Sadly, the Twobe is not gone

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

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

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

Or it's just a fluke.


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

Take Twobe - The tube revisited

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Update from Houston - Steak Anyone?

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

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

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

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

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

January 7th, 1995 – January 7th, 2015

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

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

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

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

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

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

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

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

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

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

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

Long may we run….