Q. Can you describe how you were diagnosed with chordoma, what treatment(s) you received, and the general timeline of your journey with chordoma?
R. I started having double vision and after searching for a long time as to what caused this, I was diagnosed with clival chordoma in 2019. The prognosis didn't look good. I continued to work full-time and had a great group of friends who were always there for me. I had to be strong for my son who was in first grade and needed me. So there was no such thing as giving up.
Q. How are you doing now?
R. I am doing very well. A few centimeters of tumor are still present and after surgery, I had radiation treatment in 2019. Ever since then, I have quarterly MRI check ups and these look stable.
Q. Who or what has helped you the most on your chordoma journey? What things made your experience a little easier? Were there any resources or support that you would have liked to have more of?
R. My partner made it all possible, and my friends were very supportive, so I was able to focus on the surgery and the rest of it.
Q. What are some of the most important things you learned during your experience with chordoma that might be helpful to other patients? What advice would you give to someone newly diagnosed with chordoma?
R. Never, ever Google it. Googling a disease is always a bad thing, but when you have a tumor that is so rare, it is even worse. I did a lot of reading, but never anything positive :) and according to the internet, I don't think I should be alive anymore.
Q. What role has the Chordoma Foundation played in your story?
R. The online Zoom-Cafe meetings are very interesting and helpful.