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…

A Week of Yes and No’s

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.

Happy is hard.

No.

I’m not ok, but that picture makes me smile. That’s why I put it there.

When you say it’s going to be ok, I know you mean it, but it doesn’t make it so.

When you say, “I’m so sorry!” and I say, “It’s ok.”

It’s not.

 No one could’ve ever prepared me for what I’m going through right now. No one could’ve said, “Hey Al! Guess what? Your life is about to get turned upside down. Ready?”

I would’ve said I was. I think we all think that we can do anything and I’m starting to think I might’ve been wrong.

I started my day at Duke last Friday helping a woman, obviously on chemo, up from the floor in the restroom and back into her clothes. I finished it, leaving my husband there, once again, with an infection that is hopefully on it’s way to recovery.

Karma is a bitch and I think she’s mad at me.

My thought tonight is brief.

I feel as if I’m at the end of my rope. I’m frantically searching for something to grab onto.

What does the one that everyone clings to grab onto?

This is not a pity party, y’all. I swear it’s not.  Chris is doing well and will hopefully come home tomorrow. He’s been fitted for his helmet and it actually looks kinda cute.

I just feel weathered. The storm is taking it’s toll and my eyes look empty. My soul feels pained. And to the best of my knowledge, I’m gaining weight.

Hold the ones that you love dear tonight. Rethink the ones that you don’t. No one or nothing is worth the pain that I’m enduring right now and if I can get just one person to see that, then I’ve done my job here.

Don’t let anyone or anything back you into a corner.

Stand up. Brush yourself off and give it another go.

Life is not perfect, but it’s precious.

Be positive. Do the most good and be the best “you” that you can be.

This just in…

 DUMC Action News, here, live on the scene of an apparent hostage situation currently in progress.

We have one hostage, a 35 year old man. And a male captor of unknown age at this time.

We are currently at the home of the 35 year old man where, my sources tell me, this situation has become increasingly volatile.

Authorities are on the scene at this time. They have brought in a negotiator to communicate with the captor and hopefully end this situation as soon as possible.

I will update you as information becomes available.

This just in.

We are remaining on scene, at the home of a 35 year old male that had been thrust into an unimaginable hostage situation.

The chief negotiator, Dr. Allan Friedman has been one on one with the suspect for some time. It appears as if he’s trying to remove him from the scene. Negotiations are in progress.

I will update you as soon as information is available.

This just in.

Our chief negotiator has left the scene. The suspect remains, but is seemingly less powerful and angry at this time.

Updates on the 35 year old man are as follows: He is in a lot of pain. He is having extreme difficulty speaking and is disoriented.

But, the negotiator, in no uncertain terms, said that the man will be ok.

Back to you in the studiNOOO!!!!

WAIT! There’s a new captor on the scene! I say this in hushed tones, as the situation is growing more intense and dangerous by the minute.

It appears that this new captor is trying to hurt the victim in a way that is indescribable at the moment. They seem to want to make the victim sick in some way. Negotiators are enroute back to the scene with follow up.

Chief negotiator Friedman says that, indeed, this is a new captor and he’s just as, if not more, sinister than the first. Both remain with the man in the house, but apparently the second captor has taken over negotiations. It’s anyone’s guess at this time on how this situation will proceed. Tensions are very high here.

What we do see now is a HazMat crew, dressed in full garb, headed into the house! They are using chemical warfare to try to neutralize the second captor’s strong hold on the victim. It will take time before the outcome of this extreme measure is fully understood, but as of now, they are saying the second captor has been neutralized. They have promised the use of more chemical warfare if he should try to regain his power.

This just in.

The first suspect still remains with the victim. He’s requesting ransom.

It appears that instead of taking the victims life, the suspect will instead take his full ability to speak and his cognitive ability.

What is this? What kind of captor takes a persons ability to speak and to think clearly? How could they be so cruel? So incredibly and undeniably selfish and sadistic? This situation is a first for me, folks. A first in my 36 year career.

Chief negotiator Friedman has asked the suspect if he can talk to the victim. The suspect has agreed.

The man has emerged! His is pale, slight and has a look of fear and confusion on his face. Friedman is communicating, but the victim can’t talk. No everyone. It’s not that he’s refusing to talk, it’s that for some reason, despite their best efforts, the captors have managed to get one over on the authorities at this time. I am just as surprised as you are, guys. I cannot fathom how this will play out.

The next step is to bring in the big guns. This isn’t what the negotiators want to do, I’m told.

The big guns include the use of radiation and a more intense chemical weapon than before. They are discussing options. They want to see how the suspect responds.

Right now the victim, the 35 year old male, is trapped. The situation seems hopeless. The captor wants more than the man will give. He wants his life, but the man is adamant that he won’t get it. His resolve is strong and his fight is obvious, even from an outsiders point of view.

I’m told now that we wait. Wait? What the hell?! We can’t wait. This man may die, I tell you!!

Chief negotiator Friedman has explained to us that in situations like this, it’s best to wait and if the suspect tries to create a stronghold again, they will use their other options. He also is explaining that the man, now a 35 year old man named Chris, will have irreparable damage from the suspect’s, now named Chuck, first assault. He will have to learn to speak again and he will have to learn to orient himself in a disoriented world. The man, it was said, can only speak a few words at a time.

Apparently, the suspect got what he wanted.

What kind of hell is this man going to live in?

That remains to be seen, at this point.

Authorities have left the scene.

This has been DUMC Action News, reporting live from the scene of a Brain Tumor and it’s friend, Serratia Infection.

Back to you…

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

The Diagnosis: Oligodendroglioma Grade III

Have you ever found a stray animal and not wanted to name it because you couldn’t keep it and naming it would make it yours? It would make you own it?

Well, it has a name.

Oligodendroglioma-Grade III

We own it.

 The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center

What a lovely place. What a big place. What a very easy to get lost and walk five miles in, place. I wondered as we rushed in, who is Preston Robert Tisch? He was clearly someone special. Clearly someone who made an impact with his life. I thought Mr. Tisch probably had no idea the impact that just his name would mean to so many people for years to come. And then I thought that Mr. Tisch probably would never know. Mr. Preston Robert Tisch is most likely dead. Forever associated with the very thing that took his life, but forever associated with the ray of hope that thousands of people seek out during the scariest, most uncertain time in their lives. The time when they hear the words, “You have a brain tumor.”

Dare we think positive? Dare we think the word benign? Dare we doubt the best neurosurgeon in the world’s preliminary diagnosis? I’d be lying if I didn’t say that a tiny, itty bitty part of me still believed in a miracle at this time. Naivete! But, nonetheless, a woman, in love with her husband, who wanted an answer that I knew wasn’t going to come.

Oncologists are like robots. They have to be, I guess. They can’t care too much about each and every patient they encounter because the nature of their very discipline has a high mortality rate. They try things on patients that work and then they try things on patients that inevitably shorten their lives. It’s all the nature of the beast. The beast called cancer.

Chris’ doctor is matter of fact, but with the information she had to relay, matter of fact was welcomed.

Brain tumors are measured in Grades, not Stages.

Chris has Grade III Oligodendroglioma.

There are only four Grades.

His cell proliferation index shows a high level of tumor recurrence.

He will be monitored with an MRI every two months for the next year.

At any point, during that year, the tumor recurs, repeat crainiotomy, chemotherapy and radiation will be discussed.

The chance that it will regrow or reappear is high, as some of it still lies in wait, deep within his brain.

Some people live for 15 years with a tumor of this magnitude.

Some people last only a year or two.

Genetic markers in Chris’ tumor suggest he lies somewhere in the middle of the life expectancy range.

He will continue on an anti-seizure medication to stop the “episodes” he was having, were they to somehow come back.

Chris agreed to participate in a clinical trial for a new medication that’s being developed.

He donated his tumor and doctors will use it to see if the drug will kill the cancer cells and at what rate. 

All in all, a close eye is what they want to keep on him and MRI’s will be very important in the next few months.

Any proliferation of cells by the first MRI in two months is something that could potentially kill him in less than a year.

Non-growth shows the potential for many more years of a happy life.

Only 34% of patients with malignant brain tumors live past FIVE years.

And that’s it. I have feelings about this list, but as of now the thoughts in my head are so loud that not a single, solitary emotion can be heard.

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

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.