Wednesday, February 26, 2014

And I Still I Smile

It's hard to explain, but my brain is having a very hard time. It's issues with word finding, writing (transposing letters, omitting words), forgetting what I'm doing, bouts of lightheadedness, and organizing thoughts. If I hadn't just gotten good scan results I would believe wholeheartedly that the tumor was growing back for a third time. Of course, these issues have been around since the first brain surgery, however, in the past month and a half it has been increasingly worse. I've tried naps. I've tried cutting back on communication (to rest the brain). I've cut back on activities. I've fiddled with my diet. I've analyzed any changes that may be the culprit. I've discussed it with Dan at length, multiple times, to no avail. I'm just beat. So tired. All the time.

I'm used to being exhausted, but when my brain doesn't work properly it's confusing, distracting, scary, and most of all disheartening. For over a month I have felt trapped in a brain that has gone rogue. I have little control. I can't make it do what I need it to do. I'm just along for the ride, terrified in the passenger seat.

I try to push through, to shower, to create a meal, to do dishes, to pick up the house, each task a triumph. A success. That's what I'm diminished back to, back to the months after surgeries. I keep finding myself in the kitchen, knowing I was washing dishes, but I'm looking at the dirty dishes confused as to what to do with them. I know I need something to do whatever it was I was going to do but I'm lost. I'm confused. I stop. I go back to the couch to rest. I think, and think, and then I wonder, was it a sponge I needed? Is that why I couldn't finish my task? But I don't go back. I know my brain is too exhausted to endure more of the riddle that is my life.

I just want to get back to exercising, to reading and laughing (okay, I'm still laughing), to doing normal tasks without the fear of a brain going haywire. There is such a beauty in completion. The joy of accomplishing things, it doesn't matter if they're little or large, is energizing.

Just talking wears me out. And that used to be one of my favorite things. I hope this is just a phase. That's why I haven't said anything. Holding on to hope that it will get better. In the meantime, please forgive my lack of communication. I have so many posts that I need to write about, like the Oscar Party Fundraiser this Sunday, or the Hoedown Fundraiser on March 22nd the evening of the Run Ladies Run. I'm just tired, so tired, but my brain is angry, and it's taking prisoners. I feel like it might not be long before I'm swallowed whole. 

My sister-in-law Courtney is amazing. No Joke. She is spearheading all of these amazing events, and I am so grateful. I just did the math for some paperwork, and in 2013 just in newcastle disease virus shots and subsequent travel, I spent upwards of $78,500. I hadn't wanted to even look at the numbers, but I had to, and man was I shocked. I haven't added all the other costs of supplements, medications, medical bills, MRI's and radiology reports. It's all too ugly to obsess over. To even acknowledge. These days it's more important to figure out why I can't get my hand to work to unbutton my jeans to go potty. What changed?

Do these new changes effect my life? Clearly. Does it stop me? No. Does it slow me down? Of course. But I keep finding ways to smile. Here are some pictures from the past week.

Valentine Tulips From My Love

Pad Thai From Scratch For Danny: A Major Feat. Success!

Free Parts For The Chandelier I Want To Make

4 comments:

  1. I feel for you Jess. Brain fog from cancer treatment and/or surgery can be difficult and frustrating at how long it takes to overcome it. My children had a hard time dealing with my brain fog at first and then once they understood what and why it was happening were able to deal with me and my brain fog. It did take time to get better, so have patience. Your family and friends understand what you are going through and are a lot more forgiving and far more flexible than you may give them credit for. We expect far more our of ourselves than others do. You are an intelligent person and expect a lot out of yourself. I think that you are doing a great job and I am sure that your family and friends love you just as much -with or without a little brain fog. Best wishes,
    Jim

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  2. So really you are used to being supergirl, and now you are on the same plain as the rest of us! I feel like you are so amazing, and resilient, this will pass. It is a lesson in patience (not my best trait!) I agree with the above post, right on. When I am overwhelmed I find myself turning to prayer, needing guidance, seeking answers, sometimes just looking for some comfort. I pray this day for all these things for you sweet girl. Look in the mirror, that is one of God's great miracles straring back at you!!! Blessings<3

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  3. Sometimes I can't unbutton my pants to go pee but that is for a different reason ;)

    You are right, Courtney is amazing and loves the heck out of you Jess. She has been smiling from ear to ear while procuring items for this upcoming fun-raiser and we are all more than happy to attend, celebrate, donate and toast to you this Sunday.
    ~Erin

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  4. Hi Jess, Is it possible that the Newcastle virus or venom are having a negative effect? Instead of attacking tumor they are attacking normal brain? Just wondering and worried about your symptoms. Love Katie

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