Thursday, April 27, 2017

Seven Years Already?

Yesterday was two months post surgery, a whopping sixty days. How is that possible? It feels like forever.

Major accomplishments include tying my shoes, putting earrings on (first time took 45 min, but I didn't give up), and most recently learning how to use scissor - that was two days ago. Still trying to master singing the alphabet, and handwritten word, among other triumphs.

I am stubborn, and continue to feed myself, and have dabbled with some makeup incidents. Needless to say, we had to get a new stain remover - we temporary brought in the big guns - for our carpet, all my clothes, and the wall. Oops.

I'm exhausted every day, but that makes sense, I'm recovering from brain surgery. (Even when I say it in my head, it doesn't seem real.) 

I stopped getting on to social media weeks ago (but am planning on posting this). I'm horrible about texting, emailing, and all forms of communication. I just don't have the energy. I really appreciate your understanding. 

On a side note for brain surgery friends, have you ever had a lymph node in the neck swell up after your craniotomy? We've been tracking one for over a month. It's hard, and not painful. It's about the size of a peach bit. My surgeon says that if it doesn't go away, or if it gets bigger, I need to get it checked out. Boo. I've never had this happen. I'm hoping it's a random immune response, but it is also scary. 

With all this stuff going on, trying to recover, and monitoring that blob in my neck. I'm just focusing on baby steps. And breathing. And books on tape. And not gripping my fork like Encino Man

Fun Fact: Today 7 years ago, I had my first brain tumor resection! (And now I'm four deep!)

I really look forward to feeling capable of daily life. And writing my own name. For now, I think I'll go take a little nap.

Another favorite milestone was when Dan cut my hair for me last week.
He even added in some layers. Ha! 

Sunday, April 2, 2017

Truely Home

We arrived home a few days ago, and damn if I didn't sorely underestimate the transition!

The area where they resected the brain tumor damaged my sense of space, and how I perceive my body in my environment. That means that my right side of my body feels grossly, over or under estimated, depending on the moment. 

It's wild, but I see half of my body like a funhouse mirror, eerily distorted. Most of the time I pretend it isn't happening, because it's preeeetty weird. Fortunately for me, it was pretty easy to remain unaware while recovering, because although my eyesight is fine, the perception complication allowed me rarely notice my right side. While in Malibu, my environment was brand new, so I had no reference points to work with. 

It works a little like this, I don't see/perceive/feel the right side of my body, except for the rare when times I'm stimulated by a shock (walking into something), being startled (new stimuli usually during a perceived threat), or if I'm focusing intently (which somehow demands an act of coordination).

Moving home forced me to take stock of my reality, and with that, the oddities in my brain.

Traveling wasn't as bad as it could have been, as far as pain, movement, or altitude, but surprisingly, taking stock our home was rough. I can only liken it to what waking up from a coma could feel like. I didn't recognize our things, or where our things went. The sights, the sounds, the smells, sensations, were all foreign. I am relearning my own home. From the hight of our bed, to analyzing where I might find my closet, how to flush the toilet, turn on water, open a window, find a cup, or find a blanket. With all that necessary exploration comes a lot of thinking/analyzation and that brings a whole new level of exhaustion and neural pain. It's exciting to push, and grow, but it's damn exhausting too. I love having more challenges, to continue to feel alive, that's for sure, but I didn't anticipate this level remapping,

I'm taking things slowly, not taking guests per Dan's request. It continues to be a challenge to adjust to each step of our life and all the nuances. It feels like I'm living in my own choose your adventure book, blended with a sci-movie, and it's pretty far outside my own capacity to comprehend. I'm fascinated with what's happening in my brain, and body. I'm watching my writing rapidly eclipse my verbal capacity, which is exciting because it shows clear progress, but also hints that I might need to start considering some speech, cognitive, physical and occupational therapy so that I don't leave other areas of my brain behind.

We are down to pills every four hours, and the dosing is less and less. I'm shocked by the amount of pain this requires to endure, then I'm reminded by what my brain is trying process, and relearn and heal. Then it somehow makes sense. It's all part of the process.  

Life requires so much to process that I'm unable to communicate the same way that I can post, so thank you for being patient with me. I don't email, or text, or call, because it's still too much. In fact, this has taken three days for me to complete, but it's worth it. To express myself is such a powerful gift! 

I'm choosing to remain calm, to focus on what I can control, which is to be kind to myself, and to take Dan's lead. Resting, and patience, are paramount, and feel sloth-like and boring, but realistically I am aware that I have some major limitations. I believe these limitations won't effect me forever, so it's not that big of a deal, but I also don't want to go backward by overdoing things. My bigger drive is not making Dan's life harder. Every choice has a consequence, and he is the one having to pick up the pieces. Sometimes quite literally. 

Thank you for continuing to travel this journey with me! Your continued support, your love, your encouragement is absolutely integral. You guys lift me up, make me feel strong, and capable. You know just how to encourage me, make me laugh, and say just the right the things when I need them the most. I appreciate you all very, very much!

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