Over the past 3+ years, I’ve met so many incredible people touched by cancer. I’ve met both newly diagnosed cancer patients and 20+ year survivors. I’ve met caregivers and concerned family members & friends trying to advocate for a loved one. I’ve met doctors and surgeons and researchers too. Many of them have asked to guest blog on my site…. but they do not write about resources, they instead have a story to share.
To help them share their stories or tales of triumph, I’m launching this new section on CancerHAWK called “Tale of Triumph” where you can read about their experiences and their perspectives and their journeys. I hope these posts inspire you the way they have inspired me.
*** This video was created by mesothelioma survivor Heather Von St. James. The Mesothelioma Cancer Alliance is a fantastic resource to help anyone touched by mesothelioma.
*** This post below was written by Eva Grayzel, tongue cancer survivor & founder of SixStepScreening.org, a grassroots oral cancer awareness campaign.
What Mom puts herself before her kids? I had the sore on my tongue for a month. Everything else seemed more important. Finally, I got to an oral surgeon who did an incisional biopsy. The results were ‘Hyperkeratosis”, which I was told was a hardening of the skin, like a callous. Nothing to be concerned about.
I had no symptoms for 2 years. Early stage oral cancer is often asymptomatic. You don’t feel it, but it can be detected by the trained eye of a dental professional.
The sore returned. I was bounced back and forth between my dentist and oral surgeon for gels, rinses, shaving of the teeth to reduce irritation, even a plastic retainer that covered my teeth to prevent irritation to the area during the night.
“If it doesn’t improve, come back,” I was continually being told. Why was I being asked to determine whether my condition was improving? Living with it everyday, the changes were subtle. If my dentist or oral surgeon mentioned oral cancer as a possibility, I think I would have been more proactive as the sore continued becoming more painful.
After 8 months, I developed an unbearable earache, and was treated for water on my eardrum. I was waking up throughout the nights in tears.
I returned to the oral surgeon desperate for answers. “Your tongue is small and we don’t want to cut it up unless we have to, but at this point, I guess the next step would be another biopsy.” For the first time, after 9 months of treatment at his office, I thought I should look elsewhere for answers.
A family friend told me to get to a medical center and recommended Dr. Mark Urken, chief of Head and Neck Surgery at Mt Sinai Hospital in NYC. I took the bus into NYC that day not having an inkling that the gross sore on my tongue was cancer. He felt the enlarged lymph node in my neck, looked at the classic ulceration on my lateral tongue, and after doing a minimally invasive procedure, told me I was in an advanced stage of oral cancer.
I went into shock. I ate well, exercised, had no risk factors commonly associated with oral cancer. My surgery included a radical neck dissection and partial reconstruction of my tongue. I was given a 15% chance of survival.
During radiation, when I was teetering on the tightrope between life and death, I thought good and hard about how I would be remembered by my young children. I would not be remembered for sitting through soccer games, but for how I made a difference in other peoples lives. So, when I got a second chance at life, I got to work. First, I started at home with my own children.
How will my children know what I do to make a difference, unless I tell them? We started a tradition with our charity box. Every day we would put money in and say how we brought a little light into someones life, or how someone brought light into our life. We are all role models, performing good deeds every day, but often without a special way to share our kind acts with those we love. The charity box became an opportunity to instill my values of giving charity as well as reaching out to others. We start every family holiday with the passing around the charity box and saying what makes us grateful.
Another family tradition I initiated was blessing my children every night before their goodnight kiss. I wanted them to know how special they were on a regular basis. Why is criticizing so easy and praising those we love most in the world so difficult? Bedtime took 2 minutes instead of two hours because my children felt everything they needed to fall asleep: Praised, loved, and safe. One day, my son asked me who blesses me. I told him the truth: no one. He put his hands on my head that night and blessed me. That gesture made a lifelong imprint on my soul. It doesn’t matter what age you attain, the education you acquire, or the profession you practice, you can bless and enrich another persons life.
To prevent this disease from happening to others, I started SixStepScreening.org to raise awareness not only for the general public but for dental professionals. Also, I wrote two books for children to help them understand a cancer diagnosis in the family. Visit Talk4Hope.com for a free download of sample pages.
Many times I asked myself, “Why me?” A friend gave me an answer: “Why NOT you?” Now, I tell my story professionally. It is more than a mission to educate, but a tribute to those that came before me, and an obligation to those that will follow. It’s been thirteen years since my diagnosis.
Eva Grayzel is Motivational Speaker, Interactive Performance Artist, and Author. She founded SixStepScreening.org, a grassroots oral cancer awareness
campaign demonstrating the Six-Step oral cancer screening. Also, Eva is the author of ‘Mr. C Plays Hide and Seek,’ and ‘Mr. C The Globetrotter’ to be released in May 2013. Visit EvaGrayzel.com.
Thank you Eva for all you are doing to raise awareness of oral cancers. Early detection saves lives! xo