Etha’s cancer journey began two years ago, though in many ways, it felt like it started long before that. She had lived with Lichen Planus for decades—experiencing only rare flare-ups and generally good health over the past 30 years. However, after receiving her first COVID-19 vaccine, the condition reappeared. Following her second shot, the symptoms worsened, and after the booster, things took a dramatic turn for the worse.
No treatments seemed to help the painful mouth lesions, though topical medications provided some relief for other affected areas of her body. For nearly a year, Etha was repeatedly told by dentists that she simply had Lichen Planus. Despite her persistence in asking what else could be done, she was met with shrugs and prescribed the same ineffective rinses.
Eventually, an endodontist recommended a biopsy—something that had never been suggested before. The results came back positive. In Etha’s case, the oral Lichen Planus had transformed into cancer.
After a whirlwind of appointments, Etha’s surgery was moved up a month as the cancer began to grow more rapidly. Different hospitals offered varying diagnoses: one described it as buccal squamous cell carcinoma, another as malignant neoplasm of the right maxilla.
What was initially expected to be a straightforward tumor dissection turned into a far more complex procedure involving a free flap from her forearm, followed by additional tissue grafting from her thigh. A partial neck dissection was also performed to check for lymph node involvement. The hospital stay was supposed to last about a week, and while a tracheostomy was considered unlikely, it remained a possibility.
Three very long weeks later in the ICU, I finally went home, Etha recalls. I still had all sorts of tubes attached to me and wasn’t fully aware of what had happened. I experienced three complete flap failures—something I was told was statistically almost impossible. The left arm failed, the right arm failed, and then the left thigh graft died after a week inside my cheek. Eventually, I received a Pectoralis Major Myocutaneous Flap and woke up one breast fewer than before. My neck dissection became infected to the point where I kept telling them my bed was always wet. They eventually reopened the incision from ear to ear to clean and re-suture it. I had a trach the entire time and spent much of that period on a ventilator—it was the worst experience of my life.
A few months later, Etha began six weeks of daily radiation treatments, traveling an hour and a half each way from her home. The radiation side effects were awful, she explains. No one told me they could be that severe.
She developed intense trismus, significant speech impairment, and further damage to her remaining teeth. It’s not what I expected, she says. I now have two holes in the roof of my mouth, another opening in the front that keeps me from closing properly, and a bulge on my right cheek the size of a baking potato.
Despite everything, Etha’s resilience shines through. I’m recovering well and slowly regaining strength, she says. I’m stubborn by nature—and if I’m going to live, I want to have some fun doing it. My surgeon told me honestly that they didn’t expect me to survive the cancer—or the treatment. But here I am.
Etha hopes her experience can serve as a cautionary and informative example for others. I wish I had known more going into this, she says. That’s why I’ve started sharing my story—so others can be better prepared.
She’s documented parts of her journey on her YouTube channel: “Wakeup Call: Cancer”
Etha lives in a national forest in New Mexico with her three dogs and a flock of chickens. She enjoys fiber arts, zentangle, hiking, exercising, woodworking, and organic gardening.
Below is a video from Etha discussing how massage therapy is helping with her recovery.
