In 2011, when my sister wrote  Beast Cthulhu and bone metastases,  about her breast cancer being a treatable chronic illness, I was so sad…..

….because it was not true, even though I wished it was.

The perils of being the doctor sister.

It was clear that her cancer was progressing. Yes, she could request to continue treatment. Yes, they would keep treating her….

….but it wasn’t working.

The hematologist-oncologist chooses the best treatment first. Chris Grundoon was 41 and very strong and healthy so they hit the cancer as hard as they possibly could. Chemotherapy, mastectomy, radiation therapy, a second degree burn on her chest wall. It was stage IIIB to start with. Cancer is staged 0 to IV. Zero is “carcinoma in situ”, cancerous cells that have not even invaded their neighbors. Stage I is very local. Stage IV is distant metastases. Stage IIIB of ductal breast carcinoma means multiple lymph nodes, but not the ones above the collarbone, and no cancer in bone, brain, lungs or liver.

She had two years in remission.

The cancer recurred with a metastasis above the collarbone. The cancer had morphed as well, as it often does. Most, most, most of the cells were killed… but those that survived… were different. Now she was estrogen receptor negative, progesterone receptor negative and her2 negative. All genetic markers which help decide which treatment is best and how to target the cells. More and more are being found.

Our mother died of ovarian cancer. I went with her to her oncologist only once. My mother said that her CA 125 was rising, and of course she could do more treatment if she needed to. The doctor said something positive. I followed her out of the room. Once the door was shut I said, “My mother is talking about another clinical trial! She can’t do that, can she?”

“No,” said the oncologist, “Of course not. She is too advanced. But we will treat her for as long as she wants.”

Whether it works or not. Because she wants to be treated. In spite of diminishing returns.

My sister passed her five years from the day treatment ended. So technically she is in the five year survival group even though then she died. When she was diagnosed, the five year survival for her type of breast cancer and stage was about 5%. It had improved to 17% by 2011.

Her oncologist told her “I am referring you to hospice.” in the spring of 2012. She went to San Francisco to talk to another group about a clinical trial. But it was too far and too late. She refused hospice until about two weeks before she died. Fight to the end, she was willing to fight even when the oncologist said, “You are dying.” She had promised her daughter and promised her husband.

I saw her three times in the last two months before she died. She seemed angry to me on the last visit, glittering, knife edged. I tried to sing a lullaby, but she wanted something else. “Samuel Hall?” I guessed. She smiled and I sang it. My name is Samuel Hall and I hate you one and all. To the gallows I must go, with my friends all down below. Hope to see you all in hell, hope to hell you sizzle well, damn your eyes, damn your eyes. Then she trusted me to be present whether she was angry or sad or confused or once even happy, glowing, transported, transformed….

Some people do not go gentle. That is their right. It is their death, not ours, not mine.