A yay and a nay…

As we talk to the doctors, he waits in the silence of the unknown.

There is a moment that stops time completely.

What did the MRI say?

Silence

And then the words that I had hoped for….

“No growth”

Those two words are powerful. They have the ability to make me fly!

And I did!

I felt as if I was high above the Duke Brain Tumor clinic. High above the roof tops of all of Durham.

Much like I picture him.

He’s my Superhero.

The man that can do anything and everything, right?

But as I look at him right this moment…he’s alone.

What happens to our superhero after the big fight?

In movies you never see when Batman goes home and takes off the cape. Slips into his pajamas and goes to bed.

When he wakes up, stretches, pained from his fight and starts his day.

That’s what has happened to my superhero.

He sleeps in his chair.

Slumbers in loneliness.

The fight is over and it’s time to go home.

Only my superhero’s fight isn’t over.

He will fight until the end.

And, according to his doctors, the end isn’t near.

Great, right?!

Yes and no.

No because of the fact that everyone has left him.

Forgotten that his fight continues.

The excitement of his surgery and his post op infection is over.

And now he’s alone.

Why?

I don’t know.

I hurt for him.

I fold his cape and he slips into a painful sleep.

When he wakes he screams.

He hurts.

He hurts so bad that he wants to give up.

Wishes he’d never had his first surgery and had left the tumor in his brain to ravage his function.

He screams for it to stop.

But, does anyone hear him?

NO.

They’ve moved on.

Ones who told him that they loved and cared about him have gone away.

And he sits in this house and listens to a silent phone.

It amazes me how many people told him that they loved him and cared about him and would stay by his side.

I BELIEVED them.

He BELIEVED them.

And now he’s a man fighting alone.

He’s slipped into a dark place.

It must be the place that Batman goes to after the Joker dies.

Silent.

Unknown.

He gets the job done, but still feels as if somethings missing.

And there is.

I wish I could fill this void for my superhero, but I can’t.

All I can do is hope that they hear me.

I wish I lived in a world where my love was enough.

Where I, alone, could fill his heart.

But, as much as I want to, I can’t.

I am not enough.

But, you are.

And you left.

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.

One Week Later: A day in the life of a CANCER patient

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A day in the life of a cancer patient is just like the day of any person really. All except for that one thought in the back of their mind. “Is today the day that I become the past?”

We all do it. We wake up. Go about our days and never once think about the day that someone will refer to you in the past tense. “So and so WAS so nice. So and so WAS a good friend.” It never occurs to us to think that way. We haven’t been told that something foreign is invading our bodies or our brains. We go on about our day and are blissfully unaware of our own mortality.

Why do we do this? Because it’s easier. Because no one wants to talk about the end. Hell, we barely want to talk about the future. Much less, the end.

But to a cancer patient, the future is the end and now is all you have.

6:00 AM

Wake up. I hurt. I hurt bad. “What hurts?” Everything.

6:15 AM

So many pills. Do I need this many pills? “Yes, honey. Just take them two at a time”

6:45 AM

I’m starting to feel less pain. Is that right or am I still in a fog from sleep?

7:00 Am

OK. Pain is controlled. Not gone. Controlled.

7:30 AM

More pills? “Yes, honey. They are your steroids, remember?”

8:00 AM

I’ll drink this coffee and think about what to do with all of the junk under the carport “Honey, time for your medicine.”

8:45 AM

Should I blow off the driveway? I should blow off the driveway.

9:00 AM

I’m going to blow off the driveway

9:30 AM

Blow off the driveway

10:00 Am

Driveway looks great! “Honey, time for your medicine.”

10:30 AM

I’m going to get this junk out from under this carport!

11:00 AM

Damn, my carport looks nice!

11:30 Am

Come look at the work I’ve done! “Honey, you’ve done too much, again and it’s time for your medicine.”

12:00 PM

“Medicine, love!”

1:00 PM

What a nice conversation I just had on the phone! My speech is getting a little better…at least I think that it is?

2:00 PM

“Do you need medicine right now, love? One or two? Whichever you need.”

2:30 PM

 “I wish you’d take a nap!” I wish she’d just leave me alone. I’ll sleep when I damn well snnoorreeeeeeee……….

3:30 PM

“Here comes the steroid train! Choo Choo!” Oh my God she’s a dork, but you gotta love her.

4:30 PM

“You need to eat something.” I’m not hungry.

5:15 PM

I’m so hungry. What’s for dinner?!

6:00 PM

“It’s pain medicine time, love. Do you need any?” Just one this time. Just one.

7:00 PM

“Time to clean your staples. They look so good!!” How can staples look good?

7:30 PM

“Time for my muscle man to take his steroids!!” Wow. The woman will do anything to try and make me laugh.

8:00 PM

I think I’ll watch TV

8:30 PM

There’s nothing on TV

9:00 PM

Yes! Harry Potter on ABC Family! Score!

10:00 PM

“Anti seizure medicine and pain meds if you need them” Just Anti seizure for now, thank you

10:00 PM

Sleepy Time

12:00 AM

whisper “honey, it’s time for your medicine. here’s your water. i love you.” Ok, ugh.

2:00 AM

whisper “honey, it’s time for your medicine. here’s your water. i love you.” Ok, ugh.

3:30 AM

whisper “honey, it’s time for your medicine. here’s your water. i love you.” Ok, ugh.

6:00 AM

Wake up. I hurt. “Where do you hurt, love?” Every damn where.

What will you do today? What will your choices be? Will you choose to stay complacent or will you look outside yourself and reach? Reach for that one thing that’s been in the back of your mind for years? Step outside your comfort zone and break the mold? I think you should. I know you should.

Because one day, all of our names will be used in the past tense.

Brain Tumor: My heart is full

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On this, the fifth day of Chris’ recovery from brain surgery to remove the golf ball sized malignant tumor from deep within his brain, a dear friend has set up a GoFundMe site to help our family. It is with a full heart and humbled joy that I share this link on my blog.

The family and friends that have prayed for us and sent words of encouragement cannot be thanked enough.

How does one thank someone for reaching in their heart and asking their God to watch over and guide the man that I love more than anything in this world?

How does one thank someone for reaching into their wallet without a second thought to help my husband and my children?

How does one say thank you for someone simply filling my heart with love and support?

The answer is, that I can’t. I can’t say thank you in the way that I want to. I can’t wrap my arms around someones heart and let them feel the warmth that I feel and have felt for the last few days.

Chris’ diagnosis has changed our lives and I believe it has changed some of yours, too. The comments that we have received have been so heartfelt that I know honesty and love has overflowed.

Please know that this hasn’t gone unnoticed. Your words haven’t gone gone unread. I have shed many tears reading your true feelings.

In the path of life, we all tend to drift apart from one another. We tend to forget the times that we shared and the good feelings that we made each other feel.

Through your comments I can hear your voices. I can hear your tears. I can feel your prayers and I can feel your truth.

Chris is loved by so many people. Even more than I think he ever imagined. His heart is bursting and as he would say, “I’m leaking”.

He has wept from your outpouring of love and I have wept from watching his reaction to the love that he had forgotten about.

Thank you for sharing yourselves with him, again. Thank you for showing him that he is loved. Thank you for being the foundation that we, as a family, can stand on when we feel as if ours has been pulled out from under us.

Your prayers give us hope. Your love fills our hearts and watching Chris react to your love incites a feeling in me that I can’t explain. No one will ever love that man more than me, but I am realizing that you, his friends and family, love him and support him. You see the Chris I see. You see the man that he has become. You see the man that gives his heart and soul to everyone and never expects a thing in return.

You have brought a light to his eyes that was darkened by the word cancer.

Thank you

I wish I could wrap my love around each and every one of your souls.

 

https://www.gofundme.com/j7sr6yuk