February 24th, 2006, is one of those dates that I will never forget. On that day, after a week full of CT scans, PET scans, a bone marrow biopsy, blood work, and X-rays, I was officially diagnosed with chronic lymphocytic leukemia (CLL). This was not exactly how I planned on spending my upcoming 46th birthday. To be perfectly honest, I looked straight through the oncologist as he was explaining my new disease. I was in complete denial. In fact, I thought my doctor was a scatterbrain who was reading someone else’s results and chart. As it turned out, my doctor was 100% correct. The chart was mine, as was the cancer.
Understand that I have been an athlete my entire life. I grew up being one of those active kids who played every sport that I could sink my teeth into. I attended college on a soccer scholarship. I hung on the fringe of a pro soccer career and then played semiprofessionally for several years. I am a marathoner and an Ironman triathlete several times over. I lived clean and healthy. So, I assumed that I, of all people, should get a free pass on a disease like cancer. I was wrong.
I waded in a pity party for about 6 seconds and then realized that the most effective coping strategy for me would be to attack the leukemia with the same confidence and fervor that I deployed in my endurance sports racing and training. I also wanted to punch this thing square in the gut to send a message to the disease and to our teenage daughters that their ironman dad was still himself and was going to be OK. In that light, I often ran home from my chemotherapy treatments — because I could. And because I needed to.
I made another key decision during the days following my diagnosis — to be very visible and vocal in my fight and in my journey. I didn’t know anyone with my disease, and I thought if I could openly share what I was experiencing, it may help others. This decision also connected me with several organizations and gave me the opportunity to share my journey and hopefully give some positive insight to a broader audience.
I’ve learned a lot through these last 17 years, and I’ve made my share of mistakes. But I’ve found strength and comfort in living my life with the following four ideals as my guide. These serve as my personal control gauges that I monitor to make sure they are all operating effectively. And when they are, I am a happy and grounded person. When something is off, adjustments are needed.
1. Am I where my feet are at all times? I’ve learned the importance of living life in the present moment with little reflection on the past and little projection into the future.
2. Am I making sound choices? We all have more choices in our journeys than we realize. It’s important that I ask informed questions of the right people in order for me to make the best decisions for me.
3. Am I doing the things that satisfy my emotional sweet tooth? Some people panic when they are first diagnosed with something, and they stop doing the things they love to do out of fear or paralyzing anxiety. While it may be true that your activities and hobbies may need to adapt to your current situation, it’s critical that you do something that still feeds your soul.
4. Am I remaining in motion? Yes, I am an endurance athlete. So, motion to me will mean something different than for many people. I’m not suggesting that people should take up marathoning when they are diagnosed. But I am suggesting that the human body needs to move. And the appropriate amount and type of activity can be a valuable resource in your treatment arsenal.
So, here I am. During the 17 years I’ve been living with CLL, I’ve sat in the chemotherapy chair 54 times and have been on a number of different treatment therapies. What started out as a scary unknown has turned into something more uplifting than I ever could have imagined. It sounds crazy when I tell people that this disease has opened more doors than it has closed and created more opportunities than it has taken away. But that’s the truth I’ve lived, and I wouldn’t trade it for anything else.
Stephen Brown is a husband, father, grandfather, and lifelong endurance sports junkie who has been living above chronic lymphocytic leukemia since 2006. He has authored five books which speak about life, sport, disease, and their intersection and impact on Steve’s life. He continues to race and train endurance events, and supports worthy cancer supporting organizations along the way. For more on Steve, visit www.remissionman.com.