Finding My Greater Purpose Through Patient Advocacy

Recently while speaking at a cancer survivorship conference, I mentioned in my prepared remarks that I had been a patient advocate for individuals with cancer for over thirty years. Several younger audience members smiled wide-eyed when I mentioned this, and I am pretty sure they realized that I’d been advocating for patients with cancer since before they were born.

As an eternal optimist with a glass half-full personality, I realized immediately that while I may have been slightly older than some attendees at the conference, my experience and lessons learned from decades of advocacy work could provide insight and perspective for the next generation of cancer advocates.

My advocacy work began when I was just 13 years old; my father received a diagnosis of colon cancer and passed away from the disease while in the prime of his life. At this time, during the 1970s, patients had very few treatment options and the role of a patient advocate had yet to be defined. I remember trying to help my father in the best way I knew how: by trying to make sure he was comfortable, taking his medications and helping the hospital nurses as they attended to his needs. Although I was too young to realize it at the time, I was learning how to become a patient advocate.

I was in college when my mother also received the devastating diagnosis of colon cancer. Understanding and advocating for my father just a few years earlier, my mother and I immediately knew we needed to take action. I took a leave of absence from college and came home to be with my mother. Together we met with surgeons and oncologists looking for treatments — but again, in the 1980s there were few options available. Sadly, my mother passed from the disease just nine months after receiving her diagnosis.

Losing both my parents when I was so young led me to what would become my life’s purpose. Advocating for patients with cancer became my motivation and my mission. It wasn’t long before friends, relatives and friends of friends began contacting me when a loved one received a cancer diagnosis. I began meeting and visiting patients while they were in the hospital and oncology center, speaking with health care professionals on their behalf, developing meaningful relationships with family members and caregivers and even researching medical and disability insurance options so patients wouldn’t have to spend their valuable time worrying about how they were going to pay their bills. Over the years I’ve been honored and humbled to work with thousands of patients with cancer and their families, working for national cancer advocacy organizations and developing patient and caregiver educational and support programs.

I became a patient advocate to help improve the quality of life for patients with cancer and to be their voice amid a devastating diagnosis. I never thought patient advocacy would be my life’s path, but three decades later I still can’t imagine doing anything else. I advocate every day in memory and honor of my parents, and every day continues to turn my pain into my purpose.