Wednesday, April 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.

10 comments:

  1. sorry about the seizures and scar pain, i can't think what would be causing them now, what anti-epilepsy drugs are you on? :( whats your recipe for the kale popsicles??

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    Replies
    1. Hey Ben! I'm not on any anti-seizure meds these days. I tried three and they really messed me up. I've been pretty lucky to only have one seizure every month or so and they are very gentle, as seizures go (a simple partical/focal). They still mess with my brain, and there's aftermath, but nothing like the grand mal which is how my seizures originally presented. Are you on them? If so, what type?

      The popsicle/smoothie recipe is a little bitter. Dan asked for an added orange or second apple for next time. (I love it bitter though, so you could do it either way depending on taste.)

      1 lemon (with peel)
      1/4 lime (with peel)
      4ish cups pf packed kale (you can play with it)
      2 inches ginger root (peel it)
      1 cucumber (English or other - doesn't matter)
      4 stems of celery
      1 green apple (core it)
      1 avocado (pit and peel it)
      As much water as you need to blend without watering it down too much

      The avocado is important in order to get the creamy texture.

      I hope you like it! I think it's actually better as a popsicle than a smoothie.

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  2. Sending you love and comfort Jessica!! You are changing the world my friend! You have changed me!! I have so much admiration for all that you endure, share and process. You are my hero!!
    Maleka

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    Replies
    1. Maleka, you are one of the sweetest people I know. I love you.

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  3. Hi Jessica, I just wanted to let you know that I don't have anywhere near that much pain from my scar, even though I can actually feel the plates and screws under my skin. It obviously hurts if I push on it and sometimes it's uncomfortable to sleep on, I can't let anyone massage my head, which I miss, but I am not in pain otherwise. I do know people who have big problems with the hardware left in their bodies, whether it's their head, back, pelvis or whatever, where calcium deposits form and create problems. There is the option of getting them removed but I don't know if that is an avenue you want to pursue. I don't, but I'm also not having the problems you are. I just wanted you to know that it maybe isn't normal and maybe you don't need to be suffering like this. Love ya,
    Katie

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    Replies
    1. Hey Katie, thanks for the note! I'm so glad you don't have the same pain issue. It all started with my first brain surgery, and it actually made me excited for the second tumor resection. I figured the new hardware would solve the problem. Alas, no such luck. I think it's just one of those lame things. Luckily, there isn't that much bad stuff, so I can easily manage. It's only tricky when I'm grumpy. ;) Very sorry to hear about the seizure. You're down to only one seizure med, is that correct?

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    2. Hi, I weaned off of the clonopin but I'm still on Keppra and Vimpat. I assume I will be on them until I'm seizure free for awhile. Not sure.

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    3. Sounds like things are looking up! Always exciting to wean off a drug ;)

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  4. BTW, I also had a small seizure this week, I think it's the healing process at work because my scans are fine. It is always disconcerting though!

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  5. After my wife's first surgery she used Lyrica, and that worked well for her. However after her second surgery, she was having more discomfort and what she referred to as "nerve ending pain" where her scar was. Her Dr's prescribed a topical compound of Gabapentin/Lidocaine (lipoderm base). It worked wonders! You'll need a prescription and a compounding pharmacy to make it, but I would check it out, she swears by it.

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