How It Started

I guess no one expects to hear the words brain cancer, especially when you’ve already been told it’s not brain cancer. It started with symptoms that mirrored a stroke, one side of my face was slightly drooped and my left eye had already started to swell shut, but had picked up speed quite quickly. I was often getting stopped and asked if I had Bells Palsy or a stroke because of the deformities. This is when I finally reached out to my family doctor.

Upon the initial appointment, she also agreed with me, it looked as if though I had a stroke. And we both agreed that a CT Scan was the way to go. Results didn’t take long to come back. No evidence of having a stroke, but it was clear that something was going on. My eye was shutting more and more as the days went by. Driving at night became impossible and was recommended to stick with daytime hours of driving. Not a problem, my job was during daylight hours.

After an unsuccessful CT Scan, I was referred for an MRI. Sedated, and put into a tube with loud and scary noises, I took it like a champ. Those results took a little longer to come back, but my doctor called as soon as hey came in. “You have a spot on your brain stem that I’m concerned about. I’d like to send you for another MRI and I’m also going to be reaching out to Neurology for a consult as well.”

Six weeks later I went for the next MRI. Thank goodness for sedation because I do not tolerate IV’s well and this type of MRI needed a special kind of dye injected into me to light up different areas of my brain. My husband said it didn’t matter how loud he played his music on the drive home, my snores drowned it completely out. It was a nice nap though. 

Brain tumour was the next words used. It wasn’t believed to be cancer, but at that point our family doctor had done all that she could do and we were sent off to meet the neurologist. He was funny. We both had thought he was a great doctor. He showed us comparisons from the first MRI to the second and we could see with our own eyes that it had grown. At this point we were praying it was an MS tumour, but we came to find out that MS tumours tend to shrink, not grow. 

Our next step was a lumbar puncture, or also known as a spinal tap. He would be able to tell from the fluid if I had MS. I will honestly say that it was the most traumatic experience that I have faced so far. Even with sedation, it went far worse than expected. There are nerves that float in your spinal fluid and one decided to cozy up to the needle. It felt like I had ten tasers on my leg, all going off at once. Screaming and crying and unable to keep still, the nurse had to run over and hold my leg down as I sobbed and sobbed until the nerve passed by the needle. 

These results took even longer to come back as they had to be sent to Toronto for proper testing. The first thing that came back was that there were no malignant cells in that particular sample, however, that doesn’t mean they aren’t there. When the banding came back clear of MS, he spoke with neurosurgery. Given that it’s located right on my brain stem, they refused to biopsy. One slight move could kill me. This is when I finally stopped working.

We completely bypassed neurosurgery as they referred us off to a Radiation Oncologist. No one had said cancer to us until we pressed the other doctors involved. My parents and husband packed up to head in to meet the oncologist. The first thing I was able to ask was “Everyone is dancing around the question. Can you please be straight. Do I have brain cancer?” “Yes, though we don’t know what kind, we’ve narrowed it down to two different kinds.” To which my husband asked him to be straight up and tell us if this could be cured or are we just buying time, and if that is the case, how much time. He couldn’t tell us if I had months, a couple years or many years or exactly what type of tumour, but we knew it wasn’t curable and that we are only buying time. I could have a few months, a couple of years or decades.The only way that could be done was a biopsy, but he did find someone who was at least willing to look at my case. Being bipolar, I quickly jumped on wanting the biopsy. I wanted to know how I was going to live my life going forward, how much time I had left with my husband and kids. There were many conversations that day that changed my mind.

We learn about the type of radiation I’m going to be getting. A mesh mask is going to be made to be put over my head and clipped to the table so I can’t move. The laser will hit the same place each time. 30 rounds, Monday thru Friday, not on holidays either. It equals out to 7-8 weeks. I also learned from this doctor that he had been speaking with the medical oncology team and that I would likely be starting the chemo pill, but that would be discussed with medical oncology. He proceeded to do a physical, my eye failing as we had expected. After that was done he asked us if we had any questions. My husband and father did but at this point I was too far into my mind to remember what they were. 

When the doctor left the room, my dad went to meet my mom in the waiting room to fill her in while we went over a large amount of medical files pertaining to my case and a prescription for steroids and a stomach pill to start the next morning. The drive home was a blur. I know we talked but I can’t remember what was said. We came home and picked up my new medication. We spent the rest of the day holding each other and crying. Our journey was about to get very interesting the next day.