Join a relapsed leukemia patient on a journey to fight and understand this disease while dispelling media myth and medical mayhem.
Cancer. Leukemia. It's a quiet fight and there is more myth than fact, more fear than hope, and definitely a huge gap between what we know and what we are afraid of. I want to close that gap and share my story on digital video. It's a medical adventure, a rare combination of diseases that makes things very difficult (I have aplastic anemia and acute myloid leukemia with hypo-cellularity) and a personal story. My story.
I was diagnosed in April 2011. We thought we had remission, but I never bounced back. In June, 2012 it was official. Relapse. Without treatment, a 2% chance of surviving 24 months. A 20% chance with a bone marrow transplant* and a 50% chance with Vidaza, the treatment I am now starting.
*Here is what the Bone Marrow Transplant Math means to me. A BMT is really the only possibility for a "real cure" but here's why I have chosen not to have one: http://anotheralison.wordpress.com/2012/06/27/bone-marrow-math-revisited/
The first year of this fight, I documented by writing about it, blogging about it, and sharing my story on facebook. I moved my timeline to my blog to make it more permanent and put it in chronological order. Here is a basic over-view of what I went through up to now: http://anotheralison.wordpress.com/aml-on-facebook/
Here are two entries from that time which were really in depth:
- Adventures in the ICU: http://anotheralison.wordpress.com/2011/09/28/adventures-in-the-icu/
- Ever wondered what it feels like to get a bone marrow biopsy? http://anotheralison.wordpress.com/2011/09/28/thoughts-about-a-bone-marrow-biopsy/
Now I'm moving to digital video. This next year, I want to document this relapse with a web-series called "A Rather Absurd Year." It won't be pretty. It won't always be pleasant. But it will be honest and interesting and thought-provoking. And for anyone who has to face this, it will give a visual reality to what I went through.
Here is one of my beginning filming attempts. This is a start to my Z list. (You have X amount of time and you have Y amount of energy. This means you can only accomplish Z amount of things.) One of the things on my Z list was to take a baseball bat to the most obnoxious piece of medical technology. The folks at UNM let me do it and they let us take pictures.
I do have permission from the University of New Mexico Hospital and UNM Cancer Center to film myself and my care on any location. The two caveats- no one else, patient or employee can appear with giving their consent first- and any opionions expressed by an employee are clearly that of the person and not the university or the hospital.
Note: It's very possible that I won't be able to finish this project. In the event that I cannot, my son William Hendley has agreed to complete the final episodes. I'll have a plan for him, with things like end of life issues and other things I hope he covers, but I won't be here, so I make no promises.
What the KickStarter Will Be Used For
Better equipment. Software. A small amount to cover the rewards.
Over $25 - Get a signed poster from the Series (which I am still designing).
Over $75- Get a signed poster and a hand-painted proper tea mug. It will be one of my black and white pieces, and each one will be unique, but I'll be using techniques like in the drawing below:
THANK YOU ALL VERY MUCH. Thank you for supporting this project, but also thank you to everyone who has already been on this journey with me. I have been able to fight this thing because I have the most amazing group of people in my life- such a strong and amazing support system, and I am so grateful. Thank you to the folks at kickstarter for helping me find a way to document this!
Have a question? If the info above doesn't help, you can ask the project creator directly.
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Pledge $25 or moreYou selected
A signed copy of the 11 x 17 Web Series Poster I am creating doing promote the series.Estimated delivery:
Pledge $75 or moreYou selected
A hand-painted proper tea mug.Estimated delivery:
- (14 days)