I am trying to move the language from forever to this moment, in the aiport departure lounge. To loosen up on declaring "You're always" and "You're never" and instead say "Right now you are ..."
I might think I know what's coming, but I have no idea exactly what it will look like and when it might happen. For now, the "what ifs" are not dormant, but also not dominant. Regardless, an illness becomes an uninvited third person in a two-person marriage.
She is a collector: stamps, coins, wine glasses of various shades and shapes, Donald Duck memorabilia. These are her childhood treasures rediscovered from boxes in the attic. Her mother kept them all, not knowing they would serve a purpose someday. On the nightstand is a recent photograph of this radiant woman with chestnut curls.
The person before me now is an empty vessel and nothing more; her limbs limp, her breaths shallow, her eyes closed, her age: fifty-four. The dressings need to be changed around-the-clock to slow the march of decay. The wound tunnels deep, exposing her sacrum as the soaked gauze is removed. Her body is still. Not yet at peace but near the point of defeat.
It sounded like a simple question. Do I still have cancer, or not?
The surgeon got clear margins, and cancer wasn't in the lymph nodes. But my oncologists strongly recommended chemotherapy in case microscopic cancer cells remained, undetectable by any test.
She looked at me with desperation in her eyes. “I just don’t know,” she said.
“What’s wrong? What don’t you know?” I asked. With tears in her eyes and increased urgency in her voice, M insisted, “I just don’t know…I don’t know. I don’t know!” Hands turning white from gripping the armrests of her wheelchair, she slumped over, shut her eyes and shook her head in honest confusion and fear.
My Dad is eighty-nine years old and has a glioblastoma, the same as former Sen. John McCain. He’s doing well despite his condition, and my siblings and I are surrounding him with support. Someone lives with him full-time, and we have a weekly check-in meeting so we’re all apprised of his current condition and contributing to his health. Based in our home town, my brother and sister are his primary care team; I live two-and-a-half hours away.
In February I traveled there to work from his home for a week. First thing Monday, I took him to a progress appointment with his neurology team. Coming in from the outside, I had almost no current knowledge of his condition or medications. Because of that, I was unprepared when the staff person at reception handed me a sheaf of paper on a clipboard to fill out by hand. I asked her whether it was necessary since my Dad’s entire medical record is with this one large health system; she confirmed that it was.
My first three breast biopsies resulted from self-examinations that revealed a lump in my breast. The fourth—and, so far, final biopsy—came after my surgeon felt a mass in my breast during a routine check-up.
Each biopsy brought its own trauma. For biosies one and two, I had to find sitters to care for my two, young children. For biopsies three and four, I had to arrange lesson plans for my substitute teacher. I had to ensure that a family member would be with me during the out-patient procedures, and I had to gear myself up for the IV and anesthetic, both of which scared me more than a Halloween haunted house. After the biopsies, I had to be extra careful about doing exercises or wetting the affected area.
But the profound repercussion of four biopsies was the not knowing: waiting a week for the test results to come back.
This month's More Voices theme is Not Knowing.
Not knowing is an uncomfortable state for health professional and patient alike. And it's striking how often, despite my profession's reverence for knowledge and certainty, I'm unsure--or simply don't have the answers.