Emily

Have you ever had to make a difficult decision? Everyone has to make them from time to time. I can say with certainty, though, that the decision I faced back in 2017 was the toughest I have ever been asked to make. During my second consultation with a neurosurgeon, I was told that it was my choice whether or not I wanted to have a part of my brain removed.

 

Four months earlier I was woken up in the middle of the night by a headache that was so painful that it made me nauseous. This was the second time in the last few months that I was woken up in the worst pain of my life. Other than these two terrible headaches I was a pretty normal, healthy 27 year old, but when I asked my friend who is in residency, she recommended I see a neurologist. Following that appointment, I was referred for an MRI, which ended up revealing a ‘lesion’ in my brain. After consultations with two different neurosurgeons, I was informed that I had a low-grade glioma in my right temporal lobe. OK so now what? According to the neurosurgeon there was no medical consensus as to the right path for me. Brain surgery was an option, with the other option being to ‘watch and wait’ (essentially, do nothing and go back to living my life). And it was entirely up to me.

 

I am a researcher (currently doing a PhD in Biomechanics), and it’s my job to solve problems, so I decided to face this challenge head on  and learn as much as I could about low-grade gliomas. I think it is important here to distinguish that I did not simply type ‘brain tumour’ into Google; I looked up peer-reviewed journal articles using PubMed and Google Scholar. The papers on these sites are the most current studies being done around the world which makes them the best information to use. When I couldn’t get access to papers that I wanted to read I would email friends at other Universities who were able to get them. The more I read, the more I found that given my particular characteristics (tumour location and size, my age, the fact that I did not have neurological symptoms), surgery seemed the best of the two options. I decided to get a third opinion, this time from a very experienced researcher and neurosurgeon at St. Michael’s Hospital in Toronto. I met with him and he agreed that in my particular case, surgery was definitely the way to go.

 

Following surgery, it was confirmed that I had a grade three anaplastic astrocytoma, and that it had grown half a centimeter in only 3 months between my initial MRI and surgery (that is a lot). Due to its size and location, my surgeon was able to remove the entire tumour as well as margins around it, which is a pretty rare thing. And because of the ‘favourable’ nature of my brain tumour, my personality is the same as it was before surgery and I’m still cracking terrible jokes. I have had no significant long-term changes, despite having a fair share of pretty crummy short-term side effects.

 

Unfortunately, my brain cancer is incurable, and there are still cells in my brain now that are very likely to turn into another tumour at some point. Because of that fact, I also chose to undergo 6.5 weeks of chemoradiation therapy, and 6 months of additional chemotherapy. And there is a chance that at some point I will need to have more treatment or surgery, but because I chose to have the surgery when I did, I stand the best possible chance of being able to enjoy as many relatively normal, relatively symptom-free years as possible.

 

The past 18 months have brought on many new challenges, but I could not be luckier to have the amazing support system that I have. My partner, Mark, has been my rock. He has been the best chauffeur, note taker, and chef I could ask for during treatments, and has encouraged me to stay positive, stay in school, and stay active (we crossed the finish line of a 5km together 6 days after my last chemo treatment). I am not eloquent enough to truly express the gratitude that I feel towards all the friends, family, tumour buddies, and even kind strangers that have reached out this year – I have received so much love and support. I even had the great pleasure of attending the Leafs home opener last year as a guest of Nazem Kadri when him and his Foundation chose me out of 3700 applicants for a contest! I still have side-effects and more medical appointments than the average 28-year-old, but I am otherwise very fortunate to be living a relatively normal and high quality life. I hope to become more involved in health care to use my background as a researcher and a patient to help others with their own experiences.

 

Most days I certainly do not feel like a Tough S.O.B., but I at least know that I am brave. I know this because my nephew William told me so. The day I left the hospital following my surgery I went to visit my sister’s family. Following a loud exclamation of “Ewww, Emmy, look at your HEAD!” William asked if I was brave during my visit to the hospital. I responded to his question with a question: “What do you think is brave?”. I’ll never forget his response because it made my heart melt a little as he talked about his younger brother. “James went to the doctor and he got a needle and didn’t even cry. He is SO brave!” And since I got eight needles in the hospital and I didn’t cry, that was the day that I found out I was at least eight times braver than a two-year-old!