Committed to Community

285- Committed to CommunityOne ovarian cancer survivor shares her personal and public journey.

Dee Sparacio Hightstown, New Jersey Dee Sparacio is a scientist. She is also a wife, a mother, a grandmother, a teacher—and an ovarian cancer survivor. Among all her other titles, it is the scientist in Dee that often comes through as she describes her journey with cancer. As she discusses treatment and now advocacy, her analytical approach reflects her training as an engineer and her desire to understand the how and the why behind the diagnosis.

Originally diagnosed with Stage IIIB ovarian cancer in 2005, Dee conducted her own research to understand the diagnosis and her treatment plan. When she was approached to participate in a Phase I clinical trial that would add selenium to her chemotherapy regimen, she investigated that too. “I read the trial protocol and the informed consent papers and then reached out to the librarian at my cancer center for information regarding selenium use as a cancer treatment,” Dee says. Her thoughtful, methodical approach led to her decision to join the trial: “I knew that as a Phase I trial the researchers were looking at dose level, but with side effects from the drug being well within what I was willing to accept, I decided to participate.” After undergoing surgery and nine cycles of chemotherapy, Dee was cancerfree.

In 2006, having Completed treatment, Dee attended the LiveSTRONG® Survivors’ Summit in Austin, Texas—an event that would launch her mission as an advocate. “I came home empowered to make a difference,” she says. “I began to volunteer with different organizations and realized that people would connect to my mission to raise awareness of ovarian cancer and funds for research if they knew my story.”

This realization that her personal experience could be put to use for the greater good was transformative, and Dee quickly got to work. With the help of her gynecologic oncologist and the social work department at her cancer center, Dee founded an in-person support group for women with gynecologic cancers—and quickly experienced the benefit personally. “It was invaluable for me to meet others diagnosed with ovarian cancer,” she says. “They ‘got’ what I was dealing with: being bald, having numb toes, and the joys of ‘chemo brain.’”

As the bonds within the support group grew, Dee’s commitment to helping other patients also expanded, and in December 2007 she launched a personal blog (womenofteal.blogspot.com), detailing her experience and discussing topics of interest to the ovarian cancer community. “My goal initially was to reach out to other women in New Jersey by sharing my journey with ovarian cancer and to share information about local organizations that raise awareness and funds for research,” Dee says. From there she recognized the benefit her scientific background could have in helping other patients understand the clinical aspect of their care, and her posts expanded to include information about clinical trials and research studies. In demystifying some of the more complex scientific data, Dee strove to expand her readers’ knowledge and empower them to make informed decisions about their care.

In 2008, fully engrossed in her blog and other advocacy efforts, Dee faced a recurrence of ovarian cancer. She again underwent surgery and chemotherapy, detailing her experience through her blog as she progressed through treatment, continuing to participate in the support group she had helped to found, and connecting with a broader group of patients and professionals through social media chats—all of which provided essential support. “The chats and support group helped me overcome that feeling of being alone,” she says. In May 2009 she was again pronounced cancerfree.

Since her second diagnosis, Dee has furthered her advocacy efforts as one of the founding members of a monthly Twitter chat dedicated to gynecologic cancer topics (#gyncsm, occurring the second Wednesday of each month at 9 p.m. EST). In addition to serving as a co-moderator of the #gyncsm chat, she is a member of Hunterdon & Mercer County Regional Chronic Disease Coalition, a Research Advocacy Network Focus on Research Scholar, and a Society of Gynecologic Oncology patient blogger.

In all she does to help women understand their diagnosis and current research and to provide support, Dee is driven by a commitment to put her personal experience to work on behalf of other survivors. “The longer I stay disease-free, the more vocal I have become,” she says. “I want to share information about the disease with others by volunteering, writing my blog, and speaking to honor the women who are on this journey with me, to honor those whose lives were lost because of ovarian cancer, and to support those newly diagnosed with the disease.”

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