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Moving Forward With Myeloma- Meet Myeloma Coach Kenny Capps
Moving Forward With Myeloma- Meet Myeloma Coach Kenny Capps image
Moving Forward With Myeloma- Meet Myeloma Coach Kenny Capps
Posted Sep 09, 2020

How Did I Find Myself Here?

Towards the end of 2014, I was just another middle-aged weekend athlete with marginal ability, even though I had been competing in endurance sports since I was 13 years old.

I often trained by running 30-40 miles a week on roads and trails around my hometown of Asheville, North Carolina. The Mount Mitchell 40-mile Challenge was scheduled for the end of February 2015, and I was actually considering an attempt at running the Boston Marathon in 2016 if I could qualify.

In October of 2014, my wheels started to come off. I first thought  that I had the flu. Symptoms included severe headaches, exhaustion, and back pain. Some of these could be discounted as being related to my overactive lifestyle, but not all.

I went to my primary care doctor for a blood test. The flu test was negative, but I was alarmingly anemic - surprising for someone otherwise healthy, active and nutrition-aware. More tests were ordered.

On Christmas Eve 2014, the doctor called me to let me know that my results showed that I needed to meet with an expert. A mid-January appointment was scheduled.

By the middle of January, when I walked into Dr. Vashist’s office, I actually felt pretty good. My headaches had mostly gone away, and I was back to running a lot of miles. But when the doctor told me that I had blood cancer, my life changed. My goals changed. What I thought about the world changed. I had cancer, and had to figure out what to do next.

I quickly had two more opinions by leading oncologists at Emory University Hospital in Atlanta and at Duke Cancer Center, but the end result was the same. I had multiple myeloma. I just had a little more clarity on how aggressive and how advanced it was.

I had multiple lesions or holes through the bones in my body. That included compression fractures in my spine and lesions in my skull, scapula, collar bone and a pretty big one in my hip.

I was directed to stop running immediately. I cried. Then I composed myself and began treatment in preparation for a bone marrow transplant. That would happen as soon as my body was ready.

In the Spring of 2015, 80% of my plasma was taken up by cancer and despite the doctor's admonitions not to Google this disease, I spent several sleepless nights reading with horror and dread that I might only have 3 to 5 years to live.

The treatment was inconvenient and a little painful at first, but mostly tolerable. After a couple of months, the medication made my hands shake so much that I couldn’t use the touch screens at the grocery store checkout aisles. I had to hand my smartphone to somebody else if I wanted to respond to a text message.

In August of 2015, I had an autologous bone marrow transplant. My immune system was destroyed and reset. After four and a half weeks at the hospital in Atlanta, even walking down a flight of stairs left me winded and out of breath. I was a long way from marathon ready.

The cancer didn't go away completely, but it was pushed back and I received a little more time. This cancer became manageable and by the end of the year, I started walking a little bit, jogging a little bit, and gained strength and stamina within a couple of months that I was sure I wouldn’t ever feel again. At the end of January 2016 I ran the Hot Chocolate 10k along the French Broad River in Asheville. That race ranked as my slowest 6.2 running miles and afterwards I barfed until I dry heaved, but I loved every painful step.

By the end of 2016 I had run 16 races, including 4 half marathons and the Shut-in Ridge Trail Run which is an 18-mile point-to-point race with over 5,000 feet of vertical gain. I had never run slower prior to that year. My training miles were half what they used to be. Each time I went into the woods, I experienced a lot more hiking than running, and spent a lot more time doing it than I used to. Quality time not miles became my focus, and runners in the middle and back of the pack were actually a lot more fun than those up front. I was never going to be a podium guy anyway. I just never knew what I was missing.

During my December 2016 reflection, I realized that although it had been almost 2 years since my initial diagnosis, I would not have come back as fast as I had, had I not focused so much attention on being healthy and active before I knew I was sick, during my treatment, and after the bone marrow transplant.

I frequently heard from healthcare providers that I needed to “take it easy” and “take care of myself”, without really understanding what that meant and why. I get it now, but that’s only because I was already doing it.

There is a gap when it comes to addressing patient health and well-being. So many people with chronic and even terminal conditions don’t know what I had discovered by accident: in order to have the best life - truly, the best life - you have to keep moving forward.

The reality is, that staying healthy and active contributes to increased quality of life. Purposeful physical activity allows for increased:

  1. Strength
  2. Endurance
  3. Pain tolerance
  4. Energy level
  5. Maximizing the return that you can get from your treatment
  6. The psychological benefit of just doing something - even if it’s just to RAGE

My experience with cancer, coaching and training was a platform - a springboard to not only inspire, or lead by example, but also a way to pay it forward.  I  founded Throwing Bones for a Cure, to encourage, inspire, and activate individuals living with cancer, to stay healthy and active during and after treatment

In 2018 I ran for 54 days straight from the Outer Banks across the state of North Carolina, to the border of Tennessee, averaging nearly 23 miles a day and accumulating nearly 1200 miles. I am still moving.

Kenny is  the founder and Executive Director of Throwing Bones for a Cure, Inc.

He runs to prove to himself that he can do it and to encourage and inspire others with cancer to keep moving forward.

Kenny is a Myeloma Coach and offers support, encouragement and resources to others with myeloma.  If you would like to connect with Kenny or another Myeloma Coach go to:  www.myelomacoach.org

 

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The author Rozalynn Hite

about the author
Rozalynn Hite

Rozalynn Hite is the Myeloma Coach Director and wife of myeloma patient Richard Hite. Rozalynn is an occupational therapist and mother of three beautiful children.

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