I had an eventful 5 weeks since my last ambiguous MRI. First, I got a second opinion at Henry Ford, mainly because they have a research trial I am interested in. The consensus there was that I had recurrence of GBM. Also, I had another generalized seizure. With Henry Ford’s opinion and that seizure, I moved up my follow-up MRI at Northwestern from 6 weeks to 4 weeks. This MRI, however, showed no change compared to 4/11/18. This is not consistent with recurrence since once this cancer recurs, it recurs with a vengeance.
The day I had that seizure, I worked out for about 2 hours in the morning. I ran 9 miles on the treadmill, lifted weights, then biked to MVP for a 1000 meter swim. That was an extreme day by my standards. That was peak training for the Riverbank run.
At MVP, I told lifeguard Karyl that I had seizures, but none since 12/21/17. The sign by the pool said, “Swim at your own risk.” That scared me a bit. Lifeguard Karyl also worked as an ER nurse. The stars were aligned for me that morning.
“Are you on Keppra?” the lifeguard / ER nurse asked.
“Not anymore,” I said, impressed with her seizure med knowledge. “I transitioned to Lamictal.”
“You should get a medical ID badge. That way, if you have a seizure, everyone can read your identification and contact number.”
“Good idea,” I said, thinking that was a good idea. Later that very day, I had that seizure at my house around 9 o’clock. Well, damn, I am not going to be driving again until 10/24/18 (or maybe never). So much for my the summer solstice celebration.
I don’t really know what my aura is, I am simply aware that I am going to have a seizure in about 10 seconds or so.
“Staci, I am going to have a seizure,” I said.
“Lay down on the ground,” she said. Good idea, I thought for the second time that day.
She took my glasses off and I started to seize. The seizure began with my right arm contracting violently without my permission, then my right leg, then on and off for a while. My head starting hitting the carpet, and I lost consciousness. I woke in my postictal haze to see ER doctor Amy Bishop in our house.
I am not sure what triggered the seizure, be it too much exercise or taking my lamictal a little erratically (that day 5 AM and 9 PM). I never missed a dose, but took it whenever I remembered. Now, I am now setting my alarm for 5:55 AM and 5:55 PM to take almost exactly 12 hours apart (within 5 minutes or so).
My kids witnessed this seizure. Staci didn’t tell them to go out of the room, but they all congregated in Allison’s room. Connor was first to come back and sit by me afterward.
“Does it hurt?” he asked. “I was scared and worried.”
“Hum, not really,” I lied. If you have a partial seizure and you have extreme right sided contractions while bouncing your head against off the carpet, it certainly does not feel good.
He offered to read to me, and then started quizzing me about NBA facts.
“Who is the best player of all time?” he asked.
“Lebron James,” I said, knowing he is not a big fan.
“Who are some of the best players in the NBA?”
“Magic Johnson, Larry Bird, Isiah Thomas…”
“What teams are in the playoffs?”
He smiled and knew I was just teasing him by answering great teams from the 1980s. He sat with me for a while until his sisters came out of Allison’s room.
I am taking pembrolizumab locally nowadays at the Lemmon Holton buidling. This is a quick 30 minute infusion that takes more time to prepare than actually infuse. Why stop what is possibly working for me and has no side effects? The studies on this drug are mostly null (no benefit), but there is subset that may benefit. I do not really want to know if I am part of that subset. I believe it works, so it does.
Figure: Upper left, my support group during my infusion: the always cold Jeff Decker. Upper right, my personal ER doctor and race companion, Todd Chassee. Bottom, Todd and I after the race.
I ran the Riverbank race 5/12/18. The whole 25K. Much slower than my peak times, but near my lifetime average at 1:55 and some change. I was trying to keep a low profile since I was not sure if I could do it but received multiple texts before, during and after. Several of the nurses at the hospital were wearing Team Craig shirts. Well, got to do it now! From first step to my last, I ran with my portable ER doctor Todd Chassee. Every year that I have run this, no matter the pace, the last several miles just hurt my legs. Staci was driving Allison to a lacrosse games in Okemos. It rained and was cold there. I’ll take the 25K run, thank you very much.
Within the next week of my seizure, Connor asked if he could go to his friend’s house Zach. “Oh, can I go?” I said jokingly.
“I wish,” said Connor without a trace of irony. That may have been the nicest thing I heard from one of my kids in 2018. These moments always make me want to be nicer to my parents (at least a little bit).
I even started crying while at Connor’s swim practice as my dad was showing me pictures of a vacation last spring. It was a fishing trip for the boys. No, I don’t really like fishing, but I do like my only dad and my only son. We were scrolling through pictures of the beach at night, dolphins riding the waves of the boat, and hanging out with Joe Aufrey (whom my son still thinks of as the most knowledgeable on cars…maybe true). Joe can be full of stuff, but he knows a lot about cars. In hindsight, that was a fun trip.
Figure: A soccer game in Grand Haven always brings out Connor’s relatives. Upper left, Connor and Mia before a game at the MSA Fieldhouse.
While I am clearly Connor’s favorite, Staci is clearly Mia’s. Every once in a while, Mia asks for me, maybe one out of 10 times. Usually it is to wipe her rear end after defecating, but I treasure those moments of bonding. And she always asks to ride on my shoulders. She just stands in front of me and says, “shoulders.” It is my cue to lift her up. She is also playing soccer on Thursday evenings and Saturday at 12 PM. Finally I have a girl interested in soccer. Truth be told, I am not sure if we have the bandwidth to handle more than that. In addition to biking Connor to swim practice, it is also my parenting job to go to her soccer practice. We usually get picked up by one of her friend’s parents. I can’t say it isn’t fun watching her play, but I also get to hang out with the other soccer dads. Now that I know them a little better, it is a lot of fun.
Figure: Mia right where she likes to be. On the right, Mia buttering her own toast just like Grandma.
I realized I do not mention Queen Elizabeth that much anymore, or have her in individual photos. That is life as the middle child. Well, here you go. I do love jumping on the trampoline with her because she just flies up in the air when I bounce her. Seriously. She has the biggest delta from her individual bounces to when I bounce her. She has learned to time this perfectly, watching me go up and down, and landing a split second after I do. Up she goes.
I think Allison is okay. At least that is what I am hearing from her friend’s parents :). Maybe that is a self selecting group. Who would tell you that your kid is annoying and a pain to be around? They all love her company. She is actually quite funny, some crude, others more reportable on this blog. Without any examples, you can just trust me on this.
Figure: I decided to take a picture of Ella without anybody else.
To my mother, MK, who always seems to get what she wants without even trying. Pulling the levers behind the curtain without any of us really noticing. Happy Mother’s Day, Mom.
Staci and I are good. Every once in a while, we go on date nights (about once a month). Our favorite place to go is the Grove, and since we have limited nights out, we almost always find ourselves there. I am not going to say she is the best mom ever, but she is in the Top 10. She keeps our house afloat. I love you, Staci. Happy Mother’s Day.
Figure: At the Grove. Some guy literally in between us, but never figuratively.