Jane’s Cancer Journey
Experience the uplifting journey of a tongue cancer survivor, delving into diagnosis, recovery and the vital role of positivity, family support and self-care.
30 Stories in 30 Days™ // April 2023
Several years ago, my dentist in Connecticut looked underneath my tongue and told me I had some white dots that I should get checked out. He told me it probably wasn’t a big deal, though it still might be worth seeing a specialist. But life got in the way, and I ignored it.
A while later, I started getting sores in my mouth, which bothered me. Since the sores were on the inside of my cheek, I assumed that grinding my teeth at night had somehow caused them. I went back to my dentist, who referred me to an oral surgeon. Let me preface by saying, we had so much going on as a family around that time—we were moving, I was robbed, and we were under a lot of stress. So with all this going on, I just felt like, “Really? Now? What else can go wrong?”
They held my tongue down to take a biopsy, which felt a little scary. Cutting into my tongue got a little bloody, but they cleaned me up, and I went on my way. After the biopsy, the oral surgeon called me back a few days later. He said to me, “You know, I don’t even know you, so I hate to tell you this, but you have cancer.” He told me the pathology came back, showing cancer on the inside of my mouth near my teeth and tongue, and asked me, “What do you want to do?” I had no idea what to do, so I asked him back, “Well, what do you think I should do!?”
I’m so thankful for my family for being there for me in those times.
Thankfully, they caught it early enough that it didn’t have a stage yet, and one of my doctors referred me to an ENT in New York City. I felt lucky to live in close proximity to such amazing doctors, especially after sitting in the waiting room at the ENT’s office, hearing how people flew in from all over the country to receive quality medical care.
The doctor worked very thoroughly and quickly, and he checked my lymph nodes in my neck, which he said all looked fine. He scheduled me for a partial glossectomy surgery on Halloween—in other words, surgery to remove a portion of my tongue. I had the operation and it went well. Even though the cancer was on my tongue, I had lymph nodes in my neck removed to ensure that the cancer hadn’t spread to other areas. They also harvested some skin from my left thigh to put in my mouth to help restore function. The bandage on my tongue to keep that in place felt like a tea bag and felt uncomfortable throughout my recovery.
The hardest part for me was the week in which I had the bandage on my tongue. It drove me crazy, because I couldn’t eat normally but felt so hungry. I lost a ton of weight after surgery because I couldn’t eat, and I didn’t like the Ensure nutrition shake they advised me to drink. I wish they had a healthier, cleaner, more organic option to feed patients, because I didn’t like knowing that the ingredients consisted of things like corn syrup. But eventually my tongue healed, and my eating became more normal. I started to gain the weight back.
I’m so thankful for my family for being there for me in those times. My husband provided so much help in asking all the right questions and standing up for me with the doctors—he’s my cheerleader. He also would go to the farmers’ markets and sell my product for me when I felt my worst, so that my business would remain successful. My daughter acted like a nurse; she would look at my tongue, and nothing phased her. Everyone had their role, and I couldn’t have done it without them. They brought me flowers and cute pajamas, and all those little things kept me going.
Trust your doctor, get opinions, and most of all, listen to yourself.
At a follow-up visit with my surgeon, he told me that I should have radiation to ensure my cancer doesn’t come back. For background, I’m in the food business. I knew radiation would likely ruin my ability to taste, and I need my taste buds for my business. I did my research, and my head and my gut both agreed I didn’t want to do this. I agreed to monitor closely instead, by getting follow-up CT scans several times a year. I got pretty claustrophobic in those machines, but we stuck to our scan schedule. And here I am, thank God, without radiation and cancer free.
I still get thirsty when I talk too much and feel tightness in my neck from the removal of lymph nodes, which still bothers me. It doesn’t hurt, but I constantly feel like I have to stretch it, since it just feels tight. I couldn’t lift my arm because of the tightness, and went to physical therapy. I did a bunch of exercises, like “huffing” and stretching, which significantly improved my function and strength. I also found a masseuse that I would go to every other week, which helped me feel more comfortable. I didn’t know I would need this after surgery, and wish there was more integrated care and communication between specialties in our health system to make this overlap more seamless.
Ultimately, to anyone going through this—just stay positive. You’re going to get through this.
I’m the biggest advocate for taking someone with you to these appointments. I felt in shock throughout the whole journey, and it was so helpful to have someone there who listened intently and understood what the doctors said, especially when I couldn’t process it myself. Don’t become “Google doctors,”—in other words, don’t rely exclusively on Google for medical knowledge. Trust your doctor, get opinions, and most of all, listen to yourself.
I can’t say my experience with tongue cancer really changed who I am. I love to cook; doing so and maintaining my sense of humor got me through many hard times. Making Thanksgiving dinner and Christmas meals motivated me, and my daughter moved cities at the time. These things took my attention off myself and allowed me to channel my energy into other things.
Ultimately, to anyone going through this—just stay positive. You’re going to get through this. The tongue is a sensitive part of the body, but you just have to believe that you will get through it. For family members of people going through this: try to perform small acts of kindness for your loved ones. If you can do something thoughtful, like bringing them flowers or having someone come to the house to give them a manicure, it will make a huge difference.
Interested in Sharing Your Cancer Journey?
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