Roswell vs Dent
2-5 years with good behavior. Boy did that send us for a loop. The ride was silent like a funeral procession. I don’t think Jenn or I could even conjure up a words for like 15 minutes.
I appreciated the candid response Dr. George gave us when asked. “These are average’s but give a good median of where you land. “ I wanted to know, but I didn’t.
Just as flooring as that news was the extra stuff. You know, there’s always the extra stuff.
Here is the list of extra stuff Doc George and his assistant laid on me:
No bike riding
Live under extreme quarantine until the end of May.
Wait 5-6 weeks for treatments.
Covid-19 must surpass for my treatments.
Need to be off steroids completely to start therapy.
Therapy could be good, could be bad.
My life is over. That’s the only thing I could think. WTF?
We left and as our travels brought us closer to my parents, I thought to myself, how do I tell my Mom and Dad that I’m probably gonna croak before they will? Losing a child is something no person should have to ever endure. I know. It puts you in a mindset that erases tolerance for bullshit and peoples petty issues. Basically forever. How could it all come to this? We broke all of the social rules. Tight hug’s and tears dripped on everyone. Who cared at this point. We did our best at “chin up” and “it’s going to be OK” gestures and words. Walking back to the car I felt like I just pulled the rug out from under them.
We lived with this shitty news for 6 days. 6 days of WTF? It really is the only thing that exemplifies the feeling sometimes. WTF? Loud! WTF, whispered, cried, screamed, pleaded and boldly stated like when you get cut off in traffic. WTF, like when………
The we went to visit Dr. Mechtlar at Dent. 6 days after I was basically handed a death sentence, Dr. Dent is telling me to live my life. Ride my bike, drive my car. He claimed ownership of my brain stem lesion and told me I’m not going anywhere anytime soon. I love this guy. He basically said that waiting for treatments was dumb and that if they couldn’t get any action at Roswell, he would dens me somewhere else.
So now I wait. Wait to see what my body does when the supply of steroids isn’t there anymore. As I ween off the roids in an attempt to get ready for immunotherapy treatments, side effects creep in. The hearing in my right ear fluctuates between 20% – 60% loss from day to day. It occasionally throws my balance off so I have to pay attention.
I played 9 holes of golf yesterday. Ok, let me clarify, I walked 9 holes at the golf course and hit the ball a lot. I definitely go my share of swings per dollar. It was good to be outside with the guys even though weather as not what you’d expect in May. Cold and rain.
Later in the evening, I had, what we think is my first real seizure. It started out as a chill after eating some frozen yogurt and turned into a full on 5 minute shaking fit where I had a hard time controlling my breathing. My body curled up in the recliner and my face twitched and winced. It had to be just as scary for Jenn as it was for me. She kept me focused and helped me regulate my breathing until I could calm down and stop shaking. It was pretty scary. I’m guessing this is just the start of this kind of crap. Thank goodness I have the support system to power me though.
May 8, 2020 Update: It was officially a seizure. I start anti-seizure med’s this afternoon and they took driving away for 6 months. So starts the progression.