Originally published by The Oaklandside
Channeling her love of activism and dance, Schnall is organizing a Dance-A-Thon fundraiser to spread awareness for ovarian cancer. The event will take place on Dec. 2 at the Claremont Hotel and Spa in Berkeley, and feature three of her favorite local dance instructors leading West African, Cuban Salsa, Afro-Brazilian, and Samba routines.
Proceeds from the event will go to the National Ovarian Cancer Coalition and to survivors in need of assistance. She hopes the event will help spark conversation and connect women to knowledge and resources that she wasn’t aware of before her diagnosis.
“If my story helps anybody recognize this earlier, then it’s worth talking about,” she said.
Discovering her love of dance in Haiti
Schnall remembers the first time she was compelled to dance. In the summer of 1994, in rural Haiti, she was working as a photographer and translator with the only Haitian Kreyol language newspaper, Jounal Libéte. She was based in Port-au-Prince, but traveled extensively with the paper, and quickly realized that throughout the country, dancing was a prominent part of life.
“Everywhere I went, people were dancing,” Schnall said. “If you wanted to be social with people, which I did, you actually had to dance.”
Schnall, who grew up in New York City, described herself as a shy book nerd with an atypical body. She’d secretly admired girls in dance troupes, but never saw herself as a dancer, in part because she didn’t bear the flat chest, stomach, and round hips that were considered “beautiful” at the time.
But in Haiti, people of all body sizes and generations danced at social and political events and in the streets. She recalls seeing a large woman dancing gracefully in a rural bar.
“The fact that she was large and voluptuous, like she had so much booty and so much thighs and so much breast, and she was so in her experience in the body,” Schnall said. “She was beautiful to me, I felt like she gave me permission to feel beautiful in my body.”
Nina Schnall, front right, celebrates with her dance instructor Lisa Saunders, left, at the Claremont Club in Berkeley, Calif. on Sunday, Nov. 19, 2023. Credit: Amaya Edwards
She noticed people from all generations dancing; an older woman who walked with a cane became “liquid” while dancing at a voodoo ceremony; a boy who followed her around in the streets burst into dance at the sound of pop music.
“I saw this place where there were so many problems and at the same time, people had such capacity for joy,” she said. “It was something I really wanted.”
She started taking Afro-Haitian folkloric dance lessons on the front porch of local woman Vivianne Gauthier’s gingerbread house — a unique turn-of-the-century style of Haitian architecture. There, she found the freedom and connection to her body that today is helping save her life.
Moving through moments of pain
Movement has been central to Schnall maintaining her mental and physical health throughout her experience with ovarian cancer.
Schnall never stopped dancing after she returned from Haiti in 2000. She became connected to the dance community in the Bay Area and has since taken classes at several studios, including Oakland’s Malonga Casquelourd Center for the Arts with dance legends Zac Diouf and Alicia Langlais, performed in San Francisco’s Carnaval parade with Haitian dance collective Rara Tou Limen, and explored several different styles of dance, including samba, funk, and sabar — a Senegalese style.
But after she became sick, she wasn’t able to dance, and her diagnosis coincided with the onset of the COVID-19 pandemic, so classes stopped. In the absence of dance, she sought other activities that brought her joy, like drumming, walking the Oakland hills with her mother, and yoga.
Schnall has practiced yoga regularly for over 20 years and says she doesn’t know how people live without it.
“I found yoga to be incredibly helpful for just being with really painful feelings,” she said.
Nina Schnall, front right, dances at the Claremont Club. Credit: Amaya Edwards
After her second round of chemotherapy, she went into remission and decided to do a 200-hour yoga-teacher training at Nest Yoga in Oakland. Just a few weeks after, though, her tumor marker, which is an indicator of tumor growth, started to go up again, meaning that the cancer was coming back.
“It was extremely scary and I almost dropped out [of the yoga teacher training] as I had lab tests, scans, consultations, and tons of uncertainty,” she said. “But then I realized the program was hugely helpful in coping with fear and uncertainty.”
She finished the training and also completed an advanced studies program in yoga for gynecological cancers, and was able to substitute-teach classes at Nest.
“There’s so much in yoga that can help women who are going through cancer and treatment like this,” she said. “It helps us heal physically, psychologically, and emotionally [in a manner] that’s not available in other ways.”
Nina Schnall, right, with her mother, Susan. Credit: Amaya Edwards
New ovarian cancer treatments offer some hope
Schnall’s ability to do yoga, and especially to dance, is largely dependent on the medications she is taking and how well she is feeling as a result. She’s now undergone multiple rounds of chemotherapy, participated in an unsuccessful clinical trial, and taken a variety of different medications. Because of the stage of her cancer and the resistance she has developed to traditional chemotherapy, she’s at the whim of new breakthroughs, cobbling together treatments as they come on the market in order to stay alive.
Ovarian cancer is considered a silent killer. According to the American Cancer Society, it’s the deadliest of reproductive cancers, and early symptoms are hard to spot. Unlike breast cancer or other cervical cancers, there is no screening process. As a result, women are diagnosed in the later stages when survival rates are lower.
“The statistics around ovarian cancer are terrifying. Most women — about 80% — are diagnosed only when it’s advanced, so stage 3 or 4, and the five-year survival rate for advanced ovarian cancer is about 10%,” said Schnall.
Schnall was diagnosed with stage 3B, which is considered advanced, and throughout her experience, she realized there was a lack of conversation and knowledge of ovarian cancer compared with others like breast cancer.
“The fact that I had never heard about it, that there’s no screening for ovarian cancer, and that my doctors didn’t recognize it—I was like, how is there this gap in information and knowledge around this illness?” she said.
Susan shows a custom bracelet made for Nina’s supporters. Credit: Amaya Edwards
In part, she thinks it’s because it’s a rare disease. About one in 78 women are at risk, compared with a one in eight chance of getting breast cancer. But she also thinks the lack of conversation is because not enough women live long enough to talk about it.
Schnall’s oncologist is Dr. Babak Litkouhi, a clinician educator and gynecologic oncologist at the Stanford Women’s Cancer Center. He said that creating a screening for ovarian cancer has been in the works for over 20 years, but that so far, studies have not shown improvements in survival and researchers don’t have a good idea of how to identify it early on, in part because “you’re looking for a needle in a haystack.” While researchers are working toward it, he doesn’t think a screening process is close on the horizon.
The first line of treatment for ovarian cancer is called platinum chemotherapy, which is considered the strongest treatment. If the cancer recurs within six months after chemotherapy, it is considered both incurable and resistant to platinum chemo. Schnall’s cancer has come back twice, and the path is less clear for patients who become resistant due to a lack of treatments.
“Until very recently — I mean this year — having platinum-resistant ovarian cancer was basically a death sentence,” she said. “There have been very few options—weekly Taxol or Gemcitabine — that can keep the cancer in check for a few months. These treatments are extremely toxic and will wreak havoc on the immune system.”
A medicine called Elahere was approved by the FDA last year, and Schnall and Dr. Litkouhi consider it a game changer. It’s the first targeted treatment for platinum-resistant ovarian cancer and is considered more effective and less toxic than traditional chemotherapy.
Ten days after receiving her first infusion of Elahere, though, Schnall received an unexpected symptom — her vision suddenly became blurry and her eyes were so sensitive to light that she had to wear sunglasses at night. She went to the emergency room, and her next scheduled infusions of Elahere were delayed to ensure her eyes fully healed. She received another infusion at the beginning of November, and so far, hasn’t experienced any challenges with her eyes.
Apart from the symptoms, Elahere has proven to be very effective. When she started the drug, her tumor marker was above 900. After two treatments, it decreased to 31, within a range considered normal. She’s grateful that it’s working, but noted that on average, it’s only effective for six months, and she isn’t sure what comes next after Elahere.
“A big part of the problem with ovarian and gynecological treatment is there just is not enough pressure. There’s not enough discussion and there’s not enough awareness. And so I think the treatments are very slow to develop,” Schnall said. “We need better treatments that aren’t so toxic and don’t have so many side effects, and I believe that it’s possible to find those treatments.”
Dr. Litkouhi agrees that cancer research and development isn’t moving fast enough, in part due to social and political factors that affect people’s access to healthcare and funding for medical research. But he’s confident in recent developments like Elahere.
“There have been a number of very important developments in cancer in general in the last 10 to 15 years, and specifically in ovarian cancer as well,” Litkouhi said. “There are definitely individuals that are living with ovarian cancer longer than they historically have.”
According to the American Cancer Society, ovarian cancer diagnoses have been slowly falling over the past 20 years, and the rate of decline in deaths has sped up from a 2% annual decrease during the early 2000s to a more than 3% annual decrease from 2016 to 2020.
Finding comfort and support in Oakland’s dance community
From left, friends Omari Weaver, Nina Schnall, and Lisa Saunders at the Claremont Club in Berkeley, Calif. on Sunday, Nov. 19, 2023. Credit: Amaya Edwards
In the beginning, Schnall was private about her diagnosis. After five months, though, she decided to tell her story on Facebook. Afterward, someone in her yoga community reached out and said she was experiencing symptoms similar to what Schnall had described — irregular spotting and bloating. Shortly after, her friend was diagnosed with stage one endometrial cancer.
“That was sort of the first moment of feeling like sharing my story could help other women and wanting to do that more,” she said.
Since then, even amidst the biggest challenge of her life, Schnall has stayed rooted in what brings her joy: community, drumming, yoga, and dance. She’s hopeful that Elahere will keep working but emphasizes the need to increase national conversation around ovarian cancer and speed up the development of new, less toxic treatments.
“I know they are making breakthroughs,” she said, “but will they make a breakthrough for ovarian cancer in time for me?”
In Oct. 2022, Schnall met Milo Levelle, a dancer and choreographer, at a wellness retreat. During the getaway, she was recovering from a brutal chemotherapy regime and desperately searching for resources to support her body and spirit. She dreamt up the idea of a dance-a-thon and Levelle was the first person she told. He supported the idea, and suggested starting “Team Nina,” a monthly get-together of Schnall’s closest friends to discuss event details and provide emotional support.
The dance-a-thon is a result of months of planning and will feature dance-alongs hosted by Oakland dance teachers Lisa Saunders, Fatou Kamara, and Katy Yong.
“I wanted to do something with dance that also felt meaningful and was helpful to other people,” she said. “I feel really fortunate that I get to dance with these women and honored that they’re contributing their art.”
The “Team Nina Dance-A-Thon for Ovarian Cancer Awareness” will take place on Saturday, Dec. 2, 2023, from 3:00 p.m. to 5:00 p.m. at the Claremont Hotel and Spa, 41 Tunnel Road, in Berkeley, California. For more information, you can email teamninadanceathon@
Ayla Burnett is a narrative writer and investigative reporter covering climate science, food and environmental justice in the Bay Area. She received her masters from UC Berkeley’s Graduate School of Journalism in May 2023, and was a UC Berkeley food justice reporting fellow at The Oaklandside/Nosh in the summer of 2023. Her stories have also been published in Berkeleyside, the Point Reyes Light, and more.