Thursday, November 06, 2014

putting things in focus

At Andrea Seigel’s encouragement, I signed up for the Gilda Radner BRCA study program at Cedars-Sinai.* Might as well put my freaky genes to use. My first duty, after supplying a vial of blood, was to participate in a focus group about Gilda’s new online family history questionnaire. They instructed us we didn’t need to enter real data. I was a little baffled—you don’t need a genetic mutation to beta-test a website—but whatever. They had me at “light dinner will be provided.”

I plugged in made-up relatives and causes of death for the characters in my YA novel. No one in the novel has cancer, but I decided that Kate has some Ashkenazi Jewish blood on her mom’s side, and I sprinkled the family tree with BRCA. I gave breast cancer to one of Kate’s cousins, but I let her live. I thought that seemed like a healthy story to tell myself.

Gilda Radner and a well dressed, cancer-preventing friend.
My sister calls BRCA “the pretty gene.” She developed this theory—that women prone to breast and ovarian cancer are also hot—after attending a lot of FORCE meetings, which skew young. Who am I to argue?

Not to say that the older, slightly frumpy cancer survivors at Cedars didn’t have the intrinsic beauty of people who’ve seen things and lived to tell about it, but if I were trying to sell issues of BRCA Monthly** I know which group I’d put on the cover.

I got there late—because Cedars is the hardest place to get in the whole city, and I would have been much more inconvenienced by cancer if I’d been treated there—and when I walked in, the public health lady running the group was asking about the usability of the page where you enter your family members.

“Well,” said a woman with a European accent, “for so many relatives I had to enter ‘1944’ as the year of death because of the Holocaust. 1944, 1944, 1944 across the board.”

“And what about before there was a BRCA test?” said a woman with crunchy hair.

Check the box that says “not BRCA-tested,” I said in my head.

She went on: “In my family, everyone always said, ‘The men live long lives, but the women don’t.’ We didn’t know yet, but we knew.

A woman wearing so little makeup it looked, somehow, like she had negative makeup, said, “My mother knew breast cancer ran in her family, so she got mammograms religiously, and then boom, she dies of ovarian cancer.” She threw her hands up.

The group leader said kindly, “Maybe when people list a date of death before the nineties, the system can default to a ‘no test available’ option. Okay, now, what about the part where it plugs all your data into a family tree that you can view?”

The woman next to me said, “Ach, I just look at it and see so many estrangements. So painful.”

The European woman put her hand up. “Trust me, better that they’re alive and estranged than killed by Hitler.”

The group leader asked if we had questions. Crunchy hair woman spoke up. “I’m asking this for my daughter, who’s twenty-three. Have any lives been saved by this testing yet? She just had her prophylactic mastectomy last year, and her thoughts about all this have really changed. She wouldn’t do it again. Not even with me getting cancer twice.”

She shook her head in the way of parents wrestling with their children’s immortality.

I looked around the room and wondered who had fake boobs. It was hard to tell. Which is a good thing, I guess. I noticed I was the only one who’d helped myself to a soda and wondered if they knew something about soda causing cancer that I didn’t.

Mostly, I was finding the evening darkly comic and congratulating myself on my ability to stay focused. Website, people, website!

Then the one black woman in the group (who somehow still seemed very Jewish; maybe she was) started talking about her family tree.

“When I look at it laid out, with the slashes across those who’ve died, I can see the story that my family tree tells. The ones who were educated and had access to good medical care got cancer and lived, and the ones in a lower SES died.”

Yeah, that's what I'm afraid of.
She said, later, that she was studying to be a therapist, so maybe she tweaked my thinking by speaking a language I revere (often in spite of myself). Suddenly I was struck by the eerie magic of it all. A bunch of squares and circles and lines added up to a story; language itself is squares and circles and lines that tell a story.

And although I think Hollywood should make an Armenian Genocide movie and a Khmer Rouge movie before it makes another Holocaust movie, of course it isn’t over. Of course the stories of families separated and annihilated—by war or disease or both—bubble up and tumble out of the systems designed to contain them.

Like a lot of people living at this moment in history, I’m grateful to science and data and statistics, and also overwhelmed by them. At work, we’re always talking about improving data strength, and we need to—but it’s just as important to remember that the robots work for us, not vice versa. The website exists to tell our stories and try to find happier endings; we aren’t here to squeeze ourselves into its boxes.

“So it can be kind of emotional,” said the group leader. “We want this to be a tool for families, to help them have those hard conversations. Do you think we should put some kind of disclaimer—”

She didn’t use the phrase “trigger warning,” but that was what she was getting at. I spoke up against it. Shit sucks because it sucks, and knowing five seconds in advance that it’s going to suck doesn’t really help. I didn’t say it in those exact words.

She continued, “It can be really hard, when one sister is BRCA positive and one isn’t.”

Everyone in the room murmured knowingly.

*Not because I’m so adamant about saving others from my horrible fate, a notion that feels kind of insulting. It’s not that bad being me. Also I’m selfish. Recently I donated money to the National Breast Cancer Coalition because they put a deadline on breast cancer that, if successful, will save me, not women like me. When I want to do something nice in the world, it’s usually completely unrelated to cancer, or it’s much more one-on-one, like being the email buddy of someone newly diagnosed. 

**Not an actual magazine. Or maybe it is.

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