I posted previously about the complete misdiagnosis when she first went to the doctor complaining about being out of breath.
Once she got to the hospital, and they were running all the tests they could think of all the time, things proceded much more efficiently. She had scans during her time in December in the Salem Hospital which indicated some kind of tumors in the abdominal cavity.
She wrote my sister, who has a large Christmas party every year, on December 30:
As you probably know, I'm just out of the hospital after a stay of 3 1/2 weeks. Laura kindly bailed me out on Friday. I was hoping against hope that I would feel well enough to come to your concert and party today, but, with the long drive and all, it just wouldn't be prudent. Though I have short bursts of feeling fairly energetic, I seem to need lots of bed rest and naps. I'm sorry to have to miss it.
Unfortunately the future won't be clear sailing for me. Though the underlying cause of the blood clots hasn't been definitely diagnosed yet, most likely I'll be undergoing some type of chemotherapy at Lahey Peabody, where my regular doctor is located. I'm trying to keep a positive attitude, but everything feels very uncertain. So, please think of me when you sing "Let memory keep us all".
We thought of her not only when we sang Let memory keep us all, but also during the singing of Messiah, where she had for several years been the reliable person on the top line.
It must have been shortly after this that I asked her directly if she had a diagnosis yet, and she said, "Yes. Cancer."
I replied, "That's not a diagnosis -- a diagnosis is something like Stage II Pancreatic Cancer, or Stage IV Liver Cancer. Once you have that, then you can go on the internet and look up the possible treatments and the 5-year survival rates."
She said she thought she was scheduled for more tests that might be to produce something like that.
When I asked her later, probably very near the surgery that ended her life as a vocal conversationalist, she said it was a cancer of the reproductive system. We assumed that this meant ovarian, as that would be the scariest kind, and didn't press her.
I assume they had a diagnosis on paper, because there was one course of chemotherapy in early February.
After the surgery on February 15 (see timeline), the doctor reported on there being a lot of cancer, but not on any specific diagnosis. It was only after this, when I became her health care proxy, that I was talking to the doctors directly. The first lengthy conversation with an opportunity to ask questions not related directly to particular treatments was on March 12. The doctor we spoke to (Phyllis, who was the alternate for the health care proxy, and her husband were there, too) definitely told us it was uterine cancer. I have checked with Phyllis, and she remembers it that way, too. He also said that the chemotherapists had agreed that there was no benefit to further chemotherapy. So I didn't press him for a stage or anything, because it didn't seem likely that there was any treatment to consider. His prognosis, which was that she had a small number of months, did turn out to be correct.
Here's something that's different from the TV shows -- when I actually started seeing pieces of paper with the diagnosis on it, it was always ovarian cancer. There was an application the Rehab hospital filled out for MassHealth (her insurance was hitting limits on numbers of days in various kinds of care, after only three months of this), and the admission to the hospice, and finally the death certificate, and they all said ovarian cancer. So I assume the doctor just had it wrong (he was a respiratory specialist, because at that point the major aim of her treatment was to wean her off the ventilator she'd been on since the surgery). I can't imagine why at that point he'd think there was any point in misleading us. Or maybe earlier tests had suggested a different primary site for the cancer, and he hadn't read all the later material.
When I was talking to people immediately after Bonnie died, I said I'd like to write something about the experience, and particularly about the ways in which it wasn't our health care system's finest hour. One of the things the social worker at the hospice suggested was that I might want to get a copy of the medical record to do that with. It probably would have been a good idea, and certainly might have shed some light on this particular conundrum. But I haven't done it.