Writing about this disease helps me heal.
Living with cancer is an enormous challenge, and most of us are encouraged to try coping skills like yoga, meditation and patient support groups. While I have found several techniques helpful, expressive writing has been surprisingly therapeutic for me. This seemed to come out of nowhere. I had published journal articles, book chapters and scientific papers during my career. I had even written a few simple rhymes for social occasions and business functions, but I had never considered doing any creative writing before cancer struck.
My cancer adventure began early in 2014 when a large tumor was discovered in my head and neck. This explained my recent hearing loss and the jaw pain I had felt for some time. It was an advanced, high-grade cancer, so my wife and I promptly visited surgeons at three Northeastern medical centers and chose a team to work with. Soon this team performed my 20-hour surgery.
Although apparently confined to one area and not evident in other organs, the tumor had invaded the salivary glands, jaw bones and ear canal on the right side. Deeper below the surface, the scans had shown other problems. The tumor was wrapped three-quarters of the way around the artery that supplies blood to the right side of my brain. The mass was also encroaching upon my voice box and destroying the nerve that controls most of the facial muscles on that side. Some of the surgery, such as nerve grafts, sounded like science fiction.
A few hours after surgery, I emerged from my trance in a semi-coherent state. I felt the feeding and breathing tubes in my throat as expected. In fact, I noticed that I had tubes just about everywhere, including the line from a morphine pump. The airway tube prevented me from speaking, so I wrote notes and used pantomime to converse with the hospital nurses, doctors and staff and with the family members and friends who kept watch day and night for two weeks. I gave the thumbs-up sign to everyone I saw. That is how good it felt to be on this side of the surgery.
Before the operation, we discussed the same basic plan with all three groups of doctors — surgery first to remove as much cancer as possible, followed by chemotherapy and then radiation to treat the rest. As my good friend, a general internist, said, “It’s like treating weeds in the yard, which grow faster than everything else. First we mow. Then we apply generous amounts of chemicals and sunshine.”
The hospital we chose offered a new type of radiation treatment using proton beams instead of X-rays. Often this method causes less damage to the surrounding tissues by focusing more precisely on the tumor itself. At that time, there were only twelve proton-beam centers in the United States, and their experience treating head and neck cancer was limited. Thus far, I have less collateral damage in the jaw, teeth, gums and mouth than most radiation patients, and I feel lucky to participate in a clinical study designed to compare radiation outcomes. I completed the treatment mid-year in 2014 and now return every few months for follow-up care, including MRI or PET scans, each as nerve-wracking as the one before. As the primary surgeon reminded us recently, “No news is no news.” So we re-test anything that looks suspicious. We take nothing for granted.
I draw strength from writing about these experiences. I started writing poems two months after the surgery, and now I post them on CURE’s website. Writing poetry seems to help me focus on what has happened, how I cope, but also how I feel about it. Doctors Lewis, Amini and Lannon put it this way in the opening pages of “A General Theory of Love,” “Poetry transpires at the juncture between feeling and understanding — and so does the bulk of emotional life … Because of the brain’s design, emotional life defeats reason much as a poem does. Both retreat from the approach of explication like a mirage on a summer’s day.” The authors then review in depth the psychobiology of brain functions for cognition and emotion and how the brain persistently separates the two.
I have written professionally from the intellectual part of my brain for many years now. Sharing any serious writing from the emotional part for me is quite new. I wonder whether some of my poems spring from the deeper emotional memory that Dr. Lewis and his colleagues describe-- the one housed within the older, more primitive regions of the brain. Somehow the thinking and writing unlock powerful memories of feelings, and these feelings are the hardest part to put into words. Maybe this is why writing seems to help.