Tuesday, December 27, 2011


The day after surgery, I felt perfectly fine when I woke up, but about noon I suddenly felt woozy, almost dizzy, headachy and fatigued. I got in bed feeling very chilled, but later felt quite warm and saw my face was all red. I assume this was the 2000 rads kicking in. (Lisa reported that David said no wonder I didn’t feel well—I’d just been “Fukushima’d.”) But by late afternoon, I felt better, just kind of strange and mildly headachy, and there hasn’t been another day with the more noticeable effects.

I’ve been drinking tons o’ water and eating plenty o’ veggies, and I had an appointment a couple of days after the lumpectomy with someone who specializes in lymph-moving massage, and a visit a couple of days later with another person who does a similar thing. Tom and I took a restorative walk in Golden Gate Park one afternoon.

I talked to Dr. P. on the phone a couple of days after the surgery and he told me that it went fine, that there was no sign of invasive cancer, and that he didn’t know the number of millimeters of clean (cancer-free) margin off the top of his head, but that it was plenty for the best score in that area of the Van Nuys recurrence prediction scale.

The X-ray after the initial excision did show that more tissue needed to be removed, so he did that on the spot. I asked if it is correct to say the tissue was examined for signs of invasive cells inside or outside the duct, and he explained that there can’t be invasive cells within the duct: if it’s inside the duct, it’s in situ, and if it’s outside the duct, it’s invasive, so they were looking for cells outside the duct and didn’t see any. However, the cells are the same in either case. It’s not a matter of different kinds of cells, but of location. Finally, he said it will be four to six months before full healing is done.

Christmas with Tom’s family in Sacramento was wonderful, as always, if devoid of hugs this year. The incision site doesn’t hurt at all if left to its own devices, but if it gets bumped or compressed—so far, I’m the only one who’s done this, when blowing my nose—the pain is excruciating, so it was a handshakes-only holiday, which I think was a bit more professional.

We had a spectacular dinner on Christmas Eve and opened gifts later that evening. Tom and I spent the night at Ann and Mac’s, and on Christmas Day, it was back to Paul and Eva’s to see what Santa had put in our stockings.

Yesterday I went to Rainbow and was utterly exhausted by the time I left the store, which was before starting a long day of cooking. I know someone who had a lumpectomy nearly a year ago followed by six weeks of external radiation, and she very recently said she still feels tired, but even if I’m tired for a year, I suppose I’ll have forgotten all about it 50 or so years from now.

A woman writing on breastcancer.org said she felt very fatigued for three months after she had intraoperative radiation. This woman had IORT because she felt strongly that whole-breast radiation was too much treatment, but she’s going ahead with tamoxifen (though she says her medical oncologist is only “mildly” in favor of it), so I’m wondering if I’m making a mistake in not wanting to take tamoxifen.

I’m also still brooding over recurrence risk numbers and am paranoid I’ll be one of the people who persistently grows cancer back. When there is a recurrence after an initial diagnosis of DCIS, half the time it’s DCIS again and half the time it’s invasive cancer, though then you might have a mastectomy and radiation and/or chemotherapy and live on, sanguine good humor intact.

I’m continuing to visit the forums at breastcancer.org frequently, which has been extremely helpful. There’s a section for various diagnoses, starting with ductal carcinoma in situ (DCIS, Stage 0 breast cancer, what I have), and moving on through the various stages to Stage 4, metastatic cancer.

 The last forum in this section is for people who have suspended treatment and are deciding on palliative care or making hospice arrangements, some leaving behind young children. Visiting here plunges me into a state of gloom and anxiety—there are people posting whose initial diagnosis was DCIS and who now are dying. It’s heartbreaking to read about women making ready to leave everything and everyone they love, and it’s also staggering how much bravery, acceptance and clarity shine through their words.

In just about the worst circumstances you can imagine, the focus is not so much on dying as on making the most of the days that remain.

David and Lisa, in a pretty naked grab for Friends of the Year, have been wonderful—calling before and after important events, spending lots of time on the phone with me. Carol Joy, who sent gorgeous pink carnations after the hysterectomy, sent another spectacular flower arrangement, and others have offered to bring over food or have sent bolstering notes. My sister offered to help as needed, and my mother, as always, has borne the brunt when it comes to hearing every detail. Such a kind mother and sister and such kind friends!
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