Month: September 2015

How Komen Must Change to Get My Support, Part 1

Posted on by Beth Caldwell

Here I go, you guys. It’s time I explained in detail what’s wrong with Susan G Komen For The Cure, and what they’d need to do differently to get me to support them. This will be a series of posts, because I want to write comprehensively about each issue I’m raising. I’m ready for the angry responses from Komen supports, and from metsters who think I don’t go far enough. And I hope I’ll see responses from anyone who sees errors in the facts–I pledge to change anything that people find a documented source that contradicts what I’ve written. Alrighty, let’s get started: today’s post is about the Komen-driven narrative that trivializes breast cancer.

I’ve said many times that the narrative of our existing breast cancer awareness treats a breast cancer like a sorority. The hazing is treatment, and once that’s done, you get to join the sorority and attend its parties that feature pink feather boas and dance music and dogs wearing bras, and your life goes back to being just as awesome as it was before cancer, or maybe even better, because now you’re in the sorority. And no breast cancer organization has done more to promote this narrative than Komen. Just look at their marketing materials and their Twitter and Facebook feeds. 

A problem with this narrative is that it excludes many people who get breast cancer. For starters, there’s men. Yes, men get breast cancer–not as often as women, but they do, and they die from it just like we do. It’s extremely rare to see men with breast cancer in any Komen materials. In addition, until very recently, metastatic breast cancer, which is what killed Susan Komen, was only minimally included in Komen’s materials. I acknowledge that they have made some strides in this area over the past year–kudos to them for featuring my friend Mandi Hudson of Darn Good Lemonade, for example–and yet, the metastatic experience is still too often drowned out by the sea of sorority party photos. Women and men with metastatic disease stay in treatment/hazing for their entire lives, which are most often tragically too short; we don’t get to join the sorority party.

And even for those women whose cancer treatment DOES match with the no-recurrence narrative, the picture of everything being awesome once treatment is over may not be their experience at all. Take my friend Natasha from Strings of Clarity, for example. She had Stage I cancer, so she should be living the pink dream now, right? Wrong. She’s dealing with serious psychological and emotional effects from her treatment and from the experience of facing her own mortality at age 37. The “you just get over it and move on” thing is the exact opposite of her experience, and she’s not the only one.

Which brings up another difficulty with the Komen narrative: that breast cancer is about sexy fun, which is obviousy false. There’s nothing sexy about having a breast cut off, and there’s nothing fun about chemotherapy. Ignoring the reality of cancer treatment and the physical and psychological damage it leaves in its wake does not help people with breast cancer. And hiding that reality behind pink bras trivializes it. The narrative has led many to believe that breast cancer is an easy cancer, one that nobody dies of anymore, one that doesn’t come with lasting scars. The sense that breast cancer is no big deal harms people with breast cancer because it allows vital resources to spent on pink parties instead of on desperately needed research into better treatments.

I have a lot more to say about Komen and that desperately needed research, but for now I’m going to pause this conversation here. I welcome your thoughts on the issue of the narrative of trivialization in the comments.

All In The Family

Posted on by Beth Caldwell

Guess what, you guys? My mom got diagnosed with breast cancer. No, that’s not some kind of sick joke. I know I have a dark sense of humor, but not that dark. Although apparently the universe’s sense of humor IS that dark. Remember how I had genetic testing done and I was negative for ALL the gazillion genetic mutations linked to cancer that they tested me for? Uh huh. We’re actually just that unlucky in my family, and cancer is just that big of an asshole. You can’t even make this shit up.

So far, her cancer looks to be stage 2, no lymph involvement. Notice I didn’t say “only stage 2.” Because ALL CANCER FUCKING SUCKS. It’s not like chemo is less horrible when your tumor is smaller. I will say, though, that as someone whose mother died of metastatic melanoma, and whose daughter will die of metastatic breast cancer, and whose brother died of bladder cancer, I mean, you can imagine how freaked out my mom is, and my dad, and me, and my sister, and her sister. We all know what cancer looks like: it looks Not Good.

Still, one of the few silver linings to having a daughter who’s got terminal cancer…shit, I can’t even pretend like this is a silver lining, that’s absurd. One of the “well, at least this tiny part of it is marginally less awful” things about getting cancer when your daughter already has terminal cancer is that your daughter knows exactly what to do, and who to call. Which is why I’d like to take a moment now to write about my oncologist, and his staff. You guys, I’ve talked about him before and said how awesome he is, and if you follow me on Twitter, you’ll see me using the hashtag #bestdocever when I talk about him. All that praise is probably embarassing to him, but it will pale in comparison to the bragging about him that I’m about to do. Sorry/not sorry, #bestdocever.

When my mom told me she’d found a lump and they’d done a biopsy on it, I immediately texted my oncologist (yes, we text–what, you don’t text with your oncologist? You probably don’t hang out on the weekends with yours and his wife either, do you? Yeah, that’s a shame. Cough cough #bestdocever) and told him what was up and asked if he’d squeeze her in for an appointment if the biopsy came back positive. And of course he said he would. Then he texted to ask if she ended up needing a breast surgeon, who I’d want her to see, and I told him I’d want her to see the one who did my mastectomy, because I really liked her, and he said the scheduling would be tricky (it can be hard to get initial appointments quickly with her) but he’d use his influence to make it happen.

A few days later when the biopsy results came in, I called my oncologist’s office, told them the situation, and his awesome receptionist…hold on, because seriously, that word doesn’t even begin to explain what she does. She figures out billing questions, makes sure scans get scheduled, deals with scheduling snafus–she’s a goddamn genius. Anyway, when I talked to her at 3PM, she set up an appointment for my mom the very next day. No lie. And of course, while being amazingly efficient, she was also kind on the phone. It seems like a small thing, having an appointment scheduled quickly, having someone be kind on the phone. But when you’re in the midst of a shitshow like a new cancer diagnosis, it just means SO MUCH.

So, when we saw my…I mean OUR oncologist, he explained her cancer to her just as clearly as he’d explained mine to me, took the time to answer all her questions just like he does with me, and had already emailed the surgeon I’d seen to make sure my mom could get an appointment with her within a week. He’d also sent in a referral for a breast MRI. All of this less than 24 hours after we’d set up the appointment with him, and after having spent the previous night at the hospital with another patient until almost midnight.

HASHTAG BEST. DOC. EVER. 

How am I feeling about my mom getting cancer, you ask? I’m pissed–how much ridiculous trauma can one family go through?!?!–and scared. Although I know my mom is in good hands and that her prognosis is good, I mean, how can you NOT be scared when your mom gets cancer? I also know what’s in store for her, in a way that most people who haven’t been through cancer treatment don’t, and I wouldn’t wish cancer treatment on my worst enemy, let alone my mom. It’s going to suck for her, and I don’t want her to suffer. But she will, as everyone who goes through treatment does.

Sometimes people ask me why I’m so committed to getting more research done on metastatic breast cancer, knowing that I’m not likely to live long enough to benefit from it. Well that’s easy to answer now: because I don’t want my mom to die of breast cancer. I want her cancer to be gone and never come back, and if it does come back, I want there to be better treatments than just slash/burn/poison. I want her to be there when my kids get married, and maybe research will help make that happen. It’s always been personal for me, but it’s even more personal now.

Futility

Posted on by Beth Caldwell

I’ve been struggling to put on my brave face lately. Partly it’s the fatigue, which has gotten worse with every chemo cycle. I’m now on my fifth round of carboplatin/taxol; neither of these are easy drugs to tolerate, and together, they’re a kick in the gut. When I’m tired, I’m more emotional. It’s just harder to plow through this shitty existence with a smile on my face when I don’t have any energy.

But it’s not just that. I had another brain MRI a few weeks back, and there were three more spots on it. Too tiny to say for sure that they’re more mets, but that’s what I’m expecting the follow-up MRI will show early next month. Which means more gamma knife surgery, more chemo, more treatment. When I got the news about the MRI, I got drunk, and I emailed my oncologist and said “It all just feels so fucking futile.”

I think there is still a part of me, buried deep down, that hopes that I’ll live long enough for a cure to be found, or at least, for some treatment to come along that will make metastatic breast cancer truly chronic. Because, if I could stay alive that long, then all this suffering I’m doing wouldn’t be futile. It’d be a means to an end: staying alive long enough for a better treatment to come along. One that adds more than few months to my lifespan, and one that doesn’t come with the cost of spending days on end lying in bed because I’m too tired to do anything.

But then I have yet another scan that shows yet more progression, and it’s like that tiny little bit of hope gets punched in the gut, and it hurts. It really fucking hurts. And I wish it wasn’t there anymore. I wish I could just accept that this is my fate: to keep being tortured for another year, maybe two, and then to die. Maybe if that little bit of hope wasn’t still in there, it wouldn’t hurt so much every time I see more dots growing on my brain.

But that is the reality of how I’m living with my disease: to live with that tiny bit of hope, to never fully accept that this is all there is for me, and to keep getting punched in the gut over and over again as death inches closer. It’s not just the treatments that are brutal and exhausting. 

Luckily this is my last cycle of carbo/taxol for a while. After this, we’re switching to Xeloda, which is milder and hopefully won’t bottom me out so badly. I really hope so, because when I’m not so tired, hopefully I’ll be better able to pick up the pieces emotionally and keep pushing through this shitty thing I call a life. Because there’s another scan to face in a couple of weeks, and I need to brace myself for another punch in the gut.

Why Awareness is Stupid and Practically Pointless

Posted on by Beth Caldwell

October is coming. I hope it’ll be better this year with the big die-in on October 13, but it’s still gonna be a shitshow. I’ve been thinking a lot about why it drives me, personally, so insane, and I’ve come to a realization: it’s that awareness is stupid and practically pointless. Let me explain.

I feel like there’s a big difference between awareness campaigns and education campaigns. Education campains don’t just try to tell you some information; they also try to get you to do something. In the world of breast cancer, that includes getting people to go for routine breast cancer screening, ask their doctor about their breast density, and become familiar with their breasts so they notice when their breasts show symptoms of breast cancer. In short, there’s an ask explicit with education–it gives information that hopefully will lead people to take action.

Awareness, on the other hand, has no ask. It says, “Be aware that breast cancer exists!” It includes images of dogs wearing bras and pink ribbons on fireworks, because it’s not about educating people. It’s simply about making them aware that breast cancer is a thing. If all you want to do is to say “Hey you, there is a thing and it is called breast cancer” then yes, awareness is the right tool. But why in the fuck would you want to do that? What is the point of making sure people know that breast cancer exists? What does knowing it exists accomplish?

I can only think of one thing it accomplishes: some of it brings in money for breast cancer charities–but not all of it, because some of that awareness isn’t even related to charitable fundraising. Now, if all the money that awareness generates was being spent on education or patient support or research, then OK, I guess I’d feel OK about that. And there are many charities that are doing that, and I encourage you to donate to them. Unfortunately, there are too many (cough cough Komen cough cough) who aren’t. They’re spending it on more awareness. Which brings them more money, to be spent on more awareness.

This is why October drives me crazy: because all that awareness could be replaced with education, and then we’d really be getting somewhere. There are still too many people not getting the screening appropriate to their risk of breast cancer. There are still too many people who need to know what inflammatory breast cancer looks like. Imagine if awareness was converted from something stupid and practically pointless into something that actually DOES something. Wouldn’t that be so much better? Waste makes ne nuts. It just does. And seeing all these resources spent on awareness makes me want to stab a pen in my eye.

So, how about if we, as the breast cancer community, change the conversation from one of stupid and practically pointless awareness, to one of education? And maybe, just maybe, we can change the story for actual people with breast cancer.

Don’t you worry your pretty little head

Posted on by Beth Caldwell

I’m not gonna lie, I just drank some bourbon and I’m already wound up with the onslaught of pink when it isn’t even goddamn Labor Day (I am so sorry, childhood and gynecological cancer peeps, it sucks that Pinktober is eating your awareness month). So maybe this will be even more rangy than my usual feminist breast cancer rant, but I’m not even remotely sorry about that.

I am so fucking sick of the pink awareness machine convincing everyone, especially early stagers, that breast cancer is cured when treatment for early stage disease ends. We don’t know how many people who have early stage disease will later develop metastatic disease, but it may be as many as 36% within 12 years of ending treatment. However many it is, it’s TOO FUCKING MANY. And too many women who have early stage disease think they’re cured, when they are still at risk of developing metastatic disease. 

Why does this happen? I personally think it’s partly a gender issue, and partly a marketing issue. Let’s delve into the gender issue first.

It’s been a thing since time immemorial to treat women like they’re too fragile or stupid or incompetent or whatever to be handle the truth. We’re delicate flowers, you know, so if you tell us that something scary might happen, we’ll probably have some hysterical (did you know that word has the same root as hysterectomy? Because doctors thought our uteruses made us cray-cray) reaction and never recover. So the solution was, just don’t tell women what’s happening to them. 

What. The. Fuck. I mean, WHAT IN THE ACTUAL FUCK, amiright? Except we still do that now. We don’t tell early stagers that their cancer might metastasize because we don’t want to scare them. Why don’t we want to scare them? Is it because we worry their poor little female brains can’t handle it and they’ll start running through the streets screaming and pulling out our hair? For the love of pete, could you all please just stop infantalizing us for five minutes? Women have a right to know what can happen to their bodies. We are not pussies. We’re strong and powerful and we handle horrible shit all the fucking time.

Then there’s the’s the marketing thing. Take a look at practically any marketing for any cancer center, cancer charity, or cancer anything, and you’ll see it’s about selling hope. Hope for life, hope for a cure, hope for never having cancer come back. How can you convince people to hire a doctor or donate money if there’s no hope that they’ll be cured? I mean, if the marketing said “We’ll do our best but 1 in 4 of you will develop terminal breast cancer anyway” they’d never convince anybody to part with their hard-earned dollars, now would they? The truth can be mighty inconvenient, so it’s easier to just focus on hope.

The thing is, though, if women don’t know that their cancer could recur, they don’t know what signs to look out for. They don’t know that unexplained bone pain is something they should mention to their doctors, because it might be bone mets. They don’t know that that headache they just can’t shake should result in an MRI. They don’t know that the tamoxifen they’re on is really fucking important and if they stop taking it, they may be risking their lives. Because nobody told them the risks, because nobody wants them to worry their pretty little heads.

This shit is fucked up. Patients have a right to know that their cancer could come back, that it could become life-threatening. We should respect them enough to trust that they can manage their fears in the face of the facts. We should treat them as adults and tell them the truth.