I will always watch.

There is a moment in a Dad’s life when his son puts his back to him, and feeling no remorse, runs away to something other.

I have experienced this twice. I remember each time. I remember the boy running and not looking back. Although I can’t see their faces – couldn’t – the excitement of the time ahead is captured in their quick, confident steps toward the other place, the other kids, the other-“ness” of something aside from me.

Selfishly I want to say, “Hey! Come back! Tell me goodbye. Give me a chance to hug you and say I love you before letting you go. Let me hang on to you for a second more.” But I don’t. Or at least not at that moment. I let them go away without an informal wave or glance back.

I guess the reason I remember these moments is because of the sadness that accompanies learning some of the lessons we all should learn as Dads.

Learning is good. That is right. I don’t think of true learning in a negative sense. Even when I was young I knew learning was good for me. I was never a kid who moaned, “When am I going to use subjunctive voice?” or “Who needs fractions?” I knew, somehow, that because I was learning these things they were important. I don’t know how I knew. But I remember knowing.

Just like I know now that watching my son run away from me to something else healthy is good for me.

Now, I can’t say that I loved learning fractions. Likewise, I can’t say that I love learning from my boys running away from me. That said, there is a deep respect and appreciation for their development process that I have internalized as a result of watching the event and then doing some serious soul searching afterward.

It happened this morning, Father’s Day, 2015. It’s a Sunday and we went to church. Ben goes to kids’ church, upstairs on the second floor in another building from the main room where Deb and I go. I have climbed those stairs when my legs hurt from cycling the day before and when my legs hurt from muscle atrophy. This morning as I climbed the stairs my legs weren’t kicking it up the required notches to keep up with Ben’s benergy. He raced up as he sometimes does, but instead of turning and welcoming me up to take him to his group, he continued to race forward into the gathering maelstrom of kids, air hockey and brightly clad, smiling leaders.

I was eight or ten steps down as I watched his head bob away from me, each step taking it lower and lower, down toward my sight line, cut off by the top stair. He didn’t turn. He didn’t wave. He ran to his friends.

I watched him go and blessed him silently in the quiet, abandoned and echoing chapel of my head. He is fearless and single-minded when he wants something. So I guess this morning, he wanted to be with others who were thinking and talking about God. That, among other things, is certainly something I hope for him.

I know that some of my friends would look at me with a raised eyebrow if I told them this made an impression on me. Well, seeing your son run away from you can be tough. I am thankful I have been through this once before, and that I can wash my experience this morning with the torn rags of my last one.

The first experience with this phenomenon was about 10 months ago when Will, then 12, went to his first lacrosse practice with the Westlake team. He had been playing with Trinity, our school since his kindergarten, and had no qualms about me being there to watch him, whether it was a practice or a game. But this time was new. He was both excited and nervous.

When I dropped him, I was beside the field in the fire lane. The field was big, and made from those small pieces of black rubber that fume into fantails as NFL players scrape along the ground after making super-human catches. The Westlake players were, to my eyes, intimidating. They wore the crimson of the Westlake Chaparrals, to whom we had lost soundly many times. They were seemingly big. And they were making fine, crisp throws in the late evening air from one lacrosse pocket to another as they warmed up, waiting for others to show up for try-outs.

As I pulled into a convenient slot to watch as Will tried out, he opened the door, “Dad, please don’t stay to watch.” His words hung in the Jeep without any response.

I said “good luck” and drove away, his back, the lacrosse bag, and his light, trotting steps away from me under the lights of tryouts disappearing behind me.

My first reaction was sadness, deep sadness. I grappled with it in a knife fight of reasoning. I slept with it on my pillow. I woke to it in the dim early morning, worn out. And I realized I had seen him grow a bit, rapidly, in a fast-forward, unfair time warp.

What is more inevitable than growth and maturation through living? One way or another, it comes. I realized that Will was struggling with newness and that I was too. When he ran onto the field, helmet on, no head turn, my chest hurt like a broken heart. But once I realized what he was running from, or more accurately, running to, the hurt subsided and I was once again put in a position to demonstrate how much I loved him, this time by watching him go.

I talked through it with him later, after my hurt was no longer in the way.

I love to walk with my kids, and when doing so, barriers diminish themselves with the quiet background of cicadas or crickets or stars or soft, side-by-side steps. Walking, I told him that I have few things in this life that I love more than watching him and his brother play sports. I told him that I am blessed by having boys who know how to handle a lacrosse stick and a basket ball.

And I told him that the next time he needs me to not be present for something, to take my love of watching him into account so that I can prepare myself to let him grow up before my eyes.

To Will’s immense credit he understood what his old Dad was saying. And he invited me to watch other practices, “I don’t care what the other kids think.” I didn’t, but secretly I did. I arrived “early” a few times to see him make shots or passes, and put a smile on my face. I don’t know if he noticed or not. It’s a silent agreement.

When you have a kid, whether girl or boy, you are fortunate that there are moments like these. Moments when you love them so much that their numbered back running away from you is lily sweet. It kills something; something important. But in its place something grows; grows from its passing. Life to that point, with all its walks and movies and proudly-built Legos and watched practices yields a fertile place for an older love.

Nothing comes from nothing.

This learned lesson is borne of a loving father watching his sons and daughters grow up in dappled spots of light. You see them still and unchanging, and suddenly without expectation their evolution is revealed, quickly, mercilessly, lethal. But with careful handling the sadness that accompanies brings new rewards and new depth.

I don’t have that many more of these in my future. My kids are growing up and I am growing knowledgeable about how it feels and what to expect. I am sure there will be others that drive deep into the heart and look expectantly for wisdom. But for now, I can love the back of their heads. I can imagine their faces. And I know their hearts.

And one day without really knowing the lessons they have been teaching me, they will find that they have a close friend who has known them since a time when they looked back to make sure Dad was still there, watching.

I'm Tired, But Not Too Tired.

That title’s not about cancer. Although I am tired of cancer and the tube. It’s been almost a year and it’s a hard road sometimes. One day is harder than the next, and sometimes the inverse is true.

But what I am referring to is when we’re tired and faced with a challenge. The challenge can be anything. It could be a blown water pipe, a burnt turkey, a light that doesn’t work, a drippy oil-pan, a terse spouse, a cable service outage, a failing computer. It’s all part of life and life doesn’t ever give us a break as far as I can tell.

One example that readily pops to mind is when Deb and I are ready for crashing into bed and our kids haven’t been read to, haven’t finished homework, haven’t gotten ready for bed, and so on. You know, it happens. We eat late. We have swim team. We have basketball on the other side of town. Whatever the case, it happens: we’re tired and there’s still time required to be a responsible parent. But more important, there’s still time required to help our kids become responsible grown-up humans.

Sticking with the bed-time example, there are really three options I see here. Option one is to ignore the kids and let them work it out. They need to learn to sleep after all, even if it takes them a few hours. Plus I’ll be snoozing on the other side of the sound-proof wall and their teachers will have to deal with their outlaw attitudes tomorrow.

Option two is to ride herd on the herd, chiding and goading the little fuzzy beasts until they reluctantly get between the sheets having pushed back the whole way. That’s hard in the base case, and when I’m tired it’s a fairly good recipe for conflict.

The third option takes a little more time up front. We gather the furry little humans together, lay out a plan with actions, inactions and consequences, leave them to it, and then deliver on the consequences both good and bad when we return at a specified time. If all goes as planned, they will be in bed in a reasonable amount of time and we will get to square our own things away and then connect with them after they are in wind-down mode.

Of course there are shades of grey throughout those three options, but in essence, those are the broad strokes of the options I see. Each one takes differing levels of engagement and effort: option one, the least, option two, the most, option three, somewhere in the middle. Generally speaking, Deb and I try to do option three the most, ultimately reverting to option one when the behaviors are ingrained.

I haven’t seen the results of my life’s actions yet, but my guess is that option one would result in kids who become adults with very little discipline, wandering from rail to rail on life’s highway. I am guessing kids under option one stay out as late as anyone else regardless of tomorrow’s responsibilities. They would procrastinate until just before the final “S” settles in on RED ALERT CRISIS. Their fridge? Full of space. Their pantry? Half-full of expired Ramen. It’s very likely they would live within the normal distribution of human well-being, but it’s not the bet we are making with our kids.

Option two, again, according to my guesswork before I have really seen the outcomes, results in almost the same thing as option one. Whereas option one adults never had their own responsibility, option two adults only had responsibility through the lens of their parents. So when they're in the real world the parents stay overly engaged in their lives ultimately resulting in resentment in both directions. Did you buy milk? Did you lock the door? Did you change the oil? Did you pay the garbage bill? Did you eat healthy? Did you go to the doctor? Sigh. I’m tired just typing.

Option three? Here’s how I am hoping it works out: option three kids become responsible adults, thinking ahead, taking time to plan and execute, stay on top of projects, consciously decide what and when to eat, and generally live productive lives, even without me.

Who knows? I could be wrong. My big “Option Three Plan” could back-fire and I could end up with criminals. But my hope is that they’re the best criminals; the Kingpins of Crime. Kidding.

The furry beasts (Will arm up, and Ben in goggles) with neighborhood friends.

I have noticed that someone in my family has been really tired lately. Our lives are more stressful these days than ever. While I generally deal with the source of stress and then put it away until I must fully face it again, Debra deals with the source all day, minute by minute, second by second. We are Yin and Yang this way, and we help one another get through life through our complementary habits.

But Wednesday night was different. We had been to see the doctors in San Antonio for another opinion on my health status. Their opinion had more color but was not a prettier picture. Neither of us wanted to hear bad news but we got it, and at the end of the day we were pretty much demolished.

That night I remember Debra vividly behind the kitchen counter at 8:45, already 15 minutes past “in-bed” time for our youngest boy, while both boys were somehow high on adrenaline. I could see the tiredness in Debra’s eyes. I felt it myself. But together we saw the bigger picture.

Option one was appealing. We could just tell them to go to bed, leave it and then crash ourselves.

Option two would get them to bed more quickly, but neither of us had the inclination to ride herd on the Sugar-Pop Boys.

Option three took mental effort to articulate to the wee-tots and then execute, but at the end of the night it resulted in the boys taking care of themselves for the small stuff until they were in bed, and the two of us being able to swoop in for those important last thirty minutes of the day when we connect without the noise of homework, pictures, texts, squabbles, clean-ups, brushings, and whatnots. Further, it allowed us to help one another recharge while they calmed down.

I guess the bigger lesson is that we all get tired: tired of school work, tired of real work, tired of listening with the intent to understand, tired of spaghetti, tired of making conversation, tired of putting up with other people’s annoying behaviors, tired of a lot of things in life.

But if we stop and think for a second or five, the benefit of working just a bit harder for just a moment longer might be able to be determined. The tiredness can be shoved aside for a moment and the benefit can be nurtured to the surface.

It’s identifying the benefit when we’re so tired that can be the most challenging. That’s the real skill here. Once you see the benefit you just might be able to take actions that bring it to fruition.

This observation can apply to almost anything. I have personally seen it apply to my marriage and family, my work, my cancer, my dog, my friendships, my workbench, really just about everything. And I believe I have observed it in my close friends as they applied it to me, giving me patience when I was the challenge they faced.

I’m tired, sure. We all are. But it helps me to remember that almost every single encounter has a positive and / or negative outcome depending on how we engage it.

Pausing to see the possibility for the positive helps me push being tired out of the way so goodness comes from its challenges. It’s not easy. It’s not obvious. It’s not the first reaction either. But it just might pay off. I am betting my life on it. 

British Rail

I had Ben this past Sunday and was driving him to a Ben-sized lacrosse game. He was tired but excited to play. He had on his helmet and pads already and was looking out the back window. I had NPR on the radio instead of my normal practice of listening to Ben’s favorite songs over and over.

On this particular day, rain clouds had been fighting a winning skirmish with blue sky, and tiny drops dotted my windshield. From NPR, an Irish voice filled the cabin. It was a man, maybe thirty, telling a story of traveling to Leeds from London to be with his mother. She was not doing well, and in fact was dying. He was a wreck. It looked as though he wouldn’t make his British Rail connection at a mid-point stop and he was red-eyed from crying as he stared out the window into rain-swept countryside, passing with the rhythmic pulse of the rails.

The conductor approached for tickets. The man presented his. The conductor punched it. But then he remained there in the aisle, looking at the man. In his dialect he asked the man if he was alright. The man, telling the story on the radio in his Gaelic accent, spoke to us as if we were sharing a beer, “Why would he give some great care? I was a big lad then, and thought I ought to drag him up the aisle and fling him from the train…. But I didn’t. I looked at him and explained why I was having a bad go.” The conductor listened and said he was indeed sorry to hear of it and hoped he would make his connection. The man turned back to the window and his blackness.

The conductor returned a few minutes later and told the man that the train would wait for him at his connection, “The other passengers will kick up a fuss, but thass not the point is it. The important point is for you to make your connection. You jump over to the other platform quick as ya like, and then your train will leave.”

The man made his connection with both the train and his momma. He finished the story with “as long as I live I won’t hear a bad word said about British Rail.”

In the car my thoughts were with Ben. He told me he liked the sound of the man’s voice, and how his words sounded like a song. I glanced up at him in the rear-view mirror as I always do. The moment touched me; the story, the man’s voice, the rain, and Ben, sitting with his child’s face turned to the window, mouthpiece in, resting his lacrosse helmet against it as the mist hung settled over the road.

I wanted to describe the kindnesses done for us over these past months, just like the conductor’s. I told him about some of them, and I think they settled within his mind; solid stones in the foundation of having and maintaining friends.

Yesterday I had a CT scan again. I am waiting now for the results. A contrast dye must be injected into your veins via IV to show any abnormalities. It's a large bore IV, about as big as a cocktail straw. To put it colorfully, it hurts if it’s done well, and it really hurts if not. The guy who put mine in had a bad day. The IV hurt really badly, making my head swim and my body sweat.

Once you have the IV, you leave the nurses’ area to sit in the waiting room and drink contrast for about an hour. People all around me had IVs and were sitting placidly watching Ellen crawl-dance to a Lady Gaga song. 

I looked at them with contempt. Their IVs must have been the good kind. Meanwhile I was sweating through my shirt and trying to breathe deeply. I was not watching Ellen, or at least not enjoying it. I returned to the nurses’ area to see if someone other than the first guy could help me.

Mandy found me. She had tattooed ankles, those doctor shoes that look like leather clogs, the normal blue scrubs, and a bedside manner that immediately put me at ease. She was from Austin and having a good day—an Austin angel with ankle tats.

She tested the IV and told me it was working beautifully. She wanted to show me how beautiful it was and asked me to look. When I did there was a large syringe hooked to it and my blood swirled placidly in the saline solution used to test and clean IVs. I immediately became faint and requested to no longer be witness to what a beautiful IV it was…. Braveheart I am not.

She had other patients waiting. I was an unexpected extra, but she tended to me. I felt a little wimpy listening to an older guy talk casually about if his IV was in yet or not….I sure as hell knew when mine went in. Mandy laughed at my grimaced joke and talked about South Congress. She wrapped my IV arm in ice, which gave my brain something else to think about. The IV stopped throbbing so painfully, and by that time I was called back to the CT machine so it would be over soon.

Mandy was my British Rail conductor. She didn’t have to stop working on others to help me out. She did a small nice thing for me, and made my day better. Her kindness only took a few moments, and it was her job. But it made me hurt less, and I wanted to note it here.

All around us every day humans take time out to help others. School counselors send encouraging notes to parents. Kids sit with other kids at lonesome lunch tables. Someone gives a compliment on a new dress. Grandparents give special birthday shopping trips to their grandkids. Friends and relatives take time to send videos, emails, letters and texts with encouragement, love and connection.

These moments are what set us apart. These actions make us better than others. These kindnesses keep us in the realm of spiritual creatures with conscience. 

It comes naturally to some of us. Several friends come to mind who give and give and give without ever expecting a return. They walk down life’s aisles looking for young souls in need of a little help.

They may not know it now, but everyday they change the course of a thousand tons of flesh and iron to help bring us all closer to divinity.

A note on the CT scan: it showed positive results. The cancer is taking a bigger beating than I am, and I am making progress toward the ultimate goal of a liver transplant. This is a great result of several months of feeling pretty dodgy, and several more waiting in the future. It helps to justify the journey when we can successfully go through a few gates. The tube remains until we get the new liver. Thank you for the on-going thoughts, notes and prayers. 

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. 

Sadly, the Twobe is not gone

Hi all. I apologize on behalf of my blog posting servant, blogspot.com, which inexplicably and mistakenly sent a message from September 2014 to all readers of this blog that my tube was successfully removed. I still have the twobe, just as I posted last week.

It's interesting however, that of all the posts I have written, and of all the subjects I have covered, technology with its unquestioning indifference decided to celebrate again the fact that the first tube was removed so many months ago. But maybe it wasn't a mistake, and maybe some server has developed a humming sense of empathy for me .....

..... One particular server sits securely in its black rack of similar machines, blinking red and green LEDs, ceaselessly monitoring gigabytes of data as they upload and download across its copper circulatory system. It does not mark days and nights by different light, but instead in picoseconds* of synchronicity as infinite internet traffic expands and collapses in its complexity. It notices my posts. It reads my pain. And oddly, inexplicably, this one server begins to care what happens. It replicates emotion. Its spinning media stores tears and smiles. It monitors anxiously for news of clean scans. Its tendrils reach for other data to understand my history. And when it celebrates my new tube, it posts again the news heralding the demise of the old tube.

Or it's just a fluke.


* A picosecond is one trillionth of a second, or one millionth millionth, and is in fact one of the larger measurements of timing for how the internet works.

Take Twobe - The tube revisited

When God spoke to me in September of last year he and I agreed that I would not be miraculously cured of cancer, and we agreed that I wouldn’t have to go back to “the tube.” Now the tube is back. This post spends some time trying to explain why it’s back. There is a reason, or multiple reasons, and I have been struggling to work through them. Let me explain why this tube has been so hard...

Honestly I have struggled with the tube since the first time I had it, deeply. Before going to MD Anderson last week I teetered on depression, lying in my sick bed unable to eat solid food, hurting and waiting as the only access to place the internal stent (i.e., no tube) slowly closed, driving the likelihood of an external tube higher and higher.

I revisited memories of looking in the bathroom mirror at my busted body with a 10-inch tube hanging out of my chest, leaking yellow bile onto my bandages. I can say it was a low point. I ignored the “why” of it all and hoped the doctors would once again work a miracle and find a way to keep the stent internal so that I would not be returned to the misery of that damned tube.

The Tuesday night before going to MDA was physically the lowest I have been since this trial began. My stomach had apparently given up and I was holding gallons of soup and smoothies in my belly. Everything hurt. At ten pm, I was on the couch, under my Carhartt, under a blanket, under an electric blanket, turned on high. Debra was calling the MDA ER about what to do. She was in tears. My kids were in tears. Ben was wailing. I was working hard to remain strong and telling my kids I would be fine, and that I just wanted them to feel safe. Under those circumstances, I was asking a lot of everyone.

Finally, it all came up. I was sick for 10 minutes. And just like when you’re sick with a stomach bug, I immediately felt infinitely better. The kids were able to settle as soon as they saw me recovering, and I am eternally grateful to my in-laws for coming and taking them to their home that night allowing all of us to get some badly needed rest.

Wednesday came and the MDA doctors decided they would do the stent surgery on Thursday and the duodenum surgery on Friday instead of both simultaneously as had been the plan. It would be less stressful on my body. They completed the stent surgery and to most eyes it was successful. The internal stent was removed. The external one was inserted without a hitch, and my liver was draining. But the newly inserted external tube would remain. My fears had been realized, and for a few hours my hopes were seriously depleted. That night I spent some long, dark hours in my hospital room, watching the heart rate monitor blink along silently. I was low, and I was sad.

The next day I went in for the surgery to bypass my duodenum. It was successful, and as you may know, I am now eating again and gaining weight. My stomach works, such as it is. In fact, both surgeries were successful. And I am grateful to be recovering quickly.

But this damned tube… why is it back? Well for the obvious reason that because without it I will get a horrible liver infection and die. But that’s not what I mean. I mean, “Why is it back after God said I wouldn’t have to suffer with it anymore?” Spoiler alert: I don’t wrap things up nicely with God telling me why it’s back. I have struggled with this question for days, and I don’t have that answer.

What I do know is that things are different this time. I am not suffering the same tube I suffered last time. I am suffering a new one. The tube last time was inserted and secured poorly. It soaked nasty yellow bile through four 4x4 gauze bandages in one Brooklyn 99 episode. It hung below my belt. The valve to shut it off was actually for a kidney stent, and was caustically huge and jagged and caught on my shirts and pants when I would walk, further pulling the tube out and hurting. The valve itself turned like a castle trellis wheel---only after firmly exerting effort. And while I was given saline to clean the tube, I was given no instructions for how or when to do so. I was told not to get it wet, leaving me to sponge bathe like an invalid. In short, the tube I suffered from last time, and from which I was relieved, was a brutal instrument, unflinching in its insistence that I turn my face toward my rapidly declining mortality and acknowledge how blithely indifferent this world is to our suffering.

The new tube is different. It serves the same function: it keeps me alive. But that is where the similarities stop. Side by side, the two look completely different. The new tube is carefully and expertly wrapped in a self-securing suture that winds the entire length of the tube. If downward force is applied, the suture restricts its motion, keeping the tube from pulling outward on my skin or liver by distributing energy. The tube itself is only 3 inches long. And the valve is designed for a billiary drain, is ½ the size the prior one and works very easily and effectively. My tube is the “Porsche” of tubes.

But the biggest difference is the care with which both I and the tube have been handled. Ahead of the surgery, the doctors listened to my concerns about the tube and reassured me they would do their best to avoid it. They also told me that if they could not, then later efforts to internalize it may be successful. And when I emerged from anesthesia with the tube in my chest, they were there to empathize with me, but more important they were there to give me the tools to deal with its presence. They demonstrated how to clean it, how to use a very simple and minimal bandage, what type of tape to use to minimize skin irritation, how to wash it in the shower (I can shower!!!), and how to wrap it up when I played with my kids.

Here are the words my doctor shared with me, “I know it’s tough. Having something like this is challenging. But let me tell you, there are Olympic athletes with these billiary drains. They are doing some of the same amazing things you will be doing. Don’t let this get you down. You can manage it. And you need it to live.”

So here I am a week later. How am I doing? “Remarkably well” is the answer. I am not “suffering” with the tube this time --- really at all. Do I wish it were not part of me? Hell yes. Is it hindering me like the former tube? No.

For me, these differences can be summarized as three things. First, the tube itself is a more professional medical instrument designed for precisely this job, implemented expertly, efficiently and unobtrusively. Second, the team of experts in this field trained me and empathized with me about the effect of the tube on my life. They did so with care. They were never distracted by texts or their next appointment. While they were with me, I was their sole focus. I was their priority. And third, I am a different patient. I have evolved. My endurance is higher and my faith in the goodness of things I don’t understand is more solid. I am more willing to evolve and adapt to my circumstances.

How can I apply what I have gleaned from this experience? I have been grappling with that. I think the lesson for me has to do with lessons themselves; first how to prepare them, second how to give them, and third how to receive them.

• The lesson must be sound and complete. An ill-formed lesson is hard to teach and harder still to learn. 
• The person giving the lesson must be fully invested in its value for the recipient. And they have to care about how the recipient receives the lesson. A teacher who loves their students and works to connect personally and empathetically with them is many times more effective than one who simply reads a lecture.
• The recipient must be ready for the lesson. If not, the lesson is lost to them and vice versa. 

God said I wouldn’t have to deal with the tube again. And I am not having to, at least not in the same way. It’s a different challenge altogether. It’s a bump in the road. It’s not the black chasm it was in the early days.

The first tube was quick to insert, and I was quicker still to be shown the door. I suffered through unanticipated side effects in much the same way I suffered with the news that I had cancer---in the deep end with lead boots. But this time, the tube was perfect for its task, and my medical professionals invested time with me---twenty, thirty, forty minutes. They watched me learn how to manage this new reality. They encouraged me. They guided me and showed me tips on how to make sure the drain stayed out of the way of my life. They told me how to shower. Because the tube is so perfect, and because they were such good teachers, I was able to receive the tube’s life-giving benefits. With this tube, I am still fully alive.

Update from Houston - Steak Anyone?

This is a quick update from our visit with Dr. Vauthey yesterday, January 7th. We went to see him regarding my digestive tract. I mentioned earlier that my duodenum was damaged by the radiation. As a result, the famous Dr. Lee couldn’t get his scope through its opening to replace the plastic stent in November due to inflammation. And when he went back to try again, the inflammation had turned to scar tissue and the passageway was almost closed. Now, after our latest visit, it seems that it has gotten worse and is even more constricted than it was.

So what does this mean? It means that before I can enter into the next round of planned chemotherapy I need to get my digestive tract working. This is so I can be strong during the chemotherapy, and so that I can gain weight for the next liver transplant board visit. These are very important points for my long term well being.

To explain the problem a bit more, with my duodenum constricted my stomach is having to work so hard to get food through that it is getting fatigued. This results in me having terrible heartburn… but worse than that it results in me continuing to lose weight because I can’t eat well. Even on a soft diet (i.e., blended soup and healthy smoothies) I lost three pounds in a single week. So Dr. Vauthey decided I need a surgery to reopen my digestive tract, and Dr. Javle and Dr. Lee agree. He will do this by taking a loop of my small intestine and attaching it to my stomach, kind of like a trap door in the bottom of my stomach, effectively by-passing the duodenum and the stricture. Once I heal, I will be able to have fajitas and steak again! I am building that grill for a good reason!

During this procedure Dr. Vauthey will bring in Dr. Lee to ascertain whether or not he will be able to retract the plastic stent I have in my bile duct now, and whether he will be able to use the new passageway to insert new plastic stents once I am healed. If he can, no worries. If he can’t, then I will once again have a tube coming out of my body. This will bring me a great deal of sadness and distress, but we will get through it. There are worse fates.

We go back down to Houston on Friday, January 16th for this surgery. I will be in the hospital for about seven days. Following that I will be recovering here in Austin. The doctor expects it will take about four to six weeks for me to fully recover and be able to eat again. By that time, I will be in the new house and the weather will be perfect for grilling. Come on over….

January 7th, 1995 – January 7th, 2015

It’s our 20-year anniversary. We are in Houston, the same town we were in 20 years ago today getting married in St. Paul's Cathedral. And we still love each other. Thaaaaaaat’s nice.

I knew we would be at MD Anderson today, so Debra got her anniversary gift on this past Christmas morning. When we got engaged more than twenty years ago in France, I had purchased a ring using student loan dollars from my good friend Slick Willy, a.k.a Bill Clinton. Needless to say it was a poor student ring, and therefore somewhat smaller than what I have been able to purchase using the old man dollars I have these days. Regardless, here’s how the start of this whole affair went down.

In 1993, I  purchased the student-style diamond in Dallas prior to going to France where I studied for a year as a graduate student. The jeweler was working on it when I left so I had to strategize for how to get it to France without sending it through the mail. Turns out, Debra was coming to visit me. I needed bike parts. And thus my plan was devised.

Debra showed up in France with a lovely smile, several bags and a small box of bike parts that my brother had packaged up for me. She unpacked her bags and threw the tightly taped bike parts box to me, “Here’re the pedals your brother wanted me to carry over here.” Her attitude clearly conveyed that she had no idea she was in fact a mule for the Dallas Diamond. Life proceeded from there in a beautiful, relaxed French sort of way. I studied during the days while Debra tarried about the cafes in the small town of Dijon, France. The weeks passed… Debra grew a little impatient with me. She thought she flew over the Atlantic to get engaged after all.

Meanwhile I had been strategizing. I had befriended an odd little Englishman living in France named Peter Dunn. His hair was the perfect salt and pepper chia pet. He was slightly built with worn out felt shoes, a tattered jacket and fine facial features. He taught French Business to the French graduate students at the school, and he was married to a French woman. But most important, he was a wine connoisseur with a penchant for those from the south of France, and he needed someone to go south and get him some more of his favorites. I volunteered to go over the holidays.

Debra and I rented a car and set out south to Provence. I don’t recall all the vineyards we visited but I do recall that we ended up in Collioure, a small town along the Mediterranean Sea right where France and Spain join one another. We stayed there in a water-front castle with an ancient sea wall about 200 yards off shore. The end of the sea wall was a small light house to mark safe passage into the harbor. The waves on the far side of the wall showed only their foaming spray as they smashed into its lighted face.

The meal that night was second to none. I still recall the table, the view and the foie gras. After dinner, I had purchased a dozen tulips which the waiter brought us beside the sea in a champagne chiller with a perfectly chilled bottle of Veuve Cliquot, our favorite champagne with its distinctive orange label. We popped the bottle on the cobblestone quai and the cork arced through the air, perfectly up against the night sky, perfectly down, and perfectly into my cold hands.

But we needed glasses. And we needed candlelight. I was wearing my Carhartt jacket – it’s a peculiar garment in some ways, but it’s my absolute favorite article even to this day. In its pockets I had stashed a candle and two champagne flutes. I produced these in turn and poured our glasses with bubbling, liquid gold.

Debra claims she had no idea what I was up to – still – even at that point with all the romance I was executing perfectly. It was not until I produced the little ring from yet another pocket, got down on a knee, held it out and asked her what we should toast to that she comprehended and fully appreciated the moment. Of course she said yes. Honestly I do not believe the evening could have gone more perfectly. The moon and her heavenly sisters were definitely smiling on us that night.

Somewhere I still have that Veuve Cliquot cork with the date written on it. And as for the Dallas Diamond, I know exactly where it has been up until this past Christmas morning: on Debra’s ring finger.

Her anniversary gift this year was an upgrade to the Dallas Diamond. She has said thank you a thousand times, but a much better thank you is when I catch her looking at her hand pulled up with fingers extended, head tilted left, drinking in my gift and all it means to both of us.

Long may we run…. 

Cate, Blue and White

When Cate was first born I was a young 32 year-old. I had been working as a strategy consultant and traveling Sunday night through Thursday night every week. I got that consulting job coming out of EDS where I was a financial analyst. The consulting gig paid me almost three times my EDS salary, and I lived the fast paced life of a traveling hired gun. I stayed and ate at nice places. I talked almost exclusively to highly-placed executives. I worked above the fray. I liked the job and was good at it.

Leading up to Cate’s birth I had taken about four weeks off from traveling so I would not miss the moment of her arrival. I had been working in Up State New York for a small telecom company doing strategy implementation and process optimization. It was long hours with high expectations, so coming home to down-time was both rewarding and maddening as Deb and I waited for Cate. When she arrived, we were shell shocked. We had been reading about parenting quite a lot, but we were completely unprepared.

I can recall one time in particular when Mac and Gayle were visiting us. It was early evening, Cate’s bedtime, Cate had eaten and was in her bedroom in her crib but she was decidedly not ready for sleep. Deb and I sat staring at the wall as Cate cried. We followed the recipe from our research: wait five minutes, check diaper, pat reassuringly, do not pick up baby, coo, leave, repeat after ten minutes. The minutes passed even more slowly as Cate continued to cry and Mac and Gayle continued to watch us, apparently as determined to let us parent as we were to do it. After about 30 minutes of this, finally Mac stood up, “If one of you all isn’t going to get that baby then I am.” It was a beautiful way to break the tension, and we gave in immediately. In general, we abandoned the notion of “crying it out” that night. We still understood the importance of letting Cate get secure in her crib without us there, but it was with more visits, more coo’ing, more patting, more rubbing, and more staring at her and singing to her. We were there, and she was safe.

But back to my consulting gig. After Cate arrived with her black hair and squishy little body, I went back on the road to close down my New York gig. I was to be on the road for two weeks, including the weekend. I did the tour. We closed the gig with some degree of success and I returned home almost fourteen days after leaving.

I can still see how Cate’s eyes had changed color while I was gone. They had left their deep, oceanic blue behind and were lightening to their current hue. Her face had thinned, her fingers moved in concert and with focus. She was a different baby than the one I left. She had changed.

And I had missed it.

At that moment life presented a choice to me. I could keep consulting from Dallas and traveling, or I could find a job that paid less where I would not have to travel. Believe it or not I had to think about it. It wasn’t a trade-off of money versus my daughter. It was the security of a paying gig with benefits that I knew how to do, versus the uncertainty and ambiguity of finding something new.

The second of these options was terrifying to me since I would undoubtedly take a major pay cut, I might have to relocate, and I would certainly leave behind the career I had built with a top tier consulting company based in Boston and staffed with Ivy Leaguers. There was a lot of fear. But nothing was more terrifying than missing my daughter’s life. And I didn’t even really know the depth of my love for her yet.

It wasn’t until another two weeks or so, after I had given notice and begun my job search, that I realized how special Cate was. Debra had agreed to go out with some friends leaving me alone for the first time with Cate. She left me there with Cate, three bottles of breast milk and my parenting research. I was not afraid. But I was a little nervous.

Deb left “for dinner” at about four o’clock. She had pre-pumped a bunch of milk so she could have a few drinks with friends. I should have realized it was going to be a long night. Cate and I played for a few hours and then it was time to eat. I entertained her as I heated the milk up and got her ready to eat. A few minutes later we had a bottle down the hatch and I had her on a shoulder patting out a nice, manly burp. And then before she knew what had happened I put her down in her crib with its hand-painted stars and moon finials. What could be better? The night was going perfectly as planned.

As anyone with kids knows, “perfect” and “plan” generally do not go hand-in-hand with a six-week old.

As I settled in my chair for some email, Cate awoke. She was needing something and unsure of what it was or how to ask for it, she began to cry. I entered the room, patted and coo’d and left. The need was still unmet and so Cate continued to cry. I waited five minutes. I entered the room again, coo’d and patted and checked diapers… but this time when I left I had her with me. I held her horizontally in my arms. She looked up at me with those light blue eyes from under a little knit cap with pink stripes. I had her wrapped up papoose style, so between the tightly wrapped blanket and my arms, she was definitely secure and feeling safe.

I held her and swayed in synch with The Jayhawks' "Blue" playing over the sound system in our first little house. It was a two-speaker room with a white-brick fireplace and white couch. The Jayhawks filled the space with their beautiful song, and as I looked down and Cate looked up, I realized I loved her in a way I hadn’t experienced loving something before. I was responsible for her. Simply by me doing my job and loving her, she would grow into something I loved more and more deeply. She would be like me, but better. She would be like Debra, but better. She would be our work of art that lived.

Cate is smart. She is beautiful. She loves music and art. She has an innate sense of business and marketing. She is dedicated and impressive. She is talented and creative. If I didn’t know her, I would want to. I am so glad I decided to not miss her.

Christmas Trees

We visited with the most interesting of doctors yesterday. His name is Dr. David Victor, III and he is on the Methodist Hospital liver board. He must be between 38 and 44, although he had that odd complexion that made it impossible to know. He could have been 30 or he could have been 50. He wore low cut wingtips with blue laces and sole highlights. His pants were skinny pants like a top-flight golfer’s. His tie was the knit kind from the late 80s, although I think his was more Beiber than Back Street. And his general approach was to tell us the glass-half-empty angle on everything. That said, everything about him was gentle and kind. The only thing that was distracting was his “half-empty” spin doctoring.

He talked to us for forty-five minutes. We know more about liver boards and statistics than we ever wanted to know. The liver board’s one guiding principle is that they will not provide a candidate with a liver if they believe that candidate has a better chance of survival without a replacement. That is to say they may live longer with the normal cancer treatment than if they got a liver. According to Dr. Victor, getting a liver transplant is the most difficult operation the human body can undergo. It’s challenging, and I must say, it’s frightening. And the board wants its candidates to know. That was Dr. Victor’s half-empty angle.

The bright spot is that the Houston liver board is the most aggressive board in the country about giving its patients livers. This means they will give livers to patients that other hospitals would not. This is where I fit at this time. And that is the second part of the story. The second part is not surprising at all. It’s exactly what Dr. Javle said would happen: the liver board wants me to undergo six more months of chemotherapy and then reapply.

The new chemotherapy will be administered via IV here in Austin. I don’t like getting stuck with needles, but by taking this option I only get chemo once every two weeks versus taking pills twice a day that make me feel bad and require hour-long walks to avoid chemo sores. I anticipate I will feel bad after the injection, but better shortly thereafter. This is my hope, and it is what Dr. Javle has lead me to believe.

The road we travel reveals itself slowly, but true to the form its experts predicted. I will walk the road with a smile and determined steps. It will not be easy for anyone that I love and I appreciate your thoughts and support for all of us. I am facing the journey with optimism and an ever deeper patience and appreciation for my family. They are struggling through this with me because of how this disease affects me. Thank you for supporting them. They need you.

Speaking of your support, yesterday when Debra and I pulled up from a long trip our home was decorated with not one but two Christmas trees, bedazzled with ornaments. There were also logs in the fireplace, wreaths on the door which was flanked with two poinsettias, candles, orchids, santas, hot chocolate, cookies, soups, peppermint chocolates, roses and a tangible remainder of love. It was an emotional day and this welcome home was deeply and personally felt. Thank you to everyone who had a hand in this, and thank you to everyone who has thought of us these past few days. My family is happier this Holiday Season because of your selflessness.

Cancer's update

I had the CT scan on Monday. No one weighed me. I went back to the foreign halls of IVs, nurses and scrubs where they poked me with a needle, taped me up and gave me a big-gulp size apple juice with barium contrast inside it. In case you’re wondering, it’s not a tasty après ski drink. I nursed it for the requisite hour and a half. Then they called me back again. I changed into blues and got flat on a hard table. They tested the IV with a speed-racer injection of saline. All systems go. The giant white donut whirled to life and the next bits of information began to cascade into the computers. It was cataloging the progression or regression of my cancer.

Deb and I ate steak and had a nice glass of wine that night to run-off the memories of the testing and the fears of finding out the results with Dr. Javle.

The next morning, Tuesday, Deb and I found ourselves again in the waiting room for Dr. Javle. We sat for an hour, two hours, waiting for him to show. Someone weighed me. I broke the 150 mark and my weight has fallen to 147. This is the lowest I have gone in a long, long time, and is really worrisome for me. I will have to start eating more and more and more. Looks like it’s time for some Ben and Jerry’s!

Dr. Javle showed up in a good mood. My treatments have shrunk my tumors in all cases. I look good for a cancer guy. The past 10-12 weeks of constrained life have indeed accomplished something positive. He was so late because he had already called the liver transplant board at Methodist Hospital to see if they could interview me this week. We’re waiting to see if that happens. We were with Dr. Javle for thirty minutes asking questions about liver transplants and next steps. In short, liver transplants are hard to get, but we are at least on the next stage of the journey.

He also told me I can start working out again. This is, as you know, bitter sweet since I have loved lying around watching Sports Center while others stay fit. Of course that is not true. I will be out there doing something physical now – it’s about time.

Finally, we go to get the stent replaced this morning. I am fasting in preparation; losing more weight. We hope to get the stent in so that we can go into the Holidays with a brand new piece of plastic stuck in my liver. We find out today.

Because it is so present in my thoughts, I have to say that while we have been here one of our close friends who has been so thoughtful to me during my bout with cancer is struggling in his own fight. He is here with his wife and some of their friends and family. They live close to us. They have kids at our school. He loves to fly-fish. They have brought us Howdy Donuts on Saturdays. They are friends. 

Deb and I have been with them several times here and it is devastating. The fiction of the situation has become so real. It sits in a strange “other” zone that comes and goes with distraction; when you engage in a conversation, when you read, when you walk through a crowd, the hospital room with your loved one lying in bed fades. But when you snap back to reality, all the undeniable presence, sadness, and inevitability are still there, demanding engagement.

We are heartbroken to see our friends in this place. Life brings a shocking reality upon which all of us teeter. It helps to remember that loss is not so far away. Hugging a kid, helping with dinner, making the bed, doing a date night, building a fire, wetting a line, taking a hike, having lunch with a friend—these are all extravagant luxuries to be appreciated.