I was extremely lucky when I was diagnosed with a clival chordoma! Unfortunately, I suffer from degenerative disc disease. I had been having a lot of neck pain, and my doctor sent me for an MRI. The radiologist wrote that he saw something in the films that he thought was a clival chordoma. A what?! Who ever heard of that? The neurosurgeon who’d sent me for the MRI told my wife and I to forget about it: “It’s nothing!” We didn’t like that answer!
My wife (Sally) works in healthcare, and she and one of her employees immediately began to do some research, and it was her employee that researched specialists in the field and found Dr. Sen at NYU Langone in NYC. We called, sent the MRI findings, and Dr. Sen saw us within 24 hours. Dr. Sen confirmed that it was indeed a clival chordoma, but that it was extremely small. He also said that these tumors were slow growing. He offered us the opportunity to seek out a second opinion, but we knew we were in the right place.
Dr. Sen is such a soft-spoken, caring, and humble man, and he made us feel so comfortable that we agreed on the surgery the next day. About six weeks later I had the procedure done. It was such a clean surgery that Dr. Sen said that I didn’t require any further treatment, and now it is 4+ years later and all is well!
(As a side note, Sally called the hospital where I had the MRI done to speak to the radiologist. She thanked him for saving her husband’s life. No one knew what a chordoma was; how did he know? He was totally silent and in disbelief that someone would call him to thank him!)
In addition to amazing support from Dr. Sen and his team at NYU, the support I received from Sally and my children was incredible. It was difficult to tell my children that I had a “brain tumor.” They were very upset and nervous, but after they let it sink in a bit, they were strong for me.
Getting diagnosed with a rare disease is a very frightening experience. When Dr. Sen told us that I had a malignant tumor growing in my skull and explained what is was, my stomach flipped over. It’s difficult to describe the feeling: “Oh my God, was I going to survive?” A million things swept through my mind in an instant. I broke out in a cold sweat and was totally consumed with fear. Sally felt the same things, but was able to not let me see her fear and kept it together for me! By the time surgery was nearing, I began to lose my fear and not think about it. Don’t forget, I was diagnosed but had absolutely no symptoms. The chordoma was found by accident (someone was looking out for me), so it was easier for me because I felt no symptoms.
Now, I’m doing fine with absolutely no issues whatsoever. With the outcome I had, I have nothing but thanks for all the people that were involved with my case. I do get nervous (who wouldn’t) for my yearly MRI and meeting with Dr. Sen, but emotionally I am okay as well. I’m happy to wake up each morning with a good outlook on life.
At this point in my journey I don’t think that I require anything from the Foundation or the chordoma community. Rather, I think about what I can do for the Foundation and community. Sally and I support many charities, but the Chordoma Foundation is different. The Foundation is every bit a part of my success in surviving this cancer. We want to help in any way we can, so we give what we can so the Foundation can further its research toward finding a cure. Even though chordoma is rare, and clival chordomas the rarest of them all, we have known a few clival chordoma patients within five miles from our home. Sally and I became friendly with one such man and his wife and unfortunately he had a recurrence and passed away. It was a very sad day!
What did I learn along this journey? To love life, to forge ahead, and not give up? I know that my outcome is not what everyone experiences. I was very lucky; not everyone is! It’s a long, painful ride for many that suffer from chordoma, and many don’t survive. I sometimes have survivor guilt and ask “why me.” Sometimes when you are afflicted by something like this you ask God, “why me?” What did I do to deserve this?” In my case, I ask, “why me, why was I so lucky?” Now I just want to give back, and give thanks to all those in the Foundation and community who have given me support during the hardest time in my life!
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.