Full Episode Transcript

Season 2 | Episode 7: Holding Space for Yourself (with Marissa Thomas)

Transcribed by: Eryn Strong, Hannah Rosentreter, Gina Marioni, Sonia Montejano, Elizabeth Jarvie, Kisa Nishimoto, Leina Megurikami and Jamie Fischer

Running Time: 1:42:40

Marissa Thomas: I hate that we have to write this chapter in your story. But if we're going to write it, let's make it a damn good one.

[Theme music begins]

Jodi-Ann Burey (as host): Welcome to Black cancer, a podcast about the nuances of our lives as people of color told through our cancer journeys. I'm your host, Jodi-Ann Burey. Our guest on today's episode is Marissa Thomas, breast cancer survivor and founder of For the Breast of Us, a breast cancer community for women of color. You can find the links to their website and social media in the show notes (Facebook, Instagram, Twitter, YouTube). You know, after I received my diagnosis, it took a few weeks before I texted my doctor, “Wait...do I have cancer?” It was after that, that I started to search online cancer forums of any kind to help make sense of my experience. And let me tell you, *ugh* it provided so much relief. Well, up until a point. Being a woman of color is always the lens through which I experience the world. And I just couldn't find anything, anything at all that could meet me there. I'm so glad that For the Breast of Us exists now. Because I for sure could have used it back then--a space, similar to this podcast, to be in community with other folks of color grappling with the intricacies of grief, support, and needing to be seen in the system that wasn't designed to see us. Where else but on our platforms can you engage in a conversation about how lotion saves lives? And you'll have to wait until the last third of this show to get to that. P.S. There's also a story at the end where I basically admit that I'm a terrible human being—don't come for me. We all have our journey towards growth and enlightenment, I'm still on mine. It's gonna be a long one, it's going to be a nice and juicy one. Here's my conversation with Marissa:

[Theme music fades out]

Jodi-Ann Burey: That you can feel a certain way, you have all these beliefs, and then you talk to a doctor, and then things start to shift. [Marissa: Right.] To varying degrees. I think I am, even as someone who has been in the healthcare system for many, many years, way more years than I wanted to ever be. [Marissa: Mmhmm.] Even someone who has a background in health, who talks about race and racism all the time, I'm still fighting to find my way to talk about these things, authentically, in healthcare spaces with doctors and professionals. How do you feel about it? Because you're also in the healthcare [Marissa: I am.] space, right? So what are your thoughts on that?

Marissa Thomas: Do you mean authentically in a way that they can understand, or authentically from your own perspective?

Jodi-Ann Burey: That's an interesting question. Because I want *laughs* this is the whole thing, right? Do you want to be right, or do you want to be effective? [Marissa: Right.] For me, I want me being right to be effective. *both laugh* 

Marissa Thomas: See, and that's funny, because for me, I always say, “Do you want to be right, or do you want to be on the right side of history?” [Jodi-Ann: Okay, bring ‘em to task, okay!] *both laugh* Because, you know, sometimes when you're on the right side of history, that doesn't necessarily mean that you're right. But you're still making a difference on the right side of history. If that—if you understand what I mean by that. 

Jodi-Ann Burey: I do understand what you mean by that. But you know, you know how they say Black and Brown folks have more of a collective mindset? [Marissa: Right.] Sometimes I'm like, *groans* can I just think about myself? *both laugh*

Marissa Thomas: I mean, we are always in the background. We're not necessarily in the forefront when it comes to a lot of conversations, not just healthcare. You know, for example, this past October when we did our Breast Cancer Awareness Month campaign for For the Breast of Us, our campaign was called The Naked Truth Project, [Jodi-Ann: Mmhmm.] and that's where women were able to show themselves authentically. Pictures of themselves after breast cancer surgery, reconstructive surgery, whatever it may be. And when we started posting the photos on Instagram, Instagram started censoring us and removing the photos even though in their censorship, it says if there's any photos like mastectomies, things of that nature, they won't be removed. So what we noticed is that at first, a lot of the Black and Brown women's pictures were getting censored and taken off. And then eventually, some of the white women's pictures started disappearing too. It just started happening, like everybody's pictures just started being taken off. [Jodi-Ann: Dropping off the internet! *chuckles*] Yeah. It was like a Thursday and, you know, people started tagging Instagram on their feeds and saying “Stop removing our photos, what's going on?” And it turned into this big thing, right? And I know some people are like well, should we do this? Is this okay? And my thought process is like, well do you want to be right and PC? Or do you want to be on the right side of history? 

Where the right side of history to me is, it's like, yes, you do tag Instagram, and you do tell their big people like, “Hey, look at this, this is a problem.” Not only do we not see pictures of Brown and Black women all the time, when it comes to, you know, if you walk into a plastic surgeon's office, and you want to see pictures—nine times out of ten, they're not going to have a lot of pictures of my skin color to see what it's going to look like after I have a surgery. So now we're creating this platform and these pictures for other women to see what it looks like, and now you're taking that away from us, too? So yes, I want to be on the right side of history, where it's like, I'm going to tag Instagram, and I'm going to tag these people and say “You need to stop doing this because it is important the work that we're doing.” So that's what I'm saying in do you want to be right and, like, not ruffle feathers? Or do you want to be on the right side of history and say “No, this is wrong”? 

Jodi-Ann Burey: Can I tell you what's been happening with me, though? [Marissa: Yeah.] So I'm in this pain management program at Swedish. And it's a really intensive program: it's 12 hours a week. Do you know the program? 12 hours a week? [Marissa: I do.] Okay, for four weeks, right? And I'm in the program and I have four or five providers. Everyone's cool except for this one guy. I’m, like, *sighs* something’s up with him. We'll call him...Chad. It's not his name, but not dissimilar. *laughs* [Marissa: Okay. Okay, Chad. Hey, Chad.] Yeah, hey, Chad, what's up? [Marissa: laughs] So I get it. Mind you, they're not paying me to be there. I'm not paying them, right, to be there. Everyone is there because, you know, they're trying to support people who are experiencing chronic pain. And I get in there, Chad is asking me all these questions, I'm answering all the questions. And he asked me, you know, did you watch the lectures? I say, “Yeah, I watched the lectures.” I almost felt like he was testing me. Well, you know, what stood out to you? I'm like, “I did do the reading, Professor, thank you,” you know? [Marissa: laughs] And so I'm sharing with him, you know, “The neuroplasticity and all this stuff was really interesting to me, because it connected with X, Y & Z that I've been exposed to before, and I saw that you cited this medical journal study, but I couldn't find it online, you know, could I get a copy of that?” Blah blah blah.

And he says, “Well, I don't want to bore you with things that you already know if you know all of this stuff already.” [Marissa: What?] And I'm like, I said, “What's that? I don't know what that—who said that? Who said that?” [Marissa: Right.] Right? And then he said that I wasn't engaged in the program. And so I'm like, “Well, what does engagement look like to you?” [Marissa: Right? That was gonna be my question.] Thank you, Marissa! *both laugh* And he says, “Well, you know,” and then he starts slumping back in his chair and he's like, “You know, your body language….” I'm in the pain management program, it is in my file, you know I have a spinal cord injury, I had back surgery. [Marissa: Mmhmm.] And I said, “I didn't know that body posture was going to be an indicator of engagement.” [Marissa Right.] And 75% of my face is covered with this mask, and so you tell me what you think lack of engagement looks like. I'm answering all your questions, I'm sitting here, I'm talking to you, and then this is what—so it becomes this whole thing. 

We had the rest of that time where I'm supposed to be relaxing and managing my pain and trying to reduce the load on my nervous system. I had this big conflict with him, we actually resolved it, had a good conversation, everything's cool. Over the weekend, I said, “Cool, glad that happened, whatever.” Oh! During that conversation, I said, “You know, my recommendation to you is that you, you know, evaluate some of the biases that you're bringing into this.” [Marissa: Right.] And he goes, “I don't have any biases.” And I'm like, “I don't know how you are serving the public *both laugh* with that orientation.” *both laugh* [Marissa: That's just like saying, “Well, I have Black friends, so I can't be racist.”] Hello, hello! Right? [Marissa: Same thing, yeah.]

So fast forward: to make a long story short, I share that there was a conflict. These are the issues that were challenging for me. We resolved this conflict. I think that as your team, you should talk about it. I show up on Tuesday, ready to do my program, my whole schedule gets shifted. They completely remove him from my program to the point where I can't even be in the group sessions. And so I'm like, “Well, I don't know why I'm coming here if I like—” and I didn't ask to be removed from this program and so all of this stuff is happening. I have spent 50% of my sessions since I sent that email--which, mind you, this is something that he should have already disclosed [Marissa: Mmhmm.] ‘cause it happened in my session. [Marissa: Right.] *sigh* I have to turn 50% of all the things that are supposed to be relaxing to me into kind of defending, you know, my position and all that. And so I've been really settling with, like, when things are happening to me in the healthcare system, when you talk about, like, being right, versus being on the right side of history. You know, should I have just sat there with these microaggressions, and holding that, to try to get what I can get out of this program? Because now saying something about it is actually reducing my access to health care. [Marissa: Mmhmm. Mmhmm, yeah.]

So how do you make that gamble of like, “Hey, I actually need you. I need to actually have a deep conversation with you about reconstruction or this and that, the things that you're saying to me, or the resources that you're providing to me or whatever, are not centering me, you're not giving me any options.” Do I say something about that? Like an interpersonal setting, right, like in your own healthcare management. [Marissa: Right.] Or do I, you know, save it for my girlfriend, save it for somebody else, and just get what I can get? I mean, what do you think? 

Marissa Thomas: I think that's part of the issue when it comes to Black and Brown people in healthcare in general. I think we don't speak up a lot when it comes to things that way. Or if we don't like a provider, if they treat us wrong, we don't go above their heads to say “This is the experience that I have, and this is why I'm firing this provider and why I'm moving on somewhere else.” Like even my sister was telling me—she just recently had surgery on her ACL. And they sent her to a physical therapist that they send all their patients to, and she didn't like the physical therapist. She kept telling them when she's doing, these exercises that she's in pain. So she researched and found another physical therapist to go to. And so the original physical therapist is still calling like, “Well, we want you to come back, like why aren't you there?” And, you know, she's like, “Well, I haven't even responded to them.” And I'm like, “Respond. Tell them why so that they know [Jodi-Ann: Yeah.] these are the reasons why.” Because I'm sure you're not the first, and you won't be the last. And I think as Black women, we don't-providers, medical providers, they don't, and I'm sure you know, they don't listen to us. Whenever we're complaining about pain or whatever, they're just kind of like push through, get through it. Which sometimes you can, and I get that point. But I get what you're saying that it's hard because you have to make a judgment call of like, “Am I going to say something and then have the risk of that I'm not going to receive the same care that I would have gotten if I didn't say anything? Or do I just not say anything, and then I go vent to my girlfriends and my family members?” 

I would say as somebody that's in healthcare...I mean, I'm outspoken anyways, so I would still say something, and I kind of push other people to do the same thing. I also say, I feel like if you have a good rapport with anybody that you're dealing with on your healthcare team, you definitely let them know. Kind of set the stage for them and just be like, “Hey, we're gonna have a frank conversation here. I don't like X, Y & Z. I don't want this to affect my care.” Like, say that all out to them. Because as your provider’s saying, “Well, I don't have these biases,” it's like, everybody comes with a set of biases that they already have. I don't care who you are. [Jodi-Ann: Mmhmm.] I don't care your race, your nationality, whatever that may be. But you need to check that shit at the door. [Jodi-Ann: Yep.] It's hard for a lot of us to do that. Right? Even me, even you, anybody.

So I think having those frank conversations. And if you can't have it with your medical provider, then you should be having it with maybe somebody else on your medical team, because if you can't get through to them, then if you talk to that other person, maybe they can. And they could “dumb it down” in their language so that they can understand where you're coming from. So I get it's a double-edged sword, but I would still say something. 

Jodi-Ann Burey: I mean, I said, I said something...and I would say something again. [Marissa: Mmhmm.] What I try to do when I make these judgment calls is…what am I saying? *both laugh* 

Marissa Thomas: I think what you're trying to say is when you make these judgment calls, you're trying to decide in the forefront, should you be making these judgment calls? And is it okay for me to do it? And is it going to affect me in the long run? Maybe? 

Jodi-Ann Burey: Yeah, so yeah, so exactly, when I make these judgment calls, I always try to ask myself, what is my goal? [Marissa: Right.] And I think as Black and Brown women, we have multiple goals, right? [Marissa: Mmhmm.]  I want to do something for the culture. And I'm also trying to get this health care, you feel me? *chuckles* So sometimes your goals are in conflict, right? 

Marissa Thomas: Right, and help whoever is gonna come out, you know, behind me too. 

Jodi-Ann Burey: Exactly, exactly. So, it's not just about me, it's about the person coming up behind me. And at the same time, it's also about me. I think it's, it's tough to manage that, especially if you don't have a lot of exposure to dealing in these healthcare spaces, which are positioned to be these, you know, high-regarded, kind of elitist, very sterile—not just in, it's like, bacteria levels. *chuckles* [Marissa: Right.] But you know, in its look and it's feel and the white coats and all that kind of stuff. But you, you know, you mentioned you're in the healthcare field, you have exposure to these types of people. So can you just give a sense of your professional background, just so we have a sense of what you know, what you come to the table with. *both chuckle*

Marissa Thomas: So I have been in healthcare what—it's 2021, which is crazy to think—I've been in healthcare for about the past 17-18 years. It'll be 18 years in August, which that's crazy to say as well. I started off as a Medical Assistant in a primary care provider’s office, small primary care provider. I got to do everything there. And so I know that that has taught me everything that I know. She let me do a lot of hands-on. And I learned completely a lot. She was actually one of the first medical providers in the Seattle area who started treating transgender individuals. And so I got to do and see a lot of that as well, too. So that was pretty dope.

Jodi-Ann Burey: Heck yes! Represent. 

Marissa Thomas: So from there, I moved on to working at Children's Hospital in their ENT department, so I moved into specialty. And then now I'm over at the University of Washington in the Inflammatory Bowel Disease department. I still have my Medical Assistant license just so I can do injections, patient triage, things of that nature on the medical side—but I am the Healthcare Program Manager for the Inflammatory Bowel Disease department. So I do a lot of admin work too. And working with insurance companies. We all love that. [Jodi-Ann: Oh, yeah.] *both laugh* I fight with insurance companies pretty much all day long, helping patients try to get their medications approved. So I know how to navigate the system really well. And so, that's one of my goals is to help other people to be able to do that. ‘Cause I get it, it's hard. And sometimes you want to give up. A lot of times we want to give up or you just don't even want to start the process because like you said, it's so sterile. And it's just like, “Oh, do I even want to do any of this?” But once you get it down, it's pretty easy. And the things that you can say to trigger them to be like, “Okay, so this person isn't playing.” Like, I know when I was going through chemo, there was stuff that I would say, and they'd be like, “Okay, so she's on her shit. So we cannot pass anything past her.” [Jodi-Ann: chuckles] So it's just being able to say those type of things so that they know. 

Jodi-Ann Burey: I love that. I sent an email to Swedish yesterday, and I was like, “So can I have in writing why you're reducing 30% of my care program? I just need that in writing.” [Marissa: Right.] And then they emailed me back with like, a whole new schedule that wouldn't have that reduction. I was like, Oh, okay.

So, I'm curious, like, do you feel the irony, or I don't know if it's irony per se, but rather, I guess, this extra jab from the universe to be someone in healthcare, and then you face this major health crisis, right? So not to say that people in healthcare don't get sick or face health traumas, but it's kind of like, Damn, me too?! Me too-et tu, Brute? *both chuckle* And so, you know, can you share a bit about—I don't know how it landed on you—of how it hit you when you found out about your breast cancer being in this health space for so long? 

Marissa Thomas: Well, it was weird, because I've also worked in Radiation Oncology. So I got to see cancer patients there too. So for me, it's like, Oh, I know. Oh shit. Like, I know what I'm getting ready to go through. It's definitely a slap in the face, but it's also a blessing in disguise at the same time, because now you get to be on the patient side. And you also get to see how it looks like when they go through this process. And when they have to work with different individuals. For me, when I was doing my treatment all at Seattle Cancer Care Alliance, it was amazing to see them; a lot of the medications that they had to get approved before I even started my treatment, I had no hands on that. They took care of all of that. So that's amazing. Where I know for some patients, they literally have to get involved. They have to call their insurance company and fight with them and tell them why they need this medication, while their doctor’s doing the same thing. I didn't have to do that. So that was amazing to see. Being able to, from the flip side of it, having to get a blood draw every time I went in the lab, being behind every single time and being like, Okay, so this is why patients take like two hours to come to their appointments, because the lab is just like moving at a snail's pace. [Jodi-Ann: Yeah.]

So it's interesting to see the whole process in that. But then also mentally be able to give thanks for patients and know that when you see them, you're actually seeing people, they're not just numbers. Because I think with healthcare we've turned it into: These aren't people anymore. They're just numbers. And we’re churning them in. Like the fact that primary care providers have to see patients every 15 minutes is ridiculous to me. How can you crunch down anything in healthcare within 15 minutes? You can't, it's dumb. [Jodi-Ann: Yeah.] So being able to see that and be like, Okay, so these are people. I know what that's like. And people come with other things. You may be coming in there because you're diagnosed with breast cancer, but what's going on at home? Are you married? Are you going through a divorce? Do you have enough money to eat every day? Did you have enough gas in your car to get here? [Jodi-Ann: Mmm.] You know, are you going through stress? Are you depressed right now? Like, there's all things that they come into that so you're not even dealing with just breast cancer, you're dealing with these subsets and realizing that these are people. I think that was the beautiful...and the blessing in disguise for me. 

Jodi-Ann Burey: And I think that's why I always try to choose providers that kind of care about me. I don’t know, it's weird. Like, I don't know if other people do this, but I turn the personality dial way up on that first visit. I feel like it’s a first date. [Marissa: laughs] ‘Cause like, I need this person to like me, [Marissa: Right.] so I can get some good health care. *chuckles*

Marissa Thomas: Right, and that bedside manner is like, that's for real. Like if you enter that door, and like, we don't have a good connection, like, eh...I don't think this is gonna work. I need to go find somebody else. Because I need somebody that's also going to be as open and honest with me. Like, if I ask you a question, you're not just going to bullshit me through the whole time, you're actually going to answer it for me, you know, give me all the information. And I think that's another thing too, with providers, when they come to seeing people of color,  they don't want to give them all the information, they kind of feel like they want to water it down. It's like, “No, give me everything. Tell me what all these side effects are gonna be.” Tell me, you know, after I have this chemo, I'm going to be on my ass. Tell me that, you know, at the end of the year, when I'm done with treatment, this is what I'm going to feel like. Don't just tell me what you want me to know right now. Give it all to me so I can plan out exactly what I want to do. 

Jodi-Ann Burey: Exactly, exactly. Speaking of work, you know, I think when I got my diagnosis, I started applying my work things; like how I would manage a health program and how I would design interventions, is kind of how I approached how I was going to make decisions about the surgeon and what would happen with my treatment, all that kind of stuff. [Marissa: Mmhmm.] But then you reach a point where you can't be the project manager and the project at the same time. *both chuckle* I don’t know about that. 

Marissa Thomas: I mean, you can but it's not gonna be easy. [Jodi-Ann: laughs]

Jodi-Ann Burey: Like, was that stressful for you? How did you manage balancing? You know, ‘cause you speak about in a very integrated way. Like, here's the patient side, here's the here's a provider side—patient provider. You know, did you feel like you ever had space in your journey to be the patient? 

Marissa Thomas: I did. 

Jodi-Ann Burey: Do Black women ever get that? I don’t know. Is that a thing? [Marissa: laughs] Do we get that? 

Marissa Thomas: I mean, it's hard. But I think you have to have a really good core support system around you. One thing that I forgot to add, when you had asked me about my experience in healthcare, I actually also have a Bachelor's degree—a Bachelor's in Healthcare Administration. And the funny thing about it is when I was diagnosed, I was in the last year of my program of that and so I had to dial back getting my Bachelor's degree. Like, I was on set to graduate that summer, and I couldn't because now I had to, like, dial back because I can't take a full load of classes and do chemo at the same time. Like who does that? Wonder Woman wouldn't even do that. [Jodi-Ann: No.] I don't care what anybody says. [Jodi-Ann: Yeah.] So I think with having my support system, that helped a lot, because they took a lot off of my plate, even though I still felt like I had to be strong for everybody around me. But they were able to let me just focus on myself, make some choices and decisions when it came to my healthcare and what I wanted to do. You know, and that's one of my biggest things that I say for people. It's like, whenever you...don't ask people or tell them: “If you need something, let me know.” [Jodi-Ann: groans] Because nobody's ever gonna let you know anything. That's like one of my worst pet peeves. I'm just like, just do. Anything that somebody's going through, like, send them something from Amazon, send them something from Target, you could send anything. Everybody loves Amazon and Target. I mean, hello—look at how they've thrived during this whole pandemic. [Jodi-Ann: chuckles] There's something there for everybody. [Jodi-Ann: Yeah.] So I think as people who are a support system, if they just dial in, and you can do those little things around them, that actually helps. And so for me, I think that helped me because I was able to just focus on my health, and get through this and make it to the end, versus having to, like you said, be a project manager of like, Okay, well, let me like, figure out this, and let me figure out that. And at that time, my son was 13. So then also having to parent by myself, too, is a bigger thing as well. 

Jodi-Ann Burey: That's a lot. So managing school. First of all, I feel like your chemo treatment could have definitely counted as your last year of your Bachelor's. [Marissa: Right?] I mean, that was hands-on experience. I mean, that's a practicum. You know? *both laugh* 

Marissa Thomas: Yeah. I'm like, can we just-why don't you just graduate me? 

Jodi-Ann Burey: Yeah, just call it!

Marissa Thomas: Right. Yeah. You want me to write a dissertation? I can do that real quick. *laughs* I'll talk you through it. 

Jodi-Ann Burey: Exactly. I'm spending more time doing healthcare administration in, you know, these couple of months than any of these peoplein my whole program. 

Marissa Thomas: I can tell you my whole process.

Jodi-Ann Burey: Exactly, exactly. That's so wild. [Marissa: chuckles] So anyway, you're managing school, you're managing parenting, you're trying to, you know, manage yourself and also take care of yourself and this whole process. I think it's easy to say like, Oh, look at all that strength and resilience. Look at how she's pushing through her pain. And she's - [Marissa: Mmhmm.] all the things that they say to us, right? And so I feel like there are elements of that, of our journey, right, where this disproportionality in the strength narrative that like “we're always strong”. What, we don't get to kind of show our personhood? [Marissa: Mmhmm.] This narrative of strength erases our personhood. And so the ways that we struggle, the ways that we experience sadness, and depression and stress, right? Like we can really find ourselves in this completely natural and normal kind of muck of trauma. These are normal things that people go through. [Marissa: Right.] And so what was the muck for you, following your diagnosis and your treatment journey, and just all the different ways that you were...yes, being strong, being resilient, parenting, doing all that kind of stuff. And what was actually happening for you, Marissa, the person? 

Marissa Thomas: I mean, I was depressed. I hit, definitely, a low in the middle of my treatment to where I was depressed and noticed it. I know people around me noticed it, too. My dad had said to me one time he was just like, “You know, you're always quiet, but you're really quiet right now.” And I just didn't have anything to say I'm like, “What do you want me to say?” Like, I feel dead. I don't want to do this. But I'm having to do it. You know, I didn't choose this. This has been chosen for me. So that's one of the biggest things when people would say like, Oh my God, like, you're just one of the strongest people I know. I'm just like, I'm only doing this because, like, what else do I have to do? You would do the same thing if you were in my shoes. 

And the biggest analogy that I would say, that I would tell people all the time is that as soon as I was diagnosed, I compare it to me being, like, in a valley. Like I just put my head down and got through it, right? Like you're in a storm, you just put your head down, you just get through it. And then once you're done with treatment, you get to the other side. And for everybody else, it's like these rainbows and butterflies and sunshine, like, Oh my gosh, you're so done! This is great. Inside, you feel really cool, too. Because you're like, Man, everybody's here at the finish line with me. They're clapping. And you look up, and you see the sunshine and everything, and it looks nice, but then you're like, Oh, shit. You look behind you and you're like, I got to go through all of that trauma and everything that I just went through, ‘cause I need to unpack that. Nobody else around me can unpack that. So I have to unpack this past six to nine months that I went through and figure it out. And not to mention that I'm not the same person that I was six or nine months before. So now I have to figure out that whole process. And so a lot of people don't get that because they're just like, You're at the finish line. You're done. You've made it through. Yes. But they don't understand all of the trauma that you have to unpack through that. 

And it's a lot, it's a lot to get through. You're not going to get through it within a day, a week, a month, a year. Nothing like that. It's years that you have to get through. And that you still may be going through, you know. Like I'm coming up on five years out. And I would even say, like, there's definitely moments and times where you just remember, or you know, you have like an anniversary or something that comes up and you just have to be like, man, I actually went through that. I actually went through it. And does it make me stronger to some people on the outside? Yes. But for me, it's so much more deeper than that, that I still have to go through and remember who I am and what I am and what I've been through. So yeah, I would say that's definitely the muck...that even I'm still trying to dig out of. 

Jodi-Ann Burey: Girl. [Marissa: laughs] I feel so seen. *both chuckle*

Marissa Thomas: I mean, it's so much I would always tell my best friend, you know, she would call or text me because I would get my chemo—I did AC, which is Adriamycin and Cytoxan which is one of the worst type of chemos that you could ever get. It's so dose dense, it just knocks you on your ass. You know, I'd get it on Thursday, and then Mondays and Tuesdays were like my worst days and she would call or text me and she would just be like, How are you feeling? Where are you at? And I would be like, I'm in the valley of death. And she knew what I meant. And it literally felt like I was being ran over, slowly, back and forth by a semi truck is what that felt like. And then you would come back up. So then like Wednesday or Thursday is when I start feeling better and I start feeling like myself but then mentally, that's a mindfuck, right? Because then you know, you're doing good these days, but then that following Thursday, you got to go through that again. So you mentally have to prepare for that. [Jodi-Ann: Yeah.] 

So that's a lot too, right? And so that's why I said, what that analogy, it's like, you're in the valley, and you get to the end, and everything's okay. But then you still have to unpack all of that, that you went through. 

Jodi-Ann Burey: Yeah. And in a sense, the way I'm visualizing it, too, is you're in this valley and people are treating you like you're at the end, right? You're on the other side. And you're like, Oh, I'm at the other side. And then you realize where you are, you're like, Oh, I'm not on the other side. I'm still. in. the. valley. [Marissa: Exactly.] *both laugh* Everyone's cheering... [Marissa: Yeah they’re literally cheering for you.] 

Okay, this is so... this is so off the plan, but, you ever heard of those tough mudder obstacle races and stuff? It's like the mud runs. [Marissa: Yes. Mmhmm.] Okay. So Tough Mudder is like, “the one”. The waiver to do it is four pages. You have to initial next to every single paragraph. And they call it the death waiver. They're literally like, If you die it’s on you. Right? [Marissa: Right, right, you signed up for this.] You sign up for this. And it's like 12 miles of just craziness. So this is when I was peak fitness, and I was doing this Tough Mudder. And there's this part where there’s this half pipe. And so you have to start way back, they had the line, and you had to run, run, run, to run up this half pipe, and you can't actually touch the top. You have to jump like kind of leap off the half pipe to grab the edge. I don't know what I signed up for. [Marissa: laughs] So I'm like, I've got this. Right? So I’m running, running, running, running, and I'm running up the pipe, right? I make that last, kind of, jump and to grab the thing, and I barely, barely get like three fingers up. [Marissa: Mhmm.] But I'm hanging on. And then they're all these people like, “Yeah! We got this!” A lot of guys do this, too. [Marissa: laughs] And they're pulling me up, you know, my brother's, like, pulling me up and I got up. And I feel like—back to cancer—you're at way back here, right? This is kind of where you start. And you're like, Alright, diagnosis, let's do this. And you're running, running, you’re doing this thing. And then you kind of get up the half pipe, and you reach for the edge, [Marissa: Mhmm.] and you don't hit it. 

Marissa Thomas: Right. That's what I say. Hopefully you grab it. Hopefully you get it. 

Jodi-Ann Burey: And then the more you keep trying, and I saw people do this, they're like, Ah, they miss it, they run back immediately, run and the more you keep going back and forth, you don't have the energy to go. [Marissa: mhmm.] But the energy of the ledge does not stop, like, Yeah! You got this! [Marissa: laughs] So I feel like, what I kind of went through what I'm hearing a little bit in your story, too, is like, you go, you go, you go, you don't reach it. And the more you keep trying, you don't reach it. And you can't give that same effort. [Marissa: Mhmm.] In my case, I feel like the people at the edge kind of stopped cheering after a while. [Marissa: Yeah, yeah, they do.] They’re just like, Come on, girl, you can do this. I can’t be standing here waiting for you to get it together. [Marissa: laughs] Right?

And, you know, what I did is I just stopped trying. And only recently, I'm running and actually, I've had enough strength to grab the edge. [Marissa: Yeah.] And I, even now, I don't even think I'm over it. [Marissa: MmMm] But I have a good grip. And that is way better than where I was running. Okay, so tell me, like, how's that landing on you? 

Marissa Thomas: It definitely is. And I would say, you know, I've heard from other women who have kind of said the same thing. You know, they're just they're trying to find themselves, like, How do I find myself? How do I get back to the person that I was? And, you know, it's that whole thing of like, Just keep going, just keep pushing through, and you keep pushing through and like you were saying, like, you got it and you grab the ledge. 

And I'm sure even for that, it's like when you got it and grabbed the ledge: who was all there? [Jodi-Ann: Exactly.] Who was there at the end? And even if there was, it may only be like one or two people. Them is your people, man. Because they will just hold on through it. It even goes to the point of where people are like, Well, you're done with treatment, but you're still always talking about it. Like, that was one of my biggest things. I remember telling one of my friends, like, “I think people are tired of hearing about this, like, they don't want to hear about it anymore.” And then I just got to the point where I'm just like, I don't care. It's part of me. It's not my life. I definitely don't want my whole life to be cancer. But it is still a part of me. There's different parts that are going to come up. There's going to be triggers that are going to come up for me that I just can't help that. And you know, either you want to hear it and you want to listen to it or you don't. You can unfollow me, you can scroll past, you could do whatever. It is what it is.

Jodi-Ann Burey: ‘Cause like, you would have left anyway. Right? 

Marissa Thomas: Exactly. Yeah. 

Jodi-Ann Burey: So I wonder in all of this, what fueled your instincts to create For the Breast of Us? And how do you balance that with having For the Breast of Us and having your life, having those things, both integrated and separate in some way? I don't know. 

Marissa Thomas: Yeah. Well, I think one of the things is just wanting to see more Black and Brown women. Like, I knew that they were out there, myself and my work partner, Jasmine Souers, we both realized that there were a lot of other women who are like us that were being diagnosed, but we didn't see them. We both found women online, particularly on Instagram, who were diagnosed, but there wasn't necessarily a group for us. And just wanting to be able to talk to other women. One of my really good friends that I met, Christina, I met her on Instagram as well. And she's a Hispanic young woman, and we both just connected and clicked. And especially nowadays, because of the pandemic, everybody's meeting virtually, or meeting each other online. And so we wanted to create a space where women of color could have a space of being diagnosed with breast cancer and sharing, like, we definitely have different experiences. 

Yes, breast cancer doesn't care who gets it. But our experiences are different. And it's kind of like what I was telling you before of like, you're going to see a plastic surgeon; do they know how to operate on women who have melanin in their skin and know that we're probably going to keloid, and what that's going to look like? So just being able to share those type of resources with each other and the stories and knowing that we're not necessarily alone. And there's somebody that else that's like you that's going through that is an amazing experience. So that's one of the reasons why we create For the Beast of Us. And it's great. We have a private Facebook group called Breast Cancer Baddies. *both chuckle* And there's over 700 women in there. It's sad to say that, you know, there's 700 women diagnosed with breast cancer. [Jodi-Ann: Yeah.] But I mean, that is the reality. And I'm sure we're only touching just the surface of it. But being able to have that group and and women can just ask any type of questions of like: Hey, before my hair fell out, it was kinky. So when it comes back, is it going to come back the same way? Or what is it going to look like? How long is it going to take? Asking resources of like, you know: I'm in North Carolina, and I'm looking for a second opinion, who is there that you guys can recommend? It's just little things like that, because as we all know, word of mouth is big, and it's huge.

Jodi-Ann Burey: Especially for us, you got to vet that person for me before I roll up in there. *chuckles*

Marissa Thomas: Right, and just finding other women who are like you whether they live down the street, or they're 3,000 miles away. It's been great to see, and you know, hopefully, once this pandemic is over, we can all get together, do that good old Black sister rock hug that we all probably want to do with each other. [Jodi-Ann: laughs] I think when it comes to what you were saying about finding a balance, what's funny is one of the topics recently in the group was somebody commenting on that they needed to find a balance, like, I don't want to be about cancer all the time. [Jodi-Ann: Mmm.] And for me, that's been a big thing, too. You go on my personal Instagram page, like, there's a little bit there, but there's not a lot. And I'm pretty diligent in that, because I feel like I do want to keep those two separate. They are integral in some places, but like, for my own personal, you know, social media, like, this is me, this is who I am. And that's what I want people to see. And when it comes to For the Breast of Us, you can definitely go over there. And you can see what work that I'm doing over there and how you can get involved too. But I definitely want to keep those separate, because I feel like you know, I have so much more going on, you know, I have things going on with my son, I have my own, you know, life going on. And like I said, there's times where they intersect each other, like in October for Breast Cancer Awareness Month, sometimes those are going to intersect each other. And that's fine. 

But I do think having that healthy balance is good, because it can get draining when you do start connecting with a lot of women. And some of them unfortunately start passing away. You know, my friend, Christina, she passed away from metastatic breast cancer. And I remember after she passed away, I was just like, I don't want anything-I mean, even before then. But even then more so I was just like, you know, I don't want to connect with other women who have been diagnosed and I just want to leave this alone. But then realizing that this is a part of my purpose and what I'm supposed to do, has kind of fueled that too. But just wanting to keep those two things separate, because they are two different things. And I want to have my own life and live, and I want to talk about drinking wine. I want to talk about Tupac, like, you know and sometimes some people don't want to talk or they don't want to hear about that and that's fine. 

Jodi-Ann Burey: Yeah. But as you're kind of, recounting the space of creating a community of people who are disproportionately going to die, particularly being young. [Marissa: Mmhmm.] I think that we, as younger people haven't had the longevity of, like, life experience [Marissa: Right.] to maybe weather some of those things because I think another community that’s similar is the elder community. [Marissa: Mmhmm.] Where you have friends that maybe you just met, or you have friends that you've known forever, and you know, maybe every other week, you're going to a funeral and all that. And so I think it's harder when—and I think it makes it a little bit, at least for me, it made me...I felt more isolated to be experiencing something that people don't generally experience until much later in life. And so [Marissa: Right.] how do you relate to your contemporaries, but, you know, Christina, was your contemporary, [Marissa: Right.] and you had so much in common. And so, can you just share a little bit more about, like, who she was and who she was to you [Marissa: Mmhmm.] in your work and who you are and how you're navigating that time? 

Marissa Thomas: Yeah. So as I mentioned before, Christina and I met on Instagram, both in the middle of going through treatment. And I see her comments on somebody’s...like another Breast Cancer Survivors post that they had made. And I just went to her page, because I'm like, “Oh, this is, you know, she seems pretty cool.” So I went to her page, and then seeing that she was diagnosed around the same time. So I sent her a message. And like, the middle of the night, probably like, two to three o'clock in the morning, I'm high on prednisone, so can't go to sleep. *chuckles* [Jodi-Ann: Yeah.] And I sent her a message and was just like, “Hey, you know, it looks like we were diagnosed at the same time and, you know, this is my name and I just kind of wanted to say hi.” And I told her then ‘cause I was in the midst of really bad depression at that point. And I even said, I'm like, you know, “I'm going through a really bad bout of depression. So I just wanted to reach out, you know, maybe we could connect.” And she immediately responded, and was just like, “Hi.” And from there, we just developed a really good friendship. We exchanged phone numbers, we talked every single day, whether it be about, you know, our side effects, whatever the case may be. And that was April of 2016 and then we met each other for the first time in person in July of 2016 after I finished chemo, we did what I called a Chemo Bachelorette Party [Jodi-Ann: I love it. I'm here for it!] *both laugh* that my friends had set up for me. Christina lived in the Bay Area and so we went down to San Francisco, because I've never been, and we did that. And we met and just clicked and hit it off. And it was just a great friendship. 

I could talk openly about breast cancer and cancer in general, where a lot of times when you look online, people only want to talk about like, the good parts, [Jodi-Ann: Yeah.] Whatever that may be. But I'm just like no...You know, what is it like when you're having a hot flash, or, you know, you got to go, your son tells you at the last minute that he needs football cleats, and you know, you don't want to put on a bra and you're hot flashing, and you don't want to put a wig on so you have to run to the store. So somebody that could just relate to that, or just relate to the fact of like, What is it like being married? So Christina was married. So what's it like being married and having to go through menopause at the age of 28? You know, menopause comes with its own set of things. You know--this may be too much for people but I'm gonna say it anyways—but how are you being married and having to be sexually pleasing to your husband while you're going through cancer treatment? 

I would just ask her stuff like that, and she would be open with it because nobody was talking about it. Right? And I wasn't married, but I'm like, I still want to know what this is like. So just being able to have that type of relationship with her. We both finished treatment around the same time and then a year later, she found out that her cancer had returned and it metastasized pretty much all through her body. I got to see her in May of 2018. She had told me that her cancer had spread to her brain at that point. And because I was in healthcare, I kind of knew what that meant, unfortunately. So I went to see her and surprised her; seen her over a weekend. And that was really good. It was nice to see her then. She apologized the whole time and was like, “I know you hate seeing me this way.” And I'm just like, “I don't care. I just said glad that I'm able to see you, regardless of whatever it may be.” And then she unfortunately passed away July 5th, 2018. 

That whole year leading up to the time that she passed away, just seeing women coming out who were also being diagnosed with stage four breast cancer who were Hispanic and Black. And I remember Christina and I had a conversation at one point and I was just like, Why aren't they researching us? [Jodi-Ann: Mmm.] Like if we're being diagnosed with some of the most aggressive breast cancer, why are we not being researched? [Jodi-Ann: Yeah.] And like for me, I was diagnosed with stage two estrogen-positive breast cancer and my estrogen was only 35%. And usually if your breast cancer is hormone receptive, it's over 50%. So mine was rare, something that they haven't seen before. 

And so they treated me like I was triple negative and triple negative is one of the most aggressive breast cancers, because it's not hormone based. So they literally throw everything at you. And a lot of women of color are being diagnosed with triple negative breast cancer, at a younger age. So that, you know, usually means if they're diagnosed at a younger age, and it's really aggressive, you know, a lot of times they are going to move to being metastatic, or stage four, unfortunately, like in Christina's case. 

So I remember Christina and I were talking about just like, Why aren’t they researching us? [Jodi-Ann: Like, you don't wanna-you don’t want to know about this?] Right. [Jodi-Ann: You don't think that's interesting to you? *chuckles*] Right. [Jodi-Ann: Interesting academic pursuit? You know?] Right. And I remember asking my oncologist about it. And even when Jasmine and I were at one of the conferences, somebody had said, “Well, you know, you guys don't want to participate.” And I'm just like, “What do you mean?” [Jodi-Ann: Mmm.] Like, you can't just take that, from your past experiences, or whatever you may think and think that we don't want to be researched. And I can tell you, that is one thing that For the Breast of Us has proven wrong. Because researchers and people now will reach out to us and say that we need women of color for this project, and we will post it in our group, and women will just start answering it. So it's like, yes, we do want to be researched, we just need to be informed of what that research is and what that looks like for us. 

Jodi-Ann Burey: You know what’s interesting? Like that connects me to the issue I'm having with Swedish, right? [Marissa: Mmhmm.] So you say, “Oh, y’all don't want to be researched.” But it's like, “Well, what happened in that interaction with me with you and y'all? *chuckles* You know, [Marissa: Right.] what, what, what was that? Like? Because, you know, maybe you're turning us away, we're coming here for help. We're coming here for care. And there's something happening where the next steps aren't proceeding. [Marissa: Right.] You know? And I think it's such an easy narrative, especially now with COVID in the vaccine—like, “Oh, Black people don't want to take the vaccine”, or “Y'all don't want to be researched”. It's just like, Whoa, whoa, whoa. [Marissa: laughs.] Slow your roll. Right? *chuckles* [Marissa: Right.] One, these things are not true. You know, and two, there's so much trauma in the healthcare system. There's so many things to undo. Right? To keep us healthy, to keep the research current and, and helpful to everyone. You know?

Marissa Thomas: Yeah, that research is only a small piece of it. Like you were saying, there's so much trauma in healthcare, like research is only a really small like 20% of that, like, if you want to impact everything that's going on in healthcare, there's a lot more that's going on in there. Like how about when your doctors come through the door, and they just see a Black woman and automatically think that you're not going to listen to them? Or that you're going to have attitudes, and then they don't want to give you all the information that you need. [Jodi-Ann: Mmhmm.] We can start there if you want to, or we get start where you know, when it comes to insurance company [Jodi-Ann: Hello.] how people automatically think when they see that you have Medicaid, and you don't have good insurance. We could start there, if you want to start there, too. *chuckles* Like, there's so many different places. 

Jodi-Ann Burey: Exactly. And then you look to us as some, there's something that we're doing that's wrong, [Marissa: Yeah.] when you have hundreds of years of bad practices, you know, persistent racism, in both interpersonal and structural interactions. It's just like, it's me against all y'all and then you’re looking at me, like I'm doing something wrong. [Marissa: Right.] The fuck outta here! *both laugh*

Marissa Thomas: Exactly. So, you know, I think, um, you know, that was some of the things and just, you know, going back to you and Christina, like you were saying, it's like being young and having to lose people. You know, we don't talk about grief a lot. We don't talk about what that looks like—especially within communities of color, and how you know, just mentally, how draining that is, instead of us just sweeping that under the rug. And so me having to deal with all of that, like, it's like, Okay, well, breast cancer, and then I have this friend that passed away, who's close to me, I've never had anybody that close to me pass away. And so having to unpack and deal with all that...I mean, it's a lot. 

Jodi-Ann Burey: How did you navigate that? When, you know, Christina was nearing the end and then afterwards? 

Marissa Thomas: I think because her and I had so many frank conversations, I don't really want to say it was easy, but I mean it was. Like, I knew when it was coming close to the end, her and I would have conversations about what that would look like. So I also think that that helps because it helped prepare me mentally and emotionally, it didn't help. I don't think that that helps anybody. And you know, in general, I always say the one thing about when somebody passes away, it's like the silence is deafening, once they're gone. And so I think for me, it just was being open with how I felt, definitely getting a therapist and talking with them about it. And just wanting to go with my own pace like you know, it's still an everyday process. You know, coming up on three years since she's passed away, I wouldn't even say that it's easier, but I think it's just talking out loud and thinking that she's there. If she just pops up in my mind and being like, Okay, she's popping up in my mind. So let me just, you know, say this, or whatever it may be. And just recalling some of the times in the moments that her and I had together, and then knowing how happy and proud she probably is..of some of this—you're gonna make—we're not supposed to cry during these things here. [Jodi-Ann: What do you mean?] It's like a rule, like *laughs* [Jodi-Ann: There's no crying on podcasts?] *both laugh* You know just...of how proud she probably is of some of the work that I'm doing with For the Breast of Us and how, you know, the one thing that I loved about her is she continued to live life. Regardless.

That's one of the things that I want to help with women, it's like, you know, living your best life, regardless of the circumstance is one of the things that I always say. And Christina definitely did that. She took a lot of pictures the last year of her life, and nobody really understood why. And now looking back on that, I see why and so that's why I love taking pictures, because I'm like, you just never know. And that's one of the moments that you can always have for people, you know? And so, you know I want to tell people, like, just take pictures, whatever they are, like, be present in the moment. Life is fleeting, and you just never know, when somebody’s time is going to come. And so I love that she just lived her life, on her own terms and how she wanted to live it. And that's probably one of the best things that I can tell people to do. Like, she took her kids to Disneyland. She's just like, I know I have stage four cancer, but I don't care. My kids want to go to Disneyland. They want to go to Universal Studios, we're gonna go, and just went. And even at the moment when she did that, like I couldn't understand why. Kind of pissed me off, too. Because I'm just like, No, like, you should be at home resting, but now looking back, and I'm just like, No, she wanted to create those memories for her kids. 

Jodi-Ann Burey: It's like she was still getting a sense of her personhood.

Marissa Thomas: Right. 

Jodi-Ann Burey: Obviously I don't know what her experience is like. But I could just imagine you-when you're when your medical needs increase, right? You get more and more medical attention, does it erode your sense of self, where you just, kind of what we were talking about before, you become a patient? Right? 

Marissa Thomas: Right. 

Jodi-Ann Burey: You're not yourself anymore. Like, you're not yourself with this condition that you’re managing. The condition takes precedence and priority over who you are. 

Marissa Thomas: Right. 

Jodi-Ann Burey: And so I could see that, at least what I'm gathering from that, is always holding yourself first. [Marissa: Mhm.] As you're kind of navigating this.

Marissa Thomas: Yeah, holding space for yourself, for sure. Because we definitely get lost, you get lost in what the treatment is, you get lost in whatever your health is, but holding space for yourself and who you are and what you love to do. I think we should definitely, like tell people that. When you get somebody that's on your cancer healthcare team, having somebody there that's like, you know, “what are you doing for you? What does your self care look like? Does that mean that you're going to get your nails done, or you know, you're going to sit somewhere and just have your own time?” But being able to hold that own space for yourself.

Jodi-Ann Burey: What do you think happens to you, like as a person, when you lose someone? Like how do you process who you are when someone who mattered to you or someone you loved is gone? 

Marissa Thomas: Oh, I don't know. That's a good question. Like a really good question. You know, in the blog, one of the questions I had asked in there was like, how do you process who you are, and then also the person that you've lost in that process too and I was meaning that only not for yourself, but like people that you also lose along the way? And I think it's a question that I'm still trying to answer, really. And, you know, it's just a day by day process. And just realizing like who I am, the relationship, definitely holding the relationship that Christina and I had close to my heart. There's definitely little things that will pop up in my mind where I'll remember her. One of the things that we always did is we’d always see the number 11:11—her birthday is on November 11—so whenever we would see that we would always say, you know, call each other up or text each other and be like, “make a wish friend!” So whenever I see it now, I still say that out loud. Because to me, it's like she's still listening, right? And so you know, she can make a wish, and I'll make a wish on her behalf and for myself too. 

But I think just remembering who that person was and who you are helps carry you kind of through all of that grief. And grief is like, it's a cycling process. I know Vanessa Bryant, Kobe Bryant's wife, had kind of written about that recently, too. And you know, there's some days where there's good. There's some days that are bad. I hate using the cliche term of like, you know, just pushing through but just moving through that; moving through grief, because it is a cycle. And there's always going to be continuously be that. And I think once you do realize that it's easier cuz I think people just think like, you're just supposed to go through this and then you're done. And then that's it. And it's just like no, like, that's bullshit. That's not—it's not how that goes. So, yeah. 

Jodi-Ann Burey: Yeah. It's interesting you bring up Vanessa Bryant, because I was listening to something and they said, if they had done COVID shutdowns earlier, then Kobe Bryant would still be alive, because he wouldn't have gone to the basketball game, or like been around so many people. 

Marissa Thomas: Okay. *both laugh*

Jodi-Ann Burey: *laughs* And so like, as I was thinking about that, sometimes in the cycle, I don't know if you start kind of going through counterfactuals? Or maybe if I did this, or maybe that then things went right. Maybe that's it, and it can be maddening. 

Marissa Thomas: It definitely is, like, you wonder like, Oh, you know, maybe if I, like in Christina's case, like maybe if I found a doctor for her to get a second opinion at, maybe she you know, she would still be here or, you know, maybe if I told her this, or I told her that, but like, you can't. You'll get into a whole rabbit hole with all that. 

Jodi-Ann Burey: Yeah. 

Marissa Thomas: So like, there's no reason to do that. Because you're in this moment right now. So you can always think back of like, what she wanted to do, what she could have done. I mean, even for me recently, like I just recently went through a breakup, right? That's a whole ‘nother topic. *laughs*

Jodi-Ann Burey: Oh, listen. We could talk about it after. *both laugh* I don't even know the situation. But I know this person was trash. I just know it! *laughs*

Marissa Thomas: Thank you. *both laugh* But just realizing like, you know, if we talk about the relationship, like that served a purpose, right. So even with, you know, me and Christina, like, I think I came to the realization that relationship that me and Christina had definitely served a purpose. She helped me in more ways than I can even imagine. One of the things that she helped me with was just being open with being diagnosed and my journey. Like when I was diagnosed, I was angry, I didn't want to talk to anybody about it. All of my social media was private. Only if you were close to me would you know what I was going through. And now everything's open, like I'm open book. You can ask me anything, I'll tell you. And she was she was that, like, she was always open, she was real and honest with what she was going through and who she was. And she used to always tell me, like, just tell people, just be you. Be your real authentic self. And people are going to love you for that. And they're going to navigate that. 

And so just realizing that those relationships definitely serve a purpose. There's always a lesson in everything. And just being okay with that, instead of wondering what if or what the past is, because all you're going to do is just keep going over and over that in your mind of what you could have done, coulda, shoulda, woulda. But, Coulda, shoulda, woulda is not gonna help you today, tomorrow or the next day. 

Jodi-Ann Burey: That is a sermon. [*Marissa laughs*] If that if, if that could ever just land in my head? [*Marissa laughs*] My whole life would be so different. *both laugh*

Marissa Thomas: Right? Because you can always go back and think, Oh, well, what if I did this? Or what if I did that? And I mean, it's not gonna change what today is. 

Jodi-Ann Burey: Yeah.

Marissa Thomas: We don't have a time machine.

Jodi-Ann Burey: No, we do not. No, we do not. Like Christina was, not just a friend and a kind of comrade in this struggle, but like a support, like a huge part of your support networks as you were navigating? 

Marissa Thomas: Yes, everything. 

Jodi-Ann Burey:  Did you find it difficult to be supported? I know, you had a specific relationship with Christina. But did you find in that time, was it hard to be supported, and Christina's kind of broke through that, or what? 

Marissa Thomas: I think it was hard to be supportive on both ends, right? Because there's only so much that you can talk about to other people, and not realizing like whether they would get it or not. I know my best friend used to always say like she used to say, “I can appreciate the relationship that you and Christina have, because I know that you could talk to her about things that I can't understand.” And I think that's one of the biggest things that we have at For the Breast of Us is because these women can connect with other women who just quote unquote, “get it”. They get what they're going through, they get how they may feel, they get like, you know, yes, I'm married, and I'm going through cancer, and I have kids, but I just don't want to today. You know, just those little things. 

So Christina did definitely fill in the gap. For me, I think with my other friends and families, like there's parts and pieces that they could get, and they could understand, but they can only understand it to a point. And sometimes you just didn't want to talk to them about certain things. I don't want to have to talk to somebody about how I'm missing my hair today for their response to be like, but it's gonna come back. Fuck that. 

Jodi-Ann Burey: Exactly. *both laugh* 

Marissa Thomas: I miss my hair. I don't need you to tell me that it's gonna come back. I know it's gonna come back. But at the same time, today, I want to be mad about my hair falling out. And so I want to be able to have that space. And you just don't want to have to say that to people, right? You don't want to have to come out and be like, so this is my disclaimer, I want to talk about my hair falling out and how pissed off about it. You just want to be able to word vomit all that shit out and then just be done. 

Jodi-Ann Burey: Yeah. So, recently, I've been needing a lot of help with stuff. And I'm calling people saying like, “Hey, can you help me with this?” I’m teaching this new course at UW, And I've never taught before. So I'm asking people who teach like, “Oh, can you help me with this? Can you help me with that?” 95% of the responses that I get are, “You got this, Jodi-Ann.” and “It's gonna be so good. You got this. This is so great.” And it's just like, so I didn't call for encouragement. Right? 

Marissa Thomas: Right. 

Jodi-Ann Burey: Like I actually called because I wanted some help, which asking for help is already challenging for me. 

Marissa Thomas: Mmhmm. 

Jodi-Ann Burey:  And so when I don't get that help back, I just been, I'm just like, Well, why am I even asking for help in the first place? Right. *laughs* But there was a point in time when, like, I couldn’t walk, like, I needed help. Right? [Marissa: Right.] And even then, I was trying to, like, I got this, you know?

Marissa Thomas: Which we always do, right? 

Jodi-Ann Burey: Yeah. So I'm curious for you, like, how did you react in the times when, like, you actually need help and you wanted something back? 

Marissa Thomas: And like if I got it or not?

Jodi-Ann Burey: I don't know if you got it or not. *both laugh* But I think like, as we engage with people who maybe don't fully understand our experiences, maybe people are offering help, or we're asking for help. And we're always I feel like there's this, there's always this miss, right? It's like, Oh, I thought you needed this, but I didn't need that. It’s like, Oh, I want this. But no, I don't want that. Like, I feel like, I feel like I'm constantly missing. Between me asking and people offering, it just doesn't always click. 

Marissa Thomas: Mm hmm. And I don't really know where the disconnect is. I mean, I guess what if it could be like, people just aren't really like listening. You know, like, they're, they're not actively listening to what you're saying, they're listening to respond. [Jodi-Ann: Mhmm.] If that makes sense. Or they're listening, you know, like, they hear that you need help. But then they're like, while you're talking about maybe the help that you need, they're already thinking about what it is that you will need instead of listening to what you actually need. And you like you said, yeah, the whole encouragement piece, it's just like, Okay, well, let's move that out of the way. But let's, what I actually need for you to do is like, listen to what it is. Yeah. And I mean, for me, like, I have a hard time asking people for help anyways. I've always been that way. I've gotten better with it because of breast cancer. But I would just hardly, I just wouldn't say anything. So people would just have to do something, because I would just be like, I'll just do it on my own. I'll wait till I get there. 

And I remember my son, he ended up yelling at me one day because of that. My dad was gonna spend the night and he was like, “Are you okay?” And I'm like, “Oh, I'm good. You can go home, you don't have to spend the night,” and I ended up getting sick in the middle of the night and just like throwing up all over the place. And my son comes into the room and he's helping me feel better. And he just starts yelling at me. He was like, “See, this is why you should listen to people when they tell you that you need help, instead of always saying you could do it yourself.” And it made me laugh at the moment. But I was like, He's right. Like when people are offering I just need to be like, okay, yes, this is what I need. And so I think I've gotten better with that now, instead of just being like, Okay, well, I'm just a strong person, I could just do it myself. Now, if people were just like, “Okay, well, do you need this?” “Yes, I do need this.” Especially when it comes to For the Breast of Us, because Jasmine and I are the only two people doing all of the work for this, which is a whole nother topic that we could talk about, because I don't think people realize how much work goes into it. 

Jodi-Ann Burey:  I hear it. I'm feeling it too. I'm like, Oh, yeah, when I do the intro for the podcast, I'm like, “Our guest today.” “Our?!” Ain’t no “our,” I'm the only person behind this operation. *laughs*

Marissa Thomas: Right. 

Jodi-Ann Burey: It's a lot of work! *laughs*

Marissa Thomas:Yeah. So now being easy with that and just being like, okay, boom, like you can help with this. We need help with this. Let's you know, divvy out this. And you know, a lot of that takes trust, you have to have trust in the other people, but sometimes you kind of just have to just let it go. And if people are gonna fuck up along the way, they're gonna fuck up regardless. So…

Jodi-Ann Burey: Well, I want to go back to your son, since he called you out when you were already down? Kicking your mom while she's down, I don’t know about that. 

Marissa Thomas:*laughs* Kids are good for that, man. They will kick you when you're down. They will show you like, [Jodi-Ann: Oof.] They will show you exactly who you are. 

Jodi-Ann Burey:  But it's interesting because you had a, you know, conscious, thinking child, right? [Marissa: Mhm.] That knew what was happening, that had access to the internet. You know, you weren't managing an infant and like dealing with breast cancer. He knew what was going on. [Marissa: Mhm.] And so, you know what happened when your son saw your head without hair for the first time. 

Marissa Thomas: He didn't care. I cared more than he did. He didn’t care at all. *both chuckle*

Jodi-Ann Burey: Didn’t even hide it from him. I feel like it’s obvious,

Marissa Thomas: *laughs* Right. But I tried to. Like, I thought I was hiding something and he's just like, Okay lady. I remember even getting my hair shaved off and like, you know, I have long hair, and I had really long hair. And then of course, I had to just shave it all off, because it was coming out. And even coming home, just making sure that I had a covering on my head. So whenever I was around him, I would never show him my head being bald, because I had this stigma in my mind of like, if you're sick, then you're not strong and you're weak. [Jodi-Ann: Mmm.] You can't take care of the people around you--which is definitely a stigma that we as Black women definitely have that we need to work on. *chuckles* [Jodi-Ann: Yeah.] You know, I ended up having a hot flash one day, and I just ripped the hat or wig that I had on my head off. And my son came around the corner, and we both kind of stopped and he looked at me and I was just like, “So like, are you okay with this?” And he's just like, shrugged his shoulders like, “Yeah, I don't care.” And then from that day on, I'm just like, Okay, well, cool. 

That was a good opening for me to just be like, you know, this, it's all me. It has nothing to do with him. But you know, it's just I know, I looked sick, I didn't have any hair on. You know, even if I would go—if I was to go back—I probably wouldn't even get a wig, I would just rock my bald head and just be okay with it. But I know that that also takes some time. Because you know, you're being ripped of everything at that point. It's not like it's a process of you being like, this is what I'm choosing to do. One thing about kids that I’m realizing with me having breast cancer is they're way more resilient than what we think they are. And I think just, you know, giving them bits and pieces of information at a time when you're ready, and when they're ready. But they pick up on stuff, so regardless if you want to tell them or not, like they're gonna know. 

Jodi-Ann Burey: Oh, man, yeah, I still talk to my niece. She's 17 now. And what I found out is that my sister was trying to be hush hush about the conversations that she was having in the house. [Marissa: Mmhmm.] And my older niece, who's 21 now, so she was 18 at the time...She's on Instagram, which I had forgotten. So she saw and then asked her mom about it. And so the younger one doesn't have any direct information. No one has said anything to her yet. She's not on the internet, like any of that. [Marissa: Yeah.] And then, I think apparently, she just like, stopped her parents one day and confronted my sister in the kitchen. She's like, “What's going on with Auntie Jodi? Does she have cancer? [Marissa: Mmm.] And I'm sure my sister was shocked. Like, I mean, “Who told you that?”  But especially when they're teenagers. I think even at younger ages, like, they'll always kind of know that something is not right. Like something's different. [Marissa: Right. Mmhmm.] And they'll put the pieces together, so you might as well. She--and I talked to her about this—but she said she felt like people were lying to her. [Marissa: Yeah.] Like that betrayal. [Marissa: Mmhmm.] It wasn't enough to say, “We weren't going to tell you. We were just trying to, duh, duh, duh, duh, duh, no. She felt lied to. 

Marissa Thomas: Which I get. Because they're like, everybody else knows, how come I don't know? [Jodi-Ann: Exactly.] Why are you hiding this for me? I ended up having to—my hand was forced, and I ended up having to tell my son before I wanted to. [Jodi-Ann: Mmm.] Because some of his peers found out because they heard their parents talking about it. [Jodi-Ann: God damn. *chuckles*] Right. So once I heard, I was just like, okay, so I have to sit him down now and tell him. [Jodi-Ann: Yeah.] Because the worst thing in the world is that you go to school, and you hear it from one of your friends that my mom has cancer like—[Jodi-Ann: No.] that would just crush his whole world. So I ended up having to tell him before I wanted to. But you know, it happened when it was supposed to happen. [Jodi-Ann: Yeah.] And I'm glad that I was able to actually sit him down and be like, “Okay, so this is what it is...” 

Jodi-Ann Burey: How did you say that? What were the words?

Marissa Thomas: I just, I told him, you know, “I found out-I found a lump in my breast and that we found out that it's breast cancer, and I'm going to get the treatment that I need. And I'll keep you informed all along the process.” And it was really, it was really formal like that. And I think it was a lot formal, more so—I know. *chuckles*

Jodi-Ann Burey: Wait, is this school? What's going on? *both laugh*

Marissa Thomas: Because I think, because my dad was there too, and so, my son was just kind of like, “Oh okay.” And then once my dad had left, I’d seen he was sitting on his bed, he was crying. And he said, “You know, I don't want to lose you.” Because at the point, at that time, his dad was in prison. [Jodi-Ann: Mmhmm.] And so it's like, so if my dad's away, and I can't see him, and then you have cancer, and to me cancer means you're going to die, then I'm just not going to have anybody. And so then that's when we had like, you know, a whole talk about it. And it's just like, you know, I'm gonna be okay. And, you know, I explained to them, like, I had an aunt who was diagnosed with breast cancer when I was about 17-17 or 18. So, you know, I kind of explained to him, I was just like, you know, like, “Aunt Betty, she was diagnosed with breast cancer. You see, she's living a long life. Like there's all kinds of treatments, there’s advancements, you know, you'll be here you'll know what's going on. So I think just having that open conversation with him was big. And that helped for both of us. And then him just being able to see me. Like, not hiding the fact of like, necessarily that I was sick, just laying on the couch and not feeling good. 

And, you know, he was going through school, of course. During that whole point in time, and he did really good in school. Which, you know, had a really good support system. I-He was in therapy before that, so I made sure that he was still going to see his therapist, so we had somebody to talk to. I think everybody else that was around him was checking in with him as well. So I think instead of putting the burden on yourself as a parent, and making sure that they're okay, setting that they have other people. I mean, therapy, everybody should do therapy. Like, I don't care who you are. [Jodi-Ann: Amen.] You can get your kids in therapy, like that is a blessing, because there's things that they're going to talk to their therapist, that they're not going to want to talk to you. Just the same as us being, you know, people. Like, I'm gonna talk to you about some things that, you know, I'm gonna talk to my therapist in a different way, so.

Jodi-Ann Burey: In the moments where you allowed yourself maybe to not, kind of put on this front of strength in front of him, like, did you—were you okay with that? Or did you feel like—similar to the hair thing—if I'm on the couch laid out, that he'll think that I'm weak, or I think that I'm weak. 

Marissa Thomas: I think I was forced to get okay with it. [Jodi-Ann: Mmm.] You're so sick, and there's only so much you can do. And just, you know, realizing, like I just I can't move today. So I'm here on the couch, and this is what he's going to see. And you're just going to have to see that. And I think being forced to be okay with it made me even more okay with it. Even now, it's like, you know, if I have surgery, just being up and telling him up front, like, “Okay, I'm going to have surgery, you know, in a couple weeks, this is what's gonna happen...” You know, like, so I have to get colonoscopies every year. *chuckles* Because I have a genetic mutation called Lynch syndrome that predisposes me to colon and ovarian cancer. So I have to get a colonoscopy. And so when he was home from college break, just this past holiday, I was like, you know, “Hey, I'm going to get this colonoscopy.” and he was just like, “Okay, well, What's that for? [Jodi-Ann laughs] Like, why are we doing this?” [Jodi-Ann: Let me see your chart, mom. Bring the chart.] *both laugh* And so, you know, just explained it to him the reason why then he's just like, “Okay.” And then I get home and he's just like, “Okay, you good? Everything's good? Everything checked out OK?” *chuckles* Just like, so he's more even involved, too. Which is funny, because it's like, you're only 18. 

But I think also having a parent who was diagnosed, you're always wondering and just being like, okay, so are they okay? And I think it's, it's okay. And it's healthy for your kids to be able to check in with you and make sure that you're doing okay. Instead of just brushing them aside, and like, “You don't need to worry about this, you're a kid.” No. [Jodi-Ann: Yeah.] They need to be a part of it. Because in the long run, that's also going to help with their healthcare, too. Right? [Jodi-Ann: Exactly.] They're going to be open and willing to want to talk about these things. Or something's not feeling good with them, talking with their providers or you and be like, “Hey, I'm not good.” You know, one of the things that I tell, which you can talk about you can put this in there, I don't care. [Jodi-Ann: Okay.] But with my son, it's—I tell him, I'm just like, “Look, you're having sex or whatever. If you're going to the bathroom and you feel like something's burning, let me know.” [Jodi-Ann: Yeah.] “We can get you to the doctor.” So then that way, you're not just sitting there, like--people do dumb stuff, especially dudes. They do dumb shit all the time. [Jodi-Ann: That is a fact. *chuckles*] Like, don't think that you just can pour some like peroxide on your dick, and it's gonna be okay. No. *both laugh* Let's have a conversation, you need to get to the doctor. So it's just being open with them with healthcare. Because people of color, we need to be that way. 

Jodi-Ann Burey: And you need to see it modeled. Like, it can be done, this is how you navigate it. [Marissa: Right.] I think I was sharing on another episode or something, but the first time I ever had one-on-one time with a healthcare provider was when I was in my 20s or something? Like, even as a teenager, I never was able to speak to a healthcare professional just on my own. [Marissa: Oh.] Which means, no one's asking me, which they know they should but they don't because they also feel uncomfortable like asking, “Are you sexually active?” in front of your parents. [Marissa: Right.] Or you know, there are a lot of things that you're not addressing [Marissa: Mmhmm.] when you don't have that time. And so, like I remember the first time my doctor asked me if I was sexually active, I immediately wanted to say no, even though I was. [Marissa: Right.] To hear you just kind of modeling that openness, particularly when it comes to our bodies when it comes to our healthcare. These are life-saving behaviors, especially for men. Men have really, really poor health-seeking behaviors. I'm convinced that any man, if they don't have a woman in their life, I don't care if it's your spouse, your friend, whatever. If you do not have a woman who loves you, you will die. *both laugh*

Marissa Thomas: Right *chuckles* because you just don't-you're not gonna go to the doctor, at all. Like, not at all. Not even a little bit. *Jodi-Ann laughs*

Jodi-Ann Burey: My cousin's wife, like one of his one of his new wives, *laughs* she told me, she’s like, “He hasn't been to the dentist in 15 years. I had to schedule the appointment for him.” I’m like, “You would die *laughs* if you were not married to this woman.” *laughs*

Marissa Thomas: Like, oh my God, I'm surprised his teeth aren’t falling out of his mouth already. And then like besides that, do you know that like gum disease is like the number one thing of where you start getting all these other ailments that are going on in your body?

Jodi-Ann Burey: No, you just said that, I'm like, man, let me go brush my teeth. *laughs*

Marissa Thomas: Lord today, like what is going on? [Jodi-Ann: Oh my gosh.]  Just being open with, you know, modeling, like you said, modeling that behavior or wanting to have an open conversation when it comes to your doctors. You know, even in the clinic that I work in, I get-we get parents all the time, especially moms. Like moms, y'all gotta stop doing this with your boys, because it is horrible. But especially moms who are just emailing and calling us all the time like, oh, little Jimmy won't do this and, you know, I just want to make sure... And I'm just like, if you don't tell the little Jimmy to get on the phone and start talking telling us about his symptoms instead of you. [Jodi-Ann: Yep.] Like, you're giving it, you're giving it to me third hand. I want to talk to the patient and see what's really going on. [Jodi-Ann: Yeah.] Because of course, you're going to be on nine, when he's probably only on four. [Jodi-Ann: Mmhmm.] So, let's just really hear. So like, yeah. Oh, my goodness, that's...I cannot. That is one of my pet peeves when talking with moms because I'm just like, y'all gotta stop this. Because not only that, like how are they going to learn how to navigate life? 

Jodi-Ann Burey: Yes, navigate life, advocate for themselves, understand how to deal in really stressful situations where maybe everyone else has more power than you, seemingly. [Marissa: Right.] Right? Like, you need to be able to practice those skills. And so when people say to me, “Oh, Jodi-Ann, you're so great at this.” Right? Like, I’ve been fighting racism, like forever! [Marissa laughs] Like, I'm used to advocating for myself. Like, this is just, not—everybody doesn't live their life this way? Oh, *chuckles* [Marissa: Right.] I didn’t know that. *chuckles* 

I had a cyst on my ovary when I was 15 and that was really stressful. Because I was also tapping that semester. And so that kind of up and down. And there's, I’m like, Oh, this hurts. And like, “Jodi-Ann, what's wrong with you?!” And I'm like, “No, this thing hurts.” and just having to one, get people to believe me. Which I think this is like, chronic trauma of just life [Marissa: Right] as a Black girl, a woman of color. Like all that stuff, right? [Marissa: Mmhmm.] Finally, had escalated to the point where I was gonna get an ultrasound. I was like, Oh, my God, ultrasound? I'm not pregnant. I’m fifteen, I haven’t even had sex yet!  *both laugh* And I go and get this ultrasound, I have to drink 32 ounces of water, right. [Marissa: Oof.] Girl, I'm in the doctor's office, and there's all this delay and all those kinds of...I have to go, I have to go to the bathroom right now. I have to go. So my mom, she's up there. Yeah, she's nice. And she's like, “Hey, you know, can we go in? You know, we've been waiting for a long time...” She comes back and we're still waiting. Me, fifteen. I go up to the counter, I say to the woman, I said, “Listen, I'm gonna go to the bathroom right now. And this whole appointment, like everything is not happening. Okay, so I need to go to see the doctor, or I'm going to go pee.” [Marissa: Right] And then we went in. *both laugh* 

So I feel like when we have successes advocating for ourselves—particularly against you know, these power dynamics—then you keep doing it, you keep repeating behavior that continues to support you. Right, [Marissa: Right.] And then at the same time, people are like, you're too strong. You're too this, you're too that. I'm like being strong, whatever, consistently saves my life. [Marissa: Right] So sometimes, at least from me, this is something I'm working through with my therapist, is like trying to let that go.

Trying to find the right balance between the advocacy and not feeling like I have to be the project manager for the project all the time. Right, [Marissa: Right. Yeah.] And so can you tell me about how you found the lump in your breast and what that whole process was like when it started to unfold? When you find this thing, and now you have to tell people with MDs behind their name about it, to be able to get what you need. And I'm specifically asking about this because I kind of want an excuse to say that “lotion saves lives.” That's the T-shirt that I want. So I gotta put that in the podcast. *both laugh*

Marissa Thomas: Yeah, so if you do, you know I need one of those t-shirts. 

Jodi-Ann Burey: Okay, I got you. 

Marissa Thomas: I'll post you on my Instagram. I'll be an influencer for you that day. 

Jodi-Ann Burey: Perfect. Perfect. So tell me about like, how you how you found your lump and just kind of that advocacy process to get the things that you need from the healthcare system. 

Marissa Thomas: Mm hmm. So I would say about two weeks before I actually found my lump, I had a physical and when my doctor was doing the breast self exam, she kind of felt something in my left breast and her and I both kind of paused and she just said, “Oh, you know, probably nothing. You've been working out a lot, you probably just strain something”. I remember even texting my sister as I left that appointment and saying to her, like, “Oh, you know, my doctor thinks she felt something in my breast” and my sister kind of just being like, “Oh, it's probably you know, you're close to your cycle. It's probably something you know.” So just blew it off. [Jodi-Ann: Yeah] A few weeks later, as I'm getting out of the shower and putting lotion on I felt this huge. There goes the lotion reference, a huge mass, in my left breast. And I knew right away that it was cancer. Even I still tried to talk to myself in my mind, like, oh, maybe I have like a clogged milk duct, but my son's 12. *both laugh* Like, just trying to, you know, rationalize. 

I will say for myself, I know that I don't have-I did not have the normal...when it comes about of finding like a lump in my breast, just because I knew that this needed to be taken care of immediately and not letting it just go through. So I found my lump on a Saturday. That Monday I called my primary care office and said, “Hey, I found a lump. I need this to get checked out”. They told me that they probably couldn't get me until Thursday or Friday. And I'm just like, “No, like, this is urgent. This needs to be looked at immediately.” So the primary care office that I used to work at, I called them and talked to the office manager and said, “Hey, I found this lump.” And she was like, “We can get you in tomorrow.” I'm like, good, got it. 

Yeah, that Tuesday, I went in. Even I seen the nurse practitioner and even she was just like, Oh, well, the one thing that she did say to me, which I'm going to tell providers, you got to stop tellin’ this to your patients...When she pressed down on it, she was like, “Is it kind of tender,” and I'm like, “Yeah, you know, it's tender a little bit painful.” And she's like, “Oh, well, it's not breast cancer, because breast cancer is not painful.” Hello. [Jodi-Ann: I didn’t know you were doing diagnostics, you know, like this. Okay.] Yeah. Right, which I'm like, stop telling people that because that's not true. I've heard that from plenty of women before. [Jodi-Ann: Oh, that breast cancer doesn't cause pain.] If the lump that you're feeling it's painful, then that's not cancer. I've heard-they've told that to a lot of women. 

Jodi-Ann Burey: I've heard that too. And I was experiencing a lot of pain for years and years and years. And I said, I think it's breast cancer. I think it's breast I just had this thing. Like I think it might be breast cancer. And they said it wouldn't be breast cancer, if it was painful. You're just and they excused it and excused it. Well it was cancer, it just wasn't breast cancer. Sure, like, like this whole, like, cancer pain relationship, you know, is different in different parts of the body. But like what you're saying don’t tell people that because also pain is very difficult to describe. [Marissa: Right] You know, a lot of people have different descriptions for pain. And so you want to say is that tender? Okay, what does that mean? And so, yeah, pain is too general to just kind of discount people off of for cancer, it doesn't make any sense. 

Marissa Thomas: And it could be tender or painful because for the past three days, I've been pressing on it trying to figure out like, what the hell this is in my breast. 

Jodi-Ann Burey: This is a fact. *laughs*

Marissa Thomas: Like, hello. So yeah, so she told me that. But she was like, “We'll send you in to get a mammogram.” So the one thing that I love—and I always tell people like this is why you should not burn bridges—they got me in the next day for a mammogram. And my old boss was the office manager and the nurse practitioner, both of these women that I used to work with, fought tooth and nail to get me in at Swedish to get me a mammogram the next day. Because if anybody knows, like, that is not normal at all. [Jodi-Ann: Oh, yeah]. Squeezed me in and I got my mammogram, they were like, well, we're gonna do an ultrasound too. And so my other thing for medical providers is I'm having my ultrasound and the woman is paying a lot of attention in my underarm and because I'm in health care, I'm like, that's my lymphnodes, like this isn’t good. [Jodi-Ann: Yeah.] So she gets done and she was like, “Okay. Yep, I'm pretty sure this is cancer.” [Jodi-Ann: Okay, just like what? Can I get the results?] Right? So I'm just like I said, “So how do you know this?” And she said, “Well, because you know, when you see a tumor on the ultrasound, it has jagged edges around it. So if it's smooth that's like a cyst. But a tumor is going to be jagged”. And she's like, “Yours is jagged. So you know, I'm pretty sure this is cancer.” Again, I have not had a biopsy, so you cannot say... *Laughs* That took me to a whole tailspin [Jodi-Ann: Yeah] because she's an ultrasound tech. She's seen all of these before. She knows what she's talking about. So I go out in the waiting room, and I just started bawling. And I told my sister, “I'm like, they're telling me it's cancer. And they were like, well, let's set you up for a biopsy”. They wanted to do a biopsy in two weeks. And I'm just like, No. For me, at this point time is of the essence. 

Jodi-Ann Burey: Yeah, especially because you just did the breast exam. And it felt different to you two weeks later. So I don't have two weeks.

Marissa Thomas: Right. And it doubled in size. So for me, that's what I'm knowing because when I had my breast exam with my primary care provider, at that point, it was really small. Two weeks later, it had grown to like four centimeters. [Jodi-Ann: Yeah.] So I'm just like, mmm, no. [Jodi-Ann: Can’t wait two weeks sis, It's not gonna happen.] Right.

So they scheduled me for it. And again, I called my old office manager whose name is Barb. And I told her, I'm like, “Look, can you try to get me in sometime sooner,” and they did. They got me in that Friday. This is why when you have you develop good relationships with people—don't burn bridges, like they will treat you well. And they will help you get into the things that you need. And so they worked some magic got me in that biopsy that Friday. And I remember what's funny—which I'm just now remembering—is when I went in for that biopsy, when they did the ultrasound, they seen the tumor, and they thought they seen something underneath my armpit. And usually what they do is they have the same person, the ultrasound tech, do the biopsy at the same time since they’d seen everything. But I had to have somebody else because they're just seeing something different. So when he's going in to want to do the biopsy underneath my arm, he's like, I don't see what she's seen then. So he made her come in from her appointment to look and see. She was like, I can't see it either. Thank God. So whatever that was that she’d seen, it just wasn't there at all anymore. Because at that freaked me out cuz I'm like, so it spread to my lymph nodes at this point, right? [Jodi-Ann: Yeah]. And from that point, my whole treatment regimen just kind of was like fast paced. I remember that weekend, me calling or texting people and letting them know, like, “I probably have breast cancer, I'm not gonna know till Monday.” 

So I think for me, that was mentally me preparing them. Because then when I got the news that Monday that it was breast cancer, I didn't want to talk to anybody. [Jodi-Ann: Yeah]. And I think mentally for me, that's what I needed to do. Because I didn't want to have to tell people over again, once I was diagnosed. So it's like I'm diagnosed, let me deal with this, because I have a lot of shit that I have to process. So I told everybody that weekend. 

And then Monday, the doctor, her name is Dr. Gramko, you guys should see her. She's amazing by the way. She actually called me herself because she got the results. And one of the things that she said is, “I hate that we have to write this chapter in your story. But if we're gonna write it, let's make it a damn good one.” She said, “But yes, you do have breast cancer.” And like they set me up. I think that was a Monday by that Wednesday, I was in with the breast surgeon, talking about what I wanted to do. And then I seen the oncologist, either the next day or that Friday, but everything was really fast, quick, which is what anybody should have. It shouldn't be just because I work in healthcare, and then I have relationships, that I'm able to have that type of treatment. I want all people to have that type of treatment. I don't take it lightly, that I have that type of access. And for me, like, when we're talking about privilege, which I try to tell people about this because nobody understands privilege, right? That's my privilege. [Jodi-Ann: Yeah.] I work in healthcare. So I have that privilege to be able to have these type of relationships with people. So I can get health care really quickly. Like if I have something going on, I can text the doctor I work with right now and ask him about it. And I'll get an answer. People don't have access like that. So that's my privilege. And so [Jodi-Ann: Yeah.] my admit, it went through really fast paced and quick. And I loved it. I mean, I wish everybody could have that type of treatment for it. 

I ended up getting a second opinion, which I do recommend anybody who's diagnosed with a life threatening disease, they definitely get a second opinion, I went with the second oncologist. And that was just because of asking some people within the community what they thought where I should get my treatment at. Both oncologists, their treatment plan was pretty much aligned the same. But the second oncologist I just liked her bedside manner, it was a woman. And I would rather have a woman than a man. And she was at Seattle Cancer Care Alliance. So that's one of the reasons why I went there. And so yeah. 

Jodi-Ann Burey: I'm still reflecting on the, you know, “Making sure this chapter in your story is a damn good one.” I think that's so touching, because everyone can get, the book is still being written. You know, people say that all the time. But you never know what the, you know, what people don't say when they say that, Oh, your book is still being written is like, Oh, you don't know what chapters are? You don't know what's coming, right? This is not some nice story that continues to unfold. Like there's, there's some serious moments in there. And so when you reflect, I don't want to say back because, or maybe it is back. I don't know, like when you think about this chapter in your story. Is it a good one? Is it closed? You know, having moved on to new chapters? Is it being, is it in a Google doc and is being written? *chuckles* You know, that chapter, that Doc is still open? You know [Marissa: Mmhmm.] maybe, how do you reflect back on the story of your breast cancer experience?

Marissa Thomas: I would say that that chapter is-that chapter’s done but I've definitely like, have went on to maybe like a sub-chapter now. Tthat's where like my advocacy comes in. And for the rest of us. When I finished radiation, I remember saying like writing in my social media posts like this chapter’s closed, I don't even want to write like an addendum. I don't want to go back and you know, revisit it. [Jodi-Ann: It’s out. *chuckles*] Yeah. So for me, I would say that chapter is definitely done. I think I needed to go through that. There's definitely a lot of lessons that were learned through that whole process. And I think now I'm just writing what this part is. Within, you know, my whole book of life, I guess you could say. And I'm okay with that. I'm okay with the chapter, I'm okay with how it went. I don't regret anything during that process. It just, you know, it is what it is. I wouldn't wish cancer on like my worst enemy. I'm sure everybody could probably say that. But definitely. 

Jodi-Ann Burey: I have a couple enemies. I'm just saying… 

Marissa Thomas: *laughs* Would you wish cancer on them though? 

Jodi-Ann Burey: Alright. Do you want me to be transparent? [Marissa: *chuckles* Yes.] I have definitely wished a severe cancer on one person before. 

Marissa Thomas: Okay. How's that working out for you?

Jodi-Ann Burey: *both laugh* Okay, quick story. Spinal cancer, disability, resentment, darkness, whatever. [Marissa: Mmhmm.] In that time, I had some friends who I felt very abandoned by in a very direct way. She literally wrote me an email saying, I've been suffering for too long. And I don't care about anybody else. [Marissa: Oh.] I just learned how to walk three weeks ago. *chuckles* So, her and her girlfriend, they surf a lot. And I would spend a lot of time in my journal, wishing that there was some devastating accident, or that she found something that also created the level of physical trauma--similar physical trauma—that I was experiencing. And I kept that very close to me, wanting this. 

Fast forward a year later, someone that we both know, messaged me on Instagram—and I think they don't know that, you know, I don't talk to them anymore. And he said, “Yeah, you know, Holly had this like, freak accident surfing. The surfboard lodged into her back near her spine”. [Marissa: Oh my God.] And that is like, this is a normal response. “Oh my God!” And I laughed. [Marissa: groans] And when I realized that that was in me, I was like that's a… I laugh when I'm stressed, but that it feel like a stress laugh. That felt like a, I don't believe I manifested that like, oooh, right? Fast forward a year after that, I saw this bitch riding her bike in Cap Hill. I was so mad!

Marissa Thomas: *both laugh* Man I'm still dealin’ with all these side effects and stuff. And here you are just like la la la la la…

Jodi-Ann Burey: Riding your God damn bike up a hill! Up a hill. I would never bike up a hill. And so when you asked, Would you really wish that? I do wish that I didn't wish that. Because that took up so much energy [Marissa: Mmhm] to be wanting this for her. [Marissa: Yeah.] So I'm kind of a little bit closer to your side of like, I don't want to wish this on people. Like this is really, really bad. And I wouldn't wish this on my worst enemy. Because the process of wishing that on someone that you hate or someone that you're not in a good place with, does not help you. [Marissa: Yeah.] And I'm slowly realizing that. I think like, yesterday I decided that I should let it go. *both laugh*

Marissa Thomas:  You know, it's all a process. As long as you're making the process, that’s all. That’s good. 

Jodi-Ann Burey: But anyway, back to your point. Good person! Who’s so wonderful and wouldn’t wish cancer on their enemy… 

Marissa Thomas: I wouldn’t say all that. *chuckles*  I mean, a lil’ sugar in somebody's gas tank or anything, I'm okay with that. But you know… *both chuckle*

Jodi-Ann Burey: I don't remember what we were talking about before I went on my tangent of  like, telling the world that I'm just not a good person sometimes. 

Marissa Thomas: Well, I think I know I said I wouldn't wish cancer on anybody. [Jodi-Ann: Yeah.] and I don't know if it's necessarily...I mean, yeah. Definitely chemo. Chemo is a beast all in itself.  

Jodi-Ann Burey: But like, when we say that like, “I wouldn't wish this on anyone else,”—does that feel martyrdom to you? ‘Cause you had it? Or is it just like, you had it, you don't want anyone else to have it? I don't know if you felt that feeling of, this is unfair. 

Marissa Thomas: Yeah, I definitely asked myself a couple of times. Or just asked, you know, God and the universe, Why me? Like why? Why am I being chosen for this? I think I'm realizing now, why. It's being a voice for other women, or other women being able to look up and be like, Okay, well, you know, she went through this and not to say like, I can't go through this, but, you know, seeing her process and what can I pick out of that process to help me through my own type of thing? So I think that that is one of the lessons and the reasons why I was chosen for this. I mean, you couldn't-if you asked me two or three years ago, well, three years ago, if you asked me if I was going to be doing this, I'd be like, no. No way possible. And now it's like, here I am. 

Jodi-Ann Burey: Yeah. So do you think—I think that's what we were talking about with the chapters—that For the Breast of Us is that next chapter somewhat?

Marissa Thomas: It's definitely that next chapter. Definitely been writing it. Would love to see it—which, I'm sure it's going to continue to grow. I know a lot of women are, you know, they've told us that they're thankful for the place, they're thankful for being able to go to a website and read stories or having other women that they could talk to. So it's definitely the second part of that chapter. It'll be interesting to see how that unfolds or what that leads to. But it definitely is. And I think just the patient advocacy part—I think, for me, I can definitely tie into my healthcare experience and have been working in healthcare for so long. And then also just what I've learned on the patient side of being a patient with breast cancer, tying those two things together. 

Jodi-Ann Burey: So you've been doing so much work, I think, to make safe spaces for women of color, which we need, right? Not only as a space to just manage health care, but like, manage our personhood, manage trauma, kind of manage who we are. And so where do you think that those safe spaces are for you? How have you created a safe space for yourself and the things that you need? 

Marissa Thomas: With family and friends, for sure, taking that time out for myself. Making sure, you know, being able to go on vacation or spend time with people. Not looking at my email. I was just telling somebody today, like, making it more apparent that Sundays are for myself, not doing any type of work, and just shutting down. Because I know, when we first started for For the Breast of Us, I was definitely doing that a lot. And that ran me down. So I wasn't able to work out like I wanted to, or take care of myself. So just recognizing those point in times and just being like, no, like, I'm important. I need to take some time out for myself. Even when it came to the holidays, this past year of just being like, during Christmas time, I’m not working. And just realizing that people have to realize I have a life too. I have a life outside of this. I need to be able to focus on that life. I can't have and develop relationships with people or have a significant other if I'm always constantly doing this 24/7.  

I think we come into this whole generation of, you just always have to be working in. Even though it's a pandemic, like you should be doing this. It’s just like no, like mentally, this is a lot—on top of everything else that you're going through. So I've definitely created those spaces for myself, of taking care of myself and surrounding myself with people who, we're all just going to uplift each other and be accountable to each other. 

Jodi-Ann Burey: Yeah, take time for you. And thank you for taking time for this conversation with me. Is there anything else you wanted to share? 

Marissa Thomas: Well, definitely plug For the Breast of Us. [Jodi-Ann: Absolutely.] Everybody should know. So you can definitely find myself and all the women of For the Breast of Us at forthebreastofus.com. We're also on all social media. So Instagram: @forthebreastofus; Facebook: For the Breast of Us; Twitter, @thebreastofus. If you want to reach myself, you can email me at marissa@breastofus.com

We do a monthly live podcast on Facebook called Baddies Talk Back. [Jodi-Ann: Love it.] On the third Thursday of the month, we talk about all different types of topics that aren't necessarily have to do with breast cancer. So it's like dating, sex after treatment. One of them was the burden of being strong. Kind of something that you and I had talked about. So there's always different things going on there. So definitely check us out. You know, support us one way you can support us just by liking or sharing something. It's really easy. [Jodi-Ann: Yeah.] For myself, I would just like to say thank you for having me on. [Jodi-Ann: Oh my God, thank you.] I would love to do this again, I think we have a good you know, back and forth here. So whenever you want to have me on let me know. I would love it. This is great. 

Jodi-Ann Burey: Oh, absolutely. And I will say like, as someone who--this is so weird. But sometimes I get a little jealous of the breast cancer community ‘cause I'm like, oh y'all are tight. I don't know anybody else who had a… well at least y’all know each other, right? I don't know anyone else with a spinal cord injury or had a spinal cord injury due to a tumor, whatever, whatever. But when I was navigating my own situation, just to see the amount of resources of any type of cancer was so helpful to me. Um, so what I would just encourage people is like, regardless of what cancer you have, there could still be a lot that you can draw from it. And I didn’t even find-I don't think For the Breast of Us even existed when I was going through this, because I was really struggling to find any type of cancer story from a person of color’s perspective, or, or even image, I couldn't find anything. So, I felt really isolated. 

And so I would just say, breast cancer or not, if you have it, if you know someone who has it, you know, be it breast cancer or any type of other cancer, I do think kind of tapping into these spaces, or even kind of normalizing your social media feeds with these types of conversations can make you navigate maybe your own situation a little bit better, or, or support someone who maybe is currently going through it, or might be going through it soon. Like, we are all touched by cancer in some way. And you never know when someone you know, might get a diagnosis, and then you start saying the wrong things. And maybe that relationship suffers. And so yeah, I think everyone should check out For the Breast of Us. I found a lot of-I'm not like in the community, but I liked seeing the pages. I like seeing folks who are kind of owning themselves and creating safe spaces for themselves and kind of owning that story. 

Marissa Thomas: Yeah, yeah. It's been beautiful to see. Just seeing other organizations or pages that are popping up, and it's just like, yes. This is one of the things that we definitely wanted. We definitely wanted to develop For the Breast of Us for that, but then to also see other cancer patients like yours, or other ones that are just popping up and it's like, Okay, so now we actually have a voice and a platform.

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Jodi-Ann Burey (as host): Black Cancer is created, edited and produced by me, Jodi-Ann Burey. Thank you so much, Marissa, for sharing your story with us. To make sure that other Black Cancer stories become center to how we talk about cancer, like and subscribe to all the internet things, leave a review on Apple podcasts, check out our website: blackcancer.co, and on Instagram: @_black_cancer. Trauma comes with endless wisdom for ourselves and those around us. Tell someone you know about Black Cancer.

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