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Driving Forward after a CLL Diagnosis

Read Time: 4 minutes

Elise Mahaffie
Elise Mahaffie

Elise Mahaffie wakes up, gets dressed, and hops in her green Subaru. As she heads through the Teton Pass, she has a quiet moment of reflection. It's a four-and-a-half-hour drive from Jackson, Wyoming, to her destination. Sometimes, her husband Jim comes with her, when they can find someone to help with their Bernese Mountain Dogs Vivian and Boomer. Winter makes for a more treacherous trek, but Elise has her thoughts, some music, and NPR to get her through. A long drive is nothing new.

In 2011 while living in Bethesda, Maryland, Elise's doctor noticed something was amiss. "He asked if I had a cold or had recently been sick. The next year, he asked the same question and then told me my white cell count was trending upward. I was diagnosed with chronic lymphocytic leukemia. It's incurable." Chronic lymphocytic leukemia (also called CLL) is a cancer of the blood and bone marrow that usually gets worse slowly. In its very early stages, CLL does not cause any signs or symptoms. During this time, doctors closely observe patients but do not start treatment.

After receiving the difficult news, life rolled on. During the "watch and wait" stage, Elise continued to stay physically active and pay attention to healthy eating. "The first several years, I was definitely worried and wasn't sure of what my next steps were going to be. I tried to steer clear of reading too much on the internet, which can be scary."

Elise happened to do some pro-bono graphic design work with the Lymphoma & Leukemia Society. At an event, she met Dr. John Byrd, a hematology specialist from the James Cancer Hospital in Columbus, Ohio. She started making the 410-mile trip from her home in Maryland to see Dr. Byrd. "I wasn't at the point where I needed to be treated yet. A new and very promising front-line treatment, Ibrutinib, was still in clinical trials. Dr. Byrd told me to 'hang in there, good stuff is coming.'"

After five years, Elise and her family were spending more time in Wyoming and needed to find a new CLL specialist. Dr. Byrd recommended Deborah Stephens, DO. Dr. Stephens completed her internal medicine residency at Cleveland Clinic and fellowship training at Ohio State University. She is the physician leader of the Hematology Clinical Trials Division at Huntsman Cancer Institute at the University of Utah.

"We had been transitioning to move out to Wyoming for years. On my first visit with Dr. Stephens, she was very straightforward. It was not a great prognosis due to my markers and the treatments that were available at the time, but she was very positive about future options."

"During the 2019 ski season, I had a callous on my foot which didn't heal all winter. A few months later, I went to a dermatologist and got the huge shock that it was an invasive malignant melanoma."

Months before, Stephens warned Elise about skin cancers in CLL patients and encouraged her to see a dermatologist due to her increased risk. The removal of the melanoma on her foot was difficult, but Elise was lucky it didn't spread and lead to amputation. "I'm still able to maintain my active lifestyle of skiing, yoga, hiking, and dog walking!"

Despite the setback and facing an incurable disease, Elise stays positive. "The more I talk to other people—especially CLL patients and specialists—it makes things manageable. I try to live my life without thinking about it." Elise is currently taking Ibrutinib and having very positive results. "Generally, all my blood counts are within a normal level. Plus, there are so many new treatments on the horizon if my current treatment stops working. The future feels very hopeful."

Having cancer means Elise is immunocompromised. Combine that with a global pandemic and things get more complicated. However, it's been quite the contrary. "All my appointments were virtual during COVID, so that's made things easier. I haven't eaten in a restaurant or flown in a plane yet, but hope to soon. I will probably continue to mask up for the foreseeable future to protect myself. Not just from COVID, but other illnesses as well. We feel so lucky to be living in a place like Jackson Hole. It's been a dream!"

Elise's continues to make her winter trips through Teton Pass, but with the support of Dr. Stephens and Huntsman Cancer Institute, she doesn't mind the journey.

Cancer touches all of us.