There’s a Rant Coming On…

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You probably know that there are issues related to the Kohl’s/Komen joint “sell stuff for the cure” campaign. I’ve written about it, as have others. If you don’t know, METAvivor has sought counsel and we will be providing updates as we can.

In the meantime, I’m not the only one who has written about the issue. Fellow blogger Lara Huffman has a piece on her blog, which you can read here: http://getupswinging.com/. Her piece in excellent and has sparked a great discussion. One comment in particular, however, has set me off. It was a comment from a woman named Patti, who is taking some heat over there, so rather than add on, I thought I’d share my response in my own space. 

Patti says:

I don’t get why metastatic “survivors” don’t think they are included in breast cancer awareness month or consider themselves ” survivors.” I personally hate October and am a reformed 3 day walker, but I just don’t understand why those with metastatic disease aren’t supposed to have hope and take offense that they have a day set aside for them. First there are complaints about October in general, which I agree that it is over commercialized and a constant reminder of death ( in my experience), but why complain about the month and then complain not enough days are dedicated to metastatic disease. It makes no sense. But a survivor is technically anyone alive after diagnosis, metastatic or cured. Complaining that to much attention is dedicated to survivors just makes no sense. I personally think that success stories are good for helping moral during tough times. It’s good to know that people actually live after diagnosis, whether it’s living with metastatic disease or getting “cured.” And it’s good to see that after being mutilated by cancer, we can actually get pieced back together and, even with the constant worry of recurrence, swollen arms, infertility, fear of cancer from all the warning labels of anything we ever had to take for cancer, and physical limitations and pain, there is still hope for life.

The irony of this comment is that the naiveté expressed is exactly what Komen has created by marginalizing metastatic patients and projecting happiness and excitement over as the rule.

I followed Komen’s rules. In fact, I did one better! I got my first baseline mammogram at 35. After all, early detection saves lives, doesn’t it?? Not only did I get my mammogram, but as a result I was diagnosed early – Stage II – let’s celebrate. Pink boa and a cosmo anyone? I followed all the treatment rules for young women too: aggressive surgery (bilateral mastectomy), 6 rounds of the roughest chemo they could give me, and 5 years of weight gain and a crushed libido thanks to tamoxifen.

I was one of those who, to borrow a phrase from Patti, lived “…after diagnosis…getting ‘cured’.” I even passed that magical 5-year mark that we delusionally use to measure “success.”

And then it started – two years of watching my tumor marker rise, month by month, with the innate sense that the cancer was there. However, we couldn’t see it lurking in the dark of my bone marrow and so it went untreated.  22 months and eight scans later I was, much to my relief, finally diagnosed with mets. Is that what “survival” looks like to Komen? Nope, their mandate was for me to celebrate with walks and runs and shopping for the cure. My fear, my years of sleepless nights, my cancer doesn’t fit with their mood…

Patti says, “…it’s good to see that after being mutilated by cancer, we can actually get pieced back together and, even with the constant worry of recurrence, swollen arms, infertility, fear of cancer from all the warning labels of anything we ever had to take for cancer, and physical limitations and pain…”

That’s GOOD? Are you KIDDING ME? Set aside those worries, swollen arms, your dream of children or grandchildren, fear as your constant companion, the limitation to your activities, your pain – because you got through early treatment, you should feel good. I’m sorry – but I am too polite to list the rage of curse words I’m thinking right now. Offer that life to any single person untouched by cancer and let me know if they think that’s a “GOOD” way to live…

Here’s what you missed, Patti – that beautiful life you describe – the one of unfilled dreams, aches and pains that never dull – that’s life after early-stage treatment. We still haven’t gotten to the mets patient, have we?

“…I just don’t understand why those with metastatic disease aren’t supposed to have hope and take offense that they have a day set aside for them.”

Really, Patti? MBC patients who walk every waking moment, and plenty of restless dreaming hours as well, are among the most optimistic people I know. We do set aside pain, fear, anxiety, the gnawing sense that our bodies are destroying themselves from the inside. We squeeze life in between doctors appointments and hospital stays. Not only do we take medications for our treatments, but we take medications for the side effect, and it’s decidedly common to take more meds for the additional side effect. We live knowing that there will never be another day without cancer in our lives, or the lives of our loved ones – not one single day. We  live despite our worries  about when this treatment will stop working and how our bodies will tolerate the next one. But we remain engaged, living daily, loving our families, learning all we can about our disease and the cutting-edge therapies to keep it in check, advocating for ourselves and others, getting involved in the research, joining clinical trials (often to help only those with early-stage diease) and fighting against the injustices organizations like Komen wage against us. We also seek to educate people like you. But of course, we should be happy, the “survivors” might get upset.

Maybe, just maybe, it’s time for the rest of the pink world to stop telling us to buck up and HEAR why we reap the joy of every moment. Patti, please tell your friends…

P.S. This isn’t about Komen, or any other particular organization or group. This is about the world of pink in which we’ve come to live. While perhaps unintended, the wrong that in squelching then voices of nearly 1 in 3 of those living with breast cancer. And when 1 in 3 people are allocated a single day, it’s hard not to think we don’t want to be heard from. The wrong must be righted.

16 responses »

  1. Great RANT! What is really naive is when these folks recur, and the cancer has spread to the brain and they find out that the life sustaining treatments are not there for them and they must go away and die then maybe they will get what we are saying!

    • God forbid, Theresa! That’s EXACTLY why our voices will never be quieted! We will not go away quietly. We will suck the marrow of life and live aloud!

  2. Well said Lori! Why would anyone (Patti) point a finger accusing “those with metastatic disease” of not having hope. Patti has to stay away from “those people.” I guess MBC interferes with ruining her “reformed 3 day walker survival” because October reminds her of death..in her experience…Really? And then she’s angry because there’s a day devoted to metastatic breast cancer…She is upset because I guess from her thinking MBC deserves no recognition or awareness I guess Patti has to ignore stage IV because “those people” need to stay quiet. Her ignorance reminds me of the Kellers….Grrrrrrrr..

    • I agree Susan! No one has the right to tell any of us, especially those of us living with MBC, what do do, what to feel, or how to life our lives!

  3. Lori, This is a great article. I have NED and I do not celebrate that my life was pieced together after my breast cancer treatment. We need to end this disease. We need to be able to prevent it in our daughters before it starts to grow. Prevention means that we find it before body parts are lost. Before toxic treatments have to be given and before cells navigate their way to important organs. We need to move beyond this early detection conversation and into the early prevention conversation. Let’s not celebrate til we end it for all women. Joy

    • Thank you Joy! While we may differ on the priorities of cancer research, we are definitely on the same page! Hopefully we’ll be celebrating together some day soon.

  4. Hi Lori, Lovely to meet you over a blog post. Your writing is powerful and inspiring. We share the same name, except I added an “e”. I thought it would add some magic to my name, make me different than other’s. That could not be a truer statement.

    Let me first say that I have had over 37+ years of cancer issues. I was a young girl of 17 when I developed Hodgkin’s Disease, then Skin Cancers, Breast Cancer ( a tumor found by the way by a self breast exam, when I had a normal mammogram 9 months earlier). So, I am not immune to the devastation of what Cancer disease does not only to the physical body, but the mind as well. I write about my very personal experiences in my website blog: http://www.breastcancersucks.com.

    Back in 1976 when I was receiving treatment for Hodgkin’s,(mantle radiation) which covered my chest, stomach, pelvis, backside I did not know by treating the disease (and a hopeful cure) that those radiation efforts could possibly cause secondary cancers. My parents, nor I, knew nothing of a connection to having serious latent side affects by the very treatment that “cured” me. In retrospect, I wonder where the”awareness” of this cancer was at the time? We didn’t have the age of the internet.. All I knew, at the tender age of 17, I had some lumps that needed to be removed. Being young and naive had it’s advantages. Maybe with more awareness of the disease would have spurned a change in treatment options, or led to greater research which would of found a cure? I don’t know.

    Fast forward to 2004, a diagnosis of Stage II Breast Cancer, a 2.5 cm tumor/with DCIS in the left breast, and DCIS throughout the right breast. I was scared ****less. My tumor grade was ominous. The very first Breast Cancer group I joined online was “breastcancer.org”. Information was everywhere! I reached out to Susan G Komen, not once, but twice. No answer. I surely thought that they could help me in sorting out this scary time in my life, but they did not. After a year of recuperation of bi-lateral mastectomies, reconstruction, implant problems, etc I finally made it through another cancer diagnosis. It will be 10 years this April I have been free breast cancer of re- occurrence.

    So, two cancer stories. One of no awareness, the other tons of awareness.

    I posted a tweet about this Komen/Kohl’s issue last week. I’m not touting pink tutus, pink shirts or pink in general. I think woman (and men) who are going through breast cancer, or have survived are getting a tainted message. How do we collectively, as cancer patients, change the dialogue about awareness of the disease?

    True leaders, (IMHO) inspire. As a cancer patient nearly my entire life, I’m hopeful that each side can meet to change the voice of awareness. We all, as one, want the same thing.

    A cure.

    Lorie
    http://www.breastcancersucks.com

    • Thank you so much, Lorie, for your thoughtful and I’m thrilled to hear you remain NED! And I agree with you – we need to find and push for our shared purpose. However, we MUST include mets patients at the table, which most breast cancer organizations fail to do…

  5. Last Pinkober, shopping in the grocery store, a young women kept after me to buy lemonade for breast cancer awareness. When I politely said “no” she started in pleading with me to buy it. “We have made so much progress. NO ONE dies of breast cancer anymore. My aunt had it and it got in her bones and she died, but that NEVER happens anymore.” At that point, I quit trying to pick through the produce and turned to her and told her, “I have breast cancer. It is in my bones. Someday I will die from it.” A little blunt. She cried. She said “but they told me…..” I felt bad. But, I forgot something, had to go back to produce and she was back to harping her exact same lines.
    That type of thing, and lack of metastatic research funds, and articles like the Kellors, are why we metastatic cancer patients feel we are neglected, why we are “the elephant in the PINK room.”

    • Hear, hear, Elizabeth! While I do understand now that I only THOUGHT I understood after my early stage treatment, it is amazing how hard it is to get this message through!

  6. Pingback: Drowning in Pink: An Update | pugtato

  7. I was metastatic from my first diagnosis. Although surgery isn’t standard of care, sometimes it is thought to be beneficial so I had mastectomy almost a year after my diagnosis. A couple of years later I was sent back to the surgeon to have something checked out. I asked him why the hospital newsletter has never featured anyone with metastatic breast cancer during my five years as a patient. He said they don’t want to scare those with early stage disease. To which I said, what about ME? It’s ok to pretend people like me don’t exist? It’s ok for me to be scared?

    • Thanks Beth! HOPEFULLY Patti had a chance to read it and came away with a better understanding of why MBC patients feel marginalized. Maybe Kohl’s/Komen should read it too….

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