What It's Like: The Year I Was Diagnosed with Esophageal Cancer
“We found a mass in your esophagus,” my GI doctor said as I woke up after an endoscopy. My heart sank, and my stomach lurched, as I tried to absorb the shocking news. What does this mean? Is it cancerous? After an agonizing five days, I got confirmation. It was a malignant tumor —esophageal cancer.
By the next week, my husband and I were driving to New York Presbyterian Weill Cornell Medicine every day for a series of tests and meetings with the surgeon, oncologist, and radiology oncologist. Unreal.
Before my endoscopy, I could have never imagined hoping that I had Stage 3 esophageal cancer. The cancer was advanced but hadn’t spread. It was concerning but containable and curable. I was told that the process would be difficult but doable. My treatment plan was put in place: daily radiation for five weeks, weekly chemo treatments, a pause, and then surgery followed by immunotherapy. Was this really happening to me? I still couldn’t believe it. I began to mourn the beautiful vacation my husband and I had planned to Iceland and then to Oslo for a Bruce Springsteen concert. I worried about what my diagnosis meant for work. Would I be able to carry out my duties during treatment? Could I attend my largest professional event of the year?
Learning that I had esophageal cancer was a profoundly isolating experience despite the outpouring of love and support from family, friends, and colleagues. It’s human nature to want to fit in. This cancer diagnosis squarely made me an outlier. I appreciated the sympathy, but few could empathize with me. I didn’t want to be pitied. I couldn’t handle that.
Typical esophageal adenocarcinoma patients are older Caucasian men who smoke, are heavy, and heavily drink. How was it possible that I was diagnosed with esophageal cancer at age 52? I didn’t smoke or do drugs, drank in moderation, and exercised regularly. I have always been fearful of breast cancer because it runs in my family. Esophageal cancer seemed so esoteric, so foreign. So unfair. If I exhale, I thought, I will unravel.
If I were a religious person, I might find solace in beliefs such as, “It’s a test” or “It’s meant to be,” in the tradition of the biblical Book of Job. But I don’t ascribe to a higher power, which makes trying to answer the question of, “Why did I get cancer?” impossible to answer. And yet I kept asking myself that question. It’s the reason people in adverse conditions often mistake the title of Harold Kushner’s book “When Bad Things Happen to Good People” for “Why Bad Things Happen to Good People.” Ultimately, there is no answer.
Perhaps it would be easier if I had faith, a belief, and an understanding of why I’m on earth and why I was handed these tribulations. An explanation for why I got cancer. But I can’t coerce my belief system to fit the crisis. I suppose I can take solace in knowing what I don’t believe in.
Like Dante’s Circles of Hell, there is a special place for each phase of cancer treatment. The anxiety about what to expect from chemo — will my hair fall out and will I be constantly nauseous? Luckily, I was not struck with these afflictions thanks to cold capping and medication. Yet I didn’t anticipate passing out as the chemo hit my veins for the first time. Radiation didn’t give me a sunburn, but at the end of the treatment, it gifted me with a heavy shroud of fatigue and pain swallowing. Difficult but doable.
And then the mental strain: waiting for test results. Did the tumor shrink or spread?
Hallelujah, after five weeks, my tumor shrunk significantly, and I was primed for surgery. But wait, surgery? My anatomy was about to change as the surgeon cut out my esophagus and pulled up my stomach to replace it. I had never even spent a night in a hospital, and I was about to undergo an intense seven-hour operation, followed by a 10-day recovery, first in the ICU, and then in the step-down hospital unit.
Upon waking up in the ICU I remember speaking, and then it slowly dawned on me that I could not move on my own because I was laden down with two drainage machines and a jumble of wires and tubes. I am in awe of the hospital nursing staff––their professionalism and kindness. I looked like a freak show, but they treated me with dignity and compassion. It takes a special type of person to go into nursing.
The hospital has its own heartbeat: from the mobile weigh-in and x-ray at 5 a.m. to meds being administered every four hours. Each morning I felt like Madame DeFarge, minus the knitting needles, as I positioned myself in a chair, ready to receive my slew of medical visitors––doctors, nurse practitioners, dieticians and chaplains. The beeps, the smells, the pokes and prods, stitches and scopes, the hectic feeling during the day to the eerie quiet at night after the shift change. I soon appreciated the simple greetings and kind words. They were my source of sustenance.
Did I feel relieved once the surgery was complete? Of course. Did I also feel like a truck ran over me? Yes. Recovery after surgery has been slower than I anticipated. The back pain that flares up every few hours, probably from sleeping on a steep incline on my back, is the main culprit. Discharged from the hospital heralded freedom. Yet now I was responsible for my own regimen of medication, which almost ran around the clock. Night after night of fitful sleep for both me and my husband.
And then there was the feeding tube to contend with. My doctor explained that during surgery, a jejunostomy tube, a red rubber catheter, would be placed through the skin of my abdomen into the midsection of the small intestine. It would stay there for up to two months. The purpose was to deliver nutrition until I could eat enough calories by mouth to maintain my weight. Was it frightening to learn that I would have a feeding tube? Yes, but at this point it was one more invasive element on this heinous journey. I was told that it would not be painful and that helped me absorb the news and calm my nerves. My husband and I mastered how to hook up and unhook the feeding tube, but never grew fond of it. The doctor was right––there was no pain, but I was constantly aware of the tube hanging out of my stomach and more than once the cap fell off, unleashing a yellowish flow of liquid. My tube was removed five weeks after surgery and I immediately felt untethered, both physically and emotionally.
Recovery is not a moment in time but a continuum. It’s a rocky path filled with loose gravel and my new reality will take getting used to: eating six small meals during the day to keep my calorie intake up and gauging when I’m full to avoid the dreaded dumping syndrome––when food moves too quickly from the stomach into the small intestine resulting in nausea and diarrhea. Limiting sugar (this one is hard!). Will I ever be able to drink coffee or enjoy a glass of wine again? Sleeping at an incline and waiting at least two hours after dinner to lay my head down to rest.
These are the physical incantations of my journey. The emotional ones are still under review. Going out to eat with friends, my main mode of socializing will be odd. My intake of food will be limited so as they enjoy the progression of dishes and wine, will I be able to contribute to the vivacity of the evening? What does this mean for my social life and mental well-being?
Soon I will embark on the next phase of this journey: immunotherapy and follow-up scans.
I know I am lucky. I braved getting an endoscopy, which caught the malignancy in time. I can fester in my frustration and express my angst by focusing on all that I’ve missed out on this year. I know better though. But I don’t want to be sanctimonious. In addition to loss is absence. How I wish my mom was still here to hold my hand and nurture me now.
Throughout this experience I have felt grateful and blue: grateful for the overall prognosis and blue because of the intense disruption and anxiety this illness has caused me, my family, and friends. I am forever thankful for my husband who is everything to me and for the love and support I have in my life. Difficult but doable.
One question—when can I exhale?