[00:00:00] Adam Walker: 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 podcast 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. September is Hispanic Heritage Month.
Breast cancer is the most common form of cancer among Latinas today, and I’m pleased to welcome two women who can help break down the cultural and personal stigmas about breast cancer in the Latina community. Ashley Fernandez and Brenda Nelson are also living with metastatic breast cancer, the most advanced stage of breast cancer that cannot be cured.
They’ve both felt that making friends in a new community has been hard and they didn’t want to overshare about their lives, but also wanted to be genuine and form new friendships. Ashley and Brenda, thank you for joining us today to share your experiences and talk about personal barriers that you’ve had to overcome and welcome to the show.
[00:01:14] Brenda Nelson: Thank you for having us.
[00:01:16] Ashley Fernandez: Yes. Thanks for having us, Adam.
[00:01:18] Adam Walker: Well, this is a really important conversation. We’d love to start by just getting to know the two of you. So, Brenda, why don’t you start by telling us about your breast cancer diagnosis and how you’re doing today. And then Ashley, we’d love to hear from you as well.
[00:01:30] Brenda Nelson: Hello! So, yes. In October I was not feeling well and ended up in the ER. They ran some tests. They found out that I had something going on. They weren’t quite sure what it was, but my liver was covered in tumors, so that’s what got the ball rolling. I ended up getting a referral to MD Anderson and they did their testing and pretty quickly my second day there, I was told that I had stage four metastatic breast cancer and it was attacking my liver.
So right away we started chemotherapy. I was admitted because my liver was so sick. They had to monitor me through the chemo, so I was admitted. And we started treatment and of course I felt like I was on a rollercoaster with eyes tightly shut and just, you know, the grip of life and just, there was no time for crying asking why me, why Lord, nothing like that. It was like, okay, let’s do this. Let’s get the ball rolling now that we know what we’re dealing with, let’s go. So, I started my treatment and of course there’s ups and downs and now the hospital, but my last scan shows that I have no liver cancer metastasis anymore or any metastasis in my body.
So every 21 days I got, I think, 12 chemo rounds. And every 21 days I go for antibodies. So every 21 days, it’s antibodies, every three months scans. So I celebrate in 21 day increments. Yes, so my last scan was good and we’re gonna celebrate that.
[00:03:21] Adam Walker: That’s fantastic. And Ashley, how about your story?
[00:03:24] Ashley Fernandez: Hey Brenda. That’s so awesome. So I was diagnosed at 31, same like Brenda, de Novo, like it was stage four from the beginning, and that was in April of 2018. So I had just, I just hit five years. So that’s a big milestone to celebrate too. Yeah. So my story kind of started off my husband’s in the military, so we moved around a lot.
We were in Alaska, and I felt like a little lump, but I didn’t know if it was a lump. I went to the doctor just to make sure, and I kind of got made to feel like I was a hypochondriac because I was nothing there. I was too young for cancer and all these other things. That was October, and then in March my body started hurting.
I went back and the lump was no longer there, but I finally got someone to listen to me after advocating and going to patient advocacy, they helped me out and I was able to get a diagnosis. We found out that yes, it was breast cancer, and when I started telling the oncologist about like my other body aches, they performed a bone scan and I looked like a Christmas tree because I lit up from my head to my toes.
So I’m living with triple positive metastatic breast cancer bomex, they’re expansive bomex. I get scans every three months. I just graduated to every six months after five years, and I’m pretty excited about that. But like you, Brenda, it is a rollercoaster ride and I love how you explained it. You just hold on tight and close your eyes. I, too, never asked why. I just wanted to get through it because I had a three-year-old who’s about to be nine. So I’m just so happy to still be here and able to celebrate little milestones, big milestones, and lots of mile markers in between, and just enjoying every single part of it.
[00:05:13] Adam Walker: That’s fantastic. And so what I’d love to do, if you don’t mind is I’d love for you to just both start talk about your experience as a Latina receiving medical care. I’m obviously not a part of this community, so I’m going stay out of your way, but I’d love for you to share. If you would.
[00:05:28] Ashley Fernandez: Awesome. So, Brenda, for you, was it hard like to get access to care?
[00:05:35] Brenda Nelson: No I was able to, I was always able to see the doctor, but just like you, people thought I was a hypochondriac. I kept telling the doctors that I didn’t feel well. I’m losing weight just randomly I would lose ten, fifteen pounds. They would run my labs, say, “Your labs look great.” And this is really crazy. I would almost always bring my husband along because I felt like they would listen to me more if my husband was with me. And I would always get the pat on the back. “You need to go get massages. You need to, you know, Take a break. You’re working too hard.” And started thinking myself, is this, “Am I a hypochondriac? Am I making this stuff up?” And so I would work out, I eat right. And of course, when you workout, your energy goes up. So I’d be like, okay. Maybe that’s what I needed was be more proactive. Yeah. But now that I think back it was my last doctor visit in in Illinois that I told the doctor that I have pain around my back, where my liver was located.
And he was like, “There’s nothing there.” And I said, “My liver’s there.” And he said, “I did your labs. They’re fine. He’s like, you just really need a massage. Take a hot shower.” And I just think I feel that’s when it went to my liver. I also for years got diagnostic mammograms, which are the mammograms, where the physician’s present.
And I had to get them yearly because of dense breast tissue. And so there was no one in my family that had breast cancer-
[00:07:22] Ashley Fernandez: Same.
[00:07:23] Brenda Nelson: No history of cancer. So I thought these yearly mammograms were like, a little over the top because there was no cancer in the family. I had always heard Hispanics don’t have breast cancer. That wasn’t one of the ones that we would have. So why would I have it when no one in my family have it, has it? I also have four older sisters. Surely one of them would’ve gotten it before me. But that’s not the way it works. And I was the first person in my family to get a cancer diagnosis.
[00:07:57] Ashley Fernandez: We have so many similarities. Mine too. Yeah. One of the youngest, 26 cousins, like seven aunts and uncles, like huge family and I was the first one. No family history.
[00:08:10] Brenda Nelson: Yeah. At the time of my diagnosis. Well, my, my mother’s still living, but my dad has passed away. But at the time he was still alive. All his siblings were still alive. Eighties. Late eighties. My mother’s side also. All still living-
[00:08:26] Ashley Fernandez: Like healthy for the most part.
[00:08:27] Brenda Nelson: And here I am number, baby of five girls with this diagnosis, that also is really hard for everyone in my family to wrap their head around because they’ve never dealt with it. They’ve never had someone that’s close to them to get a diagnosis.
[00:08:45] Ashley Fernandez: I’m so glad you said that. Like most of the time, Hispanics and Latinos, like our family units, everything, right? Like we support each other and we’re there through thick and thin. So it’s hard when something like this hits because yeah, it’s happening to us, but it hits all of them in a different kind of way.
[00:09:01] Brenda Nelson: And everybody deals with it in different ways. I’ve seen where. Some of my siblings want to be on top of it, know everything. And others, it’s too hard. They don’t want to, they, I sometimes think, well, if we don’t talk about it, you think it doesn’t exist, but it does. And I have to deal with this. And it’s like you said, it’s stage four. It’s the last stage. Metastatic. I’m a registered nurse also, so-
[00:09:29] Ashley Fernandez: Oh, wow.
[00:09:29] Brenda Nelson: When I was told stage fou r, you know, it was like, okay, is it, you know, you just think, okay, do I need to get things? What do I need to get in order? I have I had a 14 year old at home, one that was about to graduate college, a 22 year old, his senior year and then my daughter that had just recently been married and was living up north because she found her happily ever after while we were up there. So she stayed. We came home, Texas is our home. And so it was like, what do you do? And I didn’t know of all the treatments that are available. I didn’t know what the outcome was gonna be, but I, so we live on, yours has been longer, mine’s still a little fresh. I haven’t hit my year. So I’m living on 21 day celebrations.
[00:10:20] Ashley Fernandez: Increments.
[00:10:21] Brenda Nelson: Yeah.
[00:10:21] Ashley Fernandez: I’m still doing that, five years in. So when you said that, I was like, yeah, because you have to be in the present. And as long as we’re being intentional with our time, intentional with the present, I feel like that really helps. I do the same exact thing. I get treatment every 21 days, so my days are on Wednesdays and I do the same exact thing you do as soon as I go for my treatment, I celebrate because yay, I was able to do it. I thank God I’m still here. You know, like I just praise Him. But also I celebrate time with my family or my husband takes me out.
Or like this week my husband’s gone and my mom’s coming home with me and she’ll be doing treatment with me and we’ll have a girl’s day. We’ll probably hit the beach the day before, but I do the same exact thing. I just celebrate little wins and they’re like little big wins. So for, there was a time when I couldn’t walk because I was so sick, like my fatigue got the best of me.
I had tumors in my lungs that disappeared. Like I’ve witnessed so many me miracles and the research has gotten so much better from when I first started in 2018. It’s just, I just keep thinking that like, let me hold on. So if something happens, there’s more. But since I’ve been an active treatment, I was able to change treatment because I caught sepsis through my port and the treatment that I changed to was just approved by the FDA like two weeks after I caught my sepsis. Like what? And it’s a shot now, so it’s called subQ. Instead of sitting there for 90 minutes, you get a shot and you’re in and out in 10 minutes. So I got back some quality of life too. So that’s a little bit of hope too because Yes, because researchers are just doing it and they’re taking into account that, hey, we matter, they’re taking our voices and as long as we continue to advocate for research, I feel like more and more is just gonna keep coming. And I’m really hopeful that one day, one day, like there’ll be more treatment options that we could just live and be happy and necessarily maybe, I don’t know if we’ll get a cure, but at least it’ll be like a chronic illness and not like this death sentence, even though I don’t like to look at it that way.
[00:12:33] Brenda Nelson: Right. Exactly. Yeah. I’m like you I see. I wrote my story out and I call it pink light, and every time I say pink light that’s when I feel the Lord has intervened for me and that was this huge for this whole rollercoaster ride is the anxiety that I lived with and would go to the doctor for because I’d say “I don’t feel good, something’s not right.” And in fact, it was probably two weeks before my diagnosis, I had one of my worst panic attacks. I remember having to call my husband and telling him, okay, just stay on the phone with me until I get home.
But I really now think my body was trying to signal me and tell me something’s not right here and it’s getting really bad. Because it was the worst one I had. And it’s so interesting now, even with this diagnosis, I don’t have the anxiety at all that I used to have.
[00:13:32] Ashley Fernandez: It’s a piece of overwhelming, isn’t it?
[00:13:34] Brenda Nelson: Yes. It’s, and I try to tell people that in fact I had lost a friend probably six months to cancer. And I remember talking to her and asking her how she was keeping it together. because I said I would be a basket case. And she said, you know, I’m not scared to die. And I, at the time, I didn’t understand what she was talking about.
After my diagnosis, the piece that over came me was overwhelming. I mean, the doctors and the nurses, everybody came in and they’re looking at my husband and I like, are y’all gonna like break down or? And I just told him I didn’t want to see the scans. I walked by faith, not by sight. And we’re gonna get this figured out.
I don’t know what’s going on, but He knows what’s going on and I’m gonna trust Him. And so that’s how I walked this with the peace that it’s clear, it surpasses all understanding. And I’m very thankful for it. Yes, I am.
[00:14:42] Ashley Fernandez: I love that. I feel the same exact way. I think it hit me three days later. It hit me three days later after I was diagnosed and I got that thing. I got the call and we were in Alaska there was no family there. We were on our way to move to Japan and it was just a lot of moving pieces at once. And I remember the third day. I didn’t cry, I didn’t say anything, and I just fell on my knees and I was like, “Hey Lord, I can’t do this by myself. Like I need you to take it and intervene and just help me.” And I swear Brenda, from that day, it’s like, can’t walk. Oh man, that sucks. Oh, you’re in the hospital, man, that stinks. Okay, God, come on. But He always comes through like there’s been more lows. There’s been more highs than lows, but there’s been some real bad lows.
[00:15:28] Brenda Nelson: Right.
[00:15:29] Ashley Fernandez: And one of the ones that I have a hard time with is like quality of life, because when I feel good, I want to do everything. And I have a little kid, so then I try to go, but then my energy tank isn’t go. So that I’m paying for it for like three days later and it’s like, okay, I need to figure out how to disperse this energy. But then I started going to a thing called palliative care.
[00:15:54] Brenda Nelson: And as a nurse, that word scares me. That’s like palliative care. And when I was told that, that we’re just trying to do this, you’re not gonna be here.
[00:16:03] Ashley Fernandez: When you hear palliative care, you think, oh, it’s hospice, or-
[00:16:08] Brenda Nelson: “We’re just trying to make you comfortable.”
[00:16:10] Ashley Fernandez: Yeah, no. So what they do is they treat all the symptoms that chemo puts us in. All the true treatments. They have special psychologists that you can talk to. They have like, if you’re feeling weak, If you’re feeling like you want to work a muscle mass, they have special OTs and PTs, physical therapists that can work through it, and that has been a game changer for me.
I’ve been in that for three years now and I feel like my life has just improved so much. Right now I moved from Ohio to North Carolina and I’m having a hard time getting access to that because, like you or like others, people think when you’re asking for palliative care, you’re done. But for me, it’s not giving up for me. It’s like, hey, it’s helping me and I know what I gained from it, so I want it. And my oncologist right now is ” Oh, but you’re not there yet.” Yes I am. I am there yet. I might not look like it, but I’m there, so I need to put that referral in. So that’s what I’m working on right now, like having access to care again, and I feel like sometimes because I’m younger I get dismissed and also I’m a positive person, so I won’t come at you like super rude. But I’m pretty firm and I don’t know, I think I feel like I found my voice. I found my voice a lot, and I just try to use it to help myself and then help others with it as well.
[00:17:32] Brenda Nelson: That’s awesome. That’s awesome because I’ve heard that word and I’ve, like, I, you sort of, in nursing when we hear that, we’re just trying to make them comfortable, have their best life as long as they can. But you were saying something about the energy level. I was a just go. Before getting diagnosed, I had Covid for the first time and my husband had it and it knocked him out. I was mopping, disinfecting, going in the backyard to get sunshine. And so when they told me that my liver enzymes were lightly elevated in the hospital, that’s why they ran the, they were gonna see if it was gallbladder issues, but they saw the tumors on my liver. We were like, well, I just had Covid. So, and we didn’t think it was a big deal. But they went from slightly to-
[00:18:27] Ashley Fernandez: Multiplied.
[00:18:28] Brenda Nelson: Yes. Very quickly. So, I think that’s hard for people to understand your energy level when they’re used to seeing you go, work. And then now you’re at a point where you have to decide, do I want to go to the grocery store or do I just order online because it’s going to take all my energy.
[00:18:50] Ashley Fernandez: I ride in those little carts and I get the craziest looks.
[00:18:54] Brenda Nelson: Really?
[00:18:55] Ashley Fernandez: Yeah. Like I ride in those little, I ride-
[00:18:57] Brenda Nelson: I have somebody go with me just to stand by me while I’m pushing. Once it gets too heavy, I’m like, okay, it’s yours, I can’t push it anymore. But yeah, it’s having people understand that we’re making it. We got a good report last time, but-
[00:19:14] Ashley Fernandez: Yes you did.
[00:19:15] Brenda Nelson: We’re still tired, we’re still, we are still dealing with a chronic illness and we hope that it stays chronic, but we have to take care of ourselves and really decide-
[00:19:29] Ashley Fernandez: Yeah
[00:19:29] Brenda Nelson: how use our energy. So it’s really interesting to hear that from-
[00:19:34] Ashley Fernandez: If you ever decide for palliative care, they have resources for you. There’s different things that you can do, and there’s medication. I’m not one for medication, but I finally just said, okay, hook me up please. So I take like, an upper and it gives me energy, just enough. So it’s like a low dose, like five milligrams. It gives me enough to get me through the day with my daughter. So I’ll take my first dose at 8:00 AM and that gives me a pretty good dose until I pick her up at two.
And that gets me all the way until bedtime. And it’s really nice because before, I was kinda like a couch potato mom and I really want to be interactive. I want to be hands-on, like I want her to remember me, for me, not just. Like, as you said you have children too. Like how are they doing with this? Because my little girl is struggling right now with our recent move. How is, how are your kids doing?
[00:20:27] Brenda Nelson: So my son that still is with us at home, I think it hit him the hardest because he had to see me lose my hair. I got very thin. Talk about a couch potato, you pretty much. I still work, so I worked on my laptop while vegged out. But he threw himself. We had just moved to the community, so we didn’t know anybody except for my husband had a cousin that was a godsend. because she set up the meals. The people from his school all volunteered to come pick him up or drop him off while we went to treatment or while my husband was working, it was amazing to watch.
I just felt like God’s hand was all over it. We didn’t know the people dropping off our meals. I had never met them, but they were consistent in bringing those meals to us. And I had an aunt and uncle that came and stayed with us and one of our trips to go get treatment, they hospitalized me. As you’re saying, we’re like waiting for those labs to see if we can get the treatment.
[00:21:35] Ashley Fernandez: Yes. Every day. Yeah. You have to make sure that your counts are good. Yeah. There’s so much that goes into it that I don’t think people understand.
[00:21:42] Brenda Nelson: You have to go see if your labs are good, and then you have to wait on those, so that’s a high anxiety date because even when you feel good, you’re wondering, you know, are these labs going to be good.
[00:21:57] Ashley Fernandez: They call is scanxiety: it’s like where you know you’re getting testing, so your body’s oh, don’t freak out, but you’re still kind of freaking out and you’re like, why are you freaking out? You know what’s gonna happen, you’re just gonna sit there. You’re gonna get this thing, it should be done. I still get those. I just had scans three weeks ago and I was like, oh my God. Come on. You’re calm. You’re the ocean, waves. Relax.
Yeah, I freaked out. And then you’re waiting like the three days or two days for someone to read the report or sometimes it hits my chart before the doctor calls you. And I don’t know about you, but I do not like opening MyChart. I do not like to see that report. I just wait for that phone call and then it’s like, oh, okay and then I’ll go and I’ll read the specifics. But for me, like I’m not doing it without like that forewarning personally, but I have some really good friends-
[00:22:48] Brenda Nelson: Right. I haven’t looked at any of the results of the scans. I will go look at labs now, but the scans, I’m still not brave enough to go and open them because I’m scared I’m gonna see something that they didn’t see or who knows what I’m, my fear is, but I’m like, no. So sometimes I’ll tell my husband read that or, so he does. I won’t tell my daughter because my daughter will.
[00:23:14] Ashley Fernandez: So I’m like, your daughter. So when I was diagnosed, I went on every single platform. I did so much research. I stood up and I read so, so much and I learned so much about these terms, that terms, what’s this? What’s that? So then I went to the doctor and I had like stacks of questions, right? And it was like so much. I shouldn’t. I overdid it, but at the same time I was like, knowledge is power. I was like, how much power do you need?
[00:23:39] Brenda Nelson: I was opposite. I didn’t want to know. I just said, I don’t want anybody to tell me that I have a certain amount of time. I am not gonna look up. I told all my kids, do not. A lot of these people are diagnosed with this, are much older than I am. I got diagnosed at 50. I’m not a statistic. I’m a child of the most high God, and we’re just gonna trust him.
[00:24:06] Ashley Fernandez: That’s true. We’re a statistic of one, so we don’t fall into like that whole thing. Plus, I’m glad you said that about statistics.
[00:24:13] Brenda Nelson: That’s right.
[00:24:13] Ashley Fernandez: Can we talk about more research for like our demographic, like the Hispanic community is so diverse?
[00:24:21] Brenda Nelson: I think I find a lot of people are real uncomfortable when you talk about it in the Hispanic community because they, I don’t know if it’s like breast cancer is, the numbers are climbing up for our community and so we don’t have a lot of people that are used to the conversation. Like some of my Caucasian friends that they have, they’ve already been affected by it. They have a sibling that has it. But I think there’s a lot of, first in the Hispanic community.
[00:24:52] Ashley Fernandez: It also used to be taboo. You didn’t used to discuss your problems with the outside world. Like the fact that I go on social media was kind of like, why are you telling everybody your business? But it’s like, hey, I want to educate. But for us it was a little taboo. I told you I was the first one and it was a shocker. Hard conversations, but also I was hey, don’t cry because I know that I’m gonna be good. I don’t how, but I just have this feeling that I’m goint to be well. You know, we had this big party for five and it was like, yeah, like I made it every year we celebrate because it’s like, it’s like another birthday for me. You want to bring me a present? Why not?
No, but I’m definitely going to have a cake. My favorite are snow cones, like, I don’t know about you, but I don’t really have taste buds. They don’t work anymore. Food doesn’t taste the same, so I just like sweet and salty. As long as we have sweet and salty at my celebration, I’m winning. But now that I made this five year mark, I’m like, okay, God, what else can I do? Like what else are we gonna be able to do? How else can I help? How else can I use my voice to change? How can I help like our community, how can I help people with us? So that’s really cool that we get to do this today.
[00:26:06] Brenda Nelson: Yes, I think sharing your story is incredible because I didn’t really know people with breast cancer and I’d moved to a new community and as you were saying, you know, it’s hard. How much do you share? Because I really don’t know a whole lot about, it’s almost like you meet people, but nobody has your exact diagnosis and your makeup, so you’re listening to other stories for hope. And then there’s so many different types of breast cancer, so many types that I never knew about as a nurse.
Everybody, you hear somebody say they had breast cancer, you just thought, oh, it’s breast cancer. But when they told me, I was like, okay, when am I gonna have my surgery? I’m ready. I’m ready for surgery. And they were like, “Oh there’s not going to be any surgery.” Your breast cancer has already metastasized. We don’t see any-
[00:27:00] Ashley Fernandez: Did that hurt your heart? Because that kind of stung my heart, like, it was what do you mean I don’t qualify? Like, why wouldn’t we just take them off? Like if they’re in there and something’s bothering me, like why not?
[00:27:11] Brenda Nelson: Please take them. Yeah. It did. It was hard. It was hard because I was; It’s almost, it’s just another reality that it’s metastatic breast cancer.
And you know, we’re for a long time though, we’re living 21 day increments. And so, for a long time yes. But you were asking about my kids. So, my son, I think threw himself in school, in sports, everything. It was really hard on my son that was going to school in Indiana because he wasn’t here and he wanted to be here to help and he couldn’t be.
And then my daughter had just got married, was a teacher. But the Lord is good because her, she knew it was gonna be her last year to teach in Minnesota. So she did substitute teaching at the school that she was at. They just told her, you know, show up every day, we’ll put you somewhere. So even though it was full-time, she was able to come and be with me whenever she needed to be. She wasn’t, you know, strapped down to a job. So, it was like those things, I could just see how the Lord was already working ahead of us.
[00:28:21] Adam Walker: Your stories are amazing. I did want to make sure we caught kind of the last question here, kind of about that whole moving, making friends, you know, trying to get connections to new people and in the midst of kind of all of the stuff. Could you talk a little bit about that?
[00:28:37] Ashley Fernandez: Yeah. So moving for us so this year, I’m gonna be completely honest. As I said before, my husband Carlos is in the Air Force, so we move every three to four years. This last move, well the move before this was from Alaska.
From Alaska to Ohio and I got to move to Ohio because we did a move called a humanitarian, which meant it would put us closer to our family. So we were only five hours from Chicago, which is where my whole family is. And this last move was heartbreaking. It was actually really hard. It just happened like end of December and they moved us to North Carolina. It’s been an adjustment because we were really rooted in Ohio. Not only were we rooted, we were five hours from home. So if we needed anything, like my daughter got to be around her cousins for the first time, and you know, she was there for four years, so she really got to form those bonds and then we kind of took her away from that and it’s been a struggle.
As far as meeting new people, we’re in an Air Force base, so people are kind, but it’s hard to make genuine friends because. Do you tell them like, oh, hey, yeah, I have this? Usually I just say, oh yeah, so I’m living, I get treatment every 21 days. And they’re like, “Oh, okay.” And then once I feel them out, I can be a little bit more honest.
But most of the time when people find that it’s stage four, they’re kind of weird. They’re so kind. You’re just not getting those invites anymore. So I just try to be really like just use my discernment and be like, “Hey, is this like a safe person to tell everything to? Should I not?” But also if you Google me or if you even try to like look at my Instagram, my Facebook, anything, you can see what I’m living with and what I do.
And so it’s just a matter of like whatever they decide to do with it. But for the most part, I’m just me. And I just try my best to be kind and be honest. But I’m also not gonna like, dim my own light just for somebody to like me.
[00:30:31] Brenda Nelson: I think that’s been, that’s interesting, Ashley, because I have struggled with I would, I’ve always done Facebook, Instagram, I’d even just given my my dog her own Instagram because she’s so cute. It’s like, I’m like struggling with how much do I share because I felt like people were like waiting for me to die because you have stage four. And so it was like, “How much do I share? How much do I not share?” And finally I just did a caring bridge and put my story on there so that way it wasn’t in front of people who didn’t want to see it or couldn’t handle the emotion of ” O h, I’m good for 21 days.” Yeah. So, but that’s awesome that you’re sharing yours. I know that earlier this this past week I was, or this past week, I was like, man, I wish I would’ve recorded. because you just don’t. You’re so sick. You’re so weak. I have hair falling out in my food, waking up with my pillow covered in hair or shampooing and you just have hair. That’s ’cause I like cut it really short. Then going to a completely bald head. I wish I would’ve documented more of that. But-
[00:31:52] Ashley Fernandez: I have the same wish. I have the same wish. I wish I would’ve documented more. So then I can show people like, look how far I’ve came. Like there’s this, like, I have pictures and stuff, but I wish I would’ve did more of like a blog. Yes, A blog. I think they’re called blogs, blog.
[00:32:07] Brenda Nelson: Yes. Yeah. So, my husband took a few pictures, but it would be me all it crazy in the bed.
[00:32:19] Ashley Fernandez: Yeah, I do feel that social media connects us though, so even though I haven’t been able to meet friends like locally, I have a big support system online due to like the metastatic breast cancer groups and just like different conferences that I attend. If you ever want to get into any of that, Brenda, keep my messages and we can find something together.
Yeah, the conferences I attend and just the support groups, the advocacy work I do like going to DC and walking. Like all those things. I’ve met some really amazing friends. The heartache with that is, is that they pass away because they’re living with the same thing as us, right? But for some people that can be really hard for me, it’s just another reason why we need to like continue to work for change. We need to continue to ally and use our voice for the voiceless. But those connections are life changing and they make me feel connected to something more. And not only that, it’s like people that get it right, like I understand what you’re saying about your hair.
I can talk to my mom and my best friends about that. And they’re empathetic and they understand and they hold space for me, but they don’t get it. They want to get, but they just don’t. So I think that’s why those relationships mean so much more. And they’re so empowering because I’m in a new state, but I don’t feel alone. Even though I haven’t connected with people where I’m living, I still feel okay, like I’m not lonely. I’m okay. And that’s really beautiful to know that no matter where you’re at, you have common ground with somebody and not just somebody as anybody, like, I’ve met different Hispanics there, I’ve learned different things. And it’s really nice because you’re able to walk alongside someone. Like you’re able to like take newly diagnosed people. Like if I would’ve known you or met you online, like I would’ve just been checking in on you and making sure that you’re okay and that you know you’re not alone. Because in this community, no one is ever alone.
If you want to be found, like please reach out, somebody wants to walk this with you, we’re not just like, “oh, hey, we’re the advocates and you’re not” like, no. We want to make sure that you have everything you need to be successful through this. And if you want somebody to cry to, like who better to cry to than somebody that’s been there that’s already cried, possibly, or has worked through it, prayed through it, anything. And I think that’s the beautiful thing about the metastatic breast cancer community. Like yeah, we’re going through like this horrible disease, but there’s so much beauty in it because of how we just protect each other and lift each other and just rally against one another.
[00:34:54] Adam Walker: And that’s a beautiful thought and probably a good way for us to finish this conversation.
The, just listening to your dialogue and your experiences has been been humbling and also encouraging. And I just, I really can’t thank you enough for joining us on the show today and just sharing your lives with us.
[00:35:11] Brenda Nelson: Thank you for having us.
[00:35:12] Ashley Fernandez: Thank you for having us, Adam.
[00:35:17] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.Komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter at AJWalker or on my blog adamjwalker.com.