Chronic Lymphocytic Leukemia Survivor

One Day at a Time

Nikita Jackson chooses to be positive instead of focusing on the negatives surrounding her chronic lymphocytic leukemia (CLL) diagnosis. With the help of drug therapy, she has reached remission and learned to manage her CLL without sacrificing her quality of life. As a peer navigator, she encourages others who are diagnosed with cancer.

Today, I know that chronic lymphocytic leukemia (CLL) lowers your ability to fight off infection, but when I first was diagnosed with sinusitis, I had no idea it was the beginning of my CLL journey. Over the next four years, I had an elevated white blood cell (WBC) count accompanied by headaches, a urinary tract infection, another case of sinusitis and strep throat. Finally, a terrible headache and trouble swallowing sent me to the ER. The ER physician told me that because my white count had been elevated for so long, he was referring me to a hematologist because he thought I might have cancer.

I felt sure I couldn’t have cancer. Aside from hay fever, the occasional migraine, and chills and night sweats (which I blamed on perimenopause), I felt fine. But, I met with the hematologist.

He examined me, ordered bloodwork and asked about my medical history. I told him my father, who passed away in 2006, had leukemia. He said he’d call me when my results came in.

I was getting ready for work one day when he called to tell me the news that no one wants to hear. I had chronic lymphocytic leukemia — the same diagnosis as my father. I was 51 years old.

I was shocked and then just numb. That gave way to moments of anxiety, guilt, fear, shame, anger and sadness. My emotions were all over the place. Did I do something to cause the cancer? I worried about my two children and couldn’t stop thinking about what the future might hold. I didn’t stay in this state of mind for long though. I knew that the same God that took care of me yesterday would take care of me today and every day thereafter.

The CLL was diagnosed at Stage 0, so my treatment plan started out as “watch and wait.” I had lab work every three months and follow-up appointments with the doctor every six months.

My WBC count stayed around 15,000 for about a year. Then, it started to rise. My follow-ups became more frequent, and when my WBC count reached 122,000, the doctor said it was time to begin active treatment.

Because of my genetic testing results, my doctor recommended a medication available in a pill that I could take from home. He assured me that if that pill didn’t work, we could try other options. It sounded simple, but I was scared. Until then, I couldn’t stop thinking about the CLL progressing, wondering if my WBC count would change between appointments. Even though I knew it had, I really didn’t want to take any medication at all. I worried about the side effects.

Again, I prayed about it and researched the medication to help make my decision. I talked to other people who had taken it and learned that many were able to manage their CLL as a chronic condition. I found peace, and I moved forward.

After taking the pill for almost two months, my WBC count came back down and stayed. I’ve had very few side effects and have found ways to manage the ones I do while having a good quality of life.

My family and friends have always played an important role in my life. They encourage me to keep a sense of humor. They show their love and support through their laughter and caring attitudes. When family works together, they can certainly keep hope alive.

Even before I started active treatment, I was helping others as a peer navigator for the Friend for Life Cancer Support Network. We’re a team of cancer survivors who provide one-on-one emotional support to anyone experiencing a cancer diagnosis. We communicate by text, email, phone and even in person.

When I talk to people who are newly diagnosed, I tell them about my experience with the same illness and remind them that everyone responds differently. I focus on the positive.

I’ve found that I can manage my cancer as I would any other chronic illness, like high blood pressure or diabetes. In my experience, CLL is a quiet disease, and it lets me go about my business. But if it isn’t treated, it could become life-threatening so I follow a healthy diet with lots of fruits and green vegetables, and I exercise. Weather permitting, I walk daily, or I use my stationary bike. I enjoy singing and creating inspirational and uplifting songs, which helps me emotionally. I also use my voice toward helping legislate federal and state cancer laws.

My treatment plan gives me confidence and keeps me at ease. Right now, I’m enjoying my life and having fun with my family. I feel like everything is under control, and I’m focused on living, one day at a time.