FRANKLIN – She walked down the shul aisle, her staccato-heeled boots clicking, her large hoop earrings dangling from her bald head. As she stopped to greet and hug friends, her broad smile was infectious.
On Rosh Hashanah, 2018, Susan Shanbaum Rosen was happy God had granted her another year to live.
This Rosh Hashanah, the aisles of Temple Etz Chaim in Franklin were that much quieter.
After exhausting all treatments and clinical trials at Dana-Farber Cancer Institute, Susan, 53, died January 18, 2019, of incurable Stage IV metastatic breast cancer. She left behind a legacy of love, inspiration, laughter, and hope to more than 30,000 people.
Known for her loud, hearty laugh, and zest for life, Susan, who helped raise many children through a home daycare in Peabody, refused to let her cancer define her.
“She didn’t take this diagnosis lying down,” said her daughter Michaela, now a 24-year-old student at Boston University School of Law. According to Michaela, the one thing she regretted is that she would never be a grandmother.
There’s no history of breast cancer in Susan’s family, yet she was diagnosed in July 2010 at age 45 with Stage III breast cancer. She underwent a lumpectomy, and a removal of the tumor and 42 malignant lymph nodes. Because she tested positive for the BRCA (the breast cancer susceptibility gene) mutation, doctors removed her ovaries, and she underwent extensive treatment for months. The treatment initially appeared to work, and she was declared cancer-free for the next three years.
But on Sept. 24, 2013, doctors detected a lump in her head. A full-body MRI and PET scan discovered, to everyone’s shock, that Susan’s cancer had elevated to incurable Stage IV metastatic breast cancer, spreading to her liver, bones, brain and lungs. Susan began treatment, including brain radiation, at Dana-Farber.
Despite rigorous treatments, Susan wanted to share her experiences with the world and encourage cancer patients and their loved ones, so in 2014 she created a blog called “Let Us Be Mermaids.” She came up with her blog’s title after reading a quote about mermaids that she interpreted to mean that women should not fear death, but rather should fear not living life with appreciation.
At first, only friends and family visited the blog. It had 5,500 views in 2014. The next year, there were 13,000. It kept climbing until it reached 25,000 viewers in 2018.
“She brought so many people together, met so many people, and gave advice to many who needed help,” added Michaela. Susan also worked with doctors and researchers at Boston-area hospitals to create a database and social network to help cancer patients connect with each other.
Susan’s blog gained attention nationally and internationally, including from Robin Roberts, a newscaster of ABC-TV’s “Good Morning America” who herself survived cancer and created a program that highlights people who survive despite insurmountable odds.
Roberts chose Susan and family to interview because Susan didn’t sugarcoat anything. Michaela said her mother told everyone, “Don’t curl up in a ball … you keep going.”
Susan’s blog also touched Stage III metastatic breast cancer survivor Anne Gilberti, 52, of Franklin. “Susan made a huge difference in my life. She was small in stature but massive in her heart and soul- ginormous,” said Gilberti. “We were awed with how Susan lived despite her diagnosis, and refused to be defined by her cancer. She radiated hope to us all.”
Susan’s voice is stilled, but Michaela keeps the blog going. “There’s so much misinformation. People just don’t know what metastatic cancer is, yet it’s such a big part of my life,” she said. Michaela, who tested positive for the BRCA mutation, urges Ashkenazi Jewish women or women with family histories of breast cancer to get tested if they can afford it. Michaela goes to Dana-Farber and is about to start having MRIs.
“It took part of my life … she did so much, that it doesn’t just end here. The story needs to keep going,” said Michaela. “Because of cancer, this is my dad’s, Max’s, and my new normal. Life goes on. She lived her life with cancer- that was her normal. Our new normal is living without her.”