Saturday, March 06, 2004
Okay. So I had my one-month follow-up with my doctor on the test area. He asked me questions about how the skin responded to the radiation, and asked me what I think of the progress. I explained that it looks and feels and acts like very different skin. I haven’t put anything topical on it in two months, and yet it hasn’t flared up at all after the mild ‘melting’ away of several lesions around the middle part of treatment. He agreed that it looked good, and asked me what I wanted to do. I was honest and said that maybe a little more time is needed to really know for sure, but I thought it was great and would like to get started as soon as possible. We made another appointment for three weeks, at which time he will examine again and if good get started.
Now the frustrating part. My RO doesn’t want to do the whole thing at once (yes, again). He first said that it would be too much of an ordeal to do all at once—an ordeal that, I explained, I was prepared for. He then said that he wanted to do one half at a time, or by a total skin process, whereby you stand back and let the electron beam defract enough to cover the whole area. This, of course, cannot get to the groin, between the thighs, inside the buttocks, etc. I explained that to him—that I expected to be doing this in pieces—probably about 8, given the limits in beam size. He then told me that, in all honesty, the reason he did not think it was possible to do it all at once was that it wasn’t fair to the technicians to spend nearly an hour every day on one patient. I’m not sure what that means, but I’m going to let him think this over, as he said he would, over the next three weeks. I traveled a long way each day to do an 8x8cm area, because I wanted to get the whole thing done. Now I may have to travel 40 more times instead of 20—four more months instead of two. I do feel very lucky to be here, don’t mistake that for a second. But I need a better excuse than that to put off doing the whole thing. The technicians’ job is to irradiate. If it takes eight repositionings for one patient instead of one position for eight patients, what’s the difference? I can understand if treating me would squeeze other patients off the schedule, but like I’ve said before, the hospital’s day is never fully booked. I can even understand, somewhat, if the doctor wanted to be paid more to do a longer procedure. But the hospital’s getting the insurance check, I assume. How the technicians’ time (which would be the same in total once the second half is done, probably even longer) is worth more than my avoiding the pain of a whole third round of pain and radiation hell, I don’t know. Again, did I mention the commute?
Oh, also, my RO thinks it’s very risky to try to align so many pieces, given that there is so much overlapping to avoid (the human body can handle about 60Gy, an overlap would give you 80Gy, causing real damage even to the sliver of overlap). Again, I’m just a layperson, but if you take the time to get it right, it should be okay, right? And again, isn’t it the technicians’ job to take their time to get it right? I think that we’ve all seen in our various jobs that it’s not always the most serious or most weighty tasks that demand the most time and energy. Sometimes, it will be disproportionate. Here, a dinky little (in an oncology department’s view) skin problem may not be as serious as any of the various cancers they deal with, but that doesn’t mean it’s not fair to spend more time on me. It’s only for twenty days (and, heck, I really really appreciate it!) Now, I don’t even know if this is what he meant, but in case it is I don’t buy it.
That’s it for now. It’s clearly not that bad of a dilemma: I know that I’m very lucky to have gotten this far, and to have gotten these promising results. I know that even if he insists on splitting it up, I could still by the end of June have a new ass. That’s perspective for you.
I ask any of the irradiated for their thoughts, especially Alan, who had to deal with lining up and the avoidance of overlapping. I assume others did, too (EJ, maybe?). Alan, I know Dr. B and his technicians took a lot of time every day aligning.
All my love to everyone.
Now the frustrating part. My RO doesn’t want to do the whole thing at once (yes, again). He first said that it would be too much of an ordeal to do all at once—an ordeal that, I explained, I was prepared for. He then said that he wanted to do one half at a time, or by a total skin process, whereby you stand back and let the electron beam defract enough to cover the whole area. This, of course, cannot get to the groin, between the thighs, inside the buttocks, etc. I explained that to him—that I expected to be doing this in pieces—probably about 8, given the limits in beam size. He then told me that, in all honesty, the reason he did not think it was possible to do it all at once was that it wasn’t fair to the technicians to spend nearly an hour every day on one patient. I’m not sure what that means, but I’m going to let him think this over, as he said he would, over the next three weeks. I traveled a long way each day to do an 8x8cm area, because I wanted to get the whole thing done. Now I may have to travel 40 more times instead of 20—four more months instead of two. I do feel very lucky to be here, don’t mistake that for a second. But I need a better excuse than that to put off doing the whole thing. The technicians’ job is to irradiate. If it takes eight repositionings for one patient instead of one position for eight patients, what’s the difference? I can understand if treating me would squeeze other patients off the schedule, but like I’ve said before, the hospital’s day is never fully booked. I can even understand, somewhat, if the doctor wanted to be paid more to do a longer procedure. But the hospital’s getting the insurance check, I assume. How the technicians’ time (which would be the same in total once the second half is done, probably even longer) is worth more than my avoiding the pain of a whole third round of pain and radiation hell, I don’t know. Again, did I mention the commute?
Oh, also, my RO thinks it’s very risky to try to align so many pieces, given that there is so much overlapping to avoid (the human body can handle about 60Gy, an overlap would give you 80Gy, causing real damage even to the sliver of overlap). Again, I’m just a layperson, but if you take the time to get it right, it should be okay, right? And again, isn’t it the technicians’ job to take their time to get it right? I think that we’ve all seen in our various jobs that it’s not always the most serious or most weighty tasks that demand the most time and energy. Sometimes, it will be disproportionate. Here, a dinky little (in an oncology department’s view) skin problem may not be as serious as any of the various cancers they deal with, but that doesn’t mean it’s not fair to spend more time on me. It’s only for twenty days (and, heck, I really really appreciate it!) Now, I don’t even know if this is what he meant, but in case it is I don’t buy it.
That’s it for now. It’s clearly not that bad of a dilemma: I know that I’m very lucky to have gotten this far, and to have gotten these promising results. I know that even if he insists on splitting it up, I could still by the end of June have a new ass. That’s perspective for you.
I ask any of the irradiated for their thoughts, especially Alan, who had to deal with lining up and the avoidance of overlapping. I assume others did, too (EJ, maybe?). Alan, I know Dr. B and his technicians took a lot of time every day aligning.
All my love to everyone.
