A few words about Jody Schoger

JSchoger2Our friend and colleague Jody Schoger died on May 18th at age 61 from metastatic breast cancer. She learned of her recurrence in April of 2013, following a 15-year remission. The news was shocking and devastating. But Jody, ever the rational and reflective patient advocate, shared her thoughts on the only ‘good’ way to cope with this new reality, one that provides you and your family with the best possible life.

In helping patients to create a best possible life, Jody was relentlessly committed to getting evidence-based information to those who want to be engaged in their medical treatment. She believed that to make good medical decisions we need to understand our diagnoses and treatment recommendations, and the potential risks and side effects that go along with them. She also knew that, honestly, not everyone wants to become a medical expert to do so.

In her drive to assist cancer patients in finding community, compassion, and evidence-based information about their diagnoses and treatments, Jody, along with Alicia Staley, co-founded the Breast Cancer Social Media (#BCSM) Community, a volunteer organization that began in 2011 as a conversation on twitter. The on-line community started with a simple question – could social media be used to unite, educate, and empower those affected by breast cancer? The answer was yes.

In an essay Jody wrote for the Breast Cancer Consortium about #BCSM, she outlined some of the key characteristics of this unique virtual community.

  • Participants. #BCSM is one of the few health care chats to have a steady and supportive base of physicians, including medical oncologists, radiologists and surgeons.
  • Evidence-based. The moderating team includes a board certified breast surgeon, and “recaps” of clinical conferences including ASCO, ASBrS (American Society of Breast Surgeons) and SABCS, the San Antonio Breast Cancer Symposium are becoming a regular feature.
  • Transparency. The moderators are volunteers. #BCSM is self-funded. Other breast cancer-related tweet chats, sponsored by Genentech and GEHealthcare, are largely promotional. The #BCSM culture discourages “blatant self promotion.”
  • Survivors. The survivors who participate are honest, supportive and caring, even when they disagree. They find the best in each other and celebrate that quality.

Friend and cancer survivor Nancy Stordahl remembers an empowering tweet from Jody:

“Cancer isn’t a before and after event. It’s part of the continuum that is your life.”

Those words also held true for BCC member Lani Horn, who met Jody when she was going through treatment. Jody’s invitation to a Life After Cancer Retreat in Austin, TX, gave Lani hope during the last of her chemotherapy infusions. Lani continues, “Jody knew the power of sharing, of listening, of having friends to laugh with when you were enduring your own personal hell.”

Jody Schoger embodied the belief that learning evolves in a trusted environment where all are warmly welcomed. Her kindheartedness was palpable.

Over the six years that blogger Stacey Staub Sypko knew Jody in social media, she experienced her “laser-like ability to discover what mattered most” to people. After Stacy’s dog Goliath died, Jody cried saying, “Goliath – in his name and bearing – enriched all of us. He went beyond your family into our hearts, too.” BCSM participant, Beth Gainer, said that when she had a medical scare a few years ago, the first thing Jody did during that week’s tweetchat was to ask how the oncology appointment went. For BCC member Grazia de Michele, Jody helped to lift the isolation she felt after her diagnosis, empowering her to an extent that was difficult to describe.


Deanna Attai, Alicia Staley and Jody Schoger

A study published in 2015 in the Journal of Medical Internet Research analyzed #BCSM’s potential as a social media driven catalyst for improved “peer-to-peer” health care. Co-authored by, among others, #BCSM moderators Deanna Attai, Alicia Staley and Jody Schoger, survey results showed that participation in #BCSM increased patients’ perceived knowledge and decreased their level of anxiety.

One of reasons the on-line breast cancer community is so powerful is that in addition to the information it provides, participants frequently have a chance to move from the digital world into face-to-face interaction. BCC member Kathi Kolb remembers sharing a hotel room with Jody at a conference in 2011 in Washington, D.C.

“We sat up each night, too late, of course, talking about our lives, our experiences with breast cancer, our hopes for true awareness, our joys, and our struggles with getting some normal into our lives in the wake of treatment and its aftermath. Jody had, at that time, finished treatment several years before, while I was still in the throes of overwhelming post-treatment fatigue.

“It does get better,” Jody said, “eventually.”

“Promise?” I said, laughing.

“Absolutely!” she said, smiling. “And if not, there’s always swearing. And pie.”

In her work with the cancer community, Jody’s supportive and enlightened approach to advocacy helped to guide people through a medical labyrinth that easily overwhelms and too often over-promises. Katie Ford Hall writes:

“One of the greatest gifts Jody gave me was a reminder to keep perspective. Imagine going through what you’re going through, she’d say, if you were alone, poor, disenfranchised, uninsured, shut out of the health care system, and living in a third world country.”

Jody Schoger indeed had perspective. It was sound and honest. She announced once, “I’m mad as hell that science has been messing with this my entire lifetime and we aren’t even close. Another generation is passing, and we are still dying from breast cancer. To this day.”

Dearest Jody, you leave us in gratitude for what you’ve done and who you’ve been. We’re mad as hell, too.

A celebration of life is planned for Saturday, May 28, 2016, at 2:00 PM at the Woodlands Community Presbyterian Church, 4881 West Panther Creek Dr., The Woodlands, Texas, 77381. The service will be followed by a reception in Fellowship Hall. The family requests that contributions in Jody’s name be directed to the Woodlands Community Presbyterian Church for mission work, or M D Anderson Advanced Breast Cancer Center of Excellence (by writing a check to MD Anderson and putting on the memo line, “for Advanced Breast Cancer Center of Excellence (ABC COE).”
DC 2011

A few advocates gathered in Washington, D.C. (2011)

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