Milestones
As of yesterday I’d been home from the hospital for a month (including last weekend’s short stay). It’s not a long time in the grand scheme of things, but it does seem like some sort of milestone just the same. I marked the occasion by going to the SWRCC (Southwest Regional Cancer Center) for another blood test, to see if my counts were high enough to start the next round of chemo.
They weren’t, but they’re getting there. The hemoglobin count was actually down a little, to 12.4 from 12.7 on Friday. But everything else seems to be on the way up. My platelets were very high (“You could donate platelets,” said Micky, the chemo nurse who brought me my lab results). The ANC (Absolute Neutrophyll Count, a term I hadn’t heard before) was up slightly, from .2 on Friday to .4 yesterday—it needs to reach 1.2 before chemo can start again. The good news is that my monocytes were up to 66%; this was another term I hadn’t heard before, but Micky said it’s an indicator that the neutrophyll count is on the way up. The upturn in the platelet count is an indicator, too, at least in my case—when I was in the hospital, my platelet count shot way up several days before the neutrophyll count started to climb. Micky showed the results to Dr. Tucker, who said I should come in for another test on Thursday; depending on the results, the next round of chemo (second of four consolidation rounds) will start either Friday or next Monday.
Dr. Tucker said I’d “surprised” him—my white count had seemed to be on the way up after bottoming out right around the time I went into the hospital last weekend, but then it had dropped again. I don’t think I like giving that sort of surprise. That makes me chary about the counts we’re getting now, especially since my hemoglobin was down yesterday, and I feel a little tired this morning for no particular reason. So I don’t quite believe that I’ll be ready for the next round either Friday or Monday, though rationally I know I probably will. It’s strange, not being able to count on your own blood. And I don’t know whether to hope for Friday or Monday! Friday would be good, I guess—the sooner we start up again, the sooner the whole thing will be done. But I don’t really want to be thinking like that—I need to be in the flow, whatever that is, and not get ahead of myself. Having been through one cycle creates expectations about what the second one will be like, but those expectations probably aren’t reliable—so far, just about nothing has been quite the way I’d expected it to be, and I suspect that’s the only thing we can really count on in all this. I keep telling myself that Anna and I have to keep making plans, both individually and together; but we also have to know that those plans can only be provisional, that they’re subject to change at a moment’s notice (or for that matter without even that much). I think that that’s always been true, really, but it wasn’t something I’d acknowledged in the days BL (Before Leukemia). All the reading I’d ever done about contingency, ephemerality, chance, self-organization, order, chaos—it all turned out on the one hand to have been just reading, just notional understanding. But then, on the other hand, all that reading (not the specifics but the general drift) is coming back to help me understand the situation I’m in now. Not that I feel like I understand it: it’s more that I’m trying to relax (!) and allow myself to experience it fully, whatever “it” is. “Dream as though I’ll live forever,/Live like I’ll die today,” as Zoe Lewis sings in “Going On.”
Speaking of plans, last week’s big events weren’t about me at all, though. Friday evening was the opening of the Austin Museum of Art’s show 22 to Watch, in which Ledia has a big installation called Inland Sea—it brings water from the big, sort of boring fountain out in front of the building (AMOA has the bottom floor of an office building at the corner of 9th and Congress downtown) and pumps it through clear PVC pipe that takes it inside the museum space and through a whole series of bending and turning pipes, then takes it back out to the fountain again. I went to the opening with Deborah Hay (the choreographer) and Rino Pizzi, and got there early enough to hear the sound of the water moving through the pipes. There were a few other pieces in the show that produced sound, too, which I enjoyed as we went on a 30-minute tour of the show led by Dana Fries-Hanson, the AMOA director. The tour also underscored how little physical stamina I have, even after a month—by the time the tour ended I was really tired and had to sit down for a while. (Turned out I was parked on a bench just opposite Ledia’s piece, so I got to eavesdrop a little as Dana brought various museum patrons over to see it.)
Meanwhile, Anna was in Houston at a workshop on self-relations therapy taught by Stephen Gilligan, the major proponent of self-relations theory. She’s been interested in self-relations for some time now, and has attended several workshops as well as participating actively in an email list that draws practitioners from around the world, and she had had this Houston workshop on her calendar and in her plans for months and months. Her plan to go seemed to be in jeopardy when I had to go back into the hospital last weekend, and we were both very sad about that. But then it turned out that by Wednesday night I felt strong enough and healthy enough for her to go, so she drove off early early Thursday morning in order to get to the site outside (in The Woodlands, unfortunately Tom Delay territory) in time for the workshop’s 9:30 start. She felt some anxiety about leaving me at home, but it was really important for her to go and I’m really delighted that my health didn’t hold her back. And of course I wasn’t alone—I had dinner with friends each night, and others came by for lunch, and friends and neighbors called to ask if I needed anything from the grocery store. And Ledia was in and out, putting the finishing touches on her installation and then coming home to check email and grab something to eat, then going out on another errand.
So there were other kinds of milestones last week, measured not in terms of time but in terms of possibilities open and acted upon. We’d reached a point in the chemo cycle where Anna could pursue her own interests secure in the knowledge that I was well enough to manage, and we could maintain and deepen our connections with new and old friends while Ledia was bringing her creative work to fruition even as she prepared to drive out to San Francisco later this week to explore the possibilities of a more permanent move.
Thursday will mark another milestone of sorts: two months from the day Anna took me to the Emergency Room at St. David’s, where I was diagnosed and admitted to the hospital. I’m not ready to tackle the importance of that one just yet.
They weren’t, but they’re getting there. The hemoglobin count was actually down a little, to 12.4 from 12.7 on Friday. But everything else seems to be on the way up. My platelets were very high (“You could donate platelets,” said Micky, the chemo nurse who brought me my lab results). The ANC (Absolute Neutrophyll Count, a term I hadn’t heard before) was up slightly, from .2 on Friday to .4 yesterday—it needs to reach 1.2 before chemo can start again. The good news is that my monocytes were up to 66%; this was another term I hadn’t heard before, but Micky said it’s an indicator that the neutrophyll count is on the way up. The upturn in the platelet count is an indicator, too, at least in my case—when I was in the hospital, my platelet count shot way up several days before the neutrophyll count started to climb. Micky showed the results to Dr. Tucker, who said I should come in for another test on Thursday; depending on the results, the next round of chemo (second of four consolidation rounds) will start either Friday or next Monday.
Dr. Tucker said I’d “surprised” him—my white count had seemed to be on the way up after bottoming out right around the time I went into the hospital last weekend, but then it had dropped again. I don’t think I like giving that sort of surprise. That makes me chary about the counts we’re getting now, especially since my hemoglobin was down yesterday, and I feel a little tired this morning for no particular reason. So I don’t quite believe that I’ll be ready for the next round either Friday or Monday, though rationally I know I probably will. It’s strange, not being able to count on your own blood. And I don’t know whether to hope for Friday or Monday! Friday would be good, I guess—the sooner we start up again, the sooner the whole thing will be done. But I don’t really want to be thinking like that—I need to be in the flow, whatever that is, and not get ahead of myself. Having been through one cycle creates expectations about what the second one will be like, but those expectations probably aren’t reliable—so far, just about nothing has been quite the way I’d expected it to be, and I suspect that’s the only thing we can really count on in all this. I keep telling myself that Anna and I have to keep making plans, both individually and together; but we also have to know that those plans can only be provisional, that they’re subject to change at a moment’s notice (or for that matter without even that much). I think that that’s always been true, really, but it wasn’t something I’d acknowledged in the days BL (Before Leukemia). All the reading I’d ever done about contingency, ephemerality, chance, self-organization, order, chaos—it all turned out on the one hand to have been just reading, just notional understanding. But then, on the other hand, all that reading (not the specifics but the general drift) is coming back to help me understand the situation I’m in now. Not that I feel like I understand it: it’s more that I’m trying to relax (!) and allow myself to experience it fully, whatever “it” is. “Dream as though I’ll live forever,/Live like I’ll die today,” as Zoe Lewis sings in “Going On.”
Speaking of plans, last week’s big events weren’t about me at all, though. Friday evening was the opening of the Austin Museum of Art’s show 22 to Watch, in which Ledia has a big installation called Inland Sea—it brings water from the big, sort of boring fountain out in front of the building (AMOA has the bottom floor of an office building at the corner of 9th and Congress downtown) and pumps it through clear PVC pipe that takes it inside the museum space and through a whole series of bending and turning pipes, then takes it back out to the fountain again. I went to the opening with Deborah Hay (the choreographer) and Rino Pizzi, and got there early enough to hear the sound of the water moving through the pipes. There were a few other pieces in the show that produced sound, too, which I enjoyed as we went on a 30-minute tour of the show led by Dana Fries-Hanson, the AMOA director. The tour also underscored how little physical stamina I have, even after a month—by the time the tour ended I was really tired and had to sit down for a while. (Turned out I was parked on a bench just opposite Ledia’s piece, so I got to eavesdrop a little as Dana brought various museum patrons over to see it.)
Meanwhile, Anna was in Houston at a workshop on self-relations therapy taught by Stephen Gilligan, the major proponent of self-relations theory. She’s been interested in self-relations for some time now, and has attended several workshops as well as participating actively in an email list that draws practitioners from around the world, and she had had this Houston workshop on her calendar and in her plans for months and months. Her plan to go seemed to be in jeopardy when I had to go back into the hospital last weekend, and we were both very sad about that. But then it turned out that by Wednesday night I felt strong enough and healthy enough for her to go, so she drove off early early Thursday morning in order to get to the site outside (in The Woodlands, unfortunately Tom Delay territory) in time for the workshop’s 9:30 start. She felt some anxiety about leaving me at home, but it was really important for her to go and I’m really delighted that my health didn’t hold her back. And of course I wasn’t alone—I had dinner with friends each night, and others came by for lunch, and friends and neighbors called to ask if I needed anything from the grocery store. And Ledia was in and out, putting the finishing touches on her installation and then coming home to check email and grab something to eat, then going out on another errand.
So there were other kinds of milestones last week, measured not in terms of time but in terms of possibilities open and acted upon. We’d reached a point in the chemo cycle where Anna could pursue her own interests secure in the knowledge that I was well enough to manage, and we could maintain and deepen our connections with new and old friends while Ledia was bringing her creative work to fruition even as she prepared to drive out to San Francisco later this week to explore the possibilities of a more permanent move.
Thursday will mark another milestone of sorts: two months from the day Anna took me to the Emergency Room at St. David’s, where I was diagnosed and admitted to the hospital. I’m not ready to tackle the importance of that one just yet.
posted by John Slatin at 8:53 AM
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