FRIDAYS WITH PAUL
– by Mark A. Lewis, M.D.
Dr.Mark Lewis ,a Medical Oncologist is director of gastrointestinal oncology at Intermountain Healthcare in Salt Lake City, Utah .He diagnosed his own hereditary cancer syndrome during the beginning of his oncology residency and underwent a Whipple’s surgery for Pancreatic Neuroendocrine tumour . Here, he reflects on his experiences of interacting with a Pancreatic Cancer patient post surgery . This reflective piece is an example that its not just Physician Heal thyself, rather how meaningful conversations with patients can have a profound impact and bring solace to the doctor too.
“How I envy you,” my patient said.
I had anticipated many reactions to reappearing in my oncology practice after having taken medical leave to undergo a Whipple procedure. Self-consciously, I expected furtive glances at the cadaverous hollows of my drawn face, framed by wasted temples. In my shrunken head I had scripted small talk; I practiced conversational feints away from discussing my recovery, marred by the harrowing complication of delayed stomach emptying and the weekslong misery of nasogastric decompression.
But in all these actorly preparations to rejoin my practice, I had not foreseen jealousy.
“I wish I was operable,” continued Paul*, a dignified gentleman in his late seventies. Clarifying his covetousness of my condition, he didn’t long for the tasteless sustenance of total parenteral nutrition, or ache to feel firsthand the visceral agony of pancreaticoduodenectomy. The stigmata of my central line and my lengthy midline incision were only epiphenomena of his true desire. He wanted the surety of a skillful, confident doctor striding out of the operating room and declaring “we got it all”.
I could empathize. I too had sensed a foreign, quasi-evil growth inside of me, in need of exorcism by excision. But a sage surgeon once taught me that his finest touch was required not in dissecting the carapace of peritumoral stroma away from the pancreatic vasculature. Rather the sharpest judgment was needed in bifurcating what could be done from what should be done. We were sitting together in multidisciplinary conference and he pointed at another adenocarcinoma projected on the screen, the tumor buried deep in the abdomen like a shameful secret: “Technically speaking I can get that out. But soon there will be too many weeds in the garden for it to matter”. Sure enough, within weeks a grim harvest of bad seeds had sprouted in both lobes of that patient’s liver.
Paul never made it to the operating table either. Shifting from curative to palliative intent, he became a regular visitor to my clinic and infusion center. We spent most of our appointments together parsing the exquisite neurotoxic rigors of chemotherapy, contrasting the inescapable but fleeting nip of oxaliplatin with the more tiresome, crescendoing tingle of nanoparticle albumin-bound paclitaxel. Every two months we reviewed his scans, which at first showed a disappointing lack of response in his primary mass, then its tightening, tentacular grip on the celiac axis, and, finally, a most distressing bloom of intrahepatic metastases. I admitted defeatedly that his disease had surpassed my control. His care became focused purely on comfort. Paul went home and I never saw him again in person.
But a funny thing happened on the way to hospice.
The dying patient began to heal his prognostically favored physician.
Paul had been candid that he envied not just my tumor’s resectability but its histology, which he called, wistfully and imprecisely, “the good kind of pancreatic cancer”. It took every ounce of my professional restraint not to rebuke him for that phrasing. Patients with neuroendocrine tumors have long been cursed with the misnomer that their disease is, at worst, “cancer-like”, whereas the famously deceased Steve Jobs and Aretha Franklin (not to mention thousands of lesser-known victims) are now-silenced witnesses to their potentially fatal menace.
So yes, I knew I was lucky to be alive. In fact, in the immediate aftermath of the operation, I had experienced the most wonderful epiphany: my mind, perhaps even my soul, was separate from my malignancy.
I had never been more certain that we are more than just a collection of cells prone to going rogue, that there are parts of the human being inviolable by either cancer or knife.
What the scalpel did to cleave my flesh and essence I would gladly keep asunder. The benefits of the surgery seemed almost metaphysical, immeasurably meaningful beyond the extirpation of my most threatening tumor.
But later, when my post-operative course was no longer enumerated as discrete days and instead blurred into monotonous months, joylessness descended like a scrim over my vision, darkening my worldview. My broken body, unable to function as it had before, began to erode my willpower.
In my lowest moments I wondered if the Whipple – the object of Paul’s most fervent fantasy – had been worthwhile, questioning if overall survival was the endpoint par excellence I had always assumed it to be.
My surgery took place in August, but it ushered in a winter of my discontent that persisted long past the vernal equinox. The transience of adjustment disorder ossified into depression, a permafrost that refused to thaw. It was, therefore, more to my good fortune than Paul’s that, as spring arrived and seeds bloomed both in his garden & his liver, we slipped into a pattern of phone calls every Friday.
Physicians suffer a collective arrhythmia when it comes to the traditional notion of the work week. “Thank God it’s Friday” is the refrain of those who routinely celebrate a break from their labors on Saturday and Sunday. But there is no such thing as ‘TGIF’ in oncology; to the contrary, hematologists fear the influx of newfound cases of acute leukemia as complete blood counts are reviewed before the weekend
That said, I discern a Sisyphean pattern to clinic, where both oncologist and patient alike must cope with the mounting burden of cyclicity. My heart hardens by Fridays, calloused by consecutive days encountering tragedy. On one such Friday, finding myself psychologically at rock bottom and reaching out to a somewhat kindred spirit, I phoned Paul. He lived at a distance so it was a poor surrogate for a house call but I learned more about him in that one conversation than I had in all our previous visits.
Oncologists talk about the importance of milieu, the host environment of the tumors we target, but we seldom have the time or opportunity to study the true substrate of our patients. The social history, perhaps only performed once, has become a reductive checklist of vices, not an authentic exploration of their identity. Freed from the narrow confines of my office, Paul shared his full self: his almost-ironic love of horticulture, his national ranking in shuffleboard, his circumnavigation of the globe in a sailboat.
Relaying his voyage around the world decades earlier, he told me that his ship had nearly capsized in a cyclone. In hindsight, he mused, God had saved him from drowning then so it was greedy to also ask to be rescued from cancer now. In his own words, he had been spared during the tempest but was now “damned to the doldrums”. He did, in fact, linger listlessly for a while until, one Friday, I called his cellphone and, despite his tendency to answer immediately, it went straight to voicemail. I recorded a message he would never hear.
He has been gone for over a year now but he has never left me entirely, having inoculated his oncologist against self-pity. His case has been a vital, indelible reminder not to wallow in my own perceived misfortune but to rejoice in relative good health and the opportunity to serve others while I still can. In the obverse of grief I have departed the doldrums myself.
At each week’s end I find renewed gratitude simply in his memory: it’s Friday, thank Paul.
Featured image : Thanmayi GS; Final year MBBS student
TREAT by ALTERDOCTORS co-founders Dr.Binu Joy and Dr.Nitin Yashas had an exclusive interview with Dr.Mark Lewis on his decision to take up oncology, his own battle with the disease, his reflections on the mindset when encountering cancer patients in the clinic. Further, the interview discusses on issues of Empathy and Patient advocacy. Dr Lewis goes on to discuss the role of reflective writing and tweeting in the life of a physician. Watch this space for more….
