My story starts in May 1992 with the birth of my son. A few months prior I thought I had chipped a tooth—when running my tongue against my teeth I felt pain. After giving birth, I decided to address it. I went from a dentist to an oral surgeon and then to my ENT/cancer surgeon. Turns out, there was a dime-sized tumor on my tongue—later diagnosed as squamous cell carcinoma.
I was shocked. I was 27 years old. I didn’t drink, smoke cigarettes, chew tobacco—nothing like that. To this day, I don’t really know the root cause.
My first surgery was a partial glossectomy in 1992. It was scary, but necessary. With the help of my husband and family, I got through it. The following year, however, my doctor found that one of the lymph nodes on the left side of my neck was swollen—the same side as the tumor had been on my tongue. So I had to have a radical neck dissection. I got through that okay, but I was determined to get back to work as soon as possible.
I continued to visit my doctor, but it seemed we were through the weeds. My doctor would occasionally take biopsies of my tongue to make sure that what he was seeing was scar tissue and not cancer or dysplasia.
My husband was the best. He was there for me every step of the way. In retrospect, I feel so bad for the pain he endured when he was watching me going through everything.
Fast forward to July 2020. My tongue started hurting me again! So I went back to my original ENT whom I have known for 28 years. He gave me some oral paste since he didn’t think it was cancer and off I went. September rolled around and it still hurt, so he finally biopsied it. There it was: squamous cell carcinoma, back again.
This time, the cancer was “out of his league.” So he referred me to a doctor at a well-known hospital in Philadelphia. My new doctor said he would have to remove half my tongue (a hemiglossectomy). My son and I looked at each other, we were stunned. But it was necessary, I had cancer again! The surgeon planned to take skin, muscle and nerves from my left arm to rebuild my tongue—performing another modified radical neck dissection on my right side.
I’m still physically and mentally recovering from the side effects of that surgery. It lasted 8 hours and put me in the hospital for 7 days during the pandemic, but it went well. One of my vocal cords was paralyzed in the process, but I received an injection for it last month and it worked! I still have some facial paralysis, which may or may not eventually work its way out, but the cancer is gone.
I can talk, I can eat and the donor site from my skin graft healed nicely. My tongue sometimes gets in the way. It’s a little bulky—but still, I have one. The removal of the ulnar nerve has left my hand very sensitive and I can’t type any more, but again—I don’t have cancer! I don’t know what caused my cancer. All I know is everything happens for a reason. We learn from the things that happen to us and so can others.