I'm home; I'm slightly rested. I'm not even remotely caught up because I met all kinds of lovely people that are in the crux of diagnosis, or recurrence, and need some help - I have been troubleshooting and redirecting so that people can have research, and resources. There were also many others that I met that just wanted to say hi and graciously thank me for my blog. (Wow.) I am incredibly humbled, and still kind of spinning from it. It's surprising, and really, really cool. What I like about the whole situation is that there are all these people that are taking their health into their hands. They're thinking outside the box, and combining treatments to be more efficacious. They're going to their doctors with research and questions. They're not passive patients. I've mentioned it before, but if you really want to survive a diagnosis of brain cancer (or many cancers for that matter), you have to be drastic, and calculating, and proactive. And meeting so many patients at the premier that are off and running, like a scavenger hunt, making things happen, is thrilling. I see the hope and excitement in front of the fear. And that's incredibly valuable. It's what it takes to move things forward.
Anyway, from the moment I walked into the premier, I was up and running. People were introducing themselves, which was fantastic. It's a very unique, and foreign situation to be in when people know who you are, and are familiar with your story, your thoughts, your personality. It's nice, though. I actually really appreciated it. By them knowing who I am, what I believe, what I stand for, we were able to cut straight to the chase. And aside from that, if they were coming to me to talk, I figured their values about cancer care must be somewhat aligned. I do love directness and cutting out the fluff.
From the whirl of the reception, we were funneled into the auditorium. After that I can't remember what came first, which introductions happened. There were various speakers, including the director, Dominic Hill. He spoke of his drive to create the documentary after his brother-in-law was diagnosed with glioblasoma. The heartbreaking journey he watched, and went through, with his family was the great impetus. He saw so many flaws in the medical establishment, and he stood up, to call out the broken system, by making this film. The most amazing aspect is that Dominic is not a filmmaker. He did this out of passion, and desire. Teaching himself, with the help of a mentor. It's seriously profound what he did. And this documentary can never be taken away, it's out there, it's a creation for thought, for truth.
After the film ended, we jumped directly into the panel. Unfortunately, it was short as we were running out of time at the venue. That part was a disappointment for me. I know that when I first watched the documentary, I was floored. I was flabbergasted. It spoke directly to my heart, my soul. It verified everything I was feeling, which was powerful, but hearing my concerns and gut feelings expressed by the experts, the interviews with the various doctors, it solidified all of my fears, that we're essentially being fleeced in a medical sense. That the medical system isn't set up to cure us, or help us survive. I don't think it's anything malicious, I think it's just the fact that we're working with an outdated, CYA (cover your ass) system. So when I thought about the panel, I was hoping that viewers would be able to ask questions, that we could get into an open dialog with the audience. The panel ended up going a little haywire, a little bit off topic from the movie, but it ended up being fine. I'm going to be out of town for the next week, but after that I'm going to try and do a few web shorts to discuss things from the movie that I found were really powerful, and shocking. I'm hoping that we continue the conversation, perhaps through the comments from the web series. We'll see how it goes. I just want to continue the dialog, and acknowledge the powerful momentum from this movie. In my opinion, it's one of the most wonderful things that has happened in the history of brain cancer. We may be a small group, often unrecognized, and largely misunderstood, but we are officially on the map thanks to Dominic, and whomever privately funded the film, and to those who supported the entire cause - specifically
The Brain Tumour Charity.
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| From Left to Right: Jessica Oldwyn, Andrew Von Eschenbach, MD, John Boockvar, MD, Rich Gerber, PhD, John Lapook MD, Colin Hill, Ben Williams, PhD, Robert Hariri, MD, PhD |
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| A Closer Shot: Jessica Oldwyn, Andrew Von Eschenbach, MD, and John Boockvar, MD |
The most exciting part of this entire post, is that
the documentary is now available - at no cost - for viewing!! So you can now watch it if you click this
BUTTON, by clicking it you will be redirected. Please, please feel free to come back to this post with thoughts. I want to hear what you think. Or save those thoughts for a week or so when I do my web series, here on the blog. I really want to hear your thoughts, and get a discussion going. At least have a location where we can vent, and get excited, and gain power in numbers.
And when you watch this free streaming movie, this documentary, you'll learn about the upcoming clinical trail for newly diagnosed glioblastoma. It's a multi-agent cocktail of off label, re-purposed, drugs. It's happening in Germany because our FDA clinical trials are single agent studies, which we can now see are clearly elementary in thought and in practice. Cancer is a multi-variable issue, that's why single approaches are failing, and people are dying. Cancer uses multiple pathways, and mutations, and crazy various tricks, I don't even know all the correct terminology, but what I DO know is that we need a cocktail approach to hit cancer on as many levels as possible, and we need to do it strategically. Anyway, I'm going to let the documentary do the talking. New York was a pleasure, and a treat. I was able to spend time with so many brain tumor researchers and survivors and doctors. For the first time on my brain tumor journey I felt at ease. I felt completely comfortable, both at the reception, on the panel, and at at the events following. I was able to have real conversations about the research, and hear about the inner workings of this upcoming clinical trial. It was a gift, and I am incredibly honored.
When Dan and I walked away from the intimate luncheon on the day after the film, a luncheon to discuss the clinical trial, I was giddy, and exuberant. I told Dan that those brains thrill me. Spending time in that arena was the equivalent to someone else's Disneyland, or Paris. I realize it's a poor analogy, since I'm comparing people to places, but it's the excitement, the thrill factor. I love these conversations. I love talking about the research, and the ins and outs of the brain tumor science. I could talk about this stuff all day, every day. And technically, I kind of do, but when it's in a virtual "brain tumor think tank" consisting of top researchers, and doctors, and survivors that are literally on the forefront of change, it is something that I don't take lightly. I use the word, "honor" quite a bit, but the truth is that I am constantly so honored to be a part of this movement (albeit a small one). I have felt blessed throughout this journey, just being able to learn how to read, and speak again, and grow my brain, and now I just feel honored to be capable of trips like this, capable of engaging in events like this. I could have remained simple, and essentially incapable of higher thought. Thank you world, to the Gods, to my support systems, to fate, and luck, and hard work. I love this life, this brain, and I will use it to help others in any way that I can. Perhaps it's true that one person really can make a difference, and when we come together, we really can move mountains. I love you all.
