July has been a world wind. With travel, camp,media events, and making impacts wherever I am. Whether I’m at home in Milwaukee WI, or Washington D.C. Today I’m in Orange County California to meet with others that are truly effected by GBM. We have an event called “Life on play day”
At the start of July I went to volunteer as a counselor a Camp one step out in Lake Geneva WI. This camp is for kids who either had cancer or that are treating for cancer. I spent a week helping out with 9-10 year old. Let me tell you this was no ride in the park but to see those kids faces all week filled with joy! Made it oh so worth it. What an amazing place i get to. Volunteer at when they have camps that line up with my schedule.
I had the privilege to be in D.C on the first ever GBM day. I went to a gathering at the capital to talk with senators and representatives that are making a difference and also made GBM day happen. While I was there I was able to talk with a number of senators. One in particular was senator Mcsally. She took the time to Truly listen to what i had to say and my story. We walked back and forth for a good church of time. I gues i should say minutes. But minutes and an events like this makes the big impact. I was wearing my optune while moving around the room and trying to talk to everybody and hear the stories. Lawyers and senators coming up to me wishing me luck and asking about my story. I was more than willing to talk about my story. I couldn’t believe the people I actually got to talk with. I felt like i was out of my element when I first got to the event but as soon as the mingling started I wanted to make sure I got around to everybody that was there. I especially wanted to talk with the speakers and the senators that were there due to their direct link to the GBM day as well as the cause. I wanted to make sure that I could make their fire burned higher for making things happen with research and funding and pushing for more to be covered with Medicare. I felt in my element. Where i was suppose to be. Right place at the right time. In fact when the group I was with said they were getting ready to go, I said “ already? I’m in my groove.” I even said “I would get my own ride back. I wanted to make sure I didn’t leave any stone unturned.
Shortly after the GBM day, Medicare released a statement saying it would cover tumor treatment field treatment, so basically the optune for newly diagnosed GBM patients starting in September this year. This is a big win!! The optune provides a form of treatment for a GBM while keeping quality of life while providing treatment.
My next adventure came when the media department of Froedtert hospital reached out after reading a recent article online that i was featured in and also had a link to my blog.
They wanted me to give a quick speech about my cancer journey to the media to help kick off the “Cancer Crush” run/walk coming up in September. I Said i would be honored to speak. The small event was in front of media and some of the heads of research and cancer treatments as well as others. With the optune ties I have been given, its a mission of mind to make an impact in lives anyway I can.
As I finish typing this blog as I’m out in California. I’m getting ready for the weekend at an event called Life on Play day which is put on by Novocure. Which is the company that optune comes from.
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