Monthly Archives

September 2014

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The Butterfly Effect

Holy shit I have been lonesome. I don’t normally swear on here, figuring I can probably illustrate pretty well without, but, good God, I had no idea how lacking my life was until I went to camp and met other cancer fighters and survivors in person. Until I bonded face to face; until I spent time laughing about our stories; until I realized that although we have different battles, we’re essentially the same. We have the same fears, the same trials, the same macabre humor, the same fighting spirit, the same heart and the same soul. I have been on this hamster wheel of surgeries, and treatments, and applications of treatments, and with that I’ve been isolated to our house for well over a few years. Obviously, I get out (I just walked four blocks to the grocery store, in fact), but it’s always limited, always within time constraints of the chlorotoxin. I’ve been conditioned to fear seizures, and seizure triggers (heat, sun, noise, thirst, hunger, emotional stress, physical stress), leading me to micromanage my life to an exhausting minutia. I just want to live, and explore, and laugh, and for the first time in four and a half years, in Moab Utah, I felt normal. I felt completely happy, blissful. They got me. They told their stories that I knew in my bones. I felt it. We were the same. I do a great job of recognizing the beauty in life. In every single moment I am tangibly grateful for each breath, each laugh. I have a lot of fun noticing the little details each day (the fresh breeze on a new soft leaf, the color of the sky when I peek out of our bedroom window) but I am not living the way I want to live. Not…

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Moab in Pictures

Still at cancer camp – it’s even better than I could have imagined! I keep conquering big walls, looking down, and thinking to myself, “Yep, I just did that.”  And I couldn’t have done it without my new friends. My tribe. I’m living in an alternative universe of the most amazing breed of people. How have I not reached out (in person) to this community before? I’ve really been missing out.

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Daily Routine Revamp

Thank you friends, for your patience; I finally updated my Daily Routine on the blog! People ask me, quite often, what my supplements are, what I dose, how often, the reasoning, the effects, etc. and it’s such an exhaustive schedule that I’ve been working on this for a few weeks. Maybe even months, it blurs.  In our house we have more supplements than food 🙂 I’ve hesitated about naming labels, and giving all of this information because obviously, I’m not a doctor, or a nutritionist. I paid a lot for most of my information, for example my spendy nutritionist, and I feel bad bypassing professionals that I respect. I realize it may interfere with their livelihood. I also don’t want to endorse a specific brand, and in the past, I felt that naming my brands in turn was endorsing. But whatever, I’ve done so much freaking research that I might as well share and save my tumor buddies the trouble. This brain tumor life is incredibly expensive. This isn’t a hobby. This isn’t a business. This is our lives – it’s literally about surviving – and if I can help people, I’m going to do it.Here’s the exact page copied below, with the disclaimer and all. Please let me know if you have any questions, or comments. The scheduling is based directly around my chlorotoxin, that’s why it’s all timed out. Some of the pills are specifically dosed apart, and similarly, together for maximum efficacy. Others are taken in the morning or around noon because they induce energy, and have to work out of my system so I can sleep at night. Remember that many of these supplements are based on my regular blood work, so don’t take it as a list of what you should personally do (although *wink…

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Joining My Herd

My lovely, timid, garden finally produced her first cucumber! (I’m pretty sure it’s my fault for under-watering.) There is nothing more delicious than snipping a warmed-by-the-sun cucumber, and taking a big ole bite. The flesh was soft, giving way to a watery crispness. Yum! I have some pretty exciting news. Remember when I mentioned that this year, my 34th, would be a time of challenges? That I was redefining fear in my life? Well, on Sunday I am flying out to Moab, Utah for a week of rock climbing. It’s through a program named First Descents. I applied expecting to hopefully make it into a program for next year, but just a few weeks ago I received an email about a cancellation so I quickly started jumping through hoops. The program I was trying to get into was surfing in Santa Barbara, and I was stoked, but after my physical and final documents made it to their medical team, it was decided that because of my history of seizures I’m not allowed in their water programs; I at least have to be seizure free for a year. (There goes the river kayaking, too!) But, as a very kind gesture, they sneaked me into a rock climbing program instead. I’m so nervous.Oh ya, did I mention that all the attendees are cancer fighters and survivors?!? That’s the part I’m most excited about. I’ve written about my isolation before, about how hard it can be when you’re fighting tumors or cancer, that you can’t relate on the same level with your friends, or even your family.“First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing…

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Out Living

Oh I have been laughing at myself. Me and my big book. Me talking about my fancy new brain. The second I started typing about my progress, Doubt started creeping in. He’s such a jerk, that Doubt. I’m macabre in nature, and can not help but wonder if this next MRI in October will prove to be the one where Hermie shows back up. Life is too good. It’s going so well. When Doubt spoke up, I literally laughed out loud. The irony of life. You never know when your luck will end. All I can do is enjoy each day, seek out the big books, strive to be happy, push boundaries. This past weekend Dan and I went camping in north central Washington. We brought friends, new and old. My cell phone quickly drained as we drove closer, and as I unplugged from the rest of the world, my vision became clearer, the sunshine brighter, the river much more blue. I took deep breaths, inhaling the dry wind. I allowed the breeze to ribbon around my neck, sparking private smiles. I’m not much for camping; I’m a girl somewhat tethered to electricity, to amenities. But, man, did I enjoy myself. I swam and swam, lap after lap, in the river. I goofed off with the kids. I sneaked away to read my books. I went to bed early with the sun, and rose with the quail as the sky pinkened. I slept hard, hard on the hard ground. I have bruises on my hips, battle scars. I look at them with pride. It reminds me that this is my year of challenges, of getting out of my comfort zone. The bruises remind me that I’m alive, that I’m out there living. Where did the girls go!? Dan caught us…

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