(no subject)
Feb. 3rd, 2010 09:25 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
mrockwellWriting
I don't think it's a great secret to those who know me that I'm not a big Scalzi fan. However, in the spirit of helping out fellow authors, I'd like to direct you to this post of his, RE: the Amazon-Macmillan War. I should note that this doesn't affect me personally, but I think it's worrisome enough to call your attention to it. It's hard enough to make any kind of living as a writer without having the place you get most of your sales from refuse to carry your work for reasons that have absolutely nothing to do with you. So, read the post, and, if you're so inclined, do what Scalzi says. Because even a broken clock is right twice a day. Heh.
Everything Else
So, no scans today after all. After going to the clinic to get Max's port accessed and then heading over to PCH for Max's injection -- AND waiting about three hours -- the radiologist refused to do it. Apparently there's some European study out saying that blood pressure and heart medications (which Max has been on since diagnosis) can give false negatives on the scans. They supposedly interfere with the body's ability to absorb the isotope needed to show how active the tumor is, meaning that you could get clean scans when the disease is actually still there.
Max's oncologist was unaware of the study (and I'm sure he's not the only one, as kids with NB are often on blood pressure meds and these scans are routine -- Max has already had two done while on the meds), so he's consulting with Max's nephrologist and the COG study chair and hopefully together they can come up with some consensus as to our next course of action. Right now it looks like there are three possibilities: 1) make no changes to Max's medication and go ahead with the scans as planned, though now we'd have to do them next week, 2) switch Max to a different medication (one that would require daily trips to the clinic to get his blood pressure monitored) and do the scans in two weeks, or 3) take Max off the medication completely and do the scans in two weeks.
Whatever the decision, it's all been very frustrating, and it means that the scanxiety is going to be dragged out for at least another week. And on top of THAT, we now have to worry that if this study is correct, does that mean Max's previous scans could be inaccurate? Could he have more disease left than we think? God, what an awful thought! If I thought my stomach was in knots before, it's nothing compared to the pit of roiling acid that's taken up residence there now. :(
I don't think it's a great secret to those who know me that I'm not a big Scalzi fan. However, in the spirit of helping out fellow authors, I'd like to direct you to this post of his, RE: the Amazon-Macmillan War. I should note that this doesn't affect me personally, but I think it's worrisome enough to call your attention to it. It's hard enough to make any kind of living as a writer without having the place you get most of your sales from refuse to carry your work for reasons that have absolutely nothing to do with you. So, read the post, and, if you're so inclined, do what Scalzi says. Because even a broken clock is right twice a day. Heh.
Everything Else
So, no scans today after all. After going to the clinic to get Max's port accessed and then heading over to PCH for Max's injection -- AND waiting about three hours -- the radiologist refused to do it. Apparently there's some European study out saying that blood pressure and heart medications (which Max has been on since diagnosis) can give false negatives on the scans. They supposedly interfere with the body's ability to absorb the isotope needed to show how active the tumor is, meaning that you could get clean scans when the disease is actually still there.
Max's oncologist was unaware of the study (and I'm sure he's not the only one, as kids with NB are often on blood pressure meds and these scans are routine -- Max has already had two done while on the meds), so he's consulting with Max's nephrologist and the COG study chair and hopefully together they can come up with some consensus as to our next course of action. Right now it looks like there are three possibilities: 1) make no changes to Max's medication and go ahead with the scans as planned, though now we'd have to do them next week, 2) switch Max to a different medication (one that would require daily trips to the clinic to get his blood pressure monitored) and do the scans in two weeks, or 3) take Max off the medication completely and do the scans in two weeks.
Whatever the decision, it's all been very frustrating, and it means that the scanxiety is going to be dragged out for at least another week. And on top of THAT, we now have to worry that if this study is correct, does that mean Max's previous scans could be inaccurate? Could he have more disease left than we think? God, what an awful thought! If I thought my stomach was in knots before, it's nothing compared to the pit of roiling acid that's taken up residence there now. :(
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no subject
Date: 2010-02-03 05:01 pm (UTC)No one knows more than me how hard this is and how difficult it is to trust the doctors are making the right choices. But trust and faith in the doctors are all we have in the end.
If you have any doubts at all, seek other opinions. Have Max's peds doctor call City of Hope for a consult or someone at the Mayo Clinic. The doctors at PCH are good, but they are not the only game in town.
::hugs:: It will be okay. Keep believing that.
no subject
Date: 2010-02-03 05:25 pm (UTC)no subject
Date: 2010-02-04 01:51 am (UTC)It has to be okay. It just has to be.
Not sleeping for two weeks is not going to help matters, so just take the time, as others have said before me, to breathe, and trust that it *will* be okay.
no subject
Date: 2010-02-04 01:41 pm (UTC)Breathing is good.
Thinking of you.