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.

The Tube Is Gone! - ERRANT POST

All - for some reason blogspot sent this post out as new today. No idea why. The tube is not gone. This was the first tube, from September.

I'm really excited to report that Dr. Lee at MD Anderson successfully placed a stent in Wade's bile duct today and was able to remove the biliary tube that was driving Wade crazy.  We view this as a big victory.  Wade was so excited when he woke up from the procedure to find that the tube was gone.  I hugged Dr. Lee when he delivered the news in the waiting room.  Wade is super tired from a long day and undergoing general anesthesia and we still have a big week ahead with another scan and the meeting to hear the final treatment plan but we're excited to take in a victory in this journey and savor the moment.

Thank you for all of your prayers and well wishes.  Wade really wanted me to post an update tonight because he knows you all care and are worried.

Lots of love,

Deb

MD Anderson - Part the Third

We heard from MDA. We are heading down tomorrow now. It's a big day. They are trying to remove the tube… It's a super big pain in the booty.

They were not going to try unless they thought they could do it. So fingers are crossed, rosaries are rubbed and fingered, crosses are made on our chests and foreheads, prayers are whispered, chants are welcome and cheers are too. We are hoping for the procedure to be successful and that the tube is gone gone gone when I wake up tomorrow evening. Can't guarantee a post. If it's there, that is going to be tough. If it's gone, I will do my best to post something. Thanks in advance for thinking of us tomorrow at 2:00 PM.

We have Wednesday off and hope to drop in on the Houston Museum of Fine Arts if we have time and are feeling good.

Then Thursday we do a PET scan to see if the little bugger has spread. If it has, then well, I have some different chemotherapy to undergo. We will again be hoping and praying that it stays in the spot they have already seen it. We find out all this news this week. Then chemo and life happens.

Here's hoping for a week of double-rainbow good news.

Wade and Deb

Double Rainbow All the Way!!!!

Big - from Wade

Big. What’s big in this life? Why do we stop sometimes and think “Whoa. That’s big”? What makes us do that? I’m not so much thinking about why we say ‘whoa’ instead of ‘ah’ or something else. But more about what are the things, events, places, experiences, emotions, people that make us say ‘whoa’?

The 2-dimensional cube of mind-blow.

My daughter made me say whoa tonight. We were driving down 360 highway going south from Spicewood Springs and Great Hills. She was telling me about things that, in fact, had recently made her say whoa. The first was that if you have a certain kind of mind, you can look at a two-dimensional cube like the one here for the first time and see that it is two cubes at once: one with the higher square in front, and one with the lower square taking the foreground. 

Then, once your mind can wrap its arms around that concept, the cube can be static and dynamic at the same time. While I have known this for as long as I can remember, I have just seen my daughter internalize it. There are two things here that are big to me. One, that I am here to be with her. And two, she’s pondering school insights even when her class is long dismissed and her homework vanquished. God I love this girl.

Well then, she tells me about why she loves symmetry. (BTW, I love that word with its double m’s. How apropos.) We had just come down the long hill to the north end of the 360 bridge. “What a t’ing a beauty she is!” forming two opposing black bars with dividers and supports, silhouetted against the sun-drenched slope of the long hill up to West Lake Drive. And there at West Lake Drive, even the stop lights swing in unison and symmetry on either side of the divided lanes.

With this backdrop, which she pointed out, she let me know why she liked the movie Almost Famous but couldn’t connect with The Eternal Sunshine of the Spotless Mind. Among other things* she said, “The symmetry of the movie’s themes with its cinematography is better, more challenging, more thoughtful, and more appropriately matched in Almost Famous.” I thought to myself, “Dude. That is totally what I was gonna say.”

I realized I had had myself a big moment. Damn, my little girl was so interesting and I was spending time with her. I was ecstatic for her to meet someone awesome to be with, who would appreciate her insights like I do. But for now, I was happy taking her to a friend’s house where several kindred spirits were waiting. This was a big conversation and a big insight for me into who she is, and who she is becoming, and who she will be one day a long time from now.

Here’s another big thing. I was small today. I did something not big. I am watching with a great deal of anxiety as I try to determine if my precious people around me are doing well with the uncertainty of my cancer. Today, I invited Will and Ben to throw lacrosse balls or a little bit of football in the front yard. They obliged me. We started to the garage but were waylaid en route by the new juicer from our friends in Cali. We mixed up some pineapples with the skin on (!), some apples with the stem and seeds still inside (!), some whole (!) kiwis, some other equally cool stuff, watched the juicer hum, spin and spew juice into a pitcher, and then drank that sweet nectar down.

Meanwhile Will had grabbed my old baseball mitt. When I entered the garage, he said he wanted to play baseball instead. I can’t throw right now because of this damn tube. (Normally, mind you, I can knock a woodpecker off the side of a century-sized live oak, while running.) So I said, “I can’t play that man,” and closed the door.

It was an uncool thing to do. I should have stopped, thought for few seconds, and said something like, “No worries Will. I can’t throw though, so you’ll have to play something where I can watch.” Because duh. He’s dealing with a lot of stuff right now in that head of his, and not thinking about my feelings all the time. Being the adult, I should have thought of that.

But what’s big, what’s necessary, what’s a surprising thing, is that through a lot of work and thought, I can forgive myself for that and learn from it. Next time I won’t be so selfish. Next time, I will stop and realize that while I may have said I wanted to throw lacrosse balls or footballs, what I really wanted to do was spend time with my boys. I don’t care about the activity, do I. No. I don’t. Holding onto that is big for next time.

Thank God for our intellectual ability to think through these things. It’s what introspection is for after all. If you can’t be introspective, it’s hard for you to improve. You go through life and have very little idea of how your actions may affect someone --- including you --- unless it’s blindingly obvious.

These few minutes of introspection gave me a lesson that I have already used tonight. While my pizza grew cold from Austin’s Pizza, I watched each boy make five three-point attempts times two shots plus two sets of Muhhhhhhnky Dunks. That big moment with baseball gave me the ability to appreciate the next one fully.

Last big moment. Life can be stressful. It moves quickly. You gotta keep up. Ordering food. Driving to kids’ houses. Mixing juices. Buying stuff (like my new camera). Going places. Meeting friends. Making time for yourself. Walking the dog. Reading a bit of the NY Times. Drawing. Watching a really stupid video. Watching it again. And one more time. Eating. Cleaning up. Feeding the dog. Watching a movie. And on and on it goes. This constant to’ing and fro’ing generates a level of urgency in all of us. It’s maddening. It’s a beautiful master, but it takes its toll on us nonetheless. 

What became big to me today was talking to Deb about her night with her mom. It was a wonderful night, and the two of them shared in ways that only a mom and her daughter can share. Things were good. Things were open. Things were how and where they were supposed to be. The waters were calm and deep. And the two of them really had a bonding night. The point is that Deb was so present with her mom. She was there and there was nothing to badger her for the moment. She was in it, the moment that is. And what is big is that the moment delivered.

What’s big is putting the busyness machine on pause and realizing that when we take time for something important to us, it’s time that is ours to spend and we’re spending it on something we care about no matter how big or small. It’s time that is given to us, for us to use.

We can clear the fog of do do do do do do for good. Each of these moments is big because we are there in them. We’re in the car going to the store with each other. We’re on the phone with a close friend. We are eating across the table from our family member. We are walking a dog who ministers to us selflessly and wholly. We are cleaning up the kitchen with our spouse.  

If I can pause to consider why I am going where I am, and with whom, and be more present in those moments, then I can resume with the appreciation and self-benefit that can sometimes get lost in the fog. Whoa. That’s big.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

*If you’re interested in more on why Cate thought that about the movies, read on. She said of Eternal Sunshine of the Spotless Mind that anyone can do a grey room with grey clouds in the sky and a mopey actor to show that someone depressed. But the scene from Almost Famous with the lead singer of Stillwater, Russell Hammond, atop the highest point of a roof, about to dive into a pool too shallow, and screaming, “I am a golden god!” perfectly captures the rise and fall of the band, their relationship with William Miller the reporter, Russell’s self-absorption, and Penny’s doomed love affair with him. Boom. Mind blow.

Battle Booty - From Deb

Let me explain the title … I went to the mall shortly after Wade got home from Seton Hospital a few weeks ago on a mission to buy him some jeans that wouldn't fall off his new slim lined frame. (He's lost about 20 pounds you know.)  While at the mall with my friend Robyn (who had joined me for moral support) we dashed through the Nordstrom lingerie department to pick up some new undies for Cate and me. (I apologize. I know this is TMI but there is a reason I'm telling you this. Read on.)

While we were in the lingerie department at Nordstrom, I noticed a table filled with cute new Hanky Panky undie designs and one in particular caught my attention; Camo Hanky Pankys!  I had the thought that I should buy a pair for Cate and me and we would gear up our Battle Booty in support of Wade's battle against this cancer beast.  I told Robyn my idea and she loved it and proceeded to buy a pair for herself in support too.  I shared the idea with a few more friends which resulted in multiple purchases and a distribution plan. (Thanks Robyn, Jennifer and Tiffany.) I started receiving pictures like the ones below from friends that were running around town with their new Battle Booty underwear purchases….

I was on a run yesterday and was praying about how I can best support Wade in this battle we are in.  The thought came to me (with a lot of clarity) that I should blog about my Battle Booty plan in hopes that more of my girlfriends, cousins, nieces, mother and aunts would join Cate and me and gear up with some Battle Booty.  To the more mature women in my life (yes…I'm talking about you mom and my amazing aunts)…you are invited to buy a camo scarf if you can't get your arms around the idea of wearing Hanky Pankys…. I completely understand. Just so you'll know, I believe this idea was divinely inspired, so I think God likes the idea of us wearing camo undies!

The truth is that I've seen Wade both physically and mentally grow stronger and stronger as he receives texts, emails and phone calls with prayers and support from our amazing network of family and friends.  Every little bit is helping him heal.  And… his sense of humor hasn't gone anywhere.  So, to all of the women in our lives, please join Cate and me in wearing some Battle Booty.  

Back to the he clear thought that came to mind on my run yesterday. It was that anyone who participates in Battle Booty or Battle Wear of any type should take a selfie wearing your gear.  OK… please don't take a picture with just your Battle Booty on… Keep your clothes on (although I'm sure Wade would love to see some Battle Booty, we're trying to run a primarily G-rated ship over here).  Just send him a selfie telling him you have your Battle Booty on! Here's his email: wgillham@gmail.com, and here's his cell phone for texts: 512 415-0329.

Below is the link to Camo Battle Booty if you would like to purchase them online:

http://shop.nordstrom.com/s/hanky-panky-hunter-regular-rise-thong/3840992?origin=keywordsearch-personalizedsort&contextualcategoryid=2375500&fashionColor=&resultback=601&cm_sp=personalizedsort-_-searchresults-_-1_2_C

http://shop.nordstrom.com/s/hanky-panky-hunter-boyshorts/3840550?origin=keywordsearch-personalizedsort&contextualcategoryid=2375500&fashionColor=&resultback=720&cm_sp=personalizedsort-_-searchresults-_-1_3_A

Love, Deb

Wade / Dad - We've got on our Battle Booty supporting you all the way!

Cate and Deb with Battle Booty.

MD Anderson - Part Deux (two)

We were supposed to go to MD Anderson this past week for a report on my CT scan. The MD Anderson CT machine has much better resolution than the Austin-based one. This is strange to me, given how new the Austin one seemed. But I will say that the MDA one has prettier lights, they spin faster, and the voice that tells you to "Take a breath. Hold it. Breathe normally." is much more human-like. The one here in Austin would remind you of that little robot in Buck Rogers from the late seventies. He only said like three things though: "Good idea, Buck." "Beedee beedee beedee." and "Look out, Buck." He was not as sophisticated as the CT machine here in Austin.

Here is that little Buck Rogers robot with my other favorite character, Wilma Deering.

So as I was saying, we didn't get to go to MD Anderson this week, and so there is really nothing to report from a health point of view. The news is that we did hear from MDA and will be heading down there this week. We will be finished with additional testing late Thursday night, and heading back on Friday AM. We will look to update the blog with results on Friday or that weekend depending on how things go. 

Thank you for your thoughts, prayers and cheers. We thrive on your positive vibes. 

Juice

I am living on juice these days. It's healthy. It tastes soooo good. It's soooo convenient with the new locations in West Lake. And it's soooo cheap. 

But this isn't about juice. Juice is power. Power is love. Thank you for the power. Thank you for the juice.

The love, support and caring that have come bubbling up through the placid surface that is our social network is astonishing. Friends I have enjoyed over the years as laughing beer-b-que buddies are showing up now with those same jokes and same smiles, but also with food.

It has been astonishing to see the number of people who have shown us love and caring these past few days. The notes and emails come daily. They are sincere and lovely and literally fill my energy bar with juice. I feel better having read them. Thank you for the notes. Thank you for the thoughts. Thank you for the prayers. Keep writing and praying or pausing to think of us. If the tables were to someday turn, I know my family would be there for you.

I have learned about ActionLove this week. It's when you put action behind your words of support. That action is everything from bringing a kid home to saying a prayer or thinking of us and letting us know. It's a simple text with a snapshot or a note when you have a minute.  

I hope that one day, for reasons other than cancer, I have a chance to ActionLove others. It's a wonderful skill and takes all forms--a note, a prayer at a stop-light, a text, or a friend, standing in the door with one of your precious kids after a play date or holding a juice with your name on it.

Thank you to all our friends. 

p.s. This isn't a request for juice in the literal sense. I have more than I could ever drink right here.

Shout out to MDJ. In it to win it.

Deb's take on MD Anderson - posted here http://wdcwb-family.blogspot.com/

Wade and I went to MD Anderson yesterday to meet with an oncologist  named Dr. Milind Javle who has a deep understanding of bile duct cancer.  He was very knowledgable and helped us understand better what we are facing. 

Wade's diagnosis of bile duct cancer was confirmed by Dr. Javle.  The type of tumor he has is called a Klatskins tumor and due to its complex nature, it often cannot be successfully biopsied.  It is one of the few cancers that is treated without a definitive diagnosis through a biopsy. 

They performed another CT Scan after our meeting with Dr. Javle so they can see more clearly the exact location of the tumor to determine the best treatment plan.  The scans at MD Anderson provide better detail than the scans we had done in Austin so this additional test will be extremely important.

Just like the doctors in Austin, Dr. Javle doesn't believe that the tumor is resectable (meaning it cannot be cut out) due to its location between the bile duct branches and blood vessels inside the liver.  It is close to important arteries and therefore removing it is too risky.  Since it cannot be removed, the best line of defense is to do a combination of chemo and radiation for 5 - 6 weeks.  He will then take a break from treatment to heal while they take more scans to see how he is responding.  Dr. Javle is going to meet with a team of oncologists and surgeons on Tuesday to discuss Wade's case and put together a successful plan forward.

The good news is that if they recommend the chemo / radiation approach, the treatment can be done in Austin and the chemo is in the form of a pill.  The radiation is daily but only takes 10 minutes a pop.  We'll learn more about this next week.  We are coming back to MD Anderson next Thursday to hear the team's final recommendation. 

As you can imagine, this was not the way we expected to end the summer and start the new school year.  We are still in a bit of shock.  I will tell you though, Wade is amazing.  He has faced all of this distressing news, unpleasant abdominal surgical procedures, hospital stays, multiple CT Scans and bloodwork with such bravery.  I knew he was a courageous person before last week but now I'm in awe.  Thank God for his sense of humor…he keeps us laughing and moving forward. 

Feel free to send him a message of support.  He has really appreciated all of your love and concern this past week.  His email is wgillham@gmail.com. 

Finally, thank you to all our friends and family that have dropped everything and helped take care of our family this past week.  We will be forever grateful for all you have done.  Cate, Will and Ben are doing well.  They are aware of Wade's situation and are ready to fight along side him.  Our family is a rock.

I'll leave you with a picture of the first thing we saw when we arrived at MD Anderson yesterday.  I liked this a lot…

MD Anderson and Houston – Wade’s thoughts

Everything is bigger, and worse, in Houston. No, that’s not fair. As Deb and I drove into the medical center that houses MD Anderson and other hospitals, we passed the cathedral where we were married and where Debra was christened “Debra, child of God”. The lawns all around are lush. The gardens look beautiful and well planned. The fountains cascade with crystal water. And the light rail (!!!!) runs quietly and swiftly past us on the tree-lined road. We will be returning to this place over the coming months to visit Dr. Milind Javle, a recognized national expert on bile duct cancer. I am so happy to have a beautiful environment to welcome us with museums and aquariums. We will find ways to make these visits about more than bile duct cancer.

(As an aside, I need a name for my bile duct cancer that gives it less respect. In doing some very limited research on the information super-highway, I discovered that it is quite a sarcastic little sob. Get this. Bile duct cancer is typically reserved for 1) ladies, 2) who are over 65, 3) live somewhat sedentary lives, 4) and are Asian. In case you don’t know, I am none of those. My little buddy is lodged in a young(ish), active(ish), healthy(ish), non-Asian(no -ish), man(no -ish). So what to call it? I am open to suggestions because my names for it thus far are not fit to print. For now, we’ll call it cockroach.)

So, cockroach, Deb and I visited Dr. Milind Javle yesterday here in beautiful Houston. I am so very grateful to the close loved ones who opened this door for us. Dr. Javle is among the Illuminati of cancer researchers. He is at the very top, and the pinnacle for bile duct cancer. It would be hard to think of a more qualified, knowledgeable doctor to counsel us. We would literally NEVER have gotten an appointment with him. But yesterday, he took extra rounds to come sit with Deb and me and answer our questions and share his knowledge with us. As we are finding with every passing hour, the generosity of our family and friends is beyond our ability to say thank you. But, Thank You.

The short form of our findings is that cockroach is living up to his character. He is not typically able to be sampled for tissue. So oncologists treat him with chemotherapy and radiation without ever actually getting a verified biopsy. This is a very rare tumor indeed for doctors, who are gun-shy from mal-practice threats, and yet shoot their patients with poison to kill something that may in fact not be what they think it is. Talk about liability. This is one reason that my Austin doctors were so hell-bent to get a sample. But the sad fact is that if they would have been successful, it might have jeopardized the scope of my treatments by allowing cockroach to spread within my liver and bile duct more effectively. We have yet to see if in fact cockroach was compromised or not, and therefore if my treatment options are still wide open. For another day and another set of keystrokes.

I won’t dwell on the discussion with Dr. Javle except to say that I am 1) not a lady, 2) not Asian, 3) not over 65, 4) not sedentary, and 5) ready to smash cockroach’s foul guts out on the floor.

One last moment of the day---After all the dust settled from CT scans and blood drawings and visits with experts, Debra and I went to Sparrow, a restaurant run by Monica Pope who is well-known in Houston. Debra worked for Monica as a young waitress back when I was in France and she was spending time in Houston prior to coming to see me, where I would strategically ask her to marry me. Debra and I had a beautiful dinner of avocados, scallops and snapper, with Monica’s special margaritas to soothe the day’s bumps and scrapes. The air was skin temperature. There were no mosquitos. There were no loud-talkers. And the company was delightful.

Deb at Sparrow. Yeoowza!

Wade at Sparrow. Drinking a Margie! Take that cockroach.

And there was a very funny dog named Fergus. Fergus is Irish, of course. He is literally the shape of a large loaf of bread with short legs and long, grey hair. He is exactly like Beau, my own dear friend, except with an Irish accent and fuzzy hair. Deb and I loved him.

Fergus at Sparrow, eating a free bone.

We finished the day with sleep, in a Heavenly Bed™ at the Westin Galleria, paid for by Papa and Gigi. We are so fortunate.

Telling Will and Ben

Will's new lacrosse helmet. I love it almost as much as he does. Ben is a little further down...

I am happy and feeling good today. Yesterday was a day of progress, as usual, and Deb and I knocked out a bunch of life's minutiae while spending time together too. Thank God for her work to keep us both busy.

And, so I don't forget, I got a wonderful CT scan using that hot dye that coursed through my vascular network like warm acid. It settled in my lower bowel … lovely to feel while I laid on a hard table with my arms held back above my head. "These things are necessary for me to get better." 

In the big machine, I pondered whether or not to go to MD Anderson before or after the endoscopic ultrasound. We are going before now since we are meeting Dr. Javle on Friday at 1 PM, the exact time we are supposed to get the endoscopic ultrasound. 

But the big news from yesterday is telling Will and Ben. 

Ben's new helmet and gear. 

We told Will first. He asked how long I would be sick the night before. I told him I would talk to him about it in the morning. We sat down in Deb's office, Cate joined, and we walked through the details we know. He was scared of losing me. So help me God, I will not be lost. 

Ben was next. He is so wonderfully trusting. He was scared too of losing me. In a way, part of the healing process is hearing that those closest to me are scared of losing me. That makes me feel special. 

We gave Ben and Will similar tools to the ones we gave Cate.

1) Dad is strong and mean, and cancer is going to be sad he ever came to visit.

2) Their trust and openness with us is what will make them and me better. Anything they feel is completely okay. There is no expectation that they must be "strong" for me. If they're worried, scared, angry, if they want to be with friends, if they want to hang alone in their rooms … whatever, it's all okay. 

3) He can ask himself if what he is doing is making him better. If not, move on.

4) God is supporting us, and them and they can always pray and talk to God.

5) They have a huge support network and anything they need is not far away at all.

Appointment w/ Dr. Fuller, August 20 -

Met with Dr. Fuller again today. He is the "easy-cowboy" doctor who does complicated cancer surgeries. He as a "good cop" to my other doctor. And today, again, he was as humble and approachable as previously. 

He confirmed the CT scan I had on August 19 was very good at imaging the tumor. It sits at the "bifurcation" of the bile duct into the liver, and surrounds the bile duct, the artery and the vein that all converge in that one spot. It's Dealer 21 twenty-one times in a row. It remains unresectable and unattainable for a biopsy. It's hiding and waiting. 

http://www.uchospitals.edu/images/nci/CDR0000659742.jpg


Dr. Fuller supported our ideas wholly to go to MD Anderson. He completely understood and supported the idea. We go on this Friday for five appointments. 

The Fantastic Flying Books of Mr. Morris Lessmore

August 18, 2014

We read The Fantastic Flying Books of Morris Lessmore last night. In the book, Morris has a diary in which he writes “of his joys and sorrows, of all he knew and everything he hoped for.” Surprisingly, I didn’t realize this would make me sad. It did, and I had to let Cate read some of the pages for me. It is a beautiful book as well, but somehow sad in its beauty rendered in black and white and sepia. Characters who read become color. Characters who lose reading or books become sepia or black and white.

After reading it, Will told me he lost his last tooth while at the Donnovan’s house. It was his left incisor. He brought it to me and I held it and was sad. The night ended with general peace after talking about how my sadness is partly due to my inability to focus on a diagnosis with determination. It makes me fumble along without direction as I vacillate between sadness, numbness, and anger. Cate was wonderful for me, talking through this intense emotion and supporting me through it.

Telling Cate - 8 Things to Remember

We told Cate tonight. She was so strong. Sad, sad, sad, but so strong. We wanted to tell her so that if she heard from another source, she would not be surprised. 

We told her the following list of things to keep in mind:

1) her daddy is mean when he needs to be and is going to fight this sob.
2) we have the means to pay for the right medicine
3) we have the network to open doors in MDA (Mac’s friend on the board and Karen’s friend, Dr. Blum, who funds this type of research, and Robyn’s friend Doug Ulman who runs LiveSTRONG)
4) we have all the best doctors, and access to even more
5) we have puppies to help us fight, and to soothe us when we need it – this is so important to me on so many levels
6) we have each other and we can talk to one another and support each other to be free, sad, scared, angry, worried, quiet, funny--whatever we need
7) we have God on our side, and we can talk to him when we need to
8) we have music to help us fight or grieve or whatever we are feeling

Hospital - Aug 18 AM

August 15, 2014, Friday

Today started pretty nicely. I woke up to Deb coming into my room at 5:30 AM. She had cleaned up from the day before and looked lovely. She was wearing jeans and a white linen shirt and her sandals. She sat beside me and fell asleep in the chair that is built for fat people. (It’s giant.) We snoozed and dozed until around 8:15 when the guys showed up to take me to the Radiologist for more biopsy samples.

That was a really bad experience. The guys were rough and I awoke when they were shoving the tube down my liver. Oh man did that hurt. I think they held my arms down while they shoved more anesthetic down me. I was saying, “Hold on…. Just let the anesthesia take hold!” The nurse manager came by and got a statement from me, in which I was very careful to say really nice things about the guys who were pleasant, and give her the facts on the ones that weren’t.

So they dug pieces of me out, little mouse bites of my bile duct where it’s constricted and then a scrubbadubdub of the same area to get some cells in general. This goes to the lab, and that technician gets going. Dr. Fuller came by again and we discussed it. I told him I wanted to hear from him regarding the prognosis, and not Dr. Hyena mouth.

To that point, I had a pretty lengthy break-down with my good friend Liz Powell this morning. She was here talking to Deb and me, Pres was behind my bed. As we were talking my realization of the irony of cancer treatment really settled in: the proscribed treatment won’t always cure you. Up to this point, I have pretty much gone under the knife, taken horrible pills, endured awful procedures because at the end of them, I would be cured.

Cancer is a little more nuanced. It’s a combination of things. And while this is obvious to the reader or casual observer, it’s a far more sobering realization for the person with cancer inside them. Do all these horrible things to your body, and you might live. Don’t do them, and you’ll die. This is a hard trade-off.

What really aches is that the trade-off I am making is my family, my wife, my house, my loved ones… all in juxtaposition against this disease. If I don’t fight, then all those things go away from me. And I am all alone. I am solitary in whatever plain I would then exist. This is not consoling for me. There is no one beyond the grave I want to see more than my family here on this world. I want to remain here. This was my realization today… so abstract and yet so concrete. So concrete.

Liz held my left hand, Deb my left knee, and Pres had his hand resting on my head. After a while it got hot. I had to move it. Pres loves me so much and I deeply appreciate him coming and taking care of my precious ones. He is a good big brother.

What gave us some comic relief was the poor house keeper who came in the room and didn't even pay us any mind---just kept right on mopping and emptying and making noise while four adults sat on the bed weeping. We all said something, everyone of us. But ultimately, mr anger got the best of me and my sadness morphed to hulkish rage, "Just go away" I said and looked at this poor person with what must have been a pretty clear visual message. She left. 

We looked back on it with some humor later, but here was the learning for me: I immediately felt bad and expressed it. Liz helped me get over it without the anger I generally feel from my upbringing. It was refreshing. The anger was dispelled and I was able to return to peace and presence. 

For me, I was able to ultimately boil down Liz's message to this: Is this helping me get better? It is a good comment for me to keep in mind for the moment since, at the moment, I don’t have anything to really rally against. I am preparing for the unknown race. I have a fight ahead of me, but my enemy is not known. So, when I face emotions or situations, it is beneficial to me and to those around me when we ask, “Is this helping me get better?” Not surprisingly, anger at others doesn’t help much. What is a little surprising is that with this simple question to yourself---at least for now---the anger dissipates quickly leaving room for peace.

Hospital - Finding Out

August 13, 2014, Seton Hospital, Austin Texas

Branches and roots, each as over-come as the other, one in the liver covering both lobes thus making it impossible to cut out, and the other in the pancreas--“Not as serious”--according to the boot-wearing doctor with the easy demeanor and disarming smile. His student, Melinda, at the foot of the bed would be telling me if choledochal cysts are genetic in the morning. “Thanks, because I have three children.” (FYI these cysts can exist for years without being noticed and can live on many different organs. I had one on my gall bladder too. Doctors cut it out when I was 7.)

The morning it all began.
My socks were made for giant fatties.

The severity of my particular tumor conveys with the inability to “resect” it, or cut it out. Can’t do that because I have to have some part of my liver to live and the branches are well matured through both left and right sides. We have to shoot it and me full of chemotherapy to try to shrink it first. Then we can consider our next steps. 

Deb and I have been waiting all day, or actually two days, for this information. It keeps growing darker. The first glimpse was just a growth outside the duodenum that was causing a stricture. Then the famous line this morning from Dr. Binh Pham, “No, I am not 98% sure this is cancer. I am more sure than that.” His biopsy turned out to be false, as in not cancer. 

But five days ago, Friday August 8, I had an MRI done on my abdomen. Dr. Rob Fuller looked at it today. His suspicion is a double-sided dose of devil’s breath. He won’t know for sure until tomorrow or the day after, or the day after that. But it’s apparently a pretty damning image he’s looking at. By the way, it’s the first time I have worn my wedding ring in an MRI machine. It hopped and buzzed on my thin finger in rhythm with each magnetic pulse.

Tomorrow, we go back under for the radiologist to do what they should have done the first time, which is get a sample of the suspicious material. Then we send the samples to a lab somewhere, and there a very official-looking technician will run some dyes and tests and pronounce, “carcinoma.” And my life will have irrevocably changed in some faraway place that the technician doesn’t even consider.

What will this hold for me?  To be sure, some terrible nights. To be sure, some terrible days. I wonder about the other people around me at the clinic. What will they be like? Will they be stalwart and brave, or sallow and defeated? Will they be like Lance Armstrong, kicking cancer’s ass? Or like a cow led walking to suspicions of doom?

I will … be … who knows? I will be stalwart for sure. I will be liked by my friendly tormentors. I will make them laugh. I will know their names, and if I remember to do it, I will write their kids’ names in my phone and so I will remember those too. I really hope they’re likable. I need to remember to remember that I will see them a lot, and so avoid the potential to say something mean to them.