Monthly Archives

December 2013

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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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