John Lewis and the Fight That Can’t Be Won

John Lewis
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John Lewis is dying.

On Sunday, the congressman and civil-rights icon disclosed a diagnosis of Stage 4 pancreatic cancer. In his public statement, his tenor remained characteristically triumphant, even optimistic: “I have been in some kind of fight—for freedom, equality, basic human rights—for nearly my entire life. I have never faced a fight quite like the one I have now.” He added, “I have decided to do what I know to do and do what I have always done: I am going to fight it and keep fighting for the Beloved Community.”

As for his prognosis, Lewis acknowledged only that he “may miss a few votes” during treatment “over the next several weeks.”

Stage 4 is the final stage of pancreatic cancer. It means that his disease has spread beyond the pancreas, into other parts of the body. Though Lewis did not disclose the extent of the spread (and his office didn’t immediately respond to a request for further comment), pancreatic cancer is among the most ominous possible diagnoses. Overall median survival of Stage 4 pancreatic cancers is two to six months after diagnosis.

“I tell patients to expect a matter of months, not years,” Mary Dillhoff, a surgeon who specializes in pancreatic cancer at Ohio State University, told me. “This will most likely end his life, and there are no treatments that would prolong it extensively or cure him.”

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While there are always rare outliers who survive for years, the chance of someone being alive five years after a diagnosis of pancreatic cancer (at any stage) is only 9 percent. Lewis’s assertion that his late-stage disease is “treatable” is distinct from “curable.” A 79-year-old man diagnosed with this disease may not die of it, but, he will certainly die with it.

In such advanced cases, the goal of treatment—in the traditional, medical sense—is to slow progression and extend life by a matter of months. Newer treatments such as immunotherapy—which harnesses one’s own immune system to attack and eradicate cancer cells—have not reliably helped with pancreatic cancer. Treatment still usually relies on chemotherapy, with its many attendant side effects, from hair loss to inability to eat. Radiation may add to and compound side effects such as fatigue and nausea, making even basic elements of life difficult to enjoy.

In other diseases, the downsides of treatment may be endured in hopes of an outcome where the disease is gone and the treatment is no longer necessary. Some patients find it helpful to conceptualize unpleasant regimens as “battles” to make it through. But this is not the case with many cancers, including Lewis’s. Patients cannot will their way through painful surgeries or sickening regimens toward some better time. The battle metaphor fails.

The language of “fighting” cancer has thus become a sensitive one among those who deal with the disease—not only patients but also doctors, nurses, and family members who want to set expectations in the most helpful way.

“I really despise the metaphor of fighting a battle,” Dillhoff said, “because I see people every day who are trying as hard as they can to live with this diagnosis. You can try to use your remaining time better, but I don’t like people to think that if they just fight hard enough, this is something they can beat. This is an evil cancer, and it’s going to do what it does.”

Still, Lewis has lived the life of a fighter and may rightly expect to go out accordingly. He has worked to change systems and challenge the status quo, against seemingly impossible odds. He has taken up political battles against the most pernicious social pathologies. Lewis’s way of fighting has been to push against what others likened to immutable forces of nature, and to refute their dominance over him.

Lewis has also spent his life battling cancer in effective ways. If there is a battle to rally around in this arena, it is supporting research and getting people care—the fights in which he and others have engaged for decades. Lewis has supported expanding Medicaid in Georgia, expanding the Children’s Health Insurance Program, funding the National Institutes of Health, regulating predatory practices in the pharmaceutical and insurance industries, building communities where people can afford food and housing and education, and so many other measures that drive health.

These are the fights everyone can fight throughout life. In one’s dying months and hours, though, the cancer fight is not on the individual. For a patient, the battle is to maximize the number of quality days and hours ahead, and to do the most with them that one can.