Leukemia Survivor

Ironman survives leukemia and becomes 'Remissionman'

 Feature Survivor Leukemia
Name: Stephen Brown
Age: 49
Hometown: Upper Darby, Pennsylvania
Type of cancer: Chronic Lymphocytic Leukemia (CLL)
Stage at diagnosis: Stage 1
Current date: August, 2009
Current status: Couldn’t be better. 200 percent!

1. How was your health when you were diagnosed?
Excellent except that I was having difficulties swallowing. My tonsils were “huge” at the time and I was scheduled to have them removed when my pre-surgery blood work came back abnormal.

2. Where were you initially diagnosed?
Dr. Stephen Shore, an oncologist (with Consultants in Medical Oncology & Hematology) diagnosed me after I was referred to his group.

3. What treatment was initially recommended?
The initial chemotherapy treatment protocol was to be four one-week cycles of two different agents, fludarabine – a broad spectrum chemo agent – and rituxan (rituximab), which is a monoclonal antibody. I was infused on an outpatient basis with rituxan on the first day of the week and fludarabine all five days. I did this the first week of the month and then had three weeks off. I hit remission between the second and third cycles and tried to talk Dr. Shore into letting me stop, but I couldn’t convince him.

4. Did you get a 2nd opinion?
I did not have an “official” second opinion, but I had friends in both the medical and research fields that talked with me and confirmed the diagnosis and treatment protocol. That was reassuring to me.

5. Are you still in treatment?
No, but I did do preventive maintenance for the two years following my diagnosis.

6. Do you take any nutritional supplements? If so, what do you take?
I take nutritional supplements, but probably none of them has anything to do with my treatment or diagnosis. I take things for good general health – the kind of thing that anyone might take: a multi-vitamin, multi-mineral supplement, and a strong anti-oxidant collection of Cs and Es. I use basic nutritional common sense.

7. Did you change your exercise program? How is it different from before your diagnosis?
I have not changed my exercise program at all. I still compete in Ironman triathlons, marathons and short distance races. I also coach athletes for The Leukemia and Lymphoma Society’s Team in Training. I am, however, wiser and more sensible now. There was a time when I might have been in the middle of a training cycle and even if I was excessively tired, I would have bullied through it. Now I listen to my body better and if I’m tired, I realize it is trying to tell me something. I won’t burn myself out the way I probably did in the past.

8. Did you change your stress reduction program? How is it different from before your diagnosis?
I have always handled stress the same way – and exercise has played a huge part in that. The biggest eye opener for me is that stuff can happen to anybody. I still handle stress the same, but I would say that after being diagnosed with cancer, my definition of a stressful situation has changed. For example, even when I am training for something difficult and something long, I try to be thoughtful and figure out what I need to do to successfully complete that race. That may not be what I need to do to be top 10 or have a personal best. I want to finish happy and strong and mark it as an accomplishment. I won’t beat myself up . . . I still have to come home to my family and go to work the next day.

9. Are you currently considered to be disease free?
Yes

10. What are you doing to stay disease free?
I am practicing the same lifestyle that I always have. I eat smart. I exercise regularly. I get plenty of sleep. I don’t do anything excessive.

When I completed my initial treatment I also did preventive maintenance chemotherapy. Over a two-year period, I went back every six months for a five-day course of rituxan. I did that for four cycles.

11. What do you think is the most important thing you did to combat your cancer?
In a word – I kept the right perspective. I handled it mentally as if it was a very treatable situation. I didn’t look at it with doom and gloom. I listened to what the doctor said, and he had a very optimistic outlook. I did some research, but I did the right research, and I asked the right questions of the right people – not just blind Internet searches that would bring back all kinds of ugly information. I educated myself a little and I looked down the barrel at it. I wasn’t going to beat myself up mentally when I saw that I could easily beat it physically.

12. Are you willing to have a newly diagnosed patient contact you?
Yes, I am happy to talk or email with anyone. They can contact me via my website ­– remissionman.com.

13. Brief Additional Narrative
When I received my official diagnosis of chronic lymphocytic leukemia (CLL), I struggled with the reality that fun-loving, life-grabbing, race-and-train-triathlon-loving me and the word cancer would now be used in the same sentence. Friends called me “Ironman.” “Chemoman” didn’t quite conjure up the same image.

Early on, I made the decision that I wanted to continue to train through and around my treatments. I wanted to send a strong message to the cancer that I was in charge. Fortunately, Dr. Shore and I reached a compromise on my exercise plan, and I was able to continue to train. I also was fortunate to go into remission early in my treatment, and have been in remission ever since.

I now have completed 10 Ironman triathlons. After my diagnosis and treatment, I was honored to pick up the moniker of “Remissionman.” Being diagnosed with leukemia has opened an entire new world for me. It connected me with Team in Training, and it has introduced me to amazing people. I have benefited greatly from them, and I hope they have benefited from me as well. I know I have been brought into this for a purpose.

 

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