Spare A Pair……..

IMG_4437 (1)“Save the Tatas” “I Love Boobies” “Feel Her Up” “No Bra Day” – all slogans for fundraisers or awareness campaigns for breast cancer. Designed to be cute and make us giggle like 12 year olds, they seem harmless enough on the surface. However a lot of breast cancer survivors find them very offensive. They see them as sexualizing breast cancer and objectifying women. For me personally, these slogans took on a whole different meaning after my double mastectomy. My breasts were amputated to save the rest of me, so campaigns like this kind of fall flat. (yes, pun intended)

Supporters say things like “it is just a joke”, “we just want a cute slogan to draw attention to the cause”, or “we are raising awareness and making people laugh”. “What is wrong with that?” “You are taking this way too seriously! Lighten up!”

I’ve seen several well written articles online on this subject. So rather than rehash all of the reasons why I don’t like this trivialization of a deadly disease,  I propose a tit for tat. If “save the tatas”, “feel her up” and “I love boobies” are acceptable ways to refer to breast cancer, we should have similar campaigns for other cancers.  I have a few ideas:

  • For testicular cancer:
    • Spare A Pair
    • Save The Nuts
    • Jump for Family Jewels
    • Free The Boys (commando day for awareness)
    • The Brass Ball (I’m picturing tuxes, floor length gowns, champagne)
    • Make Him Cough (self exams/early detection)
  • For prostate and/or penile cancer:
    • Spread ‘Em (early detection)
    • Save Woody
    • I Love Dick
    • Boner Bowlathon
    • Big or Small We Love Them All
    • Free Willy
    • The Weiner Walk-a-thon

Giggling yet? I had a jr. high boy help me with some of the slang terms and he is still laughing.

  • For colon and rectal cancer:
    • Don’t be a butt
    • Back Door Ball
    • Take a Seat
    • Party for Poppers

Still funny? Because every body poops and the jokes about it started in preschool, but we still laugh.

  • For oral/throat/tongue
    • Do the Tongue Tango (for early detection)
    • Chug for Cheeks (pub fundraiser)
  • For Lung Cancer
    • Take a Breather (yoga or meditation maybe)
    • Get Some Air (Xtreme sports)
  • For Skin Cancer
    • Get Naked (early detection)
    • Pale is Pretty (prevention)
    • Mole Mambo

Not as funny right? It is getting harder for me to come up with cutesy sayings, and what I can come up with is getting more uncomfortable. Why because as I go down the list of body parts I’m getting to those that aren’t taboo. In our culture body parts associated with sex top the list of things we aren’t supposed to talk about. We hear them a lot more than we used to and we are all getting more comfortable in our own skins, but we all get at least a little embarrassed or giggly sometimes talking about sex. Breasts top the list, especially in the U.S. where we have this weird fascination with them paired with the social norm of keeping them covered. Men’s sexual organs also invoke giggles, though maybe not as much ogling. And then comes the digestive tract which we all started joking about sometime not too long after potty training and admit it – we all still laugh at poop jokes. But once you get to things like mouths and lungs it isn’t so funny because those parts aren’t associated with giggly jokes.

I don’t have a problem with sex jokes or poop jokes or body part jokes in general. But when we take that type of humor and apply it to cancer we are trivializing a deadly disease and often hurting the very people we are trying to help, however unintentionally. I’m sure breast cancer survivors’ feelings on this topic run the gamut from “no big deal” to “makes me rage or cry every time I see it”. After all just because we have the same type of cancer doesn’t mean we are alike in every other way. I fall somewhere in the middle but lean towards “do we really need to do this?” because I know how much pain these silly slogans can cause. For me, joking around with fellow survivors is one thing. Seeing a bunch of people using the disease that has flipped my life upside down as an excuse to drink beer and wear “I Love Boobies” or “I’m A Breast Man” t-shirts is another thing entirely. Seeing campaigns that emphasize things like “Save the Tatas” when I had to lose my breasts to save my life and almost every breast cancer survivor I know had some kind of surgery makes me cringe. Knowing that we are losing 110 people a day to this disease, a fact that never seems to be a part of these type of campaigns makes me furious.  We need to save the people, not their body parts.

People have been raising money for breast cancer for years under various slogans around the word “cure”, probably not realizing how little money was actually going towards research. Now that people are more aware and often understandably angry at being deceived, there seems to be a new movement towards these cutesy sayings. If we can’t use “the cure” anymore, let’s use giggly jr. high jokes. It’s smoke and mirrors hiding the same issues with all of the so called “cure” campaigns. I’ve heard the argument that fundraisers need to be light hearted and fun to get people to participate or that these slogans promote “awareness”. I don’t have a problem with participants having a blast while raising money for a good cause. However the “fun” in fundraising shouldn’t be at the expense of the people we are trying to help, and I can’t imagine anyone who isn’t “aware” of breasts and breast cancer.. The message needs to be clear. We need to know exactly why the event is being held and where the money is going. Research? Treatment? Support? Prevention? If we are promoting “awareness” the focus should be on telling the whole story. The lack of knowledge about metastatic breast cancer is staggering, especially considering how much money is spent every year on “awareness” and “education”.  We need to stop treating this disease like a marketing opportunity.  Breast cancer isn’t pretty. It isn’t cute. It isn’t funny. We need to stop giggling and find a cure.

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We’ve Got The Power……


Wasn’t that a band in the 80’s?

I’ve been doing a lot of research on cause marketing including reading a lot of material geared towards businesses telling them how to go about it successfully. I’ve learned a lot of interesting information. I think as consumers we often don’t realize the sheer number of people out there analyzing our every move. And we are naive about how business works. We personify companies and attribute human qualities to them that often aren’t particularly appropriate. (And yes I know SCOTUS thinks companies are people on some level, but let’s leave that for another day.) We buy something because it pulls at our heartstrings without fully understanding who is holding the other end. But I also think the tide is turning and consumers are becoming more aware of where their money goes. Material directed at marketers is focusing more on best practices, clear communication and transparency. I hope this trend continues.

I’ve read a lot of statistics and one that surprised me is how few people realize that the primary purpose of a for profit company is to make a profit. They don’t exist to do good works. They exist to ultimately make money for the people who own them. Companies that are publicly traded have to make decisions in the best interests of their shareholders. It doesn’t make them evil or good, it is simply the way our economy is structured.

On the flip side, we don’t seem to consider the people behind the logo. All of those people working to earn money for shareholders – they are people like you. They are doing their job. And often they choose a nonprofit to support because it is something they personally feel strongly about. I’m sure there are those simply in it for the money. But a lot of people behind the scenes have good intentions. They are trying to do something good while also ultimately contributing to the success of the business they work for. And they are also a part of the focus of cause marketing as one of the benefits to companies is employee moral and loyalty.

So where does this leave cause marketing? Like it or not it is here to stay. In the past a lot of companies had foundations which provided grants to nonprofits. While I’m sure the intentions of the people involved were often altruistic, from a company perspective the foundations provided good PR, good will among employees and I’m guessing some tax advantages too. As cause marketing has grown, companies are shifting more and more away from simply granting money and toward a marketing strategy tied to a good cause. They see it as a win/win. They get good PR for their brand, increased market share and/or increased profits while the nonprofit benefits also. Nonprofits are having to rethink their strategy for corporate donations as money available through foundations decreases. Both sides can benefit when it is done well. But when a cause marketing campaign goes sideways it can cause irreparable damage, especially to the nonprofit.

Where does this leave the consumer? It depends. If we choose to continue buying things simply because they are associated with a good cause and that makes us feel good, we will continue to see companies that take full advantage of our choice. If we choose to be educated consumers and demand transparency and accountability from companies and nonprofits we can drive the market towards a more responsible model of cause marketing. I read an interesting study on millennials. Written by a marketing firm, it was focussed in how to reach that market, but I found some of the insights promising for all of us. Millenials are more focused on corporate responsibility not only in what they purchase but also in where they work. They are also very vocal about their choices and are using social media to spread the word, both for companies they support, and those they do not. I hope we are all moving in this direction. Ultimately we as consumers drive the market because if we aren’t buying, they aren’t selling.

So how does this tie into Pinktober?  Some of the most cited examples of what not to do are from breast cancer nonprofits. From partnering with companies whose products are directly or indirectly contributing to breast cancer to campaigns that are at best vague and often downright deceptive, we seem to be leading the charge, pink flags flying and no idea who programmed the GPS. We can blame the big pink charities and the executives on both sides (and I admit some of that blame would be well deserved). We can rant about pink washing and awareness campaigns that leave the public anything but aware. We can blame “them”. Or we can stand up and do something about it. Companies can’t use breast cancer to sell more products if we don’t buy them. Nonprofits can’t use our money for things we don’t approve of if we don’t donate. And the companies and nonprofits we work for won’t launch campaigns that anger their own employees and decrease moral. We have the power to change our course. We just have to use it.

It’s time to do better together.

If you want to read more about it, google “cause marketing”. Add your favorite or least favorite charity to the mix and you may find them on a list of examples for successful or unsuccessful campaigns. A research study I talked about was done by Cone Communications and they are cited in a lot of the articles when they start talking stats. Their website has a lot of info intended for marketing types that I found interesting from a consumer perspective. And if none of that interests you, no problem. All I ask is that you spend your hard earned money consciously when buying a product linked to a cause. You can read more about what questions to ask here.

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Please don’t look away……

Today, October 13th, is Metastatic Breast Cancer Awareness Day, the only day of Breast Cancer Awareness month devoted to metastatic disease. I can’t imagine anyone today who is not aware of breast cancer as pink awareness campaigns are everywhere, yet few people know anything about metastatic breast cancer, much less understand it.  I think our natural instinct when something horrible happens is to cover our eyes. We look away as if in some way that will make it go away. Then we take a quick peek through our fingers and close them again quickly when we realize whatever scared us in the first place is still there. We do this literally when we watch a scary movie,  view a news stories about a tragic event or witness someone being injured. And we do this metaphorically when something scares us and hits too close to home. We seem to somehow think that if we don’t acknowledge whatever it is, we will be safe. It won’t happen to us. We don’t think about how much it must hurt the person actually going through tragic circumstances to see us look away.

National Breast Cancer Awareness month was founded in 1985. Every year the number of people marching, running and shouting that we need a cure has increased and the amount of money being raised has skyrocketed, yet 40,000 women and men are still dying every year just in the U.S. In our zest to unite and fight this battle we have somehow forgotten those who are fighting on the front lines. We celebrate and give each other high fives for our progress while pushing aside those actually dying from this disease. We claim we want a  cure, yet less than 7% of funds devoted to research are focused on metastatic disease and only 2-3% are focused on a cure for metastatic disease. We throw our energy into raising money and buy pink products yet don’t actually know where the money is going. We claim we are winning the fight because 5 year stats for cancer in the earliest stage has improved even though 30% of those diagnosed with early stage go on to a metastatic diagnosis.  We believe that there is a treatment or a cure when in reality 98% of those diagnosed with metastatic disease die from it and the other 2% die with it. We want to believe it has become a chronic disease kind of like diabetes when the mean life expectancy from diagnosis is only 33 months and many don’t even live that long.

And when we see someone fighting metastatic disease, we embrace various myths that help us believe that we are safe. That it won’t happen to us. We assume it is somehow their fault. They didn’t get a mammogram. They didn’t take the recommended treatment. They didn’t have a positive attitude. When they speak up about their plight we label them bitter or angry and dismiss them. We try to silence them so they won’t scare those with earlier stages of the disease. We say they are the exception. We hope if we can keep them at arms length we can keep believing that they are somehow in a different category, one we will never join.

When we look away we are not only hurting the women and men living with metastatic breast cancer. We are also hurting ourselves. We are marching around in circles making very little progress towards our goals because we keep turning away from what scares us. Cancer is scary. Metastatic cancer is even scarier.  We need to face our fears head on. The truth is metastatic cancer can happen to any of us. We need to acknowledge it. We need to listen. We need to face those living with this horrible disease, look them in the eye and let them know we see them. We need to listen to them. We need to accept that they are us and we could be them. They are our mothers, sisters, daughters. They are our fathers, brothers, sons. They deserve to be seen. They deserve to be counted. They deserve to be heard. They deserve a cure.

My challenge for you today – click one of the links below and meet them. See their faces. Read their stories. Don’t look away even when their stories make you cry. Learn about metastatic breast cancer. Then give up something this week in their honor and donate the money you save to – the only organization devoted to giving 100% of all donations directly to metastatic breast cancer research. Take a sandwich to work and donate your lunch money. Skip pizza night and eat at home. Watch a movie on DVD and donate what you would have spent on tickets and overpriced snacks. Individually it isn’t much, but together we can make a difference. Pink won’t cure breast cancer. Awareness won’t cure breast cancer. Research will.

To read their stories:

Story Half Told – beautiful stories and photographs of several people living with metastatic breast cancer. Also includes stats from a study showing how much misinformation exists about this disease.

Metavivor – not only a great place to donate, but also to learn about metastatic breast cancer. They are using the #numbershavenames hashtag on twitter and Facebook to tell the stories of those we have lost.

#iamsusan – a campaign started by Kelli Parker. She is posting collages of those living with the disease and those we have lost as well as posting individual stories. She has encouraged others to use the hashtag to tell their own stories too. You can search for #iamsusan on Facebook, Twitter and Instagram, or see Kelli’s posts on her Facebook page or @smellimd82  on Twitter.

MBCalliance has a campaign designed to call attention to the lack of awareness of metastatic breast cancer. You can view the video here. The video includes a fellow First Descents alum Sarita (Trooper) – an amazing advocate who embodies the FD motto Out Living It.

MetUP  – an activist group that organized the die-in today in Washington D.C. has a lot of great information. Their Chorus of Voices is a good place to start.

Please feel free to post links in the comments to other organizations focused on metastatic cancer and to websites or blogs where people living with this disease tell their stories.

#iamsusan #numbershavenames #storyhalftold #metup #metavivor #dontignorestageIV

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I Will Survive…….

Probably the most frequent word people use to refer to my breast cancer diagnosis is “survivor” and I use it frequently too because so far I haven’t come up with something better. When I started this journey I had a hard time defining myself as a “survivor”. I’m a “survivor” in another part of my life and never really embraced that label. I felt like it was a way point but not a destination. I wanted to go beyond surviving to thriving. I didn’t want to be defined by what had happened to me that was beyond my control.  I often tell my kids that you don’t get to choose the cards you are dealt in life, and sometimes you get a really crappy hand. The important thing is how you choose to play the game. Some of the most amazing people I have met received the worst possible hand in one way or another, yet played it so well that when you look at their life as a whole, the bad cards are only a tiny part of a life well lived. Yet some of the people who seem to have been dealt all aces haven’t done much with their lives. I want to be remembered for how I lived – for bringing a little light into this world. When people remember me I want them to do so with a smile. I want the bad things that have happened to me to be a footnote in a really thick book full of adventure, light, laughter and love.

When I was diagnosed with breast cancer I started hearing the word “survivor” and my first thought was “not again!” Then I wasn’t sure it even applied. I couldn’t figure out at what point you were given that label.  At the end of treatment? When you are officially dancing with N.E.D.? At 5 years? At 10? I hesitated to use the term as I wasn’t really sure it fit. Later I heard a few people state that you are a survivor the minute you get the diagnosis. That makes more sense to me. There is a clear starting point with no room for debate. By defining it from diagnosis it no longer appears to be a goal to achieve. If we have the diagnosis and we are still here, we should qualify for the designation. It says we are all in this together. That at least makes it a little more comfortable.

While contemplating this post and having “I will survive…” rapidly attaining ear worm status in my head, I looked up the definition for “survivor”.  I used Google because as we all know, Google knows everything. The definition that popped up surprised me. It really threw me for a loop – “a person who survives, especially a person remaining alive after an event in which others have died”. I wasn’t expecting that. I don’t want a label that is defined by the death of anyone. So then I checked Oxford online as I thought they might have a broader definition that wouldn’t be so uncomfortable and found that google pulled the definition from the first one offered by Oxford. Yikes! Their second definition – “The remainder of a group of people or things”. So kind of the last man standing? I had to stop and really think about that for a minute. I had so many mixed feelings as I thought about all of those with the same diagnosis who aren’t here today. Do I want to have a label that means I didn’t die when others weren’t so fortunate? Do I have a choice?

In the end I decided to do my best to accept the term because I can’t think of another one that is any better. I need a way to talk about myself when I want to convey the fact that I am a member of this club that no one wants to join. I will try to see it as a label that doesn’t define me by my diagnosis but by the amazing group of people who share my journey. When I hear the word survivor I will remember all of those who have gone before. Those who participated in clinical trials that led to the treatment I received. Those who fought to bring breast cancer out of the closet and remove the veil of shame. I will think about all of the amazing people I have met who are not only fighting their own battle with this disease, but devoting themselves to advocacy for all of us. I will think of those with metastatic breast cancer and pray we find a cure in time. And I will think about those who are just getting the news. Those whose world is turning upside down as they hear the words “you have cancer”.

I’m still looking for something better to define this part of my journey. When I take the time to contemplate my identity, there are so many terms that come to mind that help define who I am. I’m a wacky collage of nouns, verbs, adjectives and even a few adverbs here and there. Some of the words used to describe people affected by cancer just don’t seem to fit. They mess up my collage as if someone spilled paint on it in a color I don’t like. I laugh too much to feel like a warrior. Fighter seems to make my journey a contest with a winner, a loser and a final bell. Cancer patient reminds me of chemo and I get queasy just thinking about it. But I think I can give “survivor” a small inconspicuous place up in the corner almost but not quite hidden from view. I’ll write it in a pretty font in a color I like with a border around it to keep it contained. And I’ll keep searching for a better word. If you think of something, please let me know. If you see me out and about, just call me Trip.

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Get Things Moving for Pinktober?

IMG_4403For my first Pinktober product review I want to feature a campaign that struck me as so wrong on so many levels that I couldn’t figure out whether to laugh or cry. I first saw it on Facebook posted by a breast cancer advocate. Then I saw it in my local drugstore. I’m not even sure where to start with this one, but here goes……

(The ………… stands for “insert your own poop joke here”)

Donation: $100,000 no matter how many products they sell. Your purchase will not increase or decrease the donation. It might however ………………………

How many are being sold? I was unable to find out how many boxes they are producing but did find a figure for dulcolax 2013 overall revenue of 150.3 million. That’s a lot of laxatives! ………………………..

Which charity is receiving the donation? Susan G. Komen …………………….
Is the pink product comparible to the regular version in price and/or quantitiy? Some versions contain less product than the regular version. One store had a bonus box that contained more. Prices varied by store. Sometimes more for pink, sometimes less. ……………………..

How does the pink version differ from the regular product? The pink box is marketed to women. Evidently that is the norm as the generic version comes in pink also with no reference to breast cancer. The active ingredients are the same as the regular version but the inactive ingredients are different because the pink box contains pink pills……………………

Is this product a good fit for a breast cancer campaign? I don’t think so. One of the many side effects of cancer treatment is constipation and/or diarrhea. It was bad enough going down the digestive health aisle without having to wade through this kind of cause marketing………………

Pink won’t cure cancer and I can’t imagine it will make the laxatives any more effective. I think the only benefit of this campaign is the sheer number of poop jokes it will generate and I hope that is not their intention as breast cancer is no joke. I’m choosing laughter over tears and trying to picture the field day they would have on late night talk shows with this one. If you care to join me feel free to post your suggestions in the comments.  Kind of a MAD LIBS for Pinktober. Bonus points for an over all ad campaign slogan.

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Pink Ribbon Products – Where Does the Money Go?

IMG_4421Cause Marketing is Not Philanthropy is a great article from Pyschology Today explaining how cause marketing actually works. It applies to all cause marketing, not just the pink version. Companies do not enter into cause marketing relationships unless they believe they will at least break even, and often unless they will increase sales and/or profits. All of the pink merchandise that you see every October is the product of cause marketing.

When you see that pink ribbon on a product and it pulls on your heartstrings, take a minute to see where your money is really going.  If you really love it and money going to charity would just be a bonus, go ahead and buy it. But if you are purchasing it because money is going to charity, make sure money is actually being donated and that it is going to a charity you support. Here are a few questions you should ask when looking into a particular product. I focus on Pinktober but this applies to other causes as well.

1. Does any money from the sale of this product go to a breast cancer charity? Sometimes they slap a pink ribbon on a product to promote “awareness” with no money donated at all.

2. If the company is making a donation how is it structured? Is it a flat donation no matter how many products are sold? Is it a set amount per item? Is there a minimum and/or maximum donation?

3. How many items are being produced and sold? For instance if a company is donating $1 per pink widget with a maximum donation of $100,000 but is producing 1,000,000 pink widgets 900,000 people are buying a pink widget without any charity benefiting.

4. Who are they giving the donation to? Does the company clearly state which charity they support or cite “breast cancer” in general? If they name a charity, what does that charity do with the money?

5. Does the pink product cost the same as the regular version? Or are you paying a premium in overall price and/or receiving a smaller quantity? For instance the above pink widget costs $10 and the blue one costs $9. So the company is making $1 more on each pink product as well as getting the full profit on 90% of the pink products they produce.

6. Are you tempted to buy the item because it carries a pink ribbon and you want to do something to help find a cure? Would your money be better spent donating the extra cost of the pink item directly to the charity of your choice? Or is this pink item something you would buy anyway? Is it offered at a good price so any donation from your purchase is simply a nice bonus? Or maybe you just love pink?

Cause marketing is not all bad. But it is not philanthropy.  Sometimes the campaign is designed so the company breaks even and the charity gets a big donation. Sometimes the company even eats some of the costs of the campaign. Sometimes the company profits far more than the amount that they send to the charity through increased prices/reduced quantities, a maximum cap on the donation and increased sales to people who pay more because they believe their money is going to charity. Proponents of this type of marketing campaign see it as a win/win. The company sells more products and the charity gets a donation. But all too often the company benefits much more than the charity and the consumer has no idea where their money is really going.

I’ll post some specific examples throughout the month. If you find a pink product and are curious – see what you can find online and post it here. I just did a little research on one I’ll post a little later that is so wrong on so many levels that I can’t decide whether to laugh or cry. Stay tuned!

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This Is My Fight Song…..

For my second post on the language of breast cancer I want to focus on some of the terminology we use when talking about those who have received a cancer diagnosis. Before I get started, please know that I am not doing this as a criticism of how anyone refers to their own cancer journey. We are all different and draw strength and hope from different things. I’m a bit of a language nerd and often notice how the words we use affect others perceptions, sometimes in ways we did not intend. Words can be very powerful, but sometimes they are just words. Tonight I used a lot of them. I am sending them out on a wing and a prayer hoping my message shines through my struggle to find the words to convey it.

We’ve all heard the slogans and campaigns regarding cancer, particularly breast cancer and most often in October. I never thought much about them. I heard words like “Winning the Fight”, “Fought to the end”, “True Warrior”, “Won the battle”. The list goes on and on. Language of war, fighting and competition is common in our speech in general and particularly when we refer to cancer or cancer survivors. I never really thought much about it before I got my own diagnosis.

During those first few weeks after diagnosis I started hearing word like “warrior” and “fight” in reference to me and while I knew everyone had the best of intentions, those words didn’t resonate. I didn’t feel like I was fighting or winning anything. My world was falling apart and I was trying to do anything I could to shelter my kids from the storm while getting the best medical care I could find so I could live to see them grow up. I was making decisions about treatment, planning a cross country move and then enduring a double mastectomy all during October 2013. Inundated with pink ribbons and pink products, I was overwhelmed, scared and confused. With people I knew well, whatever language they used to talk to me about my diagnosis, I felt the love and support come through. But with people I didn’t know, I had a hard time responding.

After my pathology report came back my status was changed from 1a to 2b and chemo and radiation were no longer optional. Over the course of treatment I went completely bald, lost my eyebrows and lashes, lost weight to the point it scared me, then gained even more than I lost. I barely made it to the chemo finish line only to face more surgery and then radiation. Throughout the journey I was told that I was a “fighter”, that I would “beat this”, that I would “win”. I always felt uncomfortable with those labels but could not put my finger on why I felt that way.

Now two years after diagnosis and one year after active treatment I have a better understanding of what made me so uncomfortable. I don’t have a problem at all when other people use those labels for themselves. I know a lot of people draw strength from that imagery. And I don’t take offense when people use that type of language when referring to me as I always look at the intentions behind it rather than the choice of words. But I do have a hard time figuring out how to refer to myself.

That uncomfortable feeling I get when someone refers to me as a fighter – I think it is because in a battle or a competition or a war there has to be a winner and a loser. I don’t feel like I have won anything. The further I go on this journey the more I realize it will never really be over. Hopefully I will be dancing with N.E.D. for many years and die peacefully in my sleep sometime around my 110th birthday but in the meantime I will live with the side effects of my treatment and the knowledge that while my particular type of breast cancer does not often metastacize, it sometimes does even years after initial treatment. For me winning the fight implies that I am done with breast cancer. I got a clean K.O. and walked away the victor. Reality for me is that breast cancer will be my companion in this journey in one way or another for life. It doesn’t define me. I don’t spend a lot of time worrying about it. But it will never truly be gone.

I also have trouble using the language of war for my cancer journey because when used in a broader context, it has had an unintended effect. When we talk about cancer using terms like fight and battle and win we are placing simple either/or parameters on a situation that really requires something much more complex. Winner or loser. Victor or vanquished. Conqueror or conquered. When we say we are “winning the fight” the implication is that someone or something is losing. And while you would think the loser would be cancer, in reality the loser so far has been the metastatic breast cancer community. The unintended consequence of using a win/loss paradigm is that the general public does not understand much if anything about metastatic disease. They believe that even stage 4 breast cancer is curable and have no idea that the mean life expectancy from diagnosis is 33 months. Our society has latched on to the idea that we are winning and left our metastatic sisters and brothers by the side of the road in our victory march. Marketing blurbs, tweets, campaign slogans all boil a very complicated situation into sound bites that don’t tell the whole story. Everywhere we look we see a sea of pink, smiling faces, celebrations. So we must be winning? Right? Add to that the campaign that early detection saves lives and the unwritten implication is that if you have metastatic disease, you must have done something wrong. You must have waited too long. You must have skipped your mammograms. You must have refused treatment. You didn’t fight the good fight.

The language of war also plays into the underlying fear of death that seems to be part of the human experience. The word “cancer” invokes images of bald, emaciated, dying people.  It scares us. I think we embrace the language of victory in part because if we are victorious, then we are safe. We will never be that dying person we envision when we think about cancer. But in holding onto the image of victory, we block out any information that doesn’t fit that vision. We see a picture of a young mother with metastatic disease with a beautiful head of hair and can’t accept that her condition is terminal.

Pinktober only adds to the problem. Death doesn’t sell. But assuaging fear of death does. Pink covered happy messages sell partly because they make us think we have nothing to fear. They make cancer less scary. Battle cries makes us feel strong and courageous. We believe it won’t happen to us. We believe that if it does it won’t be life threatening. If we buy the pink products and get our mammograms on schedule we have nothing to worry about. Metastatic patients don’t fit that message so they are pushed aside and forgotten. They scare us so we avoid them.

I think everyone has stuck their head in the sand at some point in their lives. It’s human nature to filter our perceptions so we aren’t overwhelmed by negative input. But in putting on our pink blinders we have left our metastatic brothers and sisters by the side of the road, believing their reality does not apply to us when in reality 1 in 8 women will develop breast cancer over the course of their lifetime. 30% of those diagnosed with early stage disease will progress to metastatic. And 40,000 people are dying every year just in the United States.

If we are going to continue to use the language of war, we all need to shift our focus. We haven’t won the war. We aren’t even close. We have made progress. We have moved the battle lines at least in some places. And we have even won a few skirmishes. But our code of honor should demand that we leave no soldier behind. We must look our metastatic brothers and sisters in the eye and tell them we will not abandon them. Not now, not ever. We will not forget them. We will not pretend they don’t exist. And we will face the fact that any of us could easily join their ranks. They are a part of us. We can’t look away from fear or heartache. We must support each other. We must go forward together. We must carry those too weak to march in our arms while they are on this earth and in our hearts when they leave this world behind.

Fighting together doesn’t have to be all sadness and pain. We don’t have to focus solely on our losses and our battles not yet won. We can rally the troops with a shared battle cry of hope for a future that is cancer free. Remember M.A.S.H.? They weren’t just soldiers, they were beautifully imperfectly human. They not only fought side by side, but they laughed, loved, cried, had a few drinks, danced and even argued with one another. We can do that too. The key – we need to fight this war together. All of us. Yes, our hearts will break every time we lose someone from our ranks. And no, it won’t be easy.  But we will emerge victorious knowing we honored our promise and left no one behind.

You can find stories and photos of those living with metastatic breast cancer and those we have already lost at the links below:

Story Half Told features the stories of people living with metastatic breast cancer to help address the lack of understanding of metastatic breast cancer.

#iamsusan is a campaign initiated by Kelli Parker on Facebook and Twitter that highlights both the faces and stories of those living with metastatic breast cancer, and those we have lost to this horrible disease.

#numbershavenames is a social media campaign by Metavivor.  Follow them on Facebook to see their daily posts honoring the lives of those we have lost. Metavivor  uses 100% of donations for metastatic breast cancer research.

#metavivor #iamsusan #numbershavenames

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Who is N.E.D. and why does he have so many dance partners?

IMG_2534One thing that has struck me as I have gone through my journey with breast cancer is the language we use. I’m guessing part of it is because I am a linguist at heart. Our language colors our perception and can invoke strong emotions unexpectedly yet we often don’t give it much thought. This is the first in a series of posts about the language of breast cancer.

So who is NED? N.E.D. stands for “No Evidence of Disease”. Many of my cancer friends say things like “I’m dancing with N.E.D.” or “Hoping for a lifelong affair with N.E.D”  Dancing with N.E.D. is a cause for celebration. I saw a copy of my medical records last summer and my status is listed as bilateral synchronous stage 2b breast cancer, currently no evidence of disease. N.E.D. is what we all hope for but I think the terminology is often misunderstood.

I often get questions like “So you are cured right?” or “Are you in remission?” or “So glad your treatment is over!” I have a real hard time responding as I know what they are trying to ask but the language they are using is not something I hear from my doctors. There is a common misconception that when you have breast cancer you go through horrible treatment, but then you graduate, collect your pink ribbon and diploma and move on with your life just as it was before. I think this partly stems from all of the pink advertising that focuses on things like “5 year survival rate is 98%” which makes it appear that we have made giant strides and are just inches away from a cure. I’ve written elsewhere about the stats so I won’t expound on that here but while we have made progress, most people are very surprised to find out that metastatic breast cancer is incurable, 30% of those diagnosed with early stage disease go on to a metastatic diagnosis and we are still losing 40,000 people in the U.S. every year.

The other thing that I think is contributing is that there seems to be a slow but steady shift in how we think about cancer. The language is currently in flux so two patients with the exact same diagnosis and treatment may use different language because their doctors do. I’ve only had one medical professional use the words “cancer free”. It was right after my double mastectomy and I’m not even sure who it was. A male voice (maybe a nurse?) said “Congratulations! You are cancer free!” I’ve also never had a medical person use the word “remission” or “cure” regarding my current status. I’m the type of patient who does a ton of research and wants to be involved in any medical decisions so my doctors have been very open and honest with me. We all hope that my cancer never returns and because I had very slow growing tumors, statistically I have a good shot at dying from something else, hopefully a really long time from now. But we are all aware that each case is different and it could come back at any time. In fact my tumors were so slow growing that if a cell or two got loose somewhere in my body, I probably won’t find out about it for 10 years or more. I will most likely get the chance to see my kids grow up while a lot of young people diagnosed with breast cancer never get that chance.

In the past cancer was seen as a progression. So the belief was that if you caught it early, you would prevent it from progressing to a late stage. But as we learn more about cancerous cells it is becoming apparent that the blanket early detection/progression model doesn’t work. There are several different types of breast cancer that all progress differently. There are slow growing cells that may never become invasive, rapidly growing cells that seem to go metastatic no matter how early you catch them and everything in between. Susan Love wrote a great article I read at the beginning of my journey about the advances we were making in studying cancer cells and precancerous cells. One thing I learned was that really no one is cancer free. There are cells in all bodies that go rogue but we think that in most cases our immune system takes care of them. She also talked about the fact that in the future cancer may be defined by the type of cell rather than where the tumor occurs in the body. Some of the most promising treatments today are targeted to the biology of a particular type of cancer cell.

So back to N.E.D. – what does it really mean? It means that at the present time there is no evidence of cancer in your body. It doesn’t necessarily mean you are finished with treatment and it definitely doesn’t mean that there are no cancer cells present. In my case I have 4-9 more years on daily medication to suppress estrogen and starve any cells that might be loose in my body after treatment. Hopefully at that point I will need no more treatment and will dance with N.E.D. for the rest of my life. In the case of someone with metastatic breast cancer it means whatever treatment they are currently taking is working. With metastatic breast cancer treatment doesn’t end. The goal is to find a treatment that gives a patient N.E.D. status and hope that it continues to work for many years. When a treatment stops working, they move on to another until there are no more options. I can’t imagine how that must feel.

So yes, N.E.D. is a cause for celebration. When I hear a friend is dancing with N.E.D. I do a happy dance kind of like Snoopy. But I know that it doesn’t mean they are cured. It does not mean their journey is over. It doesn’t mean they no longer need my support. My wish is that all of us with breast cancer could dance with N.E.D. for life. And that N.E.D. can eventually retire his dancing shoes because we found a way to prevent cancer from occurring in the first place. Until then we need research.

Please join us in our efforts to retire N.E.D.’s dancing shoes permanently. N.E.D. is a great dance partner when you are drafted to the cancer ball, but I hope future generations never need him.  When you buy something pink or donate to a charity, make sure you know where your money is going.  I’ll be posting a page of cancer charities that I believe in on this blog soon. I’d welcome recommendations of both national and local charities you support. In the meantime if you want 100% of your donated funds to go to research for metastatic breast cancer consider Metavivor.

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I didn’t know…..

Dipping my toes in the water

Dipping my toes in the water

What I didn’t realize until I was diagnosed with breast cancer:

1. In the 1940’s women had a 1 in 20 chance of developing breast cancer over the course of their lifetime. In 1970 it had increased to 1 in 10. Today it is 1 in 8.  I assumed with all of the advances in treatment since my grandmother was diagnosed and had a radical mastectomy in the 1960s that my generation was at least doing as well as hers. I was mistaken.

2. The mean survival rate for women with metastatic breast cancer (stage IV – cancer which has spread to other areas of the body) is 3 years 3 months. With all of the pink products and literally billions of dollars raised in the last 30 years for breast cancer charities I assumed that we had made progress yet that number has barely budged. We’ve gained months, not years. I had no idea.

3. Women diagnosed with early stage breast cancer like me have a 30% chance of developing metastatic breast cancer and eventually dying of or with the disease. I assumed early detection saved lives, and in some cases it does but not nearly as often as we have been lead to believe. I was misled.

4. There is no cure for stage IV metastatic breast cancer. I knew that was a scary diagnosis to have but I guess I assumed they could do something to cure it for at least some people? After all the pink fundraising touting the goal of a cure? With a metastatic breast cancer diagnosis comes literally lifelong treatment designed to give you as much time as possible. I can’t imagine wrapping my brain around that diagnosis yet I know so many people who have had to and are living life to the fullest while they can. They deserve better. I was ignorant.

5. Only 7% of research dollars are devoted to metastatic disease. Metastatic breast cancer is the only type that kills. If you know someone who died from breast cancer, they had metastatic disease. I assumed with all of the slogans and banners that a lot of the money raised to “fight breast cancer” and “find a cure” was being devoted to saving lives. I was…. well, you know what they say about assumptions…..

We need a major shift in how we focus our resources. We need more transparency in all areas including where our donation dollars go, what we have and have not achieved in our search for a cure and who really benefits from pinktober. We need to take off our pink blinders and get to work because change will not happen unless we all work together. I want better for all of those already affected. I want better for my children. I want my daughter’s generation to look back and say “Wow, can you imagine what they went through?” because none of them have ever had breast cancer. I will be posting information, links, pictures – basically anything I find educational, helpful or occasionally even just funny to lighten the mood throughout October. I hope you will join me in this journey. When we know better, we do better. Let’s learn together.

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