It's Not All Pretty Pink Ribbons

Here is the link to my caringbridge page on this subject:
  It's Not All Pretty Pink Ribbons

Click there and read that first, then come back here.  I have a few things to elaborate on.

Let me start by saying, I love pink.  Someone gives me something pink, and to me it's a caring gesture; it shows that person cares about me.  I wear the necklaces and bracelets.  I use the coffee mugs and water bottles, and the badge holder.  I write in the journal with the pink pen.  My husband wears a pink shirt when he takes me to my medical appointments.  I use the shawl and the blankets.  The candle sits on my nightstand for when I'm feeling a little nauseous.  Whenever I use one of these items, I think of the person who gave them to me with warmth.  When I see someone out in public wearing a pink ribbon, there's an instant sense of comradery.  Most of the times, we stop and chat, tell our stories to each other.

Breast cancer is portrayed with pink ribbons, pink wigs, pink tutus, pink everything.  Breast cancer is perceived as the "easy cancer".  Pink has made breast cancer seem beautiful.  Pink has given the impression that if we "fight like a girl", we'll "kick cancer's ass".  It's not that simple.  I don't think any cancer is "easy".    Most of the pictures we see are happy faces, and other than bald heads, otherwise healthy looking women.  What is harder to find are the sad stories and pictures.  Stories like the woman on her hospice bed, looking gaunt and much older than her years, at the end of her life.  The posts I've seen that say "I've had the talk with my oncologist.  There are no other options left."  Or, similarly, "I can't take the side effects of the medicines anymore.  I'm thinking about stopping my meds to have better quality of life, even though I know it'll be shorter."  These are not direct quotes from anyone; I am paraphrasing things that I've seen. 

In all the things I've learned over the past few months, one of them is this:  It seems that Stage IV people are put in a totally separate category than earlier stage people.  It seems that Stage IV people scare early stage people with their stories, and their mortality.  One lady said that she was actually asked to not come back to a support group meeting because she was scaring the other ladies.  Now, I ask you -- What in the hell kind of support is that?!  I think this kind of thing stems from the fact that for early stage patients, they are told that they'll get through treatment and be cured.  Easy peasy.  30% or so are then shocked.  Shocked, I tell you, years later when their cancer comes back.  It's Stage IV at this point.  Now, I'm not saying that my friends and family have treated me differently.  My friends and family have been wonderful.  There will be a future blog post about "my village".  It's public perception I'm talking about here.

I think that part of the problem is that most people don't understand Stage IV, that Stage IV is different.  In my personal experience, I can't tell you how many times people say things to me like, "I thought you were done with treatment." or "Are you still...." with a puzzled look on their face, or "You have another infusion, I thought that was finished."  "But you look good!" Let me set the record straight about that right here. 

While I was on chemo, in addition to the premeds, (Tylenol, Benadryl, Dexamethazone, Zofran), I was also given Herceptin and Perjeta.  Herceptin and Perjeta are used to treat patients who are HER2+.  From what I understand, early stagers receive these meds for one year after chemo.  Us lucky Stage IV people get to be on them for the rest of our lives.  The. Rest. Of. Our. Lives.  So I will still travel to Georgetown once every three weeks for infusions. There is also a daily oral medication that I take (Tamoxifen).  Again, there are differences.  Early stagers, I hear, take this medication for either five years or ten years.  Me, I get to take it for the rest of my life.  Keep in mind these three lifetime medications come with a lifetime of side effects.  Hot flashes, nausea, and a few other ones that I won't type here.  I still tire easily, need help walking when I'm super tired, get super tired super quick, and will cry at the drop of a hat.  Exhaustion is a big part of it.  Sometimes I have words in my head that I want to say, but they just won't form; sometimes I can't remember the name of a person who I've known for a long time, all of which is incredibly frustrating and most of the time makes me feel incredibly stupid.  Statistics say that the average Stage IV patient lives on average three years after diagnosis.  I choose to not go by that, since there's no way to know how long the cancer had been in my body before my diagnosis.  Also, how old is that information?  Things keep progressing, so does my life span (hopefully!)

The point it, I think the whole pink ribbon campaign has jumped the shark.  I think it started off with good intentions.  It was a great idea.  Billions of dollars have been raised, but how far have we come?   Still so many dying.  We're aware.  I think there is not one person on the planet who is not aware.  The push now is to shift those awareness dollars into research dollars to actually start saving lives.  Yes, lives have been saved by early detection.  But, remember, 30% of those "cured" will come back as Stage IV.  So, were they really cured in the first place?

There was a particular woman, Holley Kitchen, who has been a big advocate for Stage IV awareness and research.  She posted a video that went viral.  Here's the link to that.  Please watch it.  Then come back here.  There's an update.

Holley Kitchen

Since the video, Holley has been active.  She's been interviewed.  She was on Jenny McCarthy's radio show.  She tried to make a difference.  Holly died yesterday....  Google her name.  Look at her story.

Please, do some research on Stage IV.  It's serious.  It's not fun.  It's not a sorority.  It's chemotherapy.  It's breast amputations.  It's radiation.  It's CT scans, bone scans, MRIs every three months; blood tests more often.  It's a medi-port that I was expecting to have taken out a year after treatment that I realize will never be taken out because I'll never finish treatment.  It's mortality coming up and slapping you in the face.

Here are some good places to start.
http://metavivor.org/
I am Susan facebook page

Comments

  1. Thank you for the thought-provoking post. Yes, I agree, pink does indeed give people the wrong impression that cancer is somehow less ominous than the color pink would have us think. And to ask someone in stage IV cancer not to go to meetings as it would scare others is a denial many people have. It is the denial of the unknown, the uncertain outcome of a disease such as cancer. Let's face it, facing our own mortality is scary, particularly when we have children and all we think about is
    how they will survive without us. And that is the rub, the fear we all have whether we're cancer patients or not, the fear of mortality. But we can begin
    our fears by opening up to each other or not. Those whose prognosis is not too good as well as those of us who are here to support life in each other have the opportunity to show we can be there for each other by not pretending and giving cosmetic lip service to the suffering and dying. May we never give on each other. It takes a village, it takes compassion and bravery. Let's do this together.

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  2. Great Blog Tammy and thank you for sharing your very personal story.
    Renee

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