By LRG Contributor – Santy DiSabatino – U.S. GIST Mentor Director
When I was first diagnosed with GIST it was as if my life stood still. I never expected I would get cancer. My parents lived well into their 90’s. It was the way I was told by a physician at the time that also alarmed me. There was no “bedside” manner. I called my wife after I Googled “What is a GIST?” and told her. But something was still missing. I so wanted to speak with someone who shared the first shock of finding out to hopefully help me relieve some of my stress. I wasn’t looking for a doctor to give me all the medical specifics. I was looking for someone who could talk me down with positive encouragement, offer true and good advice, and make sure I was doing everything possible to insure I had a plan moving forward.
I needed the support of a future friend I could always turn to at any time throughout my GIST journey. I quickly found out no such person existed. When I was approached by The Life Raft Group to volunteer in any capacity, I felt there was one way I could help “give back.” What I did remember was the missing piece in the puzzle. The need for newly diagnosed people, like me, to have a mentor they could talk to and help and support them.
Our first group of GIST Mentors at a training session in 2019 at LRG Headquarters in NJ: Left to right: Rob Taylor, Julie Durkee, Carolyn DeWalt, Eric Lindberg, Santy DiSabatino, Kay Stolzer, and Marlene Nei
The volunteer LRG GIST Mentor program began in October 2019 and it has grown tremendously. Life Raft Group mentors have helped over 150 people, both patients and caregivers through their GIST journeys. What does it mean to me to be a mentor? For me, it means helping someone who will need support and advice as they begin to navigate their journey. To make sure the mentee knows I am always there for them whenever they just need a friend to talk to or for guidance. To check on their well-being and to keep in touch.
Currently, we have 15 patient and three caregiver mentors. We are desperately in need of more. Unfortunately, there are new people being diagnosed weekly with GIST and wanting help, encouragement, support and advice. As mentors we also need help, support, encouragement, and advice. We take care of that by having a monthly virtual meeting where we just gather to “shoot the breeze”, laugh, and talk about our lives and families. We are there to help each other with advice and support.
Please consider becoming a mentor. There is so much satisfaction to be gained by helping a fellow GISTer with their journey. Thank you and I hope to someday in the near future to welcome you into the mentor group!