Part 30. Like a Rolling Stoma
God bless nurses. I don’t know how I would have survived my months with the ostomy bag without the kindness and good humor of a particular nurse who came to my home to look after me. She was so concerned about me that she spent extra time with me off the clock. I’m not going to fully identify her because I wouldn’t want to get her into trouble. (And, generally speaking, if you want to get yourself in trouble at work, do more than the minimum.)
I could not seem to get the knack of making the adhesive attachment of my ostomy bag to my belly. The contours of my gut created a ripple effect like erosion in Bryce Canyon. And my hairy and sometimes moist — especially on humid late-spring days — skin made it hard to get a good, clean stick.
And there were the vagaries of different brands of ostomy bags. The nurses had sent me home with samples of several different brands and the one that seemed to work best — the best out of many loathsome options — was manufactured by a company called Hollister. Once I made my brand selection, I called the company and set up regular home delivery.
How pathetic I had become: I used to get boxes of books and CDs from Amazon. Now I eagerly awaited the arrival of boxes of bags for me to fill with shit then dispose. So, I was paying for something I was going to befoul and throw away. The cheapskate in me was appalled.
I might just as well been burning my money — or asking Blue Cross Blue Shield to burn money.
In the dream world — in the Hollister brochures stuffed in with the supplies that showed young people much too attractive to have ass cancer — people looked absolutely delighted to walk around carrying bags of shit on their bellies. Hey, look at me! Doesn’t this ostomy bag look bitchin’ with my bikini?
And in that dream world, the bag was reusable, not a one-and-done. I was going through those things like Kleenex tissues at a cocaine convention.
And then Elaine came along. She was my second home-duty nurse.
The first one, Marjorie, showed up my first day home from the hospital, told me the hospital nurses had taught me everything wrong to do, then sternly tell me how to do it her way.
She was emphatic and also confident. I thought: Okay, I can take Frau Blucher; I can deal with the Teutonic my-way-or-the-autobahn route. Heck, I might even get to like it.
But when I had my next scheduled home visit, Marjorie wasn’t available. Perhaps she had to groom livestock. In any case, my new nurse was Elaine.
When she knocked, I yelled, “Come in! I’m upstairs!” She came bounding into the room like Tigger. Her hair was a helmet of tight curls and she betrayed the manner of a gym teacher or camp counselor — upbeat, positive, determined that everything was going to be all right. I kept two or three extra sheets on my side of the bed, kind of like drop cloths, in case of accidents. I was spread out on one of them, wearing a T-shirt and shorts, my ostomy bag on my abdomen, awaiting inspection.
Elaine came with her bag of tricks — ostomy supplies, of course, but lots of other things in an old-fashioned doctor’s bag — and sat down on the edge of the bed and asked me how I was doing.
“I’m depressed,” I said. “I can’t seem to get this right. I don’t think I’ll ever get it right.”
“You will,” she nodded, patting me on my forearm. “You will. It just takes a while.”
“It’s been a couple weeks, though,” I said. “I was home for a miserable week after my surgery then I had to go back into the hospital again — for another week.”
“What was that all about?”
“Dehydration. And that was the worst week in my life. And the nurses on that floor didn’t deal much with ostomies, so it wasn’t like I got to practice my bagging skills.”
“We’re going to fix you right up,” the ever-jubilant Elaine said. She withdrew shears from her bag. “I’ve brought you more supplies. You need good shears, like these. The secret is in the way you cut the hole to fit around your stoma.”
The stoma, in case you forgot, is that angry red nipple thing sticking out of my gut — the piece of intestine my surgeon pulled through my belly. My shit came out through a small opening he’d cut in the intestine. Theoretically, this shit would neatly deposit itself in the bag. Theoretically. It hadn’t worked well in practice. But I began to think that with Elaine and her relentless optimism on my side, the tide might be turning.
It took a while. Elaine was supposed to visit three times a week. But she soon deduced that my morale was below sea level, and that I felt inept and alone. When I wasn’t alone, I was surrounded by four children. I certainly wasn’t going to ask them for help. If I was indeed heading off the mortal coil, that was not the sort of memory I wanted to leave behind with the kids: Oh, I miss Dad so much. Remember how we used to help him empty his bag of shit?
Elaine squeezed in five visits a week — often swinging by after her supposed last appointment of the day elsewhere.
I’d long since gotten over my shyness about my body. I felt like bursting out in a show tune when she’d walk in for her initial exam: Hey! Look me over!
I’ve never been inordinately good-looking so I had no vanity and had gotten over my shame and embarrassment. These nurses were professionals — see one Mister Happy, you’ve seen them all. Plus, I’d never regarded my body as a temple, but more like a den of iniquity.
Elaine had me experiment with cutting the attachment hole — the thing that fit around my stoma — and saving the measurements, so I had a variety of templates to work from. She had me keep records of how things worked with Template A, Template B and Template C. Which one leaked the least … better yet, which one didn’t leak at all.
When we figured out that B was best, we used that as our model.
She also taught me how to prepare my skin for the adhesive attachment. Too much powder and the thing wouldn’t stick. Alcohol would clean and dry the skin but it too could interfere with the attachment.
She spent most of her visit leaning over me while I lay on my drop cloth in bed and she examined the stoma and the surrounding skin. The belly around the stoma began to take on the texture of a Michelin Pilot Super Sport. It was tough, like gristle.
Occasionally, I’d erupt like Mount Vesuvius and feel a tsunami of embarrassment.
“Uh oh!” I’d yell. “Excrement alert!”
And Elaine was ready with her paper towels and a squeegee bottle.
“I’m so sorry,” I’d say. “I didn’t know that was going to happen.”
“Oh hush,” she’d say. “No big deal.”
I was reminded of Elena, the nurse who dealt with Devil’s Tower my first night in the hospital eight months before, when all this cancer stuff was becoming apparent. She said something similar.
No big deal.
Some of them are superhuman.
It’s a pretty awesome person who would help someone with a problem like this.
Elaine was one of those fine people who chose to spend her life helping others.
After Elaine, Christian Corwin, my cancer surgeon, was a constant presence in my care. He texted every few days and we even ran into each other on the baseball field one day.
It’s a joke I like to tell: Sometimes, I feel as if I live in a Norman Rockwell painting. This town is rosy-cheeked wholesome and we even have milkmen here. Every spring, all the townspeople gather for the annual baseball parade. We meet on the Common and then, with the high school’s marching band, we walk to the baseball field, where we raise the American flag, sing the national anthem, then draw straws and stone to death the person with the shortest straw.
Okay, so we don’t really do that.
But it is a small town with its traditions. This year, so soon after becoming a Brother of the Bag, I could not participate in the parade and Doctorove ahead to the ball field and awaited the uniformed players, the marching band and the crowned heads of the South Shore. I saw Corwin standing in the crowd and hobbled over. I had three sons in the town league. His oldest child was just starting out.
“How you doing?” he asked.
I adopted a conspiratorial tone, lowering my voice. “Pretty good, Bwana, considering I am walking around carrying a bag of shit.”
“Look around,” he nodded. “You’re probably not alone.”
For the first time, it occurred to me: maybe I’m not; maybe lots of people are going through this.
I didn’t want to take up his time during the pre-game ritual and stoning ceremony, but I did offer to insert a camera in my pants to provide him live-streaming of my stool. “The output of my stoma could fill TD Garden,” I told him.
“Can you just give me the highlights on DVD?” he asked. I’d always struggled to make the best of bad situations. Often, I succeeded.
Chemotherapy had been terrible and debilitating. It was like being drunk without the pleasure of drinking. I was so fatigued I found myself thinking about picking something off the floor for two hours before finally doing it. But on the plus side: I finally caught up on the sleep I’d missed back in the 1970s. So I began trying to find the bright side of walking around with a bag of shit:
Life is, in many ways, so much more efficient when we shit out of our stomachs.
When the bag is full it inflates my crotch and makes me look like I’ve got an impressive set of balls.
The bag may take the pleasure out of shitting, but it also resolves the mystery of the act.
If I were more scientifically inclined, I might’ve made a study of the variations in what I euphemistically began calling my ‘output.’ At times, the stoma produced something that looked like brown strawberry preserves, rich in seeds. Other times, while letting the stoma air out, I’d apply pressure to squeeze out as much as a could. Once, an undigested mushroom, the size of a quarter, came through the slice in my intestine. Another time, I found a whole, undigested cucumber wedge on my belly. One time, I thought the output resembled jellied gravy.
Sometimes, the aroma was pungent. I thought of describing it in terms a food snob might use: “It has the delicate rot of fermented red wine mixed with essence of decomposing squirrel . . . .”
I was spending a lot of time flat on my back, listening to the boys outside playing their endless game of baseball. The game seemed like my one connection to life. I drove the boys to practice and sat in the stands during their games. My beloved daughter Mary came to visit from Chicago and sat with me during a game. But when I tried to Drive her around Boston I had to turn around because my bag began leaking all over my pants while I was driving.
Mary never blinked an eye, God bless her. “Let’s just get you home,” she said. “I’ll see Boston next time.”
Seeing such strange things emanate from my gut affected my appetite. Though I no longer had daily radiation, I was still instructed to maintain my weight, even though I had little interest in eating. One morning I woke up to find what looked like mashed potatoes and gravy in my bag. I had a rotten taste in my mouth all day.
But I found it hard to look on the bright side when it came to my mother. I’d talk to her a couple of times a week and keep my secret.
“When are you coming to see me?” she asked.
“One of these days,” I’d tell her, gagging on the lie. I couldn’t tell her I was sick because she would worry at the time when her worries most needed to cease.
But I wondered: does she think I don’t want to see her?
The biggest lie I told her was that I was busy at work. But I was nearing the six-month point of my medical leave. My sterling colleagues — principally Mary Chapman, the department administrator, and Professor Susan Walker, who’d been doing my job for me — had kept me out of the loop. Lots of stuff was going on and they shielded me from all of it.
But one day the phone rang. It was my dean, gently urging me to return to work.
I was pretty far along with my book and would certainly welcome the idea of being back in the office again. But I had a litany of worries:
Will I be able to function on my commute-by-train?
What happens if I have one of my accidents on the train?
How will I navigate the streets of Boston while carrying a bag of shit?
I was about to find out.