First the facts: I am doing fine. I had an MRI on February 21st, and since this blog took so long to write, another one April 26th. To complete my 2 year trial, I need to have satisfactory results on MRIs June 28th, August 28th, and November 1st. After that, who knows what I’ll do for treatment. As I’ve said before, that could be the best difficult decision I’ll need to make in over 2 years.
The scans are not really a week of build up, and then sudden relief. I have a week of confronting I have this diagnosis with the scan somewhere in the middle. It is not the immediate relief you would expect. Once you consider all the possibilities the MRI scan could bring (stable, repeat surgery, different chemo, or unresectable), it takes a while to step back from that abyss. I need to slowly get back into my normal routine afterward, back on Option A. I cannot think or reason my way back. I just need to restart my daily routine: playing basketball with the Connor, watching Allison play Lacrosse, building Magna tile towers with Mia, or just hanging out with Queen Elizabeth. Exercise, work, say goodnight to my wife, and start all over the next day.
Staci reminded me in just over 2 years, we will have one in high school, middle school, and two in elementary school.
“They are growing up so fast,” she said, just like every other parent.
“Good. And if I could make it go faster, I would.” I could watch their lives at 2x, maybe even 3x speed and be content. Enjoy this time? Of course, but let’s keep time rolling forward. I’m racing against a timer of uncertain duration, and trying to push them along as far as I can.
The last few months have been a series of events that start to feel like a routine post Glioblastoma Multiforme diagnosis. I signed up for a 39 month lease for another GMC Acadia with a family discount from my Aunt Joyce. Why make any changes at this point? The salesman, Kenny, probably thought I was pretty morbid (or joking) when I asked if I died before the lease ended, what would happen to the car? (my survivors could bring it in). If I can’t drive due to a seizure, well, I can just go out to the car and listen to the Bose speaker system in the driveway. When Kenny said he could get me satellite radio for free for the first 3 months, I was sold. You just need to jump on that SiriusXM deal once the manager okays it from the back room.
Let’s see, I went to the Daddy Daughter dance with Queen Elizabeth (again). Russ’ for the perch dinner and milkshakes. One last (hopefully) bat cruised through the house for our third catch and release, this time down the road a bit at an undisclosed location. We caught this one in Allison’s room. She ran to our room, and I ran to hers after shutting all the doors. Another Grand Rapids Griffins’ game where Connor scrambled for a puck. It was also Star Wars night. If you want to people watch, that is an event. We also watched a few future Spartans at the MHSAA class A finals.
We mixed it up a bit for Spring Break going to Los Angeles (#LA2017). Our motivation to go that far west was to see Mia and Tai’s 6 month old twins, nicknamed Iced Lemonade and Owl by Mia. Yeah, I don’t know either, but their real names are Liam and Eila.
We went to a few surrounding tourist sites, but mostly the kids liked the pool (and especially hot tub) at the house we rented a Studio City. The three older ones gave Mia swimming lessons in the colder big pool, occasionally needing to jump in and save her (after everyone watched her struggle longer than any lifeguard would). You would think they had enough pool time in Michigan.
After my last MRI, we did a boys trip to Florida. The boys include my PCP, Connor, my dad’s friend Joe, and me.
And finally, I am running the River Bank run this Saturday, May 13. It will not be my fastest, but it will not be my slowest, either. My primary target is to be under 2 hours, maybe faster if I feel good (I’ll make it hurt if necessary to get under 2). But my primary goal is to enjoy a low key race. Not making a big deal about it like last year. Just parking the car in the Spectrum Health hospital lot and walking to the starting line like old times.
Since I have been lazy, below are a series of pictures. I’ll call it photojournalism or a scrapbook of our lives since the last blog, but mainly I just do not want to write too much.
Figure 1: Left, Queen Elizabeth picks out my tie. Left middle, Mia joins the picture. Right middle, a difficult selfie. Right, canned photo at the dance.
Figure 2: Upper left, kids doing laps at NW Lurie Cancer center. They could not go back to the infusion room, but they got their steps in. Upper middle, family trip to NW for MRI. Upper right, finishing up some Epic during infusions. Lower left, reviewing my brain with Priya Kumthekar. Lower right, Mia negotiating the number of stickers she can take with phlebotomist Gloria at the Lemmon-Holton Cancer Center.
Figure 3: Upper left, Connor’s basketball team. Middle left, surrounding a famous long-distance swimmer from Grand Haven, Rosie Springer. Bottom left, Allison finishing the 100 fly at the J.O. meet. Upper right, Connor happy to medal in the 100 free at the same meet. Bottom right, Connor’s relay (Luke, Charlie, Connor and Gray).
Figure 4: I seem to have a lot of Connor. Upper left, Griffins Star Wars night and snagging a puck. Upper right, figuring out how to blow dry hair. Bottom left, gymnastics prodigy. Bottom right: Sparty (and Connor, again).
Figure Malibu: Hold right there. Never mind. Right, a family selfie away from the water.
Figure Hollywood: Staci found her fav from high school. Ella tries to keep her dress down. Connor being Connor. Right, the kids expressing their first amendment rights and my only hint of politics in this blog. Who would utilize their own kids to make some statement?
Video: Kids teach Mia to swim.
Figure Liam and Eila: Various combinations of Mia, Tai, our kids and theirs. Allison was exhausted from babysitting and the transition to Pacific Time Zone.
Figure: Kids getting along. Walking around UCLA’s campus. Middle right, traveling with kids has some perks. Right, excited to visit American Girl Store between LA and infusion.
Figure: upper left, instead of naps, we build towers nowadays. Upper right, I’ve learned that once you turn 40, looking up in pictures makes you look younger. Thanks for the tip, Courtney, and Happy Bday! Bottom, my first pick up and drop off with the new car.
Figure Florida Fishing Trip: Everglades, alligators, fishing trips with sharks, with dolphins following us home. Finally, some old neighbors.
Miscellaneous: Upper right, KK’s bday party with her cousins. Upper right, Magna tile tower. Connor at the MHSAA state finals between GR Christian and Clarkston, cheering for future Spartans. Below that, walking up Boyne Mt. at the Michigan Society of Echo conference with Mr. Rogers in his cardigan. Below, giving the definitive lecture on aortic insufficiency all in 15 minutes.
And a last one for anybody still sticking around. I’m sure this girl has…