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.
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.
posted by John Slatin at 8:50 PM
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