Half of my tongue is gone, but I couldn’t be happier

I’ve had four of my back teeth removed, the floor of my mouth rebuilt and more than half of my tongue replaced with an arm muscle. But other than a slight lisp and some scars on my neck and forearm, there are no obvious signs that I once had stage IV squamous cell carcinoma, a type of oral cancer.

Recovery from my oral cancer treatment was not fun. It was hard and scary and painful. But it was also worth it.

That’s why I want to share my story both here and through myCancerConnection, MD Anderson’s one-on-one cancer support community. I want other people facing a similar diagnosis — particularly young mothers — to see that there’s a bright and happy light at the end of that long, dark, uncomfortable tunnel.

My oral cancer symptoms

My first symptom of oral cancer was a small, white patch on the underside of my tongue. It randomly appeared in 2011, and was very sensitive and painful. Since I was only about six weeks away from delivering my second child, I assumed it was one of the million weird things that can go on in your body during pregnancy. 

When it didn’t go away in a week or two, I mentioned it to my OB-GYN. She said it wasn’t pregnancy-related and sent me to a dentist, who said it wasn’t a normal mouth sore and sent me to an oral surgeon. The oral surgeon did a biopsy, which came back negative. He said it was a callus and would resolve on its own.

I delivered my daughter a few weeks later and lived with that patch on my tongue for the next five years. It only bothered me every few months, so I ignored it.

My oral cancer diagnosis

In May 2016, the patch suddenly started hurting. It also seemed to be getting bigger. My general practitioner sent me to an oral surgeon, who did another biopsy. The results showed nothing, but he told me the patch was “moderate dysplasia,” a pre-cancerous condition. Because my tongue had become so painful, he suspected it was already turning into cancer and sent me to an ENT.

The ENT did a more comprehensive biopsy while I was under anesthesia. He removed three pieces of my tongue, from much deeper down in my throat. When I woke up, he told me that I had squamous cell carcinoma of the tongue, a type of oral cancer.

I wish I could say I was stoic or brave, but the truth is, I was terrified. After being reassured five years earlier that I was fine, now I had cancer, and it was stage IV.

Traveling to MD Anderson for the best oral cancer treatment

The ENT said MD Anderson was the best place for treating squamous cell carcinoma, and my online research made clear that MD Anderson has the world’s best Head and Neck Center. But I didn’t think I could travel back and forth to Houston. My husband and I had just moved our family to northern Mississippi for a new job, and I was worried about how we’d manage.

My parents and siblings told me to go. They’d take care of the kids, even though they lived in four different states. I made an appointment.

My oral cancer treatment

At MD Anderson, my world-renowned oncologists recommended three rounds of induction chemotherapy, followed by surgery and radiation combined with more chemotherapy.

Dr. Randal Weber removed the tumor from my tongue on Oct. 17, 2016. Then, Dr. Alexander Mericli rebuilt my tongue and the floor of my mouth using part of my left forearm muscle. My medical oncologist, Dr. Merrill Kies (now retired), was in charge of my chemotherapy. And Dr. David Rosenthal was my radiation oncologist.

The hardest part of recovery: learning to eat with an ‘arm-tongue’

My new “arm-tongue” felt like a foreign object in my mouth when I woke up from surgery. It was so swollen that it stuck out for about two weeks. I couldn’t close my mouth completely and had to use a bite stick to keep from damaging it accidentally.

Even after I could close my mouth, speaking was hard for the first few days. But it came back a lot faster than I thought it would. For one thing, I had an entire team of specialists helping me, including speech pathologists, physical therapists, dentists and dieticians. I also did a lot of swallowing, neck and tongue exercises daily, which helped a great deal.

The hardest part of my recovery was learning how to eat again. I started with liquids and pudding-type food, then soft foods and so on. But I had to pass a swallowing test first, which I wasn’t able to do until six weeks after the surgery. I continued to get most of my nutrition through a PEG tube inserted in my stomach. I kept it in for about seven months, until I could maintain my weight for two weeks eating only by mouth.

I’m used to my new tongue now, so I can eat just fine, though it’s not always pretty. I just have to take really small bites, drink liquids to help me swallow dry things and only chew on the side of my mouth that has teeth and a “real” tongue. My tongue is tethered to the bottom of my jaw now, too, so I can’t stick it out. But I’m used to it, so it doesn’t really hold me back. I teach classes and give huge presentations at work. It’s not very noticeable.

Making the best of my new normal

I lost most of my taste buds through surgery and radiation, so now I can only taste really strong sweet or sour flavors. That makes it hard to get excited about food.

But I’ve been cancer-free since finishing treatment in December 2016. So, there is, indeed, a light at the end of the tunnel. My goal now is to live the best life possible. I’m grateful to have the opportunity.

I live more in the moment now and spend more time with my family. I also try to remember that life takes its own path sometimes, and it’s not our fault if it’s not what we planned. You can get tongue cancer even if you’ve never smoked. You can have half your tongue and the floor of your mouth removed and replaced with an arm muscle (what?!) and yet still eat, speak and be awesome. 

I will always have a lisp and issues with swallowing. I will always eat best when no one is looking. I will never kiss my husband in quite the same way again. And I will never look in the mirror and see the person I expect to. But in spite of all that, I am glad to be alive. I’m proud I made it, elated with my life and happy to be where I am today.

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