Maggie's FarmWe are a commune of inquiring, skeptical, politically centrist, capitalist, anglophile, traditionalist New England Yankee humans, humanoids, and animals with many interests beyond and above politics. Each of us has had a high-school education (or GED), but all had ADD so didn't pay attention very well, especially the dogs. Each one of us does "try my best to be just like I am," and none of us enjoys working for others, including for Maggie, from whom we receive neither a nickel nor a dime. Freedom from nags, cranks, government, do-gooders, control-freaks and idiots is all that we ask for. |
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Thursday, February 22. 2024New Information From Yesterday and TodaySetting 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.
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Thank you for your posts. I've walked with a wife through these events. I pray for you each morning. You have added a lot to my life and ask God that you may continue to do so.
Thanks for the update, Bulldog! It seems that you’re going to be aggressive in your treatment which I think is good.
I really enjoy your almost child-like wonder about what you’re going through and I’m so very glad for your very positive attitude! I pray both both never end! Oh! And cool mask! When this is all over, it can be the start of a really good Halloween costume!
It helps to let this out. Thoughts and prayers to you and your family.
Good luck and God bless you. Love the posts and the attitude Bulldog! Keep it up and best of luck with the treatments. Godspeed!!
Your engagement, enlightened attitude and energy to serve and learn are well beyond admirably exceptional. Thank you for sharing. Your courage humbles me, makes my own surgeries, tests, and consults seem trivial. God does and will bless you. You are in my prayers.
And here, at first I thought that picture was a dryer screen that you had let go too long... :)
Thanks for being so open and honest about your journey. Please do keep posting. It's wonderful that you can be so positive! Most people would be in a fetal position, but you're able to sit through hours of that, make intelligent decisions throughout, and then go out an enjoy a hamburger. Whether this ends tomorrow, or 20 years from now, I hope that you can get every drop of sweetness out of your time. You're not boring at all. This is fascinating - I've heard of people with this disease, but your story is quite interesting and may provide more hope for those who do have it.
Hang tough is easy advice but its still good advice. My wife and I both came close to death this last couple years and it changes things. We are in our 70's. I pray that you will have good results from Chemo and all the other therapies you have to endure. God bless you.
So impressed with your approach. We all have to be an advocate for our wellbeing. Keep the faith.
Two thumbs up. Continual prayers.
Jim Carrey on suffering. Very moving speech. The text flashing, of what he is saying is annoying, but it’s only two plus minutes long. Profound. If you have not already, look into the Optune device. It has helped some people live better for longer, and there's a good online support community.
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