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

RLR Medical Fundraiser

Who loves to run? This girl! I am deeply honored to share the news that there is a new fundraiser on Saturday, March 22nd in Friday Harbor that includes a 10k (6.2 mi) and half marathon (13.1 mi) run.

It falls just a couple of days after my immunotherapy shot in New York, but Dan promised he would take me up to the island so that I can run or walk my way through the race. I don't think I'm capable of completing a half marathon, but I'm all about the 10k. If I start to feel sick, or seizure-y, I'll chill out and bow out of the run for the sidelines. (But between you and me, I'm preeeeetty sure I'll be pounding the asphalt until the end.)

I know this note is a little last minute as far as training goes (that's my fault) but if you're around on the island and are interested, please come join us! If you're not a runner, maybe you'd enjoy walking it?

This race by Run Ladies Run is an annual event and this year they are sponsoring me. The proceeds from the race are all going to my medical fund to help me continue my life saving treatments. I am incredibly grateful, and like I said, very, very honored. I stole a picture of the event headmasters, the women who have passion in their sneakers, I hope they don't mind. Look at those beautiful faces! I can't wait to run in their footsteps.

If you are in the running spirit - or know someone who is - please click on the photo to register, or you can register HERE. For full race information, including maps and some bumping tunes (they have a great music selection on their website), click HERE.

And of course, if you could spread the word I would be very grateful. Especially since this is my only social media outlet. :)

Thank you. And I really hope to see you there! Lets make it a running par-tay.

That reminds me, this run is going to be a great celebration, and I'm going to dance my way past those miles because I called UCLA today and they concurred with UW that there is no new tumor growth. I am cleared for another four months. I now have until June to schedule my next MRI. Life is sooooo good. Let's keep this winning streak on track. Cheers to my friends and family and to immunotherapy shots and venom and metformin and hundreds of supplements and weird elixirs and natural whole foods and soft gingersnap cookies. Just kidding, had to throw that in there to see if you were listening.