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February 2015

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Surviving Terminal Cancer Film

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…

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Surviving Terminal Skirts

Holy cow what a night! The Surviving Terminal Cancer documentary premier was so much fun! I had already watched it several times (gaining access because I was on the panel), but the awe factor never goes away. Of course, this is me, so I couldn’t come without a little disaster. As I sat down into the car to head to the Loncoln Center, my skirt split. Literally. Literally all the way from the bottom of my bum to the top of my bum. The most important area to cover. I leaned in to Dan and the driver and said, “I knew I shouldn’t have eaten lunch!” We scrambled for friends to help us troubleshoot, but ultimately, our driver saved the day. He swung through a quick shop, and Dan and I scrambled through the doors. Dan and the employees started throwing skirts at me as I ran for the dressing room. The first one was a raspberry below the knee number. I zipped it up (and it was stretchy – now a must have in my department), and it fit. The girl cut the tags to give to Dan, he went to pay, I finished dressing, and we ran back out the door. It was insane, and hilarious, and it set my blood pressure and my heart racing. I’ll share more when I have time, probably this weekend. The night was inspirational. I was moved by all of the faces of those who I’ve spoken with only via email, and suddenly there they were. I was able to hug and meet people. Several people thanked both Dan and I for the blog which was an incredible honor, I’m starting to get choked up even as I write this. There is no better feeling than hearing that you helped someone find…

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Confidence is Not Cocky

Do you ever do exactly what you want, when you want to do it? To be free? I just left my dirty house, with my unpacked suitcase for NYC, and hopped on my bike for a jaunt around the neighborhood. I caught the final hour or so of sunshine. It was surprisingly nippy out, a great breeze off the ocean frosted my face. My cruiser and I rode donuts around quiet streets, circle after circle, block after block. I didn’t care what people thought, even though technically I was a 30 something acting like a kid. A big old kid, and it felt soft, and comfortable, and safe.   I am so nervous about the panel. It’s one thing to theoretically be on the Surviving Terminal Cancer premier panel, and a whooooole other thing to literally be on it. I’ve had all kinds of thoughts, thoughts of how I can represent our family of survivors, thrivers, those in treatment, and the missing. The movie discusses people who have been diagnosed with glioblastoma, and anaplastic astrocytoma. Those are stage 4 and stage 3 respectively. I’m just a lowly infiltrating astrocytoma. Granted, I’ve been around the block and had my fair share of brain surgeries and treatments, but it’s different. I somewhat feel under qualified, then I think, shoot, I’m just their little sister. According to the statistics, I will grow into a stage 3, perhaps even jump to a stage 4. I’ve always been watching and learning from my older sibling’s journeys, seeing how they navigate, how they handle things. I look up to them, the Ben Williams, and Anders Ferry, and Rich Gerber, those who are living far past their diagnoses because they took their health into their own hands. They researched, and combined, and strategically cocktailed their way into…

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Pregnancy and Glioma Don’t Mix

I want to share why this panel, this invitation to join the premier of Surviving Terminal Cancer, is coming at the perfect time. For the prior month I had been processing the loss of a perceived future. Let me explain. From the beginning of my treatments, Dan and I have always planned on having babies as soon as the treatments concluded. It was a goal, a reward, a carrot dangling to work toward. I have always wanted to be a mother. It has been a dream to fall in love, to create a life, to carry a baby, to birth a baby, to have a family. And I treated it like it was a given. I thought my only issue was to eradicate the cancer cells from my body, to have several years of clean scans, then I was good. But it turns out, after some research, that it isn’t that simple. That cancer will never go away, even if my body seems clean and clear and strong and capable. When I started looking into it I found out that pregnancy absolutely correlates with recurrence. Obviously it isn’t a given, that it would cause me a third tumor, so we could risk it, but it’s so scary! It’s gambling with my life, I feel like our dream is crushed. So over the past two months – since we researched – we’ve been absorbing the information, and essentially I’ve been in a state of grieving. Like I said above, I’m grieving our perceived future, the life I thought we would be able to live. Because I have had this dream my whole life, since I was a very, very little girl, it will take a long time to process the reality that my life will not be what I want it…

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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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