Tuesday, August 14, 2007

How this all began

It occurs to me that some of you haven't heard the story of how this all began, so let me give a summary. We were on a fantastic safari vacation in Kenya, with Frances's parents Evelyn and Leon, and their long-time friends, the Chus. All together, we were a group of 18 people. We spent most of a week looking at and taking pictures of all sorts of wild animals - lions, wildebeast, elephants, etc. It was really fascinating. See my other blog for more about the safari.

On Saturday morning, August 4, I suffered a seizure while sitting on the patio in front of our first-floor room at the game reserve where we were staying. I had never had a seizure before, and didn't know what was happening. For me, the first symptom was a sense of great anxiety, but without any specific focus. (I decided I must be anxious that we wouldn't get to the small airport in time to make our plane to Nairobi.) This was followed less than a minute later by a strange metallic taste in my mouth. As I found out later, both are commonly experienced in the initial phase of a seizure (the so-called "aura").

The rest I only know second-hand, because I have absolutely no memory of anything for the next hour or two, until I woke up lying in bed in our room, not knowing how I got to the bed. (I found out later that Frances had recruited 4 strong guys from our tour group to carry me from the patio in front of our room where the seizure occurred into the bed.) Apparently my muscles all went stiff during the seizure, and my head turned sharply to the right, with my arms and legs contorted in unnatural positions. The kids were scared because they didn't know what I was doing, and they told me later that I was yelling "We must get on the plane!!" in an unnatural "possessed" voice.

Then the seizure passed, and I went limp in the bed. At first, Frances would try to rouse me but I could not be roused. After a while (5 minutes?) I would respond to her questions, but my answers didn't make sense. Finally, after another 5 or 10 minutes, I was fully awake and could respond more-or-less coherently to her questions.

At first, we were not thinking about a tumor at all. We thought it must be the result of something I ate. Frances was suspecting the old cheese I had eaten for breakfast, which had some visible mold on the surface that shouldn't have been there. I had eaten the whole slice of cheese, including the mold spots (hey, I was hungry).

Once the seizure was over, and I seemed to be back to normal, we continued with our sight-seeing. We took the small plane to Nairobi as planned, where we were met by Benson from the company running the tour, and he drove us to the hotel. Frances had gotten some valium pills, which can be used as an anti-seizure medication, and had given me some before the flight to Nairobi. So by this time I was a bit groggy, but feeling pretty good. From what I remember, after lunch we said good-bye to Leon, Evelyn, and the Chus, since they were booked on flights leaving Saturday, but we were leaving Sunday. The four of us then went up to our room, and all took naps.

On Sunday morning, we went to the Elephant Orphanage and to the Giraffe Center. Both were interesting, and by this time I was feeling fine. (The valium helped with that!) I resolved to be a little more careful with what I eat - no more moldy cheese! Later in the day, Benson took us to the Nairobi airport, and after the usual lines, delays, etc., we boarded a 747 plane for London, where we would spend 5 hours and then transfer to another flight for Los Angeles. I thought the seizure was an isolated event, and was all finished.

The flight was basically uneventful. I did experience a hint of an aura on the flight, but it didn't become a full-blow seizure. When we got home, we unpacked a bit but then Frances took me over to Huntington Hopital for some more tests, to better determine what caused this seizure. There I met Drs. Girard (neurologist) and Dr. Fineman (neurosurgery), both of whom impressed me very much.

They ran a CT scan, which looked basically normal. But then they did an MRI, and it was clearly abnormal. In the left temporal lobe of my brain, there was a "low density" region, which was consistent with the presence of a small tumor. Dr. Fineman told me that to know more, they would really have to go in and find our just what type of tumor it is. (There are some 140 different types, with very different characteristics and prognoses!)

So my seizure wasn't caused by moldy cheese. It was caused by a tumor. Well, this might be considered "bad news," but I didn't take it that way when they told me. It offered something concrete to explain what was going on. Only once you know what a problem is, is it possible to come up with a plan to to fix it...

So that brings us to today's activities. Hopefully, before this day is over, Drs. Fineman and Girard will know what sort of tumor I have, and maybe (even better) Dr. Fineman will be able to cleanly remove it.

1 comment:

Ernie said...

hi
my husband also diagnosed with brain tumor (pathologist state astrocytoma grade 3 & 4 but oncologist keep saying its gbm. his surgery was on 6/8/2007 few days before yours.
my question is how 'small' was your small tumor?

thank you