[00:00:00] Adam Walker: In honor of National Breast Cancer Awareness Month, if you’d like to join the Fight against Breast Cancer, please go to www.Komen.org to donate today.
From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
This is Real Talk, a new content series where we’re going to break down the stigmas and feelings of embarrassment and talk openly and honestly about just how difficult breast cancer can be – from diagnosis, to treatment, to living with metastatic breast cancer, to life after treatment ends. Who better to kick off this series than Paula Schneider, the President and CEO of Susan G. Komen, and a 15-year breast cancer survivor. Paula let’s get real about breast cancer. Welcome to the show.
[00:00:57] Paula Schneider: Thanks. Thanks for having me.
[00:00:58] Adam Walker: It’s always a pleasure. I love talking to you about this stuff. Your perspective is always so intriguing and inspiring and and I look forward to having some Real Talk here. So to tell us more about Real Talk and how this became a focus for Komen.
[00:01:13] Paula Schneider: Well, you know, it’s, it’s interesting because a lot of times if you go to one of our races and walks or you experience some of the things that we do for our community, it feels very happy. And, you know, there’s pink pom pos and we’re celebrating survivorship and being, and it, it’s just not that way for everyone.
And even those that are survivors or have had the opportunity to, let’s say, ring the bell because that’s the end of the, of treatment. You get to ring the bell. The crap that you have gotten had to go. Up until that point to be able to ring the bell is, is a lot, you know, surgery, radiation, your body changes yeah, issues with body imaging, acceptance and, and your, basically your life changes.
And those are really, really tough experiences. And for those people that are metastatic, they’re going to be in treatment forever and they’re living from scan to scan, which is terrify. I mean, it just really is because I know, you know, I have had no evidence of disease for a long time now, but I still, when I go and get my ultrasounds or my MRIs, it’s, it’s, it’s fraught with nerves.
It makes me so anxious to go there and, you know, so I, I know what people are feeling and as an organization, we need to talk about what people are going through and what every day looks like, and the good and the bad, and the horrible. And you know, getting yourself out of bed or feeling secure enough to change your clothes in front of your spouse when your breasts look different or aren’t there.
And we need to normalize these experiences, their lived experiences, and be honest about what it’s like to go through breast cancer and to live with breast cancer physically and mentally. . And, and you know, I, I will say that I, I am all for Real Talk, but I really want to put this out there from the very beginning.
You’ve got to fear the disease more than you fear the cures or the opportunity to be cured, you know? So I don’t want people to hear this and go, Well, if I ever got it, I wouldn’t go through chemotherapy, or I wouldn’t get a mastectomy or any of those things. And, and quite frankly, That, that’s the wrong attitude if you want to stay alive.
[00:03:21] Adam Walker: Yeah. Now I appreciate you sharing that, especially that last part. You’re right. We, you, you, you have to fear the disease far more than anything else. So you mentioned that you’ve been through breast cancer. We’ve, we’ve certainly talked about that before on this show. I, I understand you also lost your mom to metastatic breast cancer.
Can you talk about some of the tough things that you went through with that, that maybe at first you didn’t feel comfortable talking?
[00:03:45] Paula Schneider: Well, I remember you know, one of, if I ever had to be a movie actress and, and have muster that moment where I had to. You know, and think about the thoughts that could make you cry.
There would be one very vivid moment in my breast cancer journey, like my mom had had it, and then she was okay for quite a while. And then I had it. And having her come down and, you know, she, she had hurt her back so she couldn’t travel while I was in the part while I was in the midst of, of treatment.
So the first time that she could come down, and now of course I couldn’t get to her either, right? And we wanted to be together. and we talked every day. But I remember the worst thing ever for me was, was not only first telling her that I had breast cancer, because it was devastating to her. Mm. I remember when she came down and, and I said to her, you know, I was wearing my wig.
And I said, Do you want to see my head? And she said, Yeah, and just both of us burst into tears and it was, It’s tough. It’s tough. It’s hard moments and it’s hard moments like that that, that, you know, those are the tough things that you go through. And, you know, I, I, I can’t say that at, at any point in time that I felt, didn’t feel comfortable talking about my own breast cancer diagnosis.
And way before I was at Cohen, because I’ve only been here for five years, I had breast cancer and I became sort of the poster child of breast cancer for all my friends who had friends that ever met anyone that had breast cancer. And they’d say, You gotta call Paula. Because, and I, and I volunteered and happily speak with anyone because, you know, I know what they were about to go through.
I had incredibly difficult chemo because I had triple negative breast cancer, which is, you know, which just means the, it’s the, it’s not any of the three types of breast cancers that have better treatments. So they just hit you with their best shot. And it was tough. And I’m tough as nails, so it was really hard.
But, you know, I, I think I, I’ve always been sort of like, let’s talk about it and let’s get out there and let’s be honest about it and, you know, and, and have someone who, who needs your help or needs to be able to hear that this is someone who’s through the other side and how’d you do it?
[00:06:02] Adam Walker: Yeah. Yeah, that’s, that’s fantastic.
So it occurs to me like Komen has made amazing strides in breaking down the stigma of breast cancer. I mean, just for a lot of people, when you think breast cancer, you think Komen and, and, and so how can these Real Talk conversations do even more to help normalize what people are going through or the feelings that they’re feeling?
[00:06:27] Paula Schneider: Yeah. I think getting the issues out and open makes them feel real, right? Because what patients and, and the people that are taking care of them and their support systems are experiencing is very, very real. Mm. You know, we can’t hide what we’re going through because that sets back the progress that we are making.
And we need to make this as a community, and you need to share those experiences. If, if people want to know about it, you know, it’s, it’s not easy. But it’s, it’s the reality of what it looks like. I mean, I. Couldn’t I, I had chemotherapy that literally they don’t do anymore. I just recently went to my oncologist cause I moved to a new city and I wanted to have an oncologist.
I don’t need one, but I wanted one. In case I needed one. And I just wanted to have some kind of a relationship. And you know, he told me that, wow, you had probably the most difficult type of chemotherapy that there was. And we don’t even do that anymore because so few people could make it through the. And I can understand that.
I mean, I could call them up and say, Oh my God, my head just fell off my shoulders and it’s rolling down the street. What should I do? And they’d say, Oh yeah, it’s just from chemo. I mean, you everything you could possibly imagine and you’re thinking this can’t be normal. I mean, I don’t know how people can endure this.
But, you know, I had to have my family around all the time for when I would have chemo. I would have literally a day of okay, and then I, it would hit me and I would have nine days in bed. And before I would get up again, and then it would start raising pretty dramatically and quickly to where you’d feel much better faster.
But it took like eight, nine days before I could move. And for the first few days I’d have to have my husband help me to get up to go to the bathroom. And the, the, the tired is like something that you’ve never felt before. I’d go out, I’m thirsty in my mind, and then I’d look at the glass of water and it was like four inches from me and I’d go, Okay, gotta reach for the water.
And, you know, I mean, you, you don’t even think about that in your normal world, but it, it’s, it’s tough. It’s tough and, and, and hopefully people will not have to experience that rough of a treatment for, for the most part, they won’t. You know, I’ve had a, a multitude of people that I know have gone through chemo.
It’s not a walk in the park by any means, and I’m not meaning to say that, but it’s much better, It’s a much better experience now than it was 15 years ago because of all the strides that that, that we have made and making it a better experience, better outcomes, and more comfortable to live with it.
[00:08:55] Adam Walker: I mean, I, I would say, I mean, just in the, in the short time we’ve had this podcast, I mean, just the amount of strides that that have been made in in this field are just astounding and, and just continues to be moving forward at such a fast pace. So besides normalizing these conversations and feelings, why do you think it’s so important to talk about these tough issues and experiences?
[00:09:16] Paula Schneider: Well, when you’re, when you’re going through something that’s really, really hard, and it could be anything, it could be a breakup or a job loss or anything, it’s, it’s really easy to feel that, that tunnel vision, that you’re the only one that’s ever had this experience.
But there are more than 280,000 people in the US who’s who are going to be diagnosed with breast cancer just this year. And that’s 280,000 people that are going to experience something like you do. And I promise you that plenty of people have had the same thoughts and the same feelings, and the same experiences, and the same disappointments, and, and many, many, many of the same struggles.
And I can also promise you that there are hundreds of thousands of people who aren’t talking about it. Because when, when you’re diagnosed with breast cancer, you join a club, it’s a crappy club and no one wants to join it, but it’s a club. And our shared experience that we have can help one another and we can help to cope better.
We can process better. Hopefully we can heal better and we can all be better by talking about whatever it is. Because you know, when you. A group of people are, are, when anyone’s talking about something and it’s a shared experience, it’s no longer embarrassing. I hope people don’t ever feel that it’s embarrassing cause it’s not something that you can control, but it it, you’re no longer the one person to ever, ever felt a certain way or thought a certain way or experienced a certain thing.
So I want to get people talking and sharing, and I want people to know that breast cancer is, It isn’t that always, you know, the pink tutus and the smiles there, there’s tears and there’s lots and lots of tears. I remember I used to tell, you know, I never cried really very much at all. I was pretty much tough as nails.
I could watch a Hallmark commercial and be balling. And I mean, this is just, it’s a complete takeover of your body. And there’s heartache and there’s loss, and not everybody makes it through.
[00:11:10] Adam Walker: Mm, Yeah. Yeah, that’s right. For anyone listening to our conversation, what do you want them to know about what they’re going through, either as a breast cancer patient or as a loved one caring for someone with breast cancer?
[00:11:24] Paula Schneider: I think if you reach out and ask for help, you’ll get help. You know, I, I’ve said that the, I’ve even given speeches about being the most empowered when I was the least physically powerful when I had breast cancer. And the reason that I felt that way is because I was used to being large and in charge.
I ran my family, I ran my, you know, significant businesses and all of the things where you feel like you’re large and in charge of so many different things, and then all of a sudden you can’t do things like you did. And you have to be able to ask for help. And the beauty that comes from that of so many people standing up and saying, Let me help you.
I’ll do this, I’ll do that. Whatever it might be. I have some of the best friends that I’ve ever made in my life are the ones that I ha made during breast cancer because they stood up and they were there for. And, you know, and on the other side there’s some that don’t know how to stand up or be there for you.
So you’re probably going to experience that too. And, and that’s tough, right? Because I had, you know, a couple of good friends that just literally had no idea how to manage or talk or reach out to me. So they didn’t, And you know, and quite frankly, they’re not my friends anymore because if you don’t show up for.
Then what do you show up for? And you know, it, it’s okay. People say the wrong things all the time because people don’t know what to say. I had people that would come up and ask me like, you know, what stage are you and are, are you, is it terminal? And you know, things like that that you’re like, okay, first of all, that’s so inappropriate for you to ask someone.
And if I want to share what stage I am and what are you going to do with that information? You know, so it, it’s, it’s, But I knew that the people that that would said this to me, were actually doing it out of caring. Right? Yeah. So, you know, you just try to educate as you go. That’s saying, well, you know, I’m not really comfortable with that, but and I hope I’m not going to die.
But, you know, but I don’t think that that’s an appropriate question to ask anyone. Yeah. But there are, you know, there, it’s just, it’s just a different set of circumstances than you’ve ever had to deal with before and you have to also have a little bit of grace to help those that are around you to not, that it’s your responsibility, especially when you’re drained and you’re feeling.
Lousy, but you do have to help those around you to understand what you need and what the boundaries are. Yeah.
[00:13:45] Adam Walker: And, and you mentioned as part of your answer, like ask for help and get help. And so in, in light of that, can you talk through some services that come offers to help those people that are dealing with, with tough circumstances?
[00:13:57] Paula Schneider: Yeah, yeah. I, I, I can you know, Komen is here. To directly support patients and, and whoever’s taking care of their loved ones, their support systems. And we have a patient care services center that offers some really incredible and important resources for patients and in some cases their loved ones.
And we provide financial assistance directly to patients. And, you know, if you, if you can’t afford your healthcare, if you can’t afford your medications, or if you can’t afford your rent or you’re making choices because you can’t. You have to put food on the table or buy your meds, then you need to call us and see if we can help you.
And it’s a helpline where anyone can call and receive mental and emotional support from trained professionals. Sometimes it’s just really good to be able to have a call and to have someone walk you through it. Because a lot of times when you go to the doctor, you, you’re, they’ll say one thing and you’re so triggered in thinking about what that is.
You can’t even follow along the conversation. So the helpline staff can also put you in touch with resources and, and people and their communities. Mm. So, and during the need, during a diagnosis and treatment is great, but no one should have to go through breast cancer alone. So all you need to do is call 1 8 7 7 go Komen.
And the helpline will be there to assist you. And we’ve got amazing people on the helpline and, and we are constantly using some, some of these stories that people share with us. We don’t use it without any permission of course, but you know, just to, to help us to tell the stories and to be able to garner the ability to, to.
Really be impactful, right? Because we, when we help people, we’re helping each one of those people better their lives. Mm-hmm. and it’s, it’s an amazing feeling to be able to do that.
[00:15:51] Adam Walker: That’s fantastic. Just to reiterate that helpline is 1, 8, 7, 7 Go Komen. Just want to make sure our listeners have that.
[00:15:58] Paula Schneider: Yeah. And Komen is with a K., K O M E N.
[00:16:00] Adam Walker: That’s right. That’s right. So what are some other topics we can expect to hear throughout this series?
[00:16:07] Paula Schneider: Oh, we have a lot. We have a lot in store for the listeners, and I’m really excited that Komen’s leading these conversations because I think they’re really important.
And later this month we’re going to get real about mental health and an emotional and mental trauma. Suicide and coping with the changes during and after a diagnosis. There’s palliative care side effect management, marijuana use, dating after a diagnosis or just some of the topics we’ll explore. You know, I’ve had a lot of friends that have gone out and said, God, I, I don’t know if I can date again.
Because if I ever wanted to be intimate with somebody, you know, can I take off my clothes? I’m like, Wait. It just, you know, these are these for real topics that are out there. And we’ve, we’ve gotta talk about like all of the sides of the situations, no matter how ugly it gets. And we want people to know that they’re not alone in what they may be thinking or feeling or experiencing because they’re not. And breast cancer sucks and there’s just no way around it.
[00:17:03] Adam Walker: Yeah. We have to have these conversations. We have to have these convers because they’re helpful conversations. And so I’m excited, I’m excited about Real Talk. It’s, I. It’s important to have these conversations. It’s real. It’s real. It’s real.
Well, Paula this is amazing. Thank you so much for the work that you’re doing and, and thanks for coming on the show to tell us about this this new initiative. This is going to be great.
[00:17:25] Paula Schneider: Yeah, I think so. I think it’ll be really helpful. And for those people that feel that you’re alone, you’re not alone.
[00:17:35] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com.