An Open Letter to Mark Zuckerberg 

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.


Beth Caldwell

Co-Founder, MET UP


Komen is not coming to save us

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. 


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.


I should be writing about the San Antonio Breast Cancer Symposium that I attended this week. I learned things, I hugged people, I made new friends, I saw old ones–and we made our voices heard. But that’s not what’s on my heart today. Today, Maria is all I can think about.

Maria Carballo and I met at the Living Beyond Breast Cancer conference last year. She was funny and beautiful and sassy, and I immediately liked her. She was part of a group of us that tried to sneak into the ballroom dancing competition that was happening at the same hotel as the conference (we failed, but we all complimented the dancers on their amazing asses). She sat at the dinner table where we decided to do the die-in at the conference. 

And today she died. She was just 41.

I’ve written before about how much living with metastatic breast cancer is like having AIDS in the early 80’s. But today I’m really feeling it, how the band is marching on, while there is a crisis of women dying and dying and dying. I’ve had three friends die in the last three weeks. I have two more friends in hospice right now. 

And I can’t tell you how many people have told me and my friends this week not to piss off the researchers, not to be too loud, that they’re trying plenty hard enough, that we don’t want to alienate them. That we should be grateful we’re not in the radical mastectomy era anymore, that things are so much better than they used to be, that 6 months of extra life is a major success, that we should be grateful for those 6 months on a toxic treatment that leaves us unable to parent our children, unable to bear children at all. That we aren’t arguing strongly enough and that’s why we’re dying. That we should just join a clinical trial, that if we don’t we can’t expect any breakthroughs, even though we don’t actually qualify for any trials because we have brain mets and we’re too heavily pretreated, and even if we did, we don’t live in New York or Houston or Boston where most of the trials are. 

That there’s exciting research happening on our corpses.

So many excuses for why Maria is dead. Why Michelle is dead. Why Seporah is dead. Why Lisa is dead. Dead. Dead. Dead. Dead. Dead. Dead.

How many more of us have to die before someone does something to stop this? How many more tears must we shed before someone listens? When will the excuses and the patient-blaming end? When will there be a sense of urgency? When will all this death stop?

I don’t know how much more of this my heart can take before it’s permanently broken. Before I can’t pick myself up and keep fighting and fighting and begging for help.


A Very Heathen Christmas 

Here’s the deal with our family: we’re not religious. We’re heathens. It’s not that we don’t believe in God necessarily, it’s just that we can’t be bothered to care either way. We’re also not anti-other people’s faith, unless it involves them being a dick. Hate faith we’re super opposed to. But if your faith is about kindness and love, then you get down with yo bad selves.

Just because we’re heathens, though, doesn’t mean we don’t love Christmas. (Well, I do anyway; The Hubs is a bit of a humbug, but he grudgingly tolerates my Christmas cheer.) This is how I feel about Christmas:


yes, those are Mickey Mouse ears on my Santa hat.
Yeah, I’m basically Buddy the Elf. I freak out at the end of the Macy’s parade when Santa comes. And I decorate like crazy. My favorite part of Christmas decorations is the lights. It’s our rainy season, and it gets dark at about 4:30 these days way up here (did you know Seattle is north of Maine? Look it up) and Christmas lights make it feel more hopeful and cozy instead of dreary. 

Don’t get me wrong, I get that for Christians this is a holy day and I know the story of the birth of Jesus. In fact, I tell it to my kids. It’s important for them to know that stuff if they’re going to live in this culture. We just also tell them that whether they believe Jesus was the son of God is up to them. And we celebrate the kindness in the story–the wise men bringing Jesus gifts, the angel bringing good tidings. 

The Girl isn’t sure about Santa anymore, The Boy still believes in Santa. I think he’s worried if he says Santa isn’t real, the gravy train of presents will stop. Which is probably why he’s all “Sure mom, I’ll take a selfie with you and Santa.”

Santa asked “Where’s your selfie stick?”
I used to have a coworker who was Jewish and she was like, “When I moved to Seattle, everyone kept inviting me for Christmas because they felt bad I nowhere to be that day, and they just didn’t get thy it’s just a day to me.” And I was like, “That’s because we’re all heathens out here and it’s not a religious holiday for us. It’s a day to eat a lot and watch A Christmas Story nonstop for 24 hours.”

Heathen Christmas is pretty awesome. There’s presents and chocolate and we hang out all day in our PJs, and Jesus looks down on us from this picture.  

He looks pretty happy, don’t you think? 

Xeloda is my new best friend

A brief update, because I couldn’t leave you all hanging after that last post about my scanxiety! The brain MRI showed that all those pesky brain mets are either gone, or they’ve been treated and no longer are cancerific. WHAT WHAT!!! I’m over the moon, you guys. And now I just keep trucking on my Xeloda, which so far has come with minimal side effects (I have grown to love this website for inspiring the phrasing in my emails to #bestdocever about my poo) despite my extra high dosage. My next brain MRI will be in 8-10 weeks unless something happens in the meantime. 

This week has been really hard–I’ve been feeling really…fragile. I told #bestdocever that he’s not allowed to tell me about my tumor markers anymore, and he promised he won’t. But now that we know those tumor markers were right and I can keep with this treatment, I’m so much more calm. SO much more calm.

A huge huge huge THANK YOU to everyone who has sent their love and support this week. I have THE best readers in the world!!!