I don’t typically repost pieces I find on the internet, but this is a must-read!
I don’t typically repost pieces I find on the internet, but this is a must-read!
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.
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.
I don’t mean to kvetch – REALLY I don’t! I generally believe the universe is benign, that bad luck is just bad luck, that bad things happen to everyone – not just good people, and that no one is out to get me.
I’m not a fan of roller coasters. I don’t watch scary movies. I don’t, in principle, understand why I would want to scare myself. I don’t find it thrilling. In fact, some of my finer parenting moments were when I, despite my fears, got in line for Splash Mountain or Space Mountain when Zach was young. Okay, I admit it was I was to ensure he couldn’t fall out thanks to my vice grip on his waist, but I did it. That’s what counts, right?
So imagine my surprise that, at 48, I have to learn to love roller coasters. Metaphorical ones, but nonetheless…
Because that’s the world of living with metastatic breast cancer. There are incredible days and there are awful ones, days when I am thrilled to be alive every moment and days when I can’t help but fear what’s next. Markers go up and they go down. Scans show growth, improvement or stability. There are days when every hint of pain has me worried about progression and pain-free days when cancer crosses my mind long enough to take my meds. And when I wake, I hardly ever know what kind of day it will be.
It’s not going to change, at least not for the foreseeable future, and save how I approach it, it’s pretty much out of my control. So, I think it’s time to leave my fears behind and learn to love roller coasters…
For as long as I can remember my primary identity has been grounded in Jewish community. From summer camp to youth group, that is where I first felt I belonged. So much so that I went on to minor in Judaic Studies in college and focus on Jewish Communal Service in graduate school. Most of my 25-year career has been spent serving the Jewish people, and I have always felt lucky for the chance.
While Jewish peoplehood and Jewish faith are not the same things, I’ve generally taken my faith for granted. I work in a synagogue, after all.
When I was first diagnosed with early-stage breast cancer I felt the warm embrace of both the Jewish people and the Jewish faith. My community could not have possibly been more supportive and I never bothered to think through the distinctions. My connection to them was synonymous with my connection to God. I was grateful for the many prayer groups across the county who held me close, to the strangers who would never know more than my name, but petitioned God on my behalf anyway. And our faith seemingly prevailed. Despite the unpleasantness of chemo and a long, long surgical recovery, I was “cured” and able to leave breast cancer behind me, stronger for the experience.
Today, as a metastatic patient from whom mortality cannot be hidden, I’m less sure. My faith’s teachings are admittedly vague on the subject on afterlife, favoring a focus on what we can and must do in this life over speculation about the next one. We have this time, it seems to say – make the most of it. Enjoy it, but do good things, too. Not because you’ll get credit for it later, but because it’s the right way to be. So after all these years of serving the Jewish community, of trying to do good things, what’s left? I understand I may not die of breast cancer, but I will unquestionably die with it. And as each treatment fails me, my faith is a bit more compromised.
Are God and heaven and hell just human constructs designed to make us feel better, safer, about the mystery that is dying? Are they real in the absence of evidence, in the same way that we can’t see or capture the wind? Or perhaps they exist only for those who have faith. I don’t believe my faith will heal me, as much as I wish it could. Wonderful, saintly people have died of illness, and evil people have lived long and prospered. It’s impossible for me to believe in an interventionist God in a world like that.
Ultimately I believe, with rare exceptions that range from Hitler to the Dalai Lama (yeah, don’t see those two in the same category very often, do you?), that we mostly try to be good, and we succeed and we fail and we go on. I have friends, mostly Christian, who urge me to have faith. I understand why – from their perspective faith is the key to heaven. From mine, if there is one, it is good deeds. And I guess I believe that actions do speak louder than words…
But it begs the question of faith. As the lives of some many fellow bloggers and twitter friends are prematurely stolen from us, as my own health falters, do I have faith?
I remember when my mother in law was diagnosed with mesothelioma. In the months before she died we would have long conversations of faith. She had, once, believed in life after death, and had a notion of it being good. As her death approached however, just when she probably needed it most, her faith was gone, or at least well masked. She came to believe in nothing. I’ve always hoped in her final days, when she no longer had the strength to talk on the phone, that she found what she needed.
Which has me wondering what I need. Would this path be easier if I were a true, unquestioning believer? Would I find comfort in “knowing” what to expect after I die? Perhaps, if I could ever really move from thinking to knowing, a move the skeptic in me is likely to never make. In the end, it always takes me back to the very beginning. Within hours of being diagnosed the first time my anger at what this would mean for my loved ones burst forth. Never mind me, I’ve done bad things in my life. We all have. But to make my loved ones suffer for my actions, the unanswerable question always remained: what could Zach, at the tender age of three, have done to deserve this. That, in the end, confounds my faith; I have not found a way to put my trust in an unjust God.
I figure I have lots of time yet to work this one out…
I am thrilled and honored to be attending the upcoming AACR Scientist <-> Survivor Program in April! One of the requirements for us as advocates is to present a poster. Mine focusing on giving researchers greater insight into who advocates are and what they do. To do that, I need your help.
The survey linked below is 9 questions long and will take no more than 5 minutes. I am not collecting any personal data and your responses will be combined with those of others; you will not be identified in any way.
Please TAKE THE SURVEY to help me explain who we are, what we do, and why we do it!
Thank you VERY much in advance!!
“The new ones?” he asks.
“I guess,” I grudgingly respond. Really, this is me? Really?
In 2012 METAvivor launched it’s “Elephant in the Pink Room” campaign to highlight that despite pervasive awareness of breast cancer thanks to both legitimate awareness campaigns and “Pinktober” marketing, what we still try to ignore is the reality of getting, living with and dying from metastatic breast cancer.
This morning I discovered that the campaign was essentially stolen by Kohl’s Department Stores to “fundraise” for Susan G. Komen and I am truly outraged! (Find the Kohl’s Cares campaign here.) First and foremost, it is disgusting that Kohl’s would impinge on a small non-profit organization’s pre-existing campaign in such a blatant and unethical manner, and do so to sell more products (like their “pink elephant” necklace) and direct “charitable” dollars to another, behemoth of an organization.
We’re familiar already with the term SCANXIETY – the persistent anxiety that surrounds PET, CT, Bone, MRI and whatever other scans they can throw at us. It pertains to the test itself, and to the wait — the hours or days it takes to get our results. But as I await the shipment of my new meds from the speciality pharmacy, I think we need coin a new phrase, TRANGST, perhaps? The angst that surrounds the change to any new treatment protocol, with it’s unknown side effect and unknown impact.
And that is where I sit today…
Last week saw yet another CT scan and, unfortunately, some progression: albeit slowly, my cancer is growing again. And so I am now looking at my third-line treatment. I must admit, its all a little surreal. I was going to be that girl who got years on each successive therapy, denying to odds and beating down the doors of a ripe old age. Strike that – I AM going to be that girl, just not the way I planned.