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Jun. 14th, 2004 02:21 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
stakebaitI am home. Mom is... jittery. The decision on the chemo is bothering her, not so much the chemo itself as what it implies. Just how high risk is she, just how much of this stuff -- so strong that if they miss the vein it can burn your skin until you need a graft -- should she have pumped into her blood?
Some kind of chemo is pretty much a given. The question is which drugs -- CMF, AC, or some kind of clinical trial that would let her substitute Taxol, maybe, (for one) and add Taxol and mayber Herceptin to AC for the other. And for how long -- four weeks or six, or a whole year, on the trial she's not sure she qualifies for. Could she add Taxol without a trial? Should she? There aren't any clear answers. We stayed up late researching and printing articles and arguing about what they do or don't mean. It's a gray area, a judgement call, and some of the answers we want they don't have, because the trials aren't done yet.
But the subtext to all of this is fear. Not an unreasonable fear, or an exaggerated fear, but the real, rational fear of "I could die from this." It confused me at first because I don't think we have any new information, really, but of course it doesn't have to be new, it just has to be brought home to her, and that's what's happening. So her voice gets tight and her toe taps and she insists with great vigor on things that really don't make any difference to her decision or the interpretation of some study, because they speak to her emotional point, which is Accck!
And along with that is the fear that we'll guess wrong. She wants the choice to be obvious, unambiguous, guaranteed. She doesn't want to have to pick one and live with the nagging sense that she should have picked the other, had one more test, read one more article. But that's how it is.
I'm not really trying to make her unafraid at this point, though I do try to head her off when fear is leading her into worst-case readings. Mostly I'm just trying to make sure the tail doesn't wag the dog. We don't want to eliminate treatment options because she doesn't want to need that much treatment. I don't want her to need that much treatment either, but if she does need it I want her to have it.
I would sort of like to say "if there's even a chance I want her to have it", but that doesn't work either, because the side effects can be worse than the disease.
Mer
Some kind of chemo is pretty much a given. The question is which drugs -- CMF, AC, or some kind of clinical trial that would let her substitute Taxol, maybe, (for one) and add Taxol and mayber Herceptin to AC for the other. And for how long -- four weeks or six, or a whole year, on the trial she's not sure she qualifies for. Could she add Taxol without a trial? Should she? There aren't any clear answers. We stayed up late researching and printing articles and arguing about what they do or don't mean. It's a gray area, a judgement call, and some of the answers we want they don't have, because the trials aren't done yet.
But the subtext to all of this is fear. Not an unreasonable fear, or an exaggerated fear, but the real, rational fear of "I could die from this." It confused me at first because I don't think we have any new information, really, but of course it doesn't have to be new, it just has to be brought home to her, and that's what's happening. So her voice gets tight and her toe taps and she insists with great vigor on things that really don't make any difference to her decision or the interpretation of some study, because they speak to her emotional point, which is Accck!
And along with that is the fear that we'll guess wrong. She wants the choice to be obvious, unambiguous, guaranteed. She doesn't want to have to pick one and live with the nagging sense that she should have picked the other, had one more test, read one more article. But that's how it is.
I'm not really trying to make her unafraid at this point, though I do try to head her off when fear is leading her into worst-case readings. Mostly I'm just trying to make sure the tail doesn't wag the dog. We don't want to eliminate treatment options because she doesn't want to need that much treatment. I don't want her to need that much treatment either, but if she does need it I want her to have it.
I would sort of like to say "if there's even a chance I want her to have it", but that doesn't work either, because the side effects can be worse than the disease.
Mer
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Date: 2004-06-14 08:30 pm (UTC)Mer