Friday, July 8, 2011


Wednesday we saw the surgeon, Dr. Hanto, again. He looked at the incision, agreed that everything continues to look good, and took out the drain -- a piece of plastic tubing that had been coming out of Deb's side and attaching to a little plastic bottle she had to empty pinkish fluid out of twice a day.

I had pictured the drain like a beer tap, going in just far enough to get past the barrier of skin. But in fact they pulled out more than two feet of tube, the last section being wider than the first, so that the hole had to open up a little further to let it out. It was a teeth-gritting experience, and Deb has felt a little internally bruised since.

Still, she's glad to have it out. The cyborg-like tube had made her feel unpresentable, and she worried about being out in crowds where the bottle might get jostled. So we may be more sociable now.

In general, Deb is very much like her normal self, but comes in smaller doses. Her main symptoms are a short attention span, not much patience, and very little stamina. (Strangely, I also have a short attention span and very little stamina. It's like the sympathetic pregnancy symptoms Dads-to-be sometimes get.)

We're still trying to figure out how to think about the future. Dr. Hanto, with a surgeon's typical confidence, was undisturbed that the surgery didn't get clean margins. He said he'd be "very surprised" if the thing he took out grew back. He answered our questions patiently, but I could tell that our attempts to visualize worst-case scenarios struck him as strange. To him the epithelioid angiomyolipoma was not exactly a cancer, but mostly just a growth in an unfortunate location.

Last week when we saw Dr. Pandya, the oncologist, she gave us a more uncertain view. Epithelioid angiomyolipomas are so rare that nobody really knows why they start growing or what they might do next. We'll do an ultrasound in September and see what we see.

This intangible factor is where we find ourselves missing our 15-year relationship with Deb's previous oncologist, Roger Lange, who is on leave with his own health problems. Dr. Lange always modeled the proper level of concern. We still worried, but we had confidence that we were worrying about the right things in the right quantities.

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