Physician Perspectives

"In the early spring of 1998, my husband, Harvey Preisler, was diagnosed with cancer.

Being oncologists, Harvey and I both understood precisely what the sweating meant. Known as a B-symptom, it is a well-recognized manifestation of many cancers, especially lymphomas, and it is not a good sign. B-symptoms are associated with a more advanced, more aggressive disease with a poorer prognosis.

Cancer is what I had been treating for two decades, yet until I shared a bed with a cancer patient, I had no idea how unbearably painful a disease could be. 

Stay positive is the refrain, as if it were a sin to voice the intense pain and suffering of cancer patients...Treating the public like fragile, vulnerable, oversensitive, easily hurt, anxious adolescents needing protecting from stressful details is unfair, shortsighted, and in the long run, counterproductive for everyone involved. 

For himself, Harvey faced and accepted the truth. When I would become upset by the intensely painful nature of his illness, he was always calm and matter-of-fact. "It's the luck of the draw, Az. Don't distress yourself over it for a second." It was an acceptance of the human condition with almost inhuman composure. "We are all tested. But it is never in the way we prefer, nor at the time we expect."

Words are not necessary when you have been with someone for almost twenty years; his body spoke volumes. My heart missed a beat. 

The second call was to my sister..."I think Harvey has c--" I could not pronounce the c-word. That choked up feeling I experienced in the first few lonely minutes of Harvey's initial diagnosis would stay with me, on and off, for the next four and a half years. 

His composure and his comportment until the final conscious moments was nothing short of heroic."

Azra Raza, MD in The First Cell

"I flipped through the CT scan images, the diagnosis obvious: the lungs were matted with innumerable tumors, the spine deformed, a full lobe of the liver obliterated. Cancer, widely disseminated. I was a neurosurgical resident entering my final year of training. Over the last six years, I'd examined scores of such scans, on the off chance that some procedure might benefit the patient. But this scan was different: it was my own. 

We [my wife, Lucy, and I] held each other tightly, like young lovers. In the past year, we'd both suspected, but refused to believe, or even discuss, that a cancer was growing inside me. 

Why was I so authoritative in a surgeon's coat but so meek in a patient's gown? 

At age thirty-six, I had reached the mountaintop; I could see the the Promised Land, from Gilead to Jericho to the Mediterranean Sea. I could see a nice catamaran on that sea that Lucy, our hypothetical children, and I would take out on weekends. I could see the tension in my back unwinding as my work schedule eased and life became more manageable. I could see myself finally becoming the husband I'd promised to be. 

[Lucy] was upset because she had been been worried about it, too. She was upset because I wasn't talking to her about it. She was upset because I had promised her one life, and given her another. 

Lying next to Lucy in the hospital bed, both of us crying, the CT scan images still glowing on the computer screen, that identity as a physician--my identity--no longer mattered. With cancer having invaded multiple organ systems, the diagnosis was clear. The room was quiet. Lucy told me she loved me. 

Instead of being the pastoral figure aiding a life transition, I found myself the sheep, lost and confused. Severe illness wasn't life-altering, it was life-shattering. It felt less like an epiphany...and more like someone had just firebombed the path forward. Now I would have to work around it. 

Standing at the crossroads where I should have been able to see and follow the footprints of the countless patients I had treated over the years, I saw instead only a blank, a harsh, vacant, gleaming white desert, as if a sandstorm had erased all trace of familiarity. 

...as I started reading about chemo...the sheer number of questions I had prevented any useful directed study. 

My family engaged in a flurry of activity to transform my life from that of a doctor to that of a patient...My father declared that these modifications were capitulations to the disease: I was going to beat this thing, I would somehow be cured. How often had I heard a patient's family member make similar declarations? I never knew what to say to them then, and I don't know what to say to my father now. 

The reason doctors don't give patients specific prognoses is not merely because they cannot...What patients seek is not scientific knowledge that doctors hide but existential authenticity each person must find on their own. Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability. 

As a doctor, you have a sense of what it's like to be sick, but until you've gone through it yourself, you don't really know. 

The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out...Death may be a one-time event, but living with terminal illness is a process."

Paul Kalanithi, MD in When Breath Becomes Air

"Paul's decision not to avert his eyes from death epitomizes a fortitude we don't celebrate enough in our death-avoidant culture. His strength was defined by ambition and effort, but also by softness, the opposite of bitterness. 

Relying on his own strength and the support of his family and community, Paul faced each stage of his illness with grace--not with bravado or misguided faith that he would "overcome" or "beat" cancer but with an authenticity that allowed him to grieve the loss of the future he had planned and forge a new one. 

I am proud to have been his partner throughout, including while he wrote this book, an act that allowed him to live with hope, with that delicate alchemy of agency and opportunity that he writes about so eloquently, until the very end. 

On page 115 of this book, he wrote, "You can't ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving." It was arduous, bruising work, and he never faltered. This was the life he was given, and this is what he made of it. When Breath Becomes Air is complete, just as it is."

Lucy Kalanithi in the Epilogue of When Breath Becomes Air

"One morning in November of 1989, [my brother] Harvey phoned to tell me that he had been having bowel irregularities and pain for a few weeks, and the previous afternoon had been found to have a mass on the right side of his abdomen. 

Even this most guileless of men was not to be sweet-talked out of his anxiety. We saw through each other, as brothers usually do, but only I knew just how bad his diagnosis was likely to be. A painful mass in a sixty-two-year-old man with bowel problems and a family history of intestinal cancer will almost certainly prove to be due to a partially obstructing malignant tumor--and one that is probably far too advanced for effective treatment. 

As Harvey recovered from the operation's assault, I grappled with the twin issues of truthfulness and treatment...But how was I to be objective in trying to make clinical judgments for my own blood?... With this burden on my shoulders, I made a series of mistakes. That I made them with what seemed like the best of intentions does not mitigate how I feel about them in retrospect. I became convinced that telling my brother the absolute truth would "take away his only hope." I did exactly what I had warned others against. 

In New Haven, I "discussed the case" (a euphemism for what I really did, which was to scrape the brains of oncologists in my search for a miracle) with colleagues. Several times, I tried to talk things over with Harvey's doctors, which I found an exercise in frustration and a lesson in medical arrogance.

I could not face my brother and speak the words that should have been said; I couldn't tolerate the immediate burden of hurting him, and so I exchanged the possibility of the comfort that may come with an unhampered death for the misconceived "hope" I thought I was giving him. 

No one who has treated cancer patients will ever discount the power of the subconscious mechanism we call denial, which is both friend and enemy of a person seriously ill. Denial protects while it hinders, and softens for a moment what it eventually makes more difficult. 

Where my own brother was concerned, I had forgotten, or at least forsaken, the lessons learned from decades of experience. Thirty years earlier...Harvey would have probably died at about the same time he eventually did...but his death would have been without the added devastation of futile treatment and the misguided concept of "hope" that I had been reluctant to deny him and his family, as well as myself. 

The more knowledge we have about the realities of lethal illness, the more sensible we can be about choosing the time to stop or the time to fight on, and the less we expect the kind of death most of us will not have. For those who die and those who love them, a realistic expectation is the surest path to tranquility."

Sherwin B. Nuland, MD in How We Die