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.

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 between a complete resection and a partial is most definitely a no-brainer. No pun intended. You always want to get the bulk, or all of the tumor out, and sometimes one surgeon can get it all out when most other surgeons aren't comfortable attempting. Anyway, I won't go into all of it here, but just know that there are always tricks, and things to know, from people that have gone before us. I have learned so much from others, and all I want to do is make other tumor fighter's lives easier. Due to all of the phone consultations, I end up feeling first, energized, then exhausted. I wouldn't change it, though. I guess the only tricky part is that it does make me less able to write on the blog. I can only deal with so much emotionally charged stuff in a day.

The wonderful news, though, is that I don't have much to write about when discussing my tumor. At this point I'm just trying to remain healthy, and focus on helping others navigate this crazy brain tumor world. 

Here's my latest craft project:

Now I just need to change my last name...

And for some of my favorite TX photos:

I heard a quote the other day, "Would you rather be a shooting star or the North Star?" Contradicting in nature. Equally powerful. When I was younger, or more accurately, before the diagnosis, I held the stance that I would rather be a shooting star, an asteroid, a comet. To live life loudly, without abandon, with no regrets. But now, in this life, my tumor life, I yearn for the life of the North Star. I work toward slow and steady, reliable, longevity, dependability. When faced with death, literally, my own mortality, it changes how I view life, what I cherish. I don't want to just be Dan's shooting star, a blip, a hot flash. I would give anything to have a long, happy life as Dan's North Star, as he is mine.