Friday, December 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.


  1. I couldn't agree with you more on the social media (yet I still do it) , I always get that feeling I have truly wasted that moment of my life when I am on it. Blogging, seems a bit different, therapeutic perhaps and those that want to read it have to search it out!
    Cheers to having a little break in the food too! Take care and Happy Holidays!

  2. You are making great decisions, I think your brain works very well! What a crazy schedule, you are a rock star for keeping up with the daily goings ons. I know your life seems hard sometimes, but honestly it is a beautiful life, and you are the reason for the beauty! Enjoy every day and all the things that bring you joy, and continue your blog sharing your positive spirit with all of us. Big squishy hug and a high five too!!!

  3. Merry Christmas Jess and Dan
    Praying for you and your family every day. We agree with you 100% on all the social media stuff after trying Facebook for a while, anxiety !!!! Good choices on what is best for you !! Awesome on the run with your friend-what a darling picture !!!! Do the things that bring you joy :-)

  4. Love your choices and love you!! I feel very similar about fb sometimes, yet love it at times too...but I love your blog always and as it is saved in my favorites, I never forget to stay connected to you in the way that you want to share with us. Thank you Jess!



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