1. Beginnings

This is the story of my experience as a brain tumor patient and survivor. I hope this will be valuable information for people who have been diagnosed with a malignant primary brain tumor. Whether you are a patient, survivor, caregiver or just casually interested, welcome to my website.

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My family before this all started. Clockwise from top, John (your author), Stephanie, Kevin and Frances

It all started on February 14th, 1997. I was at the office, in Toronto, contemplating a romantic Valentine’s evening meal with my wife. As it was Friday afternoon, I was going to leave early, stop by one of the flower sellers on Front Street to buy a dozen red roses, and then catch the train home. Then the phone rang. I took the call, from a software vendor I’d been having problems with. It was a somewhat heated conversation. When I hung up I tried to get up from my desk in order to get my coat. Instead of standing up normally, I went crashing to the floor.

I tried to get up, but I couldn’t. It seemed like I had no control over my right leg. Every time I attempted to stand, it just gave way beneath me and I ended up on the floor again. After several futile attempts, I dragged myself back into my chair and checked myself over. I could clearly move my leg, and when I touched it I could feel my leg, but if I wasn’t looking directly at it I had no sense of where it was in space. Consequently any co-ordinated movement was difficult for me. In the back of my mind I knew that it was something serious, but I managed to convince myself that my leg had just “fallen asleep” from being in an awkward sitting position too long.

In retrospect, I should have dragged myself directly to one of the numerous hospitals within downtown Toronto. I’m a stubborn person, so I made my way slowly, through the commuter crowds, to Union Station instead. I live about an hour east of Toronto, Canada, so I normally commute by train as far as Oshawa, and then drive the remaining 15 miles home. By the time the train was halfway to its destination I could no longer pretend my leg had just “fallen asleep”. I had no idea how I was going to drive home from the train station. I walked across the frozen parking lot to my car. With my leg function lost, I had great difficulty even getting my leg under the steering wheel. I should mention that I’m well over six feet tall and around 280 lbs., so shoehorning myself into a Dodge Shadow is challenging at the best of times :-). So I called my wife on my cell phone and asked her to come pick me up. I just told her that I had car problems.

When she arrived, I told her what had happened and we drove to the local hospital, a couple of blocks from my house. The local hospital doesn’t even have a CT scanner; it is really just a triage station for a larger hospital in Oshawa. The ER doctor checked me over and suggested that I might have had a stroke, but was baffled by the fact that only my leg seemed to be affected, not the entire right side of my body. He referred me to the larger hospital in Oshawa to get a CT scan the next morning. The scan revealed a “lesion” high up on the left side of my head, probably a brain tumor. I was then asked to make my own way to a hospital in downtown Toronto for a consultation with a neurosurgeon. By this time it was snowing heavily. A friend picked me up from Oshawa General Hospital and drove me past numerous spun out cars on the highway. I thought that if I didn’t die from the brain tumor I’d probably be killed in a traffic accident on the way to Toronto.

The neurosurgeon at Toronto’s Wellesley Central Hospital (Dr Richard Perrin) was called in to attend to me in the ER. He looked at the CT scan I’d brought with me and pronounced that it was definitely a tumor of some sort, but there was so much “edema” that he couldn’t tell how large the actual tumor was. He said, from its location, that the tumor was probably malignant. Initially he planned to resect as much of it as possible, but first I had to wait for an OR slot. It was Saturday night, at a downtown hospital. The operating rooms were flooded with the usual downtown weekend trauma cases. I was admitted, but it was not until Monday morning that I had what turned out to be a biopsy. After being fitted with a painful stereo-tactic frame, I had another CT scan and was wheeled into the OR. Four hours later I woke up in the recovery room. I had already been started on Decadron (to reduce the edema) and Dilantin (to prevent seizures). I did not get the biopsy result for another two weeks, and when I did I was told merely that it was non-diagnostic…┬Žnot enough material to make a definitive diagnosis.

A week after that I was admitted again for a second biopsy. This time the result was Glioblastoma Multiforme. I had spent a lot of time on the Internet between stays in the hospital, and knew that a Glioblastoma (or GBM for short) is as bad as it gets. I have read that the prognosis is a dismal 6-12 months from diagnosis. My neurosurgeon told me only that it was a terminal condition, and that in the short term he expected me to do well, because at 41, I was still young for this disease and I was in good health otherwise. Nevertheless, it was a devastating diagnosis. About that time I confided to a neurosurgery resident that I found my brain tumor research on the Internet was extremely interesting. He replied that it is, but only if you don’t have one!

The tumor was inoperable, at least in the opinion of Dr Perrin. I arranged to get a second opinion from Dr Mark Bernstein at the Toronto Western Hospital. Dr Bernstein is perhaps the foremost neurosurgeon in Canada. He is affiliated with the University of Toronto and has access to a lot of the same hi-tech equipment used by the best neurosurgeons in the U.S.A. However, Dr Bernstein was in agreement with Dr Perrin on the question of whether my tumor was operable.

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