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The Girl with Cancer in her... You’re Joking, Right?

By Elizabeth

Ever hear the one about a 15-year-old girl diagnosed with cancer in her butt?

Unbelievable, right? Cancer in your butt.

Elizabeth holding a sign that says "54 weeks of chemotherapy, 33 days of radiation."

It was a normal Friday for me. Sunny. I remember the sun. We drove to meet my oncologist after we waited a week for results. The building we met in was made of glass. That day it sparkled blue because of the bright blue sky reflected on to it.

Our actual meeting with the oncologist was really quite short. First, he had my mom step out of the room where I assume he told her what was going on. When he came back, he told me I had a tumor about the size of a baseball wrapped around my rectum.

I remember thinking, “You’re joking, right?” and waiting for him to say, “just kidding.” However, those words never came out.

That Sunday we dropped everything and moved to St. Jude. “Where and what is St. Jude?” is the question I was asking. When they said Memphis, I again asked the question, “Well, where is Memphis?”

When we left, we had told no one. We really didn’t even know what to say. None of my friends knew what was going on and when they asked me where I was, I just lied and said I'm out of town, and that I'd be back soon.

However, that was not the case — 52 weeks of intense chemotherapy began almost immediately when I got there. I believe it was on my 5th day of being there, the day before my 16th birthday, that they placed my ports and did all my scans.

Goodbye to normal

The snap of a finger is how long it took for my perfectly normal life to come crumbling down. It was one struggle after the other.

First, I'm told I have high risk stage 4 alveolar rhabdomyosarcoma. After that, I'm sent to Memphis not even having the chance to say goodbye to my old life. I just left.

Once in Memphis I began treatments right away. There was rarely ever a week where I didn’t receive some sort of poisonous cocktail.

Elizabeth standing on a bridge with her arms spread apart.

Hello to side effects

A few weeks into my treatment is when my hair began to fall out. That all on its own is a war story. Imagine being a 16-year-old girl and losing your hair. You can’t, right? No one could, it’s unimaginable.

Soon after is when my appetite dropped tremendously, I weighed in the low 70 pounds. That’s the time when an ileus developed in me. An ileus is where your bowel completely shuts down. They said it was one of the worst they had seen.

My stomach got so bloated it looked like I was 6 months pregnant. They put a reverse suction tube down my nose to replace the NG tube I already had for nutrients. The reverse suction was to get everything out of my stomach since my bowel was not working.

I could not eat anything for months so I was put on TPN, which delivered nutrients through my port’s central line straight into my veins. My ileus did resolve itself but took months to do so. That was months with no solid food and severe pain.

Eating was a big struggle for me because even after the ileus was resolved I still had chemo induced IBS (irritable bowel syndrome) that kept me from feeling hungry.

Radiation was next on the list of torture. It lasted 30 days, the first two weeks was proton radiation that was focused on both the front and back of my bottom. The rest of the days it was focused directly on my butt.

I was told there would be a little sunburn as a side effect of the radiation. That was not the case for me. Imagine your worst sunburn multiplied by 1,000. That is what my entire rear end looked like — a burnt peeling mess.

During that time, I only wore sweatpants and rode in a wheelchair to get anywhere. I did OK for a little while after healing slowly from that; I mean as well as you can do on chemo. Those OK times ended however when a rare rash developed on the soles of my feet and palms of my hands. It was like walking on boiling sharp lava; I had to wear my UGG®s daily, which didn’t help much.

I couldn’t put my hands below my chest. They had to be raised up all the time because the blood flow to my hands made it feel like the strongest man in the world was pulling them down and crushing them.

When we told the doctor about my rash, he had no idea what it was. I remember him leaving for a moment and coming back with freshly printed paper. He had to research what I had. It ended up being a rare side effect of one of the chemotherapies I was receiving.

After that ended, another rare side effect began; my fingernails began to shed off! I could lift up my fingernail and see a completely new nail growing under it. That happened all the time, my nails would peel off with a new nail already underneath. It didn’t stop until the end of treatment.

For the rest of my time there, I struggled with nausea and pain the most. I would get really bad mouth sores that prevented me from opening my mouth let alone eating. Finally, maintenance was all I had left to get through. (Editor’s note: Maintenance chemotherapy is given to help keep cancer from coming back after it has disappeared following the initial therapy.)

Yes or no to more therapy?

I was sent to St. Jude because I was told I needed its maintenance therapy, which isn’t offered in other hospitals.

However, my heart was the only thing keeping me from that. We had been watching it throughout the whole treatment. My heart couldn’t pump enough blood into my body, and it also couldn’t fill up enough with blood. I had an ejection fraction of 24%, which was quite low. The low end of normal is what they told me.

It’s November by this time. We were told that I had to make a decision on whether to proceed with maintenance. If we were to go ahead with it, my heart would have worsened. Since maintenance was the research part of my treatment there wasn’t enough evidence to tell whether it would work.

I had a choice of whether to risk my heart and go ahead with the treatment or to risk not receiving it and allowing my heart to heal. I chose to not continue with treatment. With that choice came the loss of maintenance all together because it had to be received within 3 weeks of the initial chemo.

Elizabeth holding up a sign, with a quote that says "I lived this story and I still do not believe it."

What’s next?

That decision ended my time at St. Jude. We packed up and moved home almost immediately where I began a new battle. The battle of being homeschooled and reconnecting with friends.

What is a war story? A war story is something so unbelievable that it’s hard for a person to believe it’s true. I lived this story, and I still do not believe it. While my story might not have been based in a war, I still fought my own battle against my body.

Cancer snuck up on me as it does everyone. It used guerilla warfare to attack me from within.

While my battle with cancer may be over, I will forever fight the loss of fertility, the loss of friends to cancer, and the question, “Will I relapse?”

Posted: August 2020