I’m 61 years old. I was diagnosed with chronic lymphocytic leukemia (CLL) the first time at 51, unaware of any symptoms. I was told that my diagnosis at my age was unusual. After chemotherapy and remission, the disease returned during COVID while I was being treated orally. The second experience was much worse. I’m in clinical remission for the second time in 10 years.
I had been feeling unwell for quite a while. I would come home from work and go to bed right after dinner. I would sleep for hours and still be fatigued. When we had afternoon meetings, I would fall asleep. My husband and I kept thinking it was my very stressful job. I was on airplanes three times a week and would be traveling all over the country. I wasn’t eating or sleeping well.
I was diagnosed with chronic lymphocytic leukemia (CLL) in May 2022. It was a rough time with 10 blood transfusions, weeks in the hospital, and learning a new “normal”.
But that is not my story.
While enjoying a 2021 spring vacation with my husband in Kentucky, I began to feel severe pain in my right arm. Over several hours, the pain increased, but I didn’t want to interrupt our vacation plans with a hospital visit. By late evening, my husband could tell that we must get to an emergency room PRONTO! But where in this large city can we find one?
I am a 72-year-old retired Information Technology professional. I was diagnosed with chronic lymphocytic leukemia (CLL) in June 2002 and remain in active treatment today. Over the last 22 years, I have had more than 700 trips for doctor visits, treatments, lab test, emergency room, hospitalizations, and pharmacy.
I thought I was super healthy.
I was diagnosed at age 33 as a result of an unrelated blood test, very young, I was told. Fluorescence in situ hybridization (FISH) showed low risk. My local oncologist sent me to a regional teaching hospital to get a second opinion, and that opinion was, "If I had to pick a cancer, this would be it." Terrible start!
My dad, Panos, was diagnosed with kidney cancer when I was in the fourth grade. His cancer progressed very fast, and he passed away in 2019. My mom, Tricia, was diagnosed with chronic lymphocytic leukemia (CLL) shortly after. She has had many doctor appointments during this time, and I am so excited to be able to support her through it all and help raise awareness!
