The Black Cancer Podcast
Episode 5: I Want Black Women to Have More Choices (with Erika Stallings)
Transcribed by: Kisa Nishimoto, Eryn Strong, Elizabeth Jarvie, Hannah Rosentreter, Sonia Montejano, and Gina Marioni
Running time: 67:56
Erika: My whole steez right now is like, you know [Jodi-Ann: laughs], ‘cause I’m sure this happened to you, right? Like, you know, beginning June 1, all these people are like, “Oh my god, you’re Black. Can I talk to you about being Black?” I’m at a point where I’m just like, anybody wants to talk to me unless it’s like, a close friend. You got to write me a check. [Jodi-Ann: Yup. *laughs*] Otherwise, I cannot talk to you. I don’t have time, space or energy for you. So, anyway, cancer. We can talk about cancer. [Jodi-Ann: Yeah. *laughs*]
[Theme music fades in]
Jodi-Ann [as host]: Welcome to Black Cancer. I’m your host Jodi-Ann Burey. My guest on today’s episode is Erika Stallings, a New York based attorney, writer and BRCA awareness advocate. Erika shares her story about uncovering her BRCA2 gene mutation in her 20s.
Okay, quick genetics breakdown: BRCA is just an abbreviation for breast (BR) cancer (CA) gene. Everyone has a BRCA1 and BRCA2 gene, but it’s the mutation of these genes that can mean it’s more likely that you’ll get breast cancer, get it earlier or pass it along genetically to your children. She and I talked about her mother’s cancer experience and Erika’s own path to genetic testing. We talk about her preventative mastectomy, the importance of medical literacy and the power and limitations of privilege.
Listen up. There are more links for this show than any other show this season. Erika is full with knowledge. So there’s no post show this episode. Take that time to check out Erika’s links in the notes. And for extra credit, Google her name. Read every single thing she has ever written, ever. So good. This is a great one, y’all. So please bear through *chuckles* any technical glitches. We are in the inside times.
Here’s my conversation with Erika. You’ll hear Erika’s voice first.
[Theme music fades out]
Erika: And I’m really happy you’re doing this because honestly, I think I told you that this is actually how I started any type of freelance writing. Because when I got my diagnosis, I was just like, Googling to be like, Okay, there’s gotta be like a blog, or just some-something for Black women. And I didn’t find anything. [Jodi-Ann: Yeah.] And I looked. And I was just like, This can’t be. I cannot be the only Black woman who has a BRCA mutation. It’s not statistically possible. We’re not in this – we don’t like, get asked to be in support groups, we don’t get asked to do the big campaigns. Like – And then like, the flip side of that though, now like everytime somebody wants to do a campaign for Black people, they call me. And I’m just like, Y’all gonna have to diversify your contacts. *both chuckle*
Jodi-Ann: So I think that’s a great entry point to start officially. [Erika: Yeah.] What does it mean to be a part of the cancer community without having had a cancer diagnosis? And so making that distinction and how you, you feel and comport yourself into the cancer space?
Erika: Yeah, that’s a-that’s a great question. And it’s something I’m very sensitive to for a couple reasons. You know, one is I’ve seen my mom deal with two different breast cancer diagnoses. So the first was when I was in my childhood, when I was eight, my mom was only 28 years old. That was before researchers knew that there were hereditary cancer syndromes, right, that could elevate your risk of cancer. But then the second time, my mom had breast cancer, I was in college, it was my senior year of college. And my mom chose to have her treatment, surgery and treatment, done at UNC Chapel Hill, which is where I was in school. So I saw it very firsthand, you know, my mom would stay with me overnight. You know, I would sit with my mom when she got, like, chemo appointments and everything.
So I always want to make it really clear to people, I have a mutation that gives me a very elevated risk of breast cancer. But I haven’t experienced it yet. And I’m really cautious about that. Because I’ve seen my mom go through it. I just know what an intense experience that is. But what I sort of view my role in the breast cancer community to be is… to share my story with other people to make people aware of the importance of knowing your family history, of knowing about hereditary cancer syndromes, so that other Black women like myself can have the same opportunity that I have. You know, if my mom had known that we had this mutation in our family, my mom might have been able to take some steps to not have that second recurrence of cancer, right? And I know – I think she even has PTSD from the experience. She thought cancer was something that was over for her. She’d been in remission for 14 years, and then she got it again. So I view my role in the community as to be able to share my story, to share that knowledge, because I want other Black women to be able to make some of the – make those same choices that I was able to make.
Jodi-Ann: I think about that in a couple of ways. 1) What does it mean to be a part of the cancer community when your entry point into it isn’t how people generally think about cancer narratives?
So, for even me, as someone who has had cancer, but I had surgery and not chemotherapy, there’s a distancing there. You know, and I remember chatting with a friend who had cancer, had chemotherapy, but she never lost her hair. And she feels a distancing there, like even within the cancer community of trying to find space for her story, for her experience. And so there are times that I even question, you know, Do I belong here? Do I belong in this space? Is my narrative important?
But I think, similar to you, and I love what you’re saying here, that everyone has their role in telling this story. Did you have it? What was the experience? Did someone you know have it? Did you not have it, but there’s this genetic piece that a lot of folks don’t talk about, generally. And we certainly don’t see women of color, Black women in that narrative. We all have our roles in how we can elevate and work on the prevention side of cancer. And this conversation in the context of Chadwick Boseman’s recent passing, is weighing really heavily on me. ‘Cause he died of something… what – he was years away from even being screened from it? Like, what is cancer prevention? Or, what is that, you know, that whole screening process. Or, you know, trying to get a sense of, are you at risk, understand your risk levels. That’s a whole piece that we don’t talk about, and we don’t build well into our healthcare system. You know?
Erika: You know, it’s really interesting ‘cause when I got the news about Chadwick Boseman passing last Friday, I mean, he was so, you know. And I think something that people don’t really understand, or else I wouldn’t emphasize it, is like cancer is not supposed to be a thing that happens to young people, right? When you get cancer at that kind of age, there’s something going on. And so, part of me was like, Did Chadwick have a family history of colon cancer? Did he have a family history of cancer? Did anyone ever talk to him about this?
You know, it’s interesting, because at the same time, I’m in a group chat with, with a lot of Black genetic counselors. And we were all talking about that, right? Like, this is, in some ways, an opportunity to raise awareness of genetic counseling and family history. At the same time, we don’t know like, what Chadwick’s circumstances were, right? Like, maybe he did get genetic testing. Maybe it came back as variant of unknown significance, right? So it’s tough. But I think it does emphasize for me why I – why I think the work I do is important. Why I try to do it is because, to your point about when you talk about preventative screening, I think a thing people don’t realize is that a lot of the preventative guidelines are not based on – they don’t have good data for Black people.
So for example, for people who are listening, you know, recently, the national guidelines for when women should get a mammogram, there’s been a lot of debate about whether that just started like age 40 or age 50. And there was a study that came out from Harvard University, I want to say in 2016 or 2017, I could find it if you wanna link it in the notes. But essentially, it was saying, like, those recommendations are based on data from white women. And if you – use a, if you actually were to use those guidelines, you would miss a lot of like Black women, Latino women, Asian women, right. Because their cancers tend to happen, do tend to happen at an earlier age.
So even when we’re talking about these national guidelines around prevention, they’re not based on data from minorities. Because a lot of times we’re not represented the studies, and we’re not represented in these databases. So, it’s a problem that like, permeates everywhere.
Jodi-Ann: Yeah. And then we pay for that with our lives. Your bad data, is my bad health outcomes.
Erika: Yeah. I mean, you know, it’s – you know, I think it is a time where everyone’s really emotional. But, you know, for whatever reason, the Chadwick thing hit me so hard, and I guess it is because of the cancer thing. But I was just like, he has like, such a vibrant life, he just seemed like such a good person. And I was just like, Black people, like, not only are we like, robbed of many things because of racism, but we’re actually like, robbed of time.
And then the thing that drives me crazy, these things happen, and then I get really stressed out about them. And I’m like, but I can’t get too stressed out about it, because there’s also like, data, that literally the stress of race- racism ages us, right? So we aged more rapidly than white people because of the stress of racism. And so I’m just like, I’m so mad, but I don’t want to be mad because being mad is like, literally, like taking years off of my life. So, I don’t know. I think about that all the time. You know, ‘cause sometimes people like, “You’re really impatient.” Or – like you just, you know, people yeah, I’ve had people say to me, like, “You’re just impatient.” Like, you know, “You gotta be…” you know – “Things will happen when they happen.” I’m like, I’m Black. I literally have less time. I think about it all – I just think about that so much.
Jodi-Ann: Yeah, no, that’s so real.
Erika: I think the thing that has been really important to me over the past couple of years, you know, I got my BRCA mutation diagnosis in 2014. It’s been really important for me to also try to disrupt some of the narratives around … having a mutation not just from a racial perspective, but also from kind of like an emotional mental health perspective. You know, that whole fall, after I got the diagnosis, I made the decision to have surgery. I was like – I was struggling. *chuckle* [Jodi-Ann: Yeah.] And like, it’s only in hindsight, that I see how much I was like mentally struggling. But at the time, my kind of mindset was, Well, I don’t have cancer. I’m getting to do something about it, preventatively. This is great. Why am I complaining? I’m not having to go through chemo, I’m not having to go through radiation… Which was like, not a healthy mindset.
And so, I think another thing that, like, I want to continue to do, you know, through my writing, and also talking is to get people to understand like, even if you go through the situation, and it has a positive outcome, it doesn’t mean that it doesn’t impact you [Jodi-Ann:Yeah], emotionally. It doesn’t mean that it takes a toll on you. And I started seeing a therapist after my diagnosis, like after my surgery, and my – in hindsight, I should have started seeing her like, the same week I got the diagnosis. I had all these feelings to process. And I think there’s something very unique about America, in the way that we kind of like put cancer narratives in these like boxes of like the warrior. You know, you’re like, you’re out here fighting a war. You’re – you know, cancer strong. And it’s like, No! And guess what, maybe-maybe I am fighting, that doesn’t mean that that fighting is also not taking a toll on me mentally. So, and I also say to people too, you know, it’s like, I had this mutation. I had a mastectomy. The mastectomy dropped my risk of breast cancer from like the, you know, 80% to less than 5%. [Jodi-Ann: Oh my god.]
But, I’m still at risk for all these other cancers, right. You know, you still have to go get screened for ovarian cancer. I will start getting colonoscopies when I’m 38. I’m at risk for pancreatic cancer. I’m at risk for melanoma. So, I kind of like don’t necessarily know where my – like if my cancer story is over. You know, like, knock on wood, I get a lot of screenings, I see really great doctors, they-they do all the, you know, cutting edge stuff. But it’s also like, I kind of live in a limbo of like, you know, there is the possibility I could get cancer someday. I don’t know. So it’s not this really neat narrative, you can wrap a bow around.
Jodi-Ann: You saw your mother go through this, um, she survived this. Not once, but twice. And you were a close witness to that. And so, was that part of how you decided to get the test? Or, you know, what research you had looked into it? How do you go from, “I see this happening. I’m going to go get a genetic test.”, when we know that that’s not something that most people do, much less women of color.
Erika: Yes. So, I think that’s – I’m really glad you asked me about that. Because I, I recognize that not only do I have extreme privilege, some of this is actually just like luck. So where I grew up, which is where, you know, my mom was living with her second cancer diagnosis. We lived in a – we, I grew up in a really small town in eastern North Carolina. It might have 40,000 people, right? So not necessarily your most cutting edge oncology treatment. [Jodi-Ann: A mid-sized college was your whole town.*chuckles*] Yeah.
Like my whole town, right? And, as I kind of alluded to earlier, because I was finishing my senior year at UNC Chapel Hill, my mom was like, “Oh. Well, actually, it’ll just be easier for me to get my surgery and get treated at UNC Lineberger.” Which is one of the best cancer hospitals, like, in the Southeast.
I think it’s because she saw very sophisticated doctors that someone was like, “Wait a minute – your medical history, like, this is odd. You’ve had cancer twice. Under, you know, both times under the age of 45, you had an extremely early diagnosis when you had cancer at the age of 28, and you have triple negative breast cancer, which is a more aggressive form of breast cancer that is linked to BRCA mutations.”
So that’s when she got the genetic testing. So since my senior year of college – ‘cause I went to those appointments with her, you know, they explained it to us, okay, like, “Your mom has this mutation, you have a 50% chance of having inherited it from her”. So I’ve known since 2007 it was a possibility. Now, like, I went directly from undergrad to law school, and that did not seem like a good time to get life changing information. And then I moved to New York – I didn’t have health insurance for a year because I was in a fellowship. And then when I started at a large law firm, I was just like I’m overwhelmed, I don’t have time to get genetic testing *chuckles*. But I had gotten into a pretty serious relationship, and I thought we were gonna get married. And the person I was dating at that time, their mom had died from stage four colon cancer. And it had happened, like, very quickly – their mom had gotten diagnosed and then, like, I think maybe three or four months later, she died. [Jodi-Ann: Mmm] And so that level – part of me was like, Okay, I’m like, entering into this very serious relationship with someone who’s like, also has their own cancer experience. I’m 20-, yea, I was 29. I’m very close to the age my mom was first diagnosed, I was like, I should talk to someone about this. In the form, like before I moved to New York my mom gave me this form from Memorial Sloan Kettering and was like, “You need to take care of this, like when you’re in New York,” and it had just been, like, sitting on my work desk. So I call them – I call Memorial Sloan Kettering – which if you don’t know Memorial Sloan, it’s a very great cancer hospital.
Jodi-Ann: Oh, I went there. I’m a big fan. *laughs*
Erika: Right? And they’re like, “Okay, cool. You want to get genetic testing? It’s gonna take six months.” Right?
Erika: ‘Cause if people may not know, there’s a shortage of genetic counselors in the United States. So there’s more people wanting to get genetic testing than we have genetic counselors.
Erika: Then I was like, Six months? I already had to psych myself up to do this. So this is where the privilege comes in. I had – I was talking about this with a friend who’s like, “Oh, no, I know this woman Julia Smith at New York – NYU – she works with women in their 20s and 30s who are at high risk for breast cancer. Just call her and she’ll do your genetic testing whenever you’re ready.” And I was like, Oh, Okay. *both chuckle* I had no idea who, right, and she’s very good. Like, she’s super great. I wouldn’t have picked anyone else [Jodi-Ann: Yea.] to, like, go through this journey with me. But I had no idea who she was, right? I was like, NYU, they have – they do genetic testing. Like, What? Okay. [Jodi-Ann: laughs] So right, that’s where, like – and also I live in New York. Right? I live in New York City – New York City has, like, several great cancer centers. So some of it’s like an accessibility, right? ‘Cause I think if I had been living in DC – and maybe even living in DC, or like North Carolina I would be like, I don’t know how to find a genetic counselor. But, you know, in New York, it was like, not a huge, it wasn’t a huge lift. And like I said, it was one of those things. I guess the other thing that motivated me, too, is I have a really close friend from law school. [Jodi-Ann: Yeah.] Whose mom died of breast cancer when he was three. And it’s really been something that has impacted him his whole life. You know, so like, you know, sometimes we would talk and he would be like, “What are you gonna do about this whole, like, high risk thing?” So… [Jodi-Ann: chuckles] You know, I think – I know, yeah.
Jodi-Ann: “What’s with, you know, this whole high risk thing? What you gonna do about that?” *laughs*
Erika: But he’s kind of like, “Yeah, what’s up with that?” I was like Yeah, that’s a good point. Because he’s Ashkenazi – he’s Jewish, [Jodi-Ann: Mmhmm.] and Ashkenazi Jewish people are – they have a much higher risk of having mutations. And his sister had been tested, and she was not positive. So, you know, it wasn’t – the cancer their mom had was not BRCA related. But he was like, “Yeah, you need to do something about that”. So – and so I was like, Yeah, I’m gonna do something about it! [Jodi-Ann: Yeah.] And then I did.
Jodi-Ann: Okay, so I want to – the transition between, “I’m going to do something about it” and then, “I did” – I want to dig into that a little bit, because you talked about, you know, having to psych yourself up for this testing, only to have to go through the six month process. For someone who’s already been exposed, you seem to have folks in your life who have experienced cancer, or folks in their lives have passed away from cancer in very intimate ways so there’s always – there’s already an openness in speaking about it. I’m making assumptions based on your storytelling here. And so, what was that psych up process when you’re already in these positions of exposure to it? Like, what did that feel like for you to have to enter into, “Oh shit, like, I might know something at the end of this”, you know? Like, how did that land for you?
Erika: Yeah…So I think – I think there were like, a lot of factors that all came together at the same time. You know, I talked about the relationship. I think another major factor was I was in a place in my job where I was like, I felt really comfortable. Like, I was like, Okay people at my job really like me. If I need to take a bunch of time off of work, it’ll be fine. And I had, like, I had saved a lot of money. So I was like, Oh, like, it’s just – I have no idea how much like a surgery might be if I have a BRCA mutation, but like, I’ve got money in the bank. So it was all those things. But I think in terms of, like, psyching myself up, like I said – the form had, like, been in my office, and I was like, I would sometimes look at it, and it would look at me. [Jodi-Ann: chuckles]
Jodi-Ann: Like “Hey Sloan, how you doin’?” *laughs*
Erika: Yeah. Like remember the Diddy – you know, the Diddy gif where he’s like – him and the dude are having the staredown? [Jodi-Ann: Mhm] It would kind of be like that type of staredown. [Jodi-Ann: chuckles] But I think – I really think overall, like, I just remember being like, I would hate to call people I love and tell them I have breast cancer or some other type of cancer if there was like something I could have done ahead of time. Like that was like – I remember thinking about that a lot. Like, I couldn’t imagine, like, calling my mom and being like, Mom I have breast cancer. Because I remember how devastated I was when she called me and told me she had breast cancer and I was in college.
So I was just like, I just gotta like – and I think the other thing that motivated me to like go from being like, This is the thing I need to do to I’m actually going to do it, is the reconstruction option had gotten, like, really gotten a lot better. And so I want to say by like early 20-, like end of 2013, early 2014, the, like, science had shown that you can do what’s called a nipple sparing mastectomy, which means you get to keep your nipples. It gives you a much more realistic outcome in the breast reconstruction process. The science was like, “Yeah, this is – you know, you can keep your nipples and it doesn’t really increase your risk that much”. Right? And I was like, Okay, science is pretty good. Seems like a good time, I’ve got, like, money in the bank, you know, I’m in a relation- And you know, the relationship thing was so important, because before I was like, I don’t want to be, like, on the dating market, like, living with this mutation, or like, knowing about it. In my mind I was like, Oh, I’ve got someone locked down. [Jodi-Ann: laughs] Like, he has to stay with me. Which did not – did not turn out to be the case, but it’s what I thought. [Jodi-Ann: laughs] So I was like, Okay, all the pieces have lined up. So let’s do this thing that we need – that I need to do. So…
Jodi-Ann: Yeah, like, you had the resources, you felt like you had the right support in place to move forward with it. And I think that’s the luxury. Luxury? I don’t know. But to be in a preventative space, you don’t want to take too much time, but you do have some time to do the research, weigh some options, sort some things out, work your schedule out, and all that. ‘Cause then after you, you know, get a diagnosis, then things have to work at a much faster pace. You know, at that time option, that weighing of it, you know, isn’t isn’t really there anymore. And so I remember when I got my diagnosis, the first time I talked to a surgeon, one of my 30 questions that I brought with me *laughs* was, When do I need to be in surgery? And he said, “Jodi-Ann, this surgery cannot make you better, it can only try to get close to where you are. And so you need to be in surgery within a week.” And I had plans to go snowboarding in Europe. So I was like, Um, can we push that back a month? *laughs* And he was not okay with that, but understood that being young, I was 32 at the time, and potentially facing paralysis that he’s like, “If you don’t hurt yourself – you know, if nothing changes in the next couple of weeks, go on your trip.” Because I could wake up from surgery and never be able to do something like that again.
Jodi-Ann: Right? And so I think like the preventative space gives you way more time. But after that, you know, God forbid you get into a situation with a diagnosis, you have to start bargaining for what you want to try to keep with your life and what has to drop. Like, I – when I got my diagnosis, I didn’t go back to work for four months. That was my unknown last day at work for four months. [Erika: Wow.] And so that’s not really a situation you wanna be in to be in. Which I think that’s why this message around, like, prevention and genetic testing is so critical. So… I am curious, though, like, when you did call your mom and tell her that you were going through the test and then deciding on your mastectomy, like, what was her reaction to that?
Erika: You know, my mom would, like, occasionally ask me – you know, before I made the decision to get tested, like, “Are you gonna get tested?” You know, like when the Angelina Jolie – I’m sure a lot of people know Angelina Jolie has a BRCA1 mutation. She had a very well publicized op-ed in the New York Times about her decision to have a mastectomy. So when that came out, my mom called me and she’s like, “Did you see this?” Like, you know, “When are you gonna do it?” And I was like, I don’t know, I’m not ready to do it. And so I like – and I was trying to downplay it. So like I mentioned to my mom, like, Hey, I finally made the appointment. I don’t know, you know – I’ll call you when I get the test results. And so it was, you know, it was really hard to call her. Because my mom blamed herself. She was like, “Oh, this is a thing that I did to you.” And I was like, No, it’s not a thing that you did to me. Like, this is just, you know, the draw of biology, right? My-my mom was like – but my mom was very adamant, I think, about me having…getting a mastectomy. You know, ‘cause like I said, I do think her second experience with breast cancer has left her a little bit scarred, like, rightfully so. And so she was like, “Well, okay, like, you have this mutation. So you’re gonna have surgery, right?” And I was like, I mean, I’m pretty sure that’s, like, where I’m leaning but I want to talk to some surgeons about it first, and she was like, “No”, like, “If there’s anything you can do to, you know, prevent getting breast cancer, like, you need to do it”.
And it was interesting because my… my best friend from college who is also a doctor – she does pediatrics and internal medicine. She said the same thing. Like I called her after I got the results and she’s like, “You know, I hope you’re going to have the surgery”. Like, “I see patients at the hospital, I used to see patients during my residency, who, you know, had a mutation and didn’t do anything about it and then they get cancer, and sometimes it’s really advanced and, like, nobody wants to lose you”. And I was like, Alright, alright, alright. Like, this is… a lot. *chuckles* So, but yeah. So it was – those conversations were like, really emotional. And they will say, probably the most emotional conversations I have are my mom. My mom blamed herself. You know, my best friend who I think because she’s a doctor had some first hand experience with it. And then my friend from law school, the one who lost his mom to breast cancer, we went to dinner, because I was like, Oh, I need to, like, talk to you about something I want to tell you, like, in person. He got, like, almost, like…almost started crying at the table. And I was like, There’s nothing to cry about, like, I’m going to be okay. Like, I have a really great team, it’s gonna be fine. But yeah, I didn’t realize, like, how emotionally, like, hard it was going to be to like, share this news with everybody. And for like, my close friends I told all of them individually. And I swear, if I ever get, like, a cancer diagnosis, like knock on wood I don’t, like, people are just getting a mass email. [Jodi-Ann: chuckles] Like, I don’t have…like, I don’t got it. Like, I… like I… I feel very strongly about that. *laughs*
Jodi-Ann: You know, let me tell you something. Okay – I feel that so hard, because the telling and retelling and retelling… And for me, as a storyteller, right? I want to present it, like, in the same way *chuckles* every single time with the emotions or whatever. And then after a little bit of this, I fired up MailChimp, and designed a newsletter and sent it out to people. I’d say, Hey, if you want to get updates on what’s going on with me – and I named my tumor Ted – so I was like, If you want some Ted updates, you got to subscribe to this newsletter. And I would just send a newsletter out. *laughs* Which was a nice project to distract myself because then I was, like, designing newsletters. *laughs* Instead of worrying about, Am I going to die or be paralyzed for the rest of my life?
Erika: Well, you know, in a way, it’s funny, you know, it’s funny, though. When you were saying the storytelling – I think the thing that’s fascinating to me, and maybe we can get more deep into this, is like, the people who document every part of their mastectomy journey on Instagram…’cause like, you know, they’re tight. Like it’s interesting ‘cause I do all this writing and people are like, “Erika, you know, if you try hard enough, you could probably like, build a brand.” And I’m like, You guys, I’m, like, at the office, and they’re about to like, give me a transvaginal ultrasound to look at my ovaries. Like, I’m not trying to take a picture and give anybody, like, a thoughtful caption. Like, I’m stressed. I gotta have that wand poked up there so they can take pictures of my ovaries. Like, no one is like, trying to be an IG influencer in that moment. But there are people who do it. And I guess I admire it. But I’m just like, I don’t – again – I don’t have the bandwidth. I’m just trying to like, get my blood drawn, get my ovaries photographed, like, keep it-keep it pushing. [Jodi-Ann: Yeah.] So…
Jodi-Ann: I’m being probed right now, I can’t figure out what the top hashtags are for this situation. *laughs*
Erika: Yeah, right. You know, [in facetious tone] when I get probed, I love to be probed by like, this brand manufacturer, of like, you know, transvaginal ultrasound wands. Right? Like that – it’s like, it’s crazy. But it is a thing. It’s a thing that exists. And so I mean, we could probably have a whole other…you could probably have a podcast about, like capitalism and cancer. *laughs* [Jodi-Ann: Oh-oh yeah.] Right? Like modifications. Like…anyway, it’s a lot.
Jodi-Ann: The commodification of cancer – for real. Um, and okay, so you speak a lot about your writings, and I have to fangirl on you for a moment. But, in a lot of my research and things that I was trying to figure out – ‘cause I also went trying to search the internet for something, you know, related to this – some type of support. And I’m sure it’s there, like they do exist. But again, you know, Black women, *exhales* people of color, women of color should not have to reach the deepest corners of the internet to find some relevance of our experience. I think that, you know, cancer information for us should be populated as easily as a Wikipedia page. ‘Cause you’re already going through such a stressful situation. I can’t spend two hours researching, trying to figure out if anyone is out here experiencing this, like me, or in some way. You know, who has these shared experiences, because then every search that comes up short, is an affirmation that I’m alone. [Erika: Yeah.] And that feels like shit. *laughs* And so, as I was going through this process…before, during and after my situation, I found this article that you wrote for Oprah Magazine, The Article That Could Help Save a Black Women’s Life. I have read this. I have texted this to my doctors. I cite this all the time. I-it’s a big part of my orientation to this because it finally unlocked for me everything that I had been thinking around about this from my own personal experience, perspective and the system of racism in healthcare.
And..then I met you. *laughs* [Erika: Yeahh.] I was like, Whoa, wait, what? *laughs* And so we had met and like, been in communication for some other stuff. And it took awhile for me to connect that you wrote this article that I’ve read, like 15 times. And so in it, and I was revisiting it in preparation for this, you speak a lot, even in your own stoic storytelling here, about folks that you would talk to about this and-and you’re speaking of it unlocked even more resources for you. And so I’m curious if you want to share a little bit more about – not only just the testing journey and communicating that with people – but sharing the results with other people.
Erika: Yeah, no, I mean, it kind of goes back to, you know, a thing I – in my work – that I kind of struggle with, not struggle, but I…I don’t like to do things if I’m not being impactful. And the thing that I do struggle with around this work is…because when we are talking about educating people about, like, genetics, family history – it’s not really about whether you’re smart, it’s also about like, what I like to call “medical literacy” right? Like, you can have a PhD or a JD or MBA, but you might not be like, medically literate and medically fluent. Which is all – it’s like, you gotta-you gotta like, know how to talk to doctors and ask for the right information. And that’s the thing that I-I have been extraordinarily lucky to have for a few reasons. You know, my grandmother is actually a nurse. And like, in my family, like everyone who ever had medical questions or wants to know about, like, information they got from the doctor, like, everyone went to my grandmother. And so I grew up my whole life seeing that. And my grandmother was always like – even when I was a kid – always used to tell me like, “Just because they are the doctor does not always mean that they are right. Like, you ask whatever questions you want to ask, you get, like, whatever information you want to get.” So…I’m feeling fortunate that that was instilled in me like…I mean I remember, like, going to the doctor as a child, and my grandma, my grandma would be like, “It’s okay for you to ask questions even though your child.” [Jodi-Ann: Yeah]
But even so, but so as I said, you know, my-my best friend’s a doctor, and she’s actually married to a cancer researcher. Specifically, he does bio-biostatistics. So what happens is like, people do the very complicated research projects, and then they go to [insert name of friend’s husband], and they’re like, “We have to figure out, like, how to actually statistically measure this.” And [insert name] comes up with very, like complicated data sets. It’s very impressive. Like when he was getting his PhD, he like, showed me some of his homework. And I was like, I have no idea like, what this is. This is amazing. And he’s actually worked on pancreatic cancer research projects at UNC.
So the two of them-both of them are like, “Look, these are the things, when you go to these particular appointments – like, don’t leave until they tell you this. Or you feel comfortable about this.” Right? And that’s, again, like I built up a lot of medical literacy and fluency during my like, sort of surgical process.
And I was also fortunate because I had a really good friend who was “funemployed” at the time. [Jodi-Ann: chuckles] And so I would be like, “Oh, will you go to these appointments with me, ‘cause there is gonna be, like, so much information. It’s probably going to be overwhelming.” And it was like, so great to have another person just there as like, backup with me. And I actually, *laughs* I remember the day I interviewed my plastic surgeon – and my plastic surgeon is very good. If you’re listening to this, and you’re in New York, Mihye Choi. She does-she gets good results. [Jodi-Ann: laughs] So my friend – she does, she’s great – so my friend Courtney went with me. You know, I had already, like, heard really good things about Dr. Choi. We like, we’re in the room, you know, she, like, looks, you know, she does her examination. And she’s like, “Yeah, like you’re at a 32 C now. I’ll keep you at a 32 C if that’s what you want. Your skin is really good. I can do a direct implant, which means your implants. I’ll do nipple sparing.” She was like, “I’m going to get a great result for you.” And I was like, “Alright, cool. I like you. Let’s do this.” And Courtney was like, “Wait a minute,I have more questions.” She, like, asked her all these questions. [Jodi-Ann: laughs] She’s like, “You know, I’m not gonna let just anybody operate on my friend.” And the – Dr. Choi was like, “Look, I was the Chief resident at Mount Sinai for plastic surgery. I can show you my results book – like, I got it.” Right? And to this day when I go see her for like, the occasional check, she’s like, “How’s your friend Courtney?” I was like, “My friend Courtney is very good.”
But you know, I was very lucky. I had a lot of people who just cared. [Jodi-Ann: Yeah.] And so I didn’t have to do it, you know, by myself. But yes, telling other people just opened up so…I mean, even getting-even finding Dr. Julia Smith who like, coordinated all of the various parts of my treatment, like – that came through a friend, right? [Jodi-Ann: Yeah] I get so much from just not moving through this in isolation.
Well, so let’s talk about the Oprah piece for a little bit because this is something I only realized recently. The woman I’m talking about, Julia Smith, is an oncologist and oncologists can also get board certified to do genetic testing. So she did my genetic testing, she gave me the results. When she gave me the results, she was like, “Based on your family history, you should have a risk-preventative mastectomy as soon as possible.” So she was like, “I’m gonna use, I’m gonna send you to this surgeon, this plastic surgeon, this OBGYN who specializes in you know, high risk patients. Here’s your dermatologist, here’s everything you need. And if you get pushback from anyone, or you can’t get an appointment, you just call – like you call my office and I will make it happen.” And I was like, “Okay.” Right? So my whole sort of experience with NYU, like, at my various appointments…I felt like I was operating with a lot of privilege, you know, because I think people knew I was Julia’s patient. But when I actually had my surgery, which is at NYU hospital – I write about this in the magazine piece – I knew from my mom’s experience, from talking to people, that my biggest risk after mastectomy was like one of the drains getting infected.
So what happens is, after the surgery, you have these two plastic drains that are pretty far up – right – in your body. And they stay there for about a week. In the day I was supposed to be discharged, one of them was not working. Like, I could see that there was like, no flow happening on one side. And so when they came to discharge me, I was like, “Well, I don’t want to be discharged until you send a nurse or someone else to like, look at this. I don’t want to go home until it’s sorted out.” And they’re like, “It’s fine. You’ll just have to sort of like manually pump it on that side.” And I was like, “I’m not doing that.” [Jodi-Ann: Not doing that.] And I was like, “Why can’t you just call someone to come look at it?” It took – Jodi – it took two hours. We had a two hour standoff. It was my mom, myself and two of my friends that I called to the hospital for backup. [Jodi-Ann: You called a backup person. *laughs*] I did ‘cause I was like – look, my surgery was-it had been late at night. I was exhausted and didn’t sleep well. My mom had stayed with me. And so I like, call – at first I had called a male friend of mine to just like…I live in a one floor walk up and I was like, “Hey, like, just come meet us. Like, you know, just in case like, I have issues getting into the apartment.” He’s like, “Fine.” Oh, he was like, “Yeah, of course.” I mean, he didn’t say “fine”. He was very happy to do it. [Jodi-Ann: Okay. *laughs*] But then when I saw that these nurses were tripping, I texted my friend Courtney and I was like, Courtney, we’re at the hospital. There’s some shenanigans. Will you, like, come for backup? That’s literally what I said. I was like, There’s shenanigans. Please come from backup. I’m soo tired. [Jodi-Ann: Yeah. *laughs*] But we had this standoff and they like, sent someone from the hospital administration. And I was like, “Why can’t someone just call someone?” And finally at one point, I think, you know, I’m like, still kind of groggy from anesthesia. I said to my mom, I was like, “Mom just call Dr. Choi’s office and see what they say.” Right? Because no one at the hospital called them. I was like, “Just call her and see what she says.” And she’d responded in like, two minutes. And she was like, “Yeah, look, I can’t physically come to the hospital. But tell the hospital to pay for a CAT for you and send it to my office so I can see what’s going on.” And I was like, “Okay.”
And of course, when I got there, she like, looks at it. And she’s like, “Oh, yeah, the incision here isn’t big enough for this to flow properly.” It took her five minutes to fix it and then I was on my way. But I was like, Why did it take two hours – two hours of me fighting with these people, when I was trying to do something to prevent a major complication? And so I kind of like, in that moment, when I’m looking back on it, I was like, Oh, I had been operating through most of NYU with a lot of privilege, because people knew that I was a patient of this important person. But when I got to the hospital, I was probably just another Black woman [Jodi-Ann: Yeah.] that people thought that they could sort of just like, be dismissive of. Right? And I should have filed a complaint against NYU. And then I was just tired…from after having surgery. And so I didn’t do it. But like, that experience has just really stayed with me because I’m like-I’m trying to do something that benefits everybody in the room – like me, the patient, the hospital – so that I don’t have to sue for malpractice. And it was literally something that took five minutes, and I’m just like, this is insane. [Jodi-Ann: Yeah.] ‘Cause that happens all the time.
Jodi-Ann: It happens all the time. And it’s so funny when you’re saying “I wish I filed a suit but I was too tired” and I think of all the data points that don’t exist because people aren’t filing it because they’re having to deal with surviving and—and recovering from you know, what they went through. Ughhh. You know, when I went through my experience too, the first person I called…someone who’s highly medically literate: my friend who’s a nurse practitioner. And the second person that I called – I mean – the last person I called was my mom for the same reasons you’re talking about, like, How do you tell your mom that this is what you’re going through? But the second person I called was my friend who’s a radiologist. And not only was he trying to help me understand my-my results of the MRI, but he was telling me how to carry myself in the doctor’s office when I met with the surgeons. And he’s like, “You need to bring people with you, not only to just support [me], but you have to show the doctors that there’s a whole team of people who care about you. You have a Master’s in Public Health. Do the research and speak in a health-type, medical language. You have to figure out: How do I compensate for my Blackness right now? How do I become important to these people to have them feel like, not only do people care about you, but she has resources to, you know, sue me for malpractice or what have you.” And then here goes you, who has all of that, and you’re a lawyer, and you’re still having to deal with, as you say, the shenanigans.
Erika: I know you were talking about you fangirling my writing, which I really appreciate it. And so I’m gonna fangirl, somebody else. Tressie has this amazing book of essays called Thick [Jodi-Ann: Yes.] And one of the essays is called Dying To Be Competent. Like, I actually read it recently, ‘cause there was, it was relevant, it was on my mind. And so this is an essay about when, she, like, had, she went into premature labor. She’d been in premature labor for three days. But like, none of her doctors were like, taking her complaint seriously. And so she just talks about how like, Black women are always fighting to be viewed as, like, competent, and like worthy to be heard. And she sort of wraps it around like that story. And it’s just like, it’s so good. And she just talks about how, like, when you look at the American healthcare complex, and you combine that with capitalism, right, like, when that—when that those systems like, go into motion, Black women are just almost always doomed right, like the system is sort of just designed to never view us as competent and to always eat us up. I think about that essay a lot. I think about that situation a lot. Um, yeah. Because in that moment, you know, ‘cause sometimes I also wonder, like, when I say I was tired, I was too tired to file a complaint. But there’s also part of me that’s like, you know what? I could have easily been like, I had the surgery, I still got anesthesia in my system. I just want to go home and I don’t want to keep fighting. But you know, like, what would’ve happened, right? It’s scary to think that our lives can sometimes just be impacted by like, these limbs that we, like, can’t control. Sorry, I know, they got really deep, but, like-
Jodi-Ann: No, no I just I—you’re saying this, and it’s recalling for me all the times starting this particular journey that I had to say out loud, “I’m tired of fighting, I just want to go home, and I just want to take care of myself.” And a lot of times, I still had to fight anyway. First of all, I’m fighting with my own health and my own body, and I’m fighting the structure, and you can’t do it all the time. And then I resent the fact that I have to do it. But for me to be a good ancestor, you know, I tried to leave this shitty system better than how I entered it in some type of way. You know?
Erika: Well I—one of the things that I do, I do a lot of fundraising and like speaking and advocacy for this research center called the Ambassador Center for BRCA. It’s the first ever Research Center and where all they research is BRCA-related cancers. So the woman who runs it, Dr. Susan Domcheck, who is amazing, and one of the smartest people I’ve ever met, right, like, I mean, she is one of the foremost experts on BRCA in the United States. [Jodi-Ann: Yeah.] And so sometimes people are like, “Oh, are you, you know, are you afraid that you might get ovarian cancer someday?” And then like, yeah, I guess, but I was like, “If I got it, I’d just like, go to the Ambassador Center and have like, Susan, treat me, right?” The only reason I know, Dr. Domcheck, the only reason I connected with the Ambassador Center, is also like a luck of the draw, like someone there saw something I wrote one time and like, reached out to me. And so it’s like this weird thing of like, Wow, like, if something bad happened to me, I would have access to some of the best doctors in the world. But I had to hustle so hard and create my own luck to be able to get that, and some people just have it. Right? And, like, I think about all the work that Black women have to do to build protective systems for ourselves as, like, a safety net.
Jodi-Ann: Yeah. And so in that vein of, you know, thinking about all the work to, even for you, somebody who had to earn some of these privileges, to create an ecosystem that could support you, create your own luck, as you say, you know, for folks out there who are thinking about genetic testing, or maybe are on the fence, or say, “Maybe I’ll push it off later after this COVID thing is done”. Right? Well, what would you say around pursuing genetic testing, particularly during the context of COVID-19?
Erika: I do know that many institutions have actually moved to doing genetic counseling via telemedicine. So that-that is a possibility. If people are worried, if you’re worried about going to an in person visit, you can access genetic counseling via telemedicine. I think what happens is like, you know, you actually have the whole length discussion on your family history, and then they can send you the actual testing kit. So, um, and there’s like research that genetic counseling via telemedicine is just as effective and impactful as when you have it in person. So that’s something that I would encourage people to think about.
I think the thing I hear all the time from people is they’re just like, “I don’t want to get genetic testing because I don’t want to have a mastectomy”. And I’m like, what I have to explain to people is like, It’s not automatic. Like, in my situation, my family history warranted having a mastectomy pretty quickly. But I have other friends who have BRCA mutations who, you know, they just do enhanced surveillance, they get a mammogram or MRI every six months. I know some people who take chemo-preventative drugs, they take Tamoxifen. So I think it’s important, you know, to go back and have a conversation about, like, Chadwick Boseman and preventative care. It’s really important to have the information, because at least if you have the information, you can like, figure out what you want to do, right? Like you’re not operating in a vacuum. And it doesn’t really just impact you. I mean, I don’t have siblings. You know, in some families, like, once you find someone who has a mutation, then you can start tracing forward, you can trace back, you can like, figure out, like, how many people are impacted.
So the thing I think I would really encourage people like, You’re in quarantine. You’re home. Have a conversation with your family about cancers that have occurred. Do it. And, like, on both sides of the family. Right? It can be inherited from your mother or your father. [Jodi-Ann: Yeah.] And then, yeah, and if you go to the website nsgc.org, National Society of Genetic Counselors, you can put in your zip code, and it will help you to find genetic counselors in your area.
I think, you know, I encourage people to, like, you know, still do it. Even now, like, you know, it’s just information that is so important. And I also think it’s really important to—to your point, right, like—you know, one thing that did give me comfort was like, okay, like, If I have a mastectomy, at least I’m having it now. I’m not battling cancer, I’m not dealing with chemo and all this other stuff. Right? Like, you know, I can do it on my own time, I can, like, give myself time to get like, super healthy. So there’s all—I don’t want to say there’s a control element. But you know, particularly given all the things that we’re up against. I think having that information sort of like, helps you to like, take more control.
Jodi-Ann: Absolutely. You can take more control, and you’re putting yourself in a position where you have more options.
Erika: Yeah, I think the thing I also hear from people, too, is like, “Oh, well, I’ve already had cancer. So like, I don’t need to look into this”. But the thing I really want people to understand is that like, if you are diagnosed with cancer, it’s still super relevant to get genetic testing, because they might have to do a different type of chemo for you…there might be different treatment options – particularly with somebody with ovarian cancer. The ovarian cancers linked to BRCA mutations – they have, like, specialized therapies and treatments that they do for those patients. Right? But if you don’t know, you’re not going to get access to those things. Right? So, and I think, particularly to, you know, for Black people, we know that when we are diagnosed with cancer, it’s often caught at like a much later stage when it’s harder to treat. And so at least if you know you’re at a higher risk, the goal would be either you can take preventative steps, like I did – having a mastectomy really drops your risk down. Or, at least if you do get cancer, it would be caught at stage one when it’s very treatable.
Jodi-Ann: Yeah. Oh yeah. That’s real. Okay, so you already gave us a recommendation around the book Thick by Tressie McMillan Cottom. That I’m looking at right now on my shelf that I have not opened ‘cause I have a habit of buying books that I want to read, but I’m doing more of the buying than the reading. *laughs*
Erika: It’s like, it’s really, it’s really good. Like I sometimes like, Oh, sorry. So like, I don’t know if you saw this whole thing with this woman Jessica Krug, this like white woman professor who was pretending to be Afro-Latina?
Jodi-Ann: Oh, is it the Rachel Dolezal part two situation?
Erika: It’s Rachel Dolezal part two. But one of the essays in Thick is about the Rachel Dolezal situation. So I was re-reading it at, like, the doctor today, like, you know—why does a white woman want to pretend to be us?
Jodi-Ann: I wanna see you try to pretend to be us in a doctor’s office when you need people to believe you. You know? [Erika: Right.] Try that out. *laughs*
Erika: Yeah, put—put that mask on then.
Jodi-Ann: Yeah, exactly. Anyway, um, okay. So I want to end with some listener recommendations for folks.
Jodi-Ann: Name someone that you think our listeners should know. Something they should read. If you have any other recommendations besides Thick. And something that they should listen to.
Erika: Someone that they should know that is a good question. Um, can I recommend two people really quickly ‘cause I’m very proud of them?
Jodi-Ann: Hell yes!
Erika: Someone whose, like, career and work ethic I really strive to emulate is my friend Eve L. Ewing. Eve, like, does everything. She’s from Chicago. She has a PhD from Harvard University. Her work—she’s now a sociologist at University of Chicago, and her work focuses on educational inequality. She has a really great book called Ghosts in the School Yard, which is all about the impact of school closings in Chicago, like on specific Black neighborhoods. She also writes for Marvel. She wrote Ironheart for Marvel. I think she’s working on something for TV. [Jodi-Ann: Hell yeah.] Like, she is just like, so creative and disciplined. And I’m always like, “How do you do all this stuff?” And she’s like, “Well, the secret is, I’m only doing one of those things at one time, right?” Like, you know – [Jodi-Ann: Okay.] I’m like, “Alright.” She’s like, “Look when I’m working on stuff for Marvel, I’m not working on all the other stuff. When I’m working on my academic stuff, I’m not doing Marvel”. And I’m like, okay. Um, so she, and she was actually recently in the special edition of Vanity Fair that Ta-Nehisi Coates just guest edited. She has a really great essay about police unions and how they blocked police reform.
And my other person who I think people should know is also my friend Josie Duffy Rice. She is the president of The Appeal. Josie is really a leading voice and scholar around police reform, police abolition. She also had an essay in the Vanity Fair about what—what are we really talking about, we talk about, like, police abolition. And one of the things I really admire about Josie is that like, I’ve known her I think since 2014, 2015. And she was really one of those people like, who was very early thinking about the impact of prosecutors, the impact of District Attorneys on how you have a more progressive criminal justice system. So those are my two people. I think people should know if you don’t know them.
In terms of books: so, a lot of people probably know Min Jin Lee because she has this really great book Pachinko, but her book before Pachinko, which is called Free Food for Millionaires, is one of my favorite books, like, ever. And Min Jin is, like, a Georgetown Law graduate, just like me, who transitioned and is now doing cool stuff. But Free Food for Millionaires. If you like Pachinko I think you would also like Free Food for Millionaires. Everybody should read that. It’s very good. That’s what I got.
Jodi-Ann: I got that book recently after reading Pachinko. And then – ‘cause it’s the inside times now, right? There’s so many different events. And so I was in this event where surprisingly, there were maybe 20 people in the room. I’m like, “Are y’all wild? Do you know who this is? It’s Min Jin Lee!” And I was able to talk to her like, over Zoom. [Erika: Oh, wow. I’m very jealous.] And so after, after I was on the call with her, before the event was over. I went and purchased Free Food for Millionaires ‘cause most people who were on the call were talking about Free Food for Millionaires and not Pachinko. I was like, “I’m missing out. I need to go back”. *laughs*
Erika: Yeah, um wait, I’m gonna cheat. So, the other thing I think you should be aware of is not a book. Um, it’s actually – Eve put me on to this. So I really like sparkling water and I used to be a Spindrift person. And she put me onto this brand called Sanzo. [Jodi-Ann: Uh huh.] So it’s like the first Asian-inspired sparkling water brand. Like they have flavors like lychee and mango. It’s so good and you text to order. So like, anytime you need to re-up you just text. Like, literally, the last time I ordered I texted “need to re-up two cases” or whatever. *laughs* And it came in like five hours [Jodi-Ann: laughs] to my house like in a black van. But the water is very good. The water like itself is very good. And then kind of how you order it is kind of cool. [Jodi-Ann: Yeah.] So I saw she posted on IG and I was like, “Oh, I’m gonna try it,” and I’m—I’m really hooked on it.
But the thing people should listen to – I feel like I’m talking about Tressie a lot – but she’s also in North Carolina. A lot of people are from North Carolina. She has a podcast with Roxane Gay called Here to Slay. [Jodi-Ann: I’ve listened to it. So good.] I just started the episode that they did about Kamala’s VP nomination. I’m really excited. They just also did an essay, I’m sorry an episode, about the importance of Black people protecting their intellectual property that I’m very excited about. And the other two podcasts you should listen to, I would recommend Black Men Can’t Jump [In Hollywood]. It’s these three Black guys and they review movies with leading Black actors. It’s great. And then they no longer make the episodes but the archives are up, I think. It’s called Denzel Washington Is The Greatest Actor Of All Time Period with W. Kamau Bell and Kevin Avery. It’s like so – I really wish – I mean like they’re both doing other cool things, I get why they don’t do the podcast anymore. But that podcast was so good. And they were starting to do these interviews with like, you know, they did one with Jesse Williams, they did one like, Sterling K. Brown. They had one with Ryan Coogler. Actually I might go listen to the Ryan Coogler one, ‘cause of Chadwick but that podcast is great. You should listen to all those podcasts. You inside, you ain’t got nothing else to do. *laughs* [Jodi-Ann: That’s real.] You just in yo’ house.
Jodi-Ann: That’s real. Well, yeah, for sure. I feel bad now, because you listed all these books that I actually have within arm’s distance from where I’m sitting right now. And I haven’t read any of them. And so thank you so much for your recommendations. And thank you so much for being here. And this, this has been incredible. Thank you.
Erika: Thank you for having me on. Like you said, you know, we met because the city bars I’m gonna talk about racism against women of color, like, but I’m so glad I met you. *chuckles*
Jodi-Ann: Yeah, no, that’s helpful. I talk about our initial meeting a lot, because I knew I was going to be on a call with all women of color, and I sat in my chair, and was like, I’m gonna do my hair during this call. [Erika: *laughs* That’s real.] And, and to know that I was around women of color that I didn’t really know, because I just met you in that context, and that I knew that I could still feel seen and be myself and just have that break in the meetings of the day where I can just be Jodi-Ann, the person, in addition to Jodi-Ann, who is going to show up professionally, in this way to moderate this panel with these incredible, incredible women, um, that that meant the world to me. I talk about it all the time. I was like, “Yo, I got up on a zoom call with these people. I even know like, yeah, I’m gonna do my hair.” *laughs*
Erika: Yeah, well, you know, no one has been interested in publishing it, so whatever. [Jodi-Ann: Uh-huh.] But like a story, I know, I’m like, Why doesn’t anyone wanna take this? A story I really want to write is, um, I read this book earlier this year, it’s called You Don’t Look Like a Lawyer, which is all about the experience of Black women in law firms. And one of the things she talks about is this idea of the inclusion tax. And the inclusion tax is like mostly the emotional and actual financial burden that Black women have to pay to be in like, predominantly white spaces. And so like what you’re talking about, right, the fact that you had a space you come to and be like, oh, I don’t have to pay the toll, like I can just be me is so important. I think people don’t think about all the contortions that we have to do, like, before we actually do our job. [Jodi-Ann: Yeah.] I’m working, like, three jobs in my job because I have to do my job and be palatable to you. And like, sort of the mental impact of it.
Jodi-Ann: Exactly. My job. The work to show up for you. And me having to deal with my level of integrity of the fact that I have to change myself to be in these spaces. *laugh sigh*
Erika: Yeah, so, you know.
Jodi-Ann: Yeah. So let’s see if Rachel Dolezal. And Rachel Dolezal Part Two want to be doing that shit for 20 years?
Erika: Well, it’s something I keep thinking, I can’t stop thinking about is, um, this goes, goes back to Tressie. We were talking about some ideas for like pieces. And she said something to me, she was like,
[Warning signal sound starts, continuously plays in background]
Jodi-Ann, as host: Pardon the interruption. What follows is an amazing conversation, Erika recounted having with Tressie, about Black women and work. Eric and I talked about a new framework for understanding Black feminism. The conversation was so good. But I’m protecting the intellectual property here to give space for Erika, Tressie, and me, and me to create something with these ideas. Call me Erika and Tressie. Let’s talk about writing. Now back for our regularly scheduled program.
[Warning signal sound ends]
Erika: Like, every once in a while, I’ll be like, Damn Black women, always workin’. *chuckles*
Jodi-Ann: And can I-just speaking back to the cancer thing? We internalize this too. Right? Of needing to be productive, keep working, not taking that time, potentially. And you-when you and I had first spoken about this, you didn’t take as much time as you should have, in your view.
Erika: Yeah, I mean, so when I had, I had a preventative mastectomy on December one. And I took a month off of work, you know, right? Because I think there were a couple of things going on. Part of me was like, Oh, I want people to know that, like, I’m back and I’m healthy. And this thing didn’t like, break me, right? I need to just return to normalcy. I was like, forcing myself to return to normalcy. So I went back to work after a month, which again, in hindsight, I’m like, that was crazy. I should have taken like, two months, three months to deal emotionally with everything that was going on. And that’s advice that I give people. I’m like, look, if you have to take some savings out or like whatever you need to do, like, you gotta give yourself that time to heal and process from it.
Yeah. I went back to work after like, four weeks. And like physically, that was fine. But mentally it was not fine. I didn’t want people to think anything was off. I was like, yeah, look at me, had a mastectomy and I’m still going. [Jodi-Ann: Yeah.] It was not healthy.
Jodi-Ann: What-what was that like, mental draw for you? ‘Cause I could easily hear someone say – which I’m, I’m even annoyed to even repeat this right? – “But, girl you didn’t have cancer. Ummm, and you had this great plastic surgeon for your mastectomy. What is the mental toll? You’re good.
Erika: Oh no, that happened. I actually, when I was like really first starting to write I did write about that right? It was, like, March so I had my surgery in December, and I was like, – I don’t think they do it anymore. – So in New York – this is like a cool new york thing – on Sunday nights the Standard Hotel used to have bingo, but bingo wouldn’t start until 11 o’clock at night. And they would serve these giant champagne punch bowls. [Jodi-Ann: Yeah.] And the reservations sell out in like five minutes. But I-I managed to get one. It was, I don’t know why, but it was very important to me to be like, “We are going to bingo at the Standard Hotel. We gon’ get drunk, we’ll have a good time.” [Jodi-Ann: chuckles] Which we did. *chuckles* I don’t know why it was so important to me.
And so like during this, like, while we’re there, obviously, I’ve, like, had a bunch of champagne punch. And I’m like, “Oh, you know, guys, I’m just like, celebrating, I’m alive. I got through the surgery.”
And everybody’s like, “What are you talking about like, you were not like, at risk of dying. Stop being dramatic.”
And I’m like, “No, but it felt dramatic.”
Like, you know, and so yeah. It’s hard. And you know, I will say there are people in my life that I’m friends with who I felt like, they’re… The whole situation created some real space. Because, you know, I think when you’re 29 it’s not, it’s not usual to think about like, cancer or dyin or like, major health issues, right? Like, it’s, those are rare for people our age to have gone through. And so it does create a little bit of separation between you and other people of like, Oh, you haven’t gone through something like this. And then I started doing all the activism and stuff too. And it’s kind of like, you know, some of my friends were just like, not in that place when they were 31, but I was. So it can be kind of lonely [Jodi-Ann: Yeah.] sometimes. Right?
Like, you know, now I have a really great group. I kind of put the group together myself, which is all women of color who have BRCA mutations. And of the five of us, four of us are actually lawyers, right. But that is literally, I assembled it. People would reach out to me when, like, they saw stuff I wrote, I was like, “Wait, we all live in New York. Let’s like, start having brunch together.” [Jodi-Ann: Yeah.] So I have a support system. But I had to build it.
But yeah, and sorry, that was a long rambling way of saying yes. Or people doing, ”You’re having like, a boob job.” And it’s like, “No, that’s not it either.” Um, so yeah, that’s the other reason I like to write and talk about this stuff a lot is to demystify it for other people. To be like, “Look, if you have a friend going through this, this is how you can actually be supportive. Don’t say, don’t say dumb things like it’s a, ‘it’s a boob job.’” *laughs*
Jodi-Ann: I like that you just rambled on about that ‘cause it’s something that I was just talking to my therapist about yesterday, ‘cause it’s something even two years out that I’m still wrestling with, ‘cause I had a really strong group of friends who, when I had my diagnosis were like, “Alright, let’s go.” And I had so many people around me. I had a huge potluck party at my friend’s place the day before I left Seattle to go to New York, ‘cause I had my surgery at Sloan. And I documented everything, not in the way that you’re talking about, but I um, I would post videos of me in my walking process, like how I learned how to walk.
And so it was public [Erika: Wow.] in the sense of, “Oh, she’s not just like… she’s still in the hospital.” You know what I’m saying? *chuckles* Like, there’s things going on. And so it was less around wanting to be an influencer and more so around wanting to normalize what was happening for me in this really isolated space for my community. Right? [Erika: Yeah.] And it kept me from needing to tell 10 people how tough it was to realize that today, I-I realized that I couldn’t write. I couldn’t even write my own name. Right? [Erika: Wow.]
And so documenting all this, I came back to Seattle way earlier than I should have, six weeks after my surgery, to the point where I came back in a wheelchair. And had a co-worker – so not even my closest friend, but like a co-worker who I was very good friends with – pick me up and go through that whole thing.
Not one person – and sometimes I look at, I could literally probably print out this photo that we took at my friend’s place for the potluck and put x’s on every single person because no one that was present for that party – texted me, visited me, emailed me, called me, asked me if I needed help. No one. [Erika: Sighs]
I felt like people didn’t want to be around me or people who were around me, like you’re saying, they’re just not in the same space where you are mentally in terms of how you’re understanding your body and, and life. Like, I can’t talk to you about some dude that I swiped on when I’m still trying to figure out how to be. You know what I’m saying, like, I care about different things now. I have to focus on different things now.
And it took maybe a year and a half, close to two years for me to then decide that people aren’t trash. And maybe I can rebuild a circle, once I started speaking more openly about it and trying to find folks who aligned with my life experience in some way. And so a lot of people who I spend time with, very intimate time with, are folks who had some big medical trauma in their lives in some way. And that feels like a more psychologically safe social network to be around as I’m still rebuilding and, and wanting to take my social world in a different direction.
Erika: Yeah, no, I 100% understand that, right? And I’m kind of like you, like, I got to a point where I was like, Oh, it’s not that my friends are trash, because they’re not trash. I think for whatever reason, people think, people think friendships are not like, a-are not like romantic relationships, right? But the truth is, much like romantic relationships, sometimes people just grow apart, your relationship evolves.
And that’s something I talked about extensively in therapy too, right? Because it’s like, Am I a bad person? Am I trying to be morally superior because I like, you know, had this experience and now I write and do fundraising with it. And my therapist was like, “No. Maybe just … You’re just not the same person.”
I think one thing that was really important and healing overall was being like, you know, what, you’re never going to go back to being normal. The person you were before all this, like, you know, kind of symbolically is gone and dead. Right? And you have to figure out who you are after, after this experience. Right? And that’s okay. Like, you don’t have to try to keep holding on to this person you were before.
[Jodi-Ann: Yeah.] But yeah, I sort of sometimes feel like, okay I symbolically, you know, died in the surgery. And this is the new person that I am. And that comes with new relationships.
Jodi-Ann: Yeah, like this one.
Erika: Yeah, exactly! *laughs*
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Jodi-Ann, as host: Black Cancer is created, edited and produced by me, Jodi-Ann Burey. Thank you so much, Erika, for sharing your story. To make sure that Black cancer stories like this one come center to how we talk about cancer, rate, subscribe, and most importantly, leave a review. You can find us online at blackcancer.co, and on Instagram at @_black_cancer. Trauma comes with endless wisdom for ourselves and those around this. Tell someone you know about Black Cancer.
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