My husband, Mark, called me at my practice. “I’ve been working on something; I need you to come home now.” He spoke definitively, urgently. “Is it the kids?” I was instinctively anxious. “No, not the kids, just come home now.”
6 p.m., a cool evening, an ordinary day. The life before the fact. And then life afterward, irrevocably and catastrophically changed.
A tense ride home, then the revelation. “I’ve been having difficulty with my leg, my knee, it needed a workup. I went for a brain MRI today.”
I’d noticed a slight limp, thought it was his annoying sports injury flaring up but as a neurologist, he knew it spelled trouble. Big trouble.
I’m haunted by the image of my precious life partner lying in the MRI chamber, already knowing the results as the scan proceeded. My physician husband, the one guiding so many with illness challenges, morphed suddenly from physician to patient in the moment of the radiologist’s diagnosis.
“You have a brain tumor.”
Panic set in, my husband revealed to me later, as he grappled with how to tell me, his soulmate and best friend. The MD in the white coat now in the hands of the white coats. Yes, we helped ill folks all our lives and knew that life can turn on a dime. But now it was us. And boy can life suck. Big-time.
Life as we knew it had come to a screeching halt. “I can’t even imagine what you’re going through,” friends emailed. And so it began. Brain Tumor 101 — educating them, educating us. Trying to tread water within a tidal wave of steroid-fueled sleepless nights and voracious appetite (“roid rage”), getting our will in order before surgery, the fear, the dread, the voices in my head, the terrifying, unrelenting tumor invasion into our no longer “safe haven” home and hearth; mocking us, daring us, laughing a sinister laugh as it entered even the sacred space of the bedchamber …a really mean bastard. I’m not a nurse, not his mother, I’m his wife, his lover, his soulmate. Dammit. Poised for new work projects? Empty nest and ready to fly? New grandson? Irrelevant to the brain cancer demon. The real and surreal.
“Fight the battle” is a common metaphor but somehow my husband copes in his way. “People get sick,” he says with his indomitable stamp of practical wisdom while desperate me clings to Emily Dickinson’s “Hope is a thing with feathers.” Truth, I have learned, can be stranger than fiction. @DanaFarber’s brain tumor guru Patrick Wen, MD had delivered an everything you ever wanted to know about gliomas breakfast seminar at the annual neurology meeting in New Orleans. My husband sat there wondering why he had gotten up so early that day for school when he could have easily played hooky, then found himself captivated. Two weeks later, he entered Wen’s office as his patient. “I learned a lot at your lecture,” he told Wen, both doctors pausing in the gravity (absurdity?) of the moment.
Trust in magnificent doctors of the world helps. A lot. I sat, poised at the abyss, with our devoted adult children for seven hours while @BrighamWomens Dr. Ian Dunn resected that tumor and gave our husband and father a new lease on life.
Mark is now wrapping up six weeks of daily radiation/chemotherapy treatment, and he’s able to ride his bicycle — a gift.
“You can’t be pessimistic on a bike,” he’s always said with a chuckle, and he says it now.
He’s got shoulder pain, trouble walking, frustrating lethargy bouts, and a whole lot of uncertainty about the future, but he’s also got family and friends who adore him, a grandson who’s already eating Cheerios on his own, and a bicycle. Joy within the pain. Paradox of the human condition. Step on the glass and break it under the wedding canopy at a time of bliss. Beauty of the human body and violence of illness. Life’s intolerable incongruities that must be tolerated — no choice. As for me, his devoted life partner of 33 years, it’s a good day, it’s a bad day, I can do this thing, I can’t. And yet. As he takes my hand each night before we drift to sleep, the incessant focus on the corporeal fades gradually, ever so gently, and his soul shimmers in the dark.
I lie on the massage table, a luxury rare before my life ended and a new life emerged. It’s a living in the moment life, grasping each grain of sand through the hour glass and trying not to let it go. I’m sure there cannot possibly be any more tears to shed and yet I cry as the therapist whispers to “let the thoughts come and let them go” and applies the gift of touch to ease the heavy burden. And so I relinquish harsh and unforgiving images of debilitation, of pain and emotional suffering, of being paralyzed with fear of losing the thing I love most in this world. I let such thoughts wash over me and replace them with remembrances of passionate love-making and life-making, the way we were before the storm that will not abate. The way we hope to be, that thing with feathers. Without signposts on an unfamiliar road I did not choose, I arrive at where I must be.
Epilogue: Four years later … against all odds, alive. 13 months chemo, another surgery, two discontinued clinical trials later, alive. And living a life. Always a physician, a teacher. Ambulating with a rolling walker, lethargy still frustrating, yet daily gym workouts. It is his life and our life. Education in cancer survivorship (challenges and opportunities) is gaining traction in light of daunting statistics of cancer patients and their needs — necessary for both healthcare professionals and society at large. The voice of “caregiver survivorship,” as I term it, including the ordeal and new realities of such significant mid-life transformation, is part of this equation and needs to be heard and supported. Hence, “poised at the abyss.”
This story received first prize, inspirational non-fiction, Writers’ Conference at Ocean Park, ME.
Hedy S. Wald is a clinical associate professor of family medicine, Warren Alpert Medical School, Brown University, Providence, RI. She can be reached on Twitter @hedy_wald.
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