I have included dates to give you an idea of how long it grew on my tongue and how fast the tumor grew before surgery. My ENT surgeon said that there is no way of knowing how long it was cancerous without doing testing at the time the pictures were taken. He also said it probably started as lesions that were non-cancerous. In retrospect I wish I had seen an ENT much sooner to get a biopsy so that we could have caught it early. Then my cancer wouldn’t have grown so big and my surgery and treatment wouldn’t have been as invasive. Early detection is very important with cancer. I admit I was afraid and in denial that it was anything serious given my age and medical history. I was not a smoker or a heavy drinker and I had no family history of oral cancer.

May 21st 2013

This was taken at a Periodontist’s office where my dentist referred me after a routine cleaning appointment. My dentist told me that I was too young and I didn’t fit the demographic for oral cancer so he referred me to someone else to take a look. The Periodontist told me it was a possible fungus and prescribed me some medication to clear it up. It was painful sometimes. Spicy foods seemed to make it flare up so I avoided them. It seemed like the pain would come and go.

March 31st, 2014

I continued to have pain off and on for another year. At my next cleaning appointment my dentist recommended me to a dentist that specialized in Tempomandibular Joint Disorder (TMD.) I had a history of clinching/grinding my teeth which made my Tempomadibular Joint (jaw) hurt. I even wore a night guard to bed to help with the headaches from this. Both my dentist and the TMD specialist thought that I was
chewing/traumatizing my tongue in my sleep. My tongue was hurting more at this point and I was searching for answers. I didn’t really believe that I was chewing on my tongue because I didn’t feel myself doing it during the day and I wore a night guard at night which would have prevented me from being able to chew on it. I was not the specialist though so I accepted their answer and moved on.

In December 2014 through January 2015 I had a bad case of bronchitis that I just couldn’t seem to get over. I was tired all the time and food was getting harder and harder to eat. In retrospect, my immune system might have been compromised due to the cancer forming in my body. 

In February 2015 I went back to the dentist and based on the information from the TMD specialist, he thought I was chewing/traumatizing my tongue. He made a new mouth guard for me which arrived in March.

March 9th 2015

This is the day I received my new mouth guard from the dentist. I was in quite a bit of pain. I am wearing my new mouth guard in these pictures. I decided that if I was doing this to myself, I should wear my mouth guard as much as possible to prevent further trauma so I could heal. My dentist recommended that I contact him in a few weeks if my symptoms didn’t improve. They did not improve.

March 28th, 2015 These pictures show how fast my tumor was growing and how swollen my tongue and under my tongue was.

I met my surgeon on March 31th, 2015. I will never forget the words he said to me. “You have a week to get your affairs in order.” In one week I was going to have a surgery that would change my life forever. I felt numb. I had spent days researching and trying to find information on the internet about oral cancer. I could find research articles and pictures of tumors but I couldn’t find anything to comfort me like a support group or an informational website to prepare me for what was to come. I finally found one YouTube video that explained the surgery and treatment. I saw that this woman had survived and was speaking again and living her life cancer free. This gave me hope and it was then that I decided to use my experiences to give others hope and answers. You can find the video I am referencing in the Speech Therapy  section of this website.

The next day I cut my hair to make it more manageable after surgery. I also dyed part of it pink. I used to have pink hair in college and it made me happy so I decided to add some happy back into my life.

Before my surgery my family gave me a door bell. The button was kept in a lanyard around my neck so I could press it if I needed anything since I anticipated that talking or yelling would be difficult after surgery. The bell portion was kept in a central location so it could be heard throughout the house. This was actually very helpful during my recovery.

We also went out for crab legs before my surgery. Crab legs are my absolute favorite. My mouth was really sore by this time and I wasn’t allowed to take any pain medication before surgery but I enjoyed them the best I could. I wasn’t sure when or if I’d be able to eat them again.

These pictures were taken the morning of my surgery. I named my tumor Squatch and this was the day my surgeons squashed Squatch. My cancer was called Oral Squamous Cell Carcinoma which always sounded like Sasquatch to me. Hence the name Squatch.

Initially my doctors staged my cancer at stage 3. By the time they did the surgery a week later it had grown to stage 4a meaning that my tumor was beginning to invade nearby structures. My tumor was 3.7 cm long and 1.5 cm thick. I had a negative 3mm margin around the tumor that they cut out. This means that they got it all and I did not have to have additional surgery. They removed 50% of my tongue, otherwise known as a hemiglossectomy and they performed a tongue flap which means that the tip of my tongue is now sewn to the back right side of my mouth. They also removed saliva glands from the floor of my mouth and completed a neck dissection where they removed levels 1-3 of lymph nodes from my neck for testing. They came back negative, meaning the cancer had not spread to that area. They also tested my tissue for HPV which came back negative. I have no history of tobacco and alcohol abuse and no genetic predisposition to oral cancer. My cause is unknown.

Here I am with “Mr. Thirsty,” the suction machine, and a toothette sponge trying to clear my mouth. I drooled so much and I was struggling to get the saliva from the front of my mouth to the back of my mouth to swallow it. I also couldn’t spit so I needed some tools to help me clear my mouth. I also had a Nasal Gastric tube (NG tube) but I only had to use it for a few days while the swelling went down. I was only in the hospital for 4 days. On the fourth day I was able to drink Ensure but I was still struggling to swallow food. My swallow study showed that I was safe to swallow food but I was still having trouble clearing my mouth. 

That hole by my hair is where my drainage tube was connected. This picture was taken right after they pulled it out. You can also see my neck dissection bandages here.

These pictures show what I looked like after coming home from the hospital. Without the drainage tube I was very swollen so I had to ice my face to get it to go down. The bandages came off of my neck to reveal the incision. I am still very impressed with how minimally noticeable this scar is.

I am so fortunate that I had an amazing support system to help me with my recovery. I work as an SLP in a school system and the kids and staff created beautiful signs and cards for me. My husband is an artist and he designed a t-shirt to sell to help raise money for my medical expenses. I love cats and this shirt features one of our cats that was by my side throughout my entire recovery, Mickey. He has a “goofy” ear that lays down. We couldn’t think of a better mascot for the shirt than old Mickey the cat. My parents and my husband took shifts sitting with me and helping me, for which I am so grateful.  

Here is what my tongue looked like after the swelling went down almost a month post op. That purple string is stitches and it felt like hair in my mouth and drove me crazy. They eventually dissolved and came out on their own. 

Here is a picture of my tongue today, 3 years post op. As I mentioned before, They removed 50% of my tongue and sewed the tip of my tongue to the back, right side of my mouth.

Here is what my neck looks like today. The scar is barely noticeable.

Over the course of my treatment I lost 65 pounds in 4 months. I refer to this as the worst diet ever. Basically, I starved because it was too painful and difficult to eat and when I could eat, I often threw up because of the treatment drugs. I have since then gained back 10 pounds and I am maintaining a healthy weight, which is important after treatment. Sometimes people make insensitive remarks about it being a positive thing that I lost weight. I do not feel that way. It was very traumatic. Please don’t automatically associate weight loss with good health. They way that I lost weight was dangerous and unhealthy.  

Here is a picture of my mother and I about a week before my diagnosis.

And here I am a year and a half later marrying my husband who stood by my side throughout my treatment.