Lessons Learned About Dying from a Dying Son, on World Cancer Day 2020

World Cancer Day 2020 by Karen Burton Mains

Years ago, traveling around the world in the role of a journalist at the invitation of the director of an international relief organization, we stopped to visit Mother Theresa’s Kalighat Home for the Destitute Dying. I will always remember, as have other journalists before me, particularly Malcolm Muggeridge, the soft light that embraced the building and the unusual peace. The calm in the eyes of the Sisters of Charity. The rows of cots with emaciated bodies on them. Brown eyes looking into the distance. The feeling of being poised at some edge. Mostly, I remember the enfolding light. The light.

By the time our son, Jeremy Mains, was rushed to the local hospital’s emergency room, his bone marrow was filled with cancer cells. I noticed that April of 2013 that he had seemed unusually tired, but I chalked it up to holding down several part-time jobs and being a highly involved father of three small children, which entailed sharing home responsibilities with a working wife.

[World Cancer Day 2020] By the time our son, Jeremy Mains, was rushed to the local hospital’s emergency room, his bone marrow was filled with cancer cells.
With my son, Jeremy. In every way through those months of hospitalization, I watched my son become diminished and dissipated and subjugated and disconnected. To my great regret, I did not offer my son this opportunity of end-of-life discussions.
Eventually, his wife, Angela, persuaded him to see a general practitioner, suspecting mononucleosis; fatigue, swollen lymph nodes, stomach pains. Why not? After all, one of his jobs was that of an adjunct professor teaching Spanish to students at nearby Wheaton College. Plenty of Epstein-Barr Syndrome circulating around there.

However, when the GP phoned Angela with an urgent message that bloodwork results indicated that Jeremy should go immediately to Central DuPage Hospital’s ER, our son had already been admitted, his kidneys shutting down. He was quickly diagnosed as suffering from an acute form of a rare lymphoma. Quickly, he was transferred to the oncology unit of Rush University Medical Center in downtown Chicago.

Medicine and the End of Life

I wish I had read Atul Gawande’s Being Mortal before our son, Jeremy, died at age 41 of acute blastic mantle-cell lymphoma. Gawande’s book is subtitled Medicine and What Matters in the End and is a practicing surgeon’s deeply affecting journey into examining how medicine can do better facilitating the last months, weeks, days and minutes of a patient’s life.

In order to write about this topic well, Gawande follows a hospice nurse on her rounds, visits with a geriatrician in his clinic and dialogues with people reforming nursing-home practices. Then he interviews patients and the elderly as to how they want to frame their last days. His conclusions are pertinent for all who face end-of-life scenarios, whether through disease or old age.

Gawande writes,

“Two-thirds of terminal cancer patients in the Coping With Cancer study reported having no discussion with their doctors about their goals for end-of-life care despite being, on average, just four months for death. But the third who did have discussions were far less likely to undergo cardiopulmonary resuscitation or be put on a ventilator or end up in an intensive care unit. Most of them chose hospice. They suffered less, were physically more capable, and were better able, for a longer period, to interact with others.”[1]

The Listening-Group Experiment

At this time, I and a handful of friends, all of us with decades of ministry experience behind us, were testing the concept of listening groups. Eventually, over the course of eight years, I would lead some 250 listening groups, the majority with three to four participants, meeting once a month over seven months. The listening groups were trialed in various other settings—one a weekend retreat with 90 attendees; another, a group of 26 people we took on a tour to France. A pastor friend experimented using the listening-group model with his church staff—with great success, he reported to me. The architecture of the listening groups that my friends and I were testing surprised us with how quickly the group members felt safe with one another.

The format was built around a listening structure that ensured space and time enough for each of the participants to feel not only heard but understood. A gentle discipline maintained that the response to each one who shared could only be in the form of a question, and that could be asked only when the person sharing was finished with what he/she wished to say. This eliminated the distresses many small groups face—a dominant personality, for instance, or sermonettes that interrupt the individuals’ own capacity to analyze and determine their own paths to maturation. We even forbid the well-intended-but-interrupting, “Oh, let me pray for you.” I watched, often in surprise, at the development of this deepening capacity of the participants to hear and be heard, which appeared to result in measurable and unusually rapid personal growth.

Listening to a Dying Son, However, is Another Matter

Listening to your son, however, who has been given a diagnosis that most likely will be terminal, is another matter altogether. A dedicated team of oncologists at Rush University Medical Center in Chicago, headed by Dr. Parameswaran Venugopal, the head of the cancer unit (where Jeremy spent practically all of the last few months of his life), designed a strong chemotherapy-and-radiation treatment course with an accompanying pharmaceutical regimen. Our son was young (41 years old) and healthy (once the kidney failure had been reversed). Plus, he was determined to live. Because of all this, there was a slim chance of Jeremy beating the odds.

Rough notes in my quick-scrawl handwriting—almost unreadable even to me—indicated that on June 10, in room 1058 of the ICU, Dr. Stephanie Christiansen walked us through the progress of his disease. I wrote in my notebook:

Blastic mantle cell lymphoma. Burkitt cell lymphoma. Blastic = immature white cells. Mass in colon/not typical. STAGE FOUR. Lymphoma.org. Mantle cell is slow growing. Lots of variations. Treatments (1) Chemotherapy/HyperCVac given in cycles of 3 or 4 days, up to 8 cycles. Cycle A drug regimen. Infection. White counts are low—[indecipherable word]—(something?) count every day. Stem cell transfusion.

Perhaps this erratic series of words and phrases gives a sense of how confusing cancer-cell diagnosis and treatment can be to the average family member. Angela, Jeremy’s wife, was persistent in achieving a layperson’s understanding. I tried to grasp what I could, but basically found myself deferring to her determined comprehension.

One day, thinking to myself, If I ever want to write about this, I need to keep better records, I looked over a medical page given us by the hospital staff. The headline was CYTOTOXIC / HAZARDOUS MEDICATION ORDER. At my request, a kind nurse pulled the website description of some of the drugs in Jeremy’s regimen. She also printed me off a copy of the HyperCVad A regime. The drugs listed were: Aloprim, used for stopping high uric acid levels during chemo; dexamethasone; used to treat leukemia and lymphoma; ondansetron, used to stop upset stomach and throwing up; Mesna, used to lower the bad effects of some cancer drugs on the bladder; doxorubicin, used to treat cancer, leukemia and lymphoma; and Vincristine, used to treat leukemia, lymphoma and cancer. These were only for the beginning stages of Jeremy’s pharmaceutical regimen.

I won’t list all the negative side-effects each individual drug is capable of causing. All the printouts for each drug, often four pages long, however, include this question: “What are some side effects that I need to call my doctor about right away?” Then in caps: WARNING / CAUTION.

What follows on each page is a list comparable to the TV pharmaceutical ads where a narrator breathlessly races through possible detrimental responses from the drug the advertisement has just touted as a near-miracle cure. This voiceover invariably accompanies a visual montage of happy people being healed of whatever ailment. Or if not a cure, there are, at least, tantalizing promises of renewed health and vigor, well-being (inferred by the smiles and satisfaction on the actors’ faces) and some physical outcome that is much, much better than the other competitive drug on the market. Inevitably, somewhere in that rushed half-whispered cacophony of possible side effects, the phrase “that can possibly result in death…” usually occur. The truth is this: There is almost no drug you put into your body that won’t cause side effects, eventually, of some kind.

In these early days of treatment, Jeremy, with his wry sense of humor, noted that he had been warned that nausea and diarrhea would be side effects of the chemo: “But no one told me I would explode from both ends at the same time!” That night before this observation he had lain for some time, exhausted, on his hospital bathroom floor before a nurse found him. Chemo treatments are basically a controlled poisoning of the body.

An Instinct About Future Cancer Cures

My instinct—purely a personal uninformed lay opinion, most non-scientific to be sure, and one from a mother watching her child die a gruesome death—is this: One day we are going to look back, like we do now on the Greek physician Galen’s concept of four humors in the blood and the practice of bloodletting and purging and say, “You mean they used to treat cancer by poisoning the body? And the treatment was often as dangerous as the disease?! How barbaric!” I feel this in my bones (or perhaps I should say “in my genes,” since at this time gene manipulation is one of the possible cancer-cure frontiers). Still, I bow before the fact that chemotherapy and surgery are curatives for many cancers in many stages, and I understand that the knowledge to cure evolves in countless laboratories, scattered research centers and across the hospital wards of many countries. Sometimes cures take decades, even centuries, to discover.

Becoming a Better Listener

Somewhere in this first month, Jeremy said to me, “Mom, I don’t know if I can do this.” To my son’s private confession of weakness, I shot back, “Of course you can.” And no wonder I reacted: We were only one month into the horror that is the cancer journey. Despite its ubiquitous presence in our modern world, for the patients and their families who succumb to the disease—and believe me, this is a family affair—we were all impacted beyond our capacity to absorb and understand. Societal familiarity—over 500,000 people die of cancers every year in the U.S.—does not translate to personal capability when faced with this diagnosis in your own family.

Instead of my instinctive “buck-up” retort, I should, instead, have asked those gentle questions drawn from my experience with the listening groups and my consequent research into what happens in the brain when someone feels listening to and understood. “I get it. Sometimes I don’t know if any of us are going to get through all this. Tell me what you’re thinking and what you are feeling.”

“The battle of being mortal is the battle to maintain the integrity of one’s life,” writes Dr. Gawande, “—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be. Sickness and old age make the struggle hard enough.”[2] In every way through those months of hospitalization, I watched my son become diminished and dissipated and subjugated and disconnected. To my great regret, I did not offer my son this opportunity of end-of-life discussions. Though my grief at losing a child was and is still a clean grief—there was no breach in relationship, no sorrows of alienation o displeasure with each other—I do wish I had read Being Mortal before Jeremy died. Gawande’s remarkable book was released in 2014; Jeremy died the year before.

The Battle Against Cancer Is Joined

So, the team of oncologists, headed by Dr. Venugopal, valiantly designed treatments, the goals of which were to bring the active cancer into remission, to keep the toxicity manageable, and to find a donor for a bone-marrow transplant. Jeremy’s oldest brother, Randall, was a perfect match, but that life-supporting treatment was not to be.

I watched as the whole hospital system moved in concentrated efficiency to preserve my son’s life. Siddhartha Mukherjee, writing about leukemia, captures this medical momentum beautifully in his Pulitzer Prize-winning book The Emperor of All Maladies:

“The arrival of a patient with acute leukemia still sends a shiver down the hospital’s spine—all the way from the cancer wards on its upper floors to the clinical laboratories buried deep in the basement. … Its pace, its acuity, its breathtaking, inexorable arc of growth forces rapid, often drastic decisions; it is terrifying to observe, and terrifying to treat. The body invaded by leukemia is pushed to its brittle physiological limit—every system, heart, lung, blood, working at the knife-edge of its performance.”[3]

This describes exactly what I observed about the medical teams working around our son.

Jeremy did go into remission, which Dr. Venugopal described to Angela as a miracle. But the treatment was so toxic to his system that he had no capabilities to fight off the highly contagious and antibiotic-resistant staph infection MRSA—in medical terminology, Methicillin-resistant Staphylococcus aureus—a potential killer for the immune system-deficient. Though present in general society, ironically it particularly loves to lurk in hospitals.

Jeremy succumbed to waves of infection. Ironically, the very PICC line inserted in a vein on his chest closer to his heart so intravenous treatments could be administered was the very source of many of these infections. Soon, Jeremy’s mouth and face became paralyzed. He couldn’t eat, was fed through stomach tubes, his words were bumbled, and in truth, after the chemotherapy treatments, at least to my viewpoint, there was not one day when he was better than the day before.

Nor do I know, apart from Jeremy’s wife Angela, if any one on that whole oncology team, from nurses, to teaching fellows, to the head of the hematology department, to the social workers, to the visiting pastors, ever talked to Jeremy about what was important to him as far as how he wanted to die. This I do know: Our son basically spent the last five months of his life, going from debilitating physical crisis to demeaning physical incapability, longing to be home with his wife and three small children; Eliana age six, Nehemiah age three and the baby, Anelise, age six months. And he wanted to be home on his own terms, anyway, anyhow.

(Lest I forget, let me also mention the two English Bulldogs, Roxie and d’Artagnan, from whom, during his few brief days at home, Jer also refused to be separated.)

End-of-Life Listening Is Paramount

Gawande makes it clear that a listening process is paramount—one in which sensitive questions are asked of the patient as far as what kind of attention attendants and family should be giving to those near death. (This must be a situation in which the medical profession does not do all the talking, however, but learns to listen and to be patient in the listening process—quite a stretch for most knowledgeable folk in any field.) He assesses the deficiencies of retirement and nursing home environments:

“This is the consequence of a society that faces the final phase of the human life cycle by trying not to think about it. We end up with institutions that address any number of societal goals—from freeing up hospital beds to taking the burdens off families’ hands to coping with poverty among the elderly—but never the goal that matters to the people who reside in them: how to make life worth living when we’re weak and frail and can’t fend for ourselves.”[4]

Being Mortal takes a stunning turn into the personal when the writer’s father, Atmaram Gawande, a well-respected and successful surgeon himself, succumbs to cancer. The doctor/son realized that with all the research he had conducted on listening to those in end-of-life scenarios, and with all the insights he had achieved, it was most difficult to apply those principles to his own father. His medical training, his save-and-preserve-life mentality swooped in and crowded out empathy, driving him to find a cure, to perform some sort of intervention. Believe me, I understand.

“The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had any incorrect view of what makes life significant,” Gawande writes.

“The problem is that they have had almost no view of it at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet—and this is the painful paradox—we have decided that they should be the ones who largely define how we live in our waning days … This experiment has failed.”[5]

The next death we go through as a family, if we have any choice at all, will not be done this way. Our son, brilliant and gifted, a multicultural specialist, an adjunct professor teaching college Spanish and who also was functional in conversational Mandarin, this young man with his own immigration counseling service who had achieved the skills and grasp of a paralegal, this funny and compassionate and intriguing young man, died a gruesome death. I shudder even now as I think about it.

Jeremy Mains 12/12/71 - 11/5/13

Conversations Before Dying

Still, before toxicity blasted his nervous system and his mouth became paralyzed (closed for months, then frozen open before he died), this young man, our son, in the early stages of his own death, taught me to listen to the dying. He determined that the long hours spent on my shift would be devoted to catching me up on my woeful ignorance of popular music, or as his teasing explanation defined it, “That would be the last fifty years of music history, Mom.” His sly “gotcha” glance was only made more roguish by his drooping face. My father, after all, had been the director of the music department of Moody Bible Institute—hardly a bastion of contemporary cultural musicology. I was raised in a home where the emphasis was on—guess what?—church music. Worship services. Choir practices on Thursday nights. Youth choir rehearsals on Sunday afternoons. Worship services. Sunday night signs. Candlelight carols. Easter cantatas.

Using his iPad to pull down samples from Pandora, I then realized Jeremy was looking at our study not so much as a pop-culture aficionado but through the understanding of an ethnomusicologist. There was no one I would rather have traveled around the world with as a guide than Jeremy. In high school, he found a native speaker to tutor him in Japanese and took himself off to Japan at age 16 for a summer of foreign culture and a conversational-language plunge. While in college and at his instigation, Jeremy met me at the Art Institute of Chicago to view an exhibit of ancient Japanese kimonos. This private gallery tour gave me a hint that this son was a compulsively curious scholar, a lifelong learner. He knew the styles and ages of the kimonos without looking at the wall plaques. It was here I learned about the Edo period between 1603 and 1868 under the rule of the Tokugawa shogunate, the last military feudal government. I also received an additional short and unasked-for briefing on the demise of the samurai.

Let us next move to China, where Jeremy lived and taught for a cumulative total of three years—two years before he and Angela wed and one after. Need to know about the Shang Dynasty? (Approximate duration? 1600–1000 B.C.). How about the Ming Dynasty? What about the Boxer Rebellion? Before visiting him for a month in the middle of his two-year teaching contract at the Petroleum Institute in the city of Nanchong, Sichuan Province, we were emailed a full reading list to study before embarking. Certainly, it was the equivalent of a college semester of learning.

Jeremy kept records by printing pertinent ideas in small black notebooks, those wrapped with black elastic bands. So, with his determination not to waste the hospital hours, still lying in bed, and with me, a captive student at hand, spending hours, sometimes day and all-night shifts, he introduced me to the American Music Idiom 101. The black books came out, then the iPod. It didn’t take me long (probably on a train ride from the Chicago back to the suburbs) to realize I was being privately tutored in a spontaneous course in ethnomusicology. Initially, that was the study anthropologists made of non-Western music and the cultures and environments and customs that gave rise to them. Eventually, attention was turned toward Western music as well. In short, ethnomusicology has been described as the study of “people making music.” This is exactly what this son opened up for me—he helped me to understand contemporary popular music as a means to identify with the people who had either made or were now making it.

Totally unprepared for the learning curve ahead, seeking at first only to console a gravely ill son, to help assuage the boredom of long hours, to divert attention from the constant tests and blood draws and the impossible difficulty of swallowing pills (even before his mouth became frozen, when kind nurses crushed all the tablets, and even then the taste was so bitter he had difficulty), I began one of the most profound listening experiences of my life. Admittedly, my literacy in popular music consisted of the infrequent songs I heard that others were listening to, or occasional snatches of the tuning dial while driving—the oldies radio station in Chicago, 94.7. The learning was delightful, and I began to see that much of popular music was a cry from the mean streets, sung evidence, in many cases, of what we faith-based folk consider true lostness; I am deeply grateful for the exposure. I learned to listen to the words and rhythms of another kind of dying in that hospital room of my dying child.

As a result of the early chemo rounds when an Ommaya Reservoir had been implanted in his skull to enable the toxic intrathecal brain drips, and because of this procedure, a bilateral droop developed, paralyzing a side of Jeremy’s face and his mouth. It became an excruciating exercise to catch what our son was attempting to say since the consonants b, d, f, m, n, p, v and w were unpronounceable. Sometimes Jeremy would actually press his lips together with his fingers to make the puffing effort for any of these sounds.

Of course, if asked, I would have made the decision to give my life for his in an instant. I would have made the decision for this exchange with such fierce love, such terrible tenderness and without a moment’s hesitation. But that was not a choice at hand for any of us who loved him. But what I could have done I wish I had done. I regret not opening up those conversations about life and its meaning, about death and its coming possibility. “If death is facing you, my dear son, how do you want to frame your last days?”

Lessons Learned About Dying From a Dying Son

There is a curious thing about death, at least for me: The dead are not forgotten. Those we have known in love exist in flashes of vivid understanding after they are gone. My father died when I was 35, my mother when I was 39. The essence of who they were lives on in me—rarely a day goes by that I don’t think of them. I am now in my 70s. We, the living, assess the meaning of the lives of loved ones now dead in ways we would never do had they still been living. We tell “remember-when” stories, and we often pause to analyze the impact of those family events in a way we do not if participants were still alive. Remember the working trip we took together in the Caribbean? What was your favorite part of the trip to Europe? Do you remember how you took on your dad when we arrived in Beijing? (As Jeremy was bartering with Chinese taxi-drivers at the airport after our long flight from the States, David, weary and jet-lagged protested, “Jer, just get a cab, any cab.” Jeremy asked, “Do you speak Mandarin? Or is it I who speaks Mandarin?” Point made.)

I am still processing the meaning of my son’s life and of his death. What have I learned from him? What should I change about the way I approach the days ahead—those days of living and the inevitable days of dying? I have learned this much—one lesson among the many—David and I are saying to one another, my husband and I, “Let us talk together about dying. Let us listen deeply to each other and learn what will make the passage from this world to the next bearable, compassionate and as much as possible for our offspring, considerate.”

I do probably have some papillary cancer floating around in the cells of my own body. A cancerous thyroid was removed from my throat five months after Jeremy’s death. It is a slow-growing cancer. So, my wish at this almost octogenarian age is this: Should that cancer flourish and thrive, let me die. I don’t want at this stage to go through the debilities and excruciating treatments of this current time. I have lived a rich and good life. Four beautiful children. Nine delightful grandchildren. A fruitful and meaningful marriage of some 59 years. A circle of friends. A deep and sustaining faith in God and His Son Jesus Christ. Travel to some 55 countries in the world. Board work with crucial faith-based development organization with corporate missions I was proud to serve. The accomplishment of writing twenty-some books.

This, apart from a magical plunge into ethnomusicology, is another of the lessons about dying I learned from a dying son. Living ends. We cannot always determine when or how that will happen. Yet, in small and remarkable ways, we can ready ourselves for that terminal status. We can be clear, apart from the freak and indubitable accidental, about how it is we want to die. That is not a morbid choice, to talk about our own deaths. End-of-life conversations are paramount to passing well. They fit into the Scriptural discourse of the Apostle Paul,

“For I am already being poured out like a drink offering, and the time has come for my departure. I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day—and not only to me, but also to all who have longed for his appearing.” 2 Timothy 4:6–7.

I miss my son. Miss him every day. But then, I too am close. I am close.


Footnotes:

  • [1] Gawande, Atul. Being Mortal: Medicine and What Matters in the End. London: Profile Books, 2014.
  • [2] Ibid.
  • [3] Mukherjee, Siddhartha. The Emperor of All Maladies: A Biography of Cancer. New York: Scribner, 2011.
  • [4] Gawande, Being Mortal.
  • [5] Ibid.

To read more news on World Cancer Day on Missions Box, go here.

For another blog on Patheos by Karen Burton Mains, go here.

For more blogs on Patheos by Gospel for Asia, go here.