Lauren

I woke up on a Sunday morning and realized I wasn’t seeing straight and had numbness in my left arm. It was December 8th, 2024. I have a history of migraines and was amidst a four-day episode that was not letting up. I called my neurologist and they told me to head to my local ER immediately. 

Long story short, the first hospital sent me home that Sunday afternoon, and when I woke up Monday still unable to see straight, I went to Mass General Hospital in Boston. I had an MRI and many neurological tests completed. I was first diagnosed with a sixth nerve palsy, then a neurosurgeon appeared in my room and stated that I had a tumor pressing on my brain, known as a chordoma. I had never heard of this; my mind spun. 

Within hours I had a surgery date. Within days that surgery date got postponed because, in true working-mom fashion, I caught strep throat. Did I mention I have two young children? At the time my youngest had just turned a year old and my oldest was three. 

I had an endoscopic endonasal surgery on January 6, 2025 at Mass General. Dr. Curry and Dr. Holbrook removed my entire tumor during surgery (which was very small compared to many stories I’ve read). I was under for eleven hours, and they did an MRI partway through surgery to ensure they got it all. I experienced a CSF leak which they repaired. 

After about two or three months of debate, we opted against treating with radiation, mainly due to my age (31 at the time.). Dr. Shannon McDonald (previously with Mass General) presented my case to the National Tumor Conference and was a true light for me through an extremely shocking process. While reviews were mixed, the ultimate consensus was to not proceed with radiation due to my age, the likelihood of being impacted negatively by side effects, the size of my tumor, the fact they got it all in surgery, and a gut feeling.

Ten weeks post surgery I was able to lift and carry my daughters again. I cried the first time I held my baby again. I returned back to work. Five months post surgery I traveled to Switzerland, Germany and France. I paraglided over Interlaken in Switzerland. Nine months post surgery I began working out and lifting weights again. I am now one year and four months post surgery and I am leg pressing 450lbs (three times my weight).

I have scans every four to six months. I can’t really smell like I used to, and my taste has changed—nothing is as strong anymore. My eye goes lazy sometimes, and we don’t know why. I still get extreme migraines, but am managing the best I can.

My advice? Advocate for yourself, stay in tune with your body, lean on people who fuel your soul, and whatever it is that you have to do, do it—even if you’re scared. That’s how we show ourselves we are brave.

Finding resources on the Chordoma Foundation’s website and the Facebook support group truly changed my life in such a lonely time. It still changes my life. Every day that I see a post, I am touched. It’s simply nice not to feel alone.