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Breast Cancer doesn't care where you live, who you know, how healthy you are, how many initials you have behind your name, or the color of your skin. It could care less about money. This is a party that you never RSVP’d to, yet you are the guest of honor… and you don’t know what to do next.
Being diagnosed with breast cancer is where the discussion starts. Join host Shellie Turner in her new podcast that will shine light upon the darkness of diagnosis, giving you the support and information you need to keep moving forward from fellow fighters and survivors. We know you have questions, and this is a space where you can begin to find answers, community, and a voice for yourself in this journey. C. We Do Have a Voice welcomes you to the marvelous light of day.
Shellie:
Welcome to C We Do Have A Voice. I'm your host, Shelly Turner. Being diagnosed with breast cancer is where the discussion starts. Breast cancer doesn't care where you live. It doesn't care who you know, how healthy you are, how many initials you have behind your name, or what color your skin is. This podcast is a platform that will create discussion in order to help you find your story, your decisions, your information, and your understanding. Now let's get into it. So it's afternoon for you there and I do appreciate you coming on this morning. I am excited to hear from you. I'm excited to see you and I'm excited to come and see you soon. So we're going to talk about the platform that I've created. See, we do have a voice and the C is for cancer, obviously, but it's to let people know that cancer is going to start being the loudest voice in the room. We're not going to allow cancer to talk for us anymore. Per your bio and your organization, the rest of us, you're doing that. And you guys are speaking directly to cancer, but most importantly to African-American women who are on sort of, unfortunately, I say low on the totem pole when it comes to treatment, when it comes to conversation, when it comes to information. And I just kind of want to talk to you about like, you know, what was your reaction personally when you first got diagnosed and how did you get from that reaction to where you are now in your organization?
Marissa:
I would say when I was first diagnosed, definitely the fear. Fear was the first thing. I have a background in medical, and so I knew what treatment consisted of. I knew what that would look like. No matter your age of when you're being diagnosed, chemotherapy can be hard on your body. Just like my oncologist told me, she's basically killing me to save my life.
Shellie:
And they are, they're killing every other organ in your body, but we're going to save that cancer. Yeah.
Marissa:
You know, which is true. And so it was just, you know, honestly the fear. And I think now where I'm at, you know, in my experience or my diagnosis, it's just being able to help other women. conquer that fear, just know that they're not the only ones out here. There's resources for them to continue living their best life. You know, there was a lot of resources that are out here within the cancer community that I didn't know about or didn't have access to. And so, you know, one of my goals is making sure that black and brown women have access to those resources. So then that way they can continue living their best life regardless of whatever that looks like.
Shellie:
So what do you think are some of the unique challenges that black women as a whole experience with really the non-information of the doctors that don't have the information to give you and how do you reach out and where do you reach out? Because back in, I think, what, 98 when my first diagnosis, I didn't have any idea where to go. I had a breast cancer coordinator that gave me a bunch of pamphlets and all this information. None of it was relevant to me. First of all, just like you said, I was scared too. I cried all the way home because my doctor called me at work and told me, you know, that what was a cyst, what was supposed to be a cyst, turned out to actually be the cancer. But there was no information from me. There was like not call this person and now here you are offering this information. When did your organization start?
Marissa:
Back in May of 2019.
Shellie:
Okay. Yeah. So all this stuff is current, but back then, just like you said, you were scared. I was scared to death because the first thing I affiliated cancer with was death. I was going to die. So all the information, it's like, how do you actually get it out there to say you're in Atlanta, but across other states, you know, breast cancer month is in October, but women are diagnosed every single day. And there's just the information you'd really have to dig, dig, dig, or it's to know somebody that knows somebody that knows somebody. So how do you guys just really reach out and reach out how far?
Marissa:
But I think that that's the beauty of social media and the internet now. I think compared to when you were diagnosed versus when I was diagnosed, I had a lot of that information at my fingertips. Now, it's up to the patients or the caregivers or whoever it may be. and how they interpret that information and what they do with it. But like you said, your first diagnosis was back in 98. You didn't have access to any of that type of information. You only had access to the information that your breast cancer navigator gave to you, right? Whereas I did have a breast cancer navigator as well, but I still needed to find information for myself. And so that's, like I said, one of the beauties about For the Breast of Us and being an online organization is that we can reach women all across, not even just the United States, but across the world on our online platforms, whether that be our website, social media, whatever the case may be. But it is still word of mouth. We are a grassroots organization. And meaning, you know, when a black or brown woman who's been diagnosed with breast cancer, they find our group or they know about it, then they tell other friends that don't necessarily know about for the rest of us as well. But I guess I do have a question for you, because you did say that when your breast cancer coordinator gave you all this information, you know, it didn't pertain to you. So why do you think it didn't pertain to you?
Shellie:
It was just pamphlets from different breast cancer groups, how to navigate through the chemo, if you want to wear a wig, this is where you go buy a wig, where you can go purchase this turban. So it wasn't really any meat in that. She gave me a big folder. There was nothing in there that I said, oh my God, I need to know this. Oh, well, thank you for giving me that. And only through the second and the third diagnosis was I able to get more information. And my information has to be regarding African-American women. It just wasn't going to be any other information for me because my body's different. I'm different. My social life is different. Who I am is different. I'm not going to be like, you know, a white woman that's diagnosed. Our DNA is totally different. So I wanted to talk to somebody. I wanted to find somebody that knew how this was going to affect my body. And just like you said, I'm killing you to keep you alive. And nobody explained that to me. I found out about that. So in this booklet or bag she gave me, There were items, there were treats in there. And it was like, this is not a treat to me. I'm not looking for candy. I'm not looking for a bracelet. You know, so those types of things now, just like you said, social media is the meat to this thing. But for people that are not on social media and people that, you know, just sit in the office and the ones that want to be quiet about it, or they only want to tell one person or not even a family member because they really don't know where to go. And once you hear that C word, you think you're doomed. So there just wasn't any information in that bag for me. So I'm looking for like your organizations and other ones that have reached out to us. How do you get that information to us to give that information out, not just through social media?
Marissa:
Right. And so I guess I kind of want to challenge your your thinking and your thought, because it necessarily wasn't that what she gave you didn't pertain to you. It was more so that she didn't have more substance to give you besides just throwing you that information, which is what we hear within the community.
Shellie:
She's just at work.
Marissa:
They throw in this big package or this big bag, which is great. But then where do you start?
Shellie:
Yeah. Okay. What do you want me to do with this bag? You know, this is just the bag that somebody assembles, comes to work, assembles this bag for the next patient. Right. No care.
Marissa:
That's where we're trying to teach medical providers, you know, these breast cancer coordinators, navigators, things of that nature. It's like when you get a black woman, a Hispanic woman, or an Asian woman that comes to you and they've just been diagnosed with breast cancer, make sure that the information that you're giving them is something that will pertain to them. Also make sure that you ask them, you know, one thing that I've been telling providers and that I love that my doctor always does is, you know, once she explains every little part, she always says to me, okay, so repeat back to me, what did you understand that I said? And that's important. Right. And so that's what, you know, because I have, you know, my privileges is that I have a background in healthcare. So you can spit out something in medical jargon to me and I know how to translate that and I know what that means. But if somebody did the same thing to you, you're going to be looking at them like a deer in a headlight.
Shellie:
Exactly. And make, you know, that's why I always suggest to people that I know, it's like, take somebody with you to these appointments because you're not really going to hear, you're not going to hear and you're going to walk out and the doctor's going to say, well, I explained that to you. No, you didn't. So I always suggest that You take a you know get somebody your family member your best girlfriend or whatever to take you to go with you to these appointments Because let them take the notes, but just like you know, you make a good point when you say Accommodate us where we are Right give us the information that is for us and if you can't and we asked you to Don't wait for us to ask you. Suggest maybe you would be interested in this group or maybe you would be interested in going over here. And how do you navigate that with the caregivers? You know, your doctors, are they receptive to it?
Marissa:
I would say, you know, nine times out of ten, the medical providers are. I mean, you do get some, of course, who, you know, kind of push back and say, OK, I do this. And it's like, you know, yes, OK, maybe you do do this or maybe you do ask those questions. But are you asking them in a way? Are you saying it in a way? that the audience or the patient that's in front of you can understand that. And, you know, we have to stop doing a lot of, you know, patient blaming. You know, we already come into this diagnosis feeling like it's our fault that we've gotten breast cancer. You know, so we have to take that back. It's like, We can't keep blaming patients for them being diagnosed with breast cancer. Anything can happen. Everybody's diagnosed with cancer for whatever reason the case may be. We don't know what that is. And everybody's completely different, like you said at the beginning of this podcast. And so doctors and medical professionals need to stop doing that and actually just listen to what our concerns are and help us navigate because that's what they're here for. You know, that's another thing that my oncologist said to me is she said, I want you to think of this as being a partnership. It's just like you and I just riding in a car. You're the one that's driving it. I'm in the passenger seat. And I'll ask you, do you want to change the radio station to this? And if you do, then that's great. If you don't, then let's talk about it. Because I may have a feeling that I want to change your treatment plan or what you're doing for whatever reason. But if you don't understand that, you have the right to smack my hand and be like, you can't touch that dial. And so I love that because it is a partnership.
Shellie:
It becomes that with my oncologist. I am in love with him. I mean, he is, he's like a best friend, but when I have my visits now, they're shorter because you know, I'm done. I just go in just to, I think I go every twice a year now, but we talk about what we're talking about. We talk about things. We talk about new things. We talk about what people are going through. I've talked to some of his patients. just as an encouraging point. And that's why, you know, the point really of this platform is to create just that. to hook those that are out there swimming and swimming and they can't find the border. You know, let's hook them back in, let's give them the border, let them hold on to something that is really for them. So, you know, all the things that the caregivers provide, there's a limit. And just like you said, there's a limit to what a caregiver can actually give you information about or just really talk to you about. Some won't even answer questions because it's crossing the line. So, Like I said, with your organization, The Breast of Us, do you really feel like you're doing great work within the community that you serve right now?
Marissa:
I would say support-wise we are, and it's funny, I'm always my worst critic. So when you ask me a question like that, I always say, well, we could be doing more. I always feel like we're not doing enough. But if you were to ask any of our ambassadors who are a part of For the Rest of Us, or even the women who are in the community, they will always say to me, you're doing a lot. If it wasn't for you, I don't even know if I would get to this point. Or if it wasn't because of your organization, I don't know if I would be here. To answer that question, I would say yes, we are providing that support for women and I'm glad because I didn't have the same type of support when I was diagnosed. But I also know to decrease the health disparities that are out there and help more black and brown women, I know that there's more work that needs to be done.
Shellie:
Definitely, definitely. So when someone's looking to your organization for the support, is it a call in or is it all just social media?
Marissa:
Well, no, it's not all social media. I would say, you know, the majority of it is online. So, you know, we do, of course, have our Instagram page. We also have a private Facebook group on Facebook, which has about 3000 women, honestly, from all over the world, black and brown women who have been impacted by breast cancer. That group is, it's really powerful. And it's really active, you know, every single day, I would say we get, you know, over 150 women who are posting daily. in there and they're just asking questions, maybe looking for other women who live in their area so that way they can connect with them in person, looking for resources, reading any of the blogs on our site. So that is pretty active. We have started doing in-person meetups in the local cities all around the country where our ambassadors are at currently. Last year, we held our first fundraising, which was a sneaker ball, which was a celebration of survivors and thrivers all over the country. And we held that in Houston last year. So, you know, we do different efforts. I mean, besides that, we also do town halls. So that's from the education piece. So we do a town hall series where we're teaching women about clinical trials. Just this month, our town hall series was about navigating survivorship and mental health, because that's a big topic within the community as well. Like you said before, we try to meet the women where they're at. We try to listen to what it is that they need.
Shellie:
Okay. I mean, it's just, you should have existed for me in 1998. I mean, and, and that's why I say, you know, women that are being diagnosed as right now and you know, now currently, and it's important for them to know that these type of avenues are available. That's why it doesn't need to be a secret because whatever you ask for these days, you can get it because the organizations are out there. And just like you said, excuse me, the most important thing is face-to-face. So when you're actually meeting someone in their home or they're coming to you, that makes their day. That is where the healing begins when they know that somebody really cares enough to come out, meet me. We're going to talk and we're going to have a relationship. And they have, you know, offered me a hand and you walk with them hand to hand through the whole journey. And it makes such a difference. Even if they get bad news from the doctor, they can come to you. Right. and you're there, you're there with the support, you're there with the, you know, something else. But just being out of the doctor's office, being away from what the doctor said, and just being with somebody that really cares, that's going to help you, that's been there and, you know, has another answer for you. You may have something alternative because the doctors are not that into alternative. So when you can meet somebody and you can have that relationship, that's what I want to everybody to know that is out there for them. The relationships are there, but just it's important for them to know how do they get to that point.
Marissa:
Right. And one of the goals for the rest of us that we're leaning more into, and I would say in 2024, we'll be doing more of, we did a little bit this year, but it's definitely getting to these national breast cancer conferences that are all across the country. You know, there's a Young Survival Coalition. We went to theirs this past year. That was in February. Living Beyond Breast Cancer has a metastatic conference specifically for women who are diagnosed with metastatic breast cancer, but anybody can go to that conference. So that's in Philadelphia, usually in the spring. But just wanted to get these women to these larger conferences, so then that way not only can they meet other women, you know, especially other black and brown women exactly and connect with them. But then also they can go to these educational seminars that they have there and learn, even if it's just the basics of breast cancer, like the different types of breast cancer, what are the new advances in treatments? You know, if you have a partner, they can go to these conferences as well too. And they have special talks that are dedicated just to them. And so, you know, one of my goals for the rest of us is getting more women who want to be involved in patient advocacy. I always say you don't, You don't have to get into advocacy if you don't want to. I don't push people to do that. I, again, meet them where they're at and tell them that they should do whatever they feel is comfortable. But if you want to, then yes, let's get you to these conferences so you can learn about advocacy and prepare yourself as being a patient advocate.
Shellie:
And that's so important when you understand what advocacy is. Mm-hmm.
Marissa:
you know, within the medical community and just the breast cancer community as a whole, when they look at black and brown women, they automatically think we don't want to be involved in patient advocacy. We don't want to know this information. And it's like, no, that's a myth. You just don't give us that information. We don't know anything about it.
Shellie:
So we can't comment on what we don't know. We can't participate, but we haven't been offered to participate in. So that's not true. Advocacy is one of the most important things out of your treatment is that you have someone that can navigate with you.
Marissa:
Right. And advocacy looks different for everybody.
Shellie:
It does. It does.
Marissa:
You could go, you're going to Capitol Hill and you're talking to the Senate about passing a bill. Advocacy could be like what you said, just you going one-on-one with a woman to her doctor's appointment or being on the phone while she's at the doctor's appointment. You know, advocacy could be that you're just going to meet another survivor for coffee and, you know, answering some of her questions. So, you know, it looks different for everybody.
Shellie:
that companionship and that relationship with two people that are going through, that's priceless. It's priceless because you have that person now. And you might not have that person in your home. And a lot of times you don't have that person in your home. And, you know, the stories that you hear about the mate, you know, the partner that's just not on board. And I know you laugh because it's like, it's a thing. It's really a thing. It's a story. And it's like, they don't know how to be on board because they're scared too. But in them not knowing what's going on, they're not doing anything. And then you feel like you don't have anybody to talk to, because I can't even talk about it in my own home. And then that's where a lot of women shut down. It's like, no, please don't shut down. Please don't shut down. Because like I said, the organizations that are out there now, you being one of them, you're available. And that's just the key word, you're available. And women need to know how much is available. And when you talk about all, you know, the conferences you go to and the things, the people that you reach out, how you guys talk to maybe 150 women a day. That's amazing. That is truly amazing because that means you're creating new relationships the whole way. And those relationships will create more relationships because it'll be like, oh, I talked to so-and-so and they were there and they really helped me. Right. And that's what it is. The help is there now.
Marissa:
Mm hmm. Yeah. I have some of my, my best girlfriends right now that I actually wouldn't have met if it wasn't just being connected with them.
Shellie:
Exactly. And I love that because now you my girlfriend. So now like, you know, cause it's like when you can have a conversation with someone that knows, and has been there and has the same goal that you have, and that is to get the information out because information is healing. It's just, that's the bottom line for me. The information will heal you regardless of where you are, what you're going through. It'll heal some part of your body. You'll get peace and you'll be restored just knowing, okay, This is a place for me where I can talk. They've created, you know, the the lying downs in the green pastures for me and I can lay there and I can be restored there. And that's all. And you may be sick from chemo, sick from radiation, sick, whatever your treatment is. But if you can pick up the phone or you can go online and just say to that person or you have an advocate that knows you just got back from treatment that calls to check on you or even stops by. All that makes the difference. All that makes the difference. If you if you can just share with somebody and know that there's a village of women out there and they really do have your back, you know, they really do have your back. So
Marissa:
And you know, there's power in, you know, telling your story when for the rest of us, you know, we started back in 2019, you know, we were started just as, and I don't want to say just because that sounds small, right? But, you know, it was a platform for women of color to write about their stories and their experiences of being diagnosed with breast cancer from every different type of spectrum. And, you know, it's just powerful to read those stories even still to this day, but even for them, powerful for them because they were being vulnerable and sharing a part of them that a lot of them hadn't shared with anybody before. And so being able to give them the platform to be able to do that is, you know, a great experience. I know for me, when I first, you know, shared pictures online of myself being bald, it was so freeing for me. Like I remember breaking down crying because, you know, I never thought I would do that. I was, you know, quote unquote ashamed because I had, you know, before I was diagnosed, I had really long, thick hair. And so for it to all be gone was like devastating for me, right? But then being able to share that with the world and, you know, just my testimony and my experience, it was just freeing for me. So every time a woman writes a story for us about her experience, you know, I don't take that lightly because I know what it was, what it took for them to get to that point to even share that experience or that story with us or just with the world.
Shellie:
No woman wants to be bald, first of all. And when they tell you that, you know, with the chemo, people that don't have cancer know that women with cancer are going to be bald. You're going to be bald. You're going to be bald. So when my hair first started coming out, I started brushing it. And she told me, I think I braided my hair because not knowing. And I had a doctor's visit. He goes, I don't know why you braided your hair. I said, because I don't want my hair to fall out. He said five to 10 days. And on the 10th day, like clock, I was brushing my hair and I'm like, Oh, you know that little chihuahua that has a few strands at the top of his head? That's what I look like. And I'm like, you gotta be kidding me. So at the time I was married, all my hair was in the trash and I took it to my husband. I go, look, he goes, he looked like a deer in headlights. He was like, that's your hair? I was like, yes. And I told my sister-in-law, I said, come cut my hair off, because I'm not going to do this strand by strand. And you're right. It was like, it's done. I'm done. I'm OK with it. And my husband's like, oh, well, we'll get you a great wig. I'm like, I don't wear wigs. I'm not going to wear a wig. And I bought a bunch of beautiful scarves, and I was bald. And at the point I saw just a little peach fuzz, I was done with the scarves. It is freeing. And then you realize you're not the hair and the hair is not you. And you go on with your business because you are now on a new journey. So whatever was the hang up with hair, that passed.
Marissa:
Yeah, but it takes a while. Oh, it does. As black and brown women, we are definitely proud. We love our hair. Yeah, our hair is our crown. And so, you know, I get it. I mean, I still honestly, I actually still have all of my hair that fell out. you know, my best friend, she saved it for me.
Shellie:
Really?
Marissa:
Really? And I didn't want her to. I was just like, I don't want it. She was like, no. So I remember her going around and picking up clumps of it. And then, you know, once I was done with active treatment, she gave it to me and she was like, I know you told me not to save this, but here you go. And I still haven't parted with it. I want to because I know that that will just release whatever it needs to be. But yeah, I still have it.
Shellie:
When you talk to people, everybody has a story. Now that story, that's a new one. But it's whatever you have. It's whatever you do. So that's why I say the stories, no two women are going to ever have the same story that have been diagnosed with breast cancer. No, no, no, no, no. So that's why it's important that you continue, continue, continue to do what you're doing. And the reach out is amazing that you, you know, whatever, however, we can help you reach out. That's the platform that's created here for your organization to be continued in representation and the information. So I think I mentioned, or do we have information like how could we do more to get your information out here in Los Angeles?
Marissa:
Well, people can always go to breastofus.com. That's first and foremost, and read, and most importantly, share the stories that are written on there by women of color who have been impacted by breast cancer. It's great to go on there and read all the stories. Like I said, there's beautiful stories on there, but the most important thing is definitely sharing those, whether that's sharing with somebody you know that was recently diagnosed with breast cancer, no matter if they're black or white, but even just sharing them with medical providers you know, the community as a whole. So that's first and foremost. We also have a podcast called Batty to Batty. So people can go and listen to, you know, women kind of how we're doing talking here, just like you're talking to their girlfriend, and they're talking about every different things, you know, whether that's, you know, what it's like navigating a relationship now that they've been diagnosed, you know, navigating the healthcare system, You know, we hear particularly from women who have been diagnosed with metastatic breast cancer and their experience, or, you know, Asian American women and what their experience is like as well. So we have that. And then we also have many campaigns that highlight and elevate the stories and voices of women of color, like our When You See Us campaign, where we demanded that the breast cancer community as whole recognize women of color as patient advocates and patients. all together. And then we have our Naked Truth Project, where that just showed the beautiful images and, again, stories of black and brown women and what their choice was when it comes to reconstruction surgery. So all of that's on our website. And, you know, I implore everyone to share that information that's there.
Shellie:
Cause I saw that picture with the girls and everybody had their breasts exposed and I was like, that's cool. I said, now that I could do because I did opt to have my breasts removed cause I'm just, I was just done. And then the cancer came back the last time, still came back after my breasts, you know, they were removed. So that's another myth. But I love that picture. I love that. I thought that was so cute.
Marissa:
And it's the first of its kinds. We were the first to do it, yeah. It was definitely the first of a kind and it's definitely, it's beautiful, it's powerful. A lot of the women in that picture, you know, have never done anything like that. So I remember at the photo shoot, some of them, you know, were crying tears of joy because again, it's a freeing experience for them.
Shellie:
Right, exactly. Because it's like, if she can do it, I can do it. And then we can stand here together. We can hold hands. We can embrace. But this is us now. Right. This is us. Right. I loved it. I thought that was really cute. Congratulations. Thank you. That was great.
Marissa:
Thank you. So one way to support us is we have a newly created foundation called For the Rest of Us Foundation. You can learn more about the foundation at restofusfoundation.org. And with this foundation, we will be helping women, as I stated before, get to advocacy training and conferences, and then also helping them with the financial toxicity of cancer with grants as well. So if you head on over to that website, you can make a donation and help support the work that we're doing.
Shellie:
I really appreciate your time. I really appreciate your heart because you have shared your heart. You, like I said, you're my new friend. So you, my new girlfriend, it's just because this is a new relationships, but thank you for being a part of this because I want to partner with you doing the same thing you do, because there's never going to be enough. There's never going to be enough. So I am just. I'm it's my pleasure to have you on and to speak with you and to be acquainted with you and the rest of us. And I look forward to it.
Marissa:
Yes. No, thank you so much for having me on. I truly appreciate it. And like you said, I look forward to us partnering together even more in the future.
Shellie:
Thanks, everyone, for listening. Make sure to follow and rate the show wherever you get your podcast. This podcast is produced by Rainbow Creative with executive producer Matthew Jones, producers Steven Selnick and editors and mixers Rob Johnson and Stefano Montelli. See you on the next one.
keywords: stand up to cancer, cancer, breast cancer, cancer research, health, womens health, woman health, black women health, black women wellness