The Count Down.

Dear Larry,

Boy. It's been a bit, hasn't it? Can't say a whole lot happened between the last entry and now. Your day is coming up, you remember right? The day you'll be yanked from my nose and into a little tube and shipped off? Oh, did I not tell you about that last part? My bad. I just got off the phone with a LOVELY woman named Patty. Patty works at the Chordoma Foundation, you see. She works on getting samples from tumors to be cut open, poked and probed to find a cure. We're doing that... Well, more like I'm signing a paper saying they can take you to the lab and be experimented on.

Sorry not sorry.

Now that I'm over teasing you, here is the happenings:

The past week or so I've been avoiding blogging. It just seemed redundant to just tell you how my days was because life, simply put, just goes on. It doesn't stop because there is a tumor in my skull. I still have to work, I still have to be responsible and get things down. I can't allow myself to not work, or get things done, because I cannot dwell. I just have to keep.. well, moving.

The support at work and at home as been overwhelmingly amazing and I have to admit, I work and know some pretty awesome people. I'm never lonely and there is too much love in my life to be. I've been hugged, gifted things, and spoiled rotten. But, material things as neat as they are, don't mean as much to me as these people do. I love these people beyond words.

But the stuff is worth showing off. :D

AJ, a co-worker and a dear friend, stopped my the office and gave me the BIGGEST hug. I mean, he is like 6'7 or some noise like that, so it was a pretty big hug. But also threw hats at me and a Mudcrab plushie that will be going to the hospital with me. It was super sweet of him, and really, it was just nice seeing him. He is missed around here!

Then, a bunch of co-workers got together and also purchased this for me :

For those who don't know, I am a HUGE Alien(s) fan, and am pretty nerdy when it comes to stuff like this. This Xenomorph is one of my prized items and I will keep it for the rest of my life, and my child will keep it for the rest of hers, and so on and so forth.  I didn't know how to react when they gifted this to me. I sort of just sat there, stunned. Wanting to cry but not. I dunno, it just means so much to me. The Xeno, yes, but the fact that these lovely people would even think about doing that for me. I dunno. It just makes me feel.. beyond blessed.  So, thank you Andy, Tony, Frank, Mel, Elise, Ian, Steve, Jordan, Claire, Linette, Melody and Leah. And thank you to the Etsy Store Owner who crafted this work of art: https://www.etsy.com/shop/Metalmodelhouse

____________________________________________________________________________

Its taken me three days to write this blog, and for no reason. I'm stressed, scared but excited. The date keeps creeping closer and closer and a part of me wants to slow down the time and a part of me wants to speed it up. 

We will see. 

Until next time. 

-Tara

The Eviction Notice

Dear Larry,

On Monday, Larry, your eviction notice was signed and delivered. On march 10th, 2015 -- In less than a month -- you'll be removed from my head, and hopefully my life. Though I am scared beyond measure I am also excited that this will be over. Here's how it is going to work: 

They'll be going through my nose, using tiny scopes and instruments they shove up there. Also there will be electrodes on my skull to help guide them through. Once they're through my sinuses they will drill through the clivus and then you'll be there. The doctor will take a snip of you, and hand that snip to another doctor on stand by, who will look under the microscope to make sure you are a Chordoma. Once that is done and they find out you are a Chordoma, they will move on. Hopefully you're fat and squishy. Because if you are fat and squishy they'll slurp you up using a little suction hose. If not? Things will get a bit more difficult and they'll have to remove you piece by piece. 

Of course there are risks. Risks to the nerve your little fat body is pressed up against. Risks to a major blood vessel behind your little gross self, and if they cut or damage it, I could have a stroke. Another thing is that there is fluid stuck behind you, and that fluid needs to come out, which has pros and cons. The pro is if the fluid comes out, that means they got some, if not all of you. However, I'll be at a higher risk of infection. 

Here is the fun part, because they can't have me leaking out of the nose, they will put a drain in. The drain will run from my head and down my back. I'll be in the hospital for 5 days and out of work for 6 weeks. Which is a suuuuper long time. But, we will see how it goes. 

So, Larry! Here we do. The beginning of the end.. hopefully.

Everyone at work as been super supportive and super nice. They've even gone so far as gifts, which is appreciated but not necessary. Their love and support is all I need. The other day I walked in and there was a large box of Magic Cards on my desk-- which if no one knows, I'm a huge fan of the game-- I nearly cried. Andrew left it on my desk and I tracked him down and gave him a awkward hug. I'm so appreciative of it, and every other gift I've been given. But, honestly, it is not needed. As cheesy as it sounds, I feel blessed to know so many fantastic people and that is gift enough.

The pack of many, many good cards.

Buuuut, as a side note, I love the magic cards, lol.

Anyway. I also have my pre-opt surgery appointment scheduled. February 20th at 8 in the morning. That's when they'll check me out. Hopefully a week after that I'll be able to work from home, to ensure I don't get sick from all the gross Call Center germs floating around. We'll see, though. I just cannot wait to get this over with. I've come to terms with everything, I know this has to get done. I know it is so scary right now, but at the same time, I'm excited to get this over with. I feel like this has been looming over my head forever know, which I know it hasn't. But when you know there is something living in your head, you're just ready to get something done. That something done is within my grasp. It is just a matter of keeping my cool and getting there.

At least it isn't brain surgery.. Or rather:

Right now I'm just trying to drink more water, stay active and eat a bit better than I have been. So far so good, I've been getting my daily required amount of water, which is good. Again, the support from my coworkers has been amazing, and my mom and girlfriend has been fantastic.

I am such a lucky person. I truly am.

Love you guys.

Hate you, Larry.

Sincerly,

-Tara

P.S
No one likes you, Larry

P.S.S
You stink Larry. 

Damnit, Larry

Dear Larry,

GAWD DURN IT, LARRY. I HATE YOU SO MUCH. HATE. HATE IS A VERY STRONG WORD SO I AM WRITING IT IN ALL CAPS, BECAUSE THAT IS HOW MUCH HATE I HAVE FOR YOU.

And I'm done. Sorry, there. Had to just get it out. Okay, now. *Ahem*

Dear, Larry

Tomorrow is the day. Tomorrow is when we talk to the neurosurgeon again. This time it is to get the 'plan of action'. Tomorrow is the day we figure out how to get you out of my head. To be totally honest, I am absolutely petrified. Of course I did what I wasn't supposed to do and that is to look online. I just wanted to know where the clivus was! You know, the one that you're leaching off of, you giant turd.

Yes, I called you a giant turd.

I don't want to assume how he is going to get to you, Larry. I don't know if it will be something 'simple' as going through my nose, or if it'll be more difficult like breaking my freakin' jaw. I dunno. I don't want to assume, like I said. But the idea of everything really freaks me out. But, I guess the idea of any super evasive surgery would be pretty freaky to anyone.

Ugh. Just... Ugh. I hate this. I'm trying to be strong and I'm trying to stay positive, and for the most part I am. But I am scared to death..

And it is totally okay for me to feel like this. I've come to terms with this. I am going to be scared, ya know? I'm going to get my head cut open, how I don't know, but at the end of the day, my head is going to be poked at. And I hear it is a long surgery.. and not an easy one, at that.

But I can do this.

I'll keep telling myself this. I know I'm over thinking, and I know I'm stressing before I need to. But I can't help it. I know it is going to happen, I can't control it, and I have to go with the flow. That's just the bottom line. I have to go with the flow.

So I will.

And that's it. That's tonight letter to you, Larry. I am going to ask all my questions to the surgeon, I'm going to get as much information as I can, and then I will just go with the flow.

Sincerely,
Tara

P.S
No one likes you, Larry.

P.S.S
You stink, Larry.

Checked out.

Dear Larry,

I had checked out the past couple of days. I was feeling pretty shitty and totally stressed about the idea of surgery. I had spoken with the Neurosurgeon's office again, and made an appoint for Monday at 1:00 to have a consultation about the surgery, and for some reason that was just too real for me.

Everyone keeps saying "Oh, you're so strong" and " You're taking this so well",  but these past few days I've felt weak and helpless. For a moment there, I thought I was letting everyone down, being weak. I was also feeling really super sorry for myself but at the same time, hating myself for feeling sorry for myself because there were people out there with tumors much larger than mine. Also, there were people out there with cancer that takes lives quickly. .. I was just having all the feels. Or, it can be summed up by this picture:

My mom talked to me, hugged me, told me it would be okay, but told me it was okay to feel what I felt..to be depressed and go upstairs to my room and feel those feels, and that was comforting. Jo held me for a while and just let me cry, talked to me, told me it would be okay, kissed me and loved me. The feeling of her arms around me was enough to comfort me.  I appreciated them both so much. But, I just felt so bad. Felt bad about the surgery, felt bad I wasn't being strong, felt bad I wasn't handling this better, felt bad about you, Larry. About you just being there. I just felt so freaking bad! UGH!

I allowed myself to have those couple days of just.. being. I didn't blog because I didn't have the energy and I didn't want to cry again. So, I just was. Just going about my day. And today, I feel much better. Jo and my mom have been nothing but supportive, and all my friends and coworkers have been amazing. Dina, a good friend and coworker, even took me out all day today and it was so nice to just not have to worry about a thing.

I'm not sure who said this to me, and I wish it did, because it made me feel a tons better too ( I think it was Erica) : bravery isn't having any fear, it's being scared and doing it anyway.

And I am going to do it. I'm going to work through this. I will have the surgery and I will get past this.

This whole thing is an emotional roller coaster. And I'm learning that it is okay for me to feel like absolute crap, its okay to be really depressed, and it is okay to feel like nothing is wrong and ignore it for a while. As long as it don't stay that way, it is okay.

However, I've never been one to stay down for long. I'm trying to turn around this whole ordeal. I've started a gofundme.com page (http://www.gofundme.com/chordomawarrior )  to raise money to buy bracelets so I can sell those to raise money for the Chordoma Foundation. I know they already have bracelets, but  I wanted to make these more personal. All the money will go to the foundation and some people get some really kick ass bracelets!

I've been working on eating better, Kate has been super supportive along with Jo and Mom. Been drinking so much more water, and some girls at work ( Elise, Mel, Lisa and Myself) are having a competition to see who can drink the most water per day. That has actually helped a lot in the water intake.

Honestly, without these people in my life, I don't know how I'd be handling this. I cannot stress this enough to anyone going through this or something similar to get your friends and family involved. Don't keep things like this secret. They will help so, so, so much. Believe me.

Having people there is amazing. And I thank all those in my life again, from the bottom of my heart, for everything that everyone does for me and my family.

So, I will get through this and I have an army of people to help me. But, it is also okay for me to feel super sad and helpless. But, I will not let those moments stick around for long.

This too shall pass.

That's it.

Sincerely,
Tara

P.S
No one likes you, Larry

P.S.S
You stink, Larry

The Call and the Road Ahead

Dear Larry,

Not sure if you know this, but we were waiting for a call from the Radiology Oncology office today. When we went, they had told us that we were going to be put on a list and discussed about at this big Wednesday Doctor meeting. Its where all these big-wig Doctors get together and talk about special and difficult cases. Basically, they talked about us behind out backs.

Anyway, they called. We're going to be going through surgery. The Neurosurgeons office will be calling us sometime this week, before or on Friday. Until then, it is sort of a waiting and preparing game. Which is slowly driving me insane, but I get why this type of thing can't be rushed. After all, I kinda need my brain and spine and all the things up there, 'cept you of course.

So, what am I going to do in the meantime? Try and get healthy.

Because I'm sort of like this:

... Buuuut, I'm also kinda like this:

Regardless, it needs to be done. One of the Doctors Monday had stated that if I just walked 30 mins a day, to get my heart and lungs ready for surgery, that would be enough. But, honestly, this whole thing has scared me pretty bad. I was thinking about what if I wasn't young and someone in good health? What if I was bigger, or so unhealthy to the point of surgery not being an option? That scares the crap out of me. I gotta be around for a while, damnit!

So, an amazing bunch of people at work and my girlfriend and mom are all on board with helping me get ready and get healthier.  We do water races at work to see who drinks more water. Some coworkers are willing to go walking around the building. Kate and her Boyfriend, Matt,  is willing to join a gym with Jo and I.  I'm trying to stay away from the junk food and soda. Which, is kinda hard to do.  But, I want to get healthy.

Skinny doesn't necessarily mean healthy.

I'm trying to be healthy and happy. I'm not looking to go skin and bone.  I want to be comfortable with my body and I want to make it easier for the Doctors. I know I'm not going to be able to lose a ton of weight before the surgery, but I do want to be healthier.

Larry, that's all I got tonight. I'm still kind of feeling off. I guess its half because the stress is gone, but a new set of stress is setting in. Preparing for surgery, knowing it is coming down the line... Ugh.  And sometimes I feel super guilty being so nervous and sad. There are people out there that have it worse than I do, and I worry about those people. But, I guess you can't help worrying a little about yourself, ya know? ...

Well, you wouldn't know, Larry. You're just a dumb tumor.

Bed time!

Sincerly,
Tara

P.S
You stink, Lary.

P.S.S
No one likes you, Larry.

Chordorma- Cancer, Disease or something in-between?

Dear Larry,

Let me first start off  by saying, I don't know 100% that you're a chordorma. I wont know until I've had surgery for a biopsy. Until then, you're a tumor in my head that appears to be, and most likely is a chordorma. Now, with that out of the way, lets talk about what you are... if you are in fact a chordorma.

First thing that came into my head when Dr. Kelmer called me and said those famous words " There's a tumor", my mind jumped on the 'Oh my god, I have cancer' train fairly quickly. Of course it did. When someone says tumor, that's anyone's first assumption. But you, Larry, as a chordorma... are a little.. well, let's say special. Dr. Metha and Dr. Jason probably explained it the best to me.

Chordoma isn't really cancer, in the typical sense of the word. It doesn't typically metastasize and spread to different parts of the body like, lets say, breast cancer. It doesn't typically attack the lymphatic system, doesn't go into your bones, it doesn't do any of that. Typically. I do say typically because there is always that 1% to 5% chance that it does, in fact, turn into something more. But, typically, it doesn't.

But what it does do, like cancer, is grow. It grows slowly, or at times, can grow at a quicker rate than normal. It fills the spaces from where it is growing and then starts pushing on things that it shouldn't be pushing on, and causing a whole whirl of damage if not treated not to mention could also be fatal.

Being a tumor that grows, but doesn't spread and also super resistant to radiation treatment, I think the medical world has a hard time truly classifying this type of tumor with any one name. I feel like this is why when you research chordorma you'll see websites classify it as cancer while others call it a disease. Which, I think, can be super scary and off-putting. .. Not saying this isn't scary and off-putting already, but.. there ya go.

I wanted to explain this, as this is what the Doctors told me, Larry. Because when people are researching on chordorma, there is a LOT of scary information out there. Tons. Big scary words like cancer, disease, life expectancy, surgery, reoccurring, so on. I think it is nice when you can just sit and be able to at least rationalize what is going on by telling yourself what you have.

It is also good to note that it only grows in three areas:
1.) The Clivus, which is a bone in your head near the brainstem.
2.) The tail bone ( a literal pain in the ass)
3.) The spine

Chordorma, as far as I've read and have been told, is cells left over from when the spine forms in a mothers womb. So, I've literally have had you, Larry, my entire life.

It is also good to note that this isn't something that has been passed down from family member to family member, skipping generations, or runs in the gene pool. This is just something that happens. It sucks, but.. there it is. At least now we have the medical professionals, some that only specialize in chordormas to lead those suffering with Larry's in the right direction.

But, there is another thing that I really don't like about you, Larry. You can grow back. I think that is the possibly the scariest thing. If you are, indeed, a chordorma, which I feel in my heart of hearts are, then you can grow back. I might have to deal with you for the rest of my life. Though I know it could be worse, I could have an aggressive type of cancer and be dead in two weeks, it is just a hard pill to swallow that this will be my struggle for the rest of my life.

But, that's only if I look at it that way. Honestly, I look at it this way:

To those who read my blog,
Thank you for reading it. Thank you for educating yourself through my babbles and rambles, and jokes.  Remember that no ache and pain is small enough to ignore. If it keeps happening, if the pain gets worse, or you don't feel right, please get checked out.

To those who read my blog and have a Chordorma, or know someone who does:
Please be positive. You have an entire group of people in this world who are going through the same thing you are, some may have it worse some may have it better, but the fear is still there. Please make sure you are educating yourself with the right information, and don't look at things that will dampen your spirits. You are strong, it is your body, and you have a say in the treatment you receive. NEVER be scared to ask for a second opinion. This is your body, damnit.

To everyone,
Please take care of yourself. "Skinny" doesn't mean "Healthy", that is not what I'm talking about. I mean take care of yourself. Go to the doctor, get yourself checked, check yourself, and if something doesn't feel right, get it checked.

Side note, I am not a medical professional. All this is what I have come across and the research I've done, so I may not be 100% correct. Always consult your doctor about everything. :)

And that's it!

Sincerely,
-Tara

P.S
You stink, Larry

P.S.S
No one likes you, Larry

Radiologist Oncology Consultation Day

Dear Larry,

It is Day 7, and we had a big day today. Today was meet with the Radiologist Oncologist day! I was scared for most of the day. Fretting over nothing and over-preparing, which I knew I was doing but I couldn't stop myself. A had a few moments of laughter and smiles before I got to work, as when I walked into work there was a vase full of beautiful flowers and a bag from a comic book store sitting on my desk. One of my Co-Workers, Eugene, bought me flowers and Andy bought me a new mug (lemon grenade from Portal!) and an Alien figure ( Xenomorph kind, not the little green men). Eugune caught me before I went looking for him, by sneaking up behing me and scaring the crap outta me. But it was followed by the biggest hug. Couldn't even be mad at him. I went looking for Andy after, to thank him and  give him a hug, which I did. I chatted with him a bit, his and his wife just had the prettist baby girl. I was chomping at the bits to see more baby pictures, which he was more than willing to share. I have to say, he and his wife made a pretty little girl.


When I got back to my desk, I printed out a bunch of questions from the support group I'm involved with, filled out all the paperwork that was e-mailed to me... twice. I got a folder and put all the paperwork in the folder. Made sure I had a good pen to write with, and I even downloaded a voice recorder to tape everything the doctor was going to say. Then I just sat and stressed, trying to work.

My appointment was at 1:30. and around 11:45 I was really starting to freak out on the inside.Just on the inside, however! My mom called me around this time and informed me my kid was sick, so she wouldn't be able to go to with me, because she had to tend to the baby. This caused me to freak out a little bit more. I didn't blame my mom or anything, it was just the fact that she wasn't going to be there. I'm a mama's girl, always have been always will be. But, this was something that couldn't be avoided. I mean, you really can't tell a 5 year old to get over it and get better! That's not how it works.

I put on my big girl pants on, told my mom it was alright and that I love her, and moved on. At the very least I knew Jo-- my girlfriend-- was going to be there. Jo has been there throughout all of this, always holding my hand and keeping me level headed. So I was thankful that this appointment landed after the time she got off school. I don't know what I would of done if I have to do this by myself. Before I left work I stopped by the desk of one of my BFF's, Kate. We talked a moment, well.. most I said I was scared and freaked out a little bit. She gave me a hug and told me I'd be alright. She also crocheted me the coolest little multi-colored pumpkin hat and purple arm tubes. I promptly put the hat on my head and forced myself to get going. It was already 12:00, and if i didn't leave now, I'd be late.

Rocking the pumpkin hat and what I call my 'hug shirt' from Jim. :) 

I turned on some music, well, I had one song on repeat on the way to go get Jo. Cher, you haven't seen the last of me. It has sort of become a theme song. I sang at the top of my lungs driving down the highway. Once I picked up Jo, it was time to get serious again. We held hands the whole way to the Hospital, which was about a 15 to 20 min drive from her college. We talked about everything from food, to her school, to the appointment we were going to.

Before I knew it, we were there. We valeted the car and rushed inside, it was 1:20 and I didn't want to be late. I got my arm band, then started the trek down to the other end of the Hospital as Jo went and got us a subway sandwich to split.. our first real meal of the day. The walk to the back of the hospital seemed to never end. I could hear my heart pounding in my chest from nerves alone. I don't know what I was expecting, letting my nerves get like that. 

Down to the lower level and there I was. Standing in front of this large desk in the back center of the room. Two men sitting behind the desk, talking to a woman. I interrupted, politely of course, and the other gentleman pointed me to the other. I signed in, got more papers to fill out and a picture taken. The guy asked how I was, I said " scared". He smiled and said " You'll be fine, there are some fantastic doctors back there" nodding to the door. I smiled and went and sat down, and around this time Jo caught up with me with the food. 

We sat at a table and inhaled our halves of the sandwich, as we weren't sure how much time we would have before we were called back, Once we ate, we seats to something more comfortable than the hard seats we had been sitting on while we ate. I leaned against her, and she held me a moment, and kissed my forehead. 

The Nurse finally came and got us. 

Nurse Nicole sat us in a consultation room and asked a few questions about my symptoms. She took some vitals, laughed and joked with us as we nervously joked around. Finally, she left to go get one of the medical residents, who's full name slips my mind. I know it was Dr. Jason something. So, I'll just keep calling him Dr. Jason. 

Dr Jason looked like Chris Pratt almost, was super friendly and willing to listen to my terrible jokes and answer all my nervous questions. He asked me about what lead to this point, and what I thought was going on. I told him that we weren't 100 percent sure what the tumor was, but we were pretty sure it was a Chordoma. I told him everything I knew about Chordomas, ever little detail i could remember. Good and Bad. I think he was almost surprised I knew so much, as he just sat in his seat a moment, nodding. He then sighed and told me that, for the most part, I was correct. 

  I told him I had a whole checklist of questions I wanted to ask. He was very pleasant and told me to 'go for it'. I asked a couple, but soon realized that most of the questions I had were for the nuneurosurgeon. But, I got a couple of good questions in, like "what happens if we tried different treatment methods, or just didn't do anything". He looked at me, shook his head and said " that isn't an option". After all my questions, he made me due some basic movement tests. 

After those were done, he said he was going to go get Dr. Mehta. 

Dr. Mehta walked in, and I was surprised I wasn't looking at a 60 year old man. He was middle aged ( if that) and had a kind face. He shook both our hands and then sat down in front of me. He introduced himself and asked what I thought I had. I told him and he nodded. He tested my eyes again, and I think was a little surprised how doubled my vision was. 

He then said that he though surgery was going to be the best thing first. That he would like to being my case to the big meeting Radiologist and Surgeons have every Wednesday. He said the if it is a Chordoma, which he felt like it was, it was very resistant to radiation treatment. That he would be more comfortable with a biopsy and removal of the tumor and then to use radiation to treat the site where the tumor was. 

Jo asked him " What if the neurosurgeon decides it is too risky to try and remove the tumor, what happens? " he then looked us dead in the eye and said " Then we find someone who will do it. There are people that treating and operating on this type of tumor. This is all they do. " This put my mind to ease. I told him I was scared, and he told me that it was a natural feeling. But this tumor took a life time to grow and nothing was going to happen overnight.

I told him I was worried about the surgery.  He then took up all of the sudden and said  " i want to show you something. I'll be right back. " He came back in with a laptop and pulled up a picture of a Chordoma Tumor 6 times bigger than mine. He said this was a Chordorma that he just finished treating. He then pointed out a small corner and said " This is about the size of your tumor". He smiled and went on " This is the 1st surgery" moving to the second picture  "This is after the second," he then pointed to the last 2 " This is after the 3rd and 4th surgery. It's nearly gone." This just comforted me beyond words. He said " This tumor does have a chance of coming back, but the smaller they are.. the better." 

 He said that he would be putting my name on the list to be discussed on Wednesday, and that he felt surgery was going to be the best bet to start. He shook out hands again and excused himself. Dr. Jason saw us out, but not before showing me my scan and my tumor to compare the size of the one they had just showed me. Jo and I then left. 

So, here I am again. Just waiting. I don't know why I thought radiation might of been an option to kill this thing. But, i feel comfortable in knowing that I have the best Radiologit oncologist for the job. 

Oh well, Larry. Everything happens for a reason. And right now, I'm ready to fall asleep, as it is so late. So, i will talk to you tomorrow more. 

Sincerly, 

Tara

P.S.

You stink

P.S.S

No one likes you

Babbling.

Dear Larry,

Boy, lemme tell you, I'm running late with writing to you tonight. Its only because I was having such a fantastic day today. You only crossed my mind a couple times! Well.. and every time I looked to the left.. Stupid Larry, pushing on the 6th nerve of my eye.. making everything doubled and weird. Ah well. Today was still a good day.

I woke up today in better spirits. You see, Larry, last night I found a Facebook group dedicated to survivors and fighters of Chordoma. It is a private group, so only members are allowed to post and see posts. I thought to myself " What the hell, I'm going to see if I can join". I read in that Ed Lowe book that having a support group was super important.

He was so right.

Both of the admins messaged me and asked why I wanted to  get into the group. I told them about you, Larry. They let me right in. I made a post and introduced us, I told them all about you and I. What happened next I can only explain as amazing. People I've never met before, or even heard of, started to comment back and give me such a wealth of information it was almost overwhelming. Also with that information came this different type of support; Not one of them felt sorry for me or this situation you've put me in, Larry. They gave me hope by offering me information and the comfort of 'been there done that', because most of them have already overcome this.

Ed Lowe also said in his book that you come across people, who to everyone else, are just normal people.. But to you, become a source of inspiration. They become your heros. Right now, every single person in that group who has, is or knows someone fighting Chordoma is my hero. They have given me so much information and pointed me into so many good directions, its the only way I can describe them right now.

So, if anyone from the group is reading this, thank you so much for all the information and for giving everyone with Chordoma ( or who knows someone with it) a safe place to connect with others.

But, Larry, that's not the only reason today was amazing.

Today my girlfriend Jo and I ran off together on a thrift store day. We scored some TV trays, a computer chair and two new arm chairs for less than 30 bucks, I'm writing this blog in my new arm chair recliner! It is so stupid comfortable.

Man, I love  Jo's and my little adventures together, as we have loads of fun just by being ourselves. She can always make me laugh and makes me feel so loved. Today was no different. She had the idea of going off the beaten path and cutting through Loche Raven Reservoir. It is such a pretty drive up through there, though most of the main road was closed. Maybe due to the ice.. or a weekend thing. Not sure.

Anyway. we ended up parking the car and walking a little ways down to the water. She had to help me down a small incline because my left eye was making me feel uneasy. But, we made it down the water and took tons of pictures. Mostly being silly.Which is the way we like it. I know that this time is super difficult for her, but she never shows it. She's one of the strongest people I've ever met in my entire life. I'm so lucky to have her in my life, and even luckier to call her mine. She is just a constant source of inspiration and love. Another one of those heros, but this one I get to kiss and spend the rest of my life with. :D

When we got home, we cleaned house and got ready for our neighbors kids to come over for a while. My mom was up and about, tinkering with random things. She's been so super strong through this whole thing as well. Today she was having a bit of a downer day, which we are all allowed to have. She's my mom, ya know? She wishes she could do something about you, Larry. I know it breaks her heart that there is nothing she can do. I try to tell her that her love and support is enough.. But, again, everyone can have a downer day. I'm thankful she's just here to be with me. I love her so much and am just so thankful for her. I just wish she wouldn't kick herself in the ass for things she has no control over.

Oh well..

Anyway, the kids came over and all played with our little girl. They seemed to have tons of fun, which is what we aim for. But it was late-ish by the time they went home. Not that we minded, they are pretty good kids and they all have fun together.

 Anyway, I've just blabbered on tonight. I did have such a fantastic day. Tomorrow is Radiologist Oncologist appointment. I can honestly say that I'm only a little scared. I've done my research ( without getting too far into it) and I have a pretty good idea of what to expect. Plus I have my Girlfriend and Mom going with me. Plenty of people to hold my hand! I have to just keep reminding myself that tomorrow I'm just chatting with the doctor.

Which reminds me.. I have to print out the checklist the support group told me about. ... Hm.

Well, I do think it is time for bed. I promise I'll write something a little more.. well, more tomorrow, Larry. I also have to research more doctors and a new diet plan for myself. I'm going to be getting into health to more easily treat and get rid of you.

But! Tomorrow is a new day.

Sincerely,
Tara

P.S
You stink, Larry

P.S.S
No one likes you, Larry.

P.S.S.S
Jo redid the drawing of you that I did, that shows your demise via arrow in the head and lightening that represents proton radiation treatment.

Booyah.