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.”

From the first day again - short reprise

I found this today when I was looking for information on integrated medicine. It's just a little diddy about my first chemo pills. But I liked the part about Debra so I posted it. 

Sept 23, 8:31 AM – The two chemo pills are now officially down the hatch. No one is going to get them out of me now. They are marked 77 on one side and 161 on the other. 77 seems to be a perfect combination. 161 adds to eight. It’s just a pill, right? Who cares what’s imprinted on it in a factory in Boston’s suburbs where all medical stuff happens? Only someone who is putting poison in their body I guess. I wonder what those numbers mean.

I looked them up. Mine are special pills. The “normal” Xeloda pills say “Xeloda” on one side so you don’t take them for birth control or something. And they give the amount of the drug on the other side, either 150 or 500 for mg. So my pills are especially for me. I am looking forward to seeing if all of them have unique numbers on them, or was it just my two this morning? “77” to me is a very good omen. 161… well I just don’t know.

I walked for an hour afterward with my companion Debra. I am having phantom side-effects already. My hands are numb. My stomach is upset. Light hurts my eyes. My skin is sensitive. People are friendlier. All but one of those was phantom.

But we walked and walked.  Deb is so fast. That’s why I love her. So walkie walkie. Like a cute little meerkat.

Update from Debra After Week 1 of Treatment

We made it through week 1 of Wade's 6 week chemo / radiation treatment in Houston.  There were hard parts and good parts:

Hard Parts:

- We missed him like crazy and its difficult to not to be with him while he goes through treatment

- Wade's illness became much more real to the boys because he was gone getting "cured"

- The drugs and radiation made Wade feel bad

Good Parts:

- We felt like we started "The Cure" this week

- Wade found a garage apartment in West University that is only 10 minutes from the hospital and has a kitchen!  He walks and exercises for several hours each day and the neighborhood is beautiful and a cold front came through.

- He started getting meals from The Hippo Kitchen that caters to cancer patients going through treatment (thank you so much for your help supporting his meals in Houston…you guys have been amazing!!)

- He got to see Hilary Saltzman in the hospital yesterday who had a successful surgery to remove her liver cancer tumors (Yeah Hilary!!)

- He came home last night and was able to see Will's football game and is going to Ben's soccer game this morning

- After his first radiation treatment on Tuesday, Wade went to St. Paul's Methodist Church in Houston where we got married almost 20 years ago.  He sent me this picture while I was driving back to Austin.  Can you believe how beautiful this place is?  Perfect place for Wade to go after treatment.

So, when I look at the list above, I see more good than hard.  

We're taking this one day at a time and loving each other more and more every day.  

Wade posted on his blog about his experience this week…its a good read.  :)

Treatment Day One – St. Paul’s Cathedral

I completed first radiation treatment today with my team, Mustafa, Diego, and Neil. Mustafa retrieved me from Waiting Room F. He was tall and tan-colored. He took me to the control room where he, Diego, and Neil would watch me on CCTV as the free radicals fly around the lead-walled room where I will lie in cotton pants and Pumas. “This is where we will watch you Mr. Gillham. There is a two-way intercom. You need us, you call us.” He was deft and confident.

I entered the room beyond. Diego was there. He smiled and introduced himself. Diego was slightly built with tightly cropped black hair. He’s currently in training and, like a restaurant waiter shadowing a seasoned veteran, he delivers his verbal details to the team tentatively, calling out laser-guided coordinates with false confidence: 194.4 … 194.2 … 193.9 … 194. Awesome. It’s training day with the nuclear death-blaster machine.

I had already seen Neil pass through Waiting Room F several times carrying patient molds back to the radiation room. He looked like a bohunk beefhead. His hair was slicked back but perfectly parted on the side. It would remind you of GI Joe’s blonde-haired military-man style, but long in back and made darker by the styling oil. Neil's torso was meatier and much taller than GI Joe’s muscular 6 foot frame. Neil was probably 6 feet 6 inches. His demeanor was and will likely remain Soldier 101. He is the mid-level man. Today, he had Diego on a short leash.

I will continue to see these characters 28 27 more times by the end of this journey.

In the radiation room there was country music playing. The radiation machine sat hulking in the middle of the room, surrounded by walls of TV screens and heavy cables. It looked like it should have been on the Alien vessel, Sulaco. I guess it's 10 feet wide x 15 feet long x 8 feet tall. It’s painted gun-metal gray but has pink, orange and lime-colored no-slip shower flowers on the monstrous vertical, round opening. 

My mold waited on the metal table, which clearly was designed to slide me through the flowers and into the machine’s guts. I ducked under a massive metal arm and stretched out flat. A silver man-hole sized circle loomed above my face and neck housing a 10 x 10 inch window through which radiation would stream. 

The whole thing is called the machine's “gantry arm”. It extends above the opening with the flowers and is the size of a heritage oak on its side. Even two Neil-sized men could not touch finger tips around its girth.

From my vantage point on my back, I could see the under belly of the gantry. Inside its window and behind the glass thin dark gray fingers retracted and extended, science fiction come to life, forming a jagged, geometric hole. The fingers are made of lead and light fell through them onto my chest making a matching pattern. “Is that the shape of my tumor?” I asked no one in particular. “It’s the shape of the target field,” said Neil, over and out. “Roger that,” said I. Patient over and out.

I laid passively on the table as Diego and Neil pushed and nudged me alternatively. They squeezed my side skin. They pushed my legs to make my bottom more flat. They raised the table. They moved me more. They lowered the table. They drew red shapes on me. 

Project Dino Nugget.

Diego, whom I was liking quite a bit by now, said, “Okay Mr. Gillham. We’re ready to start. The gantry arm is going to move around you. There is another arm under you, and you will see it as the upper gantry arm goes beneath the table. We’re going to be taking X-rays throughout the procedure to be sure you are aligned with your simulations. This will take about 3 or 4 minutes. It’s important not to move.”

Time stood still. The gantry arm did indeed move and the machine made sounds I had not yet heard. The TV monitors on the walls flickered and changed images in my periphery. The machine’s lead fingers moved constantly forming different apertures as the arms encircled me.

I felt cold. And that was it. The country song ended and the three gents re-entered from the safe room.

Neil was back on point. He nodded to Diego to wrap it up. 

…slight pause

Diego: “I guess that’s pretty much it, Mr. Gillham.”
Neil: “Is that ‘pretty much it’, or all of it, Diego?”
Diego: “………………” breathing, silence, the sound of anxiety.
Patient: “Don’t screw this up, Diego.”
We all belly laughed, even Neil. 

Indeed, that was all.

After the appointment I came to St. Paul’s Cathedral just down the street from MD Anderson. It was 2:53 pm and people were leaving for the day. Clearly I missed my calling.

It was quiet in St Paul’s where I was married to Debra almost 20 years ago. I remember the men’s room. And of course I remember the sanctuary. It loses its impact when there is so much life happening around you – just as there was so many years ago. I recall standing to right of the pulpit when the videographer asked me if I had anything to say to Debra, training the lens on my face, “I love you and I am happy to be marrying you today.”

I texted her a picture of the sanctuary later in the afternoon as she was returning to Austin. 

Now you see why I love her.

Life goes on. I have now had my second dose of chemo therapy pills. I had my first two pills this morning and another three tonight. I am fighting the side-effects now even though I don’t feel anything yet. I feel great.

Thank you all for your prayers and thoughts. Thank you for taking care of my family while I am out of pocket.

Wade out.

Too Loved to Leave

As I said a while back, we are building a house. It will be a sacred place when we’re done. The number of times this place has ministered to me is already enough for sainthood. We don’t normally name homes, but for this one, we are aiming high. Mocking birds grace its trees and roof peaks. The mocker is – in my mind – unspeakably beautiful: Saint Mocking Bird. Maybe this house, when it’s a home, will be a mocking bird for us – unspeakably beautiful.

Here’s the thing I love about the house right now while it’s under construction. During the day there are ten, fifteen people here buzzing around applying their expertise. Later in the evening after they have all left, Debra and I come here and savor the forward progress. Beau comes too. He savors the cedar elm leaves of two big ones we had to cut down earlier this year. (Their offspring now shoot up from their stumps and Beau daintily eats their leaves….we don’t know why.) But on some of the best nights, I savor progress and then I sit down on the back porch and absorb life for a few minutes.

Man. Those are nice nights. Right now is one of them: the sky is still overhung with clouds from last night’s impressive storm, there is distant thunder and lightning coming this way, the rain is just now crackling as it pops on the live oak leaves, Beau, who is actually already Saint Beau, is beside me stone-cold chillin’ on the floor--tummy full of cedar elm leaves, I am wearing a new hat I like, Ryan Adams’ newest album is good, it’s playing, he’s coming to do an ACL Taping, and I got tickets. This is a nice night.

Food coma.

Deb and I have talked about this house for hours and hours. We have discussed its appointments and layout. We have studied, recorded, and tracked minutiae. We have met with architects (the wonderful Clayton and Little). And we have gotten to know our Super Supervisor “Nick” well-enough to both take and give good advice at the right times.

When this home is done and everything from the fireballs to the framer-built AV rack says “Debra and Wade Gillham”, we’re gonna have a freakin’ party. We have been planning a house for hosting people we love for most of our marriage. (That’s almost 20 years!) We’re gonna feed our bellies. We’re gonna converse and drink a bit. We’re gonna swim some in the pool (Yeehaw! We got a pool!). And we’re gonna converse-a-drink a bit more. And then we’re gonna plant our bums in front of a fire and conversadrink a wee bit more on top of that. We may even dance on a table. Whew. That’ll be a good night…

… And then morning will come with clean-up duties and bleary-eyed coffee requirements. I like the morning afters. Anyway….back to the story.

When we moved from our old house we left a tree that was everything a tree should be. It was big. It had a cool cast-iron cross inexplicably nailed to its side and partially grown over with bark. It had long, flexible arms with thirty-foot dad-hung rope swings beckoning over green grass and worn brown spots. It had a canopy that formed a huge cake of leaves. It was our tree. We named her Octopus Oak. Leaving her behind after ten years summoned many a happy memory. We had tears that day and since.

But in our new house, where now the wind is just barely making noise as it rustles through the branches and the rain is still crackling away, our new tree is holding court. Those cedar elms we cut down? We cut those down so our new tree could grow. Today she grows only to the north and west with her tresses. She gazes into a south easterly wind and her green locks are blown back to the north and west. I need to name her. What fits? Shiloh? Treeleign? Jane? …still wondering what will stick. There is a front runner. And we are sure we will come up with something perfect. But we know that this tree is going to be with us a long, long time. She is too loved to leave.

If you love something

We’ve all heard the platitudes about doves and loves: Set them free and if they don’t come back, they were never yours to begin with.

Napoleon Dynamite’s Dove Drawing. Notice the moon. 

Don’t be fooled. This dove looks beautiful but it is looking for crickets to eat.

When I stopped to think about this today while going through some growing pains, I think maybe we as parents do the opposite. We grow-up with our kids. We train them in key things that are important to us and that we believe should be important to them. We invest time and money in them. We love them. And then when we set them free, I think we fully expect that they will not return to us. At least not in the same way we have known them.

Some parents joke about getting kids off the payroll. I would pay anything to keep them close. But that’s not my goal. Nope. Not for me. The goal is to train them in the way they should go; according to their bent; according to their passion and then set them free to continue growing and maturing away from us.

As parents many of us recently had the opportunity to release our kids into the world to return to school. School is an uncertain place in so many ways. I am so very grateful my family made the decision long ago to put our kids in small schools with leadership that has similar beliefs to our own. There are lots of benefits to this, but maybe the most important one is the one we are “unfortunate” to have at this moment – the benefit of a caring staff that looks out for each kid – and especially kids with invisible wounds.

Deb and I have focused our parenting on making capable, confident little humans. We push them to think. We praise them when they do. We ask them to be responsible and respectful and sensitive. But sometimes the best parent for teaching lessons is experience and life. Each of our kids is carrying an invisible wound right now. And each of them deals with it, but in ways that are uniquely theirs.

Ben is maybe the most sensitive to my physical problems, which fits perfectly with his physicality. He’s learning when to exert his Benergy and when to throttle it back. We have adopted a new “Ben-ism” around here as a result of his tenderness with me. He was moving in fast to give me a beeg hug as we both laid on my bed but he stopped short: “Be careful. ‘Cause ‘member, his tube.” We use that phrase now to refer to my diet and other evils. For example, when cake is presented to me as a sugary-good temptation, I can ward it off by saying, “No thanks. ‘Cause member, my tube.”

Will is a mystery. He feels the nagging pull of the situation. But the effects are seldom seen. He has called several times from school to see how I am doing. I used to dread getting a call from “Trinity Episcopal School” because it meant one of three things: trouble, sickness, or low meal balance. Now it might mean I can hear Will’s voice on the other end of the line. So I answer with anticipation of his “Hey Dad. How’re you feeling?” He is learning how to care for others, how to let them know, and how important both things are.

Cate is carrying this a lot like I am: deep inside a locked box. When it shows, it is devastating for a few minutes until we get it under control again. It doesn’t sound healthy but we both come by it naturally. Of course, because she is still going through early life and maturing, and because she is our little girl, her breakdowns are more impactful to Debra and me.

We released Cate to her school this year. But life happens and we had a few tough patches. In each of these scenarios, Debra and I got to see the benefit of a caring staff at a small school. The school staff took Cate under their collective wing and protected her. They let her experience the dust and chaos of the fall, but the recovery, or what really matters, was a display of sympathy and resolution. We are very grateful. In particular Cate’s advisor took up her cause and care and is a light in this fog.

These things resolve and we all move on, stronger and wiser. We get up. We brush off the earth’s marks from our knees and palms. We wash our faces of tears’ stains. And Cate goes back into the fog again but we all know she is cared for and watched.  It helps you know. These extensions of ourselves help us have faith in people. They are there when you need them. We have proof, and we are very grateful for it.

If you want to really release something, release a kid. Watch them fly high out of sight. Feel the anxiety of their falls and your inability to catch them. But then one day, they will fly higher than you ever have before because you have taught them what you know and they launch from it. And when they come back to you it will be as your peer. And best of all, if you’re lucky and have done more important things right than wrong, their love will be freely given whether they are physically with you or not.

Quick Update from Debra...

The Gillhams are doing well.  Wade's treatments start in Houston next week.  He will do a combination of chemo and radiation Monday - Friday through October 30th.  He'll come home to Austin on the weekends.  The goal of the treatments is to shrink the tumor in his bile duct as much as possible so that the doctors at MD Anderson can determine the next best steps.  Our hopes and prayers are that the tumor goes away completely.  

Wade met with an oncological nutritionist that has encouraged him to begin eating according to the Ketogenic Diet to assist the drugs attacking the tumor. This is basically foods that are rich in natural fats and protein and low in carbohydrates (sugars and starches). It's also known as a low Glycemic diet.  We have been busy learning how to cook and eat in a whole new way and are busy reading "Idiot's Guide to the Ketogenic Diet".  Luckily, we have learned about a service in Houston called The Hippo Kitchen that caters meals for cancer patients undergoing treatments. The Hippo Kitchen will be delivering dinners to Wade Monday - Thursday while he is living there and undergoing treatment. This is a huge relief to me since I'll spend most of my time here in Austin with Cate, Will, and Ben.

We continue to be blown away by the gracious love and support we have received from our community.  You are all awesome and I see Wade feeling better and stronger every day from your all's generosity and thoughts.  Your meals, phone calls, text messages, prayers, smiles, and hugs are an important piece of his recovery puzzle. Thank you so much. 

My kids have Wadestrong bracelets at school every day. If you need one, just stop a little Gillham and ask for one. Ben especially loves passing them out--whether you want one or not. It's a small thing they can do to help.  To our friends and family that do not live here in Austin…your bracelets are on their way.  Remind me if you don't receive them.

United!

Our dear friend Jocelyn is rooting for Wade and MDJ - In it to win it.

Having a Fit - Radiation Fitting and Schedule

I went to MD Anderson again today.

Monroe Dunaway Anderson. He and his descendants hold the name of one of the world’s most preeminent cancer curing centers. It is clear from wikipedia that Monroe was immensely wealthy having grown his Tennessee-based banking and cotton company to the largest in the world. His foundation received $19 million in 1939 after his death and funded a Texas-based cancer research center with a matching grant of $500,000 (about $8M today). Their only condition was that it be located in the Houston Medical Center and be named after him.

When I visited again today it was once more a shining beacon of operational efficiency and service excellence. I was in, fitted for radiation, and out in under an hour, and I received complementary valet parking. As a radiation patient my parking will remain complementary for the duration of my treatment because we rad-pats are in and out so quickly.  

Anyway, back to efficiency, I literally didn’t find a seat that was acceptable to my particular tastes (away from everyone, with a plug for my phone) before my name was called and two thirty-something ladies ushered me back to the CT room. 

The CT set-up took 25 minutes. They had me lay down on the table which was unpleasantly cold. They placed a hot blankie on me and then we set about the work of fitting my body to my personal mold which was also warm. So in the end the cool table was actually nice. Then they slid me back and forth in a very old CT machine. There was a black, clear, reflective surface inside the inside of the circle. My face stopped there for several minutes… As I sat there staring at a spinning space station behind the reflective surface I began to see my own darkly reflected face. It’s super wide. So is my mouth. My head is squooshed. My eyes are pulled tight. I watched myself. In the end super-villain Modok settled in my mind. He’s below. I actually made that exact face inside the CT machine.

Modok The Super Villain. He's very smart. You can tell because his head is giant.

They pulled me out and set about the tattooing process. Honestly, anyone with a tattoo is now somehow elevated in my mind. They are a level up with game I don’t have. My new tats are about as big as a sharpie point. But they really stung. There is a pic below. It’s just the black dot. I don’t have a large, permanent purple and pink cross on my chest. Dang.

Wade and Cate. My tattoo is not really visible from this shot, nor from outer space.

I am back down next week for final set-ups and blood work. Then I start all forms of treatment on Sept 23^rd at 3:25 PM. 

Treatment Description - Target Start Date Still TBD

This update is just a quick overview of what’s in store for the treatment. We have been getting queries to this effect from friends and family, and the most effective way to communicate is here. So the below is what we know.

I met with the radiologists on Monday morning, Sep 8. True to my experience thus far, MD Anderson was a machine, barely giving me time to get bored with the Barbara Walters special blaring on the waiting room TV. They measured and weighed me, then set about the task of scaring the holy grail out of me.

What was amazing was that my case worker, a physician’s assistant named Daniel Malatek, spent a good 45 minutes with me. That’s longer than I have ever spent with a doctor who’s actually doing his/her doctor thing. The only exception was Cate’s birth when the doctor spent 12 hours with us. And once in grade school, but I don’t think that counts even though we had a stethoscope.

The radiology begins sometime next week in Houston and lasts for 5½ to 6 weeks. That puts me tentatively finishing treatment the week of my birthday on Oct 27. I am going to relish that. The doctors told me that the effects will last a few weeks beyond my last treatment though. So I may spend my birthday in radiation-hang-over land. TBD.

This Thursday I go back to MDA for a planning session. This includes a “fitting” in another CT machine where they hold me still and tattoo me for laser alignment, and then set a cradle that holds me in the same position for all the subsequent treatments. These measures ensure the machine always aims the radiation beam in the best spot to kill the tumor while minimizing the possibility of collateral damage to other organs in the vicinity. And they give you a tattoo. Awesome.

I also begin chemotherapy next week, if the radiologists get all their planning and positioning done. The doctors want to start both simultaneously to minimize the duration and side effects. The chemo is with a newish drug called Xeloda. I have heard from other doctors that it can be a very effective drug for the types of cancer it targets; fingers crossed.

Side effects from radiation and chemo comprise a long list of unpleasant things aside from the tattoo. The two most concerning physical things are nausea and the brown derby. The most concerning mental thing is that I could be very tired a lot of the time. This is hard due to the fact that when I am not sick, I don’t want to be tired. The doctors were sure to say that I might not experience any of these side effects, or may only experience them in slight amounts. But their responsibility dictates that they tell me all of them.  They also gave me medicine to combat the two physical ones. There’s nothing for fatigue except to sleep.

To anyone who reads this, thank you for your thoughts and prayers. We feel confident about the treatment, and I am actually excited to get going on ejecting this thing from my body. I feel super without the tube. It is a life-changer to have that gone. 

: )

Wade

MD Anderson Recap - No New Bad News

We went to the oracle again this week. The excellent news is that there is no new news. There is no additional cancer. There are no new bad surprises. We are planning to go back again on Monday to meet with the radiologist who will lay out the specifics of the treatment plan. That likely begins the week following. 

What God Said

Before you read this, you need to know several things. I am not religious in the sense of being at church whenever the doors are open. I was raised so, but moved away from that a long while back. I am a believer. I do spend a fair amount of time "talking to God." But I don’t spend a lot of time “talking with God.” But there have been times in my past when I have felt a clarity of thought that was not my own. It was in my head, but not of my making. I know. That’s not normal. Well, what can I say? Sometimes "normal" doesn't fit the experience.

I was struggling with what it looked like to see God last night. I wanted to thank Him. I was addled from the anesthesia effects from my recent tube-removal operation. It was successful, and when I came out of my snoozy state I wanted cheek-kisses from the nurses to celebrate. I know I got cheek-kisses, but from whom is a mystery to me.

But now I was lying – more like tossing – in my bed trying to put definition into what God would say if I wanted to let him know that I was grateful for my tube being gone. I had asked Him for that.

You know, here’s what came to me and what remained with me today. I thought about my precious little guy, Ben. If Ben had a tube in his body, and if by some unfathomable circumstance I had not been able to be with him when the doctors were trying to take it out, how would I act when I saw him without the tube? How would I be? There is no question. I would be ecstatic for him. My joy would be uncontainable. I would hold him and love him and tell him that I was so happy for him. I would tell him that if I could have had that tube in me instead of him, I would have done it in a split second. I would have held him and felt his warm little back and too-tight embrace. And then I would have watched him go unencumbered to life. That is how I imagined telling God thank you last night. I had a good experience.

I also took the opportunity to talk to him about my condition. I asked him if I could please not have to go back to the tube. He said yes. I asked him if I could be miraculously cured of my cancer. He said, “It’s not that I can’t cure you. I want you to go through this. There are things you haven’t learned yet, and to cure you now would deprive you of their benefits.” He said these things in a way that I seriously cannot articulate or reproduce here. They had such economy, clarity, and force. They were structured in an unusual syntax that I can’t conjure.

But to try -- he said them while in my mind the meaning behind His words formed.

When he said, “It’s not that I can’t cure you,” I immediately had images of indescribable beauty and power. The images from the Hubble come to mind now, although they are somehow less impactful than what I saw last night. The power He commands. Power to bestow Life. Power to imagine and then create Light and embed energy within it that we have yet to comprehend let alone tap. Power to create Dark and Despair. Power to cancel them. He has the power. He could do anything to me or for me.

An amateur found this Hubble jewel when digging through images that were unlabeled by NASA's scientists.
It was taken when Hubble was pointed at a dark space in the sky, formerly unknown to us to contain any heavenly bodies. The "stars" in this image are actually galaxies of stars.

But then He said, “I want you to go through this.” The importance of me being present with my family through this whole thing was crystal. It was the image and thought of being vulnerable to the effects of this treatment and going through it, but remaining strong, present, and vibrant for them. And through it, we would gain … benefits … that I don’t yet understand. But it’s important to hold on and to look for these things so that when they do present themselves I am aware enough to capitalize on them; I am there and can capture their value.

I don’t know the lessons to be learned and benefits to be gained from this time in my life. I am not sure what this holds for me or for my family. But among all the bizarre meanderings of my mind last night, I was struck by the clarity and presence of this conversation with God.

I don’t know what version of my future is in store. But I do know that my loved ones will benefit from it, and that gives me strength, determination, and patience to endure.