Never have I met two survivors with the same type of cancer, course of treatment, and story. People who haven?t been exposed to all the different faces of cancer usually don?t understand the limitless ways it can shape the patient, especially a young adult. There can be surgery, amputation, hair loss, infertility, weight loss, weight gain, vomiting, diarrhea, blisters on your feet, a mouthful of cold sores, memory loss, depression, anxiety, a busted bank account, all, some, or none of the above. So what is it that consistently draws cancer survivors and fighters together when they?ve experienced such different paths? It is the feeling we?ve all shared in the middle of the night when, even if a loved one is next to us, we find ourselves alone in a fog of existential uncertainty.
Such terrific uncertainty can shatter your confidence and leave you desperate and despondent. I lost my entire left leg to sarcoma and underwent various treatments and another surgery before the cancer was killed three years ago. Some aptly compare losing a limb to losing a loved one because your definition of self suddenly changes. They are right. I couldn’t stop dwelling on the vagueness of my identity. I started to become my own worst enemy until my two-wheeled savior arrived.
Three weeks after my surgery, my mom brought her old road bike to my house in Cape Cod along with a wind trainer. I remember my concentration sharpening with the prospects the bike offered. The first time I got on it, it hurt like hell, but it forced me to focus and provided a healthy escape to the present from the unrelenting hypothetical futures in my mind. The bike started to build my confidence. My friends heard about my new-found passion and chipped in to buy me a bike. In a few weeks I was cycling outdoors; in a few months I was logging some miles; last summer, four years after my amputation, I completed my first century ride.
In order to countervail the toll that the treatments took on my health and confidence, I had to take myself out of my comfort zone and embrace healthy risks. I wanted to encourage other fighters and survivors to do the same. Last year, with friends and family, I started the AKP Foundation which helps young adult cancer survivors and fighters in financial need pursue an active and adventurous lifestyle.
Most survivors, once they?ve paid their medicals bills, and have had to miss work, do not have the disposable income to pursue athletics, adventure or adaptive sports. I recognized this void as I was going through treatment. My wife and I were poor, but we had family and friends who provided me with a bike, ski equipment, and other means to challenge myself and reconnect with life. Not everyone has people in their lives who can offer this kind of support, and I was excited to jump at the opportunity to give back to the young adult cancer community.
AKP provides grants for individuals to purchase equipment as well as instruction by setting them up on an outfitted adventure. We recently awarded our first recipient, a foot amputee, a recumbent bike so he can fulfill a lifelong dream of biking from Washington to Alaska. Last week we hosted an all-expenses ski retreat in southern Vermont for a group of survivors. We are a very young charity but we?ve exceeded our expectations in our first year. We plan to have more retreats for young adult cancer survivors and will continue to select grant recipients quarterly.
Cancer forces us, especially as a young adult, to immediately redefine ourselves as individuals, usually to an extreme degree. Four years ago my horizon changed dramatically and I had to discover new adventures, passions, and stimulants in life. We have no other choice. We must dust off and refresh the will and determination to inspire and energize ourselves. We must get our hands dirty and reconnect with life at its roots. And, because of the bond that we share with other fighters and survivors–one that we never asked for, but one for which we will be forever grateful–we must keep this spark alive and burning inside every individual affected by the disease.
To learn more about the AKP Foundation please visit www.akpfoundation.org.
Always Keep Pedaling Foundation