Maxine and Dave Wilson finish each other’s sentences. They feel blessed to have each other, given what Maxine has been through.
She was unexpectedly diagnosed with non-Hodgkin lymphoma in 2009 at age 57. It was discovered during routine blood work for a primary care visit, and she had been feeling well. “The word ‘cancer,’ it just blew me away,” says the Syracuse woman. “But I just decided to live with it, pray about it, and after that first treatment, they said I was fine.”
But Maxine Wilson’s bout with cancer was far from over. She endured four recurrences during the next several years. Each time, the disease came back within one year of completing treatment. Much of that time the couple was living in Georgia. At one point, she went for a work-up at Emory University’s cancer center, and doctors there discovered she also had cold agglutinin disease, a rare type of anemia. When a person with this condition is exposed to cold temperatures, it can cause the immune system to mistakenly attack healthy red blood cells. Those were difficult times.
“I had many up-and-down days,” Maxine Wilson says. “But I got my strength from praying to the Lord, and I went on with my life.”
Dave Wilson interjects: “It wasn’t that simple. Chemo was so devastating to her… it was not a cake walk, it was very tough stuff.”
She agrees and recalls that she became depressed. “I would think, ‘Why is this happening to me?’”
In 2015, they decided to return to their native upstate New York, despite the cold weather. Maxine Wilson missed her mother, who lives in Auburn, and the Wilsons looked forward to being closer to children and grandchildren in New York City.
Aggressive cancer treatments continued under the care of her Syracuse oncologist, Tarek Sousou, M.D. In 2016, he recommended a stem-cell transplant at the Wilmot Cancer Institute. She hoped that would be the end of cancer, but again the disease returned.
“That one really knocked us down,” Dave Wilson says. “We mistakenly thought the stem cell transplant made us good-to-go, forever.”
Sousou told them there was still another option: CAR T-cell therapy. He urged them to return to Wilmot, and to meet Patrick Reagan, M.D., a CAR T-cell specialist, and Anna Morrison, R.N., OCN, who would become their new care team. The Wilsons agreed, and said it was a “wonderful” decision.
Maxine Wilson received the treatment in the summer of 2018 and experienced some expected but severe neurological side effects. Initially, she didn’t recognize her husband or her doctors, and that was frightening, especially for Dave. But a week later, the symptoms eased. She recalls the happy day when her mother and sisters came to visit at Wilmot, and she knew who they were.
She has been cancer-free for two years — her longest period of remission ever.
“I’m a new person!’ says the 70-year-old retiree. “I wanted to get any treatment I needed, to go on with life. I was a willing patient.”
The couple admits they get anxious around every new follow-up test with Sousou, but Maxine Wilson says she’s in good spirits and Sousou is pleased about the two-year milestone.
The past several months coping with the coronavirus pandemic have been manageable compared to cancer, she says. The couple protects their health by staying home unless it’s absolutely necessary to go out, masked and gloved. She calls her mother, who is in her 90s, every evening. She also talks frequently with her sisters and other family via WhatsApp, and tries to stay active by doing housework. And her beloved Dave is always by her side.
“We get cabin fever,” she says, “but we’re fine.”