Apr 23, 2014

The Counterintuitiveness of Cancer

Morning. Been a busy few weeks. Mostly good, but a bit of bad. I had another seizure last week. Damn it. Stupid. It makes me sad to not be in control of my brain, and my body. It's very foreign. I don't think I'll ever get used to it. And each time it happens, I still never expect it to happen again. I'm always hopeful that my mind will recover from all of the damage, from all of those lifesavingly intrusive fingers that have probed deep in my brain.

I. Am. Sick. Of. Seizures. And scars. My scar hurts. Badly. I don't normally talk about it, but it's awful, and there is nothing that can be done. It just comes with the territory. The only solution doctors have given me is Botox shots into my skull area, and there is absolutely no way I'm doing that. There have been clusters of nerves forming around the screws where they re-attached the bone, and it hurts to the touch, sometimes throbbing incessantly. And sleeping has become tricky. I dream of an air bubble that can support my head without touching anything. Sounds fluffy, and cozy, and sleep supporting. Of all the problems to have, I realize this is minute, but regardless, it sucks. One good thing is that my girlfriends keep complementing me on my bouncy, full bodied hair. The funny thing is that it's the scar, and the cutting of the hair follicles that caused the regrowth to point almost directly up from the scar. It's like anti-gravity hair. Little victories.



Sometimes the pain is such that I literally feel nauseous. That what today's face is giving. Just off my fingertips is a mass of nerve endings. Basically a fat nub, with irregularities, and some divots. Lately, I find that most days I can't even eat until afternoon because I feel sick. I guess it can be a nice diet. (Stop panicking mom.) To distract myself this morning, I put make-up on. Not a daily occurrence (or weekly for that matter), but I've talked about it before, there's something about tricking yourself into feeling good by making yourself look better. Kind of like smiling yourself into happiness, which, for me, works every time. 

Enough complaining, I have fun news. I harvested my first kale for a batch of popsicles and smoothies! How cool is it that I can grow some of my own stuff!?! I just purchased a popsicle making set from PCC the other day (what took me so long!?!), and I've been munching on them ever since. I am addicted. Even when I'm freezing. I just toss another layer on, even gloves when necessary, then I pop one out and wander around the yard checking out all of my little seeds poking out of the soil. My nasturtiums, sweet peas, giant allium, lupine, cosmos, and my dahlia tubers are peaking out. I even had to throw a batch of broccoli sprouts out (they were stinky) a few weeks ago and every single one of them took to the soil so I have somewhere around a hundred broccoli plants. Woops. Gotta be careful where you drop seeds and sprouts in Seattle in spring, cause pretty much everything grows.


 




The whole seizure thing is frustrating because they happen when I over exert, step outside my normal routine and push my boundaries. It's confusing because I feel incredibly capable. I would love to have a career, and be more challenged, intellectually, but the reality is that my brain literally shuts down when I overwork it. And it doesn't even take much. But I'm so curious about life, and I love to theorize, and explore, and learn, but instead of having a career, I'm stuck taking it easy. I'm so sick of hearing the term "take it easy" or "rest" or "don't push yourself" - I'm pretty sure no one ever made major contributions to this world by silencing their brain which is exactly what everyone keeps wanting me to do. I feel like a lazy, unaccomplished hamster stuck on an isolated little wheel at times. It is counterintuitive to work on quieting the brain, to lessen mental challenges, or to essentially numb my mind.

Okay, maybe my nerve nubs are making me a little cranky. I still can't run until the chest heals from the little surgery, that's probably why I'm irritable. Jess needs a run. Rah. So grumpy. Clearly, I should head out for a walk around the lake with Emma to check out the baby ducklings. They've hatched! I forgot to mention that. Best time of year. Those little fuzzy nuggets melt my heart. I'm outa here.

Apr 13, 2014

Four More Years

Today is my four year anniversary from diagnosis. We have endured so much, our mental and physical strength have been tested. We've had three brain surgeries. We've moved three times. We've re-learned how to read, and walk, and run. We re-learned how to write and use utensils. We expanded our vocabulary. We've lost the ability to drive, then earned our way back behind the wheel. We've had adventures, completed races, tried every brain tumor diet on the planet, researched and gone to the edge of our limits. We've traveled across the country, even the world, to seek the best treatment. And through it all, I can't help but enjoy every moment (even the tough times). The longer I'm alive, the more grateful I am. It's exponential. I've heard new parents say that they couldn't even anticipate how much they love their new child, and that's how I feel about life. Every day my heart swells with gratitude. I love it here. I love my life. 

This weekend Danny surprised me with several fun things. My favorite was a cat video festival. I laughed so hard that I cried. For about an hour. Anything that can make you cry in joy is a great thing. 



Of course we got out to celebrate our muscles, and legs, and strength, and crazy ability to overcome the effects from the first brain surgery. I can't believe that they told me I probably wouldn't jog/run again. Fooled you guys. Ha!



Dan surprised me by setting up our patio stuff so that I could read my book in our triangle park. I can't believe that spot used to be dirt. You can see Emma's outline under the umbrella toward the back of the trough garden. She's a big fan (left side).


You guys, I'm so happy to be here. I'm so happy to wipe the crusties out of my eyes each morning. I'm so happy to do my chores, to try a new recipe, to have the fortune to run and jump into Dan's arms, and call my parents just to say "hi". Thank you for joining me on this journey. There are lots of statistics out there, but I remember reading one in my first year out. It said that a person my age, with my type of tumor, had a life expectancy of 4.5 years. Statistics used to really scare me. I didn't know what to expect, how quickly I could deteriorate. Now, I know that life isn't about statistics, or where you fall on a bell curve. Life is about how you feel, and how much joy you experience in each moment. It's about throwing numbers, and expectations, out the window, and just going for it.