I Hate Pink Ribbons

I hate pink ribbons....

As I sit here at my screen, I am looking at a jar of hand cream.

It is an unassuming jar - nothing really that special about the cream itself. It's not imported or infused with oils, scents, or the latest antioxidants.  But still this jar of hand cream is catching me, and weighing heavy on my heart.  I don't move it because it is a connection I have to my sister.




I hate pink ribbons....

This jar of hand cream is the jar that my sister used during her battle with inflammatory breast cancer.  Her chemo and treatment were so harsh on her skin, that she had to bath her burning, itching, peeling skin during her 4 year and 9 month long life and death battle with a bitch, a demon, a monster of a disease.

I hate pink ribbons... 

As a family with a history of breast cancer, we were MORE than AWARE of breast cancer.  My sisters and I have had regular mammograms, done self-exams, and had clinical exams.  Some of us had them earlier than the "recommended" age. We looked for the symptoms that the happy, pinkified campaigns suggested. We always looked for the lump. We were aware. And we didn't know what we didn't know.

I hate pink ribbons...

Still, my sister had symptoms of breast cancer for months and didn't know.  She was diagnosed at stage IV of inflammatory breast cancer.  SHE HAD NO LUMP.  She had what she thought was a rash. She had some swelling that she attributed to being lopsided.  She had a dimply - orange peel like texture to her breast that she thought had to do with hormones or the rash.

I hate pink ribbons. 

None of what we were aware of ever told us to stop and take a good LOOK at our breasts. We weren't aware of the symptoms of inflammatory breast cancer. With as many pink ribbons as we saw, as many lumps we looked for, as "aware" as we were as a family, none of us knew about this type of breast cancer and these symptoms. We learned pretty damn quickly that this type of breast cancer leaves women with only a 35-40% 5 year survival prognosis. My sister died 4 years and 9 months after her diagnosis. We learned that it is a less common type of cancer but a very aggressive cancer that is diagnosed at a younger average age than other types of breast cancer. We learned very quickly that it often does not manifest in the form of a lump. We learned that there are visual changes that can accompany IBC, that we were not aware of. (For more information about IBC - inflammatory breast cancer visit The IBC Network, and see the sister check graphic above for possible visual cues. )

I hate pink ribbons...

So why do I hate pink ribbons? I hate them because they do not tell the whole story.  The pink ribbon has become the symbol of the "cause of awareness".  I hear slogans of "support awareness"- just what the hell does that mean? At this point in history, if you are not aware that there is something called breast cancer you have lived your life under a rock.  I hear of parents fighting for their kids right to wear a band with the word "boobies" on it as a matter of their right to free speech and belief.  I see retailers and businesses pushing pink in "support", but fail to mention if any of your purchase supports anything.  I see the pink ribbon associated with community, and happiness, and fun - which is not a bad thing, but that was not the ending of the story for my sister and our family.

I hate the pink ribbons because to me, they trivialize my sister's death.  To me, they don't support research, education, action, prevention, access to support for patients and families that are in the trenches of the war with cancer.  The pink ribbon doesn't show what families that have lost loved ones have gone through.  They don't show the grieving, the heartache, the life change that happens when a woman or a man dies as a result of breast cancer. I hate the pink ribbons because they leave out the what you don't want to hear about cancer. They are a symbol for awareness. We could have all the awareness in the world. But without action, education, research, support for patients and family, it means absolutely nothing.

I hate pink ribbons because they show the pretty side of the pink movement - cancer is anything but pretty.

Is this an angry writing? Yes. My writings about this used to be hopeful as she truly fought the good fight. She won a lot of battles. But in the end - cancer won the battle for her breath. My anger comes from losing my sister. It comes from grieving.  It comes from wishing there was a better prognosis for women who are affected by IBC. It comes from feeling like we were on top of awareness, and we weren't.

To be clear, I am not saying that you should not engage in any campaigns. MANY organizations do good.  I am simply saying to be aware that there is more that is needed than just awareness. Please - educate yourself.  In today's information age, you have access to search and learn about breast cancer. There are so many good resources out there.  Don't rely solely on a campaign or an awareness month to understand YOUR health.  Be a good steward of your life. Take action and accountability where you can - learn what you can.

Let me revisit a statement a few lines back.  In the end, cancer won the battle for my sister's breath. BUT, it did not win the battle for her spirit and her soul.  She is singing praises in heaven with her Lord and Savior Jesus Christ, and that brings us peace. However, in our humanness, until we see her again, we will miss and grieve for her. No number of pink ribbons can change that.

As I sit here looking at this jar of hand cream, I think of my sister. And I think I HATE PINK RIBBONS.

Here's a challenge: Ask a business person who is pushing pink in support just how much they are donating toward a research cause, a patient support cause, a treatment cause, and education cause... if they are donating something, than great. If not, take what you would have spent on that item and donate it directly to an organization that supports beyond awareness. 

For Amy

This is not a typical post for AZ Mom of Many Hats.

But, Amy is not a typical person.  She is my sister. She is amazing.

I have posted about Amy several times before over the last five years.  The first post My Sister's Cancer being about finding out in February 2008 that she was diagnosed in Stage IV Inflammatory Breast Cancer - an invasive and very aggressive form of breast cancer that does not generally have a defined lump.  There were successive posts on her journey and battle - many of them that brought hope and some that brought angst. All of them were in honor or celebration of her - and for a kick in the ass to the bastard of cancer.

This post is no different.

Amy is larger than life.  From her colorful hair to her love of fancy rats, there is nothing about her that is not vibrant, interesting, and totally genuine.  Each person that knows her would describe her essence as strong, witty, straight forward, authentic, dedicated, compassionate, and even snarky.  As a woman with a teacher's heart, a deep and devoted faith, a compassionate heart for all of God's people and creatures, and a strong sense of right, her actions towards the world have influenced, touched, and nurtured her family, our larger family, friends, students, colleagues and even some she has never met.

She is a force to be reckoned with in this world - in a good way.  I say it again... She is amazing.

On November 12, 2012 the world forever changed.  After many valiantly fought battles, at the age of 45, Amy passed away of Inflammatory Breast Cancer (IBC). She fought through chemo and radiation and all of the possible side effects that come with both. She showed strength and grace as she pushed her tired body through the day to day as best as she could - volunteering, mentoring, running her rattery,  being mom, wife, daughter and sister, singing on the worship team at her church. She fought hard, she fought long, and she fought admirably.

My heart, our family's hearts are so heavy and our existence will never be the same.  We no longer have the physical presence of Amy as mom, wife, sister, daughter, aunt, cousin, friend.  We will forever miss her presence here and always long for more time with her. But, the force of Amy, her essence can't be defeated. In that we find some peace.

Through her fight, many were educated about Inflammatory Breast Cancer.  Her teacher's heart wasn't stilled by the battle.  

Through her fight, she showed strength and grace. Her spirit wasn't crushed by the battle. 

Through her fight, she showed tremendous love for others.  Her compassion wasn't soured by the battle.

Through her fight, she showed what it was let go of things out of her control.  Her will wasn't destroyed by the battle. 

Through her fight, she left the lessons, the words, the actions, and the seeds that her family needs to move forward and be strong and good men in the world.  Her loving, nurturing and mothering were strengthened ten-fold by the battle.

Through her fight, her identity never became Amy, the Inflammatory Breast Cancer patient.  She was always Amy, who happened to have this battle present in her life. 

Through her fight she remained rooted in her faith, even when she didn't understand why this battle was hers.  The battle didn't destroy her trust and faith in God and her Salvation.   

She could not win every battle. But she NEVER lost the war.  Today she is singing and enjoying the splendor of HIS courts.  She is in perfect peace and whole.  That is something that cancer could never take from her.

Don't Let the Silence Continue

Women, men, physicians - please learn about Inflammatory Breast Cancer - IBC.  There is so much progress in many areas of breast cancer research and treatment.  We hear about that all of the time in the "pink" campaigns. What we don't hear is the dark side of breast cancer - the types of breast cancer like IBC, and that MOST women diagnosed with a cancer like IBC will die. Whether it is unpopular, unwillingness, or unawareness, this conversation in the breast cancer dialog is rarely had.  The silence is killing women, and men.

We knew about breast cancer.  We didn't know about Inflammatory Breast Cancer.

Learn more about Inflammatory Breast Cancer at:

The IBC Network
http://www.TheIBCNetwork.org

MD Anderson Cancer Center
http://www.mdanderson.org/education-and-research/departments-programs-and-labs/programs-centers-institutes/inflammatory-breast-cancer-research-program/index.html

The Pink Haze - Awareness Is Cheap, Action is Priceless

As most of you probably already know, October is National Breast Cancer Awareness Month.

It seems almost impossible to NOT know.  The stores are full of pink ribbons, pink products, and pink commercials. The lovely pink hue permeates just about everything, from retail, to media, to bumpers stickers, to T-Shirts, to bracelets.  There is even controversy as people don slogans and sayings to work and school, supporting breast cancer "awareness",  arguing a right to free speech when questioned about them. We walk charity walks, stuff donation jars, and get in the pink spirit. We eat, sleep and breath pink. Pink is a part of our landscape - and we are becoming immune to it.

We are in a PINK HAZE - all for awareness.

But what about ACTION?

Awareness is a good thing. But it means nothing without action.

Women AND men are still dying of breast cancer.  Yes... that's right... men can be diagnosed with breast cancer too. According to BreastCancer.Org, (visit link for more statistics)

• 1 in 8 women are affected by breast cancer. 
• Breast cancer is the most commonly diagnosed cancer in women (aside from skin cancer).
• In 2011 there were more that 2.5 million survivors of breast cancer, but over 39,000 didn't survive. 
• Approximately 2,150 cases of breast cancer were diagnosed in men.

The point is, knowing about this doesn't change it. Doing something about it does. ACTION is what can change how this bastard of a disease affects women and men.

What are some of the action steps you can take?  I am so glad you asked...

• Get mammograms and other screenings, do self checks, and have clinical exams.
• Support funding for research - know where your donation dollars are going.
• Know that breast cancer is not always a lump and know other signs to look for- it can save lives. KNOW THAT THERE ARE OTHER SIGNS BESIDES THE LUMP THAT WE'VE BEEN TRAINED TO LOOK FOR AND LOOK FOR THEM. You are your own best advocate and  know what is normal for you. (See the SISTER CHECK)
• Learn about IBC (inflammatory breast cancer.)
• Talk to your doctor if you feel OR see any changes in your breasts.
• Don't be embarrassed to tell your significant other if you see a change in your breast OR theirs. Sometimes a second set of eyes of someone who knows us intimately can be the difference between early and later detection.  Cancer is not a solitary disease. 
• Support groups that make advances in the quality of treatment, the effectiveness of medications, the care of patients, and the support of families with loved ones in the battle is imperative to kicking the breast cancer monster's ass. 

Simple awareness is not enough.  In fact, too much awareness and not enough action becomes a problem in itself.  It turns to a fad, a marketing tool, or even apathy. When we wear the pink shades, it just becomes part of our everyday view and doesn't stand out anymore.  By being saturated with awareness, you could even say that we become less aware. 

Take off your pink awareness sunglasses and put on your hot pink ACTION safety goggles.  It takes work and strength. But with active steps, advancement in the diagnosis, quality of life, treatment and cure for breast cancer can be made. Awareness of an issue is not the same as action on it.

Awareness is cheap. Action is priceless.

Have you checked your breasts recently?

For related posts please visit:
My Sister's Cancer
Breast Cancer Hop: My Sister's Story
The Reality Of Pink

The Reality Of Pink

I dedicate this note to my sweet sister Amy and my three cousins who have battled or are battling Breast Cancer. I also dedicate it to my two aunts in heaven who both battled this disease.

I am spurred to write this as a response to a blog post I saw posted by my sister that talked about how we are "pinked out". The article is a fantastic blog post written by one who is doing their part to raise funds for the prevention, cure, treatment and awareness of breast cancer. From the bottom of my heart, thank you for your efforts to that very special and dedicated person.

The "pink" movement has gotten a lot of attention. Just about anyone in the US who saw a pink ribbon would probably have some recognition with it in regards to breast cancer "awareness". It is a good thing that people know that breast cancer exists, and that they should get mammograms and do self checks. But simply being aware of it is not enough. Pink shouldn't just be seen as a pretty ribbon, a cute water bottle, or a trendy bracelet that has caused an uproar. Pink shouldn't just be limited to one month for people to be "aware" of breast cancer. Pink doesn't stand for something that happens to other people. It doesn't stand for a bonding experience you may have with another person on a fund raising walk. It doesn't stand for something that affects a certain sex.

The thinking needs to change. Pink should stand for reality. The reality that this could happen to you.

This is what pink should stand for. It should stand for the scars that women AND men carry on their bodies from surgeries to remove lumps, lymph nodes, and breasts. It should stand for the pink port-a-cath entry point where drugs are injected, that often themselves can have side effects. It should stand for the previously untouched by the sun skin on women and men who have lost or chosen to take control and get rid of the hair on their heads and the rest of their bodies. It should stand for the red, dry, cracked skin that may be a side effect of chemo for some. It should be for the radiation burns that can happen as a result of radiation therapy. It should be for the scars and the pain that the families, friends and loved ones have if they have lost someone to this disease. It should be for tired and hurting feet on the long road to treatment and recovery.

I get that people may read this note and think that I sound angry. I am. I am angry at cancer. But I am also angry at the watered down attitude that people have about this. I was one of those - until it happened to my sister, and three cousins -and untill there was a total of three out of five women in this generation on ONE side of my family with breast cancer.

Instead of a pink pretty ribbon, would a photo of a pink lumpectomy or mastectomy, a pink burn, a pink port, a pink scalp, a face pink from shedding tears, would those things get the attention and make people snap into reality? Instead of the recognition of pink as a breast cancer awareness marketing tool (and I use that in the sense of recognition) when will we snap into reality? Pink isn't a cutesie marketing and fundraising tool. Pink stands for WAKE UP PEOPLE! THIS COULD HAPPEN TO YOU!

Amy's IBC Journey

Amy's journey with IBC can be found at her website.
http://www.familyaffairratz.com/Amy_s_Battle_I.B.C.html