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On a Friday afternoon in the fall of 2011, on my way to lunch with my husband Sean, I made a quick stop to pick up a copy of an MRI taken a year prior for increasing and changing migraines. Sean waited in the car while I ran in to pick up the records. In addition to the CD, the envelope included the radiologist’s report which I pulled out to read…just out of curiosity since my neurologist had, after all, told me many months before that my scan was just fine. The report was short, only a few lines. It stated that I had a lesion in the base of my skull, in something called the clivus. The differential diagnosis – a short list of the most likely diagnoses – listed clival chordoma at the top. We didn’t make it to lunch…

Over the course of that weekend, I learned that this type of tumor was not just uncommon, but exceedingly rare, occurring in only one in a million people. While the radiologist viewing my film had correctly identified the tumor, my treating neurologist failed to see it and inform me. I learned that many patients similarly confront delays in diagnosis and chordomas are often mistaken for other types of tumors.

Information was hard to come by and what little I could gather was not promising. Treatments sounded dreadful and the prognosis dismal. The compounding impact of being diagnosed not only with a life threatening disease but one that is so very rare is difficult to put into words. Even among top neurosurgeons, few see more than a handful of chordoma cases in their entire careers. No one was going to have stories of family members, friends or co-workers that had gone through this before. I was alone and walking a completely unknown path. That would, however, soon change.

One of my very early searches led me to the Chordoma Foundation and a strong, knowledgeable community of survivors. Within days, I was in touch with other patients and gathering information that simply wasn’t available anywhere else. Most importantly, I came to understand just how critical my first surgery would be and not to rush into treatment. Fortunately, chordomas are usually slow growing. I was rescanned within days and thankfully, the tumor had not changed over the course of the year since it had shown up on the first MRI. The migraines were unrelated, this was an incidental finding. The collective support of this group was literally a life-line through some of my darkest of days. Not only was I able to keep moving forward, I now had a plan.

The next few months were spent consulting top neurosurgeons and oncologists who had experience in treating chordoma. I covered all the bases, got answers to my growing list of questions and with the encouragement of family and friends (many of them now virtual) I made my decision.

My tumor was resected in March of 2012 by a very experienced team of doctors in Pittsburgh. My neurosurgeon had operated on over 100 chordomas. I recovered quickly but there were a few bumps in the road. Decisions needed to be made about radiation, unforeseen complications occurred, treatment plans changed at the 11th hour and I required a second surgery to have a shunt placed. My gratitude to the phenomenal medical team who continues to get me through this with a promising prognosis is indescribable.

For many months, I did a lot of wishful thinking, not wanting to face any of it. Heading into brain surgery wasn’t easy and living with a disease carrying such a high recurrence rate has felt, on some days, to be more than I can bear. I am not particularly brave or courageous, but they say courage is not the absence of fear, it is doing what is necessary in spite of the fear. In the words of Robert Frost, “the best way out is always through”. These words have helped me find the courage needed to face the hard things that come with a disease like this. I am reminded of them every 6 months when I board another flight to Pittsburgh, when I walk through the hospital doors with the worst kind of nausea, when I lie on the table and slowly slide into the MRI tube and during those endless moments of waiting for the results. My anxiety ebbs and flows, but thanks to the Chordoma Foundation, research is accelerating and with exciting new findings, there is real hope for desperately needed treatments.

As I approach November 11th this year, 3 years from that day that I first read the words clival chordoma, I reflect on my continuing journey and how one’s perspective alters over time. In the early days, I was certain that I would never be the same. I experienced profound grief for the “old me” and my “old life.” And while it is true that I am not the same and life is different now, I am still me and life continues to hold much happiness, laughter, joy & possibility. I certainly wouldn’t have chosen this journey and I am not a “silver-linings” kind of girl, but it’s hard to deny the unique intensity and beauty of life that comes with a real understanding of how fleeting it all is.

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.

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