Wednesday, January 28, 2015

Surviving Terminal Cancer

I am trying to pull myself together after watching the upcoming documentary, Surviving Terminal Cancer. Remember when I posted the trailer a few weeks ago? Its about the failures, the downfalls and the possibilities of treating brain cancer. How we have to blaze our own trails because of the broken system. I was able to preview the documentary because I was asked to attend the premier at the Lincoln Center in New York, and join the panel that follows the viewing.


Other panel members include:

Jonathan LaPook, M.D.
Chair: John Lapook, MD (CBS)
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Andrew Von Eschenbach, MD (ex FDA, ex NCI director)
Robert Hariri, MD, PhD (Celgene)
Ben Williams PhD (20 year GBM survivor)
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John Boockvar, MD (Lenox Hill Hospital)

Colin Hill (GNS Healthcare)

Me
 
I'm thrilled, and somewhat stupefied, about the entire thing. I'm excited to be a part of this movement to demand change, to acknowledge the issues in our care, the issues in the system. I am slightly intimidated by my highly educated co-panel members, but as you know I am passionate and have quite a bit to say about the brain tumor system. 

The free premier is on February 18th, a Wednesday. (There is also a London premier on Feb 4th for those across the pond). The reception begins at 6:00 pm, the showing begins at 7:00 pm, and the panel will follow the documentary. As I mentioned above, it's being held at the Lincoln Center (Walter Reade Theater). Also, there isn't a budget for a videographer to record and stream the panel, and I'm hoping to find a way to at minimum record the discussion and questions. I feel like it's very important to get the discussion documented for historical purposes, and to continue the momentum of change, to keep brain tumor fighters in the know. I've already gained permission by Dominic Hill, the producer/writer/director to record the panel, so if any of you have friends, or family, in the NYC area that have a videography background that would be willing to donate their time, and equipment, to record the panel it would be amazing! I realize it's a long shot, but it would be a profound gift. This is how we demand change, by spreading the word and working together. We know that the current treatments don't save our lives, but it doesn't have to be that way. 
 
The charity couldn't afford to pay my travel and lodging, or any expenses for that matter, to NYC, but Dan and I felt that this opportunity was too powerful to pass up. Do you ever feel like you can't afford to do something, but in the same vein you can't afford not to? That is why both Dan and I will be flying to New York, and why we will be a part of this movement. I want change, I want to save lives, I want to stand up and be a part of the solution, even if it's difficult. Sometimes it takes risks, and sacrifice in order to help. This was never meant to be our whole lives, it was never meant to be a life purpose, but I feel like it chose me. And I know I can help. I know I can be a catalyst to redefine the brain cancer journey. Thank you to all of the people along the way that have helped pay for flights at times, donated air miles, or donated toward my treatments. Thank you for your love and your support, you have helped keep me alive, and you are the reason why I know I have to do this.

You have paid it forward to me, and now I will continue on in the same spirit. This is one hell of an opportunity. Seriously, how did I get this fortunate!?! I gotta go pinch myself...

13 comments:

  1. Rock on girl....you are amazing!

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  2. You are amazing and they are lucky to have you!!
    Linda

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  3. Wow how Awesome Glad you can go and Dan too :-)

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  4. I cannot imagine anyone more appropriate to speak at the opening night of this documentary than you with that phenomenal, brilliant and resilient brain of yours. The innovative and trail blazing research you have done will bring new strategies, treatments and hope to many others. Please don't get overextended in the days before your event; set boundaries, stay balanced, be good to yourself. Save your energy to give your best to this network of experts sharing and learning together. I am donating to your travel fund to help you help others, both patients and professionals alike. You are Good Medicine! love, C

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  5. So incredibly amazing. What an honor and a real honor for THEM to have you on that panel. You are going to shine! We will be there front and center (or any seats we can get)!

    Big love,

    S, J and O!

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  6. So proud of you Jess. Thank you for your courage, strength, gift of writing and encouragement. You help us in so many ways to stay strong and positive. You help me keep going in my search for Chris and progressive MS. You will shine in New York.
    Your house sounds dreamy! Very happy for both of you. XO Leisa

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  7. Hi, I am attending the premiere on February 18th. I was wondering if you have found a videographer to film the panel? My friend is in the field and is willing to help us find someone in the city. He is a friend of my brother's who passed in November of 2013 to brain cancer. He has a strong network of friends who would do all they can to honor him and all those currently fighting. You seem like an incredible person and I will include you in my prayers. See you on the 18 th. Please let me know if you are still searching for someone, I will pass the word on right away.

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    1. First, I am very sorry about the loss of your brother. And thank you so much for the offer on the videographer front, we did just get someone lined up. Thank you for reaching out, and I hope to meet you at the premier!

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    2. That's great! Glad you found someone.

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  8. How Great to find your blogg Jessica!

    Greetings all the way from northern Sweden
    Nadia Ferry Yassin
    wife of Anders Ferry brain tumor survivor

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    1. Oh my gosh how wonderful! Hello Nadia, I absolutely love you guys so much! I'm so glad you found me. I have watched the documentary over five times, and each time I hold back tears when I hear Anders speak. Please know that you and the whole family are deeply loved and supported. I am sending big hugs to you, Anders, and your daughters. :)

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  9. Hi Jess, I've been EAGERLY awaiting the release of this movie for weeks. Ben Williams has been a hero of mine for years, and to learn that another hero of mine, namely yourself, will be joining him for the panel discussion adds even more excitement! Were you successful in filming the discussion? If so, where and when might it be posted?? Thanks so much for your efforts in filming the discussion and for aiding in the cause!!

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  10. Hi Jess, I've been EAGERLY awaiting the release of this movie for weeks. Ben Williams has been a hero of mine for years, and to learn that another hero of mine, namely yourself, will be joining him for the panel discussion adds even more excitement! Were you successful in filming the discussion? If so, where and when might it be posted?? Thanks so much for your efforts in filming the discussion and for aiding in the cause!!

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