Will I Need To Shave My Tongue?
I’m Jamie, a 38-years-old from Southern California. I am a mom to two little boys who test my sanity. I used to be a Disney Princess, but decided cancer would be way more fun! I was diagnosed with tongue cancer in March 2020 and had half of my tongue removed and replaced with parts of my leg. I had to re-learn how to talk. I had no risk factors for this rare cancer. I was over the top healthy, and still got sick. I share my story to help others who have to take on the same fate. I never want someone to feel alone. I got you.
I’ve always loved being extra. Wearing an over-the-top outfit to a “casual” function, being way too happy at the DMV, planning full on themed outfits for the holidays. You get the picture. I’m over the top. So of course getting my cancer diagnosis during a pandemic unlocked a whole new level of extra for me.
I had no idea they just call you and say, “Hello. You have cancer. It’s rare and aggressive, so we need to get a move on, but it’s Covid so we don’t know what’s gonna happen. So you will have to hurry up and wait.”
Tongue cancer is weird. They cut half my tongue out and replaced it with a skin graft from my leg. I thought to myself, “Will I need to shave my tongue?”
The answer to that question was no. Radiation will burn that hair right off! After recovering from surgery, I had to learn how to speak again. I sounded like a blob. I couldn’t manipulate my tongue to work with my brain to make words. I panicked being alone in the hospital and not being able to talk. “How are they gonna know when I have to pee?” I put my Pictionary skills into play and was exhausted after each nurse interaction. After a week, I won Pictionary and was able to head home to heal a bit before I started my grueling rounds of head and neck radiation.
I was so nervous and scared. The crazy side effects that are rattled off to you before treatment turns into white noise. It came down to: ”I have to do this to prolong my life for my kids.” Risk my life to save my life. I sound like a low budget super hero.
Going into treatment, I laid on the machine, my mouth guards in and a mesh mask locks me in. Think MET Gala, Theme is: Microwave Chic. It’s hard to breathe so naturally they give me the classic line, “Just try to relax.”
Music starts to play and, oh my God, it’s Frank Sinatra’s “That’s life.” Are you kidding me?
This is just how life goes. It’s shitty sometimes kid, so get over it. The next session it was Spice Girls, “When 2 become 1.” That’s right, all sexiness went away and I imagined my cancer cells becoming one and done with the rays of radiation. This became a game I played every session. During my 15 minutes of getting zapped, I listened to song lyrics to find a lesson I was to learn that day.
Jimmy Buffet told me about “Margaritaville” and that that salty metal taste in my mouth just needs a shot of Tequila. Billy Joel told me “we didn’t start the fire,” but the burns on my neck proved otherwise. I welcomed this distraction. It was way better than spa music trying to fool me that this was a relaxing experience. “This is the worst facial I’ve ever had! Zero Stars! Would not recommend.”
Cancer sucks. We all know that, but when we find moments to laugh during the course of treatment, those moments are much more memorable than the pain.