DOGGED by Marty Kingsbury

In my 71 years of life, I’ve known lots of pain: scrapes and stitches and broken bones. Pinched sciatica. Bone spurs. Headaches that drum my skull. But this one was different. This one was hard to figure out. It started on a neighborhood walk, when the February sun was thin, and the air was clean and cold. Winston and Eliot, my two Puerto Rican street dogs, were bouncing along, inspecting every tree root and trash can. Out of nowhere, a sharp pain sliced through my leg, doubling me over. Two deep breaths. I caught my balance and was fine.

But as the weeks passed, the pain became more vicious. Two breaths turned into five. Catching my balance meant navigating a dizzying whirl of pain shooting throughout my thigh with no beginning and no end. I looked at my dogs, pleading to turn back, go home, swallow some Tylenol, and rest. 

“Where is the pain?” my doctor asked. 

“In my left leg. My thigh. Sometimes it’s in the front and sometimes down the side. Sometimes, it feels like it’s in the bone.”

We started with an X-Ray. “It’s not cancer,” she said.

It should have been good news; I had, after all, been cancer free for about three and a half years with hope in my heart for many more.

“So, what is it?”

 

Fall 2017

 

The first time around I had no pain. I went to my doctor in the morning for a routine urinary tract infection (UTI), and by afternoon my world was rolling down a steep rocky cliff. At the bottom was a urologist who nodded when I mentioned I had smoked for thirty-five years. 

More pee in a cup. Then an itty-bitty camera up my bladder, a series of biopsies, all positive, and eight weekly sessions of a treatment called Bacillus Calmette-Guerin, known to its friends as BCG. The nurse put my feet in the stirrups, hid beneath a sheet and spurted weakened tuberculosis bacteria into my bladder. “If you’re lucky, your immune system will attack the TB and eat the cancer cells while they’re there. If not . . . “

“Not lucky,” the urologist said. “You have very aggressive cancer cells. Not many – just a couple little clusters, but we’ll go with the surgery. It’s called a radical cystectomy, and you’ll have to be ready. It’s life-changing.” He said it all so matter-of-factly, “I’ll take the bladder, the uterus, the fallopian tubes, the ovaries, and half your vagina. But then I’ll stitch you up and send you on your way.” 

I swear he smiled like I deserved it for my years of smoking. I probably shouldn’t have said, “I don’t like you much,” but he smiled, and I said it, and things started to roll back down the hill. “How about we do this before Christmas?” 

My friend Louise insisted I get a second opinion. More pee. Another camera. Another biopsy. The second opinion was, unfortunately, exactly like the first. But this doctor didn’t smile at the prospect of putting my bladder in a jar.

 

I couldn’t sleep. I closed my eyes and cancer cells riddled my dreams, sledding down the wall of my bladder, throwing parties, smoking, getting drunk on my pee, playing volleyball with the TB, and laughing like small children. 

Then there were the visitations; my grandmother who died of breast cancer fifty years ago, seventy-eight pounds and barely able to lift her hand. My brother with metastasized skin cancer. When it was all over except for the dying, they stopped his dialysis, and for the first time in years, the blood cleared from his retina, and he could see light and shadow. Then he was gone. 

My high school boyfriend died from a brain tumor when he was at the height and joy of his career. Billie was cancer free for years until it was all over her spine. 

These were not peaceful deaths. They were aching, burning, too painful, too young. Each one of them encouraged me to face this new, awful truth. 

I tried to believe that I could be strong, that I was glad they caught it so early, that it was just a few cells. Cancer doesn’t have to be a death sentence, but it’s still c-c-c-c-c-c-cancer. In my b-b-b-b-b-body. Except for the ghosts, I was very alone. Friends wrote notes, took me for lunch, and lifted glasses in my honor. Dear Jesse gifted me with a wooden sword from a play we had done years before, a remarkable symbol of my warrior spirit. Jane, my partner of twenty-five years, promised she would be by my side no matter what. They told me over and over and over that I was strong, that they loved me, that I was not alone. But I was still very alone with the microscopic demons in my body.

And that hideous smile of the first urologist who sneered: Yeah. Well, your smoking . . . 

 The other thing was—I felt nothing. Except for that stupid UTI, there was no pain, no burning, no stinging. Nothing. I was in the hands of men who dangled cameras in my bladder, did biopsies when I was asleep, and promised me my best interest. But did they really mean that, or did they just want my bladder in a jar? Not that my bladder had been my best friend. No, it hadn’t. But it was still my bladder. Could I really trust them?

“Maybe it will all metastasize, and I can go with chemo and radiation instead.”

“I can’t believe you’re rooting for that.” Jane leapt from my bed, shocked at my outlandish wish. But at least those treatments sounded familiar. At least I could keep my uterus. I knew people who recovered from these treatments, and many of them led strong, creative lives. But this? 

I only knew one other person who had had this surgery. She lived many years. She laughed. She went out to dinner with friends and family and when her bag exploded, leaking onto the floor with her insides smelling like low tide, she laughed. “Oops. I think I had an accident.”

I hung her photo on my fridge, and there it stayed, even after it faded and the image ran from the moisture, and I thanked her for her warrior spirit and her ability to move on.

 

Winter 2018

 

 I had the final biopsy on Groundhog Day. My doctor shook his head. “It’s not good news,” he said. “You have two choices: you can get the cystectomy and hopefully live for many, healthy years. Or you can die as the cancer cells grow and cut off your ability to pee or to filter toxins through your kidneys.”

He lifted his eyebrow, and there it was. And if you thought you had known pain before, Honey – you ain’t seen nothin — 

So, okay. There it was. A decision. I waited till the semester was done. I had three months to toss and turn and chat with my ghosts. Plenty of time, right? I should have been ready. I should have absorbed and digested and accepted this transformation.

 

Spring 2018

 

I had the surgery in May.

“Be ready for a two-month recovery,” my doctor said. 

I bought new pajamas; my friends delivered food; I boarded Winston and Eliot for two weeks; hired an amazing dog walker for six more and got ready.

They wheeled me in, wheeled me out, lay me on a bed on the 8th floor of Brigham and Women’s Hospital in Boston, where the lights from the nurses’ station shone into my eyes and buzzers and bells rang all night. When I woke up, I couldn’t move. The rest is a blur. There was food and tea and nurses with needles and IVs and other nurses with blood pressure and temperature, and a morning circle of doctors and assistants, speaking really fast, and did I have questions? No? Good. Gone.

On the second day, I stood up.

On the third day, they wanted me to look at the stoma on my belly. Pink, like a nipple on my rotund tummy. “This is how you will pee now.” They wanted me to see it as beautiful, a new part of me. I refused.

On the fourth, they sent in a therapist, a Reiki woman, an ostomy sympathizer, and a social worker. Each begged me to look at it, embrace how my amazing doctor broke through the uterine wall, pulled my intestine from inside to outside, left me with a stump, and pasted a plastic bag over the stoma so I could pee. 

“Thanks. I’ll pass.”

On the fifth day, they sent me home. I tucked the bag into my pants and wobbled to the wheelchair at the door. 

“See?” the nurse said brightly. “No one will ever know.”

Does anything ever look so good as your bed after the hospital?

Jane brought me soup and tea and crackers, and together we binged seven episodes of Inspector Lewis mysteries.

I took short neighborhood walks with my friends and my dogs.

I did everything the home physical therapist asked: all the leg lifts and toe lifts and squats and stretches.

After two months, I went back to yoga, going very slow, finding how each pose blended with my new body. I was Warrior One. Warrior Two. I sunk into Child.

And then everything changed.

 

Summer 2018

 

The intestine collapsed. The pee could not move, and I couldn’t move without sharp, shooting pain. I needed to throw up. I wanted to sink into a hot bathtub, but I was paralyzed. I slept for four days. Jane pleaded with me to go back to the hospital, and I refused. 

Don’t make me go back there.

Deep breaths. Catch my balance. On the fifth day, I could walk. I was okay.

But it happened again a couple months later. After four days, my skin grey, my body weak, I went back.

The ER intern said, “Your intestine collapsed. It happens. Not to worry, though. We got this.” And he pulled out a thin, two-foot plastic tube. “It’s a shunt. We insert it into your stoma, run it down the intestine, and blow this little balloon. Here. Like this. It will be a little uncomfortable, but it works like a charm.”

Except it didn’t.

Or maybe it did. Sort of. The tube squished and squeezed and twisted its way from one side of my ribcage to the other. I gasped for air, and he told me to relax. Somehow, I went home. Fog sunk over me, and I moved through each day without much sight or sound. I remember the fever though. I remember texting my doctor. I remember he said, “Go to the ER. NOW.”

And there I stayed for five days, in a dark room by the window, with a kidney infection because the pee had backed up, and I shivered and shook, and the nurse gave me seven hot, hospital blankets and turned the heat in my room up to 78 and they pumped me full of antibiotics and sent me down to the basement where they nailed two bags into my kidneys to drain the infection. 

I threw up in recovery. Three. Four. Maybe five times. 

And for the next three months, I had three bags. Two in my back and one on my belly. The bags in my kidneys hung to my knees with tubes that would snag and pop and pee would be everywhere.

Who am I?

 

Winter 2018

 

“Got any more tricks up your sleeve?”

My surgeon twitched his lips and stared at the screen, and for the longest time there was nothing but silence in the room. The sun blazed on the treetops outside his window, and beyond that, cars lined up on Frances Street waiting for the light to turn green, for their turn to step into the hospital and get their shot of cancer cure.

“I think my warrior card is all used up,” I said.

He tried the shunt trick one more time. Pushing and twisting this plastic tube through my intestine. Then he stopped. 

“We’ll have to do the surgery again,” he said. “It won’t be easy. Nothing to eat or drink after midnight. Check-in tomorrow at 6 a.m.”

 

Am I remembering any of this right? It’s all so confusing. Was Jane around? Who took care of my dogs? Was this the time Jane drove them to be boarded, and I tried to stop a cat fight and found myself covered in cat scratches? Or the time she went to dinner with friends and forgot she was coming back to my house, but when I called, she came right away, and we sat up till five minutes to midnight drinking whiskey, watching my life eddy in tiny circles? Was it fall or winter or spring? 

And then there was the grief. This was also a hysterectomy, after all. And even if I was sixty-seven years old and didn’t have big plans for my uterus, and even if I fought with my bladder most of my life, suddenly it was all gone. My hope collapsed. The woman in me was in a jar. Or if it wasn’t in a jar, what did they do with my organs?

My dreams filled with wolves, alligators, hawks. My Jungian anima hung from a tree. The sidewalk that was once so familiar opened into a chasm of quicksand, ocean, rocky cliffs.

And do-over surgery.

Four days this time. New stoma. Same fog.

Crawled home to three seasons of Foyle’s War. Bombs dropped on London. Cries. Death.

Is this worth it? Am I trying to stay alive for this? They promised me my feet back, my best intentions, my life. But it seems like all that’s left is the bright light of the nurses’ station, blood pressure, temperature, blankets, and bad dreams.

Just rest. Make friends with the wolves, the alligators, the hawks. Be at peace with London’s windows shattering and the cries of anguish. Look at your body in the mirror. Show friends. Lift your shirt and share this incredibly private experience of a pink stoma like a third nipple and tubby belly bag dangling with pee.

My life will never be the same.

It will never be the same.

It will never be the same.

 

They said I was cancer free. That I was cured. “Goodbye.” My surgeon and I shook hands. I bowed and said thank you to the man who saved my life. He smiled. And the door closed. Had I really seen the last of Frances Street?

I had three and a half years.

 

Winter 2021

 

Winston, Eliot, and I were back in the woods, on our favorite trail that ran along the river. This was the place I imagined many years ago when the Reiki woman asked me to envision the moment I would know I would be all right. The trail was wide, the river was wide, and just ahead, just there, was the dike that crosses this wilderness. I have taken deep breaths. I had my life back. I’ve gone to the beach, back to teaching and working, and out to dinner. Jane and I were going places. Not far. There was a pandemic whirling around, after all. But we were going, nonetheless. Life was good.

 

But then this pain, zipping through my leg, shooting in from nowhere, doubling me over. My doctor said it wasn’t cancer, but it was something. 

By the time summer rolled around, the pain was incessant. It sizzled and burned and twisted my leg. I stretched and did yoga and deep breathing and meditation and physical therapy. I bought really big bottles of Tylenol and swallowed them three or four at a time. An X-Ray and CT of my hip showed nothing. The pain swelled, morphed, throbbed, shot, and shivered.

Finally, as temperatures cooled and autumn leaves tumbled out of trees, my old cancer doctor stepped in. 

He knew. “Get a biopsy. In the groin. Under the pelvic bone.” 

And there it was. A single lymph node the size of a three-inch egg, full of cancer cells, wedged under my pelvis, sitting on the nerve cells.

Radiation? No, the tumor is too large.

Chemo? Maybe later.

Surgery? It’s high risk, but . . . 

“Don’t worry,” my cancer therapist said. “Surgeons don’t take cases if they don’t think they can succeed. It’s not good for their brand.”

Dr. Steele, my wonderful surgeon, his face wrinkled with years of wisdom, still steady as an oak, took my hand that morning of surgery. His lips twitched when he smiled, and he told me he would see me on the other side. Confident, like he does this every day. He smiled again and mumbled something to the nurse, and then I was gone. Into the cold room with bright lights.

I woke up screaming. The pain was everywhere. The nurse gave me oxycodone and fentanyl and morphine, and I begged for more. For two hours I drifted on a small raft between anguish and oxy. 

Four more days. Doctors trotted in and out peering at my groin. When did I lose my modesty? Because it was completely gone.

It wasn’t until months later when I healed from this new surgery, from the infection that followed, that I started to understand. “High risk.” That was the term Dr. Steele had used. 

“The mortality rate for this kind of thing is relatively high,” he said. “The complications can be permanent. We had to clip a lot of nerve endings.”

He was quite matter-of-fact, but what he was saying was that it was a bit of a miracle that I was walking my dogs, that I was back to yoga, that I could still climb the hills in the woods. I wonder if he was surprised that I was alive.

For a year my leg was numb. Like the whole top half of my thigh was shot full of Novocain. 

“That might be permanent,” the nurse said. The doctors agreed. My therapist asked me how I felt about that.

And then one morning, it started to tingle. All the way from my pelvis to my knee. And then the tingle became a sizzle. Two Tylenol. Back on my feet. Walking the dogs.

The sizzle became a sting. The Tylenol wore off, and I took some more. 

The sting became a burn. Three Tylenol. Four.

This is all too familiar.

My oncologist looked at his screen. His COVID mask fell below his nose. “Is it the nerves coming back or is one being pinched by scar tissue? We’ll have to wait and see.” He lifted his mask back over his nose and looked at me with those blank eyes.

After a couple of weeks of Gabapentin and Tylenol in tandem, the sizzling, burning, stinging subsided. It became an itch.

And then the itch disappeared.

Sort of.

We’ll see . . . . .

 

Winter 2023

 

Five years later, after that fateful diagnosis, I am in awe of what nurses can do. Cancer surgery? We can do that. Car accident? You poor thing. We have a bed for you. Kidney infection? Gall bladder? Crohn’s disease? Yes, yes. We’ve got you.

But I am still left without a great deal of trust. I can’t believe that those little cancer cells haven’t packed their tiny bags and moved elsewhere. I believe this disease will dog me forever. I believe I will never be free of Frances Street, that I will watch the trees shed and grow new leaves more than once. I only hope I can see them change ten more times. I want to grow old with Winston and Eliot, watch them run free on the beach, leap over fallen trees in the woods, sleep with all the peace of the world at my feet. 

But the time between cancer flare-ups shrinks. Three years became nine months. And so, once again, I wait. Scan to scan to see what will happen next.

 

Last night my friend Ros told me about an art exhibit for visual artists to help people understand cancer. Photos and paintings to hang in public spaces. I have a photo of the stoma on my tubby belly. It’s beautiful but ugly, a nipple on a voluptuous breast, only it’s bigger, pinker, more intense. So personal. This is How I Pee. Do I send it? Cancer is ugly. It’s personal. It’s chemo and the loss of hair. It’s radiation and tattoos. Surgery and slicing off body parts. But we are beautiful. We find new ways to pee. New inroads to intimacy. Grief. Loss. 

Even after five years, I’m still not comfortable with it. I pee standing up. I splash the toilet seat. I make a lot of noise. My urine smells like rancid fruit punch. Every time I am in a public restroom, I wonder if the woman in the next stall can see my feet pointing the wrong way. Can she hear my pee splash like a guy as I point my bag toward the porcelain and not the water? When I step out to wash my hands, what is she thinking? There is nothing pretty in any of this. Nothing funny. 

What happens if Cambridge, Massachusetts is invaded like Kyiv, and I have to flee and can’t get any more of these horrible bags that I hate so much? I think about this often. An earthquake shaking me out of my house. A nuclear war and a long trek with two dogs to nowhere. A pack full of bags and dog food and water. And then what?

 

 

What does it mean to “choose life?” My doctor told me if I had the radical cystectomy and let go of my precious organs, I would be fine. Now, my oncologist was saying if I had prophylactic chemo treatment, my chance of being cancer free would leap from 50% to 65%. The treatment would have to be mild because my kidneys have been so compromised. “You might throw up. You might have terrible diarrhea. But you won’t lose your hair.” And so, I do it. Every time. Sometimes with hope. Sometimes with despair. But mostly for no other reason than that I can’t do nothing. 

The chemo was ridiculous odds, but it would only last for ten weeks. Once a week. Two weeks on, one week off. And for a half hour of the four-hour infusion, I endured the hideous, hot, unrelenting, burning pain of poison entering my bloodstream. Each week I came home exhausted and binged three or four episodes of Poetry in America until I was back in my body. And then I walked my dogs and slept.

 

My neighbor down the street has prostate cancer. He had years of chemo and radiation and surgeries. And each treatment kept him alive and destroyed a little bit of his soul until finally he said, “Stop. Enough already. Stop.” He ordered a new bed for downstairs for him and his 17-year-old Yorkie terrier.

And that was in the summer. Now it’s almost spring, and now and again I see him out there, ambling along with his dog, walking around the block, through the park. His skin is grey, and he walks with his feet in molasses. 

“Hi, Bill!”

“Hi, Marty!”

Who can say he didn’t choose life? When they told him more and he said “no,” didn’t he tell them that his life is his own? That living on the other side of an infusion and suffering the pain of poison coursing through his system is no way to live?

 

So far, I too, have chosen life. I have submitted to cancer surgeries, to bags being nailed into my kidneys for three months, to chemo, to shunts, and to infections that left me on the edge of death. And yet, I am alive. I am healthy and strong. I have lunch with friends. I wrote a novel. I run a small PlayLab and listen to new plays emerging from thin air. I take care of my girlfriend as aging chips away at the things we used to do so easily. I take my dogs to the beach on cold, grey, windy days and give thanks to the ocean and all her doctors that I am still on this amazing planet.

I am not done with this cancer journey The Gabapentin has the pain in my leg at bay, but it is still there. Something is still wrong. So, if they tell me again in three years or five years that they need to do another do-over? Remove another lymph node, or take my breast, or peel layers of my skin away, and if they say it will be more months of recovery, will I say yes? If they tell me they’re really going to go for the chemo this time and it will be months and it will hurt more than I can imagine, will I surrender my body to their research? To their knives and needles? 

So, I wonder again what it means to choose life. When do we say, “Stop?”

Cancer is not the death sentence it was fifty years ago when my mom’s mom shrunk away to nothing. Dana Farber, Brigham and Women’s, my surgeon, my oncologist, my therapists – they have presented me with a future. 

 Can I get ten more years? Can the dogs and I still walk around the block, taking our time, smiling at every kind of weather, smelling every tree root, looking for rabbits down every alley. The early spring air fills my lungs. 

“Hi, Marty.”

“Hi, Bill.”

“We’re still on our feet.”

“Yes, we are.”

Maybe that can be enough.

Marty Kingsbury is a poet, playwright, novelist and cancer survivor. Her latest novel, A Great Storm Rising, explores a teenage girl and her young brother growing up in the shadows of mental illness.