Sphincters I Have Known and Lost

“You want to hear about all the times I’ve had tubes shoved up my penis?”

There’s a sentence I never thought I would ever speak or write to other people.

Until I got cancer.

When I was growing up my family never sat around the dinner table talking about death, politics, family secrets, our dates, personal insecurities, or anything serious, for that matter. There was never any talk of how Grandma died or whatever happened to Aunt Helen’s first husband—or for that matter, the fact that Aunt Helen had had a first husband. There was certainly never any mention of the fact that in 1960, my older cousin Lucy had converted from Judaism to Catholicism, married a Black man, and moved with him back to his home in Kenya. In short, personal information, much less anything that might be considered embarrassing, was not for public consumption, at least in my family.

When I became a parent, I carried these practices into my own family. My kids learned early to avoid talk—at least with me—about topics that might make me squirmy. Even when I visited my daughter and her husband in Chicago after the birth of their first baby, she assured me that the only reason that her husband was sleeping in the bedroom with her was so that I could sleep on the couch in the living room, “Where he usually sleeps, of course,” she said.

As I said, that’s who I was until I got cancer. Bladder cancer.

For some people, cancer defines the line of demarcation between feeling immortal and accepting their mortality. For some, it defines the line between barely noticing the daily bodily pains and twinges and the assumption that each of those twinges is the first sign of The Cancer That’s Going to Kill Me. For me, cancer redefined the line between what I considered private and what I was willing to make public, that willingness to disclose personal details, that assumption that random strangers and acquaintances want to know the unpleasant and intimate details of my life. There were other costs of having had cancer, of course: physical, emotional, and financial. There was a new and continuing awareness of my mortality. There was some physical discomfort along the way. But that was the main one, forgetting that there’s a line that separates the personal details I’m willing to make public and those I’m not.

I’ve taken enough psychology and interpersonal communication courses to know all about the trust-risk cycle, that you only disclose as much information as you think is safe, that will not cause rejection, embarrassment, or humiliation, and that as relationships develop, you’re gradually willing to “risk” more, to disclose more personal information as you develop more trust in the other person.

And yet, I just ignored all that and shared with you, a total stranger, the fact that I’ve had countless tubes shoved up my penis.

I was driving home to Baltimore from Hershey, Pennsylvania, where I’d had dinner with my son Christopher. He was working for a company that gives hotels their ratings, was under cover reviewing a resort hotel, and needed a “dinner companion” to help not call attention to himself. After discussing the meal (presentation and taste were excellent, as was the waitstaff’s attentiveness, although the tablecloth had a stain on it, and the flowers at the maître d’s station were a bit past their prime, as was the maître d’), Christopher went back to his room to evaluate the turn-down service, and I left for the hour-and-a-half drive back to Baltimore.

At some point I needed a bathroom stop. Urgently. Much more urgently than usual. I pulled into an old Texaco station off I-83 just south of the Pennsylvania line in Maryland, raced into the very dirty, smelly restroom, peed out a blood clot the size of Detroit, and realized that there was probably something very, very wrong.

Three days later, I screwed my courage to the wall and made myself tell my primary care doctor about peeing out that clot. Normally calm and unflappable, this doctor who’d been my physician for 20 years and whose standard response to any symptom I had was telling me to wait a few days to see if it got better on its own picked up his phone before I finished talking and made an appointment for me the next day with a urologist.

“You have bladder cancer,” the urologist said, after looking at the inside of my bladder through a tube his tech had shoved up my penis.

These are the things that do it, I thought, the invasions of your personal space, the invasions of your body by total strangers. I know that women have dealt with this forever, gynecological exams by older men, for example, but it wasn’t something I’d had to think about until I’d had a tube shoved up my penis.

“You’re going to die,” the urologist continued, bedside manner being his weak suit, “but it won’t be from this.” He went on to tell me not only that what I had was the most common kind of bladder cancer—information that was simultaneously reassuring and not—and that it was Stage T-a, which meant that it was confined to the bladder lining (the epithelium) but had not yet moved into the muscle of the bladder. The good news, he said, was that it was slow-growing and easily treatable; the bad news was that it was likely to recur.

A week later, I was back in the outpatient procedure suite of his office to have the tumor scraped off by instruments that the urologist manipulated through an even bigger tube that one of his techs shoved up my penis. “That’s what we’ll do first,” Jaz said. Everyone in the office called my urologist “Jaz,” I assumed because it was a shortened version of his last name, but maybe (I found out later) because he was also a jazz pianist in his spare time. “We’ll scrape it off and send you home with a Foley catheter,” he said.

I immediately flashed to Foley artists, the sound effects people who walk and run in Foley Pits to create movie and television characters’ footsteps: high heels clicking on a tile floor, Nikes running down a sticky asphalt alley on a hot summer night. Maybe in addition to the Foley Box, I thought, Jack Foley, the sound effects technician in the early days of talking films after whom Foley artists and Foley pits are named, had also invented the Foley Catheter, used to recreate screams of pain and terror. In fact, the Foley catheter, a device for draining urine, blood, and other disgusting fluids from your bladder when it’s unable to do that on its own, was named for Frederic Foley who designed the contraption in 1929.

“Does that mean I won’t be able to go out while I have the catheter in?” I asked.

“No, do whatever you want,” the doctor said. “You just need to wear sweats or some other kind of loose-fitting pants to accommodate the urine-collecting bag that’ll be strapped to your leg. After two or three days,” he said, “when you don’t see any blood in your urine, that’ll mean that your bladder’s healed enough that you can remove the catheter and collection bag.”

I wasn’t a sweat pants kind of guy. I wasn’t athletic. I grew up in the 60s. I wore khakis, button-down shirts, and ties at work and jeans the rest of the time.

“Why are you wearing sweats?” my friends and colleagues asked me that first time. What should I say? Should I lie? But what would the lie be? I’m a terrible liar, anyway.

“I had a little medical thing Friday,” I said, “and I have to wear loose-fitting pants for a few days.”

By the third time I’d been scoped and scraped, though, it was just part of who I was. “I had a tumor scraped off the inside of my bladder, and I have to wear a pee bag for a few days until it’s healed.” I noticed that people gave me a little extra space then, not wanting to risk bumping my leg and causing who-knows-what to happen.

That was the beginning of the treatment, scraping the cancer cells out of my bladder. The second phase, which started a week or so after that, was trying to keep them from returning. That consisted of periodically squirting BCG into my bladder. BCG stands for “Bacillus Calmette Guerin,” which is a classy way of saying Bovine Tuberculosis, which someone figured out can kill bladder cancer cells. The good news about BCG is that unlike regular chemo, it’s bladder-specific rather than systemic, which means that its side effects don’t affect your other body parts: you don’t get nausea or hair loss, for example. The bad news is that there are bladder-specific side effects, mainly irritation, inflammation, scarring, a craving for alfalfa, and most noticeably, spasms.

So, what’s wrong with a few bladder spasms? Nothing, except that every time your bladder spazzes, it contracts and makes you have to pee. And as the treatments went on and my bladder got more irritated (“it looks like a bomb went off in there!” Jaz said one day after scoping me out during one of my regular office visits, making small talk and trying unsuccessfully to reassure me about something or other), the spasms became more frequent.

I carried an empty milk jug in the car to pee into if I couldn’t make it to a gas station in time. On one trip, I drove with my fly open, peeing fairly regularly into my milk jug, hoping that traffic would slow down and at the same time hoping that someone in an SUV or truck wouldn’t pull up next to me and look down through my car’s window to see what I was doing. I had my classes moved to rooms closer to the men’s room, so I could get there and back as quickly as possible, and I restructured my classes so that I could always turn on a short video or have them discuss something when I suddenly had to run out for a minute. I got so tired of calling attention to myself in meetings by so often having to get up and leave that I started just standing by the door so my constant (sometimes every two or three minutes) exits and reentries weren’t as disruptive.

“Are you all right?” people asked. “You’re running out to the bathroom an awful lot.”

“Yeah, sorry about that,” I said at first, but that response seemed dismissive, so after a while, I just started telling the matter-of-fact truth to whomever asked (well, except for my students): “I’ve been getting this bovine tuberculosis bacteria squirted into my bladder through tubes that get shoved up my penis, and the doctor says it’s working, but it’s wrecked the inside of my bladder and caused all kinds of random spasms that are making me virtually incontinent, so right now, I have to run out and pee sometimes every two or three minutes and that’s just for now, by tomorrow, who knows, I might be wearing Depends.” Now there’s a way to get people to stop asking questions!

Before I had cancer, I had never understood why people on Facebook thought anyone would care that they’d “just eaten corn flakes for breakfast for the third day in a row!” or “hated that dress that Kim Kardashian is wearing on ET right now.” Once my various symptoms, treatments, and related indignities became part of my new normal, though, everything was different. It’s a slippery slope, I realized, from that kind of inane online sharing to the breaking down of any kind of barrier between what’s in your head and what’s in the public domain. The dictum “some things are better left unsaid” suddenly seemed as quaint and outdated as the post COVID-19 view of the days when people went to crowded bars and ate snacks out of community bowls.

After two years of scopes, scrapes, BCG treatments, trying to live a normal life before the next recurrence, and then repeating the process, my cancer came back yet again, this time in a more advanced stage, this time in the muscle itself, at which point I met with the Bladder King at Johns Hopkins Hospital. You can only imagine my surprise when instead of recommending the Whopper With Cheese Meal, he recommended removing my bladder entirely. The standard procedure was to replace it with an external bag, but since I was relatively young and (otherwise) relatively healthy, he suggested Plan-B, a much newer procedure, in which my bladder would be replaced with a piece of my intestine. They’d sew one end to my ureter and the other to my urethra, and uroila! It would work just like my old bladder.

What’s not to like, I thought. What could possibly go wrong, I thought, shuddering at the possibilities.

The plan going in (and I mean that literally as well as metaphorically) was that they’d cut me open, take out my bladder, and do quickie biopsies of the surrounding lymph nodes, etc. If everything looked clean, they’d cut a section out of my intestine, build me a new bladder, reconnect everything, sew me up, and staple me shut. If they did see any complicating factors once they got in, they’d go back to Plan-A and give me an external bag. While I didn’t relish the thought of wearing a bag for the rest of my life, the alternative seemed to be not having a life at all, so I acquiesced.

But before the surgery there was paperwork. My bladder cancer was my first serious encounter with the American healthcare bureaucracy that seems to be about protecting itself against lawsuits and lack of payment as much as (or more so than) about providing medical care. Here’s an example:

This consent provides us with your permission to perform reasonable and necessary medical examinations, testing and treatment. By signing below, you are indicating that (1) you intend that this consent is continuing in nature even after a specific diagnosis has been made and treatment recommended; and (2) you consent to treatment at this office or any other satellite office under common ownership. The consent will remain fully effective until it is revoked in writing. You have the right at any time to discontinue services.

Who knew that an unintended consequence of bladder cancer treatment would be carpal tunnel syndrome from signing so many mind-numbing forms! 

In addition to the liability forms, there were also forms that allowed them to share information about my condition. Ironically, at the same time my own personal disclosure barriers were breaking down, the institutional barriers were increasing. HIPAA, the Health Insurance Portability and Accountability Act, is the federal law that protects patients’ rights, including their privacy, to the point where nobody’s allowed to tell nobody nothin’, at least not without all kinds of signed waiver forms.

So, at the same time I was happily telling anyone who’d listen about peeing out gigantic blood clots and being virtually incontinent and having tubes shoved up my penis, the surgeon and other hospital personnel weren’t allowed to tell my wife and children whether I was alive or dead unless I’d signed countless waivers.

The surgery did, in fact, go according to plan. It lasted four-and-a-half hours, all of which I slept through, fortunately, and required four units of blood. They found nothing unexpected, built me a new bladder, and sent me on my way. “Sent me on my way” came after a week in the hospital, three weeks with a catheter, and the warning that I could never scuba dive.

They estimated that it would take me about six weeks to recover, not counting the subsequent incontinence, which they said might last a year or more before my muscles and nerves learned how to control this new chunk of plumbing. It’s similar, apparently, to the way a stroke victim has to relearn how to control a part of their body that used to control itself automatically.

OK, so let’s talk incontinence. I was somewhat leaky once the catheter came out, but within a short time was no longer peeing randomly all over the house, and within a couple weeks after that, my wife had me almost completely paper-trained. Within another couple weeks, I’d graduated (at least during the day) from Depends to big boy pants.

Once I was mobile and driving and my incision was healing reasonably well, it was time for physical therapy, two kinds of physical therapy. The first, as you might expect, was the kind that helps you rebuild your stamina and muscles after not doing anything for several weeks. The other was specifically about pelvic floor rehab to work on muscle and sphincter control to regain continence. Here’s an example of the Pee-T’s instructions to me:

Try to “squeeze” or contract your rectum as though you are trying not to “pass gas” in a public place. While “holding” this contraction, try to imagine you are “raising” or “lifting” your scrotum and testicles. Continue this contraction for a count of 10 seconds, then release and rest your entire pelvic floor for 10 seconds. Do this for 10 repetitions. 

I imagined sitting at the family dinner table as a child and watching my parents’ horrified expressions as our dinner guest said things like “rectum,” “pass gas,” “raising or lifting one’s scrotum and testicles.” And yet here I am, years later, putting all this out there for my children and grandchildren and old girlfriends to read.

My new bladder works really well, don’t get me wrong, but not perfectly. Miraculously, that piece of intestine, once it became my bladder, started acting like a bladder. It learned to expand and contract, for example. But hard as it tried, it couldn’t completely stop being intestine. For example, intestines are lined with mucous membrane, just like noses and mouths and throats. So, when I first started using it, the first thing I peed out was a little mucous plug that had collected. I still do sometimes, especially if I haven’t peed for a while, but it’s no big deal, except occasionally when I have to pee into a cup for my annual physical, and I hand it to the lab tech, and she looks at it and says, “Sir, do you know there’s mucous in your urine?” and I say, “No, but if you hum a few bars, maybe—” at which point she cocks her head, dog-like, and walks away.

Another difference between a natural bladder and my intestinal bladder is that natural bladder tissue has nerves in it, so, for example, you know when you have to go. Intestinal tissue doesn’t have nerves (who knew!), so I need to rely on one of three methods to tell me it’s time to pee:

First: the clock. I try to pee every four hours or so, even though I don’t feel the need to.

Second: various abdominal organs. If I wait too long, my bladder inflates and starts pushing against something or other that in turn, gives me a stomach ache or whatever kind of ache it might be. It made me more sympathetic toward pregnant women.

Third: leaking. You know how when you really have to go, you squeeze that little sphincter that keeps the urine from squirting out of your bladder and through your urethra? Or—if you’re a boy—you squeeze that little sphincter in your penis that keeps you from wetting your pants and those around you? Men usually have three safety valves, so to speak, between them and incontinence: those two sphincters and also the prostate that pushes against the urethra and helps control the flow of urine. My new bladder, god love it, didn’t come with a sphincter. And when they took out my bladder, they also took out my prostate. (“Oh, did we forget to tell you we were going to do that? Sorry.”) The result is that instead of three safety valves between me and incontinence, I now only have one. And on rare occasions, especially at night when I’m not paying attention and my muscles are relaxed, not even that one works 100-percent.

Back when I was studying media effects research, I read a lot of scholarly articles that concluded that people who watched a lot of TV violence or consumed a lot of pornography or listened to a lot of profanity were less offended or otherwise affected by those behaviors than people who didn’t experience that volume of those observed behaviors. Repeated exposure tended to break down long-held beliefs, attitudes, and social barriers. In my case, it wasn’t violence or porn. It was two things: adapting to living in the new culture of American medicine that treats bodies clinically rather than personally; and then blurring the lines between living in that world and my “normal” world where certain boundaries still existed between what information and what level of detail we shared with “the public” and what we didn’t.

Between the cystoscopes (the device through which they look at the inside of your bladder, scrape out cancer cells, and apply chemicals and other medications) and the catheters, I figure I’ve had tubes shoved up my penis 35 or so times.

And erectile dysfunction? Don’t get me started!



Image: “Tunneling” by Alan Levine, licensed under CC 2.0


Jon Shorr
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