Almost Escaped Pinkotober…Almost

This year I decided that I would not even think about Pinktober.  I have written about it for the three past years and I don’t feel like I have any new thoughts on the subject.  Of course, I saw Pinktober stuff; lotions, bagels, moving trucks, t-shirts at breast cancer awareness days at schools…but mostly I escaped without having to deal with it at all…until last weekend.

Ken, Oliver and I went apple picking in New Jersey as we do each year (usually we go with friends but Oliver got strep throat on the planned date, so we went on our own).  It was a hot October day but we had a great time and got lots and lots of apples.  Then we went to a restaurant that we often go to in the area because they have a good kids menu, lot of adult selection and the quality is good (we’re food snobs).

I ordered something unusually fatty, a fried chicken sandwich with prosciutto and mozzarella and fries (I never order like this) and Ken got a burger.  When it arrived at the table, I didn’t notice anything alarming.  I was so hungry that I just pulled the pick out of one half of my sandwich.  But then Ken said to me, “Carrie, do you see what’s in the sandwich.”  I was like, “huh?”  And then I saw it.  My jaw dropped.

Two picks on each half that said, “Save the ta-tas.”  One for each boob!  I couldn’t believe it.  Why would they put this in my sandwich?  Why?  If you really want to do breast cancer awareness at your restaurant, fine.  I really don’t have a major problem with it.  If you want to raise money along with that awareness, I’ll cheer you on.  But that’s not what this was.  This was two sticks that made a joke of my disease.  I was livid.

I decided not to say anything while I was there, mostly because I didn’t want to make a scene or make the server uncomfortable, which he didn’t deserve.  So, I ate half my sandwich and we left.

The more I thought about it, the more upset I got.  The more I felt like these picks were inappropriate, especially coming stuck into my meal.  So I wrote a letter on their Facebook page.

These little sticks came with my meal today. I am a young adult breast cancer survivor. I want to say that I think that when you bought these, you were thinking that they equated to support. Support is wonderful. But this is not what support for breast cancer looks like. This is sexualizing our disease and it’s offensive, inappropriate and ill informed. And to stick this message in my sandwich is just in bad, bad taste.

If you really want to support women with breast cancer, I can point you toward organizations that work exclusively on research for stage 4 metastatic breast cancer. Stage 4 is the only kind of breast cancer that is terminal. It can be managed but a man or woman with stage 4 breast cancer will be in treatment until treatment no longer works. I can also point you toward wonderful organizations that work to help men and women undergoing treatment to make life a little less sucky. You could donate a portion of your sales to these organizations. You can ask for donations on top of tips. But, no matter what you do, these sticks will not save any breasts. That’s not how breast cancer works.

Also, why “save the ta tas?” Why not save lives?

Breast cancer is not cute, funny or sexy and nothing you do can make it that way. In fact, 1 in 8 women will be diagnosed with breast cancer in their lifetime. 114 men and women die from metastatic breast cancer every day. And even when we get mastectomies, chemotherapy and radiation, the cancer can still come back and kill us by moving to the bones, brain, liver and lungs. Early detection does not save breasts. It can catch the disease early but that’s not a guarantee. So, “save the ta tas” really doesn’t make any sense.

Please consider how sticking these stupid little signs in a sandwich can be offensive and traumatizing. Even if that’s not what you meant to do.

They ended up responding and apologizing for offending me.  The chef is a 5 time cancer survivor and his intension really was to show support.  He hadn’t considered the fact that these might be traumatizing to some.  They agreed to take the picks off and not serve them again.

Originally, Ken didn’t think I should say anything about these picks but I felt like I had to. Because if I didn’t, will they have learned anything?  Would they ever have understood who ill informed they are?  What they did was the antithesis of awareness.  Awareness should be about knowledge.  Real knowledge.  Not cutesy little slogans

I didn’t escape Pinktober unscathed as I had hoped.  But maybe I helped by saving another woman from being re-traumatized.  Maybe, someone who read the post will think about donating money.  Maybe the chef or other workers will become advocates in the future and speak up about other injustices.   I don’t know.  Maybe I’m being idealistic.  But that’s who I am.

Have you spoken up when confronted with a Pinktober slogan or item for sale that made you red in the face?

How do you handle the onslaught of pink and cutesy advertisements during this month?

On the bright side, here  are some pictures from our apple picking adventure.

 

Too Soon

Picture taken in Prospect Park, one year ago.

In Prospect Park near where I live here in Brooklyn, there is an amazing tree.  In the summer, it looks like any other tree.  You could pass it and never give it a second thought.  It is in the fall that you see it’s true potential; it glows with orange and yellow.  The colors are like a fireball and the sight literally stops people in their tracks.  Year after year, this tree fails to disappoint and my husband and I make an annual pilgrimage to bask in it’s beauty.

Last weekend, we had a pretty rough storm here in New York.  Rain fell all day long and the wind gusts were strong and relentless.  The next day I went for my run in the park.  As I turned the corner I took out my phone to take a photo of my favorite tree.  But what I saw was not the full glow of neon leaves but rather threadbare branches, patchy and flimsy.  The storm had taken the leaves before they were ready to fall.  I didn’t take a photograph.  I couldn’t.

Immediately, the tree made me think of all the women who have endured the storm of cancer and who, like the tree, have been taken from us before their full bloom and glory have been shared with the world.  It reminded me that nothing is certain.  Nothing is permanent.  That all life is fragile.

Breast cancer awareness month ends in just a few short days.  We have been subjected to the usual onslaught of media coverage, walks for the cure, cheerleaders with pink sparkle bows in their hair, products being sold with false promises of major donations, signs making a joke out of our disease and pink t-shirts galore.  But that’s not what this month is about.  This month is about remembering all of the women who have been taken from us too soon; whose potential will never be fully realized, dreams never completely fulfilled.  Just like my beautiful tree.

I Have Always Been Aware

Me on the left, next to my grandmother, my brother, Jesse on the right and my cousin in the front.

I honestly can’t remember a time that I didn’t know about breast cancer.  Along with the Holocaust stories my grandmother would share with me, crying in anger for what she had experienced, she would also cry about losing her breast to cancer.  She often complained about the pain she was in and how uncomfortable her prosthetics were.  I remember seeing her body, one breast completely mangled, missing, concave.

Breast cancer is something that’s inherited in my family.  Some families get long legs, blue eyes, dimples.  We get breast cancer.

I always knew that breast cancer was going to happen to me but I planned out the way it was going to happen.  I’d be in my 60s.  I would have been getting yearly mammograms for 20 years at that point so, when we caught it, it would be very early stage.  Treatment would be minimal.  I would be praised by doctors for being so diligent about my care.  They’d wish that there were more patients like me.

I never expected to avoid the cancer.  I just never imagined, in a million years, that it would happen to me in my 30s and that it’s effects would be so life altering.

This is one reason why breast cancer awareness month is so hard for me.  Because I was so aware of the fact that it would happen to me and even though I was more aware than most thirty something year olds, it didn’t make a difference.  I still needed to lose my breast.  I still needed chemotherapy, radiation, hormone therapy.

I think we should completely do away with Breast Cancer Awareness Month and replace it with Breast Cancer Advocacy Month.  It should be a month where doctors and nurses go into underserved communities to provide free care to all women.  It should be a month where congress hears the pleas and needs of my metastatic sisters.  It should be a time when the whole breast cancer community comes together; patients, doctors, researchers, etc…to discuss what we need to move forward.  It should be a time when awareness looks like real statistics and information for men and women rather than cutesy slogans, pink products and images that sexualize and demean our disease.

Awareness only gets you so far.  It helps us to be curious and, hopefully, diligent about our bodies and care.  But that’s it.  And that’s not enough.  I am proof that it’s not enough.

 

The Grass Is Always Greener

I had another pouty session for myself recently.  I got the results of my blood test back from my oncologist and, for right now, they are reading as post-menopausal.  When your cancer is ER+, this is the news you want to hear.  You want your body to be making as little estrogen as possible.  I have be purposefully and likely permanently put into menopause.  While I suppose this is good news, I’m really very depressed by it.  I never minded getting my period that much.  It’s not like I liked it or anything (I had terrible cramps and crazy mood swings) but getting it every month let me know that my body was still working and healthy.  It was something I could count on.  I knew exactly when it was coming (often down to the hour) and it made me feel like a woman.

I haven’t gotten my period in nearly two years.  Sometimes I mention this and a woman’s first response is “Oh, that’s so awesome!!!!”  I can see why one would say that.  But the loss of my period is directly linked to my loss of femininity.  Not only is that thing that made me a woman, that I could count on every month, gone, but so is my ability to have more children.  And that just fucking sucks.

Sometimes I forget that, in reality, I’m really very lucky.  Yes, cancer was shit and it’s the gift that keeps on giving but, I’m here and, at least for now, I’m not going anywhere.  While I complain about being forced into menopause, I know that there are many women who wish they could be on medications like Tamoxifen or Zoladex (which I’m off of right now) to keep cancer at bay.  Women who are triple negative or diagnosed stage IV.  But sometimes I think about the women who are not ER+, (who would give their right leg to be on this medication) and think, well, at least they have a shot of having a baby (if chemo didn’t force them into menopause).  It’s stupid.  It’s insensitive.  But it’s how I think sometimes.

Sometimes the grass seems greener on the other side.

 

But knowing that in many ways I have it good, I don’t want to forget that this can change tomorrow.  My luck could run out and I might wish for the days of hot flashes and infertility being my biggest worry.  I know that at any time I could become one of the 30%.

So, to continue with this October breast cancer month thing that we’re in, I want to highlight a couple of organizations that are working on a cure for the only breast cancer that kills, stage IV.  While all breast cancer sucks and the treatments for it have the most awful effects, there is no cure for stage IV, only treatment and management.  This needs to change.  Like, yesterday!!!!!!  These organizations are fighting the good fight and are dedicated completely to finding a cure.  There are no fancy advertisements.  No pink boas or ribbons.  Just research, research, research.  If you have some money that you have been aching to donate, I urge you to consider donating to METavivor and Metup.

Here’s METavivor’s mission.

METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer. At the time of METAvivor’s founding, no organization was dedicated to funding research for the disease and no patient groups were speaking out about the dearth of stage 4 cancer research.  While more and more people have taken up the cry for more stage 4 research, METAvivor remains the sole US organization dedicated to awarding annual stage 4 breast cancer research.

Here’s Metup’s Mission

MET UP is committed to changing the landscape of metastatic cancer through direct action. We protest and demonstrate; we meet with government and health officials and researchers; we support research into metastatic disease; and we speak out against the sexualizing of breast cancer. We are convinced that the deaths of women and men from metastatic breast cancer are a paramount issue, and we pledge ourselves to oppose all who deny the reality of the 522,000 people who will die from metastatic breast cancer globally every year while waiting for a cure to be found.

 

What Do I Really Think of Pink?

This was a sign I saw at a Panera I went to. It’s a breast cancer bagel! Because nothing says “cure” like processed flour and sugar!

I think the time has come for me to really weigh in on the subject of Pinktober.  What is Pinktober exactly?  It’s a time during Breast Cancer Awareness Month when the world turns pink, supposedly in support of breast cancer awareness and research.  You can go into stores and get everything from pink t-shirts, bags and lotions to cars and buckets of fried chicken.  The idea is that when you purchase these items, not only are you helping to spread awareness about the disease, your money is going to help the cause.  At least, this is what everyone thinks.

Sometimes it is the case.  There are products from companies where they are dedicated to the cause and contributing large sums of money to worthy breast cancer organizations and researchers.  But oftentimes, it is simply a way for companies to profit off an idea that has become fashionable, rather than a life altering disease that affects 1 in 8 women and kills more than 40,000 each year in the United States alone.

But how did this all happen?  How did breast cancer become synonymous with pink products, pink ribbons and pink parties?  According to thinkbeforeyoupink.org, it began with the yellow ribbon that was tied to a tree by the wife of a man being held hostage in Iran in 1979.  She tied the ribbon was to help bring awareness and to signify her hopes of seeing her husband again.  So successful was this act that 11 years later the AIDS movement adopted the same strategy, using red ribbons to spread awareness of the disease and garner support for research and programming.

So successful were these campaigns, suddenly everyone was on the “ribbon” bandwagon.  Susan G. Komen was first on the scene to bring the ribbon to breast cancer awareness, handing it out to every participant in their race for the cure in 1991.  In 1992, seeing the popularity (and possibly dollar signs), Estee Lauder in collaboration with Self magazine worked to spread the word about BCAM and put the pink ribbon symbol in every Estee Lauder counter in the country.

At the same time, a woman named Charlotte Haley, the granddaughter, mother and sister of women who had breast cancer, was already distributing peach ribbons to cards that said, “The National Cancer Institute annual budget is $1.8 billion, only 5 percent goes for cancer prevention.Help us wake up our legislators and America by wearing this ribbon.”

Self magazine and Estee Lauder approached Haley to collaborate which Haley declined because they were too corporate and not grassroots enough.  But did that stop them?  Of course not!!!  This ribbon thing was gold so they contacted their lawyers who said, “just don’t choose peach” and the pink ribbon was born.  Estee Lauder and many other organizations began using the symbol on and to sell their products.  This is now why, in October, everything is pink.

For some, this show of pink is uplifting and empowering while for others it trivializes the experience of having cancer.  What do I think?  I think if wrapping yourself in a pink feather boa as you march down the streets in your pink lipstick, pink t-shirt and pink sneakers on brings you joy and makes you feel good, do it!!!  Hell, whatever makes you smile, laugh and give cancer the great, big, pink middle finger, go for it!  But I do think that there is a way to buy pink responsibly.  When buying an item that claims to donate proceeds to a breast cancer organization, make sure you know which organization that is and just how much is being donated?  Do you support the organization that the product is donating toward?  Do the fund research and programs for those who are going through cancer treatment?  Would you donate your own money to that organization?  Why or why on?

For me, all of this pink is meaningless.  It’s a color and nothing more.  Seeing people wearing it doesn’t make me feel more supported.  I wish, that instead of buying a lipstick where a fraction of the asking price was donated, that people actually donated to a breast cancer organization that they support, hopefully to one that spends its funds on research.  Because, let’s face it, that pink lipstick is pointless if you don’t have that loved one to kiss anymore.

What I wish most of all is that companies would quit turning breast cancer into a party or something kitschy and cute.  I haven’t felt much like celebrating this year and I certainly haven’t felt cute.  I wish they would stop over sexualizing the disease because, speaking from experience, I have never felt less sexy in my life.  There’s nothing like having a breast amputated and to have estrogen medically eradicated from your body to get the sex drive knocked out of you.

If we are going to raise awareness, let’s just deal with the cold, hard facts.  They are ugly, depressing and scary but they are real and honest.  No more dogs in bras.  No more freeing the ta-tas.  Please….PLEASE put your bra back on!  If I could wear a real one, I would!  So there’s no reason to take yours off.  It doesn’t change my experience or circumstances.  Let’s instead focus our attention to how we can finally ensure that stage IV metastatic breast cancer is no longer a death sentence.  Let’s find out why breast cancer spreads beyond the breast and into our vital organs, bones and brains and stop it it’s tracks.  Because that is what finding a cure really means.  A cure means we don’t let one more woman die of this disease!

How do you feel about Pinktober?  Does it empower you?  Make you smile?  Or does it anger you?  I’d love to hear your thoughts.

*The opinions above are my own.  I respect all positions on this subject and don’t mean to demonize any side.  I only mean to demonize cancer and the corporations/companies who profit from and exploit our experiences.

Mommy Monday: Faces of Breast Cancer

It’s breast cancer awareness month.  I have so many feelings surrounding this month.  I am working on finding a way to put it into words that are unique.  Or not.  So many of you have written so eloquently about your thoughts and I share those thoughts.

Many of you will remember that last month (or was it two months ago?), the Komen foundation posted an advertisement on national dog day of dogs in bras with balloons for breasts.  This was their way of spreading awareness.  Some people found this to be cute and funny.  Others, like myself, found it trite and offensive.

Some people feel like we have done enough awareness.  We are as aware as we can be and we should spend all of the funding on research.  I will agree and disagree with this.  I think WAY MORE money needs to go toward breast cancer research but I also think awareness is important.  We have all seen the statistics.  Those are fine.  But I think the best awareness comes from story and seeing the faces affected by breast cancer (or any cancer, for that matter).

When I think of how breast cancer has affected me, I think of the toll it has taken on me as a mother and the time it took away from raising my son.  While I am early stage, I remember every day that this can be temporary and that recurrence is possible at any moment.  I’m constantly in fear of leaving my son without a mother.  The thought is unbearable to me.  It is always on my mind.  If I were to share anything about my experience with others is would be that breast cancer is not an older woman’s disease.  It can happen to young women as well.  That is why it is important for women to know their bodies and do self examinations.  If I didn’t do this and my cancer was caught later, I think my prognosis would be much different.

If you are willing and able, I’d love to collect and share pictures and stories of women and men affected by breast cancer during this month.  As an actor, arts educator and facilitator, I believe in the power of story to unite a community.  So let’s share who we are and how breast cancer has affect us and our loved ones.  To me, this is the best awareness we can give.

And So, Breast Cancer Awareness Month Ends

This has been an interesting and eventful month for me in my life with breast cancer.  I have started my chemotherapy regimen and I have lost my hair.  In between all of this, women have been marching, walking, running to raise awareness of breast cancer or to shine as survivors.  Stores have been featuring the color pink in everything; bras, bags, hair accessories, lipsticks…you name it.  News shows have been following news anchors to their first mammograms and putting it on television.  It has been everywhere.

But here is my question.  When does awareness become exploitation?  There has been controversy over breast cancer awareness in the NFL, when there seems to be a problem with how players are treating the women in their lives.  They are being forced to wear pink sneakers, pink gloves, sell pink things at the NFL stores…how much of this raises awareness and how much money goes toward research?  Are they just trying to make a buck?  Get more fans and viewers?  What is the real incentive here?

What about the day when women were encouraged to spend the day without a bra?  Set the tatas free!  How exactly does this raise awareness about breast cancer.  I’m sure intensions are good for some, but I still don’t get the connection.  As a woman with only one tata (or a ta) it’s not about setting them free from the bondage of my bra.  It’s about knowing what constitutes a healthy breast and knowing what that feels like.  Going braless with nipples pointing doesn’t seem to get the message across that you need to know your body.  It’s just showing off, in my opinion.

Some people have asked me if I have done the walks, watched the shows on tv, watched the documentaries, bought pink. No, no, no, no and no.  Maybe it’s because I’m in the thick of it.  I don’t have the time or the emotional capacity to deal with it all.  But it all seems kind of yucky to me.  Like somehow, we’ve forgotten what is important.  Breast cancer awareness month has become like the Christmas of the cancer world.  Things to buy, events to go to, shows to watch.  For me, it’s lost it’s authenticity.

So, as a community, what do we do?  What do we want to see?  If we could recreate breast cancer awareness month, what would we want it to look like?

What I would like to see is that all clinics and insurance companies drop their requirements for referrals and make the process of obtaining a mammogram easy for women.  You can make appointments over the phone or online.  Women can donate funds for women in need to help pay for mammograms, ensuring that it is not a financial strain.  Women write about their success and challenges in dealing with breast cancer and it is shared in offices all over the globe, so that no matter what you are going through, you know you are not alone.

I don’t need someone to wear pink in front of me to know I’m supported.  I don’t care about the pink ribbon.  I care that you are all taking control of your body and being proactive.  That is how we kick cancer in the ass.

So, to end breast cancer awareness month, I make the same plea to you that I did at the beginning of the month.  Touch yourself.  Give yourself a self examination.  I have info on this blog on how to do it or you can research it yourself.  Schedule your first mammogram.  If you are scared, go with a friend.  But just do it.  I hope that next year at this time I can announce that I’m cancer free.  I hope that I hear from a bunch of you that through this blog you got the courage to get yourself checked.  And despite the results, that you feel empowered that you have taken control of your life.  Please make a pledge here to do this today.

As always, feel free to contact me with any questions.  I am one of your resources.

photo courtesy of healthline.com

When I Think About You I Touch Myself

It’s Breast Cancer Awareness Month, people!  In past years, it’s something I’d give nominal notice to but this year it means everything to me in terms of advocacy.  Did you know that 1 in 8 women will be diagnosed with breast cancer?  250,000 new cases each year?  That’s not just epidemic, it’s bullshit!!!!!!!  I don’t know why this is happening or how to prevent it but I do know that with education it can be caught early.

That is why I’m challenging each and every one of you ladies to touch yourself this month.  That is the first step you can take.  And if you remember, that is how I found my cancer.  That’s right.  I FOUND MY CANCER!!!!!!!   By daring to touch myself and know my body, I have (hopefully) saved my life.  I’m going to have to go through hell and back to do it but I choose life!!!! I choose to kiss my baby until he finds it completely embarrassing and beyond!  I choose to see the world!  I choose to try new foods!  I choose to educate new generations!  I choose to give cancer the middle finger and get it the fuck out of my body!!!!!!!!

If you have never done a self examination or it’s been a long time (it’s like riding a bike or sex, don’t worry, you’ll get the hang of it again!) here’s how to do it according to breastcancer.org

step 1

Step 1:  

Begin by looking at your breasts in the mirror with your shoulders straight and your arms on your hips.

Here’s what you should look for:

• Breasts that are their usual size, shape, and color.
• Breasts that are evenly shaped without visible distortion or swelling.

If you see any of the following changes, bring them to your doctor’s attention:

• dimpling, puckering, or bulging of the skin.
• a nipple that has changed position or an inverted nipple (pushed inward instead of sticking out).
• redness, soreness, rash, or swelling.

Step 2

Step 2: Raise your arms and look for the same changes.

Step 3 and 4

Step 3 and 4:  

Feel your breasts while lying down, using your right hand to feel your left breast and then your left hand to feel your right breast. Use a firm, smooth touch with the first few fingers of your hand, keeping the fingers flat and together.

Cover the entire breast from top to bottom, side to side—from your collarbone to the top of your abdomen, and from your armpit to your cleavage.

Next, feel your breasts while lying down, using your right hand to feel your left breast and then your left hand to feel your right breast. Use a firm, smooth touch with the first few finger pads of your hand, keeping the fingers flat and together. Use a circular motion, about the size of a quarter.

Cover the entire breast from top to bottom, side to side — from your collarbone to the top of your abdomen, and from your armpit to your cleavage.

Follow a pattern to be sure that you cover the whole breast. You can begin at the nipple, moving in larger and larger circles until you reach the outer edge of the breast. You can also move your fingers up and down vertically, in rows, as if you were mowing a lawn. This up-and-down approach seems to work best for most women. Be sure to feel all the tissue from the front to the back of your breasts: for the skin and tissue just beneath, use light pressure; use medium pressure for tissue in the middle of your breasts; use firm pressure for the deep tissue in the back. When you’ve reached the deep tissue, you should be able to feel down to your ribcage.

Step 5

Step 5:  Finally, feel your breasts while you are standing or sitting. Many women find that the easiest way to feel their breasts is when their skin is wet and slippery, so they like to do this step in the shower. Cover your entire breast, using the same hand movements described in Step 4.

Now, I’m not going to lie.  I didn’t go through all of this.  Sometimes I’d just check in the shower or while in bed.  When I found my lump, I was literally just playing around with the feel of my breasts post breastfeeding.  It wasn’t even an official self examination at that point really.  But as long as your feeling and checking and have some idea of what your breasts feel like normally, the more likely you are to catch something that feels off.  And remember, most times it’s nothing.  I’m just one of the unlucky ones.

Do you remember the song from 1990 I Touch Myself by The Divinyls?  Remember how shocking it was to hear that on the radio?  Well, the lead singer, Chrissy Amphlett was diagnosed with breast cancer and sadly died from the disease in 2013. But before she died, she repurposed her song into an anthem for women to begin touching themselves and learning about their body for the hope of early detection.  It’s so powerful!  I promise, you won’t be able to hold back the tears and goosebumps.  You can watch the youtube video here and read the article about it here.  Share it on your facebook and twitter pages.  Oh, and don’t forget to share my blog, too!  Thanks!!!

TOUCH YOUR TITTIES TODAY!!!!!