BECOMING JANUS

In English idiom, it is not desirable or commendable to be two-faced. The term is synonymous with deceit and, quite literally, duplicity. Yet, as a patient-physician, I find myself having become a better person by assuming a dual identity, the two halves summing to more than their component parts.

The most famous double-visaged figure in history was the Roman god Janus. Rather than being vilified as insincere he was deified for embodying dialectics: beginnings and endings, war and peace, past and future. To be clear, I make no pretense of being the Alpha and Omega myself, much as doctors might be accused of playing God. But I can now look at medicine in the same way an audiophile can appreciate music in stereophonic sound: as both patient and doctor.

“See one, do one, teach one” is an adage among physicians-in-training that testifies to our accelerated apprenticeship, emphasizing how quickly we are propelled from passive to active learning during our professionally formative years. Also implicit in the sequence is the ascending cognitive impact of receiving, applying, and then imparting wisdom. Early in our career development, we tacitly recognize the value of living out and then sharing that which we have first witnessed. 

In critically appraising evidence, though, we are quick to discount the individual anecdote. An n of 1 lacks the power we need to gird our decision-making with statistical rigor. As impartial analysts we hew to Cicero’s distinction that “the wise are instructed by reason, ordinary minds by experience,” trivializing those perspectives that are not reproducible between independent observers.

Gnosis, the Greek word for knowledge, forms the suffix for so many of our thought processes in medicine:  the largely deductive reasoning by which we identify precisely what vexes each patient from among a vast number of potential maladies, the informed prophesying by which we foretell their futures.

But pathos, the Hellenic concept of experience, appeals more to feeling, and this is what our patients seek to communicate. Their understanding of illness is different than ours, accreted not through medical school, post-graduate training, and clinical practice, but through the inimitable tutelage of inhabiting a body for years, far beyond the ten thousand hours that Malcolm Gladwell prescribes to acquire true mastery of a subject. It is the same gaping difference between a pilot’s comprehension of flight and a hawk’s. The raptor doesn’t have to know about lift, drag, pitch, and yaw; it just feels the air beneath its wings, rides the thermals, instinctively plots its angle of attack. The doctor, like the birdwatcher following a trajectory, can only observe the disease course without totally sharing in the experience.

This sense of always being at a slight remove — a perpetual outsider looking in — has particularly irked me as a medical oncologist. In truth, most cancer doctors know not quite what we say when we talk about chemotherapy. We are akin to teetotal bartenders slinging artisanal cocktails, concocting doublets and triplets as we pull ingredients off the pharmacy’s top shelf but still not absorbing the full impact of our mixology. It is only by paying very deliberate attention to our patients, tracking their constitutional nadirs as assiduously as we plot the cyclic declines of their neutrophil counts, that we can hope to approach the true meaning of toxicity.

I still haven’t danced with the “red devil” of doxorubicin, been shaken by the inescapable chill of oxaliplatin, or endured any of the other exquisite rigors that our patients experience on chemo. But I have awoken from a Whipple operation – having been briefly and reversibly disemboweled, my surgeon having done to my guts what Picasso did to faces – wracked with indescribable pain. I have begged for hydromorphone in the midst of my own personal opioid crisis, one marked more by narcotic deficiency than excess. I have plummeted to the basest levels of the hierarchy of need, unable to nourish or hydrate myself, as wholly reliant on others for sustenance as a newborn. I have retched uncontrollably through seeming eons of nausea, the minute hand of the clock in my hospital room making the laziest circumference as I waited for hyperemesis to abate.

In this light, having emerged from my own darkness, I now look at adverse events quite differently. It is my pet peeve when AEs are addressed as fleetingly in a scientific talk as the presenter’s financial conflicts of interest, a brief flash of a slide that passes so quickly as to seem almost illusory, like oratorical sleight-of-hand. Yes, concrete endpoints matter when we judge the merits of a clinical trial, but I have yet to meet the patient who cares more about time to progression than quality of life. We must collect patient-reported outcomes (PROs) and prize them as highly as we do improvements in radiographic criteria; it is truly heart-breaking to enter an exam room, beaming with pride that a pixelated simulacrum of the patient shows a smaller lesion, only to have the human source of the images respond: “then why don’t I feel any better?”

Meaningful assessment of PROs will take prospective incorporation of metrics into the design of our studies. For too long we have accepted inexact correlates of how well (or poorly) our patients are living, even if we can manage to prolong their survival. To paraphrase John F. Kennedy’s own moonshot, we should do these things not because they are easy, but because they are hard. The difficulty we face in trying to quantify the ineffable agonies caused by our treatments will pale in comparison to the adversities already imposed upon our suffering patients.

As it turns out, I was born to be two-faced. Not only did a mutated MEN1 gene exist in my germline, coiled in my chromatin like a snake preparing to strike, but I have congenital ptosis. For my entire life, my left eyelid has drooped lower than my right. Since symmetry is key to beauty, my medical career has never been derailed by the temptations of professional modeling. Other than an affront to my vanity, though, it has seldom bothered me; in fact, not only is that shuttered globe still capable of sight, it affords a field of vision that my other eye cannot. It warns me when I am over-tired, for instance, descending like a curtain over my pupil in times of exhaustion. My drive home after shifts during residency was perfectly timed to the length of Led Zeppelin’s “Stairway To Heaven”; when my ptotic lid sagged, I was cued to fast-forward through the slow lullaby at the song’s beginning to the jolting guitar solo at its end. In this way I arrived home safe and stimulated, cautioned by my visual defect against falling asleep at the wheel.

In a similar manner I have learned to love my new empathetic perspective as an afflicted healer. What others might perceive in me as palsied, I see as hard-won insight into the pathos of cancer.