A Patient’s Journey with GIST

I discovered my tumor by accident, shortly after taking custody of my two granddaughters. I was playing on the floor with them when one straddled my stomach and plopped down. The pain was unbelievable; I knew there was something very wrong. The many tests that followed were inconclusive, and my doctors thought it was a growth in my uterus so I was scheduled for a hysterectomy.

When I awoke from that surgery, I learned that the surgeon didn’t perform a hysterectomy, but instead called in an expert to remove a 17.5-cm tumor attached to my bowel that had burst on the operating table. Because of this, my focus was more on the miracle of having survived the ordeal than on my future. After I recovered, my doctor gave me the news that I had a rare cancer, called gastrointestinal stromal tumor (GIST).

That was May 2006, the start of my journey with GIST. Since then, I’ve had two recurrences and one surgery.

It was important for me to educate myself about GIST by speaking to my physicians and researching online. I went to a well-known cancer institute to get a second opinion and became an active member of The Life Raft Group and GIST Support International. These online support groups enabled me to speak with other “GISTers,” who could relate to my situation. Through these resources and discussions with GIST specialists, I’ve not only received knowledge, but also ideas, understanding, and crucial emotional support.

The compassion of my medical team has been a blessing. Twice, my oncologist has had to tell me that another tumor appeared on my computed tomography scan. Each time, I knew that he cared about me as a person. Knowing that my healthcare team is on this journey with me brings me peace of mind. No matter what the outcome, I’m not alone along this difficult path. This experience has also brought me closer to family and friends. We say “I love you” more often, but gratefully they don’t coddle me—or at least they try not to.

I’ve always known that today is the most important day of my life. If I spend time worrying about tomorrow, then I’ve wasted a portion of today. I now live with an urgency to make each “today” count. I have two granddaughters to think of. I took on the commitment and responsibility for their well-being and they are my treasure. I awe at who they’re becoming, and I make the most of my time with them.

Every day I marvel at the things I do that make a difference in others’ lives. Although I have stopped the inspirational speaking and training I had been doing as a profession for the past 24 years, I’m now coaching others and helping them develop their careers in that field. I am also writing my fourth book and continue to be active in my community by organizing charitable events and fundraisers.

I would advise others who are diagnosed with GIST to educate themselves about this disease. Develop a supportive network of family, friends, and online groups, and become partners with your medical team. Above all, live with an urgency to make each day meaningful. Focus your thoughts on the things you’re grateful for, that bring you joy, and that help you bring joy to others. Don’t worry about tomorrow. Do everything today that will make your tomorrows significant— that which matter most to you and those you love.