Some progress for a mad scientist - 9/14-15/25

 Yesterday was a calm day. My wife, Yas, and son, Ryan,  came to visit from 11-2. We had a nice time chatting and they got to watch as the EEG technician attached 20 electrodes to my head so they could monitor my brainwaves for 24 hours to look for any seizure activity.  This is my mad scientist look!

I had a possible focal seizure in the ER on Saturday morning (9/13) when my left arm jerked around uncontrollably for 2-3 minutes and then went completely limp and unresponsive.  I regained some control of it over the next hour.  They are recording my EEGs to look for any seizure indicators and to record the data if I have another such incident, which I haven't, thank goodness.

My daughter, Caitlin, stopped by to chat in the afternoon and we did some EEG experiments. She had me do various mental activities and tried to see if there was a change in the EEG data. The plots show the electrical voltage detected at each of the 20+ electrodes.  Below is the experiment where I counted prime numbers in my head, as Gaal Dornick does in the Foundation TV series. Caitlin could see some of the electrodes spiking while I counted: 2,3,5,7,11,13,17,19,23,29,31,37,...!  So cool.

I lost strength in my left arm and leg in yesterday afternoon (Boo), but after my evening steroid shot, it came back (Yay). Today, I'll meet with my full neuro-oncology team and they'll come up with a plan based on my recent history. 

My step daughter Shaye will be visiting today until Thursday after her Tuba Skinny New England tour, then will fly home to New Orleans. She was here at the start of her tour for my first hospital visit a few weeks ago.

I'm proud of my wife and children for being so strong and positive in the face of so many unexpected twists and turns in this complex disease. We are all occasionally overcome with natural worry and fear about the future, but it's not something we dwell upon, and that makes it so much easier to face these challenges. I'm not in any immediate danger of death, but I have a long road ahead of me, with many likely twists and turns in the future. I'm thankful I don't have to face this cancer alone and that my family and I can take it one day at a time, and appreciate each day for the gift it is.

We will all die someday, and in the end our legacy is the impact we've had on the world, especially the ones we've loved and who have loved us. Although my mom died unexpectedly 32 years ago, just before Yas and I got married, I often think of her and have conversations with her memory, as I know how she saw the world and can guess about how she would react to the things happening in my life.  In that way, she is always with me to give me comfort and advice.

I hope that when I die, ideally a few decades in the future, that my family and friends will still have access to comfort and advice from their memories of me.  This is why I always try to be honest and kind and I strive to reduce suffering and spread joy, love, and compassion every day. Even, if I'm not completely successful, at least I have no regrets as I know I've tried my best, and I hope my thoughts and actions will be helpful now and also in the future when my loved ones think of me and my everlasting, unconditional  love for them. Our lives make an eternal impact on the world that can never be erased, and I want that impact to be as positive as possible.