I met with the genetic counselor yesterday–which had me imagining she would sit my DNA down in an upholstered chair, a box of tissues beside it, and try to coax it to talk about its childhood while she sat nodding, notebook on knee.
I mean, just look at this chick’s anemic little gene. She needs to eat some spinach, or something, and punch those carcinogens in the face.
Conjunction junction, what’s yr fun-ction?
Instead she talked about the BRCA mutation and Li-Fraumeni syndrome — which I had never heard of before (I thought she was saying ‘Leefah Ramini syndrome’), and which sucks a big one, holy shit; I kind of wish I didn’t know that things like this exist.
She drew up a chart of my family history, which looks like this, wherein the squares are men, the circles women, the black dots cancer and the X’s deaths. Some from cancer, others from heart disease and suicide and drug overdoses long before cancer could have caught up with them. In short, I don’t know much about my family. I only knew one of my grandparents, and barely; the others didn’t survive out of their forties. My longest-living relatives were/are in their early 60s.
Also, there are mainly squares in there, so as far as breast and ovarian cancer goes, it’s hard to say.
Still, it’s strange to see people reduced to a geometrical map, crossed out with a callous pencil scratch, black dots like small deaths. I sat thinking of Mendel’s pea plants and the genetic traits surveys we did in eighth grade (when I discovered I have one bent thumb and one straight; even then I knew I was a freak), wondering what genetic death wish sat inside me.
Here’s a big surprise: my ‘insurance’ doesn’t cover the three thousand dollar test.
Three. Thousand. Dollars.
But here’s a big surprise, without a trace of sarcasm: the good people of UPMC are picking up the tab with research grant money. To express my gratitude, I let them take five additional vials of blood and peed in a cup for them.
The results–which have a 7% chance of coming back “indeterminate”–come in three weeks. My blood’s being sent out to Utah as we speak. There is only one lab in the country that performs these tests, she told me, because they have a patent on the genes.
A patent on the genes. BRCAnalysis®.
Yeah, I did a Scooby-Doo double when she said that. Arrrrr?
I’m not the only one who consideres this “illegal and unconstitutional,” as the ACLU has taken them to court over it.
According to the lawsuit, Myriad’s “monopolistic control” over its BRCA genes hampers clinical diagnosis, serves as a disincentive for research, and allows the company to charge upwards of $3,000 for testing that many women cannot afford. As a result of these practices, “patients whose tests come back with inconclusive results do not have the option to seek additional testing elsewhere,” the ACLU charges.
No matter what the results are, right now they’re solely for my own information. I’m keeping my left breast and my ovaries, and all the other bits, for the time being. Maybe that seems like I don’t set my life at a pin’s fee. Maybe I don’t, really. All I know is, I need to catch my breath.*
*When I first typed that, I wrote, “I need to catch my breast.”
Dear God. Maybe I need the upholstered chair and tissue box after all.