When I heard the sounds of science fiction and the bellows of an MRI scanner, all I had in mind was a close affinity for the experience. As a neuro-oncologist, I often listened to my patients’ experiences with MRI machines, from loud noises to claustrophobic abyss, and saw their anxiety preceded the results.
Although I had had an MRI before, this time I felt different, probably because of the closeness of my nervous consciousness and because of the intimacy of having this scan in my hospital facility.
When the phone rang the next day and my ENT doctor said the words, “You have an acoustic neuroma,” I suddenly sighed. Since my aunt, grandmother, and aunt had all died of what was likely a glioblastoma, I cautiously anticipated the most terrifying malignant brain tumor and expected that I would one day hear these fateful words. In fact, all I could think of was that as long as it wasn’t a glioblastoma, I would easily accept any other diagnosis.
After the diagnosis, the whiteboard in my mind was perturbed with the preparation of the list of pros/cons. I distilled my experiences with other patients and eventually decided to pursue surgery initially. At the same time, the chasm in my doctor and patient body opened – how would I handle brain tumor surgery and would I set a good example for my patients by remaining flexible during the process?
On a crisp October day, I walked into the hospital, ready for the 7.5-hour surgery, knowing I’d be losing my right-sided hearing, and wary about maintaining my facial function, but most of all, eager to clear the tumor. When I woke up and discovered that my facial function had been largely preserved, I was relieved: I have always appreciated my smile. I heard the typical buzzing sound after surgery and vomited four times immediately after receiving my first intravenous steroid dose. Of the hundreds of patients I have ordered dexamethasone for, I have never heard of anyone vomiting, despite this seemingly known single effect.
Unfortunately, those were not the last postoperative complications. The salty cerebrospinal fluid started dripping from my nose and down my throat, and I spent 12 days in the hospital treating this problem. One of my attendees during a neurology residency often said that complex patients in the hospital need to go on “all trips”. The same could be said of me, as the patient in a hospital drama where I was usually the one standing next to the bed. Although these days in bed were by no means fun, the trip awakened my internist, allowing me to diagnose each new setback and formulate a plan of action.
After being hospitalized for 12 days and losing 11 pounds during that time, I realized just how weak one can be after spending so much time in bed — and with so many days of nausea and lack of sleep. Flashbacks to my patients’ requests to see a physical therapist have surrounded me more than twice a week. I too have been craving a better eating position in bed. For the first time in my medical career, I truly understood that patients often measure their care not in billable actions and medical decision making but in predictable simplicity.
I chose the following days’ meals each afternoon, timed my team’s morning runs in a 5-minute window, and checked the clock every evening at 11 p.m. just as I was awakened by the nurse to take my evening vital signs. More so, I processed my experience in the context of my patients, an “ah ha” bell ringing daily with the newly admitted facts they told me while I sat opposite them in the clinic.
I walked out of the hospital on a sunny November day, hoping to go home with my head wrapped precariously on the back seat. After settling into my new routine, all my mind was occupied with was going back to my lab and clinic, getting my diagnosis out of the spotlight and reducing this entire trip to background noise. What I didn’t expect in the days and weeks after surgery was how much this experience affected my work. As a beginner, I routinely pass on brain tumor diagnoses or sit in front of my patients because they tell me all they want to do is go home, while mentally helping them come to terms with the cancer.
Gradually, I began to peek into the hospital environment from the patient doctor’s point of view, minimizing the hustle and bustle of daily life in the wards and amplifying the changes that had taken place on this journey into my professional encounters.
Recently, a patient had been afraid to undergo surgery for brain tumors, afraid of what she would feel next and afraid of surgery site pain. Without wasting a moment, she exclaimed, “I had the same surgery, and here I am in front of you, and I’m fine.” I was relieved by my patient, as if our therapeutic alliance had turned into a family affair.
I started thinking about when to share the details of my trip – and thinking about not sharing them. For example, I realize that my prognosis for a benign brain tumor may pale in comparison to the intractable malignant tumors that grow inside the brains of many of my patients. Even worse, my surgical treatment may conflict with their experiences and may even be counterproductive in the empathic therapeutic relationship. Likewise, I am careful not to shift the focus of my patient’s encounters to me: office visits are intended to address their concerns, not force them to take on the role of provider to facilitate my recovery.
Even when I’m not sharing my own experience, I’ve found patient stories can be very exciting. A patient recently told me that after she came home from brain tumor surgery, she fainted in the bathtub after her first shower. She said the heat and flowing water were too much for her. When I heard her story, I felt an immediate echo. When I stumbled awkwardly into the shower for the first time after surgery, holding a curtain rod to step in and a towel rod to steady myself amid the rush of warm water over my body, I felt like a clumsy skeleton. It felt somewhat energized but also refreshing, as if the water had been cleaning up nearly two weeks of hospital scum.
Through these experiences, I’ve learned that sharing my story is not without risks – over-sharing, showing my weaknesses, and even provoking confrontations, for myself and my patients. I even wondered if these exciting experiences would distance me from my patients, and force me to bury my medical record. But having been on the receiving end of a difficult diagnosis, from hitting a fingertip in an MRI machine, and taking a tumor out of my brain, I know that protecting myself from my patients is counterproductive, preventing the therapeutic “on” switch from igniting. The personal stories of my doctors and friends with unilateral deafness or hearing about strategies for coping with dizziness have been the fuel in the recovery drive.
Although I do not have an exact algorithm for deciding when to share my own experience as a neuro-oncology patient, I generally rely on signals from my patients as a guide. Some patients may be afraid of having surgery, not understanding what the surgical scar might feel or look like in the weeks after surgery. Some patients may be concerned about postoperative pain or wonder what a one-sided hearing loss feels like. In these cases, I find that my experience can help them prepare for surgery, removing the worry of major surgery. I stress that undergoing a brain tumor resection, recovering from surgery, and learning how to come back to life is difficult – but possible. I talk about the problems I’ve had with unilateral deafness, or how to restore balance, or make sure you eat as well as possible in the hospital. I stress physiotherapy for its amazing benefits when I get back to work and life.
So far, I’ve shared my experience with about half a dozen patients who have been dreaded and apprehensive about brain tumor surgery or their recovery after surgery. I have used my own experience not to convince patients of my clinical recommendations, but to shed light on a potential path to recovery. In all of these situations, I feel this sharing helped – rather than hurt – the relationship with my patients.
While not all doctors are committed to their patients’ journeys, we all bring our own personal lives to our patients—whether we admit it or not. What I find most helpful when looking through the lens of the past year is that thoughtful engagement can make us human in the eyes of our patients. Our patients not only look to us for our professional opinions but often our personal opinion in the right direction of care. Sharing first-hand medical experience as a patient or loved one can feel real to them, validating these views and comforting our patients during periods of isolation for decision-making.
As a clinician, this process has taught me that our experiences can be relevant to our patients and that appropriate engagement is a powerful way to better communicate with our patients. Having been attached to the metal mask on top of my pre-operative MRI holder and woken up by a line of C-shaped sutures hidden behind my ear after surgery, I now consider this experiment perhaps the most useful tool I can bring into my clinic.
Dr. Evan Notch is Assistant Professor of Neurology in the Division of Neuro-Oncology at Weill Cornell Medicine, New York, Presbyterian Hospital. Dr. Nosh holds a master’s degree and a Ph.D. He received degrees from Temple University before completing his residency in neurology at Weill Cornell Medicine and a fellowship in neuro-oncology at Memorial Sloan Kettering Cancer Center. In addition to his clinical endeavours, he conducts basic and transformative research on metabolism in malignant brain tumors and leads a company developing mobile technologies for clinical stroke detection.
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