I rode to Chicago on January 10th with just my parents for the first pembro infusion of 2017. They are always invited to the less exciting trips. Translation: no MRI and nobody else offered to drive. Despite riding in my GMC Acadia for 3 hours with them, everything was cool. I had no symptoms, and knew my labs were going to be fine. I was just rolling into Chicago to get my infusion. My mom checked the clock nervously. She needed to get back to Grand Haven to pick up Genevieve at Mary A. White elementary school. I am no longer the focus even on these trips. That’s fine.
My pulse at this appointment was 47 bpm. My medical assistant raised her eyebrows at that number.
“Do you exercise?”
“He could’ve been in the Olympics,” my mom told her. That is one possible explanation for a low pulse in this 5’9, 150 lb man. I just needed to find the right sport.
“He had to study too much,” she continued.
If only that were true. Do you think I would sit in the library at MSU studying for the MCAT on Friday nights if the alternative was preparation for the Olympics? I knew my limitations, but apparently my mom did not. I think that is why they seem so confident I am going to ‘beat’ GBM. We all have alternative facts about our kids. There is just a biological blindspot. I prefer denial. Beat what? I’m just here for my performance enhancing pembro.
The following day, Allison called me at 3:00 PM while I was in clinic with a patient. This is unusual, since I have only seen her use her ‘phone’ for Instagram, Snapchat, and texting. I was with an elderly African American woman and her daughter with difficult to control hypertension. She took her meds as prescribed when her blood pressure was high, titrating salt intake and meds to her blood pressure (not the ideal regimen). While I was trying to figure out what to say, my Garmin watch started buzzing. I was getting a call from Allison.
“Excuse me, got to take this. It’s my daughter.”
She smiled. Actually, see seemed to get a kick out of it. “Got to take care of family,” she said with a smile. Her daughter was with her at her appointment.
“Where are you, Dad?”
“Clinic. Everything okay?”
“Call Mom, she is picking you up. I am in a patient room right now.”
It reminded me that I never answer my phone in clinic except apparently for Allison. It also reminded me that I can call my PCP any time, and he almost always picks up. Even if in clinic. Or out to dinner. Probably even at a movie. I can’t say the reverse is true. As we children ignore calls from our parents, our kids get revenge by ignoring us. We always answer the younger generation calls. I even answered a FaceTime from Connor during clinic. You are just happy they are interested. And you drive them to Chicago if nobody else will.
The pembro trial is designed for 2 years, and then it just ends. I am removed from the trial if I have recurrence / progression. That would either lead to repeat surgery (if still resectable) and a different therapy. With 5 MRI scans planned (every 9 weeks) prior to the conclusion of the trial in December, that still seems like a long time. I have been asked multiple times what happens after the two year trial. Ahh, this is what happens: I celebrate. Only a small minority of GBM patients make it 2 years without recurrence. We could either continue pembrolizumab off label, take something else, or nothing (watchful waiting). I hope we will need to make that decision.
We were recently at the Spectrum Cardiology holiday party. A Physicians’ Assistant told me “I don’t really read your blog, anymore.” That’s fine, Matt Brower. I guess this is a safe place to call you out ;). Being boring and obscure is all part of my 10 year goal. I’ve been back to work for over a year at this point, not missing a day since I’ve returned. I keep thinking I am going to work a little bit more, and then I think a little bit more. Why change what works? I have been back so long, the office is starting to take down the Team Craig signs and bulletin boards. I also had a Team Craig t-shirt that was hung up for people to sign. Those are now in my basement, and those bulletin boards are celebrating Heart Month.
Figure: Left, my signed T shirt from work, and a sign that was pulled down to make room for other announcements. I think I surprised Pod C doing this well into 2017. Middle right, putting the New England Journal of Medicine aside for Curious George. Right, the only January birthday around here, Mary Violet turned 14.
I just asked Queen Elizabeth if she would go to the Sweet Heart Dance with me on February 11, and she said YES! So excited. My plan is to take my girl to Russ’ again, show her how to spoil herself with a perch dinner, two salads, and a chocolate shake. Dreams do come true, Ella.
The closest I came to crying (read, I was crying) recently was reviewing pictures from the 2016 Daddy Daughter Dance, specifically the selfie I took with Ella and me as we were drinking a milkshake. I was still bald, and she was just a little smaller. My Olympic Gold Medal is to make the age of 50. That would get Ella to 17, with even Connor and Allison already in college. I just mourn for the missed opportunity to answer the phone when she calls (when she needs something), or just inadvertently dials my number. “Giving” a daughter away at a wedding is a little old fashioned of a goal for me. I want to see them step out a little bit into the world, but have a big safety net for them at home.
Staci told me she thinks I am pretty normal, just more defensive than I was before this whole mess. She says I just don’t take criticism as well. Well, that’s bullshit, and she knows it! And here I thought we had something. For example, we used to give each other the best Christmas gifts: we did not exchange gifts. She broke that promise, and I felt betrayed as I accepted her gift. She said it was fine I did not get her anything. However, a few days later, I got an email from her with gift ideas for her for next time. The Nerve!
Segue to a more serious ending, I have seen people do very well with GBM and some not as well. A couple were diagnosed after me, and already have died or are in hospice care. Others were diagnosed before me, and are still doing okay. Still, the most difficult part is considering leaving a life unfinished. I have always been pretty lucky, and even with this, and I couldn’t have asked for a better 15 months. But the pain of my inevitable early absence in my home is real. One of my best friends told me while running around the lake that there is pain because I have been so fortunate. Probably true and still bittersweet. No matter what happens, I got the best half of Staci. We had our first date, dance and kiss in high school. We went to college together, although not intentionally. She followed me to Ann Arbor, started a career, and we got married. We bought a condo, and then bought our first (and current) house with 3 kids in Ann Arbor and 1 extra in Grand Rapids. We have 30 years of accumulated parent-years (all of our kids ages added up). You can only have one love of your life. She may find love again, but I own the best real estate in her heart. And I do not plan on moving out anytime soon.
Figure: Upper left, New Year’s Eve selfie. Middle left, Allison must have seen the New Year’s kiss through the phone. Lower left, princess Anna and an unnamed snow princess. Upper right, Connor in January in Michigan. Lower right, trying to teach Allison the backstroke about 11 years ago. I was looking for older pictures of Staci and me, but apparently our digital photos only go back to Allison.