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Don't let anyone else put limits on your life. You are not a statistic. People live long lives, even with cancer, so don't give up!

 

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More Medical Transparency

“Studies show that as many as 94% of doctors report an affiliation with and receive money from drug companies and medical device companies. Though doctors deny these payments influence their decision-making, ample research demonstrate that it does. Many doctors’ salaries also depend on number of procedures done. At a time when 30% of all tests and treatments are unnecessary, patients have a right to know what may be influencing their doctors’ recommendation about their health.”                                                                                                              – Who’s My Doctor    This woman gets it – she is exactly the kind of doctor that understands the issues. Exactly the kind of doctor we need to support so that more doctors like her come out of the woodwork. I am amazed by her story, and by the backlash from other doctors. Clearly they feel threatened because it would effect their extra income. She is powerfully inspirational. Although we’ve never met, she has joined the crew of change; she is creating a new system. Watching her video gave me a surge of excitement, and love. I viscerally love people that care about what’s right. That care when things are wrong and they make the effort to fix it, to do all that they can. It’s a very beautiful thing. Here’s the TedMed write up about Dr Leana Wen: “Wouldn’t you want to know if your doctor was a paid spokesman for a drug company? Or held personal beliefs incompatible with the treatment you want? Right now, in the US at least, your doctor simply doesn’t have to tell you about that. And when physician Leana Wen asked her fellow doctors to open up, the reaction she got was … unsettling.” I still can’t believe that doctors in the US don’t have to admit who they’re getting payouts from. It’s disgusting. It should be…

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Just a Bird

You know what I love? This guy… …it’s stephen from http://astrocytomaoptions.com! How fun is that! He came for a visit. There are so many things that I’m grateful for that I would never have experienced without this brain tumor diagnosis – like wonderful new friends. Spending time with Stephen was a blast. We’re different, but have such similar views on many, many things – most things in fact. We laugh, and talk about the research, and scheme, and theorize on off-label drugs. We talk about life; we talk about everything. It’s exciting, and hopeful, and it feels right to be taking matters into our own hands. I am incredibly grateful to be living in this new advancing era of brain tumor science. I’m just a bird riding the wave, but to be near the ship leading the research, to be near the captains, and the explorers of the field, is such a treat, and a joy, and gift.  We have a disadvantage, usually, in brain cancer because the blood-brain barrier prevents chemotherapies, and other drugs, from infiltrating tumor cells. Also, we are such a minute group compared to the majority of other cancers, which gives us far less funding and research. However, perhaps those disadvantages could become advantageous. Perhaps the degree of difficulty could be intriguing to doctors and scientists and philanthropists and curious people alike. Perhaps the lack of funding could cause an underdog mentality, where people want to help us. It could be that because we’re such a small group, that maybe we could be easier to study, to track our cases, our pathologies, our success stories. Whatever it is, I feel hope. I feel like big things are coming with the premier of Surviving Terminal Cancer (http://www.survivingterminalcancer.com). We are on the cusp of change, and I for…

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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: 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) 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…

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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…

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[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.  Yum.

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Survivor Problems

Oh you guys it’s so weird. There is this thing that I am realizing that many cancer patients go through. They have aggressive bouts of exhaustion, then they get depressed that they’re not out doing things, not conquering the world. One of my beautiful camp buddies posted a dark photo of herself in the cavern of her bed. Her hair was mussed, her face pained. She was berating herself because she isn’t as productive, and accomplishing as she was precancer, prediagnosis. Now this badass girl, I am not exaggerating, has had more cancers/medical issues, more surgeries/treatments/etc. than most humans will in their lifetime. The girl has been pin-cushioned, poisoned in the name of survival. She is a force, one of the largest personalities I know. I remember just watching her emitting her fearless vibes, her mastery of the rocks, the confidence in her soul, and when I saw her recent Instagram, my heart ripped for her. It still brings swells to my eyes. I had no idea how much this overwhelming exhaustion, and self doubt permeates the cancer world. It seems crazy when I look her, so obvious that she’s being too hard on herself, but also I can relate perfectly. It’s something I live everyday. It’s so frustrating for us. And it’s impossible to explain because we don’t understand it either. We can’t understand why our bodies and minds won’t just do what we want. Is it all the cutting? The toxins, and foreign substances that have cursed through our veins? We don’t know, but instead of just being patient with our bodies and our situations, we get sick of it. We get sick of being sidelined, sick of not being able to be the person we want to be, the person we once were, the person we should…

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Know My Limits

You guys are so patient with me. Thank you so much!  I hung out with a buddy this morning, and it was so refreshing! And fulfilling. There are people that just get you, that make you laugh, and understand your trials, and it’s priceless. With her help, I am coming to the realization that if I take care of myself (just like you guys said – you are so smart!), I won’t get worn down. That if I don’t take time out each day, I will drown. That this life alone is a lot, tack on a brain tumor trial, then tack on putting your story out there online, then tack on helping people that come to you for advice, then helping others research their cancers. It’s taxing, but no one is trying to tax me, it’s me putting it on myself. It is my responsibility to know my limits, it’s my responsibility to express that, and let others know if I’m overwhelmed. People aren’t mind readers. Next time, my goal is to not get this worn down, to not let it get to this point.  It was hard to get out for a walk today, it had been weeks, but I reminded myself that I just have to put one foot in front of the other. Little by little, before I knew it, I was walking out the door. And it’s all part of taking care of myself. I had been treating exercise/meditation like a luxury, not a necessity. This is my health, it has to be a priority. (Say and repeat and maybe it’ll sink in.) Thanks again guys, I really appreciate your insight, and kindness. I can’t imagine what my life would be like without all of your love, and friendship.  What’s good for me is good for…

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Please Forgive Me

Sometimes I wonder what the hell I’ve done over the (almost) five years. What have I even done? Am I even contributing to society? Am I helping enough? What you guys don’t see is that I get so tired. I get these brain flu episodes. I can’t explain it; I can’t anticipate it. When I don’t feel well, when I can’t get my brain to unfuzz, I don’t blog. I don’t complain about it, or write about it very often, because I figure it comes with the territory. I have had three brain surgeries, and with that comes damage of the wiring, of my thoughts. I’m missing healthy brain tissue, tissue that I’m sure the little sensors in my body are still searching for. Anyway, I usually give symptoms a period of time before I panic and post, and now it has been about a month of living in silence. I have been having horrible headaches, but they’re only on one side of my head, the side with the tumor. It is just as my original brain tumor headache arrived, it started all over my head, then it shifted and it was only on the side of my brain with the tumor. I could (and can) literally feel the barrier of my midline (the halfway point between the two hemispheres in the brain) stopping the progression of pain. To have this type of headache right now is absolutely terrifying. My next MRI is in April, and I do not want to push it up sooner. If the headaches, and confusion, and exhaustion continue then I will revisit. That may seem different than the usual Jess. I’m known for not putting things off, but there’s a fine line between putting things off and not being an alarmist. In the meantime I’ll…

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A Daughter’s Love

There are so many beautiful souls that have been effected by brain cancer, and one of them, Karin, is a very special woman who loves her father so deeply that she created a fundraiser to raise awareness and money for brain cancer research in honor of her father’s glioblastoma diagnosis. This woman makes things happen. She is individually an inspiration, let alone what you’re about to watch and read. I meet so many people, many online, who reach out for information, or answers to various questions, and I’m happy to help. This time I was invited to participate in lending my voice (I’m in the gobs of clips at the end of the video), and excitement, and use my ability to spread news. I was honored to be contacted, thrilled to lend a hand. Instead of me trying to reiterate Karin’s message, I have posted her most recent correspondence below so that you can understand the big picture. I realize as I write this that I’ve been posting quite a bit about things that are asking for money, be it other patients, etc., but we all have different things that touch our hearts and I figure that even if just one person signs up for the concert or donates a few dollars, it will still be a success. In fact, if no one donates, you are reading this right now and we’re spreading more information about brain cancer. It’s an ongoing battle, to get the word out, to get funding, to get access to research, for people to understand how little there is to help us survive. So just the fact that you are reading this post in this moment is a wonderful gift that you’re giving me, and us as a whole. So thank you. Hi there Jessica!  I…

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Supressed Dreams

It wasn’t a conscious decision, but I’m noticing that I’ve been posting less and less about my personal life, and more about other stuff. After almost five years of blogging my brain tumor journey, I’m realizing that emoting is exhausting. Truthfully, looking back, I never really thought I would even be alive this long. I believed what the doctors told me, that I’d be lucky to have 4.5 years. It’s not that I thought I would die, it’s more that I couldn’t conceptualize long term living. I couldn’t even imagine what life would look like, and I felt that dreaming of something that may never come was unhealthy. So, instead of dreaming of the future, I’ve been living in the moment, focusing on each day, and day by day it has turned into years, and years. It’s thrilling, and confusing, because if I’m going to actually live, actually survive, then what is my life going to look like? And that’s what I’ve been going through over the past few months. I’ve been absorbing the reality that I may live. That I may be able to grow old, and enjoy all of the things that come with that. That’s the weird thing with this kind of diagnosis, is that they say the tumors always grow back. That we’re never safe. But I know many stories of people that survive long term. They’re not the norm, and none of them are unscathed by their brain tumor diagnosis and treatments, but they’re alive nonetheless. I guess I’m adjusting to the concept of living long term, what that would look like. Whether or not I should entertain making some goals. When I was diagnosed I was 29. Now, this year I’m turning 35. I have been trying to survive for so long, and with…

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