Oh you guys, it's almost here, we should know tomorrow about whether or not UCLA believes I'm "stable" or whether they'll want me to fly down for another Dopa PET. This is such a weird life, just saying those words. Do you ever find yourself stopping your gait, turning your chin up to face the sky, and just smiling with pure joy about how magical life is? I can't explain it that in this moment, this moment of uncertainty about the direction of my life, I find it amazing how deeply my soul is constantly overflowing with gratitude, and happiness, and wonderment. Half the time I just laugh at myself, at how annoyingly happy I am. It's absolutely ridiculous, yet I love it because I know what the alternative would be. I'm still logical, and analytical, and I still have bad days, or bad moments, but somehow I have a serious constant influx of endorphins.
Even though I can't really explain it, I do know that this inner joy, this ability to find silver linings in even the most dull, dark places, is the biggest gift the world has given me. I wish it was something I could bottle, wrap with a bow, and give as gifts. I hadn't really thought about whether or not my attitude is "normal" for a person with my diagnosis until I kept getting private emails from patient's families and friends, from people worried about brain tumor fighters who want to give up, are depressed, or are riddled with grief. Some have more progressive disease, others have less, but ultimately it doesn't matter how serious a situation is, because the power comes from whether or not it debilitates that person.
It hurts me physically when I hear each story, because I know that there is nothing I can do. I try to share my story, or give tips on how I trick myself into being happy even when I'm scared, but ultimately, happiness will always come from within. No one else can fix it. I've had my share of terrible times, and of course I've already had one recurrence, but instead of that overwhelming me, or derailing me, I used it to get stronger, to encourage myself. I used it as ammo. It's those silver linings that keep you going, that trick you into trying. Like this morning, I fried up two eggs for breakfast, and just the little detail of using my mom's old orange enameled cast iron skillet - her favorite, that she passed down - reminded me all about what my mom has given me, everything she has done, and continues to do. I think about the last time she hugged me, the last time she and I laughed together. In a series of seconds I'm filled with love, and it's escalating, it's like a catapult. I'm engulfed in gratefulness, for my life, for the gift of resilience, for the gift to be here on Earth, for the gift to experience all of this beauty, and love. It's easy for me to be happy, it's a place I go to often, I know the path by heart.
Was I always this way? Was it always this easy? No, it hasn't been. I've been depressed before - even needing anti-depressants, but it was long before diagnosis. But from the moment I was slapped in the face with the news of my brain tumor, life instantly became "real" and I internalized the fact that this isn't a trial run. This is it. This is all we've got. We've got this one life, and in any moment we can decide how we choose to interpret what's happening around us. We have the choice to be whomever we want to be. And we can choose how to best handle each situation. Those facts, the facts that we have great control over how we view the world gives me great strength. It flipped a switch in me, and I am so glad it did. Now I just want to love people, and laugh, and have great conversations, and hug people, and help others in any way that I can. (God, am I just obnoxious?)
I don't know why I'm so fortunate in life, or why I'm still here - a lucky one. I don't know how I became so blessed with all the wonderful people in my life, but I don't take it for granted for a single second. I know it can all be taken away in an instant.
Okay, I'm off to work more on an art piece for friend....
Nov 6, 2014
Flipping The Switch
Terms:
attitude,
brain cancer,
recurrence,
tumor
Nov 4, 2014
Surprise!
Who is the sweetheart that sent this package?! It didn't come with a note....
Regardless, THANK YOU!!!! :) What a wonderful thing to do!
Nov 2, 2014
WPIG Annual Art Auction
Good Evening! Thank you for all of the kindness, and patience as always during my seizure hiatus. You guys are all so wonderful!!
Seizures are down; I'm doing good. The other day, you might notice, I created a new box in the upper right hand corner of the blog. It tracks my progress avoiding attacks (seizure attacks, not maintenance man attacks - ha!). As Dan would say, I always have to have a competition. I love to see if I can break my own records. It's really just a mind game, a distraction. And, when you break your records, you have something to celebrate. :)
I'm disappointed that I had those two seizures on Monday; am I ever going to be free? It's really not that big of a deal, the tumor is obviously the main issue, but man, wouldn't it be nice to not have to worry about having a seizure? I hate it when I can't control my body, or my mind. And it's more than hating the loss of control, it's literally terrifying. You don't know where the energy of your mind is escaping to, but you can't access it. And seizures aren't harmless. Not only can and do they damage your brain, I also know brain cancer fighters who have died from their seizures. Whatever the hell they are, they're nothing to mess with. Like the power of the ocean, it's important remain reverent.
I have a healthy respect for seizures, but I won't live in fear, so last night Dan and I went out with friends to the Women's Philanthropic Investment Group Art Auction. You may have heard me mention it before; I donate a piece of art every year. This year supported YouthCare, to help homeless teens. I wasn't that familiar with the organization before, but by the end of the night I was really impressed. The founding story, and what they do is absolutely amazing. It didn't hurt that it required me to get dressed up and out of the house to see bunches of our friends, but it was also exhausting, and I'm afraid I picked up a bug from the crowd. My throat hurts like nobody's business. Dang it.
In general, I feel like I'm getting better and better about bouncing back from seizures, and because of my trip with First Descents, I take calculated risks so that I am out living life. I may even say that I might be getting the hang of this tumor/seizure life. Knock on wood! I feel like I probably just jinxed myself. I hope not.
Seizures are down; I'm doing good. The other day, you might notice, I created a new box in the upper right hand corner of the blog. It tracks my progress avoiding attacks (seizure attacks, not maintenance man attacks - ha!). As Dan would say, I always have to have a competition. I love to see if I can break my own records. It's really just a mind game, a distraction. And, when you break your records, you have something to celebrate. :)
I'm disappointed that I had those two seizures on Monday; am I ever going to be free? It's really not that big of a deal, the tumor is obviously the main issue, but man, wouldn't it be nice to not have to worry about having a seizure? I hate it when I can't control my body, or my mind. And it's more than hating the loss of control, it's literally terrifying. You don't know where the energy of your mind is escaping to, but you can't access it. And seizures aren't harmless. Not only can and do they damage your brain, I also know brain cancer fighters who have died from their seizures. Whatever the hell they are, they're nothing to mess with. Like the power of the ocean, it's important remain reverent.
I have a healthy respect for seizures, but I won't live in fear, so last night Dan and I went out with friends to the Women's Philanthropic Investment Group Art Auction. You may have heard me mention it before; I donate a piece of art every year. This year supported YouthCare, to help homeless teens. I wasn't that familiar with the organization before, but by the end of the night I was really impressed. The founding story, and what they do is absolutely amazing. It didn't hurt that it required me to get dressed up and out of the house to see bunches of our friends, but it was also exhausting, and I'm afraid I picked up a bug from the crowd. My throat hurts like nobody's business. Dang it.
In general, I feel like I'm getting better and better about bouncing back from seizures, and because of my trip with First Descents, I take calculated risks so that I am out living life. I may even say that I might be getting the hang of this tumor/seizure life. Knock on wood! I feel like I probably just jinxed myself. I hope not.
I can't remember if I mentioned it or not, but the final MRI results, which is UCLA's review, will be available on this Friday. Fingers crossed they agree that the tumor is stable. Truthfully, I panicked when I read UW's radiology report where they measured my tumor area at 4.1 x 1.2 centemeters. I never want them to measure anything. It's just like how you never want a doctor to call you back quickly after going in for general testing.
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