I was 15 when I was diagnosed with a clival chordoma and my only symptom … I snored. I then proceeded to get 2 major surgeries within a week of each other and get radiation treatment in a different country. At 15 years old, leaving all my friends for 2 and a half months for something I didn’t understand was devastating.
I got through it seeing the world a little darker and a little brighter. Enjoy the little things because the darkness in the world can be very dark. I smile a little bigger now to spread the good in the world because you never know who needs it. My dark days however are also a little darker because of it.
Two years later it came back in a lymph node in my shoulder. I then got another surgery to remove it. Four years later it’s back again.
We found out it was growing again because the radiation from the first round had deteriorated my spine so much it broke. I was bedridden for about 6 weeks in so much pain that I couldn’t stand long enough to go to the bathroom. I then met my surgeons on a Wednesday and was in for surgery on the Friday where they fused my C4 to my skull and took a piece of hip to do it.
They told me they couldn’t stop the tumor anymore because I had gotten my max dose of radiation for my lifetime. I sent it away for testing to see if there were any other options for me. To everyone’s surprise they found things. I now have a few options. However, while I was waiting for the results I pursued other non-traditional medical treatments.
My 2 month follow up CT showed no growth since starting these non-traditional treatments. Now I’m not sure what to make of it. I do my best to hold onto the good moments and live my life to the fullest. When I first started this journey, I thought I could do the surgery and radiation and be done. I realized when it came back the first time that it would be a lifetime of monitoring and got very depressed for a long time. I still struggle with it. This is a lifetime diagnosis for me. I am still working on living with it and hoping to help some people along the way. I would have loved to have known I wasn’t alone in this diagnosis and through all the hard things I had to go through. My family is great and always there when I need them, however, it would have been nice to know someone was going through something similar. At the time, the chordoma community wasn’t large especially for a 15 year old. So, for anyone reading this. You are not alone.
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.