As told to Shannon Shelton Miller
My status as a cancer survivor has shaped my life. When I was 3, I was playing in the backyard with my older sister, who noticed blood spreading across my clothes. She rushed me into the house and told my parents. They took my clothes off and saw a lump hanging from my body.
They took me to the hospital immediately. Later, they’d learn I had rhabdomyosarcoma, a very rare type of cancer that starts in the soft tissue and is most commonly diagnosed in children and teens. It’s a fast-growing cancer, and my parents were told I might not live past 3.
I’m fortunate the cancer never returned after my treatments, but because mine was in my bladder, my surgery included an ostomy, and I’ve worn ostomy bags ever since. One of the good things about my diagnosis was that I was so young that this way of life is all I’ve ever known.
Both my parents were Christians, which helped me build a strong faith in God that I still have today. I lived a blessed life because my parents always encouraged me and never treated me like a sick child. I wasn’t seen any differently than my siblings. My mom never dressed me differently because I had an ostomy bag. It was like a normal life, which helped tremendously.
As I became a teenager and young adult, however, I started wondering about my future. My body was changing and I was questioning different things about my life. Would my friends still accept me? Would I get married one day? Could I have dreams and aspirations? Would I be limited in what I can do?
The biggest question was, “Why did this happen to me?” Why did I have cancer? Why did I have to wear these bags? It was rough in elementary and middle school because I was trying to hide my secret. I wanted the kids to accept me, even though they had no idea what I was going through. Some days I was fine, some days I had questions and some days I was depressed. Some days I didn’t know what I felt, but most of all, I wanted that answer: Why me?
I didn’t get it until much later in life, but I had to figure it out for myself.
During my teenage years, my mom always told me I needed to share my story, but I never knew why. She knew the reason, but what she said went in one ear and out the other. I didn’t understand until I was an adult that my story could make a difference for somebody else.
My story was about the “after” — life after the treatments, after the surgery, chemotherapy and radiation. What happened “after” was what changed my life.
My story is my story. Nobody can tell it like me, but I’ve learned my story also belongs to others. My story belongs to that cancer survivor, that person going through treatments, that person getting ostomy surgery or that person going through the many different emotions I had already gone through. You never know who needs to hear your story and how it can change their life for the better.
I had finally found my why. What was I going to do with what made me different? I would share my journey to let people know we’re all different to make a difference for somebody else.
So this is my story. I’m an author, a motivational speaker, ostomy advocate, cancer survivor and fashion model. I own and operate a modeling company. I’m very involved in my church. I wear many hats.
When I look back and see that little 3-year-old girl in the backyard and I look at myself now at 56, I know I’ve lived a blessed life. I see how God has opened many doors because I’m a cancer survivor. A lot of people want to know “Who is this model who has two ostomy bags?” I was able to model in different publications, on billboards and on TV. I’m still amazed and sometimes I just ask, “Wow God, are you still showing me my why?”
It’s been several years since I started sharing my story with others, in person and on my website and social media. Becoming an advocate has given me the opportunity to go to ostomy conferences and speak to others like me. Last year, I spent two weeks in South Africa after an ostomy organization there saw my Instagram and read my story. They invited me to speak, which was such an awesome opportunity.
I know a lot of us aren’t talking about this, so I try to share my journey to say to them, “Hey, listen, you still can live a normal life.” Healthwise, I’m perfectly fine. I have a yearly checkup with my specialist to make sure everything is ok.
I also wrote a book, Pretty Girl Blues, and the title reflects how I felt about my life. I might look like a pretty girl on the outside, but I’ve had many times when I felt so blue on the inside. I talked about everything in that 96-page book — my work, home, my peers, my marriage, my divorce and my modeling career. This book started as a journal, and it was healing for me to get all of my thoughts off my chest.
It’s also healing for me to talk to other cancer survivors. I can talk to other people that have an ostomy. We can share so many deep things — and we understand each other. It’s like, “Oh my gosh, this happened to you too?” It’s inspiring when you can share your stories because you’re walking in each other’s shoes.
It makes such a difference knowing you’re not alone. It feels so good to hear from other people with the same experience, and that inspires me even more. It helps me keep going.
I know I’m different to make a difference. That’s my “why.”
This educational resource was created with support from Merck.
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Our Real Women, Real Stories are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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