Experts and Attitude Help Grandfather Face Primary Central Nervous System Lymphoma

Steve Kelley is the quintessential glass half-full guy. Still, he realizes his reaction to learning he had an extremely rare cancer known as central nervous system (CNS) lymphoma may seem unusual.

A few weeks after his June 2018 diagnosis, Kelley, then 64, gathered his family and friends together. He didn’t want to focus negatively on the uncertain outcome or his upcoming treatment at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC).

He just wanted to celebrate the present.

“I’ve always seen myself as someone who deals with whatever life puts in front of me,” says Kelley of the pre-treatment party he organized at a bowling alley near his home in Sharon, Mass. “I wanted everybody to know I felt the same way now, even with cancer. I was celebrating the challenge ahead.”

Since then, through intensive chemotherapy, followed by an autologous stem cell transplant in November 2018, and then several months re-strengthening his immune system, the father and grandfather of four has kept up this positivity.

While it’s true he lost his hair, fingernails, and dealt with other serious side effects during treatment, Kelley explains, things have greatly improved since then. Forced to go without his favorite activities of swimming and mountain biking for a while, he is now feeling strong enough to think about triathlons. He’s even handling snow plowing and other duties associated with the real estate management and roofing businesses he founded at age 19, and still leads today with the help of sons Phil and Dave.  

And if he must be among those living with primary CNS lymphoma, Kelley says, he couldn’t have picked a better time or place.

The Central Nervous System Lymphoma Center, established at DF/BWCC in December 2017, was the first facility in the world dedicated to providing comprehensive care and research for patients with this rare cancer. The center offers advanced treatment options including surgical biopsy, chemotherapy, radiation therapy, immunotherapy, and targeted therapy, as well as placement for qualified patients on clinical trials.

“I tell you, I’m one lucky son of a gun,” says Kelley.  

Meeting his care team

It is Kelley’s upbeat attitude, he believes, that led him to initially miss the warning signs of his CNS lymphoma. Two areas impacted by the cancer are eyesight and orientation; although he had been having trouble with both for several months, he says he learned to subconsciously compensate.

“As strange as it sounds, I would tilt my head left or right to see,” says Kelley. “Things didn’t get really bad until one day when I was driving six miles to my house on a route I had known for years. There wasn’t a lot of traffic, but I kept seeing lines across my eyes, and was so disoriented it took me three hours to get home. When I told my wife, she insisted we go to the nearest emergency room.”

There an MRI revealed a mass in Kelley’s head, and he was immediately sent to DF/BWCC for more tests. He then had what he calls another stroke of good fortune, in the form of oncologist Lakshmi Nayak, MD, director of the Central Nervous System Lymphoma Center. Right away, Nayak and physician assistant Alexandra Torres, PA-C, put Kelley at ease with their knowledge and warmth.

“Dr. Nayak analyzed my condition and synthesized a treatment plan that brought me back from the kind of a cliff that I was holding onto,” Kelley says. “She was terrific.”

Similarly, Nayak says, Kelley’s approach to that plan was helpful.

“He was certainly a perfect candidate for undergoing an autologous transplant because of his age and fitness,” says Nayak, “but importantly, his attitude throughout the arduous process was amazing.”

Cognitive help ahead

Kelley, who meets regularly with Nayak and her team for checkups, has not yet had a cancer recurrence. Recently he marked a year since his stem cell transplant with another celebration — Thanksgiving with his family — and in March he plans to meet with a specialist at DF/BWCC to work on improving the cognitive skills impacted by his diagnosis.  

Meanwhile, with the ongoing support of his “incredible” wife, family, and close friends, Kelley is keeping his spirits up and forging ahead. In addition to running his company, he is enjoying a 20-year secondary career as a Cambridge College professor. Among the courses he teaches are leadership, conflict management, and effective listening, all of which he says have been indispensable guideposts in his recovery.

“It’s funny — I was already working on writing a book about how people can help themselves through tough times, and now I’m reworking it to include my cancer journey,” Kelley says. “One of the things I like to tell people is that maturity is the ability to make the best of any situation.

“I hope to be proof of that.”