I Rang the Bell for Lymphoma. Three Years Later, I Chose Hospice

Back in the fall of 2022, I was diagnosed with stage 2 nonspecific non-Hodgkin lymphoma. The oncologist at Ellis Fischel Cancer Center at University of Missouri Hospital in Columbia, Missouri, gave me three months to live since it was heading toward stage 3 already and it was aggressive and fast growing. By the next Monday, I had started chemotherapy, living in the hospital one week of every month for the next half a year. I also did monthly epithecal injections into my spinal fluid to prevent the cancer going to my brain, which they feared may happen with just a single cell taking root there and eventually growing to thousands.

During that time, I wrote poetry about my cancer experience. They were sardonic, funny, touching and sad. What I learned is that you surrender to the cure and to the treatment. I wrote and published enough poems to fill a book titled "Running from the Reaper: Poems from an Impatient Cancer Survivor," which I designed myself. The book was later picked up by the Leukemia and Lymphoma Society website as suggested reading.

On February 6, 2023, I "rang the bell," signaling that I was cured. For the next three-plus years, I went to the hospital for follow-ups, including blood work and a brief consultation with an oncologist. I thought I was over cancer, but two years out I felt what can only be described as "brain fog," a feeling of losing words and thoughts. I blamed it on COVID-19 as much as getting older. I was in my early 60s and eligible for early Social Security. Months before I turned 63, I was bedridden for over a month. I lost muscle: 25 pounds in a month. I couldn't walk without severe and sudden dizziness, which made me carry a bucket everywhere I went, which wasn't much. I threw up a dozen times a day, mostly bile since I wasn't eating or drinking. But it hurt nonetheless. I was wrestling with a possible diagnosis of alpha-gal brought on by a tick bite. Alpha-gal makes a person allergic to meats: all red meats — steak, burger, sausage, bacon ... you name it. I couldn't eat it without breaking out in hives all over the place. I even had to go to the local emergency room for an epinephrine shot, steroids and watchful care.

Less than a week after getting an alpha-gal diagnosis, I was at the hospital in Columbia, and in no time they did a CAT scan, MRI and brain biopsy that revealed a week later that I did indeed have brain cancer. It had not metastasized from elsewhere. The lymphoma went straight to my brain and only my brain, as doctors said it might. I was sick as a dog. I watched 30 movies during that time, but I slept a good deal. I was always dizzy and always saw double vision. It didn't help that my truck was struck in a hit-and-run and totaled by the insurance company. It took weeks to get money and find a replacement for the value they gave me. I have a lovely wife who retired young to spend her life with me. I also have two daughters: one 38, the other almost 16 years old. She goes into 10th grade this fall. I had hoped to see her grow and mature as a person. But I had no good option. Even the best and most expensive option could only buy a year or less at a 36% success rate. I chose hospice care. They called the Kirksville branch from the hospital and set things up for me. The nurses, social workers and chaplain have been great. They say their purpose is to "make me comfortable and to be with less pain." Luckily, my pain level is 0 out of 10. I'd say I'm at 90% most days. I have permission to have a higher dose of steroids, which really helps, but I'm at the bottom of the size limit. In other words, it's easy to take care of me now.

Choosing hospice was difficult. I know of folks in their 90s who were in their sixth cancer battle but wanted to live. I know of two people younger than I am who died terribly from brain cancer. They shriveled up and vanished. They had insurance, leave and hospitalization with chemotherapy. Brain cancer is no joke. Doctors said it's growing fast. I don't know how long I will last: weeks, months or a year or longer. Some days I'm good with my decision, but some days I'm mad at the world that I may never again see the green of summer or see my daughter graduate high school and go to college or join my lovely wife in her retirement years as we had planned.

This piece reflects the author's personal experience or perspective. For medical advice, please consult your healthcare provider.

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