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April 24, 2014

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OTHER VOICES:

Heroic measures

Lisa Bonchek Adams has spent the past seven years in a fierce and very public cage fight with death. Since a mammogram detected the first toxic seeds of cancer in her left breast when she was 37, she has blogged and tweeted copiously about her contest with the advancing disease. She has tweeted through morphine haze and radiation burn. Even by contemporary standards of social-media self-disclosure, she is a phenomenon. (Last week, she tweeted her 165,000th tweet.)

A rapt audience of several thousand follows her unsparing narrative of mastectomy, chemotherapy, radiation, biopsies and scans, pumps and drains and catheters, grueling drug trials and grim side effects, along with her posts on how to tell the children, potshots at the breast cancer lobby, poetry and resolute calls to persevere.

In the past month or two, her broadcasts have changed tone slightly; her optimism has become a little less unassailable. As 2013 ended, the cancer that had colonized her lymph nodes, liver, lungs and bones had established a beachhead in her spine, the pathway to her (so far tumor-free) brain. She was deemed too sick to qualify for the latest drug trial. She is bedridden at New York’s Memorial Sloan-Kettering Cancer Center, which has embraced her as a research subject and proselytizer for the institution.

Lisa Adams is still alive and still blogging, and insists she is not dying, but the blog has become less about prolonging her survival and more about managing her excruciating pain. Her poetry has become darker.

“The words of disease become words my brain gravitates to,” she pecked the other day after a blast of radiation. “The ebb and flow of cancer, Of life. And so too, Inevitably, Of death.”

In October 2012, I wrote about my father-in-law’s death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except painkillers and allowed to slip peacefully from life. His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.

Among doctors here, there is a growing appreciation of palliative care that favors the quality of the remaining life rather than endless “heroic measures” that may or may not prolong life but ensure the final days are clamorous, tense and painful. (And they often leave survivors bankrupt.) What Britain and other countries know, and my country is learning, is that every cancer need not be Verdun, a war of attrition waged regardless of the cost or the casualties. It seemed to me, and still does, that there is something enviable about going gently. One intriguing lung cancer study even suggests that patients given early palliative care instead of the most aggressive chemotherapy not only have a better quality of life, they actually live a bit longer.

When my wife, who had her own brush with cancer and who has written about Lisa Adams’ case for the Guardian, introduced me to the cancer blog, my first thought was of my father-in-law’s calm death. Lisa Adams’ choice is in a sense the opposite. Her aim was to buy as much time as possible to watch her two children grow up. So she is all about heroic measures. She is constantly engaged in battlefield strategy with her medical team. There is always the prospect of another research trial to excite her hopes. She responds defiantly to any suggestion that the end is approaching.

“I am not on my deathbed,” she told me in an email from the hospital. “Periods of cancer progression and stability are part of the natural course of this disease. I will be tweeting about my life and diagnosis for some time to come,” she predicted, and I hope she’s right. In any case, I cannot imagine Lisa Adams reaching a point where resistance gives way to acceptance. That is entirely her choice and deserving of our respect. But her decision to live her cancer onstage invites us to think about it, debate it, learn from it.

The first thing I would say is that her decision to treat her terminal disease as a military campaign has worked for her. Her relationship with the hospital provides her with intensive, premium medical care, including not just constant maintenance and aggressive treatment but such Sloan-Kettering amenities as the Caring Canines program, in which patients get a playful cuddle with visiting dogs. (Neither Adams nor Sloan-Kettering would tell me what all this costs or whether it is covered by insurance.)

Whether or not this excellent care has added months or years to her life, as she clearly believes, is a medical judgment, and her doctors, bound by privacy rules, won’t say. Most trials of new drugs aim to determine safety and calibrate dosages, and make no promise of slowing the disease in the participants. But any reader can see that Adams’ online omnipresence has given her a sense of purpose, a measure of control in a tumultuous time, and the comfort of a loyal, protective online community. Social media have become a kind of self-medication.

Lisa Adams’ defiance has also been good for Memorial Sloan-Kettering. She has been an eager research subject, and those, I was surprised to learn, are in short supply. Scott Ramsey of the Fred Hutchinson Cancer Research Center in Seattle cited a study showing that only 3 percent of adult cancer patients who are eligible to enroll in clinical trials do so, and, he said, their reluctance has been “a huge bottleneck in cancer research.” Some 40 percent of clinical trials fail to get the minimum enrollment. Adams has been a cheerleader for cancer research in general and Memorial Sloan-Kettering in particular. In fact, she has implored followers to contribute to a research fund set up at the hospital in her name, and has raised about $50,000 so far. “We love it!” the hospital tweeted last week about the Lisa Adams phenomenon. “An important contribution to cancer patients, families, and clinicians! :)”

Beyond that, whether her campaign has been a public service is a more complicated question.

“I am public about this disease in order to shed light on the daily lives of women living with this diagnosis rather than hiding behind the pink party line that is the only one that gets the spotlight,” she told me in an email. (The ubiquitous pink-ribbon breast cancer campaigners have been faulted for overselling the wonders of early detection and giving short shrift to research.)

Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.

Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.

“I’m the last person to second-guess what she did,” Goodman told me after perusing Adams’ blog. “I’m sure it has brought meaning, a deserved sense of accomplishment. But it shouldn’t be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage.”

Bill Keller is a columnist for The New York Times.

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