When I was 23 or 24 I went in for a routine dentist visit. My dentist found a white spot on the left side of my tongue. I had no clue how long it had been there. He sent me to see an oral surgeon to have it checked. The surgeon took a sample, tested it, and told me it was leukoplakia-a thick patch of cells which, at least in my case, were non-cancerous. He said if the patch did not go away to consult with an ear, nose, and throat specialist. It went away and I went on with life. Every once in awhile the spot would come back but then go away. It didn’t really worry me since it always went away.
Fast forward a few years when I suddenly noticed a golfball sized lump on the left side of my neck. I went to see my doctor who sent me to an ear, nose, and throat surgeon. (ENT) The lump was an enlarged lymph node. The ENT biopsied it and told me he was assuming it was just an infection that got stuck in the lymph node. I was, after all, too young for it to be cancer. I was 28.
The biopsy came back and it was cancer. But I needed more test because it was not a cancer that would have started in the lymph node. It had to have started somewhere nearby and spread to the lymph system. I asked if the white spot on my tongue from a few years prior could be related. My tongue was immediately biopsied. A few days later I got the call.
What? Seriously? Tongue cancer is a thing? I thought only smokers got mouth cancer. I thought I was too young for cancer! But I’m vegan!! Seriously? Tongue cancer??!!
The next few days were a blur- I had scans, genetic tests to see if there was an undiagnosed genetic disorder linked to the cancer (negative) and I was tested for HPV, which is one of the leading causes of oral cancer aside from tobacco use (also negative). I met with my two oncologists, had a consultation for surgery, and had to quit my job. I was diagnosed on a Tuesday afternoon and in surgery that Friday morning.
My surgery involved cutting a small portion of my tongue out, where the tumor was, and also removing the cancerous lymph node from my neck as well as 14 additional lymph nodes. I have a scar on my neck about 10 inches long and a small dent on the left side of my tongue. The first few days after surgery were hard. I woke up with my tongue completely black and blue and so swollen I couldn’t close my mouth. I had a drain tube sticking out of my neck and I could hardly move my head without severe pain. I couldn’t talk, drink, or eat. The swelling in my tongue went down after about five days but my neck remained unable to move and I lost feeling on the left side. Even now after my radiation has been finished for three months I still have little feeling on the left side of my neck.
The next few weeks I waited for the final pathology from surgery-it would determine what stage my cancer was and exactly what course of treatment I would need. I knew I would be having radiation but chemotherapy was still not a definite.
I had a consultation with a dentist who specializes in patients who have had oral cancer and cancer treatments. She explained to me the radiation would cause damage to the salivary glands on the left side of my mouth. Even the slightest decrease in saliva production put teeth at high risk for developing cavities. (Who knew your spit was so important!) On top of that, the left side of my jaw bone would no longer have as much blood flow. That means if I ever need oral surgery or have some kind of trauma to my teeth or jaw, the jaw bone is at risk of necrosis-essentially the bone could die. To prevent necrosis, I’d have to have hyperbaric chamber treatments before and after. (Still not sure how this would work in the event of a trauma, but my mind wasn’t exactly thinking of that during the appointment.) Bottom line, I have be sure any doctor, especially if I ever have an issue where my jaw bone is involved, knows I had radiation treatments so they can take the necessary precautions so I can, you know, keep my jaw bone.
She laid out what the rest of my life would look like- no more sugar, brushing and flossing after I eat any food, dental visits every 3 months, and nightly fluoride treatments to help prevent cavities from forming.
I finally got the news that my cancer was stage 3. But, a little good news, I would not need chemotherapy. Only radiation. In my mind that meant treatment would be really easy and I also would not need to have my eggs frozen before starting treatment. At this point though, my mind was completely numb. I couldn’t focus on anything. I just kept wondering what I had done wrong that led to me having cancer.
About four weeks after surgery I went in for my radiation planning and to have my radiation mask made. That’s when things started feeling scary. Up until that point I was numb. I would wake up everyday and distract myself with the few foods I could comfortably eat and sit in front of the TV. How was it possible that I had cancer? Nope, it was too hard to think about so I focused on Netflix instead.
My radiation oncologist told me about all of the painful side effects of radiation. How, basically, the skin inside my mouth and throat would be burned away and eating, drinking, swallowing, and talking would eventually become painful and almost impossible. Awesome. My medical oncologist and dentist both told me the same thing. But for whatever reason I didn’t really believe them. I figured it would be more like surgery, recovery would be just a few days and I’d be back to normal.
Around treatment 10 I started to believe them. Eating became really difficult and I could only have water, protein shakes, and soft tofu. Around treatment 15 I couldn’t eat the tofu anymore, I couldn’t drink the protein shakes without heavy pain meds, and even water was starting to burn. By treatment 20 I didn’t think my body could ever heal from the radiation damage. I really thought my mouth would just forever be in massive pain. I finally made it to treatment 30. I was technically cancer free but I felt like death. I had hardly eaten in weeks, I was force feeding myself protein shakes four times a day just to have calories, and I was so exhausted I could hardly walk without holding onto someone.
This is what cancer free feels like? I felt much better when I had cancer.
I finished treatment in November 2016. The skin in my mouth slowly-and I mean slowly- healed. At the end of February 2017 I was back to eating normally. I can move my head again but still experience neck pain and I still have a lot of numbness. Physically I feel like I’m at my new normal. But I wouldn’t consider myself healed. Cancer caused more than physical trauma. It caused a lot of emotional pain that will take much longer to heal.
And thus begins the complicated journey of life after cancer.