Reality

Here is an article in JAMA by Hedy Wald titled "Helping My Husband Live and Die".

We are not well designed - but what do you expect from a relatively short period of trial and error.
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A neurologist who self-diagnosed a glioblastoma at 57 years of age. Aggressive brain cancer. Death sentence. My husband. We were now facing a tragic life narrative turn. Together. “I’m dying,” I found out he told his friend before he told me, his soulmate of 33 years at the time. His voice broke twice within this ordeal of almost 7 years, yes, a practically unheard of survival duration with this demon. Once when he told me the diagnosis and how he could not imagine leaving me. The second time when he said another unimaginable aloud, “I’m shutting down my practice.” Always a physician, he loved helping people, assuaging the suffering. Using diagrams, models, and jargon-free, he made sure patients left his office understanding what was wrong in their bodies and what some of the options were for moving forward. Together.

And how he loved learning! Capturing his euphoria when passing the sleep medicine boards at midcareer in a JAMA piece, many readers wrote to me from all over the country to convey how this resonated; one of them now a dear friend. Reading about himself brought a twinkle to his eye—he loved to joke that he “was published in JAMA.” In the throes of trauma after his diagnosis and before his 7-hour partial resection surgery, I gave that piece to his oncology and neurosurgical teams to help them know the person that is the patient—they expressed gratitude. Isn’t it ironic…narrative medicine used in a most unanticipated way.

We are in the last chapter now. The word journey doesn’t work for me. As a UK cancer patient wrote in a cancer care newsletter I happened upon years ago, “the word journey implies a destination. This cancer thing is more like a magical mystery tour.” Within it, we try to foster and sustain realistic hope as there is a breadth of hopes, hope for the best quality of life, hope for survival beyond the dreadful mean stat imprinted in my brain like a smoldering branding iron, hope for the courage to get through this ordeal that strips away everything except your dignity, if you are so fortunate with the help of loved ones, the medical team, and dedicated aides to maintain that. Always a physician, he is helping others bring him dignity now by encouraging their visits despite his severe debilitation and need for hospice support. It’s not always so easy for others to visit, he knows…his presence, after all, is a Rorschach and can evoke deepest vulnerabilities and fears. It haunts me to know that as a neurologist, he knows intimately what this glioblastoma is doing to his brain, his body, his life. He has met this illness through so many years of training and now it is him.

And yet…as Paul Kalanithi wrote, “Even if I’m dying, but until I actually die, I am still living.” And so we persevered and persevere.

You can’t make this stuff up. Sitting in the examination room at the cancer institute, brain magnetic resonance imaging on the computer screen, watching him consult with the nurse practitioner and neuro-oncologist about the patient, himself. Another image: All wired up in the neurosurgical intensive care unit after his second surgery. The patient, forever a physician, conducting a neurologic examination on himself to the astonishment of the bow-tied Harvard prof and resident “ducklings” rounding that day. “Here’s how it’s done,” he smiled.

Me, the family “caregiver.” Or whatever to call it. Nothing feels quite right. “Care partner” is a phrase out there now. Please just not “informal caregiver;” there’s nothing informal about this full-time occupation, albeit unpaid. And the term caregiver burden with its not-so-subtle implied resentment for a dear one doesn’t work for me either. Be aware and beware—family caregiver morbidity is a real phenomenon.

Diagnosis, steroid crazies, neurosurgeries, 6 weeks’ daily chemotherapy and radiation, 13 months’ chemotherapy, clinical trials with nasty adverse effects (not to mention the 50-page informed consent form that I just did mention), immunotherapy, Avastin infusions for inflammation, tumor bleed. For the patient, a mixed bag of prison sentence, parallel universe, endurance test of epic proportions, gratitude that these options exist, resilience as a must…aka “cancer survivorship.” For the caregiver, life turned upside down, a new occupation, physical and mental health effects (common), gratitude for medical staff that asks “and how are you doing?,” resilience as a must. “Caregiver survivorship” is what I’ve called it. Can we as a society with more than 40 million family caregivers do something to help? Or do we “ostrich” it and bury our head in the sand until it is us?

Likewise, can we as a community of medical education and practice not hide our heads and hearts to each other? I feel as if there should be a movie marquee announcing “Coming soon to a colleague near you.” It’s not just about patients; there is no artificial divide. We have met illness and it is us. What might your colleagues be grappling with at home, within themselves? The words “how can I help?” may be the culture change we’re looking for. Kindness matters. So does opening your head and heart to narrative. For patients and, similarly, for colleagues around us who may be coping with significant stressors personally if not professionally. “Narrative medicine” includes both personal and professional stories—do we have the courage to hear them with intent to help? Leadership seminars asking for 1- or 5-year goals may seem irrelevant, even painful; traditional promotion channels may veer off track, some days may be about treading water. Nuance is prudent. Appreciation for the backstory or hidden CV (as I’ve called it) much appreciated. I’m a professor of this and that and I’m a family cancer caregiver. Both inform my work. To my colleagues, I hope I have been and continue to be sensitive to your travails and congratulate you on your successes.

Through these trying years, with a full heart and heartbreak, I’ve helped my husband navigate an unanticipated life of disability and capture some quality of life within Herculean efforts to maximize quantity of life. And with his unwavering support, I’ve continued to teach and even travel to present on promoting resilience, now more relevant than I could have ever imagined. I’ve helped him live, he’s helped me live, and now I am helping him die.