In the beginning there was an acronym: LCIS, lobular carcinoma in situ. That would have been enough. Then a more potent acronym suddenly thrust itself into view, complicating matters, adding great weight (and some confusion) to our newly acquired vernacular: ILC, invasive lobular carcinoma. The messenger had arrived on her doorstep with shocking news, throwing her for a loop and filling her – and, by extension, us all – with a profound, but silenced, sense of dread. A large binder was presented to her (with a plastic insert thoughtfully added for business cards), as if to say: oh, dear, this is the real thing. That was surely more than enough.
That was also when the flurry of activity began in earnest; when the research geared up a notch; articles, study abstracts, clinical trial results, oncologists’ bios, all flitting through the email-sphere faster than you could say the C-word. Copies of the pathology report made their way onto the desks of surgeons on both sides of the border, specialists contacted in different hospitals, appointments made in medical offices. Second opinions sprouted more; third, fourth and fifth. (In the end, I went with my ‘second opinion’ doc, one posting read.) By now, perhaps a dozen sets of eyes have scoured the results and offered up their preferred opinion.
She, they, we have shuttled here and there. With imaging results, reports, lists of questions, and journals for note-taking, we approached each meeting hoping that perhaps the very next consult would give us a more definitive answer – or at least more time. Diagnosis and prognosis could have been much worse, so in that respect at least, we have counted blessings.
One center dedicated solely to breast cancer care greeted us with all things pink: a shocking pink t-shirt worn by the receptionist, post-it pads, binders, clips and piles of paper all in pink. Brochures, ribbons and knickknacks, all shouting pink. Two quilts hung across from each other; one titled “In the Pink,” the other “My Right Breast.”
Drawings, jewelry, crystals, greetings cards and phone calls become fixtures in the household routine. As do family meetings, discussions, evening walks outdoors. And the books – on breast cancer, healing and coping – have been appearing, bearing straight-talking titles such as Dr. Susan Love’s Breast Book, Cancer is a Bitch and When Things Fall Apart. I felt her husband might benefit from reading about the illness from a male-centered perspective, so I picked up a copy of Stand by Her.
Still, the sadness that has settled on her is palpable. I guess this means that I’m now a member of the pink ribbon circle, she confided early on. I’m disappointed in my breasts, she said another time, her tears soft but audible over the phone, I breastfed them both for a long time, so certain it would protect me from this.
Thankfully, the timing was such that other events occasionally have taken precedence, diverting attention – albeit temporarily – from pressing matters of health and wellbeing: An end-of-year boy scouts ceremony, karate belt test, dance recitals, graduation and house party were all planned for the kids. Though they were all good excuses for celebration and joy, the looming presence of Cx was felt as if it were an uninvited guest, cowering in a corner at each gathering.
And yet, here we still are, half-living in a bubble that we would all wish to pierce and awaken from as if it were a bad dream; instead, like a cell gone haywire, that bubble grows. Our amassed knowledge of the dis-ease has multiplied exponentially. We have learned the meaning of critical sentinel node biopsy, clear margins and multifocal. By now the acronyms in our vocabulary have expanded to include terms such as CYP2D6, ER+ PR + Her2-, BrCa and DCIS. We are all getting used to hearing the oft-repeated phrase, Stage 1, Grade 2. And the standard pairing of radiation and Tamoxifen now slides off our tongues as easily and simply as if we were asking for salt and pepper.
Thankfully, in the midst of it all, there have also been waves and days of (black) humor, laughter and lightness. Because, while she has been nothing short of courageous in the face of this turbulence – it is a saving grace to see the burden lift long enough for her to breathe in the smells of arugula and basil, enjoy late-afternoon sightings of fireflies and bunnies and find her family’s playful antics a reflection of their abiding love and acceptance.