Archive for the ‘Uncategorized’ Category

Thank You.

Posted: March 9, 2019 in Uncategorized

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Today there was an amazing group of humans who gathered to help me and my family and all I can say is thank you!

They come around a table, that seems to be a very sacred thing, and they sacrifice, also a VERY sacred thing.
My brain is very foggy from the latest round of chemo drugs.

But, my heart is crystal clear.
It’s full of love and appreciation.
Thank you SO very much to Jamey Lowe and Smoky J’s BBQ for proving the space and the gift of meat!!! You guys are truly awesome.
Words cannot express my appreciation for my dear friends who have made/are making this act of random love happen.
A lot of incredibly kind people have stepped up and given really cool items for the auction.
They have made, sold, and bought t-shirts.
They are serving BBQ today, and I can’t think of all of this without crying huge tears of pure gratefulness.
I can’t be there today because my white blood cell count is a little crazy, my immunity level is wacky. I wish I could be there to hug each of you and sing the Golden Girls theme song (Thank You for Being My Friend.)
Just know, I see you.
We will never forget what you have done for us.
Through all of the pain of the last several months we have seen something so much stronger than pain, fear, and cancer.
We have seen love.
We love you.
Luke and Diana
carbonatedjoy.com

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It’s Sunday morning and I’m laying in a hospital bed.

That’s really not where I expected to be.
I’m wearing the magic green gown that allows everyone on the sixth floor to see the unimaginable parts of me…sorry sixth floor.
It’s been a weird week.
The BIG news is that we have approval to proceed with the stem cell transplant at Duke. We already have a Doctor assigned.
We meet with him and the transplant team very soon.
We started the new intense round of gnarly chemo drugs, trying to find a new strategy against the belly bully.
Everything was going swimmingly.
I was getting slammed with the poison cure, steroids, anti nausea stuff that looked like milk.
Then Thursday came rolling around.
things got weird.
An unwanted, unrelated guest showed up to the party.
I suddenly had muscle pains in my belly.
I felt like I had  done about 1,743 sit-ups.
(Not that I’m really familiar with that feeling).
I was belching like a gastrointestinal challenged goat. Loud and very forceful.
My face looked like a fuzzy cherry tomato.
The straight shot of steroids that I was receiving seemed to have done a number on me.
So I went in for my treatment and tried to convey the level of next level pain I was feeling.
I met with a doctor and she pushed around on my stomach.
I had a quick CAT scan, with the promise that we would see the results within a few days.
I finished treatment and we went home.
I was still hurting bad.
Then we got a phone call, the CAT scans were in, which is a miracle in itself. The results weren’t good. I had free air on my stomach and we needed to get to the ER ASAP…you know it’s serious when they start throwing initials at you.
We were taken back to a small pre-op room where we learned we had a unwanted party guest named Diverticulitis.
Emergency surgery was required.
I got out of surgery at 2:00 am on Friday morning, We had some really good friends hanging out with Diana and Delanie in the waiting room, that means so much to me.
I woke up with a Colostomy (hopefully temporary). It’s like I have a whoopee cushion attached to me. It even makes whoppee cushion noises, that will be fun on elevators and other small places.
Yesterday, because of a beautiful combo of anesthesia, disease, and chemo drugs,

I started puking up unbelievably vile things around 11:00 am yesterday…
And I didn’t stop.
So last night I got a nose tube at 4:00 am that is pulling some unbelievably black gravy out of my stomach
THAT has really helped.
Although getting it into my nose was not a super fun sensation.
I feel better.
Once again my wife has proven what real love looks like.
She has given me sponge baths, helped me go pee, and stayed by my side.
Sometimes love and marriage are hard, but if you leave when things aren’t fun anymore, you miss out on the things that matter.
So, it’s Sunday morning and I laying in a hospital bed.
I’ve made new friends, but I’d rather be somewhere else.
In the meantime I am existing on ice chips, not a real popular diet plan.
I have heard from so many friends.
Thank you all for your prayers and good thoughts.
I love you!

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After a slight  T-shirt modification, I’m ready for chemo round four.

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It’s almost time to go back into the ring.
The fighter shuffles on the wooden stool in the corner, it is a bit too tall for him and his feet don’t quite reach the mat.
He is suspended.
The fighter takes a deep swig of orange Gatorade as he mentally prepares for the next round.
He is halfway through.
Three rounds are done, three more to go.
Each round has left a mark.
He is tired and twitchy.
He has found himself on the ropes, he has been punch drunk.
But, he will go the distance.
There have been celebrations as the bully has gone from a heavyweight to a welterweight threat.
But, the brawl ain’t over.
The fighter awkwardly jumps to his feet and pulls up his shorts.
He is tired and he smells really bad, like old mayonnaise and fried onions.
He tries to spit in the bucket next to the stool, but he misses and the saliva ends up on his chin.
That’s embarrassing.
In the last three rounds, he has learned how to throw a punch.
Now, he is learning to keep punching.
It’s not time to give up or get comfortable.
It’s time to keep fighting.
He is sluggish, but he needs to keep slugging.
There have been distractions, but the fighter has to keep pounding.
He realizes that we ALL have a continual choice, fight or quit.
He will fight.
His Trainer leans in and tells him, “Go out there and be a wrecking machine! Stay hungry! Don’t quit until you kill this thing to death!”
The bell rings…
Before July 9, 2018, I had never stepped foot in to an Oncology Clinic.
I was completely clueless about the C Word.
I thought that “Infusion Suite” was a Beatles B side single.
I know different now.
Now, I’ve spent quality time in several clinics, and they are all a little different. The furniture and the layout is different. There are different paintings on the wall. My favorite office has vibrant paintings of the beach and sailboats.
Every office is different, but ONE thing is the same…
EVERY clinic that I’ve visited has the exact same simple quote prominently displayed:
“When I found out I had cancer, there were two things I could do: quit or keep pounding…I’m a fighter. I kept pounding. You’re fighters, too. Keep pounding!”- Sam Mills Jr.
Sam Mills Jr. played twelve seasons as a linebacker in the NFL. He was a five time pro bowler. He finished his phenomenal playing career with the Carolina Panthers. After retiring he became a defensive assistant/linebacker coach for the Panthers. 
 
It was January 2, 2004, the night before a wildcard playoff game against the Cowboys. The Panthers were gathered for a team meeting. Coach John Fox had asked Coach Mills, who was battling intestinal cancer, to speak to the team, to give the men a pep talk. He talked about commitment, teamwork, and never giving up. Then he said the words that are prominently displayed in every Oncology clinic that I’ve visited.
“Keep Pounding”
The team got the message, against the odds, they went on to play in their first Super Bowl that year.
Sam Mill Jr. taught his team, with his words and example, how to fight.
Don’t quit.
Be relentless.
“Keep Pounding”
On good days…
“Keep Pounding”
On bad days…
“Keep Pounding”
When you face huge obstacles…
“Keep Pounding”
When the prognosis isn’t good…
“Keep Pounding”
When it feels like you’ve lost it all…
“Keep Pounding”
When you are worn out and you just want to throw in the towel.
“Keep Pounding”
Mills passed away a year later at the age of 45, but not without a fight.
He left a loud and lasting legacy.
“Keep Pounding” is the Panthers team motto, battle cry and favorite hashtag.
It’s a Panthers tradition for the team to select a “Keep Pounding Drummer” to bang a giant drum before each home game.
But, this is  bigger than the Panthers.
When Coach Mills cleared his throat and uttered these simple words, he was unknowingly giving a pep talk for every one of us.
We all have our own fight.
We all face our own bullies.
We are slammed by disease and dysfunction. 
We have setbacks.
Real life can punch you in the face.
Punch back.
Keep punching.
 
There’s an old quote by Allen Saunders that showed up in a John Lennon song: “Life is what happens to you while you’re busy making other plans.”
Sometimes life is easy.
But, sometimes life is hard and scary.
We find ourselves on dark, winding roads that are unexpected and overwhelming.
Keep walking.
 
Fight.
Go out there and be a wrecking machine!
Stay hungry!
Don’t quit until you kill this thing to death!”
Keep fighting.
Bang your drum!
Keep Pounding!
 
 

Kind words are flotation devices.

My voice is doing wacky things, suddenly I talk like a cross between Mickey Mouse and Marty McFly.
I’ve cried more in the last few months than any other time in my life, except for maybe when I was a baby, I don’t remember.
I don’t cry because of pain.
I cry because of presence.
I have cried big sloppy tears of recognition as I have felt the Holy Ghost with me, and when I’ve seen the dear ones who stand with us.
In life we encounter heartache AND hilarity, but in the midst of it all there is hope!
Believe BIG, and take time to laugh hard.
Goonies never say die, and I never get tired of watching The Goonies.
Most of the collars on my T-shirts are stretched out beyond repair, because we have to pull them to access my port. I now look like a old wannabe hipster with no neck muscle definition.
One year ago, I was getting ready to MC a Saint Baldricks head shaving event at a local brewery to raise funds and awareness for childhood cancer.
Sometimes you give.
Sometimes you receive.
Be willing to do both.

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We have watched hours of fixer upper shows on TV.
They usually involve an ugly old house and an attractive young couple.
They take place in exotic locations like Waco.
They go into the house and they fix it up, they make it usable and desirable again.
They slap new paint on the walls and install big shiny bathtubs in the master bathroom.
It’s fun to watch things get fixed.
Everything looks so new.
BUT, it’s not…
It’s the same old house/foundation with new paint and fixtures.
Over the years, I’ve prayed countless times that God would “fix me” when I have become aware of my brokenness.
It feels like I need some new paint.
I need to be fixed up.
I’ve also asked God to magically fix a situation or a relationship.
It needs fixing.
I’ve been praying those same old prayers about my new fight…
Fix me Lord.
But, here is what I have learned…
God doesn’t “fix” things.
He is not a “fixer upper”.
God makes things new.
Totally, completely brand new.
He renews.
He reawakens.
He brings rebirth.
I’ve been told that remission is the goal.
It’s a good goal.
It means that the disease is gone.
We are working towards that.
But, here is what I’ve come to realize…

Remission is awesome.

But it’s not enough.
I want renaissance.
I don’t want to be fixed.
I want all things to be made new.
I’m contending for a reawakening of body, soul, imagination, and purpose.
My Doctor can take me to remission, but only the ONE who gave me life can give me new life.
Here is what I’m learning…
God doesn’t want to fix me.
He wants to make me new.
I’m not a fixer upper,
I am total renewal.
But…
My perspective is so very limited when I approach my Creator with MY ideas about healing.
When I realize that God is all about making me new, It allows me to trust Him with what new looks like.
That is where my faith gets stretched.
That is also where I discover renaissance.
No matter where I land on the other side of this journey, I will be NEW!
I trust…
The God who makes ALL things NEW.
The God of renaissance.
The God of rebirth.
The God who is making me a true renaissance man.

Disability.

Posted: September 21, 2018 in Postcards from Cancerland., Uncategorized
This is going to sound crazy but…
This journey that I find myself on has been like a sunrise in a story filled sky, raising up and casting light on things that I never knew or noticed.
It has illuminated the everyday struggles of others.
It has caused me to wake up to things that I was clueless about.
It has awakened empathy.
I have walked in OTHER shoes, I have seen OTHER struggles…
In the beginning, as we started looking at the weeks of treatment, fatigue and other fun side effects, recovery, low immunity, and weekly appointments, it became pretty clear that I wasn’t going to be able to do my job the way that it deserves to be done.
If I worked the way I needed to, I wouldn’t be able to heal.
If I healed the way I needed to, I wouldn’t be able to work.
I chose healing.
So, I’m on short term disability and I’m thankful to work at a place that provides that.
The disease and its cure have done a number on my body, there are things that I can’t physically do right now. So much of my past identity has been found in art and cartoons, right now I can’t draw.
I am unable.
So I find myself disabled.
I’ve worn many labels in my life.
This is the first time I’ve knowingly carried the disable label.
It is limiting.
It is a cage.
It makes me wrestle with thoughts that I’m not enough.
I struggle with guilt and insecurity.
Comparison sucker punches me in the psyche.
In a performance based society, I’m suddenly found lacking.
I’m not able.
Here is what I’ve learned from walking in these shoes…
During this season, I carry a label that reads disabled.
That does NOT make me less.
It doesn’t mean that I don’t have anything to offer.
It simply means there is SOMETHING that I can’t do.
The flip side is there are a lot of OTHER things that I can do.
So technically, I’m OTHERabled.
So I flip the label…I am OTHERabled.
I find the OTHER things that I can do right now and THAT is what I do.
I don’t compare myself to others or even to the previous me.
I concentrate more on who I am than what I do.
This journey has illuminated the everyday struggles of others.
It has caused me to wake up to things that I was clueless about.
It has awakened empathy.
I have walked in OTHER shoes, I have seen OTHER struggles.
I know and love people who have been labeled disabled.
For many, it’s not short term, it is something that they’ve carried for a lifetime.
It’s easy to let the labels make you feel left behind, less, and limited.
It’s hard not to compare yourself to others or to the previous you.
I know beautiful, productive people who have been been burdened with the disable label.
But, what if we flip the label?
What if we were to ignore the disable label?
What if we get our eyes off what we can’t do?
Let’s focus on the OTHER.
What are you able TO do?
What ability has God given you that makes your spirit soar?
Let’s open the cage.
Let’s celebrate the amazing, unique OTHER that we CAN do.
OTHER is beautiful.
OTHER is unlimited.
I now live OTHERabled.
I now live OTHERaware.
I pray that it’s not short term.

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There is a time honored rite of passage called the Snipe hunt.
When I was about 12 years old, I got welcomed into the club.
I was on a camp out with the youth group from St. Henry’s Catholic Church. (I think St. Henry might be the patron saint of men who smoke pipes.)
We had backpacked into the woods, ate a large amount of canned beanie weenies and sat around the campfire, farting and giggling.
It was a memorable trip into the deep woods of north east Oklahoma. I don’t mind saying that we survived some pretty harsh conditions, we hiked for minutes, our tents flooded one night AND we ran out of Vienna sausages.
Then late one night, as we sat around the warm, safe fire, we were told by the older dudes that the conditions were perfect for a snipe hunt. Evidently, The perfect conditions were a moonless night and a bunch of gullible 7th grade boys. We were instructed that we were going to catch, and probably kill, and possibly eat the exclusive wild snipe.
We were ready!
We were MEN and we were ready for the hunt. Snipes were described to us as cross between a wild mongoose, a Pygmy goat and an electric eel. Needless to say we were horrified but we were men so we hunt…right?
We were given  a musty burlap bag and 2 sticks and carefully worded instructions: The older guys would take us into the snipe hunting grounds and help us find the perfect spot. We were to stand there, expectantly, with our bag ready to snag a snipe. We also were told to bang the sticks together and make the snipe  mating call, which sounded like this: “kissy kissy woooo!” The snipes would then run into our burlap bags. It sounded pretty easy…a little scary, but simple…right?
So we did it.
The older guys separated us and led us away from the fire.
They took us out and left us alone in the dark with a burlap bag making kissy noises.
We waited and waited and waited.
It was dark and scary.
It’s really not fair, being 12 years old is already a really hard and confusing time. It’s even harder when you get left in the dark. There were weird completely unfamiliar outdoor noises.
Here’s the part of the plan that we didn’t know:
When we were really creeped out and about to lose our minds the older jerks…I mean guys snuck up on us and scared the crap right out of us. It was all a lot of fun…if you were an older guy.
I was crouched in the dark with my burlap bag making kissy noises. I wasn’t a big fan of the dark at home, but in the woods I was consumed with wide eyed, crazy fear. Right about then, my friend, Arthur’s brother, Phil, snuck up and GRABBED MY LEG!!!
My finely tuned survival skills kicked in and I did what came primal.
I had two sticks so I used them. I started beating the crud out of Phil with my sticks.
He was yelling “LUKE…LUKE…IT’s ME!!!”
I shouted back: “I KNOW!!”
I still feel kinda bad about that, Phil was a really good guy.
Here’s what I realize now, I should have stayed close to the fire.
I should never have let anyone lead me into the dark.
At the first mention of hunting mutant beasts called snipes, I should have just said “you know what, I’m good. I’m gonna stay here by the fire and make some s’mores”.
When you get left in the dark, there are weird completely unfamiliar outdoor noises…
scary noises that give you goosebumps…
noises that whisper doubt…
noises that tell you that you aren’t enough, that your situation is helpless, that there is no hope.
We wander into the woods, away from the fire, not realizing that fear lives in the shadowlands.
Fear grows strongest in the places further from the fire.
I have found that the safest place for me to be right now is holding hands with the fire.
I need to live as close as possible to the fire.
Which is easier than it sounds, because, in a crazy twist of flame, the fire burns INSIDE me!
That’s as close as you can get!
That should also make it tough for me to ignore the light.
But, sometimes I do.
I wander off into the darkness and I listen to the noises of fear and doubt.
I’ve got to find my way back to the fire.
It’s not hard.
He is always there.
He is close, ready to consume me in His holy heat.
The fire gently whispers to me, “you are bigger than you think you are, you have experienced the indwelling of the infinite. You are a habitat for the Holy.” He assures me that I’m never alone. He tells me the truth and tells me which way to go.
He sings campfire songs of healing and wholeness.
I sit in the fire and I’m warmed.
I just wish I had some s’mores.

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I find myself in an abandoned discotheque on the outskirts of downtown. The lights are dim, the music has faded. The aroma of fried food and perfume is thick in the air, in my weakened state this gives me a coughing fit. I find a warm can of Fresca on the bar counter, it helps my lungs to settle.
In my search for healing, this is where I’ve ended up.
I know I’m going to have to dance.
I walk out onto the rundown dance floor.
The mirrored ball is dusty and broken.
It doesn’t matter…
I know I’m going to have to dance.
I just have to find my song.
It’s a simple groove…three steps.
I move towards the miracle.
We are halfway through the scheduled treatment!!
Three treatments down, three more to go!!
We find ourselves dancing in the in-between, and we are learning the rhythm of this twisted little tango.
It’s like a three step groove on an old dance floor.
We are learning the steps, what once was foreign has become familiar.
Three steps…
Step One…
Treatment week is like a middle school ballroom dance. I have an assigned partner that I have to learn to move around with, a pump that is literally part of me. We dance to the soft syncopation of drugs being pushed into my body, this week is awkward.
Step Two…
The week after treatment is like a mosh pit. I slam dance with a long line of side effects. This part of the dance is painful and vulnerable and everything tastes like unleaded gasoline.
Step Three (FINALLY)…
This is the week that I currently find myself dancing in.
It’s a wonky waltz.
This is the recovery week.
This week…
My blood counts are good, the strangeness has settled down a bit, I’m getting a little rest at night.
I still can’t feel things with my fingers, that doesn’t keep me from pointing toward Heaven while I move.
This is the week when I’m built up before we start all over and I’m broke down again.
It’s a messed up rinse and repeat.
But, it’s all a part of moving towards the miracle.
I’ve learned the rhythm just in time for the back half of the dance.
In my head I rehearse the unforced rhythm of grace, it gives me a backbeat.
I’ve gotta listen to the right music and find the groove.
As I dance, things that were engineered for my captivity and demise are broken.
Three steps.
I know that I’m going to have to dance.
In the suddenly shiny and whole mirrored ball, I see the reflection of the miracle.

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As I write this, Hurricane Florence has made landfall in our home state of North Carolina. Our beautiful coast is being beat up and battered. We are four hours inland, we have been told to expect high winds, heavy rain, and power outages.
Our local over caffeinated meteorologists and friendly media people have told us to get prepared and hunker down.
Hunker down is actually really solid advice.
Hunker means to squat down and stay put.
It means to settle in and take shelter.
It’s good advice when storms hit.
Hunkering is really tough for some people.
They aren’t wired to hunker.
They would much rather hustle.
But sometimes you just got to hunker.
Since beginning my battle with the belly bully, pretty much all that I’ve done is hunker.
My job right now is to heal.
Sometimes, healing requires hunkering.
So, I hunker.
In fact, I have become an expert on the fine art of hunkering.
So, I want to share with you some helpful hunker help.
There are hundreds of books, blogs, and self help seminars to help you hustle, but surprisingly few can teach you how to hunker.
Fear not…
I am here for you.
Here are some things I have learned:
• Follow instructions! Listen to the authorities and experts, even when they seem to be overreacting. They might see things that you don’t.
• Learn some new card tricks! Sometimes we don’t like the hand of cards we are dealt in life, Don’t quit the game.
Learn some new card tricks.
• A good book can take you anywhere. If you are feeling cooped up, grab a book…not a text book, get some fun fiction and let it help you escape. In the last week, I have sailed the Caribbean and flown the Millennium Falcon.
• Snacks are important! Stock up on snacks. Everybody seems to stock up on bread and milk, evidently they plan on surviving on French toast. I would rather stock up on beef jerky and root beer. Get a variety of snacks that you like. Variety is important because sometimes things don’t taste the way you expected.
• Talk!
Spend time talking to God.
Spend time talking to your hunker buddies.
Remember to listen.
• Learn something. As long as we are living, we should be learning. The hunker times are powerful teachers, pay attention!
• Relax.
Take a breath.
Take a nap.
Squat down and stay put.
Settle in and take shelter.
Hunker!!