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)
Andrew Von Eschenbach, MD (ex FDA, ex NCI director)
Robert Hariri, MD, PhD (Celgene)
Ben Williams PhD (20 year GBM survivor)
Dr. John A. Boockvar.jpg
John Boockvar, MD (Lenox Hill Hospital)

Colin Hill (GNS Healthcare)

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...

Tuesday, January 27, 2015

Our First Home

We fell into a little piece of heaven on Earth. Literally. Dan and I have moved. And it's a little home, that we own, that is magically cheaper than renting in Seattle - and trust me we were renting on the cheap. What a blessing. Dan and I keep pinching ourselves, between smiles and embraces we say things like, "How did we get so lucky?" "Why do we get to live this beautiful life?"

I used to feel like I had to be in Seattle, in the city, the epicenter, to be functioning. I needed the metro, the walkability, the mobility on my bike - all my friends were there, and I can't drive very far. But as Seattle continues to boom, and expand, and explode, the prices and the cost of living was an uphill battle. We were struggling to maintain, and with an ever present fear of a recurrence and the expense of current ongoing treatments, we started exploring other places to live. We considered the Washington peninsula, we looked at Camano (I refuse to call it an island since it doesn't require a ferry), we looked all over the north coast of the state, and eventually we found our perfect little spot. Edmonds. If you're not familiar with the area, or the state, Edmonds is a little seaside community just 25 minutes north of downtown Seattle.

When our mail person, Michelle found out we were moving, and we told her where we were headed, she laughed, cocked her face and said, "Are you retiring?" That's the reputation of Edmonds, that it's full of blue-hairs. But as you know me and my retirement home volunteering ways, it was one of the many things that drew us in. There's still a PCC, our local co-op grocery store that I love so dearly. We have a lovely dog park right on the water, full of sandy beach, and dog obstacle courses which Emma loves. There's a train that takes you directly into the city in one stop. Talk about an upgrade, from bus to train! (And it's the same price.) The whole town has a speed cap of about 30 miles per hour which is rarely met since no one is in a hurry - practically everyone's retired. It's the perfect place for me to drive. It's the perfect place for me to rest, to find my zen, to heal, and thrive. Our little house is less than a 10 minute walk to a hidden beach. Everywhere you go there's views of the Olympic mountains, and the emerald waters of Puget Sound. When you fill your lungs, each breath feeds you with salty ocean air. For an island girl and an island boy, it's as close as we can come to home.

I can't believe we have a home. And it has double paned windows! It's unfathomable how warm we now are; we're no longer cold to the bone. We have a tub for bathing, what a luxury! I can't wait for spring, to plant a jungle of a garden, to feed our bodies and our souls. I've joined a Monday morning writing group at the public library, and well over half have published at least one book. They're inspirational, and confident. I walk around downtown and visit with the shopkeepers, all but one so far have been family owned. It's a dream. But it's not. This is real, and it's ours; we're a part of it, and I am so grateful. Life keeps evolving, and you never know where it's going to take you. Just a few months ago we never thought we could afford a home, and continue my treatments at the same time. But when you expand your view, and reevaluate your goals and dreams, sometimes you surprise yourself. It's not as easy to see friends, but we keep in touch just the same. I'm looking out our living room window at the old growth pines across the street as they sway in the misty air and I'm filled with relief, and pure joy. Even through the troubles, and the heartache, and fear, I'm constantly reminded of our fortune. It's something I will never forget because I wear it. It's tattooed on my heart, on my soul.

Saturday, January 24, 2015

[Weed] [Dope] Smoothie

I just created my first marijuana smoothie!(I'm such a nerd, I should probably call it weed or dope.)

It's absolutely delicious!! I used a little less than half a green apple, a large handful of marijuana leaves, and a handful of salad greens in water. It tastes minty, and fresh. And although, because it isn't heated, there are no psychoactive effects I still felt a slow wave of calm roll over me. It was wonderful. The acid (raw) forms of THC and CBD are supposed to help with inflammation, nausea, muscle spasms, and tons of other things, even anecdotal stories of it fighting tumors and cancer. And it's just like eating lettuce, or basil. It's fantastic! 

You guys know I love greens, and plants, and this is right up my alley. I am very grateful to have these fresh leaves, I wish I could afford enough, or have the space and privacy to grow forests full, so that I could eat a smoothie or two per day. I can only imagine how wonderful I would feel! For now I'm happy for what I've got.