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Most of us would like for life to be a nonstop party. But, often instead of a pinata, we get a promise. I am with you. The party is coming.
Posted: July 30, 2018 in Uncategorized0
The little boxer pulls his trunks up over his chunky girth. He is tired, but thankful that the first round is almost over.
He is ready to head to the corner for a little break and some time with his trainer.
He has always thought of himself as more of a lover than a fighter, but he has come to realize lately that is okay.
Love packs a powerful punch.
It is so much stronger than fear.
It’s Friday on my first round of treatment!
We have slugged it out with the belly bully.
Just call me Clubber Lang.
I didn’t know what to expect as I climbed in the ring. I’ve heard some rough stories in the last few weeks. In the words of Rocky Balboa’s trainer, Mickey: “You’re gonna eat lightnin’ and you’re gonna crap thunder!”
But, I’m still standing (with a whole lot of help).
Some of the highlight reel for round one:
The Doctor was real concerned about tumor lysis, which is a nasty little deal where uric acid causes the tumors to explode in a very ugly manner. We’ve been checking it and I have stayed embarrassingly hydrated. We checked it yesterday and my uric acid level was zero.
WOOO HOOO!
I’ve had a persistent, ugly cough for a while that has scared and irritated children and coworkers. It is gone.
WOOO HOOO!
The heavy steroids that I’ve been taking haven’t made me mean as predicted. But, they HAVE made me really emotional. I cry watching fabric softener commercials.
WOOO HOOO!
Some observations from the ring:
My wife is a champion, she has been so amazing in helping me stay on track, giving me sponge baths (which, surprisingly, isn’t as sexy as it sounds), and taking care of business. She is the very definition of unconditional right now.
“YO Diana! I love youse!”
We have met some wonderful people in the infusion chairs, both sitting and serving.
There’s every age and type of person. We all have one ugly thing in common and that makes us a tribe.
Together we fight on.
I’m an artist with a new sense of awe and appreciation for science!
I have had drugs and fluids pumping into my body for 96 hours straight (which sounds like a spring break gone real wrong). I’m pretty that sure some of the drugs that I’ve gotten this week have cost more than my first car.
Before that, I had 5 days straight of people cutting me open and poking me (which sounds like the aftermath of the bad spring break).
Right now, I have a white blood cell booster attached to the backside of my arm. It looks very Tron like. It’s so much easier to navigate than the European man purse port pump! It seems that the goal with the white blood cells is to “build them up before we break them down” (which sounds like the title of a country song that you would listen to on the bad spring break).
SUPER sized thanks to EVERYone who has been praying, speaking life and slinging hope our way.
IT IS WORKING!
“YO!! We love youse!”
The little fighter used to watch boxing with his Dad.
It was a serious male bonding thing.
Usually there was belching and root beer involved.
But there was always boxing.
The little fighter thought he had the sport figured out.
Surely, it was a solo sport.
It was all about the fighter…right?!
He was wrong.
The fight is a team sport.
Nobody wins the fight alone.
Bedtime has suddenly become a multi sensory experience.
It’s kinda weird.
I lay in bed at night and I can hear the soft cush…cush…cush of the pump resting on top of me. It’s the rhythm of remission and in my tired mind I dance a dance of hope. A few times I haven’t heard it because Maggie the wonder hound snores like a linebacker. I listen harder and I find the beat…is it still there?
It’s kinda weird.
I lay in bed at night and I can literally feel the guardians of the gut being deployed. I can feel the drugs moving into place, I feel it in my rumbling stomach, I feel it tingle in my skin.
It’s kinda weird.
I lay in bed at night and I see starbursts on the back of my eyelids. Not the delicious fruit flavored candy, I see a cosmic explosion of light…purple, silver, green.
It’s kinda weird.
I lay in bed at night and sometimes I taste salty metal. It reminds me of a certain all you can eat seafood buffet in Catoosa, Oklahoma.
It’s kinda weird.
I lay in bed at night and I smell things too, we won’t go into that though…
It’s really weird.
I lay in bed at night and I sense that many of the possible nasty side effects have been kept at bay by a powerful prayer army.
It seems that…
God hears…
God feels…
God sees…
God touches.
That’s not weird at all…
That’s wonderful.
“When you are a man, sometimes you wear stretchy pants.” – Nacho Libre
And…
when you are a man, sometimes you realize you have a stretchy heart.
That is what has happened to me lately.
I thought my heart was full…
I have a beautiful wife who is my best friend. Over the years we have learned that intimacy is so much more than a physical act in the dark. It is the ongoing act of caring and covering through the good and bad times.
I have an amazing daughter and son in law.
I have the sweetest little Moonpie granddaughter EVER!
I have a phenomenal family and incredible friends.
I even have a ornery Hound dog who has an embarrassing sleep apnea issue.
My heart was full.
But in the last few weeks, it has grown like a pair of stretchy pants.
Today is my birthday, instead of cake I have a magic juice box attached to my suddenly 53 year old body.
I HAVE gotten so many amazing birthday greetings today.
THANK YOU so much!!
You’ve stretched my heart!
My heart has stretched immeasurably in the last few weeks because of the reaction to our fight against the belly bully.
People from every intersection of my story have poured out so much love.
We’ve received a literal outpouring of prayers, kind words, offers to cook a meal or clean a room, and some really fun gifts.
It has stretched my heart.
A few weeks ago, some dear friends asked if they could start a gofundme for us. They recognized a need and they wanted to help. We have been truly blown away by the response! Words can truly not express the appreciation that we have for this load being lifted.
It has stretched my heart.
Each act of kindness has stretched my heart in ways that I could never imagine.
I have grown in appreciation of goodness and mercy.
It feels like my capacity for loving and being loved has grown.
I have come to see that there will be times when we either carry or we are carried, nobody gets through this journey alone.
This pirate has truly recognized the treasure of love and friendship.
I’m humbled.
I’m honored to call each of you my friends.
I’m the owner of a stretchy heart.
Many people have asked me how I feel…
Sick? Nauseous? Tired?
The honest answer is that I feel loved…
Very, very loved.
So, after a late night watching Shark Week, I started my Monday at the Doctors office with a lunchtime treat of some fluids, anti-nausea juice, and other assorted cancer fighting cocktails pumping into my unchiseled chest.
I have had enough fluids to fill Lake Erie in the last few days. The result of this is the fact that I suddenly have the bladder of a baby hamster, I have to go pee like every 47 seconds.
I’m realizing how important hydration is, maybe that’s why Jesus made such a big deal about living water.
Stay hydrated kids!
After some time in the big comfy chair, it was time to leave and just like my favorite Chinese restaurant, the Oncology clinic sent me home with a to go platter (without the egg roll). I have a lovely pump attached to me. It is pumping 3 different chemo drugs into my body. It is housed in a case that looks like a semi-stylish European man bag.
It has been a little awkward getting used to having a dude purse attached to my chest. It makes normal everyday things like the bathroom, bedtime, and ballroom dancing a little tricky. But, I’m getting used to it. I’m imagining that the pump is a top secret attaché that holds classified documents essential to the survival of the free world. So I’ve been trying to be stealthy despite the fact that I’m in a medication induced stupor.
I know I’ve probably watched entirely too many spy movies. But, I’m happy to report that the package is safe.
The waiting room at my Oncologist. The surf pictures are very soothing! I got another round of fluids and steroids. The big concern the next few days is tumor lysis, which happens when the tumors react to the treatment by dumping their contents into the blood system. This could result in acute liver damage. You ever notice there is nothing cute about the word acute? We are battling this with extra fluids and raging steroids this weekend.
Echocardiogram! The only thing we learned so far is that I do have a heart. I do have ultrasound goop on my chullet!
My view for a little while today.
My amazing reading material today. It fed and stretched my soul.
And finally, I got to see this sweet and sassy Moonpie (and her supercool mother).
Diana has been my constant companion on this unexpected road trip. She has been my cheerleader, coach, and chauffeur.
Technically she has been my driver for 27 years now.
If you’ve caught us riding dirty together you’ve probably noticed that she was driving.
Some people have assumed that I don’t drive, probably because of my height or predisposition to distraction.
But, Let me set the record straight…I DO drive!!
Diana just drives better.
I recognize that.
I celebrate that.
I enjoy the ride.
I learned to drive in a cow pasture, that’s a whole different set of traffic rules…”watch out for Bessie!”
I took out 25 feet of barbed wire fence right after I got my permit.
I flunked my drivers license test 2 times, I only passed it the 3rd time because the state appointed tester was sick of seeing my face and he liked my dad.
I have no depth perception so I am always too close or too far away.
My driving literally makes Diana physically ill.
So Diana is my beautiful forever chauffeur, especially in days like these when we are bopping around between doctor’s offices and hospitals.
I appreciate it so much.
Some people have actually asked me don’t I realize that the man is supposed to drive?
That’s stupid.
27 years ago, when I told Diana to get out of my dreams and into my car, I gladly scooted over.
On days like this, I’m so glad I did.
Today was my first trip to the infusion room.
I’m a total Sci-Fi nerd, so the words “infusion room” invoke a strangely romantic image in my mind. The infusion room sounds like it could be the place where you gather for a briefing or a report on the mission. It’s the place where you are becoming a part of the fight.
And maybe that’s exactly what it is.
Infusion is defined as the introduction of a new element or quality into something.
This is all brand new to me.
The nurse, who I will refer to as “The Infuser”, only because that sounds pretty badass, is about two and a half feet taller than me, and he has kind eyes.
The Infuser would be a pretty cool name for a science fiction movie,
I asked him if I should wear special clothes on treatment days to provide easy access to the port. I suggested that I could wear a variety of stretchy tube tops.
He said a t- shirt would be totally fine.
He put a needle into my chest.
The clear liquid starts.
Infusion.
I’m sitting here in a brand new room with my amazing wife by my side.
She is such an incredible source of strength and support. That doesn’t surprise me. She is a very good woman, I’m so very glad that I was infused into her life twenty seven years ago…
for better, for worse, for richer, for poorer, in sickness and in health…
Infusion
The freshly painted walls are a soothing shade of blue and there are beautiful paintings of waves hanging all around.
We got here early and we were the only ones in the room at first.
But the chairs are slowly filling up.
There is community here.
We share a common challenge.
We look at each other with kind eyes that know and recognize.
We are all at different places on the same hard road.
Infusion
The Infuser checks on me and adds new bags of clear liquid as needed. I get a little drowsy and hungry.
It’s like an awkward dance with my rolling IV machine every time I’ve had to go to the bathroom (and that’s been a lot!)
At one time a bunch of us were trying to go to the bathroom at the same time, it looked like a overmedicated middle school dance floor.
Other patients come and go.
The clear liquid flows.
Infusion
After about five and a half hours, I’m unplugged and released. Everything seemed to go good.
I’m pretty tired.
As we travel home, I can’t help but feel that my life has been infused with prayer while I travel this road.
The blood of Jesus has infused with mine.
There is power and life there.
“The wind blows hard against this mountain side, across the sea into my soul.
It reaches into where I cannot hide, setting my feet upon the road.
My heart is old, it holds my memories, my body burns a gemlike flame
Somewhere between the soul and soft machine, is where I find myself again.
Somewhere between the soul and soft machine, is where I find myself again.
Kyrie eleison, down the road that I must travel
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I’m going will you follow
Kyrie eleison, on a highway in the light.”
Kyrie eleison, through the darkness of the night
Kyrie eleison, where I’m going will you follow
Kyrie eleison, on a highway in the light.”
I have always loved this song by Mr. Mister!
I remember driving around town in my Toyota Tercel with the radio blaring. I didn’t realize what I was singing. I thought it was just a peppy love song about a girl named Kyrie.
But, that’s not the case.
The lyrics were written by John Lang. I don’t think we are related, but it would be very cool if we were!
Most people who sing along loudly with it don’t realize that the song is a prayer. For instance, my wife has always thought that the words were “carry a laser down the road that I must travel”. That’s very cool from a Sci-Fi point of view.
But, that’s not the case…
“Kyrie Eleison” is Greek for “Lord, have mercy.” It is used as a prayer in both Roman Catholic and Greek Orthodox services.
John Lang got inspiration for the song from singing it as a kid in a Episcopal church in Phoenix.
What a cool prayer…
Lord have mercy, down the road that I must travel.
Lord have mercy, through the darkness of the night.
Lord have mercy, through the darkness of the night.
We heard the song as we drove to my oncologist.
I sang along at the top of my lungs…
Because I know what it means.
I woke up with the Ramones song “I wanna be sedated” blasting in my brain, which can only mean one thing…
It’s port day!
I guess the official name is “port insertion day”, but that’s a little long for the greeting cards.
The plan was to put a cute little triangle that looks almost like a tiny computer mouse attached to a plastic tube into my chest. It will serve as a enter/exit ramp for everything that needs to come in or come out.
We checked in, the receptionist asked me the standard questions…
“What’s your birthday?”
“Previous surgeries?”
“Any allergies?” (Only Cilantro, but evidently that doesn’t qualify as a health risk!?)
“Religious preference?” (ummmm…I’m just crazy in love with Jesus.)
And then she dropped a little bomb…
“Do you have a living will?”
“HUH?!”
What? Why? Do you know something?!
I tried not to read anything into that.
the waiting room was full and there was one lady who was just being really rude to the receptionist, why do people have to do that??
I got taken to the first room. Diana got to go with me, that was cool!! I was told to get naked above the waist and put on a lovely green gown. I seriously almost strangled myself putting on the hospital gown. It’s a good thing that Diana and the nurse were there to help me.
As we got blood taken and vitals taken, we made some friends on the nursing staff, that’s always our goal.
It was a very cool all girl group that did the procedure. So I was a bit self conscious about everyone seeing my man boobs. Speaking of my ample chest, they had to shave it!! That made me feel pretty manly.
They tucked the chullet into a sterile beard hammock. I appreciate the care that was taken for my chin mullet. We talked about some of my tattoos.
I WAS sedated, but I don’t really remember it.
SO they dug in and made a one inch cut in my fleshy flesh, through which they inserted the port. They run a wire through another cut to a big vein and they guided the plastic tube there. Despite the sedation and local numbing stuff I could feel some of that happening.(that was an …umm…interesting sensation).
So now I’m locked and loaded.
It’s weirdly ironic for a pirate to have a port in his chest.
It’s been a few hours since I got inserted and I have some kaleidoscopic multi-colored bruises. I also have a little pain. It is starting to feel like a husky eleven year old boy punched me in the chest for about forty three minutes straight. I probably ought to take some ibuprofen.
I’m in awe of modern medicine. It absolutely blows my mind! I’m so thankful for the brilliant minds that dreamed, designed, and developed machines that can see inside my body and magical plastic tubes that can save my veins.
By the way…
The port is totally under my skin, you can’t see it, so don’t even ask!! Besides that would require the unveiling of my man boobs!
#SoliDeoGloria
#carbonatedjoy
carbonated joy 