'I thought it was toothache - but it was cancer' Extraordinary courage of 'sweet and beautiful' Nicole Kowalski-Kleinsasser robbed of her smile, half her face and finally her life

But despite terrible pain, years of agonising treatment and the loss of so much, Nicole Kowalski-Kleinsasser refused to give up.

Her symptoms began innocently enough in 2017 when she was just 25 - a nagging toothache on the upper right side of her jaw which became so bad she struggled to sleep.

A dentist could find nothing wrong but soon the pain became unbearable. Doctors told her she had a sinus infection, a jaw condition or even muscle strain, and prescribed antibiotics which did nothing. None of them spotted the cancer growing silently in her face.

Nicole eventually returned to her dentist and this time X-rays revealed a problem, bone loss in the jaw. She was referred to a surgeon who identified a mass near a molar - she would need a biopsy.

The procedure that followed would haunt her for years - a numbing agent failed and she felt every excruciating tug as the oral surgeon used both hands to remove her tooth.

“I’ve never felt pain like that in my life,” Nicole said, in a viral TikTok, voice shaking. “I could feel every single thing that he was doing. I could feel every single tug. At this point I’m yelling with my mouth open, I’m bawling and crying and he’s not stopping. I love horror movies and this is what I imagine being in a horror movie would be like.”

Worse was to come. Part of the mass was extracted and analysed; test results came back negative for cancer but the rest of the tumour would need to be removed.

The operation was extensive and would change Nicole’s life forever. Surgeons removed four teeth and part of the roof of her mouth. This time a biopsy revealed she had salivary gland cancer.

Deeply shocked, she began 30 days of radiotherapy which she described as “next level painful”.

“It’s burning your skin,” she said. “My burns were inside my mouth and I usually equate it to swallowing acid or glass. It was excruciating pain, and I was incredibly tired.

“There was a period of time during the first round that I just don’t know. I lost a week.”

She needed a prosthesis called an obturator to close the hole in her mouth and allow her to speak, eat and drink. Held in place by wires and delicate fittings, it was not only painful to wear but required constant adjustments.

Nicole recovered from surgery and for a while life was stable. But pain was a constant presence and it eventually came in unbearable waves. Her teeth had also started to shift, which she found deeply distressing.

“I lost my smile,” she said. “I’ve had this smile all my life. And it’s just gone. It was a really devastating experience to have that happen, to have them shift like that.”

Doctors believed her teeth were moving because of necrosis, the death of cells in body tissue. She was forced to undergo another jaw operation, this time removing what was left of the roof of her mouth and seven more teeth.

The biopsy results brought terrible news. It was not necrosis; the cancer had returned and she would need more radiotherapy. .

Nicole had now lost 11 upper teeth, the entire roof of her mouth and was reliant on multiple obturators to function. But after a second round of brutal treatment, she was cancer free and finally able to resume normal life.

A vibrant, outgoing young woman, she plunged into a master’s degree in psychology and then a doctorate, resumed exercise and enjoyed spending time with family and friends.

By then she had met Eric Kleinsasser, who she described as the love of her life. They married at Lake Arrowhead, in California, and made a home in Burbank with their two beloved dogs, Vinny and Puddin.

“Nicole had this joy for everyday life that was contagious,” Eric says. “It’s one of the first things I fell in love with. She was constantly learning, constantly growing.”

“She shared so much of her past with me early on. Her childhood in Vegas, riding horses, falling in love with theatre, the loss of two close friends before graduating high school - all of it shaped her.

“She was fascinated by people and wanted to understand others, not judge them. She used everything she’d been through to make more space for compassion.”

Nicole’s happiness was not to last. In April 2022, after two healthy years, she found an indentation on the side of her face. Tests confirmed the cancer had returned once more.

This time doctors removed part of the outside of her face, rebuilding her profile with more skin grafts taken from her leg. Nicole found this hard; she had only just become comfortable with how she looked after surgery - now that agonising process would begin again.

There were also financial challenges due to a string of insurance and benefit denials. “It wasn’t just stressful, it was dehumanising,” Eric says.

A fundraiser was launched to help bridge the gap. Nicole had always resisted asking for help, but her husband says she recognised that telling her story openly might also help others feel seen and supported.

As her advocacy grew, Nicole found purpose. She documented her triumphs and struggles on TikTok and @‌nicolescrookedsmile became a lifeline for many facing serious illness.

With unflinching honesty and dark humour, she laid bare the brutal realities of dealing with disfiguring cancer and spoke openly about prosthetic care, post-op trauma and radiation damage.

She also sat on survivor panels, participated in medical research, and addressed groups of doctors and students, using her experience to improve care for others.

Life was never easy and some days were impossibly hard.

“She didn’t always feel strong,” Eric says. “She’d say, ‘This doesn’t feel like courage. It just is.’ But to me - to everyone - she was the embodiment of it.”

“She grieved the person she used to be. And I think it’s important that people understand that grief and resilience can coexist.”

During her last months, Nicole never stopped trying to get better, and her mind remained sharp. Frail, exhausted and with slurred speech, she continued to inspire millions around the world.

“Nicole had this ability to hold two feelings at once,” Eric says. “She’d be in the middle of pain, exhausted, grieving - and she’d look at me and say, ‘I’m so happy.’ She meant it. Because she never gave up on seeing beauty.”

Nicole died on January 23 this year at UCLA Santa Monica. Just 33, she had spent most of her adult life battling an unrelenting and merciless disease.

“It is with a heavy heart and incredible sadness that we let you all know that our brave, sweet, loving, persevering and beautiful Nicole has been taken from us,” her mother wrote on her daughter’s Instagram page.

“There is not another human being that could ever replace someone so loved, so loyal, so honest, so non-judgmental and so determined to get better. Nicole did whatever she could to rid herself of such a hideous disease. She did not lose. She did not fail.

“She walked through every battle with grace and determination and through it all, she smiled, never asked for pity or blamed anyone for her illness…. Life will never be as bright as it was without that crooked smile.”

Despite everything she suffered, Eric believes his wife never lost hope.

“Nicole is the most beautiful person I will ever know,” he says. “She taught me to see beauty in places I never thought to look. She lived forward, always. And she didn’t just survive. Even when she was in unbearable pain, she was thinking about how to make others feel less alone. Nicole gave everything she had to this fight. Now it’s our turn to carry her voice.”