The author is in the hospital. The photo is courtesy of Evan Noch.
The near-familiarity of this experience was what I heard when I heard the sci-fi clangs. I listen to my patients' experiences in the hospital, from the loud noises to the claustrophobic atmosphere, and see their anxiety that precedes the results.
This time around, it felt different because of the proximity to my own neurological awareness and because of the fact that I would be in my own hospital.
I was pleasantly surprised when my otolaryngologist told me that I had an acoustic neuroma. Since my aunt, grandmother, and great-aunt all died of brain tumors, I anticipated that one day I would hear those words. All I could think about was that if it wasn't a brain cancer, I would accept any other diagnosis.
The whiteboard was filled with pro/con list making after the diagnosis. I distilled my experience with other patients and decided to have surgery at the beginning. How would I cope from brain tumor surgery and how would I set a good example for my patients by maintaining resilience through the process was opened by the chasm in my physician- patient body.
On a crisp October day, I entered the hospital, ready for the 7.5 hour surgery, knowing that I would lose hearing on my right side, but most of all, eager to have the tumor out. I was relieved when I discovered my facial function was mostly intact. I vomited four times after I received my first steroid dose. I have ordered dexamethasone for hundreds of patients and have never heard of anyone vomiting.
Those weren't the last of the post-op problems. Complex hospitalized patients need to go on all the rides, according to one of my attendings. When I was cast in the role of the patient in a hospital drama, I was the one standing at the bedside, not the other way around. The journey awakened my inner physician and allowed me to diagnose each new setback and formulate a plan of action.
I realized how weak I was after I was hospitalized for 12 days and lost 11 pounds. Patients wanted to see the physical therapist more than twice a week, and I had to listen to them. I want to be able to eat in bed. For the first time in my career as a doctor, I realized that patients measure their care in predictable ways.
I chose the next days meals each afternoon, timed my teams' morning rounds within a 5 minute window, and squinted up at the clock as I was awoken by the nurse to take my vital signs. As I sat across from my patients in the clinic, I processed my experience in a way that made sense to them.
On a bright November day, I was discharged from the hospital and was hoping for a ride home, but I had to return to my lab and clinic. In the days and weeks after my surgery, I didn't think much of it. I sit across from my patients as they tell me all they want to do is go home, while I help them cope with their cancer.
I began to see the hospital environment from the point of view of a physician-patient, zooming out from the day-to-day bustle on the wards.
The author lives in Vermont. The photo is courtesy of Evan Noch.
A patient was afraid of brain tumor surgery because she was afraid of what she would feel after the operation. I said that I had gone through the same surgery and that I was in front of you. I felt a sense of relief from my patient as though our relationship had become a family one.
I wondered if I should share details of my journey or not. My diagnosis of a benign brain tumor may pale in comparison to the other types of brain tumors that my patients have. My surgical cure may be at odds with their experience and may be counter productive. I am careful not to shift the focus of my patient encounters to me: Office visits are meant to address their concerns, not to facilitate my own recovery.
Patients' stories can be quite triggering even when not sharing their own experiences. A patient recently told me that she fainted in the tub after showering for the first time. The heat and water were too much for her. When I stumbled into the shower awkwardly for the first time after surgery, I felt like a clumsy skeleton. As if the water was cleaning off the gunk from the hospital, the sensation felt allodynic.
Sharing my story is not without risks, such as over-sharing, of my own vulnerabilities, and even of triggering encounters, for myself and my patients. I wondered if these triggering experiences would hurt my relationship with my patients. I know that shielding myself from my patients backfires, since I have been on the receiving end of many difficult diagnoses, including a brain tumor. My recovery engine was fueled by personal stories of my doctors and friends who lived with deafness.
I rely on cues from my patients as a guide when sharing my experience as a patient in neuro-oncology, even though I don't have a precise formula for when to do so. Some patients don't understand what a surgical scar looks like in the weeks after surgery. Some patients wonder what it's like to lose hearing after an operation. I find that my experience can help them prepare for surgery, taking the edge off of the anxiety that comes with a major surgery. It is possible to learn how to return to life after brain tumors are removed. I talk about the issues I have had with deafness, how to regain balance, and how to eat in the hospital. Physical therapy had a wonderful benefit on my return to work.
I've shared my experience with about half a dozen patients who were scared and worried about brain tumors surgery or their recovery. To illuminate one possible path of recovery, I have used my own experience. Sharing has helped my relationship with my patients more than it has hurt it.
We all bring our personal lives to our patients even if we don't admit it. Sharing can humanize us in the eyes of our patients and that is what I find most useful. Patients look to us not just for our professional opinion but also for our personal opinion on the direction of care. Sharing direct medical experience as a patient or loved one can ring true for them, as well as comforting our patients during isolating periods of decision making.
This process has taught me that my experiences can be relevant to my patients and that sharing them is a powerful way to connect with them. Having been strapped into the metal mask atop the gurney before my surgery and waking up with a C-shaped line of sutures hidden behind my ear, I now consider this the most useful tool that I can bring to my clinic.
Dr. Evan Noch is an assistant professor at the Division of Neuroscience at the New York Presbyterian Hospital. Dr. Noch graduated from Temple University with both his M.D. and Ph.D. He conducts research on metabolism in brain tumors and leads a company that develops mobile technologies for stroke detection.
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The article was first published on HuffPost.
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