At Truveta, we give our team members the opportunity to share their stories and add a human perspective to the work we do every day. We often share awareness and prevention days to encourage everyone to remember that there are names and faces behind so much of the data we’re de-identifying and analyzing in our platform. Each awareness day also serves as a reminder to be empathetic and caring as people are learning more and more about how best to take care of themselves in uncertain times.
September is Ovarian Cancer Awareness Month. The American Cancer Society estimates that this year, over 19,000 people will receive a new diagnosis of ovarian cancer. It accounts for more deaths than any other cancer of the female reproductive system.
We spoke to Nicole Shema, Communications Consultant at Truveta, about her aunt Sam who passed away of ovarian cancer in 2014.
What would you like to share about your aunt?
Her name is actually Sarah. She was the baby of the family, the youngest of five. Everyone called her Sam, a nickname after Samantha, the character in Bewitched, because she loved that show. My daughter’s middle name is Sarah. I would have named my daughter after her even if she hadn’t passed away. She would have loved to meet my kids.
She was a biostatistician. She worked at St. Jude’s Children’s Hospital, that’s where she met her partner, and worked at a number of other healthcare and research institutions. She was young. She was in her mid-40s when she was diagnosed, and she fought cancer for around 3.5 years. She went into remission, and it came back.
She was so active. She did triathlons and half-marathons, and every time she finished a round of chemo, she would do some type of race to celebrate. She had “Team Sarah” shirts, and she had a group of friends, a crew that did these races and events together. “Team Sarah” also supported The Clearity Foundation, an advocacy organization, raising money while she was fighting cancer. While she was fighting ovarian cancer, she did multiple charity events to raise awareness. She was very passionate about it, even when she was still fighting the disease.
How did community support impact her life?
I think it was huge. She had a super tight-knit group and they supported her every step of the way. It meant everything. She lived in Redwood City with her partner and several pets, and she was always the caretaker of the group. Sam was a prolific cook; she would make elaborate multi-course meals and she then had to learn how to be the one to be cared for.
Who was she to you as a person when you were young?
I’m an only child, and the only grandchild. Aunt Sam was the closest person in my family to me besides my parents. She was someone I was just drawn to. She was so funny, smart, sarcastic. We had a special relationship. She wrote and dedicated a book to me when I was little, something I still have. My first solo flight was to visit her, around age 12. She was obsessed with food; she always took me to nice restaurants and made fancy meals. When I got older, she took me wine tasting and taught me how to like wine. She had such a strong personality that even now — she’s been gone almost 10 years — I still know what she would say, or advice she would give me in certain situations.
What does Truveta’s vision — saving lives with data — mean to you?
The connection with Truveta has crossed my mind several times. I would have given anything for research that would have saved my aunt’s life. Ovarian cancer is not the most well understood cancer and it is hard to detect. Oftentimes, by the time you realize what you have, it’s pretty far progressed. I wish we had simple way to screen people for all types of cancer on a regular basis.
Whether it’s ovarian cancer, another type of cancer, a cardiac issue, anything, if we can help research that enables people to save lives, that’s really powerful. I don’t know what can be more motivating than that.
The Clearity Foundation helps ovarian cancer patients and their physicians make better-informed treatment decisions, based on molecular profiling of tumors. The Clearity team includes scientists, physicians, and volunteers who feel passionately that the paradigm for ovarian cancer treatment needs to change from a trial-and-error approach to one that that individualizes therapy selection based on each patient’s tumor molecular profile. Visit The Clearity Foundation to learn more about their mission and to make a donation.
The American Cancer Society offers more information about ovarian cancer, risk factors, early detection, and more.
Truveta is a collective of U.S. health systems with a shared vision of saving lives with data. Through partnerships with 24 innovative health system members, Truveta offers innovative solutions to help researchers find cures faster, empower every clinician to be an expert, and help families make the most informed decisions about their care. Truveta’s data is licensed for healthcare research, not targeted advertising. Follow us on LinkedIn and Twitter for updates.