Tuesday, September 9, 2014

Pinktober, Metastasized

For weeks now, I have been getting emails from PR companies that start like this,

Dear But Doctor I Hate Pink,
With Breast Cancer Awareness month fast approaching, we wanted to take the time to introduce you to our product, the Pink Crapola JunkYouDon'tNeed.  10% of the sales of this very special Crapola will go towards Useless Awareness Charity Du Jour, which we are proud to say will do absolutely nothing to help any actual breast cancer patient, but which will certainly line our client's pocketbooks with profits as well as giving them a tidy little write-off.  Will you please promote it without even a review sample, so that we can have some free advertising too?  After all, it's for your kind.
Sincerely,

WeDontCareAboutYou, Inc.


Pinktober used to be only in October, but now, like all good cancers, it is spreading throughout the rest of the year, metastasizing, taking over, strangling functioning parts, and making cancer patients vomit all year round.

Not only does the pink takeover disturb metastatic breast cancer patients, who understand that this cause marketing is not their cause, it also disturbs many knowledgeable early stage women, who are reminded of their suffering year after year, and who also understand that the money does not go towards a cure.  And, of course, when the White House is lit pink,  people with other cancers, such as lung, colon, and ovarian feel like the only important patients are breast cancer patients, and that our discomfort is elevated over theirs.  They don't know we hate it too.

I am trying to be the chemotherapy to this metastasis, slowing it down or stopping it, and the only way that will work is if we all combine our molecules to gain power. We must refuse to cooperate in the big pink scam, refuse to buy a pink ribbon product and let the companies know why. We must share information about mets and the uselessness of the idea of awareness with everyone we know. We have to beat them at their own game.

This October is the first one in years that finds me in decent health, thank you Perjeta, Herceptin and Dr. B.  In the coming month, I'll be devoting this blog and my facebook page to sharable information about metastatic disease as well as facts about how the pink charities do not help save the lives of breast cancer patients and in fact, seem to be doing harm.  Along with other metsters, I am going to point out foolishness, hypocrisy, greed, lies, insensitivity, and what I call "the don't get it itis".

Sound exiting?

Let's start now, shall we?

I was sent this little nugget of awareness by a facebook friend. Because she may be treated at this cancer center, I don't want to name her.  But she was passing by and saw this little gem:



Do you see what that is?  It is a bra decorating contest. "A breast cancer prevention event."   One put on by a hospital, the Cheryl Lindenbaum Cancer Center, to be exact.  For awareness, of course. You can enter the contest and make your mammogram appointment at the same time, because mammograms and decorated bras and contests prevent or uh, make you aware...or ...uh....wait, what?

Aha.  Found a press release put out by the hospital.  Explains it all.

According to Anne Campbell-Maxwell, Director of Oncology Services,  “We are asking people to decorate a bra as a way to tell their breast cancer story, whether it’s their own story or the story of a friend or loved one. The bras will be judged the night of our big event. It’s a fun night that we hope will educate the public on prevention and early detection of breast cancer.’’

I don't know what to say.

Wait, yes I do; you know I do.

Somehow, this hospital decided decorating bras is a breast cancer prevention event. This is alarming news to those of us who have preferred plain beige and black bras.  No wonder I got cancer. Damn. Why didn't I go for the sequined ones?  I might still have both breasts and have avoided five years of awful treatment (so far) if I had just gone blingy.

But hey, at least I can tell my cancer story, right?   I can jam five years of treatment and a terminal diagnosis into one 36C decorated bra. (As long as I don't forget the straps.)   At least the bra is my (former) size so maybe I still have a few tucked away. Hmmm... I'm not sure how I can get the c-diff sepsis in there though, or the liver surgery.  Some stories require a 38DD.

All jokes aside, it is infuriating is that this woman, a Director of Oncology Services, (whatever that is)  says they are trying to educate women on how to prevent breast cancer.

Okay, Anne. How?

Um hmm, that's what I thought.

Prevention is a Myth
Hospitals should know there is no way to prevent breast cancer.  Saying otherwise is an irresponsible statement, and it's no mistake by this cancer center, it has been going on for 3 years.

The fact is, science does not know what causes breast cancer.  Sure, there is the nasty BRCA genes, which can strongly indicate that breast and ovarian cancer might be headed your way, but even in that population, not everybody gets cancer.  For the vast majority of us who do not carry the BRCA gene and who got breast cancer anyway?  It's a mystery.   Despite shady websites telling us otherwise, it is not what we ate or drank or where we lived, it's not chemicals we inhaled, or petting our cat too often or wearing plain bras.  

Nobody knows.  It's likely a complicated mix of all of the above, with a dollop of bad luck.  Cancer, my friends, has been around since the dinosaur days and they have found breast cancer in Egyptian mummies.  It's just as wrong to state you know what causes it as it is to pretend that the cause is from chemicals in your hair gel (so buy my natural gel). It is infinitely worse coming from a hospital rather than somebody trying to profit by selling you a book, because the level of trust is much higher.

Location, location
It is peculiar to the breast cancer world that the location of our cancer becomes the focus of the cancer, over the disease itself.  So yes, charities decorate bras for cancer, and men try to motorboat women's boobs for cancer awareness (ha!), and people make breast shaped cupcakes.  This all trivializes the cancer experience, especially for those of us who have mets.

Nobody ever made a liver cupcake for me.  Maybe it's because it's hard to cut a cupcake in half. Thank God my surgeon could do it.

After 7 different chemos, having half my cancerous liver removed, gamma knife radiation to the remaining half, sepsis,  and a few other drugs and surgeries sprinkled here and there - after five years of being truly, horribly sick, I can tell you that it is not a cute, fun little disease that you can play with or have a party about.  Breast Cancer is the most trivialized disease in history. Precisely because of events like these, many people don't understand that we are still dying.

Including the Director of Oncology Services at a hospital?  Why is a hospital associating bras with breast cancer?

I wonder if this cancer center does this with other undergarments in relation to other cancers?  After all, their tagline, "Jazz Up your Foundation" fits many cancers.

Do they have a tighty whitey decorating party for anal cancer?  Let's put a little brown glitter around the back end of the underwear, hey?  Maybe some red sequins to show one of the signs that cancer lurks in that area?  Yeah, let's tell that cancer story through decoration.   Or, how about decorating a banana hammock for testicular cancer?  I'd cover mine with ping pong balls, perhaps using a bit of blue embossing powder.  Of course, the obvious choice is decorating a hat for a glioblastoma.  Wouldn't that be fun?  I think I'd pick a fedora, cover it with grey sequins and then use the aforementioned glitter, this time in red, to add in a tumor.  I would add some streamers to symbolize the seizures that are sure to come.

How delightful!

When so many women's bras in real life are decorated with nothing but a prosthesis, a hospital should be a bit more careful about what they decide is "fun," don't you think?

Winning!
It's not only a party to tell one how to prevent breast cancer, it is a contest.  I wonder what the prize is?  Oddly, they don't say.

If you turn in your decorated bra (don't forget the clean margins edge decoration!)  and sign up for your mammogram, and it turns out you have cancer, will they give you half your bra back?  They say you are allowed to use glue, but what about glues with chemicals?  I mean, they have the prevention secret, they should know if that is safe or not, right?  Maybe your prize is a free PET scan; certainly, that is valuable.

If this hospital or charity relies on donations and they are spending money on this, is this the best possible use of funds?  If I donated to them, or their partner charity, Support Connection, I would think twice.

Questions
How does decorating a bra help help people become aware about how to prevent cancer, Ms. Campbell-Maxwell? Because, I truly do not get the connection.  Why bras?  Why not a canvas, or a quilt, or a scrapbook page?  Cliche much?  What about men who get breast cancer, do they still tell their story with a bra?  Or are you totally leaving the men out?

We know you can't educate on prevention because nobody can prevent cancer.  You can talk about screening and early detection, but what do you think about educating people on the tragedy of over-treatment?  

What does a Director of Oncology Services do?  Can you get me a pedicure while I'm having my infusion?  If you are responsible for patient support, what do you imagine metastatic women who have suffered for years and are dying think about your bra display party?

That their own hospital thinks they could have prevented their cancer, maybe?  That you think they are at fault?  Supportive.

I posted this event on my facebook page, and within minutes after posting, these are the words that appeared: sophomoric, patronizing, crass, disrespectful, undermines the real pain and suffering of women, ridiculous, out of touch, shocking, tasteless, absurd, tacky, stupid. And that was just the start.

Those words would apply to anybody throwing this sort of event, even for charity, even for a worthy charity (this is not a charity event), but there are times you give credit for ignorance mixed with a big heart and you let the big heart win.

When it is a hospital, it is inexcusable.  Hospitals are supposed to be about science, and include ALL patients.

Apparently, it's all about the breasts, even in a hospital, even from the Director of Oncology Services.   It is not about a tragic disease that has taken good people:  my friends, your mothers, your relatives, loved ones, sisters and brothers.  It's boobs and bras.  When will the trivialization of our very real disease end?  Who will be brave enough to stand up and speak up and say enough is enough?

You, that's who.

Welcome to Pinktober, Metastasized.






25 comments:

  1. So very glad you're tackling this, your post is hilarious, but also very, very true. Thank you.

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  2. Yes, absolutely agree 100%. Beyond ludicrous, patronizing, and demeaning!

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  3. Wow, you are truly gifted! Well done.

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  4. Thank you again for expressing the view of so many genuine people!

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  5. Ann, just wondering if maybe theres a way to set up a foundation of your own, to share the real info, and put the money where it really needs to go....representing metsters and all kinds of cancers and developing treatments. You do such a great job of informing us - I'd like to help nix the idea of Pinktober and lining pocketbooks - and help those who need it, however they need it, and make sure the money goes where it should. Just a thought...? Ann Silberman Foundation could be such a legacy for what you've been through and to correct the wrongs that have ensued with glorifying breasts and breast cancer...and all the darn pink :) Jenna Oliphant

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    1. Thanks Jenna. I wouldn't even know where to start with that. My precarious health is always going to be an issue as well. But it's a fantastic idea. Other charities advocate for metsters, such as MCBN, and others watch for problems with pink, like KomenWatch and Pink Ribbon Blues. I will just keep posting here and trying to point out all I see and hopefully people will help me by letting me know, writing letters, sending emails and most importantly - do NOT buy a pink product and let the companies know you won't be participating. Will be helping with that some in October.

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  6. Wonderful post, Ann. I get a ton of those emails too. Obviously, most have never read a single post on my blog... I am looking forward to reading whatever you put out there this October and beyond. Get loud, girl!

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    1. It's lazy. We are listed under "women's health/cancer" and people just assume they know our position. The very few who actually read media section where I explain I don't support pink, and know my stance get consideration - the rest get the delete button.

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  7. I always find your articles so witty and articulate. This is outrageous that cancer treatment center or a hospital would do something this disrespectful and dare I say, sexist. It is hardly a leap for womens liberation to do such a thing. Definitely not a great form to use to make people aware or to try and raise money for a cure. There is definitely no way to teach prevention! And further more, there is not even a prize offered for this contest. This seems back assward.

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    1. It's crazy all around. Meaningless except to enrage. Last year they only had 20 entries so whatever they hope will happen - is not.

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  8. Excellent post, Ann. You said it perfectly. Breast cancer is filled with suffering, and this hospital's "party" is beyond pathetic. I wish I could say I was shocked, but I'm not. I get plenty of these kinds of weird e-mails too, and they come into my inbox earlier and earlier each year.

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    1. I just read in my local newspaper about a cancer center that is doing it right, Sutter Cancer Center. People make quilts that are raffled off and the money is used for services others can't afford (I guess.) . The quilts are beautiful and hung in the oncology ward. It's a silent auction and they say the day the quilts are taken down is sad because they brighten up the place. They are lovely and of all different styles. I loved a Americana one.

      But there is no pink, no specific cancer, no sly allusions to the garment worn above the area if cancer growth, no hidden sexuality or cutesyness - none of that. Just gorgeous quilts and a lovely way to raise money.

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  9. I. Love. This. Post. *stands & applauds*

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  10. Wish I could give you the biggest hug right now. Thank you for writing this so vividly and honestly. I am an oncology RN and before I quit my nursing job in a hospital last fall, one of the things they did on my unit was to display a framed pink bra that was decorated looking like Hostess snowballs, you know those pink coconut covered things...I commented that it was offensive, but they didn't get it. Not at all. Let me tell you, people who are hired to positions like Director of Oncology Services are more likely to be sociopaths than caring human beings who want to improve life for people living with cancer. They are all about the money, that is it, they truly don't get it. That is why I left corporate health care and started my own business so I could give people what they want and need, not pink fluff.

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    1. Wouldn't surprise me if hostess came out with a breast cancer snowball. It is truly disgusting. NO other disease gets treated like this.

      If you did something this disrespectful in regards to AIDS you would be boycotted.

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    2. Sociopaths?! Really not a fair thing to say and brings the discussion to an impossibly low level.
      You can't teach others how to do this the right way when you make nasty, broad strokes comments like that. Cancer sucks. Over many years we've all been bombarded with numerous appeals for money and we've all been asked to participate or purchase items in the name of one cancer or another. I think that the dialogues are important ... first and foremost is the one about cancer and research and cures and caring and then also the one that intends to educate consumers, thereby helping them understand how diminished (all) cancer patients feel about silly contests or when they see a sea of pink every October.

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  11. Where's their "Decorate your foundation" for testicular cancer. Men could decorate jock straps.

    I promised myself I would ignore it all this year because last year I got into an email fight with a woman that owns a bakery and made nipple cupcakes. She didn't get it even after I linked to Ann's great posts about this.

    I'm going to call the hospital tomorrow to make sure they know how we feel about this crap.

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    1. When there is money to be made, nobody says no. That's why we have to try and get cancer patients, our friends and loved ones on board. We need to make sure everybody knows we want NOTHING pink.

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  13. Ann, I work with a breast cancer org and at first didn't understand where you were coming from. But after reading your article, it completely makes sense and you are absolutely right. I am so glad you wrote this because now I have a new perspective that I can share with others. My question -- as a breast cancer org, what can we do to help? What would you like to see them put in place, change, or remove? We don't have events like bra-decorating or "boob bounces" (I had no idea this was even a thing!), but we do have an annual Survivor Brunch where fighters & survivors can have a free lunch & dessert with a DJ and fun prizes for answering trivia questions. What are your thoughts on that? What could we do differently?

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  14. Courtney, thank you for asking.

    Many of us who are metastatic do not like the "survivor" terminology. The truth is, we are going to die of cancer and don't consider ourselves survivors. We consider ourselves as "living with cancer." So you are leaving a large number of women out when you have survivor brunches and events.

    And, the term "fighters" also implies that there are losers to the fight, which there are, so we losers won't be attracted to your event. Many women, like me, have been, as you would say, "fighting" for years and we know we will lose the fight. Yet we continue on anyway. Again, we aren't fighting, we are living with a terminal disease.

    I don't recommend you focus on only metastatic women, and I don't recommend you leave us out and use terminology that applies only to early stage/non-metastatic women. What we need in cancer world is inclusiveness.

    The Survivor narrative is very compelling. It is lovely to think you went through awful treatments and came out the other end a winner. However, most of us come to understand this isn't the true feeling. Those of us who become metastatic, like me, have to learn how to live with a terminal disease. Those who don't still have to learn to live with fear and discomfort, and the survivor mentality makes them feel like they have to live up to the expectations of others. Some are in pain for years, or have fatigue for years, and they know they can relapse but they have to live up to the Survivor trope.

    So I don't know why you can't keep it simple. Have a breast cancer brunch with activities that all women with cancer will appreciate. The DJ and trivia questions and that kind of thing makes me think you are celebrating survival and leaving the metsters out. So maybe a health fair especially for cancer patients is much more in line with what we experience. Seminars on healthy foods, tastes, eating when you have no appetite, something like the ACS feel good, look better program (which I've never heard a patient say they disliked), information about disability or death planning as well as information about relapse and what it's like and how to try to put it past you (even though it's difficult) is more in line with reality. Dressing around mismatched breasts, raising children with cancer - there are a million things you can do to gain interest. A brunch is meaningless.

    The point should be helping people either move through this experience as early stagers or accept it as metsters. Treating it like a party that only the best survivors can go to is insensitive.

    And, it goes without saying money should go to research and patient support, NOT awareness.

    The graves are full of people who had positive attitudes and once thought of themselves as survivors. Parties leave people like me who are not expected to survive out. Our path is difficult and things like this make it more difficult. We are the losers and we know it. And you want to put that in our faces.

    Especially with breast cancer, nobody really knows who will be a survivor anyway so these parties make women who have not had relapses feel good about themselves for sure, they are warrior women! But they know inside it is a falsehood. They could be next for mets.

    One of the trivia questions should be what percentage of metastatic women living now were diagnosed at an early stage? The answer is 96%.

    Be inclusive, remember that not everybody survives, that we can throw our own parties and information about fears is more important and respect what metsters go through every single day, KNOWING they will lose the fight.

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  15. My sister pointed me to your blog yesterday. She wondered whether the hospital and cancer center you were discussing was the one in my community ... and yes, it is.
    My sisters agonizing journey over the past two years has been a wake up call -- not just for her, but also for me. From the shocking diagnosis through BRCA testing, chemo, radiation and now quarterly scans ... life is different and the way we look at all things breast cancer related has changed. There is little tolerance for those who make mistakes/say stupid things/design really bad contests or events ... because we somehow assume that they don't care ....
    I get it ... I do. I went nuts when the dancing doctor, pre-mastectomy video was applauded as brave and with "atta girl ... now YOU have got the right attitude" cheers. I was furious .... and I wasn't shy about it. Some agreed with me while others thought I was being harsh and judgmental .... and I am not a blogger with a huge audience ... my 'followers' are few... mostly just facebook friends.
    I tell you this because the Cancer Center you wrote about has made it possible for women to find complete breast care in one place. The family of CL donated the money to make the center a reality. Her husband, sons and brothers wanted to make it easier for others to go through the grueling process than it was for Cheryl. She was diagnosed at 39 and died 10 years later; years spent traveling far and wide for care. She left behind a family that adored her and a community that she supported her entire life.
    I tell you this because I read and re-read your post and I get that you are pissed ... I see what you hate about the bra decorating and why. What I don't understand is why you didn't use it as an opportunity to educate the oncology director or the hospital board. Instead you jumped to the conclusion that all connected with the hospital are stupid, hateful and disrespectful. You put that out there without thought (or so it seems) and I think that you missed a teaching moment. I am not a hospital employee but I go there every year for my mammos, etc. They listen and address my concerns and they follow up with calls if I don't schedule my appointments promptly. Yes, I now agree that the contest is truly misguided; a really bad idea ... but I honestly never thought of it as offensive before yesterday ... and I'd guess that my pre-cancer sister wouldn't have either. I don't know a lot about the event, but it's not a huge event and it's not (as far as I know) a money maker. But I want to know the whole story, so I called this evening and left a message. I also sent an email before writing to you. Last, I spoke to the main donor and shared your blog with him. He and the other donors are not in medicine and have nothing to do with programming, but I know that they will bring this important issue to the attention of the medical staff and the Board. The outcome can only be better and more appropriate opportunities for breast cancer education.
    In closing I'd like to say that your writing is powerful and honest. It also suggests that no one on the 'outside' wants to understand or can understand what metsters are going through; that we have no compassion. I'm here to tell you that people want to be supportive, helpful, loving, caring and appropriate. Human beings often say and do dumb things ... but most of us are lucky in that we are not in the spotlight or in print. I'm glad that you and others use your voices to affect change and point out when we miss the mark. Give us a chance to live up to expectations; trust that we truly want to do better. All of us dream of better days ahead and exponential advances in cancer care. Every day I wish for my sister to be hopeful about her future. I want her to feel loved and joyful .... I want her to make plans for many decades ahead. I also want her to know and believe that people care so that she ... and you and others can teach us what you sadly live with every day and know too well.

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