River Bank Announcement: The 39th Annual 5/3rd River Bank Race is May 14, 2016. There are several races that day including the 5K, 10K, and 25K. You can even do a 5K walk or a 25K relay. With that flexibility, excuses are limited. My friends (okay, Courtney) have been kind enough to sell imwithcraig gear for this event. All the money raised from this will be donated to the Northwestern Brain Tumor Institute. This is where I am getting my experimental immunotherapy pembrolizumab (Pembro or vitamin P for short).
Just as important as the race (or walk), we are arranging a post race party in the parking lot of Lifestyle Kitchen Studio. This is located at 222 Fulton Street, less than a mile from the finish line of the River Bank. That said, that mile is mostly uphill, and may be a devastating climb after a good race. My advice is to run straight through the finish without stopping and head for Fulton. There will be some form of food and electrolyte replacement with a Michigan beer (to be determined). Whether you run the race, just go down to watch some friends, or want to just crash the after party, we will have more details in the future. Restaurants are generally packed after the race, but this will be an open venue with no reservations needed. If you are reading this, this is your ‘save the date.’ If the weather does not cooperate, then you will either be wet or cold.
Figure: I ran the Spectrum Irish Jig March 19, 2016. It was a reality check since my 5k time was actually slower than my goal race pace for the 25k. That’s okay, better learn that now than at the first mile marker, but then I thought: 1. It was cold 2. I ran a lot that week 3. I was carrying an iPhone 6 4. I wore a baggy warm-up jacket (not pictured). Okay, we are back on track with my goal time.
I am in a maintenance phase at this point with Q3 week trips to Northwestern for my Vitamin P infusion and pulse therapy with oral Temodar. We are such regulars up and down the Illinois toll road, I bought an EZPass for the car. The Temodar is on a 28 day cycle with 23 days of nothing followed by 5 days of actual therapy. It is kind of like birth control in reverse dosing — too bad it’s not nearly as effective. Speaking of birth control, the Temodar insert recommends two methods of birth control while taking this chemo. Good thing I took Sex Ed in the 1990s from Mrs. Nederman, otherwise I might not have been able to name two forms with the more recent push for abstinence ‘education.’ Talk of me getting a vasectomy died down around this house 10/29/2015. That was supposed to be my first doctor’s appointment in 30 years. Can you play the cancer card with your wife? I really haven’t needed to. That may be an awkward play to type for the blog. We will figure it out. 4 kids are plenty.
Figure: Left, I’m glad the weather is getting better so Connor can play our neighbor Clair in basketball outside (right).
I took 140 mg daily of Temodar for 6 weeks during radiation. My first 5 day pulse was at 280 mg daily. I vomited a bit the morning after day 1, but carried on, and really felt fine the next 4 days. Labs were minimally affected. Since I ‘tolerated’ that dose so well, it was titrated up to 360 mg daily for 5 days for the second pulse. Whoa. Now that is the chemotherapy experience I expected. After the first night, I would look at those pills sitting in the pillbox and think ‘poison’ with a Pavlovian response of nausea and dread even prior to taking it. The first morning I vomited several times, but then just had a general sense of unease for several days. Day 1, I still managed to have breakfast after some Zofran, grabbed a coffee and made my way to pool. The worst symptoms resolved remarkably fast. I swam lightly (good thing we were working on breaststroke, so nobody could tell). I made it through my half day of clinic, and then Jeff Decker reminded me we had a coffee date. I cancelled and landed on the couch for the afternoon.
“I sometimes forget that you are sick since you’ve been doing so well,” my junior partner said. We will take a raincheck on that coffee.
To prevent the nausea and vomiting, I got into a routine of waking up between 3 – 4 AM, taking a prophylactic Zofran, and going back to bed. Near the end of the week, I made it through a couple of sessions at the 12 and under state swim meet, but had my head down on Staci’s lap for part of it. I was an internal chemistry of competing caffeine and chemotherapy.
It is controversial whether Temodar is even efficacious with my MGMT mutation status. I’ve never really felt any anger with this diagnosis. Not really sure whom to direct it at. If you got a name, message me privately. But Temodar may be the punching bag. If that medication causes symptoms, and still doesn’t work, I have a target for anger.
Figure: Left: Allison and Ella in the Breton Downs production of Alice in Wonderland. Picture carefully cropped to make them look like stars. Middle, the two stars with their biggest fan, Maria. Right, Queen Elizabeth and some bald guy.
About 5 months out, and I can concentrate depression into a couple of minutes a week. Actually, I do not think depression is the right diagnosis: it is just sadness. I do not feel helpless like clinical depression, and it resolves after a few minutes. I occasionally drop my kids off at school nowadays, the older three to Breton Downs. For some reason, this is frequently a trigger. First, it’s Allison to her safety post at 7:55 (baraely on time). Then, Connor and Ella fight over the passenger seat for a few minutes until 8:05 AM when they race to their doors to line up first. Maybe it’s the clear passing of time school represents: kindergarten, 1st grade, 2nd grade, etc. And I start to miss them as they walk to their respective classes, and wonder why I was so frustrated when Queen Elizabeth and Connor fought for position in the passenger seat. It hurts, but it feels good to hurt like that, too. I am a 5 month survivor in a disease that has an average survival of 15 – 16 months. That is mind boggling, especially since I feel so well (when not taking Temodar). I know this data includes all comers, and is prior to newer therapies, but these are just the facts on the ground.
The rest of the week, I am able to maintain some form of denial. It is not true denial, because I am always very aware of the thing that is being denied. I am just denying the emotional resonance of the whole thing. This allows me to work, eat, play, and be crushed by an early MSU loss in the NCAA tournament, but then feel better after Tom Izzo praises his senior class in the post-game press conference. It doesn’t matter, but it does (and why did Middle Tennessee go off and lose to Syracuse by 25?). After I was initially diagnosed, I became a bit detached from current events, culture, and sports for a few weeks. I let a favorite magazine subscription lapse. It just did not seem important anymore. But then what? I need some denial to stay engaged in the world. So, I’m training to run some arbitrary distance on May 14th, and will try to achieve some arbitrary time, and grimace at some political figures, and celebrate certain college careers that ended in disappointment for the Big Ten school that just happened to be closest to me growing up. It matters. Here’s to several blog posts titled “Maintenance” without much to report besides pictures and videos of kids.
Figure: Mia is happy to have her dog back after the Walters watched her once again. This time, our excuse was the 12 and under state meet. Allison’s state medley relay on the right with Olivia (backstroke), Celia (free), and Abby (breaststroke).
Video: Connor scores in a shoot out for the River City Rascals.
Video: And another video for the swimming superfan. After not swimming for 2 weeks, a 9-10 relay spot opened up, so Connor (age 7) ‘qualified’ for state. He was so pumped, and swam more during the taper week than he had ever done before. Allison needs to work like crazy to just have a chance for a relay spot due to the sheer number of fast girls; Connor just needs to wait by the phone.