To go gently - or not - into that good night
Cancer patient's warrior metaphor victimises others
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 logged 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, gruelling drug trials and grim side effects, along with her posts on how to tell the children, potshots at the breast cancer lobby in the United States, 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 colonised her lymph nodes, liver, lungs and bones had set up a beachhead in her spine, the pathway to her (so far tumour-free) brain. She was deemed too sick to qualify for the latest drug trial.
She is warded at New York's Memorial Sloan-Kettering Cancer Centre, which has embraced her as a research subject and proselytiser for the institution.
Ms 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 US, 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 honourable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.
Among doctors in the US there is a growing appreciation of palliative care that favours 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 the US is learning, is that every cancer need not be Verdun, a war of attrition waged regardless of the cost or the casualties.
It seemed, 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, but they actually live a bit longer.
When my wife, who had her own brush with cancer and who wrote about Ms Adams' case for The Guardian newspaper in Britian, introduced me to the cancer blog, my first thought was of my father-in-law's calm death.
Ms 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 e-mail 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 Ms 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 also such Sloan-Kettering amenities as the Caring Canines programme, in which patients get a playful cuddle with visiting dogs.
(Neither Ms 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 Ms 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 has become a kind of self-medication.
Ms 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.
Dr Scott Ramsey of the Fred Hutchinson Cancer Research Centre in Seattle cited a study showing that only 3 per cent of adult cancer patients who are eligible to enrol in clinical trials do so, and, he said, their reluctance has been "a huge bottleneck in cancer research". Some 40 per cent of clinical trials fail to get the minimum enrolment.
Ms 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 US$50,000 (S$64,000) so far.
"We love it!" Memorial Sloan-Kettering 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 e-mail.
(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. However, as cancer experts I consulted pointed out, Ms Adams is the standard bearer for an approach to cancer that honours the warrior, that may raise false hopes and that, implicitly, seems to peg patients like my father-in-law as failures.
Dr Steven Goodman, an associate dean of the Stanford University School of Medicine, 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," Dr Goodman told me, after perusing Ms 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."
NEW YORK TIMES
