20. Adjustment

I thought of titling this blog post "recovery." And there was definitely a great amount of that in the fall and winter of 2011-12. For instance, for the first few months after surgery, I would go to physical therapy twice each week. There, two terrific therapists, Dr. Mike Kecman and his assistant Christine, worked with me to rebuild my legs and arms, whose muscles had been wiped out by all the trauma to my body.

I also went to Dr. Ditaranto's office each week, where the nurses checked the therapeutic level of blood thinners designed to prevent another embolism. And then there was the general healing of body parts that had been ripped open, rearranged and who knows what else.

But when I think about this period, it really was one of adjustment. Adjustment to a body that had been weakened by cancer, chemotherapy and surgeries. Adjustment to a new type of bladder. Adjustment to a new nighttime ritual. Adjustment to intestines that were now shorter and rearranged. Adjustment to not having a prostate; I always wondered what that thing did.

The biggest adjustment, of course, was this new thing called a neobladder. Now, I'm discussing urology, which can quickly get a bit too, um, specific. So let me try to describe the neo without grossing you out.

To refresh your memory, a neobladder is actually a section of the small intestine that the surgeon removes, formulates into a receptacle, and hooks up to the ureters coming from the kidneys and the urethra connecting to the urinary tract. It's about the size of your fist -- maybe a little bigger -- and kinda works like a normal bladder. For instance, it stores bodily fluids coming from the kidneys, stretches a bit when it's filled, and is voided when you squeeze certain muscles.

How is it different? Think about this way. When you use the restroom, you make a modest effort and fluids quickly leave your body. It's an easy function because the bladder has a muscle structure built right into it, which you engage without really thinking about it.

A neobladder, on the other hand, has no such muscle structure. To void, I engage abdominal muscles to squeeze the neo. There's a technique to all this, which Dr. Shenk taught me. Fluids leave the body more slowly, however, so I have to engage the abs a couple dozen times or so.

That doesn't sound so bad, does it? Well, there's a catch. A big one. To help pass food through the body, the small intestine produces mucus that helps break down food groups. The neobladder does the same thing. It thinks that it's still part of the small intenstine. Maybe it suffers from separation anxiety.

Problem is, the bladder is no place for mucus. Why? Mucus blocks bodily fluids from passing through the narrow canal that connects the bladder to the urinary tract. When blockages occur, you have a problem. Fluids cannot leave your body. Instead, the only way to void the bladder is by using a catheter. Moreover, the muscus must be removed, which is done by irrigating the bladder with sterile water through a syringe attached to the catheter.

When I first thought about the prospect of using a catheter, I thought, "Ick! I'm not doing that!" Kinda reminded me of the time before my first son was born, when I confronted the prospect of changing diapers; not real sure I could do that. But much like with diapers, I got past the initial ickiness of catheters and adjusted. Okay, it's not something I seek out to do. But at least I can do it when I need to.

And that's the important thing. Because if the bladder is not fully emptied, bacteria can form and infect surrounding areas. Indeed, when I was in the hospital, I was visited by another neo patient who was there due to kidney infections.

Now, you might be thinking, "Well, of course you'd want the bladder empty." But that's not an easy thing for people with neos. We don't have the nerves that tell a normal person, "hey, it's time to go" or "we're done now." I met other patients who told me that they thought their bladders were empty when they really had hundreds of cc's in them. Catheters, for all their trouble, give you a more accurate read.

So I tried out a variety of those long tubes, ordered a bunch of ones I thought worked best, and started taking them wherever I went. I would say this was kinda like shopping for clothes, but we're in whole different world here.

Of course, you can't just walk around with these things in the open. There's a certain delicacy I had to achieve in coping with changes to the plumbing system. So I bought a modern, leather, sling-over-the-shoulder bag designed for iPads and laptops, which I would carry everywhere along with my iPad, wallet, phone and keys. I might need catheters and the accompanying utensils, I thought, but at least I can look stylish doing so! Ah, vanity.

Early on, the neo presented a number of difficulties. The neo isn't big enough to contain a normal bladder's worth of fluids; it takes a while for the neo to stretch out. So I had to void every couple hours, including nights. That pretty much did in any hopes of getting past the insomnia caused by chemotherapy and finally having uninterrupted sleep. Even after my break-in period, bladder control (or lack thereof) prevented a regular sleep pattern. As any new parent can tell you, getting up every couple hours does a number on your body clock.

The biggest problem, though, was an unexpected complication caused by the use of blood thinners to prevent another embolism. In short, using catheters created trauma and inflamation; trauma and inflamation inhibitted my ability to void; but because of the blood thinners, I couldn't take anti-inflamatories to address the situation. Result: more cathing.

At my next exam, Dr. Shenk found more obstructions, my neo was "a muscus production factory" -- must be a technical term -- and the openings to my ureters were healing in a constricted manner.

To solve for all this, Dr. Shenk wanted to remove the obstructions, see if he could close the production factory, and open up the ureter openings. In other words, I needed more surgery. And Schenk explained that I might need this kind of housecleaning surgery every so often.

Okay, not a big deal, I told myself. After all, the last time I went under the knife, I feared what might happen. Instead, this one would be a simple clearn-up operation and dramatically improve my condition. What could go wrong with that?

By now, you should realize that's a really stupid question.

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