Welcome to Your Cancer Journey in Ten Short Lessons

By Neil King Jr.

You are sitting in a fluorescent-lit room, maybe alone, maybe with a spouse or friend, when the doctor grimaces and says the word cancer. You take in what follows—the blurring of vision, the squeeze of your wife’s hand, the seriousness of the diagnosis, the recommended course of treatment, maybe even some mention on your survival odds.

But you can absorb only so much. You walk out into the world, as I did after I got my news of stage three esophageal cancer in the late summer of 2017, dazed and mute—the first steps of a journey none of us is prepared to take. Advice will flood in: Get multiple opinions. Seek the best doctor. Think of going to a hospital that specializes in your condition. All that is good. My own expedition, miraculously now into its sixth year, has left me with a few morsels worth passing along. 

I have given all of this a lot of thought–years of thought, actually. But the gist of what I convey here is truly for the newcomer, the mere innocent, the one fresh to the land of horrors and wonders that is a cancer diagnosis. So much of it derives from what I learned in the first six months, when you go from being a wide-eyed and terrified naif to–if you are lucky–a calm and grizzled master of your own case. A wise soul, sword at your side, ready for all comers.

The Ten Lessons

  1. Keep it small. Your first instinct upon receiving a grim diagnosis is to Google it and see how long you will live. Resist that temptation. You truly are your own case with your own specifics, genetics, support web, will to live, and all the rest. Fight to keep that perspective. Wallowing in the dire statistics across some vast set of patients of all ages, walks of life and degrees of fitness will make you neither wiser nor hardier of spirit. Keep your eyes fixed on the nearest of horizons. Immerse yourself in the details of your own situation and eschew all the rest. I designated my wife as the household Googler and told her to tell me the less-welcome tidings as I needed to know them. She excelled as my personal filter and spared me a lot of early grief.
  2. Be vigilant. The less you focus on the illusory big picture of five-year survival rates, the more time you will have to focus on your own case. It is imperative that you be your own case manager and not delegate that to your doctor, a nurse, or any one professional. The point is not to distrust the many physicians you will face, but to listen attentively to what they say, call them on discrepancies, nudge them for better explanations. The more astute you are about your own case, the less likely that mistakes will be made. Medicine, and oncology in particular, remains a highly human science where hunches and intuitions matter a lot. So sign up to your hospital’s online portal and take your own records seriously. Learn the language. Study up on the many types of chemotherapy, the latest trends in immunological drugs, the clinical trials, all of that. Reading your own radiology reports may not be for the faint of heart, but it does give you a leg up and helps assure important things don’t go unnoted. I went even further, gobbling up books on the history of cancer, like the incomparable Emperor of All Maladies, and perpetually asking questions of nurses, doctors, technicians. The whole of it sparked a boom in my curiosity about the medical world and our centuries-long quest to understand and conquer this twist of fate we call cancer. But I’m a journalist and a glutton for information. Not everyone is going to want to do that. 
  3. Have other ears. Keeping track of the complexities, the terminology, the flood of information from various doctors can be nearly impossible. Bring along a second set of ears for the big conversations. Even better, have that other listener take notes. Some important doctor conversations I have recorded on my phone and gone back to for guidance or added clarity. That has been highly helpful, in part because so much flies over our heads or is forgotten three days later in the blaze of events. And along the same lines, keep a personal journal. The one I began the day of my diagnosis now runs to hundreds of thousands of words–literally the stuff of multiple books. I began that account the minute I arrived home that day in August, creating a Word document and calling it The Diary of a Thing. That diary has not only left a detailed account of my odyssey over all those years, but has in its own right changed how I write and how I view the world. It has become a vast chronicle of the sorrows, the joys, the highs and lows and moments of intensity I wouldn’t have otherwise. Such is how cancer itself can deepen and improve your life. But more on that in a second.
  4. Slow down. It may seem obvious that patients need to be patient, and not just because you will be waiting in a lot of waiting rooms to see a lot of doctors. You are about to go through a multitude of stages of grief, sorrow, acceptance, anger, enlightened stoicism, grief again, more acceptance. They each have a purpose. In months you will be astonished at your past phases of anger or sorrow. You will have grown. You will have hardened and grown flintier. You will have grown wiser. You will have seen your capacity for kindness and love deepen as you receive the kindness and care from so many others. You are on a journey to heal but also to learn. Give it all time–one step at a time.
  5. Just walk through it. A friend who had gone through his own cancer travails offered me solid advice early on. Read Admiral James Stockdale’s essays on Stoicism, he said, about how that quirky warrior/scholar girded himself for years of imprisonment and torture after he was shot down over Vietnam. It sounded like odd advice, but I found it useful. Stockdale’s dictum, based on his own immersion in the Roman Stoics, was basically: Focus on what you can control, what is within your own powers, and let go of all the rest. There is abundant writing in this sphere, going back to the ancient Romans, and of course much to be gleaned along similar lines from many Christian or Buddhist mystics and thinkers. My personal doctor, a true savant in her own right, put it differently. “Just walk through it,” she said. “No matter what happens, just keep walking.” In other words, keep your eyes fixed forward. Concentrate on the moment. Don’t get distracted by distant threats. Stand up straight. Savor what you have. Just keep going. This isn’t always easy, but the more you focus on what you can control, and bat away the rest, the calmer and stronger you will be. This deliberateness, for me, has only increased over time. It is another of the great lessons that my encounter with cancer has taught.
  6. Be open to beauty. Being told grim and potentially fatal news opens the eyes and gives potency to passing moments. Take advantage of the added sensitivity. Nothing makes the world more vibrant, more luminous, than seeing it after a long stretch in a hospital bed, or a day in the chemo ward. I went through my first bout of treatment in the fall of 2017, and became as never before a devoted aficionado and lover of trees and their stubborn strength and majesty. Their aspect in each season spoke to the world’s continuity and strength. A spoonful of red pepper hummus when I got home from surgery remains a sensation I will never forget. In the fall of 2019, during my second round of intense treatment, I watched the rowers on the Potomac every morning for weeks as I crossed Washington’s Key Bridge to Georgetown Hospital. A week after that treatment ended, I hiked to the bottom of the Grand Canyon and dove into the Colorado River. Two years later, I walked out my front door in Washington DC for a month-long stroll to New York City that was punctuated by true moments of rapture that hit me at the most unpredictable of times. All of those moments, from the first day of my diagnosis, were explosive in their beauty. Intense moments of active appreciation, no matter how small or how passing, can brighten dark days. Be attentive to those moments and nurture them. They are among the true gifts of the grim slog that is any cancer struggle.
  7. Steel yourself to others. Some friends and family—even strangers—will excel at offering support, love, consolation, rides to the hospital, all of that. You will find angels you never knew existed. All the fingers on both hands are too few to tally the incredible nurses I have met along the way, nurses who offered the best of care in moments of delirium or despair. People who truly cared for me, tenderly, lovingly, and who I wouldn’t have recognized on the street a week later. Many others in your life, even the majority, won’t know what to say or do in response to your challenges. They will be at a loss for words, or worse. They will heap you with sympathy when all you want is to go have a beer. You will witness new forms of awkwardness you never knew existed. Even good friends will come off as indifferent and uncaring. Try to pay it no mind. From the start I told myself not to judge how others responded. It helped to recall how oblivious I had been around friends during their own times of need. The chasm between the well and not-well can be wide, and hard to bridge. Embrace the best-intentioned gestures and forgive the rest. There, too, just walk through it.
  8. Find fellow travelers. A caring spouse, sibling, friend or parent can make all the difference. But nothing beats a posse of trusty allies who are fighting the same fight. I have built up a network of friends in multiple states, some further down the road than me, others much newer to the battle. We crowd source. We share intel and tips. We listen to each other tell of triumphs or setbacks. We gather for lunch when we can, either a couple of us, or more if possible. And when we worry we may not see another summer, we talk of that, too, in ways that are harder with your spouse, friends or kids. Ours is a shared language and fluency not easily found anywhere else. Yes, there can be grief in this as well, because some of these fellow riders won’t make it. I have seen too many of my early allies taken down, too often briskly, shocking me anew at how humbling this fight can be. But their strength, love and counsel stays with me still.
  9. Push yourself. Cancer treatment can be brutal. The roster of potential side effects to chemo or radiation run to many pages long. Most foods can become revolting. Chemo can suck the life from you. It can take months to recover from surgery. Rest, patience, taking the time to regain strength—all of that is important. But there is a risk, too, of taking it too easy, of becoming too much of a patient, of giving in to the painkillers and the couch. I weathered my second bout of chemo and radiation far better than I thought, in part because I forced myself to walk the final mile each way to the hospital across a bridge that spanned the Potomac and then up the hill to Georgetown. Often, heading back from chemo over that same bridge, I could barely lift my head to take in the river, but the movement itself was an expression of freedom. More recently, now facing a third recurrence, I walked the whole of the five miles to Georgetown for a series of five targeted brain radiations over nine days–again, to stretch the lungs, the legs and the mind. Exercise won’t cure you, but it will help make you stronger and more resilient, and it will keep you in the world, on your feet and breathing fresh air. 
  10. Don’t be sick. Cancer can lay you flat. It can humiliate you and sap you of spark, joy, hope, and life itself. But as much as humanly possible, don’t let it define you. Don’t let it own you. Take what it teaches–your love for others, the vital importance of the moment underfoot–and spread that more widely. Respect cancer’s evil virtuosity, its dastardly flair for change and survival. But be an equal in the fight. Be a warrior apart. 

Neil King Jr. is the editor of Gotham Canoe and the author of American Ramble: A Walk of Memory and Renewal. He’ll never say he is a cancer survivor, but only that he is surviving. When not at home in Washington DC, he is very happy to be elsewhere.