Sunday, October 21, 2012

Eva's Story

Like many cancer advocates I have come to know since founding The Cancer Card Xchange, I "met" Eva Grayzel online. Her cancer story has so many similarities to mine, only hers was not caught in the early stages. Eva's experience led her to become an oral cancer advocate, especially for the importance of early detection. I am grateful to her for sharing her story to educate others.

At the age of 33, performance artist and master story teller Eva Grayzel was diagnosed with stage IV oral cancer on the left side of her tongue. Eva ate well, exercised regularly, and had none of the risk factors commonly associated with oral cancer. She was a non-drinker who had never smoked. She was also the mother of two small children, Elena and Jeremy, ages five and seven. 

Nearly three years earlier, Eva had noticed a sore on the left side of her tongue. She consulted an oral surgeon who removed the sore and had the tissue biopsied. He assured her that the results of the biopsy were negative and told her there was nothing to worry about.

Two years passed with no more obvious symptoms. Then a new sore appeared right over the area where the first one had been removed. She visited her dentist and oral surgeon numerous times over the following nine months and, as the sore on the side of her tongue got bigger, both of them continually told her to come back if it didn’t improve. Eva says, “They were asking me to determine whether or not my condition was improving, even though, in living with it every day, the changes were very subtle.”

Almost three years passed from the time she initially consulted dental professionals about the sore on her tongue before her condition was accurately diagnosed. Ultimately, she had to endure a partial tongue reconstruction, a modified radical neck dissection, and the maximum dose of radiation therapy.

Neither her dentist nor the oral surgeon ever mentioned the possibility of oral cancer. If they had, she would have been more proactive as the sore became more and more painful. Eight months after the sore on her tongue reappeared, she developed an unbearable earache and was treated for what was diagnosed as “water on the eardrum.” After ten days on antibiotics, she was waking up throughout the nights in tears and she returned to the oral surgeon, desperate for answers. He said, “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.”

Finally, after nine months of consultations with her dentist and two different oral surgeons, she decided she needed to look elsewhere for answers. A family friend recommended that she see Dr. Mark Urken, chief of head and neck surgery at Mount Sinai Hospital in New York City.

When she made the two-hour bus trip from Easton, Pennsylvania into New York City on the day of her appointment, she had no inkling that the nasty sore on her tongue could be cancer. Dr. Urken felt the enlarged lymph nodes in her neck, looked at the classic ulceration on the side of her tongue, and told her that he wanted to do a minimally invasive second biopsy. When the results came back, Dr Urken told her in a gentle voice that she had a squamous cell carcinoma. Woozy from anesthesia, she asked if it was benign or malignant. In an apologetic tone, he said: “Eva, you are in an advanced stage of oral cancer.” The date was the first of April, 1998 and, as Eva says, “It was the cruelest April Fool’s joke of my life.” 

If Eva’s cancer had been diagnosed early, it would have been about seven days from surgery to recovery. Instead, seven months of her life passed during her initial surgery, radiation treatment, and recovery. Also, her children were traumatized by her surgery and ongoing treatment. They could barely look at her when she came home from the hospital, and shied away from her touch fearing that she was contagious. Her ordeal continues with a lifetime of dental complications, numerous doctor’s appointments and diagnostic tests, health scares, occasional ringing in her ears, sensitivity to sunlight in her eyes, and other quality-of-life compromises.

During the 13 years since her diagnosis, she has had three negative biopsies and bilateral vocal chord polyps, but no recurrence of cancer. She will have to take Synthroid for the rest of her life to counteract the effects of compromised thyroid function from the radiation. 

After getting a second chance at life, Eva felt it was her obligation to do all she could to prevent the same from happening to someone else.  A champion for early detection, Eva founded Six-Step Screening, an oral cancer awareness campaign for dental professionals and the general public. For her initiative, she was recognized by the American Academy of Oral Medicine and awarded honorary membership.

Now, as she tells her story professionally at dental meetings worldwide, she says, “It is more than a mission to educate. It’s my tribute to those who came before me and my obligation to those who will follow. By publicly sharing my journey to help others, I’m gaining back all the years of life and more that oral cancer took from me. During radiation, when I was teetering on the tightrope between life and death, I thought good and hard about how I would be remembered. I would not be remembered for taking my children to ballet and soccer, but for how I made a difference in other people’s lives." “I share my personal story hoping it will inspire dental and healthcare professionals to perform oral cancer screenings on all their patients, as well as demand them for themselves and for those they love. Together, we can save lives. 

Eva Grayzel
Motivational Speaker, Oral Cancer Survivor, Author