Day 49: On waiting and chimeras
Just got back from the clinic a little while ago. The IV’s done for the day, and my blood counts are good: overall white count 5.6, neutrophils 2.63, hemoglobin 12.8, platelets 70 (up from 50 on Friday, which in turn had been up from 39 two days earlier), electrolytes all OK except for slightly low magnesium (I’ll resume taking the pills again at dinner tonight, hoping that this time my stomach will tolerate it better), liver and kidney stuff all OK. I’ve got a bit of a runny nose and a slight cough, but I spent several hours sitting outside on Saturday, and I’m told it’s the height of this season’s allergy season so it’s not really a surprise. The likelihood that it’s just allergies is heightened by the fact that there’s no sign of fever (I haven’t even made it up to 98.0 for days!). No rashes (which would be a possible sign of graft vs. host disease). Even my taste buds seem to be staging a slight comeback! The official word from Elaine, the APN in the ATC (sorry, couldn’t resist the alphabet soup—she’s the Advanced Practice Nurse in the clinic, who manages my case when the doctor’s not in), is that I’m “doing great.”
On Saturday afternoon we took my dad, who flew in from New York City on Wednesday afternoon and returned to Buffalo yesterday, to the Rothko Chapel. It’s close to the Menil Collection and not far from here—a simple building, both interior and exterior, with nothing on the walls except 14 abstract paintings by Rothko, who also designed the chapel itself, which opened in 1971. There had been a private service of some kind—perhaps a memorial service, since when it ended my dad saw someone carrying out a woman’s portrait—so we weren’t able to go in right away. Near the chapel is a bamboo grove surrounding a rectangular pool. It seemed very still to me—the only sound was a gentle breeze blowing through the bamboo, which rustled very quietly—but Anna said there were eddies in the pool, caused by underwater jets that sent them upward without breaking the surface. We sat for 45 minutes or so, talking quietly, and then went into the chapel itself.
I think we were alone in there for a little while. It felt very, very still, very peaceful. Anna led me to a bench in the center of the room and I sat down, and all of a sudden I was crying. Anna put her arms around me and cried with me, and then the tears subsided and we just sat there holding each other, breathing in the stillness. More people had come in—not many—and their footfalls echoed in a way that reminded me of footsteps on the stone floors in Notre Dame and other European churches I’ve been to, where it’s also quiet and cool and dark, though the coolness in those places comes down the centuries rather than being produced by air conditioning (I could hear the system humming quietly to itself in the background), and the glorious stained glass windows in the Gothic cathedrals are virtually the antithesis of the Rothko paintings. The paintings are so dark that they appear black—that’s how they seemed to both Anna and me when we went there several years ago—but to my dad they were alive with color and subtle variations, purples and blacks and even different blacks, and I loved hearing his excited description of how the colors changed from one panel to the next and how the subtle changes in the natural light coming from the ceiling picked up the brushstrokes and changed the paintings yet again. We stayed for 30 minutes, maybe, then drove back to Rotary House. I went up to the room to rest, and Myles went to his room to do the same. I felt both more peaceful and more highly emotional, more weepy, than I had in a long time.
(Those first three paragraphs were written yesterday, Monday. It’s Tuesday morning now, Day 49—I’m 7 weeks old today!—and back in the ATC; the IV’s running and should be done about 11:30. Today’s blood counts are good, too: overall white count 5.1, neutrophils 2.14, hemoglobin 12.4, platelets holding steady at 70, electrolytes all in normal range—including the magnesium, which so far hasn’t bothered my stomach. Today’s IV includes pentamidine, something I get every three weeks to prevent pneumonia; I’m all for that, but its side effects can include nasal congestion, which I already have in spades, and nausea, which I’m just now experiencing—aren’t you glad you asked? So I’ve taken a Zofran to ward that off, and on we go.)
It came to me, sitting there in the peacefulness of the Rothko Chapel on Saturday afternoon, that I’m stuck on the challenge of not-knowing, of being reminded every day how uncertain it all is. The blood counts both address and exacerbate the challenge for me—they seem so precise, registering such minute detail, but they’re also so changeable, up one day, down the next and the next, up again, down again; it’s probably like that all the time for all of us, now that I think of it, but there’s no reason for most of us to check every day so we don’t. The medical team operates in a state of not-knowing, too; it seems that in many cases they don’t have direct access to direct evidence of things it’s vital for them to know. Is a touch of diarrhea just that, or is it a sign of graft vs. host disease? Or a bacterial infection, or something viral, or …? And so they study the entrails, look at the numbers, correlate the visible evidence with the submicroscopic, wait and see what if anything develops.
The not-knowing, or rather my discomfort with it, has made it difficult to write—that, along with the fact that my fingernails had grown to near-mythical length, a problem that Anna finally took into her own hands the other evening, trimming and filing my nails so at least they’re not claw-like anymore. But it goes deeper than that, though “deeper” may not be the right metaphor here. It feels like there’s nothing to write about, or at least it has been feeling that way. That’s not right, either: it feels like I don’t know how to write about what’s happening because so much of what’s happening is registered, however faintly, in those numbers and in our waiting, waiting and not-knowing.
The other night Anna described an exercise she’d gotten from one of her mailing lists; it sounded interesting, so we both tried it. As I remember it, the exercise went like this: Project yourself 30 years into the future. After contemplating that projection for a while, write a letter to your present self from the future self. What question(s) does your future self have forr present one? What will she or he say to you?
For me, the questions were about writing this blog—why was I holding myself back, why had I become reluctant to narrate the day to day course of events and share my thoughts and feelings about this experience, why did I believe that there was nothing “happening” that was worth recording and sharing with the people I love and who love me? I still don’t know the answer to all those whys, but there’s something there worth a closer look. It feels like there’s nothing much going on—we’ve settled into a routine, sort of, and I find it hard to write about the mere routine: it feels like nothing, and nothing is extraordinarily hard to write about. As Wallace Stevens said in “The Snow Man,” “One must have a mind of winter/And have been cold a long time …. To see nothing that is not there/ And the nothing that is.” (Which reminds me: one of the many things I’m grateful to the 130 Letters project for—grateful to you for—is the gift of poetry: so many people have sent so many wonderful poems that it feels like I’ve gotten poetry back, though I didn’t realize I’d lost it somewhere along the way, so that now I’ve got the double gift of beginning to recognize the loss and repairing it at the same time.
This just in! Anna and I just got back from dinner at Mykonos, a Greek place on Richmond that does a wonderful broiled snapper with lemon, olive oil, garlic, and “Greek herbs,” and I showed Anna the analysis of the bone marrow biopsy from last month. And the results are good: “The post transplant microsatellite polymorphism pattern is identical to the donor pattern which is compatible with successful engraftment. No chimerism is observed.” As I understand it, this means that the transplant has taken hold completely: The DNA of my bone marrow and the blood cells it produces is identical to Peter’s DNA. This in turn means that there is no “chimerism,” a condition that Wikipedia defines as occurring when “an animal has two or more populations of genetically distinct cells …”; chimerism “is either acquired through the infusion of allogenic hematopoeic cells during transplantation or transfusion or it is inherited.” What I had was an allogenic transplant—Peter’s blood-making (hematopoeic) stems cells were transplanted (via transfusion!) into my circulating blood, then took hold and “engrafted” onto my own bone marrow. They have now taken over; engraftment is complete. But this applies only to my blood, not to the other organs: a sample of saliva or organ tissue would show my old DNA.
This is where things are happening: in the blood and bone. And it’s already happened: that biopsy was done on September 21, Day 30—19 days ago. I had to wait nearly three weeks to hear the results, and even then I had to ask—and that was after Jay and had waited for three hours in my room at the clinic for Dr. Schpall (sp?), who is filling in for Dr. Andersson while he’s in Sweden visiting his family. Anna had to do a lot of waiting today, too, in addition to all the time she’s spent waiting for me to heal—she had gone to Indiana on Sunday for a business meeting with a major client, but this morning she got bumped from the first leg of her flight home, which meant that she reached Detroit 60 seconds too late to catch her connection to Houston, which meant she was stuck for a couple more hours, then had to go to another terminal to reclaim her baggage and get the car from the garage there before finally driving back here. Whew. What else am I waiting for? I don’t know. But I’m waiting. Thanks for waiting with me.
On Saturday afternoon we took my dad, who flew in from New York City on Wednesday afternoon and returned to Buffalo yesterday, to the Rothko Chapel. It’s close to the Menil Collection and not far from here—a simple building, both interior and exterior, with nothing on the walls except 14 abstract paintings by Rothko, who also designed the chapel itself, which opened in 1971. There had been a private service of some kind—perhaps a memorial service, since when it ended my dad saw someone carrying out a woman’s portrait—so we weren’t able to go in right away. Near the chapel is a bamboo grove surrounding a rectangular pool. It seemed very still to me—the only sound was a gentle breeze blowing through the bamboo, which rustled very quietly—but Anna said there were eddies in the pool, caused by underwater jets that sent them upward without breaking the surface. We sat for 45 minutes or so, talking quietly, and then went into the chapel itself.
I think we were alone in there for a little while. It felt very, very still, very peaceful. Anna led me to a bench in the center of the room and I sat down, and all of a sudden I was crying. Anna put her arms around me and cried with me, and then the tears subsided and we just sat there holding each other, breathing in the stillness. More people had come in—not many—and their footfalls echoed in a way that reminded me of footsteps on the stone floors in Notre Dame and other European churches I’ve been to, where it’s also quiet and cool and dark, though the coolness in those places comes down the centuries rather than being produced by air conditioning (I could hear the system humming quietly to itself in the background), and the glorious stained glass windows in the Gothic cathedrals are virtually the antithesis of the Rothko paintings. The paintings are so dark that they appear black—that’s how they seemed to both Anna and me when we went there several years ago—but to my dad they were alive with color and subtle variations, purples and blacks and even different blacks, and I loved hearing his excited description of how the colors changed from one panel to the next and how the subtle changes in the natural light coming from the ceiling picked up the brushstrokes and changed the paintings yet again. We stayed for 30 minutes, maybe, then drove back to Rotary House. I went up to the room to rest, and Myles went to his room to do the same. I felt both more peaceful and more highly emotional, more weepy, than I had in a long time.
(Those first three paragraphs were written yesterday, Monday. It’s Tuesday morning now, Day 49—I’m 7 weeks old today!—and back in the ATC; the IV’s running and should be done about 11:30. Today’s blood counts are good, too: overall white count 5.1, neutrophils 2.14, hemoglobin 12.4, platelets holding steady at 70, electrolytes all in normal range—including the magnesium, which so far hasn’t bothered my stomach. Today’s IV includes pentamidine, something I get every three weeks to prevent pneumonia; I’m all for that, but its side effects can include nasal congestion, which I already have in spades, and nausea, which I’m just now experiencing—aren’t you glad you asked? So I’ve taken a Zofran to ward that off, and on we go.)
It came to me, sitting there in the peacefulness of the Rothko Chapel on Saturday afternoon, that I’m stuck on the challenge of not-knowing, of being reminded every day how uncertain it all is. The blood counts both address and exacerbate the challenge for me—they seem so precise, registering such minute detail, but they’re also so changeable, up one day, down the next and the next, up again, down again; it’s probably like that all the time for all of us, now that I think of it, but there’s no reason for most of us to check every day so we don’t. The medical team operates in a state of not-knowing, too; it seems that in many cases they don’t have direct access to direct evidence of things it’s vital for them to know. Is a touch of diarrhea just that, or is it a sign of graft vs. host disease? Or a bacterial infection, or something viral, or …? And so they study the entrails, look at the numbers, correlate the visible evidence with the submicroscopic, wait and see what if anything develops.
The not-knowing, or rather my discomfort with it, has made it difficult to write—that, along with the fact that my fingernails had grown to near-mythical length, a problem that Anna finally took into her own hands the other evening, trimming and filing my nails so at least they’re not claw-like anymore. But it goes deeper than that, though “deeper” may not be the right metaphor here. It feels like there’s nothing to write about, or at least it has been feeling that way. That’s not right, either: it feels like I don’t know how to write about what’s happening because so much of what’s happening is registered, however faintly, in those numbers and in our waiting, waiting and not-knowing.
The other night Anna described an exercise she’d gotten from one of her mailing lists; it sounded interesting, so we both tried it. As I remember it, the exercise went like this: Project yourself 30 years into the future. After contemplating that projection for a while, write a letter to your present self from the future self. What question(s) does your future self have forr present one? What will she or he say to you?
For me, the questions were about writing this blog—why was I holding myself back, why had I become reluctant to narrate the day to day course of events and share my thoughts and feelings about this experience, why did I believe that there was nothing “happening” that was worth recording and sharing with the people I love and who love me? I still don’t know the answer to all those whys, but there’s something there worth a closer look. It feels like there’s nothing much going on—we’ve settled into a routine, sort of, and I find it hard to write about the mere routine: it feels like nothing, and nothing is extraordinarily hard to write about. As Wallace Stevens said in “The Snow Man,” “One must have a mind of winter/And have been cold a long time …. To see nothing that is not there/ And the nothing that is.” (Which reminds me: one of the many things I’m grateful to the 130 Letters project for—grateful to you for—is the gift of poetry: so many people have sent so many wonderful poems that it feels like I’ve gotten poetry back, though I didn’t realize I’d lost it somewhere along the way, so that now I’ve got the double gift of beginning to recognize the loss and repairing it at the same time.
This just in! Anna and I just got back from dinner at Mykonos, a Greek place on Richmond that does a wonderful broiled snapper with lemon, olive oil, garlic, and “Greek herbs,” and I showed Anna the analysis of the bone marrow biopsy from last month. And the results are good: “The post transplant microsatellite polymorphism pattern is identical to the donor pattern which is compatible with successful engraftment. No chimerism is observed.” As I understand it, this means that the transplant has taken hold completely: The DNA of my bone marrow and the blood cells it produces is identical to Peter’s DNA. This in turn means that there is no “chimerism,” a condition that Wikipedia defines as occurring when “an animal has two or more populations of genetically distinct cells …”; chimerism “is either acquired through the infusion of allogenic hematopoeic cells during transplantation or transfusion or it is inherited.” What I had was an allogenic transplant—Peter’s blood-making (hematopoeic) stems cells were transplanted (via transfusion!) into my circulating blood, then took hold and “engrafted” onto my own bone marrow. They have now taken over; engraftment is complete. But this applies only to my blood, not to the other organs: a sample of saliva or organ tissue would show my old DNA.
This is where things are happening: in the blood and bone. And it’s already happened: that biopsy was done on September 21, Day 30—19 days ago. I had to wait nearly three weeks to hear the results, and even then I had to ask—and that was after Jay and had waited for three hours in my room at the clinic for Dr. Schpall (sp?), who is filling in for Dr. Andersson while he’s in Sweden visiting his family. Anna had to do a lot of waiting today, too, in addition to all the time she’s spent waiting for me to heal—she had gone to Indiana on Sunday for a business meeting with a major client, but this morning she got bumped from the first leg of her flight home, which meant that she reached Detroit 60 seconds too late to catch her connection to Houston, which meant she was stuck for a couple more hours, then had to go to another terminal to reclaim her baggage and get the car from the garage there before finally driving back here. Whew. What else am I waiting for? I don’t know. But I’m waiting. Thanks for waiting with me.
posted by John Slatin at 9:04 PM
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