Breaking Out.

Posted: April 18, 2019 in Postcards from Cancerland.
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We are home!!

We were  released from the hospital this afternoon.
The Doctor decided we couldn’t do anything in the hospital that we couldn’t do at our house, and the food is better.
We didn’t argue.
It’s good to be home.
My oncologist and the team from Duke have put together a plan for my next step.
We start a new chemo treatment Monday with some aggressive drugs that will require constant hydration. The secret weapon is a drug used for extreme lymphoma and leukemia. I will bring home a lovely infusion pump so drugs will be pumping into me 24 hours a day. There is the possibility of some pretty dangerous side effects.
This HAS to work in order for us to go to Duke.
This is the last resort…that’s the report.
We have cried a lot today.
We have cried out a lot.
We are crying out for a miracle.
We are crying out for resurrection.
It’s time.
We want something to happen that no human can do.
That would be cool.

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chafed.

Posted: April 17, 2019 in Postcards from Cancerland.
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Once upon a time at Six Flags…

It was the early 80’s, I was on a youth group trip to Six Flags. It was July in Texas.
I was wearing baby blue corduroy Ocean Pacific shorts.
They were very stylish, I might have also had been wearing a fanny pack.
We rode the log flume ride, my shorts got wet.
After a few hours, I noticed something as I walked across Spain.
It was the post amusement park chafe walk.
I was hurting.
I was walking funny.
I would have traded my Star Wars action figures for a little baby powder.
Sometimes things change quickly and leave you chafed.
You go from going through life having fun and suddenly life chafes you and you are hurting.
Last July we got chafed.
Its become a daily thing.
Today we got chafed again.
It has been a long walk around the amusement park.

We were up most of the night getting blood and platelets.
I had a weird reaction to the platelets involving hives and a fever.
At 6:00 am I was getting a sponge bath from a lady I have never met.
Diana was in the room too!!
At 7:00 am I was lying on an ironing board getting a CAT scan.
The picture with this story is the view from our SECOND STORY ROOM. I feel like I’m at a summer camp in Oregon…
I wish I were at a summer camp in Oregon!!
I was attacked by a bendy straw. I was drinking a boost and it hurled it’s chocolate healthiness all over my hospital gown. This is my third gown of the day.
I have basically no immunity level at all. Everybody who comes into my room has to wear a mask. Not a fun Batman or Darth Vader mask, a crunchy, uncomfortable mask.
We were just walking through the day, and then…
We got some chafing news…
The CAT scan results.
They see no obvious reason for my bleeding.
They think it’s either chemo or the disease.
Speaking of the disease, it has gotten worse.
The tumor has grown and there are spots on my liver.
We are chafed.
But, I’m holding onto a hope that I don’t always understand.
I’m not leaving the amusement park just yet.
I’m just changing shorts.
We just got a text from our Oncologist that read, “Strap In, Amigo! Duke and I have a plan!”
Haven’t you heard…
Resurrection happens this time of year?

Weakend.

Posted: April 15, 2019 in Postcards from Cancerland.
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I spent my weekend in an infusion suite getting pumped full of blood…
It wasn’t enough.
My last round of chemo hurt every part of me.
I’ve gotten no rest.
We were leaving for the clinic on Saturday, backing out of garage when the garage door didn’t go up all the way and we hit.
It sounded crunchy.
Diana was trying to figure out how to fix it, so we could escape our garage.
I wasn’t much help.
I was in the back seat with a nosebleed.
It wasn’t pretty.
We called our amazing neighbor, Cory, who was literally at our house in six seconds and had the door fixed within minutes.
Good neighbors are priceless.
After a long weakend, We went in for my appointment this morning. I really wanted some good news.
They took blood.
We talked, I laid back on an ironing board and my doctor pressed around on my belly.
There are odd shaped things in my stomach, painful things that my Doctor pressed with a concerned look on his usually jovial face.
He is concerned that this is a tougher, more resistant tumor than we thought.
The Doctor wanted to take a CAT scan but, that will have to wait.
We learned that, even after multiple transfusions, my hemoglobin and platelets are still dangerously low.
So, as I write this, I’m lying in an emergency room bed.

Once again I’m wearing a starchy green hospital issued miniskirt.
Another doctor just determined that I have internal bleeding.
So we wait for answers and I try to look as sexy as possible in a green gown.

Plans Change…

Posted: April 12, 2019 in Postcards from Cancerland.
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So,  yesterday morning I had one big plan…
Recovery.
That was it, just that simple.
I had made it through an ugly round of chemo.
I was feeling like a fighter crumbled up in the corner holding onto my dreams and sucking my thumb.
I needed some sleep and maybe a good movie or book.
Then I got a phone call from my nurse…
My potassium was entirely too low…dangerously low.
I’ve learned that potassium is more than bananas. It’s a muscle builder. The heart is a muscle so it’s pretty important.
So the last two days have been spent back in the big crunchy vinyl infusion chair.
I spent about four hours each day hanging out with a bunch of lovely people.
BUT, wait THAT is not all…
After checking my blood today, we realized that my hemoglobin was incredibly low and my platelets are at 10. (Which is good on American Idol) but the normal target is 140, so not a good thing.
Evidently this can all be traced back to the gnarly new drug that I’ve danced with this week.
This is such a strange disease, the cure can knock you on your butt faster than a half crazed MMA fighter.
SOOOOOO….I get to visit my old friends at the hospital infusion suite the next two days and get several bags of blood and platelets that amazing people were kind enough to donate.
I’m ready for recovery.
Right now, I’m really weak. My brain is thick like Irish oatmeal.
But…
My spirit is strong and I still believe.

Talking to Myself.

Posted: April 9, 2019 in Postcards from Cancerland.
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I had another delightful round of chemo the last nine days.

Today I finished this cycle up by getting a big shot that will make my white blood cell count party the way they are supposed to.
Can I be honest…
It’s been a really hard week full of old school nastiness.
It has simultaneously felt like someone was hitting me in the head and stomach with an iron skillet.
I’m coughing like a sweet little seventy four year old IHOP waitress named Edna…”you want hashbrowns with dat, hun?”
I’m walking around like one of the old stop motion animatronic characters from the Island of Misfit Toys. I don’t go out without one of my super cool Pirate walking sticks.
I have distracting little sprouts of peach fuzz on my face. It’s a little unappetizing.
My skin is crunchy again.
The steroids make me weepy, I’m not proud of that.
But, after today I get a bit of a break!
And then, I go back again in two weeks to do it all over again.
In the midst of all this…
 I find myself talking to myself.

Actually I always have.
I was a kid with a wild imagination.
I spent a good deal of my developing adolescence running around (and dare I say even occasionally skipping around) our backyard talking to myself.
It wasn’t a problem for a while, we had absolutely no neighbors, there was nobody there to think it was weird.
Dad was at work and Mom thought it was cute and endearing.
Then we slowly got neighbors and they wondered about the strange kid saying stuff to himself.
I wasn’t quiet.
I learned to have conversation with myself.
I learned to tell myself the truth.

It’s a most valuable life skill right now.
I’m thankful that I developed it in my backyard all those years ago.
I tell myself out loud…
I’m completely healed by the stripes of Jesus.
I shall live and not die.
And I shall proclaim the wonderful wonders of the Lord.
Sometimes you have to tell yourself the truth even when it’s not what you see, hear or feel.
So I tell myself the truth.
Continually.
I don’t deny or ignore the pain or disease.
It loudly makes itself known.
I just try to make the truth louder.
It’s a valuable life skill.
Learn the truth and continually remind yourself.
I proclaim to anyone listening…
This is for the Glory and the Story of love.
I don’t care if they think if I’m weird.

AHOY and OWWIEE!

Posted: April 5, 2019 in Postcards from Cancerland.
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ARGHH!

This week has kicked me in the face, and gut, and pretty much every other body part. 

I was given some NASTY new chemo drugs this week. I was warned.

I was told that the seas were about to get rocky.

I’ve been really weak. 

The steroids have made my face look like a redfish.

My brain is as foggy as a murky old spyglass.

I’ve had a lot of fluids this week…I mean ALOT! 

We discovered yesterday that I’ve retained twelve pounds of fluids. 

I was sloshing when I walked and I was starting to look like the stay puft marshmallow man.

I’m now on a magic pill that causes me to go to the bathroom every eight minutes. 

My legs have been very wobbly. I mentioned that earlier this week, I’ve had some very near and dear Pirate partners, John-Sylvester Novak and Cheryl Cunningham Novak, send me a Pirate pal to help me navigate my wobbly course. It’s a very sweet walking stick. I’m not surprised, they are among many of the epic crew that have helped keep things steady during this journey. I’m so grateful. 

Now, sorry, but I’ve got to go pee AGAIN! 

I lean.

Posted: April 3, 2019 in Postcards from Cancerland.
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I lean.
Just got home from the oncology clinic and I realized the obvious…I lean.
When I make a valiant effort to walk right now, I wobble and look for the next wall.
I lean.
So I take desperate measures to stay upright.
It’s humbling, but so is falling down.
Diana even found a really cool, rustic looking wooden cane with deer antlers.(she tried to get a Pirate walking stick but couldn’t find one). My Dad would be so proud that I carry dear antlers around.
The cocktail of chemo drugs, fluids, and steroids have made me really weak and wobbly the last few days. Our beagle keeps trying to knock me down like a bowling pin in the hallway, she thinks it’s funny.
I’m foggy brained and I’m pretty sure I couldn’t pass a fourth grade standardized test right now.
I lean.
I’ve realized that if we are smart, we all lean.
We all find a crutch.
We all have  a tendency to wobble and fall.
We aren’t nearly as strong as we think we are.
We stumble through life. It has nothing to do with gnarly drugs.
We have a natural, built in decency to need…to lean.
Nobody gets through the hallway alone.
We were made to need our Maker.
He’s BIG enough for us all to fall into.
He holds us during our wobbly times.
I lean.
And right now, if you don’t mind I’m going to lean into a big, leather recliner.

blizzard!

Posted: April 2, 2019 in Postcards from Cancerland.
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It snowed today in North Carolina.

It was brutal
It lasted about twelve minutes.
I watched the whole blizzard from a warm infusion suite with Diana, three eighty year old, snoring women and the amazing staff.
I didn’t get to make a snow angel, which is probably for the best, I wouldn’t have been able to get up off the ground.
We finished the second day of the third phase of treatment. My back feels a lot better. I got good much better rest last night. Many people have asked why my back was hurting, the simplest answer is that it is disease related.
One of my belly bullies is currently tennis ball sized. He is a punk that pushes around the good natured, innocent organs a lot.
That causes some pain.
Chemo is trading life giving pain for the evil stuff.
Right now I’m wobbly, fuzzy brained, queasy, and REALLY tired!
Right now the temperature in Charlotte is 54 degrees.
Things change.

No Fooling.

Posted: April 1, 2019 in Postcards from Cancerland.
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It’s April’s Fools Day and I start a new round of chemotherapy…no fooling!

I’m sitting in the big vinyl blue chair, the weirdly soothing koosh koosh rhythm of the IV machine is going off. Today, I receive a virtual smorgasbord of fluids, anti-nausea juice boxes, steroids, and a wicked new chemo drug…no fooling!
The clinic staff is wearing T-shirts with my shiny face on them. That’s my nurse Chad in the picture. He and the rest of the staff have become friends and family. They are truly amazing humans! I can’t believe they are sporting the shirts! That’s very kind and pretty wild!!…no fooling!
I experienced a lot of pain this past weekend, mostly in my back and I threw up a few times. I’ve never been a big fan of throwing up!
It made me wonder what I have to look forward to this week.
I also didn’t get much sleep at all…no fooling.
I was in the chair for eight hours.
It was empty then full then empty.
We were first to get to the party…
Then last to leave.
That is how I have always liked to roll.
No fooling.

Bullseye!

Posted: March 28, 2019 in Postcards from Cancerland.
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We have a toy that has set unused in our house for about a year and a half.

That has broken my heart.

It’s a rocking horse Bullseye from Toy Story.
We got it for our granddaughter, the amazing Moonpie.
I was just sure it would instantly become her favorite toy, because I love Toy Story.
She wanted nothing to do with it.
Nothing.
She was frightened by Bullseye.
I didn’t understand it, he’s really not intimidating, he’s ridiculously cute and cuddly.
She would purposely walk around the room to avoid him.
It’s became a thing where every time she was at our house we asked her “are you going to ride Bullseye today?” and she would quickly and loudly chirp “no!”
Until today…
My awesome Mom and amazing Sister are in town.
We were all hanging out in Bullseye’s corral, otherwise known as the living room.
My sister, Hope, was acting like she was riding Bullseye.
Don’t think I haven’t tried this!
Sometimes it just takes the right person to make things click!
The Moonpie also drew support from another Disney character…
Her current favorite princess, Moana.
This was the day, decked out in one of her two Moana costumes that she bravely saddled up.
She blazed a brave trail.
It’s been a crazy week, my back has been hurting bad. My brain has been foggy and I just haven’t gotten enough rest.
I prepare to saddle up next week in a chair that’s not nearly as cute as Bullseye.
I start a gnarly new round of chemotherapy.
On Monday and Tuesday I will sit in the chair for eight hours both days.
Pray for me.
I know I can do this because I’ve watched other people do the same thing.
I’m also thinking about wearing my Buzz Lightyear costume.
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