She said “what the heck is THAT on you?”: Saturday, November 21, 2009
New on the audio page is one of the seminars I attended, The History of Proton Therapy by Ethan Cascio, in the Gointein Conference Room at the Francis Burr Proton Center at the Massachusetts General Hospital. Wow … what a title! Unlike all the other audio recordings on this site, I did just a bit of audio engineering on this one because the background noise was high … basically, I simply cleaned it up a bit. For anyone considering proton therapy for any reason this is an excellent seminar that covers the basics and a little bit more about proton. Runs about 75 minutes. Wear your physics hat if you listen.
This past Friday, I thought I’d felt the technicians doing extra registration marks and set-up on me, but I didn’t think much of it, as is often the case with proton therapy, the angles and directions they fire you at, often change. However, when I got back to Vermont later that evening and removed my shirt, Sher said “what the heck is THAT on you?” … I replied “what?” … and started to look at my side in the mirror. Sure enough, there was writing on my side but I couldn’t read it in the mirrors reverse view. “what the hell does that say?” … here are the pictures. It’s a note to my son Alberic from the technicians J
I’ve been exchanging emails with David Spahr who recently published Edible and Medicinal Mushrooms of New England and Eastern Canada. Here’s a link: http://www.randomhouse.com/catalog/display.pperl?isbn=9781556437953
David is an interesting man with his own cancer story, check out his site too:
http://www.mushroom-collecting.com
This week was the ARIS Annual Meeting, the bad news is unfortunately due to treatment schedule I missed it … the good news is, I should be around next year to attend. Thanks to ARIS that is now a realistic for-see-able goal.
There are two new projects I’d like to add to my plate if my energy returns to anything remotely close, to what it once was. I have both these things pounding my mind each and every day and am going to have to do something about them. They are sort of tied together in some sense, but need to have separate indentities too.
One is, I’d like to start a foundation for cancer’s that are rare … and I mean rare. Even at MGH’s Resource Room in the Cancer Center, I saw abosolutely nothing on Chondrosarcoma. No books, no films, no data stats, nada. Even the staff that worked there were stunned at what they were missing. The thing is, is that your spirit is lowered when you can’t find a story, or a letter, or anything about what you have. Not to be foolish … but it was very depressing to see a huge resource like this with nothing about your cancer. So I’m thinking the goal of the foundation would be to handle or create data, on “missing cancers” that aren’t so popular (for a lack of better words), so that no one is left out. No one should be going through this without some information available. Even if it’s doctors notes and reports.
When I started to research my own cancer that‘s all I had to work with! I had a few reports that Doc D. and some colleauges had published in remote medical journals, and a few other papers on the internet … that’s it. Even my primary (family) doctor had to research what the heck it was before contacting me to say what it was I had. It shouldn’t be like that. No one has collected this data, and it doesn’t look like any is about to. The reason I want it to handle more then just my cancer is because there just aren’t enough people with it … but, put all those rare cancers together, and you have enough to create a library of information on rare cancers. It may not ever be a huge foundation … but at least there would be something to gather information from.
I don’t believe this is a hard thing to do … simply raising some money and awareness would be a good start.
The other project I’d like to see started is a general, online, data collecting bank(for lack of another word) for all cancers. This would be a larger project. In it’ssimplest form, it would collect data from volunterary cancer patients around the globe and search for similarities within catagories. In basic, Howard’s idea. Cancerpedia, built be people themselves, with information and questions provided by health professionals could be a huge value. At this point in time, no one seems to be collecting and mining data in any organized way. Beating cancer is going to take more effort then just doctors can give. It’s going to take all those effected and involved to get together and share information.
This of course would be a huge project …. but it could happen. With todays internet community, I believe you could collect enough data, stories, research, and information, globally, to make a difference in the way some cancers, are not only being treated and viewed, but finding where commonalities (that are now being missed, through an entire array of possiblities) come together, through areas like the environment and other global issues (war zones, climate, etc etc).
Don’t believe for a moment, that cancers are all genetic screw ups in individuals bodies, or that it’s all inheritence based, or even that it’s all environmental. Let’s start collecting that data and information (even if it takes twenty years), and see what we get.
OK …. This is probably a huge amount of dollars … but it could happen.
Tomorrow morning, I head back toward Boston and Nahant for another round of treatment, only about two more weeks to go!
