Note: “Being Secure & Sure of Oneself is a Beautiful Thing” originally appeared in Ostomy Canada Magazine in the Winter 2015 Issue on pages 52-53, 56.  It is used under permission from  Ostomy Canada Magazine which is the official magazine of Ostomy Canada. 

Being Secure & Sure of Oneself is a Beautiful Thing

 

By Erin Kavanagh

I remember being around ten years old when I started to realize something separated me from my peers. As I started to grow older and more aware that my everyday routine differed from everyone else’s, I began to feel isolated. Ten-year-old me didn’t know anyone else my age who always had to have a catheter with them, or a bag attached to their abdomen. Then, on the first day of Ostomy Canada Society Youth Camp located just outside of Bragg Creek, AB at Camp Horizon Easter Seals, I met dozens of kids with experiences and ostomy bags just like mine. Suddenly the part of me that I had always worried made me different, ended up uniting me with people who were more accepting of me than I was of myself. Apart, we felt like misfits, but together we were reminded that we were not alone in our struggles.

My medical journey started when my mother was six and a half months pregnant with me. Her pregnancy was going completely as planned, and she was due to have me on Valentine’s Day. She wasn’t due for another ultrasound for nearly a month, but called up a family friend who happened to be an ob-gyn and sonographer after getting the feeling that something wasn’t right.

“I thought something was wrong because I was just larger than I had been with my first pregnancy at the same gestational period. So I went to my physician and they did blood-work and there was no indication that anything was wrong. But several weeks later I still had this feeling that something just wasn’t right, and it felt like I was carrying twins.” To put it simply, if my mother hadn’t gone in when she did, I wouldn’t be here today.

Shortly into the ultrasound it became clear that there was a large mass protruding from my back. My mother was told to go to Johns Hopkins Hospital in Baltimore, Maryland where they diagnosed me with a Sacrococcygeal Teratoma, a rare type of tumor that forms at the base of the spinal cord. Less than a month later the tumor had grown so large it triggered my mother to go into pre-term labor. I was born nearly two months early, weighing seven pounds. I weighed three pounds while the tumor weighed four.

At the time, only two hospitals in the country were willing to do my surgery, Johns Hopkins being one of them. From the very start, some of the best doctors in the U.S. were on my case, and they had never seen a tumor as large as mine. The internal part of my tumor had become highly vascularized: it had spread throughout my sacral plexus and up nearly half my spinal cord and the pressure it was exerting had dislocated one of my hips. After a biopsy, the tumor was classified as malignant, making it even more imperative that every bit of the tumor be removed.

My ostomy was first meant as a bowel diversion while doctors attempted to remove the tumor from my pelvis and spinal cord. In two operations that lasted nearly 20 hours total, surgeons successfully removed the four-pound tumor. My heart stopped twice from loss of blood but I survived thanks to the amazing team of doctors on my case. Unfortunately, the tumor was so invasive, the surgeons were forced to remove large amounts of nerves and muscles in my lower back, leaving me with nerve damage in my colon bladder, and legs. Due to the lack of muscles and nerve control over my colon, I now have a permanent colostomy. Since my bladder was also damaged, I had a procedure when I was seven called a mitrofanoff. Doctors made a channel out of my appendix from my bladder to my belly button and sealed off my urethra so I could catheterize this channel and have full control over my bladder.

Even though I had survived the initial surgery, my journey was far from over. There was still a very high chance that my tumor would grow back, and if it did, doctors believed the cancer would probably return as well. While my type of tumor is rare, it’s even rarer for the tumor to be malignant and thus the cancer is highly aggressive. My parents were told that if the cancer did come back, my chances of surviving past age three were very slim. Preventative chemotherapy was considered, but since I was so young it would have had detrimental effects on my already impaired development.  When I was one and a half, a MRI scan showed the original tumor had grown back, but luckily it was a benign section. The re-growth was successfully removed and I have been tumor-free since.

Doctors initially told my parents that they expected me to have many cognitive and motor defects. They didn’t know what effects the operations and medications had had on my brain function, and didn’t expect me to walk or talk. Although many of my milestones were delayed, I eventually walked and talked with the great help and encouragement of my parents, physicians and therapists. I’ve had over ten operations on my hip, knee, and both feet and now I am able to walk not only on my own, but without the need of crutches or leg braces. Although I do have to conserve my energy, the ability to walk at all, far surpassed any expectations my surgeons had for me. If there is one thing my stubbornness has taught me, it’s that most limitations are self-imposed, and are not necessarily reality.

My parents made it clear they believed I could achieve anything I set my mind to, and this is a mindset I maintain. My cognitive skills were by no means affected by the tumor: I have been on the honor roll every year of middle and high school and have taken as many advanced placement courses as I could throughout my high school career. I am in the top 5% of my graduating class and am attending Carnegie Mellon University. I plan on taking a pre-med track.

In my free time, I participate in a variety of activities, some of my favorites being a number of science and art clubs, being President of my high school orchestra, in which I play violin, and I also play piano. I just finished learning the second movement of Mozart’s 21st Piano Concerto. While I am plenty busy during school, I also make sure to keep my summers just as busy. For the past eight years, I’ve attended Ostomy Canada Society’s Youth camp. I’ve also attended the United Ostomy Associations of America Youth Rally. Both are programs specially designed for people with bowel or bladder diversions, and both have forever changed me.

It was at Camp Horizon where I first met someone my age with an ostomy. With the guidance of my older friends and the counselors, I’ve learned to develop the leadership skills I didn’t know I had. I had always thought of myself as an observer; that I would be the person behind the scenes and never the one leading the charge.  But camp allowed my independence to blossom, something that might be considered difficult for someone who has to perform daily bladder irrigation and take medications in order to stay healthy. I take pride in knowing that now younger campers look to me as a mentor: someone they can trust and see has real acceptance of both herself and others.

One of my best memories of camp is the climbing wall. My first year there, our team was scheduled to go rock climbing the first day At that point I still had bulky leg braces up to my knees on both feet, and although I had tried rock climbing walls back home, I had never reached the top. When it was my turn, I remember being determined to go all the way up. But about halfway up the wall, my strength was ebbing and my legs couldn’t find any rocks to rest on. Then from the bottom of the wall, I heard a chorus of shouts and words of encouragement.  My teammates kept saying, “Go Erin! You can make it!” The instructor started coaching me as to the best place rocks to put my feet on. Suddenly I remembered the goal I had in the first place, and their kind words made me realize that I could keep going, I just had to push myself. Needless to say, the sound of the bell ringing at the top of the wall was met with triumphant yells and clapping from the people watching me down below.

Camp has been a critical building block, not only for my independence, but my confidence as well. Not only that, but the connections and network I’ve built with both camps and Ostomy Canada Society have helped me countless times. I honestly didn’t know there was a stigma around ostomies until I came to camp. Up until then, my world had been carefully sheltered, and everyone who did know about my ostomy had never treated me differently. I now realize my classmates at school could have easily isolated me, but instead they chose to see past my differences. In pre-school, I had a major operation to place my dislocated hip back in its socket, which required breaking and resetting my femur. I had to wear a full-body cast for almost six months, but when I came back to class the first thing my classmates noticed was the cast’s color: purple. They wrote their names all over it and even threw a party for me when I got it off.

When I heard stories from my fellow campers about other people being not as accepting, I didn’t fully understand them.  Then when I had some encounters in middle and high school, I realized there were people who were isolating me because of my medical problems. Luckily those people were few and far between. Still, it made me worried that people who I wanted to ‘like’ me might see my medical conditions as a reason not to.  I remember bringing up the question with my friends at camp.  The advice they gave me has stuck with me all these years, and that is that you should never be ashamed of obstacles you’ve overcome, and those who cannot see past your differences are not worth your friendship. Surrounding yourself with people who are accepting of you is the only thing to do.  If you are ever afraid to tell someone about a thing you might be insecure about, whether it be an ostomy or a scar, remember confidence is key.  Being secure and sure of oneself is a beautiful thing.

I remember a social worker asking me during a stay in the hospital if I had the choice to be born without my tumor, would I take it.  I had thought about this question before, and I replied with the answer I always came up with: no.  Some people might not understand my choice, but I still stick to my answer. I am proud of the person I am today, and I know I wouldn’t be nearly as appreciative of the small things in life if I had been able to avoid these experiences.  Along my journey, I was introduced to a wonderful group of people at a young age who taught me the importance of keeping an open mind. I learned the value of a community and appreciating uniqueness in a person.  Sure, I’ve dealt with pain and personal doubt, but I also realize those doubts are experienced by everyone at some point.  They are what make us human.

I think that life is a miracle, and I couldn’t be more thankful to experience its ups and downs. Every obstacle has given me a greater appreciation for what I have rather than what I don’t. Not everyone would see having 18 surgeries, wearing casts and a back brace, and having limited nerve sensation as experiences they might embrace, but I do embrace them because I have no choice. These all have shaped me, but they do not define me. I am my own person, and while I might not have chosen this life, I can choose how to live it.

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Erin lives in Pittsburgh, Pennsylvania, USA

© 2016 Erin Kavanagh, Ostomy Canada & Courage to Shine™

E-mail Erin at Erin@courage-to-shine.org

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