CancerDancer co-founder Esther Windmueller. Photo by Brittany Claud
Esther Windmueller has been in lots of battles, mostly in the courtroom.
"There's a reason so many TV shows are about criminal defense," she says. "It's interesting, life and death, fighting."
On Oct. 5, 2009, Windmueller, then 42, began fighting for her own life. The Richmond native, a public defender for almost five years before opening her own law practice, learned that she was facing ovarian cancer.
Sitting cross-legged on a couch, she laughs and says, "I had this myth that I was going to live to be 105."
Windmueller closed her practice in January 2011 but still sits as a substitute judge in general district courts throughout Virginia. "It was difficult to close my office, but I was terrified that I would end up going into court focused on other things and that someone would suffer because of it," she says. "The pressure on a criminal-defense lawyer handling felonies can be much higher than the pressure on a judge hearing only misdemeanors."
When Windmueller saw a gynecologist for "rippling pain" in her lower abdomen in the spring of 2009, an ultrasound revealed spots, diagnosed as ovarian cysts, a common occurrence in many women. That conclusion was reached a second time, following more tests. But the pain continued, and months later, at Windmueller's insistence, a third scan revealed that the "cysts" were growing.
"In retrospect, I was pretty bloated, a symptom of ovarian cancer," she recalls. "I probably thought I was just getting a little chunky. My gynecologist did three ultrasounds and two blood tests called CA125. In 80 percent of women who have ovarian cancer, the CA125 comes back with elevated values. Mine were normal. Ovarian cancer was diagnosed about six months after I presented with pain."
Windmueller was down but far from out. In October 2010, she developed CancerDancer ( cancer-dancer.org ) , a website that promotes awareness of ovarian cancer. She was dancing on the beach in the Dominican Republic with some friends, a respite from chemo, when the name came to her. "Through CancerDancer, I'm trying to give hope and information," Windmueller says. "If a woman notices bloating, feeling full, a change in urinary or digestive habits, or pain, whether it's in her back or rippling through her in a very indescribable way, flags should go up. If her doctor doesn't listen, find another."
Her boyfriend, Kyle Nicholas, is a co-founder of the site, where he blogs about being a caregiver. Nicholas' mother died of ovarian cancer in September 2009.
"I was diagnosed two weeks later," Windmueller says. "That rocked him pretty hard."
Windmueller is among a group of female survivors who tweet, distribute bookmarks that list cancer symptoms and speak to future doctors at the VCU School of Medicine as part of Survivors Teaching Students, a program launched by the Ovarian Cancer National Alliance to help educate health-care professionals about the disease and its symptoms.
"I want the whole world to know the symptoms of ovarian cancer, like they know the symptoms for heart attacks," Windmueller says. "All cancers are tragic, but there is no test for ovarian cancer. It's aggressive, and treatment options aren't terribly good, making it particularly insidious. My doctor did all the right things, as I did, but it just wasn't discovered early on."
After Windmueller's oncologist retired, she went to the University of Virginia for additional tests. After a biopsy on a liver spot came back cancerous, Windmueller was asked if she was of Eastern-European descent.
"I learned that Ashkenazi Jews, from certain areas of Germany, are at high risk for a gene called the BRCA gene, which stands for breast cancer," she recalls. "I'd had cancer for nine months before the first medical professional mentioned that."
Windmueller learned that she has the BRCA gene, giving her a 40 percent to 60 percent chance of getting ovarian cancer and approximately an 80 percent chance of getting breast cancer. Windmueller's doctors started talking to her about palliative care, but she remained unbowed.
"I can read statistics, and they're terrible, but even if there's a 1 percent chance of recovery, why not me?" she says. "That's when I decided on a clinical trial."
In September 2010, Windmueller entered a clinical trial — through the National Institutes of Health in Maryland — for a type of cancer treatment known as PARP inhibitors.
"The study involves chemo and experimental drugs, which has been particularly effective for hereditary cancers," she explains. During the trial Windmueller had what turned out to be a false alarm. "They tracked this big tumor for over a year, until they said that it was getting big enough that I should leave the study.
"More testing was conducted at U.Va. and MCV. I learned on my birthday, Oct. 25, 2011, that I did not have a pelvic tumor. I couldn't believe such good news. NIH had mistakenly viewed a loop of bowel, sitting really low in my pelvis."
Windmueller, who refers to herself as a "research monkey," rejoined the NIH trial in November 2011. She takes trips to Maryland every three weeks for a pelvic exam, blood tests and meds to treat what is classified as a "cancer of undetermined activity." MRI and CT scans are done every six weeks.
Windmueller finds great comfort in her family and also Lola, her dog. The brown mutt, now 10, was diagnosed with cancer in November 2008. Windmueller was told then that Lola was a goner.
She laughs and says, "That dog's not a goner, and neither am I."
©Nancy Wright Beasley 2012. All rights reserved.
