Staying Alive: Virginia Hetrick and caBIG
Sometimes all it takes to bring hope to hundreds of people is to stay alive after a grim cancer prognosis. That’s what Virginia Hetrick has been doing for seventeen years. In 1998, when I joined an on-line support group for Inflammatory Breast Cancer (IBC), Virginia, who was seven years out from diagnosis, was the longest-term survivor in the group.
In my years on the mailing list, I’ve seen people introduce themselves or their loved one as newly diagnosed with IBC and have read their words of despair and fear. Then they hear from Virginia and realize that if she could live seven, ten, seventeen years, maybe they can too.
Virginia, a native of Port Townsend, Washington, was living in Southern California where she managed the supercomputing support group at UCLA when she found out she had IBC. Her staging tests also revealed that she was diabetic and had high blood pressure and cholesterol. A year later she was diagnosed with endometrial cancer. Fortunately, she lived near some of the best medical centers in the world, and she learned the value of support groups. Virginia used her computer expertise to set up a support website in the early days of health information on-line.
I’ve worked with Virginia for years as a list monitor, but we didn’t meet face to face until recently. Virginia loves to camp and visit national parks. When she saw she had conferences in Washington, DC and Memphis on her schedule, she decided to drive across country and visit some more parks between meetings. My husband and I met her for breakfast at an IHOP before she headed off to Carl Sandberg’s mountain home, now a national historic site in Flat Rock, NC, not too far from where I live.
Although I’ve never seen a picture of her, I recognized Virginia right away. She was the woman in the baseball camp and soft T-shirt scattered with wild flowers from Victoria, Canada. The only thing that surprised me was that I had expected her to be tall, and she is shorter than my own 5’3”.
The quick wit that comes through on the computer was present as we talked about her travels, politics, good restaurants, families, and, oh yes, cancer. Virginia is combining her computer expertise with her knowledge of cancer research and her experience as a cancer patient by working on an NIH project called caBIG (cancer Biomedical Informatics Grid). She explains, “The purpose is to get the data in clinical trials organized more quickly, publicized more widely so as to get patients accrued more quickly, get the data collected and analyzed sooner, and get the results peer-reviewed and distributed more rapidly.”
As more and more cancer research is being done, huge volumes of data are being generated, but researchers haven’t had an easy way to communicate what they are learning with each other. According to the caBIG website, “Historically, there has been no one approach to integrate the data tools used by research, the software that supports clinical trials, and the reporting tools that make sense of it all.”
Those of us who have encountered difficulties transferring information from the software we use at home to our work computers have a hint of how complicated this would be for research data. The purpose of caBIG is to come up with standards for software and reports that will let everyone from researchers to doctors to patients communicate.
Virginia has done more than survive despite two bouts with cancer and so many other health challenges. She has touched lives through face-to-face support groups in California, reached out to IBC patients all over the world at www.ibcsupport.org, and used her computer expertise to fight cancer.
Those who know Virginia via computer know her as Dr. Juice. Virginia says she got this nickname when a professor at the university where she was teaching objected to students calling her by her first name. Somehow Dr. VH (for her initials) morphed into Dr. V8 and from there into Dr. Juice. But I think the moniker “Dr. Juice” perfectly fits the energy and vitality that Virginia pours into everything she does. She’s staying alive and so much more.