Dr. Cynthia

My nightly perambulations plus Tylenol 3s plus a very satisfying session with the relaxation tape have failed to relieve the pain enough to lie flat, so I'll use this pre-dawn time to catch up here. This week I am especially frustrated with my doctors. I saw my oncologist and got the all-too-frequent "Why are you here?"; she had forgotten that she'd asked me to come back in a month, and had not reviewed the pathology of my tumours as promised. My bone biopsy had still not been booked, and I can't see the radiation doctor until that happens. At every turn, I feel as though nothing occurs without persistent reminders and phone calls from me to doctors, secretaries, technicians, etc., and various treatments and options are only chosen because I saw something on the Internet and mentioned it to the doc. That's an exaggeration, I know; I have found in the past, when I get a chance to read doctor's notes, that they're not as clueless as they sometimes sound and have heard more of what I've told them than I thought they did, but I still feel as though I am my own doctor a lot of the time. This is also true with my GP, whom I never even bother going to anymore.

Dr. Lee phoned the pathologist while I was in the office to clear up the discrepancy (which as far as I could tell only I had noticed) between the report that said my tumour was 30 percent estrogen-receptor positive (the initial needle biopsy) and the one that said it was less than 10 percent ER-positive (the actual surgery). It turned out that the surgery report only measured the pathology of a tiny tumour that was removed from my breast; the big guy in my armpit was not measured at all! From what I gathered, they can go back and do it. In the meantime, Dr. Lee said even at 10 percent it is worth taking some hormone therapy after all, and she suggested I take Letrazole because I hadn't reacted well to Arimidex. "Why wouldn't you prescribe Tamoxifen," I asked, "since it doesn't degrade the bones and I tolerated it so well before?"

"OK, we'll try Tamoxifen," she said. Interestingly, yesterday's Globe ran a story about a test available in the U.S. that can tell you if you're among a small percentage of women for whom Tamoxifen doesn't work. Doctors in Canada are divided on whether it's accurate. One was quoted as saying that if you feel great on Tamoxifen -- in other words, you have no side effects, which was true for me during the two years I took it -- it probably isn't working. I wonder if I should pay the $500 for the test. Something else to tell my doctor about!

In the meantime, yesterday I found out I'm booked for the bone biopsy on Wednesday the 21st. Oh, joy, another 7 a.m. call in day surgery. I just want to get on with this so I can find out if more radiation is in the cards, and keep my fingers crossed that it will take away this pain.

My mood has been pretty good, though; I like this brisk fall weather, and during the day I feel OK if I can walk around a lot. I am enjoying my Healing Journey workshop at Wellspring; it's good to get out of the house and be with other people in the same boat (yesterday I quietly passed my plastic hand fan to a poor sweating woman on the couch next to me), and I like the meditation exercises and journaling.

Pollyanna moments:

• We had a yummy Thanksgiving dinner at my sister's, and I was the recipient of the 28-pound turkey carcass (well, the turkey was 28 pounds, not the post-meal carcass, but it was still a bugger to cart on the Greyhound bus, and I was hard-pressed to fit even a fraction of it into a soup pot, but I got a very nice broth out of it as well as enough meat for sandwiches all week).
• I have decided that, illness or no, I should proceed with a goal that matters a lot to me: I agreed to run a memoir-writing group for seniors as a volunteer at my local community centre, Applegrove. Whether we'll get any participants out is another story: if you know of any east-ender elders who would like to jot down some stories as a legacy for their descendants, point them in my direction! It would take place from 1 to 3 on Monday afternoons starting November 2, if it happens at all. I think this would be something I can handle; I'm tired of saying, "When I'm well, I'd like to do this." I may never be well again. But until I'm so unwell I can't leave the house, I want to do something useful.