Episode 7: The Malignancy of Both (with Frantz Berthaud)

The Black Cancer Podcast

Episode 7: The Malignancy of Both (with Frantz Berthaud)

Transcribed by: Kisa Nishimoto, Eryn Strong, Hannah Rosentreter, Gina Marioni and Sonia Montejano

Running time: 88:00

Frantz: With my sister’s passing, I’ve not relinquished my proxy role. My job was to make decisions about her life when she couldn’t speak for herself. She cannot speak for herself now because she’s no longer here. So I will continue making decisions that will illuminate her life to the rest of the world. That will fight for people whose lives were like hers.

[Theme music fades in] 

Jodi-Ann (as host): Welcome to Black Cancer. I’m your host Jodi-Ann. Our guest on today’s episode is Frantz Berthaud, who found his professional life as an Administrative Director at the Dana-Farber Cancer Institute, and his personal life collide. This episode is titled “The Malignancy of Both” because Frantz and I discussed the malignancy of racism, and what our worlds could look like if we attacked it with the level of rigor we do cancer. We also talk about his journey with his sister’s triple negative breast cancer, its malignancy, and the tools she sent for him to change the course of cancer for other women of color like her…like me. Just like the other episodes this season, we’ve recorded this interview during the COVID-19 pandemic. This becomes our entry point into talking about racism in the workplace, and in our healthcare system. Here’s my conversation with Frantz.

[Theme music fades out] 

Jodi-Ann: You look professional. 

Frantz: ‘Cause I got glasses?

Jodi-Ann: Like wearing things that have buttons. And then you have a layer.

Frantz: Oh, but I got like basketball shorts on. Well, no, I put the layer on ‘cause I was cold.

Jodi-Ann: Ohh, okay, okay. 

Frantz: Yeah, this is function, not fashion. [Jodi-Ann: Okay.] *both laugh*

Jodi-Ann: That’s the expectation for your job? Like, you can’t just show up in your pajama tops?

Frantz: How – You know, this is – this is a very interesting thing, right? ‘Cause, like, you really come to understand how fake [Jodi-Ann laughs] how fake work-life is. In the sense of like, you’re gonna do the same work if you showed up in sweatpants than you did in a suit. And you know, that-that’s jarring for me ‘cause I, prior to being at home in terms of, you know what, Covid, I was in a suit everyday. And, you know, I had this in my mind as a little kid. Like, I want to be in an important job where I’m wearing a suit. And not quote, unquote.  *chuckle*

Jodi-Ann: Yeah, that’s – I had that too and then, then I was a personal trainer for two years. And I’m like, Oh, spandex is cool.

Frantz: Yeah, you know. Like, and now, athleisure. You know what I mean? *laughs*

Jodi-Ann: You know, there are a lot of companies that are going full-time remote [Frantz: Right.] because their workforce is so productive, they’re not seeing a disruption. And it could be, you know, now they’re at home. Or it could be that they’re all wearing pajama pants.*laughs*

Frantz: It is the – A lot of people calling it like the Zoom mullet. Where on top, you know, like you look like me, you got a little button down. You got a sherpa on. [Jodi-Ann: Mmhmm.] You know, I’m cute! [Jodi-Ann laughs] And then, you know, below sea-level, we out here got Nike basketball shorts. And you know, like, you’d be lucky if I put lotion on my… I put lotion on my legs. 

Jodi-Ann: I know, but you can’t [Frantz: But it, just like] do that for the culture.

Frantz: *chuckle* I like how I’ll just say I do things for the culture and people like you can’t just the things that you’re supposed to do. Do it for the culture, but um, it kind of shakes it up for me, so I’m like yo, what happens when we go back? Like, am I gonna feel some type of way when I put on a suit? Like, also, is it gonna fit after the quarantine-15? [Jodi-Ann: Hello.] So, I don’t know.

Jodi-Ann: I will say this, if I had a job to go back to *both laugh*

Frantz: I don’t know if you’re laughing or crying. 

Jodi-Ann: Oh, I’m good. I was dying to leave my job. But I was thinking…if I had to go back, like, how challenging that would be for me physically. Because-because of my spinal cord injury, I have a bunch of neurological symptoms all over my body. And to be like, shoulders bare, back bare, not having things touch me, feels so good. *laughs* Like wearing clothes ever since my surgery was always uncomfortable. Because any little thing was just – it was so bad. I think I’ve had to give away, you know, a lot of t-shirts and stuff now because if the fabric isn’t right, it just doesn’t touch my body well. And all I can think about is how much pain I’m in. And so I think about being home and how that could be a benefit for folks who have, you know, a myriad of disabilities, [Frantz: Yeah.] and how it’s just like freed them mentally. Like, I actually can focus more on my work, because I don’t have to be in this thing that’s so uncomfortable, or try to perform ableness, you know. And a lot of different ways that just takes up so much mental space. *laughs*

Frantz: That’s the thing, it’s like less about “Why home is so comfortable?” and more “Why is being at work so uncomfortable?” You know, right now, diversity, inclusion, equity people, “We want you to show up to work as you are. We want you  to show it to her as your full self.” I’m like, No, you don’t. *chuckles* [Jodi-Ann: No, you don’t! *chuckles*] No you don’t, but this is the thing is, we’re not actually allowed to fully show up as ourselves. Because human beings, we are flawed. [Jodi-Ann: Ooh, yeah.] 

And they don’t want that part. So it’s like, I want you to show up, wear this suit, wear this, this is the uniform, whether it is explicitly stated or not. You look across, you know what everyone else is wearing, like, Okay, this is how I’m supposed to dress. This is how I’m supposed to show up. This is the verbal cues that all like, you know. And to your point, that-that is exhausting. [Jodi-Ann: Yeah.] Because you are not being yourself, or talking. You know, people are at work, maybe 40 hours a week, I think a lot of people are working more than they have prior to. Trying to delineate between your work day and your rest a day is super hard. And so, even like you’re home, and then you’re feeling like, you gotta show up. [Jodi-Ann chuckles]

I asked somebody else, I’m like, Yo, I’m home. [Jodi-Ann: Yup.] Again, I’m wearing basketball shorts, I am home.

Jodi-Ann: It’s an interesting concept too. Because when you think about showing up as your full self, which, spoiler alert, this is literally what my TED talk is about. I’m doing TEDx Seattle, and this is – [Frantz: I know, I follow.] Okay, so shut up. *laughs* This is literally the topic of my talk, where I’m just like You say this, but you don’t actually want this. So, yeah I’m not doing that until you get your shit together –  is essentially what 15 minutes of my time is saying. But when we think about these standards, and just normativity of professionalism, your normative professionalism is actually whiteness. And so, how does that work for folks of color who more so than white people get this message of “We want you to be yourself.” But you definitely don’t want that for me, in particularly as a person of color. And so, it’s-it’s just super challenging to figure out then how do you comport yourself, right?

And I was chatting with my friend who talked about “What does it feel like when white supremacy enters your house?” [Frantz: Hmm.] Through these Zoom things, because – And I felt that when I was doing my application process for TED. There’s this section where you have to pitch like a whole, the whole TED team. And suddenly, for the first time ever, on my screen, it’s like 20, white people,

Frantz: And you’re like, “Wait a second, I didn’t choose y’all to be here.”

Jodi-Ann: *laughs* Yes! And then as you’re saying, like you are emotionally, your chemical state is changing in a space of rest. In the space where you’re supposed to be yourself. But you are putting on this costume, this armor, this performance, what have you, in order to show up in these Zoom calls. And so, after I get off some of these calls, my space feels different. [Frantz: Right.] *chuckles* So my friend’s like, I need to burn sage. *both laugh* [Frantz: Hah, right.] Just clear the energy.

Frantz: I’m the opposite. I just moved. I’m – every, every hour after every meeting, I just moved to a different house. Like it’s – [Jodi-Ann: Yeah, just – I gotta go. *chuckles*] Man, you know, you really touched on like, it’s real. The fact that it’s the – And I asked this question a lot about everything we do at Dana-Farber. And really in many aspects of my life, where someone says, like, “Well, this is…” you know “this is how we do …” whatever, whatever. And then I always ask them, like, “What is its orientation?” [Other person: What do you mean?] I’m like, “What is the starting point? What is it based off of? ‘Cause if you say, “We’re doing X, Y, Z…” I’m like, “Yo, what is X? Because if X is white, I don’t want to do Y and Z. [Jodi-Ann chuckles] I want to talk about how we went from A to X. And X is where we’re starting from and that is has always been what I try to get people to kind of apply and then just conversations we have on like, just think about, like what we’re starting from.” 

And you know, we talk about ableism or like someone’s, like “This is-this is the front door of how you enter the building.” I’m like, “Where’s the ramp?” [Other person: Oh, it’s on the back of the building.] I’m like, “How are we oriented to the, to the live space, the living world around us, the people, the language, how we show up to work. Like, what is it all based from? Because if it is based in whiteness, which more like, I don’t know what – I’m gonna throw out a stat that’s probably accurate 99.9% sure that if it’s, it’s based on whiteness, that’s like a, it’s a faulty existence. It’s not real. It’s very real, and it’s a very, perhaps accurate for a small subset of people, and everyone else has to bend and break to fit into that mold. So you could comport yourself in the way in which we’ve decided is how we should operate, from here on out.

Jodi-Ann: This relates exactly to the conversation I was just having this morning with my trainer around cancer screenings and data for when people should be screened. [Frantz: Mmhmm.] If how you determine when you get screened for colon cancer, when you get screened for breast cancer, etc, if all of that starts in whiteness, right, because people of color are not part of the data set that led you to develop the protocols and the norms of what age you should be when you start getting screen for this, then you’re missing huge chunks of people, right?

Frantz: Facts. There is this story, and I might not be getting accurate…So, Gleevec. Gleevec is-is – it’s used in multiple myeloma, which is a blood cancer. It’s been one of the biggest successes and all of like cancer treatment. People like, yo “Gleevec! Gleevec!” It’s hot like Gleevec mixtapes, like, Gleevec is [Jodi-Ann: It’s like K2!] *both laugh* You know, right? Even just the one. 

And so, but when they were developing the drug and all of the trials and like, the data that they got, like, yo, it’s so successful. And then, they tried it on, I think I – it might have been in Japan, I know it was considering, like, “Well, how does it show up in the Asian population?” And then it’s like, well, it doesn’t work. And it’s like, well, because all of ya data, the reason why it’s so successful, it’s incredible. But all of the data was based in whiteness. And it’s like, what are we talking about now, when we’re saying something successful? When we say a person is successful? When we say a drug is successful? When we say a company is successful? I’m like, What is that measurement? What’s the metric for success? Who said this was what it was?

In like, what did that person look like? Like, please tell me. 

And again, 99.9% of the time, it’s gonna be this white guy. [Jodi-Ann: Yes.] This is the definition of success. This is the rate in which, you know, if this drug works in a population, this is what we’re going to say is successful. And it brings us to this point of not being represented in so many aspects of life. And when it comes to cancer, I’m like, I can’t mince words, and say, like, everybody has to be part of the conversation. Because cancer most certainly doesn’t care what you look like. It don’t care what your mama’s name is. It don’t care who ya ancestors are. It’s just the sheer fact that people will talk about cancer disparities. And they’ll base it in race. And, you know, I push the conversation that “We’re not talking about race, we’ll talk about racism.” because your race does not determine if you have cancer or not. Or – but, but racism will determine if you die from it faster than someone else that doesn’t look like you.

Jodi-Ann: I was chatting with a friend the other day, and I love her and she’s like, into this work, woman of color, check check, check. [Frantz: You have a checklist to be your friend. *chuckles*] Yeah, check, check, check, check. So if you say something a little off the cuff…You know, errr, I’m not mad at her ‘cause she checked, you know? [Frantz: Yeah.] We were talking about Trump and COVID and Herman Cain. And she said, “Well, you know, Herman Cain, he had a pre-existing condition.” 

And in my mind, I know what-where she’s going, but um, I was already irritated. So I wasn’t tolerating it. *chuckles* Right? I’m like, I know this girl does not have access as medical history. “So what’s his pre existing condition?” And she’s like, “He’s Black.” And I’m like, “Being an…” I was getting upset, but my checklist was temporing me. *chuckles* [Frantz: Right.]  Being Black is not a pre-existing condition. Racism is the pre-existing condition. And a lot of times, even when we’re being flippant about things, we always miss the system. [Frantz: Yes.] We always miss the structure that creates this. And that only perpetuates, you know, the problem and our inability to solve it. Or resistance to solve it, structurally.

Frantz: Right. This is, this is great. Because it reminds me of like, in the last chapters, if people have read, and I’m sure you’ve read Ibram X. Kendi’s How to be an Antiracist. Like that, within the last like few paragraphs, like he is talking about his cancer diagnosis, right? And I’m like, if someone wasn’t keen enough to figure out when is he talking about cancer, and when

is he talking about racism? Because the malignancy of both is so apparent. It’s the same way when you’re talking about screening. Who gets to determine when something is racist or not? Right? And it’s how people feel like, oftentimes racism is like this, the capital R word right now.

You call somebody racist?  And they’re like, I can’t believe –[Jodi-Ann laughs] it’s like, you shot their mama. It’s like, “I can’t believe…” Right? I said, “Are you sure what we’re talking about the same thing?” It’s like, no, this is-it’s it is here. And like cancer, whether we want to acknowledge it or not, and the symptoms are there of cancer or the symptoms are there racism, and all the signs are like-it’s pointing to it, yet, we don’t want to take the proper assessment, or, and whatever that may look like, if it’s an organization or it’s a person, like that helps you to diagnose, you know, that there is, in fact, the disease there. And you and you probably already have a feeling, you know, it’s been in your family, like, “Oh, my God, am I racist? My granddaddy was racist.” [Jodi-Ann laughs] It’s like, you know, you might be racist. It’s in your cells. But yet, we don’t take those proper precautions to think about and do the work of like, “Alright, I need to find out for sure.” You know? “Let me do my history.” 

We talk about it from a healthcare standpoint. We literally call it a history. We don’t say like, “Tell me about your family.” It’s like, no — your history. I wanna know about yours. I want to know about your family’s. If people could apply that same thinking so — because they, I think people more or less understand cancer, and they are willing to use language like “battle”, we want to fight cancer, we want to do whatever we got to do to conquer cancer. And I’m like, the enemy might look very different, but the same type of language and that-that zeal and that fervor, whether it’s at my own organization, or really any organization or just across society, we’re very comfortable with our hatred for cancer. You know, but we’re very comfortable with not talking about racism or hatred for racism.

And I think like, no one ever blames a person who’s—who’s dealt with cancer, for their cancer, you know, to be like, “Yeah, this is your fault.” And so I think about racism and the way in which it is embedded in society and within people’s families, historical context. It’s like, there’s therapy for this, there’s systemic therapy, there is surgical resection, you know, like the analogies like, there are ways to figure out how to rid your life of it, but it’s going to be this ongoing battle, it’s not just a one-off, and you never think about it, you never deal with it again. And that—that is, you know, the—the cancer of our society is like, we gotta—we need the chemo for it. We need the immunotherapy for it. And we need to constantly at every turn, think about how do we find a cure for it and not just, well, let me do this one thing that’s going to look at this one particular part without me diagnosing or even scanning to figure out like, is it anywhere else in my body? You know, I don’t know that. People got ribbons [Jodi-Ann laughs] and they’ll do walks and marches like when it comes to cancer. And I’m like, “Yes, people.” You know, it’s touched my life significantly as well. But imagine the intersectionality of you are Black and you’ve battled cancer. I’m — look, it’s gonna be Black Lives Matter. And we’re going to have some pink ribbons. You know, like we—we have to — there has to be space to figure out both. I think that’s something that I kind of struggle with is that that fork in the road of how do we fight what might feel like two big monsters? Do you have energy to fight both?

Jodi-Ann: I mean you have to — right? Because the way our society treats cancer is it’s the thing that everyone’s always trying to avoid. “I don’t want to live here because environmentally, it’s polluted, it’ll you know, give me cancer. If I drink this water, it’s going to give me cancer. If I drink too much coffee it’s going to give me cancer. If I stand in front of microwave, it gives me cancer.” All these small little decisions, every little part of your day, there’s some study, some video, some something out there, pop science or real science around, you know, “this will help you reduce your cancer risk” — in a lot of silly ways, but in some real ways, too. And so I wonder what our society would look like if we treated racism the same way: “Okay, I can’t do this, I’m gonna be racist *laughs*, I can’t do this.” And every–every little thing of like, you know what our own behaviors are, but also our influence on systems. If we try to think of all these micro moments in our lives of ways that we can always be striving towards racial equity in the same way that we’re always striving for a life free of cancer. 

And the part that trips me up to about Ibram X. Kendi’s book is he wrote that book because he thought he was dying. And I wonder why Black people have to die or be afraid of dying or facing death for people to know the truth. 

*pause*

Frantz: Let me sit with that real quick. What? That’s a big because a lot of people over generations have died, whether we’re talking racism, whether we’re talking cancer, they don’t believe us. They don’t believe us.

*breathes out audibly*

You have this generational trauma, this—this, you know, one of the family heirloom we pass is oppression and exhaustion. It’s like you’re gonna get both, because this is what I went through, and I gotta prepare you to go through it as well. You know, you’ve got, you know, cameras on cell phones, that’s capturing things and they still don’t believe us, when we show them. They like, “Is that Photoshop?” I’m like, “yo, you really just saw, like, this person getting murdered,” and even showing them and constantly showing them in and then they become desensitized. You know, there is this, like, there’s a balance almost, and it’s delicate, where we have the attention of society, we’re like, “yo, we got to show you this, it may be painful, but we need to show you this.” They like, “wow, this is terrible.” You’re seeing it cyclically, over and over and over again. And they’re like, “wow, that’s so bad. I don’t want to look at it anymore.” And then it’s like, “I just don’t want to look anymore.” And then they forget it exists. And I’m not sure. I’m honestly not sure what it will take to be believed, to be believed whether it’s we’re screaming at the top of our lungs that Black lives matter. Where you have Black women in hospitals receiving less pain medication because they don’t believe or they believe that Black people have a higher threshold of pain. 

And it’s like, what is all of this based in? The historical context? What is being passed down from generation to generation in medical school teachings? And that, like, people like, “Oh, this is what I — yeah, this makes sense.” You know, it’s like, yeah, we—you know, and, um, for kidney function tests, we always factor in for: “Is the patient Black? Okay, you’re gonna need to multiply by bup-bup.” I’m like, what? 

Jodi-Ann: Oh, shit! I’m scared.

Frantz: No, the thing is, it’s so wild that there are so many things that we do in medicine, that are based in like, faulty medicine that was done during the enslavement of Africans or that we’ve just carried on like — it, for me. I think those particular things, it’s, like, no one ever goes back to like, double check. You know, they know I’m like, yeah, nobody doing a word check on this, though. I think it’s — I feel like we-we were talking in circles, whether we’re talking like what are the beginning points of everything, medical education, any tests that are being done? What is it oriented in? And if it’s based on lies, like you better believe that everything from that point on was inaccurate…was inaccurate. And that’s wild to say. Wild.

Jodi-Ann: And that’s exactly what you’re talking about. Like, if we’re doing XYZ, what is your X? And then also, what happened at A [Frantz laughs] because you’re carrying those, we’re carrying those things through? Double check your work, man. *both laugh*

Frantz: It’s just so wild because I think that like, for all intents and purposes, we internalize some of this stuff, too, you know. Yes, I think all Black women are strong. Do I think they have some superhuman strength? That means they shouldn’t get pain medication, as you know their white counterpart? No! This is what we’re talking about — people do this. You know, you have Black women dying at alarming rates from Black childbirth. What are we talking about here? I think there’s like this, all of these like moments. And you I think it comes from micro moments, right? All of these things are happening. It’s like if you step back and took that 30,000 foot view and said, like, Yo, what are we actually talking about here? There’s a lot of murmuring. And we need to have an understanding what the resounding conversation is, so that we can shift it because if we’re not making the appropriate changes in these pockets, whether it’s cancer care, disparities, or, you know, you were touching on environmental racism, like your living space, where you live — If we’re not talking about all of these things, and how they’re all aligned, and then figuring out what are we going to do about it, then what are we actually talking about?

Jodi-Ann: And what-what are we actually talking about? Because even when I think about, you know, the strong Black woman thing, and that’s something I struggle with, and I do a lot of thinking and writing about is it’s just an excuse. It’s just the avenue to not give us something because you could use these stereotypes, actually, to help us. If you say, “Hey, Black women experience less pain,” that could be turned in if your Black female patient is coming into your office, and you ask her on a scale of 1 to 10, “How much does this hurt?” and she tells you a three, it’s probably a seven. And so maybe you need to rethink your approach because her self-reporting of her pain level might be different than someone who doesn’t have not only lived experiences, but a historical and ancestral trauma of having to overcome pain.

Frantz: And like you. People ask like, “Well, how do we? Jodi-Ann, how do we combat that?” and I’m like, “Yo, imagine if that Black woman comes into her appointment. And it is another Black woman sitting across from her.” And like we talk about this in calling a cultural concordance, right? Between the patient and the caregiver or the clinician. They could look like you, they could speak the same language, like there is a shared understanding. And there is this opening up between the patient and the provider in a way that I think what white privilege does, if a predominant number of the clinicians are white, you don’t have to think about it. You don’t have to think about it. You walk in, you’re like, “Oh, hey, boom, boom. Here we go.” But when you’re a person of color, if you speak Spanish as your primary language, and you’re like,

“How am I going to communicate with this person?” So that they understand, because — Not just like, “Oh, do you hear me? Are you listening? Do you understand, do you comprehend?” Even reading between the lines and understanding how we care across different cultures. You know, what I’m saying and how the information might be conveyed to you and why I have my granddaughter in the room with me or why I have this particular person. Why did I bring 14 people with me for this appointment? I’m like, we are oriented in different ways by the varying cultures that we have. And so we can expect our patients to do this kind of — conform to, like, “well, I, I want you to show up, only one person can show up with you.” I’m like, I’m sorry, I run with a whole crew of family and that’s how we’re-we’re doing it. 

And, you know, I’ve spoken to you in the past about my sister and as my sister was going through her cancer treatment, I was at every appointment, my brother in law was at the appointment, if my other sister was able to come — Like, this is what we do. This the, the-the pain, the successes, everything is communal. We share it all, so that when something really good happens for you, it happens for all of us, when something really bad happens to you, we share in that burden, we shoulder that pain, so you don’t have to do it by yourself. And I think, like, we have to, like, switch our approach and how we care for our patients, and think like that. You’re-that’s equity. People will talk about, like, we gotta treat everyone the same. Like, you absolutely do not. [Jodi-Ann laughs] You do not treat everybody the same. Because that’s not fair. [Jodi-Ann: Yup.] It’s inequitable. 

Perhaps, perhaps it is actually fair, right? Everybody gets a dollar, you know, like, great. If I’m at negative zero, and someone is at 1000 — negative zero’s not even a real number. I promise I went to college, you know, you know, I was there.

Jodi-Ann: *laughs* I know, I know, you was there. 

Frantz: But if someone is starting with $1,000 in their pocket, you give them $1, it’s nothing. You give me $1 it’s really nothing, because I’m not like—I need a lot more to, you know, to help me. And I think that whether it’s socioeconomic status and the needs of our patients, it’s a cultural needs, like, what do they actually—what do they actually need, and the only way to get there is to understand what they need from them on your own internal knowledge. Liike, we need people that look like them, that speak their languages, all of these things. And, I don’t know, I might be getting a little bit impassioned, because I struggle with sometimes organizational approaches for culturally competent care, or you know, or what a lot of literature say now, it’s like cultural humility. It’s like — Do I want you to know my culture? Like, yeah, I think that could be-that could be valuable. Do I want you to be humble enough to know what you don’t know, let me lead conversations, let me help you, and understand how to care for me? I’m like, that’s real. If we showed up with that humility in-in most of our patient and, honestly, human interactions, like the world might be a little bit better.

Jodi-Ann: Yeah, I hear that. Even structurally how we set up our medical spaces in whiteness — I also roll deep, I roll deep to every appointment. I went to an MRI, which is a very singular experience. *laughs*

Frantz: You tried to bring someone into the machine with you.*both laugh*

Jodi-Ann: No, actually-actually — I did have someone in the machine room with me. She also had to get wanded and get in scrubs. And she sat there reading a book and kind of stroking my foot the whole time, because I was-I had a really bad MRI-MRI experience prior to that. But I would roll deep, easily with five people in the waiting room for me to just go do an MRI. 

But I was thinking more when I went to do all my surgery consultations, when you’re in those rooms, it’s just set up as a, you’re in an exam room. And so when you have seven people trying to roll up in a room that’s only set up for the doctor and a patient, it becomes an extravaganza of nurses and stuff trying to-trying to find chairs. Like just imagine if you had a room where you knew you’re gonna have these conversations with patients, and there was a bench. 

Frantz: You know.

Jodi-Ann: Like, oh, you see me. Like you were-you understand that people—that people roll deep. But anyway, I was super excited to have this conversation with you because the nuances and the complexities and the orientations to cancer are just so vast. And I think, you know, having a personal experience, and also coming from the public health space is something that we both share. You’re deep into cancer stuff way more than I am. And I did not get this when we were both at Boston College, and I didn’t get it until very recently that your whole career has been in public health and specifically in cancer. Right? 

Frantz: Right. 

Jodi-Ann: How did that happen?

Frantz: Going from-from college, and having done tons of classes and, like, pre med route and thinking I’m going to be a doctor. Haitian mother, like, “You’re gonna be a doctor, lawyer, or I’m going to live with you for the rest of your life.” I’m like, ooh, I can’t-I can’t have the third option. So let’s figure out the first two. [Jodi-Ann laughs] And so definitely like okay, I’m going to be a doctor and go down that route and upon graduating and doing clinical research at the Dana-Farber Cancer Institute in bone marrow transplant,and thinking that this is going to help me have this robust application like, this is going to be incredible. And I knew I loved healthcare, and I knew it’d be even more meaningful being a Black man in the healthcare space. 

And my thought was, I’m going to do that as-as a doctor, as a, as a clinician. And I really started gaining more of an affinity of, Well, how do we transform the systems? And it was more about efficiency and how we did things in the hospital space. And I love that I’m like, Okay, what if we did this? What are the downstream effects? What if we change this, okay? Like, Now we’re cooking, let’s do this. You know, and-and galvanizing people to make these changes and transformations. And I loved that piece. And so I started to think about, Alright, so if what I love about healthcare, and my thought process, and this vision of being a doctor was I can impact and affect so many lives, you know, maybe in the span of a year I might be impacting, you know, a few hundred lives. That’s…that’s amazing. And then I was like, Well, if I was running the hospital, not only am I creating the environment for those doctors, nurses, and PAs, kind of all the clinicians, to do that miracle work and care for those, each of them hundreds of patients. But anyone who walks into this building, any patient that walks within this space, like, I can transform their lives in a way that I think would be so impactful. And so just from a numbers perspective, I was like, I’ll take the thousands over the few hundreds. 

And so I really started going down that road to becoming a healthcare administrator. And specifically, going into public health, because people say, “Well, you could have got your MBA in healthcare”, like, “You could have got your MHA in health care”. I was like, Ahh, but public health is how I am oriented to the world, right? Again, we’re talking, like, communal. So I’m like, How can we have the greatest good for the greatest amount of people? This is the – this is back in, you know, BC I was a double major in philosophy – biology was one major – philosophy was the other. We talked about utilitarianism. And it’s this idea of the greatest good for the greatest amount of people. And I’m like, That’s what public health is honestly all about. Because you’re making these systemic changes, like these big things, because you’re thinking about changing the health of populations, the health of the public. And that’s not just instantaneous, we’re talking, we have the potential to change generational health. 

And the more and more I’ve thought about that, and as my career has gone on, thinking about my Blackness in healthcare – and I’ve stayed in the cancer space because of personal experiences – one of my best friends battled cancer and unfortunately, succumbed to cancer, and Darlene was, I’m forgetting, maybe 23, died of osteosarcoma. And so at a very young age, even in my career, as I was progressing, I’m like, Okay, I see the impact that this particular disease has on people. Like, you know, she’s a young Dominican woman, I’m like, Okay, what does her community – How did they approach her cancer diagnosis and how she received care? How did she think about herself? How did she bring herself to her appointments and how she battled it? And so I kind of stayed with it because I saw the-the need for someone like myself to be part of it. Like, Okay, I figured out what weapon I’m really good at wielding. And now I’ve found the fight that I think I can have an impact in, I can contribute in. I’m like, Alright, so let’s go! So over the years, I’ve just been sharpening my sword, you know, like, how do I impact cancer at-at an organizational level? We can, we can go nationally and talk about health policy. Like, I don’t think there’s a ceiling to how we can truly impact cancer and for me specifically, of people of color who are battling cancer, I will not, like, that is what I’m focused on. That’s what I’m passionate about. And the way equity works, it’s tide rising. No matter what we do for people of color in their cancer battles, it will benefit everyone in their cancer battles.

Jodi-Ann: It’s a sense of like, the ceiling is stunted if you do not center the stories and experiences and the needs of people of color in your community, it’s not going to happen. In a separate space, when I talk about the racial gender pay gap, it’s like how can all women get equal pay if we don’t think about Latinx women making 53 cents on the dollar for a white dude? Mathematically, it’s impossible, right? *laughs* You cannot get the gender pay equity, if you do not specifically address the gender pay gap for Latinx women, period. And so it’s like, how can we get to cancer innovation? How can we think about cancer as a community experience or, you know, how to adjust that if we do not center the people who are disproportionately impacted by it, dying from it, getting caught later from it, etc.

Frantz: It’s like, if people understood – ‘cause they apply the same principle to many aspects of their life, where they call it the weakest link, right, in the sense that you’re only as strong as your weakest link. So we’re only as equitable as our most inequitable aspect of whatever it is, whether it’s gender pay equity, cancer care, equity, or disparities, I go all the way to the bottom and say, like, Okay, you know, who is here? Who is in the bottom of the cast? Now, how do we raise it for them, so they can get somewhere near the top? Because anyone who’s in the middle is going to benefit. And if people only saw it like that, instead of saying, we have this finite pie, and if we slice it this way for you, that’s less for everyone else. I’m like, No, there is enough for everyone. We can feed everybody. You just got to think about the pie in a different way.

Jodi-Ann: Yeah, I’ve been thinking about the pie in a different way, and also having a people-forward approach. Like, Who are these people who are impacted, and what does that look like?, is I think connected to having people-forward approach, is thinking about language and how we talk about cancer patients and the labels and all of that. And so I’m curious what your thoughts are on, you know, calling someone a cancer patient versus what I’ve heard, a patient with cancer.

Frantz: It’s, this is big for me. I think language is one of our most powerful, you know – it could, it could build, it could destroy – like, language is huge. And I often look at it in almost considering how do people call themselves, like, how do they – how are they oriented to their condition? Because cancer is something that they are going through, right? And, you know, we people talk about, “It’s not a homeless person, it’s someone who’s experiencing homelessness”, right? The hope in when we’re talking about cancer is there might be a point when they are without cancer. So if we are using this verbiage of like, “This is a cancer patient”, like, the hope is that’s not the case, they are a patient with cancer, because also they could have a slew of other things. And I think it doesn’t do enough of pulling in the kind of varying aspects of people’s humanity. I don’t want to relegate them to, “This condition is who they are” versus “Who they are, and they also happen to have this condition, hopefully at the moment”. [Jodi-Ann: Yeah.] So I think it’s big. It might seem like this finite point, because you’re looking at a sentence, and it’s just moving a few words, but I think it speaks volumes when we’re talking about actual people here.

Jodi-Ann: Yeah, I remember when I was struggling, I would just say, I’m disabled, I’m disabled. And I just like, in a very negative sense, but this internalized ableism – you know, my family and friends, like, “No, you just can’t do this right now”, or, “You have a disability”, and not needing to, I don’t want to say tie it to my identity because it is a part of my identity, but I was using it to put myself down. That language shift of, I just can’t do this right now, or thinking about my body and with more compassion, and not with labels that, you know, have been used to disenfranchise people and marginalize people, I think is super important. 

Another label I’ve struggled with is calling myself a survivor. I think because of my particular experience, I don’t think that I’ve survived cancer itself. But I’m surviving this ongoing recovery of my spinal cord injury, which is the result of the surgery, which took out the tumor in my spinal cord, right. And so if we’re talking about surviving, I feel like we’re talking about a battle. *chuckles* And the battle for me, as somebody who had surgery and not chemotherapy was with the recovery process. I mean, I didn’t have any role in the surgery, I was asleep. *laughs* I didn’t do anything. *both laugh* It was everything after, and so, you know, I find people who project labels onto me like, “Oh, you’re cancer survivor”, and I feel like a fraud in that a little bit. Because, you know, as you’re talking about how people describe themselves, and how important that, you know, self identification is, I don’t feel that. But as like, entering into this cancer space, and you’re in this cancer space a lot, I’m curious, you know, what you think about that? And, you know, particularly as you think about the cancer survivor versus cancer thriver distinction, like, there are a lot of different labels for folks who had cancer and no longer have it anymore.

Frantz: And I think about this one a lot, you know, because I’ve shared with you, my sister after her, you know, 13th month battle with triple negative breast cancer, you know, and I say succumbed, you know, to the disease. And, you know, when you when you read obituaries, they’ll always say, “Morva Hilaire was survived by…”, and they’ll say, like, and list all of these family members, it almost innately creates this survivor’s guilt, because someone has told you, someone had in written form, and this is the format, basically, for every obituary, I’m like, Who wrote this? *laughs* Like where, what is [Jodi-Ann: Why do we use this language?] Yeah. [Jodi-Ann: Yeah!] *both laugh* Who wrote this? But to say, like, “Are survived by this”, and I’m like, Oh my goodness, because you’re telling me this is what, this is what survival feels like for me, and I’m-I’m in pain on-on a daily basis, right, emotionally, of missing this-this person that was, that was such, you know, beyond that this-this important figure in my life. And so when people might describe themselves as survivors, and again, self identification, I’ll never tell anyone who they could or could not be or how they see themselves, because I think that’s one of the most beautiful things about humanity. But I think there’s this element of, so what do you call people who did not, quote unquote, survive or win their battle? We don’t have those words. And that’s the thing is, when you think about the spectrum of life, when you – we do such a bad job of talking about death, and it’s something that I’ve tried, I’m actively trying to be better about. And my sister passed away three years ago, and I can’t hear certain songs without crying, right? Like, this is – and this is – this is my survival right now. I’m like, I almost feel like this, you know, “Morva Hilaire is existed by…”, and like, because we’re, we’re existing now. I don’t feel like I’ve survived, I feel like a piece of me has died. And so what do we call the person who did not make it to the other side of-of their cancer diagnosis, and we don’t have that language. And so I think about that-that power of language of, we name things a certain way, and we don’t think about the other people that are not part of the narrative, because they can’t speak for themselves. [Jodi-Ann: Yeah.] They can’t self identify.

Jodi-Ann: I’m really struggling with that, now, as you’re saying it, because we have this fighter language around cancer and this “battle, fighting, cancer warrior, etc.” And so if you succumb to it, as you say, does that mean you lost? Then are you a war? [Frantz: Are you a “loser”?] Exactly! Exactly. And no, no. And so why don’t we have a robustness of language for-for folks who, you know, in your words, succumbed to cancer. Why not? And that’s why I think it-it can make it hard to talk about them because it’s so hard to even say, you know, that someone died.

Frantz: Right. Right. It is, it’s very hard to, to, to say those-those words. And, and yeah, and there’s no language for-for us, the folks who are left to collect the pieces of our hearts and make something of the rest of our lives, right? And my sister was the best thing this world would have ever experienced. You know, my daughter is three years old, and their-their crossroads of life, the beginning of life, and the end of another was a mere few months, you know, my sister passed away in July, and my daughter was born on that September. I think what brings me a sense of comfort in being the survived, if you will, or the existed or, or being the ones that are-that are here is this feeling as if there was some sort of, like they dapped each other up? The-the you know, the two celestial escalators, and they’re like, Oh, are you going to where I think you’re going? Oh, will you bring back this message for me? [Jodi-Ann: Yeah.] You know, if you-if you ever have family members that find out you’re going back to like – this is very immigrant culture – back to your home country, “Okay, take this back, take this back”. I’m like, “You said 17 suitcases”. [Jodi-Ann: laughs] I’m like, They’re not gonna let me on the plane with this. And so I kind of, I think about it in the same way that, you know, my sister spoke to Maya, and was like, “I’m gonna need you to take these things back because I think people are looking for them, and they’ll need this.” And equipped her with a little bit of that magic that helps. It selfishly helps me make it through every day. And I honestly – I have to believe. [Jodi-Ann: Yeah.] That’s-that’s the case. And I’m someone who operates on hope. And that’s-that’s what we operate on as an organization at the Dana-Farber. Because if you don’t have that, passed that I’m not sure, like, what else is the motivation? What else can you do?

Jodi-Ann: Yeah. Yeah, so I’m Jamaican, and I remember growing up, anytime we would go to Jamaica, my mom, there would be like a whole three week extravaganza of packing a barrel.

Frantz: *laughs* Yes, I know exactly!

Jodi-Ann: Okay, so you know.

Frantz: Hatian culture, we call it a doumes. *both chuckle*

Jodi-Ann: Oh, I loved packing the barrel. I literally saw them put a kitchen sink in the barrel like, literally, there was a kitchen sink in the barrel. And so, [Frantz: Stop it.] *laughs* I swear to God. *both laugh*

Frantz: So that saying, they say like, “Everything but the kitchen sink.” They’re like, “No, actually, that can fit in there, too.” *both chuckle*

Jodi-Ann: Oh my gosh. It’s so funny that anytime my Auntie Lorna was in New York, they’re like, “Yo, we got to send a barrel.” Because Auntie Lorna could pack the barrel. Like, when that kitchen sink was in the barrel, Auntie Lorna packed that barrel. And my job was always to sit on it so she could close it, ‘cause of course, you know, you got to overstuff it, right. [Frantz: Right, right.] *both laugh*

I remember asking my Mom, “Why do we have to do this?” I didn’t understand. ‘Cause when I go to Jamaica, their houses are bigger than ours. *chuckles* I don’t understand why they have to send so much stuff. And then really having that conversation of: our family is across many, many different countries. And we all have a responsibility to each other to share information, to share things, to share our resources. And so I just think about your sister, when your daughter was coming down like, “Yo, I’m about to send a barrel.” *both laugh*

Frantz: It’s real! like I-it… That’s amazing. [Jodi-Ann: still laughing] I love that. That’s so comforting. And it’s, I genuinely, I feel that. [Jodi-Ann: Yeah.] She gave her elements and pieces of her and said like, “Carry this, because there are people that are missing this piece, and they need this.”

Jodi-Ann: So, what would you tell your daughter about your sister?

Frantz: So I thought about – I’ve been thinking about this a lot. I think about it every day to the point that in what used to be the office and now is the toy room ‘cause that’s what happens when you have a kid, the like, “Yeah, imma need this room.” [Jodi-Ann: chuckles] I have this large painting of my sister. It was a gift from-from my wife, Nora, and my sister-in-law, because it’s something that I knew I wanted, I was like, “I, I need a visual cue.”

And the likeness, right, the painting. It’s beautiful. And it’s my sister smiling. And it’s from this photograph of – we were in the cafeteria at the Dana-Farber Cancer Institute, in between, like, she had an exam appointment and was waiting to go to her chemo appointment. And we didn’t want to wait in the waiting room. I was like, “Let’s go have lunch.” So we sat in, the sun rays were coming in, she had her head wrap. I was like, “Oh, let me get this photo of you real quick. *both chuckle* The way that-you look like Nia Long.” [Jodi-Ann: laughs]

I took a photo of her and it’s just, it’s beautiful. And for me, that’s one of these, the last memories of seeing her smiling and feeling like she was in control of her body, ‘cause I think that’s one thing about cancer is, you feel like you’re losing control of your own body. And so I took this photo, she loved it, I loved it. And this really dope artist, Artmando, out in Colorado, painted it. And so it’s, it’s large. And, Amaya interacts with the painting, will say hi to it sometimes, talks to it. And I’m like, for me, I’m like, that’s so beautiful. Because, yeah, I can show you a bunch of cell phone videos, I can show you these photos. I was like, but she gets the opportunity to see my sister in the way that she looked to me. Radiant, full of color, smiling. And just being able to do that on a consistent basis. So I can say, Oh, it’s a visual cue for me, Let me tell you this story about this one time, you know? Let me tell you this, let me tell you this.

And, you know, recently, not too far from the painting, we have the broom that Nora and I, we jumped over at our wedding. And you know, now that she’s getting-gained a bit more sense of the world she’s like, “Why is it a broom up there, it makes no sense. You tell me it has to go in the closet, this is a-a place for everything.” And then I got to explain, [Jodi-Ann: It’s for the culture, it’s for the culture, it’s fine.] It is absolutely full of culture. *chuckles*

But I got to explain the significance of the broom itself and to say, like, “You know who made this for us?” And then boom, it’s another story about my sister. And so for her, she’s starting to see these alignments of my life and these milestones in my life and how integral my sister’s presence was in all of those. And for her, I think it makes it that more significant of who my sister was, not only to me, but to every aspect of who I am today. And like, that’s the most important thing I can do is you know, we talk about ancestral lineage. And it’s like, you know, griots of passing stories down. When we don’t have them written down, when we don’t have that person here, we get to pass those on to our loved ones. And that’s what, that’s what I get to do.

Jodi-Ann: Yeah. And I want to chat more about your sister. She’s such a big part of your life. Cancer had been such a big part of your professional life. So you know, when we’re talking about breast cancer, even finding that, it’s a very personal experience. And so, when did you become part of her story? How does she tell you and kind of, then what happened, knowing that you had all these professional levers that could potentially help her? 

Frantz: I will never forget that day. My sister was a nurse. So she fully understood what it meant in terms of health and screenings, like she-she knew. And you know, and she shared with me that she had, you know, felt this lump and called her PCP and is like, “Hey, I feel something.” And this is, now we’re gonna, alright so, “I feel something,” talking to her PCP. “I feel something right here.” My sister is a trained clinician. “I feel something.” 

The doctor is like, “It’s just fat, like adipose tissue,” whatever or, “lipoma,” whatever she said, like “It’s just fat.” And my sister was like, “Look, no. I’m going to go and get a screen.” My sister was 39 years old. And we’re talking about cancer screening. So who is the x? What is it oriented towards? She was too young for a mammogram. Right? So she’s like, “No, I’m gonna go, I’m gonna get it. I don’t like the feeling of this.” She gets the diagnosis that it-It’s cancer. 

She calls me and tells me as soon as that happened. I remember being at work and feeling disoriented. Like, I was holding the phone in my hand, and I could hear her on the other side, like, “Hey, hey,” and I’m just like, I don’t know what to. I’m just standing there. And I shared, like, a cube area with this guy, Chris, and he’s like, “You alright?” and I was like, “I gotta go home. I gotta go home.”

And I live like, my sister and I live probably about 20-25 minutes away from each other. And I was like, “I gotta go.” And I just left, I left everything. Just took my phone. And I just booked it. You know, once I seen my sister that-that afternoon, and you know, crying holding each other. Laughing a little bit. That’s one of the things that we did too, right? Like, we even found a little bit of levity. And I was like, “How dare the doctor call you fat!” You know, like, we-we got to, and, you know, which is most certainly one of the things I miss. But we got to, you know, it’s like these ingredients, we got to add a little bit of that spice in ‘cause we knew that’s what was going to help us get through this. 

And from there, I was like, “Look, I know, the head of Breast Oncology at Dana-Farber. Let me contact him and see what we can do, ‘cause I want to get you the best care possible.” And selfishly, I also knew it meant that I could carve out whatever time I needed in my day to go see her. Because it’s, we’re talking, I get to walk from one building to the next. “I’ll call him up, Dr. Eric Weiner.” Super nice guy. And I was like, like, Who? Who here is, because the thing at Dana-Farber, we do like really sub-specialties. So you might have a doctor, like, they see triple negative breast cancer, this person sees inflammatory breast cancer. And I’m like, Who sees triple negative breast cancer? And I was like, Whoever it is, like, I need to contact them, we need to talk like, let’s make this happen. He’s like, “Don’t you worry, like, I will personally care for your sister.”

And you know, that was comforting. Oh my god, we’re talking, you know, top person in the world. So he’s, you know, caring for my sister. And again, I got to go to every single appointment, you know, that I was able to, but virtually all of them, and, and just be there with her. Sit in the waiting room with her. Making sure – and we’re talking about the place that I work, but I’m like, making sure – she gets the best care possible. That, you know, we’re not even waiting too long in the waiting room.

I’m like, these are all the things that, and again, that there was a luxury because I knew how to navigate my own organization. I knew how to navigate the cancer world and that space. And that’s not true for everyone, especially not true for every person of color, that walks through any organization, any cancer center. They might not have someone who’s going to be there to advocate and say, “Why is this happening? Why are we not doing this.” Whatever, whatever the case may be. Or some people might be by themselves. I was afforded the ability to be present and do all that and to be there from beginning to end. But it was hard. It is so hard. Because not being able to delineate between everything that I was doing in my work world, right? I’m sitting there, and we’re in a meeting, we’re trying to make decisions. And I’m thinking, For what? What are we talking about? My sister is dying.

And you know, to this day, I find it very difficult if I’m ever in meetings or have to see Dr. Weiner. And not because of anything he did or didn’t do. You know, I think that he took exceptional care of my sister and the team. It’s just the constant memory of loss. Of being the survivor. And that the survivor’s guilt that occurs with the reminder of seeing his face and thinking, We didn’t win this battle. And that’s super hard. 

I walk into the space, and I walk through the doors that she-she would have walked through. I see some of the people that she would have seen. I talk to some people that, you know, might have known about her case, and I think, like, it’s very, very hard because then I can’t quite escape that. So whether it’s the pain of it. Would have a different orientation to it all? Perhaps if my sister were still here, and she were you know, to your words, either surviving or she’s thriving. But since that’s not the case, my reality is this, and how I-I manage those emotions of walking into the building, or next to the building that my sister died in, like, it’s not easy. It’s not easy. 

And then I think about how many other families of color, people of color, their caregivers, their loved ones, people that theirs survived that feel like this. And I asked myself, Well, you know, Frantz, what are you gonna do with those emotions? You can’t save your sister. Okay? How many other sisters can you save? Can you have some sort of impact in their lives, in the lives of their families? And, like, for me, like, that-that’s a, that’s an engine, like, that’s a drive. Because I don’t want anyone to feel what-what I wake up with every day, you know. … It’s, it’s not easy. And so I want, I want people to be able to experience their loved ones fully, and for the remainder of their lives, ‘cause there’s so much more that we got to fight for. So many people that we have to fight for. We need, we need all the soldiers. If we want to adopt [Jodi-Ann: chuckles] in all that war, war and aggression language. *chuckles* But there’s so many fights out there, that we need all the people that we can, we can get. 

And so I don’t, I don’t take my work in this space lightly. You know, for me, it is life or death. And that’s, that’s why I go hard for the culture. *chuckles* You know, I was, I was my sister’s healthcare proxy. And so you imagine how challenging that could be, you know I was what, maybe 31 at the time, how challenging that could be to make decisions that feel like truly life or death, and feeling like you’re accountable for that. And with my sister’s passing, I’ve not relinquished my proxy role. My job was to make decisions about her life, when she couldn’t speak for herself. She cannot speak for herself now, because she’s no longer here. So I will continue making decisions that will illuminate her life to the rest of the world, that will fight for people whose lives were like hers. So like that, that role I didn’t give, I didn’t hand my badge in when, when-when she passed, I’m like, okay, where she’s living, her existence is on a different plane than this one. But I gotta keep going.

Jodi-Ann: That’s why she sent you that barrel. Right? *laughs*

Frantz: She sent me that barrel. There was a whole sink in it. *both chuckle*

Jodi-Ann: Because with all the tools of her experience, of your, your passion for this, as someone who’s in this community, right, like a sista, sista, right prox? *both chuckle* No. Like, another woman of color, your work is, for me, for other people like me to move away from the kind of warrior/soldier language. If we think about family and community and care, I feel cared for by you, Frantz, in your work in this space. And I don’t, I don’t know if there’s language to even express the extent of what that means. [Frantz: I appreciate that.]

But at the same time, I, you know, I’m thinking about you. Like, how have you felt supported? Like, how do you manage that, not just in the process of your, your sister’s passing but everyday since?

Frantz: Again, right, we-we operate in a communal lens. And with my sister exiting the world, entered, you know, my daughter, Amaya, and I’m, I feel very much supported, you know, by by someone and I don’t ever want to feel like I am giving this emotional burden to a toddler, right, who has no idea [Jodi-Ann: chuckles] how to, like, “I don’t know how to make you feel better, Dad.” Like, that’s a lot. But you know, she calls me da-da like, “Da-da, what’re you doin’,” you know? But I think that her existence is so meaningful for me. 

And obviously my wife, and, and then all the people who knew my sister. I don’t just share these memories. It’s not as if my sister was only amazing to me, my niece and my nephew, you know, her survived, who were young children when my sister passed. Like we all, we can share in these memories, we can all talk about these beautiful things. And it’s beautiful. And then we can joke about things that, you know, that she did, funny things that she said, because again, while every day, you know, it’s like, being anti-racist, it’s this active thing, while every day I get up, and I think about her, and I use that to drive myself forward. And I’m actively approaching this work, and I’m like, Okay, how do I make an impact? How do I push this forward, but I’m not doing it by myself, and I can’t operate in this silo, it most certainly takes a community in the fight in itself, when we’re talking to cancer disparities, and, and equity and care. Like, I’m not alone in that either. And, for me, that’s also, it’s comforting. It’s energizing. It’s centering it, you know, it makes you feel like you’re not on the outskirts of it all. That you are, you’re right in the thick of it. 

Jodi-Ann: Yeah. What advice do you have for someone who’s lost a sibling?

Frantz: Talk about them.

Talk about them, talk about them, talk about them. And you know, cry. Cry about them. I-I cry about my sister, I could probably say at least once a week, and I’m okay with that. I-there’s this element for me of I fear the day that I stop crying over her passing. Because then it means I’ve forgotten something. I’ve, I’ve lost all of the memories. 

My-my daughter’s favorite movie is Coco. And if anyone has ever seen it, it is beautiful. It’s beautifully done. And it talks about Dia de Los Muertos and, you know, the day of the dead in the Mexican culture. And the final death for anyone who has passed on is when those who are living forget them, and they disappear. They just turn into dust and disappear. And I’m like yo, I think about that. Because the final death for those who have passed in our real lives. Right? It’s, it’s that point when we forgotten what they look like. You know, I can’t I, have a magnificent and huge painting, you know, and the other room. But these are intentional. 

So it’s, be intentional about remembering them. Talk about them, cry about them. Laugh, make fun of them. However, you approach and were oriented to your relationship with your sibling, carry that forward, you know, be like, yo, you woulda loved this. And like that, for me that keeps them alive in your home, in your spirit and all around you. And so that, while there might be missing physically, that-that energy is I like that energy is somewhere it can’t just disappear, right, like that energy somewhere. And I’d rather harness it and keep it around me at all times.

Jodi-Ann: Yeah, no I think that’s that’s great advice. And something I hold with me for a number of different scenarios, keeping people with you, remembering them, not losing those memories. I don’t know if you remember, but a couple years ago, when I got the news that Ron Brace died. I was so torn up. This was I mean, you see me rolling around BC with Ron like, this was my – I spent so much time with him like my best friend, you know, the first couple years at BC. And I remember when I was in the hospital… I don’t know I had a lot of dreams about Ron. 

And when I was in the hospital, I was just feeling so down and I was just kind of looking out at the clouds and there was a guy in the room with me. And he said “Oh, do you see the clouds? Well, it looks like the sun’s about to come out.”  And I said “okay, whatever bro.” I’m sitting here crying, right? I’m not trying to have a conversation with you. *both laugh*  

Then a nurse comes in and she says, “Ronnie, are you ready to go?” And I nearly fell out. [Frantz: Right.] I nearly fell out. And I said, “Okay, I’ll look. I’ll look at the sun coming out now. Okay. [Frantz: Yeah, okay.] I got it Ron. *chuckles* I got it Ron.” You know? [Frantz: My bad.] Yeah. *chuckles* And I I-even though he and I had lost touch over the years, I do try to be intentional about remembering him and understanding what that relationship meant to me. And I think that, that centering around intentions with that remembrance process is so important and so invaluable. And thank you so much for uplifting that. [Frantz: Thank you]. 

So as we wind down speaking up intentions, I always try to create intentional spaces in the interview, to uplift other people, other work and things that have been helpful or impactful for people in any way. And so I wonder if you can share a few recommendations for our listeners, who is someone that our listeners should know? What should they read? And what should they listen to?

Frantz: A amazing book that I loved was called When Breath Becomes Air. And the reason why I thought that book was really beautiful was the-the perspective of the person who’s- who wrote the book was battling cancer. And he was a, I think it was a neurosurgeon, if I’m correct. And I think about this book, specifically, because of its intersection of what you think you know, and then what happens when you have to experience it. And even in my cancer journey now, right? It’s like, oh, what I think I know about cancer, and then what it feels like when it is next door, when cancer is, is knocking at your bedroom door like hey, you inside? [Jodi-Ann: chuckles] And I think, I think, like, for me that was pivotal in understanding that. It’s a very humbling experience, to think you know everything and then have to learn the hard way. 

Something to listen to: other than, you know, voice messages, videos of your loved one, if you have them if you’re lucky enough to have them, which I have some my sister would, would call me for some reason she loved calling and singing. Lionel Richie, *Frantz sings* I just called to say, I love you. And I’m like, okay, so I have, I have those, [Jodi-Ann: Aww.]  you know, keeping them in the cloud so that I don’t ever lose them. But something to listen to. I think I listened to a lot of songs and music that my sister loved. And then and things and songs that reminded me of her.

There is this beautiful song that reminds me very much of her by Michelle Featherstone. It’s called I’m there too. And if you want, if you read the lyrics before I’m like, this is this poetry. But it is just it’s the song is beautiful. And so I think about her a lot when I’m, you know, in my space and I’m listening if I listen to that song. And then there are some songs that she just loved. And I know she loved. One of the things now, I’m gonna just say and wax poetic about my love for my sister. But when she started her cancer treatment, every month, I made her a new mixed CD like her, you know her mixtape. And I would just put like, songs that I think would help either energize her or songs that I think I’m like, I want you to sit with this diagnosis. I want you to like listen to this. Songs that would uplift her. Each mixtape had a theme. Like I put a lot of thought and love and attention into it. And because I gave her all of those, and I have all of them. I created like the similar like the playlist on my Spotify of all the songs that I put on CD for her. I feel like we can, we’re listening to the same song sometimes. And that that’s comforting for me. So I’ll listen. Listen to music, Michelle Featherstone. I’m there too. And, and listen to your heart. A little bit of advice. Feel all those emotions is so important. Feel them. Let them work through you. You know, like water, drink it. Let it go down. And then when it’s time to expel it from your body, you know, do that. But feel them.

Jodi-Ann: If you have a little bit more time, I want to ask you a question about that. [Frantz: Of course.], Just thinking about being able to be in your feelings and feel those feelings and have these remembrance processes and rituals and artifacts, you know, if you will. And doing that as a Black dude, right? Like, [Frantz: Right]. What? We don’t have a lot of space in our culture. And thus we we internalize not having a lot of space in our culture for Black men to be emotional.

What do you think about that?

Frantz: I’m no martyr in any way, right? And I’m, I-it’s not as if I figured out how to deal with my emotions better than any other person. But I’ve normalized. And I’ve made it acceptable for myself to feel because I think about my nephew, right? My, the son of my sister who passed and I’m like, you need to know it’s okay to be sad, Noah, you’re gonna miss her. And it’s okay to miss her. But like, how can I say it without allowing myself to believe those same words? How can I comfort him if I’m not enabling myself to be comforted? So I think about that, as an example, you know, of doing that for myself, and how healing it is for me to be in touch with my emotions, and what that might mean for any other person. So that it gives.

Yo, we don’t even give each other permission to feel. And it starts with that, like, I’m going to give myself permission, so that other people, whether they want to give themselves permission from that, or if they’re, they want to approach me and say, like, Can I talk to you about something I’ve been experiencing what I’ve been feeling? And letting that window be open, and just keeping it cracked open for anyone to be able to poke their head through and say, Can I just talk to you about something that I’ve been dealing with? Because I’ve been so open, and what I’ve been dealing with, but it’s not easy. And I didn’t, this didn’t come last night, *chuckles*  this epiphany of my life, right? 

It, it takes it takes a lot. And it takes a lot of people. You know, and therapy. I don’t even wanna lie to you, like, therapy is huge. You know, people? [Jodi-Ann: Hell yeah.] You’ll see you go see a doctor once a year, you go see your dentist once a year to make sure your oral health and your physical health, everything like, Oh, you got the physical, you’re good to go. But like we don’t even see for our mental health professional once a year just to say like, Hey, I think I’m good. You know, let’s just take a quick peek at this. *both chuckle* You know what I mean. And so just normalizing that in language, not like saying these words out loud. Ther-a-py. You know, letting people hear it, talking about it and sharing those experiences. I think that when people trust you or they believe you, then when you say these things like. “Ay yo therapy works,” they might be like, Know, what? Because you’ve said it, let me just let me take a look. Let me see what this is all about. And giving them that permission to to be curious. And to be open about it. 

Jodi-Ann: Yeah. Who’s someone or our listeners should know?

Frantz: Man, Dr. Bernard Tyson, may he rest in peace from Kaiser Permanente who passed away recently. When I think about my, my career and the intersections of being and wanting to be a leader in the healthcare space, and who he was, and what he stood for. And getting to the-the point and the peak in his career of where he was, and still was like, I know I lead this entire thing. I’m going to let you know how important it is that Black people are at the center. I’m going to talk about all of this, I’m going to bake it into this the entirety of this health system. Right. Kaiser Permanente opened a medical school recently, and they named it after him. And the thought is we’re going to teach medical students how to care about the health of the public, how to care about how you approach, you know, caring for people of all differences. And so his passing I was like, damn. That was for me, I’m like, Okay, I have one tough time finding mentors, you know, in my field, and for me, he didn’t know and I never met him before, right? But it’s the same thing. It’s like, you know, I’m rooting for everybody that’s Black. And I was like, Oh, all right, I’m with you. And so just seeing his career and how he went about it, and trying to think about my own, you know your professional and your personal life and the-the intersections of that, like, how do I make sure that what I care about shows up in how I care for people, how I conduct myself in my work, and what my career span looks like.

So yeah, [Jodi-Ann: Yeah.] Dr. Bernard Tyson.

Jodi-Ann: I did not know about him. So I definitely have my marching orders to learn about his life and his legacy and the work that he was doing around public health and health care. So damn, that’s a great recommendation. Thank you. And thank you, thank you for doing this Frantz. I really appreciate that you reached out about this project. You know, we haven’t spoken in-in a number of years since BC. And I think a couple years in New York after seeing you and Nora and your family flourish and grow. You know, I’m rooting for you. *both chuckle* I’m rooting for you and your work and to just be connected to you in this new way. It matters, it matters a lot to me.

Frantz: Sure, I appreciate you. And you know, I reached out just to thank you for centering Black voices, because I felt like what, how wonderful it would have been for my sister to be able to engage with something like this right, this podcast and hear these stories, and hear herself in it. And so again, the proxy in mefelt like I had to do what she would have done to say thank you for for having this platform. And this opportunity to to hear us the FUBU, for us by us. [Jodi-Ann: Mmhmm] And so I appreciate you.

Jodi-Ann: Black Cancer was created, edited and produced by me Jodi-Ann Burey. Thank you so much Frantz for sharing your story with us. To make sure that other Black Cancer stories become central to how we talk about cancer, rate, subscribe and take a few minutes to leave a review wherever you find your podcast. Find us online at blackcancer.co and on Instagram at @_black_cancer. Trauma comes with endless wisdom for ourselves and those around us. Tell someone you know about Black Cancer.

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