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October 2014

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October MRI Results

Of course, of course, of course, the day I go to get my MRI results, I have a seizure. (I was at 4.5 months seizure free. DAMN IT.) In fact, not to be outdone, I had two in quite close succession (a window of about 60 minutes. And it took forever to come back down from that short circuit. So stupid. It was humiliating, too. I was in the shower, and started feeling “off”. I got out but was confused. I was walking back and forth in the house trying to figure out what what happening, all the while, curtains are peeled back throughout the house and I’m a drenched cat, totally naked. I couldn’t think to dry off. Or manually get clothes on. Hopefully I didn’t terrify pedestrians walking by. In those moments it’s too difficult to even function. And the more you do the more it spurs increasingly aggressive seizures. So I made my way to the bedroom snatched a phone and hit redial. Lucky my mom answered. All I could say was, “mom, I am alone. I’m having a seizure. It’s worse than normal. It’s going to get bad. I may lose consciousness. Please call Dan to come home.” Then I hung up. Once in bed I couldn’t move, I was paralyzed. I couldn’t feel my right side, then came the painful throbbing. It started in my right arm, and spread up to the brain, then it flushed out from my right hip until my whole pelvis was throbbing in pain. I had never had effects on my pelvis, so that’s a new seizure detail. I also don’t think I’ve ever had two seizures in one day. Not a record I wanted to break. I still made it to the hospital this evening – just before they…

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October MRI Completed

Just finished the MRI. Time in the tube really gets you thinking. To stop myself from worrying (especially when I can feel the contrast dye make its’ way into the tumor cavity which terrifies me) I spent time repeating my mantra, “thank you, thank you, thank you”. I forgave myself for not being able to eat healthy all the time. I forgave myself for not working out enough. I forgave myself for not being perfect. And I spent the rest of the time swollen with gratitude. I am so grateful for this life, this husband, this family – immediate and married into, I’m grateful for our amazing friends. I’m grateful to have a home to live in. I’m grateful that I’m capable of so much, like bending my body at yoga. I’m grateful to be alive, to be here on Earth. I’m grateful all the time, for everything. It’s probably annoying, but it certainly makes me really happy even when life is unsure. I guess the thing I’ve learned recently, perhaps just now as I write this, is that you don’t have to have answers to be happy. You don’t have to have everything be good news, or the best life situation. Just by being grateful, and forgiving myself for my downfalls, my humanness, keeps me happy. What a cool ability, to have control of our minds. 

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Keeping Connected

Do you ever feel like you’re living a movie? I do. And yesterday was the most hilarious illustration of it. I had a doctor’s appointment in Ballard, so for the first time, I packed up my venom and secured it into the basket of my bike. I strapped on my too-tight helmet that I borrowed from my friend Meghan, and I started out on my ride. I had yet to ride on the street, so far I had only ridden at the park under Dan and Emma’s watchful gaze. I wobbled on my squeaky bike, cool breeze on my face, passing block after block. There are probably a billion different ways to get down to Ballard from Green Lake, but being a newbie biker, I decided to punch the address into my Iphone so that she could just give me voice instructions as I peddled. I don’t know if she sensed that I ate carrot cake the night before, but she picked the hardest hill, and since I was distracted sniffing all the sweet air reminding me that it’s jamming season, I didn’t have the opportunity to reroute, and before I knew it I was in serious trouble. Quads were burning, face flushed, a man even stepped out from his landscaping to ask playfully if I was going to make it. I hollered back over my shoulder, “I doubt it, this was a horrible idea!” I caught his big smile, and I pushed harder, lungs on fire. Luckily it was a quiet street so I could eventually wind back and forth like a sedated snake. At the top, from several blocks below I barely heard behind me, “Woo hoo! I knew you could do it!” I tossed a wave, and laughed. I couldn’t help but absorb the charm of living…

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Ethically Ending

How fortuitous is this article? Very fitting considering my most recent post. The article is good, but the video at the end is eye opening, and heart wrenching, and beautiful, and real. These are the things that we must ponder when dealing with cancer. It’s a very dangerous topic because people tend to have polarized, strong opinions about ending your own life, even when you’re terminally ill. I have a lot of emotions wrapped into the debate, but I’m not hard core on either side. My motto, though, in life tends to be, “Who am I to tell someone else what they should or shouldn’t be able to do with their life, and their body.” She’s young. She is newly married, and was trying for kids, then boom, life changed in an instant. I respect her decision. I also don’t think I would have the cojones to swallow those pills. But maybe I would. You never know how you would handle a situation, until you’re in it. One thing is for sure, October 30th is now burned into my mind, and my heart. I will be thinking of Brittany, her husband, and her mother for a long time to come, I can tell.

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Life On My Terms

I had an epiphany last night. It was profound, and yet seems so simple, so clear. I feel like that’s the story of my life. My mantra should be, “Look again, there’s probably something obvious that will make you feel better.” To preface, I have to explain that I don’t sleep well. Actually, I’m a horrible sleeper, one of the worst. Always have been, but of course now post diagnosis it’s worse. If Kevin Hart was judging me, instead of Dancing With The Stars, he would give me a 2 out of 10 (and we all know how easy he scores). Most nights I start to fall asleep, and just as I’m on the cusp of slumber, my right hand goes numb, or tingles, or perhaps it’s my right leg, and I snap out of bed afraid I’m about to have a seizure. Naturally, this is not conducive for sleeping. The other day, I shared how afraid I’ve been about my upcoming MRI. And how much I hate that. I hate being afraid. But what occurred to me last night is that my deep fear isn’t the MRI, but what the MRI could set into motion, like another brain surgery, or radiation or chemo. But, while I analyzed those fears I thought to myself, I’ve already gone against doctor’s wishes, and it has proved to be better for me, both mentally, physically, and even longevity wise. That I have been rogue for a few years with my treatments, and instead of being afraid of what doctors could tell me to do, I’ve done what I want, even though their words hovered, and have permeated my psyche instilling fear. But you know what? I’m the only one who can control the thoughts in my brain. I choose to allow fear in,…

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Venom-ing All Over Town

Sorry I’m not posting much these days. I can’t seem to get my thoughts together, which sucks because I have so many stories. It’s times like this that I can’t help but be afraid that the tumor is growing back. I can’t remember even basic things, let alone important details. It’s ridiculously scary. I realize that stress messes with the mind, and I’ve been doing a lot since Moab, in fact just a couple of days after I got back I flew to NYC for my most recent immunotherapy shot (it was so fun to see you Nate, Miriam, Sol & Larry!!) – but still, it feels different. But maybe it always does. I talked to my dad the other morning (maybe it was even yesterday – it’s all such a blur) and we started the process of scheduling my next MRI which, once approved, should fall on October 25th. I had a total and complete breakdown just scheduling the scan. I’m so scared. And I hate that I’m scared. So I did the only thing I thought to do, I reached out to my FD campers, knowing they would understand. And within moments I was surrounded by love and support. They get it. They know that fear intimately, an ominous cloud, the Grim Reaper hidden in its’ dark folds, red eyes glowing. My brain may be fuzzy, tired, not-connecting, sad, scared, out-of-wack, but I made a deal with my friend “Crush” (Katie) that I was going to make it to the gym every day, Monday through Friday, from now until the MRI. I only have to be there for five minutes (although so far I’ve blown that out of the water). It’s a trick to get me moving, to distract me. A rule to get me out of the…

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