As said to Nicole Audrey Spector
It started with a bad toothache – deep and throbbing in one of my upper right molars.
I was only 25 years old and perfectly healthy. How bad could it be? Worst case scenario, I probably needed a root canal.
I immediately went to the dentist. She examined my mouth and took X-rays, but found nothing unusual. No cavities. No cracks. Not even receding gums.
“Sometimes these things just happen,” Sshe said. And that was it.
Over the next few weeks, the toothache worsened and the pain spread through my jaw and face. It was so bad I couldn’t sleep.
I turned to other medical professionals for answers. A doctor thought it might be a temporomandibular joint disorder. Another thought it was a sinus infection and put me on antibiotics.
Six months passed. The excruciating pain—pain that none of the doctors I saw addressed, let alone treated—continued.
Eventually I met with a neuropsychiatrist who took my pain seriously. She prescribed me painkillers and I returned to the dentist I first met with, determined to get to the bottom of the problem.
The dentist took more x-rays and this time found something. It appeared that part of the bone in my upper right jaw was missing. The dentist said she had never seen anything like it and didn’t want to go near it. She referred me to a periodontist.
The periodontist was also stumped, so he sent me to an oral surgeon who discovered a mass near my molar. He ordered a biopsy, which removed the molar and some of the mass. During the procedure, he applied an anesthetic, but nothing dulled the pain. I can still remember the sounds of the roots being pulled and ripped with frightening clarity.
I absolutely love horror movies, but living out my very own version was unbearable.
The biopsy was negative for cancer – but the rest of the mass had yet to be removed. So I went to a head and neck surgeon and had a maxillectomy, which involved pulling four teeth and removing part of my soft palate (the back of the palate). A denture was custom made to fill the hole in my roof of the mouth and replace the lost teeth so I could speak, eat and drink normally.
The supposedly benign tumor was sent for biopsy, and this time the biopsy revealed terrible news: I had salivary gland cancer.
After my cancer diagnosis, I started 30 days of radiation treatment. It was painful to the next level and at times I felt really alone. But I was determined to finish my own horror film and get rid of the cancer.
On Valentine’s Day, while recovering from treatment, I found out that my husband was cheating on me and we divorced shortly thereafter. 2018 was clearly not my year.
The radiation killed the cancer — but not for long. A year later, during another bout of unimaginable pain, a scan showed the cancer had returned.
It was back to the operating table where another seven teeth were removed along with my hard and soft palate (the entire palate). Then I underwent another 30 days of radiation therapy.
2019 (Photo/Eric A. Kleinsasser)
After all of this, it finally looked like the pain would end and my life would fully return to me. I could sleep and exercise and focus again. I went back to school and got my master’s degree. I met and got engaged to my new partner and true soulmate Eric. I was happy for the first time in a long time and had two amazing cancer free years.
Unfortunately, this past April I noticed a dent on the right side of my face and soon found out the cancer was back.
I need a third operation, . This time to remove part of the outside of my face. I need skin grafts from my leg. On the one hand, I can hardly wait for this operation because this pain has to stop. But I’m also afraid. I’ve only recently gotten used to looking at myself in the mirror after losing so much of my mouth and teeth.
To make matters worse, I was fired from my job after a long-term leave and lost my disability pension. I’m struggling to get them — and Social Security benefits (as well as my doctors) — but in the meantime, Eric, a high school chemistry teacher, and I are a single-income household. Money is short.
People ask me all the time how I do it. How do I endure all this pain and trauma? How can I still smile – when sometimes it really hurts to smile?
Well, I’ll tell you: I have the most amazing people in my life, and some of those people are also survivors of head and neck cancer. I am deeply involved in head and neck cancer advocacy and frequently share my story and connection with others who may relate. And of course I have Eric. The man I’m marrying this year. The man I know will have a child. I can barely wait for it.
Oddly enough, my love of horror movies also helped me. You know that moment when the character is stranded in the woods with no way out? The killer is after her and she has nowhere to turn, no way to escape. She is afraid. It looks like she won’t make it. But she always finds a way out. she breaks out She defeats the killer.
And in the end, against all odds, she survives.
This resource was created with the support of Merck.
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