Published on January 29, 2019
I’ve been on an interesting journey that will soon see its 10th anniversary. Almost 10 years ago, I was diagnosed with chronic lymphocytic leukemia (CLL) and, to sum it up, I went from diagnosis to watch and wait - yeah, it’s really watch and worry. Initially, the first doctor told me that the survival rate was about six years and I was not in a good state of mind, however, the second doctor, a CLL specialist, calmed me down and assured me that I was going to die with CLL, not from it. Then, after a clinical trial, a deep minimal residual disease (MRD) negative remission became my new normal.
I became active and for the first time in my life started exercising regularly, embracing a speed walking regimen that had me increasing pace and distance over the course of several years. Then I started making excuses - elbow surgery gave me a reason to ignore my speed walking routine, so did an intensifying level of lethargy that I would soon learn was the result of a relapse in July 2018, which actually provided the spark I needed to get back into speed walking. I figured if I’m going to be tired, I might as well be tired and have accomplished something. I’m going to be tired and have knocked out a bunch of miles.
A bunch of miles started to grow. I got really ambitious. There was something that I always wanted to accomplish after starting this whole exercise thing. A grand goal. On Monday morning, the November 19, 2018, I parked my truck on the street and lined up a bunch of water bottles on the bumper. I started walking my normal 10K circuit in my neighborhood. Not too fast, not too slow. The neighborhood patrol officer waved at me, as he always does, and instead of stopping at 10K (which was where my truck was parked), I grabbed a bottle of water and kept going. Along the way I added a few extra streets to the route and continued the laps. I picked up a bottle of water each time I passed my truck, and 6 hours, 23 minutes and 22 seconds later I finished 26.21 miles. My first marathon at an average pace of 14:38 minutes per mile. Boom. This former couch potato, living with relapsed CLL, had just knocked out a marathon. Not bad, eh?
After resting up a bit, I started working on new speed walking goals. In my mind, it was always the plan to keep pushing and stretching and, now that I had the distance thing nailed down, it was time to work on the speed thing. I had no intention of running, but I knew I could walk faster. I stayed focused and got my morning 10Ks down to under a 14 minutes per mile pace. I decided that my new goal was to do seven consecutive 10Ks in one week, all under 14 minutes a mile. I started out on December 16 with determination and finished the first 10K at 13:50 per mile. A clean walk, no pain. I woke up each following morning with focus and knocked out four more 10Ks, actually bringing my average down to 13:40 per mile. I started out the Friday 10K in the same mode, but about halfway through it I knew that something wasn’t right. I kept at it anyway and finished that 10K at 14 minutes per mile with a lot of leg soreness. I set off the next morning at my goal pace and came to a complete stop after a little over a mile. I called my daughter to come get me. There was no way that I was going to achieve my goal.
This was the very first time that I experienced failure in my exercise routine. I had always been able to establish a goal and go out and get it. I was disappointed (and very sore). I stayed in a bit of a funk for a few days and then went back to speed walking for short distances at a slow pace. It took me a bit to realize that I had not trained properly for my goal. It’s doable, just not in the way that I had attacked it. Failure, delivered just before Christmas, turned out to be a great gift. I don’t always have all the answers and sometimes I am too proud to ask for help, but now I’ve taken a step back and relaxed.
I’ll heal up from what I did to myself and get back to working on my stretch goal while embracing a sensible and proper training regimen to reach it. I can do it. I just needed some expert guidance to do it in a reasonable way. Failure gave me humility. Failure made the goal more focused. Now, I have a plan and I’m going to go get it, even if I fail along the way. I cannot help but think that this is how the CLL researchers operate in developing treatments for all of us dealing with this cancer.
Every single treatment mode being studied has high hopes and grand goals; not all of them will succeed and many of them will fail. That failure is part of the process because knowing what doesn’t work guides us to what does. I head back to my CLL specialist in three weeks. My numbers will very likely be elevated, and we’ll acknowledge my growing lymph nodes. I’ll fess up to the increasing fatigue level and the beginnings of night sweats. I’ll confirm that I had not one, but two flu shots, spaced out five weeks apart. I’ll brag about my accomplishments and failure with my speed walking. We’ll talk about good wine. Then, we’ll discuss what new treatment modes look most promising for my particular flavor of CLL (trisomy 12, mutated, relapsed). Promising means that we’ve already put aside the stuff that has failed. The researchers, clinicians and experts have refocused their efforts. They have stretch goals and so do I. I want to go farther and faster. They want me to do the same, just without CLL.
- Jeff Folloder, Patient Power Host
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical adviceor care from your own doctor. That’s how you’ll get care that’s most appropriate for you.