Leukemia: "My active lifestyle has played a huge part in my overall health"

Hi Stephen,

Thank you for agreeing to share your story with Carenity.

First of all, could you tell us more about yourself?

I am a 62-year-old husband, father of two, grandfather of four, and running & triathlon junkie who has been racing since the mid-1980s. My wife and I reside in suburban Philadelphia but frequent our summer home near Ocean City New Jersey in the warmer months. I’ve also been living with an incurable blood cancer since 2006.

When were you first diagnosed with Leukemia? What were the first symptoms? How many doctors did you see and what tests did you have to take?

Initially I was having difficulty swallowing. First it was certain foods, then liquid, then it became difficult just swallowing saliva. My PCP prescribed a few different things to try to get a handle on it thinking steroids or an antibiotic would do the trick. When nothing worked, I went to see an ear, nose, and throat specialist who saw that my tonsils were huge and scheduled a tonsillectomy. It was the preadmission bloodwork for the tonsil surgery that first revealed an extremely elevated WBC. From there I was referred to an oncologist/hematologist who ordered a battery of tests such as CT scan, PET scan, bone marrow biopsy, x-rays, and more blood work. Those collective results all pointed to a diagnosis of chronic lymphocytic leukemia.

How were you told about the diagnosis and how did you feel about it? Did your loved ones support you? Was it easy for you to talk about the disease to those around you?

One week after my new oncologist ordered all the initial tests and scans, I returned to his office for a follow up visit. It was then that I first heard the words “chronic lymphocytic leukemia”. To be honest, I thought my doctor was crazy and assumed he must have mixed up my chart with some other patient’s. As we talked through it, the reality began to sink in. I made the decision very early to try to be as vocal and transparent about my diagnosis and subsequent treatments as possible with the hope that it might benefit others. Although the hardest part was explaining to our daughters that I had a blood cancer requiring several rounds of chemotherapy. I didn’t want them to see me as anything less than the athlete and person they knew me to be.

How did the illness evolve over the years? Have you had to adapt your lifestyle? If yes, in what ways?

I’m happy to say that managing this chronic form of blood cancer has not really derailed my lifestyle at all. In fact, I often say that this disease has created more opportunities than it has taken away and opened more doors than it has closed. Obviously, I’ve needed to be more cautious when my immune system is compromised and I try to eat smart, stay hydrated and limit any alcohol consumption. But I look at those as smart lifestyle decisions for anyone and not necessarily a byproduct of the disease.

What were your treatments? Did you try different treatments after each relapse? What did you find was the most effective treatment? Have you experienced any side effects with the treatments? If so, which ones?

Over my almost 17-year journey I’ve been through multiple treatments with a variety of drugs. Including fludarabine, rituximab, bendamustine, decadron, prednisone, ibrutinib, and acalabrutinib. Some did have minor side effects, but they were manageable. For the last several years, I’ve been on an oral targeted therapy drug called acalabrutinib which has worked remarkably well to keep me in remission with virtually no side effects at all.

How has the disease affected your professional and personal life?

I can’t say that my disease has had any negative impacts on my personal or professional life. If anything, it has enriched my life because of the people I’ve been able to meet throughout my journey. And the things I’ve been able to do.

You have a blog called “Stephen Brown – Remission man”. Why did you start this endeavor? What messages do you want to convey to your readers?

I started and continue to maintain my blog site to give my disease a greater sense of purpose. I use that as a portal for all things cancer and multisport training and racing. The most important thing I want fellow patients and their families to realize is that they don’t have to go through their journey alone. There are support systems out there that can play a key role to your recovery and healing.

Can you elaborate on your thoughts on exercise and cancer? How did your involvement in sports help with your condition?

There is no doubt in my mind that my active lifestyle has played a huge part in my overall health. I think it’s kept me physically, mentally, and emotionally strong and allowed me to endure some of the treatments that may have been more difficult if I were not as active. Move IS medicine. And that doesn’t mean you need to run marathons to be healthy, but you do need to remain as active as possible.

What are your plans for the future?

My plans for the future are to continue to enjoy life on my terms. That includes participating in a lot of multisport events and spending as much time with my family as possible.

Finally, what advice would you give to Carenity members also affected by chronic illnesses?

A diagnosis can suck the spirit right out of your soul, but only if you let it. We all have choices in this world and that includes choosing how we process and handle disease and illness. I try to live my life by constantly assessing and evaluating these four keys:

Feet: Am I remaining where my feel are at all times and not worrying too much about what’s already happened or what may lie ahead?

Choice: Am I making wise choices and controlling the things that I can control?

Chocolate: Am I making sure I feed my emotional and spiritual sweet tooth at all times by doing the things that truly quench my soul?

Movement: Am I remaining active and doing the best I can to keep the demons at my back and in my rear-view mirror?

A big thank you to Stephen for his interview!  

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Take care of yourself!