Deep Remission by Gaetan Sgro
To feel the joy of kissing your child on the cheek at night is to sanction, even to praise, the riot of cells rotting out the gray-faced boy outside the cancer garden.
–Christian Wiman
This riot of cells is the thing I fear most. Not snakes. Not the clear air turbulence through which I reflexively pray, but the specter of liquid death that lurks within each human body. Within my body.
Ironic, since I have lived for the past 20 years—as of this writing, fully half my life–with what could be viewed as cancer’s photo negative: runaway immunity.
It is late summer before senior year of college and I’m sweating through preseason workouts with my NCAA Division I swim team, running trails through the College Woods, tossing medicine balls into the blue, Virginia sky, and projecting—six months into the future—my medal ceremony at conference championships. Having trained through the break I am in the best shape of my life, unaware that my cells are about to betray me.
Before the white oaks have finished shedding their leaves, I will stagger aboard the team bus outside the natatorium in College Park, collapse in my seat and wonder, What the hell is wrong with me?
I will have done my own shedding, dropping 30 pounds since those hot August days—surrendering all of the new strength and much of the old. I will not grace the podium or even make the final heats at this Thanksgiving invitational. Instead, I will spend much of the time between events squatting on the toilet.
By winter break, I won’t be able to remember when, exactly, the diarrhea started. And the cramps that lighten my sleep will have become constant background noise. Back home, I will recline on an exam table as the gastroenterologist washes his hands. He will press a deep dent into my lower right side and, seeing my reaction, pronounce the diagnosis definitively: “Crohn’s Disease.”
The future dissolves into the present. I watch heat rise in my mom’s normally stoic face.
In 1761 Giovanni Battista Morgagni described a young man who died after a long illness marked by fever, abdominal pain, and diarrhea. An autopsy revealed intestinal inflammation and ulceration centering on the terminal ileum, characteristics of a disease that would not be formally classified by Drs. Ginzburg, Oppenheimer, and Crohn until the 1930s.
Unlike my Italian counterpart, I am fortunate to have been born into a family with good health insurance late in the 20th century. With the help of doctors willing to coordinate treatment across state lines and my cousin who shuttles me to off-campus infusions, I achieve remission within weeks.
By early February, I am able to rejoin my teammates for conference championships where I swim the 8th fastest time in prelims, eking out a place in the finals and securing a result marked with an asterisk in place of a medal. The asterisk signifies maturity, compromise. At least, in theory.
In practice, I am not used to compromising. Having spent four months ignoring, minimizing, and denying my body’s gradual self-immolation, I have no trouble adjusting to a new normal of daily pills and periodic IVs.
For the next two decades I try to remain at least vaguely aware of my good fortune, rarely yielding to the thought that it might not represent a permanent state of grace.
I become a physician who studies poetry and recognize in these lines of Naomi Shihab-Nye how natural it is to ignore one’s own mortality:
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
At work in the hospital, I witness what John Stone means when he warns, “For disease will peer up over the hedge / of health, with only its eyes showing.”
But he’s not talking about me.
It seems that fellow internist Jack Coulehan was right: “pain doesn’t exist / in the past any more than this morning does.”
The longer I live without cramps, without bleeding, without joint aches or rashes, without whole meals passing through me, the more abstract my disease seems.
If chronic illness never flares, at what point does it cease to be? How would I know if it’s gone, or else simply masked by treatment?
The term “deep remission” enters my consciousness: “a conceptual, more ‘extended’ goal that may or may not alter the long-term natural history of the disease,” according to gastroenterologist HJ Freeman.
It’s a tantalizing possibility, the idea that this prolonged truce between my cells and me may never cease.
Then again, the term “remission” itself is indefinite, an asymptote that continually approaches and yet never quite reaches that most sought-after state.
Although I remain symptom-free, at some point a routine colonoscopy reveals evidence of active inflammation. My gastroenterologist—a colleague whose periodic check-ins feel more like formalities at this stage—proposes increasing my dose of azathioprine, by now my only maintenance therapy. Mostly, I think nothing of it.
Mostly. As a patient, it’s tempting to trust my physician completely. As a physician, this escalation seems to call for due diligence.
Azathioprine is a prodrug of 6-mercaptopurine (6-MP), which blocks DNA synthesis and thus, preferentially, the proliferation of rapidly dividing cells. I read that it was first discovered in the 1950s and showed promise against childhood leukemias before being repurposed to prevent transplant rejection and to suppress autoimmunity. I learn that, despite winning the 1988 Nobel Prize in Medicine for her discovery of 6-MP, Gertrude B. Elion once remarked: “A knowledge of the biochemical loci of action of 6-MP in the inhibition of nucleic acid synthesis is not sufficient to explain the effects of the thiopurines on the immune system.”
A darkly cloaked uncertainty moves into my life and I wonder, Has he been here this whole time?
Caring primarily for hospitalized patients, much of my work concerns the immune system’s role in fighting infection. Less often, I encounter people like me whose immune cells have become dysregulated, mistaking healthy tissues for invaders and weaponizing inflammation against our skin, joints, and internal organs. Without medications to suppress these misguided attacks, patients would suffer pain, tissue loss, permanent scarring, and death.
Dr. William Osler famously advised that, “One of the first duties of the physician is to educate the masses not to take medicine.” This was surely sound advice at a time when Heroin and mercury were marketed as panaceas, and remains so today in many cases. But to some of us living in the era of immunomodulators and monoclonal antibodies, it can seem both ungrateful and unwise to doubt such therapies.
And yet, there is a dark side of immunosuppression: not only an increased risk for infection but also the potential failure of a hamstrung immune system to detect and destroy nascent malignancy.
The body produces billions of new white blood cells per day, each instance of cellular replication an opportunity for DNA to become damaged or miscopied. If certain mistakes are not quickly recognized and deleted by the immune system, leukemia can arise. The same malignant potential exists in cells that line the respiratory tract, in lymph nodes throughout the intestine, and in every inch of skin.
When it comes to azathioprine, the balance between anti-inflammatory and pro-cancerous effects is poorly defined. To further complicate my equation, patients with Crohn’s disease might face an increased risk of cancer both secondary to intestinal inflammation and as a consequence of their treatments.
By next check, the increased dose of azathioprine appears to have had the desired effect. All is quiet in my terminal ileum.
And yet, during this recent patch of rough air something has shifted in the cabin and I am no longer content to remain on autopilot.
Some guidelines recommend considering discontinuation of azathioprine after 3-4 years of disease remission. Soon, my drug and I will celebrate our platinum anniversary.
One day I am watching a case-conference on a 30-something year old man with Crohn’s disease treated with 6-MP who had developed jaundice. I make sure to disconnect from the live stream before I learn if the cause is a drug-induced liver injury, if this man’s inflammation has spread to his bile ducts, or if his yellowing skin is a sign of something worse.
It’s something worse.
“It was an aggressive treatment related T-cell lymphoma,” the chief resident informs me, as the color drains from my face.
Most days, I try to conceal my dual citizenship in the countries of doctor and patient. No person in suffering wants to hear about someone else’s pain. And if the doctor himself is sick? Then decision making is best left to unbiased minds.
But I was a patient first, and sometimes my mind gets away from me.
I am a happily married father of two little girls, meaning there are three sets of cheeks I very much enjoy kissing. I often think that I’d like to live to the ripe old age of—Oh, I don’t know—infinity? And so, the awareness of impermanence, of my inevitable separation, grows with each passing day.
Schopenhauer said, “Life swings like a pendulum backward and forward between pain and boredom.” We’re all just trying to exist somewhere in between.
Lately, I can’t stop wanting to tinker with this balance.
The best available research suggests that my chances of relapse after discontinuing treatment are high. If I relapse, can I achieve remission again with the same therapy, or will I need something stronger? If we don’t catch the inflammation in time, will I develop complications that require surgery? If so, how much intestine will I lose and how will that affect my life? To what extent would even subclinical inflammation increase my colorectal cancer risk? And on the other side, am I just rolling the dice when it comes to the development of an even deadlier disease, particularly as I age?
I comb through the evidence, having to remind myself periodically that—just as covering my eyes never protected me in games of hide and seek—the risks persist whether or not I face them.
And yet, so many of the answers I seek are not merely unclear but—at this relatively early stage in the era of prevalent autoimmune disease and immunotherapy—entirely unknowable.
Those of us living with autoimmunity today are participating in individual prospective clinical trials called our lives.
And the questions themselves may convey risk. Today, I remain fortunate; healthy. I wonder what danger I’m courting simply by contemplating a change.
In the parable of Death in Tehran, a wealthy man comes upon a servant who has been shaken by an encounter with Death. The servant begs for a horse so that he can ride to Tehran and seek refuge, and the master grants his request. Later, the master asks Death why he frightened the servant and Death responds, “I did not mean to frighten him. I was only startled to find him still here when I was expecting to meet him in Tehran tonight.”
I decide to stop my meds on Halloween, figuring that choosing a holiday will make it easier to measure how far I make it. Despite my training as a physician, I cannot say whether I am motivated more by reason and science or by intuition and faith. Which is how I know I am back in my native country.
In that other space, dressed in the armor of objectivity, I interview patients whose charts are thick with diagnoses, who nevertheless confidently proclaim that they are perfectly healthy. My impulse as a clinician is to question their insight. As a patient, I understand how much easier it is to look away.
Denise Levertov observed that, given the complexity of human physiology, it’s a marvel that any one of our biological processes ever works, let alone all of them working well most of the time.
To soberly countenance the potential catastrophes waiting within each of our bodies would induce a state of anxiety approaching paralysis.
And so, we keep living, hoping against hope that somehow we can achieve deep remission with respect to the human condition, quickly banishing the dark thoughts, swallowing our medicines, holding tight to our loved ones for however long we can— as time and biology march beside us, stride for stride.
Gaetan Sgro is a hopeless romantic, girl dad, and associate professor of medicine at the University of Pittsburgh School of Medicine. His writing has appeared in Rattle, The Bellevue Literary Review, Hippocampus, Intima, Annals of Internal Medicine, JAMA, Best New Poets, and elsewhere. You can read more of his work at GaetanSgro.com
17 September 2026
Leave a Reply