The ASCO Post is pleased to reproduce installments of the “Art of Oncology,” as published previously in the Journal of Clinical Oncology. These articles focus on the experience of suffering from cancer or of caring for people diagnosed with cancer, and they include narratives, topical essays, historical vignettes, poems, and photographic essays. To read more, visit ascopubs.org/journal/jco.
As I drove on the unfamiliar highway, I could barely see through my foggy windshield into the darkness. I rarely went to the Detroit suburbs. I missed turn after turn as my GPS repeatedly rerouted me. I was distracted as I contemplated the purpose of my trip and wondered if I should turn around and go home.
Rashmi Chugh, MD
I seldom attend services for patients of mine who die. I fill my head with reasons why I should refrain. I tell myself it is about self-preservation and I need to move on to care for my other patients, rather than dwell on loss. I have to save every bit of emotional energy for the continuous influx of new patients, as well as current ones, all of whom need explanations and attention, discussions and care.
I also need to save my time outside of work for my family. Surely, my presence at a swim meet or helping out with pre-algebra homework is more valuable than any time spent in remembrance for someone lost. I tell myself loved ones have no real desire to see an oncologist anyway. I am just a living reminder of difficult conversations, challenging toxicities, and, ultimately, their loss. They would rather focus on the positive aspects of their loved one’s life at this time than to see me. I try to convince myself my time is better spent elsewhere.
As I drove closer to the wake, I began to recognize the true reason for my avoidance, buried in my self-serving justifications. This time, I somehow could not stay away. I lacked a sense of closure for this loss that I just could not get over, and unsettled thoughts kept reverberating in my head.
Remembering Adam
I remember when I met Adam. He stared at me intently as I described the rarity of his disease, its unpredictable natural history, and the lack of known effective therapies. His tumor had already migrated from his axilla to his lung, with neoplastic cells found interdigitated within his left ventricle. Despite an aggressive metastasectomy, recurrence was nearly inevitable, and no literature was needed to predict that. I meticulously described the pros and cons of the recommended adjuvant chemotherapy regimen, recognizing he was absorbing only a fraction of what I said. I could see him retreating as he envisioned his life as a recent college graduate and young professional living in Chicago fading before him.
From the corner of my eye, I closely watched Adam’s mom and dad. Dad was carefully thinking about the treatment options and the impact they would have on his son. I recognized he was going to pursue any option that may improve the chances of beating this disease. Mom was quiet but full of emotion as she considered the impact chemotherapy would have on her son’s current life. Even more deeply, she thought about the impact her son’s disease could have on his future life. I could not help but wonder how I would react if it were my son, who was just 8 years younger than Adam.
"I could not help but wonder how I would react if it were my son, who was just 8 years younger than Adam."— Rashmi Chugh, MD
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Six cycles of therapy went by slowly and quickly at the same time. Every 3 weeks, Adam traveled 250 miles from his world of millennial friends to the comfort and support of his doting family to receive his despised chemotherapy infusions. While he was eager to attack the cancer he could not see, he resented the time it took away from the prime of his life.
“Am I in remission?”
How I hate that question. I answered it in my usual noncommittal way. “You have no evidence of disease that we can see, and we can only hope there is no disease hiding that we cannot see.” I cannot forget the disappointment in his face when he came back only 3 months later with a grand mal seizure, triggered by brain metastases, despite the fact that an MRI had been clear just months earlier.
Adam spoke quickly and anxiously after his parents respectfully left us alone so he could ask questions. He questioned whether the chemotherapy did anything to alter the course of his disease, as he remembered what an impact it had on his life. We discussed the topic rationally, along with his lack of systemic recurrence and the concept of the blood-brain barrier. Adam’s speech slowed as I saw him coming to grips with his new reality. Then he asked me a question that brought to light the limits of his understanding of the situation.
“So, do you think I will only live another 5 to 10 years?”
I am not sure where his timeframe came from. As oncologists, we are all careful with numbers. We know that no matter how adeptly stated, timelines become engraved in patients’ minds like a prophecy and are repeated to others without the same careful qualifiers we provide. For my younger patients, I am even more cautious with my words—perhaps to a fault—as I try to protect them from the harshness of a reality they cannot change. I know we had not broached this topic before, and I certainly had not provided him with those numbers.
How could I tell him that 5 to 10 years would be a miracle—and not the curse he was facing? I delicately discussed the typically life-ending nature of progressive, multifocal brain metastases that are often equated with much shorter timelines. I made sure to leave a glimmer of hope on how novel therapies and his overall good health may portend an improved outlook. My explanation was met with a long unbroken silence.
No Turning Back
I kept driving to the funeral home. There was no point in turning back after coming this far. But how could I face his family, whom I had come to respect and care for as much as Adam himself? Did they think I failed them or could have done more? I could not stop thinking that perhaps I had missed something that could have made a difference. Or maybe, just as importantly, I had not prepared Adam and his family well enough for this moment.
I cautiously walked into a packed house, full of chatter and life, where the positive energy in the room was palpable. I stared at a lifetime of photographs full of friends and memories of the young man whom I thought I knew so well.
I kept wondering what else I could have done to prolong that life, so full of promise, which I saw in the pictures. I had spent hours applying for compassionate-use medications with little rationale, in the hope they would cross the blood-brain barrier. I was desperate to come up with some type of elixir, something that could buy him some more time.
Two Parents Mourn
I walked toward his parents, who were standing alone at the end of a long line of well-wishers. I watched them as they gave one hug after another, holding it together as their close friends and family paid their respects. I slowly moved up to the front of the line, fearing their reaction. Would I just remind them of Adam’s suffering? Would my presence just cause them more pain?
Dad saw me first and gave me a warm greeting. He remarked on how Adam gave it a good fight, and I saw him fill with pride as he talked about his only son. I echoed his sentiments and mourned silently, knowing how deeply his heart was broken.
Then I saw her, Adam’s mom. She had always been by his side, his perpetual source of strength and quiet reassurance at every chemotherapy appointment. She was elegant, as always, in a black dress, giving each loved one a warm, teary smile, while keeping her composure as the receiving line kept moving.
One glance at me and she immediately began to sob. I had feared this reaction and wondered if my presence was causing more harm. I tried so hard to stand tall and smile as she looked fixedly at me, praying her gaze was directed at the couple behind me.
In between the sobs, I heard her soft voice say, “You tried to save my son.”
My heart sank, my pulse raced, and I broke into a sweat. I waited with fear for the second half of the sentiment. What would it be? “You tried to save my son…and failed miserably,” or maybe, “you tried to save my son…but couldn’t.” All of my insecurities about how I may have failed Adam came rushing forward.
I stood there motionless until I heard it again. “You tried to save my son.” That is all she meant. We shared a hug. She whispered about how attached Adam was to me and how thankful she was for my care. The tears were contagious, and we spoke of how much more there was to Adam than his cancer. She introduced me to her family as Adam’s oncologist, who tried to save her son. Just as she and Dad had tried to save her son…and the radiation oncologist…and the neuro-oncologist…and the neurosurgeon…and the thoracic surgeon. We had all been together on this mission.
Keeping Expectations Real and Finding Peace
This was not a statement of failure. What I heard was sincere acknowledgment of effort against an unbeatable beast. We talk about the unrealistic expectations from patients and families but fail to recognize what we impose upon ourselves. Most of us enter this field with the belief that we can make a difference. This could be by providing comfort to those in need, sharing critical knowledge,
developing new drugs, or carefully administering existing ones. Do our own expectations in this process become unrealistic at times?
Every now and then, a patient does better than expected. Sometimes that may be to our credit, but most often it is not. Just as when cancers behave aggressively and when treatments do not work, we are not to blame. Like our patients, our efforts are subject to the whims of a disease that we often cannot control. Sometimes that is difficult to remember, even after years of training and experience. We hold on to the idea that we can improve outcomes and make a difference. We need to hold on to these ideals to keep going.
"Like our patients, our efforts are subject to the whims of a disease that we often cannot control."— Rashmi Chugh, MD
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Adam’s mom did not expect me to save her son. She was just thankful that I tried. I was thankful I did not stay away but instead joined Adam’s family and friends to pay my respects. I needed them to know my efforts were true, my caring ran deep, and I truly did my best for Adam. They deserved to know what a profound and lasting impact he had on me, as well as so many others.
I was not ready to say goodbye to Adam at our last appointment 2 weeks prior. Perhaps that reflected my own inability to let go, as much as his. But seeing Adam’s family at his wake, still able to celebrate his life so well-lived yet tragically lost, helped me to find my own sense of peace. The experience also taught me about self-preservation. It was not just about avoidance and moving on. It was about taking the time to get one’s own sense of closure, to face our feelings and insecurities, and maybe occasionally…to attend a wake.
DISCLOSURE: Dr. Chugh has served as a consultant or advisor to Immune Design; has received institutional research funding from AADi, Advenchen Laboratories, Epizyme, Lilly, MabVax, Morphotek, Mundipharma, Novartis, Pfizer, Plexxikon, and Springworks; holds intellectual property in Wolters Kluwer; and has been reimbursed for travel, accommodations, or other expenses by SpringWorks.
Acknowledgment: This article describes an actual patient and my real experiences. The patient’s first name has been changed in the article.
At the time this article was published in the Journal of Clinical Oncology, Dr. Chugh was working in the Division of Hematology/Oncology at the University of Michigan Rogel Comprehensive Cancer Center, Ann Arbor.
