Sh*t Girls Say to Girls with Breast Cancer

March 2, 2012

This? Is the Kind of Thing That Drives Me Batty (by Judy)

September 21, 2011

OK, now that we’re done laughing uproariously from the wordplay on the shirt, let’s just not buy it.

No, really. Let’s not.

According to the blurb on the site:

Our Personalized Breast Cancer Awareness Black T-shirt is a great way to support the fight against Breast Cancer.

My response?

No, no it’s really NOT.

Squeeze a boob, save the ta-tas. NO. Sorry to be a pill with this stuff, but I would gather that many of us who have in fact lost boob(s) or ta-ta(s) don’t find these t-shirts funny, nor do we think they actually help the fight against breast cancer.

I mean, really! Where on that site does it say that they donate any money to a breast cancer research foundation? It doesn’t. So my assumption is that this “fight against breast cancer” takes place on people’s chests which is ineffective at best and offensive to some of us at worst.

As Ginny Mason, Executive Director of an organization that I DO suggest you give your money to, The Inflammatory Breast Cancer Research Foundation, said in a comment to a post of mine on Facebook:

Most “pink stuff” is marketing only….perhaps a little money is donated to bc causes but the company gets the tax write-off then. If you want to make a difference, find a bc organization you think is doing good work, support them personally and get the tax write-off yourself! If you need a pink broom, pink mixer, etc. get some spray paint!!

Good advice, very good advice.

*sigh*, I have a feeling it’s going to be a very long October.
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Cross-posted to Just Enjoy Him.


what it comes down to . . . , by Judy

October 15, 2010

as far as Pinktober. I wrote this in a comment to a discussion on a Facebook friend’s post, and thought I would include it here as well. I’ve edited it and added a few things:

Some breast cancer survivors really like Pinktober, get into the pink ribbons, etc. Me? — not so much. Maybe it’s because I’m Stage IV, maybe it’s because I have Inflammatory Breast Cancer (IBC) . . . For probably many reasons, I’m not fond of Pinktober. I think Tracy Clark-Flory’s Salon piece is brilliant.

However, I do know that people on FB — those who are making their profile pictures pink, the purse thing, etc. — are incredibly well-meaning. When I can try to take myself and my enormous emotions about having IBC out of it, I DO know that peeps generally mean very well. I may need to be reminded of it from time to time because, well, having this tends to make me very cranky from time to time.

Companies that profit off of Pinktober, though? — they’re a whole different story, and I really DO resent ANY company profiting off of ANY illness like some do. This is a deadly disease, not something to make a buck off of. There are some good companies, some good campaigns. I highly recommend that everyone read what the very informative website Think Before You Pink says about how to evaluate what campaigns are good, which aren’t (or are ineffective), and which are just plain bad. I used to “click every day for breast cancer” myself, but since I read TBYP’s website, I realized that free mammograms are already offered to low income women, and I learned just how many clicks it takes to get ONE mammogram:

Tens of thousands of clicks are needed for one mammogram. Literally.

Source: Breast Cancer Action

I’ve just checked Pink Ribbons, Inc. out of the library and am interested in what it says about Pinktober. I think I’ll learn a lot.
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Cross-posted to Just Enjoy Him.


letter of the day!

October 7, 2010

Yesterday, CBC Radio’s Q featured an interview with Samantha King, author of Pink Ribbons Inc.

At the end of the interview, listeners asked the following questions (they were also posted to the Q blog): What are your impressions of cancer fundraising and awareness efforts? Are they working? Do you find any aspect of them troubling?

My sister-in-law, B. alerted me to the interview (she listens on the east coast schedule) and encouraged me to write a letter in response. This morning, a slightly edited version of this letter was read on the air (I was the “Letter of the Day”):

In January 2006, when I was 38 years old an the mother of two young children, I was diagnosed with very aggressive breast cancer. I underwent a brutal treatment regimen only to learn in November of that same year that the cancer had spread to my liver. I was told that I had “years, not decades” to live.

I resumed treatment and, this time, my response was immediate and dramatic – by June 2007, there was no longer any sign of cancer in my body. As I write this, I am still in remission. I’m also still in treatment, as we don’t know enough about what happens when metastatic breast cancer disappears to make an informed decision about stopping.

I know without a doubt that I am alive today because of the kind of cutting edge research funded by breast cancer organizations. I also know that thousands of women who’ve been through breast cancer live better lives because of the kind of advocacy and outreach work that is undertaken by non-profit organizations.
But I do cringe, seethe and yes, even rant every time October comes around and we are deluged with pink products from fried chicken to face cream to key chains.
In theory, I’m not opposed to corporate sponsorship. But in the same way that I think cigarette companies should not be permitted to sponsor children’s festivals, I’m offended when companies that sell products that are unhealthy, bad for the environment and laden with carcinogens jump on the “pinxploitation” bandwagon. At best, these campaigns do little to eradicate breast cancer and worst, they are a cynical attempt to grab some good PR and increase profit margins at the expense of anyone who’s life has been affected by cancer.
Don’t get me wrong. I don’t judge anyone who’s drawn to all the pink stuff. I own a lovely pink cowboy hat. I would just ask folks to think before they get swept up in the “Pinktober” frenzy. Put that pink soup back on the shelf. Step away from the pink sweater with the pink ribbon buttons (for so many reasons). Unless you really want the pink sunglasses, save your money. Most companies only give a tiny percentage of sales to breast cancer research. Why not make a donation instead to an organization that is demonstrably contributing to research, advocacy and especially prevention of all cancers? Then you’ll know that you really are making a difference.
All the letters that the host, Jian Ghomeshi, read were on this subject and all of them opposed pinkwashing. Perhaps tomorrow will bring a deluge of letters taking an opposing opinion but it’s good to see that more of us are speaking out on this issue that has driven me wild since my own diagnosis of breast cancer.
Cross-posted from Not Just About Cancer.

Answering “How ARE you?”

September 7, 2010

When I was first diagnosed with cancer‚ everyone asked me‚ “How are you?” As if troops were gathering to wage battle against my fear and loneliness‚ “How are you?” became a comforting codeword for “I’m on your side.”

But within a few weeks‚ the chemotherapy began to take its toll‚ the shock and novelty of being a patient wore off‚ and I came to dread being asked‚ “How are you?” This question undermined the distraction and healthy denial that minimized my distress.

If I answered truthfully‚ I had to absorb the hints of disappointment‚ anger‚ frustration‚ sadness‚ fear‚ and helplessness that splintered others’ words of comfort. I found myself consoling those who asked‚ and then fighting the contagion of grief and fear. Even when the news was good‚ I didn’t have the energy to include all the people who wanted updates.

After my treatments ended‚ the prickles of “How are you?” sabotaged my attempts to move on. One day I spilled my frustration to my good friend‚ Debbie‚ “People keep probing! They don’t say‚ ‘How are you?’ but ‘How ARE you?'” Debbie suggested that I was being oversensitive. “It’s just an everyday greeting. Maybe they don’t mean anything by it‚” she said gently. Not buying her argument‚ I explained how I’d answer‚ “fine‚” and they’d double-check‚ “Really?” their eyebrows raised and their chin dropped ever so slightly. I told Debbie how one of my colleagues came over and asked the usual. Despite my enthusiastic‚ unequivocally positive response (“GREAT!”)‚ he then asked‚ “Are you still in remission?” “No‚ it was not my imagination. People weren’t simply saying “hi‚” they were asking for my latest scan results.

No matter how it was intended‚ being asked‚ “How are you?” rattled my heightened sense of vulnerability by virtue of its literal meaning and my sense of not knowing how I was. My desire to be polite often battled rising confusion and panic as I thought‚ “I’ll find out when I have my check-up.” I told my friend Debbie‚ “I wish they didn’t ask.”

Debbie took their side‚ “Wendy‚ they are asking because they care about you.” She then listened patiently and tried to understand as I shared my struggle to find a “new normal” after cancer‚ one that included persistent fatigue and frequent doctor visits. I suggested she say‚ “How are things?” or “Good to see ya‚” adding‚ “Don’t walk on eggshells‚ Debbie. When‚ out of habit‚ ‘How are you?’ slips out (and it will)‚ don’t worry about it. I won’t take your question literally unless I want to.”

That offhand last comment led me to the key to surviving “How are you?” When friends ask‚ I can respond whatever way works for me‚ trusting that the person wants to “be there‚” whatever “be there” means that minute.

With my answer‚ I can share the truth about survival: Some days are good‚ some bad; sometimes I need to escape‚ sometimes I need to talk it all out‚ sometimes I need to be held‚ other times I need space‚ and I’m not always sure what I need (so they can’t know‚ either). I’m learning to recognize when “How are you?” is meant as nothing more than “hello.” Occasionally I screw up and start to give a detailed or philosophical answer to someone who really doesn’t care or doesn’t want to hear. That’s OK. And I forgive all the people who say the wrong things. I’ve said a lot of stupid things in my time. As for the rubberneckers‚ I tell them “I’m fine.”

“How are you?” is not an intrusion‚ but the glue that holds Debbie and me together. Our initial responses‚ both verbal and nonverbal‚ telegraph if one or the other has news or problems or worries to share. We know within seconds if one is in need‚ even if that need can’t be met at the time. And‚ I was mistaken when I thought that I didn’t know the answer. Although on any given day I may not know what my next scans will show‚ I do know how I am. Cancer tuned me in to my body and clarified who and what are important in life. If anything‚ after cancer is when I started to really know how I was.

“How are you?” may never again have that innocent sound because I can’t go back to the way I was before cancer. That’s good. In letting others care for me‚ I’ve learned about caring for others. Whether I’m anxiously awaiting a check-up‚ or undergoing another round of treatment‚ or enjoying a blessedly ordinary day‚ Debbie’s three little words‚ “How are you?” stir emotions because they are powered by three other little words: I love you.

[I wrote this many years ago. Ever since, I’ve had no trouble with the “How-are-you” question. This supports the idea that sharing and working through something in my head — or with someone who cares — makes a difference, even when the circumstances remain the same.]


In the name of awareness

January 8, 2010

(by Susan) If you’re on Facebook, you’ve seen the meme going around the past couple of days. Women the world over are posting colors to their status updates. Lots of black, some pink, some white, a virtual rainbow. It’s a game that several of my circles (high school, local friends, blogging friends) are playing right now, and it looked cute if harmless. I wanted to play.

I tracked the game back a couple hours and figured it out — they were writing their bra colors! I put hands to keyboard and wrote … nothing. Truth is, I didn’t know what to write. I wanted to frivilously play along — the boys had gone to bed, and this was MY time, after all — but I couldn’t. And why couldn’t I? If you know me, you don’t have to ask. But if you’re new here, I couldn’t play along by posting the color of my bra because I don’t have one. I don’t own one.

Two years ago this month, I underwent surgery, you see. I had a double mastectomy to remove the cancer that was trying to kill me. In my right breast, Stage III inflammatory breast cancer, a fast-moving, deadly cancer that kills more than 60% of women in the first five years. (Statistics have improved somewhat since my diagnosis, but it’s still the second-deadliest cancer, second only to prostate cancer.) In my left breast, potential. Potential that the same cancer would recur, as it was in my lymph system, coursing through my body, even as we tried to kill it with six months of tri-weekly, then weekly chemotherapy.

We had been through hell. First the cancer, then the chemo tried to kill me, and both of them almost succeeded. I was in bed for months, too tired to move. I couldn’t leave the house for fear of infection during flu season — and we had to take my oldest out of preschool, to keep those germs at bay. At one point, the taxol had ravaged my nervous system so much that I lost the use of my legs.

After all that, we had to wait for my body to rally after the last chemotherapy treatment and become strong enough to survive the surgery. As each day went by, I would grow stronger — but so would the cancer. and if it grew faster than my white blood cells rebounded, then the surgery might not happen, and the tumor would be inoperable again.

It was terrible.

But eventually the day came, January 23, 2007, and I was able to have my breasts removed. I’ve never felt so relieved in all my life. This was my one big shot at getting rid of (most of) the cancer in my body, and starting life anew. This was it. This HAD to work.

And it did. I made it through surgery just fine (twittering when I woke up, and blogging about it the same day). I went through the gory aftermath of breast removal, and the difficulty of explaining it to my children. We found out that the second breast was not innocent at all, but fostering its own little type of cancer, Paget’s disease. If I had not removed it preventatively, I could have been back in chemo within the year — if it were found in time.

So I have some history here.

But I tried to shrug it off and play along. I wrote “None — In fact, I don’t even OWN one! :-)” and watched my friends play along in their own way, hoping I didn’t make anyone uncomfortable.

But what I saw was nothing short of amazing. I’d forgotten for an instant that this wasn’t about my story. This was about our story, and the Mothers With Cancer were coming out to play too. Here’s what they wrote:

“Nude.”

“Nothing.”

“White, with pockets.”

And then, in the comments, some amazing things began to happen. Their friends came out to support them, cheering them on. Friends engaged me on FB and twitter too, talking about it, asking why I felt left out, and letting me know that the whole meme was staged by some women in the midwest urging awareness of breast cancer.

Really?

Awareness?

Aren’t we aware by now, people? Don’t we know that we need to understand our own bodies, take notice of changes in one breast but not the other, and call the doctor when we see that something’s changed? Don’t we know that we need to talk to our doctor about thermography or mammograms? Don’t we know?

As I talked to friends on twitter about it last night, a single message came through from my friend and fellow survivor @stales. She said something that struck me to the core. She wrote to all: “Time for a little less “awareness” and a whole lot of “action”: the time to act is now: address the causes!” She’s smart, that @stales.

Other cancer survivors joined in, telling me that they felt left out too. After all, this was ostensibly an effort to raise awareness of breast cancer — but one in which breast cancer survivors themselves could not participate, and were reminded (as if we needed a reminder) that we didn’t need bras anymore, that most basic undergarment of women everywhere, that symbol of sexuality, for the simple reason that we had already sacrificed our breasts in a hail mary attempt to keep the rest of our bodies from dying of cancer.

That’s what it is, you know. It’s not a choice. It’s not just another treatment option. Women have mastectomies, double mastectomies, reconstruction (or not) because we have no other choice remaining that will give us a shot at life — life with our children, our partners, our families, and our friends. And so we tearfully bid our breasts goodbye. We submit to surgery, weeks of the aftermath, drains and gashes where our breasts once were. We submit to doctors and nurses and students gawking with surprise when we disrobe for exams (not the oncologists, of course, but we still need regular checkups like everyone else, you know). We submit to months of physical therapy to rip the scar tissue off the muscles that stretch to cover our ribcage. We submit to lymphedema therapy, taking up precious time, time that we fought for, time that we sacrificed for, but time that nonetheless much be used for even more medical treatment, to deal with the aftermath.

And then we go shopping.

Clothes that fit just a few months previously don’t fit anymore, you see. Every. single. shirt. is stretched out over the chest, and most new ones don’t fit right either. Princess seams, sewn to flatter the big-busted and small-busted alike only serve to remind us, the no-busted, that we are no longer princesses. V-necks are flattering, but only if they are not too deep, cut to show no cleavage, as our cleavage has been taken from us as well.

And, for a while, the reminders are everywhere. Every TV commercial with the Victoria’s Secret angels rankles. Every low-cut shirt sparks the tears. Every nightgown cut to flatter falls — flat — and we cry into our pillow.

We are aware, you see. We are all too aware, and we work to escape the reminders. Our friends dance around us for a while. They don’t invite us to the pool (have you ever gone swimsuit shopping without your breasts?). They are gentle, and careful, and form a wall of support around you.

But eventually, life moves on, and the wounds scab over, and the scars begin to form.

Until one day, one day, when a harmless meme rips them off, and you realize once again that you will never be the same.

Cross posted at Toddler Planet. If this interests you, check out the comments over there. Quite a variety!


the opposite problem

November 26, 2008

I know several women who discovered they had breast cancer much later than they ought to have, because they were refused access to screening, their doctors dismissed their concerns or their breasts were so dense that tumours were not easily detectable by ultrasound or mammogram.

And then, today I read in the Globe and Mail that a new study coming out of Norway, revealed that some cancers will disappear on their own and that more sophisticated testing, such as the MRI, can lead to “overdiagnosis”:

The study, published yesterday in the journal Archives of Internal Medicine, suggested breast-cancer screening may be leading to overdiagnosis, with about 22 per cent of cases likely to resolve themselves without treatment.

Once a breast cancer is found, however, it would currently be considered unethical not to treat it. So – if the theory is correct – large numbers of women may be having surgery, radiation, chemotherapy and other treatments that would never have been needed if their cancers had not been detected.

[]Radiation can damage the heart and coronary arteries. A previous randomized controlled trial showed that about one in 10 women who receive radiation for breast cancer will die from heart damage attributable to the treatment, he said.

In a telephone interview from Oslo, Dr. Zahl said that if he and his co-authors are correct, two women die from complications of breast-cancer treatment for every woman saved by screening.

“And that’s a very bad tradeoff.”

The study’s authors argue that, since it is considered unethical to treat cancer once it has been detected, more aggressive detection can lead to unnecessary treatment that may cause more harm than good.

I was feeling a little uneasy when I read this article and trying to articulate why, when I read a response from Dr. Amy Tuteur (thanks to Jenny for the link). Her last paragraph was the clincher for me:

Finally, and most importantly, there is no way to tell the difference on mammography, or by any other technique, between the cancers that will disappear and the ones that will go on and kill the woman. Without a practical way to separate those who need to be treated from those who do not, the finding is intriguing and worthy of further investigation, but cannot guide us in determining the best way to screen for breast cancer and the best way to treat it.

It’s hard, when reading this stuff, not to consider my own situation. My breast cancer was diagnosed after I found the big, hard lump in my right breast. The kind of cancer I have is aggressive, and by the time we found it, fairly advanced. If I had had an MRI and my tumour had been discovered before the cancer had spread to my lymph nodes, the chance of metastasis could have been much lower.

How would doctors know which cancers to ignore and which to treat?

Until we have the answers to those questions, this study seems to me to be meaningless.

And I hope it doesn’t used as a reason to deny tests to women who are high risk or who suspect they might have breast cancer.

Cross-posted to Not Just About Cancer.