Cancer Advocate Spotlight: Sherri Romanoski
Sherri Romanoski
7-year breast cancer survivor
Bag-It President
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Sherri Romanoski, a teacher, wife, and mother of three had a great life. Then, in 2000, she got the call from her doctor: a diagnosis of breast cancer. While undergoing three surgeries and chemo, Sherri learned to be a fierce advocate for herself – seeking out information, asking questions, and making decisions. But while she found plenty of information about her tumor and her treatment, learning how to cope with the whole experience remained “a black hole.”
“I came to the realization that this coping problem existed not only for me, but for other patients as well,” she says. “To me, information is key. About a year after treatment, I was talking to my oncologist. I kept telling him I want to do something – I just had to find out what it would be.”
Providing What’s Missing
Her doctor recommended a four-day “Life Beyond Cancer” retreat for cancer survivors that focused on community advocacy. “It was very healing. But also the message was loud and clear: Find out what is missing in your community and then fill it,” she says.
“I knew what was missing. I was getting information on my treatment and my tumor, but nothing on how to cope with all the quality of life issues. I wanted to help people get over that really bad hump when you get the diagnosis,” she says.
“I decided that there had to be something out there. I got on the Web and went to bookstores. But, I was pretty clueless on what information was reliable,” she remembers. She started to collect information from organizations such as the American Cancer Society and the National Coalition for Cancer Survivorship.”
A Dream Comes to Life
Sherri decided to pull out the most relevant information and put it into a tote bag to give to cancer patients free of charge. With the help of a friend – another teacher and cancer survivor she met while in treatment – they put together a team of doctors, nurses, and survivors to choose the best products. The result was BAG-IT™, a tote bag and binder that contains educational materials, including the NCCS Cancer Survival Toolbox®, that focus on issues such as nutrition, care planning, communicating with your doctors, and dealing with emotions, as well as hand-knitted caps for people going through chemo. Their BAG-IT bags are now available free to cancer patients at 50 clinics in Arizona. By May 2008 they had given out 10,000 bags.
“It was hard,” Sherri remembers of their first efforts.” You have to know that success is going to come in small increments.” Even convincing the office manager in the clinic where she was treated was a challenge, she says. “I spent hours talking to one office manager.”
Eventually they got one office to offer 16 bags. From there, the product spread by word of mouth and by the second year, clinics in Tucson and the surrounding area started buying into the concept.
Making a Difference
“They realized that helping people over this hump was a good idea and it made them look good as providers,” she says. “Even though the bag is for patients, we emphasized that this was a good tool for physicians, too. In the end it helps them out – their patients are better educated and ask better questions.”
What started out as self-advocacy to answer her own questions led to advocacy for others – and now it’s leading to system-wide change throughout the state. “I’m really excited,” she says because now oncology clinics around the state see the importance of addressing psychosocial issues as well as treatment issues. She also believes BAG-IT promotes self-advocacy: “Patients find out how to become part of the treatment team and they don’t feel so victimized.”
Taking part in community advocacy doesn’t have to mean starting your own non-profit or business, as Sherri is first to point out. “If someone’s already doing something wonderful and you can join them, do that first.”
Of her own experiences, she says, “It’s really been a journey for me. I just keep chipping away at it, so it never feels like that much, but when I look back I see we’ve done so much. No effort is too small.
Submitted by: Dora Martinez
October 13, 2009