It’s hard to express all that has happened in my life since the doctor walked in and said, “Well sweetie, it’s cancer.” No one is ever prepared to hear those words. Your mind starts to wander in a million directions, and you hear key words from the doctor, such as surgery, radiation, chemo, staging, CT scan, PET scan, MRI, pathology report, and the list goes on with words you will become very familiar with in a matter of days.
I recall a few basic things she said to me that day: “You have tongue cancer; half of your tongue will be removed; part of your arm will be harvested to make a new one; they will take a skin graft from your leg; you will have a neck dissection, tracheotomy, and a feeding tube.”
I was paralyzed with an endless list of questions: How am I going to tell my children?
What if I die? What if I can never talk again, or eat again? What about my job? How can I afford this? Who will help me?
For the first few weeks I moved from one doctor and testing place to another, completely overwhelmed. Finally, the day of the big surgery arrived on April 30, 2012. I was told it would be a 10- to 12-hour surgery, and 8 to 10 days in the hospital, with only a few days in ICU.
To cut this short, I’ll only mention things were very touch-and-go, including a second surgery, and twice as many days in the ICU.
The pain was unbearable; I was unable to speak or move, and much like a patient in a coma, I was hidden inside myself: no one could hear my cry or know how I felt.
My Surgeons “Fixed Me”
I wanted to give up, but then I felt the presence of God in the room. God was my comfort and the only one I could speak to without words, and who could hear my silent cry. My friends and family prayed for me, God comforted me, and my surgeons “fixed me”–together they all saved my life.
Almost a month later, my body still very weak, I struggled to speak and could not eat or drink, but my next battle had to begin—30 treatments of radiation.
Devastating Side Effects
The pain of radiation and the mental toll it took was possibly worse than the surgery. At least with surgery, every day I was improving, but with radiation, every day was worse than the day before, which seemed unimaginable.
Toward the end, I just cried, and my friends picked me up and practically carried my 97-lb weak body to each treatment. I recall my young children finding me in my room crying, because I did not want to endure another day of increasingly worse pain.
They encouraged me, saying, “Mom, you can do this,” as they helped me out of bed. It was a long, hard battle, which gave me lifelong side effects that could have been avoided with early detection of the cancer.
Recognizing Oral Cancer
I praise God I am not only alive, but I can talk, laugh, eat most things, and smile. I am grateful for my life, and hope to spread awareness about oral cancer, and the importance of cancer screening.
My cancer started as a small spot on my tongue, much like a canker sore. Several doctors thought nothing of it, and felt I was not at risk, because I was 35, a female, a nonsmoker, not a heavy drinker, and had no history of family cancer. They were wrong, and my late diagnosis is the reason my battle was much worse than it should have been.
I now partner with the Oral Cancer Foundation and share my story to inform others of the warning signs: any sore in your mouth, ear or jaw pain, sore or hoarse throat, or a lump that does not go away in 2 weeks should be checked out by a specialist right away.
Oral cancer has been on the rise for 10 years, and nearly 50,000 people are expected to be diagnosed with it this year. I fall into the 7% of people with unknown causes, but HPV infection is now the number one cause of oral cancer, affecting people aged 30 to 45 at an alarming rate.
The fatality rate after 5 years is only about 43% for those diagnosed in the late stages; therefore, early detection is key to survival, with an 86% cure rate when diagnosed early. I advise people to have an oral cancer screening every 6 months, and to spread awareness among friends and relatives.
When I realized I may lose the ability to speak, I started a blog on mylifeline.org/paigelewis about my experiences from the day of diagnosis. My blog is a raw look inside the mind of a patient with cancer. I received support and help when people reached out to me through mylifeline.org, and I was able to keep my loved ones informed with accurate and current updates.