You’ve seen the pink ribbons and heard the inspirational stories and maybe even participated in a Facebook status-posting game or two, but what we’re here to talk about is the real, raw, sometimes ugly side of breast cancer. The painful truth is that this is not a beautiful struggle. We breast cancer patients are not trying to be heroic or graceful or bravely positive. We’re trying to live, and we don’t care about your emoticons or bra color. We want meaningful action.
The following interview is a transcript of a conversation I had with Melissa McAllister, Susan Rahn, and Melanie Childers, the founders of The Underbelly magazine in October 2016.
It Was Just an Idea
UB: Our story began a few years ago when we became friends through our breast cancer experience and various online communities for support. Melissa ran Brave Girl Boxes; Melanie hosted the Badass Survivors podcast and Susan was advocating fiercely for MBC and Aid in Dying with a recognizable blog, Stickit2Stage4. We began traveling together and sharing our experiences while advocating and pushing for more research. Naturally, we decided we wanted to work together to create a unique space that didn’t exist for breast cancer until now.
SC: I’m just at the beginning of all of this. I was diagnosed last June with Stage IIa, right before my son’s high school graduation. After undergoing a bilateral mastectomy and completing six rounds of chemotherapy, I’m now debating radiation, and I have more surgeries to prepare for. Can you tell us about your diagnoses and your current status?
UB: Melanie and Melissa were each diagnosed early stage in their thirties and currently show no evidence of disease (NED). Susan was diagnosed metastatic de novo in her forties and is currently NED but will remain forever in treatment. She has surpassed the 36-month median life span expected after a metastatic diagnosis.
SC: Tell me about The Underbelly’s mission and what you talk about on your platform.
UB: We spent a lot of time deciding what our goals would be and what this project would symbolize and mean. This was going to be our collective dream come to fruition. Early on in our diagnoses, we were desperate for real-life, personal depictions of this ordeal. We had to glean information from a multitude of blogs and websites that (at best) were placating and downplaying the dark road ahead.
Doctors were either not willing or simply incapable of truly preparing us for the days that would follow procedures and treatments and the years of emotional frustrations and physical limitations that would follow were unimaginable. Most notable was the complete lack of dialogue regarding our emotional and mental well-being as we traversed this new landscape. Especially how life afterward would look and what it was like to not have an afterward, to always be in treatment until a cure or death, whichever arrives first.
We wanted a place where we could connect and read and share honestly. What would it look like if we created a space where we were all writing? A place where we could invite others to write as well? What if we could face these truths and obstacles and cry about it and deal with it and make informed choices based on honest accounts from women and men who’ve been there (the literal underbelly)? What if we could bridge the divide between early stage and late stage patients and dispel myths and build a united front?
Without a place like this, that challenges the common narrative, women are likely to continue falling into the “pink trap” of unrealistic expectations and roles with labels they can’t live up to. Roles like fighter, survivor, hero, brave warrior, happy, gracious, cancer patient, etc., etc. Only to end up unable to deliver and wondering… What’s wrong with us? Why can’t we even do cancer right?
Combating the Common Narrative
UB: What we’ve been told is (in large part) A BIG FAT LIE. It’s a story full of misconceptions, silver linings, and happy endings. The dangers of the common narrative cannot be overstated. It places so much unnecessary pressure on newly diagnosed individuals. When our experience doesn’t match up with the narrative, we begin to doubt ourselves and feel like failures at healing and recovering physically, mentally and emotionally.
Additionally, it sets the people who are caring for and supporting us up for failure. Confronted with a reality that doesn’t match the ideology they cannot successfully provide the level of care and understanding their loved one needs.
The truth is that cancer doesn’t just happen to you for a year and then you’re over it and back to “normal.” You don’t get to go back to who you used to be. The only way out is through, right? It’s never completely over. The goal post keeps moving. No matter how much time has passed between you and your diagnosis, there is a mark we can never be rid of, and only another cancer patient will understand that. Not even a doctor will get it.
So, we want to tear that narrative down. Unravel these falsehoods and replace them with an expansive warehouse of real accounts of life with cancer. This culminates in true connection which is paramount for our recovery and progress. We want to share potential tools in order to better cope and recover and get back to living (as much as that is possible).
That whole narrative that we’ve been force fed – we want to DESTROY IT!
Let’s Get Real
SC: I want people to understand the kind of stories you tell on The Underbelly because it’s going to be different than what they’re used to seeing.
UB: We invite and encourage every woman and man who’s had breast cancer to contribute and share. Family, friends, spouses, children, caretakers, and more are invited to be involved in this magazine. Everyone has a story to tell, a perspective we want to hear. We’re here to support each other. We want to be a vehicle to lift our community up, out of the dark.
You’ll find stories of depression, family struggles, marital issues, sex talk, difficult treatments and their endless side effects. You’ll read about what it’s like to be dealing with cancer as a young person, as a parent, the uninsured, unemployed and the isolated. You’ll read about metastatic breast cancer and activism and all the things that we shy away from when speaking publicly about breast cancer.
SC: I don’t think I’ve seen a platform quite like the one you guys have created, specifically to talk about the things that nobody talks about.
UB: We want to explore all those little dark crevices. Those corners of cancer that we’ve always steered clear of, that we have been groomed to ignore and only whisper about. When you shine light on dark things, they aren’t so scary anymore. We’re incredibly vulnerable when we’re in those spaces and sharing the truth about how full of pain we are can be the one ray of hope to a reader who (for the first time) realizes they’re not alone. We have a responsibility to honor the dark things and walk out of it hand in hand. This honest use of our collective voice is our most powerful tool.
Shame Shame Shame
SC: I like that The Underbelly is a place for women to be themselves. To be their ugly, honest selves out in the open. A place you can vent and commiserate and not hide. Sometimes, I don’t need to feel grateful that I’m drinking this disgusting kale shake right now. I don’t always want to be happy about my awful situation and women are shamed for not being happy all the time. There is a lot of dark humor and anger.
UB: There is a lot of unacknowledged shame surrounding breast cancer, and we know that shame loves the dark. So, we douse it with lots of light and words and images so that it’s no longer allowed to live in the dark. It’s one way we break free. One way we can rescue ourselves and one another.
We promise you, most of the women and men we know (who’ve been diagnosed) were incredibly healthy eating, living, and healthy-minded individuals and they still got cancer. So already, we’re failures because we didn’t prevent our own cancer. If we aren’t blaming ourselves we often find ourselves on the receiving end of “blaming talk” amongst friends, family, strangers even and yes, doctors too.
Hell, half the articles you read about cancer are all about placing responsibility on the patients to make certain they do everything they can never to get cancer. So, the “prevention” model is not only overrated, but it’s having an enormous backlash on patients themselves. It perpetuates the inaccurate idea that cancer patients cause their own illness. And then once you have it…it’s on you to make certain it doesn’t return.
There’s also immeasurable body shame that we experience at the hands of ourselves, family & friends, the media, society in general and even within our very own community. Our emotional response to cancer is met with criticism. Our complaints are seen as ungrateful and our mental wellness is still a stigma no one wants to touch.
We’re judged every step of the way, even the way we recover. Oh, and hey, don’t forget you’re a woman. You can’t stop. You can’t take time out for you, or you’re selfish.
You Should Really Smile More
SC: I’ve definitely encountered the additional expectation of having to be pretty and smiling during such an incredibly difficult and sometimes painful period of my life. It’s beyond frustrating.
UB: Exactly. When we’re told to smile and that everything is going to be okay, it’s kind of a slap in the face. That’s not what we need. What we need is to be allowed to go through all the stages of grief (including anger). We deserve the necessary time it takes each of us to get through each stage as well. You cannot hurry grief.
We also shouldn’t have to put on another persona to make other people feel better, when what we’re going through is straight up misery. Women are expected to think more of others and less of ourselves. We are more often than not, our own last priority. This is easily the most proper time to be selfish and your number one priority.
The Body Box
SC: It’s hard to suddenly be breastless and bald. It feels like a mutilation. It is. It’s a voluntary mutilation that we go through. I am feminine-identifying and now I hardly recognize myself.
UB: You think it will be easier than it is. There is a lot of societal pressure to regain the traditional outward appearance of a being female. Especially as it pertains to hair loss and breasts. Women go the EXTRA mile to look pretty with wigs and makeup that quite honestly, they barely have the energy for. This pressure to look “female” also increases the pressure to reconstruct.
SC: Right? From the time we’re little girls, breasts are a goal.
UB: Yes. The problem with succumbing to the pressure to reconstruct (or perhaps not even being given the option to not reconstruct) is that it’s a choice that many of us are not prepared to live with. Melanie and Melissa both chose reconstruction and later faced complications and dissatisfaction with the outcomes as countless women do.
The truth is, the majority of breast cancer patients DO NOT reconstruct, but you don’t see that represented as often, so part of our goal is to shine a light on the very beautiful choice of remaining flat. There are incredible women in our community (Flat and Fabulous) shining a light on this particular side of breast cancer, and we are so proud to work together with them to continue reminding women that breasts are not the ultimate goal. Living is.
It’s All In Your Head
SC: At Sweatpants & Coffee we talk a lot about mental health. For someone like myself who had these underlying conditions (anxiety, depression, PTSD) I found it hard to distinguish between symptoms of mental health decline and treatment side-effects. Was my fatigue depression or chemo? Was my inability to think anxiety or chemo brain?
I was recently up late at night reading an article about chemo brain. It’s a relief to read that what I’m experiencing is a real phenomenon. I have good girl syndrome, so every step of the way I think I’m faking. Receiving a diagnosis or reading an article explaining my issues in black and white helps so much because (while it’s awful), I’m not faking! The idea that my brain might not return to the way it was is terrifying.
UB: Ultimately we think it’s underestimated, the degree to which cancer affects our cognition and mental health. We focus a lot on this aspect of our lives. We’ve each experienced a decline our in mental well-being since our cancer diagnoses. We talk quite openly about how difficult it is and ways to improve this aspect of our life (post diagnosis).
You Got the Good Cancer
SC: I think there is a tendency for people to think breast cancer is “the good cancer.” I think it’s because of all the pink and awareness campaigns they see.
UB: That’s a great segue. No Cancer is good. They are each bad. Some have more successful treatments and have less likelihood of dying as a result. Breast cancer, however, is still incurable and it is most certainly terminal once it has advanced beyond the breast to places like the bones, liver, lungs, and brain.
Let’s Talk About MBC
SC: Let’s talk about metastatic breast cancer statistics. Because I don’t think all these people out there carrying their pink pepper spray really understand. I don’t think people realize how serious these statistics are. What are the current numbers? I want people to know the truth.
UB: There are so many layers to this answer, and it’s important that people understand them.
In the United States alone:
- The median life span of a metastatic breast cancer patient is 36 months post diagnosis. It is estimated (because we don’t track the progression of cancer) that 155,000 people are living with MBC.
- Each year we lose over 40,000 people to MBC (2016 totaled 40,890). That’s approximately 113 deaths every single day of the year. This has been happening for the past three decades with no significant decline. That’s incredibly telling.
- 6-10% of all new breast cancer cases are metastatic de novo (from the start).
- It is estimated that 30% of Early Stage patients will at some point experience a metastatic progression.
- Metastatic breast cancer research garners only 2% of all money raised for cancer research. It’s shameful.
- Our health system focuses on prevention of cancer. What we need is research to generate successful treatments that halt cancer in its tracks once it starts. Research that saves the lives of people who are already stage IV.
Find more facts via American Cancer Society.
SC: Those are shocking numbers. I’ve always thought breast cancer was the best-marketed illness, but I don’t think people understand that pink ribbons aren’t doing anything anymore.
SC: I have succumbed to pink washing. I walked and raised thousands of dollars. I didn’t know where the money was going. I didn’t know about Charity Navigator. I had a false sense of accomplishment.
UB: Most of us have been there, walking and running, donning pink tutus at one point or another. Eventually, we got smart. We live in a culture of blind trust and slacktivism. Run/Walk/Shop and pay no attention to where the money trail leads. We’re a society that loves to feel good about doing good – yet most people have absolutely no idea what the outcome of all their “good” deeds is.
SC: People mustn’t be lulled into complacency by the PINK movement. It takes away this sense of urgency and people NEED to feel a sense of urgency for the 40,000+ people dying every year.
UB: These organizations have a responsibility to shift their message. They have a captive audience. If they would just shift their focus to more research and more honesty regarding progression and death, they could end the PINK FOR PROFIT culture and continue the good they started. The problem is that we’re all hyper-aware and it’s to the point of that complacency and false safety.
We are facing a 50% increase in breast cancer rates by 2030. If that isn’t motivation to do things differently, we don’t know what is. People must be called to action, and currently, that’s a movement that’s happening at the grassroots level across the country. Big breast cancer organizations are NOT on board. The patients are left doing all the heavy lifting, and there’s something so wrong about that.
Let’s See Each Other
SC: I love that The Underbelly is a place where you get to be whole and seen.
UB: That’s our goal. We want everyone to feel seen, heard, connected, less isolated, less alone. We always say we’re prepared to be in the mud together!
Call to Action
SC: How can people help your project?
UB: There are so many helpful things you can do! Primarily, sharing our work is the biggest help because the more eyes there are on these honest stories, the more truth there is about breast cancer that exists in the interwebs. If we help one person feel more understood, we’ve done our job. The world is a little less dark this way.
- Got something to say? Share it with us! We are always looking for more stories to share.
- Want to help us financially? We have a PayPal donation button on our website.
SC: This is such an important thing you are doing, and I’m so happy to connect with you.
UB: Thanks for talking to us and sharing this important message. We’re all impacted by breast cancer in our lifetime. This matters.