For my 10 months of treatment, I was very self involved. From the day I started chemo until the day I finished radiation, I don't think I wanted to know anyone else's story. Cancer has a way of doing that. Each day was about how I felt, how long treatment would take, what food I thought I could handle, who wanted to come visit... the list goes on. I would not have wanted to hear about someone that had been through it and was ten years down the road and having a great life. I wanted to find a way to nap comfortably with a needle coming out of my chest.
However, on those first few days after my diagnosis, and those first few weeks after I finished treatment -- I think what I was really missing were role models. Until I was diagnosed I never even knew it was possible for children to get cancer. I wanted to know that I could not just survive this, but that I could live a long healthy life afterwards. I wanted to know that my hair would in fact grow back, I wanted to know that I would gain my weight and my strength back. That I would arrive to my first day of high school and nobody would look at me as the "cancer kid" anymore.
I was diagnosed at age 10 with stage IV Hodgkin Lymphoma and I think I have learned a whole lot in my 12+ years of survivorship. I go through phases -- month to month and year to year I change my reaction to this word -- this extremely general word -- cancer.
In the years following treatment I went through a series of phases -- ecstatic to have my hair growing back, getting to play basketball again, becoming "normal." After that I developed a strong sense of survivor's guilt. I came to understand that there were other children with this disease that did not live through it and I began to close up. I felt like if I talked about my fortunate story I was rubbing it in the face of a family that was not as lucky. The next phase was empowering, my parents began doing triathlons with a group called Team in Training and I began sharing my story at fundraisers to help raise money and develop cures for the next generation and improve conditions for those with the disease today.
These days my feelings change month to month -- sometimes I hear the C-word and I am angry, sometimes hopeful, sometimes sad, other times inspired. It is a big, big word that carries with it dozens of personal stories and emotions.
A few months into my treatment I was hospitalized for a few days. In the in-patient unit I roomed with a girl named Mary. She liked the Yankees, wore an eye-patch and our moms hung out a few times. When I was in treatment we didn't have cellphones, let alone blogs and social media. I didn't keep in touch with other patients, especially in my first year of recovery when I just wanted to "fit in" with my peers again. Over a decade later I saw Mary in a suit heading to the Capitol building in D.C. and I realized what I missed when I was a patient -- role models.
I wanted to know that if I survived I would be blessed with new life values that some people don't learn well into adulthood. I would understand the value of family and friends -- having a support system. Of doing things each day that make you happy, but always working towards a larger goal to help the world in some way. I would learn the power of someone's presence -- you don't need to bring anything or know what to say, sometimes you just need to be there. Cancer taught me a lot about love and loss, about support, about thoughtful gifts and kind words, about how delicate this life we build is. It may have taken me ten years to figure it all out, but I am sure glad I did.
As I talk to my fellow survivors I truly can't believe I spent so many years disconnected from this group of my peers with such an incredible shared experience. Through opening up about our stories I am learning so much about this long journey of survivorship we are all on.
We are all, to varying degrees, at greater risks for secondary cancers, some people have side effects you can't see like the inability to have children or extreme bouts of fatigue, others were left with visible scars, amputated legs, prosthetic eyes. Yet in every interview these survivors don't dwell on the things they can't do but are grateful for all they can. They are strong and inspiring people that do some extraordinary things. They are the role models I wish I could have read about 12 years ago but I am happy to share their stories for children and caregivers now.