In May 2015 I was diagnosed with Stage 4 Oral Cancer. I never smoked. I was always a social drinker. I ate a healthy diet. I saw my doctor every year for a physical and got regular dental check-ups. Plus, oral cancer strikes many more men than women. Nothing in my background could have signaled a warning. There were no red flags. I simply got up one morning thinking I might have a problem with allergies, and I went to bed that night fearing I might die.
The day of my diagnosis, I felt as if a truck was pinning me down. Until then, I had enjoyed a full life, and I loved it. I didn’t have a bucket list to fill. I had travelled extensively and seen the world. I had much love in my life, including my three wonderful children. I had passions—for making art, for cooking, for spirituality—and I wasn’t ready to let it all go.
I cried a lot that day, and I got angry. Then I cried some more. Finally I took a hard look at my options:
I could do nothing and die a painful death.
I could undergo a neck dissection to remove lymph nodes , a three-quarter glossectomy, and a tracheotomy. The surgery would rob me of my power to speak, swallow, eat, even drink, and I had no idea if or when I would recover any of these basic functions of a normal life.
Before that fateful day, I didn’t know much about oral cancer, though I am well-educated, with a Masters degree from a top school, and fluent in four languages. When I shared my diagnosis with family and friends, none of them had much of an idea about this type of cancer either.
In those first days, I struggled to come to terms with my diagnosis. Over the years, I had a fair amount of dental work done, and I went to the dentist every three months for checkups. How, I thought, could my dentist have missed the onset of this horrible disease? How could she have missed this monster growing in my mouth? Why was this cancer caught so late? How could this happen to me?
Not even two years earlier, the same ENT who diagnosed me with cancer had done my sinus surgery, and I was fine then. That told me that this cancer had travelled quickly. I realized then, that no one could have seen this coming.
In preparing for the surgery, I researched the side-effects of radiation, and learned that the procedure could destroy my teeth. Besides all the other indignities of chemo and radiation, I now had to make peace with MAYBE being toothless. Would I ever speak or eat again? What did it all mean for my future?These were among the many fears I faced, and looking back, I dearly wish I could have spoken with someone who had survived oral cancer treatment. But there was no one.
That is why I wrote the book about my experience, and that is why I speak to any group that will have me and meet with anyone who needs to hear my story.
Though my experience is helpful to other oral cancer patients, more education is necessary. Dentists have a responsibility to talk with their patients about this cancer. Raising awareness about risk factors, lifestyle changes, and early detection is vital.
Why not inform each of your patients at their yearly screenings about oral cancer just as you do about gum disease and flossing? Other cancers have been widely publicized. People are learning about the risk factors and the importance of early detection. Why should oral cancer be treated any differently?
I have yet to see any pamphlets or posters on oral cancer in any dental office. As far as I know, the most attention oral cancer gets in the dentist’s chair is a quick check by the hygienist, who peeks underneath the tongue and checks the lymph nodes.
No one knows why some people get cancer and others do not. And no one knows why oral cancer attacks someone like me, who has none of the risk factors. But you, the healthcare providers, and we, the survivors, must do all we can to demand and support research, raise awareness, and spread the information that we do have on this terrible disease. Several decades ago, the causes and prevention of breast cancer were still a great unknown. And look where we are today.
It all starts with education and taking care of our bodies inside and out, and that requires a team effort. Today, I feel healthier and stronger than I have ever felt in my life. With the help of my doctors, dentists, therapists, nurses, and caring family and friends, I have slayed the dragon.
Know your enemy, the saying goes. That is why I am on a crusade to drag oral cancer out of its dark cave and into the light. Awareness is the first step, and if you are a dentist, you are on the front line.. Please make it a priority to educate and screen your patients. Conduct a thorough screening with each checkup. Educate your patients about the risks. Send them home with a pamphlet of information to share with others. Stay on top of the latest research. Be vigilant and advocate for your patients. They need you. We all need you. Because we cannot fight this battle unless we team up. With your help, we can beat this monster.
In the book , Say Yes To Life I share many life lessons I learned about fighting the cancer monster. I had to learn to not feed the fires of fear and chaos,how to set strong boundaries,how to develop my sense of gratitude how to stay positive and in the present when negativity threatened to overwhelm me.
I am not thankful for cancer yet it taught me A LOT. Most importantly to live life to the fullest we get no reruns. Having had cancer and being a survivor of Oral Cancer does not define me. That was one challenging chapter. The next chapters are what is important and by raising awareness I hope that no one else faces this monster and if they do they have been educated .Lets all do our part. Education and Awareness are the key!