Wednesday, October 2, 2013

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.