Monthly Archives

August 2014

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We Are Strong Beyond Measure

I can feel it in my bones; I’ve turned a new leaf. I am no longer fighting this role I’ve inherited on Earth, this brain tumor life. I am whole heartedly embracing it. I’m enthralled with the research, the supplements, the current treatments, the treatments down the line. I am happy to eat my veggies, and down fish, flax seed, and coconut oil. I’m thriving on clove after clove of garlic and pill after pill.  I can’t believe medical professionals – educated people – said I wouldn’t walk or run or read again after my hematoma. Here I am, I’m thriving. My brain is so happy it wants to kiss me. I just went down to the lake to take a break from all of the cancer research, and my light reading is on quantum physics. And I love it. It makes sense. It excites me, and challenges me, and makes me giddy. Who would have thought? Clearly not the doctors.  The brain is miraculous, and if you treat it with kindness, feeding it the right foods, exercising it with new stimuli and challenge it, it will sprout new cells, and new connections will be made. I can’t believe that I’m one of the lucky ones where my diet and lifestyle and perseverance is working to heal my damaged brain. Depending on the damage, I’m sure it doesn’t work for everyone. That’s the thing about life, there aren’t any guarantees. All you can do is give it your best shot. And never give up. And when miracles happen along the way, whether they may be small or large, celebrate your fortune. It has taken 4.5 years to recover from the hematoma and hardening of my duramater. It almost killed me, but it didn’t. Some people like to say, “What doesn’t…

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Acceptable Growth Deemed Stable

Sorry it’s been a long time since I’ve posted, I just don’t have enough time in the day to do it all! But things are fabulous. Dan and I keep noticing amazing gains in my brain. It’s profound, and exciting, and it makes me feel like I’m getting smarter and smarter and ready to take on the world. Even my energy levels are increasing! My comprehension is shattering old levels. I feel like I’m finally at a point where I’m as smart as I was before all of my brain surgeries, before that hematoma seriously damaged my brain. Dan’s pretty sure I’m almost there as well. Maybe he’s hesitant because he has an inflated view of my smarts back in the day. Works as a compliment in my world. But man, it feels really good to “get” things. My level of research is compounding; things are coming together. There are so many ways to kill brain tumor cells, and it’s thrilling! I haven’t just been researching, and such, I also had one of my best friends from college come stay with us for a weekend. Then just a few days ago some of our NYC buddies came through on their annual NW stay. Talk about refreshing. I am so lucky to have such wonderful people in my life! This is exactly what life is about, isn’t it? Friendship, family, love, connection. Considering I could have died during the aftermath of my first brain surgery with that hematoma debacle, then a year later when I had that grand mal seizure while driving highway 2, I’m incredibly lucky to be alive. There isn’t a day I don’t think about how lucky I am to be here! Have you guys read Grain Brain? You know I love to read, and I get really…

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Dancing Through Life

Oh you guys, I feel like such an ass. The other day I mentioned that cancer bloggers seem to want to reach out, and really help others, effectively implying that people who have cancer and don’t blog don’t have the desire to help others. What an idiot! Obviously that’s not the case. People reach out, or help out in different ways. Some are communicators, others are fund-raisers (I love a good play on words), some are connectors of people, etc. Some, of course, are barely hanging in there and just need to focus on themselves to survive. And that’s exactly what they should be doing. You learn quickly upon diagnosis that no one is going to save you, but you. So in order to help others, you have to put yourself first. Good god I am a fabulous foot-puter-in-mouther. With the bloggers from this past group in NBTS I found that correlation, of wanting to help other cancer fighters, but I didn’t mean to isolate everyone else. That’s been bothering me since I posted. I recognize that we all have our ways of contributing in this world.  I hate it when I say stupid stuff, it makes me feel like a complete moron. So please forgive me. On another note, my bud Jess was in town this weekend, the one who shaved her head with me when I was diagnosed. The one who immediately flew from Abu Dhabi to be with me. The one who has seen me at my worst (shaving my legs for me when I was unable, or even wiping for me because I was out of brain surgery and didn’t remember how). Jess came to extend the birthday celebration. This year is seriously chalking up to an epic start! The older we get the more amazing…

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Winking at Fear

Yesterday, I turned a year older. And, it has officially been 4 years, 3 months, and 25 days since I was diagnosed. I have had three brain surgeries. I have tried almost every brain tumor diet on the planet. I have gobbled hundreds of thousands of pills. I have researched. I have exercised. I have meditated. I’ve dodged seizures; I have endured them. They’ve injected shot after shot to boost my immune system, and to fight my tumor. I’ve done the high dose IV drips. I drop venom in my nose, and I swish it in my mouth. I’ve traveled the country, and around the world, to meet with doctors for second opinions, for surgeries, and treatments. All that, and so much more, and yet I feel like an imposter, like this isn’t my life. I got the email yesterday, a great birthday surprise, that I am included with five other bloggers to be posted on the National Brain Tumor Society website. As I read the other posts I felt like a voyeur, like I didn’t belong. It’s confusing because I relate to so many of the things that they wrote, yet, with others I have no experience: radiation, chemo. It’s as if they were long lost family members; we had never met, but somehow I recognized myself in their faces. I loved the variation of stories, of perspectives, of journeys. The voices, although different, carried similar threads of hope, fear, frustration, gratitude, and determination. Everyone had gone through a lot, whether it had been surgery, or treatments, or a combination. But some of these fighters truly astound me with what they are conquering, what they’re capable of enduring. I read the blogs yesterday but I keep coming back to reread them, trying to soak it all in. When I…

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New Blog Page

Hey Guys, I’ve been working on this page for a bit. I’m trying to make it easier for tumor fighters to navigate my blog, and the tumor world. I’m pulling essential information to the front page of the blog so that newly diagnosed/newly recurrent tumor fighters don’t have to sift through all of the posts to get pointers. I’ve copied and pasted my list below. If any of you tumor fighters (or anyone in general) have suggestions, I would really appreciate it. I know that I wish I would have had this information when I was originally diagnosed, it would have saved me a lot of trouble, headache, and disappointment. That’s what I’m trying to prevent for others. What to Know About Brain Surgeries This is a list-in-progress of things I’ve learned throughout the past few years of fighting brain tumors (feel free to add suggestions in the comments section): You want a neurosurgeon/oncologist that is incredibly familiar with your specific diagnosis (subtype of tumor, molecular abnormalities, etc.).  You want a neurosurgeon that performs 300+ brain tumor resections a year. You want a neurosurgeon that is actively involved in clinical trials for your specific diagnosis/pathology.  Don’t be afraid to email doctors, or tumor fighters with websites/blogs to ask questions. Especially if you find a promising clinical trial, look for the lead doctor’s name and seek them out and ask questions. Doctors that are conducting clinical trials are very passionate about their work and are happy to help. After your initial MRI (with diagnosis) but before your surgery, your doctors should require a fMRI to make sure that your tumor isn’t located in a delicate area of your brain. What is a fMRI? Click for information. If your tumor is located in a tricky area, the doctors may request a partially…

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