Ovarian Cancer Storytellers Help Women Find Their Voice
Kristie L. Kahl
An evening of storytelling among women afflicted by ovarian cancer – whether it be their own diagnosis or a loved one’s – helped to empower individuals to find their voice.
During the 2018 National Ovarian Cancer Coalition (NOCC) Annual Meeting, the Our Way Forward program, sponsored by Tesaro, featured three storytellers who shared their ovarian cancer experiences. The stories were those of women diagnosed with ovarian cancer, and one of a shared experience with a loved one.
“Sharing stories really has the profound ability to help bring people together,” said Stefanie Nacar, executive director of digital engagement strategy and brand public relations at TESARO.
Through a special engagement with the MOTH – a non-profit organization designed to help individuals tell their stories – the program had a universal theme: finding your voice.
“We’re hoping to empower those who are surviving, as well as their loved ones to be educated about their treatment approach and be empowered and proactive about their own treatment and their life, regardless of what stage of disease they are in,” Nacar added.
The first storyteller, Patricia Fischer – a former nurse, storyteller and published author – became an advocate for ovarian cancer after her best friend was diagnosed with the disease.
After learning of her friend’s diagnosis, her first thoughts went to, “How can I help?” to which her best friend replied, “Don’t go anywhere.” Fischer went on to tell the audience about her initial struggles with this one request, feeling that the cancer crippled her ability to simply speak to her best friend. However, after time and learning, Fischer and her best friend went on to talk about everything under the sun – and even came up with seven things people should not say to someone with cancer.
“We talked about our kids and my foster son running around the room with a bowl on his head and what was coming up next in the movies, and just nothing at all – just like friends do and what we had done for 40-plus years,” she said. “The point I want to make is, sometimes being the caregiver is not always being physically there. It is being a person that says they are going to call and follow through, make sure they are there, send that card, text you on Friday, or show up.”
“Sometimes being a caregiver isn’t just being physically there, it’s being in their heart and mind,” Fischer added.
The next storyteller, Lucia Mauro is an ovarian cancer survivor who had two recurrences and found a healing outlet through art, as well as creating films and a TV pilot based on her personal experiences.
In the pilot, Mauro’s character Liz takes a cathartic trip to the Italian alps one year after completing her cancer treatment, all in an attempt to process the new person she has become. “I wanted to express what it feels like not to be defined by illness,” she explained. “Through the process of writing this film, I was empowered to tell my story. I could also go a step further and alter reality.”
Mauro noted her experience helped her to not only share her story, but empowered her to share what she truly thinks and believes in. “Through art, I was able to take ownership of who I am. I am in control, not the cancer.”
The final storyteller, Rozzie Brilliant is an ovarian cancer survivor whose mission is to educate as many people as possible about the disease. Through her story, she shared the pride and joy she experienced as a mother.
After giving birth to her daughter in June of 1968, Brilliant realized her mother and grandmother had both passed away from cancer – quickly realizing maybe this was something inherited that “medicine doesn’t know yet.” As she spent her life waiting for the other shoe to drop, Brilliant was diagnosed with ovarian cancer at 67 years old.
She later underwent genetic counseling, where Brilliant and her family learned she had the BRCA1 mutation. When her daughter discovered she had the same mutation, she decided to undergo a prophylactic oophorectomy. Unfortunately, amidst that procedure, it was revealed that Brilliant’s daughter already had ovarian cancer. “I felt guilt,” she said. “Did I give this to my child?”
However, Brilliant’s fears were quelled when she received what she said was her favorite card she has ever received.
“It’s one from my daughter saying, ‘Most girls grow up fearing that they will be their mothers; my fear is that I won’t be like my mother. I try my best to be like her.’ And on the inside of the card it said, ‘You are a great woman, a great mother, and a great friend, and I hope that I can be the same,’” she said.
“I feel like with everything that has happened, I did do something right. I taught my children a sense of family and a love of life.”
For more information about the event, visit ourwayforward-oc.com.