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Spreading Wings

Woke up this morning with Dan, and headed to the sleepy town of Oak Harbor. We were headed to Friday Harbor, anyway, so I figured I might as well cut the driving time. (For those of you not familiar, Oak Harbor is up north near FH.) The town was quiet, traffic nice and slow, so I dropped off Dan and headed 1.2 miles by myself to a coffee shop. My first independent driving excursion! I was really nervous, but I stuck in the slow lane, maxing out under 35 mph. I had to keep myself in check, talking myself down from code yellow a few times, happily never hitting a code red. It’s quite overwhelming assessing your surroundings, while floating around in a big metal thing with wheels. All the lights, and movement, all the while trying to navigate to a location I’d never been. I had everything mapped out, gotta love those smart phone mapping systems. By the time I pulled into my parking spot I was ready for a nap, or an oxygen mask. I kept telling myself to breathe. I literally had to continuously remind myself. It was as if my body couldn’t remember. When I had my first seizure, back in 2011, I was driving on a highway just next to a canyon with a river. I started to feel funny, and pulled over. Within seconds I witnessed my first out of body experience with my first Grand Mal, it was wild. Then I blacked out. It was a miracle that I pulled over. It is a miracle I survived. I don’t know how I was able to recognize what I needed to do, but as I was driving today, all by myself, I started questioning if I needed to pull over. I wondered if my…

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Limiting Posts

So fun waking up to snow! Unfortunately, it makes it a bit tricky to get to grandma at Harborview for a visit. Apparently, the buses are on a snow route (whatever that means). I’m sure I can figure it out, though. I’ve been driving, with Dan, lately; been taking us to the gym (bypassing I5), driving to and from the grocery store, even using HWY 99 for three blocks. Even drove at night yesterday. Fastest I’ve driven was 40 miles per hour, but that was back in Friday Harbor where the biggest concern was hitting a deer. I’m having so much fun getting back behind the wheel. I used to be terrified, paralyzed by the fear of hurting someone. But by waiting for over two and a half years, I think I’m ready. Knock on wood, but I haven’t had a seizure since the first week of March. I am so very ready to get back to a normal life, pushing my limits to enjoy more independence. I’m more than ready to focus on things other than my brain tumor. I guess I just got kind of burnt out. Burnt out from talking about myself. I love helping people with their diagnosis, and that will never change, so please never hesitate to contact me – I just get disgusted by talking about myself all the time. I’ve gotten to the point where I feel like writing this blog makes me seem self-important. And that’s embarrassing. I don’t have anything more valuable to say than anyone else. I don’t have any problems that are worse than anyone elses. In fact, I consider myself to be very, very lucky with my diagnosis, and in life. Shoot, I’m chugging along with 3.5 years under my belt. That’s pretty fantastic! I’m surrounded by an…

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Our Sassy Butterfly

Oh man, I fly out at 7:00 am tomorrow morning for the last immunotherapy shot of the year. 2013 has been, very possibly, the most busy twelve months of my life. Certainly, I have never flown so much. This trip snuck up on me. Since Friday, our world has been turned upside down. My 81 year old grandmother, one of my best friends (she lives here in Seattle), was in a horrible car accident on Thursday. The hospital couldn’t track down the family because my parents were getting a new supply of venom – no cell phones, no contact information. No one could get a hold of my aunt either (turns out she has been very ill with pneumonia). Randomly, a social worker at Harborview Medical Center called an old phone number for Courtney, my sister-in-law (it was in my grandma’s old cell phone), and when the woman answered she knew how to get a hold of Kaal & Courtney. The whole story is insane, and impossible to explain without putting your mind into a spin. The main point is that my grandma was in a horrible car accident. The medical team couldn’t get anyone from the family for almost 24 hours. At the scene they had to immediately intubate her. She has a broken collar bone, a lacerated kidney, head lacerations, a split ear (needing several sutures), a deflated aorta, deep bruising on her left hand (causing an inability for her to use it – which is problematic because she’s left handed) and several broken vertebrae. Courtney called Dan and I on Friday night, and we immediately ushered ourselves out of the second Hunger Games movie. It was surreal. It was the first time I actively told Dan that he could be erratic with his driving and that I…

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Changing Directions

Morning. I’ve been taking a much needed technology break. In fact, I even disabled my Facebook (for good – it was not a temporary decision). I feel like I have a deep need to simplify my life. Social media has never, really, made me feel better. It makes me feel voyeuristic, and often awkward. It’s weird how we put the most mundane things out there, thinking it’s somehow important. But my truth is that it ends up making me feel like I’ve wasted a small window of my life while the computer sucks out pieces of me. Pretty dramatic, I know, but whatever. I’m sure it’s humorous for me to even say these things, since I’m a prime example of posting overly personal anecdotes on the blog. I have no retort for that. All I know is that I am feeling like nesting, crafting, cleaning, reading, and flying below the radar. I’d like to continue the blog, and by removing different avenues of energy diversions, it will syphon my efforts, simplifying my life. Now, I have to say that a lot of my friends do all the Facebooking, Instagraming, Tweeting, etc., and they love it. It just isn’t for me. It gives me anxiety. It’s weird, I would have thought, since I’m such a talker, that social media would be a fun outlet for me, but I’ve learned that it just isn’t the case. Clearly, we’re all different. Tomorrow night my parents arrive from another trip to procure the venom. I have also begun taking dichloroacetate (DCA). I’m not taking heavy doses, starting very small at 4 mg/kg body weight. Low grade tumors aren’t very glycolic, but I figure, even if it’s only 10% effective, it can still help me for the times I don’t eat properly. If you’re not…

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Decidedly North

I am delightfully exhausted. Texas was everything we could have dreamed, and more. Since we’ve been home, I’ve been indulging myself by working on craft projects, deep cleaning the home, and just doing whatever I want (which, truthfully, consists of load after load of laundry). There’s only so much time in the day, and by taking time off from the blog I’ve been able to spend my energy on less emotional things like taking the bus to Target. It sounds silly, but just taking a bus and shopping can be very taxing on my body. There was a time when I couldn’t even handle box stores because of the loud sounds, flux of people, and obnoxiously bright florescent lights, it was seizure inducing. This blog has been such an amazing tool. It has helped me process this experience, recover from surgeries by practicing my language and typing skills, and it has brought me friends, both old and new. My biggest joy, however, has been helping consult with brain tumor fighters. On average I talk to 3-5 different people (usually newly diagnosed) over the phone per week. The phone calls range from 1.5 hours to 3 hours. There is so much to know when dealing with the horrible diagnosis of a brain tumor, and I love sharing everything I know. I wish we would have had someone to teach us the ropes, to explain the different types of surgeries, the scans, the difference between a neurosurgeon and a great neurosurgeon. When you’re newly diagnosed you don’t know that there are life changing differences between brain centers. I am very grateful for every person who contacts me about their diagnosis. It makes me feel useful, helpful, that I’m possibly preventing one less complication, or extending their life in some cases. The difference…

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Texas For Thanksgiving

Tomorrow morning, Dan and I will be on an early flight to Fort Worth, Texas. Yay!!! Back in July, you may remember that my MRI scan came up with an area of concern. Dr L and the UCLA team wanted me to fly back to LA for a Dopa PET scan to assess the situation, but I really wanted to give the chlorotoxin some time to do its’ thing. The doctors said it would be fine to wait until my usually scheduled three month MRI, placing all of the testing out until October. In the meantime I was very scared. I felt certain that the area of growth was truly tumor, and at the time the doctors warned me that if it was in fact tumor they would be recommending further treatment (like radiation or chemo). This brings me to one of my life dreams. I’ve never considered creating a “bucket list” or anything of that nature, but there is one thing that I have always wanted to do with Dan: take him to Fort Worth to check out the city, show him where I came into adulthood, and most of all get back to TCU for a football game. The problem is that we’re always on such a short time span. It’s always three months by three months by three months, never knowing if I’m on the cusp of further treatment. Flash back to July, Jobi and her husband visited the NW for her birthday (you’ll remember she’s one of my college roommates). As women do, Jobi and I, later, devised a master plan for Dan and I to visit her turf. I talked to Dan and we decided that even if we were doing chemo we could handle the trip. (The chemo for gliomas is uniformly pills that…

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A Free Range Life

First, I need to share that there is a new link to Astroctyoma Options on the blog (upper left hand corner). The tricky part is that you won’t see it if you typically read the posts on a cell phone. Unfortunately, the blog has a different format that shows up when when accessing it mobile-y. I don’t know how many people read the blog from their phones, and I don’t know how to combat that issue so that everyone can see the links. If you read the blog from a typical computer you will see the link. Also, I would like to share that Stephen worked with his fabulously talented brother to create Astrocytoma Options. Stephen did the verbiage, and his brother Michael did all of the website design. Pretty smart dudes. Michael clearly has an eye for design, and although I’ve never met him or corresponded, after checking out his design website, I immediately fell in love with his honesty, and humor. Not to mention his aesthetic. It looks like he’s currently taking on new clients, feel free to check his design company Free Range Designs. His website is so cool that you’ll enjoy surfing his site even if you aren’t in the market for web design. Actually, he’s so good that it will make you want to have your own website, even if you don’t have anything to promote. He’s that good. On another note I have some super sweet news. I was contacted by a neighbor, here in Green Lake. The gentleman saw the Komo 4 News segment on our dear stolen Buddha, and brought his over. I now have a happy little Buddha to join me on my journey. I am continuously reminded by how wonderful people are. Even just today I had a comment on…

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Clearing Cobwebs

I am having so much fun this morning! I’ve been reading through my buddy’s new website. He’s been working on it for months, and it is FABULOUS. It helps us brain tumor fighters make sense of research studies, explaining things for us non-scientific minded people. I’m over simplifying, of course, but the website is just crazy exciting. It’s so informative, concise, and helpful. My buddy Stephen, with his new breakthrough website, is always helping me understand things. We bounce ideas and theories, it’s a lot of fun. On top of researching, our email conversations often remind me of things that I’ve forgotten. One of the latest, exceedingly exciting helpful details that had skipped my mind, is about diet. I forgot about one of the first research studies I conquered dealing with calorically restricted diets. It dealt specifically with the standard American diet, and the ketogenic diet. It then went into restriction of both and the effect on controlling cancer cell growth/brain tumor growth. I have been constantly beating myself up because I am not capable of staying on the restricted ketogenic diet. Rereading through it, though, reminded me that technically, restricting the standard American diet actually led to lower tumor weights (as opposed to the restricted ketogenic). Of course, the study was conducted with mice – not humans, but that’s mostly how they’re deducing the effectiveness of the KD-R. Here’s a graph from the study, if you click HERE or on the graph itself, you can read the whole thing. Sometimes I get caught up in a concept, forgetting other contradicting info that I’ve read. I feel so relieved to be able to drink my green smoothies in peace, without guilt. All I want to do is make the best decisions for my health, but sometimes all of the info…

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“Set your heart on doing good.” – Buddha

Afternoon folks, thank you for all of the kindness over the Buddha bandits. It seems like everyone googled and found the news piece about the stolen gift, but I’ll insert it at the bottom of the post for those who are hoping I’ll share. I still feel like a goober for this little goofy thing becoming such a big thing. I get the irony of me being upset over a possession – particularly a Buddha, but what can I say, I’m human. Truthfully, I’ll always miss our sweet Buddha, and I did hope that maybe he would come back home to us, but it’s okay that he hasn’t. I do peer over the couch, through the window, and hope to see the back of his head, but oh well. On another note, aside from Buddhagate, Dan, Amy (my high school buddy – and NYC road warrior with me for a shot), and I got the chance to support Movember by running a 5k together on Saturday. It was such a blast! The annual run is called the Mustache Dache, and it raises awareness and funds for men’s health. Our buddy Derrick (who is heavy into Movember), helped us join in. We’ve really been buckling our financial belt straps – or is it boot straps – and when Derrick heard that, he approached us with a comped entrance fee. He’s so great! It was the first race I’ve done in two years, (if I’m remembering correctly), and since I love to run, and I love supporting healthy endeavors, it was truly the most fun I could imagine for a Saturday morning. The whole day was fabulous. Dan and I can’t wait to return again next year with more secure finances (by way of fewer treatments, and less travel to doctors –…

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