Chordoma Foundation

Carlie’s Uncommon Story: Finding joy in the small things

I was diagnosed with chordoma in April 2017 while I was still finishing up college. I was preparing to graduate in May, but because of a bad sinus infection I was struggling to turn my head. I was having awful migraines. I went to the minute clinic at the local pharmacy, the health center at my college, and the athletic training office (I played field hockey). I ended up passing out and was brought to the hospital. The treatments I underwent at the Hospital of the University of Pennsylvania include: 

  • May 2017: Tonsils removed (in order for them to go through my nose without obstructions).
  • July 2017: First chordoma resections surgery through my nose.
  • October 2018 through January 2019: 45 days of proton radiation.
  • November 2019: Reconstruction of my sinuses.

Then, at the University of Pittsburgh Medical Center:

David, uncommon chordoma story
  • February 2021: Second chordoma resections surgery through my nose. There was a skin graft taken from my leg.
  • March 2021: Third chordoma resection surgery through my nose. This surgery was needed because I had pneumonia, three forms of bacterial meningitis and a spinal fluid leak. The skin graft from the February surgery was compromised and needed to be replaced with another from my other leg. Following this I was put under again to have a feeding tube and picc line (March 10, 2021) placed due to my weight loss and the antibiotics I needed from all of the infection.
  • March 2021: Surgery to place rod & screws in my neck due to my head collapsing on my spine.
  • April 2021: Picc line was removed.

No journey is ever a straight path. Currently, I go back and forth: Some of the time I am in total disbelief of the trauma I have endured while other times I like to think I am a basic 26 year old! I am still gaining weight and beginning to do things I used to enjoy, like working out or hanging with friends.

Something that is a constant struggle for me is the mental health side of chordoma. So, mentally I have been doing my best to do what is best for me after my rough spring season. Sometimes I enjoy doing things alone like bringing my dog to the park while listening to music but other times I find myself scheduling dinners and drinks. Having the support of a therapist and psychiatrist has been a huge resource to me during my chordoma diagnosis. Prior to chordoma I did not seek therapy or any type of mental health help, but I wish I had! Therapy has helped me to implement coping mechanisms for things as small as my anxiety when receiving a needle, to as big as scan anxiety. It has taught me techniques on days I don’t want to get out of my bed, or do not feel like I can speak to anyone. It has also helped me to find a new normal that has felt right for me.

My family and close friends have also been helpful during my chordoma diagnosis. Without their support, love, and encouragement it would have been really hard to get to the other side. They are able to lift me up when I don’t feel I can lift myself.

If I were to provide advice to someone who is newly diagnosed, it’d be to find some relief in small wins. Every single day may be hard, but finding joy in small things can be extremely helpful in getting through it — even if it sounds a little silly. Some examples could be: having your favorite nurse, getting a milkshake, FaceTiming a friend, or even your favorite movie being on. There is so much power in accepting where you are at and moving forward from there. There have been two major times in both of my first and second regrowth diagnoses where I saw no light at the end; I couldn’t imagine how I would ever get out of the situation but as I continued to accept where I was at and appreciate my small wins I was able to make it to the other side.

Another resource that has been helpful to me is Chordoma Connections, a great place to get information and the opinion of other patients or caregivers. I also think the Foundation’s recent Instagram page is an amazing idea. I have found fellow young adult patients through the power of a hashtag on social media, which has helped me so much. Finding individuals whom you can relate to when dealing with something so rare is beyond helpful. To other patients: do not be afraid to reach out if you find someone on social media! It can be the difference in feeling alone to be feeling heard.

 

We invite you to share your own Uncommon Story in your own words, which can help others in our community feel more connected and prepared to take on whatever may lie ahead. If you need help navigating chordoma, check out our free Patient Navigation Service.



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