Spectrum

Photo by Ishwar/Flickr

By Fiona Tinwei Lam

RED (life)

My partner was brewing a pungent, murky brown concoction on the stove. The label on the box beside the stove listed burdock root, slippery elm bark, sheep sorrel, and turkey rhubarb root, but it gave me no clue as to the purpose of the ingredients.

“What’s it for?” I asked, sniffing the pot.

Ted mumbled something unintelligible.

“Is it a laxative?” I asked.

“Not exactly.”

“For digestive problems?”

He paused. “Nope.”

Puzzled, I tried again. As a custom cabinet-maker, he had been working long hours and weekends but seemed energetic and healthy. “Is it for your anemia?” Several months before, he had been diagnosed with a severe iron deficiency, but he’d been taking a supplement.

“Kind of.”

I made a few more failed guesses. Finally, he said flatly and quietly, “It’s for cancer.”

I stared at him. “Why on earth do you think you have cancer?”

He kept stirring the pot. “I’ve been passing blood.”

When I urged him emphatically to see the doctor for more tests, he shrugged. He carefully poured the steaming brew through a sieve into a couple of large jars, not spilling a single drop. “I guess I should.”

•••

Several weeks later, we sat with the gastroenterologist in a small examining room, looking at a color print-out of the images taken during an internal scan of Ted’s intestines. One image revealed subtle polyps that looked hardly more sinister than crimson crayon scrawls. Another image showed the slight bulge of a small polyp that resembled a small fleshy boil or pimple. But then there was the final image: it looked like a blob of gummy red gelatin encasing curled-up maggots. It filled a third of the intestinal tunnel and resembled a fetal mouse or fetal frog. I repressed an instinctive shudder.

“It’s cancer,” the doctor said without drama. “I took a biopsy, but I’m fairly certain.”

So this was what cancer looked like from the inside. Ted’s father had died over two decades earlier of complications following stomach cancer surgery. A decade earlier, Ted`s eldest sister had died of colorectal cancer at the age of fifty-seven. Years of gruelling chemotherapy, radiation and experimental therapies had failed to stop its spread. We were informed that people with a first-degree relative with colorectal cancer are at a higher risk of developing it. Being the most commonly diagnosed type of cancer after prostate cancer for men, it is the second leading cause of death from cancer overall, although if detected early, it is over ninety percent curable.

The doctor matter-of-factly went through the process that we’d be going through: staging to determine how far the cancer had spread, an ultrasound and CT scan, analysis of the biopsy results, a referral to a surgeon. He drew a diagram of the kind of bowel resection surgery that Ted could expect to undergo—it looked deceptively simple, a cross between plumbing repair and alterations at a tailor’s.

Strangely, neither Ted nor I was alarmed. Perhaps we’d used up our storehouse of apprehension during the weeks leading up to the colonoscopy From this moment on, he would go through the necessary tests and procedures with all the hoops and steps laid out for him. It was as if we were both buckled into the seat of a medical amusement park ride called “the oncological flow chart.” A positive result on one test might lead to a diversion down a more complex chain of procedures; a negative result might lead to a positive destination reached in a shorter time. None of the flow charts in the cancer brochures led to the word “death.” But it existed, unwritten, just over the edge.

•••

We arrived for Ted’s surgery at Vancouver’s historic St. Paul’s hospital on the first day of August. As we dutifully followed the painted red line on the floor through the body of the older buildings into the newer sections, we passed commemorative plaques about the nuns who had fundraised on horseback at mining and logging camps to raise funds to found the hospital at a time when the current downtown site was located on the outskirts of wilderness.

Little did we know how familiar we would become with that brick edifice with its threading red line. Advised initially that he might expect a stay of five days, Ted would remain there for over four weeks. I would be taking the bus there daily, sometimes twice daily, for the remainder of the summer.

 

VIOLET (spirit)

We’d prepared for weeks before the surgery, going in for Ted’s appointments with the surgeon and for scans, as well as to the pre-admission clinic to review hospital checklists, instructions, and test results which I gathered in a purple file folder on the kitchen counter near the phone. That file became both compass and hub through the summer and fall.

On the morning of the operation, we were the first to arrive at the day surgery department at what seemed like any typical waiting room—institutional chairs arranged against the pastel walls, a coffee table with outdated magazines. After he checked in at the reception desk, Ted changed into a hospital gown and we sat together until he was called. It didn’t seem to be a place of sufficient gravitas, of momentous, radical change, where your guts would be sliced open, dismantled, rearranged or removed—or where you could die.

Because the surgery was supposed to last three hours, I took the bus home while Ted got his abdomen shaved and epidural and intravenous lines inserted. Too restless, I returned downtown. There were booths and kiosks set up along Davie Street as part of a block party in advance of the Pride Parade the next day. At Bute and Davie I walked by the celebrated rainbow crosswalk, Canada’s first permanent rainbow-painted crosswalk added to the West End in 2013 to celebrate the thirty-fifth anniversary of the local Pride Parade. I went into a dollar store to buy a small rainbow flag to mark the festivities. Inspired by Judy Garland’s song, “Over the Rainbow,” the flag had been designed for the 1978 Gay Freedom Day Parade in San Francisco to represent the diversity of the LGBTQ movement, with special symbolic significance assigned to each colour.

Back at the hospital, I headed upstairs to Ward 10B to look for Ted. He was a bit groggy but conscious and smiling, and looked surprisingly normal except for the various tubes emerging from underneath his sheets that were connected to a catheter, an IV, and a patient-controlled hydromorphone dispensing machine known as a PCA that he could press whenever he was in pain. I pinned the rainbow flag next to the “Nothing by Mouth” sign that was turned face down on the bulletin board behind his hospital bed, wondering why each of the six beds in the room had bulletin boards with those signs and no artwork or photos.

As there didn’t seem to be any kind of bulging from his abdomen, I asked Ted if the surgeon had given him an ostomy. He wasn’t sure and hadn’t had a chance to ask. The whole idea of having your intestine protrude out from your body to expel feces into an external bag had made us both queasy and anxious, despite our having watched the obligatory DVD at the pre-admission clinic that showed gorgeous athletic men and women blithely unaffected by their ostomies.

With his permission, I gingerly lifted the sheets and then his hospital gown, bracing myself for the worst. We both peered down at his belly. There was a narrow tube leading from a dressing a few inches beneath his rib cage to a small disc-like Hemovac drain to remove the build-up of excess blood and fluids after surgery. On different parts of his belly were five neat sets of black staples along puckered, deep red incisions, with the longest row near the pubic area. Over the weeks ahead, the redness would soon fade to purple, and then eventually light brown, until the scars from the incisions were barely perceptible.

I put his gown and the sheets and blankets back in place. I felt like celebrating and considered heading out to watch the parade the next day to wave our little Pride flag. Ted had made it through surgery successfully. He was in good spirits. The cancerous tumor had been removed, with no need for an ostomy. Maybe this whole ordeal wasn’t so terrible after all?

 

BLUE (serenity)

Ted found it difficult to sleep on the ward. The blue PCA machine dispensing the hydromorphone and IV fluids ticked and clucked day and night without a break except when the IV or the medication needed to be refreshed. We pretended there were miniature robotic chickens trapped inside it, even tried to imitate the sounds. He had to take it with him to the bathroom, the IV pole draped with tubes and with electrical cords that had to be pulled out each time. But the PCA alleviated the discomfort, at least during those first few days. I fretted about the possibility of addiction, but he waved my concerns away and kept clicking the button to bliss.

When he’d been first diagnosed with colorectal cancer, I had wondered how I’d feel about the hospitalization, bed pans, diapers, catheters, the physical changes to his body, the possible ostomy. Although we had lived together and become more interdependent over the past four years, he knew that I still had some doubts about our relationship. He was concerned that his care would become a burden that I would resent.

“You don’t have to come every day,” he told me.

I looked at him in disbelief. “Of course I do!”

And I did. The day after the operation, I ventured out to drift among the crowds in the intense August heat to get a glimpse of the parade. The noise and hoopla were fun, but ultimately it felt jarring to be surrounded by the teeming exuberance and staged goodwill. I rushed back to the hospital where it was quiet and cool and where I really wanted to be—with Ted.

Most of the time, after arranging plants and flowers and cards on the sill and getting him fresh ice chips, I’d gaze out the window by his bed. I’d look down at the shifting rhythm of traffic on Burrard Street and out at the glass towers that reflected both each other and a faceted sky. After drawing the curtains between us and the other patients so we could at least have the illusion of privacy, I would sometimes sit facing him on the bed, my back against the footboard, my legs alongside his, so we could hold or rub each other’s feet, which felt more intimate than holding hands.

Sometimes after the visitors had gone and if my twelve-year-old son was staying at his father’s, I’d remain to watch dusk fall across the city. I didn’t have to be social or chase down Ted’s frustratingly elusive leprechaun-like surgeon and his wandering medical team. The fluorescent lights would be turned off and everything would slowly become bathed in blue. I’d watch a DVD with him on the old portable player I’d brought, the light from the screen flickering across his face.

Other days seemed very long. I wouldn’t realize it until I returned home. Saturated from the hospital, I would want to collapse in bed, but I’d face a backlog of texts, voicemail, and email messages. My work, household chores, and tasks accumulated, undone. I had just enough energy to deal with Ted at the hospital and my son at home and not much left for anything else. But it seemed impossible for it to be any other way. Whether I was examining Ted’s stitches and dressings, helping out the nurses by changing his hospital gown or diapers, giving him sponge baths, massaging his feet, taking him for walks, or just sitting with him, it was important for me to be there. Our lives were entwined. Until then, I hadn’t been aware of how much. What bound us together wasn’t a yoke, leash or chain—it was a root.

 

ORANGE (healing)

Very soon after his surgery, Ted started receiving clear fluids. The little four ounce chilled plastic juice containers started to pile up: mostly orange, but grape and apple too. The inevitable hospital jello came also— yellow, orange, and red, laden with sugar, artificial flavours and colours, and probably made from gelatin extracted from the bones of factory farmed animals. Dishwater-like broths of questionable origin arrived as well. He downed them all willingly.

As his incisions seemed to be healing well, the type and level of foods swiftly advanced from meal to meal as the dieticians tried to speed his progress and ready his digestive system for his possible discharge from hospital in a few days’ time. He started receiving cream soups—broccoli, carrot, mushroom. When he started getting little cups of orange sherbet and vanilla ice cream, Ted’s eyes lit up as he devoured each one. His abdomen became increasingly bloated, however. We started joking that he was growing twins. Then rice with green beans and fish arrived, followed by a chicken sandwich, puddings. The stack of unopened juices grew taller. His belly ballooned out, painfully distended. The traffic jam inside his digestive tract became untenable. Intense, continuous nausea overcame him. He stopped smiling, his gaze turned downward and inward. The food was left untouched.

 

GREEN (nature)

Ted rejected the insertion of a nasogastric tube for two long days. But soon, it was impossible for him to think or sleep.

“Could I get more medication for the nausea?” he pleaded with the long-suffering nurse on the ward that day.

“You’re already on the highest dose,” she said shaking her head, disapprovingly. Her tone of voice shifted into persuasive mode. “Why not try the NG tube? You’ll feel better.”

Ted was fighting his body’s natural urge to reject the food. A scan showed that a gas pocket near his duodenum was causing the blockage. He finally agreed. It took five painstaking, arduous attempts by the nurses to feed the NG tubing down his nose into his stomach while he gagged and vomited on the floor. One attempt stopped him from being able to speak. He had to yank out the tube in order communicate to them that they’d threaded it in the wrong direction, toward his trachea instead of his esophagus.

When I returned later, he was sitting with his eyes downcast with concentration and discomfort. He seemed demoralized and exhausted. Green fluid was being suctioned out through his left nostril via a long tube attached to his nose that snaked into a large plastic canister attached to a wall unit. The canister was already half full. Canister after canister was filled and emptied that day. Ted’s nausea started to subside, but talking was kept to a minimum. I fended off friends from visiting.

“I’ll never look at a green smoothie the same way again,” I told him.

Over the course of the weeks ahead, it seemed almost everyone else in the gastrointestinal ward would be “producing” the exact same green fluid irrespective of what they were ingesting, as if the ward were some bizarre factory. The sound of vomiting was common. The cleaners were regularly called in to mop the floor of spilled bodily fluids of every type.

A number of patients came and went, part of the shifting social microcosm of the ward. We joked about pitching a reality TV show called Ward 10B. There was an elderly Danish man with dementia who was scheduled for a reverse ileostomy but kept pulling out his IV and trying to flee. Beside him was an outdoorsy young man who’d been airlifted to the hospital as a result of tearing his spleen after a dive gone wrong. After a few days, he was replaced by a wiry, grizzled fellow with keen, bright eyes, who swore and complained vociferously about the food. “What’s this shit?” The patient who had a bed next to Ted’s appeared to be a new immigrant. His chador-clad wife had her hands full trying to shush two young, precocious children. He was soon replaced by another patient whom we nicknamed “The Prince.” He conversed frequently and loudly on his cell phone in Farsi while his mother fussed over him. “More ice!” he commanded the nurses repeatedly.

The insertion of the NG tube did not end Ted’s problems. Just after his surgeon left for summer vacation, Ted’s temperature began to rise dangerously. His distended belly became tender and painful. The fluid in his Hemovac tube became pus-like and fetid, as if something were rotting inside him. A CT scan showed that there were air bubbles leaking from the re-sectioned area—infection had set in. He was put on an intensive course of antibiotics via IV and his vital signs were monitored every hour.

A peculiar foggy terror filled my throat and chest. My every movement seemed sluggish as if I were trudging through swampland, but certain thoughts flitted around in obsessive loops. I questioned the doctors, sent detailed emails and texts to his family members. I peppered the night nurses with questions when I’d get home late at night. Some would brush me off; a few would update me. If he deteriorated further, he would have to be admitted to the Acute Care ward for continual monitoring and more drastic medical interventions. A second operation could be risky, and if it occurred, even more of his colon might need to be removed with the likelihood of an ostomy, probably a permanent one. He might get another infection. Recovery would be longer, slower and more complicated.

Because his system had rejected most of the food and drink they’d given him, and because of the need for the re-sectioned bowel to heal properly, the doctor prescribed daily liquid nutrients, called total parenteral nutrition (TPN). A nurse told us that each bag cost $1000 to make fresh daily and had to be specially transported to St. Paul’s from another hospital laboratory. We named it the Crisco milkshake but it seemed more akin to breast milk. Chock-full of lipids, sugars, vitamins, trace minerals, and amino acids, it was a creamy white substance that was administered by an extremely narrow catheter threaded into a central vein in his chest. A nurse told me that the leftover TPN discarded at the end of each day supposedly worked well as plant fertilizer. (I took some home for the garden—our apple tree had a bumper crop the next year.) The TPN would sustain Ted for the next three weeks while he ingested nothing but ice chips. The orderlies with the food trays would stay away: the sign on the bulletin board was now turned face-up.

•••

The lounge in the ward had a small bookshelf with a few outdated magazines, several hospital foundation publications, and a number of dog-eared paperbacks. I noticed the cover of a single National Geographic magazine in the stack. The pristine copy was dated 1968 and its feature article described the plans for the first lunar landing. During those weeks in hospital, I sometimes felt like we’d landed on an artificial planet, a desolate sterile landscape with little vegetation, shifting inhabitants, its own unique language, hierarchies, protocols, and undeviating routines.

The whole ward seemed utterly divorced from nature: its windows wouldn’t open; the sliding glass door to the balcony off the lounge was locked; the concrete balcony itself was dirty and uninviting; there was no fresh air and little greenery other than a few limp, discarded bouquets and dehydrated plants left behind by discharged patients. I placed a hydrangea plant in the corner of Ted’s room so that he would awaken to their large blue clustered heads and rich green leaves every morning. As soon as they entered his room, the nurses and visitors would see something alive and beautiful and thriving.

 

YELLOW (sunlight)

Ted was supposed to have regular, short walks to maintain his circulation, increase his strength, and speed his healing. At first, it took immense effort just to get to the bathroom. He’d prepare himself with a shot of hydromorphone from the PCA, put on his special rubber-soled hospital socks, put on another hospital robe to cover his back, disconnect the NG tube during the days it was in place, clip the Hemovac to his gown, unplug the two electrical cords from the wall, drape the cords on the pole, pull himself up, and then try to walk step by shaky step without losing his balance. Getting back to bed meant going through the whole routine in reverse.

Eventually, he was able to get past the doors of the ward to reach the service elevators, next to windows that looked out onto the expanse of English Bay. He would pause there for several minutes, gripping a railing for support, before enduring the arduous fifty meter journey back to his bed.

“I was in better shape before the cancer operation,” he noted.

Right up to the day before the operation, he had been working full-time. He’d been full of vigor, tanned from a recent trek around ancient Haida villages up north, and ready to hop on his Yamaha motorcycle at any opportunity. Now he couldn‘t walk across a room without effort.

I thought of all those expressions—“gutsy,” “gut instincts,” “gut reaction,” “gut-wrenching,” “gutted,” “it takes guts,” “spill one’s guts,” “bust a gut,” and “no guts”—based on the word “guts” derived from the Old English word guttas for bowels or entrails. The adjective “visceral” comes from the Latin word viscera for inner organs also. It suddenly all made sense: the guts are located in our core, the elemental source of instinct, courage, determination, stamina, will, and strong emotion. The operation had hit Ted literally “right in the gut,” the stronghold of his vitality.

But as the days passed, his stamina gradually increased. We could extend his usual walk from the service elevators and back to include the ward down the hall. Finally, he was ready to try to take one of the notoriously slow elevators down to the fourth floor cafeteria and patio. As we waited, I could see how taxing it was for him just to stand.

The elevator finally arrived. Ted winced at every bump and jolt as we descended. The long imposed fast had eroded his body’s insulation. We made our way toward the almost vacant cafeteria. He steadily exited the open glass doors and was outside for the first time since his admission over three weeks before. As the late afternoon sunlight touched his skin, tears sprung to his eyes.

“It must be the medication,” he said.

My sister pulled up a plastic chair and helped him sit down. The plants in the concrete planters around us clearly needed watering. There were food wrappers and a few empty cups lying around, and some of the tables needed a good wipe. But it didn’t matter. We sat quietly while he closed his eyes and drank in the sunshine and the fresh air with an intense wordless gratitude.

“This is amazing,” he said at last, opening his eyes and smiling.

We talked about his progress to date. Ted had lost most of his muscle mass: his already slim 5’11 frame had been whittled down to 145 pounds. He would soon start a very cautious clear fluid diet. We stayed outside for about twenty minutes before Ted asked to return. This was the longest walk he’d taken since his admission and it had sapped his diminished reserves.

We would visit the patio again only once or twice more before his discharge; it was easier for him to take short unaccompanied walks on his floor. During the end of his stay, the monitoring of his vital signs grew less frequent, tubes were removed one by one, fewer and different medications were administered. He was even able to take his first shower. He was being released in more ways than one.

•••

Discharge day. Ted had filled out the necessary papers and questionnaires, been briefed on his diet and pain medication. He also was entirely tube-free at last. As he put on the jeans and shirt he’d arrived in thirty days before (much looser now), I removed my son’s school watercolours from the wall and the cards from the window sill and bulletin board, erased my daily list of questions for the doctors from the whiteboard, packed up the magazines, DVDs, and the rainbow flag. The room soon looked as blank and anonymous as it had been before our arrival.

“Good luck,” said the nurse who had dexterously changed Ted’s dressings, given him injections, and adjusted the IV over the course of the month, all with an artificial arm and hand.

We gave him the still healthy blue hydrangea for the staff room, and waved at the head nurse who was engrossed with paperwork. There was no one else to say goodbye to. Almost all the patients that we’d met in the beginning of Ted’s stay had been discharged earlier. Everyone was going about their business as if this were an unremarkable day.

As we walked toward the elevators, I wondered how many patients had stayed in that ward. How many had lived and how many had died as a result of their operations? Every bodily fluid imaginable had touched those floors. Every kind of person had lain in its beds, and every kind of emotion had been felt—boredom, irritation, anger, fear, despair, agony, exhaustion, relief, even joy—the full spectrum of human emotion and humanity.

The threat of a possible cancer recurrence would linger on the horizon for the foreseeable future, but it didn’t matter. Exactly one year and one week after his surgery, we would finally get married at a private family ceremony in our backyard. As my brother drove us out of the hospital parkade onto Burrard Street into the late summer sunlight, Ted teared up again. “It’s the medication,” he said. “Makes you emotional.”

•••

FIONA TINWEI LAM has authored two poetry books, Intimate Distances and Enter the Chrysanthemum, and a children’s book, The Rainbow Rocket, about a child witnessing his grandparent’s struggle with Alzheimer’s disease. Her prose and poetry appear in over thirty anthologies. Her past work has been shortlisted for the Event creative nonfiction prize and City of Vancouver Book Award, and she recently won The New Quarterly’s Nick Blatchford poetry prize. Her video poems have screened at festivals internationally. She edited The Bright Well: Contemporary Canadian Poetry about Facing Cancer and co-edited the creative nonfiction anthology Double Lives: Writing and Motherhood. She is the co-editor of a forthcoming anthology of creative nonfiction and poetry about marriage, Love Me True: Writers on the Ups and Downs, Ins and Outs of Marriage. Born in Scotland, she immigrated to Canada at a young age with her family. She practiced law briefly before becoming a writer and teacher at Simon Fraser University. www.fionalam.net

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9 thoughts on “Spectrum

  1. I’ve been through similar trials with my own husband, and I’m sending you both a big hug right now. Gutsy and gut-wrenching, for sure. May you both continue to heal.

  2. What an evocative, lovely piece. I’d forgotten the clarity, the “of course” element of illnesses, along with the long, not-quite-tedious days. So insightful–thank you for sharing, Fiona.

    1. Thank you for reading this and your comments! Yes, so many have gone through a cancer diagnosis, surgery and treatment, let alone other grave reasons for hospitalization. It’s truly another world, that surreal microcosm, that exists parallel to “regular” and “normal” life.

      Fiona

  3. Thank you for your honesty, thank you for showing the dull and often painful that gives hope, thank you for sticking past the hospital stay, thank you for your unselfishness. I could go on but it’s best to sum up with thank you for your love.
    You gave me the gift of flexing my empathy.
    Bravo,
    Diane

  4. Fiona, this is a powerful, and may I say, visceral, piece of writing. I ached and hoped through the whole spectrum. Such a difficult time in your lives, given emotional immediacy through wonderful writing and a brilliant bit of structuring.

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