Am I really “still me”?

Lost is a place, right?

Are you there, too?

Hi, everyone! Welcome to “Lost”! It’s the new and improved place we used to call “Here”.

We don’t call it ‘Here” anymore because we’ve moved away from “Here”. “Here” is a place from afar. A place removed from what is relevant and current.

Destination: Unknown

I’m at home in “Lost”. And that’s sad.

Sad, but true.

“Lost” is both familiar and painful.

“Lost” is not that far away from “The Past” and just around the corner from “Hindsight”. It is 20/20, no?

And “Lost” is just before you get to “Far, Far Away”.

“Lost” is both confusing and exciting at the same time.

It is unknown and to some, might seem tragic.

To me, however, it’s not tragic.

It’s home.

I’m ready.

Ready to get to know my way around “Lost”. It seems that I may be here a while and I might as well get my bearings in this place.

Most of the people that live here are pretty nice. My neighbors keep to themselves, but smile and wave, if waved to.

And I do wave.

Every damn day.

The sights in this town are pretty nice, too. Old homes with character surrounded by new growth and change.

“Lost” has pretty great schools, too. With teachers that seem to actually care. Teachers that take the time to know their students by name and learning style.

The students seem to reciprocate with a sense of simple splendor. With a joy of learning! They converse in small groups out on the patio, while teachers smile their knowing smiles.

“Lost” even has a big chain Super Store!

Hooray, for “Lost”!

One day, we’ll catch up to the big city, but as of now, we’re pretty proud of our Super Store, thank you very much.

“Lost” is an easy commute to the finest jobs around. And, as luck may have it, my job, too. I love my drive to work from”Lost”. It’s a quiet and serene time that I can hear myself think. No one needs to be tended to and everyone can hear me.

I’ve found a nice niche in my little part of “Lost”. Albeit small, it’s mine.

I will miss “The Past”, but I’m not there anymore.

Now is the time to revel in the here and now and appreciate this thing we call life.

Do you appreciate life? Or do you, like I, take just about every minute for granted?

Geez, guys!

Let’s start the new year with a pact, OK?

Let’s be happy and content.

Whether we live in “Lost”, “Far, Far Away”, “Here”, “Now” or “In the Moment”.

Let us appreciate and savor every hour we get.

Every minute.

Every hour.

Every second.

Why?

Because before long we’ll be living in “Gone, but Not Forgotten” and I for one, want to put the final move off for as long as possible.

So, I will live in “Lost”.

I will love in “Lost”.

 I will be in “Lost”.

And for once, I’ll finally just be “me”…

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Everything stays the same…

Everything stays the same.

Time is passing.

Leaves are falling.

Costumed children have tricked their treat and turkeys are starting to get scared.

Yet, everything stays the same.

Chris has had two, two month check up’s since I last wrote. To be perfectly honest. I didn’t know what to say.

Everything stays the same.

His doctors are happy and we’re excited! His tumor isn’t growing.

Yes, Chuck is still hanging out in his brain. but he’s not growing.

Every single time we hear this it gets more and more hopeful.

An “all clear” at the two moth appointment means more time.

Chris, however, is struggling.

You know those steps of the grieving process? There are five and he’s knocking back and forth between steps two and four.

Anger and depression.

One day he’s happy and I see a glimpse of the man I used to know.

One day, he’s so angry that I can’t get a word in edgewise because he’s so damn mad at me he can’t see straight.

And then there are the days that hurt the most. The days that I watch that strong, amazing man crumple at the feet of cancer.

He doesn’t move.

He doesn’t talk.

He doesn’t…

I long for the “good” days.

The days that he laughs and sings in that horrible baritone that I love.

The days that the kids can joke with him and he laughs back.

But, more often than not, he has an anger or depressive day.

Now, I’m not saying he’s ALWAYS like this. I’m just saying that it’s hard to have a good day when you’re trapped in a three way cycle of happy, mad and depression.

He’s still Chris.

With his hat on, you might not know that he has brain cancer. He still looks the same. Handsome as ever!

The only things you might notice is his aphasia.

He talks with effort.

To someone who didn’t know, it’d be like talking to someone who’s distracted. Like talking to someone who isn’t really listening.

Except, it’s the exact opposite of distraction.

It’s extreme concentration.

Words are difficult and following an entire conversation takes as much concentration as he can muster.

Which is a lot!

You might not know he has cancer.

But, you do.

Other than the cycle of grief, everything is ok.

Everything stays the same.

The kids are starting back to public school and I couldn’t be happier!

Not that I didn’t enjoy homeschool, but I just couldn’t do it.

I’m good at a lot of things. Great at some. But, homeschooling wasn’t my forte and I’m ok admitting that.

So, today Doodle two started at the elementary school near our new house and Doodle one starts Monday in middle.

Ugh!

Where has the time gone?!

I’m sure they’ll love being around more kids their own age and I’ll enjoy being with Chris ALONE on my days off.

What’s that like?

I forgot.

We moved to a new town and although it’s only a county away, I’m tee totally lost!

I’ll find my way.

Right now, I know where the schools are and the gas station.

It’s weird to be in a new town.

A fresh start.

Will we meet new friends?

Will we enjoy and become comfortable here?

I hope so! I certainly do.

That’s that!

Chris’s two month appointment went so well. Although, his brain is still swollen, it has gone down exponentially in the last few months.

Although weak, he has the ability to get stronger.

His will to fight is still there.

And, although dealing with the tremendous burden of grief, he is doing well.

The kids are starting school and they are nervously excited! They don’t seem as scared as they were before and my heart is happy to finally see them enjoy education again.

We are ok. We are together and enjoying what it feels like to be a normal family. We are happy with the notion that we get more time. We are starting to remember what it felt like before cancer entered our lives.

But, it did.

Everything stays the same.

An open letter to my husband’s brain tumor

Dear Chuck,

Dare I say “dear”, you quarter sized asshole? Well, I guess I should, as I do want to be as nice as possible, so you’ll act accordingly.

My name is Allison. We actually haven’t met, but I’m sure you know my voice. I’m the high pitched, female, muffled sound you’ve heard for your whole life. You know? The one that at one minute is loving and sweet and the next minute reaches octaves only our dogs can hear? Yep. That’s me.

I thought I’d introduce myself so you and I could get to know each other better and you can begin to see things from my point of view. You see, I understand you already. You are happy and warm and just’a growing away in my husband’s cranium. I’m sure that grey thing that you’re pushing on, his brain, is nice and smooshy. I’m sure it’s pretty comfy in there.

Now, I know two weeks ago, when a mean man opened up Chris’ skull with a saw and cut about 75% of your gelatinous body away, you got pretty mad. Understood. That had to suck for you, Chuck. I mean, damn, I’ve never been cut into third’s, but I’m sure it’s no fun. I really do see that.

What I need you to understand and the reason I’m writing this letter, is I would like you to see things differently. You’ve been “in the dark” about all of the things going on on the outside of my husband’s skull and I think it’s time you have a reality check.

I fucking hate you.

Period.

You see, in the past year and a half you’ve been causing some problems and I’m going to need you to stop. I’ll start from the beginning and work our way up to now, so you’ll be able to get a true understanding of what life on the “outside” is really about. I assure you, this will be life changing and it is my hope that we can come to a genuine and adult agreement.

A few months before August of 2014, I’m assuming you took up shop inside what you now call your home. The reason I say this is because in that month, of that year, you began to show yourself.

I appreciate your subtlety in the beginning. Chris would’ve been really scared if you started off the way you do things now.

You picked a pretty crappy area to live. You see, you don’t know it, but you live at exactly the part of my husband’s brain that controls his speech and language. The part that allows him to talk, think and express himself. So, by growing right there, you started to effect his speech and cognition.

At first, it only happened every now and then. You’d grow and he’d not be able to speak for a few minutes. He’d not be able to think. Then, I think you got a little too comfortable and just grew your happy ass off.

From the outside, I didn’t know that, of course. I stayed oblivious to your devious course of action and watched the man I love suffer with fear and frustration. I watched in confusion as he would stare blankly for a few seconds. Then his eyes would show pure fear. Next he would try to speak, but NO, you wouldn’t allow that. You’d just push a little more. Finally though, he’d gain control again. Slowly, he’d fight you and he’d win. You tried your best, but damnit, he was stronger. Every time you tried to do this, even when you started to do it more, he fought. Why, Chuck? Why did you keep doing this to Chris?

We’d had enough of your antics and went for an expert opinion. This is when we finally saw you for the first time. I have to say, we were surprised. In your day you were a pretty large tumor. Albeit, gelatinous and gross. But, large nonetheless.

That expert was that man you met two weeks ago. The man with the saws and knives. He’s on our side, if you haven’t guessed and he pretty much despises you, too. Even more because he had to leave some of you in my husband’s brain.

Now, this is the part that I talked about earlier. The part where we come to an agreement?

You see, I love Chris. I know you need him for life, but I’m not sure that you realize that I do, too. He’s the part of my soul that God misplaced when I was born.

And there’s something else. Actually, “something’s” else. You know those tiny muffled voices that you hear all day? The laughing, crying, playing, loving voices? Those are Chris’ children. You probably didn’t know about them when you moved in. I understand that. That’s why I’m telling you now. There’s a girl. There’s a boy. And they need their Daddy. He’s their knight in shining armor. The foundation of their playhouse and the blanket of safety they sleep under every night. They love him. They need him. They deserve him. And you simply cannot take him away from them. Without him, they won’t have their Tickle Monster. They won’t have their Red Light Saber wielding bad guy or their handsome date for the Daddy/Daughter dance. His boy won’t know to open the car door for his first girlfriend and his girl won’t know that a gentleman does that every time. His boy won’t have a best man at his wedding and his girl won’t have him to walk her down the aisle and (much to his dismay) give her away.

See, Chuck? I’m going to need you to stop. Just stop. I’m asking nicely in hope that we can come to this mutual agreement without arguing. Arguing will only make things worse for you and Chris. Mostly you. You remember that mean man? Want to see him again? Stop growing. Do you want to be chemically poisoned to the point that you wither and shrivel? Stop growing. Want to be hit with a beam of light and burned alive? Stop growing. For the love of all things HOLY, STOP GROWING! (Sorry for yelling)

You can stay, Chuck. Just chill out. I mean, damn. Just leave him alone. Chris will give you that nice cushy home you’re accustomed to and we can all be one happy family. I’m all for it, Chuck. Chris, me, the kids and you.

So, from me to you, please hear my cry. Please, try to understand. Life on the outside is very different. Life on the outside is complicated.

What I need you to comprehend is that life on the outside isn’t life without Chris. It will cease to exist without him and with all that I am and all that I’ll ever be, I beg you. Leave him alone and let him live. Let him be the light that he is and let me keep that piece of my soul.

Sincerely,

Allison B. Padgett