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.

The Art of Conversation

Talking.

When we do it for the first time, everyone rejoices!

Your Mama probably remembers your first word, right?

Well, I remember his first word after the first surgery.

“Honey”

That’s ME!!

He can talk.

And then I realized that that was all he could say…

Talking comes so easy to all of us.

We do it everyday.

“Hello”

“How have you been?”

“How are your children?”

“How is your family?’

But, are we really listening to all of the answers?

My plea to you today is to LISTEN.

Listen to the glorious sounds of your loved ones voices.

Just listen.

To your children.

To strangers that you pass on the street.

Relish the art of conversation.

Relish the sound of your own voice.

Hear it.

Better yet, use it.

Challenge yourself to talk and listen.

Remember that first word and how everybody got excited about it?

Say it.

Because you never know when your words will be taken from you.

You never know if you will have to relearn the art of conversation.

It’s beautiful.

So, today, my friends, take a moment and talk.

Listen to the sound of your own voice and rejoice in the fact that it comes so easy to you.

Because one day it might not and you and I both don’t know when that day will be.

A Discovered Treasure

Today is a day like any other. Chris started out pretty good and then got worse. He may rebound and we have a good evening, but you never know. Our life is a roller coaster. Of good, bad, scary, ugly and nice.

I wanted to share something that Chris found today. He was looking through the “Notes” section of his phone and found a letter he wrote to any and all of us two days before his surgery. It took me a while before I got up the nerve to read it, much less write about it. It is personal and, well, just like him. If you’ve known him for a while, it will touch your heart. If you don’t know him at all, it will touch your heart…

“Now, this is a story all about how, my life got flipped-turned upside down”….
To whom this should concern, 
Something just felt off… 
I went to my doctor because I keep having these episodes where I forget the English language, I can’t speak, then when the English comes back, I still can’t speak, it’s baby talk. These episodes only last a minute or four and have now been going on for 16 months. I finally told my doctor about the “episodes” along with migraines I’m now getting, as well as my reading comprehension is going down hill. Words and letters seem to be backwards sometimes and it takes a while to understand what I’m reading and writing. He gave me a referral to a neurologist to get checked out. So, at the end of January 2016, I had a MRI and they found a tumor the size of a tennis ball. After the MRI my doctor called me into his office to tell me the news. I mean, what do you say to that? My fiancé and I were shocked! My neurologist told his assistant to send over everything they had to Duke and Dr. Allan Freidman and expedite the process. I applied for a life insurance policy the second we got home from the neurologist(You’d think a 35 year old would have one by now). That day I received a call confirming an appointment at Duke University the following Tuesday. That meant I wasn’t going to able to be seen for a week (Years in brain tumor days). But when I finally got to Duke and met the surgeon, the anxiety started to go down. Dr. Freidman is a funny individual. He walked in and introduced himself, and said “Let me take a look at you. Open your mouth, how many fingers am I holding up, spell the word “world”, now spell it backwards, now tell me how many nickels in a $1.25? Well, Chris there’s nothing wrong with you and you’re perfectly fine! Except the tumor in your head. We can do one of two things. One, we can monitor the tumor and see what happens but with the looks of this tumor it’s going to grow 5mm or more per year, causing more damage and the symptoms will get worse and eventually kill you over time. Or two, I can take it out by performing a craniotomy. Mind you, I can’t tell you that your symptoms will get better. They may get worse. There’s also a chance that you may develop more problems after surgery but I can tell you this, that if I take it out now you’ll live a lot longer than leaving it in. So, when do you want me to take it out?” I kind of chuckled and asked, “What was the point of telling me option one?” He just stared at me and I looked at my fiancé and we said as soon as possible. He said, “Great! I’ll put something on the books! Do you have any questions?” I asked, “What happens during a craniotomy, how long does it take, how long will I be in the hospital, is it safe and what’s the recovery time?” Dr. Freidman proceeded to tell us recovery is anywhere from 8-12 weeks, be in the hospital for 2-7 days, and surgery will be 3-9 hours. Everyone’s situation is different. He gave a synopses of the surgery, said we’ll wake you up in the middle to make sure that your basic motor skills are working and then put you back together. “Hold on! Back the truck up!! WAKE ME UP?! WITH MY BRAIN EXPOSED?! Like Ray Liotta in Hannibal?!” SHUT THE FRONT DOOR!!! He said, “Yes, we need make sure your motor functions are still working. Don’t worry, you’ll be fine and your brain doesn’t have any feeling. Anything else?” So I ask, “So… Can I take a selfie when I’m awake… With my head opened up?!” The left arm of my fiancé came across my chest REAL quick! I looked at her and looked at him, and he said, “No.” Very sternly. He was not amused. Someone came in after the doctor left, gave us a folder about as thick as the bible and explained what to do and not do before and after surgery. So here it is 2 days away from surgery. I’ve kept busy by doing research on brain tumors/cancer, getting the house ready for when I come home(I’m nesting like I’m about to give birth), making Plan A and Plan B. I’ve kissed and made up with some friends and family. And after 13 years and 2 crazy/beautiful children, me and the woman got hitched! No regrets, and don’t sweat the small stuff are now our mottos. I’m scared for my wife and kids. Scared for my mom, dad and brother. Hell, I’m selfishly scared for myself. I’ve thought about making videos for my children in case I don’t wake up from surgery or if I lose the ability to ever speak again. My daughter changed my life 12 years ago went she entered this world and she’ll always be my baby and I want her to know that. I want my 7 year old son to know he’ll always be the baby. He’s my buddy. My sidekick. He’s the balance I needed in this house of crazy and estrogen. I want to tell them both to always be respectful, respect yourselves, respect others and their beliefs, use your manners, be kind and put others first, but put time away for yourselves. Don’t sweat the small stuff. Be thankful, take care of, and enjoy everything you have in your life. Don’t worry about what people think of you. Be who you are. Unless you’re an asshole. Don’t be an asshole. Common sense. USE IT!!! I’ve prayed for everyone to be at peace with what ever happens (That’s right.. I prayed. Don’t judge me). I’ve told my family and a few friends what’s going on. They’re very supportive. There are friends that I haven’t told yet, but I think I should. I’m ready to get the surgery over with. We’ve hoped for best and planned for the worst. That’s the best we can do right now. I’m out of words and thoughts to keep going right now. I’ll blame it on the tumor. You have to take it with a grain of salt. Laughing about it makes it a little bit easier. Thank you for lending me your ear. Hopefully, I’ll talk to you on the other side. 
Sincerely and respectfully,
Chris
This. Just this. You all know how I feel about this man. You all know that he’s my end all and be all, but this left me speechless. He’s “selfishly scared” for himself?
The moment I thought I couldn’t love him anymore, I do. Exponentially more. When his door closes on this disease, most of my heart will close with it.
So, now you know. This is what a man thinks about two days before an awake crainectomy. A selfless man with a heart so full of love.
But, not just any man. My man. My love. My heart. My soul. And the man that used to be (and always will be in my soul) my forever and a day.

Being the “Cape Holder”

Well, it’s been a while, my dear friends.

And there’s a reason.

Last month, at Chris’ appointment with his neuro-oncologist, we got some pretty scary, but unsure news.

They thought his tumor had returned with a vengeance.

They thought we were running out of time.

That’s why you haven’t heard from me. I’ve been holed up and scared witless for this day.

Today was the appointment for a repeat MRI and meeting with the oncologists to discuss “options” and “time”.

TIME

That thing that you never have enough of? That thing that you lose track of?

But, for me, it’s the one thing that I so desperately wanted.

Just to hear that we have more time.

So, today begins like any other day. The sun comes up and the birds sing and I open my eyes to the thought of losing him.

He goes for his MRI and comes back home to get me.

I’m almost ready and we get in the car. I’m chatty. Nervously chatty.

As I’m driving, I look at my watch. “OH NO…WE ARE LATE!”, I said. “No we’re not. I told you that the appointment was at 1 so we’d get there by 1:30. My appointment is actually then.” I had even written this date down on a pretty sticker in my EC planner. Highlighted and all. One O’clock!

And that is how much this man knows me…

So, we arrive. His mother is there and I’m glad to have some one to lean on.

We go up the familiar elevators and go check in with the nice ladies at the front desk. They are always so sweet to us. Maybe, they think Chris is cute.

And then it’s time to go back.

I wanted to faint and scream and laugh and run and skip and fall.

I didn’t know who I was or where I was going, but all of the sudden I knew what I was doing.

I was holding the cape.

You see, Chris is my superhero. My own personal Superman and my children’s own Superdad.

So, in that moment, when everything in me wanted to run, I stood behind him and held his cape.

He didn’t notice, but in my own way, I was letting him lead the way like the strong and amazing soul he is.

And he led us.

And we sat.

And finally the doctor appeared.

With a smile on her face.

“Your MRI looks great!” she exclaimed. “Much better!”

Chris’ mom and I look at each other in relief.

I look at Chris and see tears.

The doctor then goes about telling us that the mass that was there last time has shrunk significantly.

Y’all, significantly.

She pulls up the MRI pictures and there it was.

Or wasn’t.

It looked smaller, even to a lay person like me. You could see a HUGE difference.

The weight I’d been carrying for a month suddenly lifted and I knew I had it.

TIME.

The doctor says “This is the best MRI we’ve seen all week! I’m proud of you!”

And I was, too. Proud of that man, sitting in that chair, struggling to talk , but still smiling that gorgeous smile and being the part of my soul that God misplaced when I was born.

So, comes time to leave. And I let him lead the way. Me trailing behind, holding his cape. We aren’t out of the woods, nor will we ever really be. But, I just got a few more years with my Superman…

Embrace the NOISE…

Snoring.

Slurping.

Humming.

Drumming.

Mumbling.

Repeated questions.

Footsteps up and down the hall.

Over and over.

Constantly.

Screams and cackling.

Dogs barking.

Cats meowing.

Loud music.

The TV volume at exponential levels during SportsCenter.

Doors slamming.

The refrigerator opening and closing a thousand times.

Cabinet doors unhinged.

Toilet seats dropped.

We all have a list of these things. These things that bother us. These things that get under our skin. These things that drive us to yell and holler and act crazy because that’s what we feel like we are.

Crazy.

Driven to that point by the constant noise.

The constant noise of life.

Of a family.

I have asked myself this week a very profound question and it’s taken me a while to actually answer it.

What would I do if the noise stopped?

What would I do if quiet fell over my home?

I laughed at first and thought, “Oh, how I’d love to have a quiet house! With no fighting or slamming doors or running up and down that long ass hallway! Bring on the quiet and bring it on NOW!”

Then, reality hit me smack dab in the face and I realized something that I should’ve known all along.

I love the noise.

I love the sound of little feet running up and down my hall. I love the sound of the raucous play and laughter that it brings.

And I love the sound of his snoring.

Without it, there’s no him. There’s only me.

Alone.

Quiet.

Please, understand that I’d like to not miss 15 minutes out of every hour of sleep, but this comes with a price. A price I’m willing to pay.

You see, I don’t know how long I’ll get to hear the sweet sounds of those snores. It could be a year. It could be ten years.

We all know that our children will grow up and the pitter patter of little feet will go away. The slamming front door will stop and the fridge will stay shut.

These are things that we, as parents, know will happen.

It doesn’t make it any less hard, but it happens at a slow pace and is something we can prepare for.

We all know we’ll have that treasured “Empty Nest”.

See? There’s even a name for it.

But there’s no name for “Empty Bed” syndrome, unless I just coined it.

We don’t talk about how wonderful it will be to spread out and hog all the covers.

We don’t talk about it because no one wants it.

I might for a night or two.

Even a week. But somewhere deep in my soul, I need to hear the snoring. I need to huff and puff over the stolen covers.

I need this to breathe.

Because I know what it means when the snoring stops.

It means that half of my soul has been taken and all that is left is silence.

So, for now, I’ll embrace the noise.

I will live for the guttural sounds of sleep.

I will live for those feet dancing down the hallway and his yelling for them to stop.

I will live.

At least for as long as he does.

A Week of Yes and No’s

Padgett Magic Team

I can’t arrange the thoughts in my mind.

They’re all too loud. (Thanks, Jodie)

The past week has been a blur of too much and not enough.

We’ve had the 3K walk for the Brain Tumor Center at Duke last week. Followed by a week full of paperwork, rejections and a doctor’s appointment.

Then, we ended the week with a 5K that some of our dear friends ran in Chris’ honor.

Needless to say, the week was full of up’s and down’s.

The 3K walk at Duke was wonderful. A magical group of people that actually know the pain that I feel on a day to day basis. A gathering of souls that are beaten down by the word, “Brain Tumor”, but still manage to rise above the hurt and anger and fulfill their own or their loved one’s legacy. The main highlight being the group of survivors standing on a stage and beaming with pride out upon a crowd of people who wrapped their souls around their hearts and lifted them up. Probably higher than they ever imagined.

There was a lowlight, though.

A sobering reminder of my future.

A raw and unexpected feeling suddenly washed over me at one point.

The “In Memorium” shirts.

The team shirts with pictures on them. Printed with dates of birth and dates of death.

Smiling photos of people who fought the same fight my husband is fighting.

Smiling photos that reminded me of reality.

I was so happy to go to this event. So happy to take part in a walk with my family, with Chris by my side, holding my hand. So damn happy that, for a moment, I actually forgot the truth.

Chris’ brain cancer isn’t curable.

One day I will be wearing one of those shirts. One day my smile will be forced and my hand will be empty.

One day will come.

And that was the undeniable reality that I overlooked in my happiness. And I believe Chris felt that reality, too. His eyes were wide. His sentences shorter than normal. Obviously, clipped by fear. All I could do was rub his back as we walked and whisper, “I’m right here, love.” Only then would he smile. Only then did I see a glimpse of my fighter.

We left quickly. He was complaining of headache. And while I don’t believe he was lying, I do believe the headache was brought on by something more than four brain surgeries. I believe it was brought on by heartache. He’s only human and had a natural human reaction to what most would call a reality check.

So, we came home. Somber and restless. Needing to be busy and needing to rest.

My week was full of paperwork and tireless hours of research and phone calls. You see, I want to dot every I and cross every T. I can’t miss a thing. Be it a prior authorization for a new medication to phone calls to various and sundry doctors, doctor’s offices, government agencies, pharmacies, aphasia groups, home care nurses, speech pathologists, social workers and the occasional friend. Without constant diligence, my world will crumble beneath the weight of uncertainty. It’s all about keeping organized in a disorganized world.

And I do that. Stay as “on top” of everything as possible because the one phone call missed or the one email that doesn’t get sent could be the downfall of this teetering thing I call life.

I took Chris to the doctor on Friday and boy was he happy to get his stitches out! He wanted to cut his hair so bad he could barely stand it!

But, they didn’t take them out.

They weren’t ready to come out.

Another blow to his self esteem. Another no, when all he wants to hear is yes.

Damnit! Somebody tell this man yes! Give him control of at least one thing.

But, no.

No is all we have heard so far. And little by little, they are taking control of a man that once prided himself in his appearance and intellect. They’ve taken thirty five percent of his skull. He won’t say it, but I know he shudders when he looks at himself. I know he curses at the mirror. He gets frustrated when words don’t come. He knows they may never come. And he knows he’s lost control. Watching someone that fills your heart with overcapacitating love lose control is a hell I wish on no one. A hell I live every minute of every single day.

But, then there was Saturday.

How to explain the way Saturday made me feel? This is one of those times when words can’t possibly be enough. There’s no way I can explain how love and pride feel.

On Saturday, a group of our friends ran a 5K race in honor of Chris and his fight. There were tee shirts made and worn with his favorite catchphrase “Padgett Magic” on them. Team Padgett Magic was full of love and hope. I was filled with a sense of gratefulness that is undefinable. Watching each and every one of them cross the finish line, knowing that it was their love of Chris that propelled them to it, was beautiful.

You know what was more beautiful?

Chris’ face when he saw each person. I live for that face. His smile was big. His eyes sparkled and I’m sure I saw his chin quiver when he hugged one of them. He was happy, y’all. And it was the love of others that made him happy. I am thankful. I am grateful. And, for once, I was speechless. How do you say thank you to someone who spent their precious time getting special tee shirts made? How do you say thank you to the people that bought them and wore them with pride? You can’t. But, I hugged each and every one of them after they finished and exclaimed, “Thank you, thank you, thank you!”

They will never know how they touched my heart. They will never know the depth of my gratitude. I can only hope they know that my hug was genuine. And despite everything, they made me forget, if for only a moment, the reality of my life.

So, now we look forward to another week. Another week of diligent work and mindful living. Another week of our fight.

And that’s all I can ask for.

Another week.