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.

 

Don’t Put Your Money Where Your Boob Is

Groan.

Grumble, grumble.

Cringe.

Stomp foot.

It’s that time of year again.  October.  Pinktober.  The time of year that America and the world is supposed to “celebrate” breast cancer, bring awareness to the disease and get every woman to touch their boobs.  And, while we’re at it, buy a few pink things to support the cause.

But do me a favor.  Do not buy a pink toaster, kitchen aid, pen, purse, drink, lipstick, donut or bagel for me.  Do not buy a pink bra, t-shirt, socks, boa or scarf to show your support.  Please, do not buy a pink car, bucket of fried chicken, gun (yes, there are pink guns people!!!!), perfume, football, stiletto or nail polish because you think it’s helping.  In the grand scheme of things, it’s probably not.

I know you are buying these things because you are a good person and you are trying to help and why not get something cute you can show off while you’re at it?  I get it.  I do!  You’re heart is in the right place.  But when you buy these things, you need to ask, “where is this money really going and how much of it is spent on research?”  Breast Cancer Action has four questions you should be asking and they are good ones.  So if you really want that pink thing you found at your local shop, take a look at these questions to ask first.

• Does any money from this program go to breast cancer products?  How much?
• What organization will get the money?  What will they do with the funds?  How do these programs turn the tide of the breast cancer epidemic?
• Is there a “cap” on the amount of money you will donate?  Has this amount already been met?
• Does this purchase put you or someone you know at risk to toxins linked to breast cancer?

If after asking all of these questions you still want to buy something “pink” because of how it makes you feel, go for it.  At least you’ve done your research.  But I urge you to also donate directly to organizations that are working to cure metastatic breast cancer or that are providing essential services to those who are going through treatment or have finished active treatment.  Which ones, you ask?  Well, there are a lot and my goal is to feature as many of them as possible in the month of October.

In this post, I’d like to feature organizations that I have personally used that I am eternally grateful for.  They are not researchers.  They are not going to cure the disease.  But they make living with breast cancer a little more tolerable.  I hope that you can give any amount to their cause because they have helped so many women like myself.  What they do is nothing short of extraordinary.

5 Under 40 Foundation

Mission: To provide medical, wellness and beauty services to women under the age of 40 who have been diagnosed with breast cancer or have tested positive for a BRCA gene mutation. We focus on a woman’s whole being in order to empower, foster hope and improve the quality of life for women in the face of this disease.

The organization was started by Jennifer Finkelstein, who was diagnosed with breast cancer at age 32, 2 months before her wedding day.  The organization focuses on working with women who were diagnosed with breast cancer before the age of 40 or have test positive for the BRCA gene mutation.  The money they receive goes toward services like medical (mammograms, lymphedema support, nipple tattoos, medical massage therapy), wellness (personal training, yoga, nutrition) and beauty (quality wigs, makeup, scarves).  The organization also holds support groups with leaders in the field such as nutritionists, oncologists, makeup artists, lymphedema specialists and more.

5 Under 40 helped to fund my very expensive lymphedema therapy and I have been to countless support group sessions.  I find the services they provide invaluable and have seen first hand the impact they have had on dozens of young women.  Please donate!!!!

 

Hair We Share

Mission:  “To help maintain the dignity, confidence and self-esteem of those affected by medical hair loss.”

Hair We Share makes custom wigs for men, women and children who suffer from medical hair loss.  This can be from cancer treatment, for alopecia or due to a trauma.  The organization relies solely on hair  and monetary donations.

Hair we Share generously donated a wig for me and I was ever so grateful.  Please consider making a donation in any dollar amount that you can afford.  Or, if you are considering donating your hair, this would be a great organization to consider.

 

Hidden Warriors

Hidden Warriors mission has many levels and goals that I invite you to read here but it’s main goal is to use costume and makeup role play as a way to empower women who have undergone cancer treatment.  Women dress up as “warriors” with over the top head pieces, costumes, fantasy makeup and then do a photo shoot while holding a power pose and listening to music that the warrior finds empowering.

I participated in their workshop last winter and it was one of the most fun experiences I’ve had in a long time.  What they do is truly unique and the director is passionate about empowering women to find the warriors within themselves as a way to help fight the disease and live a more positive lifestyle after treatment (or during treatment).

They are trying to do as many of these workshops as possible but need donations to make it happen.  If you would like to donate, your money would be going to a worthwhile cause.

What organizations have helped you through the cancer process?  Please comment below.

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.

International Women’s Day: A Focus On Breast Cancer In Low-Income Countries

Photo from who.int. A nurse does a breast examination at a clinic in Ikorodu, Lagos

Today is International Women’s Day, a day where we remind ourselves and the world that every woman, no matter where she lives, no matter her circumstances, race, economic status or religion, deserves equal rights.  Today I want to focus on how every woman deserves top notch care when it comes to the diagnosis of and treatment of breast cancer.

Breast cancer is most frequently diagnosed in developing countries but this could be due to a few factors.  First, screening and education are more readily available in a developed country.  Second, in developed countries, women are more likely to have children at a later age and environmental factors such as nutrition contribute as well.  While developed countries like the U.S, Canada, and European countries have higher rates of diagnosis, many underdeveloped and low-income countries have high mortality rates, probably due to lack of early detection and access to medical care.  Facts taken from Cancer’s Global Footprint which has an interesting interactive map. 

One of the problems is that there is very little funding for cancer in low-income countries.  Take a look at this chart by PRI.org (Public Radio International).  In developing countries, more than 4.8 million people die from cancer but only $168 million goes toward funding and research.  There have been 1.1 million deaths due to TB yet they receive $903 million in funding.

Chart credited to pri.org

I’m not saying that it’s bad that so much funding has gone toward, HIV/AIDS, TB and malaria.  It’s because of that funding that mortality is dropping and that is a great thing.  But isn’t it time that cancer in low-income nations receive the same funding and consideration?  That women have the same access to care and education as I have the privilege of obtaining?

Listen to this woman’s story.  She is from Haiti and didn’t get a breast cancer diagnosis until the lump grew so large that it broke through her skin.  According to this article and interview, many women in parts of this country don’t even know about breast cancer and that it is treatable with early detection.  They also speak to doctors who are working in clinics in Haiti and are working hard, in collaboration with institutions in America, to bring care to women afflicted with breast cancer and other cancers.  It is a fascinating listen but also puts a harsh spotlight on the lack of resources for cancer and breast cancer in developing countries and the tough fight that doctor’s and educators are facing.

So today, on International Women’s Day, let’s not forget about all of those women who are living with and dying from breast cancer and don’t have the resources to gain education or treat it.  Every woman deserves the opportunity to fight this disease.  Let’s educate ourselves on the plight of women all over the world who have or will have breast cancer.

You can also make a donation to Partners In Health, who is mentioned in the story above and working with women to treat breast cancer in developing countries.

Here’s another interesting article found on the World Health Organization’s site.

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

Shout Out For Fertility After Breast Cancer

As many of you know, I am in the process of harvesting and freezing my eggs.  Things are moving very slowly but hopefully they will harvest sometime between Sunday and Tuesday and then this aspect of my life will be over and done with (no more injections!!!!!).  (By the way, every time I say “harvest my eggs” I feel like a chicken)

I was surprised today to receive an email from my fertility doctor asking if I would help raise awareness about fertility issues for women with breast cancer for breast cancer awareness in October.  I’m honored that she thought of me to help advocate for fertility preservation for women of childbearing age who are dealing with a breast cancer diagnosis.  I’m not sure if this is what she is looking for but this is what I wrote for her.  Tell me what you think.  And please be honest.  Should I add anything?

When I heard on August 1, 2014 that I had stage 2 breast cancer, I thought that it was one of the scariest, worst things I would ever hear. It was absolutely terrifying. Amongst the overwhelming news about diagnosis I found out that my treatment, two rounds of chemotherapy, possible radiation and ten years of tamoxifen would leave me unable to have children. This was probably the most gut-wrenching of all the news.

My husband and I are very lucky. We have a beautiful baby boy. We conceived easily when I was 35 after only three months of trying so fertility issues were never a concern for me. I was informed by my oncologist that because my treatment will leave me infertile, the only chance I have of having a child of my own is freezing my eggs. Not only did I have to deal with the idea of having cancer and all of the treatment that goes with it, my husband and I had to decide would we (maybe?) want more children in the future, and we had about 2 weeks to decide before my cycle started and 5-6 before chemotherapy began.

As I researched what goes into harvesting and freezing eggs, I was astonished by the cost associated with doctor’s visits, medications and the procedure of harvesting. Prices ranged from $7500 to $10,000. A staggering number when you are also facing the costs of cancer.

Thankfully, through a program offered by The Livestrong Foundation, women of child bearing age who are faced with breast cancer (or any cancer) have an opportunity to freeze their eggs through collaborations with fertility clinics. Some offer discounts while other’s provide the service at no cost. As a result of the collaboration between Livestrong and the Sher Institute, I now have the chance to expand my family if and when I feel it is right. And that is all I want right now; a chance and a choice. It is and should be our right as women regardless of a breast cancer diagnosis to start or grow a family.

I want to thank the Livestrong Foundation for the kind and informative services they have provided and everyone at the Sher Institute for their care, compassion, understanding and advocacy for women living with breast cancer.