On 6/28/17 at Northwestern, the preliminary MRI report was great. No change. Even did a little dance in the clinic. This was the Summer Scan — I did not have to get another scan until late August. I would do a couple triathlons, follow kids to swim meets, probably go up North somewhere. With the good news, I got my Vitamin P (pembro) infusion, and we went back home to our new normal life. Have a good summer! Well, Thursday, 6/29/17, was pretty good. So good, I don’t remember it.
I had a 1/2 day of clinic on that Friday. At 10 AM, my cell rang. The caller ID came up as “Northwestern.” I often get calls from Northwestern, but usually 5 days before my appointments: automated messages where I “Press 1” to confirm this appointment, “Press 2” to cancel. Seeing a call from Northwestern two days after a great appointment was not what I wanted to see. Providers do not call with more good news after great news. Brain cancer does not work that way. Something changed.
“Hello?” I said, hoping for an automated message, or the billing department.
“Hey. The finalized official report was different from what we discussed. It suggested a possible change. A new ditzel.”
The actual MRI report stated a “new 6 mm focus of enhancement in the paramedic left superior front gyrus.” Ditzel is easier.
“Basically, we just need to do an early follow-up scan. This could be treatment effect, or possibly progression.”
Our celebration at the appointment was premature. Something like this happened last summer. There was a scan that showed some changes which could have been growth or treatment effect (inflammation, scar, etc). However, I am kind of far out from radiation to really think it’s that. It could be from the pembro because, well, nobody really knows what pembro does in brain cancer. Maybe it causes ditzels.
“Okay, well, I need to see my next patient.” And that’s what I did. Took a breath, and called Reed City via Mednow, and did not tell anybody until after clinic. Too many questions, not enough answers. My nurse Jane stopped by my pod near the end of the day.
“Are you okay?”
“Really? You would tell me if anything changed?” Eventually.
Can’t sneak anything by Nurse Jane, but I tried. “Yes, of course.”
I had just powered through my last 4 patients without even thinking about the report. Since I did not know what it really meant, I was not ready to talk about it. I just wanted to go home.
I was basing a lot of big decisions on that Summer Scan. Do I do the Grand Haven Triathlon? Do I get a crown replaced? Should I get the vasectomy that was already scheduled? I cannot really have a ‘maybe crown’ or a ‘pseudovasectomy.’ I did decide to do the Grand Haven Triathlon about 48 hours before the race. Since it always worries Mom, I usually do not share triathlon news until a day or two before a race. However, we were going to stay at their house prior to the house, so I needed to give a 24 hour warning. Even I cannot show up with a car full of kids and a dog unexpectedly. They needed to stock up on fruit, cereal and soy milk. Her prayers were answered when the Grand Haven Triathlon was cancelled due to a big storm and debris on the course. Dang, shouldn’t have told her.
My crown has needed to be repaired for several months. I already delayed it, and then delayed it again. It does not bother me, it just does not have a great seal at the base. I can’t help but make medical (or dental) decisions based on two criteria: 1. Will it make me feel better. 2. Will it make me live longer?
“How long will my crown last?” I asked at my last appointment, thinking to myself, “How long will I last?” Since the dentist felt responsible for the poor seal, the crown will be replaced for free. I scheduled it (in a few weeks).
But I did have an appointment for a vasectomy. I did not really think about it since you need to schedule 6 weeks in advance. The night before, I read the instructions. Uh, shave where? As a former swimmer, I have shaved everything outside of a very small swim suit. The anatomy is pretty straightforward. I decided to watch a YouTube video of the procedure so I knew exactly what to shave. Not a good idea. I called the Spectrum Health Medical Group Urology at 11 PM to cancel, but I was shunted to the emergency line. Probably not a true emergency, so I hung up and set an alarm at 9:00 AM so I would not forget to call in the AM. I did not need the reminder. The upcoming weekend was too busy to carry around frozen peas with a Bill Bur comedy show Friday night and a two day swim meet in Holland.
“Do you want to reschedule now?” I’ll call you…
So, in summary, I have an ambiguous MRI. This means no triathlon, but not by my choice. My crown will be fixed, but not me.
Figure: We had an outdoor meet in Kalamazoo in June. Since it was sunny, and parents could be right on deck, I got a lot of great pics from my phone. Upper left, Queen Elizabeth shows off her backstroke start in the sun. Bottom left, Allison doing the 100 meter breaststroke. Upper right, Connor swimming the fly. Middle right, Allison swimming the fly. Bottom right, it was freezing on deck at 8 AM.
Otherwise, summer has been great. Mia learned how to bike without training wheels. Elizabeth bikes around the block multiple times with our neighbor, Claire. Connor bikes to swim practice at Calvin College. Allison comes out of her room at times to swim.
Since we had a weekend off from swimming in late June, we decided to go to the National Championship swim meet in Indianapolis. Since swimming is a true Olympic sport, it is essentially ignored the other 3 years. However, many of the Olympians swim at this meet for a chance to go to the World Championships in Budapest.
We were all excited to get on the road to make the Friday finals where our favorite swimmer Jacob Pebley would swim the 100 back. We love “Pebs” because he wears his emotions on his sleeve (or swim cap). He is a world class swimmer, but not quite good enough to be a household name. He was so happy to make the Olympic team in 2016 in the 200 meter back, he cried after the race in the water. Then, in the post-race interview, he talked about his mom’s influence, and cried again (she died several years ago). He is not the fastest backstroker from USA, and not many people know him because he ‘merely’ took 5th at the Olympics.
We hung out at the top of the stairs near the lockerrooms, and waited for the swimmers to exit IUPUI natatorium. With Mia out front, most every swimmer stopped for a picture and autograph. The swimmers know that once they take 10 steps out of the natatorium, if not named Michael Phelps, they would hardly be recognized. I think Jacob Pebley was most surprised to see a group of kids clamoring for his autograph. Mia, after getting a picture and autograph, came back shouting, “We got Pebs!”
The trip was perfect except some car issues. When the battery light came on as we drove to Indianapolis, everything else seemed fine, so we kept up our pace for the Friday finals. After two days, we moved our car out of the hotel lot with the battery light still on. 20 miles out of Indianapolis, 3.5 hours from home, driving through miles of cornfields, more lights started coming on. Soon, the gas gauge dropped to E and the miles per hour read zero. We coasted into McClure’s convenience store and the 2007 Honda Odyssey died. On Sunday, July 2nd. There was not an auto shop for miles, and not an open one anywhere. We had 5 kids (with a niece Grace), a dead minivan, and no place to fix our car or place to stay. There was plenty of soda and frozen treats at McClure convenience store, so the kids were content. We finally managed to get a rental car, and have our car towed back to Grand Rapids. Yes, that tripled the cost of the trip. I mean, first brain cancer, and then a dead car in Cicero, Indiana on July 4th weekend?
That’s my story. Here are some more pictures.
Figure: Hanging out at the top of the stairs, waiting for famous swimmers. Upper left, Jacob Pebley (“Pebs”). Upper middle, Lily King. Upper right, Kevin Cordes. Mia looks up to check this tall guy out. Lower left, Rowdy Gaines. Lower right, we looked homeless when the Odyssey broke down north of Indianapolis except for the Vera Bradley bags, swim shirts, and iPads.
Figure: Left, Connor and Charlie celebrate state cuts in the 400 free. Middle left, Queen Elizabeth does not need to kiss this frog, she is already royalty. Middle right, Mia has something to tell Deanne. Far right, after mastering the bike, why not start driving lessons?