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Wednesday, May 16

Advocating with a dizzy head

I spent the early part of last week in D.C. advocating for federal policy change with the National Brain Tumor Society. It was really interesting (and not to mention terribly exhausting). It's always amazing meeting people who've been through exactly what I've been through and hearing the jokes develop. Phrases such as, "We need a non-brain tumor patient to serve as our collective memory," are fairly common, and to a certain extent they're true; we have very different memories and not to mention appearances and physical capabilities now than we did before our own little afflictions arose. I actually have some videos for anyone searching for some help with their own battle.

Liz who is the singular captain of the LizArmy was there. She was diagnosed with a brain tumor and survived 24 months of Temodar. She's now a one woman fighting coalition against these nasty little beasts. Find her online Here's her plug:



Also Greg who is a miraculous survivor of Glioblastoma Multiforme (a stage IV brain tumor that kills just as quickly as it presents itself). He is a survivor and caregiver and he wants to help anyone going through the whirlwind of brain tumor diagnosis. Here's his plug:



As for me, I made an appointment to get an MRI  and follow up appointment on Monday, June 4th. I have days where I'm dizzy all day. Like I'm a guy with a constant sense of vertigo who can't orient himself to the nature of his world. I even have blisters on my feet from walking differently. I just want this to be over, but I do realize that this could just be the beginning of a long string of bad news.