Cancer stole her voice. She used AI, curse words and kids’ books to get it back.

When doctors told her they had to remove her tongue and voice box to save her life from the cancer that had invaded her mouth, Sonya Sotinsky sat down with a microphone to record herself saying the things she would never again be able to say.

“Happy birthday” and “I’m proud of you” topped the phrases she banked for her husband and two daughters, as well as “I’ll be right with you,” intended for customers at the architecture firm she co-owns in Tucson, Arizona.

Thinking about the grandchildren she desperately hoped to see born one day, she also recorded herself reading more than a dozen children’s books, from the Eloise series to Dr. Seuss, to one day play for them at bedtime.

But one of the biggest categories of sound files she banked was a string of curse words and filthy sayings. If the voice is the primary expression of personality, sarcasm and profanity are essential to Sotinsky’s.

“When you can’t use your voice, it is very, very frustrating. Other people project what they think your personality is. I have silently screamed and screamed at there being no scream,” Sotinsky said, referring to rudimentary voice technology or writing notes by hand before she chanced upon a modern workaround. “What the literal you-know-what?”

Fighting invasive oral cancer at age 51 forced Sotinsky to confront the existential importance of the human voice. Her unique intonation, cadence and slight New Jersey accent, she felt, were fingerprints of her identity. And she refused to be silenced.

While her doctors and insurance company saved her life, they showed little interest in saving her voice, she said. So she set out on her own to research and identify the artificial intelligence company that could. It used the recordings Sotinsky had banked of her natural voice to create an exact replica now stored in an app on her phone, allowing her to type and speak once again with a full range of sentiment and sarcasm.

“She got her sass back,” said Sotinsky’s daughter, Ela Fuentevilla, 23. “When we heard her AI voice, we all cried — my sister, my dad and I. It’s crazy similar.”

‘Your voice is your identity’

Sotinsky’s complained to her orthodontist and dentist multiple times about jaw pain and a strange sensation under her tongue. It took close to a year for them to detect her cancer.

That’s when she started recording. In the five weeks between her diagnosis and surgery to remove her entire tongue and voice box — in medical terms, a total glossectomy and laryngectomy — she banked as much of her voice as she could manage.

“Your voice is your identity,” said Dr. Sue Yom, a radiation oncologist at the University of California-San Francisco, where Sotinsky got treatment. “Communication is not only how we express ourselves and relate to other people, but also how we make sense of the world.”

“When the voice is no longer available, you can’t hear yourself thinking out loud, you can’t hear yourself interacting with other people,” Yom said. “It impacts how your mind works.”

People who lose their voice box, she added, are at higher risk for long-term emotional distress, depression and physical pain compared with those who retain it after cancer treatment. Close to a third lose their job, and the social isolation can be profound.

Most laryngectomy patients learn to speak again with an electrolarynx, a small battery-operated box held against the throat that produces a monotonic, mechanical voice. But without a tongue to shape her words, Sotinsky knew that wouldn’t work for her.

When Sotinsky had her surgery in January 2022, AI voices were still in their infancy. The best technology she could find yielded a synthetic version of her voice, but it was still flat and robotic, and people strained to understand her.

She got by until mid-2024, when she read about tech companies using generative AI to replicate a person’s full range of natural inflection and emotion.

While companies can now re-create a person’s voice from snippets of old home movies or even a one-minute voicemail, 30 minutes is the sweet spot.

Sotinsky had banked hours reading children’s books aloud.

“Eloise saved my voice,” Sotinsky said.

Now she types what she wants to say into a text-to-speech app on her phone, called Whisper, which translates and broadcasts her AI voice through portable speakers.

Most doctors and speech therapists who work with head-and-neck cancer patients don’t realize AI software can be used this way, Yom said, and with their focus on saving lives they often don’t have the bandwidth to encourage patients to record their voices before they lose them in surgery.

Health insurance companies likewise prioritize treatments that extend life over those that improve its quality — and typically avoid covering new technologies until data proves their actuarial value.

Sotinsky and her daughter spent months wrangling with claims adjusters at Blue Cross Blue Shield of Arizona, but the insurer refused to reimburse Sotinsky for the $3,000 she spent on her initial assistive speaking technology.

“Apparently, having a voice is not considered a medical necessity,” Sotinsky quipped.

She now pays the $99 monthly fee for her AI voice clone out-of-pocket.

“While health plans cover both routine and lifesaving care, assistive communication devices are typically not covered,” said Teresa Joseph, a spokesperson for Blue Cross Blue Shield of Arizona. “As AI provides opportunities to impact health, we imagine that coverage criteria will evolve nationally.”

Research might lead to insurance coverage

Sotinsky resolved to use her newfound voice to help others regain theirs. She stepped back from her work in architecture and built a website detailing her voice banking journey — voicebanknow.com. She tells her story at conferences and webinars.

Dr. Jennifer De Los Santos was so inspired that she began laying the groundwork for a clinical trial on the impact AI technology has on patients’ communication and quality of life. That type of research could generate the data health insurers need to measure actuarial value — “and therefore justify coverage by insurance,” said De Los Santos, a head-and-neck cancer researcher and professor at Washington University in St. Louis.

Breast cancer survivors faced a similar battle in the 1980s and ’90s, she added. Insurers initially refused to cover the cost of breast reconstruction after a mastectomy, calling the procedure cosmetic and unnecessary.

It took years of patient advocacy and carefully crafted data showing reconstruction had a profound impact on women’s physical and emotional well-being before the federal government mandated insurance coverage in 1998.

Both De Los Santos and Yom said research data on AI voice clones will likely follow a similar path, eventually proving that a fully functioning, natural-sounding voice can lead to not only a better life, but a longer one.

In recent months, Sotinsky’s AI voice literally helped save her life. Her cancer had resurged in her lungs and liver. Her voice allowed her to communicate with her doctors and participate fully in developing the treatment plan. It showed her just how “medically necessary” having a voice is.

She noticed that doctors and nurses took her more seriously. They didn’t tune out the way people often did when she relied on her more robotic, synthesized voice. It seemed they saw her as more fully human.

“If someone can only communicate using a few words at a time, and not elaborate and interface more fully, it’s natural that you can’t detect that they have more depth of thought,” she said. “Being able to dialogue with my care team in a more seamless way is vital.”

While doctors successfully treated her latest round of cancer, Sotinsky, now 55, said she is confronting her odds in a new way, facing the reality that she will likely die much sooner than she wants.

All over again, she realized how crucial her voice is for maintaining perspective on life and a sense of humor in the face of death.

“I tend to forget and think I am fine, when in reality, this is forever now. Emotionally, you start to get cocky again, and this was like, Whoa, b****, we ain’t playing. This cancer is real,” Sotinsky said, typing her next phrase with a mischievous grin.

“Sarcasm is part of my love language.”

This article is from a partnership with KQED and NPR. KFF Health News is a national newsroom that produces in-depth journalism about health.