Skip to main content

Inspirational Stories

Jim

chronic lymphocytic leukemia (CLL)

Carlsbad, CA

Stay focused, stay positive, live as life as normally as you did before diagnosis, and do your best.

I was diagnosed with chronic lymphocytic leukemia (CLL) at the end of 2018 in my late 50s, which is earlier than the average age of diagnosis (low 70s). The nurse told me that I have the “good cancer.” It was a shocker to me. I was on medicine immediately for almost two years. I had some other medical issues arise and side effects during this two-year period. I felt like I was falling apart. I put my head down, did what the doctors recommended, and plowed through it all. Almost four years later, I am in remission and doing well. I even got through COVID.

The fact that I am currently living a normal life is one reason I decided to write this. During the two-year period when I was being treated, it didn’t stop me from living similarly to before. I had fatigue and didn’t feel good at times, but I plowed through it all. Now I am golfing, surfing, playing softball, walking the dogs, and participating in other outdoor activities. I am doing all of these activities as well or better in my early 60s than before diagnosis. I am also competing at a local and national level in senior amateur golf tournaments for scratch golfers. CLL is not changing a thing or prohibiting me from reaching future goals. You can get through this.

I worried too much in the first year. Several folks told me I’d see my daughter get married and not to worry. There is no guarantee, but these words are encouraging and resonate at some point. The medication for CLL has made a major advance in the last five or 10 years, which gives all of us more hope and great news.  

I have a few tips to consider. Researching is normal. I’d recommend starting with the most reliable resources. Find a CLL specialist. I started with a local oncologist who was a fine doctor, but he did not spend all day every day with CLL patients. The CLL community of doctors is very close-knit as well. I regret not having a CLL specialist to start. I love my CLL doctor.

As Kareem Abdul Jabbar said in an interview (he has CML), “Many people have the chance to beat this cancer, if you do it the right way and follow the instructions of your doctors they’re seeing really good results with new drugs.”

Do your best and listen to your doctors so you can make the best decisions possible. Find a support group if needed. The medical advances of today give us great hope that we can live a normal life.

JP