Alive!

Dear Larry the -- Wait a second.

Whoa.

.. I mean.. Whoa.

You're not there, are you? .. I mean. A hear a faint little groan from deep inside my head, but for the most part, you're not there. Holy shit, guys. Larry is nearly gone. Its been a while, and lemme tell you, a LOT has happened. I know I've been super bad about keeping up with my blog, but still. No excuses. .. I just got super lazy. So, here's what you've missed:

On March 24th, I went in for my surgery. I was fashionably late by a half hour, because.. .. ya know. Surgery looming over your head tends to make you wanna move a touch slower than you normally would... and lets just be honest here, it was 4 in the morning and I was flipping tired. Anyway. I got there.. and everything seemed to just happen in a flash. One second I'm in the waiting room, just paid an ENORMOUS co-pay, and the next I'm in a hospital gown with a swarm of people around me. I was being poked for blood, asked questions by three different people, getting my blood pressure done, and trying to say good-bye to my mom and girlfriend. The ENT ( ears, nose and throat) Doctor came in and shook my hand. He was a tall chap, and funny. He was asking me if I was ready, which I just sort of stared at him blankly.. sorta like this:

He smiled and went on to inform me that he hadn't had his morning coffee and that he was up all night drinking, so he wasn't ready either. .. He was joking. I hope. I mean.. .. He was. Right. Yeah, we're all good here. Anyway. I was wheeled back, my girlfriend and mom tagging a long behind me. Talking somewhat until we came to a fork in the road, so to speak. We went one way, my mom and girlfriend went another. When we rolled through the doors of the operating room, I remember it was so white. There were a lot more people in there than I was anticipating, and they were all busy doing something. One nurse was checking fluids, another guy was looking at a 3d map of my head ( which was UBER weird to see), another two were helping me get moved to the table. The main nurse said " I'm about to be your favorite forever" then placed a warm blanket over my body, which felt so amazing. The anesthesiologist was hover around me and said " we will start when my partner comes in." Two seconds later, he was there. She said " we're going to let you go under now" and I nodded and said okay. She said " You're going to feel warm and then that will be it." I nodded again. There was a warmth, and my eyes felt so heavy. The warmth spread to my limbs and that was it. The last thing I saw was the lights above my head.

I woke up to another swarm of people, a couple saying my name and something about moving to another table. I was in a different room and they were pulling me to lay on a catscan table. I helped as much as I could, but mostly was dead weight making things harder. I remember a guy from the CAT Scan saying good luck to me. Then I remember being in recovery in ICU. There was this amazing nurse there that stayed real close. She informed me that they stopped the surgery after getting through the bone they drilled through. Dr. Aldrich wanted to make sure his measurements were 100%.  That I'd have to do this again. I was sad, but I was also really thirsty and she was holding ice chips. I ate a couple and drifted in and out of awake and sleepy-sleepy time. Jo and my Mom finally came back and they both held my hand. They asked if I knew and I nodded. They said that Dr. Aldrich came out and said that he stopped because he wanted to be sure. A resident came and talked to us and said that in the OR Dr. Aldrich stopped and said " If this was my daughter, I would want me to stop now."  and that's that they did. I thank him, from the bottom of my heart, for that.

Next was ICU room, where I slept off the groggy-ness for the next couple of days. I sorta looked like this:

But, honestly. This is what I looked like:  

The circles on my head are from these little stickies they put on my head to help map out where their 'gps' was. .. And let me tell you, that was hard to get off! I wasn't in a whole lot of pain, but my shoulder really, really hurt from the position they had me in. I couldn't breathe because I was all stuffy, and it hurt to talk. But, the pain itself wasn't that bad. They brought me food once I was set up in my room, which I tried to eat. But, promptly threw up all over my self. Thank god my mom and girlfriend was there and cleaned my up rather quickly. I chewed on a little bread and chewed on some ice, but eventually, just went back to sleep. 

I was bouncing back within 24 hours. My best friend came and saw me, and Jo never left my side. Many doctors came and went, and talked to me about what happened and how I was feeling. I had to keep the catheter in because I was going back to surgery within 2 days time, so there was no point in taking it out, and that was the most uncomfortable thing ever. The night before my surgery, one of the residents came in and said " I hate to be the bearer of bad news, but I'm going to have to shave a little off your scalp for the stickies so we have a better view." So, I sat up and he shaved 4 spots on my head and left. I cried, and it wasn't because I now looked like I was balding, but because it was real again. I was going to wake up and be going back to surgery. Sure enough, the next day ( 26th, now), it was happening again. The second time around, for me, was the harder. It was just the fear of doing it again.  I just kept telling myself " I'm going to go to sleep and wake up". 

That's what I did. I went to sleep and woke up to the same thing. The CAT Scan room, this time they put me on a backboard and all I could do was apologizes for being of the larger girth than most. Most of the people shushed me and I just went back to sleep.  

I was in the hospital for a week. My shoulder hurt but my nose wasn't that bad. Tender, but not as bad as I thought it was. Dr. Aldrich saw me, and told me they got it all but a tiny sliver back next to an artery. He said it would of been more risky to get it than it was to just leave it and let radiation take care of it.  The fact of the matter was I was alive, and most of the tumor was out. And  I was happy with that. 

I was blessed with a good staff, both in the OR and out. I didn't really have a nurse or caregiver that I didn't like or love. My girlfriend was able to stay by my side nearly the entire time and I even had 4 friends visit me, and they spolied me with cards, a shirt, balloons and a little hand made sloth doll. But, I was just delighted to see them. I even showed for them, which I'm sure if they had known, they would of thanked me. Because.. I was smelling like a hospital! 

When I was finally released, I came home to my mom, kid, girlfriend and aunt. My Aunt came into town to help take care of my kid and myself while  was down. She spoiled me rotten as she normally does, and I had such a good time visiting with her. 

Fast Forward till now. 

I'm okay. My smell/taste is back to normal. My nose, though still tender, is no where like it was annnnd my shoulder doesn't hurt anymore! I Just saw the man who discovered the tumor ( who I cannot thank enough, he basically saved my life) and had a check up with him. He is beyond pleased with how I am doing, my eyesight is 100% again, annnnnnd he even did some magic tricks for us. :D Dr. Kelman is a blessing and the most wonderful man I have ever met in the medical field. I love him to bits and hate that I may not see him for a long long time. 

Dr. Kelman doing magic for my kid, and blowing my mom's mind in the background.,

Thank you to the man who saved my life. 

Today I saw the radiologist and talked to him about going to Philly for my Proton Treatment. I'm off work until August, which is stressful. But needed. 

But, we will talk more about that later. 

So, in conclusion. 

So Long Larry. 

Ps. 

I'm winning. 

6 hours to go..

Dear Larry,

Here we are. Its midnight. The house is settled down, my child isn't going batshit crazy anymore, my mom is calm and trying to sleep, my aunt isn't scurrying around rearranging and deep cleaning everything. My girlfriend, however, is still as busy as a bee finishing up last minute things and refusing to allow me to lift a finger. But, most of all,  I can no longer eat or drink anything.

And I've never been more hungry or thirsty in my god-given life.

It is weird the things that go through your mind before surgery, stupid things. Like: What type of jam-jams I should wear. Should I shave my legs again? Can I wear a pony tail? Are they going to put the catheter in before or after I'm knocked the heck out? What time should I be there? ... Is it still happening?

Holy crap, is it still happening?-- Yeah, I totally freaked out about that just a moment ago. We realized that I never got a call to confirm the time of arrival today. I was supposed to. Buuuut, I never got a call. So now, I'm scared to death I'm going to show up and they'll be like " Oh, well, it's not until 3." Or " Wrong day, it's tomorrow." Or " .. You missed it. It was yesterday." For the love of jeezus, I hope I didn't miss this stupid surgery.

Stupid surgery.

I shouldn't say that. I mean, it really isn't stupid by any means. Its super complicated and there is going to be people smarter than I probing things up my nose to remove a type of cancer-tumor from under my brain. Plus, it would be smart to get the surgery because.. ya know, tumor-removal tends to help the ol' life expectancy a bit.

...Ugh. Hungry.

But, on another note. I want to take this time, mere hours before my surgery, to thank every single person who has supported me and sent prayers and well wishes to me. All of those who took the time out to make me feel special and loved. I can never repay your kindness, friendship and love. Thank you from the bottom of my heart.

I want to thank Jo, my girlfriend, for never leaving my side through all of this living hell. I have no idea what I would do if I didn't have you by my side. Thank you for keeping me level headed and being my rock when I felt too weak at the knees to stand. You're my heart and soul and I will never be able to thank you enough for all you've done for me and my family. I love you so much and I look forward to spending the rest of my life by your side.

Mom, thank you for being as strong as you can be and making sure all the tough questions were asked and keeping me level headed. I love you dearly.

Dee, thank you for flying out here and taking care of us. I've missed you dearly and it means tons to me that you're here. Thank you to the rest of my family for calling me and texting me well wishes and tons of love. Also my blanket, which will always be near to me at the hospital.

Jonathan, Kate, Melody, thank you for being the best friend a Gal could ask for. Always being an ear and a shoulder to talk to. For the laughter, love and fun. Thank you so much.

Mark, Meredith, Hibby, Legs ( Pak), Jason, Erica, Greg, Lisa, Mel, Elise, AJ, Taryn, Andy and the risk Team, Tony, Steve, Boyd, and everyone else at work. Thank you for making my last couple of weeks at work filled with love and laughter. I couldn't imagine working with a better bunch of people. Love you guys.

And everyone else who I didn't say by name, thank you for being there. Thank you for reaching out to me, letting me know you care and you're thinking of me. Thank you for all the prayers and well wishes. Thank you for filling up my facebook with love and support. Thank you for making me feel much loved.

I'm done. But, really, guys, all of you. Thank you. This will be over soon and I can get my life back. I'll also, hopefully, get my eye back as well! Because, lemme tell you, you never realize how much you look to one side until you're eye stops working at a certain point and you look cockeye'd.

That's all I got. I may post again before surgery, but probably not. For sure after, though. When, ya know, I can function again.

Thanks again, everyone. Catch you on the flip side.

-Tara

P.S
Enjoy your last night Larry.

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

Less than 30 hours to go..

Dear Larry the Tumor,

It's been a while, hasn't it? It has been a whirlwind of emotions and ups and down. You were supposed to be out already, the 10th was our first date, remember? Well, that didn't happen..


It was a couple days before the surgery was supposed to take place, I was already off work, FMLA/Short Term Disability already about to start, pre-op appointment done. I get a call around 10 from the doctors office. It wasn't a call I was expecting, so I answered it with some reserve. It was a short call, mostly filled with me stammering to figure out what I should say to " Tara, we have to change the date of the surgery, the doctor has too many surgeries as an emergency case came in. We'll have to move it to the 24th.".. I just was taken aback. I completely understood the need to change it, I honestly did. Someone's case was more pressing than mine, and I would much rather than them to go first... because, lets face the fact Larry, you're not leaving or moving anytime soon without some assistance from a highly trained medical staff. But, I was still a little crushed. I mean, I am totally not excited about surgery, but you get mentally prepared and ready for everything to happen, and when it gets changed it is like you have to start all over again. My aunt was about to come out and everything, work had already worked with me.. and...-- well, it was what it was. It was just draining emotionally.

But, here we are now. It is officially the day before surgery.. 12:37am as I write this sentence. I'm off work, dates have been changed, FMLA back on track, my Aunt is here making my house both physically and mentally better. I've done absolutely nothing but shuffle around the house in a state of indifference. I don't know how to feel. It is coming, no matter what I say or do. It is happening.

There is just so much I feel like I didn't get done, Prep things that I neglected because I didn't want to think about. I feel like I'm forgetting things. I feel like I didn't spend enough time with people. I just need more time. .. I just need this to be done. I just want to get this over. Ugh. Just.. ugh.

Well, I'm done bitching for now. I'll write more a tad bit later when I can concentrate better.

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