I’m EGFRvIII positive
This is just a quickie, fun post while we wait for real news about Chicago/Novocure plans. [EDIT: It was supposed to be a short one.]
Clinical Trial — NCT01498328
While we were waiting to hear about Novocure, we got my tumor tested to see if I qualify for another trial. Only about a third of people do test positive, which is the requirement, and mine came back positive. That’s good news, but as I read the consent form I realize again that it’s not for my benefit. This is for the benefit of medical science. I did my part with the first trial. Why risk side effects or chance getting the placebo? I want to do things that make me feel I’ve got a chance.
It’s a little freaky, but my Photoshop aficionado, designer friends will understand the urge to play with superimposing my head into the Novocure product photo. Here it is:
I anticipate stares and strange looks in my future.
Healing Sound Frequencies
I’m hesitant to share this, because it was a little embarrassing. Yesterday I went to an event promoting living (raw) foods, healing therapies like infra-red sauna, foot baths, and so on. One of the presenters, “Assention Ambassador” Astarius Miraculii, sang what he called a healing sound frequency. As he suggested, I participated by closing my eyes and setting an intention of seeing myself tumor-free and healthy. As he sang, an unexpected thing happened. I cried, a lot. I couldn’t stop it. I was silent and not a bawling wreck, but still it was hard to control. I rarely get this emotional so I guess I just needed a release. Anyway, here’s a link to a video of what he sang. (If you get fed up with the introduction, skip ahead to the one minute mark).
He then went on to play the didgeridoo, which was very nice as well. I won’t be seeking counsel from him but it was nice to see once.
As I left the event, I was compelled to speak with the parents of a group of young children I saw inside playing with cell phones and tablets. I had just watched a video by Dr. Mercola which presented facts and studies about cell phone radiation. I was always suspicious of my cell phone’s role in my tumor. Children are very much more susceptible to this radiation than adults. The video is long but the information is compelling. The father was appreciative that I brought it up.
» Here’s a link to the information.
When I was going through the unpleasant process of daily radiation, I saw infants and young, bald children having to endure even worse procedures. Parents, please be mindful of technology and diet for your kids.
I dislike sounding like a conspiracy theorist but it seems like greed is the root of all the bullshit that makes life more difficult and dangerous than it needs to be. Exploiting shortcuts without regard to the effect on the masses for the sake of big profit seems to permeate every industry — technology, food, medical, finance and on and on.
Sorry, this was supposed to be a short, fun post, but got kind of gloomy there. Have a great weekend and Fourth of July coming up!
It sounds as though the “Ambassador” helped you release some pent-up feelings, Ken. That’s all that’s important. I’ve heard Tibetan monks’ “Ummm” chanting and found it boring, nothing like his intonations that seem to block out all else. Interesting fellow he is.
enjoyed reading Ken. I agree with your greed observation.
Have you read Norman Cousins? I think you’d like him. Along the same same lines, Robin Williams had the right idea when he played Patch Adams. I don’t think many docs bother to get to know the people who have problems; just the problems people have. With that in walks the greed.
I have not but will look into it. Thanks for the recommendation. My reading list is so long!
Thank you for documenting your journey so graphically. I’ll be checking in from time to time. My wife’s journey began Jan-2012 and she is a few weeks away from a follow-up MRI, after her first recurrence and a switch to Avastin infusions alone, which I’m sure isn’t enough for a woman who is still the most alive person I’ve ever met. Take care and all the best!
Thanks for commenting. I’d be curious to hear more details about your wife, like why Avastin infusions alone was the prescribed (or chosen) treatment after recurrence. Good luck!