Esophageal Cancer 101
by Terry Ratner, RN, MFA
Part 2, 3, 4, 5 & 6 recently added
A day to remember
It was a Thursday, October 9—my birthday, when my husband, Michael, underwent an endoscopy procedure. For thirty long minutes, I sat in a waiting room, looking around at the starkly decorated walls, wondering how everything happened so fast. I tried to think positively about his recent symptoms: difficulty swallowing, a dry cough when drinking, and an early feeling of fullness while eating a meal. It might be attributed to a hiatal hernia, or narrowing of the esophagus, or perhaps it’s just nerve involvement. As a nurse, my imagination went wild.
I felt alone as I sat in the waiting room, listening to the hum of the air-conditioner and the conversation between two receptionists about restaurants and dating. The doctor had squeezed our appointment in during his lunch hour. That was my second hint that something was very wrong. I wondered what all the hurry was about. I tried to stay calm, but my stomach felt skittish, light, like it was being forced up to my neck and then down into my chest cavity.
A nurse came out to the waiting room. “You can come back now, Mrs. Ratner,” she said without looking up at me. “Your husband’s back in recovery.” I asked her how it went and suddenly this friendly preop nurse didn’t want to talk. “The doctor will be out shortly to explain his findings,” she said.
“Your husband has a 2.5 cm tumor at the junction of the stomach and the esophagus. I sent several biopsies to pathology. I believe your husband has adenocarcinoma.”
Being a nurse, it wasn’t necessary for any further explanation to understand the doctor was saying the unspeakable—telling me my husband has cancer, a fast growing cancer in the esophagus. My head started to spin and my legs felt like rubber as I tried to keep them from shifting side to side.
“Maybe you need to sit down and discuss this,” I replied as I stared at the doctor’s white coat focusing on his last name, embroidered in black thread above the pocket. I glanced at my husband’s face; his eyes were closed and he looked relaxed for the first time since his symptoms began to surface—six days ago. His body lay hidden under a cream-colored blanket and I wondered if he heard the word, “cancer.” I needed to let him rest for a while and not worry about anything, as there would be plenty of time to agonize in the weeks to come.
The gastroenterologist had biopsied enough tissue from the tumor site to feel confident about his diagnosis of cancer. “The pathology report will be here in a couple of days,” he told me, giving me some hope that he might be mistaken.
“This is not a good time,” came out of my mouth as I began to sob. “There never is a good time for this type of diagnosis,” he told me with compassionate eyes. I must have asked him three times, “What is the size of the tumor?” His response was a number I won’t likely forget—2.5 centimeters.
I lived with a secret for the weekend—Michael had esophageal cancer. It was one of those secrets I chose to keep to myself until we had a definitive diagnosis. We played word games Saturday and Sunday, never once uttering the unspeakable word—cancer. Our lips formed the words tumor, swallowing disorder, and hiatus hernia, but we shied away from the ‘C’ word.
The pathology report came back on a Monday. When the gastroenterologist phoned me at home, I already knew what he was about to say. Our life, as we knew it, was about to change.
Esophageal Cancer 101
The official diagnosis was the following: Adenocarcinoma, cancer of the esophagus (EC), located at the gastroesophageal junction, where the stomach meets the esophagus. For the next 28 days, our lives overflowed with medical tests, surgeon consults, and round-table family discussions. Those days constituted a span of time focused on a disease process, fueled by an initial shock, followed by a surge of adrenalin, and choreographed by the meticulous and calculated actions of a wife, nurse, and mother. I had no time for self-pity—not now, but more about that later.
Preparing for the unknown
I quickly became an astute student of the transhiatal esophagectomy surgical procedure, which would be performed when my husband had his business and personal matters settled, as one surgeon advised. Just listening to those words, “settle your affairs, put things in order” brought to the forefront feelings we normally keep in reserve—emotions connected to thoughts of loss we try not to think about: losing a loved one, a husband, a vital partner in our life, and dealing with the possibility of death and dying.
When I looked at my husband, a robust and muscular man from years of biking and workouts, I wondered what the results of this surgery might be—a surgery which entailed removing ¾ of the esophagus and stretching the stomach vertically to replace a removed muscle, leaving behind a portion of the stomach in tact. The surgeon warned us of the various types of potential complications such as a leak, a lung puncture, losing the vagus nerve, or vocal cord damage. He told us we should expect an initial weight loss of twenty to thirty pounds and possibly more during his postop bout with radiation and chemotherapy. At the end of his consultation, the surgeon looked us in the eye and said, “This isn’t your “typical” surgical procedure.”
There wasn’t a day I didn’t receive a phone call or an email from well-meaning friends who had a cure for cancer. If it wasn’t a Four-Herb Ojibwa green tea from Canada, it was an alternative clinic in Oregon, or a surgeon who performed a laparoscopic less invasive surgery in California. The options were overwhelming, as was the research that followed.
In the days leading up to his surgery, our love for each other blossomed: we went on long walks, communicated our deepest dreams and hopes, spent more time with family, worked together on business projects, held hands as we slept pressed together, kissed in the dark, and talked kinder to one another.
Days before the surgery, when darkness fell upon the house and Michael lay sleeping soundly next to me, I’d listen to the steady rhythm of his breaths sounding like small puffs of air. When he’d fall into a deep sleep, I’d silently slip into the bathroom, close the door and softly sob. I’d ask God why this was happening to us. In a whisper, I’d pray, feeling ashamed of my lack of faith.
Day of surgery
The family filled a small private surgical waiting room. There were ten of us: our adult children, Michael’s brother and sister-in-law, two of my dearest girlfriends (nurses) and my husband’s best friend, Steve, a retired orthopedic surgeon. We sat there making small talk for thirty minutes until a colleague of mine, a clinical manager in the perioperative area, asked me to follow her back to preop holding where Michael was getting prepped for his surgery.
I watched the preop nurse fumble in her attempt to insert an intravenous catheter (IV). It blew within seconds, (nurses’ jargon), which means it went through the vein. I thought about all the IVs I’ve started over the years and how uncomfortable it was when a family member was present, especially when it was a nurse. I took a step back and began to talk about my work as a preop and postop nurse at this very hospital—in this department for over twelve years. I must have prepped hundreds of patients undergoing a variety of surgeries: open hearts, kidney and liver transplants, mastectomies, cholecystectomies, appendectomies, every type of surgery imaginable, yet I never remembered prepping a transhiatal esophagectomy patient.
And yes, the nurse’s second attempt to start an IV was successful.
Esophageal Cancer 101
During my three-hour wait in the surgical waiting area, I argued on my cell phone with my 93-year-old father, vented to family and friends about a physician’s partner being a ‘no show’ for the surgery due to an office mix-up, gave a Rabbi the cold shoulder, and stood united with my family praying for a man we all loved.
Playing the cancer card
The argument with my father stemmed from an avoided confrontation about his treatment of family and more specifically, his treatment of my husband’s ordeal. No get-well card, no words of endearment, no ‘I wish you the best’ or ‘thinking of you’ came our way during the month before the surgery. His behavior had nothing to do with his mental ability; I knew this because each time I phoned him he started the conversation with, “How’s Michael” and then went on to talk about the cold spell in Chicago, where he resides, or what book he was reading. What I failed to realize then was how his reaction was just an extension of a life-long habit of removing himself from other people’s difficulties and pain.
Being in a vulnerable state-of-mind, I was stressed beyond words and looking back on this incident, I understand just how fragile Michael’s illness left me; touch me the wrong way and I might explode, respond inaccurately or carelessly and I might pounce on you, turn your back on my husband and I’ll try and understand your reasons, but I’ll never feel the same about our friendship. There wasn’t anyone who I came in contact with who was above reproach for doing or not doing what I thought was the “right thing under these circumstances.” There was no one immune to my anger, my impatience, and my sadness.
Gods and surgeons share their powers
My husband’s procedure, a transhiatal esophagectomy involved two incisions; abdominal and neck, and usually two surgeons. The physician who was a ‘no show’ is a gifted surgeon, so you can imagine my shock when a nurse wheeled my husband toward the surgical area in the presence of only one surgeon. I remember watching the nurse get smaller and smaller as she made her way down the long corridor toward the double doors leading to the OR. I turned to my best friend and said, “We’re missing a surgeon here. What’s going on?” She put her hand on my shoulder and in a quiet voice whispered, “He’ll show up, don’t worry. He’s probably taking a short cut to the OR.” Her soothing voice allowed me to calm down, but I only half believed her. It was too late for my husband to back out now. I no longer had any control over the situation—it was in God’s hands.
The unwelcome guest
Meeting a rabbi in a surgical waiting room isn’t the best way to greet a member of the clergy. If I had requested to see the hospital rabbi, this meeting might have had a different outcome. When a middle-aged man approached me and introduced himself as a member of the clergy before saying, “I finally found you” my first thought was something went wrong in surgery. I felt the color drain out of my face and I asked him why he was looking for me. “That’s my job,” he replied. “I make rounds on Wednesday.” I told him thank you, but we have a rabbi. He extended his hand and gave me his card, just in case, before he turned around and left us to our surprised and confused thoughts about the intrusiveness of his visit.
United we stand
After two hours of waiting, my daughter-in-law suggested we try and eat something in the cafeteria. When we stood up to leave, our timing was impeccable; we pushed our chairs back, stood in unison—a choreographed dance to perfection. We were united, fighting for a cause, praying for the man we all loved, hoping for the best possible outcome for this complicated surgery. We knew that the next time we saw Michael, he’d be intubated, loaded with morphine, and breathing with deep mechanical yelps, lying on a hospital bed surrounded with intrusive connections: catheters, tubes, wires, and drains. We’d take turns visiting him, stroking his head and softly call out his name.
Esophageal Cancer 101
It’s exactly two hours since my husband, Michael, was wheeled down the hospital corridor toward the surgical suites. Yes, they refer to them as suites, as if they are large, comfortable rooms with all the amenities of a four-star hotel. As a perioperative nurse for fourteen years, I understand the inner workings of an OR: bright overhead lights, frigid circulating air, scalpels, sponges, and sutures lined up on metal carts, a circulator retrieving supplies while a scrub nurse and surgeon stay in their sterile fields humming melodies blaring from mounted speakers. And all the while my husband naps under the supervision of a hand-picked (by me) anesthesiologist, who tracks Michael’s vitals on wall monitors, aware of all his inner workings. I wonder what song they’re playing now.
“Half-way through,” I told myself as I watched my family head back to the waiting area after sharing a light lunch. Sitting on an easy chair in the hospital lobby, I closed my eyes and listened to the echo of clicking heels on the stone-tile floor. I imagined Clydesdale horses, with their broad chests, frying pan sized hooves and luxurious leg feathering, prancing down cobblestone streets. I’m reminded of a trip Michael and I took a few years back to Victoria, B.C., where we watched a parade on Government Street; a quaint area with colorful flower baskets hanging on every corner and English tea houses surrounded by lush gardens. It represented a time when we were carefree without the complications of illness and uncertainty—a time when we mapped out our future together—a time when we had control over our lives.
My rubber-soled shoes are silent as they walk these familiar halls, one foot ahead of another, an effortless process. Navigating my way around the hospital was easy; I knew the layout: entrances, staircases, every twist and turn in this huge facility including the detours through dimly lit hallways leading to outside buildings. I could find my way around blindfolded, as I’ve worked here since I graduated from nursing school eighteen years ago.
The exhaustion from the last month has caught up with me. I seek a quiet place—away from family, hospital colleagues, and well wishers who call my cell phone wanting hourly updates. The chapel, located on the first floor across from an outside garden, looks inviting. I’m relieved to find I’m the only visitor. Sitting on a wooden pew, I stare at a stained glass window scene: a holy man with a silver headdress, red flowing robe, kneeling next to a young man lying supine with a helpless look on his face as if he’s on the verge of tears. I bury my head in my hands and begin to pray.
A receptionist notifies me that my husband’s surgery has ended. “You can see him in the recovery area,” she tells me as she checks my name off the list with her pencil. “He’s in space twelve.” I picture the pod where Michael is being recovered; his cart is parked in front of a window with a picturesque view of a mountain shaped like a camel’s back—a place where my husband and I used to hike. It’s a window where clouds pass by as if they are trying to escape the suffering—a window that acts as a barrier from the outside world as it shuts out the sounds of illness; families who confront truth with muffled sobs and whispered conversations.
As I approach the automatic double doors, I imagine what Michael might look like: his face gaunt and pale, labored breathing and a chest cavity carved down to nothing with tubes and wires sticking out from every orifice on his body. Even though I’ve recovered hundreds of post-surgical patients during my career with every imaginable diagnosis and surgical outcome, I hesitate before entering my old turf.
His nurse motions me toward her. Blue plaid curtains are pulled around him, leaving only a small opening to enter. After a brief prayer, I part the curtains, enter the cubicle and scan his face noting his color, a pale pink, his slightly cracked lips, and the hum of a bedside ventilator assisting his breathing. I begin counting the catheters starting at his neck. I’m on number five when the nurse, who I’ve known for years, rattles off a complete report, filling me in on the intake, output, pain medications, ventilation settings and current vitals.
I find his hand and place it in mine. “Squeeze my hand if you hear me,” I tell him as if I am his nurse. He wraps his fingers around mine. I lean over to kiss him on his forehead and somehow I know everything will be alright.
Esophageal Cancer 101
I pictured the progress of my husband’s disease as a gathering of dark clouds that closed off any avenue of light, clusters of heavy, tentative drops, a downpour held in suspension for months……
I’m wide awake at 0530, thinking about my husband and wondering how he’s doing. It’s exactly eleven hours since his surgery and eight hours since I last saw him. I switch on the light next to my bed and reach for a folded white sheet of paper on my nightstand. The extension for the ICU is written in pencil with the name, “Mindy” printed on top. I dial the number on my cordless hoping for a detailed report from the night nurse. I don’t like surprises.
“Your husband is doing fine,” she says. “The doctor extubated him an hour ago and he’s resting comfortably.” I let out a sigh of relief. The fact that Michael is able to breathe on his own gives me some degree of hope.
I don’t leave the house until 0830. Morning chores in preparation for Michael’s return take precedence. I take time to eat a nutritious breakfast, walk a mile with the dog, and prepare my mind for what’s to come.
Standing outside of Michael’s hospital room, I brace myself before I open the door. “Inhale, exhale,” I whisper while taking an additional cleansing breath and reciting a short prayer. I stand on my tiptoes, leaning my face against the glass window as I peer into the room, hoping to catch a glimpse of him before entering. I walk toward his bed and gently slide the paisley curtains back to one side. My husband’s body is covered with a cream colored blanket; his head is elevated and his eyes are closed.
The nurse fills me in on his current condition. “Your husband’s vitals are fine, his lungs are coarse, but that’s to be expected. He’s receiving respiratory treatments around the clock.” Michael stirred and I glanced in his direction. He opened his eyes and in a hoarse voice said, “Hello.” He pointed his left forefinger at the nasal gastric tube inserted in his right nare, “I’d like this out.”
“Its purpose is to drain the gastric contents and decompress your stomach,” I told him. “The doctor will remove it when it’s time.” I had hoped my explanation might alleviate his anxiety and allow him to cope with the multiple wires, drains, and machinery he was connected to.
As an RN, I wasn’t sure about my role and kept switching from ‘wife’ to “nurse.” I’d glance around the room, silently verifying his vitals: blood pressure, respirations, oxygenation, and insuring all connections were intact before pulling up a chair and once again becoming his wife.
My routine stayed the same for five days. I’d visit Michael in the hospital from 0830 until 1000, work at the hospital until lunch, visit him at noon, finish up my work day, and return to Michael’s room until visiting hours were over. My schedule never deviated—rigid structure became a necessity—a way to control an otherwise unmanageable situation.
The nurse, nutritionist, and case worker began preparing us for the homecoming two days before discharge. Michael’s depleted energy level and intermittent gastric pain required short naps in a recliner and round-the-clock medication. We continued his night tube feedings and adjusted to a regiment of six small meals a day. We were now on his diet, a typed list of “do’s” and “don’ts” to eat. Forget about hamburgers, spaghetti, or tacos; we were gearing up for a diet of puddings, bananas, applesauce, eggs, hot cereal, and any other foods with the following criteria—soft and mushy. Energy drinks lined up like miniature soldiers along the door of the refrigerator and cartons of ice cream and yogurt filled the freezer.
Home sweet home
Michael’s recuperation took weeks with progress noted each day; after four days his tube feedings were discontinued since he was able to hold down table foods. After the first week, he slept in our bed, his head resting on a 30-degree wedge pillow. As for me, I was able to sleep soundly with my hand intertwined in his, listening to my pillow speaker till the wee hours of the night, no longer needing to adhere to my strict routine, gaining a bit of control over the situation at hand—believing, once again, that we had a future together.
Esophageal Cancer 101
The Facts—just the Facts
In November of 2008, my husband, Michael, underwent a surgical procedure for esophageal cancer—a transhiatal esophagectomy (THE), which in lay terms means “removal of the esophagus.” Before you gasp just thinking about having three-quarters of this useful muscle removed, it should give you some comfort to understand that it’s being replaced by a portion of the stomach. I know you’re wondering how it’s possible for a stomach to replace an esophagus, so let me explain.
The surgeon, or magician, as I like to call them, moves the stomach upward through the hiatus and into the chest until its upper end appears in the neck wound. The remaining esophagus is then connected to the stomach. The surgeon leaves a small portion of the stomach to function in its normal capacity, although I hesitate to use the word “normal” as there isn’t anything normal about this surgery.
It’s all about Nutrition
Fulfilling daily nutritional requirements can be difficult for a healthy person, but after undergoing a THE, it’s becomes a huge challenge. Weight loss is an automatic 20 to 30 pounds after surgery and don’t count on the pounds returning anytime soon. The key to alleviating some of the digestive discomfort is the following:
- Introduce foods into your diet gradually, as milk or chocolate products may not be tolerable.
- Eat smaller meals frequently during the day.
- Pack a power bar, vitamin protein drink, and a bag of trail-mix.
- Eat slowly, chewing each morsel of food. If you overeat, an uncomfortable feeling of fullness will devour your insides and you’ll spend the next hour groaning on the nearest sofa.
- Drink liquids before or after meals—not during.
Last Christmas, a month after Michael’s surgery, we were at our son’s house for a family dinner. I watched him as he ate a thin slice of chocolate cake slathered with a thick layer of fudge frosting. Half-way through his desert, he said, “We need to leave—now.” His facial features grew tense as he said his goodbyes and walked out the front door toward the car. I asked him if I should drive home. He nodded his head, handed me the keys and in a weak voice said, “My stomach feels like it’s on fire.”
When we arrived home, I helped him to the couch and set my parameters. “If you’re not better in twenty minutes, we’re going to the hospital.” I gave him a dose of his prescription pain medication hoping it might alleviate some of his discomfort. Within fifteen minutes he turned to me and said, “The pain is lifting.”
Michael’s discomfort disappeared within the next thirty minutes, as did the word chocolate from our shopping list. The next word to be carefully considered was ‘sugar’ as in cookies, muffins or other sweet treats. This consideration had more to do with timing than anything else. All sweets needed to be consumed after a meal, never as an in-between snack. Michael learned this the hard way when we stopped at a restaurant for a quick pick-me-up, as he calls it—a cup of coffee and a muffin. An hour later while shopping for groceries, my husband displayed the following symptoms:
- Sweating profusely
- Weakening of extremities
I promptly found a chair for him, grabbed an energy drink from our cart, twisted open the cap and handed him the bottle. Within a few minutes, he felt better. This experience was a direct result of a low blood sugar created by the surgical procedure.
Drastic diet changes aren’t ever easy to adjust to—especially in our adult years. Michael and I used to think of dining as a way to relax and socialize while treating ourselves to delicacies and tantalizing meals. It’s difficult to continue that mindset while one’s faced with constant food restrictions and stomach upsets.
We no longer meet our friends for gourmet three-course meals, highlighted with a light and fruity Pinot Noir. We’re now happy to enjoy an appetizer, if it’s not fried, split a main course as long as we agree on the entree, and substitute sherbet for ice cream. We’ve adjusted nicely to our different lifestyle, even if it does mean spending hours cooking in the kitchen, finding new recipes, reading food labels, and learning to enjoy a simpler existence. It’s one of those life changes that seem small in the scheme of things.
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