A Reaction To The American Cancer Society’s New Mammogram Guidelines, Written By One Of “Those Women”

Progress

– A movement toward a goal or further to a higher stage.

–developmental activity in science, technology, etc., especially withreference to the commercial                 opportunities created thereby or to thepromotion of the material well-being of the public through the goods,techniques, or facilities created.

–growth or development; continuous improvement

In science, in cancer, we are always looking for the next best thing.  The next best medicine, procedure or test as a way to prevent deaths from a  disease or even to prevent the disease from occurring.  That’s why we have clinical trials, to test out the latest and greatest theories and see how they work.  Some of them fail, and we learn from those failures but some of them succeed.  Like Tamoxifen, Herceptin.  These are both example of incredible progress when it comes to the treatment of certain types of breast cancer.

But sometimes, what one calls progress isn’t universally so.  What I’m referring to is the American Cancer Society’s new mammogram guidelines.  The changes are as follows.  Women should start getting routine yearly breast exams starting at 45 years old.  The old recommendation was 40.  They also say that women can skip manual breast exams altogether.  After age 55, women can switch to a mammogram every two years if their scans have previously and consistently been clear.

The American Cancer Society sites a few reasons for this change.  One reason is that a young woman’s breast is more dense than that of an older woman, making the detection of breast cancer much more difficult.  Dense breast tissue shows up white and so do tumors.  This creates more false positives in young women.  In an article for CNN, one doctor said, “If she starts screening at age 40, she increases the risk that she’ll need a breast cancer biopsy that turns out with the doctor saying ‘You don’t have cancer, so sorry we put you through all this,'” Brawley said.

Many women feel like this is a risk they are willing to take.  What’s a few biopsies when, in the end you either a) have peace of mind or b) have been diagnosed with breast cancer but, hopefully it has been caught in time to receive life saving treatment.  Acknowledging this, the ACS says that concerned women should get mammograms if they want to.  They’re not saying, “don’t do it,” but they are saying that women can reasonably wait five more years.

But what about all of those women who might develop breast cancer between the ages of 40-45?  Or younger?  What if, because they were not screened due to the new guidelines, their cancer is not caught in time for life saving measures but only life extending ones?  This is the concern that many women have.

The other reason that the ACS is making this recommendation is the hysteria caused by breast cancer screening.  Dr. Brawley, in the same interview said, “False positives are a huge deal.  These women are so frightened and inconvenienced they swear off mammography for the rest of their lives.”

These women.  THESE WOMEN?????!!!!!!!

This is where I have my biggest problem.  This statement, in my opinion, further perpetuates the notion that women are not in control when it comes to their emotions, especially fear and anxiety.  That we are fragile and not strong enough to handle the scary process that is required for our basic health.  We are delicate flowers who can’t take the heat.  Are women so frightened by cervical cancer that we refuse pap smears?  I’m sure it happens but it’s not common.  Just like I’m sure some women are traumatized by a false positive that could occur with a mammogram so they never go back again.

But I like to think that most women, despite all of this, put their health first.  I think that is what is true.  I think that is the majority.  Although I don’t have any statistics to back this statement up.  It’s just my feeling about my fellow women.

Let me tell you what is truly frightening about all of this.  My fear is that without regular manual breast exams and mammograms, more women without a personal family history or genetic mutation will not get their cancer detected until it is too late.  I’m scared that in the next few years we will see an increase in breast cancer mortality, especially in young women.

So here’s my real problem.  As of today, there is no effective tool for detecting breast cancer in young women, other than self breast exams.  I’ll say this again, THERE IS NO TRULY EFFECTIVE TOOL for detecting breast cancer in young women.  And the one way that we have, manual breast exams (which is how I found mine, by the way) they want to do away with!  So, why instead of decreasing ways women can get screened is there not a focus on rigorous and early detection in women under the age of 40?  I’m not saying this is easy.  I’m saying it’s necessary.

Being a woman in America just got a little scarier.  But don’t tell the American Cancer Society.  They just might set new guidelines so as not to paralyze us with fear.

Young Survival Coalition’s response to ACS’s new guidelines.

CNN article with video

New York Times article

Mommy Mondays: Do You Let Them See You Cry?

Let me tell you a little bit about the way I parent.  I talk about feelings.  A lot.  When my son, Oliver is laughing, I acknowledge that he is happy or that something is silly.  When he hits me, I tell him that I notice that he’s angry (although hitting is not allowed).  And when he cries, I hold him close and let him know that I know that he feels sad.  I never tell him not to cry.  I just ask him to let me know when he is done and that I’ll wait until he is.  Crying is a normal reaction to sadness, anger and frustration in our household.  It’s a human reaction and we treat it as such.

It’s been my position since the beginning of this whole cancer business to be as upfront and honest with Oliver as possible.  While he is too young to understand cancer and what it means, he perceptive and observant and knows instantly when something is different.  It’s amazing how he questions everything in his world, making sure it is all as it should be or he will find out the reason why it’s not.

When I had my mastectomy, I didn’t hide my wound or scar from him.  He watched me change my drains, clean my wounds, he has seen me in pain.  When chemo took my hair, I didn’t hide it with a hat, pretending nothing was different.  I slowly introduced my new look to him, letting him know that this was the new me, the new mommy for a while.  When I started wearing compression sleeve and bandaging my arm due to lymphedema, I let him know that I was having problems with my arm.  Honesty and openness have been my policy, while making sure that all information was developmentally appropriate.

I don’t know if I have always gotten it right.  What is the right way to explain the side effects of cancer to a toddler anyway?  I just know that I have always tried my best.  But the one area where I have faltered and questioned my choices is when I have cried.  Which has been a lot, especially lately.  For whatever reason, I have been okay with Oliver seeing my physical wounds but I feel the need to protect him from my emotional ones.  I don’t want him to see me cry.

There are times when Oliver has caught me crying.  He’ll come up to me and say, “Mommy, you are crying?”  This would be a perfect opportunity to let him know that mommies get sad too and cry sometimes.  That it’s ok and human.  But that’s not what I have done.  I quickly wipe my tears and swallow my sadness.  “No, mommy is not crying.  Mommy is happy!”  “You are happy?”  “Yes, you make me happy.”  And he does.  That’s not a lie.  But life has made it hard to smile in this last year.  I’ve had to cry a lot.

What am I afraid of?  Why can’t I cry in front of Oliver?  First of all, I don’t want to scare him.  I think that seeing a parent cry can be frightening for a child.  We are supposed to be a pillar of strength.  In control.  Crying can represent a break in that control, of things falling apart.  Secondly, sometimes I cry a lot.  I don’t want him to know me as someone who is sad all the time.  I don’t want him to begin blaming himself for my sadness.  But mostly I want to protect him.  I want to protect him from all that is evil and dark and broken in this world.  And right now, I am broken.  I’m slowly picking up the broken pieces of my life after a traumatizing year and gluing them back together into a new, imperfect me.  But as I glue those pieces back into place, you can still see the cracks from where I shattered.  It is from those cracks that I am vulnerable.

Is it wrong to let him see my vulnerabilities?  I believe in my heart that the answer is no.  I think it is important for Oliver to see that I am human.  I think it’s important to trust him with my feelings so that he knows that he isn’t alone in his.  I want him to always let me know what is on his mind but I think that trust comes with a mutual respect and sharing.  And yet….  And yet, I don’t know if I can do it.  I don’t know if I can share this crippling sadness, pain and fear with him.  I don’t want him to ever have to know.

Do you cry in front of your children?  Are there people you feel comfortable crying in front of and other you won’t let see you cry?

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.

Added A Contact Info Page

Hi friends!  I have received messages from some of you asking me how to get your story based on my last post.  Feel free to either leave it in the comment section of the post, comment on my facebook page or email me.  I have added a contact info tab with a shiny new email address just for this blog!  I’d love to hear from all of you!  Let’s share stories and strengthen our community!!!

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.

Head Bowed, Heart Heavy

“It doesn’t escape me for one moment that so much joy in my life is thanks to so much pain in someone else’s. ” -Lupita Nyong’o in her Oscar speech

There are some days when something happens that snaps you back to reality.  A chance meeting with someone that lets you know how good you have it.  A story in the newspaper that reminds you that you are loved and have others to go home to tightly hold.  On Thursday I had one of those days.  Boy, did I have one of those days.

If you haven’t noticed from my posts in the last few months, I have been in a survivorship slump.  People often think that when treatment is over, life goes back to normal but I have been dealing with anxiety and depression due to what I have experienced over the last year and also from the side effects that I have.

I was in the waiting room this past Thursday morning to see my therapist.  While I was waiting, I needed to use the restroom.  Both were occupied but quickly one of the doors unlocked and I noticed something was banging against it.  My therapist is in the ambulatory care hospital so it’s common to see people with canes, walkers, wheelchairs and in stretchers.  I went over to the door and offered my help.  The man accepted.  He was in a wheelchair and thanked me for opening the door.  “It is so hard.  It is so hard,” he said to me.  “It looks like it’s really hard.  I can’t believe they don’t have a button for people in wheelchairs to press that automatically opens the door!  It’s ridiculous!”  He agreed and began to tell me his story.  He is a stroke victim and this has caused him to lose a good deal of his mobility on his left side.  Then after his stroke he got hit by a car and lost his right arm.  The only extremity that works as it should is his right leg.

We talked for a good ten minutes.  He really needed for someone to hear his story.  I was humbled that he trusted a stranger like me with his life’s tragedies.  “If I want to wear jeans, I have to leave an extra hour to get ready because I can’t zip and button the pants.”  “I don’t have a home care attendant anymore.  No one comes to help and take care of me.”  “I’m working hard.  I can’t do much but God has spared me.  But I try.  Do you want to see me walk?”  And up he stood, walking carefully close to the wall to brace himself.

I don’t know how in the face of such challenges he can remain so positive.  My challenges in comparison are small, they are real but small, and it has plunged me into depression.  I live every day in fear of my future.  And uncertain of it.  But his eyes were bright and hopeful.  He was going to walk again and be free of that chair.  That he promised me.

Right after that I took my seat in the waiting room again.  I opened facebook to pass the time until my therapist came out.  And just as she did and said hello, I saw some terrible news.  A cousin of mine, who I don’t really know but who I recently connected with on facebook died in a car crash.  He married his beautiful wife just three days before.  They were on their honeymoon and for some reason he swerved his SUV out of his lane and hit a bus.  I found this news to be devastating.  Again, I barely knew him but it’s funny how social media makes you feel closer to someone than you actually are.  I watched in photographs as he made a beautiful box for his then girlfriend in which to put the ring that he proposed to her with, and as he excitedly prepared for his wedding, their beautiful wedding day and pictures from their honeymoon that were posted in real time.

You know when you see something or read something and it’s so shocking that it makes no sense?  This was one of those things.  And upon understanding and clarity there is fear, sadness and that feeling in your gut and hands that make you sick with confusion of life’s uncertainties.

Not long after this, there was the shooting on a college campus in Oregon where a shooter entered a classroom and killed ten people.  Another national tragedy at the hands of a person with a gun.  Ten families were changed forever.  Ten families were whole just a few hours before and now they aren’t.

I just wanted to go home and crawl under my bed and hide from this day.  At the same time I just wanted to hold my family tight and be grateful for their lives and my own.

Why does it take tragedies like this to be reminded that we have so many good things in our life?  Even though we struggle, there is so much to be grateful for.  I hate that it has to happen this way.  That my joy and my gratitude are because of the pain and suffering of others.  But grateful I am.