Friday, April 12, 2013

A Survivor's Story

In honor of Oral Cancer Awareness month, we're bringing you a story from Eva Grayzel, who is a nationally recognized professional storyteller and performance artist who was diagnosed with Stage 4 oral cancer at age 33. She was never a smoker, and a nondrinker. This is her story.

What Mom puts herself before her kids? I had a canker sore on the left side of my tongue for a month. Everything else seemed more important. Finally, I took the time to see an oral surgeon. "You have two choices - keep an eye on it and hope it heals, or have it removed with a scalpel." I had it out, and the biopsy was negative. 

I had no symptoms for two years. Then the sore returned right over the biopsy site. Once again, it was present for about a month. I returned to the oral surgeon, who reviewed my pathology report and said it was probably the same thing. 
"The results of your biopsy show a hyperkeratotic lesion, a hardening of the skin, like a callus. Nothing to be concerned about."
"Yeah, but this sore won't go away and it really hurts. It's uncomfortable to eat and talk."
"Rinse with salt water, use this gel, and if it doesn't get better, come back."

Now you tell me why the oral surgeon was suggesting that I monitor the health of my tongue! What do I know? I believed it was getting better. I was a good patient, rinsing and using the analgesic gel to relieve the pain from the sore. It didn't hurt quite as much. But, after four weeks I took a good look at the sore and realized it might be getting worse, so I made another appointment with the oral surgeon. 

"Hmm. This has to be caused by constant irritation. Make an appointment with your dentist to have your back molars shaved down They are sharp and may be preventing the healing process. And be sure to come back if it doesn't get better."

I had my molars shaved down.

I really believed it was getting better. It didn't look as red. The white center seemed to be a little smaller. Until one day, I was feeling the gnawing pain in my tongue, took a look under a bright light and realized that it was definitely not getting better. If anything, it looked worse. I called the next day for another appointment a week later. I asked to see a different oral surgeon in the practice who might have a different opinion. 
"Shaving the teeth didn't seem to be enough. You must be biting or gnawing on your tongue at night."

Once again, I really believed the sore was getting better. After another couple of weeks, I developed an earache on the same side as my tongue sore. It was the worse earache I ever had, and actually brought me to tears, even in the middle of the night. So, I saw an ENT who told me I had water on my eardrum. 
"Whenever my tongue hurts, my ear hurts," I told him.
He looked at my tongue. "I don't know what's on your tongue. Has an oral surgeon seen this?"
"Sure," I replied. "I just thought you might have another idea."
"Not really. That is his field. But I will take care of the water on your eardrum."

Time went on and after I had seen two oral surgeons, two dentists, a periodontist, and an ENT, a friend suggested Dr. Mark Urken, a specialist in lumps and bumps in the head and neck region. I didn't know he was an oral oncologist.

After nine months of trying to heal the sore on my tongue, I was finally going to get an answer. I took the bus into NYC for my biopsy on April 1, 1998. Why the bus, when this could be serious? Well, I had no idea, not an inkling that my condition was even remotely serious. My mother met me at the hospital to take me home. She knew something was up when the doctor waited for her to be at my side when he spoke to me. April Fool's jokes were rampant all around, yet the news I heard was no joke.
At first, Dr. Urken used some enigmatic words to describe my condition. I was still a little out of it from the anesthesia. Maybe that was a good thing. He said my lymph nodes were enlarged, and he used the word "carcinoma," but I did not know if that meant benign or malignant. When he looked down and answered in the affirmative, "You are in an advanced stage of oral cancer," I knew had to get home, face my family, and prepare for the invasive reconstructive surgery that lay ahead of me. Twenty-four hours later, I pulled myself up and forged on. I was a cancer survivor now. I had to live up to the title.

At age 33, I was diagnosed with stage 4, squamous cell carcinoma on the lateral tongue. I never smoked, rarely drank alcohol, and never used mouthwashes containing alcohol. I had no risk factors. But, no one is at "no risk for cancer." I endured a modified radical neck dissection, and one-third of my tongue  was reconstructed, followed by 6,000 rads of IMRT.
I'm now a 10-year survivor! Three negative biopsies, a vocal cord polyp, but no recurrence! Lucky me! Due to my talented surgeon and a local radiation oncologist, who was up on the latest and had an operating IMRT when tehre were only 12 of them up and running in the country, and my support network, and my own strength, I pulled through a most debilitating and public disease that you cannot hide under clothing. My work is cut out for me.

With an extraordinarily successful tongue reconstruction and neck dissection, she branched into motivation speaking, telling her story in a way only a professional storyteller can. From the profound insight she gained, she inspires audiences to embrace life. Please visit her website at

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