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the stuff of days

Posted Feb 10 2006 12:00am
DS2 lost his first tooth this evening during tooth-brushing, and was very upset about it: That's not supposed to happen until I'm five! (He'll be five on Monday.) His sense of the order of things was affronted, and it took more than a few minutes to get him to calm down, stop screaming, and rinse his mouth out.

Even though I've acquired 21 cumulative years of direct experience with my kids, their rigidity continues to amaze me. People who think children flourish when all restrictions are removed are crazy. My sons would curl up on their beds and do nothing, overwhelmed by the lack of structure. My daughter would dash around in a mad frenzy until she collapsed. None of them would do well. Still, I wish they could lighten up on these ideas, the notion That's the way things should be, all the time, for every situation. They think they know everything, and nuance is mostly out of their conceptual grasp for now, but it will come.

DS1 has started reading the newspaper and that has opened a whole 'nother galaxy of nearly unanswerable questions. Yesterday we had to have the "illegal gambling primer", because the Coyotes' assistant coach has been accused of running a nationwide sports betting network. This morning's incredibly complex, racially sensitive topic was illegal immigration. (God, help me.) Earlier in the week, I had to explain to him that just because the men who flew the planes into the WTC on 9/11 were from Saudi Arabia, not all Saudis are fanatics who hate the US. Ditto, Muslims. He wants to understand current events but it's going to take him a while to come up to speed, and he has no idea how much history he's lacking. (I do have an idea of how much I'm lacking: huge amounts.) So I have to boil everything down and try to hit the high points, but sometimes it's just not possible for me, I don't know enough myself.

Times like these, I pity his teachers. They've told me how he can drive the class to topics they don't usually discuss: We always learn a lot from him.

Then there's the girl. Her newest/oldest thing is taking twice as long as everyone else to eat dinner, even when there's nothing objectionable on her plate. She was like that the day she was born and maintains her bizarre relationship with food. I see it for what it is (a power play), but I wonder if there is some physical thing, some switch in her brain that isn't toggled correctly. Newborns usually like to eat, and she didn't, and you can't ascribe that to a personality issue. We tell her she has to eat. She knows, too: she can dole out nutrition advice as well as I can, and she understands what's she saying. She just doesn't think any of that stuff applies to her. At this point she's a poster child for the Future Eating Disorders of America, which is a very scary prospect.

Speaking of scary: my throat has felt very lumpy the past few days or so, with definite changes in swallowing (it is more difficult). There are a number of possibilities: the nerves have finally grown back there, so I can at last feel what's happening with scar tissues and all; some slight infection is giving me swollen glands (I do have some left); the cancer's back.

Of course I'm terrified that the cancer's back, and I really don't want to go to Houston and have them tell me that. But I have to go, I will go, and maybe it won't be back. I am so, so bad at waiting to find out. I psyche myself out -- I have a bad feeling about this -- and I do have a bad feeling now, but I think it's just because I'm scared. Part of my psyching myself out? Looking over those last labs, my TG was reported as <0.9, which means undetectable, right? Well, <0.9 is nice, but then while leafing through my records from MDA while I was at my rheumatologist on Tuesday, I noticed my pre-op TG, when I was quite riddled with cancer, was 0.8, which is, of course, less than 0.9.

I know I shouldn't do this, shouldn't agonize over details like this, shouldn't let phrases like "extracapsular invasion identified" on the pathology report freak me out. It doesn't help that they write that particular phrase in all caps so it shouts at you: EXTRACAPSULAR INVASION IDENTIFIED. Reading that phrase more than once in the path report kind of makes an impression that maybe they didn't get it all. Oh, sure, they got all the nodes (I think), but when it's out of the nodes, then what? Where does it go?

I didn't have any I-131 to kill off anything remaining, and keeping my TSH suppressed didn't such a great job of keeping the stuff from proliferating between surgeries. This stuff is pernicious: it persisted through two major doses of radiation and managed to grow in the near-total absence of thyroid stimulating hormone.

I argue with myself: why do this, why give all these fears so much attention? I'm hoping that by writing them out I can ignore them for a while. I am very tired but back in that place: I don't want to waste time sleeping.

Back in the rational part of my brain, I know I have statistics on my side, and my prognosis is pretty good owing to the fact I was diagnosed before I hit 45 and I have no distant metastases. But even here I find things to quibble with: but I needed another surgery for the lymph nodes, and there was extensive local invasion. I won't get answers to the questions I'm asking until I'm sitting with my doctors in Houston. This is going to be a very long couple of weeks.

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