Apologies in advance for the length and workaday newsiness of this post - it's been a full few weeks, with some dramatic ups and downs. January 27, four weeks to the day after my bilateral mastectomy, Pete and I met with my medical oncologist, Dr. Christine Barnett, the woman who will (with a significant support staff) see me through the next and most challenging part of my treatment. Despite the preponderance of good news in my final pathology report, I arrived at our appointment moderately panicked over one ominous phrase, to the effect that the tumor displayed "central necrosis," meaning that it was dead at its center.
This proved a good object lesson in the perils of too much / too little information. I had discovered online a specific tumor subtype which is designated a "centrally necrotizing carcinoma" and has a terrifyingly short prognosis of 12-24 months' survival even when caught early. But Dr. Barnett brought me gently down from the ceiling by reassuring me that this particular carcinoma was not the carcinoma I had (past tense!) and that the necrosis in my own case only told us what we already knew, which was that the tumor was highly aggressive, growing quickly enough to outstrip its blood supply.
Again, the rest of the news was much better than she'd feared at our original consultation: a relatively small (2.1 cm), grade 3 tumor, excised with clean margins and no detectable metastasis to the lymph nodes or beyond. Dr. Barnett was now able to run the final pathology along with my age, weight, BRCA1 and triple-negative status through the magical algorithms supplied by Adjuvant! Online, a nifty, growing database designed to help physicians and patients balance the relative risks and rewards of pursuing adjuvant (non-surgical) therapies in various scenarios.
Because the numbers that these algorithms churn out have such deceptively "objective" authority built into them, and because they necessarily disguise so much in the way of individual variability, they must be taken with a good dose of salt. The late great evolutionary biologist Stephen Jay Gould wrote an astute and enduring analysis of the limits of such statistics, "The Median is not the Message," then went on to outlive his "terminal" diagnosis of mesothelioma by twenty years.
Still, the human desire to know what can't be known remains irresistible for many of us. There was a terrific recent op-ed in the NY Times written by Paul Kalanithi, a neurosurgeon diagnosed with metastatic lung cancer at age 36. He found that his diagnosis totally upended his previously rational attitude toward statistics, and he became as frustrated as his former patients had been with him when his own oncologist weaved and dodged around what was at least temporarily to him the only really important question: "How long do I have left?" It's a question that any of us might choose to obsess over; the temptation just gets exaggerated when we're seriously sick. (Talking with the women in a Kaiser support group a few weeks ago, I found that I'm not alone in developing a comical but real phobia around crossing streets; some of us think it would be "just our luck" to get flattened by a truck.)
For whatever they're abstractly worth, my numbers are much better than Dr. Gould's or Dr. Kalanithi's, let alone my mom's. Without chemo, I stand a 70% chance of living ten years or more; with it, my odds jump to 85%. Without chemo, the nonexistent average patient with my clinical presentation has a 60% chance of a "cure" (no recurrence or metastasis after ten years); with it the odds jump to 80%. However average I feel (or don't), the stats make a persuasive case that I should undergo five months of rollicking heck (i.e. voluntary self-poisoning) despite our hopes that I am already cancer-free.
Pete didn't find these numbers so heartening, but when Bob reminds me that Mom was facing 98% odds against outliving her diagnosis with inflammatory breast cancer by even five years (she made it almost exactly three), I learn something new about her fortitude and her own healthy attitude toward statistics.
I'm learning more every day. Mom took some of the same nasty drugs that have been prescribed for me, and she had many fewer options for "supportive" therapies. I had my first of four planned "A-C" (Adriamycin-Cytoxan) treatments on Monday, and the days since have taken a big toll on my courage and cheer. I seem not to have metabolized the fancy (read: outrageously expensive) modern anti-nausea drugs that they gave me before treatment quickly enough to get "ahead" of the chemo, with the result that I've been clinging to our couch for the last four days as if it were a broken mast in wind-shredded seas, subsisting at moments when my gorge subsides on corn chips and orange jello. Really regretting that third rum-and-coke. (Joke!!)
Twenty years ago, when Mom went through it, this was pretty much as expected. No longer. They called me back into the clinic today for a three-hour glucose drip and sent me home with more drugs and a patch behind my ear. This afternoon I managed to consume and even possibly to digest a chicken sandwich and some waffle fries (unwise, I know, but also somehow exactly right) in a couple of widely spaced stages. This counts today as a major victory, moral and gastrointestinal.
Forza!
Gretchen
Among my significant consolations...