Setting aside my day with my brother on Tuesday for four hours. I'll just start with it was great walking and exercise, lunch at a diner that was great, and just 4 hours of talking about his experience with people who have had what I now have and what we felt was good to cover. Personal. Religion. History and Podcasts. Sports in depth. But mostly about my situation and logical outcome which will be reached at some point. All really nice to have and will share some another time.
My visit to Memorial Sloan Kettering on 53rd St in NYC was expected to just be a part of one conversation and possibly 2 others with one at Duke and one in Florida. After four hours, we made a decision and I will explain a bit.
First, my current group will handle radiation and chemo here near the house. That was set - and 2 weeks before starting. Now the radiation will continue here, but the chemo we learned and signed for at MSK is slightly different and will involve a new test with several options and groups and some information completion. It's a new trial and the doctor said they could collect my data and health and potentially (slim possible rejection) sign me up. As of now - high probability to join and take part. Mostly needing to see results and my ability to share, speak and keep notes. So it's engaging. That does need a level of intelligence they tested (I scored really high with their process and engagement) and a willingness to engage. I was all for trying things, which they smiled about. My current doctor, who has several potential tests but several weeks off, will be sidelined while I join this. Both groups work separately but share information and conversation as necessary. This is a learning chance!
Second, doctor and nurse were blatantly open. What is the reality. My best shot for now - I have a non-Methylated Glio Blastoma which is one of several different kinds of the same issue. Mine is very specific with a lot of downside potential over time when it comes to opportunity. They were very open to "enjoy life and get the most out of what you want, even if it includes cutting out of testing or trials." They support travel, learning, having fun. "Enjoy your life and get the best you can." I said I will, but I want to learn more, too and potentially help others. They smiled and loved my engagement and willingness.
Third, health and intelligence top notch! Nurse kept testing several times. No issues. Now approved to drive if I want. She recommended sports and gym again. Just got to let the surgical swelling on the left brain continue to decline which is slowly happening but maybe 2 more weeks. It doesn't hurt much. Just swollen and feels odd.
Fourth, GREAT BURGER at PJ Clarke's in NYC. A CLASSIC. Always has been. I don't know why but man that was so darn tasty. Food is still REALLY delicious.
Fifth, had my new mask for radiation set today at the hospital. After six weeks I get to keep it - kind've new artistic item. See attached!. It's a pin which radiates different parts of the head over 20-30 min each day starting 3/1.
Today, just lots of sleepiness. Got 6 hours last night. Got 3 hours today. Will probably get another hour before bed. LOL. No idea why just really dragging suddenly.
Still having lots of texts and phone calls, though - so all 100% positive and looking for fun.
For anyone not interested. Let me start with "I'm sorry if you don't want to read this." I know everyone varies on how these stories develop and take place. It can be boring or time consuming and even annoying. So my apology if it is for you in some way. That said, I'm finding it all really interesting to talk. Also, oddly, suddenly boring from moment to moment. As we spoke to the doctor, everything was great and suddenly he and the nurse began telling my wife and one son some information regarding the test and after 10 minutes he looked at me and asked if I was ok. I said "Yes, but now that I know I get to engage this soon, the data is boring me. I'll leave that to them and they can handle all that. Me? I want to get started and I don't care." He laughed and said "lots of ways to approach this."
