A week at home!
Sorry it’s been so long since my last post!
I’ve been at home for a week now, and it’s just wonderful. I’m still weak and I get tired pretty easily, but I’ve been gaining strength every day and feeling better. I’m scheduled to see Dr. Tucker again the day after tomorrow, but haven’t been to the clinic since last Thursday. My neutrophyll count was well into the normal range then (it was 4.7), and while both my hemoglobin and platelet counts were still low, the platelets had started to come up, indicating that my body might have made some platelets on its own, and that indicated that the hemoglobin count would probably start rising as well (with a little help from the Aranesp shot I received on Wednesday afternoon—the red-cell counterpart to the Neupogen shots I’d had the last 6 days in the hospital). I’ve felt well enough to go out with Anna for a couple of dinners, and yesterday morning we went to BodyChoir. I didn’t dance—just lay on a mat at the front of the room, near where Anna was playing the music she’d selected for the dance. (The music was gorgeous; she played a Portuguese fado near the end that just broke me open, not just with sadness and grief at my own situation but with joy for all the beauty and love that filled the room.) So I lay there with Dillon, and throughout the morning people came over to pet both of us (<grin>); by the end of the dance I could feel and hear a lot of people around me, holding me, holding each other, and then the breathing turned into a wordless chanting, beautiful and deep and soothing.
Friday afternoon Anna took me over to Elke’s, to talk about nutrition and other things that will help me rebuild my strength and reduce stress levels as I prepare myself for the bone marrow transplant (more about that shortly). She began by doing some “muscle testing”—she had me press the fingers of my left hand on acupuncture points at different places in my upper body, while at the same time I joined the tips of my right thumb and middle finger and tried to resist as she tried to pull them apart. In each case she was able to break my grip very easily, meaning that each of the acupuncture points she was testing was “off.” Then she put four or five small vials into my pocket, and we repeated the procedure; this time, to my amazement, I was able to resist when she tried to pull my thumb and middle finger apart. I have no idea how that worked. Elke explained that it had something to do with a “resonance” between the frequencies of the materials in the vials and the frequency at which my body resonates. I don’t understand this, but there’s no gainsaying the difference between the first round of muscle testing and the second. The vials contained various supplements—minerals, etc.—and we’ll talk about them with Glenn Leupnitz, an extraordinarily knowledgeable nutritionist who works out of an oncology clinic, tomorrow. Meanwhile, we’ll go to Elke again late this afternoon. The most amazing part of Friday’s session was what followed the muscle testing. Elke described it as acupuncture without needles, but there’s more to it than that. After using some kind of computer-linked sensor to get a reading of various acupuncture points, Elke put some headphones over my ears and some glasses over my eyes, then inverted the chair so that I was almost upside down. She flipped a switch somewhere (presumably on the computer), and three things happened at once: in my ears I heard the sound of waves breaking on the beach, as it were “behind” pulsing electronic sounds—not music exactly, just a range of frequencies including some very deep bass tones; the chair vibrated in tandem with the bass notes; and I saw flickering red light behind my eyelids (Elke had explained that this would happen and that my blindness wouldn’t affect it since everyone has their eyes closed at this point). The sound of the waves was wonderfully right—Elke had suggested that I visualize someplace where I had been happy, and my mind turned immediately to Cape Cod, so the wave-sounds were just perfect. My mind strayed to other things, but apparently I didn’t get far from the Cape. At one point I found myself visualizing Fisher Beach Road in Truro as one would walk toward the beach—a beautiful vista of tall grasses, blueberry bushes, shingled houses, and Pamet Harbor off to the right. But then suddenly I must have been walking the other way, because I was turning right from the roadside into the sand driveway of the cottage my family rented for several years (the Anderson cottage, I think it was called). And there was Smokey, the Lab-Something (beagle, maybe?) mix whom we’d rescued from the pound when I was in 8th grade, wagging his whole body, grinning and sneezing, happy that I was home. He clicked into view like a slide in an old-fashioned slide projector. “There you are!” I said to him, delighted to see him. And suddenly I was crying, because I realized I hadn’t said good-bye to him properly—he died of a heart attack one night during my first year in graduate school, and I was so preoccupied that I didn’t really allow myself to feel anything when my father called to tell me the news. And then I was happy again, thinking that Smokey and Dillon would have liked each other and had fun together. And then my mother appeared; I could hear her bracelets jingling and saw the one-piece bathing suit she was wearing (I think she may have made it herself). She was happy—she loved it on the Cape—but didn’t say anything. I was glad to see her—she looked so young! (This would have been sometime in the mid-60s, I think, and she’d have been in her forties; she was young!) Then I was aware of myself in that chair, almost upside down and crying, wondering happily at those amazing images, astonished that they had appeared. The session ended, Elke brought me upright, and I was back in the room with her and Anna and Dillon. That night I slept better than I had in weeks, maybe months.
The previous afternoon, on Thursday, Anna and I had an hour-long conference call with Dr. Andersson, the transplant doctor from M.D. Anderson. The call was arranged by Donna Martin, the Patient Advocate—we had been feeling increasingly caught in the middle between Dr. Andersson and Dr. Giles, the leukemia specialist who’s been treating me since May, because they seemed to have quite different ideas about when it would be appropriate to begin the transplant process—an issue Anna and I don’t feel competent to resolve--and as far as we could tell the two hadn’t spoken to each other. At the end of my last visit with Dr. Andersson sometime in May, he had suggested that we meet again in late September, because he wanted to see evidence of remission in the Central Nervous System (CNS) for 4-6 months before beginning the process. But when I mentioned this to Dr. Giles, he said, “That’s a tall order!” I asked him then to talk with Dr. Andersson about it, but as far as I know that hadn’t happened. After the fact, I realized that I took the “tall order” comment to mean that Giles thought it unlikely that I could stay in remission that long. That makes me anxious all by itself, and it made me increasingly anxious about waiting till late September even to talk with Andersson again.
It was a good call: Dr. Andersson both explained the reason for his wanting to see a 4-6 month remission and agreed that it might be a good idea to begin the process in late August or early September after all, which is the timeline Dr. Giles had mentioned during our last meeting with him as well. He explained that the 4-6 month figure is a kind of informal policy at MD Andersson, which has come out of past experience: patients who underwent transplant while not in full remission had done poorly. My CNS has apparently been leukemia-fre since early June; a late August or early September start might be OK if all the preliminary tests yield the right results. Dr. Andersson will be presenting my case to his colleagues in the transplant group today, and he agreed that he would speak with Dr. Giles soon afterwards. So I’m hoping for some news later today or tomorrow.
Anna and I told him during the call that we had been wondering about the necessity for the transplant. By all accounts it’s a long, grueling, difficult, and risky process. My bone marrow was apparently clear as of mid-May, so I’ve been in remission there for 10 months. The spinal fluid is apparently clear, too, as of June 9, when the last sample was taken and I received my last, 6th, dose of intrathecal chemotherapy. Doing the bone marrow transplant, Dr. Andersson confirmed (as Dr. Giles had said previously), will not “cure” the leukemia in the CNS. So why do it ?
What it comes down to (and here again I think Drs. Giles, Andersson, and Tucker are in agreement) is that the relapse in the CNS is a sign, a “harbinger” in Dr. Andersson’s words, that a systemic relapse, a relapse in the bone marrow, is inevitable now: as Andersson said, it’s not a question of if anymore; it’s a question of when. The transplant—killing off my own damaged bone marrow and replacing it with Peter’s healthy stem cells—is the best hope for establishing long-term remission. But if I have another CNS relapse during the transplant process I will be in deep, deep, deep trouble: I’ll have virtually no platelets, meaning that my blood won’t clot, meaning that they won’t be able to do any intervention that might cause bleeding, such as implanting a catheter or performing a lumbar puncture. So the CNS remission needs to be solid in order to proceed. So there are delicate balances to be struck: Dr. Andersson said repeatedly that the first concern is to be as sure as possible that the treatment itself will not harm me. I’m grateful for that concern! And of course I know it’s shared by everyone involved, and I’m grateful for that as well.
As I said earlier, Dr. Andersson was hoping to present my case to his colleagues in the BMT group today (it’s Tuesday evening as I write now), and then I hope he has had a chance to speak directly with Dr. Giles. I haven’t checked email yet to see if there’s any word from him or Dr. Giles.
The phone call, and the follwup email I sent to Dr. Giles et al. the next day summarizing both the call and my experiences of the last couple weeks, and raising several questions, were a big deal for us. For me, I think, the call and the email were extensions of my recognition that I need to take a much more active part in my own treatment and recovery, and an outgrowth of a very powerful session with Bhagirit while I was still in hospital, when we talked about how to empower ourselves, about the things we could do. I’ve also been reading a book called The Patient from Hell (actually JayByrd has been reading it to me a couple of chapters at a time); it’s by a Stanford researcher (global climate change) who had lymphoma, and both chronicles his experiences and explains how he and his wife worked to ensure that his treatment was optimized, indivualized to his specific situation. I’ve learned a lot and taken heart from it, though his descriptions of the preparations preceding his own bone marrow transplant fill me with dread. The good news of course is that he’s still alive five years later, and I keep hearing from other people stories of friends and relatives who’ve been through the process and gone on to long, good lives. Those stories are precious to me: I am learning to visualize the transplant as a phase in a much larger process, and learning, too, how I can use my own strength to make the process work well.
But it’s not like everything is hard and grim all the time. Many, many people have visited, often bearing food: thanks to Wick Wadlington and Elizabeth Harris, Ivana Slavnic, Anna Sergi, Celia Hughes, Brian Bremen, and everyone else I’ve forgotten to mention. Sue Heinzelman came over on Saturday morning and cooked breakfast!, and then we had a lovely conversation. There have been other great conversations, too, both while I was in the hospital and since I’ve been home. It may sound strange to say this, but those conversations have been a gift, an unexpected positive side-effect of my illness. The world has slowed down, or at least my world has, and space for conversation has opened up. I want to find ways to continue that, to disentangle it from the illness and reintegrate it into “normal” life (not that life will ever be normal again; I mean Life After Transplant).
I’m going to stop now and get this posted or it’ll never happen. Then I’ll check email and go to bed. Thanks again to all of you for thinking of me and for your love and prayers. You make me strong.
I’ve been at home for a week now, and it’s just wonderful. I’m still weak and I get tired pretty easily, but I’ve been gaining strength every day and feeling better. I’m scheduled to see Dr. Tucker again the day after tomorrow, but haven’t been to the clinic since last Thursday. My neutrophyll count was well into the normal range then (it was 4.7), and while both my hemoglobin and platelet counts were still low, the platelets had started to come up, indicating that my body might have made some platelets on its own, and that indicated that the hemoglobin count would probably start rising as well (with a little help from the Aranesp shot I received on Wednesday afternoon—the red-cell counterpart to the Neupogen shots I’d had the last 6 days in the hospital). I’ve felt well enough to go out with Anna for a couple of dinners, and yesterday morning we went to BodyChoir. I didn’t dance—just lay on a mat at the front of the room, near where Anna was playing the music she’d selected for the dance. (The music was gorgeous; she played a Portuguese fado near the end that just broke me open, not just with sadness and grief at my own situation but with joy for all the beauty and love that filled the room.) So I lay there with Dillon, and throughout the morning people came over to pet both of us (<grin>); by the end of the dance I could feel and hear a lot of people around me, holding me, holding each other, and then the breathing turned into a wordless chanting, beautiful and deep and soothing.
Friday afternoon Anna took me over to Elke’s, to talk about nutrition and other things that will help me rebuild my strength and reduce stress levels as I prepare myself for the bone marrow transplant (more about that shortly). She began by doing some “muscle testing”—she had me press the fingers of my left hand on acupuncture points at different places in my upper body, while at the same time I joined the tips of my right thumb and middle finger and tried to resist as she tried to pull them apart. In each case she was able to break my grip very easily, meaning that each of the acupuncture points she was testing was “off.” Then she put four or five small vials into my pocket, and we repeated the procedure; this time, to my amazement, I was able to resist when she tried to pull my thumb and middle finger apart. I have no idea how that worked. Elke explained that it had something to do with a “resonance” between the frequencies of the materials in the vials and the frequency at which my body resonates. I don’t understand this, but there’s no gainsaying the difference between the first round of muscle testing and the second. The vials contained various supplements—minerals, etc.—and we’ll talk about them with Glenn Leupnitz, an extraordinarily knowledgeable nutritionist who works out of an oncology clinic, tomorrow. Meanwhile, we’ll go to Elke again late this afternoon. The most amazing part of Friday’s session was what followed the muscle testing. Elke described it as acupuncture without needles, but there’s more to it than that. After using some kind of computer-linked sensor to get a reading of various acupuncture points, Elke put some headphones over my ears and some glasses over my eyes, then inverted the chair so that I was almost upside down. She flipped a switch somewhere (presumably on the computer), and three things happened at once: in my ears I heard the sound of waves breaking on the beach, as it were “behind” pulsing electronic sounds—not music exactly, just a range of frequencies including some very deep bass tones; the chair vibrated in tandem with the bass notes; and I saw flickering red light behind my eyelids (Elke had explained that this would happen and that my blindness wouldn’t affect it since everyone has their eyes closed at this point). The sound of the waves was wonderfully right—Elke had suggested that I visualize someplace where I had been happy, and my mind turned immediately to Cape Cod, so the wave-sounds were just perfect. My mind strayed to other things, but apparently I didn’t get far from the Cape. At one point I found myself visualizing Fisher Beach Road in Truro as one would walk toward the beach—a beautiful vista of tall grasses, blueberry bushes, shingled houses, and Pamet Harbor off to the right. But then suddenly I must have been walking the other way, because I was turning right from the roadside into the sand driveway of the cottage my family rented for several years (the Anderson cottage, I think it was called). And there was Smokey, the Lab-Something (beagle, maybe?) mix whom we’d rescued from the pound when I was in 8th grade, wagging his whole body, grinning and sneezing, happy that I was home. He clicked into view like a slide in an old-fashioned slide projector. “There you are!” I said to him, delighted to see him. And suddenly I was crying, because I realized I hadn’t said good-bye to him properly—he died of a heart attack one night during my first year in graduate school, and I was so preoccupied that I didn’t really allow myself to feel anything when my father called to tell me the news. And then I was happy again, thinking that Smokey and Dillon would have liked each other and had fun together. And then my mother appeared; I could hear her bracelets jingling and saw the one-piece bathing suit she was wearing (I think she may have made it herself). She was happy—she loved it on the Cape—but didn’t say anything. I was glad to see her—she looked so young! (This would have been sometime in the mid-60s, I think, and she’d have been in her forties; she was young!) Then I was aware of myself in that chair, almost upside down and crying, wondering happily at those amazing images, astonished that they had appeared. The session ended, Elke brought me upright, and I was back in the room with her and Anna and Dillon. That night I slept better than I had in weeks, maybe months.
The previous afternoon, on Thursday, Anna and I had an hour-long conference call with Dr. Andersson, the transplant doctor from M.D. Anderson. The call was arranged by Donna Martin, the Patient Advocate—we had been feeling increasingly caught in the middle between Dr. Andersson and Dr. Giles, the leukemia specialist who’s been treating me since May, because they seemed to have quite different ideas about when it would be appropriate to begin the transplant process—an issue Anna and I don’t feel competent to resolve--and as far as we could tell the two hadn’t spoken to each other. At the end of my last visit with Dr. Andersson sometime in May, he had suggested that we meet again in late September, because he wanted to see evidence of remission in the Central Nervous System (CNS) for 4-6 months before beginning the process. But when I mentioned this to Dr. Giles, he said, “That’s a tall order!” I asked him then to talk with Dr. Andersson about it, but as far as I know that hadn’t happened. After the fact, I realized that I took the “tall order” comment to mean that Giles thought it unlikely that I could stay in remission that long. That makes me anxious all by itself, and it made me increasingly anxious about waiting till late September even to talk with Andersson again.
It was a good call: Dr. Andersson both explained the reason for his wanting to see a 4-6 month remission and agreed that it might be a good idea to begin the process in late August or early September after all, which is the timeline Dr. Giles had mentioned during our last meeting with him as well. He explained that the 4-6 month figure is a kind of informal policy at MD Andersson, which has come out of past experience: patients who underwent transplant while not in full remission had done poorly. My CNS has apparently been leukemia-fre since early June; a late August or early September start might be OK if all the preliminary tests yield the right results. Dr. Andersson will be presenting my case to his colleagues in the transplant group today, and he agreed that he would speak with Dr. Giles soon afterwards. So I’m hoping for some news later today or tomorrow.
Anna and I told him during the call that we had been wondering about the necessity for the transplant. By all accounts it’s a long, grueling, difficult, and risky process. My bone marrow was apparently clear as of mid-May, so I’ve been in remission there for 10 months. The spinal fluid is apparently clear, too, as of June 9, when the last sample was taken and I received my last, 6th, dose of intrathecal chemotherapy. Doing the bone marrow transplant, Dr. Andersson confirmed (as Dr. Giles had said previously), will not “cure” the leukemia in the CNS. So why do it ?
What it comes down to (and here again I think Drs. Giles, Andersson, and Tucker are in agreement) is that the relapse in the CNS is a sign, a “harbinger” in Dr. Andersson’s words, that a systemic relapse, a relapse in the bone marrow, is inevitable now: as Andersson said, it’s not a question of if anymore; it’s a question of when. The transplant—killing off my own damaged bone marrow and replacing it with Peter’s healthy stem cells—is the best hope for establishing long-term remission. But if I have another CNS relapse during the transplant process I will be in deep, deep, deep trouble: I’ll have virtually no platelets, meaning that my blood won’t clot, meaning that they won’t be able to do any intervention that might cause bleeding, such as implanting a catheter or performing a lumbar puncture. So the CNS remission needs to be solid in order to proceed. So there are delicate balances to be struck: Dr. Andersson said repeatedly that the first concern is to be as sure as possible that the treatment itself will not harm me. I’m grateful for that concern! And of course I know it’s shared by everyone involved, and I’m grateful for that as well.
As I said earlier, Dr. Andersson was hoping to present my case to his colleagues in the BMT group today (it’s Tuesday evening as I write now), and then I hope he has had a chance to speak directly with Dr. Giles. I haven’t checked email yet to see if there’s any word from him or Dr. Giles.
The phone call, and the follwup email I sent to Dr. Giles et al. the next day summarizing both the call and my experiences of the last couple weeks, and raising several questions, were a big deal for us. For me, I think, the call and the email were extensions of my recognition that I need to take a much more active part in my own treatment and recovery, and an outgrowth of a very powerful session with Bhagirit while I was still in hospital, when we talked about how to empower ourselves, about the things we could do. I’ve also been reading a book called The Patient from Hell (actually JayByrd has been reading it to me a couple of chapters at a time); it’s by a Stanford researcher (global climate change) who had lymphoma, and both chronicles his experiences and explains how he and his wife worked to ensure that his treatment was optimized, indivualized to his specific situation. I’ve learned a lot and taken heart from it, though his descriptions of the preparations preceding his own bone marrow transplant fill me with dread. The good news of course is that he’s still alive five years later, and I keep hearing from other people stories of friends and relatives who’ve been through the process and gone on to long, good lives. Those stories are precious to me: I am learning to visualize the transplant as a phase in a much larger process, and learning, too, how I can use my own strength to make the process work well.
But it’s not like everything is hard and grim all the time. Many, many people have visited, often bearing food: thanks to Wick Wadlington and Elizabeth Harris, Ivana Slavnic, Anna Sergi, Celia Hughes, Brian Bremen, and everyone else I’ve forgotten to mention. Sue Heinzelman came over on Saturday morning and cooked breakfast!, and then we had a lovely conversation. There have been other great conversations, too, both while I was in the hospital and since I’ve been home. It may sound strange to say this, but those conversations have been a gift, an unexpected positive side-effect of my illness. The world has slowed down, or at least my world has, and space for conversation has opened up. I want to find ways to continue that, to disentangle it from the illness and reintegrate it into “normal” life (not that life will ever be normal again; I mean Life After Transplant).
I’m going to stop now and get this posted or it’ll never happen. Then I’ll check email and go to bed. Thanks again to all of you for thinking of me and for your love and prayers. You make me strong.
posted by John Slatin at 10:45 PM
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