HIGH FIVE!!

Posted: August 2, 2018 in Postcards from Cancerland., Uncategorized
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I must say that our granddaughter, the Moonpie, is, suddenly, pretty much an expert on HIGH FIVES.
She is really good at them.
Every time I see her, she will throw her pudgy little hand up and slap my hand with serious enthusiasm!
Her HIGH FIVES are medicine for my mind, body, and spirit.
They are like happy little joy bombs!
I love HIGH FIVES.
I think that one well crafted HIGH FIVE can change your day.
A HIGH FIVE says “I see you!”
It’s not a good feeling when you go in for a HIGH FIVE and somebody leaves you hanging.
That says “I don’t see you…”
not cool.
But, a properly given and received HIGH FIVE is a beautiful thing.
It’s magic.
Along with a greeting, HIGH FIVES are also celebratory contact.
It’s the most basic form of party.
It cost nothing.
It’s not a terribly complicated skill. I have limited motor skills, and I’ve been able to give HIGH FIVES for most of my life.
We have had some celebration this week.
There has been cause for HIGH FIVES.
We have gotten some good reports! The Doctor is pleased with what he has seen so far.
HIGH FIVE!
At one point, Diana and me HIGH FIVED each other in a Lab because part of a urine test that came back good.
We wanted to HIGH FIVE the nurse, but he was wearing rubber gloves and that made things awkward.
Ain’t no party like a pee party!
We have also had or witnessed some challenges this week.
There have  been times when instead of HIGH FIVES, we have stretched our hand towards ON HIGH.
That says “do you see me?” or “do you see my friend?”
We’ve had a few challenges this week.
Some new pain, and infection, and deficiency.
So, we lift our hand…
ON HIGH.
We also have friends, new and old, and family who have faced and fought some stuff.
So, we lift our hand…
 ON HIGH.
Maybe we need a combo platter of the two? Maybe, as we lift our hand ON HIGH, we can also be engaged in the art of the HIGH FIVE with our neighbor.
I think that says: “I see you, and I stand with you.”
Maybe…
we should start the celebration before we even know the reason to party.
I like that!
HIGH FIVES are free, and unlimited, and sometimes they are medicine.
Let’s give them out like crazy!
Let’s give them out, without any discretion, to friends, strangers, enemies, and most of all to children.
One of my favorite Kid President Quotes says: “Give people HIGH FIVES just for getting out of bed…being a person is hard sometimes.”
I see you!
I’m coming in…
don’t leave me hanging…
HIGH FIVE!!

OH! THE TASTES YOU’LL TASTE!

Posted: August 1, 2018 in Postcards from Cancerland., Uncategorized
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(with well seasoned apologies to Dr. Seuss!)

People told me that this would happen,

that my tastebuds would encounter a fright.
But I thought, I’m a chunky little dude,
I’ve always had a very healthy appetite.
I like food, I always have. It’s really no secret.
But, MAN! chemo-tongue is really, truly a thing,
that is  right now, keeping me from enjoying
my delicious cheeseburger with an onion ring.
OH!
THE TASTES YOU’LL TASTE!
Your food will taste like metal.
they told me, and sadly, that is true.
But it’s more than that! It’s biting into
an ugly unpleasantness I never knew.
Lunch meat tastes like a old Chevrolet bumper.
And fresh fruit tastes like the license plate,
Not that a rusty Chevy license plate is
actually something that I’ve ever ate.
Water tastes weird, coffee like sludge.
And grilled chicken? Don’t get me started!
It tastes like the pungent smell of when
a 47 pound geriatric goat has farted!
Eggs taste like nothing, it’s just not right.
And brother! It seems like such a crime,
when my dearly beloved tacos
taste like crunchy metallic slime.
You can salt and season
But, no matter what you do,
The flavor on your plastic spoon
will cause you to say EWWWWW!
I should eat something I’ve never tried.
Maybe, I should try tofu or kale.
Then if it’s different, I wouldn’t know,
It might just taste kind of stale.
I hunger for the day
When my senses are back in sync,
And I can devour scrambled eggs,
and a well done sausage link.
OH!
THE TASTES YOU’LL TASTE!

The Mysterious Place.

Posted: July 31, 2018 in Postcards from Cancerland., Uncategorized
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“It looks like I’m going to have to let go of what I expected and enter a mystery.” – Eugene Peterson
There seems to come a time, when you have things figured out.
You have your ducks in a row.
You have your 5 year plan.
You know what to expect out of life.
You know who you are.
Then something happens to the best laid plans, they get turned upside down.
The expected crashes to the ground and bursts like a bright red water balloon.
You find yourself in a most mysterious place.
We like easily solved mysteries.
We prefer stories that wrap up in 24 minutes when a group of meddling kids and their dog reveal that the zombie swamp monster is actually Old Man McGafferty in a mask. Then they ride off into the sunset in the Mystery Machine accompanied by a suspicious cloud of smoke.
Roll the credits.
Play the theme song.
Real mystery doesn’t work that way.
It seldom seems to be easy or controllable.
THAT is what makes it mystery.
It is foggy.
You have to step into it to start to see.
Things happen in the mystery that can’t happen anywhere else.
We are changed.
Mystery turns perspective right side up.
When we enter a mystery it might just redefine us.
We might have to leave behind WHO we have been.

We will encounter seasons when WHOSE we are is so much more important than WHO we are.

Mystery opens the door to wonder.
But, first, often there is wilderness.
Wilderness looks different for all of us.
I’ve been alive long enough to realize that wilderness is never a one time deal.
In the course of the journey we will encounter wilderness more than once.
But the goal of wilderness is always the same…
Let go of the expected and trust.
Wilderness isn’t a choice, but entering into the mystery is.
“Sometimes the smallest step in the right direction ends up being the biggest step of your life. Tip toe if you must, but take the step.”
Walk on through the fog, enter the mystery to see what wonders await…

Nightlight.

Posted: July 30, 2018 in Postcards from Cancerland., Uncategorized
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I have a confession to make…

I’m now sleeping with a nightlight.
It’s true.
I’m not ashamed.
Ever since this whole crazy journey started, we have a nightlight plugged in all the time.
I’m getting up a lot in the night.
I do the restless rhumba.
I go to the restroom 38 times.
I get up a lot.
So we have a nightlight.
It’s not that I’m not familiar with our bedroom.
I know my way around…
It’s just that SOMETIMES there are unexpected things in the dark.
You might step on a lego, you might trip over the box that you didn’t realize was there.
You might even step in a late night gift from the dog…EEEWWW!!
There are unexpected things there  in the night.
So, I sleep with a nightlight.
Because, I’m really not sure what’s out there.
And it seems that lately the really scary things come out at night…
the clammy-whammies…
the creeping-hurts…
the raging-brain-bombs.
Just like when I was eight years old, the monsters come out from under my bed.
Bullies love the dark.
It makes them seem bigger and scarier.
THAT is why we ALL need a nightlight.
Here’s the cool thing…
Even in the darkest night, the light shines through.
Light is always stronger than dark.
Light literally swallows up the darkness.
It illuminates the bullies and shows them for who they really are…
Temporary shadows in the night.
Sometimes life is a walk in the dark
Light helps me get a grip.
I sleep with a nightlight.

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 Uncategorized
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Let’s Spin!

Posted: July 28, 2018 in Postcards from Cancerland.
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Some of my favorite music of all time is an amazingly innovative album from 1988 by the Swirling Eddies called “Let’s Spin!”. It’s incredible, fun, under appreciated art.
Interestingly enough, let’s spin is also a really good description of my feeble attempts at sleep last night.
It seems that the combo platter of the steroids and a new chemo drug did some weird and wacky things to my brain.
I didn’t sleep much at all, but the few minutes when I did, it felt like my mind was the paint spinner machine at Wal-Mart. You know what I’m talking about, when you buy custom paint and they put it in the shaking contraction for a few minutes to blend all the colors together.
That’s what was happening to my brain.
Let’s spin!
There were…
words…thoughts…colors…images…ideas…
spinning around inside my brain.
Faster and fasTER and FASTER.
spinning…
SPINning…
SPINNING!
They spun into blurs, then blended into one bloppy monochromatic hue…
then they would suddenly come to a jerky stop.
When everything stopped spinning, I knew it was time to get up and go to the bathroom.
That was my night.
Weird, huh?
You want weird?
At one point I swear I saw the Wicked Witch of the West riding her bicycle frantically chasing a screaming Krispy Kreme Doughnut!
Then, they both got sucked into the big bloppy monochromatic hue.
It was weird.
It was unsettling.
It was a spin storm.
After a long night, the sun came in and things settled.
I’m glad.
I’m just tired.
Here’s something I’m learning: You make room for rest, because sometimes it doesn’t show up when it’s supposed to.
That’s true for EVERYbody.
Things spin.
Sometimes our lives spin out of control.
Sometimes life is a spin storm.
Grab an anchor.
Cling to hope, joy, truth.
Find some rest.
Healing requires rest.
Get some.
Let’s rest.
That’s what I’m going to do.

The First Round.

Posted: July 27, 2018 in Uncategorized
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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.

There’s a rumbly in my tumbly and stars in my eyes.

Posted: July 26, 2018 in Uncategorized
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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.

Owner of a Stretchy Heart.

Posted: July 25, 2018 in Uncategorized
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“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. 

Can I get that to go?

Posted: July 24, 2018 in Uncategorized
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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. 

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