Cancer Didn’t Kill Me, But It Did Ruin Dinner…
The Beginning
"Unfortunately it's squamous cell carcinoma...we'll need to get you over to IU Health to their oncology department ASAP...."
I had just opened my eyes from being put under for my biopsy. I immediately knew something was wrong because Mason and my mom were crying. After my doctor said the sentence above I just kind of tuned out. The last few months flashed in my brain. I went from being absolutely hopeless to absolutely pissed.
I live in Indianapolis, Indiana and had been dealing with Community Health Center for the past few months. In December 2024 I noticed I had a painful rash on my tongue, and then I started to lose mobility. I couldn't stick my tongue out anymore, and it would go crooked when I did. My right ear was also KILLING me, so I thought I may have a gnarly ear infection. I went to urgent care where they told me I had shingles. They prescribed meds and nothing changed, it actually got worse and more painful. I went back a week and a half later where the nurse looked at me for one minute and berated me for being a "drug seeker." I cried all the way home that day. I finally got into my PCP who referred me to an infectious disease specialist.
The infectious disease specialist immediately told me I had an STD in my mouth. "Hmmmmm I don't think so" I replied, knowing my relationship status with a partner I trusted. She screened me for every STD and, of course, they all came back negative. She decided it was a 'fungal infection" and gave me some meds. Guess what? Still no help.
Everything got SO PAINFUL that I visited the emergency room on February 4, 2025. The ER hooked me up to pain meds, let them drip, and sent me home. No screenings, no scans, nada. It was a total waste of time and money.
I finally got into an ENT a few weeks later (thank you, Dr. Hansen). She poked the tumor under my tongue and I immediately JUMPED out of the seat. Literally jumped- my body shot across the room. The searing pain in my head and ear was unbearable. She immediately brought me downstairs and fast tracked an MRI and CT scan. She biopsied me the next week and saved my life.
My tongue was so painful I could no longer eat. I was losing weight FAST. I went from 130 pounds to 100 like lightning. My skin was pale and my eyes were sinking in. I finally got in to Dr. Michael Moore at IU who had me on an operating table in two weeks after a PET scan. That day I call my "Frankenstein surgery" which was ten hours long and did the following:
-Docs cut my neck nearly all the way across to be able to remove my lymph nodes and to go up to remove my tongue and tumor. They ended up removing 70% of the right side of my tongue.
-They removed tissue from my back to reconstruct a new tongue for me.
-They put in a trach to help for breathing until swelling went down.
-A feeding tube was placed into my abdomen
-My right tonsil was removed for precaution
I spent the next week in the ICU in misery. Mason slept on a chair next to me every night. He brushed my matted hair and walked me to the bathroom every day. I couldn't speak, so we wrote each other notes. It was the worst week of my life. Every few hours doctors would come in and turn my trach down so I could be weaned off. They pulled tubes out of me with force that took my breath away. Constant IV's, shots, blood draws, scans. I don't think I slept more than two hours at a time. It was the most pain I have ever had to endure. I had nightmares that I was in hell and I couldn't speak or scream while demons tortured me. The only upside was I FINALLY got some nutrition through my feeding tube. Mason said with my first 'meal' the color returned to my face. It was like coming back to life.
After surgery we got the bad news that the cancer had spread to my lymph nodes, so I was officially stage four. This meant not just radiation, but also chemo for my treatment plan. I will dive deeper into that treatment in another entry. 33 rounds of radiation and six of chemo is what I was gearing up to endure. Thinking of that was so daunting as I had just had my entire body cut up, sutured, and held together with tape and bandages.
I am hoping this blog will help others in this situation know they are not alone. I also would love to dive deeper so my friends and family know what I have gone through. Each entry will focus on one area of recovery and updates of things as I continue along trying to deal with the "new normal" of life. I wanted to start this blog while in treatment, but I was in so much pain, so sick, and was attempting to work two jobs to keep us afloat (America!). I am glad I have more time and clarity to finally start this. I figured starting at the beginning was best. I hope you all will follow along.
XOXO,
Brittany
“You Are Not Cancer”
So, I had a BIG crash out on Tuesday….
Ever since I’ve had cancer, I’ve been playing life on hard mode. Not just physically, but emotionally and DEFINITELY financially. Trying to figure out how to keep us afloat without income has been proven very, very difficult. I finally got approved for disability, but it doesn’t kick in until the end of May (I have been unemployed since October) and it’s absolutely not enough to cover our bills. I also am waiting on an approval for unemployment. Indiana hates unemployed and disabled people, so it’s been chaotic, to say the least.
My husband, Mason, is the most amazing person I’ve ever met. We were married for two months (December 2024) before I got my cancer diagnosis, so we have not known peace our entire married life. I want SO BADLY to make his life better and easier, but I feel like I keep making it worse. We finally got a house after moving back to Indiana from San Diego, CA in June 2024. We were finally making some headway. I was like, YES awesome! Things are looking up! I was working two jobs to pay for upgrades to the house that were not found in our inspection (a $25,000 bathroom emergency re-do which I will talk about another time) but things were chugging along. Then BAM- cancer. Mason slept next to me in a chair for a week while I was in the ICU. He learned how to clean my trach. He brushed my matted hair. He walked me to the bathroom. He took me to every doctor’s appointment. He provided insurance for me. He rubbed my back while I puked chemo every day for months. To say he is a gem is a gross understatement. I swear to all of you I am convinced I didn’t die last year because it has not been enough time together to love him properly. Even when my body was at it’s worst, he told me I was beautiful everyday. He still does, even though most days when I look at myself, it’s a stranger looking back.
So, back to the crash out…
I went to my grandma’s apartment to help my Mom do some chores for her. She is dealing with arthritis and other ailments (she’s almost 86!) and I hadn’t seen her since before Christmas because she had COVID. I think my grief, stress, pain, finances just caught up to me. I bawled. I bawled HARD. I told Mom and Grandma how badly I felt because I made Mason’s life harder. He didn’t sign up for this. I can’t pay the mortgage anymore. I can’t do my job I went to school for. I am so terrified of losing our house (it is supposed to be our forever home) and I just cried those big, giant, desperate tears. Mom and Grandma cried too.
My dad passed away in 2012 and he is buried in a tiny little cemetery near my Mom and Grandma. I hadn’t been out there since I got sick, and I was visiting alone (sans Mason this time) so I drove myself out there. I bawled some more. I cried so hard I broke blood vessels in my face. I wailed “I wish you were here so you could help me!” into the wind. Another person rolled up to the cemetery and refused to get out of their car to give me time to lose my shit for awhile (thank you, stranger). I sat on the mound over my dad’s casket because it was the closest I could get to him. I just absolutely let it all go.
I got home to my warm house around 5:00 and Mason and our kitty, Opal, greeted me at the door. Of course Mason wanted to know how the day went. I told him everything. I cried again. He tucked me under my heated blanket on the couch, hugged me and said the magic words..
”You are not cancer.”
“What?” I asked. He responded, “YOU did not make my life harder. Cancer made OUR lives harder. YOU are not cancer. Please don’t ever think you have done anything but make me happy.”
…..what a fucking gem, amirite??? I told you.
I realized he is right. It was such a simple sentence. I always get so down on myself. We are all our own worst enemy. I didn’t ask for this. I fought cancer with literally everything I had. I am NED (No Evidence of Disease) right now - Hallelujah - and I really want to keep it that way. I am literally relearning how to live, how to speak, how to SWALLOW FOOD. I have made a lot of progress in less than a year. There is still a lot to go and a lot is permanent, but I am here. I woke up today. I live with and get to love a wonderful person. There’s a purring cat on my lap. My mom and grandma are here and let me cry all over them. Somewhere in the universe, my dad is saying “It’s going to be okay- get your ass up and keep going. You’re a strong bitch and I raised you to fight.”
All this to say, it’s ok to crash out sometimes. Support is EVERYTHING, especially when you have cancer. I have so many wonderful people around me. My friends are incredible and also stepped in so much to help us when everything was falling apart. I hope you all have someone (or, hopefully LOTS of someones) you can lean on, too.
Love you.
XOXO,
Brittany