Valerie’s Cancer Journey

30 Stories in 30 Days™ // April 2023

At a dental check up in June 2018 for periodontal disease, the dentist found a spot on my gum that seemed suspicious. My periodontist also did not like the look of it and referred me to a maxillofacial pathologist. 

The result of my initial biopsy was lichen planus, a non-infectious inflammatory condition that manifests as white patches on the gums and usually resolves on its own. The pathologist, however, warned me that a percentage of these lesions could turn cancerous.

I had another biopsy a year later, and sure enough, my lichen planus had turned into oral cancer. As soon as I heard the word cancer, my world stopped for a bit. I was a bit surprised, because I don’t drink or smoke. Cancer runs in my family, but we have a history of primarily breast cancer, not oral cancer.

I decided to start cancer treatment with a highly regarded otolaryngologist specializing in head and neck cancer. At my initial visit with this doctor, he was very reassuring and demonstrated his expertise in managing my condition. Although the process was nerve-wracking, I had general faith that things would go okay.

As soon as I heard the word cancer, my world stopped for a bit.

My surgery went well, and the cancer was fully removed with final negative margins. I attended follow-up visits and regular dental checkups every three months, and underwent scans every six months. Everything went well for a couple years, but last year I noticed another spot on my gums.

The spot, pale and slightly bumpy, gradually grew more sore and inflamed as I observed it for a few weeks. At that point, I thought it would not go away on its own. Instead of going through the roundabout procedure of first consulting my dentist, I went back straight away to the otolaryngologist. Sure enough, I ended up having a second cancerous lesion.

Leading up to my second cancer diagnosis, my follow-up scans were not covered by insurance, since the doctor’s reports showed my condition was stable. Therefore, I ended up not getting as many scans as I would have preferred. I can’t help but wonder whether we could have detected my second lesion earlier if I had gotten more scans.

My care team’s support helped me get through treatment one step at a time.

However, I took matters into my own hands to vigilantly monitor my condition. I would constantly check the inside of my mouth using a mirror. I was grateful for the location of my cancer, as I could easily see what was going on and tell right away if something wasn’t quite right.

My second lesion invaded a deeper layer of my jawbone, so my surgeon decided I should undergo radiation therapy in addition to surgery. I went to radiation appointments five days a week for about six to eight weeks. The process of getting irradiated was uncomfortable for me. To prevent you from moving during the treatment, they mold a wet fibrous mesh mask to your face, which dries into a kind of cast. They also put a bite block, a tiny plastic device commonly used by dentists to prevent upper and lower teeth from touching, in my mouth to immobilize my tongue, and I had to try my best not to gag. The setup for radiation therapy took longer than the actual administration, which only took a few minutes!

However, the radiation team did a great job of reassuring me. Whenever I felt uncomfortable or started gagging, they would immediately try to make me feel more comfortable. Even when I couldn’t talk with the bite block in my mouth and had to raise my hand for assistance, they were still extremely responsive to my needs.

To anyone going through a similar experience as me, try your best to take each day one step at a time and prioritize self-care.

During the first few weeks, I felt pretty good, but eventually I started developing radiation burns on the skin around my mouth that made it seem like I was sunburnt. I also temporarily lost my sense of taste. I was able to taste sour foods, but not salty or sweet ones. Most things I ate tasted either like metal or cardboard. I produced thick mucus in my throat and had difficulty swallowing. By the end of radiation, I had an extremely painful sore throat. Everytime I swallowed, I felt like I had a lump at the back of my throat.

Since finishing radiation therapy, I have recovered well and continue to go to follow-up appointments with the otolaryngologist. Now, insurance covers my surveillance scans because I was diagnosed with a second cancerous lesion.

Finding a supportive care team to guide you through your cancer journey is crucial, as they will take care of your mental and physical health.

My care team’s support helped me get through treatment one step at a time. Although I sometimes needed to wait a bit for an appointment, when my appointment time came, I was grateful that the healthcare professionals devoted their time and energy completely to me. I never felt rushed, and they took the time to thoroughly answer my questions. Finding a supportive care team to guide you through your cancer journey is crucial, as they will take care of your mental and physical health.

I also strongly advocate for learning as much as possible about your cancer, and always trying to understand “how” and “why” things are happening. Instead of just taking what your doctors tell you at face value, it can be extremely helpful to read up a bit before your appointments, so that you can work with them more actively to create a treatment plan most suitable for you. There are many resources available nowadays on the Internet, but false information can spread easily, and not all sources are credible. I highly recommend using formally reviewed print resources or online resources by reputable organizations, such as hospitals, universities, or federal agencies. 

…learn as much as possible about your cancer, and try to understand ‘how’ and ‘why’ things are happening.

Discussions about medical conditions and treatments can often be intimidating, but many resources nowadays aim to explain medical information in an easily understandable way for the general public. In addition, don’t hesitate to reach out to your doctor or a member of your care team both during and outside of appointments to ask questions. Your own doctors are ultimately your best resource, as they understand your condition best and can provide you with more personalized answers!

I had initially planned to retire from my job as a sleep technologist and move to South Carolina, but I decided to continue working in New York so I could stay closer to where I get treatment and prioritize my health. Working as a sleep technologist in a healthcare institution, I have witnessed firsthand how important it is for patients to get adequate rest. Even for those not going through a specific healthcare issue, many of us regularly do not get enough sleep. 

In a hustle culture where we often prioritize work over rest, we must remind ourselves that sleep is a necessary process for our bodies to heal themselves. While going through cancer treatment, there were many times, such as during radiation therapy, where I couldn’t sleep well because of discomfort or pain. However, I still prioritized rest, which I believe was crucial to my successful recovery. To anyone going through a similar experience as me, try your best to take each day one step at a time and prioritize self care.