Thursday, June 4, 2015

Go and Go Faster

Evening, friends!

Sorry for the break on the blog, I've been assessing and working on my seizure issues. What I'm learning is that the less tumor work, and less technology I use, the fewer the seizures. It's great news - to isolate the issue - and at the same time it sucks. I am not the woman I once was. I keep trying to be a woman who can do it all, chew gum, rub her belly, and walk, but I can't. I try and try then I trip and seize. It's an almost impossible lesson to learn.

It is very hard to slow down, to cut back on tumor research. I'm still keeping up with the Cancer Compass thread which is profoundly informational, with updates daily. I'm still getting my updates from Al Musella's website, and still looking into studies every day or two. I can't help it, I get curious, something will pop in my head and I'll have to find answers. And I'm still answering brain tumor emails, still helping those with recurrences, those newly diagnosed, and general questions. I'm just not actively trying to solicit patients to help like I had been. As you guys know, I don't do this for money, I don't get paid, I'm just trying to pay it forward.

One thing that I hate about brain cancer, which is specific to our group, is the freaking seizures. As if it wasn't enough to go through everything: the brain surgeries, the brain damage, the speech therapy, physical therapy, the recurrences, the research and constant fear of recurrence. Above all that, we get trapped in our bodies unable to trust our brains and our being. When you're epileptic, your body is not your own. When you're epileptic, you live in fear. When you're epileptic you can't just push through, when tired. That is what I somehow can't seem to imprint on my mind. My body is not my own, my brain is not my own. I can not overwork it. I can not push though. That's a tough lesson for a girl who has two speeds, "go" and "go faster (preferably with coffee)".

Anyway, I just had to give you guys that update since I've been MIA for several weeks. The good part? I joined a morning walking group, which completely feeds my soul. I've also joined a Wednesday track running group (although in a couple of weeks we will switch to trails), which keeps me laughing, and sweating, and alive. I had missed all of the human interaction. I'm a social being that needs face to face smiles, and hugs, and high fives, and slaps on the back. As you know, if I'm having seizures, I get stuck, isolated at home. By cutting back, I'm able to LIVE.

I can either be tethered to a computer, trying to solve the world's problems, and quickly disintegrate, or I can make myself some guidelines to limit my emotional exposure. I wish I wasn't so sensitive, that I didn't worry about people so much, but no matter how much I try, I can't stop it. When I talk to these brain tumor patients, trying to help them navigate, I end up not sleeping at night. I am a sponge that absorbs the fear, and anxiety. I don't know how to fix it, and I don't want to stop, and I don't know how to find a balance between the two. On goes the riddle of my life.

Please don't be afraid to contact me with your brain tumor questions. I hate even sharing that it stresses me out because I know people need the help, the information, but I have to be honest at the same time. That's been the whole point of the blog is to have place for me to vent, and explore, and be a resource for others. I'll figure out a way to help and not run myself into the ground, I promise.

A triumph this afternoon, my first cherry tomato of the season has joined the world!

With love.


  1. You are so very loved by me!!!

    1. I'm loving you right back. How's that book treating you? Hopefully well. Thinking of you and your mom every single day. xoxoxox

  2. Don't beat yourself up...vent away! You are truly amazing! But don't forget...if this isn't about you...where will we be? I'll tell you....LOST!!!!! You inspire us all! 🍅

    1. Laine I love you!!! You are a beacon of sunlight!!! XOXO


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