Almost five years ago, at the age of 25, I began waking up regularly with excruciating headaches. Normally, I would sleep through the night but those nights my head hurt so badly that I would wake up with tears in my eyes.
I was not usually one to complain about pain, probably something that I learned playing hockey, often being too proud or too stubborn to listen to my body, and force myself to play through the pain. I remember thinking maybe I had a concussion, or perhaps it was stress. I was looking for anything to explain the symptoms.
I finally saw a doctor who did the typical neurological tests and, luckily, scheduled me for a CT scan. Two days after the CT, I received an appointment for an urgent MRI, and I knew something was wrong. Little did I know, this was the first of many MRI scans.
I got the diagnosis. It was a skull base chordoma. We were referred to a surgeon and booked a date for August. I remember feeling scared, and pessimistic about how the surgery would go. It was explained as a brain tumour, and that it needed to be removed but I wasn’t clear on what chordoma was or if there were other treatment options, and didn’t get a second opinion.
At the time, I thought that I was lucky. The tumour was caught, surgery went well, and although the recovery was tiring, after a few days in the hospital I was home. Two months later, I had one high-dose treatment of gamma knife radiation to try to shrink the remaining tumour. I am very grateful that the surgeon was able to remove the majority of my tumour safely. I trusted the doctors who had experience with skull based surgeries and thought it was my only option.
Remarkably, my tumour was mostly gone and my worries about chordoma with it. I rushed back to work about two weeks after surgery and resumed playing sports shortly after. I continued to live my life knowing I would always have scans, but I wasn’t worried.
However, in January 2021, I received unexpected news that the chordoma had recurred or regrown less than four years later.
I was shocked. An oncologist recommended proton therapy but because it isn’t available here in Canada yet, I was referred to MD Anderson Cancer Center, in Houston, Texas. The following months were difficult, as I frustratingly navigated two different hospitals, countries, and health care systems.
After meeting with the new medical team in Houston, I felt confident that I was dealing with chordoma specialists. However, I was nervous when the doctors determined the plan for the best outcome involved another surgery before proton therapy. I could remember how scared I was going into the first surgery. I can still see the hallway in my mind, as I was being wheeled into the operating room. I tried to use this memory to visualize and help prepare myself for the second surgery.
During that time I was able to connect with a few others diagnosed with chordoma which helped mentally, knowing others who had similar experiences. Being such a rare tumour, I had yet to meet anyone with the same diagnosis.
After surgery, I woke up in the hospital, tired, in pain, and left with a 6th nerve palsy. During this time in the recovery room, I was so fortunate to be connected to Kate, another young woman who was also in the hospital, all the way in the UK recovering from her surgery. Soon, we had a small Instagram community of young women together.
Six weeks later, we were going through proton therapy, sending waffle face selfies (from the mask) to each other and comparing side effects. Relationships like this have made me wish I had connected to the Chordoma Foundation sooner, both to learn more about my initial diagnosis and treatment and so that I wouldn’t feel so alone in this diagnosis, which I had been living with without fully understanding it.
Since the recurrence or regrowth, it’s been helpful to learn about others’ stories and have the support of peers. Now I hope I can be there for others by sharing my story and experiences, and participating in the Natural History Study.
I am grateful for the doctors and outcomes to this point and all the friends who have helped along the way as well as the work and research the Foundation continues to do. I am also grateful to my partner Tim for traveling with me 2,500 kilometers to Texas, four times, during a pandemic, to receive treatment.
Now, as I navigate post-treatment for a second time, with more physical reminders, anxiety, and trauma, I am grateful that I have more connections and information. It’s hard to believe everything we’ve gone through over the past year and I am looking forward to an important milestone this summer: celebrating five years since being diagnosed.
We invite you to share your 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. And if you need help navigating any part of the chordoma diagnosis, treatment, or survivorship journey, contact our free Patient Navigation Service.