I am a childhood leukemia survivor, having been diagnosed at the age of 11. I’ve thankfully been cancer-free since 2007 but I currently suffer from a number of late effects from my treatment, ranging from physical to neurological issues. For me, the biggest struggle after my experience is dealing with physical changes, mainly avascular necrosis (AVN).
At the age of 14, I had my first hip replacement, just a month after finishing chemotherapy. I was confined to a wheelchair for almost a year after a dislocation and subsequent infection, which significantly impeded my healing time and ability to walk.
Despite all the trouble and months spent in the hospital, I had one person in my life to join me on this journey. My mother stayed by my side 24/7. She was my best friend and supporter, and took care of me all the way up until her untimely death two years ago. Honestly, dealing with her death was far more painful and devastating to me than any of my experiences during treatment. Even during my diagnosis, I was emotionless. I did not cry or show fear; I just needed time to process the situation. But when I lost my mom, I felt that I lost my other half. She was the only one who experienced it all and knew me the most.
But I’ve learned over the past two decades that we must continue to move forward. I’ve struggled dealing with cancer and being alone, even years after I finished treatment, but somehow I still made it today, and that is something I am forever grateful for. I’m still smiling and managing to put my best foot forward, refusing to let cancer dominate me. I know my mother would have been so proud of me, of the man that I have become today.
If anything, cancer intensified the bond between my mother and I. To put things into perspective, my biggest lesson learned is to never take life for granted. Something like leukemia made me realize that life is very precious and we should enjoy every moment of it. One will never know what tomorrow will bring and my experience exemplified that.
During all these years, I have also struggled finding a community where I belong. Living in a place like NYC can be very lonely, given the hustle and bustle of the city. Finding a community in NYC was akin to finding a needle in the haystack. I had to think about what type of community would make the most impact towards me.
Cancer definitely held a defining moment in my life, and a moment that I still can not let go. I thought about seeking groups dealing with cancer. I finally felt that it was time for me to take an initiative, and it all started from the Stupid Cancer 15th birthday party last fall. I had an amazing time meeting some folks at the event, and wanted to find ways to get involved. After hearing about CancerCon, I initially felt hesitant to attend, but overcame my fears and decided to attend.
Surely, I made the right decision – a decision that I am grateful to have made. During my four days at the convention, I met so many amazing people: survivors, patients, and caregivers who were some of the strongest and brilliant folks I’ve met. Hearing their stories really changed my perspective of things. For once, I was in the same room hearing the word “avascular necrosis” with folks who actually “get it,” and that feeling was momentous and refreshing to me. It felt like a spark of new energy came rushing towards me; a feeling I have not experienced for a long time.
I am grateful for Stupid Cancer and their support for AYA patients and survivors like myself. Keep doing what you are doing. Thank you for reminding us that we are not alone in this fight. We are in it together!
By: Victor Bhattacharya