Snappie from my local Kohl’s:
Wait! Is it 1971?
Psst… Kohl’s… the shame barrier on breast cancer was broken decades ago. The cone of breast cancer silence has long since been removed. You can’t swing a dead cat in October without hitting a pink ribbon. The cat is out of the bag.
How many more clichés will it take?
Something seems familiar about that pink elephant thing though, and it’s not just that the expression “seeing pink elephants” means being hopelessly drunk.
It’s coming to me…
Oh that’s right. METAvivor’s 2012 campaign to bring awareness to the fact that despite metastatic breast cancer being responsible for virtually all breast cancer deaths, it only gets 5% of the funding.
What’s that I smell? A little co-opting going on?
A mammography study involving 90,000 women over 25 years has been released. Several stark conclusions:
1) Death rates from breast cancer were the same in women who got mammograms and those who did not.
2) One in five breast cancers found and treated did not pose a threat to women’s health
3) There is no benefit to finding breast cancers before then can be felt.
4) Studies showing a survival benefit for mammograms may lag behind improved treatments and may not follow standards for clinical research.
Dr. Susan Love commented on this article on facebook. ”One reason that mammography doesn’t add much is that early detection turns out to be less important than biology ie aggressive tumors are worse than less aggressive tumors!”
For years, the drumbeat has been “early detection saves lives.” Study after study as well as anecdotal evidence from my own life shows this isn’t true. Recently I was involved in a flap on Facebook with someone who said that breast cancer survival rates are soaring.
Are they really soaring, I asked?
Yes, you often hear that 90+% of women diagnosed with breast cancer are still alive in 5 years. How much of that statistic is attributable to improved screening technology? What I mean by that — with improved detection in digital mammography, a radiologist might detect a tumor before it is palpable. A lot of breast cancer grows slowly, so it might be years earlier. She might survive the five years and pump up that statistic, but if the biology is such that our current medicines can’t stop her specific type of breast cancer, she will go on to die eventually. Maybe in 8 years instead of 4 thanks to early detection.
No, that doesn’t mean that early detection bought her four more years. It means that the cancer was discovered four years before it would have been without mammography and without impacting the outcome. You’ll note that this study found no survival benefit to catching the tumor before it’s palpable.
In other words, we can find a cancer years earlier, but if its biology defies our available treatment methods, what good does that do? We need to focus on the biology of the tumor, not on early detection.
The article says this about DCIS:
If the researchers also included a precancerous condition called ductal carcinoma in situ, the overdiagnosis rate would be closer to one in three cancers, said Dr. Anthony B. Miller of the University of Toronto, the lead author of the paper. Ductal carcinoma in situ, or D.C.I.S., is found only with mammography, is confined to the milk duct and may or may not break out into the breast. But it is usually treated with surgery, including mastectomy, or removal of the breast.
We need to focus on the reality of this disease, not on what we want it to be. Yes, I know it’s scarier and means we have far less control over our health than we like to believe we do. But if we really want to change the outcomes, we need to start dealing in facts. One in five is unacceptable. One in three is unacceptable.
The risks of over-treatment are real, folks. Consider just my case: I don’t have routine scans to check for cancer recurrence. Since I was diagnosed at age 41 and treated with every technology possible, my doctor believes that radiation from regular scans over the years could eventually cause another cancer in my body.
And that doesn’t even begin to address the physical, emotional, and spiritual toll that chemotherapy, lymph node removal, a bilateral mastectomy, and 26 doses of radiation took from me. And I needed all that to survive my aggressive Stage III cancer.
As an insider, the idea that women are getting all this treatment without needing it is simply obscene. All because it serves the status quo.
A friend of mine just sent me one of her favorite inspirational quotes: ”Do the best you can until you know better. Then when you know better, do better.” – Maya Angelou
Twenty years ago, we started down this path of early detection because we thought it would save lives. Turns out it doesn’t, so now it’s time to do better.
Organizations like Komen, associated most closely with this disease in the public’s mind, need to turn this big pink ship around. This is not to say that their decades of awareness have been a complete waste of time, but it’s time to move on. From the article:
Dr. Kalager, an epidemiologist and screening researcher at the University of Oslo and the Harvard School of Public Health, said there was a reason the results were unlike those of earlier studies. With better treatments, like tamoxifen, it was less important to find cancers early. Also, she said, women in the Canadian study were aware of breast cancer and its dangers, unlike women in earlier studies who were more likely to ignore lumps.
“It might be possible that mammography screening would work if you don’t have any awareness of the disease,” she said.
I live in a type of border town — between the north and the south. Technically, making it across the Ohio River to Cincinnati equated to freedom for slaves and we were a Union state in the war, but we have our fair share of people who share traits most commonly associated with the south.
Just a mere 35 minutes away (per google maps) from my front door is the Creation Museum, where you can go learn about the dinosaurs on Noah’s Ark. Last night museum founder Ken Ham and Bill Nye (the science guy) debated creationism vs evolution. At first I wanted to go, but then realized that I didn’t want to give that joke of a museum a dime of my money. Plus, even my 13-year-old daughter understood how it would be when she asked me what the debate would even be about since you’d have Bill Nye talking about evolution and Ken Ham rebutting it all by saying no, it’s not in the Bible.
What else is there to say?
From all reports, she nailed it.
I reject the idea that you have to make a choice between science and religion. There are strident fundamentalists on both the side of science and of religion who believe they are mutually exclusive, but only the fundamentalists of Ken Ham’s persuasion want to interfere with education.
The two are not opposites. In fact they aren’t even really related at all, except in the minds of people who want to try to make it so.
My kids go to Catholic school and so did I. Never did any of us learn that our creation myth was anything other than that. Never did we learn that evolution is a liberal atheist plot to lead children astray. That is truly crazed, paranoid thinking aimed at separating you from your money or trying to get your vote.
For the record, a myth doesn’t have to be literally true to be true. That’s their job, to point to larger truths and Jesus employed this same technique. When he said that if your eyeball causes you to sin, you should pluck it out, I don’t think he anticipated or desired a wave of self-mutilation.
I don’t know why people tend to cling to the most basic and literal translation of myth, other than that maybe it’s easier and doesn’t tax your poor brain so much.
I don’t understand the appeal of willful ignorance, nor do I understand why people cling to such a small and limited idea of God.
Coincidentally, in the last few days I’ve been catching up with a three-part interview with Neil deGrasse Tyson on Bill Moyers. He talked about the long history of assigning anything you can’t explain scientifically as being proof of God, and how unwise that point of view is.
If that’s how you’re going to invoke God. If God is the mystery of the universe, these mysteries, we’re tackling these mysteries one by one. If you’re going to stay religious at the end of the conversation, God has to mean more to you than just where science has yet to tread. So to the person who says, “Maybe dark matter is God,” if the only reason why you’re saying it is because it’s a mystery, then get ready to have that undone.
Exactly my point. It’s just us trying to place God in a tiny,easy, understandable box. Foolish is a kind judgement, if you ask me. Choosing ignorance and enforcing the same on the next generation would be closer to my opinion.
There’s no need to reconcile science and religion. There’s no conflict between the two at all. If someone tells you there is, I ask you to find out why.
For the third year in a row, I have the great privilege of being included as one of Sharon Salzberg’s 28 day meditation challenge bloggers.
I’ll be hanging out over there most of the month, so please join us. And by join us, I mean both participate in the discussion and commit to the challenge. I don’t think you’ll be sorry. Sharon’s Lovingkindness Meditation has been an anchor for me — may all beings be safe, be happy, be healthy, and be free from suffering.
Here’s a little Friday poem on a theme.
Fire ~ Judy Brown
So building fires
to the spaces in between,
as much as to the wood.
When we are able to build
in the same way
we have learned
to pile on the logs,
then we can come to see how
it is fuel, and absence of the fuel
together, that make fire possible.
We only need to lay a log
lightly from time to time.
simply because the space is there,
in which the flame
that knows just how it wants to burn
can find its way.
The knee-jerk reaction to the Keller op/ed pieces I read most often took issue with the idea that Adams should go away and die quietly. That got my own knee a-jerking because it’s as obvious as the nose on my face that no one told Lisa Adams to shut up and die. The Kellers were analyzing what a narrative and a methodology like Adams’ mean in the greater context of illness and society. The real story here, as I wrote, was the way this outsized response did little more than impose another normative set of rules – how “outsiders” are allowed to speak about the social media derring-dos of this so named e-patient movement.
Let me make sure I am clear enough on one point — there is no right or wrong way to have cancer.
Scientists have been learning in recent years that there is not just cancer vs. no cancer. Each tumor has its own unique composition of cells and that composition; the heterogeneity, growth pattern, and other unique behaviors, affects the outcome. I think that’s also true of the person with the disease. We are each a unique combination of biology and chemistry with a history, psychological makeup, varying support structures, confidence, woundings and sources of strength. Those affect how we cope with the massive psychological blow of this rotten disease.
What I believe is incumbent on me, a person who has made it this far past my 2008 diagnosis, is to allow for people who’ve been touched by this shitty conglomeration of diseases to tell their own story. That’s not the same as sitting on my front porch and watching life go by. Work is needed to build and maintain safe paths available for everyone.
Yep, that includes Adams and the Kellers. As far as I can tell, there are plenty of guardians on the social media paths already. How about elsewhere?
In the litany of the Keller wrongs, it was often cited that comparing Adams to Mrs. Keller’s father is invalid because he was elderly and she is in her 40s. I admit there is something particularly unjust about a young person with cancer – in cancer terms I was too – a newly minted 41-year-old at diagnosis. But this argument all too quickly descends from tsk-tsk-isn’t-it-a-shame thinking to the Orwellian notion that some animals are more equal than others. The elder Mr. Keller likely suffered from the same debilitating side effects of this stupid disease. He too was in pain and was valuable. He too was loved and needed by his family.
To imply that his choice to stop treatment was somehow more acceptable because he was older is to say, in essence – Of course old people don’t stand and fight. They’ve lived enough already. Let’s not be greedy.
Of course, we have absolutely no idea if that is the case, nor is it our place to assume a person’s demographics dictate a cogent treatment path. After all, as god and all of Twitter know, we are going to scream and type in caps when we believe someone is doing that to one of our own. You Can’t Judge Us!
But we judge. I don’t know if it’s an innate human tendency of not, but it sure is ubiquitous with varying degrees of severity.
When I put my words out in the world, I know I will be judged by them. I try to be careful in my clarity so as to avoid misunderstanding. But once they’re out there, they are public domain. If I’m lucky, they will interact with your thoughts and context and meaning will be created. The meaning you create is largely out of my control.
We can spend a century arguing about what the meaning of “is” is, but to expect that somehow our words are so precious that they can’t be examined, dissected, philosophized about, or put into unintended contexts is foolish. Part of being empowered is to accept responsibility for your action. Start pointing the finger of blame at a cruel misunderstanding world and you’ve just given away all your agency.
While there are no better or worse ways to have cancer, people will have an opinion of how you cope with your disease. Your job, our job, is not to squash their opinions out of them or to shame them into a silent corner. You choose to pay attention to those norms, those shoulds, or not.
Trailblazers raise eyebrows. I say embrace it.
That Adams’ story has garnered attention outside of our own teapot is a good thing. People are (or were) paying attention. That this opportunity was squandered by assuming the finger-pointing, how dare you? stance of victimhood is heartbreaking to me. That the Kellers, have been maligned and belittled under the guise of being “bullies” enrages me.
So here we are, weeks out. The lines between Us and Them have been redrawn, reinforced, and I bet good money that no one as prominent as the Kellers will dare write about cancer and social media again.
The lid’s securely back on your teapot. Pat yourself on the back for all your Pyrrhic righteousness.
I was fully entrenched in the early days of speaking up via social media as to the reality of breast cancer. The dominant narrative five years ago was one of triumphant defeat of a scary disease; of fun and pink ribbons. Along with others, I felt marginalized — yes grateful to be alive but also broken by treatment. And what about the pesky facts of breast cancer – that the only way to know for sure you’ve been cured is to die of something else? And, of course, where do people who die of this rotten disease fit into the pretty and uplifting stories of survivorship? Social media helped us to find each other and speak our truths. That was a good thing.
I don’t believe that the pink ribbon movement started with the intent to marginalize anyone. I believe they wanted to raise money to cure cancer. I imagine they believed that by dragging the disease into the light, by making is seem like less of a bogeyman, they would help. More people would be attracted to the cause and willing to invest. But over time the idea became an institution, no longer nimble enough to respond to cries for change.
My friend and mentor, Mary Pierce Brosmer, warned me against going to war with the pink ribbon folks. We talked for months and I came to believe that waging war against the dominant narrative is a recipe for failure. Yes, you might succeed in usurping power, but then what? For starters, how will destroying the current structure be seen by well-intentioned people who bought into the pink ribbon narrative? Wouldn’t it be much, much more effective in the long run to create a system in which we can co-exist and work together? Borrowing again from the problematic war metaphor — maybe we can win the war, but how do we win the peace?
I realize now that you can make room at the table in a couple of ways — either you can kick out the people who are currently at the table and take their chairs, or you can build a bigger table.
I know the prospect of chair stealing brings the possibility of a greater emotional payoff. But that’s a temporary high and like all highs it comes with a hangover.
This, however, is not an easy sell. There’s no elevator speech. It’s work that requires soul-searching, a commitment to inclusion, and unending vigilance.
It’s a work that is never done.
I came to believe that making the table bigger was the only approach to bring change, so when I read Bill Keller’s column, Heroic Measures, last week, I was heartened that someone with such a big platform said 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.
In the voluminous backlash against this Op Ed, the point has been made that Adams rejects the mantel of warrior. I stipulate — Adams has voiced her rejection clearly. Perhaps Keller should have stated that plainly but I don’t think that point is germane to his piece. Whether she rejects it or not, her large twitter following (almost 14,000 as of this writing) following shows that her work has attracted readers en masse. Her Twitter description reads in part, “doing as much as I can for as long as I can.”
So perhaps, despite her rejection of the warrior model of cancer, she represents that for people.
Or perhaps this is a new twist on how we define a warrior, altered by what people call the e-patient movement.
I’ve argued from the beginning that this article was grossly misinterpreted as a personal attack, this is a perfect example. I think Keller’s point is not about how Adams characterizes herself, but rather about how she has come to be seen in the world.
His larger point is this — if people consider her the model for how to have cancer, how are people like his father-in-law viewed? As failures? How do we ever even hear these stories if they never garner the level of attention that Adams’ has?
Again, this is not about Adams or her own personal story. This is about what her story may represent in this brave new world of social media.
Back when Mary and I were talking about creating real change, I found myself getting frustrated with my inability to clearly communicate my vision. So frustrated, in fact, that I walked away from it all believing that real change is impossible. There just weren’t enough people who wanted to do the work of building a bigger table.
A couple of years ago, Komen the Pink Goliath began to fall apart and I wondered then what would rise up from its ashes.
I’m afraid I got my answer this week – a new sort of orthodoxy that bears a striking resemblance to the old sort.
Personally questioning the motivation of the writers, questioning their ethics, calling them playground names, demanding apologies, inserting subjective ideas of ill intent, trying to ride the coattails of unrelated but emotionally charged issues by (ab)using terms like “cyberbulling” serve only one purpose — to silence those who disagree. The Kellers and anyone else who dissent are banished to the same margins pink ribbon tyrants used to use.
Until we build a bigger table (a job that’s never finished) we will repeat this pattern of climbing to the top of the hierarchy and fighting to be on the throne, to be the one who decides which stories matter most.
I think the many of the people I pinned my early hopes on have gone too far down the path toward the castle to reconsider, but I hope, sincerely, there are still enough people at the crossroads willing to gather wood.
Last week, The Guardian’s Emma Keller wrote an column about the social media presence of Lisa Bonchek Adams, a young woman dealing with metastatic breast cancer. I’d link you to the article, but the Guardian has removed it pending investigation. As I tell my children, everything on the internet is permanent, so here is an archived copy.
The last names aren’t a coincidence — they are married.
A media poopstorm broke out. I found articles all over the place picking and choosing quotes from these op-ed pieces to support a sense of outrage. I am choosing not to do it here. They are short op-ed pieces, so if you want to see what all the hubbub is, please, click the links and draw your own conclusions.
My basic conclusion is this: Mrs. Keller’s piece was lacking in substance and seemed personal in nature. That she published a personal message from Lisa seemingly without her permission is unethical. She operated in poor form throughout, including saying Lisa is dying of cancer, rather than living with it. For someone who is fighting for every inch, that’s a pretty big error. If Keller’s premise was that she was turned off by the volume of Adams’ tweets, why didn’t she simply stop reading them?
However, I have that same reaction to people who have spent so much time hating on Mrs. Keller for this column.
Mr. Keller’s piece, in my opinion, offers the possibility of opening a larger, more important conversation — how we view death as equaling failure, how the medical community values aggressive treatment over palliative care, how we lift up a warrior model of fighting cancer, how many resources are spent on programs that may or may not have an impact, whether everyone has the same access to care. To me, Mr’s column was nuanced and careful not to pass judgment.
Is it perfect? No. The wisdom of using a woman struggling with cancer with a large social media following is questionable. In the end, it risks coming off as an insensitive personal attack.
But I am extremely concerned by the vitriol being returned to him in-kind and the impression that leaves on the casual observers of the breast cancer movement.
Here’s what I saw last night — the Kellers have no right to an opinion about cancer and end of life issues because they don’t have metastatic disease. If you think they were telling Lisa to go away and die quietly, I challenge you to reread with a cooler head.
Most of the time our message is that we need everyone to pitch in to eradicate cancer, that it’s a global problem which needs a global solution. Yesterday the message was quite the opposite – if you’re not in our shoes, shut up or risk angry reprisal from a whole lot of connected people. Most of all, go away.
Keeping my eye on moving the ball down the field toward eradication, I was mortified.
The Kellers are not above criticism just like I’m not above it. Neither is anyone else, including Lisa Adams, who chooses to tell her story publicly. I have read criticisms of the Keller pieces from Pink Ribbon Blues and After Five Years that I find very fair and productive. Mostly, though, I’ve read that the Kellers are morons, unworthy of the title “writers,” and should clam up.
People criticized the Kellers for speculating on Lisa’s motivation on twitter, then speculated on the reasons why the Kellers wrote their pieces. It would be funny if it weren’t all so infuriating for everyone involved.
I plan to take up some of the issues Mr. Keller raised in his piece, but for now, I ask all advocates to think about the real opportunities that are open right now. There are apparently enough receptive ears to justify op eds in two major newspapers. Think about how the casual reader will react to the personal, nasty comments we are flinging out in response.
Answering what you think is a lack of kindness with utter unkindness is not only counterproductive, it’s simply wrong.
We can do better. Much better. We have to do better.
Well, I had an interesting week.
Background: My kids attend Catholic school. I struggled with the decision a decade ago – incensed by the abuse scandal and knowing full well that I am out of step with the Catholic orthodoxy. I knew I’d have to bite my tongue, but for me it was the right decision. Really right, in fact. Probably one of my better ones. In case you didn’t know this, Catholic schools teach evolution, a heliocentric universe, compassion, environmentalism, and critical thinking skills. Conversely, they don’t teach that non-Catholics are hell-bound, nor that kids are evil little creatures who must be beaten into submission.
Like all schools, around 5th grade they start talking about reproduction. Between then and 8th grade, the talks become less about mechanics and more about chastity. It’s fine with me, I think chastity is the only appropriate choice for that age. Once a year, an organization comes in to teach class for a few hours. Other than these classes, they are an organization that tries to talk pregnant women out of having abortions, so when they have their parent meetings, I just roll my eyes and ignore.
See, I think me and the church have agreed to disagree on this point. My kids hear the standard church lines, and they hear my opinions; someday they will make up their own minds.
But this week I was pushed over my thin line. The organization told the kids they were filming their presentations to be used for training kids outside of the geographical area and that the parents needed to sign a permission slip. I asked the kids how they felt about it, being a sensitive topic and they were fine with it, so I prepared to sign.
Then I read the form, which was their boiler plate media release form, I suppose. It gave the organization the freedom to use my kids’ images, words, or paraphrases of their words in any way they wanted. I suppose this would include fund raisers, billboards, television commercials, or anything else they might dream up. I had two options — sign it to give consent or check the box that says, “no and I’d like to talk more about it.”
I went from quietly offended to full on rampage when I looked at their website. On their website, they cite “evidence” of a link between abortion and breast cancer.
This isn’t the first time I’ve seen this. Unfortunately some groups that want to ban abortion spread this complete lie. This page was particularly egregious in that in cited cancer organizations that, in fact, clearly state that there is no link between the two.
This goes beyond offending my sense of lie vs. truth. It’s harmful for two major reasons.
To me the greatest and sickest irony is that these lies, and their continued spread, hurts families this organization pretends to protect. How exactly is subverting progress toward ending breast cancer pro-life?
No need to respond – I already know the answer.
I gulped hard, acknowledging the real potential for blow back against me and my kids. I got the word out on facebook and contacted the school with this information. I’ve been shouted down by my local pro-life mafia in similar situations, leaving me with the understanding that removing access to abortion is not just the most important goal, but that it supersedes other priorities, like curing breast cancer.
However, I am so thrilled to report that my message was received with love and respect from almost everyone, certainly from the school.
I’m not going to betray any confidence here, but I think I cracked open a window on this one. There were multiple families who said no and I think changes may come, even if I don’t see them. It was a pebble in the still pond.
I don’t think I’ve ever met with such success in my advocacy.
Why did this one work?
I think it’s because I stuck to the facts, came at it with love, and have restrained myself from being a loose cannon (mostly) over the last eight years that my kids have attended the school. I’ve built up capital over the past few years and have worked to find common ground.
I asked everyone involved, no matter what the point of view on abortion is, whether we can agree that it’s not ok to lie to further your own agenda.
And holy wow, people agreed with me.
I know I might have put too much credence into this one tiny victory, but it made me believe change is possible.I felt like It’s a Wonderful Life’s George Bailey, running through the streets after he’s realized he matters. You can be Potter saying “and a Happy New to you, in jail.”
A friend was telling me about a relative of hers who loves to hang on to old grievances, making holiday get-togethers an unpleasant event to behold. It sounded like a really unfunny version of Frank Costanza’s Festivus. While I felt for the friend, an alarm went off in me. I have that grudge-holding relative within me and without proper care and feeding, could very naturally become the bitter person Bob Dylan describes:
While one who sings with his tongue on fire
Gargles in the rat race choir
Bent out of shape from society’s pliers
Cares not to come up any higher
But rather get you down in the hole
That he’s in
I was perversely inspired by my friend’s story to stay vigilant this year about Katie’s Bank Of Grievances. My inspiration is an ee cummings poem.
let it go – the
smashed word broken
open vow or
the oath cracked length
wise – let it go it
was sworn to
let them go – the
truthful liars and
the false fair friends
and the boths and
neithers – you must let them go they
let all go – the
big small middling
tall bigger really
the biggest and all
things – let all go
so comes love
It came from another tarot draw, this time a singular one – What’s my guiding principle for 2014? The card, not the first time I’ve drawn it in response to similar questions: Shaman of Swords.
From the book:
Let what you see and feel be said; don’t hold back what you know to be true. Through the emergence of your insights, fired by the passion of your heart, you have the power to transform reality.
This is a comfortable message for me, one that affirms that I am on the right path. Last year (see CULTIVATE) I managed to extricate myself from a series of unhealthy relationships in which I felt obligated to constantly prove my own worthiness. I allowed my own voice to be taken hostage. Having paid that ransom, I’m ready to get back to speaking from my own sense of truth rather than allowing my words to be herded like sheep.
Look out reality.