Tonsil cancer survivor travels from New York to Houston for treatment
My personal goal has always been to run the New York City Marathon. As New York residents, my family and I have volunteered at the event for 22 years. In 2019, I decided to start training by walking and working up to running long distances.
A month after the race, I started to notice painful swallowing, then a dull pain in my right ear. Each day, the discomfort got worse. I knew something was wrong and called my primary care doctor and an ENT.
As soon as the ENT put the scope in my throat, he noticed my tonsils were enlarged. A CT scan revealed a mass. After a biopsy in January 2020, I was diagnosed with tonsil cancer.
Driving from New York to Houston for tonsil cancer treatment
After struggling to get into a nearby hospital because of the COVID-19 pandemic, my wife, Susan, urged me to seek an appointment at MD Anderson because it was ranked No. 1 in the nation in cancer care. Even though we didn’t have an appointment yet, my wife and three adult children packed up everything we could fit in two cars, and we started our journey to Houston. While my son and I drove, my wife and daughters made calls to MD Anderson to secure an appointment. Once we arrived in Houston, we rented a house and quarantined for 14 days. Within four days, I had an appointment at MD Anderson and met my surgeon Stephen Lai, M.D., Ph.D., medical oncologist Charles Lu, M.D., and radiation oncologist Brandon Gunn, M.D.
My care team laid out my tonsil cancer treatment plan: 33 daily proton therapy treatments along with six weeks of chemotherapy. Dr. Lai told me surgery was not recommended based on the extent of the tumor and its location. The type of chemotherapy I received enhanced the effectiveness of radiation and did not cause hair loss.
Because the tumor was in a delicate place near the roof of my mouth, Dr. Gunn used a type of proton therapy called pencil beam scanning. It uses a tumor’s location, shape and size to create a customized pattern of protons to precisely treat the tumor while avoiding nearby healthy tissue.
Managing proton therapy side effects
Since I’m retired, I made treatment my full-time job. I had appointments each day. Maintaining proper nutrition during radiation was a big concern I had difficulty swallowing. So, I made it my goal to rest, relax and stay motivated to eat. I cooked every day and sat outside to catch up with family and friends on the phone.
My care team prescribed medicine in case the chemotherapy caused nausea. But I had a mild dose of chemotherapy, so I did not have nausea.
After a few weeks of proton therapy, I lost my sense of taste and had difficulty swallowing. I’ve always loved food and cooking for my family. Even when I couldn’t taste anything, I still had cravings. I challenged myself to look for new recipes online, and when I couldn't sleep at night, I cooked and woke my family up to taste it. This became a fun way for us to bond.
I avoided foods that caused my mouth to burn. My go-to meals were oatmeal, egg drop soup with chicken broth or pasta with butter and cheese.
I developed tinnitus where the radiation entered through the right side of my jawbone. My mindset was that the side effects were just little inconveniences to find a way around. I did not dwell on them because I have a lot to be thankful for and a lot more living to do.
After one week, Dr. Gunn saw the tumor shrink. For the next five weeks, dosimetrists continued to modify the beam as the tumor shrunk. It felt great to know the treatment was working.
Staying inspired throughout tonsil cancer treatment
When you get a cancer diagnosis, it’s normal to expect the worst. Thankfully, the staff at MD Anderson’s Proton Therapy Center cheered me on. They took time to get to know me. My radiation therapists paid attention to how I was feeling before each treatment. Every day I ran down the big spiral staircase and, after treatment, I ran back up. It was my way of thinking of my tonsil cancer treatment as a marathon I was training for.
I reminded myself this was temporary – it would get better. I leaned on my faith in God and encouragement from Dr. Gunn and the radiation therapists.
Reaching the finish line of tonsil cancer treatment
My last proton therapy treatment was June 5, 2020. My sense of taste has improved, and I’ve gained 40 pounds back since treatment.
I come to MD Anderson for follow-up appointments every four months. During our last appointment road trip, we decided to spin a bottle on a map and decide if the destination was somewhere we wanted to go. We then adapted our route to Houston. In February 2022, we drove 9,000 miles, and stayed on the road for a month, enjoying different cities along the way.
I recently signed up to speak with other patients through myCancerConnection, MD Anderson’s one-on-one cancer support community. I look forward to encouraging others to reach their cancer treatment finish line.