There comes a point at which accumulated bad luck begins to look like something else altogether. When Mom was diagnosed with melanoma at the beautifully ripe age of thirty-five, the news ripped the floor out from under the reality my family had theretofore inhabited and taught us at a blow how flimsy every personal metaphysics can be.
We didn't dare lay any new boards during the three years of brutal treatment and two years of held breath that Mom needed before her doctors declared her officially in remission, and the structure we built thereafter always had a little of the quality of a dream, or of the impassioned ramblings of a drunk college friend who's just discovered quantum physics: "Dude. Put your hand on this table - or no! better idea - I want you to hit this table as hard as you can. Come on, hit it! Fine, I'll do it. Ahh! Shit, that was too hard. But it feels solid, right? Total illusion, dude. It's mostly space, with maybe a sprinkling of dust. That's it. That's all we are, substancewise. My hand throbbing right now? That's about energy."
Ten years after the melanoma came the inflammatory breast cancer. When I was writing recently about receiving the news of Mom's second diagnosis, I remembered what a friend of mine says about the old expression that some long-neglected activity is "just like riding a bike." She doesn't find this reassuring. "Yeah, I remember riding a bike. It's sweaty and awkward, and it makes your crotch hurt like fuck."
My family has ridden this tandem beast before, and yes, with my own recent diagnosis of a triple-negative carcinoma (more on that designation later), there's a strong feeling for us all of déja fucked. (For maybe the last time ever, I beg pardon for my French.) We're not just indulging a communal sense of self-pity, as it turns out. We may have some scientific justification for our suspicion that we are substantially less favored (genetically speaking) than your average family of bears. Three aggressive cancers diagnosed in two premenopausal women at one degree of separation amount to a strong indication that our shared matter might have come unzipped somewhere. Thus last Monday found me in a basement examining room with a tape measure around my head.
That sounds medieval, or possibly Victorian - back to the days of phrenology! - but the geneticist wanted to see whether I might carry a "PTEN" mutation, one of the few currently known to create a strong vulnerability to untrammeled cell growth, also to big crania. Despite the doctor's discovery that I've got enough brow to make a neanderthal's heart go pitter-pat (58.3 cm!), he doesn't guess this is the problem. The PTEN mutation usually announces its presence in clusters of thyroid cancers and autism. He's more immediately concerned that I may carry the "Angelina Jolie" mutation, a misspelling in the BRCA gene that works (when it works) to correct replication errors in our DNA. The two algorithms currently available to guesstimate risk from patient data (clinical presentation and family history) returned a 10% and a 26% probability that I carry one of the two known forms of the mutation. From our consultation I went directly to see a phlebotomist (can't resist all this juicy language), and two vials of my blood (tucked adorably into a small foam cushion) winged their way that day by express mail to a California lab.
Results are expected just in time for New Year's, and we're waiting to proceed with surgery and the rest until they arrive, because they'll help determine how much of me will remain to me. If the BRCA test is negative, I may lose only the one boob. If it's positive or equivocal, I'll likely undergo a double-mastectomy now and an oophorectomy (removal of my ovaries) later - the risk of a new cancer would otherwise be high.
As you've probably gathered, the two weeks since my diagnosis have not been filled with comforting proviso, qualification, or reprieve. The blows have come in a staggered (and staggering) series:
Tuesday a diagnosis of invasive ductal carcinoma;
Wednesday night the news that the tumor cells display poor differentiation (paradoxically, they are highly diverse) and "brisk mitotic activity" (they are replicating quickly), signaling a high-grade, aggressive growth;
Friday afternoon my new surgical oncologist's judgment that chemo (which I dread far more than surgery) will almost certainly be on my menu of treatment "modalities", also his detection of a suspiciously swollen lymph node near the tumor;
Monday morning the confirmation that the cancer is "triple-negative," meaning that it is not fed by the hormones (estrogen and progesterone) or protein (HER2) that feed most breast cancers and that it is consequently invulnerable to certain of the most effective modern therapies (e.g. Tamoxifen); also Monday a confrontation with the real possibility that I may carry a genetic defect whose detection would have serious potential implications for the future health of my sister, brother, uncle, great-aunt, and all of their offspring;
Thursday the judgment by my new medical oncologist (echoing that of my surgeon) that my tumor may well be larger than suggested by ultrasound and that a PET scan is therefore warranted to check for possible metastasis before we proceed with surgery.
I go in to meet that terrifying prospect this afternoon. Sunday I'll have an MRI of both breasts as a similar precaution.
There is an upside. I am a member of Kaiser Permanente and wildly grateful for this, for reasons I will expand upon in another (effusive) post. But you might have noticed from my litany of bad news how very quickly everyone has mobilized, and how few bureaucratic or scheduling roadblocks I've had to stumble over in pursuit of a more or less definitive diagnosis and a "solid, fluid plan." Beyond this, I am absurdly well-networked, owing to that crappy luck referenced above - Mom's medical oncologist, Dr. Robert Carlson, is now the CEO of the National Comprehensive Cancer Network, and he has most generously offered his informal guidance as well as the names of two Portland oncologists he could recommend highly; one is now on my team and consults with the other. I do not feel that I could be in better or more compassionate hands.
Also, I am learning a lot. My inner biologist manqué has awakened from a long sleep, and my doctors welcome my active participation in the dialogue around my best course of treatment.
And then there is you. If you are reading this, there's a good chance that you're a card-carrying member of my personal League of Extraordinary Gentlepeople. Please forgive me if you have written to me and not yet heard back. You will. But you should know in the meantime that I owe you most of my wherewithal and pretty much all of my courage in these hard days. I'd have a much stronger case against Fortune if she hadn't brought me you.