Living Well With a Rare Cancer

In July 2020 — when public masking, Zoom weddings, and virtual birthday parties were very much still the norm — I found out I had stage 4 rare cancer.  

I felt a small lump in my abdomen, went to a doctor, and then got an ultrasound, and finally a CT scan. It turned out to be a lot more than just a lump. I was quickly scheduled for surgery to remove a 27-centimeter tumor, all of my reproductive organs, including my ovaries, as well as parts of my liver, bladder, and intestines.  

Two days later, I was diagnosed with stage 4 gastrointestinal stromal tumor (GIST), a type of soft-tissue sarcoma. 

A few weeks later, I saw an oncologist near our home in the Washington, D.C., area. It was the first time my husband, Jimmy, was allowed to come to an appointment with me because of the COVID-19 pandemic. We were feeling cautiously optimistic, but left that appointment defeated and stunned by what few options there seemed to be for treating my rare cancer.  

I thought about my two young daughters, 3 and 1 at the time, and how I needed to be there for them. I was determined to find a more hopeful path forward.  

That determination brought me to Memorial Sloan Kettering Cancer Center (MSK) for a second opinion, and in October 2020, my life changed. 

After months of sadness and fear, I left MSK feeling happy, hopeful, and even joyful.  

Everyone at MSK made me feel welcome and calm, from the young woman at the front desk whose kind smile reassured me as my voice shook to the doctor who told me that not only was there a drug I could start on right away but also that if the drug ever stopped working, research would uncover something else for me to try by the time that happened.  

That drug, imatinib (Gleevec®), is why I am not only living but living well today. Years after my stage 4 rare cancer diagnosis, I get to continue doing things I love, like being a mom, wife, runner, and lawyer, and talking endlessly about politics and romance novels. 

I also get to give back. While I was at MSK, I learned about Cycle for Survival — an amazing community that raises money exclusively for rare cancer research at MSK and comes together at stationary-cycling events across the country each year. I started my team, JessGetsTheGIST, to ride with my friends and family and support this lifesaving cause because people with rare cancers too often don’t have the same experience as me.

In an incredibly emotional full-circle moment, at a 2024 ride in New York City, I got to meet Charles Sawyers, MD, Marie-Josée Kravis and Henry R. Kravis Chair in Human Oncology and Pathogenesis, who helped develop imatinib more than 20 years ago, and who now leads the Human Oncology and Pathogenesis Program (HOPP) at MSK. When imatinib was first approved, it was game-changing not only because of its effectiveness but also because it paved the way for more targeted cancer treatments.  

Today, with support from Cycle for Survival, Dr. Sawyers and HOPP scientists are building on the success of imatinib to develop new and better personalized approaches to treating rare cancers like GIST, and many others. In 2022, Cycle for Survival funds helped HOPP researchers discover that combining imatinib with another drug called binimetinib (Mektovi®) was effective for GIST patients who don’t respond to imatinib alone.

This is just one of the many advances that Cycle for Survival has helped accomplish, and why I’m so grateful to this community. Every person facing a rare cancer should have the opportunity to live well with their disease, and the Cycle for Survival community can make sure that happens.  

Thank you for signing up to ride; for calling, emailing, and texting your friends to donate; and for believing in the progress that we can achieve together.