By Khalida Sarwari
What started as a joyous holiday season for Laurie DeSimone a few years ago ended in a visit to urgent care that eventually led up to the worst day of her life. She had just celebrated the birth of her first grandchild, Emerson, and suddenly was facing her own mortality.
The excitement of holding her grandson and showing him off to friends quickly gave way to fatigue and shortness of breath. Even when lying down in bed, she’d find herself needing to sit up to breathe. So the morning her daughter and son-in-law left to go back to Los Angeles, DeSimone went to see a doctor to see what was wrong. After subjecting her to a series of tests and X-rays, they came back with a diagnosis: stage four ovarian cancer. The news came out of the clear blue sky, she recalls.
What followed was a year of ups and downs. She started undergoing treatment at Stanford, completing intensive chemotherapy and major abdominal surgery in a process known as “debulking,” which is the surgical removal of part of a malignant tumor that cannot be completely excised–or, as DeSimone describes it, a process where doctors do “the best they can to get rid of what they can get rid of.”
All of this earned her remission, albeit short-lived. The cancer returned a year later.
Around that time, she said her daughter and son-in-law discovered a 5K walk and run for ovarian cancer in LA. Though she had just completed a round of chemo, DeSimone went down to do the walk with them. They finished last, though she swears the baby had something to do with that. But that wasn’t important. What mattered most is that hundreds of people had shown up that day to raise thousands for Cedars-Sinai Medical Center’s research program for women’s cancers. So many others stood on the sidelines with signs of support.
“It just struck all of us as so amazing,” she said. “I don’t even know how to describe the feelings we had. It was just an amazing feeling of support and overwhelming love.”
Both moved and inspired by the experience, DeSimone and her daughter contacted the organizer and asked how they could bring the event up to the Bay Area. Last October, she and her husband, Ralph, started the Teal Foundation in an effort to raise awareness about ovarian cancer and try to fund projects seeking to find an early detection test.
“They called it the silent killer for a long time, and we don’t want it to be silent anymore,” she said.
The Teal Foundation’s inaugural event is on Sept. 26 and it’s a 5K walk and run they’re calling the Teal Run. Teal is the color associated with ovarian cancer, just as pink is the symbol of breast cancer awareness. The foundation’s goal is to raise funds for Stanford research programs, as well as local cancer support groups such as Cancer CAREpoint and Bay Area Cancer Connections.
Fundraising aside, the impetus behind the Teal Foundation is to raise awareness about the fact that there is currently no diagnostic tool for ovarian cancer. There are mammograms for breast cancer and pap smears for cervical cancer, but no such tests for ovarian cancer, DeSimone said.
“The problem with ovarian cancer, which most women don’t understand and know, is that there is no reliable test for it, and women with ovarian cancer are more likely to be diagnosed at stage 3 or stage 4 because that’s when you’re symptomatic,” she said. “When I talk to women about this, they’re shocked; they say, ‘What do you mean we’re not covered?’ “
Even those who are symptomatic likely wouldn’t know they are sick, because the symptoms–which include bloating, back pain, and loss of appetite–are common enough to dismiss.
“They call it the disease that whispers because you don’t take the symptoms seriously,” said DeSimone.
As for her, she just celebrated her 64th birthday, but is preparing for her fourth round of chemo after the Teal Run. Stage four is a gloomy place to be, she said, but “there’s always clinical trials and there’s always hope.”
“I’ve been able to have almost three years and I’m really grateful for it, but I don’t want anybody to go through this,” she said.
She has invited her doctor, Amer Karam, a gynecological ontologist at Stanford Women’s Cancer Center, to come speak at the Teal Run.
The event will take place at 7 p.m. at Campbell Park. Registration is $40 online and $50 on the day of the race. To register, visit thetealrun.org.
