This article is published in the Sickness & Health issue of The Mockingbird magazine, set to hit mailboxes next week.
There is nothing remarkable about being a cancer patient: more North Americans get this diagnosis than a college education. I’m sixty-nine-years old and have lost many friends and acquaintances to cancer; I had a day recently when I learned of two such deaths.
… and following came
Such a long train of spirits, I should never
Have thought, that death had undone so many.
(Dante, The Divine Comedy, Inf. 3.50-52)
The City of Cancer is the liminal space between the Republic of the Healthy and the Kingdom of Death. It has a gate on which it is carved, “Through me, you pass into the city of woe” (Inf 3.1). That gate is the diagnosis.
On July 2, 2020, I started coughing blood. I’d been having throat pain and difficulty swallowing for months. I am a psychologist and a medical school professor in Ottawa, Ontario; my wife is a psychiatrist and professor. We knew what these symptoms could mean. But I could not get a diagnostic assessment because the pandemic blocked face-to-face medical appointments. I called my family physician and described the blood when I coughed. He sent me to the Emergency Department.
I arrived at 3:00 PM, and it was standing room only. At 8:00 PM, I was examined by a young doctor in training to become an emergency physician. He looked in my throat, said medical words that translated to “Uh oh,” and ordered a CT scan. I was scanned a few hours later and sat in the waiting room until 3:00 AM on July 3. I was called to an exam room, and a senior doctor came in. She said directly but quietly, gently, and gracefully, “I have serious news.” I was coughing blood because a tumor had broken through the tissue lining the inside of my throat.
Getting the diagnosis was the beginning of a difficult journey. In the Journal of the American Medical Association, Samuel Auger wrote:
The emotional and physical stress on patients with head and neck cancer through diagnosis, treatment, and surveillance can be immense, and greater than that experienced by other cancer survivors. Rates of suicidality are twice that of other patients with cancer, triple that of the general US population, and increasing.
I am a Christian, but I have always been reluctant to pray for myself, believing that I have received more than I needed or deserved. When I got the serious news, praying did not occur to me.
Modern medicine, when done well, engages patients in making decisions about their care. Meeting with several cancer specialists, my wife and I threw ourselves at the question of what should be done. My tumor was far back in my throat, at the base of my tongue. That location meant surgery was not the first treatment option because it could kill my tongue. Instead, the standard treatment is to burn the tumor with focused radiation and poison it with one or more potent but highly toxic chemotherapeutic drugs. This combination has an 80% 5-year survival rate for cancer like mine. Let’s be clear, though: chemotherapy works by killing cancer cells faster than it kills you. Among the many side effects, there’s a risk of “chemo brain” — significant and persistent cognitive impairment. I agreed to the radiation but declined chemotherapy, which dropped my survival chances to 75%. My decision surprised my doctors.
***
Why accept an additional 1 in 20 chances of dying?
My wife describes me as “relentlessly mission-driven.” That mission is to improve child and adolescent mental health and, to that end, to understand why the healthcare system so often fails to help kids in trouble. I wasn’t always this way. I graduated from college in 1976, blinded by depression and writer’s block. The university gave us our degrees and opened the gate to the world, and I tumbled out face-first. I didn’t just lack direction; I lacked the sense that life had directions.
There wasn’t a moment when that blind young man found direction; there were many. I took a minimum-wage job as a childcare worker for institutionalized mentally ill children. I woke from a nap in my girlfriend’s apartment and found John’s Gospel on her bookshelf. I read the first chapter and the light did not dawn, but the horizon warmed just a bit. After several years of rank-and-file mental health work, I saw that the Freudian doctors at the hospital were guided by theories, not evidence, and that the kids weren’t getting better. I left therapeutic childcare and went to graduate school to find methods for caring for sick children that worked.
Fast forward to the mid-90s, when I was a professor. It was 2:00 AM in my office in a vast American hospital. There was a blizzard. I was writing a research proposal due the next day to the National Institute of Mental Health, and I set out to look for coffee. I crossed an aerial bridge connecting two buildings, three stories above the street, a quiet glass tunnel of warmth and light. Ahead of me, orderlies pushed a gurney, transporting an apparently comatose girl to some urgent procedure. Her parents trailed them, enduring what looked like the worst night of their lives. I had young children, and the scene terrified me. However, the parents’ grief also testified to how much children’s healthcare can matter. Why, in 2020, did I decline chemo? One reason was that I feared I might be cured but lose the mental acuity to do scientific work in the cause of children’s health.
That’s the flattering way to frame my decision. John Calvin said that “man’s nature … is a perpetual factory of idols” (Institutes of the Christian Religion 1.11.8). Scientific careers offer many false gods, starting with the worship of (what you imagine to be) your own ability. Tenacity in the pursuit of excellence is likewise a false god. This is true even if you pursue excellence to win your own approval rather than for the acclaim of a crowd. The point is to seek the truth. A career of climbing steep learning curves fired me in a kiln, transforming me from a depressed adolescent into a focused adult. But struggling with difficulty became an addiction. Marriage and children tempered this; love partially displaced struggle at the molten core of life. Nevertheless, I declined chemo to safeguard my abilities, so I could continue the struggle. Getting better at hard things was my only way to live.
S. Billie Mandle, Untitled No 1 Stellar Skytron Surgical Light. © S. Billie Mandle.
Radiation was a hard path. Five days a week, for seven weeks, I lay with my head inside a large machine that targeted high-energy radiation at my tumor. My head was held still by a rigid mask covering my head, neck, and face. I had to master the fear this induced. My head needed to be still so that high-energy beams could be precisely aimed to intersect at the tumor and burn it out. Unfortunately, these beams must pass through my neck to reach the tumor, damaging the surrounding flesh. The radiation killed most of my saliva glands and taste buds. I couldn’t taste anything, but that didn’t matter because my throat was blistered, and I couldn’t swallow anything. A tube was inserted through my nose and down my throat past the tumor site, and I learned to feed myself by dangling bags of liquid nutrition from an IV pole. Between cancer and the treatment, I lost 40 pounds. Then it was over, and in a few months my ability to eat and taste mostly returned. The initial scans suggested that we might have killed the tumor.
Until they didn’t. The throat pain came back. Worrisome CT scans were confirmed by a dire result from a biopsy. Resilient and militant, my tumor was on the march, and we needed a new treatment option. The cancer center scheduled a meeting with the surgeon who had confirmed my initial diagnosis.
The night before I was to meet with the surgeon, I thought through the likely treatment options. Radiation was out of the question. I had just endured as much as I could stand, and it didn’t work. I assumed the next step would be surgery. I knew, though, that my tumor had spread to the center of the root of my tongue and cutting it out might kill my tongue. If so, I could lose the ability to speak and be forced to feed myself permanently through a tube. But I was ready to take these risks. Even in the worst-case surgical outcome, I would still have a life I greatly valued. I would have more than Stephen Hawking did; if he could write, so could I.
The universe laughs at our pretensions; I didn’t get a chance to demonstrate how bravely I could face the risks of surgery. I was too optimistic about my situation. Here is the gist of our conversation:
Surgeon: “I’ll review your options. First, there is palliative care.”
Me, silently: What?
Surgeon: “Second, there is medical assistance in dying.” (This is called physician-assisted suicide in the US. It’s legal in Canada.)
Me: “That’s not an option for religious reasons.”
Surgeon: “I understand. I mentioned these options first because we do not have much to offer regarding treatment. As you know, you can’t have additional radiation. Neither the radiation oncologist nor I think chemotherapy benefits you at this stage. But I will arrange an appointment with a medical oncologist to discuss palliative chemotherapy to temporarily shrink the tumor and make you more comfortable. Now let’s talk about surgery.”
I said that I understood that surgery could entail the loss of speech and my ability to eat. But if I could be with my family and write and do science, that would be acceptable.
Surgeon: “And I would support that view. The problem is that the surgery would also damage your epiglottis, which protects your lungs from infection. You would experience repeated pneumonia, requiring hospitalizations, one of which would likely kill you. And for all that, it would only offer you a slight chance — perhaps 10% — of a cure. I would be happy to help you get a second opinion on surgery.”
Oh.
Surgeon: “I know this is difficult to hear.”
Me: “How long?”
“Months, not years.”
***
My wife and I pursued a second opinion across borders and through despair. Eventually, I got access to a novel immunotherapeutic drug in Ottawa. The drug rarely works for my type of recurrent head and neck cancer, but it seems to have stalemated my tumor. Hence the surgeon was wrong: 18 months later, I have outlived his prognosis. But not that wrong. The HR form signed by my medical oncologist states that I have “incurable cancer.” At our last meeting, he remarked, “You know, I have never had a patient who has lived as long as you on this drug,” implying that none of the others had survived even a year. My death isn’t imminent; however, it’s moved into our spare room.
I value these physicians’ candor. Martin Luther said proper theology “calls the thing what it actually is.” Brad Stuart and Rena Awdish, leading palliative care physicians, argue that end-of-life care must reflect an evolution of hope. The initial phase, “focused hope,” centers on a cure. If this becomes unattainable, focused hope degenerates into a false hope that promotes ineffective, often harrowing treatments that may shorten life relative to what care aimed at comfort may offer. To avoid this, physicians must speak honestly, and patients must be ready to listen to what they say. Getting clear of false hope prepares you to look for true hope.
Sometimes what you learn demolishes your beliefs and changes everything. You lose your job while a child is on the way. You have lunch across the street from a skyscraper, and the following week you watch terrorists knock it down with airliners. Luther wrote the following to his patron, the deathly-ill Elector John of Saxony:
[Suffering] is the school in which God chastens us and teaches us to trust in him so that our faith may not always stay in our ears and hover on our lips but may have its true dwelling place in the depths of our hearts. Your grace is now in this school.[1]
What do they teach in the Elector’s school? Acquaintance with death deflates the self. I climbed rugged paths partly because the struggle confirmed my sense of virtue. That was no refuge when the storm hit. Scientific projects take years, so you are always looking toward far horizons but not so far enough ahead that you can see your own death. When you hear “months, not years,” it’s as if the horizon has suddenly rushed toward you. Of course, there’s still a future, but it is our future without being my future. My life’s meaning had been tied to projects that require years, so where am I when I no longer have years?
Spot Illustration: Lucy Haslam
I still have a mission — wherever you are, look around; there’s always something you can do — but the agent behind the mission can’t be me. The hope — the faith — is that God will bring Creation together at the end of time and complete the overthrow of death. But even if this is true, and whatever it means, now is not that time. Luther, from his Heidelberg Disputation: “It is impossible for a person not to be puffed up by his good works unless he has first been deflated and destroyed by suffering and evil.” A career in science was a gift from God, a path to follow, and a way to love him and my neighbors. However, the center of my life should always have been love, not struggle. Pursuing virtue is a means to that end, not the end itself.
Hope in the liminal City of Cancer begins with the truth about what is. Suffering has a tangible certainty. Luther wrote that “God desired to be known in suffering,” and there is no knowledge of God without suffering.
One dark evening, I walked through a hospital parking lot. Ahead of me was a pickup truck. A man in the passenger seat was vomiting into a bag held by a woman, presumably his wife. His complexion was like freshly poured concrete; he vomited repeatedly. Whatever journey they’d taken, they’d arrived at chemotherapy. His wife closed the bag and gave him a fresh one; this wasn’t their first time. She could never have been so beautiful at her wedding as she was that night, with bags of vomit, delivering on the marital promise that matters. Luther again: “It is not enough for anyone, and it has no benefit to know God in glory and majesty, unless that person knows Him in the humility and shame of the cross.”
I have become “like a desert owl, an owl among the ruins” (Ps 102:6). The clear sight of imminent death opens a door. You may get faith in “its true dwelling place in the depths of our hearts” if you see things as they are.
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COMMENTS
4 responses to “In the Elector’s School”
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What a moving reflection of reality and the clarity that only suffering brings. So much wisdom here. Thank you.
Thank you, Bill, for these words of eternal comfort and wisdom. This is one to bookmark & return to.
I’m going through this with my wife right now as the caretaker; she has stage 4 stomach cancer and is fighting for her life right now. Thanks for sharing this.
Thanks, Bill. My son follows you on Incidental Economist and told me you were sick. I found this, and it is wrenching and wise. Thinking about you with fond memories and love.