The Latest
Posted by Casey on December 17th, 2008Hello everyone! Thought I’d update the site with some recent medical stuff to get you in the loop.
I had been doing pretty well lately, with only occasional seizures which were very minor, along with some migraines. In the last couple of weeks I started having an increased frequency of what are generally very quick flashes of a seizure. I can only describe them as a sneak preview rather than getting the real thing. But last Friday, out of nowhere, I had a full seizure much like I first experienced back in my days at Target before I even knew about the brain tumor. It lasted about 30 seconds, and came complete with the aura, metallic taste in the back of my throat, the numb finger tips, a bit of dizziness, and then of course the nervousness that quickly followed. It had been a long time since I last had one like this, and it was a creepy feeling to experience it again.
I called Dr. Slopis in Houston right away to let him and his nurse know what had happened, and to get their recommendation on what to do. They asked that I get an EEG as soon as possible so I called in to Abbott and they were actually able to get me in about an hour later, which was pretty miraculous since it was a Friday. The main reason to have the EEG so quickly was to study whether or not it was truly seizure activity that was causing the symptoms, or possibly some other issue like anxiety. It sounded all too familiar, and I knew from the very start that it was a seizure. But I was glad the doctor wanted to be thorough.
I talked to some people at work about what was going on and that I needed to leave, and then left for the EEG. It was very standard practice, nearly identical to the steps used in Houston. Lots of little nodes hooked up to my scalp, face, chest, etc., followed by random breathing, strobe light and calming activities. During all of this, a computer was recording, paying attention to the amount of brain activity that was occurring (and where it was occurring) while these activities took place.
Since it was a Friday, I didn’t get the official results until that following Monday. Indeed, it was a seizure. The official scaling of the seizure activity during the EEG was “mild to moderate” in severity. And word was passed to Houston. Dr. Slopis’ nurse contacted me right away to let me know that I should increase my dosing of Trileptal from 5 pills (1500mg) to 6 pills a day. It was a small increase, and it wasn’t much of an issue to turn my 11 pills a day total into 12. I was just hopeful it would work. That weekend, and early last week I was still having minor episodes. Not the full thing, but frequent little hints. So I was quick to go home and start taking the new dose. Since then it’s been sort of back to normal. I’ve had occasional hints of them, and today I thought one was coming but never did. I’m thinking good thoughts that the pills are working.
As I mentioned last time, I’ve be asked to come back early for my next checkups in Houston because of the MRI results in October, so I’ll be going on January 9. I’ve just been ignoring that for now as it’s not really worth worrying about. The part I’m not ignoring is the two weeks prior… I leave next Tuesday night for San Francisco to spend the holidays with my family. And on New Year’s Day, Jill and I leave for a week of skiing once again with the cancer survivors in Park City. So the checkups can wait!
I hope you are all doing very well. For the Pille Family, a reminder that the DVD is available if you are still in need. Just let me know.
Happy Holidays!
“Best wishes, Casey! Have a wonderful Holiday with your family! :)”
“Stay well & I’ll be sending healing thoughts your way my friend :-)
Happy Holidays Casey!”
“Hang in there, Casey, thanks for the update. Let me know when we can do lunch as soon as your schedule clears a bit (I’m also out til Jan 9 but I leave much later than you) Have a great holiday.
Best,
Alfie”
“Take care hon. Have a wonderful holiday and give me and T. a call when you have time to get together. Miss you –Lara”
“Happy Holidays Casey. Sure hope you don’t have any more seizures and that they have good news in Houston. Your attitude is so amazing. Hope to see you soon.”
“Thanks for the update Casey. I was having a rotten day and feeling terribly sorry for my (young, beautiful, healthy) self, and then I got your email. Thanks and Merry Christmas!!!!
Cara”
“i love you.”
“Happy New Year Casey!! Here’s to a happy and healthy 2009 and beyond! Not sure if you knew this, but Sydney has a tumor in her cheek. It’s benign, but still scared the hell out of me especially since she is only 5 months old. I guess it will go away on its own so she goes back in for her second checkup on Tuesday. (12/30) Thoughts and prayers are headed your way to you and your family.
Love,
Lisa”