As told to Nicole Audrey Spector
It started with a bad toothache — deep and throbbing in one of my molars on the upper-right side.
I was only 25 years old and totally healthy. How bad could it be? At worst, I probably needed a root canal.
I went to the dentist right away. She examined my mouth and took X-rays but found nothing amiss. No cavities. No cracks. Not even gum recession.
“Sometimes these things just happen,” Sshe said. And that was that.
Over the next few weeks, the toothache worsened and the pain spread throughout my jaw and face. It was so bad that I couldn’t sleep.
On a quest for answers, I went to more medical professionals. One doctor thought it could be a TMJ disorder. Another thought it was a sinus infection and prescribed me antibiotics.
Six months passed. The excruciating pain — pain that none of the doctors I consulted with addressed, let alone treated — persisted.
Finally I met with a neuropsychiatrist who took my pain seriously. She prescribed pain medication, and I returned to the dentist I’d first met with, determined to get to the bottom of the issue.
The dentist took more X-rays, and this time she found something. It appeared that part of the bone in my upper right jaw was missing. The dentist said she’d never seen anything like it and didn’t want to get anywhere near it. She referred me to a periodontist.
The periodontist was also stumped, so he sent me to an oral surgeon who detected a mass near my molar. He ordered a biopsy, which involved removing the molar and a section of the mass. During the procedure, he applied a numbing agent, but nothing dulled the pain. I can still remember, with chilling clarity, the sounds of the pulling and the tearing of the roots.
I absolutely love horror movies, but living out my very own version was unbearable.
The biopsy came back negative for cancer — but the rest of the mass still had to be removed. So I went to a head and neck surgeon and underwent a maxillectomy, during which I had four teeth extracted and part of my soft palate (the back of the roof of the mouth) removed. A prosthesis was custom-made to plug the hole in my palate and replace the teeth I lost so I could speak, eat and drink normally.
The supposedly benign tumor was sent out for biopsy and this time, the biopsy revealed terrible news: I had salivary gland cancer.
After my cancer diagnosis, I started a 30-day radiation treatment regimen. It was next-level painful and sometimes I felt really alone. But I was determined to end my own personal horror movie and get rid of the cancer.
As I was healing from treatment, I found out — on Valentine’s Day — my husband was cheating and we went through a divorce soon after. Clearly 2018 was not my year.
The radiation killed the cancer — but not for long. A year later, during another stretch of unimaginable pain, a scan revealed that the cancer had returned.
It was back to the operating table where another seven teeth were removed, along with my hard and soft palates (the entire roof of my mouth). Then I went through another 30 days of radiation therapy.
2019 (Photo/Eric A. Kleinsasser)
After all that, it finally looked like the pain was coming to an end and that my life was returning to me in full. I was able to sleep and exercise and resume focus. I went back to school and got my master’s degree. I met and became engaged to my new partner and true soulmate, Eric. I was joyous for the first time in so long, and I had two amazing cancer-free years.
Unfortunately, this past April, I noticed an indentation on the right side of my face and soon learned that the cancer was back.
I will need surgery a third time, . Tthis time to remove part of the outside of my face. I will need skin grafts taken from my leg. On one hand, I can’t wait for this surgery because I need this pain to stop. But I’m also afraid. I have only recently become comfortable with looking at myself in the mirror after losing so much of my mouth and so many teeth.
To make matters worse, after being on long-term leave, I was let go from my job and lost my disability benefits. I’m fighting to get them — and Social Security benefits (as are my doctors) — but in the meantime, Eric, a high school chemistry teacher, and I are a single-income household. Money is tight.
People ask me all the time how I do it. How do I keep going through all this pain and trauma? How do I still smile through it all — when it sometimes really hurts to smile?
Well, I’ll tell you: I have the most amazing people in my life, and some of those folks are fellow head and neck cancer survivors. I’ve become deeply involved in head and neck cancer advocacy work and frequently share my story and bond with others who can relate. And of course, I have Eric. The man I’m marrying this year. The man with whom I know I will have a child. I can’t wait for that.
My love of horror movies has also, weirdly, helped me. Do you know that moment when the character is stranded in the woods with no way out? The killer is after her and she’s got nowhere to turn, no way to escape. She’s afraid. It looks like she won’t make it. But she always finds a way out. She breaks free. She defeats the killer.
And in the end, against all odds, she survives.
This resource was created with support from Merck.
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