The Wheels Keep Turning

Dear Larry,

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!

Coming to Terms

Dear Larry,

It has been a difficult couple days for me, finding out you're in my head... well, it's been a hard pill to swallow. It's only been four days, but it seems like a life time since the doctor called me and told me. Those words will live with me forever.

"Tara, there is no good way to say this, I have some bad news for you, you have a Tumor"

He said it on one breath. That's all it took, was one good lung full of air.. It took mine away. It was like he used my own breath to tell me.  It was like being punched in the gut, and for a moment I thought I'd black out. I could hear myself sob out " What!?" before he continued to tell me that he wanted me to come see him ASAP and to bring the disks from the MRI. That was Tuesday, the 27th. I called my girlfriend and told her, and we spent a few moments crying on the phone, she was just in as much shock as I was, and I hated that I was so far from her when I told her. I left work, after three beautiful coworkers of mine spent a couple of minutes calming me down, telling me its going to be okay. Thank you Philly, Lisa and Mel. From the bottom of my heart.

I saw my boss on the way out to the parking lot, and told him. He hugged me, told me a story about his wife going through something similar and told me to take as much time as I needed. After I got in my car, I sat there a moment. Stunned. I called my girlfriend again and we chatted for a moment. I can't tell you guys how much I love this woman. She's my rock and the one I lean on when I just can't stand upright, figuratively and literally (sorry about those sloppy drunk nights in the past, babe!).

I then called my mom, heart in my freaking throat, scared she was going to react in the worst way possible -- like the way I reacted. She picked up, I told her.. and to my surprise, she took it so well that I thought she didn't hear me. " Location, depth and size", she said "Get those for me". She told me she loved me, to stay strong, and that was it. And that's all that I needed. I can't thank her enough for being so strong. My mom is seriously my hero.

After that, the doctor. He pulled me into the office as soon as I walked into the lobby and once we were back there, he gave me the biggest hug and I cried on his shoulder for a moment. He told me it was okay to be scared, and that he would show me where it was and everything he could about it. Which he did. He told me that the person looking over the film from the MRI was his friend, and when he found the tumor, he called the Doctor at home. That's why I was there so quickly. He loaded the film and we looked through hundreds of pictures of my brain, skull, and everything else hanging out between my ears. Finally, he found it. In one of the pictures out of the hundreds we looked through. It was almost anticlimactic. It was just like an olive in front of my brainstem, and you couldn't really make it out without him pointing it out. But, there it was.

 I am grateful to have this wonderful doctor that cared. He told me I was going to get depressed, and that was okay. That it was to be expected. He told me don't be ashamed to see someone, so you can talk to them, or be scared to get on antidepressants. I asked him " Doc.. how scared should I be?" .. He paused a moment. Smiled and said " Moderately." He told me that there was a lot that was going to be happening, but I was in the best care in the world, that where he was sending me had one of the best teams in the US and I'd be in good hands, and he would be following me every step of the way.

The doctor's words rang in my head, and the rest of the day was sort of a blur. I remember sitting on the couch and just.. existing. With all this news and information in my head. I'd have moments of crying and self loathing. My girlfriend went to the store and surprised me with these beautiful flowers with my favorite color and she cooked me my favorite dinner ( Chicken Katsu, Mac Salad and Rice). We made the best of that day, and held one another in silence at times. We also made fun of you, Larry. But, you probably heard. Loser.

I made the announcement about you, Larry, on my Facebook. And the out-pour of support and love was overwhelming. I cannot tell you guys how amazing you all are, and how much you've all helped me come to terms with this.

On the 28th, I saw the Neurosurgeon, and older gentleman who saw me between two brain aneurysm surgeries, which made me feel lucky that he made time for me. What he said to me was scary, because he didn't say much. The jist of it was he needed more information. He needed to know what the bone the tumor was growing on was doing. If it was there, thicker, thin or what. He said that the tumor was in a really hard place to get to, so he needed all the information he could. What I hear? The tumor was tough, and it may be impossible to get to. Was that what he really said? No. But, that's what I heard. I cried more. And spent the rest of the day feeling pretty shitty.

The Neurosurgeon referred me to the Radiologist Oncologist for a very scifi type of treatment option, called Proton Radiation Therapy. It sounds like this:

But really, it is something like this: 

I have an appointment Monday, February 2nd at 1:30  for a consultation, at the University of Maryland. So, we will see what happens. 

Yesterday I received a package from an old coworker of mine who now works in NYC. He got me my current job, which I love. I have nothing but respect for him and look up to him professionally, and also consider him a very good friend. He sent me a package with hats, a shirt and a beautiful letter that made my day. It was just unbelievably sweet, and brought me to tears. Myself and two other of my coworkers wore the hats around all day, giggling at one another. It turned a very shitty day into a very good day at the end ( plus a couple drinks at lunch sort of helped out, as well). 

So, here we are Larry. It is now the 30th, and everything has sort of slowed down. Everything moved so quickly at first, doctor, doctor, cat scan, new doctor appointment, and now we wait. Where we go from here, I don't know. But, on the bright side, I drew a picture of you: 

See how dumb you look? ... Because you are. Super dumb. 

Just saying. 

Anyway, thank you all for being there for me. For checking on me, and for reading through this blog of mine. I'm going to try and write in it nearly every day of my thoughts and feelings, and just generally hating on Larry. A special thank you to my Mom, My Girlfriend Jolynn, my daughter for being such a good girl, Kate, Jonathan and all my friends, my family, and all my coworkers. I cannot express how each and every one of  you have helped me come to terms with this. 

So thank you, thank you, thank you. 

Larry. Screw you.  Or as Christie ( my sloth buddy and coworker) put it #fucklarry.

Sincerely, 

Tara

P.S. 

You suck, Larry

P.S.S

No on likes you, Larry. 

Meet Larry.

Dear Larry, 

You are a tumor in my head. You're small and you're scary. And I hate you.

They call you a Chordoma, but right now, they're not 100% sure that is what you are. But, that's what they call you. They say you effect 1 in a Million people, mostly men. So, why you have it out for me, I don't know. You're sitting on a small bone in my head between my pituitary gland and my brainstem. You're about an inch long and a half of inch thick. But, you are fat enough to be pushing on a nerve that runs to my eye causing me Six Nerve Palsy. ... Fat-ass. Now I can't look to the left without seeing double of everything! And it is a constant reminder that you're there! Thanks, jerk.

I mean, just look at you:

We've already been to a few doctors, and you've been stubborn this whole time. Hopefully this new CAT Scan will shed some light on your position to see if we can remove your ass from my skull. We will be seeing the radiologist Monday to see if we can start Proton Radiation Treatment to see if that will stop you from getting too comfortable in my head. Because, honestly, no one should get comfortable up there. It can be a weird place. .. And let's face it, you don't really deserve to be there.

God, Larry. You're such a dick.

I've cried a lot and I'm scared. But, you will not bring me down. I have more support and more love in my life than the amount of cells making up your tiny little fat, gross body. My girlfriend and my mom are my rock and give me so much love, and the rest of my friends and family give me so much support. There is no way you can bring down this entire herd of people.

Larry, look. I've called you so nasty names, and to be honestly, I don't feel guilty. I think you're a monster and I hate you so much. But, a word of advice before I get too nasty -- Get out why you can, because shits about to get real, and you don't have a chance in hell.


Sincerely,

Tara
You know, the lady's head you're in.

P.S.

You're a jerk.

P.S.S

No one likes you.