Since I last wrote we’ve had Christmas and a new year. It’s been a pretty wonderful time. My step father has been in town from Kathmandu, my older brother and nephew got into town on new year’s eve and are staying through until tomorrow. It has felt great to have family around, and has felt great to have Hill be a part of that family.
The combination of the avastin and the oral 5FU have left me feeling pretty flat. No nausea, really, which is a huge relief, but no energy either. The pins and needles in the hands have persisted to enough of a degree that I haven’t really trusted myself to work in the shop. I have been using the time to learn some very powerful 3D CAD software (solidworks). If I can’t actually go out into the shop and build it, at least I can model it in CAD and take a look.. see if it’s worth making once I’m able. That’s been pretty fun.
Yesterday morning by 11:00 I was in an MRI tube having my brain scanned. Very early yesterday morning (2:41) I had a pretty big seizure. I’m nearly certain that it was the scariest thing I’ve lived through. I got up during the night to use the bathroom. I was pretty dizzy on the way there, and felt disoriented on the toilet. After an unproductive sit, I went back to bed.. still dizzy, and lay down. I’ve been having some chest pain associated with exertion, just as I did over the summer when I got anemic. When I lay down in bed, my chest was tight, and sore, and I could feel my heart pounding. I must have blacked out. I woke up convulsing and pissing myself in bed, with the lights on, and Hillary standing over me crying. It was about 15 or 20 seconds before I could even respond to tell her I was ok (and apologize for wetting the bed.. how embarrassing). As soon as I was able to move I went to the bathroom and puked up the contents of my stomach. Hillary called my parents, and they were there in about 30 seconds flat. My step father is an MD, and asked the important questions. He called Alberto. I went back to bed, exhausted.
The scan ruled out a bleed in the brain, and RPLS which is a pretty rare but reversible reaction to Avastin. No one has any other specific ideas about what might have caused it. We’re in a bit of a wait and see pattern now. If I never have another seizure, it will be too soon.
In researching the whole thing, Alberto discovered a rare (2 in a 1000) alergy to the oral 5FU that causes bronchio spasm (the same thing that Asthmatics suffer). He’s pretty sure that’s what’s causing the chest tightness/pain I’ve been experiencing (though not the seizure). Needless to say, I’m off the drug. Back to the I.V. version. I’ll start up again in ten days. In the mean time, I get a little break. I need it.