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.
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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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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.

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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.