Carol Schiewe has survived cancer, twice. She lives with the knowledge that she is the 271st person to have been diagnosed with a rare neurological disorder. She works out every day, for hours at a time, in order to ensure that she has a fighting chance to see her daughter build her own life.
But what’s thrown her for a loop this month has been how to deal with receiving a Spirit of Wellness award from the Beach Cities Health District.
“I appreciate it. I really do,” said Schiewe at BCHD’s Center for Health and Fitness. “It’s not my cup of tea…I’m probably going to barf up there, probably won’t say two words.”
Which is surprising; for the last two hours, Schiewe held court, laughing and telling her story at ease.
Her life changed in 2009, when she noticed a lump in her right breast.
Despite a mammogram and ultrasound, experts missed it, considered it to be nothing, a symptom of having fibrocystic breasts. But a seed of doubt in her mind, raised by a concerned doctor finishing her fellowship, caused Schiewe to get an MRI.
The MRI proved the concerns correct: Schiewe had a 14-by-14-by-16 centimeter tumor, nearly twice the size of a baseball, in her right breast.
It was a stunner for Schiewe, a registered dietician who was used to dealing with medical situations from the opposite side of the desk.
But she soldiered on — a trait she believes she believes came from her 93 year old father.
“That’s where I get all of who I am and what I am — I get knocked down, dust myself off and keep going,” Schiewe said.
That attitude helped when she was diagnosed with thyroid cancer less than a year after finishing breast cancer treatments, leading to the removal of her thyroid gland.
Without her thyroid gland, Schiewe’s body is unable to control her metabolism, leading to potential weight gain. Fat cells, however, produce estrogen, and two forms of breast cancer grown and feed on high estrogen levels, potentially putting Schiewe at risk of her cancer returning should she gain weight.
So, in 2011, Scheme began working out, hard. She’s at the CHF gym five to six times a week, taking classes or working with her trainer, Derick Malit, the man with the 100-watt smile.
“But he’s also got a 100 watts of drive-me-crazy,” Schiewe said, mid-push up, Malit laughing beside her.
She doesn’t love the grind — she sees it as necessary to survive for her 22 year old daughter, Emma.
“She’s just everything to me…if I hadn’t had her, I wouldn’t be here. After my diagnosis, I just would’ve gone traveling the world,” Schiewe said.
Emma, Schiewe said, is her “perfect child” — the winning hand after being dealt several bad beats trying to conceive with her husband, Mitch.
The cancer diagnoses were the next in a series of challenges thrown at her by the world. She was tired of having the other shoe drop all the time. But in 2014, after a year of bad earaches, back problems and MRIs, she was diagnosed with superficial siderosis, a rare brain disorder that threatens to leave her immobile, deaf and incontinent.
Her response was to put her head down, her shoulder forward, and to keep powering through.
Schiewe was featured in BCHD’s LiveWell magazine last December, leading to initially-uncomfortable attention. Then one day, she was approached at the gym by another CHF regular.
“I was supposed to have surgery, and I didn’t want to, but then I read your story,” Schiewe recalled being told. “If Carol can do it, I can do it.”
The idea of standing on a stage, being celebrated, makes Schiewe uncomfortable, but she feels her story is bigger than she is.
“It’s not my style [to pat myself on the back], but I’ve had to put it in perspective,” Schiewe said. “I’m trying to do this for other people. Paying it forward. What I’ve gotten from this, the change in who I am, is to find the joy in life.”
