JayByrd and I were here.

OK, I retract the bit about “nothing happened”: upon review, we did quite a lot! I wrote that first paragraph yesterday (Friday) afternoon, sitting in the hotel lobby, waiting for Anna, who was (a) finishing up a call with a client and (b) overseeing the packing of the car so we could drive back to Austin; this also involved (c) making sure that the stuff we were bringning back to Austin was properly separated from the stuff we wanted to store until our return to the hotel…  Especially since the heart of the day was the visit with Dr. Andersson, followed by a talk with Horge, the research nurse who finally “randomized” me and told us what date I should check into the hospital, followed by a session with Eric, the transplant coordinator, and Jacqueline, a nurse from the floor where I’ll be, to go over what they and we should expect of one another. “Wrung out” makes sense now.

Dr. Andersson gave us wonderful news: the MRI showed that the tumors in my brain are gone, and the lumbar puncture showed that my cerebrospinal fluid is clear of leukemia! The bone marrow biopsy showed that my bone marrow is similarly clear. And my heart and lungs are functioning well, and my sinuses are free of infection. This really is amazing: just three months (almost to the day) after my terrifying relapse was diagnosed, all signs of it are gone. But there wasn’t time to celebrate the news yesterday, though Anna caught the fact that I was close to tears with relief and pointed out to Dr. Andersson that I was happy. All that wonderful news was only prologue: it means that all systems are “go” for the bone marrow transplant, and we’re about to step aboard what Anna has taken to calling “the rocket ship.” We talked a bit longer, with Dr. Andersson offering reassurance about the intensity of the chemotherapy I’ll undergo: he claims that it is, if anything, milder than what I’ve had so far, and less likely to result in dangerous complications. He prdicts that we’ll be “bored” in the hospital, which actually sounds pretty good to me given the terrible images I’ve been conjuring up (which come mostly from last year’s month-long stint at St. David’s, during much of which I was too weak even to change my position in bed without assistance). Then he  left the room so we could talk with Jorge, the research nurse, who explained a little more about the study in which we’re participating. And then he left to go and perform the randomization that would yield the information we’ve been so frustrated not to have till now: my admission date to the hospital. He arrued us that he’d back in just 5 or 10 minutes, and I suppose he was, but if felt longer, and actually it was Anna, who had gone out into the hall to look for Eric, who came back in with the news that we would check in on Tuesday (the 15th).

So that’s it: we check in the afternoon or early evening of the 15th (after I go to the lab to have more bloodwork, since this week’s tests will be out of date by then). They’ll start me on chemo the next day, using two drugs, busolfan and fludarabine. The chemo will continue for four days (through Saturday the 19th), followed by two “days off” (I’ll believe that when it happens!). Then, on Tuesday the 22d, the Big Day: the transplant itself will occur. Peter’s stem cells will be infused into  my system through the CVC, much as other transfusions I’ve received in the past were infused through my PICC line or PortOCath. It’ll take a few hours—I like to think, for symmetry’s sake, that it will be about as long as it took to harvest the cells from Peter 10 days ago.

We were assigned the 15th as an admission date because the randomization put me into the control group, patients whose dosage of busolfan is determined in the “traditional” way, by body weight; for the experimental group, dosage will be determined in a more complex way, by tracking the extent to which each individual’s body processes the drug. The transplant team will also monitor this “exposure” rate for patients in my group, however, and dosage will be adjusted in cases where exposure is either abnormally low (meaning that the drug isn’t being absorbed well enough by enough of the body) or abnormally high (meaning, I guess, that the body is absorbing the drug too quickly)). Writing this, I realize I don’t understand it; I know little more than that I’ll be wearing a second small catheter in my arm for the four days of chemo, so they can take blood samples that aren’t confused by any residual drugs in the CVC through which they’re infused. And I’m ambivalent about being in the control group: though Andersson assured us that they have no hard data yet to confirm that the experimental method produces even better results than the traditional one, the working hypothesis is that it will, and the fact that they’re already adapting the traditional method lends weight to that.  I just checked in with Anna, suddenly wondering whether I should drop out of the study and just insist on  the experimental procedure; but she reminded me that I can’t do that—since it’s an experimental procedure, it’s only available to people participating in the study. It just so happens that I ended up in the control group—but even in the group I’ll have the benefit of monitoring beyond what’s usually provided in the “standard” treatment regimen. Her saying these things calmed me down—it may have been just a little “I don’t wanna go!” flaring up.

At any rate, after the conversation with Jorge was over we waited a few more minutes and then met with Eric (the transplant coordinator) and Jackqueline, a nurse from the BMT floor. Jacqueline talked a bit about the routine on the floor, told us that there is currently a patient who’s blind up there, and indicated that she didn’t see any problems with the issues we’d raised in our email to Eric earlier in the day (which he had given to her as well). Then Anna asked if she might actually get a look at a room (on her previous visit to the BMT floor she hadn’t gotten to see inside any of the rooms), so Jackqueline suggested they go up right then and try. After a while Anna came back, and it was time for us to head out.

Of course it took longer to get out of Houston than we’d anticipated. Although I had been pretty much completely packed by the time we left the room at 7:00 that morning, somehow I managed to get all discombobulated an,d by the time I was recombobulated (take that, spellchecker!) time had flown and it was time for Anna to contact her client again. Which pretty much brings me full circle, since I started this post while she was on that call. (That was Friday afternoon; it’s almost noon on Monday now.)

So I’ll jump ahead a few hours. We made it through Houston traffic and got onto I-10 heading west, then stopped to have a little dinner and relax a bit so we could decompress and debrief before the long drive home. It was a decent meal—just burgers and salad—at the Omni Hotel, in a very pretty space, filled with natural light from huge windows and the sound of water from several fountains. It helped. But then, sometime soon after she exited from I-10 onto Route 71, there was a strange, ugly, grinding/dragging noise from under the car. Anna pulled over. We both thought glumly about the $1600 we had just spent replacing the compressor for the car’s air conditioning the day before we left. Now what? We had visions of tow trucks and bad bad motels and of waking up even more exhausted than we’d been when we went to sleep. The Fayette County sherrif’s department was taking its time about getting help to us. And then a pickup truck pulled off the road and steopped a few yards ahead. A man walked over and asked if he could help; from the sound of his voice he might have been in his mid- or late 60s, and he had the faint Texas German accent you can still hear in some of the small towns that were originally settled by German immigrants in the mid- to late 19th century. He checked for flat tires and didn’t find any, though he thought one of the front tires might be a little low (the tow-truck operator at the next gas station said later that it was just fine). Then he asked Anna to pull up and over to the right a little. She did, and apparently that freed up whatever was dragging—some piece of plastic from the “air diverter” (who knew?!) next to the left front tire had pulled loose somehow. The man walked over to his truck, then came back, disappointed with himself: “I ain’t got no baling wire,” he said. But then he thought again: “But I got duct tape! That oughta hold you.” And in a few minutes he had taped the piece of plastic into place and sent us on our way. He wouldn’t take money, just said that if we were ever in the area again and needed any help, just call: his wife, who is also visually impaired and so doesn’t leave the house, will be there to answer the phone and he’ll be glad to help. Anna looked at the card he handed her, and it turns out they have an appliance repair business. The man’s name is Emil—a good German name. Thank you, Emil, for your act of kindness and trust.

And here’s another tale of wonderful generosity. On Wednesday night (it might have been Thursday) we went to a terrific restaurant called Gravitas for dinner—a big, busy place on Taft that does a very nice job with their food. (We’d been there twice before.) We knew this might well be our last special meal together in Houston before the craziness begins in earnest. We decided to split a starter of smoked trout and warm potato salad, then split a green salad as well; we’d each order an entrée . The trout was wonderful—the smoked fish and the potato sald were mixed together into a single salad with a really nice texture and a mild vinegary-and-smoky flabor that were just lovely together. And then the waiter appeared again, bearing not our salads but two huge platters of appetizers. There must be some mistake, we thought, but no: Emmett Fox had sent them! We were stunned. Emmett is the owner of two superb restaurants in Austin: Asti, which is our hands-down favorite place (it helps—or hurts, depending on your point of view<GRIN>-- that it’s just up  the street; and Fino, where  in fact we had had dinner on Tuesday night with Bill Nemir and Rino Pizzi. We had seen Emmett there, and told him we’d be leaving for Houston in the morning. The subject of Gravitas came up in that conversation, and Anna told him we were thinking about going there. So evidently he called the restaurant and told them to watch out for us—all they had to do was look for Dillon!—and that was that. It was a beautiful gesture, another in a long line of beautiful gestures Emmett has made since I got sick last summer; and it was all the more beautiful for being so utterly unexpected and so perfect for the occasion. So here’s to you, Emmett. Thanks so very much!

I am grateful to live in a world where such acts of kindness and generosity can happen. Not everyone is so fortunate. We have to change that somehow.

To Houston again: the Real Deal

We finally have something like a schedule! Here’s what we learned from Friday’s visit with Dr. Andersson and the transplant coordinator and the research nurse:

• I’ll be admitted to the hospital on Tuesday evening (August 15)


• Treatment will begin on Wednesday morning (August 16): there will be four days of chemotherapy (busolfan and fludarabine), ending on Saturday


• Sunday and Monday will be “days off” (why do I have trouble believing this?)


• Transplant Day will be on Tuesday (August 22d): Peter’s stems cells will be infused into me through the Central Venous Catheter that was inserted this past Thursday. The process will take several hours, and will be very much like the transfusions I’ve experienced in the past when I needed red blood cells or platelets. It’s just that this time I’ll be getting the seeds of a new immune system.

After this I’ll be in the hospital for another three to three and a half weeks. My white- and red-cell counts will come down (if they haven’t already done so) very low, and they’ll watch me closely for fevers, infections, and other things. They’ll release me from the hospital when they judge that I no longer require round the clock IVs; presumably there are other criteria, but this seems to be a very important one.
Following release from the hospital, I’ll be a daily outpatient for 100 days. During this time we’ll be living at the Rotary House, the hotel we’ve stayed in during our previous trips to MD Anderson. (Actually we’ll have our place at Rotary House starting tomorrow; it will be a base of operations for Anna and provide accommodations for visitors, including Mason—who arrives on Wednesday and will fly back on Sunday, and JayByrd, who’ll be helping us once again by bringing a load of our stuff in his car and then spend the night, and Lela, who’ll be helping out with Dillon while we’re in transition—more about Dillon below). Anna’s sister, Patti, arrives on Friday and will stay the weekend.
One more very important part of this: Dillon! Sadly, Dillon won’t be able to join me in the hospital. Dr. Andersson had hoped it would be possible, but apparently a check with all the other major transplant centers in the country turned up a unanimous “no” vote: although many of the centers had had experience with patients who used guide dogs, none had ever allowed the dog into the unit. That’s the bad news. The good news is that Dillon will be spending the month with Dan Schwab and Diann Grimm, the wonderful couple who raised him as a puppy, beginning when he was eight weeks old and continuing till he was 14 months old—the pint at which he returned to Guide Dogs for the Blind to receive his formal training in guidework. Dan and Diann are amazing people; clearly they did a fantastic job with Dillon, and they’ve provided similar foster care for many other guide dogs since. They love Dillon very much, and he loves them: whenever we’ve been able to get together over the years, Dillon has been just beside himself with delight—for example, when we visited them at their great new house in Richmond (near Berkeley) a few years ago, Dillon raced around their backyard at a dead run for about 30 minutes, then finally flung himself to the ground at Diann’s feet, completely and utterly worn out and happy. He’ll have a wonderful time, and we’ll be happy knowing that he’s happy out there—just as we were happy last year when Dillon stayed with Morgan and Didi Watkins while I was at St. David’s last year, enjoying their hospitality as well as the company of their three dogs (Fantom, Morgan’s first guide dog, now retired; Esther, the “general purpose” dog; and Will, Morgan’s current guide). So thanks in advance to Dan and Diann for taking such wonderful care of Dillon again, eight years or more later; and thanks for raising him so beautifully, too.
If you’re wondering how Dillon will get to California, the answer is “Mason.” When Mason leaves for his home in San Francisco on Sunday, he’ll take Dillon with him; Dan and Diann will meet the plane in San Francisco, and the transfer will be a done deal. (Mason will also be carrying a letter from Dr. Andersson explaining my situation and asking the airlines to facilitate all this.) Then, when Ledia comes to visit in September (after she’s completed her raft trip down the Mississippi and I’ve been released to float out of the hospital), she’ll bring Dillon back to us. Yay!

So… we’re off tomorrow morning, for the Real Deal this time. There’s wireless in the hospital room. I’ll write again as soon as I can after we find out the room number, telephone, etc. Until then, thanks for everything and love to each of you.

Quick round trip to Houston

We leave for Houston in an hour or so. This will be a quick roundtrip, prelude to the big adventure: a two-day trip to Houston.  I’ll get some blood drawn tonight at the hotel (no, that wasn’t a typo! They do bloodwork from 6-8 PM at the Rotary House). Then, tomorrow morning at 7:30, my Central Venous Catheter (CVC) will be surgically inserted (they’ll use an anesthetic called Versed, which I think I’ve had before—I’m saying it now because apparently I won’t remember it tomorrow afternoon…). Another blood-draw at 9:15, followed by something else (a visit with the Transplant Unit’s social worker, I think). Meanwhile, Anna will be sitting through two (identical) classes about the care and feeding of the CVC, and at 4:00 we’ll go to a different Infusion unit, this one in the main building (whereas the Infusion unit where they will insert the CVC is in the Ambulatory Care Building), so Anna can do a live demonstration that she has understood the care-and-feeding classes. (Note that she spent quite a lot of time last year taking care of my PortOCath and the PICC lines that succeeded it…) We’ll see Dr. Andersson, the transplant doctor, at 10:30 on Friday morning for what we presume will be the final go-ahead for the transplant—all the test results from last week will be in by then, and he’ll have had time to determine whether there’s anything that would prevent our going forward. Then, and only then, will we see the research nurse who will determine my actual date of admission to the hospital by some sort of electronic coin-flip. (The admission date will be either Sunday the 13th or Wednesday the 16th, we know that much; but they won’t say which until after Dr. Andersson has approved the procedure.) And then we’ll come home, whether for 36 hours  or a few days.

Meanwhile, Ledia and her partner, Paul, have embarked on a much more pleasurable and fun journey: they’re floating down the Mississippi River from Minneapolis on big homemade rafts, which they’ve built along with a band of 30 or so other artists from New York, San Francisco, and points in between. They plan to get as far as St. Louis, and maybe go on to New Orleans. There’s a great article about the Miss Rockaway Armada in today’s New York Times! There’s even some video. (The project site is at http://www.missrockaway.org.)

The celebration

I’m still basking in the glow from Sunday’s celebration. It was just wonderful. Thanks to all who came, and especially to Anna and everyone else who worked so hard to get it organized and make it such a beautiful occasion.

There must have been close to 150 people there, and we’ve received more than 150 messages and other objects for the 130 Letters project! I’m looking forward to the opening of each envelope and to hearing what’s inside. We’ll keep you posted! I’m not even going to try to name names here—there were so many people, and I didn’t even get a chance to say hi to everyone. But I know you were there, and it makes me very happy.

LZ Love, the gospel singer, and two members of her band were playing  as people arrived. She has a rich, strong, passionate voice, and the music set a great tone, intense and  celebratory,  as people gathered, got themselves wine or other drinks, put on their nametags, talked to old friends or made new ones. Meanwhile, I had been steered to a chaise-longue that Laura Rose and Bruce brought from their backyard and draped with a deep red and purple India-print bedspread. Some people said it looked like a throne,but if “kingly” is the right word for what I was feeling then it was only because so many people came up to say hello and I got so many great hugs—it had never occurred to me that it would be like this! I danced a little with Anna (I hadn’t gotten to dance with her at BodyChoir in the morning because she was doing the music—and because whenever I headed in her direction I found myself dancing with several other people and ended up in some completely different part of the dance-space!), and then she led me back to my lounge chair so the ceremony could begin.

Neil Blumoff, the cantor of Congregation Agudas Achim, led this part. This part. It was beautiful. He had selected Moses’ prayer for the healing of his sister, Miriam: "El Na,Rafanah La, God please, heal her now” (Numbers 12:13), with the final pronoun changed to the masculine lo. He began by getting the whole group chanting—first a single note, then a major 5th, then finally a 7th. Then he taught the individual words, repeating them  several times till everyone had the prayer, and then he had the whole group sing the prayer, slowly and powerfully, his beautiful clear voice rising above the rest. It was incredibly moving and powerful—so simple, so beautiful.  I Wanted to know more about this prayer, so (of course) googled it; almost the first thing I found was a Web page where Rabbi Edyth Held Mencher talks about this same prayer in connection with a woman who had a stem cell transplant.  I like the connection—not only with others who have cancer but also with other Jews going all the way back to biblical times; although I was raised as a Jew and have occasionally felt that connection through ritual, it hasn’t been a strong part of my life and I welcome it now as I never have before. Something to explore, perhaps, with Hope Lipnick from the chaplain’s office at M.D. Anderson, whom I met last week.

Cantor Blumoff then again asked the group to chant wordlessly while  he sang  the Misheberach prayer, a centuries-old prayer for healing, and again his voice soared. During this whole time he had been gripping my right hand while Anna held my left, and thole group sang with joined hands. So we were all together, and there was an incredible energy in the room.

LZ and her band started up again, and there was more dancing and talking, eating and drinking, and general good feeling. And then LZ was beside me in my chair and asking for the group to gather round. She asked me for permission to take my picture, then said “I’m gonna flash you!” I said this was the part where I wanted a live rendition of I once was blind but now I see, and I guess she took my picture. Then she grabbed my hand and sang her song, “Trials,” which I love and which I had asked for. She did it a capella in that powerful, rich voice with a little extra huskiness in it because, as she said, she’d been singing for four days straight and she was a little hoarse. That just made it all the more beautiful. Then she rejoined the band for a couple more songs, ending with another really powerful one, a rock-the-house song called Movin’ on to Higher Ground.

Then Bhagirit was at the microphone. I knew he’d arrived because he had been sitting behind my left shoulder talking a little earlier, so (after a few seconds when I didn’t recognize his voice) I knew he’d made it in from the airport. He explained a little about some of the work he and I had done together since May. Then he invited everyone to invoke whatever healing force they recognize and suggested that we visualize it as a great golden light filling the air and our bodies, from the crown of the head down to the toes. When he finished, the room was absolutely silent—even the air conditioning wasn’t humming—for what seemed but probably wasn’t a long time. It was fantastic, an amazing thing. Just a few minutes earlier it would have seemed impossible for a room so large and so full of lively, strong, energetic people to fall so quickly and profoundly silent and then hold the silence. It was, truly, awesome.

Eventually the voices came back. People said their good-byes and drifted off into what was still bright, intense sunlight; and we left too.

I haven’t done anything like justice to what took place in that space. I can’t even begin to take it in. I’m so moved, so grateful, so much in awe  of the love I felt and heard in that room, the love that I’ve heard and felt since this whole thing started last June—this ordeal, this journey, this life-shattering, strangely beautiful disease that changes everything and nothing.I’m not alone. I am well and truly loved by a large and generous community here in Austin and far beyond. Thank you, thank you, thank you.

To Houston and back this week!

It’s starting to get real again. I woke up this morning at 7:00 in the Rotary House, heard Jay Byrd moving quietly around the room, and suddenly knew that in a couple of hours I’d be in a waiting room in the clinic, waiting for the blood-draw ritual and going on from there to several more tests, ending with a bone marrow biopsy scheduled for 11:00.  I felt my anxiety level rising, and told myself to breathe: In, out, in, out, remembering to inhale through my nose to fill my diaphragm, exhaling through the mouth, In, out, in, out… I said the words to myself—In, out, in, out—but I couldn’t sustain it and got up and went through the morning routine: stretch, shower, dress, feed Dillon, take Dillon out, groom him, come back upstairs after a stop at the big garbage can to the left of the hotel door… JayByrd had granola and bananas and morning supplements ready, but there was something odd about the soy milk we’d bought at Whole Foods yesterday: it was chunky! Is it supposed to be like that? Somehow I doubt it… No matter, though, there was enough liquid to moisten the granola and that was the main ting.

It should have been more real yesterday. Peter was in the Aforesis unit on the 8th floor with an IV in each arm, the aforesis machine pulling blood from one arm, removing the stem cells from it, and putting everything else back through the IV in the other arm. It wasn’t easy. The machine expected the blood to be flowing at a certain rate, and whenever the rate dropped below that threshold that machine binged and the hovering nurse said either Open, close, open, close or Keep pumping. I couldn’t see it, of course, but apparently Peter had to hold one arm up in a very awkward position while opening and closing his hand around what was at first a squeezable rubber heart, later replaced by what he thought might be a squeezable fish; he had to keep this up for something like four and a half hours! I wanted to be a lot closer to him than I was—physically, I mean. I was sitting in a strange loungey-type chair near but not at the foot of his bed, with a big, immovable cabinet to my right that held all sorts of supplies for the nurse, who used it quite often; she clearly needed an open path from his IVs all the way around the bed
, and she needed to be able to get to the cabinet as well. So there I sat. The distance made conversation more difficult since we both had to raise our voices to be heard—especially since there were nine other beds in the room, with no doubt similar mini-dramas going on at many of them. There were machines beeping and binging and chiming and ringing, and over to my left something was whirring, or maybe it was a printer though I couldn’t figure out what it might be printing so quickly and so often, and there were nurses and patients coming and going the whole time. But it was a wonderful, amazing thing: there was Peter, my own brother, come all the way from New York to participate in this strange, enormously complex process so that cells from his body can be infused into my body to give me renewed health and new life, and at the same time there we both were, trying to hold ordinary conversation not only between ourselves but also, from time to time, on the phone! There were times when Peter sounded exhausted, and very frustrated, worried that his blood just wouldn’t flow fast enough, and I just wanted to reassure him and say It’ll be OK, but I don’t think I did say it, at least not out loud, because like him I had become convinced that he’d have to go through the whole process again today: he would check in at 7:30, they would check his blood counts and check yesterday’s results, and tell him that there weren’t enough stem cells yet. And I wouldn’t be there, since I would be off in other clinics  being tested to determine my physical capacity to tolerate the transplant process.

But it didn’t turn out that way! In fact they harvested something like 7.2 million stem cells from Peter yesterday, well beyond what was actually needed. This is wonderful—it gave him a free day today, and he’ll have another one tomorrow till it’s time for him to go out to Intercontinental Airport and fly back to New York. (He’s been working the whole time he’s been here, I think: yesterday afternoon JayByrd and I drove him to a meeting with some people involved in commercial real estate, and this afternoon he had at least two more meetings with other people; I’m sure he worked last week and over the weekend, too. Tomorrow he’s planning to go to the de Menil collection and the Rothko Chapel, then head for the airport. He and I will have dinner tonight with his friend Nancy—a friend of Nevah’s from college days at Tulane; we ate with her on Monday night as well, at Churasco’s, which was great fun. I’ll try to get together with Peter tomorrow morning—I think my first appointment is at 10:00, so there should be time.

Remarkably, my tests this morning went pretty much on schedule or even ahead of schedule. I went to the big diagnostic lab for bloodwork at 9:00. It seemed a huge contrast from our first visit there back in March, when the waiting room was just seething with people and my overwhelming impression was one of chaos and disorganization and fear (my fear, of course). There were a lot of people in the waiting room again today, though not quite as many as on that first time, but I experienced it differently: when the receptionist called out a long list of names, the names of people whose time it was to come and get tested, I heard it not as an impersonal, demeaning cattle-call but instead as evidence of how many people they can handle at one time—and of how many different kinds of tests they do in there: there are many, many rooms, each devoted to a different kind of diagnostic work. The people in those rooms are quick, efficient, and genuinely nice; in my case, they all made a point of commenting about Dillon and how beautiful he is(JayByrd told me later that one woman had warned him jokingly that one of her colleagues loved Dillon so much she might try to take him, so we’d better watch out!). That was on the second floor, near Elevator A. From  there we went up to Diagnostic Imaging, on the third floor near Elevator C, where I had a chest x-ray, and then we went back down to the second floor, again near Elevator C I think, for an echocardiogram and an EKG, and then we went up to 7 for the bone marrow aspiration and biopsy. We were a little early and they weren’t quite ready yet, so JayByrd and I went back up  to the 8th floor because we thought I was supposed to sign a form consenting to something. Turned out that wasn’t necessary, but the trip upstairs wasn’t wasted: a volunteer from the Leukemia-Lymphoma Society had been looking for me, and she got us started with a form we can use to get reimbursed for up to $500 in related expenses. And then we met a very interesting woman from the chaplain’s office, someone who works for Jewish Family Services here in Houston though her office is here at MD Anderson. She’s interested in all sorts of healing work, including a number of things that are familiar from BodyChoir—raki and so forth. I’m looking forward to talking with her some more.

• It’s Thursday morning now, and Peter’s here; we’re getting ready to go downstairs to breakfast, so I’ll sign off. More later, after CT scans and MRIs and lumbar punctures today. If the lumbar puncture doesn’t make it real, nothing will<grin>..

Friday morning
Back in Austin!  And it feels great—the more precious because we’ll be going back to Houston so soon for the long haul. JayByrd and I got to the house about 9:30 after a very full day. My first appointment was at 10:10 at the Outpatient Radiology building, where I had to sign in for a CT scan of my sinuses (they want to make sure there are no infections lurking in there, waiting to spring into full-blown misery as soon as my white count drops too low to fight them off). The building smelled horrible—not the usual hospital smells, nothing identifiable, just horrible. Eventually we found out there’d been a little accident involving a whole grilled chicken and a microwave oven… So they had as many doors and things open as possible (of course there’s no way to open any windows), and everyone was just putting up with it. The CT scan took a couple of minutes. From there we took the shuttle over to the Ambulatory Care Clinic (yes, there’s something odd about riding the bus to an ambulatory care facility, but what the hell…). We watched a 10-minute video about the Central Venous Catheter that will be inserted into my body next week, and went through the informed-consent form with the nurse before I signed it; I also asked for some clarification about timing, since Anna will be required to attend two classes (two identical classes!) and demonstrate that she can change the dressing and flush the ports with Heperin (to prevent clotting), and none of that showed up anywhere on the schedule. I vented a little about that, and then we went forward. By then we were running a few minutes late for my next appointment, four floors down in the same building. This was for an MRI of the brain, to check on the effects of the radiation treatments I received in May and June.

The tech who led me to a little room, helped me get changed, and started an IV that would be used later in the process to inject some contrast dye turned out to be the same man, Mineheart, who had performed those same tasks on that terrifying Tuesday evening back in May the week after the relapse had been diagnosed, and Tom, the man who operated the MRI equipment, had played the same role in May as well. Somehow both of them were working extra hours this week, so they were there in the afternoon as well. I got a little teary lying there before the table rolled me into the innards of the MRI—the fact that it was the same two men got to me, and I realized that we had come full circle in a way. I’ve been so focused on the transplant that I haven’t allowed myself to think too much about the whole CNS/brain issue, which is in so many ways a separate problem; and then there I was, about to roll inside the same machine that had produced such terrible, terrifying results a little less than three months ago. (The good news is that I was there to have that MRI, and that I was feeling just fine: without the treatments that began in May I’d probably be dead or near-dead now, yet here I am, typing away, sitting in my study, delighted to be here, and annoyed at the sheer massive inconvenience of it all!)

After the MRI—which took about 45 minutes—we had to go back to the main clinic building for a complete Pulmonary Function Test, which involved a lot of breathing into tubes, holding of breath, sharp intakes of breath and long, long exhalations; holding of breath; exhaling or panting with the tube suddenly closing off; and so on. That ended a little after 3:00, and Jay Byrd guided my around the corner to the BMT clinic (we had to walk from Elevator C to Elevator A), where I was scheduled for a lumbar puncture. That evoked similar feelings to those I experienced just before the MRI, since the first lumbar puncture  in May had also produced terrifying results. But then Sue, the wonderful artist of the lumbar puncture whom I’ve talked about before, came in and did her magic. I had to lie down for an hour when she was done—standard procedure to give the spinal fluid time to re-establish equilibrium. While I was doing that, Jay Byrd very thoughtfully went back to the hotel and packed up the car. He came back and got me, and we drove over to Miss Saigon in Rice Village (no wisecracks) to get some food (there hadn’t been time for lunch in all the running around) and wait for the worst of the traffic to die down. Then we got on the road, and were back here by 9:30 or so.

Anna’s going to give me a ride over to the gym in a minute so I can get a workout in, and then this afternoon I’ll see Elke at 1:30 and visit with Peg Syverson later. Another full day!

It’s wonderful to be home. I’m gonna post this before it gets any longer.

Love to all!

Celebrate with us!

(Some people may not have seen this; for others, it’s a reminder-invitation!)


Please come and celebrate with us!
When: Sunday, August 6, 4:00-6:30 PM
Where: Unitarian-Universalist Church, 5700 Grover, Austin
What: John and Anna going to Houston for four months so John can get a new bone marrow grown from his brother Peter’s stem cells!!

Please, please come! Let us give you a great big hug and lots of love, and help us celebrate this wonderful, scary opportunity for renewal and life! There will be music, prayer, food, and possibly even some wine—and most of all, you, the friends we love so much, who have given us so much love and support this past year.

And don’t forget! We’re still collecting letters and other messages for the “130 Letters” project! We want to gather 130 (or more!) letters, etc., from friends far and wide—at least one for each of the 130 days we’ll be in Houston. We’ll put your messages in 130 randomly numbered, brightly colored envelopes, and we’ll open one each day we’re in Houston. Anna will read your messages or poems or stories, recite your blessings, put your music on—whatever you’ve sent—and we’ll think of you and bring you into the room with us to make the day special and get us that much closer to coming home. Bring it in person if you can; send it if you can’t be here physically.

Diane’s gathering these for us. You can email her at:
dianec@interactiondesign.com
or send them through the mails to:
Diane Colvard
405 E. 35th St.
Austin, TX 78705

Thanks so much! See you Sunday afternoon!