Courtesy KellyLynne PhotographyThere are many ways to cope with a diagnosis of breast cancer. When Susan Rosen found out she had stage IV metastatic breast cancer (MBC), her daughter Michaela and son Max suggested she start a blog. Susan knew she didn’t want a “cutesy name with pink or boobs in it,” she says. Instead, her mind went to mermaids. “Women with breast cancer share a lot of qualities with mermaids,” the 52-year-old from Franklin, Massachusetts says. “For instance, we possess feminine energy and power. And I thought, ‘You know, that’s a good name for a blog.'”
As she wrote in her first entry on Let Us Be Mermaids:
We have no fear of death.
We have a great fear of not living our lives with appreciation.
We may have bodily changes but we are still beautiful.”
To her surprise, she found that writing about life with an incurable disease was not only therapeutic for her, but it was also incredibly helpful to others. “I started hearing from people all over the world—emails and messages thanking me for letting them know they are not alone. My purpose in life is to give information and hope to patients and caregivers.”
Moved by her story, cancer survivor and photographer Kelly Burke drove from North Carolina to Massachusetts in September to transform Susan into a mermaid and capture the results in a series of powerful photos. “I was a little like, ‘Oh gosh, I’m 52, am I going to look alright?” Susan says with a laugh. “But Kelly is wonderful. She said, ‘Don’t worry about anything, just get a black bikini top and we’ll work with you.’ The pictures look awesome.”
Courtesy KellyLynne PhotographySusan’s real purpose in posing—to shine a much-needed light on metastatic breast cancer. More than 150,000 women in the U.S. are living with cancer that has spread beyond the breast, according to a 2017 study by the Metastatic Breast Cancer Alliance (MBCA) and the National Cancer Institute. “A lot of people don’t understand what metastatic breast cancer is,” Susan points out. “I want to get it out there that it’s the only breast cancer that people die from, and that more research needs to be done in that field.”
While there have been amazing breast cancer breakthroughs, Susan says many with MBC feel left out of the good-news “rah-rah, pink ribbon thing,” as she calls it (one of her most popular posts is “Pink, Pink, You Stink“). She hopes to help clear up misinformation and myths about breast cancer. One biggie is that it’s not really a bad cancer, when in fact 40,000 women a year die from the disease. “Catching it early is a good thing,” she says. “But that doesn’t mean that the breast cancer is not going to come back. Mine was caught early and unfortunately the tumor in my breast was very, very aggressive, and three years later the dormant cells decided to have a party and—boom, they came at me with such speed.”
Courtesy KellyLynne PhotographyStill, there is some good news for people with stage IV breast cancer. The 5-year-survival rate for women with metastatic breast cancer is low but improving: The MBCA study found it jumped from 18 to 36 percent among women diagnosed young (under 50) between 1992–1994 and 2005–2012. Just last week, Susan heard an amazing stat: There have been more new treatments for MBC in the last 5 years than in the previous 20. “I’m lucky because I got it four years ago,” she says.
Staying positive, she has found, comes down to refusing to stress about the future. “I have learned that if there are things I can’t change or control, I don’t worry about it,” she says. “I used to have scanxiety—that’s the fear of the scans, what are they going to show? But I don’t have that anymore. I’ve realized I can’t change the results, so why am I going to waste my precious time worrying about them?”
She’d much rather spend that time with her family. She is creating legacy books for Michaela, now 22, and Max, 18. “I want to leave a part of me for them,” she shared with Robin Roberts in a moving WebMD video.
Courtesy KellyLynne PhotographyFrom the time Susan was first diagnosed—when her kids were just 15 and 11—keeping an open dialogue has been paramount. “I used to mentor newly diagnosed breast cancer patients and I would tell them: ‘Be honest with your children.’ That’s a big thing of mine. My children knew everything, even when they were younger. It’s very scary for children when they’re not sure what’s going on.”
Michaela knows her mom carries the BRCA 2 mutation and soon she’ll get BRCA gene testing too. “My friend asked Michaela, ‘Are you nervous?’ And she was like, ‘Nope, if I have the gene they’ll just start watching me earlier.’ She’s really positive about it.'” (These are the surprising facts you didn’t know about the BRCA gene.)
Her other advice? Go with your own flow. “When you feel good, do things. And when you’re tired, rest.” There have been days, she says, when she slept for 17 hours. “When I feel good, I love walking my dog, cooking—doing the simple things.”