Building The Noise with Megan-Claire Chase: EPISODE 022

SPEAKER_06 0:00

I had a a circular green bruise on the back of my left arm. So by this point, I have been to my primary, I had been to my endocrinologist, and all they're doing are like blood tests, blood tests. And they're like, I don't know what your body is trying to tell us. Like, so let's make another appointment in two weeks. If that bruise is still there, because it was so peculiar. And once you know it, I discovered the cancer myself.

SPEAKER_01 0:26

Wow.

SPEAKER_06 0:26

Because and it was huge. And it was near like my underarm. So I didn't think breast, but I could clearly see it like raised, and it was like the length of a fist, and it was as hard as a rock. Wow. And I immediately like knew that it was a mask. And that is because uh the claim to fame in my family is my uh maternal uh grandmother, my nana. She was the first biracial registered nurse at St. Vincent's in Bridgeport, Connecticut. They thought she was half white and half Hispanic, and she didn't tell them until years later that she was half white and half black. But she always, you know, taught us it's important to know what your body, what like what your normal feels like, uh, so you know when something is wrong.

SPEAKER_05 1:14

Welcome to the Building the Noise Podcast.

SPEAKER_00 1:18

Ladies and gentlemen, welcome to the Building the Noise Podcast. I'm Matt Teresco, and today we're joined by the none other than Megan Clare Chase, known to the community in patient advocacy as Warrior Magsie. Magsy is a cancer survivor, patient advocate, and patient experience, and health media consultant whose work sits at the intersection of storytelling, content strategy, health equity, and patient-centered program development. Through her advocacy, she pushes the healthcare community to move beyond simply inviting patients into the room and towards letting lived experiences shape the questions, priorities, education, and solutions from the very beginning. Her voice brings clarity, urgency, and accountability to conversations about cancer survivorship, patient experience, and what meaningful inclusion should actually look like. Megsy, welcome to the show.

SPEAKER_06 2:14

Oh, I'm so happy to be here, and what an introduction. I'm like, who is that?

SPEAKER_00 2:20

She's impressive, isn't she?

SPEAKER_06 2:23

Wow.

SPEAKER_00 2:24

You've done a lot. Um, and the first thing I'm gonna start with is what are you currently doing? Uh, we've heard everything you've been through, but what do you find yourself doing these days and why?

SPEAKER_06 2:36

Well, I would say professionally, I do work in the nonprofit cancer space um as the director of health impact and strategic partnerships at Share Cancer Support. Uh, but then I am also, I like to call myself an activist uh here in Atlanta, um, you know, standing up for all minoritized communities and just human rights uh as well. And I'm a cat mom uh to Phoebe Nell. Um and then my little angel uh Nathan Eger. He passed away at 20 years old uh two years ago. And uh so I had you know, cat mom to my heavenly son uh as well, and I'm a daughter. Um, and my parents are divorced, and my mother actually is an ovarian cancer survivor and has a blood cancer, so I also call myself um a modern caregiver as well.

SPEAKER_00 3:36

Yeah. That's it, and that's a tough job to tackle and take on. And I know you've done that if I'm not mistaken, from a younger age, too.

SPEAKER_06 3:44

Yeah, you know, it was it's different now. Like pre-my own cancer diagnosis, I really never understood the fatigue. Um, or you know, I get why she tried to hide certain things from me because at the end of the day I am still the baby. Um, you know. Uh, but after my own diagnosis, there was more trust because I have stared my mortality in the face. But we also had to learn how to communicate with each other because it was different when she was working, and then when she retired, uh, and then I'm back at work and I still have my own scans and things to do. It was really hard to kind of navigate that, but now I feel like we have a good working system.

SPEAKER_00 4:30

Yeah, and it obviously gives you amazing insights to carry into the work that you do, not just as we've heard you fighting for the patient voice and the importance of that, but the caregivers as well, right?

SPEAKER_06 4:42

Absolutely.

SPEAKER_00 4:43

So when you when you think about your own story, let's go back to your diagnosis. Um, and if I'm not mistaken, it was um invasive lobular breast cancer, correct? Yes. Yes. Only two months after you turned 39. Yes. So to help our audience understand what that was like for you, uh I'm I'm obviously hearing a family history of somewhat, right? Um, did you have screening going on that you were caught at 39? Um, or was this just your own intuition and your own screens that you found it?

SPEAKER_06 5:22

So let me take you back a hot minute. Um, you know, like I always knew I would get cancer, but it was supposed to be ovarian or cervical. Because the well, the joke in my family is um because my parents divorced when I was young, but the joke as like I got older is I looked just like him externally, but internally I got all of my mother's uh issues because she had ovarian cancer when she was pregnant with me, and it took them years to get pregnant, right? And so it really is a miracle that like we both survived and that I didn't have any development issues. I was and I'm literally a cancer because I was born three months early. Um, I was supposed to be born the last week of October, but I was born July 3rd.

SPEAKER_00 6:14

Wow, very early, right?

SPEAKER_06 6:17

Very early. So I I hear the story every year uh on my birthday because I I ended up being born on my maternal grandfather's birthday. So I would get two birthdays growing up because July 3rd, I mean, no one is around. Sure. So I would have birthdays in like early spring and then one with the family. Um, but all of that to say, you know, once I had turned 16, I had been monitored because again, I just had a lot of those same issues. We always suspected endometriosis, like all of these things, right?

SPEAKER_01 6:51

Sure.

SPEAKER_06 6:51

But then um my symptoms were not typical breast cancer symptoms, and that's why I feel like my story stands out a little bit more because everyone ignored me, and I never thought breast cancer either, but I started first of all gaining weight, and I am someone who was super fit. I mean, I grew up studying ballet, doing musical theater, as a cheerleader in college. Like, I mean, I was fit, and the fact that I started gaining weight really, you know, like when I think about it now, makes me upset because the doctors like should have been like, yeah, this is not consistent for you. Like normally it's this, or and and no one ever said anything. I was just told you just need to eat better, get more exercise. And then I just got really lethargic, and I am someone who has like a lot of just natural energy. Well, yeah, I did back in the day. Um, but all of that to say, they were just like, Yeah, just get more rest. And I'm just like, okay, but you're missing the point. And so this is just like constantly, literally over like a two and a half year period, or it feels like symptoms, whatever was going on in my body was really ramping up within that time period. And now I was not old enough to get a mammogram, a screening mammogram. But because my primary care provider knew of the family cancer history, because I know a lot of my family health history, and I feel really privileged in knowing that because I know some people just don't. Um, so they were like, Yeah, let's get you a mammogram at 45. And I went in, they're like, hey, you're clear, come back when you're 40. Never thought anything else about it. But the symptoms were I got these tiny green bruises all over my lower left leg. And I'm thinking, you know, you're trying to make it make sense. I'm like, wait, I'm right-handed, right dominant. What's going on? So I'm like, oh my god, it must be leukaemia. Uh so you know, I mean, I was always going to the doctor because I was taught if something feels off, you don't wait, you go. And they're like, Well, you're anemic, but not enough for this. I was like, well, clearly something's happening because they were just like all over my leg. And then I was um my hair. Now my hair was my pride and joy. Okay. Like I was very attached to my hair. Like, there are some people that are like, oh, I don't care about my hair. I did because growing up in the theater and all that, like, you do a lot with your hair. And my it was my stylist that really started to alert me that something may be off with like my hormones or something, because she's like, Your texture has changed. Like, I used to have really soft hair and it got brittle, and then it started falling out only on my left side, and we had to like chop it like boy short. And I'd always at least have like a chin-length bob, like my you know, like that was the shortest I would ever go. We had to like literally chop it, and I was like, I don't know what's going on.

SPEAKER_00 9:52

And then must have been traumatizing.

SPEAKER_06 9:54

It was so traumatizing because I just didn't understand, like, what is it that I'm missing? What am I doing? Like, I I really was putting a lot of blame on myself, you know. And then with the weight gain, my boobs got bigger. So I was always feeling them. I'm like, man, what is this? And um, I was told it was a zit on the outside of my left breast. And this is why I am advocating so hard for more dermatologists of color. Because, you know, you gotta go with your insurance, what's in network? Um, and she was like, Yeah, it's a zit. And I was like, that's a really odd place for a zit on the outside of my left breast. Like, women have had that before, you know what I mean? And so she gave me some cream and it went away, but I like filed that in the back of my mind of like, I just keep monitoring that because I just I don't know, that doesn't sit right with me. And then I know you're like, there's more. It's like, yes. And so then I had a circular green bruise on the back of my left arm. So by this point, I have been to my primary, I have been to my endocrinologist, and all they're doing are like blood tests, blood tests. And they're like, I don't know what your body is trying to tell us. Like, so let's make another appointment in two weeks. If that bruise is still there, because it was so peculiar. And when she know it, I discovered the cancer myself.

SPEAKER_01 11:19

Wow.

SPEAKER_06 11:20

Because and it was huge, and it was near like my underarm. So I didn't think breast, but yeah, I could clearly see it like raised, and it was like the length of a fist, and it was as hard as a rock. Wow. And I immediately like knew that it was a mass, and that is because uh the claim to fame in my family is my uh maternal uh grandmother, my nana. She was the first biracial registered nurse at St. Vincent's in Bridgeport, Connecticut. They thought she was half white and half Hispanic, and she didn't tell them until years later that she was half white and half black. But she always, you know, taught us it's important to know what your body, what like what your normal feels like. Uh, so you know when something is wrong. And I knew, I was like, oh my god, I don't know. I know it's a mask because it was so hard. Sure. But I I did not, I guess I couldn't connect thinking cancer. So when I actually got the diagnosis of stage 2A and basive lobular breast cancer, I was like, I have what? Yeah, I never heard that term before. And in that moment, I felt so betrayed by the whole breast cancer awareness because I was like, how come I don't know that they're different types?

SPEAKER_00 12:39

Sure.

SPEAKER_06 12:40

And and then I get one that only like you know, 10, 15 at get, and then that's even smaller for black women. And I I was just like, I kept hearing throughout my whole entire like you know, journey during active treatment, I would have side effects or weird ones or whatever, and they're like, Yeah, we don't know. And I'm like, why don't you know? Sure.

SPEAKER_00 13:04

But that's been extremely frustrating and just tiring to hear the consistent, we don't know, we don't know, we're gonna have to wait.

SPEAKER_06 13:14

Especially, you know, because you're always hearing, don't advocate for yourself, right? I'm like, I did all the things right, and I still ignored. And I remember you asked me earlier about like genetic testing, right? So, yes, like that was one of the first things that happened after I got the diagnosis, and again, I'm like, we need more people of color to get genetic testing. Yes. Um, because I had a really great genetic counselor, she was fantastic. And when we're going through the family health history, and she's you know doing the diagram of my family on both sides, and she goes, Oh my gosh, she goes, There is clearly something there on your mother's side, because out of the eight uh women in my immediate family, four of us have had cancer, two have had two different types, and so when it came back that I was Brock and negative, you know, and but then I had a variant of unknown significance, right? And I get mad when doctors say, Yeah, you know, we don't know if that was a cause or not, so just don't worry about it. And I was like, you know, how would you feel if you have something in you and you can't even like tell me if it should be a concern or not, and that you just don't know.

SPEAKER_00 14:33

You you exactly, right? It's an uncertain significance, but you're telling me take it as no significance.

SPEAKER_06 14:40

Right. And and that I that just really bothers me, you know, and that was something like throughout my journey because I you know, I'm also a writer, and so I kept a lot of notes. A lot of notes.

SPEAKER_00 14:54

Uh when I thought, yes.

SPEAKER_06 14:57

You know, when I have the energy because I I just kept thinking to myself, I I I'm doing the things right. So what is happening? And and when I started to see all of these barriers and these holes and all of these challenges to just be heard, and I thought to myself, I actually, you know, I've got some intelligence here, you know, I'm educated. And if I'm having difficulty trying to figure this stuff out, I can't even imagine if I didn't have that education or English wasn't my first language. Like I just like went down that rabbit hole.

SPEAKER_00 15:32

Sure. That's an unbelievable mindset though, to in the midst of everything you're going through, to think about how difficult this is for everyone else. You don't you don't find many people like you.

SPEAKER_06 15:47

I don't know about that. I I mean I really I feel like as a black woman, like I feel like we're always thinking about things like that because if we're having issues and if we're not being heard, then it's like we just have to keep like taking it, you know, layer by layer. And and it was very disappointing when I realized that all of healthcare, it doesn't matter what your income is, how educated you are, like we're we're all treated like a certain way. Yeah. And that and that's what was really hurtful to me. And I kept thinking, you know what, I gotta make sure other people like know about this and know here's some things to say, um, or here's who you can ask for, because I I learned how to do a lot of those things on my own.

SPEAKER_00 16:36

Sure. What's amazing to me is that, as you said, you grew up in a household that you know, you had your I think you said your your was it your grandmother or aunt that was the first um who taught you all the right things. You had been dealing with your mom's diagnosis and hearing all going to all those appointments and her treatment and what she had gone through to get her diagnosis, so you knew all the things to do and all the the buzzwords, right, that get thrown around. But yet you still faced the struggle that so many clinicians at times would overlook and say, No, you know, you have all you had all the information, but I'm sure that's not the way that you felt.

SPEAKER_06 17:25

Not at all. And then when I learned about the adolescent and young adult cancer community, I was like, you know, because it was two months after my 39th birthday, and I'm thinking, okay, like I'm a whole adult at this point, right? But that's when I learned about like another underrepresented category within Cancer Land. And and I was like, oh my gosh, if my you know primary hadn't had me get a screening at 35 and the fact that it was covered by insurance because of that clear family history. Sure, you know, and I was like, oh my gosh. So I really am young for this. And and that was also another challenging label to be given.

SPEAKER_00 18:08

Yeah, I I can I can only imagine. I mean, you you you talk about some of the potential solutions, right? In ensuring that you have clinicians that look like you, right, that you can trust in your community. What other solutions do you think we need to be focusing on to ensure that everyone has the same access to education, but also to these specialists that most times it takes to get to?

SPEAKER_06 18:34

You know, huh? It it's so many things. And I and I want to be very clear. Like, just be just because a a doctor specialist or something may look like me doesn't mean I'm I'm still going to get like the best care possible, right? Like, you know, so I want to make that very clear. So I think it's just important that there's a pathway for black people and people of color to get to that if they want to go to medical school. I mean, like it's so expensive, right? Like there needs to be like a pathway, like starting from like middle school when they recognize, hey, this person's really good at science or math. Like, I mean, I'm going all the way back, right? And then then I really feel that even if you don't look like me, you need to have like ongoing cultural competency. Sure. Right? Like it's not going to stop because everyone has different personalities, but one of my like dreams to do would be to first of all become a a renowned uh speaker and go to medical schools and then go to cancer centers and say, look, here are some things that you can say or do for a patient because we're looking at everything. Like from your facial expression, you may not even realize it, or you're not looking at me at all. Sure. Um, you know, like all of these like small, it may seem small to them or insignificant to them, but when it's literally your life, and even if you don't know what questions to ask in that moment, if you're feeling like uncomfortable, like ask, did you like that nurse who talked to you before? Well say, Hey, you know what? Before I leave, I want to talk to that that person, you know, like it's little, it's little big things like that, because it's about you feeling comfortable with your care team. And and you know, and some other things too is it's so important to take away the shame of meaning health. And I mean that financially and mentally and emotionally, um, because that is uh something I I've had to deal with. And uh I'm a big proponent of therapy, I've always been that way. Um, and so before pre-cancer, I had a therapist. Um, and she was like, Well, why aren't you asking for help? And I was like, I can't like let people know I I need like help financially, like that's embarrassing. And she goes, You have cancer, not the flu. And so like the way she said that to me so resonated. And I was like, Yeah, you're right. Like, I'm not just asking like money to go on a vacation, like legit, because that was my second thought after I got my diagnosis, aside from like, I have what? And then it was like, oh my god, this is gonna bankrupt me because I already knew it was gonna be super expensive, yeah. And and I feel like if we actually had true patient navigation and oncology social workers everywhere, yeah. Because I'm gonna tell you this I didn't even know that I had an oncology social worker. So the way I found out is I'm just a naturally organized and anal person, and so I and when you get a diagnosis, right, with you. Are just inundated with all these papers and booklets and brochures and blah blah blah. I didn't see myself um, you know, reflected in any of it, but I got this like yellow sheet of paper, and it's just all black text, and I read every single line. Uh, and when I was like an oncology social worker assigned to my oncologist, what's defax doing in the cancer center? Like, that's literally, I was like, I don't the fact that I was like, I don't understand that, and I I want to understand why it's attached to like my oncologist, I'm gonna call that number. Oh my god. Matt, if I had not called that number, I would have missed out on so much financial help and support and but you had to call yourself. Yeah, well no one told me.

SPEAKER_00 22:50

Is that not proactive though, either that they're reaching out to you?

SPEAKER_06 22:54

Exactly. Like, there are just so many systems that are just broken.

SPEAKER_05 23:00

Yeah.

SPEAKER_06 23:01

And again, you know, and I think to myself, that's why like part of my advocacy is sharing everything I know. Um, and I hope it reaches people because like I was so upset that no one was like, hey, this is what they do. And it was just like instinct to be like, you know what, just call. But how many people may not even think of that or even receive even that sheet of paper that I had?

SPEAKER_00 23:26

Yep. And and it we see it all the time, and and you know, the shame component as well is is a major uh element that needs to be addressed, as you reference. I mean, countless times I've worked with organizations that have provided funding for all different types of things, and what they often hear is patients get to that stage and then opt not to complete it because they get in that mindset of either the shame kicking in or there's someone worse off than me. I'll I'll just grit and bear it. And no, that that's what it's for.

SPEAKER_06 24:02

Right.

SPEAKER_00 24:03

Right. And but if that shame is what's driving the the mindset, it's never going to be able to be utilized by you who needs it.

SPEAKER_06 24:13

Exactly. And so that is why I think what my previous therapist said just hit home. Um, you know, because it's like this is major, like this is literally your life. And as a young adult, uh too, like many people under the age of 40 are working or they're in school, uh, undergrad, grad school, whatever, doing trade, what whatever they're doing, right? Like there's some sort of like work involved in that. Yeah. And I was not where I wanted to be in my career at that time either. So I learned real quick what bad insurance is. Uh, you know, and and understanding long-term and short-term disability that FMLA only protects your seat, you get no income. Like, I I could not believe all of that. And and that's what shocked me.

SPEAKER_00 25:03

And I was like, you know, we really haven't thought this fully through of what folks are up against. Yeah, especially someone that's young as you reference there. I mean, how many decades did it take for us to get the AYA or adolescent young adult community even on the radar?

unknown 25:21

Right.

SPEAKER_00 25:22

Right. And you know, unfortunately, we had a a guest on um a couple days ago from the Brem Foundation, which is focused solely in breast cancer, talking about, you know, sometimes the guidelines are the biggest barrier. You talk about, you know, your own story having your uh uh scan at at 35 and then come back in five years. Well the current federal guidelines are start at 40 and then every other year from then on. So is that really a benefit? Right? Or is that just are we saying every other year from a sheer cost perspective, not thinking about the influence and impact that that can have on someone's life?

SPEAKER_06 26:05

And also, too, better screening um tools, right? Because it was clear that the type of cancer I had lobular is known as the sneaky cancer, because if you have dense breasts, it is really hard to see on like using a screening mammogram imagery.

SPEAKER_05 26:23

Sure.

SPEAKER_06 26:23

Yeah. And um imaging, not imaging, imaging. Um, and so but it so it was missed. And when I learned that, yeah, you know, when your body, when you start to feel, you know, these strange symptoms, that was the cancer because it's really slow growing. So by the time you find it, it's big, you know, and so bigger than your fist, right? Like, and so I got really mad and again just feeling really betrayed by the whole breast cancer awareness because I was like, why don't we know that? Um, and why why isn't there better imaging in this age? Like, what why?

SPEAKER_00 26:58

Yeah, yeah. And and not even that, um, in speaking with the Brem Foundation, as you you talk about death breast tension, uh breast tissue, most women don't know what that even means, right? Um, because that's not something that we learn in school growing up, what's considered dense and what's not. Um, and not to mention, if that is you and and the screens don't work for you, there's no education about what else you should be doing or could do.

SPEAKER_06 27:27

I love that you said that, Matt, because it's like what's that next step? Okay, you know, and I feel like that is often what is missing. Um, is what do you do? Like, my even regarding fertility, and I I do want to definitely bring that up because again, you know, I I may have been in my late parties. Um, but I I remember being told, you're gonna need 16 rounds of chemo. Do you want to freeze your ex? That's exactly how she said it, my oncologist. Like just like that. And so, of course, all I heard was the chemo and 16 rounds of chemo. And I was like, how am I gonna survive that? How am I gonna work throughout all that?

SPEAKER_00 28:07

You're focused on the now, right?

SPEAKER_06 28:09

And because we knew because um it was growing so big, we were trying to make sure because it had not gone into my lymph nodes yet, thank goodness. So we were like, we need to first contain it and then shrink it as much as possible. So I had chemo before having my um surgeries, and you know, I I'm to this day, I will always wonder, was there a window? Um, and also, well, I wouldn't have been able to afford it anyway. But I what I wish had happened, and this is also part of my advocacy, is that's a lot of information. Talking to your oncologist for the first time, all of this, why didn't someone call me the next day and say, hey, I know you were like a deer in the headlights. That was a lot of information. I want to make sure that you're understanding what comes next, or here are some other options in between your start time of chemo, etc. Like that is what I wished. And I cannot tell you how many times I've gotten DMs from black women who have said, I am so glad I saw a video of yours, or I heard a podcast interview of yours because I went in and they never mentioned about fertility preservation, and I had to bring it up.

SPEAKER_00 29:23

And I was like fertility or genetic screening as we not even screening, but um biopsying and having genetics run on the tumor type itself.

SPEAKER_06 29:32

Right.

SPEAKER_00 29:33

With all of these new tumor or all these new new treatments that are very uh specific to the type of genetic mutation that's causing the tumor. Right. I think the latest numbers were 60% of women are not having genetics done on their tumor. And most of them uh the answer that you hear from many of the systems that are not doing it is well, no one asked. Oh, so now we're supposed to know to ask when we get hit with this diagnosis.

SPEAKER_06 30:00

I mean, it it's like you don't know what you don't know. Yeah, and there's so much to know. And I I think because it's a systemic issue and everyone's moving so fast, and there's no time to really like slow down. And for some, you know, when you do get that diagnosis of um cancer, you may have to start like in that same week chemo treatment. So sometimes there's not even a window, but darn it, there could really be just a follow-up or something. And and we don't expect the cancer centers to have all the answers, but darn it, you should be like, you know what, this is gonna be a lot. You may not be ready to hear this right now. So I'm gonna say this to your caregiver or your partner, whatever, and say, eventually you're gonna need some help with late mental health. Like, this is gonna be a lot to process. So when that happens, like, you know, we have some stuff here at the cancer center. I don't know if that's a network, but here's some next steps that you can take. Like, no one did that. Everything I did for myself 10 years ago, so I'm definitely aging myself, um, is because I took the initiative.

SPEAKER_00 31:08

Sure. Yeah. And and and this is, you know, the big ask that I have for for hospitals, for example, and cancer centers is you never hear them talking about the disease state advocacy groups that are out there, where you should look into this organization. I mean, how did you even come to the understanding that there were groups like CHARE out there?

SPEAKER_06 31:29

Um, well, you know, for for me at that time being a young adult, and the fact that I kept hearing, oh my god, you're so young, you're so young. Like I kept hearing that. It felt like every time I went to the cancer center. So I just did a search, young adult cancer, and that's how I came across stupa cancer, and um, it used to be called lacuna loft, and now it's cancer practice society, but that's how I came across those two. And my oncology social worker, right? She said, Hey, uh I feel lucky that I do live in a big city in Atlanta. So at least we do have options at the cancer centers, right? Like I'm very aware those in the rural community may not have choices.

SPEAKER_04 32:10

Yeah.

SPEAKER_06 32:11

Um, but I remember I had just gotten my um port and she goes, Hey, there's a chemo flage class coming up. And I was like, What is a chemo flage class? And I was like, that is brilliant, but what is it? Right. I don't even know, I don't even know if they still have it, but um her name was Cookie Argonaut. Isn't that a fabulous thing? That's fantastic, right? And she was uh um an older uh distinctive uh woman, and she created this like little mini class, it's only limited to eight patients, and then your caregiver, whoever that is, and you can have all different types of cancers. And she talks about hey, you're gonna go through chemo, there are gonna be some things that may or may not happen. I just want you to be aware of some things that might happen so you're not totally in the dark, right? And that's where I met my chemo twin, Erin. Uh and to this day, like, and she was the first person I'd ever met my age, we're gonna be the same age. She had a base of ductile, I had a base of vlogular. You know, it was like I was like the the uh caramel, so to speak, and she was the vanilla because we were even like the same height. We had I was like, what is happening? And so our mothers were talking and stuff, but like that's when I learned you have to drink a ton of water, and I don't just mean like yeah, like a ton of water to flush out the poison and just so many other things. Like, I knew I would lose my hair on my head, I never thought about my nose hairs, like it was that kind of information from other patients, and so when I would have other side effects, and I would say to my oncologist, I was like, Well, why didn't you tell me this was a possibility? Oh, I didn't want to scare you, and I was like, you know what? With your patients, if you're seeing something over and over again, just say, like give them something and say, look, we're not saying this will happen because everybody is different, but here's some potential so you don't totally freak out.

SPEAKER_00 34:13

Yeah, exactly. And or at least here's some resources that you can when you get the time, right? Because everyone's time for when they're ready to learn is gonna be different, right? Uh, but even we know that most hospitals don't have many resources, or now they think, oh, they're digital, so everyone can access them. No, that is not the case.

SPEAKER_04 34:32

It's not. It's not.

SPEAKER_00 34:34

We all realize that with uh with COVID and and you know, trying to do schooling from a distance and how many challenges they were there were for rural communities back then. Um, to think that if we just put something on our hospital website, people will find it. Oh, because the hospital website's usually the most well-indexed site there is, and it's a super easy search.

SPEAKER_06 34:55

Exactly, exactly. You know, and then it's also the language that it's written in, like patient-friendly language. And you know, I kind of crack myself up sometimes when I think of where I am now as far as like talking about cancer and uh the experiences and uh research, and I'm like, it just rolls off my tongue now. But there is a time, and I always remind people of that. I was like, I did not come in knowing all of this. I was like, I wanted to know everything that was going on with my body, and I know not everyone wants that, but I was like, you know what? If this is happening to me, I want to make sure others know about this, and so that's why I was just soaking up information and I was already doing that with my mother and now her blood cancer, you know, before my own uh cancer diagnosis, you know. So I was already like in the cancer world in that kind of way, but it just it makes me really proud sometimes because I would always say, I'm not a science person. Like, what are you talking about? I am piety, like voiceover, like I am a creative person, I'm not a researcher or scientist, and never had any interest in that. But I feel my lens is very different. So I always tell patients too, like, don't get intimidated by the science. Like you're it's your lived experience, and so but it's also your professional background too, because when I look at things, I'm also looking through like that marketing lens. I'm looking at okay, the actors that they use in that commercial. I'm thinking that like I go, like I just, you know, that's how I see things. And even showing me data, I can clearly tell that the advocate that they asked to kind of review it was not of color because I'll see certain things missing or a term that's like we do not say that in our community, you know, as you're trying to reference us. And so I was like, you know what? The trajectory of my dreams and career definitely veered a hard turn that I was not prepared for. Um and it and it has been hard. I mean, it's been a lot of challenges. Um, but I think to myself, darn, I am proud. Like I am proud of myself for being in spaces and how hard it is to speak up when you're the only one that looks like you in the room and you feel a weight to speak for others. Um but I still speak out.

SPEAKER_00 37:30

And that's what the world needs is more people like you that are willing to speak up and to not only do that for others, but to share your own perspective. Because this is this is where people learn, right? As you said, you're still in you're still having people that find uh shows that you've been on and episodes that you've done, and and even your own creative work that is making the changes to the lives of of people you've never met.

SPEAKER_06 37:55

Yeah, and you know, even thinking culturally too. I remember um I was speaking to um a sorority um there in California. Um, and you know, so this is like a beautiful, like multicultural mix of young women at that time. And I'm talking, and I was like, you know, it's your patient right to change doctors. And they're like, wait, you can do that? And and I was like, yeah. I was like, if you aren't feeling comfortable, it is your patient right to say, you know what, go up front and ask, who are the other doctors? Get those names, find out if you have insurance, are they covered? I was like, here are things that you can do. And I said, don't feel mad or get worried that you're gonna be treated, lest you decide to change doctors. I said, because at the end of the day, it's about you.

SPEAKER_05 38:46

Yes.

SPEAKER_06 38:47

And I'll never I'll never forget like the looks on their faces. They were like, wait, we can. I was like, yeah. I was like, you know, you can ask questions or say, well, why are you recommending this treatment?

SPEAKER_00 38:58

That's right. You have the right to to understand your treatment, you have the right to understand your diagnosis. And you know, as you said very early on, you know, the system right now is built on speed. And that doesn't serve anybody. But it it is what it is. It's the reason that we see so many clinicians burning out, is that they feel terrible that they don't have the time to sit with patients. Um, but the insurance model, the way it's been built, forces that speed, and most 85% of doctors now are owned by a hospital, and so their schedule is not even set by them, right? It's just move keep it moving. So I tell the same very same thing to patients all the time. If you don't feel you're getting the value for your money, go somewhere else. Now I know it's that not everyone can do it, especially as you referenced um in rural communities, but you don't have to go to your local hospital. And that was even something new for me when I had my spine surgery of wait, the best guy's in Manhattan, can I do that? Right? And taking it did take some work to figure out how to get it covered and transportation, all those sorts of things. But at least having that newfound knowledge of no, find what's best for you and then let's figure out how to get it done.

SPEAKER_06 40:18

Right. And and to not be afraid to ask questions, you know, because there's a a saying um that we say a lot in the black community, the closed mouth doesn't get fed. And I remember the first time I heard that, I was like, oh my gosh, I was like, Yeah, what's the worst they can say is no. Like, you know, it may feel uncomfortable to ask the question, but like you matter. And within uh cancer land, and then for a lot of us, you know, we ha now have other health issues stemming from that collateral damage. Like it is it is your right, like to ask these kind of questions.

SPEAKER_00 40:58

Yeah, I that's one of the things I wanted to follow up you with with you about is that so many um patients I've spoken to like yourself talk about the active treatment, right? Um, and then tell us that they never had anyone talk to them about then what? What's life like after that? How do I prepare for that? And and yes, you you you touched on the fertility preservation component, but there's a lot more that comes with the poison that you discussed you know early on.

SPEAKER_06 41:29

Yeah. Um so I also had uh radiation, and um I'm purposely bringing that up because again, uh we need our medical community to uh and other uh patients too to stop saying that radiation is so much easier than chemo because again, everyone's body reacts differently, but something I was not prepared for that I still live with is my flesh actually burned off. Like I now know what a burn victim feels like, and it is so excruciatingly painful. And I had just been told, hey, you might get a little pink, you might get, you know, it's gonna be warm. It is a weird feeling, it feels like a volcano. Um burning your skin, but it started like literally, and you can kind of see it for me. I don't know, but like it burned all of my skin on my side of my neck and through my back. I had like a huge burn that I didn't even feel. It took years for it to go away, and um, and then I saw like the scarring from those burns, and so it's like when you're in that survivorship mode and you're looking at your body now, you're like, oh my god, like I didn't expect to have so many scars that would be visible.

SPEAKER_01 42:45

Sure.

SPEAKER_06 42:46

Like that I that was very surprising to me, and and it makes me angry because even my hair totally changed. I have curly hair, uh, like a chia pet. And yes, do I rock it now? I mean, like today I'm looking a little rough, but do I rock it? Yes, now, but I think what so many people don't realize, I mean, in that survivorship stage when things are starting to grow back, but it never comes back the same.

SPEAKER_00 43:16

And you may have thought it would.

SPEAKER_06 43:18

Right, like I with my hair curly, I look very different from when I blow dry it straight, which takes forever. So I'm like, this gotta do curly. And I realized, man, some people only know me with this hair. And and then also, too, before um, we were talking before this, uh, we started recording, and I dropped some tea. And so I had a very severe reaction to one of my chemos and that first treatment of the first out of 12 I was supposed to get. And I remember the doctors at the time, they were like, We've never had a patient have this kind of instant reaction. And it took me years to verbalize it, but it was like a current running from my head to toe, and I I felt my nerves dying. Like I literally felt them dying. And uh I have a permanent handicap. So I think I've had that. Um and I get yelled at sometimes, you know.

SPEAKER_00 44:11

And are you kidding me?

SPEAKER_06 44:13

No, I am not, especially when I have my fascinators. And for those that don't know, fascinators like the British, you know, little hat, flower in your hair, like that's my trademark. And so if I get out of the car looking like that, people are like, why are you there? Like you're not old enough uh for that. And I'm thinking to myself, you have no idea.

SPEAKER_00 44:31

You have no idea what's going on under the skin.

SPEAKER_06 44:33

Right? And so that's also been really disheartening. But yeah, it's like those invisible things that no one sees, but like I used to feed and walk very gracefully, and I would hold things. Now I feel like a klutz, and just how expensive it is to survive. Like, I don't even identify with that term survivor because I'm like, I'm still going through it. Like, sure, I didn't, there wasn't an end point, and that's that makes me really upset too because no one prepared me for the fact that maybe my energy never comes back, the fact that I would walk differently, the fact that I would be in pain 24-7.

SPEAKER_01 45:12

Yeah.

SPEAKER_06 45:13

I was not prepared for that. And I was also not prepared for my post-treatment medications to not work in my body. Like that blew me away. And and ultimately I had to have a full hysterectomy and an ooparectomy, which is the removal of my ovaries, because um my doctor and I divorced my active treatment oncologist because that was like the most important relationship I've ever had, you know? And I was like, hey, you got me to this point, thank you, but you're not listening to me now because I was having these very uncomfortable and painful side effects to the post-treatment meds. Yeah. And she was like, Yeah, just get off it for two weeks and then get back on it. And I'm like, no, this is the quality of life, right? Like, and so when I divorced her and I went to another cancer center, uh, he was great. And he was like, Oh my god, your body. He goes, We gotta think outside the box for you. And I just remember crying and knowing that he came in prepared, he had read the file, I'd I because I had had my defenses up, you know. Right. And just how I didn't realize how much I'd been holding in. Um, and so, but then sadly, with the other um treatments that we tried for pre-menopausal women, because again, I was like 40 at that time, with just turning 40, and he looked at me and I was so touched by this. He goes, Look, I reached out to your gynecologist because I was having issues before. Again, I would get cysts the size of lemons, I would get hemorrhagic cysts on my ovaries. Like, I mean, so it's like, and so the thought that he talked with her first and said, Look, we're out of options here, like the only other medications for you to try to even see if your body can tolerate them, you have to be in menopause. And I just remember losing my mind and saying, like, with all the money funneled into breast cancer, yeah, how do we not have more options? Like, I was so angry, but then I was like, Well, do what you gotta do, because I can't go through this again.

SPEAKER_05 47:21

Sure.

SPEAKER_06 47:22

But I I didn't think of the that emotional impact.

SPEAKER_05 47:28

Yeah.

SPEAKER_06 47:30

Yeah. Cause it's very permanent when you have all of the body parts that make you biologically a woman taken out.

SPEAKER_00 47:38

Especially at a time period where our medical system was radically saying no, you can have estrogen.

SPEAKER_05 47:47

Right.

SPEAKER_00 47:48

Right? Yeah. And and who would who knows how things may be if that was not misunderstood. Right. Um, and you could have gotten uh estrogen replacement therapy afterwards. We don't know. Um, but at that point it was completely off the table.

SPEAKER_06 48:05

It was off the table because sadly, even once we had the the surgeries, my body still cannot tolerate those medications for my specific type of cancer for post-treatment. And I'll never forget waking up after that surgery because I was barely a year post-treatment. Um, and so I was still healing from all the cancer insanity, right? Like it takes a long time, and I think a lot of people don't realize like it takes a long time, like years to like heal from from all of that, right?

SPEAKER_04 48:42

Yeah.

SPEAKER_06 48:43

Um, but when I I literally like I physically felt empty, it was like my insides had to adjust to all of this room, and it was in that moment where clicked of like, what did I just do? Even though I'm single and I don't, you know, didn't have human children then, it was just like, man, the choice, I feel like it was an unfair choice. It was unfair.

SPEAKER_00 49:07

Yeah, you had no choice in it.

SPEAKER_06 49:10

Yeah, because and then it was like a double whammy because once they went in there, I did have endometriosis, like we always suspected. Um, but my uterus, which we always thought for years was a biconorant uterus, which is like heart-shaped.

SPEAKER_00 49:23

Um my mother had one.

SPEAKER_06 49:26

Oh, really?

SPEAKER_00 49:27

And she had twins in separate sections of the uterus.

SPEAKER_06 49:31

That is insane. Wow.

SPEAKER_00 49:32

She also had four ovaries.

SPEAKER_06 49:34

Oh.

SPEAKER_00 49:34

And which uh why my twin brother and I look nothing like each other, is that is believed we're not actually twins. We were just conceived within the same week.

SPEAKER_06 49:43

Oh my gosh. I literally just heard something about that.

SPEAKER_00 49:47

Yes. Wow.

SPEAKER_06 49:49

Yeah, to interview you, actually. Super rare.

SPEAKER_00 49:52

Very, very rare. All I know is my father used to say he could have sold popcorn at my our delivery because of all the all the you know attendings or the um residents wanting to watch to see what was happening.

SPEAKER_06 50:04

Oh my goodness.

SPEAKER_00 50:05

Yeah.

SPEAKER_06 50:06

Um, but when they went in there, like my uterus was actually like almost in hand. Like the bee had gone so deep, and so that was like a double whammy. Like when you're reading the surgical notes, and I just want to remind the medical community, like, reread your notes. Like, so please don't be racist and then check your bias. And also, like, I it was very painful to read some of those notes and just even how uh I have been described. And I'm just like, that's not me at all. I was ne I was not confrontational, I was asking a very direct question. I I shouldn't have to, you know, sometimes I recognize, you know, like you gotta put on you gotta put on a performance, right? Yes, you know, so I'll come in, like, why am I having to dress up to go to the doctor? And now I know I have to do that, otherwise I'm going to it's gonna be in my chart. Yeah, she's a difficult patient. And that is horrific when you see those words.

SPEAKER_00 51:07

Absolutely horrific. It's nothing that anyone should ever have to face, as you've referenced. It's also something that I try to tell patients not to fear, is how you're described. Because if you're not kicked out of an office, you're not advocating for yourself either.

SPEAKER_06 51:25

I mean, and and I have feared in the past, you know, will that doctor treat me differently because I question them? Um, and and it's awful to even have that thought, but you know, I truly feel, you know, a lot of times just the gender of women being ignored or you know, saying, you know, they're histrionic or whatever, like it, and then when you're also and I specify like there's there's black and there's people of color, just because historically what has been done to black bodies, because I once had someone ask me, why are you like separating it like that? And that's why. And it is a real fear because I I was I had to get a blood transfusion too, and I don't know why I was so like excited initially uh about it. I just thought it was like the coolest thing. Um because I was like, I don't just have like the regular O. I was like, I I am B positive, and I was like, oh my god. So I started like doing like cheerleading, like I'd be positive, and they're like, We've never seen anyone get so excited on learning their blood type. Yeah, to this day it makes me go with my method, okay? Right? I was like, this is so neat until I saw it, and I was like, okay, this isn't like Gray's Anatomy. Like, wait, wait a minute, this is like real, like, this is real, and the bag is way bigger than I thought it would be. But in that moment, Matt, I will tell you a thought that came across my mind is what if that was like a racist? Or I was like, is that gonna like I actually had a fear of like, sure, how is that person's blood? Yeah, but then at the end of the day, I'm like, please y'all donate blood because it really did save my life. Um, it saved me and helped me um not get uh severe infections because I had to get two black uh two bags of blood um before my surgeries because I was so weak. Uh and you know, so please donate blood. But it was like a fleeting thought, and I hate that any patient has to fear or have such additional stress when it's already your life is on the line.

SPEAKER_00 53:31

Exactly. Exactly. It it's it the you should be allowed to ask questions, especially in those moments when it's you've taken your life into your own hands, you're putting it into someone else's. Why can I not ask you a question? Or why are you going to judge me and talk poorly about me in a note that I'm going to probably see just because I have the confidence and the strength to do so. Right. Well, you know, now you find yourself working at at Share. And I also want to dive into the the um the work that you're doing as a quote unquote activist too in Atlanta, because I'm sure that there's a lot that um our listeners don't understand that needs to be addressed in the Atlanta community, but in in different populations around this country. Um, what are some of the things that people might misunderstand about the work that you do with Share and the val and the ultimate value of it?

SPEAKER_06 54:33

So the work I do at Share Cancer Support, um, we just went through a restructuring, so my role has changed a little bit, but I remember that you know, for a lot of organizations, and I and I really can say this with my full chest, a lot of them are predominantly have white people within the community. And so when I come along, and to me, diversity is not doesn't just mean race, you know, um, it's diversity and cancer types, it's uh diversity and um region, it's like you know, like all the things. And so when I start bringing in speakers of color, et cetera, I would actually get emails. Why are you trying to divide us, you know, why is there so many things just for black people? And and when you deal with things like that inside Cancer Land, yes, it just hurts even more. Like when I was in corporate, I sadly expected that. I it was very hard to compartmentalize it, but you know, I could somewhat do it.

SPEAKER_00 55:38

But what was considered your safe space?

SPEAKER_06 55:41

Right. Like, I'm like, at the end of the day, cancer doesn't discriminate. And I think and I think it's you know, recognizing like, hey, everything has already been for you. So now you're seeing all this new and these new faces that look different. So that that has been something that has been uh painful for me. And and um, but I'm really proud of what I have achieved there as far as like growing um that community.

SPEAKER_05 56:09

Yeah.

SPEAKER_06 56:10

Um, and so, you know, and then through that, um, because working at Share wasn't my first job like within the cancer space. I had my first one um during COVID. And it was through there as a partnership director that I met a lot of the people that I'm actually like, you know, collaborating with and partnering with now. So I thought that was just like really cool of like sometimes it's like it's so vast, but then it's so small at the same time.

SPEAKER_05 56:40

Yes.

SPEAKER_06 56:41

Um, and so I I think that's what's been to me like very exciting. And uh to have people trust you and like those from the LGBTQIA plus community, like to have that kind of trust really means a lot when someone opens up and tells me your stories, or I go into the communities that I am worried about, and I know, hey, you know what, there may be some shared similarities, and there are, right? And figuring out, okay, where are those shared similarities, but where are the challenges specifically for you so we can work on addressing those. And I and I wish more people would do that, you know, like it's gonna be uncomfortable, right? Like it's gonna be uncomfortable. I may I'm like, you know what? I don't I don't really know what I'm doing here, but I'm like, you know what, you matter to me, like your community matters to me. I mean, I grew up in a theater, like a pot, you know, and so I'm like, no, if you have a chest or you have these body parts, like you do need to get screened, but we need our medical community to not be afraid of you.

SPEAKER_00 57:48

Yes. Yes. I mean, I I was on a conversation this morning that really shook me when I heard what the insurance companies were doing in the late nineties, um, with regards to taking whole uh whole swathes of the job market and saying you're not insurable. Primar primarily the um uh I believe the words that were were utilized were um the uh hairdressers in the nineties. And you know, the way that the insurance works is they know that five percent of their patients spend fifty percent. So if they can somehow get rid of or not pay for those five percent, that's the game. And in the nineties, that's exactly what they were worried about was we know that that population's gonna be expensive. How do we legally and the only loophole that they had was you had to exclude the whole uh submarket of of employees? That's what they decided to do. If you were considered a hairdresser or barber, you were an uninsured uh individual.

SPEAKER_06 59:05

That is just crazy to me because like it's a human right. Like to get healthcare. Healthcare is a human right.

SPEAKER_00 59:14

It it's it's it it caused the individual I was speaking with this morning to leave the industry, which you know you you'd hope more would do that. Um but his comment was that there's so much money in that industry, so many people don't they sell their soul.

SPEAKER_06 59:31

Yeah. And it's hard, you know, because I think something else um that is often not talked about in survivorship is eventually you are gonna meet someone who has stage four, whatever type of cancer that is, stage four. And I to this day I remember the first person I ever met who died of metastatic breast cancer, and she was only 32. And I'll never forget that I was like, I'm going to hospice to visit a 32-year-old who is dying, and she has a little boy. Like, I could not believe it. It it just, you know, and I didn't even really know her. And but I would come in with my tiara and just I did not want her to see that I was like freaking out or anything. And she and I I do remember this one time where it was just both of us alone for a minute, and she goes, you know what? Thank you for just being you. She said, I just really needed that. She goes, Your laugh makes me laugh. And and I thought in that moment I was like, you know what, that that is something I can do. A a gift there and not treating her because she knows she's dying.

SPEAKER_05 1:00:44

Yeah.

SPEAKER_06 1:00:45

But I I'll never forget, like you I feel like you never forget the first one because even though in Cancer Land, the friendships that we make, I mean, they're deep like immediately. I don't know your middle name, I don't know your favorite food, but darn it, I I know all these other things about your cancer diagnosis.

SPEAKER_00 1:01:03

Yeah. And I know the hell that you've been through. Yeah. And we can commiserate on that, and you can come to me and cry on my shoulder anytime you need to. That's that's what I loved about w always working with with different communities, but really in the in the oncology community and cancer community, the brotherhood and bond that is is immediately formed um by individuals, and you do become a family. Um, but I think at the same time, we'd be remiss by not referencing the fact that it's okay for advocates to take time for themselves too.

SPEAKER_06 1:01:39

Exactly. And so, you know, a lot of my like activism, like it's things that I did pre-cancer, because I always say cancer can't take away the essence of you, or if you have a chronic illness now, like I now have like chronic issues, like the essence of me is still there, and that was such a relief to know. But like I I love don't say I love working, but like I I do a lot of volunteering with the unhoused and like food pantries and things like that all around um because I grew up knowing that hey, you need to always give back, and that's important. And so, but it took me years before I could go back and be around um that community because of my immune system, you know. So it's like, okay, I need to modify certain things so I can still do the things that are the essence of me, but I may have to like modify it a little bit. I'm a mentor um to um teenagers. Um, and I was a mentor for like five, yeah, five years, and um just from eighth grade to senior in high school, and doing that while going through cancer, and then she got to see me like you know, quote unquote spring again uh with the hair, but like how important that is. And I always want to remind people too, some people can be like a a dollar away from a major, you know, um medical issue. Uh and that can take all that can take everything. And so I'm very aware of how blessed uh I am that so many people really showed up, but it's really sad that in survivorship, those grants, the the feeling the of wanting to do good for someone who had cancer. Um, well, even though we have quote unquote survived, well, now we've got other health issues that also cost a fortune. I've had additional surgeries that's not cut, you know, that's not um fully covered. True. Um, and new medications and other scans on top of my cancer scans. Like it's so much, and and I remember, and I still feel this way, like I get mad that there's not enough support, but at least the term survivorship is finally starting to be talked about more and have a focus. I have noticed that in a lot of the research, and I think it's largely due to social media and so many people talking about like this isn't what I expected survivorship to feel like.

SPEAKER_00 1:04:21

Yeah. I I mean, it we don't talk about cancer, so to speak, as a chronic disease unless it's stage four, but it is.

SPEAKER_04 1:04:29

Yeah.

SPEAKER_00 1:04:30

Right? And it's it's something that you're going to have to live with the ramifications of for the rest of your life. Um, both the the positives that may come out of it and the negatives that are going to happen because we are treating it with poison, as you referenced. Right? We're hoping that we kill more of the bad ones than we do the good cells. Um but it comes with its damages. And I know a mutual friend of ours, MZ, you know, talks about cancer brain all the time. And, you know, just those days that the thoughts don't come as well, and he's had to learn to give himself grace, and I'm recognizing for myself the well, eighteen years of opiates might take just as long for my body to get used to not having them. Yeah. Right? It's it it just on this conversation it was that realization of, oh, maybe that's why some of these things are happening.

SPEAKER_06 1:05:23

Yeah.

SPEAKER_00 1:05:24

Yeah.

SPEAKER_06 1:05:24

And I feel like too, like, when we say brain fog or or chemo brain or whatever, I'm like, that just sounds too too benign. Like, like it is devastating. I'll never forget the first time I realized the memory, the short term memory, um, is I was at Target. Um, and I I'm a person that always has a different purse for like every occasion. And I remember going home and like my muscle memory of reaching for my purse, and I went to grab it, and it was There and I was like, and I literally was like, I don't understand what just happened. And I was like, wait, where was I? And then it was the if I hadn't had shopping bags, I wouldn't have thought to go back to Target. And that's when it scared me. And thank God it happened. And it was outside too in a car, and no one had touched it. But it was and it just got even more debilitating from there because I think people forget too the more surgeries you end up having and going, you know, underneath anesthesia multiple times within a year, that affects your your memory.

SPEAKER_00 1:06:35

Yes, completely. I would not cannot agree more, having uh, you know, been through 11 myself. It's uh but again, those things aren't told to you. No. You know, and I'm I'm sure you've had plenty of uh radiological imaging as on top of radiation. I'm sure that fear is always still in the back of your brain, though, too.

SPEAKER_06 1:06:59

Yeah, and you know, I'll never forget at the um at the start of COVID where millions of people got laid off. Well, in the cancer space, you're always thinking of when are my next scans. And so you're planning those scans, whether it's like a month, three months, six months in advance. And so when I realized, oh my god, I'm gonna be losing my health insurance, so I'm calling my cancer center. I'm like, hey, I gotta move up my scans to like this because I won't have insurance the next day. And what I didn't know, I found out later on the other side, they were furloughing staff and they weren't telling patients that so they were trying to push appointments out. And I was like, look, I I I can't go into a pandemic knowing if I'm having a relationship with Ned, no evidence of disease, like Ned's been my long-term boyfriend. And I love that, right? And so they were like, well, we can only do, you know, um the the diagnostic uh mammogram. And I was like, but I really I don't trust that. I only trust the MRI. And they're like, we're sorry. And I was like, you know what? At least we'll know how. So I go in and it just pays to be a talker and just be yourself that I was telling the woman this, and you know, I may be getting it mixed up. It was one or the other, whatever it was. Um, but they were like, you know what, hold on. The techs stayed late because they're like, I know you must be going out of your mind. Want you to go into this pandemic, knowing, you know, if you're still with Ned or if there is an issue. Um, and they stayed late. And so I was able to get my results and go into that pandemic. But it was in that moment again of the importance of and the frustration of having health insurance tied to your employer and the fear of what do I do without insurance? How am I gonna get my medications? Like it it's so much stress, but yet our doctors are like, hey, you need to ease your stress, you need to rest, you know, and I'm like, Well, I can't do that.

SPEAKER_00 1:09:01

We're are we all in the same healthcare economy? Right. I don't know how we do that. Yeah, it's it's it's dead on. And Megzi, this has been an unbelievable conversation. My last question for you is the same question I have for everyone. Just changes based off of diagnosis age. But if you could go back to you at 30 was it 38 and you had your first mammogram, what would you tell Megzi at that point?

SPEAKER_06 1:09:28

Um, that first mammogram is 35. 35, I you know, I I would say you did all the things right. Like you listened to your body, um you kept paying attention and you kept saying something. And so, you know, when I did get ultimately that that diagnosis, like if anything, it was a validation that I always knew something was wrong, and it turns out something was wrong. So I believed in me and I believed in myself enough. So that's what I would say to to Mexi is good job.

SPEAKER_00 1:10:11

Hell yeah. And I'm sure it's probably taking you years to get there. Oh yeah. Right? Let's not sell yourself short on that one. Um, to give her credit and give yourself credit for staying after it and keeping in the fight and not allowing the perception of others to hold you back, but to believe in yourself and and to fight for what you knew you deserved.

SPEAKER_06 1:10:39

So thank you, Matt.

SPEAKER_00 1:10:41

Thank you so much for your time. This has been an absolute privilege, and I look forward to sharing your story with our audience.

SPEAKER_04 1:10:48

Ah, thank you so much.

SPEAKER_00 1:10:50

Thank you.