Long nights and special days.

Posted: March 23, 2019 in Postcards from Cancerland.
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There are only a few things I hate…

I hate cilantro.
I hate high top tables and tall urinals.
I hate conformity.
I hate liver.
But I really, really hate cancer.
It steals life.
It steals life out of special days.
Last night we had to come to the emergency room again.
I was having the same symptoms that I had a few weeks ago when I was internally bleeding.
I was dry heaving (fun Friday night activity). My back was hurting and I was weak. My hemoglobin has been dropping.
We called my oncologist and he was really concerned. He said to go to the ER.
So, we did. I was assigned my hospital issued mini gown and we sat in the ER for hours. Our dear friends, Mike and Rose, sat with us. I had a late night CAT scan. I accidentally flashed them a few times.
I got admitted and given a few blood tests. They found a little blood in my stools (look at me, I used the semi-scientific word for poop).
They are watching my levels the next twenty three hours to see if they get better, stay the same, or decrease. A decrease would tell us that there is bleeding happening.
My room looks like an old school dorm room. It is part of the old wing of the hospital. This room has stories. Now my story is soaked into the beige walls.
The lady in the room next to me passed away in the night. There were people running around in the hallway shouting words like “code blue”. It was loud and chaotic.
Then everything stilled.
Which brings me back to my point…
I really, really hate cancer.
It steals life.
It steals life out of special days.
Two of my friends got married today.
Two incredible young people that I love very much.
Alex and Katie.
This is their special day.
But, instead of sitting on the fourth row wearing uncomfortable shoes I’m laying in a hospital bed with a basketball game playing in the background.
I hate that.
Two of our friends came to visit us from Illinois. Larry and Raelene. Raelene is Diana’s first friend. They are amazing people with amazing stories. I wanted to hang out with them, maybe have a purée party. Instead we had to leave them on their home.
I really, really hate cancer.
It steals life.
It steals life out of special days.
But this is my hope…
“The Lord says, ‘I will give you back what you have lost.”
During my long night, I sporadically dreamt of many more special days…
Hanging on the beach with Diana.
Watching the Moonpie walk down the aisle.
Dinners with friends.
I’m coming for you.

Purée.

Posted: March 21, 2019 in Postcards from Cancerland.
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During my last hospital stay I got some fun, culinary news. 

The Doctor put me on a purée diet for at least a month. 

That means everything has to be soft, real soft.

Purée means to liquify solid food.

Everything I eat has to be creamy or pasty.

I can’t have crunchy, which is sad because I love crunchy. 

HELLO TACOS!!

There are some things that are naturally soft, things that I’m fond of like ice cream and gravy.

I’ve consumed a lot of pudding and yogurt.

I’m alright with all of that. 

I’ve needed some help with the rest.

My amazing, super resourceful sister sent me some preassembled purée.

She found cans of mushy BBQ Beef and boxes of fun food items. 

I get amazon boxes full of precooked kindness. 

Some of my phenomenal family has offered great suggestions for soft stuff. My nephew, Noah, is an awesome young foodie. He has put great thought into this.

Our incredible friend, Robyn, did a lot of research and put together some delicious recipes. She brought us meals, supplies, and colorful recipe cards. She is so gifted when it comes to food and nutrition. She has jumped in and is using her gifting and passion to bless us more than she knows. 

I save a ton of time at mealtime because I don’t have to chew. 

Here’s something I’ve been chewing onto today…

I have realized that in the last several months God has puréed my heart.

He has softened my heart.

 “I will give them one heart, and a new spirit I will put within them. I will remove the heart of stone from their flesh and give them a heart of flesh.” – Ezekiel 11:19 

I have been exposed to a whole new world…a circle of suffering. My heart has softened as I have seen others hurt, walk with compassion, and cling to hope.

I have gotten to know my friend, the Holy Spirit, like never before. He walks with me, I hear His voice, I feel His tender touch. I have truly fallen in love with Him like never before. He gives me courage and creativity. 

I’m different as the result of disease.

I cry a lot these days…

It’s not because of the pain.

It’s because my heart has been puréed.

nobody fights alone.

Posted: March 19, 2019 in belief, Postcards from Cancerland.
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This morning I watched the new trailer for Toy Story 4. 

I was one happy little space ranger because Toy Story is my second favorite movie series of all time!
At the end of the brilliant trailer the following words pop up:
“On the road of life there are old friends, new friends, and stories that change you.”
As I read those luminous words on my phone screen, it dawned on me that these sixteen words sum up much of our current road trip.
Our daily discovery is that nobody fights alone.
We fight, we are not alone.
There are countless people in our fight.
I think the enemy seriously underestimated the amount of brave, beautiful people who join us in our fight.
he thought he was just starting something with us.
he thought we would be easy to snuff out.
he failed to see the army standing behind us.
It’s made up of old friends and new friends.
he failed to hear the voice of my God say “this story will change you, it’s going to hurt, but if you will hold onto me, glory will come from this story.”
The story has brought crazy changes…
I have new scars, new appreciation, new diet, new outlook, new purpose.
We are changed.
As I write this I look down at my shirt, it is covered in little gray whiskers. My beard is falling out AGAIN. I’m not as bothered this time, I know it will be back. I’m okay with being a freaky looking hairless dude again.
My leg is pretty sore because I fell down in a parking lot yesterday.
I almost died last week, but I didn’t.
I put up a fight.
But…
Nobody fights alone.
The enemy seriously underestimated the amount of brave, beautiful people who join us in our fight.
We have surprising new roads to walk.
It’s okay…
We are not alone.
Nobody walks alone.
So here we walk through all the changes with the unchanging One…
“To infinity and beyond!!”

Love is…

Posted: March 18, 2019 in Postcards from Cancerland.
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This morning the Spirit whispered to me, He said…

Love is safe.

Love is strong[er].

Love is super-sized. 

I appreciated His words, but it took a while to understand them…

We went in to the Doctor this morning to get a plan for what’s next. 

For starters…and this is really embarrassing…I fell down in the clinic parking lot. In my defense, it’s a really tall curb. We were walking in (or trying to!!), I tried to step up and it didn’t really work out. Luckily, my knees took the brunt of the fall. I also almost swept Diana’s leg, I feel bad about that! I suddenly found myself just kind of laying on the sidewalk. AND I couldn’t get up! BUT, my incredible Viking nurse, who witnessed the entire event from the oncology suite, ran out within seconds and swept me up. 

It was super hero stuff. 

Since then, I’ve managed to stay upright. We got the report on the CAT scan that I took last week. There has been no change since January. So my Doctor has been working with the Doctor at Duke to find a new way to fight. 

I’m starting a new round of chemo on April 1st (no fooling!). 

It will have two new drugs. One is evil, it was described to us as the nasty step sister of the last drug we tried. We have been told that the first day will be rough…real rough.

Yeah!

THEN…

The revolutionary stuff starts…

Because of the response of the belly bully, instead of the stem cell transplant we are looking at a very new therapy that was just recently approved by the FDA. It’s called CAR T-cell therapy. 

I would be one of the first to undergo it. 

I would be a maverick, a pioneer! (Cue the cool cowboy music!)

Here’s what CAR T looks like: some of my cells are removed, engineered, and reproduced to be little street fighters. They are put back in my body, they march around Lukeland and they beat the hell out of the cancer cells. 

It would all happen at the hallowed halls of Duke. 

It’s not necessarily the report we wanted, but I was reminded of what the Spirit had, in advance, deposited in my heart…

Love is safe.

Love is strong[er].

Love is super-sized. 

No matter what happens…

Love is safe.

It picks us up. We all fall. We find ourselves knocked down, unable to get up by ourselves. Love sweeps us up and helps us stand. 

Love is a safe place that we can fall into. 

We are unable to stand without Christ holding us and giving us strength. 

Love is strong[er].

Love is stronger than whatever we face. 

Love is stronger than the enemy. 

Love is stronger than hate.

Love is stronger than death. 

I have tasted that. 

My Doctor told me this morning that in the last few weeks i “had a couple of real good chances to die”, that I came real close and was able to beat it. 

Love is stronger.

Love is super-sized.

Love grabs you by the hand and says let’s do something that we’ve never done before. 

Love swallows you up and catches you up in its largeness. We have been grateful recipients of a super-sized love poured out by our friends and family. Whatever comes next is engulfed by love. 

Love holds us as we saddle up and head into the great unknown. 

It takes a small army in comfortable shoes.

Posted: March 15, 2019 in Postcards from Cancerland.
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In the last few days we have moved from a suite in the ICU to a quiet little penthouse on the oncology floor. It was like going from Monster energy drink to milk!
Everywhere we went there were caring people in scrubs. I was poked and prodded. Numerous people felt my stomach and listened to my back. I was given shots, pills, and unbelievably nasty liquids. Nursing students got the huge privilege of watching me pee. I was weighed at two o’clock in the morning. I was scanned and studied.
All I know is that I feel much better than I did a week ago.
Thank you to the small army of good people who worked on me.
Thank you to the BIG God who holds me by the hand.
It’s ironic that I’ve spent my week in bed, but I haven’t got a lot of rest! Diana has got even less rest. She has tried to sleep on the hard hospital vinyl couch.
I’ve used a lot of bendy straws this week.
I love bendy straws.
Lately I’ve realized it’s good to live like a bendy straw.
Be flexible.
External forces constantly bend you.
If you are flexible those forces can’t stop the flow from coming through!
I learned about the wonderful world of puréed  cuisine. The “sausage” was the sketchiest, you can probably figure out why from the picture…
My good buddy, Marty, brought me new underwear. I was out and I’m a big
fan of the dry, clean undergarment. Real friends will bring you skivvies, no questions asked. Marty had even written a song for the occasion which he loudly sang as he entered the room.
We just heard those truly liberating beautiful words: “I’m sending you home with drugs.”
We are ready to break out of this joint!!
We are waiting for the wheelchair transfer person.
We are both so very tired, but I have no pain. My counts are good, my appetite is returning, and my good, unchanging God is in control.

Crazy Days.

Posted: March 12, 2019 in Postcards from Cancerland.
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It has been a crazy few days…

At one very vulnerable moment I’m pretty sure that my hospital bed was possessed. As I was sitting in my room, my bed started moving on its own….no SERIOUSLY! It went as high as it could and then the foot end went higher, the head went down. It was like the world’s slowest mechanical bull.

And I was trapped!
I finally managed to grab my  nurse call box.
The nurse came in and just started cracking up.
I had a procedure to see what was causing the internal bleeding. The anesthesia that they sprayed in my mouth tasted like a Walgreens receipt dipped in an ash tray. When I said that to the surgical crew nobody cracked up, laughed or even smiled. They just looked at me like I was weird.
Everything seemed to be getting better, but then I started throwing up blood again.
That can ruin a party pretty quick.
So at two o’clock Monday morning we were transported to the downtown hospital.
I was admitted into the ICU, which is evidently like fight club, there are rules. My nurse informed me that nobody wears underwear in ICU as he looked in disdain at my colorful boxer briefs. Since then countless people have viewed me without my colorful boxer briefs.
At one point, I had so many IVs that it looked like I had noodles growing out of my arms.
I had another procedure where they went through my leg to find the culprit and were able to stop the bleeding.
Since then I have been monitored and taken some incredibly nasty tasting meds.  My doctor just came in my room and said “well…it seems like it worked.”
So the plan is to move us to a regular room, maybe on a floor where they wear underwear.
They just brought me my breakfast, it’s green jello!

Mr Toad’s Wild Ride.

Posted: March 10, 2019 in Postcards from Cancerland.
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About midnight on Friday night, a car hit a transformer in our neighborhood.
That was the beginning of the wildness.
Suddenly our entire neighborhood was without power.
We were left in the dark.
We didn’t realize that we were in the darkness, we were sleeping.
Then…suddenly…Diana’s phone went wild. There were bells and whistles and it was super loud.
There was no incoming caller. The phone was just going wild.
We both sit up in the dark at the same time.
Diana grabbed for a flashlight, I felt weak and…a little wet.
She shined the flashlight in my face a gasped “WHAT IS ON YOUR FACE?!!”
Turns out…
I was spitting up blood.
That is where it gets wild…and…gross.
We tried to stumble, in the dark, to the bathroom.
We barely made it through the bathroom door and I passed out. I was sprawled in a twisted, yoga position.
I woke up to hear my scared wife talking to Lincoln County 911. EMS and the fire department came, in the dark, and loaded me up. They were awesome!
I got to take my first ambulance ride.
It wasn’t what I expected, I didn’t get to play with the siren.
My blood pressure was super low.
Most of my counts had taken a dive.
We got to the ER and I started getting wild amounts of fluids.
I’ve gotten four bags of blood so far. That seems to help, I’m not pasty white. I’m more of a pale taupe.
They ran a bunch of tests yesterday, we still have no answer.
I’ve been poked and prodded and, at one point, percolated.
I’ve been told “lay perfectly still on this table for eighty four minutes, do not move as we take these nuclear images!” Yep, you read that right! Nuclear images!!!
I can’t eat or drink ANYTHING!!! But, I’m saving a ton on delicious hospital food.
I received one IV that made it feel like the entire Panthers offensive line was standing on my arm.
I’m going to have a procedure today where they “go down” my upper GI track and see what they find. We will keep you posted.
As a kid I thought that a GI track was an accessory for my GI JOE  action Jeep.
I’m laying here in bed, in my green hospital issued mini dress, wondering why can’t things be simple for us?
Why things gotta be so wild?

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

SURPRISE!!!

Posted: March 9, 2019 in Postcards from Cancerland.
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In this land of unknowns, we stumble on surprise.

(It’s definitely a stumble, I’m walking like a toddler drinking cough syrup).
We had a Doctors appointment today, it was supposed to be routine.
The plan was to rebuild some white blood cells, get a stronger defense while we prepare to punch again.
But, we live in a land of unknown.
SURPRISE!
It’s been a tough week, I’ve felt like I’ve been beat up by confused cobra kai rejects.
There’s been back pain and I have the appetite of a guppy.
I’ve lost a lot of weight, which recently wouldn’t have been a problem…suddenly it’s not such a good thing.
I’m under strict doctor’s orders to eat lots of peanut butter this weekend. I can do that.
There were concerns because of my blood tests, my hemoglobin is low AGAIN!
So, I spent my lunch hour today in a big vinyl chair getting some fluids.
And…
I’m spending my day tomorrow getting a blood transfusion…WOOOO!!!!
SURPRISE!!
In this land of unknowns, we stumble on surprise.
Some sweep your legs.
But…
some are good surprises.
Really sweet surprises!
In this land of unknowns, some things are known and those are the things we hang onto.
The good surprises…
Love with BBQ sauce stains.
Friends who show up and show off what real friendship looks like.
The hardest days often turn out to be the most beautiful if you hang onto the known things…
God is ALWAYS good.
There is never a time that love doesn’t win.
There is a simple goodness in the world that is stronger than the selfishness.
Thank you to our amazing friends.
You are louder than the pain.
That isn’t a surprise.

SPEED.

Posted: March 6, 2019 in Postcards from Cancerland.
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I’ve never been fast, but right now I really miss the limited speed I had.
Growing up I have possessed ridiculously small legs, think of a chubby corgi wearing toughskins jeans.
Nobody has ever looked at me and assumed that   I was fast.
I have never exhibited any real athletic ability other than I can watch hours of football and NASCAR.
I have always been almost as fast as cold apple butter.
I miss that now.

Right now, I find myself a slow motion version of myself.

I’m really weak.
Turtles make fun of me.
Chemo drugs have made me loopy.

I’ve learned a big lesson – we should appreciate whatever speed we’ve been given in life.

I’ve spent a lifetime taking things for granted…
I could walk, run, skip like a gerbil, dance like an excited toddler.
If we aren’t the greatest, we run the danger of taking for granted.
What can you do?
Do it.
Run your race and don’t compare.

I can’t trust my brain this week.

It tells me crazy things.
Weird things.
I forget things.
This week my brain is sluggish and just downright wonky.
I can’t trust it.
Luckily I’ve surrounded myself with people I can trust.
I’m going to listen to them.
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