I've always been on board with raising awareness and heaven knows I love a good event. But friends, I've been struggling in the past weeks as everywhere I turn I see pink. I would really love a chance to help others see, maybe not red, but just a little more clearly.
It's hard to explain--I'm not entirely sure how I feel about it--but allow me a minute to at least attempt what it feels like to sit on the other side of this not so rosy line. I’m still processing, but I’ve spent a few weeks learning about why women with stage 4 breast cancer aren’t exactly excited about all aspects of the PINKtober campaign. It’s not just the constant pink reminders of our incurable disease, but it's, more so, for many, some misleading messaging and, unfortunately, maybe even the misallocation and misrepresentation of funds raised.
Yes, the pink ribbon campaign has done amazing things to raise awareness and dollars, but most people do not realize how little of that includes stage 4 breast cancer. The percentage is in debate--Some say less than 2% ... others claim it's now risen closer to 7%--But, regardless, 2% or 7% going toward research for stage 4 breast cancer is simply not enough.
Metastatic Breast Cancer (MBC), also called stage 4, is the ONLY breast cancer which kills and yet only a tiny percentage is allocated for this research.
Read that again.
Furthermore, 1/3 of women who "beat" early stage breast cancer will at some point in their life become stage 4/metastatic. Yes, you read that correctly, ONE-THIRD.
Like me.
No one really likes to hear my story because it doesn't fit any of the things we know or like to believe. 12 years ago I was "early detected" and “barely stage one." I had pretty minor cancer and, yet, chose aggressive treatment. Did all the things. Fought like a warrior. Was told I was "cured" and had "beaten it." Was called a "star patient" and assured because of my early detection and fighter mentality I WAS "the poster girl for beating breast cancer.” I remember my oncologist saying early on, “Jody, you’ll be just fine. You’ve nothing to worry about.”
His words sometimes haunt me.
I had less than 1% chance for this beast to reoccur.
But, against all the odds, it did. It reocurred.
Now as a woman with MBC (stage 4) I will never "be cured" or "ring the bell" or "kick cancer's ass." Nope. Never. And so all that warrior and battle and victory talk is tricky for women like me. The messaging in this month makes it sound like if we (only) fight hard enough we can achieve victory. The problem with this is that the opposite then also feels true when we lose--and those of us with stage 4 will lose. “According to the American Cancer Society (ACS), the 5-year survival rate after diagnosis for people with stage 4 breast cancer is 28%.” Another not so gentle way of saying that is 72% of women diagnosed stage 4 will not live past five years.
So what does that mean in the face of all this pink? We didn't fight hard enough? I don’t know. At best, it's confusing. I do know our main hope (now) is not going to be curing cancer or kicking its ass, no, it’s going to be buying time and praying for more treatment options to give us more years. That takes research. That research takes dollars.
In the meantime we hope to prolong life.
And that is exactly why I don’t “look” like a stage 4 patient. That’s a topic for another post, but I know this confuses some people. "Well, gosh, Jody’s busy planning events and posting photos of her chickens and she has all of her hair. Seems like she’s doing great. She looks good. Surely she can’t be THAT sick." Well, it’s because, for women like me, it is no longer a sprint to be healed, it’s a marathon to stay alive. It’s the long game. We strategically are given medicine and treatments to keep the cancer at bay and keep us living life. At some point cancer will outsmart my current treatment and those meds will fail me. And at some point, I’m sure you’ll see me looking a whole lot more like a stage 4 patient. I know that’s a lot to process. I’ve had conversations with many of you. It doesn’t make sense. It’s easy to forget (for you maybe, not for me). But trust me on this, I know what I’m talking about. There isn't a silver bullet when it comes to stage 4. MY PLAN is for the treatments available to work well for me and give me LOTS and LOTS of years, but I have learned too much, I know if that's what happens, I will not be the statistic, I will be the outlier.
Sometimes learning things is hard.
I am also learning to understand why PINKtober isn’t an easy thing for women with MBC. As this has, unfortunately, become a big part of my life now, I spend a good amount of time connecting with others walking this same walk.
I'm in several (Facebook) groups with thousands of women with MBC. I read their stories and struggles every day. I cannot explain to you the pain and sadness. Women who are alone and unable to work. Women who can't pay for treatment and have to fight with insurance companies. Women who bounce from one brutal treatment to another knowing it will never end. They will always be in treatment. Forever. Women, literally, at the end of their rope. Heartbreaking doesn't begin to explain it. There is nothing festive or celebratory or rosy-pink about it. I don’t really put myself in this category because I AM still living a pretty normal life. Yes, lots of side-effects and, yes, lots of mental/emotional/anxiety battles, but also lots of wonderful stuff too. I’m grateful. And lucky.
But, I don't have to tell you how hard it is for the women who struggle to see companies using the pink ribbon as a marketing ploy to tug at heart strings and increase sales. And, yet, we know that's exactly what happens in some cases. Certainly not all cases, but in some. It feels like gross commercialization. At times it’s hard to see some of the flippant, casual, and sometimes crude, comments made and posted. Those can hit differently when you're fighting for your life. It’s also agonizing to see all the hype and excitement over pink bows and pink socks and pink tennis skirts for a fun-feel-good-event. I once wore the pink tennis skirt and played in the pink tennis tournaments. Now, as stage 4, I am having so much joint pain and fatigue I can’t imagine I’ll be out on the tennis courts ever again. Instead, I brush by my tennis bag every single day when I walk through my garage and have to wonder.
I’m not saying it’s all wrong. Like I stated earlier, there are some great things which have been achieved in raising awareness. We are certainly ALL AWARE. I’m just saying there’s more to the story. We need to be more aware of asking the question-- WHY aren’t more of these funds raised going toward the breast cancer which kills women? Especially knowing that 1/3 of all women who have "beaten" it, will progress to stage 4 --even the very best case scenarios, like me.
Early detection and awareness are great, but, I was both early detected and (more than) aware and there is not one single doctor who can explain why my breast cancer returned. Not one. Two of my three oncologists didn’t believe it. One of them told me to “go home and not worry about it,” even after the scans showed lesions. Crazy, I know.
Last week, out of my own wrestling, I asked the question to the specific Metastatic/Stage 4 groups of women I am in on Facebook. I simply asked this --
"Why is PINKtober hard for so many of you?"
I received an unbelievable amount of stories and responses to that question. Hundreds, in fact. Most all of them explaining that they "dreaded" this month and felt "assaulted" by the misrepresentation and “gross commercialization” of the pink ribbon. These are women who are in the darkest, deepest trenches of breast cancer. Women fighting for a few extra years of life and dealing with one awful treatment after another knowing there won't be an end ... until there is.
I think their voices need to be heard.
One woman in this group shared an article she had written on why more stage 4 research MUST be the goal:
“While the pink ribbon is well-known for representing the fight against early-stage breast cancer, it is not inclusive of stage IV.
It’s a sad fact that today, nearly everyone knows someone who’s had breast cancer. Yet there’s one fact not everyone knows:
30% of people with “cured” early-stage breast cancer who’ve “beaten” the disease will eventually see it return as stage IV, also known as advanced or metastatic breast cancer (MBC).
That means the disease has spread to other parts of the body, a diagnosis that carries an average life expectancy of around 36 months. While the average survival rate of a breast cancer diagnosis is 90% over five years, that statistic tumbles for metastatic breast cancer, dipping to 29% over five years.
Many women with metastatic breast cancer will live only a handful of years. But about one-third will live at least five years after their diagnosis. And there are outliers who live for 10-15 years after such a diagnosis.
MBC is the only form of breast cancer that kills.
Yet while MBC claims the lives of 115 people in the U.S. daily, less than 7% of US breast cancer funds raised go toward researching new treatments for it.
Worldwide, more than 685,000 people die of MBC annually.
Those shocking statistics explain why more and more people are embracing a reimagined breast-cancer-awareness ribbon that goes beyond pink — there’s no surviving or “beating” MBC, just buying time via treatment.
The pink ribbon has done a lot of good. It has reminded people to get screened, and it has helped to raise a huge amount of funds. But at the same time, it has been used to raise money for purely corporate pockets, including the pockets of several prominent breast cancer charities.
It has become a symbol of the idea that everything will be OK, breast cancer is only an annoyance, just a year out of your life, and you'll go on happily from there. The pink ribbon as a brand is a misrepresentation of the truth of breast cancer.
And, most importantly, it is not a cure.
What the ribbon should represent is the need to fund medical research in order to save lives.”
Pink is not a cure.
Research can and has saved lives.
With more and more new treatment options, patients like me have a better chance to live longer.
Thus a tricolor ribbon, for metastatic breast cancer, aims to raise awareness for the need to direct funding toward the development of life-extending treatments.
In it, green represents the triumph of spring over winter, life over death; teal symbolizes healing and spirituality; and a thin pink-ribbon overlay signifies metastatic cancer that originated in the breast.”
Dear friends, please don’t view this post as sour grapes. Sure, I have some pretty sour moments, but mostly, I do have a lot to be very thankful for. I spend most of my days really trying to focus on the beautiful and the blessings of each day. Those of you who know me, know that my life is truly in God's hands. I trust Him with it. Completely. But I also have felt a prompting to go ahead and share some of my newly gained perspective. I wish I didn't know so much. I wish this wasn't my story. But it is and I believe that our stories and our journeys and our lessons learned are meant to be shared.
We've raised awareness, now it is time to raise the bar.
One last thing--there's an organization which does use its dollars raised for MBC research and funding.
Please check out the METAvivor organization. METAVIVOR.ORG
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