When blogging about illness, what’s TMI? The NYT wades in — and angers many

By Caitlin Kelly

Maybe you’ve been following this recent firestorm?

The one in which Salon, a popular American website, called The New York Times’  former executive editor Bill Keller, and his wife, Gilbey’s gin heiress Emma Gilbey, despicable?


Both of them wrote about cancer patient Lisa Adams, who has advanced breast cancer.

From Salon:

Lisa Bonchek Adams is a mother of three living with Stage 4 breast cancer. She blogs and tweets about what she is undergoing and the decisions she is making about her health; she does so frequently and to a large audience that’s rooting for her. And to a prominent husband-wife pair of journalists, she’s somehow offensive.

Bill Keller, the former executive editor of the New York Times, published an Op-Ed in that paper today indicating that Adams, in spite of the image of positivity and strength she generally broadcasts on her social media platforms, is dying and doing so in a manner somehow undignified; Keller draws a comparison between Adams and his late father-in-law. “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.”

That “trench warfare” has, for Adams, included a variety of medical studies; Keller indicates that Adams’ personal decisions about her health, and her expressing herself online, somehow detracts from people who choose not to undergo experimental treatments or who choose to slip under with less of what is traditionally known as “fighting.” He even finds a Stanford associate dean who is willing to say that Adams “shouldn’t be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage.”

Here’s an analysis piece from NPR’s blog:

the piece enraged a lot of Times readers, according to public editor Margaret Sullivan, that she heard a great deal of negative feedback, and who herself said “there are issues here of tone and sensitivity.”

Boy … you can say that again. By closing the piece with a piece about a dean who “cringes” at Adams’ alleged embrace of a “combat metaphor” (unsupported by any quotes from her own writing) and salutes those who show grace and courage, Keller implicitly suggests that to handle your disease as Adams has is one way to go. The other way to go is with grace and courage. And that’s very unfortunate.

Adams herself says that Keller, along with his wife Emma Gilbey Keller, who also wrote a controversial column critiquing Adams’ handling of her cancer (that was in The Guardian and has since ), have misrepresented the basic facts of her medical status, and Keller has already admitted he got the number of kids she has wrong. These disputes have been pretty thoroughly inventoried in a . And writers at outlets including and have been sharply critical of the need to explain to a cancer patient how to handle (and discuss) having cancer.

This is an issue I’ve thought a lot about — how much to write or blog about one’s illness or surgery or medical issues — and how much to never share beyond one’s circle of intimates. People, in my view, who are the ones who are most likely to have actually visited you and your family in the hospital or come with you to the chemo suite, perhaps.

One woman I know, barely, professionally, shared a lot of detail on Facebook about the effects of chemo as she was treated (so far, successfully) for breast cancer. But there was a lot I wish she had simply kept to herself.

She got a lot of emotional support, which I understand — why she craved it and why people offered it.

My mother had a radical mastectomy in 2003. She is alive. She has survived multiple cancers, including thyroid and a meningioma, a form of brain tumor.

In other words, I already live in daily fear of my genetic heritage and have little appetite to read anything about cancer.

That is not a judgment of people who do, but the effect of knowing too much firsthand already.

I get my medical tests and keep a careful eye on my own body and that of my husband.

I’ve already stared down plenty of doctors and Xrays and seen too much and heard too much. I saw my mothers’ very large brain tumor on the Xray and had to give informed consent for her; here’s the piece I wrote about it for Chatelaine, Canada’s largest women’s magazine.

Who am I to complain when I, too, have written these sorts of stories? They can, I know, be helpful to others and provide comfort to the ill and to their families.

A friend my age died of cancer in January 2006 and several men in my apartment building are currently fighting cancer.

It’s not that I don’t care about people who are ill. It’s the reverse. Instead, I find myself worrying about people I do not even know.

For me, that’s not the best choice.

I have really mixed feelings about this sort of thing — none of which suggests I’m right.

How do you feel about someone sharing a lot of very graphic detail on-line about their illness?

Why getting sick in America is a really bad idea

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May_30_Health_Care_Rally_NP (641) (Photo credit: seiuhealthcare775nw)

One element of living in the United States sickens me to my core — the persistent inequality of access to affordable quality health care, something citizens of virtually every other developed nation take for granted.

Today the U.S. Supreme Court will hand down its decision on the constitutionality of what’s been called Obamacare, a mandate requiring all Americans to purchase health insurance. A CNN/ORC International poll released this month showed 43% of Americans favor the law, 37% think it too liberal, and 13% oppose it because it is not liberal enough.

I grew up in Canada, where health care, paid for through taxes, is offered cradle-to-grave by the government. Yes, it has some deficits, but everyone can see a doctor and go to the hospital without fear of medical bankruptcy, common here.

From this week’s New York Times:

When Wendy Parris shattered her ankle, the emergency room put it in an air cast and sent her on her way. Because she had no insurance, doctors did not operate to fix it. A mother of six, Ms. Parris hobbled around for four years, pained by the foot, becoming less mobile and gaining weight.

But in 2008, Oregon opened its Medicaid rolls to some working-age adults living in poverty, like Ms. Parris. Lacking the money to cover everyone, the state established a lottery, and Ms. Parris was one of the 89,824 residents who entered in the hope of winning insurance.

And this, on how confusing and frightening it can be to receive a fistful of enormous medical bills:

With so little pricing information available, expecting people to shop around for quality care at the lowest cost — something that’s not always possible in emergency situations — is also asking a lot of consumers. “I have always found a bit cruel the much-mouthed suggestion that patients should have ‘more skin in the game’ and ‘shop around for cost-effective health care’ in the health care market,” said Uwe E. Reinhardt, a health policy expert and professor at Princeton University, “when patients have so little information easily available on prices and quality to those things.”

President Obama’s Affordable Care Act, the health care overhaul law passed in 2010, tries to make some improvements (though the Supreme Court is expected to rule whether all or some of the law is constitutional this month). But while the law’s changes help you shop around for insurance policies — specifically through its new HealthCare.gov Web site, a one-stop shop that lists all of your insurance options in one place — it’s still unclear how effective the law will be for anyone comparing medical services.

On February 6, 2012, I had my arthritic left hip replaced. Thanks to my husband’s job, we have excellent insurance coverage, but I knew enough to do plenty of questioning, and negotiating, long before that gurney wheeled me into the OR to avoid nasty and costly surprises later. For example, I needed to make sure the surgeon would accept whatever fee my insurance company offered — decisions and prices I have no control over — but which would come bite me on the ass if I didn’t plan ahead.

I also had to make multiple calls to find out:

1) what the anesthesiologist would charge (about $3,800);

2) what my insurance would pay (about $1,000);

3) who would be on the hook for the difference. Me. (I told the billing manager I’d send my tax return to prove my income; $2,800 is a very big number for me.)

Jose, my husband, offered to look at the medical bills as they arrived, as they would only freak me out, not helpful post-surgery. The hospital — for a three-day stay, with no complications, charged $90,000. No, that’s not a typo.

Did they collect it? Probably not, but they routinely try for whatever they can get.

Then my surgeon billed $25,000. (Our insurance covered it all. Thank God.)

But…what if, like millions of Americans, I had no insurance?

Like my friend R, who is young, broke and lives without it. He recently slipped and fell on a wet sidewalk, needed an ambulance and needs physical therapy then surgery. Worst case, he’ll be paying off a huge bill for years, maybe a decade.

In my 24 years in the U.S. I’ve never lived one minute without health insurance; my mother has survived four kinds of cancer and I live an active and athletic life that also puts me at greater risk of injury. How ironic that being active, (fighting the great American scourge of obesity), can put you at risk of losing your shirt financially…

The cost of buying my own insurance, as a freelancer, left me with few additional funds for fun stuff like travel or nice clothes or shoes or replacing things in my home — air conditioner, dishwasher, computer — I needed and relied on. By 2003, it cost me $700 a month.

Health care is a right, not a privilege. We will all get sick or fall down or suffer a complicated labor or discover a tumor or suffer a heart attack. None of us is immune.

Many Americans cannot even purchase health insurance because they have — in that exquisite euphemism — a “pre-existing condition.” If you’re already sick, tough shit!


Life is a pre-existing condition. Americans, and their elected officials, must deal with this reality more effectively.

Fear Versus More Fear — Why Women Want Mammograms

Mammography pictures, normal (left) and cancer...
Image via Wikipedia

Like many women, I’m confused and alarmed by the recent decision that mammograms aren’t needed by women under 50 and annual exams  only needed every two years for women over 50. My mom, who is fine, had a mastectomy 13 years ago which has made me, like anyone with a history of this disease in their family, hyper-vigilant. I had my baseline mammo at 35 and faithfully get one every year. The summer of 2002 was a little terrifying as some cysts showed up in my right breast and had to be watched. They were nothing.

Would I have been better off utterly ignorant?

Mammos, as anyone who’s had one and the photo I chose for this post make clear, aren’t comfortable. Your breasts are squeezed as flat as possible between two plates of glass, for what feels like ages but is likely 30 seconds. The frightening part is awaiting your results and, like thousands of other women, every year I shake with anxiety. Thank God, so far, I have not been hit with this disease. But I cannot imagine that not knowing what is happening to my body, choosing deliberate ignorance (even with false positives), is better.

The exam gets easier as you age, as breast tissue thins and mammos, typically, hurt less as a result. I plan to keep getting mammos and keeping a close eye on the twins. I’m betting many women will do so as well.

Killian's Album, Made In His Final Days With Cancer — At 16

NEW YORK - MARCH 08:  Drummer and singer Levon...
Levon Helm; Image by Getty Images via Daylife

Many ambitious young musicians might be thrilled to play, and record, with legends like Levon Helm, John Pizzarelli or John Sebastian of the Lovin’ Spoonful. For Killian Mansfield, who died at 16 last summer of a rare cancer, synovial sarcoma, that invades tissue and bone, making a CD was his final wish. The album cover of “Somewhere Else” is a photo of him, sepia-tinted, at a small-town train station near his home in upstate New York.

Phil Mansfield, his Dad — and a friend and colleague of ours who is a freelance photographer — took the photo and those accompanying this story in New York magazine. We met Killian a few years ago when his cancer was in remission and Phil and Babs had moved out of the city to run a local general store and cafe. Babs is an amazing cook, Phil a fun, warm, energetic man and their commitment to their community of West Shokan touched many locals, some of them well-known musicians.

“The fact he was a kid, the fact he was sick — I forgot about that in two minutes,” Sebastian says. “He was a pro, someone who knew how to express himself fully with an instrument.” Adds Pizzarelli: “When I got there, I thought I was on a kind of playdate, right? Then Killian starts playing his ukelele and I was like Oh really?” He knew chord voicings that, for a lack of a better way of putting it, I knew. Soon he was showing me things. No joke, the kid was totally schooling me.”

Money raised from sales of the album will go to Hope & Heroes, a program at Columbia-Presbyterian Hospital helping children with cancer.

Breast Cancer: Too Many Doctors, Too Little Communication — But Smile, Honey!

Washington, UNITED STATES: A breast cancer sur...
Image by AFP/Getty Images via Daylife

Any woman hoping to avoid breast cancer knows mammograms are an essential part of that effort. Yes, they’re uncomfortable  — (OK, squishing your breast flat between two plates of glass is not a laugh riot) — and, if you don’t have health insurance, you’ll have to pay for them. As someone whose mother had a mastectomy, (and is fine more than a decade later), I had my baseline mammo at 35 and am careful to have one every year. Once you’ve had it, though, your results can be wrong, delayed or mis-read, a potentially fatal error.

In the U.S., a medical world filled with the most arcane of specialties, there is none devoted exclusively to breast health and care. Today’s New York Times has a powerful and fascinating op-ed about why this is so.

“Given the haphazard growth in medical specialties and varied training programs for obstetrician-gynecologists. it is no surprise that there is a mismatch between patient needs and caregiver skills. Campaigns to raise awareness of breast cancer must do more than push for a cure. They must also seek to improve the way we organize care for those who suffer from this illness.”

Today’s Times also has a profile of author Barbara Ehrenreich who, when she got breast cancer, was really pissed off to discover how much peer and social pressure women face, once diagnosed, to “be positive.” She wrote and sold a book about it, but most women don’t have that outlet for their outrage. Whatever a woman is feeling, it’s her body, heart and mind. Let her feel it. It’s cancer, already!