I am not even quite
sure how I stumbled upon this piece published on the New York Times Op Ed page
two weeks ago. Sometimes you start out looking for one thing and find
yourself going down an unexpected path that leads to something even more
interesting. What first came to my attention was some rather virulent criticism of
this piece. I had never read the blog that Bill Keller writes about, but having
now looked at it a bit I have to say what I have said watching a number of
friends confronting serious illnesses: each individual handles this in his or her own way.
During the past couple of years I have known people whose reactions to the
diagnosis ranged from being overcome by fear and/or anger to embracing what may
seem to others unrealistic optimism. I think Barry and I have approached this in our
usual way, a serious dose of reality peppered with my really lame efforts at
humor.
A small aside: the
piece mentioned the MSKCC Caring Canines program. I remember they came and
offered this to me during one of my early hospitalizations. I found it amusing
because I have never been especially comfortable around dogs. That feeling must
arise from some part of the brain other than the one where my tumor was,
because it remained completely intact. Needless to say, I declined the offer.
I think Bill Keller
is 100% on the mark with what he says, which I interpret as “whatever floats
your boat.” Just because someone shuns the military language and does not choose to "fight the valiant battle" does
not mean that the person is weak. Such a choice might be an incredible show of
strength for some patients, who must also take age and other health concerns
into account. Who are we to say?
I sit here just a bit
more than 24 hours from my next MRI. Whatever the future brings, I hope I will
be able to continue to maintain a balanced view. I have no wish to throw in the
towel too soon, but I hope I will know if the time comes to do so.
Heroic Measures
JAN. 12, 2014
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 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’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.
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’s 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’s 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 faultedfor 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’s 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.”
Love,
Rebecca
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