Being an Ally

Posted on by Beth Caldwell

This year during Black History Month, my son’s school, which is very white and very affluent, met with students from a high school in a poor neighborhood where people of color are the majority. They talked about what’s going on in their neighborhood, and how they needed help advocating for the school district to provide bus passes for all students at the school. They need the bus passes because it isn’t safe for kids to walk to school in their neighborhood, because there’s so much crime. Our school stood with the high school students at the school board meeting, to show that we were behind them and we care about their community.

Our students learned what being an ally is–it’s not about being part of the community that needs help, but about standing with them and using our privilege to help them. An ally is someone who not just cares about a community in need, but also does something to support them. And what that something is, is what the community says it needs, not what allies think that community needs. So, being an ally requires listening to the community and then asking “How can I help?” 

There’s been a division in the breast cancer world between early stage patients, and metastatic patients. Recently we had a #bccww chat where we talked openly about why this is happening. My theory is this: historically, metastatic patients have felt excluded from the larger breast cancer narrative about “beating” cancer and then celebrating with pink feather boas and “survivor” events. Metastatic patients don’t beat cancer, and we don’t survive cancer–we die of or with it, and mostly of it. 

For a long time, metastatic patients were mostly silent about it. It’s hard to speak out when you’re the only one in your community with metastatic breast cancer, and until the birth of social media, we often felt very isolated. But social media has been a game changer. We can now connect across geographic boundaries, and we don’t feel so alone–and so we’ve begun to speak out about how the early stage-focused narrative of breast cancer excludes us. And we’ve begun demanding that the breast cancer world include us and hear our voices. 

That’s triggered a backlash from some early stage patients who believe in the early stage narrative. Like Joan Lunden, they say we’re too bitter and angry and that we should follow the dominant narrative about staying positive–as if being honest about the reality of treatment only ending when we die is us just being “too negative.” And sometimes people in the mets community say things that belittle the experience of early stage patients, as though having early stage disease is no big deal. As if we’re not all experiencing something traumatic in having breast cancer, at any stage. Our traumas are just a little different–ours is ongoing trauma, and early stage patients’ is past trauma that has a continuing impact.

This division between early stage and metastatic breast cancer patients is a serious problem. We need to begin to build trust and understanding between us, because we in the metastatic need allies in the early stage cancer community. We need allies who see we’re in need and then do something to help us. 

I think it’s vital that early stage patients open their hearts and learn what life is like for metastatic patients. Too often our voices are still ignored, as are our pleas for help to the wider breast cancer community. Our needs aren’t part of the breast cancer advocacy that the National Breast Cancer Coalition pushes. While prevention is a noble goal, it ignores those of us who are already living with metastatic cancer and need help now, before we die. And when we bring it up, too often we’re silenced. Listening to us a necessary first step for early stage advocates to be an ally to our community. 

And that something is helping us advocate for research dollars to flow to better treatments for metastatic cancers. 90% of cancer deaths happen because of metastasis and yet very little of the research dollars flow to metastatis research. In breast cancer, it’s only 7%–and virtually all deaths from breast cancer are from metastatic breast cancer. I know some folks like Susan Love have questioned that figure, but if you look at how MBCA conducted its research–literally going through every grant to see what it area of research it was funding–you’ll see that this is a solid figure. And an alarming one. 

And, I hope people with early stage cancer will understand that we need allies because we’re dying. It’s not easy to be an activist when your ongoing chemotherapy leaves you too tired to get out of bed. It’s not easy to get the ear of people in power when you can’t afford to travel because you can’t work anymore. It’s not easy to demand change when you’re dead. The privilege of surviving cancer is something we in the metastatic community don’t have, and we really hope that early stage patients will use that privilege, their staying alive, to help us who cannot stay alive. We literally can’t do this alone–we need allies, who listen, and then ask “How can I help?” 

Hand and Foot: SO GROSS

Posted on by Beth Caldwell

Time for an update on how treatment is going: I’m dealing with some side effects of Xeloda. My fatigue is still real. That blood didn’t do much for my energy–I’m no longer anemic, but still fatigued. We went out to the coast and I was too tired to go for a walk with the family. I walked up the stairs of our beach house to get my coat, came back downstairs, and was like “Nope, that was all the energy I had.” I didn’t even get to see the beach while we were there, because I literally didn’t have the energy. Sigh.

Fatigue sucks, but it’s not my only side effect of Xeloda. I’ve also developed what is known as Hand-Foot Syndrome. Hand-Foot isn’t talked about much outside of cancer land, so a lot of folks who don’t have cancer aren’t familiar with it, so let me explain how it works. You take Xeloda, and after you’ve been on it a bit, you start developing changes in the skin on the palms of your hand and the soles of your feet. At first, I got weird brown spots on the palms of my hands, like really big freckles, and then the skin started to get really dry.

Then, when I went to Disneyland in January, I wore sensible shoes the whole time but still developed enormous blisters. They healed, but now the skin around my nails on my fingers and all along the bottom of my feet have become really peely. Like, every time I take a shower, my skin starts to slough off as soon as I get out of the shower. It’s alarmingly gross, like, seriously just disgusting amounts of dead skin just falling off.

And then a couple weekends back I started to get some neuropathy in both my hands and my feet. Neuropathy is like a numbing/pins and needs feeling, like your hands or feet fell asleep. Add that to the truly debilitating fatigue I’ve been having (it’s really hard to be an effective parent when you can’t get out of bed) and it was clear my Hand-Foot was getting worse.

#bestdocever had warned me of all this when I started on Xeloda, and recommended I use a cream with urea on my hands and feet, because there have been studies showing urea helps with the dry and peeling skin. So The Hubs bought me some Udderly Smooth (the container looks like a cow, and we call it “Mom’s Cow Lotion”), which I was using obsessively, and yet, the peeling continued. So I asked some friends who’ve been on Xeloda about what they used, and they recommended a cream called Revitaderm. It’s a whopping 40% urea. 

I put it on my hands and the dry dead skin started just sloughing off, like, immediately, like, the act of rubbing the lotion into my skin resulted in all this dead skin peeling off. Same with my feet. The skin underneath seems healthier and less peely, but holy hell, it’s really disgusting watching all that dead skin fall off. I keep joking about having leprosy. 

But the cream doesn’t help with the neuropathy, so I met with #bestdocever last week and we decided I should take an extra week off Xeloda (I am on a 2 weeks on, 1 week off schedule) and drop my dose. I had started on 8 pills a day, dropped to 7 in February, so now we’ll drop me to 6. That’s still a shitload of Xeloda, so I’m expecting my fatigue to continue, but I’m hopeful that the Hand-Foot will subside a bit. On this extra week off, the neuropathy has subsided, so that’s something. If it got worse and I couldn’t type, I’d lose my mind.

The thing with having terminal cancer is that nobody in their right mind would take a drug that keeps them in bed all day and makes their skin fall off–except that we know the alternative is, we die. This is why the experience of metastatic patients is so different than the experience of early stage patients. I don’t mean to minimize the experience of early stage patients because all cancer treatment is shitty and it leaves lifelong impacts, both physical and emotional. But for early stage patients, treatment ends. For us, treatment only ends when we die–and so we put up with pretty awful treatments, because the alternative is death. Xeloda is one of the gentlest chemotherapy available, and my side effects from here on out will only get worse. 

This is why I’m so passionate about research. I don’t want to live like this. I want to have energy, and I want my skin not to fall off, and I want my metster friends to not have diarrhea and need adult diapers. The only way to improve the quality of life of metastatic patients, and the only way for us to turn our disease from terminal to chronic, is to research new treatments for metastatic cancers. I know that scientists can help us live better, if only we’ll support their work.

Tired

Posted on by Beth Caldwell

So I’ve been exhausted all this week, like, lay in bed all day tired. So I finally texted #bestdocever and said “Seriously I’m so fucking tired.” (Yep, we text, and we swear. Reason #583 why he’s #bestdocever.) Turns out my hematocrit is 25.9 today, which explains the fatigue, and I’m having a transfusion tomorrow.

When I’m this fatigued, my feelings tend to wash over me in ways they don’t when I’m feeling well. A friend told me today that leaning into it when it washes over you is a good idea, and that’s really good advice, so here I am, writing this post, hoping that processing will make me feel better. Here is what I’m feeling right now.

I hate that I can’t do stuff for my family, like a simple chore like doing the dishes, because I’m too tired. I hate that when I do try to do a simple chore, I feel winded like I’ve just run a marathon. I hate that I smell terrible because once again I was too tired to take a shower–and I hate that after a shower, I need to lay back down because I’m exhausted from the effort of taking a simple shower.

And even more so than any of that, I hate how I feel emotionally when I’m so tired. I find myself hating the life I’m living. Last week I had my regularly scheduled brain MRI, and I wasn’t even that nervous about the results, because I knew my tumor markers were still dropping and I knew it would probably be fine (and it was)–but I hated having to go have another scan, another IV, another day when I was tired and yet had to drag myself out of bed, out of the house, to lay in machine for another half an hour. 

It washes over me how this is my life, this is going to be my life for the rest of my life, there will never be a time when I’m not getting scanned and poked at least every 3 months. This will go on for the rest of my life. I will always be living this half life, desperately trying to stay alive, not able to participate fully in the world, knowing all of this, all the treatment, will be futile someday.

I know I’ll feel better after the transfusion I’m having tomorrow, and that it’s really hard to live with the ongoing trauma of living with metastastic cancer, and it’s even harder when I’m physically down. I’m not into woo woo stuff about mind-body connections, but the reality is that when I’m physically weak, I have a lot more trouble being emotionally strong. Which is why it’s really just a rough time when I’m this fatigued.

I found myself apologizing to some friends for being pretty absent lately, and one of them said, “Don’t ever apologize to us again.” And when I heard that, I burst into tears, in a good way this time. I need to remind myself that my friends don’t expect me to be Superwoman. They know this shit is HARD and they’re OK with me not being that cancer patient who’s standing on top of a mountain being like “I refuse to let this slow me down.” That it’s perfect OK with them, and they’re not disappointed at all, when I can’t be that person. It’s a relief to know I’m not letting them down. 

The Hubs says the same thing, too, when I tell him how useless I feel. He points out that I DO contribute to the family even when I’m feeling so down, and that I’m not letting him down. That he knows I’m not perfect, and he loves me anyway. All this support is so powerful, and it keeps me going when I’m at a nadir.

That’s it, I’m done now. Processing over, letting go of my guilt, and resting and hoping tomorrow brings better things. Like blood and energy and a return to my sunny disposition.

Casablanca

Posted on by Beth Caldwell

Casablanca is one of my all time favorite movies. I especially like the scene where Captain Renault has to shut down Rick’s Cafe because the Nazis tell him to, and when Rick asks him why, he says “I’m SHOCKED! SHOCKED! to find that gambling is going on in here!” And then Rick’s assistant comes out with Renault’s gambling winnings.

I thought of that scene with the recent spate of celebrity cancer deaths. So many people I know expressed shock about David Bowe and Alan Rickman dying of cancer–and I think it was partly that they kept their diagnoses a secret, but I also think there’s something else going on there. I think a lot of people have bought into an idea sold by virtually every cancer center and most cancer charities: unrealistic cancer hope. 

You’ve probably seen the ads from MD Anderson or American Cancer Society or whatever cancer treatment center is in your area. Do any of them say “We’ll do our best to treat you but cancer kills 500,000 Americans every year and you might die no matter what we do”? Of course not. I mean, who would choose a hospital that says that? Nobody, apparently. So instead, they suggest that they’ll cure you, that they’re fighters who are tougher than cancer, that if you choose them for treatment, they’ll save your life. And that’s bullshit. They’re going to do their best to save your life, but a lot of cancers are incurable. 

And it’s not just cancer centers and charities–it’s the press too. We see all these stories of hope, that show cancer warriors valiantly fighting their disease and being cured. Where are the stories of the reality of life with incurable cancers? The endless treatment, the knowledge that you will die of your disease? The watching those valiant cancer warriors have metastatic recurrences and die? These stories don’t sell papers, and so there are too few of them out there. People like a happy ending. People like fairy tales.

So, the general public–those not living with a terminal diagnosis and those who don’t love someone with a terminal diagnosis–are left with the impression that cancer is no big deal. You fight it bravely and you win. That’s the story they’ve been shown, over and over again. And when they’re faced with the reality of what cancer actually does, they’re SHOCKED! SHOCKED! to learn that cancer can and does kill people–even rich people, even famous people.

I hate to keep harping on this, but cancer is a shitshow. The treatments are still practically medieval–slash, burn, poison–and even if you take the most aggressive treatment possible, your cancer may never be cured, as mine will never be cured. This should not be shocking news given how many people die of cancer every year. That it DOES shock people is evidence that the dominant narrative is a lie.

We need to talk about race, y’all.

Posted on by Beth Caldwell

So, I’m a nerd–you guys probably understand that by now–and so I spent the flight to the cruise I took with The Hubs alternating between napping, reading The Emperor of All Maladies, and reading SEER data. SEER, for those non-nerds amongst you, is the big federal database that tells us about cancer statistics. It has a whole host of issues that make it a lot less useful than it could/should be, but one thing it tells us is how many people die of breast cancer. And it breaks that data down by race. And that data is HORRIFYING.

In 1975, the number of female deaths from breast cancer per 100,000 was about 31. (I’m really sorry, men. The SEER chart listed above just talks about women with breast cancer, once again selling short our male breast cancer friends.) In 2012 (the most recent data set we have) it was about 21. This is a good thing, and can largely be attributed, in my opinion, to HER2-targeted therapies like Herceptin. Nice work, researchers! You keep working on blockbuster drugs like that, mmmmkay? Seriously. We need you.

But here’s the problem. For white women, the rate went from 31.79 in 1975, down to 20.71 in 2012. But for black women, it went from 29.49 in 1975, to 29.43 in 2012. So, basically, if you’re a black woman in America, you’re just as likely to die of breast cancer today as you were in 1975.

WHAT IN THE ACTUAL FUCK.

What’s driving this? Is it tumor biology? Is it lack of medical care in poor black communities? Is it institutional racism that makes me, a white woman, more likely to get cutting edge care at a large cancer center? Is it that large cancer centers often don’t take insurance plans that are less expensive, and African-American women are more likely to be low-income and thus unable to afford the plans that large cancer centers accept? I don’t know, because I’m not a black woman–but what I do know is that this is not OK. I wrote about this in 2014 and I’m still upset about this today. My friends Adrienne and Reba and Toni, all black women with metastatic breast cancer, have lives just as valuable as mine. Their children love them just as much as mine love me. Their children NEED them just as much as mine need me. 

We need a national conversation about this. We need to be outraged that our African-American sisters are dying in much larger numbers than we are. And we need to ask the crucial question: how can we, as white women with breast cancer, help? 

Hanging on the side of a cliff

Posted on by Beth Caldwell

So, exciting news being NED, amiright? Exciting, but also terrifying. You see, everything in cancer land is ass backwards. For example, when your cancer gets worse, we call that “progression.” Progress would suggest improvement, right? Not with cancer. You’d also think that I’d breathe easier knowing the drug I’m on is working, right? Not so much. Let me use a metaphor to explain.

I’ve written in the past about how having metastatic breast cancer is like being shoved off a cliff. And I’ve also written about how hope is like a rope that kind people who just don’t get what metster life is is like will throw down to you and say “Here, climb this.” But the problem is, the higher you climb, the harder the fall. And you WILL fall. NED doesn’t mean cured. It means the cancer is too small to be seen on a scan. It’s still in there, trying to figure out how to overcome the drug I’m on and start growing again. 

So, basically what’s happened is, my oncologist gave me a rope, and I trust him more than I do the good hearted friends who say “be positive, have hope,” so I’ve climbed the rope. And now here I am hanging off the edge of the cliff on this rope, not fully at the top, but high enough that I can see the view from up here, and think “holy shit that’s a long way down.” 

At the top of the cliff are the researchers. And they say things like “be patient, help is coming.” But meanwhile I’m hanging here off this cliff, and frankly, my arms aren’t that strong. I don’t know how much longer I can wait. I hope those researchers realize I can’t just hang off the side of this cliff forever. Eventually I’ll fall. I don’t have 5 or 10 years to wait for a new treatment to be fully vetted. I need new things to be available when this rope snaps. Or better still, before it snaps.

So, I’m super happy I’m NED, but I’m also terrified. Because I know how slowly research is happening. It needs to move faster, not just for me, but for my friends whose ropes have already snapped. 

Bacon and bourbon cured my cancer

Posted on by Beth Caldwell

That headline is a lie, of course. My cancer will never be cured. But apparently it CAN be beaten back so much that I have NO EVIDENCE OF DISEASE!!! ALL CAPS FREAK OUT!!!

I had a PET scan on Monday with results due at an appointment with #bestdocever on Friday. Then Holley Kitchen died on Tuesday. If you missed her video that went viral, go watch it. She had such a beautiful spirit, and it gutted me when she died, leaving behind two boys, the youngest a 4 year old…just like The Girl. So, I texted #bestdocever and said “Holley Kitchen died today, her youngest is 4. Tell me that won’t be me.” And he texted back, “Naw, I have good news for you on Friday.” 

So, Friday comes around, and I go to the appointment. And we talk about my conversation with Joan Lunden, and the meeting I had the day before at The Hutch with other breast cancer advocates, and he gives me my check up and asks about my side effects from Xeloda, which at this point are fatigue (my constant companion) and looking tanned and freckled. So, pretty minimal.

Then #bestdocever says “I guess we should talk about your PET report. You know, unless you don’t want to.” And I said, “Well, you said it was good news.” And he said, “It’s OK.” And I was like, “Oh. So, just sort of good news, then.” And he said, “I’m kidding, it’s amazing.”

And we went through the report section by section, and each one said things like “metastatic lesions resolved” and “no longer any pathological FDG uptake.” In fact, my bone tumors aren’t just dead, the bones appear to be healing. And he carefully went through the liver section of the report, and said that he’d spoken in detail with the radiologist because he wanted to say I was NED, but wanted to make sure the spots on my liver really aren’t cancerous anymore. And the radiologist assured him that they weren’t. At this point the word “NED” was swimming in my brain…and as we got to the end of the report, I said, “So I’m NED?” And he said “Yep, you’re NED.”

As I was leaving, I told #bestdocever I was especially surprised about my liver because I’d been on a cruise the week before and frankly, I drank a lot, way more than usual. And he wisecracked, “Well that bourbon must be working, keep it up.” I also ate a lot of bacon. So I’m going with the theory that eating a lot of bacon and drinking a lot of bourbon will cure cancer. It’s as good a theory as black salve, drinking breast milk, or eating a lot of curry, amiright?

I honestly never thought I’d get there. #bestdocever had said at the start of this shitshow that NED was his goal for me, but I really didn’t think it would happen, especially after all that progression last spring. I’m still in shock. I knew Xeloda is a drug that people can have exceptional responses to, but I never believed I’d have THIS exceptional of a response. I feel like I’ve climbed back up the cliff a bit. It’s both thrilling and terrifying. But mostly thrilling. And it’s the first time since I was diagnosed that I’ve truly seen The Hubs happy, which makes my heart sing.

How long do I get to dance with NED? There’s no way to know. NED means my cancer is too small to see on a scan, but it doesn’t mean it’s totally gone. Someday it’ll come roaring back. But not today. Not today. Today we dance.

Peaches come in a can

Posted on by Beth Caldwell

This post is not about cancer. This is a classic Cult of Perfect Motherhood deprogramming post. It’s about my grandmother, who happened to have breast cancer, but that’s not what this story is about. It’s about peaches. Canned peaches, to be specific. 

Recently, I tweeted while having a blood transfusion that I had canned peaches with my hospital food brunch, and that they reminded me of my paternal grandmother, and then I thought, I should tell you all this story because it explains a lot about the sense of humor I’ve inherited from my family. And it also gives us a lesson that will help us all do a little deprogramming.

So, my grandmother was your typical 1950’s style housewife living in a small town in Oregon, and every year, she’d can her own peaches. She’d go get a bushel of them from the local growers, and do all the work that’s involved in canning peaches. Which is a lot of work, but since my grandfather loved them, she made them.

Then one year, my grandmother missed the peach harvest. You know, because she was busy raising four kids. So, she went down to the local grocery store and bought canned peaches, you know, like, the cheap store brand ones. And she brought them home, and she hid them in the cellar. And anytime my grandfather said, “Honey, how about some peaches with dinner” she’d say “Sure thing, I’ll go get them from the cellar.”

Then she’d go down to the cellar, open a can of peaches, dump them in a mason jar, screw the lid on, and bring them upstairs and say “Honey, can you open the lid for me, it’s so tight.” And my grandfather would open the jar, and they’d eat the peaches, and my grandfather would say, “Sweetheart, nobody cans peaches like you do, these are the best peaches ever.”

So, now my grandmother knew that her husband couldn’t tell the difference between her peaches and the cheap store brand canned peaches. So she was like “The fuck I’m gonna do all that work anymore.” (Except, she NEVER would have sworn, but you get the idea.) But, she also wasn’t going to tell my grandfather she wasn’t doing all this work and lose all the compliments about the peaches. So she just bought the peaches at the store that come in a can because they were put there by a man in a factory downtown. And she kept putting them in mason jars and fooling my grandfather. For, like, 30 years.

The only person who knew this was going on was my aunt, who was sworn to secrecy. My grandmother made my aunt promise not to tell anyone until she was dead. So, my grandmother passes away in her 80’s (not from breast cancer, from regular old age stuff) and like five minutes later, my aunt’s like “Dad, there’s something you need to know about your wife.” And she tells him about the peaches, and he thinks it’s the FUNNIEST THING EVER. Literally the next time I saw him, he was like, “OMG I have the best story about your grandmother.” (Except he didn’t say OMG, but you get the idea.)

When my grandfather died, my local BFF left a can of peaches on my doorstep, which made me smile. And every time I eat canned peaches, I think of my grandmother, and what a sassy, awesome woman she was. And I think, “What peaches thing am I doing because I think it matters to my family, but really they don’t give a shit?” What peaches thing are YOU doing right now?

An Open Letter to Mark Zuckerberg 

Posted on by Beth Caldwell

December 20, 2015

Dear Mr. Zuckerberg,

I’m writing to you to discuss the suspension the Facebook account of a member of our organization, Beth Fairchild. Beth’s account was recently suspended because she posted a picture of an areola tattoo that she performed on a woman who has been through a mastectomy with reconstruction. Beth is an important member of our organization, MET UP, whose mission is to change the landscape of metastatic cancer through direct action.

Like many of our members, myself included, Beth has metastatic breast cancer, which is breast cancer that has spread to other parts of the body, and is incurable. Everyone with metastatic breast cancer will die of or with their disease, including Beth. And yet, despite this devastating diagnosis, Beth has decided to spend the time she has left being a fierce advocate for women who have breast cancer, including using her amazing skills as a tattoo artist to help women who have been through breast reconstruction.

Many people don’t realize that breast reconstruction after a mastectomy is nothing like breast augmentation done on women without cancer. In a mastectomy, the entire breast is removed, including the nipple. In order to rebuild the breast, doctors can build a nipple with tissue, although it will never feel like the removed nipple because it no longer has any nerves in it. And after a surgeon builds a nipple, it has no areola. In order to have the nipple look like the one that was removed, a tattoo artist like Beth must tattoo an areola on/around the rebuilt nipple. In addition, some women can’t or don’t have the nipple rebuilt, and instead have a 3-D areola tattoo, like the one Beth created and shared in the photo.

Facebook has standards for determining when nipples can be shown in photos shared on your site. Your community standard states, “We also restrict some images of female breasts if they include the nipple, but we always allow photos of women actively engaged in breastfeeding or showing breasts with post-mastectomy scarring.” The photo that Beth shared clearly shows a mastectomy scar at the top of the breast. And yet, your staff have suspended Beth’s account because she has been accused of violating the community standards–standards that explicitly allow this photo to be shared. The photo that Beth shared is at the bottom of this letter.

Those of us in the breast cancer community have found ourselves repeatedly targeted by people reporting post-mastectomy photos. This is consistent with the ongoing sexualization of our disease–a disease that will take Beth’s life, and mine. That our cancer involves our breast does not make pictures of our scars and our reconstruction pornography, any more than photos of people with other amputations is pornographic. It has become exhausting having to repeatedly defend the posting of such photos, and to be blunt, your staff seems to have a difficult time following your standard that such photos will “always” be allowed. Indeed, Beth is not the first woman to share such a photo whose account has been suspended. 

And so, I’m writing with two requests: that Beth’s account be reinstated, since she clearly has not violated Facebook’s community standards; and that you train your staff to recognize a post-mastectomy photo, so that this harassment from your users of women recovering from a mastectomy will finally end. I await your response to my requests.

Sincerely,

Beth Caldwell

Co-Founder, MET UP

   

Komen is not coming to save us

Posted on by Beth Caldwell

So, San Antonio. That was a hell of a week. By now, you may have heard that Dr. Kelly Shanahan (a fellow metster and a seriously smart woman) and I had an interesting conversation with a scientific advisor for Komen, Powel Brown. I wrote a Facebook post about it on my personal wall, and made it public. Here’s what I wrote:

This week, Kelly Shanahan and I had a conversation with Powell Brown, a member of the scientific advisory board for Komen. We explained to him that the metastatic community is largely dissatisfied with the small percentage of funding that Komen spends on research, since research is the only thing that will save our lives. I told him that they need to change their split between the national and the locals so that more money is available for research. His response was that he doesn’t believe Komen will change that ratio, and that Komen would not begin funding more research until the metastatic community gets behind Komen. He said that if we want Komen to spend more on research, we should participate in their fundraising efforts. He said that more fundraising would mean more money available for research. I told him there was no way that our community could get behind an organization that chooses to spend its money on things other than saving our lives, especially given that there are other organizations that spend a much larger proportion of their funding on research, including BCRF, which now outstrips Komen in dollars spent annually on research. His response was that if that’s how we feel, we should just support BCRF instead. And he walked away.

This is what a national leader for Komen feels about the metastatic patient. We are disposable because we don’t fundraise for them. Do not let them fool you into believing they care about us. Our lives don’t matter to them. And that’s why Komen is irrelevant to us. We must and will save our own lives.

Upon reading this, I think I broke the metster portion of the Internet, since the post was shared over 1000 times and the awesome Eileen aka Woman in the Hat also wrote about it on her blog, for which I am super grateful. I got a lot of people saying how brave I was to share this conversation, to expose what a national advisor to Komen actually thinks about us and our disease. But you know what? When you’re dying, when your friends are dying, I mean, what do I have to lose? What’s Komen gonna do to me that cancer already isn’t? Brave is when you’re scared and you do it anyway–but I’m not afraid of Komen, so it’s not actually bravery. It’s just giving no fucks, combined with a whole lotta anger.

One of my friends emailed Komen CEO Judy Salerno about this. And this was her response.

I appreciate the opportunity to address some of the issues you raised in your email to us this weekend. I’m not sure there’s an answer that will satisfy everyone, but this is important to me and I hope we can have additional conversations. 

This starts with an explanation from me about why we do what we do. I promise to be very candid, as you’ve been with us. 

As I write this, I’m thinking about the people I knew who have died of metastatic disease just this past year. One was our Komen Ozark executive director, another was a longtime Komen patient advocate, and another was a dear friend of mine who died last month. There are others, of course, but I mention this so that you know that this is personal to me, as it is to everyone at Komen.

I’ll start with our approach to research. Jill, as you know, we’d like to fund everything that needs to be funded, but the reality is that this disease is complex, its impact is huge, and our resources are finite. Finding cures requires a comprehensive understanding of how breast cancer starts, how and why it spreads, why it affects some women differently than others, and how to better treat it or prevent it.

This is why we at Komen fund along the entire research spectrum, because there are many issues to understand and solve, and what we learn in one area may lead to answers in another area. Some of our research projects – in biology and causation, for example – are not specifically labeled as metastatic research but could have applicability to metastatic disease. That said, we’ve devoted half of our new research funding specifically to metastatic disease in 2015 because it is a priority for us.  

Finding cures through research is, and always has been, at the core of our mission. But we also know that too many people die of breast cancer because they can’t access high-quality healthcare. For that reason, a significant portion of our mission spend is directed to programs in thousands of communities that pay for things like insurance co-pays, diagnostic tests, patient navigators, and other medical expenses, as well as what we call treatment support: transportation, childcare, emergency living expenses, and other things that often stand between patients and their medical care. A list of what we and our Affiliates fund in the community is available here.

Some mistakenly label the community health aspects of our work as “awareness.” It is, in reality, the in-the-trenches work that must be done to help women and men who face breast cancer today, at all stages of the disease. Komen is the only breast cancer organization that funds this kind of large-scale community health work along with a large research program. We do this because it also contributes to saving lives. 

Finally, Powel Brown is an esteemed scientist and a member of our Scientific Advisory Board, which serves as an advisory body to Komen on research and cancer science, but does not advise on our organizational or operational priorities. He was not speaking for the Komen organization, but he is correct that our ability to fund research – or any of our work – depends on the amount of money we’re able to raise every year through our donations and fundraising events. This year, we’ve begun a new donation program which gives donors the ability to fund metastatic research directly. We encourage those who are interested in supporting metastatic research to help us fund those projects through this directed donation program.

We also want to keep the conversation going, through the many venues we have to engage – the Metastatic Breast Cancer Alliance that we helped to found, with metastatic patients directly, and by exploring joint funding of metastatic research with other cancer organizations. 

Like cancer itself, these issues are complex and not easily resolved. There are areas where we may not always agree, but I want you to know I am listening. More importantly, I have identified metastatic disease as a Komen priority, meaning continued investment in metastatic research and help for metastatic patients. Our common enemy is this terrible disease. 

Sincerely,

Judith A. Salerno, M.D., M.S.

President and CEO

Susan G. Komen

OK, so, there’s a lot to unpack there. Let me start at the beginning.

Saying “I have friends who died of breast cancer so this is personal to me” is the equivalent of a white person saying “I have a black friend so I’m not racist.” Excuse me while I roll my eyes and thank you for deigning to be friends with the likes of us. If it’s so personal, why is Komen spending so little on research, which is the only thing that will save our lives? Actions show what’s really in your heart, not words. Not platitudes about how much you care and how you’re listening can substitute for concrete actions to support our community.

Then there’s the accusation that we’re criticizing Komen for spending money on direct patient support because we conflate it with awareness. NO. The metastatic community is not stupid. We know that direct patient support is important, and we know that it is not awareness. Please don’t insult our intelligence. What we’re criticizing is the amount Komen spends on what it calls “education.” Here’s a screenshot of the most recent audited financial report from Komen–from their website, so this is THEIR data.

  
See where it says “Public Health Education”? See the total in that column? Yeah, it says $122,540,737. See what it says for “Research”? $43,396,973. Those numbers are the opposite of what I believe they should be. But the problem is, see where it says “Marketing and communication” in the column on the left? See what that total is for “Public Health Education?” $41,873,249. Of their public health education budget, nearly $42 million of it was literally spent on advertising. Nearly as much as their entire research budget. See, with “education,” you can count your marketing expenses as a program expense by putting something educational on your marketing materials, and then it looks like you’re spending a bigger proportion of your budget on the mission and less on administrative expenses. Can’t really do that with research.

So no, I’m not complaining about the $13 million they spent on “treatment services.” I’m complaining about them spending almost 10 times that much on awareness, a third of which is actually marketing.

Then there’s the part about how Dr. Brown doesn’t speak for them. OK. Then maybe don’t put him in front of the Komen booth at the largest breast cancer symposium in the world and let him talk to people? Maybe don’t put him on your scientific advisory committee?  

My favorite part, though, is that after saying Dr. Brown doesn’t speak for them, she confirms the core of the offensiveness of his comments: Komen won’t do more research until they get more money. An organization that spent $122 million on awareness can’t be bothered to shift any of that money to the only thing that will save our lives: research. 

And then there’s the standard “We’re listening” stuff. No you’re not. You’re talking. And you don’t even realize that you’re lecturing metastatic patients. We’re dying and you’re telling us we shouldn’t complain that you’re letting us die. See what I mean about “I have friends who died of breast cancer so this is personal for me” being eye-roll-inducing?

And this is why Komen continues its steady decline into irrelevance. It’s living in the past, and this is why we as metastatic patients have to realize that they’re not coming to save us. We’re going to have to save ourselves.