I had another MRI on April 11, 2018 at Northwestern.  I got the usual news:  probably ‘treatment effect,’ but cannot rule out some growth of the brain tumor.  

“Let’s repeat an MRI in 6 weeks,” said Dr. Kumthekar.   

I should just schedule these every 4 – 6 weeks and cancel if not needed.

I will not have tumor progression for lack of trying, but I am not sure what ‘lack of trying’ means in the setting GBM.  Same goes for ‘putting up a good fight.’  I can only take my medications as scheduled with Lamictal (anti-seizure and happy drug) and Vitamin P infusion every three weeks.  A recent trial in lung cancer patients showed treatment with pembro was clearly superior to treatment without it.  That sounds good to me.  Unfortunately, it only works works for some people in some cancers.  As far as I know, I drove to Chicago every 3 weeks for 108+ weeks for something that is equivalent to the other Vitamin P (placebo).  Placebos are generally nothing more effective than sugar pills.  However, I am not going to diminish the effects of Placebo on disease and outcomes.  About 35% of patients report a ‘response’ and / or ‘side effects’ to placebo.  If I just believe in Pembro, maybe it will help? 

GBM is so bad, researchers are just throwing stuff at it and seeing what sticks.  As I always like to think to myself, ‘there are a lot of new and exciting treatment options that haven’t been proven ineffective yet!’

So, I exercise to burn off my worries.  My longest run is still in the single digits due to a left quad injury.  I am in pretty good shape, but probably won’t run 15.5 consecutive miles until race day.   Sitting still is the most bothersome since I occasionally get some myoclonic jerks (random arm or leg movements) since my last surgery.  If I’m active, this just does not happen.  I ran 8 miles prior to my AM clinic on April 20th without a problem.  I had so many myoclonic jerks starting at 11 o’clock or so, I thought I was going to have a another generalized seizure.  This lead to a panic attack, and I was sort of shivering all over.  One of our NPs, Tania Pratt, sat by me until Staci arrived.  She suggested Staci should bring my Ativan.  Hum…good idea.  After some Ativan (since I haven’t carried it around for a while), we got something to eat, and I took a nap.  Sounds like a pretty good remedy for most ailments in life.

Since my seizure 12/21/17, I have been biking most places around town.  Once it gets warmer, I may even try to bike to work (to the hospital through town, not to the office down the Beltline).   Biking gives me a little more independence.  I will also bike to D+W to get my craft beer, and bike home.  I may get a few funny looks as a pack just beer into my backpack, but whatever.  I won’t judge you if you don’t judge me.

Figure:  Left, my lovely chef and chief in the kitchen.  Good thing I was assigned something easy on our Whole Food Plant Based culinary class.  Middle, my pembro partner locally.  Right, bumped into Elaine Milnes at the infusion center.

Here’s what happened at 1429 Ridgewood since my last blog.  We spent two weekends in a row at swim meets: the 12 and under state meet at Zeeland and the 13-14 and open state meet at Eastern Michigan.  Zeeland was a little small of a venue for a 12 and under state meet, and the Fire Marshal stopped by to stop the meet for over an hour as he checked things out.  And Eastern Michigan, the  pool, well, is just a complete dive (no pun intended).  Of course, at EMU, we needed to stay in a hotel.  The exercise room Rules of Use I liked the last line: Do Not Over Exercise.  Discontinue Use at the First Signs of Stress.  Well, don’t tell the swimmers at the state meet!

Figure: Upper left, one of several EGRA “B” relays that made the podium.  Upper right, Connor’s Medley relay that finished Top 16 (and didn’t DQ!).  Below, good advice except for the swimmers at state.

Allison and Connor had great swim meets, although Allison developed some respiratory ailment by the end of the meet.  All of Allison’s “B” relays placed somewhere between 7th and 9th where the top 8 ‘podium.’  I think she was proud of that.  Connor has the perfect birthday for swimming, and will probably take multiple podiums in his individual events next year (not to put any pressure on the kid…don’t tell him I said this).

Queen Elizabeth pretended to be Eleanor Roosevelt for a school project on great historical figures.  The good thing about having parents that are highly functional hoarders includes they have a costume for everything, including Eleanor Roosevelt.  I also took the Queen to the Sweetheart dance again this year with her little sister, Mia.  Once we got to the dance, I barely saw either of them.  I sort of teased Elizabeth about not dancing with me near the end of the dance, and she apologized to me later after reading to her ind bed.  Oh girl, that is okay.  I just hung out with a bunch of other dumped dads.  

Mia is playing soccer for the Little Rascals and could not be more excited.  Everyday she asks when her next practice or game will be (practice is always Thursday night, games always Saturday if she asks you).

Figure: Far left, Mia before her first practice.  Middle left, warming up with Papa before her first game.  Middle right, introducing Eleanor Roosevelt.  Far right, my two dates for Sweetheart Dance.

Oh, and we went to Bradenton Beach (island off Tampa) for Spring Break with my two sisters, two brother in laws, parents, and everybody’s kids.  We all stayed in the same house.  Despite 18 people staying under one roof, we are all still talking.  That is probably the biggest accomplishment of the week.  The Cousins, as they refer to themselves, had a great time, but I think they would have a great time wherever they were together.  They are divided up into the Bigs (Anna, Kathryn, and MV), Middles (Allison, Grace, and Rosie), Littles (Gen, Ella, and Mia).  Connor is just the boy.

Figure:  Upper Left, Anna holding Mia while jumping off the pier.  Lower left, the safest place in the ocean.  Upper right, watching Manatees in the rehab center.  Lower right, the safest place on land.

Another Figure from Bradenton:  Far left, My parents and me.  Middle left, Grandpa showing the Connor the proper technique for sharpening knives (much to the horror of MK).  Middle right, we were very good customers at the local putt putt.    Far right, Alli shows her allegiance before flying out of Chicago.

 

I am grateful for every day I am still alive, but greedy because I want more.  I am still exercising, working, and just hanging out with my family and friends with minimal symptoms.   I’m trying to end the family’s obsession with The Greatest Showman, but not very successful as I listen to the soundtrack while typing this.  Lead by example, Craig.  Can’t get much better than that 2.5 years after my diagnosis.