Strangely Beautiful

October 20, 2013

A few years ago I would have thought my greatest achievement would be surviving cancer. Now I see that yet another battle loomed just as treatment ended. I read an article recently that cancer for teens is the “ultimate identify theft.” That was very true for me. My story? The following is a mix of excerpts taken from a diary of sorts I’ve kept about my cancer experience as a teen – from essays I’ve written, thoughts I’ve had and insights gained during my high school years. This will basically be me at varying levels of maturity 🙂 I’m 17 now and see a much broader picture of my experience, and feel my cancer story has come full circle in many ways. I’m finally more of who I remember myself to be BEFORE cancer… yet better! And surprisingly, I’m grateful for the journey. My hope is that someone else going through what I did during the tumultuous teen years might be encouraged and inspired into turning something as negative as cancer into something positive. When a door closes, another is waiting to open…
Strangely Beautiful
Thirteen, I am a teenager just a year shy of entering high school. Not thinking anything could happen to me, until it does. Cancer. I was diagnosed on New Year’s Eve 2008. Up until then, I was busy preparing for all the things I wanted to do in high school. But all those things were put on hold when the Doctor came in and said three little words that would change my life forever, “You have cancer.” I always knew what cancer was but never really put any real thought to it. When the doctor told me about my diagnosis, the main thing on my mind was “Does this mean I am going to lose my hair?” Being a teenage girl is hard enough, but being a BALD teenager was unheard of. I had a blank look on my face I’m sure. I decided I couldn’t take in anymore so I tuned the doctor’s words out and began to worry about something simpler like “What was I going to do for New Year’s Eve?!” In the back of my mind though, thoughts lingered… I honestly didn’t know what was going to happen to me.
I was diagnosed with Ewing’s Sarcoma, a rare bone cancer. Within 10 days, I found myself waking up at the crack of dawn and heading to Seattle Children’s. I had no idea this hospital existed until it became my second home. I remember walking into the OR where I had learned they were going to put me to sleep to put in a Hickman line (central line) and do a bone marrow tap. Everyone was so cheerful, cracking jokes, acting like nothing was wrong. This relaxed me. The last thing I remember was a nurse putting some weird mask over my face, telling me to breathe in “laughing gas” that didn’t make me laugh at all. Almost magically, I found myself in what seemed to be just moments later in a different wing of the hospital with some other girl named Ashley. I don’t remember her much because she was so sick on her side of the room.
Going into my first inpatient treatment the day after my surgery, I had no idea what to expect. I have to say that being thirteen and not yet touched by anyone’s personal cancer experience, I was a very naïve. My mom I’m sure didn’t want to scare me by sharing worst case scenarios either…
I mean, “Who knows how each individual will respond to treatment?” I remember the nurse explaining what my first “medicine” was going to be and it had some long strange name that to this day I still cannot pronounce, so I just sat there nodding my head acting like I knew what was going on and interested in what she saying. All I really knew was that it was red and it would make me sick… but also save my life. Despite it all, I was weirdly excited to get going. I had new pajamas and fun things to do while I was in the hospital. My friends were going to visit… I was missing school! I remember telling my mom the night before as I was packing my stuff, “This is cool, kinda like going on a vacation!” But little did I know.
About 10 days into treatment, I went through the hair loss thing. I was lucky that my mom’s friend Denise had experience helping other cancer patients through this difficult process. She helped me transition over several days with minor cuts and came late at night when I finally just had to have it all off. We laughed and cried through it all, my older sister Anna there too bolstering my spirits. In the days following after losing my hair, it became hard for me to feel “normal.” I remember one afternoon my mom and I were watching So You Think You Can Dance? She could tell something was amiss and asked “What’s wrong Annika?” But she knew the answer. I hated myself, I hated the way cancer was making me look, I hated feeling sick and most of all, I hated my friends for feeling uncomfortable around me. I didn’t want to be treated differently; I just wanted to be “normal.”
My life those nine months of treatment did have some perks. I would hear people throwing around the phrase “cancer card.” Well, this is a great thing. Yeah, I know I said I didn’t want people to feel bad for me… but one day I decided if I could get something out of that card once in awhile, I would totally make people feel bad for me! I first tried it out at a group event for Young Life. We were having an Easter egg hunt all over the neighborhood. If you collected the BIG eggs, you could win a gift card. I was on a mission to find those big eggs because of course I wanted a gift card. The time came when we traded in our eggs for cards and I ended up with Krispy Kreme and Subway. OK… I was not happy. What could be more boring! I wanted iTunes! I wanted Target! This was a bit selfish of me (a lot selfish of me) but I told myself, “No! You deserve iTunes! You are going through so much!” I walked up to the boy that won the iTunes gift card and said “So I can’t eat at Subway and Krispy Kreme because of the bacteria in the food there. It will make me sick because I have cancer.” That wasn’t all true, but close enough. He said he didn’t believe I had cancer. This was extremely mean of me but I lifted up my wig and showed him that I had no hair. Walla! He handed over the gift card. I could tell he was so embarrassed, but I was like YEAH! The cancer card works! I will admit I used the “card” a few more times but didn’t take advantage of it, because all I really wanted to be was “normal.”
I was in treatment from January to September 2009. Being so young and going through something so troublesome at an age where your peers are immature is really challenging. When I finished treatment at Seattle Children’s, I began my high school experience a week or so into my freshman year. My friends had been telling me how much fun school was! Little did I know that first semester of 9th grade was going to be the hardest time of my high school experience. I walked into school that first day back with my best friend. We said our goodbyes and went off to our morning classes. After that, I never really saw her again. Yes, we would occasionally glance at one another in the hallways at school, but I knew we would never be the “sisters” we once were. I soon realized my friends from middle school were now strangers who I had memories with in the past. They had moved on. Although I had been given the “two thumbs up” that my cancer was in remission (and don’t get me wrong, I truly was grateful) the expectation I had that my life would pick up where it left off 9 months earlier slowly dissolved.
Cancer for teens is indeed the “ultimate identity theft.” Aside from friendships forever changed, I found the activities I once loved and helped define who I was were no longer there. Even the school I attended was different, with the teachers and office staff I cared so much about left behind. Before cancer, I was used to having a ton of friends and being really busy! Things such as soccer and leadership had been passions of mine. However due to the surgery I had during my treatment for cancer, I couldn’t play soccer for an unsure amount of time and even then my future abilities on the field were uncertain. And because I missed the last 5 1/2 months of 8th grade other than occasional visits to the school, I had not been able to run for a freshman class leadership position. I felt like I only had a memory of who I used to be. I was a teenage girl with no hair, few friends and literally in the hospital one day and sitting in class the next. Things looked bleak. So many doors had slammed unexpectedly in my face.
I took a light schedule of classes my freshman year to help transition back to a “normal.” One of the two electives I choose was choir, something I had never taken before. After a few months, thinking that I was ready for some extra-curricular activities, I decided to take voice lessons. I also tried out for the freshman school musical in the spring. These were things I never saw myself doing before cancer. That year I learned that I had a talent for singing and it brought me joy. As I moved on into my sophomore and junior years, I continued to audition for vocal groups and the school musicals, even finding myself as part of a duet that won State! My senior year, I was thrilled to learn that I not only received my first role in a high school musical, I was given the lead role – Maria in the Sound of Music. Being cast as the lead role in your high school play as a senior is an achievement to be proud of; however for me, it was more than that. Playing Maria represented so many things, a sort of reinvention of myself after cancer; finding a new “normal” and ultimately turning something negative into something positive.
I plan to major in Theatre Arts and Communications at college in the fall, and am so thankful to have even received several Visual and Performing Arts scholarships. It’s amazing to think I would have not found this glorious path had it not been for cancer. I am so excited about my future! This is just one of many doors that opened for me after others had closed. Sometimes God has a plan for our lives we don’t understand at the time. I am incredibly grateful for the direction my life has taken, the true friendships I have and knowing what is important in life. While cancer is never to be taken lightly as far too many are not as lucky as I am to be a survivor, as I grew as a person in this journey and discovered a new normal, cancer turned into something strangely beautiful.
“We must be willing to let go of the life we have planned, so as to have the life that is waiting for us” – Joseph Campbell
Annika Dybevik