“Hearing the words ‘you have cancer’ at just 14 years old was an unpleasant surprise to me. I was just a normal girl in high school. I had just finished my freshman year. The second the doctors told me they had found tumors in my abdomen upon reviewing my CT scan, I remember crying for my mother. I was terrified and definitely not prepared to hear this.
These feelings became stronger once I got an official diagnosis of Stage 4 Alveolar Rhabdomyosarcoma, an aggressive soft tissue cancer. The first question I asked my oncologist was, ‘Am I going to die?’ He paused, trying to think of the best way to answer my question, responding with, ‘I don’t know, but I could die by walking down the street and getting hit by a reckless driver. Don’t think about it like that.’ That oncologist’s words stuck with me. From that point on, I didn’t view my cancer as a death sentence.
Immediately after my diagnosis, I was admitted to a children’s hospital to do more testing and scanning. 5 days after I was admitted, I began chemotherapy. My first ever chemo cycle was one of the hardest things I’ve gone through to this day. I didn’t have the strength to walk, so my parents had to hold me up in order to use the bathroom. I was asleep for most of the day, and in the short period of my sleepless state, I would be throwing up. For 5 days I refused to eat anything, and I ended up losing seven pounds in a week. The day I got discharged from the hospital, I felt truly defeated by my cancer. I was weak, underweight, and lethargic after starving for days on end.
At the same time, I fell into a dark state of mind. It felt as if I lost any sort of independence I previously had. I was fully reliant on my parents to exist. During this time I kept any mental struggles to myself, I didn’t want to burden my parents with more tragedy. Most of the first month of my journey is blurred in my memory, I blocked a lot of it out in order to heal. Still to this day, it goes down as the hardest week of my life.
About 3 weeks after my first chemo, I woke up one morning to a few strands of hair on my pillow. My heart felt like it sunk into my stomach, and I began crying uncontrollably. Seeing my hair on that pillow shattered my heart. It was a reality check. This was it: I have cancer now. I am going to be bald. Throughout the next few days, pulling hair out of my head became a hobby of mine. I would constantly pull out strands and examine them, and as the days went on the balder I became.
Finally, about a week in, my head was itchy and ready to be shaved. Once the big shave came, I felt like a completely different person. Any time I was in public I would be subjected to staring and strange looks. This made me feel humiliated, and I wanted nothing more than to disappear. I turned to wigs, but they were too itchy. The only thing I felt comfortable wearing was a beanie, so I wore one all of the time.
At this point in my life, I was ridden with insecurity and never wanted to leave my house. My self-consciousness became worse when I began to lose eyelashes and eyebrows. Once those two disappeared, I felt so ugly. I tried my hardest to draw on my eyebrows to the best of my abilities, but I felt like an alien. No matter what I did, I hated myself and my appearance. It would take a whole year for me to feel content with my appearance.
Chemo became a normal thing for me. It sucked really bad, but it became a part of my routine. Every 3 weeks I would receive a big chemo called V.A.C (vincristine, azinomycin-D, cyclophosphamide), as well as receiving vincristine weekly. About three months into my chemotherapy, it was time to start the radiation portion of my treatment. I went into radiation thinking it would be easier than chemo, and for the first 2 weeks, it was.
But 2 weeks in, I began to notice the burns on my skin, and they were one of the most painful things in the world. I was prescribed opioids in order to tame my pain. The discomfort became so bad I was admitted to the hospital for pain management and had to be sedated for my last five rounds of radiation. The burns were on a whole new scale of pain, and I ended up being admitted to the hospital for a whole month.
Each day felt like 1,000 years. I missed out on the holidays because of my excruciating burns. No one ever prepared me for this, and it seemed no one fully knew how to get my issues under control. After about 3 months, my burns finally healed and I finally came off of pain medicine. At this point, I only had about 4 months of treatment left. Those four months flew by quickly, and before I knew it, July came. I was done with cancer! For now.
Transitioning back into normal life was especially difficult for me. Everyone looked at me like I was a different person. I felt isolated from my friends because they viewed me as being fragile, but I was the same person as before. Friends I viewed as being super close grew distant to me, and this shattered me. It seemed as if no matter what I did or who I associated with I was always viewed as the cancer girl.
These feelings stayed with me and I constantly felt self-conscious about my short hair. I hated how my body looked. I was rail thin after going through 10 months of hell, and it was still hard for me to eat. I felt like I was back to a normal life, but at the same time, I needed medication every day. I’d look into the mirror feeling like a somewhat average teenage girl but the scars on my body reminded me what I went through. At this point, I felt trapped in my past, and I still feel like that to this day.
In March 2018, just 10 months after finishing my chemo, I was due for a routine CT scan and MRI. After completing these scans, my doctors found a new tumor. My cancer had officially relapsed. This news completely crushed me. I was finally content with how my hair looked and was excelling in school. In the span of a few days, I was thrown back into the nightmare and forced to fight all over again.
I was put on a clinical trial in hopes of bettering my chances and as a less harsh alternative to chemo. Soon enough, my hair fell out again and it was just as hard as the first time. I felt so uncomfortable with my baldness I didn’t go a day without a beanie. I absolutely despised the trial. I was put on steroids that made me gain 15 pounds in 2 months. The weight gain made me even more insecure about my body. I hated the way I looked. Even worse, the steroids gave me acne breakouts all over my face.
During this time, I took very few pictures and stayed inside for most of my days. Mentally I wasn’t doing well. I watched myself change so quickly for the worse. I missed how I used to look. I would constantly look at old pictures of myself. The clinical trial on its own was bearable, but the physical effects of it took a toll on me. About five cycles in, I refused to take the steroids because I had enough of the acne and weight gain. Luckily my oncologists complied, and about 5 months later, I finished the trial.
Once I completed the trial, I moved on to the maintenance phase of my treatment. Maintenance is basically low dose chemo you receive after finishing intense chemo to lessen the chances of cancer returning. I ended up being on maintenance for a year altogether, starting in October 2018 and ending in November 2019. Just because the chemo is less intense doesn’t make it any easier. I ended up losing my hair for a third time on maintenance, which crushed my spirits.
What sucked even worse is I lost my hair a week before my prom, so I bought a wig. Maintenance made me feel so nauseated and I threw up more on this treatment than my clinical trial. I missed out on almost all of my senior year because I felt crappy all day. Cancer as a whole took up almost all of my high school years for me. I only experienced freshman year and part of my junior year. Because of my absence, I never got a high school diploma and couldn’t apply to colleges because of my lack of credits. I ended up having to wait until I turned 18 in order to start college. I felt lonely and no one I knew could relate to what I had gone through. While my friends were experiencing college, I was receiving my last few rounds of maintenance chemo.
Once I finally finished treatment in November 2019, I finally felt somewhat free and independent. Since then, I have gotten scans every 3 months to make sure the cancer stays away. I have been in remission for a year now, and at last, I feel the smallest bit of normalcy. For the longest time, I wasn’t able to work, but I got my first job a few months ago. I am also in college studying to be a nurse, so I can give back to the people who helped me.
Although I am not completely out of the woods cancer-wise, I feel like I am closer to being an average 19-year-old than ever before. I hope I never have to go through cancer again and when I enter my twenties, this chapter of my life will be finished. Even though I feel resentful because of the unfairness cancer brought to me, I am grateful for it because it opened my eyes to how amazing life is. I never take anything for granted anymore, and I am so happy I was part of the 15% that survived more than 5 years.”
This story was submitted to Love What Matters by Sophia Kaplanis from Los Angeles, CA. You can follow her journey on her Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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