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.

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.

Surgery number FOUR: Infection NO MORE?!

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So, guys, it happened again.

The man I love has endured, yet another surgery.

This will be number four, if you’re counting.

Here’s the story:

On Tuesday of this week I noticed some clear drainage coming from Chris’ incision. Not a lot, by any means, but enough to make me call the doctors office.

They made him an apt to be seen the next day, but the drainage had stopped and his wound looked great so we didn’t go. (Hindsight says that this was actually a good thing)

Thursday rolls around and he gets out of the shower and his incision has popped open in one place. No drainage or redness. Just a popped stitch. I, again, called the doctor and made an apt for the next day.

Friday he gets out of the shower and there it was. Green pus. (I know it’s gross, but it’s what happened) So, we go to his appointment as scheduled at 0930 and they wouldn’t even touch him. They looked at him and then looked at me like I had brought in a dead raccoon or something. Like they just couldn’t believe it. They called Dr. Friedman’s primary nurse and she came, as well.

Y’all, she looked at me like I had stuck a knife in his head and turned it. She asked me if I had been giving him his antibiotics. Yes. She asked me if I had been cleaning it. Yes. With what, she says? Peroxide and warm water, just as instructed. Well obviously you haven’t been doing that or he wouldn’t have a reinfection. EXCUSE ME?! Um, uh what? I’ve done everything that I was told to do, the way it’s been told to me and I even check on the man while he sleeps. I literally set my alarm to check on him three times a night. Just to make sure he’s ok. So, no, bitch. I’m pretty sure this isn’t my fault. Have you been putting the Bacetracin on him? No. he does that when he gets out of the shower. Well, that’s your problem. Some Medic you are…..

Just like that.

I was so shocked that I didn’t know what to say and I just told her that it’s not possible that something of this magnitude could be happening from me not putting on an ointment.

She took us directly to Dr. Friedman’s office. He was in a meeting, but called us directly in, much to the chagrin of the doctors he was meeting with.

He looked at Chris. He looked at me. He looked at that nurse. “Obviously, the bone flap’s infected and has to come out. No amount of antibiotics is going to get rid of this infection when the bone flap has no blood supply. I’m going to have to take him back into surgery and remove it permanently. He will stay here at least on night and the infectious disease doctors will come see him, too. See you in the OR.”

And the nurse led us down to the pre op area, again, to do his admission. By this time she won’t look at me and Chris is in pain, so I told her to go ahead and take him back and I would sign all the papers and see him back there. She did.

I sign and sign and sign and hope he’s getting comfortable. Then I go sit in the waiting room while they situate him with IV’s and so forth. I sit alone.

Then and angel appears. Our friend Niki takes me back to see him. He’s still in pain. He’s not comfortable! The dr says he can’t sign the consent, so he can’t give him drugs. I’ll sign, I say! So, I did. And just like that, he’s comfortable. His eyes stop tearing and he smiles at me.

The doctors tell me the procedure and I have to explain it to Chris. He didn’t understand from before that they were taking his skull bone. Forever. He just didn’t get it. All he heard was surgery and he stopped listening.

So, I explained to my love that they were going to open him up, clean him out and then take the bone away. For good? Yes, love, for good, but in a few months you’ll get an Iron Man plate and be the coolest daddy ever!! But for now you might have to wear a helmet. A helmet? Yes, love, but we will decorate it and you can put so many stickers on it, it’ll be the coolest helmet anybody’s ever seen!! Ok, he says. Just ok.

Then, he’s gone again. With a swift kiss and I half hug, he’s gone.

Surgery wasn’t long. Maybe an hour and a half. The buzzer beeps!! It’s time to go to the little room and talk to Dr. Friedman…..again. His mom is with me. She’s crying. I’m not and I don’t know why. Maybe I was out of tears at this point.

Dr. Friedman walks in and immediately tells Lisa to stop crying. He says “This is bad, but it’s not those kind of tears, bad. He’s going to be ok.” He explained what they did and that the infection was, in fact, in that bone flap and that leaving it in wasn’t an option anymore. So, they took it out, cut his skin and muscle and stretched to cover the hole. He may have some pain from this surgery. More than before, but he’s going to be ok now.

So, that was that. We return to the waiting room and wait for the buzzer to go see him. What felt like a hundred hours and a meeting with the nurse anesthetist later, it buzzed! I powerwalked like an old lady. Not a full run, but a walk with purpose.

They told me it was time to go see him. Lisa hadn’t come with me because the nurse anesthetist had said he was asking for me (and said his brother’s name:)) But I asked the receptionist if he’d just asked for me this time. She said no. He hadn’t been specific. So, I yelled for Lisa and had her come with me. The light in her eyes made it worth it!

The man we met in recovery was a very, VERY happy man. Ketamine will do that to you. But, he could talk. Same as before, but no set backs this time!! He knew where he was and why he was there. No explanations and rounds of tears this time!!

He got a room upstairs and I had to go home to the kids. The doodles were worried and Chris had his Mama. My babies needed theirs. So, with another kiss and a nice long hug, I left. I was so tired that I had to call my parents on the way home to stay alert, but I did. I got home, ordered chinese food and laid on my empty, but comfy bed. I had the kids come in and I explained to them all that happened the best way I knew how. I haven’t seen Chris’ head yet, so I don’t know how to tell them what to expect, but I told them what I knew.

He called me one time before I went to sleep and I got so excited when the phone rang that I almost hung up on him! It’s him! It’s him! He’s calling ME!! All he said was that he was in pain, but settled into a room and he would call me when he could. But he called me, y’all!!

My man is strong. My man is hurting, but healing. My man will be home soon and I can’t wait to wrap my arms around him and see his smile.

Helmet or not, that man will be the most beautiful thing I’ve ever seen in my life.

Brain Tumor. The beginning.

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Loss of Speech

Weird.

Absent seizures

Strange.

MRI

Abnormal.

Brain Tumor

What?

Brain Surgery

Complicated, Painful and Scary.

Malignant Low Grade Glioma

No!

Chemotherapy and Radiation

Now.

So, this has been the way it has gone. In those few words, you can read the ends and outs of how a cancer is diagnosed.

This has been his life. His life that is now changed forever by the word cancer.

He is my husband and he has a malignant brain tumor.

The path to this diagnosis has been a strange and scary one. A path that I have resisted going down to such an extent that I, even as a Paramedic, whether consciously or subconsciously, chose to ignore the symptoms in hopes that they would go away. In hopes that they would just as suddenly vanish as they did start.

He started having “episodes”. That was what we called them. All of the sudden he would be talking and then out of nowhere, he would stop. Words had left him. His own language became foreign. It would take less than five minutes for him to regain his ability to speak and it came in phases. First, recognition. Second, sound. Third, unintelligible words. Forth, slow words. Finally, full sentences. All followed by a period of astonishment and fear of the event.

When they started to become more frequent, we began to keep a journal to try and pin point a trigger. Every time he had an episode we’d write down everything that was happening that day or night. From what he’d done (to rule out an anxiety or psychological insult), to what he’d eaten (to rule out a blood sugar/insulin imbalance), to what he’d drunk (to rule out an alcohol correlation), to his blood pressure (to rule out a potential cardiac condition) and even to his temperature.

Nothing made sense. There was no trigger. After many months of writing down everything, we realized what we didn’t want to know. There was nothing triggering this outwardly. It was coming from within.

After watching these episodes so many times, my educated guess was that he was having seizures. Absent seizures. Finally, he made an appointment with a neurologist. It took two months to get an appointment. Then an EEG was ordered. Then we waited another month for it to be performed. A week for results. Another week for a follow up appointment. Next, an MRI was scheduled. This is when I began to get scared. This was the step I was dreading. Three weeks later the MRI appointment came.

I didn’t go, but he was sending me messages throughout. He told me when he was going in. “Good Luck, honey” He then told me that he had to have another one. “Well, maybe they just didn’t get to see everything the first time” He then told me they were going to start an IV to do IV contrast “Don’t worry, my love. They’re just being thorough” Then he sent that they were waiting on the doctor to see the scan “Well honey. I think your doctor is just so involved that he wants to know how all his patients are” Then he told me that he was told to wait in a little room. “Honey, at least you’ll know what they saw and the doctor will be right down”

Then he showed up at home.

They had told him to go home and his doctor would call him that afternoon or he would see him in the morning. I’ve had two children naturally and these twenty four hours were the longest of my life at that time. The next day, at 1:00, we kissed the kids goodbye and headed out the door to get the news that I already knew. When the doctor finally came in the room, he began to explain how normal the EEG had been and that the brain waves weren’t the cause of his seizures. (I was screaming in my head for him to just talk about the MRI, but he insisted on saying so much about what was normal) Then he said the word. BUT. But your MRI shows a lesion. “How big?” It was about the size of a thumbtack. “Ok. We can handle this” The doctor then said he was going to start C on an anti-seizure medication and have him follow up with a neurosurgeon at Duke named Friedman. “The Alan Friedman?””Yes. But we might not get an appointment very soon, as he only sees patients on Tuesdays, so don’t worry if they don’t call you soon, but we’re going to send him a message and a copy of your scan to hopefully expedite your appointment”

Two hours later the top neurosurgeon in the world’s office called our home. “Can you be there in one week? The next Tuesday?” “Absolutely. Thank you.”

Really? That fast? Oh. Shit.

A week that felt like a year later, we are sitting in a beautiful office at Duke University Medical Center, when a slight looking, older man bounces in the room and introduces himself. It’s him! This is the man that going to finally tell C what’s really going on and can tell him what to do to make it better. “You have a brain tumor. We can leave it there and monitor it or we can take it out. When do you want to schedule surgery?’ Just like that. “Umm, as soon as possible” “Good! I’ll have someone schedule it and we’ll be right back” Then another man come in. “Surgery will be Feburary 29th. You’ll be admitted the night before and the surgery will be the next morning. Here’s a packet of information. Someone will call you with an exact time. It was nice to meet you. See you soon”

Fast forward just two weeks. C was admitted to Duke on Sunday night. I stayed with him for a bit and then left to go back home to the kids. Our Doodle’s were starting to get anxious and I thought me being home would help and it did.

Monday morning at 3AM, the kids and I were up and at ‘um and at Duke by 5:30. We got to briefly see him before they took him back. The best neurosurgeon in the world was doing C’s surgery in just a few minutes and I finally felt some peace. Hours went by. People came to give support and I don’t exactly remember all of them, but just them being there was so special. It helped. A lot.

Finally, the page to go back and see him came. His mother and I ran to the desk!! The receptionist said that he was asking for his wife. Only his wife. I felt so bad for his mother who I’ve grown to love as a mother and more like a friend. I said I was sorry. We were both crying and then they opened the doors and took me back.

As soon as those doors shut I could hear him screaming. Screaming for me! I ran. When I reached his bedside he was crying. I stopped crying and began to talk to him. I have no idea what I said, but he calmed down. So much so that the anesthesiologist began to cry. She said that the only thing he remembered after surgery was my name and then in recovery all he wanted was me. She had never seen a patient go from that agitated to that calm by just seeing someones face. I didn’t cry. I smiled. I held his hand and looked in his eyes. “All is well, my love. WE will be ok”

The night that followed was in ICU, but without complications. His pain was manageable and he could sleep a bit. I however, didn’t. I had spoken with the doctor. I knew his tumor was malignant. I knew they couldn’t get it all. I knew it, but chose not to tell him, so he’d sleep and be able to rest without the thought of the word “malignant”.

The next day we came home. Yes. The next day. His amount of fight is remarkable. His reaction to when I told him the truth was even more remarkable.

“All is well, my love. WE will be ok”