My biggest piece of advice is to religiously follow your care team’s protocol before, during and after treatment. I was instructed to do exercises for my tongue, mouth, and jaw, to use fluoride on my teeth, to drink plenty of fluids, and to gain weight—which can be fun. They give you these protocols because they understand the ins and outs of treatment. I was amazed at how accurately the doctors could pinpoint when certain treatment-related symptoms would occur. For instance, they knew exactly when I would no longer be able to taste food normally. On their predicted day, it was like a switch went off in my taste buds. I remember trying to eat a meatball, but the second it hit my lips, it tasted horrible. For months, I only ate plain farina and pastina.
The doctors also told me that treatment is cumulative, that I would feel worse when my treatment ended—and they were right. I finished treatment in April, and I felt terrible all May and June. But I do not want current patients to be discouraged. There were times I went with my friends to restaurants, and I wasn’t able to eat anything. However, during those outings, I knew I would get flavor back eventually, and I did. It was a slow process for my body to gain back strength, weight, and a desire for food. It took a year for meatballs to taste good again, and pizza still doesn’t taste fully normal, but I am finally enjoying my meals.
Throughout treatment, I also maintained a positive outlook and believed I could have a full and meaningful life after my cancer diagnosis. Even though I experienced loss of appetite, exhaustion, nausea, 2 trips to the emergency room, and everything that comes with radiation and chemotherapy, I was still able to find humor in situations to help me through the day. “Look good, feel better” was my mantra. Even during my worst days, I continued to apply my favorite foundation, bronzer and under eye makeup, which gave me a lift. I also had someone drive me to the hairdresser whenever I was feeling up to it, and treated myself to a blowout. I was lucky that the cisplatin did not cause hair loss for me.
During my cancer journey, I also had to carefully choose who would be my support network. Prior to my diagnosis, I was helping to care for my parents. My mother has dementia and my father was mentally alert, but physically failing. We were such a close family that had shared everything, but in light of the situation, I made the decision not to tell my 91-year-old dad. Because I didn’t want a lot of other people knowing something that my dad did not, I chose to only tell my grown sons, brother, cousins, and a handful of friends. One week after my treatment ended, my dad passed away. This validated that I had made the right decision for our family. For some, it may be difficult to do what I did. But I found it calming to share my diagnosis with as few people as possible.
Throughout my journey, it was important for me to trust my doctor, keep a positive outlook, and have my select support group. These are the things that worked for me, and I hope they will work for other patients.
Will You Share Your Journey?
April is Oral Cancer Awareness Month. As part of that theme, we post stories written by oral cancer survivors, caregivers and medical professionals for our 30 Stories in 30 Days™ campaign. The insights they share can help others along their journey.