Don't Ignore Your Wake-Up Call
When one woman experienced symptoms of chronic lymphocytic leukemia, people blamed her nerves and told her to rest. Instead, she listened to her body.
BY Rachelle Berfond
PUBLISHED December 11, 2019
I am a mature, older woman now, but always remember having a problem with anemia as a child. My mom would take me for B12 shots every week to build up my blood. I often wonder: Might this have been the start of my chronic lymphocytic leukemia (CLL)?
It feels like just yesterday, but it has been 12 years since I was diagnosed with CLL plus hemolytic anemia. I was in my 40s, teaching my first-grade class a lesson, and felt very weak. Bad feelings like this were happening more frequently. My appointment with my gynecologist was my wake-up call. He told me to get a complete blood work-up because of my symptoms and bad color. I was shocked when it was confirmed that I had CLL.
My general practitioner suggested that I see a neighborhood oncology group. Under their supervision, I began a watch-and-wait period that lasted almost two years. At the end of that period, my hemoglobin was going down and my white count was going up, and I had more and more fatigue. My internist suggested that I go to Memorial Sloan Kettering Cancer Center for a second opinion. It was there that I met Dr. Nicole Lamanna, who insisted on a bone marrow aspiration. This revealed reasons to start me on high doses of steroids and then Rituxan (rituximab) infusions. I continued working and regained some strength.
Soon afterwards, though, I had to retire from teaching. My white count was still climbing and my hemoglobin was dropping. Dr. Lamanna and the team at Sloan suggested chemotherapy. I lost my hair, and some of the side effects were permanent, including neuropathy and hearing loss. But on the plus side, 12 years later, I am still here. I am back to a watch-and-wait program at Sloan, and very grateful to be in remission.
My wake-up call was not feeling well, which included being very tired and weak and having night sweats. Many people said it must have been my nerves and that I needed to rest more. My advice to people is to know your own body. Who knows it better than you?
To this day, I get so upset when someone says, “You have CLL, and it’s the best cancer to have.” Absolutely not. There is no good cancer, but the new treatments are a great improvement over older ones and are easier to deal with. New treatments only target the bad cells and generally do not destroy the good ones. CLL is still not curable, but with all the research being done, I am sure it will be in the near future.