When My Husband's Lymphoma Came Back, It Went to His Brain

2026 has been a rough year for our family. In the last five months, we've lost all the "when we retire" dreams, including dreams of building a small, beautiful retirement home on 3.5 acres on the edge of town with a view across rolling fields and forest, dreams of traveling, enjoying good food and relaxed time together, dreams of being together to see our teenage daughter graduate high school and start the rest of her life.

In mid-March, we learned building our retirement home would be way more expensive than we expected. We decided to sell the land. It was super stressful because we had already entered a contract to sell our existing home. We lost sleep and worried about whether the land would sell quickly. But we still had each other and could look forward to good food and travel and time with our daughter.

In May, I retired after 25 years of teaching at a public university. My best friend hosted a nice retirement party, and the very next day John became sick. At first, we thought it was a virus, that he was susceptible because he had hardly slept since mid-March. But he didn't get better. He couldn't keep food or liquids down and spent time lying in bed watching movies. He had headaches and double vision. After days of this, he would feel enough better to have some chicken soup, maybe a sandwich. A few days later, he was well enough to get up and do some things around the house and eat something more substantial. The first time, it was spaghetti and meatballs. The next day he was back to square one, unable to keep anything down. The cycle repeated. On Memorial Day weekend, he felt good enough to cook hamburgers and hot dogs. Then he crashed the next day.

As a scientist, I am trained to pay attention to patterns. There seemed to be a pattern related to what he was doing or eating when he felt pretty good and when he started feeling really bad. What could do that? We live in rural Missouri, where alpha-gal syndrome is becoming more common. As we understood it, this tick-induced allergy can cause severe symptoms like John was experiencing. We asked his doctor to run the test for alpha-gal. We started being careful about what he ate (no red meat, then no dairy ...). The illness never went away entirely.

On a Tuesday in early June, we got confirmation of allergy results consistent with alpha-gal syndrome. We actually said, "Well, at least it isn't brain cancer." We thought we just had to be more careful with food and personal care products, and we'd be able to learn to live with it. That Friday, John was so ill we went back to his doctor to ask for help figuring out what to try next. He sent us to the emergency room at a university hospital a couple of hours from home for help figuring out what was going on. He didn't think it was just alpha-gal, though that did explain the early cycling pattern.

I helped John into the ER. The waiting room was crowded that Friday afternoon. Before I got back from parking the car, the triage team had him in an exam room and was concerned about whether he had had a stroke. They ordered a CT scan of his head.

The doctor who came to tell us the results said it wasn't a stroke. What the scan showed instead were several lesions in his brain, consistent with cancer that had metastasized from elsewhere. It was cancer in his brain, and it was alpha-gal. The lymphoma John had been diagnosed with in 2022 had gone to his brain. We knew it could happen. He had intrathecal injections during each of six weeklong chemotherapy stays.

The doctor ordered an MRI of his head. I stayed with him in the ER exam room. We thought we would learn more from the MRI, but not really. It just confirmed in more detail the CT diagnosis. They recommended John be admitted to the oncology ward, where they could do additional scans to see where else there might be cancer. I left before he moved because our daughter was home alone two hours away and I wanted to be home before dark.

The diagnosis tunnel is awful. Over the weekend, John felt stuck. He wasn't able to get up without help. He could barely use his phone. He had headaches and was dizzy and had double vision. He complained that the choice of movies was the same as three and a half years earlier.

Monday, we learned there was no cancer in his abdomen. It was definitely the lymphoma that had gone to his brain. He was miserable and couldn't imagine starting chemotherapy so low. We decided I would pick him up on Tuesday and bring him home with hospice care.

We talked for hours that night. I cried the rest of the night. I moved furniture to make room for a hospital bed. In five months, we lost all our dreams of the future.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.