Well, here we are. It's day 5. You've known me my whole life and I've known about you for 5 days. It is so surreal. That's what I keep telling people, it is just so surreal. This is something you'd expect to hear from your friends, who's friends uncle's mother's sister's best friend from high school's mom's mom has. But then you blink and It's me. ... Me. .. Jesus, it's me.
I have a tumor in my head... this is happening. This is actually happening.
Sometimes I take a step back and I just watch the people around me. The older women talking smack about a friend they all have, the older guys talking about the other women who are talking smack about a friend they all have. Kids wondering around with their parents yelling at them to get back. I have a thought that crosses my mind ".. I wonder if I'm going to be given the chance to do that. " Not talk about any of my friends behind their backs or chase after my kid, but to grow older. I have these moments in the day where I have a split second of fear of my own mortality. Of you, Larry, getting larger. Of not making it. And this:
I quickly shake it off and move on, because I'm not going to allow those thoughts keep me down. Not for another second. "I'm lucky" I tell myself. Because, honestly I am. Larry, you're roughly the size of an olive. I have a chance to beat you, I know this because I will go to the ends of the earth making sure you do not win. I refuse to let something so small beat me. But then... I have another thought as I look at the people around me,
"What if..?"
What if they have one of you, Larry? What if they have a Larry of their very own? The people I see in passing, the kids I see running around, the old hags talking about one other behind one another's backs, or the guys watching them do it.. What if they have one? I was born with you, what if they were too? I think that scares me more than anything. THAT is what keeps me up at night.
If I hadn't had issues with my eye, if I hadn't been seeing double, you would of just kept growing. ... There are people out there in the world with their Larry, and it's just growing inside of their head, and they have no fucking idea. That is what nightmares are made of. You are so rare, Larry. Literally 1 out of of a Million. 300 people out of MILLIONS a year.
299 people out there in 2015 may be going through what I am going through right now or may not even know it. It sends shivers down my spine just thinking about it.
That's why I've been leaning on my friends, family and coworkers heavily to spread the word about Chordoma. I can't sit still between doctor visits knowing other people out there are having headaches, or eye issues and doing NOTHING. Or not following up and being stubborn. Being stubborn has given me a chance to save my life, and to end yours, Larry.
People need to be more stubborn and serious about medical issues they are having. That's the bottom line. No one deserves to have a Larry, Larry. No one. Nothing is too small to get checked out.
It also makes it hard, as I've been looking around on the Internet and on Kindle for any books I can find regarding Chordoma, I've only stumbled on one book that isn't a jargon filled medical book for 200 dollars. One book about a man, Edward Lowe, who had a grapefruit sized Chordoma in his head. It has given me some comfort to know that this man went through this thing in the 1990's. He won, he beat his Larry. Granted it took 4 surgeries and 40+ treatments of Proton and Photon radiation, but by God, he beat the damn thing.
I wish I could hug him and tell him how much reading his book as helped. Granted, I am not 100 percent done with it, but I'm not sure I want to finish it! It's given me such hope against you, Larry. That a man in the 90's kicked his Chordoma in the ass, and his was triple the size of you.. Not just him, though. His cousin as well! TWO people in the same family..
He's a survivor. I'm going to be a survivor, and I'm going to help as many people as I can through awareness and writing that I can to be survivors... or at the very least educated everyone I can on the subject.
This is my purpose.
There isn't tons of information about Chordoma that isn't terrifying. There are websites that call Chordoma Cancer, others that call it a Disease and never mention Cancer. Is it the same thing?!
I don't know!
There are statements saying after people are diagnosed, they have 5 to 10 years, at most, of life left in them. That they are basically waiting for their slow growing Larry's to get bigger and take them down. But that isn't always the case. Because Ed survived ( I know because I skipped to the last few pages of the book while writing this, and don't you dare judge me) and I'm going to survive. And that is why I'm writing. That's the reason for this blog and for all the posts on Facebook. There isn't a lot of information, and I'm scared to look further into the information that is out in the universe. So, I'll write my experiences, my hopes, my troubles and triumphs.
I'm not kidding myself here, nor to you Larry, nor anyone reading this. This isn't fun. This is absolute hell. There is something in my body that I have no control over. Absolutely no control over. I know that I also have a very long road ahead of me. But it is a matter of accepting it, swallowing that extremely hard pill, looking at yourself in the mirror-- dead in the eye-- and say " Alright, here we go" and just doing it. I know as this blog goes on I'm going to have more to say about possible surgeries and radiation treatment, maybe even consoling and everything that goes with that. Changing my lifestyle and diet. The fear and moments of weakness that I am bound to have. But, I will also have more to say about the successes.
Every small Success.
Like just waking up, getting dresses, going to work, every moment that I don't allow those dark emotions to linger longer than just a fleeting moment. The laughs and smiles I have share with the people I love most and the people I don't even know. Those are small steps in the right direction. As time goes on, I look forward to the day where I can write a final blog. In that blog I will be able to end it saying two words:
I won.
Until then, I will keep ranting at you, Larry. I will keep spreading the word. I will keep nagging my friends and family and coworkers.. and most of all, I will keep living.
Sincerely,
Tara
P.S
You suck, Larry.
P.S.S
No one likes you, Larry.
Side Note:
I want to thank everyone from the bottom of my heart for reading, sharing and keeping up with this blog. Also, thank you for your love and support! Sorry if this post seemed to skip some. Just so much to say!
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