Election Day 2016 was a great day at the Grand Rapids Alguire house, but that had nothing to do with the results. We all had absentee voted, so our part was over before the day started. We got up at 4:45 AM so Staci could shower before leaving the house at 5:30 AM. I tried to focus on love even though I was awakened 15 minutes earlier than need be to get myself ready. Forgiveness is easier if I imagined her in the shower, but before 5 AM, I’ve learned the interest is not mutual. The kids were all in a deep sleep when we left the house. Staci’s mom, Gail, was employed as our babysitter and chauffeur for school and swim practice. Her payment is an unfiltered experience with our kids.
Figure: Left, Gail reads to Ella and Mia. Middle, Mia after absentee voting twice. Right, Halloween at Breton Elementary. Peppa Pig visits Missy Franklin’s classroom.
We met some of the Grand Haven Alguires at the Saugutuck exit Shell station at 6:10 AM per protocol. We hopped in the car of my primary oncologist, and rode with my PCP and mom.
We’ve trained the staff at Northwestern to give a quick review of my MRI before any small talk. No need for pleasantries or a neurological examination if you have MRI results. I’ll do the same. The neurooncology fellow walked in and said, “your MRI looks unchanged.” That’s good. I get another 6 – 9 weeks with Plan A.
Once the MRI results were shared, we threw a mini baby shower for my neurooncologist Dr. Kumthekar. She is expecting her second son sometime soon, so my mom put her knitting skills to work producing a whole line of baby clothes including a sweater, blanket, and matching hats. My primary oncologist baked several things as well. Mia misunderstood the plans for the baby shower, and thought it was “dad’s baby.” Ahh, no, but that would certainly liven up the blog!
On a previous visit, I actually had a symptom to report for the first time in months. I was correct to be concerned when I had a partial seizure (brain cancer) and unilateral lower extremity edema after cancer surgery (blood clot). I wanted to tell my doctor about the sores in my mouth.
“I don’t see anything,” she said.
“Those taste buds?” she inquired.
Okay, that’s the last time I report anything minor. She said maybe some mild mucositits that couldn’t really be seen well.
And then I imagined the note she would generate: “Craig Alguire reports sores in his mouth…on exam, no objective findings could be made.”
Figure: Top Left, my last MRI with a comparison to previous. We have decided the white smudge is just treatment effect. This appeared stable. Top Right, Mia is trying to make sense of the election, but she might not find answers here (she only reads the cartoons, anyway). Bottom, Uncle John with Connor and Mia at the O.K. Red Conference swim meet.
I know a handful of GBM patients these days. It was a week of mixed emotions. David Hutchings, a Facebook friend and fellow runner with GBM in England, had progression on his last MRI and is trying to tolerate second line therapy. On Monday, we attended a memorial service for Benny Boes. One of his friends gave the most personal and funny speech I have ever heard at a memorial. If his only impact in life was on that one friend, he would have brought a net positive light into this world. On Election Day, Chris Whalen told me he had another stable MRI. His doctors at Spectrum were giving high fives to each other.
I was driving Connor to Futsal (indoor soccer) 11/1/16, the day after a Benny died of Glioblastoma Multiforme. Benny Boes was diagnosed over after Spring Break in 2016. I did not know him until we shared this common diagnosis. Even before his surgery, he had significant neurological deficits with left sided weakness. That’s just how this presents, either acutely with a seizure, progressive headaches, or a progressive neurological deficit. Staci called me to tell me, and the phone went through the car speakers via Bluetooth. “Did you see Benny died?” she asked before I could swipe to phone only.
“Who is benny?” asked Connor.
So I debated quickly about what to say about someone dying of GBM. So I just played it straight.
“He is a friend that had brain cancer and just died.”
Without missing a beat, Connor asked, “Does that worry you?” What? I was thinking. Ahh, yes, but not anymore than GBM already worried me. And how come an 8 year old is asking that?
“Does it worry you?” I asked back.
“That’s the second time I was worried.”
“When was the first?”
“Bob.” That would be Bob Constant, Staci’s uncle, who died 10/5/16 from pancreatic cancer.
We hadn’t really talked about Bob’s death for several weeks, so it was a surprise to me that he brought it up. We had not even talked about my own cancer diagnosis directly in a while. I didn’t want to have uncertainty weigh on his mind. We are still on Plan A, I am doing fine, so I did not get the impression that he was worried. I find it difficult to find that space between honesty and reassurance. So, instead we just listened to the audiobook version of Harry Potter and the Chamber of Secrets for the rest of the drive. Sometimes, there is just not much to say.