Oregon’s Mary Gooze is full speed ahead in her quest to raise money and awareness for metastatic breast cancer, even taking her case to the nation’s capital.
On April 28, the cancer survivor and her husband, Rob, traveled to Washington, D.C., to meet with elected officials to “get the name ‘metastatic breast cancer’ on the tip of their tongues, so that they have at least heard of it.”
“We wanted to make sure that they supported more funding for the National Institutes of Health,” she said, noting that metastatic breast cancer is the only breast cancer that is lethal and has no known cure. “There’s an urgency to the message, and I think they got that. It was a productive day.”
In one long day that involved “a lot of walking back and forth” on Capitol Hill, the couple talked about the need for more research into metastatic breast cancer with Speaker of the House of Representatives Paul Ryan, U.S. Sen. Tammy Baldwin, U.S. Rep. Mark Pocan, and aides to U.S. Sen. Ron Johnson and U.S. Sen. Jeanne Shaheen of New Hampshire.
Gooze described the day as “incredible” and “productive.”
She told the representatives she hopes to have a National Cancer Institute database more accurately collect data on MBC, as the current one does not collect data specifically for metastatic breast cancer.
“We aren’t counted,” Gooze said. “They blend us in with everyone else, and so for research purposes, they don’t have an exact number.”
Most of the meetings with government officials lasted about 15 minutes, including “an excellent” meeting with Speaker Ryan.
“He was just very kind and sincere,” she said. “I had my little spiel in my head of what I was going to say, and he listened and shared that his mother-in-law died of metastatic breast cancer, so he has a personal connection with it.”
She said Baldwin was “very receptive to everything I said.”
“We were assured by everyone, even by Ron Johnson’s office, that healthcare is a top priority,” Gooze said. “It was an interesting bipartisan day.”
Gooze, 65, a mother of three adult children and a retired Oregon School District teacher, was diagnosed with breast cancer in January 2012. In the following nine months, she endured surgery, chemotherapy and radiation treatments.
Gooze hoped to be past the disease, but she learned two years ago the cancer had metastasized and spread to the bones in her hip. She then decided to spend her time raising awareness about the disease and raising money to help find a cure.
A former triathlete, Gooze gained some local notoriety last year when she swam more than 35 miles in 23 lakes throughout the country – including five in Dane County – in her campaign to shine a light on the disease and garner publicity in hopes of educating the public. She raised around $200,000, sending $109,000 to METAvivor, a national organization that funds stage IV breast cancer research, and nearly $90,000 to the American Cancer Society.
She said long-distance swimming takes her mind off the disease and strengthens her body. It also makes her feel like she’s taking charge of her situation.
“I think the swimming keeps me feeling well,” she said last week. “I push myself, but I know my limits.
“I’m going to keep doing this as long as I can,” she added. “It does make me feel better physically and mentally to have a goal and a focus to work on.”
Gooze said most people haven’t heard of metastatic breast cancer and aren’t aware that it’s different from breast cancer, which itself is not lethal.
Most people also don’t know that only 2 percent of funds raised for cancer research go for MBC, she said.
She hopes the publicity she generates from long-distance swimming can change the equation.
Gooze feels fine now and has “gotten through another year.”
“I am still kicking and swimming and ornery,” she said, with a laugh.
But she’s also aware that people diagnosed with MBC, on average, live three years.
She was diagnosed two-and-a-half years ago and is aware of the statistics.
“None of us knows the time we have left, but this just puts it in a different perspective and there is an end date,” she said. “We all know that, but with a terminal disease you’re more aware of it.
“I’ve had too many friends that are fine, and then the disease takes hold of them and it can be devastating very quickly.”