One single, swollen lymph node on Jeff’s neck was the start of his unexpected cancer journey.
Ironically, Jeff is immersed in cancer care and treatment daily as he works in communications for the American Society for Radiation Oncology.
Jeff’s visit with a primary care doctor about his swollen lymph quickly escalated into a more serious discussion. The doctor immediately thought it was a sign of something more. A needle biopsy and ultrasound found that the mass was a benign cyst. Relief!
If Jeff wanted to get the mass removed, he would need to meet with a surgeon. A few weeks later, he met with a surgeon. Within minutes of the exam, the surgeon shared, I don’t think it’s just a benign cyst. I think you have tonsil cancer.
A biopsy of his tonsil confirmed the suspicion. The surgeon also checked Jeff’s lymph nodes, so a neck dissection surgery was needed.
I had options for my tonsil cancer—surgical removal and radiation or a slightly longer course of just radiation. I wanted the cancer cut out as quickly as possible, and since I had to have surgery to remove some lymph nodes, I opted for the surgery/radiation combo, explained Jeff.
Post-surgery pathology confirmed the presence of cancer in his lymph nodes, so six weeks of concurrent chemotherapy were added to his 33 rounds of radiation therapy.
I won’t lie; adding chemotherapy and all its side effects to the mix was tough for me to swallow. I had about six weeks to recover from the surgeries before I started my radiation and chemo, so I focused on gaining weight as I was told I would lose weight during treatment due to eating and swallowing challenges, added Jeff.
Jeff underwent radiation every day for 33 days and, during that period, had a four-hour chemotherapy session each Wednesday. It was a lot of appointments for him to manage.
I’m not claustrophobic, but the immobilization mask is tight. Getting radiation therapy only takes about six to eight minutes on the table each day, so keeping my eyes closed and some good music playing allowed me to withstand being immobilized, shared Jeff. You tend to lose track of time and feel very isolated when the treatment team closes the door, so the music helped, and I asked my amazing team to give me verbal prompts for each stage: imaging, starting treatment, halfway point, finishing up and coming into the room.
Jeff took three months of medical work leave to focus on his treatments and recovery. I had no idea I would need to miss so much work, but the reality was this was my full-time job and everything just took longer, especially eating and taking medications multiple times a day. Fatigue from both the radiation and the chemotherapy was real, so I rested when I felt tired.
The true side effects of the radiation didn’t emerge for Jeff until later in the process, including losing his sense of taste in a flash one day during week two. Jeff started using moisturizing lotion on his neck before he started treatment to stave off the impending skin irritation. He encourages others to do the same. Other side effects he experienced included saliva issues, severe dry mouth (especially at night), and painful mouth sores.
All food tasted “grey” is all I could say. I was losing weight, but the threat of a feeding tube kept me focused on consuming high-calorie foods. I ate a lot of mac and cheese and milkshakes with Boost Extra High Calorie added. I had separate side effects from the chemo, mainly nausea, starting on Saturday, so I told both my radiation oncologist and medical oncologist about every side effect happening, they usually had a solution, so don’t be shy about telling them what you are experiencing, explained Jeff.
The effects of radiation therapy are cumulative, so while you may look and feel ok by the end of your cycle, the side effects will continue for weeks afterward. While my skin was red and burned at the end, it got much worse in the weeks after I was done. Same with the mouth ulcers.
While there is an undeniable physical aspect to cancer treatment, Jeff encourages others to pay attention to the psychological aspects. It’s a lot. I am an optimistic, glass-half-full kind of person, but dealing with these medical issues and unexpected aspects was challenging. I had a variety of family and friends I relied on to talk through my issues, and I hope you have people you can lean on. They will gladly help, and you will feel better not keeping everything inside.
