Mark Johnson

February 20, 2015 – Debra came with me today to my first therapy treatment, but she was not the only one here.

A few weeks back, Mark Johnson, Jocelyn Johnson’s husband, left this planet to return to our other, less familiar home. As one of my favorite childhood Jesus-movement musicians, Larry Norman said, “We’re only visiting this planet,” and Mark’s tourist visa was up.

During the final weeks of Mark and Jocelyn’s time together here on The Blue Wheel, a ladybug parked himself in their bathroom. It was cold months, and he stayed there for a long time. Jocelyn told me that she and Mark agreed together that once he went on to his next phase, he would send her messages through ladybugs. No moving chairs in the middle of the night. No blown hair without breeze. No mysterious empty cereal bowls in the sink. He would send ladybugs. There will be times when the ladybugs just show up of course. They are naturally occurring after all. But this is the agreement between these two soul mates.

I didn’t know Mark well during his full life. But I did know Mark when he had cancer. We would run into each other at “Cancer Camp” in Houston. He would have made a great Santa Clause later in life because of the way his eyes crinkled and flashed when he laughed – which was frequent. We talked several times in the halls and cafeterias at MDA, and we talked when he was in the room there just after Thanksgiving. Ultimately I spent a few more minutes with Mark talking about fishing. He had on a very cool Simms fishing belt, and after we covered the Snake River and its various trophies, he asked me how I was feeling now that my first chemo and radiation were behind me. We shared common ground. He had it worse than me. But we connected and talked and laughed. I am jealous of those who knew him better. 

At his send-off, his brother and several close friends talked about him with rich content borne from long miles of intimate relationship. From their words, clearly he loved deeply. He cared deeply. He made himself and others laugh. Others were better with him than without him. He was sharp. He loved a jeep under his tush, a breakfast taco in his hand, and wind in his hair. He loved to talk. And he loved to connect with people. He wanted to make sure those left on this globe took care of his family, and helped them to know what kind of person he was.

He was a special person. He is a person I would have loved to have known better. I think he could have saved me a few times, and my life would have been richer to have invested time around a grill and a dinner table with him and his lovely Jocelyn.

At his eulogy I will never, ever forget the video of him dancing in his bed just a few days prior. Watching him emphasized how much we as a species love music; how important it is for us. But as I sat there in the hard seat of the stone house of God watching Mark wave his hand, dip and swing his head, and sing with the soul of the music coursing through the room where he would leave this earth a few days hence, my heart felt him wanting to leave. It felt like he was already very close to “gone up yonder.” He was moving and rejoicing in his damaged body. He was carefree in those moments, completely unabashed in his musical rapture.

And at Mark’s request during his send-off service he shared the song “Goin’ Up Yonder”. It was a cappella with two African American singers, both towering in the balcony and of impressive height to begin with. The man set the tone with only his voice, a rhythmic basso in eight count. The woman joined and the song soared above us like a sunrise. If Mark had not already joined the heavens, at that point he entered the city and the place erupted.

I listened to all the available versions on the web in an effort to share this song. Nothing compared to Mark’s send off. Then I found this version which approaches it… The audience is an evangelical white church filled with somewhat distracting church goers. Their clothing and hair is 1980s. But try to ignore them. Focus instead on the singer, Lamie. She is entrancing, much like the woman who sang for Mark. 

The bottom line from Mark’s dancing, which was inspiring and inspired, and from Mark’s tribute song is that they were transcendent moments for me in a life-changing series of minutes.

On this planet, constrained in our bodies, we move them and make noise when music inspires us. In what way will we rejoice when we are no longer captive to the inconceivable but limited workings of our earthly bodies? Will we create giant white scars of comet light across the dark face of the universe? Will our souls turn to churning stars, erupting with cataclysmic joy and bending light millions of years into the past and future? We will be so powerful we capture and hold energy’s spectrum within us, creating darkness so absolute it is literally filled with light? What will we do? How will we rejoice?

Mark knows.

On Friday, February 20, when I arrived at my first session of therapy, I chose a non-descript tan seat two in from the end. For reasons that are unclear to me, I moved to the identical tan seat one over, closer to the nurses’ station.

I sat. Deb sat. Our nurse, Pat, came and sat. She was confident and reassuring. We talked through the drugs to be infused in my physical shell. We talked about my “power port”, a plastic bulb just under my skin that can take 300 pounds per square inch of liquid pressure and has a long catheter snaking its way into my superior vena cava just above my heart. Pat began administering the drugs to coat my brain’s nausea centers for 72 and 120 hours. And then it was only Deb and me sitting together, absorbing and coping.

I looked down at the linoleum beneath my boots, hanging loose beneath my jeans. In the sterile, intentionally isolated world of the second floor of the Texas Oncology Center, Mark Johnson had left me a ladybug. Thank you Mark. Debra and I deeply appreciate your message. This blog post will hopefully help your family know what kind of man you are, and what kind of ethereal messenger you are. Thank you for taking time out of your busy dancing schedule to drop me a line.

My boot. Mr. Johnson's koan is directly below the heel in the image, on the green tile. 

This guy didn't get here by accident. And I didn't find him by accident.

Going up Yonder video - https://www.youtube.com/watch?v=vKQGqoLWGI4

Going up Yonder lyrics

If you want to know

Where I'm going?

Where I'm going, soon

If anybody ask you

Where I'm going

Where I'm going soon

I'm goin' up yonder

I'm goin' up yonder

I'm goin' up yonder

To be with my Lord

I can take the pain

The heartaches they bring

The comfort in knowing

I'll soon be gone

As God gives me grace

I'll run this race

Until I see my Savior

Face to face

I'm goin' up yonder

I'm goin' up yonder

I'm goin' up yonder

To be with my Lord

I'm goin' up yonder

I'm goin' up yonder

I'm goin' up yonder

To be with my Lord

Therapy Day One

I was very worried last night; the night before starting chemotherapy today. As I laid my body down in bed, I began thinking over the just completed day: punch list for the new house – 135 line items; boxes unpacked and broken down in the garage – 75; garage sale – three weeks out; Beau getting out of backyard – five times tonight; … And then my brain froze in a mild panic mode: chemo starts tomorrow.

I fixated on it. I mulled the what ifs. A flurry of thoughts blew haphazard through my consciousness. I grasped each fearful one for only moments but each was rich in terrifying texture. The floors of the chemo place are linoleum. The hallway is long and featureless. It feels like a good place for a cuckoo nest. It was scary because I didn’t know much about it except for what the blogs have to say.

My brain was playing tricks with me because I was scared. I was up-regulated. I was having pretty major anxiety. So I stepped up and took a Xanax.

For those of you who might not know, Xanax is a mild anti-anxiety prescription medication. It’s a confession of sorts for me to admit that I took it. We take pills for pain. We take pills for acne. We take pills to thin our blood. We take pills to avoid babies. But as I was raised, you don’t take pills for your brain.

I have decided that I don’t agree with how I was raised on this point. I have evolved, creatively. My logic is that the body works according to its staggering complexities in all the various organs, but each is part of the greater body. The kidneys are no less different or similar to the muscles than they are to the brain. In other words, if we can figure out how to treat various symptoms in the kidneys, and we have, then we can also figure out how to treat various symptoms in the brain, and we have.

So I took a Xanax. This was after putting down my kids who were all very excited after Will’s basketball team beat their arch rivals to progress to the private-school championship tomorrow. It was a huge game for them, and upon winning you would have thought they just won the World Cup versus the Germans. We listened to sport rap music turned up to eleven on the way to get team burgers. It was a wonderful experience for me as a spectator. But the bottom line is that it was late when we finally got the boys wound down and into their respective beds.

Then after a few minutes Will and Cate came slyly out to the new kitchen island. We each ate a cookie and talked. I drank a glass of milk. They went to bed. I walked up stairs and around my room – The GillhamAttic. I took Beau out back to watch as he sauntered from tree to tree finding the perfect spot to mark his new backyard. I listened to the breeze. I appreciated the new light falling through our oak tree’s limbs onto the ground. I prayed. I circled the pool. I looked at the white stones I helped place on the north and south sides of the house. In essence, I stopped to meditate and breathe. Life slowed down … bed was a more welcoming thought. I laid my body down again, and this time, the thoughts were more clear.  

What is “chemo?” For the chemo patient it is a miscellaneous grouping of effects on their bodies that form into specter or champion depending on how you let it coalesce in your consciousness. My particular brand of common drug side-effects are nausea, feeling lousy, and hair loss. The less common side-effects include kidney failure, liver failure, loss of hearing, and permanent lost of sensation in fingers and toes. The common side-effects are not too concerning to me since they are unpleasant but short-lived, but the less common ones are very worrisome as yet another long-term life-changing difference in my body.

But notice the word “side” which is appended to those effects. They are not the main effect. They are not why these drugs are coursing through my veins now as I write.

The main effect is that my drugs kill cancer. They wear a white cape, ride a white horse and deliver an iron-clad boot kick to cancer’s ugly head. They are healing me. My body will feel some difficulties, but at the end of this, my cancer should be greatly diminished. I am counting on that, focusing there. I chose to look at my chemotherapy as more therapy than chemo.

The day was uneventful, as they said it would be. I took three liters of fluid through my port today. I dutifully reported on my bladder’s activities. The nurses dutifully informed us of the preventative measures they put in place for nausea. I was there from 8:30 to 4:45… a long day to have to sit still. It was a good beginning though. Debra and I did well. We had a wonderful, beautiful visitor who brought us lunch. We talked pretty much all day. And we wrote some too…

I am sitting at my new kitchen counter again tonight, finishing this post. The day was long; twelve more to go with one every other week for six months. I am praying they will not be hard. I am circling that in my mind. I am anticipating the main effect.

Update from Debra - Surgery, Chemo and New House

I thought it was time for a quick update on Wade's health.  This week marks three major milestones for Wade and me.  Wade is 5 weeks past his reconstructive abdominal surgery, he starts his first round of chemo here in Austin and we moved in to our new house on Monday.

The surgery he had at MD Anderson was pretty significant but he powered through the tough recovery and has slowly adjusted to his tummy's new way of digesting food and is now back to eating regular meals.  I've been amazed by how quickly he lost weight and how long it is taking him to put it back on.  It's a problem you never think you will have.  I think he's tired of all of the high calorie / protein shakes I make him but he consumes them diligently and I'm really grateful.

Wade is starting his first chemo treatment tomorrow morning.  His doctors want him to do 6 months of chemo with the goal of stabilizing / reducing the tumor in his bile duct and suspicious spots outside of his liver.  If this is successful then our friends at Methodist Hospital in Houston will consider putting him on the liver transplant list again.  A new liver for Wade = no more cancer.  This is our dream, focus and singular goal.  So, join me saying a little prayer that Wade's body chemistry responds favorably to the combination of chemo he will undergo.  The plan is that he will do the chemo infusions here in Austin starting tomorrow every two weeks for 6 months.  They will do a scan half way through to see how he is progressing.

Finally, WE MOVED IN TO OUR NEW HOUSE!!!!!  We are loving our new place.  We're still living out of boxes in a few rooms and we're missing a lot of furniture but we're getting there.  Please stop by and say hello. Our new address is 300 Westwood Terrace off Bee Cave Road in Westlake.

I'm an eternal optimist.  It is the only way I know how to wake up every day in order to be the best wife, mom, daughter, sister, sister-in-law and friend I can be.  I believe we can beat this and we are focused on it every single day.  We continue to be blown away by everyone's support and love.  Thank you from the bottom of my heart.  I have learned so much from all of you about how to genuinely care for people.

Be on the lookout for Wade's next post.  I'm sure the chemo infusion room will inspire some interesting thoughts from him.

Lots of Love, Debra

It was never meant to be me?

When I was little, Ben’s age or about 7, my family went on a trip to Beavers Bend National Park in Oklahoma. It is a pine forest surrounding a lake in South East Oklahoma with rustic log cabins, screened porches, fire pits and hiking trails. Sadly, I don’t recall any beavers.

I do recall that my brother Will and I had some 12-inch plastic action figures called “Johnny West” men we brought along. There was Johnny West, a fictional cowboy with snap button shirt and boots, and there were General Custer, Wyatt Earp, Geronimo and several other famous characters fashioned after the still-intriguing Wild Wild West of my childhood.

We set up those Johnny West men in our cabin’s fire circle in various states of action with their plastic guns and hats, and then we positioned ourselves about 20 feet away with new “wrist rocket” sling shots my dad had purchased for the trip. We shot rocks at them for hours. Since I was little and not able to aim the sling shots very well, my great contribution was mimicking fall after fall of the Johnny West men when they would take a direct hit.

After the battle, I inspected my newest Johnny West man, a Mohican named Fighting Eagle. He was shirtless, and when the dust settled his warlike chest had several deep gashes and cuts. I was pretty upset that my new guy was messed up, but my mom put red finger nail polish on his wounds and then he looked very, very cool. It’s a memory with conflicting emotions of both dismay and pride, and I recall them both very distantly, like looking up at the dive boat floating on the surface of a sixty foot plunge.

The other memory from that trip is that it’s the first time I remember that my stomach would very often get upset after we drove for a distance of any significance. When we arrived at the cabin, I can remember lying on a naugahyde couch on the screened porch listening to my dad and brothers playing that Johnny West game while my stomach hurt too badly to get up. As near as I can figure, now that I have 20/20 hindsight, after sitting for such long periods in a moving vehicle my abdomen would flare up because even as a little kid I had a fairly large choledochal cyst on my gall bladder. The position and movement must have aggravated it and caused me discomfort.

This all came to a head when we moved from Durant, Oklahoma to Springfield, Missouri. The drive was 12 hours in the front seat of a U-Haul moving truck that I had helped pack. It was late summer, and my stomach began to hurt after the drive, so after we arrived in our new home I had to lie down on one of the quickly-assembled twin beds in my new room. I can vividly recall lying on the bed looking at the blanched summer ceiling while push lawnmower noise ebbed and flowed as my dad would make passes by my windows, slowly mowing the lawn, the concentric rectangles of unmown and mown grass growing conversely smaller and larger. I was lying there awake when my stomach really began to ache, and I began to yell out for “Mom!”, as little kids do when they’re sick.

My brother Pres is the one who came into my room since Mom was outside. And it was Pres who found the softball-sized lump in my chest where the cyst on my gall bladder had finally grown to the point that it slid out from under the camouflaging side lobe of my liver.

I remember lying there thinking that if we didn’t have a doctor to fix me up, Dad would have to shoot me with a Johnny West style revolver to put me out of my misery. What a strange memory, but it’s there frozen in crystal as I laid next to the bedroom door on the bed, under the brightly colored Mexican blankets we had gotten from our friends in Brownsville in South Texas.

It was, of course, a Saturday so the only medical option was the exorbitantly priced emergency room. Somehow as kids we always ended up getting hurt on the weekend when the only option was the ER. More than once my parents bemoaned this fact…. Anyway, we went to St. John’s Hospital’s ER in Springfield, Missouri and thus began a long ordeal of multiple surgeries that would last the entire fall of my second grade year.

To sum up the procedures I underwent, the doctors removed the choledochal cyst and my gall bladder, and while they were in there poking around, they found that my kidneys and their system of tubes and reservoirs and ducts were also severely damaged. So, over the course of the next three months, they laid me open four separate times.

I think my parents figured out that I spent almost 16 weeks in the hospital during that time. Oddly I don’t remember it as too bad. My parents would buy me a new present for each week that I was in the hospital. I specifically remember some very cool 6-inch army men that had posable arms and legs, their upper and lower torso swiveled, and they had helmets I could remove. They brought a package that had four of those guys with machine gun installments and I had them set up in my hospital room for weeks.

There were also various lovely people who entered my life and my family’s life at that time. The one that stands out the most to me, really as the embodiment of all those people, was Patsy Ferguson. She was a brunette, very attractive, and dressed nicely every time I saw her. She was a classy seventies lady about Springfield. She picked me out as her cause and brought me twenty or thirty little metal cars that I still have today. And when the holidays rolled around and I was still in the hospital, she brought a four-foot white plastic Snoopy Christmas tree encircled with white lights and with little Snoopies hanging all over it with scriptures on the bottom of their red skis. That tree lived in my kids’ rooms on Christmas up until this past year when it finally gave in to life’s natural deterioration. We saved several of my favorite Snoopies for ornaments. Patsy was a huge ministry to me, and I and my family have benefitted from it for decades, and will continue to for more years to come.

I also remember that my immediate family gathered to me and that together we made some life-long memories. The one that stands out in my mind is me in an adult-sized wheel chair, my brother Will pushing me and doing wheelies, and with my family in tow, one night we all adventured through the empty holiday halls of St. John’s hospital to a huge, formal room with thirty-foot, floor-to-ceiling windows and dark walnut walls. The walls held larger than life portraits of the hospital founders. The furniture was post modern black leather with chrome legs and railings, and there was an enormous lighted Christmas tree there, reflected in the their shining outlines and the windows against the night outside.

I recall coming home that year for Christmas, and as luck would have it, someone gave me some mustard color pajamas. I was already sickly looking and skinny, but after adding in that horrible pair of PJs, I don’t think we got one snapshot where I didn’t look like the walking dead. Happy Holidays!!

So what’s my point in relating these tales? Deb and I saw the movie Wild last night. (For those of you groaning now, yes, it was a bad decision to see a movie about someone’s mom dying of cancer. But I have to say it was an even worse decision to make the movie in the first place. (I give it two stars out of ten. Sorry to any Reese Witherspoon fans out there.…) None the less, we saw the movie and at one point the mom, who is dying (and I am not), looks at her daughter who is unconvincingly played by Witherspoon, and says, “This was never meant to be me. We had so many good things that were just beginning.”

It was a moving point in the movie, but for me, far away in another place in my mind, it spurred my thoughts to wondering if my version of “this” was meant to be for my version of “me”:  was I really supposed to be the one with cancer? Why isn’t it some loser / loner like the freaking Unabomber? And if it is supposed to be me, then why? It’s a common thought for anyone who is face to face with mortality whether it’s theirs or someone else’s in the room. And believe me when I tell you that there is no satisfactory answer.

But in my case, let’s face it, when it comes to serious health issues, more than once I have been the unlucky recipient of fate’s stink eye. In every other sense she has smiled on my life more than anyone should hope for. I have all that I could or should want⎯and I feel blessed to have it. I believe I have been given the opportunity to appreciate the beauty of what I have more by shouldering the weight of this latest round of drudgery. I can bear the weight because I am used to it. I am well trained by my mistress fate. I know how to do it. And I can help my family as they learn. The only answer to my question above is to accept the twist of fate, put in your mouth guard and do some mental ass kicking.

How else to bear up under this burden? I know it’s not fair to just boil it down to “ass kicking.” For starters, you can no more kick fate’s ass than bottle lightning, as they say. And aside from that, someday in the future, someone may want to know what I did while I have been here. So, there are three major aspects to my strategy.

The first one I have mentioned and written about dozens of times. I have used it my entire lifetime, but this time in particular it has become very tangible. In essence, when adversity comes, I acknowledge it but I use it to enhance my life. My life and all it contains so beautifully and simply will pass whether I am on board and paying attention or not. So I push hardship, tiredness, and all the rest of that pile to the back of the bus while I remain as active a participant in my crazy life as I can. As a result of this strategy, it’s easier to get out of bed. It’s more fun to have Nerf wars in the hallways with the boys. It’s a deep pleasure to create art and listen to music with Cate. It is more fulfilling to have movie dates with my wife, even if we see Wild. In short, life is just better knowing that by engaging it, you are kicking hardship squarely in the tender bits.

The second part is very mundane. I do what the doctors tell me to do. Blah blah blah. It’s boring, but at the end of the day, they are trying to make me better and hopefully, no matter how they deliver the requirements, what they ask me to do is going to heal me. So I do it and get it done, whether that is taking pills that make me sick, shooting a needle full of stuff into my belly every morning, wrapping my tube gingerly with gauze or walking around the block multiple times a day.

The final part of my strategy is far more abstract but just as important to me. I have faith that I am supposed to be here. I have faith that somehow, by my being here, life will work goodness on me and my family and those who surround us. I have faith in God and his will.

By its very definition “faith in God” dictates that our Gods remain bigger than our minds can conceive. They remain beyond us, in every sense. We have moments where we glimpse their reality when we pay attention, but in general, they remain shrouded in poems and abstract verses, or hidden in plain site with verses that tell us exactly what they want for us⎯if we can only believe. But at the core of our beliefs, God’s intellect is broader, and his words are many-layered, leaving us to determine for ourselves to make a leap of faith. His power is too huge to put in a container. His breadth is beyond staggering. And His love is without limits or definition. He has done his part and we must do ours, however large it seems to us.

For me personally, this means I have chosen to believe in Jesus’s life, death, and divine purpose for coming to this planet. I have also chosen to believe in a God of intelligent design. Given these two leaps of faith, I feel as confident as I can in saying that God has not thrown me a “curve ball.” He doesn’t do that. That implies some level of indifferent capriciousness. Damn that notion. God is not that guy. I chose not to believe that. I chose to believe that he knows what my family can withstand and benefit from. I am here, with this disease, for many reasons. Some of them have become clear to me. Some of them will only be seen years from now with perfect hindsight. I am looking forward to those days….

I empathize with the mom from Wild who says, “This was never meant to be me.” But I disagree. My world is already better in some ways because of it. My family is growing closer because of it. My relationships are deeper because of it. Sure there are some hard spots, but I think it was always meant to be me.