The TMI saga continues

After blogging about Emma Keller’s article in The Guardian about Lisa Adams (read my thoughts here), I felt better. Reading the comments that came in response to that blog made me feel better still. But now I feel bad again. And mad. Really mad. As if Keller’s article wasn’t bad enough/mean enough/hateful enough/out-of-line enough, now her husband has gotten in on the hating.

That’s right, her husband.

He too is a writer, for The New York Times, no less. He joined the fray, I can only assume in an attempt to defend his wife, for whom the fallout has not been kind. His article misses the mark as much as his wife’s article did, IMHO, and he makes a really lame comparison as the basis for his point.

He compares the way Lisa has handled and is handling her cancer to the way his father-in-law succumbed to his cancer. Lisa is in her 40s with three boys to raise. Bill Keller’s father-in-law was a few weeks shy of 80. Can we really compare the situation of a still-young mother to that of a man nearly 40 years her senior, who also faced kidney disease, diabetes, and dementia? I think not.

Mr Keller chooses to break the same rule his wife broke; the one rule that should remain forever unbroken in talking about a cancer patient and how s/he chooses to handle that cancer: don’t judge.

Mr Keller judges, right alongside his wife.

For example, he writes that “every cancer need not be Verdun, a war of attrition waged regardless of the cost or the casualties.”

Like his wife, he wonders aloud, in his column, about the cost of Lisa’s treatment. Which is none. of. anyone’s. business. He even calls into question her partaking of Sloan-Kettering’s Caring Canines program, in which “patients get a playful cuddle iwth visiting dogs.” He whines about neither Lisa nor Sloan-Kettering not telling him how much “all this costs and whether it is covered by insurance.”

Really?? He begrudges a critically-ill woman’s choice to pet a dog and is pissy because he’s not privy to how much it’s costing her?

He characterizes his father-in-law’s choice to stop pursuing life-extending measures as “humane and honorable” and calm and enviable, while Lisa’s is the opposite, in which she is “constantly engaged in battlefield strategy with her medical team.”

Again, this is none.of. anyone’s.business.

Perhaps the worst part of Mr Keller’s piece is this: “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.”

If Lisa Adams wants to be the standard-bearer for one-eyed-one-horned-flying-purple-people-eaters, it is none of Mr Keller’s damn business. If she wants to wave a flag, Braveheart-style, it is none of his concern. If she wants to depend on hope to endure the hell-on-Earth she’s currently living with, he is the last person who should be flapping his gums about it. If she considers herself a success for doing what she felt was best for her and her family in her particular situation, why would any of us take umbrage? Shame on both Kellers.


TMI?

I came across this article from The Guardian about whether cancer patients share too much information via social media outlets. The article centers around Lisa Adams, who is battling metastatic breast cancer.

Like many of us, Lisa started blogging and tweeting to communicate with her supporters and to connect with others on the same “journey.” Lots of us in cancerland do this; it’s a quick and easy way to broadcast the latest developments, it’s an avenue to connect with others in the same boat, it allows for the dissemination of vital information, and it’s therapeutic. The reasons for blogging and tweeting are as varied as the cancer patients themselves.  While we all face a dreaded disease, we do so differently: some of us confront the beast head-on while others close our eyes and wait for it to be over. Some of us share every gory detail while others keep it all inside. Some of us rant while others count our blessings. The one unwritten rule among us is simple: don’t judge. Don’t judge. What works for me may not work for you. It’s all good, just don’t judge.

The article in The Guardian about Lisa’s active social media life breaks that one rule. While the writer, Emma Keller, asks many valid questions about social media, she comes across as very judgmental. She tells us exactly how many times Lisa has tweeted in the past year (165,000) and even points out that Lisa tweeted more than 200 times in a 24-hour period. Why does it matter how many tweets Lisa has put out into the twitterverse? After regaling us with Lisa’s stats, Keller asks this: “Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?

Should there be boundaries in “this kind of experience????” The kind of “experience” Keller speaks of, aka cancer, certainly has no boundaries. Should we, a bunch of complete strangers, truly expect a young women with three young children to consider having boundaries while seriously and for real fighting for her life??? This is lunacy.

Keller continues: “[Lisa] is trying to create her own boundaries, flimsy as they might be. She’ll tell you all about her pain, for example, but precious little about her children or husband and what they are going through. She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate ‘team’, but there is no mention of the cost. She’s living out loud online, but she wants her privacy in real life.”

Keller goes on to add: “You can put a ‘no visitors sign’ on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch.”

I wonder why Keller takes issue with the cost of Lisa’s treatment at Sloan-Kettering.  The scope of cancer treatments is enormous–doctor’s appointments, lab work, scans, X-rays, surgeries, follow-up appointments, repeat surgeries, hospitalizations, chemo, radiation, drug therapies, and lifelong prescriptions. Wondering what someone’s treatment costs is beyond the pale of social decorum.

As for the issue of TMI and the question of whether Lisa is “oversharing” I suggest this: reading tweets and blogs is purely optional, and one must subscribe to receive them. If you don’t like what your smart phone or tablet or computer is bringing you, opt out. Unsubscribe. De-friend. Unfollow. If you don’t want to read what cancer patients like Lisa offer up, it’s very simple: Don’t.

Just don’t.

But don’t judge. And don’t ask insulting questions, such as: “Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive?”

First-person accounts from the front lines of the war we wage on cancer are not reality TV. To equate the real-life struggles of life — and potential death — in cancerland with a guilty pleasure one becomes hooked on is insulting.

While I don’t know Lisa, I think it’s safe to say she’s not concerned with whether the twitterverse and twits like Keller remember her the way she wants them to. I betcha she’s much more concerned with the fine-line of managing her pain while still being lucid enough to enjoy her kids. My guess is she would tell you there is no “appeal” of watching someone trying to stay alive when you’re the one doing it. I assume she would gladly give up twitter and blogging today, this very second, if it meant she could go back to her old life. Her pre-cancer life. Her healthy life.

Shame on you, Emma Keller.