Out of isolation! (from 1 July)
The good news is: no more isolation procedures! This means that people can enter and leave my room at will, without having to don spacesuit-like yellow paper robes and surgical gloves, and I’m allowed to leave the room myself (not that there’s anyplace very exciting to go). In other words, the diarrhea that brought me here two weeks ago today is pretty much gone (yes, it took a long time!), and that’s really good news. Thanks so much to Anna for thinking to ask Dr. Bissett, the Infectious Disease doctor (why do I want to put that in caps?), when I could be taken off The List! He said, “I’m making a bold gesture!” and yanked off his gown. That was fun, and funny, and we had a good laugh. The bad news is that we’re still here at Seton Hospital because my white blood count is still bottom-crawling—it’s been bouncing between 0.1 and 0.2 for the past four or five days, and the neutrophyll count (not just the white count) has to hit 500 and show a clear upward trend before Dr. Tucker willfeel that he can safely release me on my own recognizance. I’m shooting for Tuesday—it will be fitting to be released on Independence Day!
IQuick note from later in the day: Kunday came by a little before 4:00 with the news that it was getting cooler outside, wind was rising, and it was going to rain. She suggested we go outside, and since Anna and I had just begun a little walk down the hall with Dillon—my first venture outside the room!—we changed our plans. Someone found my shoes; I put them on over the hospital slipper-socks, remembered that I shold be wearing a mask since I have no immune system, and off we went. Dillon was thrilled—he had gotten very excited when I picked up the harness and slipped it over his head—and when we got outside and sat down on a bit of cement near a fountain/waterfall he stayed very close to me and let me put my arms around his neck and hold him close. I was crying, which is really not a good idea when you’re wearing a mask, but so what? It was so wonderful to be outside. We stayed out about 10 minutes, then came back upstairs; I was exhausted but very, very pleased. Kunda, thanmks for making that suggestion!)
I didn’t have a chance to write last weekend, so I want to mark two things about it here. First, last Saturday we had been due to leave for a two-week vacation on Cape Cod, and I’m very disappointed that we didn’t get to do that, not only because I love the Cape so much and badly wanted to be there, but also because this is the second year in a row Anna’s had to spend her badly needed vacation in the hospital with me, and I’m sad that she hasn’t had the freedom to travel and explore. Now I’ve backed myself into the second thing I want to mark: last Sunday was the one-year anniversary of my AML diagnosis. I’m so thankful to be alive. I had to stop for a minute after that sentence—it took my breath away, brought tears to my eyes, and I just couldn’t continue. What a long, impossibly short, terrible, beautiful,ugly, wondrous, utterly amazing year it’s been, and continues to be.
Elke reminded me earlier this evening to visualize what comes after the bone marrow transplant: full health, dancing at BodyChoir, talking with friends, working, enjoying the full taste of meals, traveling… And suddenly I was right there, seeing it and feeling it and tasting it and grinning; even my voice was stronger. I have been caught up in imagining the worst moments of the treatment instead of focusing on the outcome, the point of the treatment: to be well. It sounds self-evident when I write it like that, and maybe it is; but I had lost track of it for a while there, and I’m very grateful to Elke for the reminder. It goes along with the material that came up yesterday in an energy session with Bhagirit, which in turn dovetailed with what JayByrd had been reading to me the other night about going to the spaces that scare us, about groundlessness, about discovering myself there, in those scary places, still standing, OK. I thought of Frost, in poems like “Mending Wall” and “Birches” and “The Wood-pile” and “The Road Not Taken,” coming again and again to the imperative to choose, to take some action, when there is no basis for choosing. The lines of tall slim trees in “The Wood-pile” are too much alike to mark or name a place by, so as to say for certain he was here or somewhere else; there’s no need for that stone wall he and his neighbor rebuild each year in “Mending Wall,” no visible difference between the road taken and the other one—no difference except the ones made by human choices grounded only in the need to choose. I haven’t read those poems for years, though I’ve thought of them often; they come now as beautiful, terrible, clear, the place that scares me, myself in my need to choose.
I need to gather myself for the journey. Fortunately, I have time to prepare—a couple of
Still no network access. Will have to figure out how to post this, or else just wait till Monday and ask Diane to do it again for me, the way she did the last one I sent. We’ll see.months to eat well, to exercise, to begin practicing meditation, to look toward the future from within the here and now, to visualize good things happening within my body right down to the subatomic level—the terrible light of radiation doing its work to melt the tumors in my brain, the chemotherapy rooting out any lurking leukemia cells in the bone marrow since my own immune system is no longer capable of that work. That’s my work over the next couple of months and beyond. I’m being helped along the way by many, many people. It’s truly awesome. Thank you, thank you.
IQuick note from later in the day: Kunday came by a little before 4:00 with the news that it was getting cooler outside, wind was rising, and it was going to rain. She suggested we go outside, and since Anna and I had just begun a little walk down the hall with Dillon—my first venture outside the room!—we changed our plans. Someone found my shoes; I put them on over the hospital slipper-socks, remembered that I shold be wearing a mask since I have no immune system, and off we went. Dillon was thrilled—he had gotten very excited when I picked up the harness and slipped it over his head—and when we got outside and sat down on a bit of cement near a fountain/waterfall he stayed very close to me and let me put my arms around his neck and hold him close. I was crying, which is really not a good idea when you’re wearing a mask, but so what? It was so wonderful to be outside. We stayed out about 10 minutes, then came back upstairs; I was exhausted but very, very pleased. Kunda, thanmks for making that suggestion!)
I didn’t have a chance to write last weekend, so I want to mark two things about it here. First, last Saturday we had been due to leave for a two-week vacation on Cape Cod, and I’m very disappointed that we didn’t get to do that, not only because I love the Cape so much and badly wanted to be there, but also because this is the second year in a row Anna’s had to spend her badly needed vacation in the hospital with me, and I’m sad that she hasn’t had the freedom to travel and explore. Now I’ve backed myself into the second thing I want to mark: last Sunday was the one-year anniversary of my AML diagnosis. I’m so thankful to be alive. I had to stop for a minute after that sentence—it took my breath away, brought tears to my eyes, and I just couldn’t continue. What a long, impossibly short, terrible, beautiful,ugly, wondrous, utterly amazing year it’s been, and continues to be.
Elke reminded me earlier this evening to visualize what comes after the bone marrow transplant: full health, dancing at BodyChoir, talking with friends, working, enjoying the full taste of meals, traveling… And suddenly I was right there, seeing it and feeling it and tasting it and grinning; even my voice was stronger. I have been caught up in imagining the worst moments of the treatment instead of focusing on the outcome, the point of the treatment: to be well. It sounds self-evident when I write it like that, and maybe it is; but I had lost track of it for a while there, and I’m very grateful to Elke for the reminder. It goes along with the material that came up yesterday in an energy session with Bhagirit, which in turn dovetailed with what JayByrd had been reading to me the other night about going to the spaces that scare us, about groundlessness, about discovering myself there, in those scary places, still standing, OK. I thought of Frost, in poems like “Mending Wall” and “Birches” and “The Wood-pile” and “The Road Not Taken,” coming again and again to the imperative to choose, to take some action, when there is no basis for choosing. The lines of tall slim trees in “The Wood-pile” are too much alike to mark or name a place by, so as to say for certain he was here or somewhere else; there’s no need for that stone wall he and his neighbor rebuild each year in “Mending Wall,” no visible difference between the road taken and the other one—no difference except the ones made by human choices grounded only in the need to choose. I haven’t read those poems for years, though I’ve thought of them often; they come now as beautiful, terrible, clear, the place that scares me, myself in my need to choose.
I need to gather myself for the journey. Fortunately, I have time to prepare—a couple of
Still no network access. Will have to figure out how to post this, or else just wait till Monday and ask Diane to do it again for me, the way she did the last one I sent. We’ll see.months to eat well, to exercise, to begin practicing meditation, to look toward the future from within the here and now, to visualize good things happening within my body right down to the subatomic level—the terrible light of radiation doing its work to melt the tumors in my brain, the chemotherapy rooting out any lurking leukemia cells in the bone marrow since my own immune system is no longer capable of that work. That’s my work over the next couple of months and beyond. I’m being helped along the way by many, many people. It’s truly awesome. Thank you, thank you.
posted by John Slatin at 9:19 PM
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