Leslie T. on her wedding day

When I was diagnosed with chronic lymphocytic leukemia, I was determined to keep living my life. Throughout my life, my physical health had always been good, which was something I took for granted. I cared for myself physically and mentally by spending time outdoors and loving my work as a full-time pastor at my church in Ohio. So, I was taken by surprise when I visited my primary care doctor in November of 2006 for a routine annual exam, and my labs showed a high white blood cell count.

My doctor referred me to a hematologist-oncologist for further testing. My thoughts immediately went to the worst-case scenario, and I began researching potential conditions I might have. A few weeks later, I was diagnosed with Stage 0 chronic lymphocytic leukemia (CLL) at the age of 47. “This is the laziest form of leukemia you could have,” my hematologist-oncologist said. “It will probably be about 20 years before you need treatment.” Hearing that was a relief.

As I talked to my oncologist and dove into doing my own research, I learned that according to the American Cancer Society, CLL is a type of cancer that starts in bone marrow cells but then moves into the blood.¹ It is the most common leukemia in older adults, and the average person’s lifetime risk of getting CLL in the United States is about 1 in 175.² Many people with CLL don’t experience symptoms for at least a few years, which is exactly what happened to me after receiving my initial diagnosis.

As a Black woman, I consider myself fortunate that my CLL was caught so early. According to the American Journal of Hematology, CLL patients in minority racial groups often have poorer prognoses than Caucasian patients for a variety of reasons, including not seeking medical attention early enough.³ This can result in Black patients being diagnosed at later, and more symptomatic, stages of disease.

Soon after my diagnosis, I turned to a support group led by The Leukemia & Lymphoma Society to connect with other people with blood cancer and learn more about CLL. The group was very helpful and gave me actionable practices and tools to apply to my life. I maintained regular oncologist visits during the “watch and wait” (known as the active surveillance period) where we monitored my disease and used techniques like focused breathing when my nerves kicked in during doctor’s appointments. I was mindful of potential infections and washed my hands frequently, but otherwise continued my work, physical activities and social life undaunted by CLL. I also turned to my church community and leaned into my faith—which helped me shift my perspective and not overthink.

A couple of years after my diagnosis, I began to feel unusually tired. I couldn’t walk a mile without getting exhausted. I went back to my doctor where I learned I was extremely anemic and needed an immediate double dose of red blood cells. This was the first time my CLL symptoms affected my day-to-day life.

But that experience didn’t stop me from being active. When I turned 50, The Leukemia & Lymphoma Society was hosting a trip for members interested in participating in a marathon in Alaska—an opportunity that would check two items off my bucket list. I asked my doctor if I was healthy enough to go, and he told me to “plan for it, train for it”—so I did. I had another blood test a month before the race, and surprisingly my numbers dropped as opposed to going up. I walked the marathon in Alaska, proving to myself I was still capable of such physical feats! After the race, my doctor reassured me, “I will never tell you that you can’t do anything.” I continued walking and hiking for over a decade while my CLL remained stable, and I stayed in the active surveillance period.