Monday, January 13, 2014

Heroic Measures - NYTimes.com

LISA BONCHEK ADAMS has spent the last 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 last 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, 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 pain killers 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 assure 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 studyeven 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 writtenabout Lisa Adams's case for The Guardian, introduced me to the cancer blog, my first thought was of my father-in-law's calm death. Lisa Adams's choice is in a sense the opposite. Her aim was to buy as much time as possible to watch her three 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.

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http://www.nytimes.com/2014/01/13/opinion/keller-heroic-measures.html?nl=todaysheadlines&emc=edit_th_20140113