Okay, where were we? I had to glance back at my last blog to figure out a good starting point. That was published 12/24/17 and titled “Seizure at Starbucks.” I have a scar on my head like Harry Potter (imagine Harry Potter except 2 parallel lightning bolts). These are from my personal Voldemort, glioblastoma multiforme. I also noticed my right eyeglass lens couldn’t be completely cleaned. I guess you cannot completely wipe away a scratch. I brought them into Family and Pediatric Eyecare Center down on Monroe, and they told me my lenses were still under warranty. Yes! I needed some good news after this seizure.
I started on Keppra (an anti-seizure med) in the Spectrum Butterworth Emergency Department on the winter solstice. No driving, assuming nothing else happens (a big assumption with GBM) until the summer solstice. Despite many kind offers, I have settled into a routine for looking for drivers. I look at the schedule, figure who is going to the same place, and text them at least 24 hours prior. Everybody has said yes so far with no complaints even though my house is not exactly en route for many drivers.
I was also given Ativan pills to take as needed from the ER. Intravenous Ativan is usually an acute treatment of status epilepticus (a persistent seizure), but I am not really sure what I was supposed to do with pills. They did come in handy after I went to see my neurooncologist January 10th. GBM is just like ‘rocket surgery’ sometimes — very difficult to sort out subtle changes. We were told that I had recurrence, and then after Tumor Board, more likely just treatment effect. Who knows? I feel fine, just hyperaware of any twitch. It was a good practice run for my sister, Katie, looking into alternative treatments and trials. I have a 4 week follow-up MRI to help sort it all out next week.
I am actually in the process of switching to lamictal which is an anti-seizure with mood stabilizing ‘side effects’ (or maybe it is a mood stabilizer with anti-seizure ‘side effects.’) Dr. Kumthekar said she would just chart it was for seizures.
“Ah, you can say it is an anti-psychotic in the chart…I feel a little crazy.”
Okay, I did not say that, but this is my blog. Not even the president gets to call this Fake News.
Since I left Chicago without my infusion 1/10/18, I needed to return a few days later to get my pembrolizumab. Fortunately, we were trying to figure out when we could take our kids to Chicago, so the timing was perfect. The girls went to the American Girl Store, and my parents and Connor stayed at the hospital ‘getting their steps in’ as my Mom likes to say. Connor even snuck into the infusion area (nobody under 12 allowed at Northwestern). Don’t tell anybody.
I had to review my pictures to figure out what else happened this last month. Maybe I am just still postictal (confusion after a seizure usually only lasting about 5 – 30 minutes). It must have been closer to 30 minutes because I woke up in the ambulance with my Patagonia fleece cut off. Staci said I had a pretty blank stare in Starbucks. I don’t remember her even arriving or talking to me. However, that should have worn off by now.
Let’s see, Constant cousins from Texas visited, I bought a fat tire bike (my excuse was transportation until I could restart driving), went to an MSU basketball practice, redoing our basement and continued part time work and following kids to various sporting events.
On January 20th, Connor and I went to an MSU basketball practice with Roger Jansen, Darryl Elmouchi and their sons. Darryl read my blog about going to Midnight Madness and struggling to get autographs, so he hooked us up with Roger and front row seats for a practice. It is just mind blowing how big and athletic these guys are up close. Even the walk ons were all conference or all state.
I am back in the pool on Mondays and Wednesdays with EGRA Masters, and still on the stationary bike and treadmill on the other days. Swimming was a bit unnerving at first after a seizure, but 3 of the swimmers in my lane swam in college and are currently physicians, so I think I am safe as possible. Allison was part of an EGR Middle School record breaking 400 free relay at the middle school state meet (3:51 for those with any swimming knowledge). Connor is staying busy with swimming, futsal, and rec basketball (I am an ‘assistant coach’ to Coach Glen only so Connor can be on Grady’s team). Queen Elizabeth is gearing up for the “A” meet in a few weeks, and we are just hoping she will do her best events, not strategically figure out which events she will place better. Mia is still going to Goldfish swim school, now in the last group prior to moving to the swim team there. Since she goes at 11:30 AM on Tuesdays, and most kids are in school if they reach this level, she essentially has a private lesson each week. Staci is busy managing our basement remodel. The workers quickly realize she makes all the decisions around here about interior design.
So that’s where we are at the end of January, 2018, 27 months into this unrequested ‘journey’ with glioblastoma multiforme. There is no definitive evidence of recurrence, but I have had a second brain surgery and a grand mal seizure. I still feel fine on a day to day basis. A little anxious, yes, but we have plenty of meds for that (not that there is anything wrong with that?).