Carol DeCoene was diagnosed with Stage IV Hodgkin’s Lymphoma at the age of 17 and has been in remission since 2010. In this blog post, she reflects on her journey as a childhood cancer patient and talks about her future as a survivor.
Written by Carol DeCoene
Goosebumps rippled through my body as the crowd looked back at me. It wasn’t because I was nervous. It was because the scene in front of me was emotionally overwhelming. There were so many kind and smiling faces, some familiar and some I had never seen before. The energy in the room was an eruption of love and support. I hadn’t planned what to say, but I felt at ease because my tribe surrounded me.
I was standing next to Cody; we made a powerful duo. We were both pediatric oncology patients at Columbia Irving University Medical Center. I hadn’t met him before that evening, but our friendship was instantaneous. We were both survivors. When Cody opened the evening by introducing me as the speaker at the Silver Lining Society Holiday Happy Hour 2019, I said:
“When I was 18 years old, I stood on stage in front of a stunning group of people just like you at the Silver Lining Society Winter Gala. I came to share my battle with Stage IV Hodgkin’s Lymphoma and how much Hope & Heroes made the fight easier for my family and me. I whipped off my wig proudly and said, ‘I am Bald, Bold, and Beautiful!’ It was the scariest thing I’ve ever done because I was a young girl standing in front of hundreds of people completely bald, utterly vulnerable. But no one turned away in horror. Instead, everyone stood in ovation and cheered.”
I went on to say, “A beautiful force I cannot describe enveloped me then and there, and I had to hold back tears to finish my speech. Without the immense support from this community, I wouldn’t have had that courage to do any of this. Now, exactly ten years later, I stand in front of another Silver Lining Society event. Some things are different; I’m a survivor now with a head full of hair. But the strength I have, and the amount of love and gratitude I feel for you all is still the same.”
Ten years. June 10, 2020, marked ten incredible years of being a proud cancer survivor! A survivor!
And yes, I’m really proud. I’m proud of our community and how strong we are. All of us – cancer patients, cancer survivors, family & friends, doctors, nurses, support teams, and organizations like Hope & Heroes – that work tirelessly to support Columbia’s pediatric oncology and hematology program.
When I was told that I had Stage IV Cancer, I was just 17 years old. I thought I was sentenced to being a “poor,” “sick,” “helpless,” “cancer patient.” I felt I was unjustly robbed of the most exciting and essential time to be a teenager and learn who I really was.
But that’s not how the story went. On the contrary, being stripped of my hair, health, and “normalcy” that I had relied on to feel OK rocketed me forward to become confident, comfortable, and appreciative of myself. Stripped, I found this furious desire to fight the battle, completely unmasked and entirely vulnerable. Hope & Heroes inspired me to share that strength with others and became the channel that connected me to other bald, bold, and beautiful rock stars.
I never saw cancer in my life before I was diagnosed. I was ignorant back then and, though it may sound weird, I am grateful to have been touched by this disease. It opened something inside me that allows me to connect compassionately to almost anyone. I meet relentless patients and fierce survivors. I meet devastated parents and want to spread hope. It is an honor to have a story that maybe, just maybe, can help someone else.
The coolest thing about our community is how resilient and adaptable we are. We were forced into it, but it made us different. We became stronger. Our lives have been turned upside down. But we’ve already been through that once and know exactly what to do now. Cancer showed me how to overcome any challenge that comes my way. I am grateful for that.
What I love most about getting involved in the survivor community is meeting people from all walks of life. Some have deep roots with cancer and feel open to talk to me when I open up to them. Others have never even crossed paths with cancer. They are important to me because I was one of them.
Cancer doesn’t stop after treatment. It’s a forever bond.
It’s a bond that I wouldn’t trade for the world. Why? Because it’s a bond, not bondage. I’m bound to an extended family that reminds me how precious and beautiful life is, and how powerful my battle scars are. They inspire me to live life fully when I hear their stories – like when a mother shared that her child was diagnosed with terminal cancer, but he did not let that stop him. He made music that still makes me cry when I listen to it. It’s so beautiful. It brought inspiration and spread joy to others. This all happened during his grueling battle with a terminal diagnosis. He’s my hero, and now one of our angels.
I’ve been a part of the Hope & Heroes community since 2009. Special things happen here, I see it.
I saw it at my very first time at the Annual Walk in 2010. I was still a cancer patient and felt incredibly sick from chemo that beautiful spring day. I walked anyway, and you couldn’t even tell how sick I felt (other than my ghostly pale skin) because I had a team of supporters behind me, giving me strength. They lifted my spirits, elevated me with joy, and got me to the finish line. Love heals us. Since then, our troops have grown exponentially. It’s a beautiful thing to witness.
I felt it at the Annual Dinner, where hundreds of people and company sponsors come to honor our heroes. Seeing donations pop up on the screen by the seconds, paired with beautiful messages of support as our stories were told, gave me those familiar and emotional goosebumps. Last year, the Annual Dinner received over $1.2 million for our pediatric oncology and hematology program. That’s $1.2 million trickles of love, and it only represents a small number of the support we really get.
Those are only a few examples.
We’re a vast community with access to a slew of fantastic resources, especially for young adult patients and survivors. Organizations like First Descents and Stupid Cancer now host virtual meetups, seminars, conferences, and more on topics like at-home guided meditation, fitness, cooking, and medical and psychology workshops. They even host simple hang-outs where we get together to show off our pets and talk about whatever is on our minds.
Our world has been forced into an uncomfortable new normal, but our community is ready and armed to fight this battle too. I hope we’ll all meet again in person soon; I know we will. But until then, our community has found so many remarkable ways to stay connected. It only elevates my gratitude.
To me, being a cancer survivor means having a meaningful life. The light our army shines is stronger than the dark force bringing us together. I think one day, our light will shine so bright that it will burn cancer down to the ground into a mere pile of weak ashes, never to be seen again.