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.

Back to Houston

Tomorrow Deb and I drive to Houston. We are going there so I can have a CT scan done again at 1:00 pm. This is the test that feels like warmth cascading down your torso while you lie in the big pulsing white donut. It’s not too unpleasant, but it wouldn’t be a popular ride at an amusement park. Tuesday, we meet Dr. Javle who will have looked at the CT results and will tell us how the cancer reacted to the treatments we have undergone. As I said earlier, if the treatments made me feel as bad as I have over the past few months, then the cancer is definitely in trouble. Then Wednesday the famous Dr. Lee will try to replace the stent once more.

Deb and I are confident in our security with one another no matter what we find out on Tuesday. But the fear of the unknown is difficult to manage. It keeps your mind busy while you’re trying to fall off to sleep. I am confident that no matter the outcome my family will be secure; no matter the findings I will be here for a long while. But the pending verdict certainly has my mind churning.

A very close friend of mine told me about his daughter who went to a park to let a helium balloon go to help her visualize my cancer floating away into refracted light. I have used this very same trick in my past to let go of things. That included my wife at one point; before she was my wife and I had to let her go to hopefully one day have her back --- just like the poster. Thankfully for me, that story turned out well and she is my life partner. I can tell you that she has been with me heart and soul through this, and is a diamond-plated treasure. I have told my kids about how special she is, and how lucky I am, we are, to have her.

Another time I let go of a balloon was with this damn cancer. As I watched that spec disappear once, twice and then forever become an indiscernible part of the vast blueness, it helped me remember that I am not alone. It’s not in my control and I can’t beat it alone. And I haven’t had to. Any one who reads this note is on my team. And there are many more who don’t even know I keep this blog but who pray for me and my family and think about us daily.  Thank you all. I think without that balloon visualization and all the people supporting me and my family, the anger and resentment would overcome me. There is no love in that.

Debra and I noticed today that we are very close since my diagnosis. It’s not unusual in these cases to have more patience for one another. But it’s a benefit and we appreciate it. Another benefit is the number of friends we have grown to appreciate more deeply. Still more include my deeper relationships with my kids, my extended family, and even my dog.

Life is hard – no impossible – to justify. It brings death and it brings beauty. It brings brittle cold and glowing warmth. It brings morning dew and hurricane. It is yin and yang. No matter the information on Tuesday, our lives have been made richer from this experience. Thank you.  More Tuesday(ish).

Listening to the National

My body got the best of me and I had to sit down for a few minutes just now. I have been feeling pretty good for the past few days. It lasts about 9 hours and then my gut says, "Hey all surrounding organs, we are in bad shape and bad moods. On top of that Mr. Brain up there decided to shoot us full of radiation and make us this way. So let's kick some booty and make him feel bad again." Then I am generally done and have to sit down. Case and point as I sit here typing in my blog.

Today I am solo as my lovely wife has just left for a highly-deserved trip to a get-away with some high-school friends. I seriously cannot even remember most of my high-school friends, but hers are literally some of the most special people in the world and we are sooooo lucky to be able to count them among our close friends. She is going to a health spa for yoga in the morning and evenings. Don't worry. The resort just got its liquor license so they'll have some other distractions as well. Who can do that much yoga without actually losing some limbs? She is out until Friday. I am hopeful she is still able to string together sentences when she comes home.

I am bravely facing the week-long task of solo child care by having my boys shuttled all over Austin by our dear friends and my in-laws, and by supporting Cate with her finals. It is a piece of cake and I feel wildly indulged to be able to do this right now.

Also, I actually feel a little bit guilty to be sitting down right now. Which is a great sign. There is no better indication that I am getting better than that I feel guilty that I am not busily doing something to add value somewhere. I suppose I can debate that I am adding value to the digital economy with my blog --- hard to justify the investment though…

I know you all care since you're reading this. So just so you'll know, I am feeling better lately -- the past two days. I went to a dinner party. I didn't have to sleep all day to recover. I went to a kid's birthday party. I talked on the phone. Danger. I could be recovering from the gentle balms of MD Anderson.

Thank you all for prayers and reading. I will begin to post happiness here soon.

Wade

Stent Update

The update is both good news and other news. The good news is that stent is in excellent shape and my labs look very good. That means that there is no extraneous build-up on the stent and it is doing its job very well after 2 and 1/2 months. There was no need to replace it. This is very good news in light of the other news below.

The other news is that my insides are pretty torn up by the radiation. Dr. Lee said my intestines and stomach are really inflamed and that to replace the stent would have been impossible if it had been required. So thank God that the stent is looking good and doing its job. In the words of Dr. Lee, "It's the Porsche of the stent world; a 2015 model in great shape and doing its job."

The next step is to let the inflammation heal/reduce for about 5-6 weeks and then try again. This will be the same week that I am down here again for testing in mid December. What's my Christmas present?? A new stent and a good-lookin' CT scan.

Thank you all for your prayers and positive thoughts. While the stent is still in there, it's in good shape and I don't have the tube!

Update and Schedule

Hello everyone. I have not been posting because honestly I have been feeling pretty low. The radiation and chemotherapy ended on Oct 30. My doctor told me that the radiation would continue to build and the nausea and discomfort would as well. I hoped he was wrong. Turns out, that decade of training he had and the daily experience are worth something, and in fact I have continued to go downhill on my physical state. I really do not encourage anyone to try this at home. The good news is that now that I am no longer adding to the chemotherapy or radiation with daily doses, so it must be on some half-life schedule and therefore I will be feeling better before long. When that happens I don’t know. I figure if I feel as bad as I do the cancer must be getting a major walloping since this stuff is targeted to kill it and only do damage to me.

The next steps on this journey begin quickly. I go back to Houston this Friday, November 7 for another procedure to replace the bile duct stent placed in mid August. It’s time for this one to be removed. This was not an unpleasant event but it’s risky because the passage through which the camera and new stent must go is constricted due to inflammation from the cancer. If it’s too constricted, then I could end up with a tube in my abdomen again. Referring back to what God said, I don’t believe this will happen. I believe I will get the new stent uneventfully and return home on Saturday.

After that the next visit to Houston is in mid December for a check on the treatment’s effect on the cancer. I mentioned earlier that my cancer markers have been coming down during this treatment. This is a good sign but the real check point is December. The delay comes from the doctors letting the radiation percolate for about 6-8 weeks. The doctor will use this information (which is hopefully very good) to present my case to the liver transplant boards in Houston. They apparently have visibility into other lists around the nation and may or may not be willing to put me on their lists. Their decision criteria is not clear to anyone including my doctor. (Prayer here is appreciated.) Once presented I will either go on the list or begin a series of chemotherapy treatments for a second shot 6 months later, or a combination of the two if the list is long and we need to control the cancer with more chemo while we wait.

The new chemo will be on a bi-weekly dose administered here in Austin. Its side effects will be more intense at the time of administration but will slacken and I should feel better after a couple of days. This will continue until we get a liver for transplant.

To everyone who has been praying for my family or taking care of them in some way THANK YOU. I cannot begin to tell you how important you have been during this process. It has been very hard, and continues to be. Thank you so much for your caring and love.

Mac Richard's message on hurting and Johnny Cash's song on the same

Johnny - http://vimeo.com/3104201

Mac - http://vimeo.com/109470758

The 401

These days I am a little bit skinny. This is not an issue I have dealt with in the past. Since I was a very young fella my dad used to tell me I had “tree trunks” for legs. And once in sixth grade a cute girl named Laurie Anderson told me I had a nice booty. (Sorry Debra, that was a highlight for me as a sixth grader.)

I got my legs from my dad. I can recall once – again in a river – I had been splashing along the other side when I suddenly realized I needed to get across to the adults. I was little, maybe six or seven. I began to wade out into the current and was quickly overwhelmed and pushed off my feet. It wasn’t life threatening, but I remember it pretty vividly so I know I was out of control. There was a little commotion and then my dad calmly walked to the middle of the stream and plucked me out. We were with dear friends named Jerry and Judy Polson. Jerry looked at me hanging there in my dad’s arms and said in his Oklahoma accent, “Your Daddy’s got strong ol’ legs like yours. He’s just bigger.” I never thought of my dad as having strong ol’ legs until that moment. But after that it stuck with me. Anyway, I had strong, thick legs.

Up until about first grade I could use those legs to hit and tackle with my older brothers and held my own pretty well despite being 4 and 12 years their junior. Then my first choledochal cyst showed up and as a result I was precluded from any contact sports, including soccer and baseball. So after languishing with shin splints from hurdling in middle school and early high school, I picked up mountain biking. That was much more aligned with my “tree trunks” and 5’9” towering build. Mountain biking was a new thing that no one knew anything about. Surely there would be no contact with any immovable objects, right? I mean, what could go wrong? The logic for why I was allowed to do this sport isn’t clear but I thank God my parents never investigated.

When I arrived at Baylor with my bikes in tow there was no cycling to speak of. I was a bit of an anomaly in my tight pants. Before long I found others who could ride with me and we formed the first Baylor mountain biking team. Together we christened many of the trails in Waco’s Cameron State Park with our own sir names, as well as lots of other names. Ironically, none of those trails is named “Gillham” or “Gilamonster” after me. A trail only got your name if you couldn’t ride it. Those were my glory days filled with scrapes, cuts, and feats, and indeed I do relive them with the right people :-) .  

But all that is background. The point I am getting to here has to do with a ride in Crested Butte, the Mountain Biking Mecca of North America. I had always wanted to go there through college for a mountain biking trip but ended up working all my summers. I finally got to go and found out several things. First, there are some amazing riders in the world. Second, there are trails that I crashed big on and couldn’t clean, but I didn’t get to name them “Darth Wader”. And third, it was indeed a Mecca and if I had been a little more adventurous I would have upped and moved there to be part of the scene.

The ride I referred to above is a gargantuan one that has always filled my cup. It is simply called “the 401” (four-oh-one). If you leave from town it's about 24 miles long with total climbing of around 14 miles and 4,000 - 5,000 vertical feet. Of course that is literally nothing to some of the biking gods here in Austin. (Lance, Anna, PJ.) But for me, that is a four-letter-word big ride. 

It starts in town at 8,885 feet and climbs another 1,000 to Mt. Crested Butte, the ski town just up the hill. The climb is all asphalt and as cars pass I always imagine the occupants looking at me with a cool nod of acknowledgement for my efforts. “There goes a real rider,” they say in the coolness of their gas-pedal comfort. (I have no idea if they say this or not but it feels cool to think they say something like that.)

Unfortunately, this is in fact the “easy” part of the ride’s uphill segments. You can push a big gear on the asphalt and maybe even keep up with the town buses. Then you leave Mt. Crested Butte and climb into Snodgrass for another 500 feet or so. After that, for better or worse, you descend into a hippie biodiversity-ecology-experiment town called Gothic. (Every time I go through Gothic I think it’s the birthplace of the legalized marijuana movement.)

Outside Gothic the real climb begins to the top of the ride at 12,200 feet. There is a stunning mountain along the south side of the road called Gothic that looks like the flying buttresses of a Gothic cathedral. Somewhere along here the mind starts bending as you really begin to suffer. There are long straight sections of uphill road that pop into mind when I think of sustained pain. They are particularly brutal when you round the bend of one climb and see another, longer one waiting for you, towering in the afternoon sun. Up you go…and then when you finally arrive at the top of the road at Schofield Pass you have another 1.5 miles of climbing through single track to get to the top.

Why would I suffer through this? Let me tell you something amigos, the rewards are worth the pain. When you arrive, the top is literally above tree line and the Rockies sprawl unobstructed before you – the purple tinted Maroon Bells, Gothic Mountain, Crested Butte Mountain, and best of all, a 6 mile descent through chest-high wild flowers down some of the very best single-track riding in the world. For a passionate rider, it is an out-of-body experience.

More than halfway down the descent, Maroon Bells in the distance, wild flowers in the foreground.

When you finish, you roll through town to the outdoor pizza place on Crested Butte’s Main Street for after-ride beer and pizza. The memory of sitting outside at that pizza joint, beer in hand, mud on my face and legs, and the calm knowledge that I have just finished one heck of a hard ride is one of the best I have to relish. All that pain and suffering pay off with an experience and memories that no one can ever take away.

Many are suffering right now, including me and my family. Why? This is an all-consuming question that is never really answered without a degree of faith. One end of the spectrum states suffering is without purpose; the world is a tough place and bad things happen. This view does indeed require faith that there is no other – bigger – reason for the suffering. That is a lonely, hard, long road, and one I have consciously chosen to avoid. The other end of the spectrum is that pain and suffering are not without reason, and can and do ultimately lead to beneficial results. My pastor* taught a message on it this past Sunday that blew my mind. I had never internalized the immense suffering that the disciples underwent while their leader, mentor, hope, inspiration, messiah and friend laid dead in a tomb - victim of a political plot by conniving church leaders. In hindsight we can see the benefits of the beautiful belief system that came as a result, but at that time things were dark.

On the 401 the benefits are so wonderful that I will actively chose to suffer through the climb. The descent through wild flowers, the view from the top, the pizza, the beer, the recognition – these rewards have filled my cup on many occasions and hopefully will one day again.

I believe my family’s current suffering has a higher purpose too, a positive outcome of some sort that I have yet to understand. This experience and lack of knowing the long-term picture is helping me to appreciate the small positive moments in spite of physical and mental difficulty. Last week was very hard physically, but we got confirmation the treatments are working as the cancer markers in my blood are coming down. I can look back and see that there is difficult road behind me and my family. There is more climbing ahead. But grinding it out is a little easier knowing the treatment is coming to an end and it’s working.

I am not saying any of this is easy for me, or anyone. But what I always found rewarding on the 401 was to look back down at how far and how high I had come. That long difficult road behind me always made the remaining uphill a little less daunting. Sometimes when I looked back down, far below, there would be another rider cranking up behind me. I know that for him or her my silhouette on the top of the crest was an inspiration and motivation. Maybe part of the payoff from my current grind is inspiration for others. It’s one I can only indirectly appreciate. But it’s meaningful and without this suffering I would not be a part of helping someone else. 

Let me also say that I do not think finding the benefit is easy. I cannot imagine the depth of the grief I would feel if one of my children were going through what I am, or worse. No parent should ever have to suffer those burdens. All I know is that now, with this level of life experience, I would have to search for a higher meaning, a benefit, a positive outcome to justify the suffering. If there were none, ever, then I just don't know how I would deal. I just don't know.

We all experience suffering of some degree. We all have pain and don't understand why. I chose to believe there is a bigger purpose behind any significant suffering I or my loved ones must endure. I had never appreciated the benefits so much as I do right now. Small or large, they make this all more manageable. 

* Mac Richard at www.lhc.org

The River

Life is a river. It’s a lot of things to a lot of people. But in this particular writing it’s a river.

Rivers and I go way back. Not the Class 5 style river you find in Colorado, but the Class 1 or 2 style that lends itself to a good jumping rock, a rope swing, a lazy float trip, and watermelon cooled in the deepest hole. I have a distinct memory from underwater in Arkansas by a jumping rock where a rope swing dawdled in the current above my brothers and me as we pushed a watermelon back and forth through the crystal green water. It was slow motion, inverted catch.

I suddenly noticed a water snake weaving out from under the jumping rock about halfway between my oldest brother Pres and me. White bubbles shimmered to the surface between it and me as it swam toward the far bank. (Nothing moves like a snake, especially in water, and most especially when they are underwater.) I pushed the melon away from me, down and toward the snake’s undulating form with Pres floating suspended on the far side waiting to retrieve it. The melon arced under the snake, moving and floating lazily upward and toward my brother. The snake moved over it and past, flashing in the bent light from the river’s surface. It’s a Super 8 memory film that plays on demand for me. The colors are vivid. The snake’s movements are almost indescribable, and it’s probably bigger in my mind than it was in reality. My brothers and I are there in the water. And all the while, the river moved past.

That was when I was a kid, less than 10. Not long ago, I was on another river with several good friends. We had laughs on that river that made us incapable of doing anything else. Those are the health of life. Someone had hatched the idea of paddling up the Rio Grande in the Santa Elena Canyon for a six-hour out-and-back canoe expedition. What could go wrong? The going was not too tough but keeping the canoes straight proved to be challenging to us Austinites.

At one point we were paddling furiously up-stream against a small riffle and making very little headway. Our guide, a long-haired river yogi nick-named Smokey, watched us thrash as he effortlessly dipped his oar and moved up the riffle. He was solo in his canoe and standing in its direct middle. For those of you who don't know, this is a feat reserved for canoeing deities. Him smiling at us was the mildest, sweetest kind of getting made fun of that I have ever experienced. I captured video of the moment: a former UT football player and a very fit young doctor paddling like war gods as Smokey watches them go backward down the riffle. We have laughed at that like kids in church.

Once past the riffle, we continued our trek up the river to a landing spot whereupon we refueled ourselves with sandwiches while the bugs fueled themselves with us. And then we headed back down the Rio Grande for the remainder of the trip. The going down was considerably easier, and being fairly adept at navigating calmly flowing waters, my partner and I zigged and zagged from wall to wall going under and through rock formations. It is a dear memory.

Rio Grande, Santa Elena Canyon. Mexico is on the right. 

In the end all of us amigos ended up at the same sandy take-out spot, tired, wiser, more sunburned, and closer friends. And the river flowed past behind us as we cracked a cold one.

Life is a river. It never stops. Even in its calm expanses it is moving me and you and hundreds of millions more along. When we sleep, it moves tirelessly. When we wake, it is moving there, welcoming us to its waters. It is neither benevolent nor capricious. It just is. It flows whether we acknowledge its movement or not. It is like a harvest moon, shining equally on plentiful crops in good seasons and empty silos in bad ones.

I have been marking its passage lately with Xs on each day that goes by in my treatment. I mark through “AM” for morning chemo and walk. I mark through “IMRT” for mid-day radiation. I mark through “PM” for evening chemo and walk. And then I mark the whole day off with a large X. After tomorrow, Friday, October 10, I will be halfway through the treatments. What I recently realized is that no matter whether I do any of the steps in my treatment or mark any of them off as complete, the days turn over. The river moves.

While lying on my back today with acupuncture pins in my feet, hands, arms, face, and ears, I thought back on river times with my family: perfect rope swings with dear friends, phantom snakes on the bank, catching craw daddies (a.k.a. catching “daddy-head wobsters” to Ben), skipping stones, building river-rock dams in Crested Butte’s frigid Coal Creek, diving in deep blue water from our friends’ ranch springs…. And always the river is flowing.

This is not a sad thing; but it is something to note. The river moves. It does not wait. It does not return. It is up to us how we zig and zag, or if we do at all. It is our decision to smile with excitement or grimace with fear, either way we are in the river with that snake, and we’re all going through that riffle.

Hi. I'm Wade.

Hello Friends.

I have not been feeling well for the past few days and so I have not been writing. The mood struck, and so here I sit, trying to put down some of the thoughts I have had through the nausea.

First thought: nausea as a general concept is not good for writing.

Second thought: nausea can be battled with walking, also not good for writing.

Third thought: I forgot this thought because I have the dreaded “chemo-brain.”

An aside on chemo-brain for a moment: it is a hilarious but deeply frustrating chemotherapy side-effect. I am not sure how many people even know what it is. In short, the chemo is attacking cells in all parts of my body including my brain and as a result my short-term memory is suffering. I am like that guy who introduces himself over and over again to the same people: “Hi. I’m Wade.”

For a real-life examples here are a few that I have dealt with. I left my medicine at home when I left Austin for Houston this week. I remembered while passing through La Grange, just about half way to Houston. Debra, the angel, met me on the road to bring them to me. There is a story within that story though because I had also left a big umbrella at home, which I remembered at the same time that I remembered the meds but forgot to tell Debra to bring. 

Here’s another little story bring a tear to your eye
I was taking chemotherapy so my cancer would die
I took the chemotherapy, or so I believed
I did my one hour walk. I was so relieved
I came into the kitchen and what did I see?
My chemotherapy was there, laughing at me!

I have chemo-brain in a bad way. I had to take the hour-long walk twice that night. I don’t have any idea why that story rap-rhymed above. It just did. Maybe that's another side-effect.

Hi. I'm Wade.

So anyway. I was walking for those two hours the other night and I had an epiphany. I know each of us knows the phrase “Beauty is in the eye of the beholder.” It’s a phrase we have all used at one point or another to describe why one person thinks another person is pretty or attractive that we would never, ever think was pretty or attractive. Can I get an amen on Donald Trump?

I was walking and looking for a house I saw on my first night of walking. It has a wrap-around front porch and sits heavy, back from the street with warm lights, thick, protective pillars, comfy wicker chairs and a grey stucco color that makes it blend perfectly with the verdant grass and octogenarian oak trees. The porch is lovely and I want to show Debra when she’s next here. As I was searching I found another house with another porch, this one was too well lit and had too many arches.

BAM. Epiphany. The home was newly built, the ground was freshly laid grass squares, and it dawned on me that the owners very likely spent hours perfecting how that porch would look to all who passed by. They probably went around and around with their architects and builder getting depth and arch spacing just right. And in the end, it looked perfectly lit with exactly the right number of arches. To the owners, when they pull up to that new house in this beautiful neighborhood, the warmth of accomplishment and welcome is palpable. It’s exactly what they wanted. It is without flaw in their eyes.

What’s the epiphany? It’s hard to articulate, but here’s my shot: not only do people count on the scale of beauty and beholders, but this statement of tolerance can also apply to almost anything. It becomes a golden rule for tolerance. Feeling judgmental of something someone likes? Beauty is in the eye of the beholder. 

It allows for one person to want a gold toilet and another to want no toilet at all, just stars and a lonesome view. But more important it allows for Mr. Golden and Ms. Starry to coexist without judgment. One person’s diva wears Prada and another’s wears Converse. One person’s Radiohead is another’s Bob Dylan or Neil Diamond. One porch sits next to another, with each being the best in someone’s eyes and neither having a corner on the market.

The real key here to making this a true golden rule of open-mindedness is the nuance of infringement. As long as we as humans don’t force love of a thing on others who don’t feel the same way, we can coexist. This even applies with one religion and another thriving beside each other. I know, it’s heresy. But it’s important heresy to internalize.

“Hi. I’m Wade.”