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.
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.
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.
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