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Multiple Myeloma Patient Story: Finding Hope After Diagnosis

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Published on October 12, 2020

Kenny Capps’ Story

Hear the first-hand stories of a multiple myeloma patient, including his initial thought process when he was diagnosed, how being diagnosed with cancer altered his outlook on life for the better, and how he began his mission of helping fellow blood cancer patients overcome challenges through education, movement, and awareness. This segment features Kenny Capps, myeloma survivor, patient advocate and founder of Throwing Bones for a Cure.


Running for My Life

One thousand, one hundred, seventy-five miles.

In 2018, I ran 1,175 miles in 54 days, zigzagging across North Carolina’s Mountains-to-Sea Trail (MST). From craggy peaks towering above the dense Pisgah National Forest to the ocean-sprayed dunes of the outer banks, I logged 22-23 miles — nearly a marathon — every day for almost two months. At times, I scaled heights of nearly 7,000 feet.

The year I ran across the MST, I found myself at a precipice where fear and frustration waited for me on the other side. A magical mixture of ignorance and stubbornness kept me fighting. I discovered that others living with cancer can also continue to live long and productive lives — that they, too, can notch enormous personal goals while staring down the face of an enemy that has touched most of us in some way.

In 2015, I was diagnosed with multiple myeloma, a type of blood cancer that affects plasma cells in the bone marrow. Healthy cells are crowded out by the cancerous ones, and often this leads to bone lesions and breaks. In my case, I was chock-full. Shortly after I was first diagnosed, I learned I had lesions throughout my bones that would require a bone marrow transplant using my own stem cells.

Coming to Terms with Multiple Myeloma

I have been an endurance athlete of questionable ability since 1984. I have cycled across the country, overcome ultramarathon distances and swum miles. For many like me, training is an opportunity to address each day’s challenges. It gives us a safe space for healthy reflection, meditation and exclusion of a disorganized world.

After my initial diagnosis, further inspection from a PET scan determined that myeloma had caused much more damage than had been originally assumed. I had two compression fractures in my spine. Bone lesions (holes) were discovered in my skull, collarbone, scapulas, sternum, ribs and a large one in my left hip. Primarily because of the hip lesion, my medical team insisted that I stop running. I immediately started infusion therapy to slow the bone loss and began chemotherapy to prepare my body for a bone marrow transplant with hopes that such a dramatic procedure could kick the cancer out of my body.

In August of that same year, I spent nearly five weeks in the hospital recovering from the transplant and preparing to attack the world with a newly minted immune system. While I didn’t achieve full remission, the bone marrow transplant was partially successful in that it gave my body time. It assuaged my health team’s immediate fears. Now it was time to find my wind.

I eased my way back into the sport in January 2016. Less than two years later, I was conquering one of the most imposing physical challenges of my life, and multiple myeloma wasn’t stopping me. It slowed me down, but it gave me a new appreciation for living and how to do it well. And why.

Live the life you want to live. Find hope and possibility in every mountain you try to climb. Just remember to stay on the path. Ask questions when you don’t know the way. When you find the right guides, trust in the process.

You have it in you. You can do this.

And even if you don’t plan on moving mountains, you can live an active and healthy lifestyle with cancer. In fact, those who maintain regular levels of activity will not only find themselves with more energy, but research has shown treatment is likely to work better for them as well. And while my symptoms are being managed by the best currently available drug treatments, blood cancer research produces new awareness and greater availability, and researchers are able to bring more and more treatment options to market.

My Mission Begins

In training for my run across the state of North Carolina, I discovered a mission to encourage, educate and inspire everyone living with blood cancers to stay healthy and active through treatment. Out of that mission came Throwing Bones, a non-profit organization changing the fate of blood cancer through fitness. Life doesn’t give us guarantees and we can’t really see the future. Sometimes you just have to throw those bones and let them ride.

I discovered that there was a disconnect between cancer treatment and a purposefully active, healthy lifestyle, and I wanted to help fix that. I wanted exercise to be part of treatment, not only as an afterthought once all the intense therapy had been attempted.

Throwing Bones works to educate others about exercise as a form of cancer therapy. Purposeful movement and coaching are part of the solution and it takes the collaboration of all healthcare professionals to place exercise, personal trainers, fitness coaches and physiology in the post-diagnosis treatment plan.

The name “Throwing Bones” came from my affinity for jam bands and the Grateful Dead dating back to my college days, and the age-old reference of throwing “bones” as dice. Throwing or rolling bones was not only an indicator of chance but also of taking the chance, in spite of the odds.

Looking Toward the Future

I know what it’s like to have cancer take away something near and dear. As I underwent the toughest treatments in 2015, I wondered about my future. I have met, come to love and ultimately lost friends suffering from cancer. I learned that it is part of loving and life, but the joys can overshadow the pain.

I didn’t get my old life back. My cancer isn’t gone. I have a new normal and an appreciation for what life is; what I’m capable of; how amazing the world can be. At one time I thought I was losing. I wasn’t. I just didn’t know what game I was playing.

By Kenny Capps

Transcript | Multiple Myeloma Patient Story: Finding Hope After Diagnosis

What Was Your Reaction to Being Diagnosed with Multiple Myeloma?

Kenny Capps: I think my first reaction is, as odd as it sounds, like going, "Oh, I just let my wife down." which is silly, I know. I did nothing. I didn't screw up. I didn't do anything wrong, but I made her make that noise and I didn't want her to make that noise.

Cancer was no gift in my life. And, again, I understand that there are learning opportunities, learning moments, times it forces you to slow down. I was certain, personally, and I can speak for my family too, we were all plenty broken without having to go through that.

And I have to say, I was lucky. My oncologist, one of the first things he said was, "We know what you have. Now it's time to get a second opinion, not as to whether you have it or not, but what to do.” Because this disease isn't... while it's common enough, it's not so common that there's a specialist in it in every town, city, county.

What Advice Do You Have for Fellow Multiple Myeloma Patients?

There is hope, even when it's scary. There's so much that, even in the brief five and a half years that I've had this disease, there is so much that has changed, so much that is better, so much that has increased as far as the mortality rate, responsiveness to different drugs, and the opportunity for trying different things. It's just not one, two, three, or four things. There's a lot. Doctors just don't have the resources or the tools to let every single one of them know exactly what they should try next. They just can't do it. They don't have time. So, you've got to advocate for yourself.

I feel like it robs me of, not so much time at the end of my life, it's the time every day. I want that back and that's a challenge. That's frustrating. I want it to stop doing that. I want to control that, like, "Look, you're already going to take some stuff that I didn't want you to take until the end. You took some stuff at the beginning. Stop taking away all the middle stuff because that's the good stuff. That's the gravy.” That's where I really should be focusing my energies and not stealing that time away from other people that care about me and want to hang with me and be with me and do things that have absolutely nothing to do with cancer.

 

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