Preface

Preface
My email updates start on May 16, the day after we found out that I had a large tumour of some sort in my left temporal lobe. Let me now give a description of what happened before that, from the first sign of this tumour.

Since I haven’t mentioned it in any of my updates (indeed, there are many things that I haven’t mentioned in any of my updates), I would like to do so now: all of our appointments with the doctors have been very productive, in a variety of ways. In general, I can say that my doctors (and nurses, in the hospital) have been very helpful, patient, responsive, informative and understanding.

First Episode
On December 24, 2004, I jogged a few blocks from my Teekay work building to a friend’s work building, to pick up a gift. When I entered the building, I all of a sudden smelled a really strong smell, like a medical, chemical, or cleaning-agent type of smell. I didn’t recognize the smell. I started to feel woozy, and although I have never passed out before, I suspected that I was going to pass out. I made for the elevator, and made it there. Going up in the elevator I could still smell it, and I wondered if I would make it to the top. I made it to the top, and by the time I stepped out of the elevator, the smell went away. In retrospect, I find it odd that I left the building without wondering why/how the smell had gone away, as I didn’t smell it when I took the elevator back down. Later on, my friend told me that she thought I looked a bit “out of it” when she gave me her gift.

In Korea
The day after my first episode, I flew to Korea, to help set up the computers on a new Teekay ship. My first day in the shipyard I was in the office sitting at a computer and all of a sudden I began to smell the same medical, chemical, cleaning-agent type of smell, and I was woozy. Woozy means I felt like I was part in my body, and part disconnected from it. I could talk, but only slowly. I could move, but I couldn’t do anything intricate/complicated/subtle. I managed to ask if anyone could smell something, and someone tried, and couldn’t. This and all subsequent episodes lasted 30 seconds to 1 minute, approximately.

Later on in the same day, we were onboard the ship and sitting at a computer, and again, the smell, and again, the woozy feeling. Again, nobody could smell it. I knew at that point that this smell was specific to me, not to the room I was in. I figured it must be coming from inside me, but it wasn’t until I was back in Canada, about 10 days later, that I was able to get someone to smell my breath. For the remainder of my time in Korea, I had a few more episodes, and never was there someone around to try to smell my breath.

Back In Canada
By the time I returned to Canada, we (Dhalie & i) had an appointment booked with our GP. Before and after that appointment I had the opportunity for someone else to smell my breath and no, nobody could smell anything. An important change in the episodes upon my return home: I could smell the smell, for 30 seconds to a minute, but I wouldn’t feel woozy – I would be 100% in my body, be able to talk quickly, move quickly, etc. Another change is that after just a few daytime occurrences in Canada, it moved to bedtime – I would only have an episode just before I fell asleep. The frequency was erratic – sometimes it would be every night for a few nights, sometimes every other night, and sometimes there would be several days in-between episodes.

My GP’s take on it (paraphrasing): “It could be this, this, or this. Or, there’s the off chance it could be something neurological. So let’s get the blood tests going, and let’s make an appointment with a neurologist, just in case. When we nail it down, or it goes away, we can cancel the appointment with the neurologist.”

Well, we didn’t nail it down, and it didn’t go away, and so we went to our first appointment with Dr. Woolfenden, the neurologist. Dhalie came with me, and has come to every appointment that I have had; this has been really good, because while I can give my utmost attention to the doctor, she can interject with good questions, clarify things, and take notes. By the end of this appointment I had been diagnosed with a simple partial seizure; the smell is known as an aura. At this point I was decreed unfit for driving and belaying – I might have a more sever seizure, and that could be very dangerous for myself and for others, if I were driving or belaying. (When I am belaying I am helping a partner to climb by controlling one end of a rope, the other end being tied to the partner as s/he climbs up a high wall. If s/he falls, I save her life by holding my end fast. If I had a seizure during this time s/he could die.)

We were really happy to have had such a speedy diagnosis of the simple partial seizure. It was a very good choice of our GP to have this arranged, even though she thought it an unlikely outcome.

After this first appointment, on the advice of a friend, we resolved to write down questions for the doctor before the appointment, so that we would be more organized, and wouldn’t forget to ask anything. We have done this since, and it has worked very well for us. We also asked for a copy of all reports that related to our appointments, which can be helpful to review after the appointments.

In short order I had an electrocardiogram (ECG). The ECG indicated that yes, there was some abnormal activity in my left temporal lobe. It doesn’t say anything about what the cause is, it just points to an effect. At this point Dr. Woolfenden referred me for an magnetic resonance imaging (MRI) appointment. He told us that (paraphrased) “there is a 70% chance that we won’t be able to find the cause, but we will be able to determine that the cause is nothing urgent (not a tumour). There is a 5% chance that you have high-grade astrocytoma tumour, which is one of the most serious types of tumours one can have – it is fatal, giving 9-12 months, with the rare case lasting 2.5 years. And there is a 25% chance that it is something in-between.” We were to wait for the MRI department to contact us to schedule an appointment, and the waiting list for the MRI is usually 3-4 months for someone like myself (age, types of symptoms, etc).

We walked out of there aware that there’s a bigger chance that I’d fall in the 70% than the 5%. While we weren’t super concerned about the rare 5%, it did sit in a corner of my mind, not totally out of sight. We also had a copy of Woolfenden’s report, and noted that he had asked the MRI schedulers to try to get me in within 3-4 weeks instead of 3-4 months, if possible.

We considered getting a private MRI, knowing the wait-list could be so long, and this could, even at 5%, be something very serious. We decided to wait for the MRI schedulers to call us.

A few weeks later (this is a normal timeframe), the MRI office called me for scheduling. Again, things went faster than they could have: she put me on hold for about 4 minutes, and when she came back, instead of 3-4 months it was “can you come in the day after tomorrow?” Wow. That’s really quick.

Dr. Woolfenden had told us that it would take about a week for the MRI results to come back to him, and we would meet with him about a week after that, and if there were a need to come in sooner, they would call us. So the best scenario is, they don’t call us and we see him 2 weeks after the MRI. It was quite the opposite of that. I had the MRI on Thursday, and on Monday I got a call that said “please come in tomorrow, at 6PM”. This meant that the MRI results were rushed to Woolfenden, who was staying late to see us because he was booked during the day. Not good news.

On Tuesday, February 15, I left work at the end of the day without cleaning up anything, expecting to come in the next day, like any other day. From work we went to see Dr. Woolfenden, who informed us that I had a very large tumour (6cm x 7cm x 4.2cm) in my left temporal lobe and it needed attention immediately: I would have brain surgery as soon as possible to remove as much as possible, and then subsequent treatment would be decided upon: chemotherapy and/or radiation therapy.

Wow. A very large tumour. Wow. What does this mean?