Tag Archives: family

30 May 2009: the Disease

Tired of The Disease’s distasteful interruption to my life. A coping mechanism, I suppose, to view it as a nuisance. Trying to quell the terror of the possibility of this new drug’s being just as ineffective as the last was. Nothing to do but wait–for that date, the next appointment, 17 June. I’m restless, uneasy; I don’t know how to approach the time til then. Yet I don’t have to “approach” it at all, I suppose–it will approach me, overtake me, as swiftly as the rest of it has.

I’m desperate to stay in the warmth of this moment, this memory, and without all the underlying anxiety–a still, hot Saturday with my bare feet in the garden grass–how could something like surgery, like death, be as real as this?

Mostly it’s the wistfulness of wishing this were ‘really’ my home, my life, that I could be cemented into it somehow without the feeling of wandering wraith-like through other people’s lives, the ghostly uncomfortableness knowing none of this belongs to me, nor do I deserve it.

My father has boked a ticket–four days I’ll see him, after an absence of years. His voice on the phone is tinged with desperation and worry. Both of us helpless, not knowing what to say to one another. The strange, enduring, inarticulate & inexplicable love.

I continue to exist with my imagined life of the mind while my real world recedes, its borders drawn in. I imagine expansion, and how wonderful it would be to have the money and ability to travel, as if, should I go far enough–or far enough away from my daily reality–I might be able to escape it.

How disgusting that news of more chemo would be a blessing. God, I am terrified of going into that room in two and a half weeks and being met with that assortment of chalk-eyed people.

I’ve become accustomed–appointments, pill-taking, exhaustion. The latest nurse who prodded my arms after asked, “How was the cannulation?”

“Great,”I said, and meant it. A relief not to have needed multiple needle pricks, to the point at which it was almost a pleasure. I’m at the point of becoming another one of those doe-eyed women in the ward, bored but unfazed by it all, allowing it to happen because there’s not other choice–realizing your own powerlessness, your insignificance in the system.

And I’d be happy with that, too, truly–all of the hospital bullshit–could I be assured this treatment were treating the disease. I wish I could perceive a difference, not constantly feel it, hard as a peach pit, cruel and unmoving.

If there is no just reason for having gotten cancer in the first place, is there any just reason I should recover without pain or even inconvenience? Most of me refutes entirely the possibility of a mastectomy at twenty-four–but what force will prevent it, not having protected me in the first place? (I cringe at my blasphemy–but it isn’t exactly a doubt of God, but rather the realization that any sort of Calvinistic predestination is not under my direction or at my discretion).

I get embittered by old women. Walking to East Hendred this morning I momentarily hated her, a grey-haired stranger in an overcoat, hands clasping Cadbury’s chocoaltes in their purple metallic wrappers. An overcoat! What right had she, I wondered, to live so long? And of course I was immediately ashamed of myself; God knows what she’s been through. What kind of discretion dictates existence? What sort of sick insistent logic might I apply?

Apocolyptic dreams last night, blood-red streets and starvation. Something about a cult concerning Jade Goody. And Anne Frank preparing to hide in an attic.

Waking knowing what the end would be; feeling cheated.

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For Sophie: brief interview with hideous woman

Here’s for the lovely, charming & talented Sophie, who’s asking 5 random questions for her blog.

Though she be but little, she is fierce.

Though this little experiment only partially relates to cancer,  I elected to post my response here rather than clogging up her comments. Continue reading

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Genetic testing in squares, circles, and small unmarked bills

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.

You think?

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.

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