Dec 16, 2013

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 wouldn't care if he got a ticket. My grams is one of the lights of my life, we talk on the phone for hours all the time, I love spending time with her, I admire her, I feel so fortunate to have her in my life. She's a sassy, naughty, hilarious, fiercely independent, kind, often bordering inappropriate (in the best way), little social butterfly. She is my girl, and the thought of her being in a hospital bed with no one to hold her hand makes me ill.

By the time the social worker got a hold of anyone in our family, the doctors had already been forced to make an executive decision for a 8-9 hour spinal surgery. When Dan and I arrived, Grams was still in surgery, so we waited, and waited. We were fortunate enough to be able to see her after she was transferred into her Surgical ICU room. In the meantime, Kaal (my brother), hopped on the first ferry out of Friday Harbor and headed to join us. For the next 24 hours, the only people in our family that we could reach were the four grandchildren. Within the next several hours, our cousins Chris and Matt had driven over from Ellensburg. After checking in on Grandma, the boys drove an hour to find my aunt (that's how we found out that she was sick, explaining the inability to reach her). They also helped track down the impounded car. I've never been more proud of my cousins, and brother.

It was difficult seeing my grandmother in such a battered state, but surprisingly, I held it together. I keep fielding compliments from Dan about my capabilities during this crazy whirlwind, which makes me feel pretty damn good. Truthfully, I'm just as surprised as everyone else. :) I'm a self proclaimed wuss when it comes to blood, broken bones, etc., so I'm very excited to learn that I am actually quite good in emergencies. I've been very fortunate that my only experience with hospitals has been as a patient - and as you all know, it has been extensive. I guess it would make sense that I would know a good deal about the necessary questions to ask, and how to handle things.

Happily, my parents came back to the states on Sunday morning at 1:00 am. I guess I should have mentioned this earlier, but this is my only grandparent. It's my mother's mother. They are intensely close. In fact, the women in our family are a very tight knit group. My mom is relieved to be back, to see her mother, and of course to be able to take care of all the finite details. I feel awful about my grandma's accident, and her pain, but I also feel terrible that my mother is just getting back from a stressful trip and to hit the ground running is a huge strain on her. She's handling it famously, though, I do have to throw that out there. Grams is still intubated, still in the Surgical ICU at Harborview. She has a long, long road ahead of her, and guaranteed we will be with her either in spirit, or just beside her as she heals.

It's nice to have mom and dad home, and safe, and I appreciate that they can be around to help Grams while I'm gone in NYC. I'm looking forward to getting back Wednesday night, and heading back to Harborview on either Thursday or Friday. (Depends on when I can convince Dan to agree I'm rested enough.) I've already decided to pack my Kindle with a billion books loaded on it, and my little notebook computer (just in case I need to handle things); I'm going to post up in a chair in her room. I'm bringing distractions so that I don't bother Grammie. With the breathing tube, she keeps getting agitated and trying to talk, which in turn causes coughing fits. My goal is to just chill, and be there. I remember really enjoying quiet company when I was in the hospital. Sometimes, it's just nice to know you're not alone.

Spring 2012

Dec 13, 2013

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 familiar with DCA, I recommend doing a search for University of Alberta and Dr Evengelos Michelakis. I haven't been eating healthily these days, probably for weeks. In fact, I ate pizza last night. Delicious. I have no self control these days. I just need to be human sometimes, to not have to over analyze, not have to measure, and time, and schedule all of my pills, and venom applications. It's nice to be able to just live. People probably can't quite absorb my usual routine, it's nuts. To live like that is exhausting. Just as a refresher, this is what I'm supposed to be doing each day.....


At least my sweet Jess Abu came last weekend. We had a glorious run around Lake Union in the 22 degree sunshine. She was never a runner before, but in the past year or so she caught the bug. Running is one of my favorite things, probably tied with reading, so to be able to run with a friend is truly the most fun I could have. My sweet buddy is living apart from her husband, who is still residing in Abu Dhabi, as she is completing her nursing degree at John Hopkins in Maryland. Jess and I met back in Texas, she also went to TCU. Jess, having walked through this brain tumor journey with me (you'll remember she shaved her head with me when I was first diagnosed), decided to become a nurse after finding her passion to help others, with me; I was her first patient! Humbling to think that my diagnosis changed her career. It's definitely amazing, and it inspires me. She inspires me. It makes me think big, to remember that life is what you make of it. To keep dreaming. To continue to strive toward your goals. To not be afraid of a change in direction.

Here's a picture of us in front of our little home, just before our seven mile run. It was a spectacular day. Days like that are what I live for.