Deborah’s Cancer Journey
A cancer survivor shares her journey with tongue cancer. Learn how strength, a solid support system and positive mindset helped Deborah embrace her new normal.
30 Stories in 30 Days™ // April 2023
Before my cancer diagnosis, I experienced tongue irritation for about a year. My dentist and I thought the irritation had to do with a space in my mouth that wasn’t filled after removing a cracked tooth. However, after getting a tooth implant in the summer of 2018, I still experienced pain in my tongue that got progressively worse.
A few months later, at the age of 61, I was diagnosed with tongue squamous cell carcinoma after receiving a biopsy. I first consulted a local ENT doctor, who told me I would need a total glossectomy, or complete surgical removal of my tongue, with free flap reconstruction. I felt a bit apprehensive, since this was a big procedure, so I got a second opinion from another ENT. This doctor referred me to another otolaryngologist based in New York City, who had significant expertise in treating head and neck cancers.
I consulted with other otolaryngologists in the New York area, but ended up still choosing to start my treatment with the first otolaryngologist referred to me. I chose this doctor because he reassured me that I would be fine and that any surgical complications, such as voice changes, would likely only be noticeable to my family.
The supportive and warm company of my family, friends, and pets also helped me get through radiation.
Before undergoing tongue surgery a few months later, the doctors and I weren’t sure how much of my tongue would end up being removed or reconstructed. I felt a bit scared to go under anesthesia without knowing exactly what was going to happen during my surgery, but I trusted my surgical team to thoroughly remove my cancer while preserving as much function as possible. My surgery took only about 3–4 hours. They removed only a portion of my tongue, so complex reconstruction was not required.
The moment in my cancer journey when I felt the happiest was when the doctors told me all the cancer in my tongue and lymph nodes had been resected. I now had a clean bill of health, and felt a huge weight lift off my shoulders. I went home after only staying at the hospital for 3 days. While recovering at home with the help of my family, I focused on relaxing and healing. I was continuously motivated by the thought of getting my life back to normal, and eventually being able to go back to work.
I would strongly recommend that anyone… invest in their physical wellness. Putting in the work now prepares the body for whatever comes its way…
Two months later, I began radiation therapy, receiving 5 sessions of radiation therapy each week for 6 weeks. This was the toughest part of my cancer journey, as head and neck radiation therapy is probably the worst type of radiation a person can get in terms of discomfort and severity of side effects. At my sessions, I wasn’t allowed to move while the radiation beams hit my body, and I felt quite anxious in those moments. I felt relatively fine the first and second week, but my condition declined in the subsequent weeks.
When the side effects got worse, I practiced visualization and put myself in my imaginary “happy place” by thinking about the things that made me happy. The support I received from my husband, four children and their spouses, and grandchildren was a Godsend! I am very fortunate to have had them by my side throughout this difficult journey. I feel especially grateful to my best friend Lori, who drove me to radiation therapy everyday. To this day, she still accompanies me to follow-up appointments along with my daughter Rebecca!
While having a strong support system is important when going through cancer treatment, you also need to create your own happiness and comfort. During radiation therapy, I would listen to the music I loved, including songs from my two sons’ bands. As someone who grew up swimming competitively and went to the gym consistently, I tried my best to continue staying active.
I tried many remedies for dry mouth, but they only provided me with temporary relief. I came to terms with the fact that this is my new normal
During the first few weeks of radiation therapy, I continued exercising. I had to pause in the middle due to the side effects of radiation, but quickly resumed working out soon after completing treatment. I believe my physical fitness played a significant part in the success of my recovery, and am thankful that I lived a consistent active lifestyle. I would strongly recommend that anyone, whether they are currently going through cancer treatment, invest in their physical wellness. Putting in the work now prepares the body for whatever comes its way, and has huge payoffs later in life.
Especially during radiation, I tried my best to maintain a positive attitude. Although cancer treatment can involve discomfort and pain, a strong mindset can make these sensations more tolerable. You can repeat to yourself that this is only temporary, and that if you continue to persevere throughout treatment, you will eventually grow healthier and stronger.
My life is now largely the same as it was before recovering from surgery and radiation, but I must live with some permanent effects of treatment. I have persistent dry mouth, an altered sense of taste, and occasional difficulty eating. I still force myself to eat certain foods, such as fruit, but I do not enjoy it as much because I taste mostly sourness instead of sweetness.
Try your best to adapt to changes and take action to facilitate your health and well-being…
I’m Italian and have always loved to eat and cook, but now I rely more on others to taste test my food and see if it tastes okay. Although it was a huge adjustment to not taste my food as well as before, I still enjoyed eating and found fulfillment in cooking for others. I also tried many remedies for dry mouth, but they only provided me with temporary relief. I came to terms with the fact that this is my new normal, and adapted my lifestyle accordingly. I use moisturizing Biotene toothpaste and mouth spray, and I keep a bottle of water with me at all times.
Although my cancer journey has changed my everyday life, I see all these things as minor inconveniences. After all, my cancer was completely removed, and I can still communicate comfortably with others and engage in activities I enjoy. When going through difficult times, try not to get caught up on the smaller setbacks and focus on what is most important to you.
You may feel down while going through surgery or radiation, but you should applaud yourself for persevering towards the ultimate goal of curing your cancer. Try your best to adapt to changes and take action to facilitate your health and well-being, whether it be cooking certain foods or using a certain toothpaste. Advocate for your own health and know you are stronger than you think!
Interested in Sharing Your Cancer Journey?
For someone recently diagnosed with cancer, reading the stories of other caregivers and survivors can inspire.
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