I wrote this a while ago (February 2007), but apparently did not post it. If I recall, I decided not to edit or spellcheck it to document my spelling and give it a "raw" feeling. Sadly it looks as if my spelling has not improved much.. oh well..
Being awake for brain sugery is interesting but not fun. Actually I'd describe it as terrifing. But I'm getting ahead of myself. On my first Thanksgiving away from home I had three episodes of numbness on my right side that lasted about five minutes and were spaced about half an hour appart. I thougt nothing of it until a week later when it happend agian. Went to school clinic, they sent me to get a CT scan. Later that afternoon they wanted me to go for an MRI first thing in the morning, so I did and the tech seemed concerned. Later that evening I went to happy hour as I often do Friday nights with my freinds. Before I got a quarter into my first beer I got a call from the clinic telling me to come in as soon as possible. So much for beer...
At the clinic the doctor told me I have a brain tumor and called an ambulance to come take me to the hospital. I felt rather silly riding in a strecher on an ambulance when at that point I was fine – apparently protocols must have kicked in. They got me to the nerosurg ward and after considerable digging got an IV into me. IVs and I apparently do not get along. They said they were going to operate tomorrow and were going to send me for a more detialed MRI. The MRI tech tried to inject the contrast medium into the IV but it burst – a common theme – so just used a needle. Then when I got back to my room: more digging. I hate IVs.
Next day (Saturday) my parents flew in. The docs decided they needed more specialists for the surgery so posponed it until Thursday. I had a meeting with the lead surgeon on Sunday. He explained the procedure and that I would be awake because the tumor was at a difficult spot close to my language centers and control over my right side so they had to map out what controls what by stimulating and seeing what happens. I went to lunch with a whole crowd of my friends and my parents. I think my parents were rather overwhelmed (grad students in math: scary), but I had fun. Then my sister arrived and I spent the next few days at home with family and friends, and a friend who had just left drove right on back. I went with friend and sister to get my hair cut short before the surgery. It went by fast but at least I got some time with them before my life changed even more than expected.
On Wednesday afternoon we checked back into the hospital, they did another CT, this time with magnetic stickers all over my head. Then digging. Next morning: 5 hour surgery awake. More needles and so on. They gave me a drug to make me forget but it didn't work. The scariest thing was two siesures. I think that was when I lost my language abilites and right side moter control, but it's hard to tell. For a while after that everything is confusing. The docs were dismayed – they thought there was minimal damage until the end. I think they were also baffled. Things never go as planned with my family and docs, were always supprising them. And I continued to supprise them.
The pathology report was not good. They initialy thought it was grade 2 of 4. Relatively good prognosis: 10-15 years. But after surgery they found it was grade 3: maybe 3-5 years with radiation and chemo. Also at that point they thuoght the brain damage was more permanet, so decided to go back in and add chemo wafers, since the damage was already done, in January.
My father and sister had to go back home for a while, while my mother stayed. I finaly made it out of ICU and into rehab. At first I could not talk or move my right side. I was in rehab most of December and first few days of January. Slowly I regained control over my right leg. I can now walk, althogh with a limp, but that's fine. One night just before Chrismass I sudenly started talking a little bit. I gained back some motion in my arm. When I could walk again I stubbornly refused to use the wheelchair anymore and made it a point of walking as much as I could, and it has paid off.
They changed their mind about the chemo wafers – too risky. And I went home January 7th. Home by the way, is Seattle. I was in Davis (near Sacramento) for grad school. I used to be afraid of flying, but knowing your going to die soon anyway makes you fearless. I also was afraid of needles but those little needles used for most things are a piece of cake now. Funny, I used to be such a wimp. Except for my right arm I am now stronger than ever before. I still have trouble talking and spelling, but it is improving. I hope to go back to grad school in the Fall, but for now I am getting radiation and chemo from the University of Washington and spending time with my family.
I wrote more at Brain Saga 2 and Brain Saga 3.