[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
[00:00:16] Welcome to the Komen Health Equity Revolution series on Real Pink, where patients, advocates, researchers, and community partners come together to talk honestly and openly that’s standing in the way of breast health equity and what we’re going to do to change it. I’m your host, Adam Walker. Let’s get into it.
[00:00:33] June is Pride Month, a time to celebrate identity, community, and the courage it takes to live authentically. Today’s conversation sits right at the heart of that because advocating for yourself, knowing your body, and refusing to be dismissed, that’s not just a health message, that’s a love letter to who you are.
[00:00:53] My guest today is Shelby Smith. She was 30 years old when she noticed something felt off. No family history of breast cancer, young, healthy, going about her life as a wife and mom of a seven-year-old daughter. But she trusted herself, and that decision changed everything. Shelby faced a 12-centimeter tumor, a bilateral mastectomy, 16 rounds of chemo, and 15 rounds of radiation.
[00:01:20] She did her research, built her own notebook, asked her own questions, and came out on the other side with a message that she wants every young woman to hear: know your normal, and when something doesn’t feel right, advocate for yourself. Shelby, welcome to the show.
[00:01:36] Shelby Smith: Thank you so much, Adam, for having me. I’m excited to be here.
[00:01:40] Adam Walker: Me too. I, I- this is such an important message and we talk about it from time to time and… but I really love when we can, like, really focus on it for a moment. Because that, that, the concept of knowing your normal’s just so critical, and I think your story showcases that really well for us.
[00:01:56] So, so set the scene for us about how you came to be diagnosed. Like, what was life like? What made you pay attention to what your body was telling you, and what happened when you did?
[00:02:07] Shelby Smith: Yeah. Thank you so much for that. I think, like you said, it’s really important to know your normal, and I don’t think you really know your normal until something’s off.
[00:02:14] So that’s why it’s so important- Yeah … to pay attention when something’s off.
[00:02:17] Well, let’s see, setting the scene. It was June of last year, so June of 2025, and life was completely different. In full transparency, my wife and myself were starting some family planning conversations. We had just recently chatted with some fertility doctors and talking about all the things.
[00:02:38] We were… My wife plays professional women’s tackle football for the St. Louis Slam, and we were about to head to the championship in Canton, Ohio. Our daughter’s getting ready to start second grade. Like it’s a good time. It’s a good time. Yeah. Let’s see. Actually, no, corre- correcting that. It was June, around the time when I thought something was up.
[00:02:55] July when we actually- Yeah … found something. So right around that time July, we had just drove to Texas on a huge family road trip with my sisters and hung out with my dad, did all the things. It was great. And then we got back, and it wasn’t uncommon more recently, I would say within the last year or two, that I experienced some pain during my menstrual cycle, just in my breast area.
[00:03:18] And because it was just so uncomfortable, asked my wife, like, “Hey, can I have a massage?” And that just kind of became our routine anytime it was happening. And we were just sitting on the couch. It’s about that time, so I’m getting a massage, and I’m not thinking anything of it. And all of a sudden my wife is like, “Can I talk to you?”
[00:03:35] And I’m like, “Yeah,” like, “like, what’s up?” Like, “We’re just watching TV.”
[00:03:39] Adam Walker: Yeah.
[00:03:39] Shelby Smith: And my wife is like, ” this doesn’t feel right. Like, in all the times you’ve asked me to do this, I’ve never felt anything like this.” And so I’m like- Wow … “Okay.” So I checked myself, and I’m like- no, that that doesn’t feel right.
[00:03:54] Yeah. And so at that point, we’re like, “Could it?” And I’m like, “No.” But everyone talks to you about how to check yourself, but not exactly what it feels like. To me, and I know that it sounds joking, mine felt like an AirPod case that was, like, embedded in my chest. And so I’m like, ” And so from there, that’s when we kind of started to say, like, “Okay we probably need to get this checked out.”
[00:04:16] Adam Walker: Yeah. Wow and so glad that you did. I mean, that’s like- Yes. I think in all of the interviews I’ve done, you might be the first one whose spouse, like, found something, like, that’s- I know … really fascinating. Yeah. Okay. Wow.
[00:04:32] Shelby Smith: I’m very shocked about it. I’m like
[00:04:33] how?
[00:04:33] Adam Walker: So, so all right, so, so walk us through the diagnosis, right?
[00:04:37] Yeah. I mean, what was that experience like for you?
[00:04:39] Shelby Smith: Yeah. Horrible. Horrible in the sense that I almost didn’t do it. So once I felt something, I was like, “Okay what am I going to do from here?” and so I just jumped in. I have Kaiser, and so I jumped into my app and I was like, “Hey,” messaged my PCP, “I think something’s going on.”
[00:04:58] She’s like, “You need to call this number.” Call the number, there’s an hour and 15 minute wait to speak to somebody. And I was like- I’m not doing this. Like, we don’t have a family history, like I’m not. Yeah. But intuition and knowing your normal, right? And so I did, I hung up the phone, and I went to bed that night, and I just felt this sense.
[00:05:20] My mother passed on in 2012-
[00:05:22] And I felt like she was talking to me. She’s like, “No you need to do the thing.” Yeah. I end up calling back the next morning. We get something scheduled, but it’s way later. It’s like a month later. Yeah. I am a naturally anxious person and so I was like, “That doesn’t work for me.”
[00:05:36] And so I just kept scrolling the app looking for another appointment and happened to be able to get one, like, later on that night, like the next day. Wow. And so I … I know. I was very fortunate. Like, it worked out at least from that hour 15 minutes. And so I went to see, who at the time was not my PCP, it was my wife’s PCP.
[00:05:54] Yeah. And my wife had a great experience, so I was like, “Why not? She’s available.” And she felt it, and she was like, ” it’s movable. You don’t have a history, but let’s still get it checked out anyways.” And I just I made sure to tell her thank you in that moment because had we not in that moment, like had she been like, ” no, you’re probably fine.”
[00:06:16] So she scheduled me for a mammogram. She referred it out. She was like, “I want to let you know that right now,” and at this point, like I said, it, we’re in July, she’s like, “I want to let you know right now, Kaiser in itself is booking out into January, so we’re going to refer you to Envision Sally Jobe.”
[00:06:32] And I went, “Okay, great.” So they call me, they get me scheduled. My … I think that was early August, maybe August 8th, that I went in for my mammogram, and I’ve never obviously had one before. I’m 30. It’s not even time- based on what they recommend.
[00:06:46] Adam Walker: Yeah. Yeah. And I’m in there, and they’re like, “We’re going to take pictures, then you wait in this room.
[00:06:51] Shelby Smith: We show them to the doctor, and then if everything if they don’t need to see anything else, we’ll send you for your ultrasound,” because she wanted both.
[00:06:59] I’m like, “Okay, cool. Yeah, no problem.” Yeah. So we take the pictures and I’m just like kinda joking. My wife and my middle sister are out in the waiting room, and I’m just kinda joking.
[00:07:08] I’m like, ” that’s not as bad as people said it was.” Like, whatever. And they take … So I’m waiting after they take the pictures, and then they come back in the room and they’re like, “Hey, so the doctor wants more images.”
[00:07:21] And at that moment I was like, “Okay.”
[00:07:24] Adam Walker: Yeah. Yeah.
[00:07:25] Shelby Smith: So they take the images, and then they send me into the ultrasound room afterwards.
[00:07:30] And now I’m n- nervous. Like, I was already nervous. Yeah. Now I’m like, “Ugh.” and so we go into the ultrasound room, and at first … And you can’t have anybody with you in the ultrasound room. They come in afterwards when they want to talk to you- about the results. And so the tech is kinda like laughing and joking with me, and she’s like, “So tell me about what you’re feeling.”
[00:07:50] I’m like, “Well, I feel like this is like my little AirPod case.” And she’s like, “Oh, haha.” And so she puts the thing the little machine on me- And she’s like quiet
[00:08:00] And so now my heart is really… And she’s just like taking picture after picture. Then she moves to this one. It’s like picture.
[00:08:05] Adam Walker: Yeah.
[00:08:06] Shelby Smith: And then they just leave you. And in that moment, even though we didn’t know, I knew because it was just like a s- And I knew that she didn’t even try to, but I knew whatever she saw, Yeah … I was like, it wa- it was pretty bad. So they got my wife. I was, And then they came in, and the doctor’s like, “Calcifications are normal.
[00:08:25] People have calcifications all the time. However, yours are in a pattern that mimic breast cancer.” And I’m like… I was like, “What else could it possibly be?” Like, and my wife asked the same, and they were like, “Two other things, but those are more rare.” Wow. So in that moment, I just remember feeling weak all over my body, and they were incredibly attentive.
[00:08:46] Like, they weren’t just passing. Then they were like, “So next steps are we’re going to send you into a room. You’re going to schedule a biopsy. We need to look at it.”
[00:08:52] So then Tuesday, boom, do the biopsy. I remember literally crying in one of the nurse’s arms because I was so afraid. Yeah. And she just said- Yeah
[00:09:00] ” No matter what happens, you’re going to be okay.”
[00:09:03] And I didn’t feel that at the time. So that was August 12th. And then August 14th, got the call. Actually, before I got the call, unfortunately, as it always does, “You have new results.”
[00:09:16] Yeah. And just to show you how naive I was at the time and just all of the things, I’m reading it, and I just never had any experience with cancer.
[00:09:28] My wife is over my shoulder, and it’s like something ductal carcinoma in situ and duh. And I’m like And so my wife’s looking at me, and I’m like, “What is carcinoma?” My wife’s like, “Baby, that’s cancer.” And I’m like . And so I just remember, like, shaking, and then I called my sisters, and they s- the scream that they said I let out was nothing that they will ever forget.
[00:09:53] And after that, the calls start coming in and-
[00:09:56] Adam Walker: Yeah ..
[00:09:57] Shelby Smith: And then they never stop.
[00:09:59] Adam Walker: Yeah.
[00:09:59] Shelby Smith: Yeah.
[00:10:00] Adam Walker: And the appointments, I’d imagine as well.
[00:10:02] Shelby Smith: Oh my goodness. Yeah. I had so many appointments. Yeah. Yeah. Well,
[00:10:07] Adam Walker: well and w- and we’ll certainly get into that too. But- Yeah … but first I know y- I know you did a lot of your own research to prepare yourself, and so- Yes … I want to hear a little bit about that. Like, why did you feel the need to do that research? And what did it teach you about sort of how patients need to approach the medic- the medical system in general?
[00:10:27] Shelby Smith: Yeah, absolutely. Naturally, as a person, I am a planner. Yeah. That’s setting- Okay.
[00:10:34] Adam Walker: All right ..
[00:10:34] Shelby Smith: Like, I am the one that keeps a running list of everything we need when we travel, and I just update it every time we travel. Or-
[00:10:40] Adam Walker: Nice.
[00:10:41] Shelby Smith: Like, our totes are numbered downstairs by what they’re in. So, like, that is all…
[00:10:45] A plan- being a planner is already me. Because we didn’t have any experience with it whatsoever, nobody in my family has had it, I’m curious. I want to know everything, and they just call, and they start… They’re like, “Oh, oncotype and this and in situ,” and I’m like- I recognize for you all, this is your every day.
[00:11:04] Adam Walker: Yeah.
[00:11:04] Shelby Smith: Yeah. But this, like I have no clue what you’re talking about. It’s like a whole new language.
[00:11:08] It was like you’re speaking to me- Yeah … it reminds me of in Finding Nemo when Marlin’s like, “You’re really cute, but I don’t understand what you’re saying.” He’s like, “What are you talking about?”
[00:11:18] And so I just remember feeling-
[00:11:20] Oh, I just had a notebook at first like a sketchbook, and I would just take down everything, Yeah … that they were saying, and then I would like look it up, and I would ask questions and all of the things. And so for me, in order to be able to ask the questions that I needed to ask and everything, I needed to know what was happening, and everyone just- I asked, they would tell me, but then like you get off the phone, and now I have six more questions.
[00:11:42] Adam Walker: Yep.
[00:11:42] Shelby Smith: And so I was like, I just need to sit down and really understand what is happening to me. And I didn’t- I wouldn’t say I reached that point until like a week after my diagnosis. At first, I was just in utter shock.
[00:11:53] Yeah. And so I was happy, because it was myself taking notes, my wife, and my middle sister or my older sister, depending on who could make it to the appointments. And so then I was like, you know what? No, I need… Like this isn’t, I’m not just going to let this happen to me. Like, I need some control in this situation.
[00:12:06] And so I started looking, like okay, what is mine? What is this? Like, what is my staging? Why is staging so complicated? And it was at that point when I started to do my own research that I actually realized they were not giving me the full picture, and that was a big struggle for me because again, this is their every day.
[00:12:23] And so-
[00:12:24] Adam Walker: Yeah. One thing I will say is like my surgeon was very thorough, but as I got to my oncologist and my radiation oncologist, my own research was extremely important because it informed the questions. And then they’d be like, “Oh, yeah, that.” And I’m like, “What?”
[00:12:38] Well, so I’m just curious, like when you say they, they weren’t giving you the full picture, like do you…
[00:12:43] Was that because they could see the full picture, and they were just sort of spitting out the things that they thought you needed to know, or were they intentionally not, like o- obfuscating the full pic- Like, like how… Like tell me more about that. That’s a great question. The best way that I can describe it is that I feel as though, again, it’s their every day- Right
[00:13:01] Shelby Smith: and so they talk to so many people, and so they’re just running through it. And I recognize that, one, most people are in shock when they find things out. Yeah. But two, some people don’t want to know everything, or three- I can’t help but feel like a number kind of in the health system- Yeah … as much as I hate to say that.
[00:13:22] And the reason I say that is because, like, with my surgeon, he talked to me about everything. He said, “You are young, so I’m not your oncologist. This is what I’m going to talk to you about.” He’s like, “We’re going to, based on everything we’ve seen, we’re going to do surgery first.”
[00:13:34] And he was like, “And because you’re young and because of the size of your tumor, I can almost guarantee you they’re throwing the kitchen sink at you.”
[00:13:40] He was like, “You probably will have chemo and radiation.” He was like, “I’ll be grateful if I’m wrong-”
[00:13:45] Adam Walker: Yeah “…
[00:13:45] Shelby Smith: but I’m probably not.”
[00:13:47] And he, even though our appointments were, we scheduled for, like, 30 minutes, he had no problem sitting down for an hour- wow … Talking through about everything he understood- Yeah
[00:13:57] talking to me about the risks, because I actually did the bilateral mastectomy, and I also had my lymph nodes removed later, and he was kind enough to tell you. He was like, he’d tell me, he was like, “I don’t even know that this will be the industry standard in five years. Here are some- of the risks. Do you still want to do this?”
[00:14:11] His level of care, phenomenal. Wow. But when I got to chemo-
[00:14:16] Adam Walker: Yeah. You’re just, they’re just running you through a system, right?
[00:14:20] Shelby Smith: There was a point- Yeah … where because I was on the ACT, and so you get the first two, and it’s, like, the one they traditionally call, like, the red devil and all of the things.
[00:14:28] Yeah.
[00:14:29] Adam Walker: Yeah.
[00:14:29] Shelby Smith: And I didn’t even know that I was receiving my lifetime dose of it. So I went into… So that’s just something I happened to see, like, when I was trying to get ready to prepare, because they don’t give you a list. That’s one thing I will say. For your mastectomy, for your chemo, for your radiation, nobody’s like, “Here are some things that you want.”
[00:14:46] That never happened to me.
[00:14:47] And so I went online and was like, “What do I need? Am I going to be able to go up the stairs? Can it get wet? Can I do this? What do I eat?” All of the things- Yeah … which kinda continued my research just beyond knowing what’s happening to me, but it’s like, how do I prepare to be successful after this surgery and after this chemo?
[00:15:04] And that’s where I learned so much. And so when I got to chemo, and I’m just, like, looking on Reddit and TikTok and some Facebook communities, that’s where they were like, ” if you’re doing the four doses, like, that’s your lifetime dose.” And I’m like, “Surely these people that aren’t doctors are wrong, and they’re…”
[00:15:19] And I get to my oncologist. I’m like, “Is this the most I can ever have in my life, like, if it came back?” She’s like, “Yeah, no, you can never have this again.” And I’m like-
[00:15:26] Adam Walker: Huh. Okay … “
[00:15:28] Shelby Smith: Hey, so did you want to tell me?” That’s good to know. And there were specific things, like eating ice chips to stop the mouth sores and the cold packs- that you put on to stop the neuropathy.
[00:15:38] Adam Walker: Yeah. Un-
[00:15:41] Shelby Smith: None of that was told to me in advance. And it was really funny because when one of my nurses came over, my wife’s getting me ready for one of my sessions, and I have the ice packs on my hand and my feet and the gloves, and I’m eating the ice chips.
[00:15:51] She’s like, “Oh, I can always tell when somebody’s a Googler.” And I was like, “What?” And she was just like, “You have all the things. I mean, they work, but I can always tell because they’re usually the ones that are prepared.” Yeah. And I’m like, “Yeah.” Yeah. “Well, it would’ve been nice to know this in advance.”
[00:16:03] Adam Walker: Yeah.
[00:16:04] Being prepared is probably a good thing. Feels good to be prepared, so yeah. Okay. All right.
[00:16:08] Shelby Smith: Yeah. So- So that just really- Yeah … that’s a long way to say, like, to me along the way, I kept finding things that what I wasn’t being told. For example, one of the medicines to stop my nausea is also an antipsychotic.
[00:16:20] You can imagine my shock when I Googled because I’m just like, “Why does this make me feel this way?” Well, lo and behold. And so there were just a lot of things that I felt- You know, they were just like, “Do this because we said so, and that’s the standard.” And I’m like, I might still do it, but it would be nice to know-
[00:16:38] Adam Walker: Context, right?
[00:16:38] Yes. Having the context is nice, right? For
[00:16:40] Shelby Smith: sure.
[00:16:40] Adam Walker: Yeah.
[00:16:40] Shelby Smith: Yes.
[00:16:41] Adam Walker: Yeah. No I totally understand that. Wow. I… That, that’s an interesting perspective. And a- again I don’t know that’s one that anyone’s really shared before, so I appreciate you kind of sharing that.
[00:16:50] Shelby Smith: Thank you.
[00:16:51] Adam Walker: I mean and it really speaks to, like, why advocating for yourself is still…
[00:16:55] I mean, like, even within the context of speaking with the medical pro- Like, tell me more about this. What are the side effects? What are the other use… Like those- Yeah … that kind of advocation, a- advocating for yourself is really important. Yeah.
[00:17:06] Shelby Smith: And it’s sad that you have to, right?
[00:17:08] Adam Walker: Yeah.
[00:17:09] Shelby Smith: I even remember being younger, in college, and I was leading, like, a summer orientation program, and the… Our director was like, “Just because you’re doing this all summer, this is still these kiddos’ and their parents’ first day.” Yep. “So you treat it like it’s their first day.” That’s right.
[00:17:22] Adam Walker: And I’m like- That’s right.
[00:17:22] Yeah.
[00:17:23] Shelby Smith: That’s great … I was 12 and then 18. Yeah. So why
[00:17:25] hasn’t… Why aren’t you handling me with the white gloves? Yeah. Because this is still my first diagnosis, whether I’m your 3,000th patient.
[00:17:33] Adam Walker: Yeah, and it’s still scary. It’s still hard. Yes. It’s still scary. Yeah. For sure. Now now you’re Black, you’re queer- I am
[00:17:40] and you’re young.
[00:17:41] Shelby Smith: I am. All three.
[00:17:42] Adam Walker: Did any of these parts of your identity shape how you were treated- Or how you had to advocate for yourself in at any point, like, a- at any point during your diagnosis or during your care?
[00:17:53] Shelby Smith: That’s hard to say- obviously because I don’t know about their other patients.
[00:17:57] A part of me wants to say I w- am very privileged in that it never felt like that.
[00:18:03] But I don’t know that the things that weren’t shared with me weren’t because- I’m young or I’m Black or I’m queer. I’ll never truly be able to say that. Yeah. I don’t want to assume that of those people, but unfortunately, when I think of healthcare specifically as it relates to Black and queer and young people- Maybe.
[00:18:22] What I will say is it never felt like that. Like, I never felt any different type of way specifically because I was Black. I think the young component came into play because there was always just… That was always the awkward situation of just like-
[00:18:36] Adam Walker: Almost like disbelief, right? Yeah.
[00:18:38] Shelby Smith: Like, when I- I can see the looks when I’m, like, walking in.
[00:18:40] The nurses definitely never said anything, or people would just kind of, like, to me directly- Yeah … or when, like, people pull up my chart when I’m calling and asking about the cost, they’re like, “Oh my goodness, you’re 30?” And I’m like, “Yep.” Like, “Thank you so much.”
[00:18:52] Adam Walker: It does happen, yes. I mean, like, I- It’s a lot
[00:18:55] you should be aware of this. It- Yes … it does happen, yeah.
[00:18:57] Shelby Smith: Here we are. Yeah. The one thing I will say is my specific type of breast cancer is hormone fed- and so very early on it was kinda like, like I said, we were family planning, and so I was like, ” I, I probably shouldn’t carry,” right? And they’re like, “I mean, you can, but…”
[00:19:16] And so we kinda made that decision early on, like I am blessed enough that there’s two wombs in my marriage. We’re not going to do that. And so as we were coming close to finishing chemo and talking about what comes after radiation, my oncologist is just like, naturally I assume, she’s like, “And then we got to talk about getting you pregnant.”
[00:19:31] I have never, outside of saying like I’m like, I’ve never shared, like, that those were my plans or that I still want it to continue. Like, it was very clear early- it wasn’t. I was like, “Huh?” And she was just like I thought you said you wanted to get pregnant.” I was like, “Oh, no, we’re just going to have my wife carry,” and my wife is very masculine presenting.
[00:19:48] And so she kinda goes- “Well, you,” and she points at my daughter who’s in the room, and she’s like, “Y- you carried her, right?” I’m like, “Yeah.” What? Like, what’s your point? It’s not what… Yeah. Like, so that is like definitely one of the times where I was just like, “What are you…” And she was like, “So like you know you could if, like there’s safe ways to do it.”
[00:20:07] And I’m like, “I do, and we’ve decided- Yeah … that it’s not worth that risk.” Like I’m blessed enough- Yeah … that I don’t, that’s, I don’t have to. Yeah, you..
[00:20:13] Adam Walker: You have other options, and that’s- Yes, and so-
[00:20:14] Shelby Smith: Yeah.
[00:20:15] Adam Walker: We’re going to choose that option. That’s that’s- The one that doesn’t put me at higher risk, and I think that was the one time, which is why I kind of tie back to like was that the reason I didn’t find out some of the things that I found out?
[00:20:27] Shelby Smith: Or just because like- or that they weren’t as slow with me because I wasn’t a 70 or 60-year-old woman? I’ll never know. Yeah. But that moment I was just well, that was an interesting take to say the least.
[00:20:39] Adam Walker: Maybe she was playing a bit of catch-up. Now you- Yeah
[00:20:42] mentioned your daughter. So she was seven when you were diagnosed. How did you and your wife decide to handle that conversation with her? How did you, and how did you both like hold space for her while you’re dealing with all of this yourself?
[00:20:57] Shelby Smith: Yeah. Ooh. One, thank you for therapy. So we are all in therapy.
[00:21:03] My wife and I are in couples therapy, we’re in individual therapy, and our daughter is in therapy as well.
[00:21:08] She is so emotionally intelligent, and that is both a blessing and a curse. Yeah.
[00:21:14] Adam Walker: And so-
[00:21:15] Shelby Smith: Yeah … we are very routine. Her and change have never been like the best of friends.
[00:21:20] And so when it came time for my biopsy and they told me they thought it was cancer, my sisters came and took her so my wife and I could process.
[00:21:29] That’s not, anytime Easton is going somewhere, Easton knows where she’s going. She knows a week in advance. She, so that just- Yeah. Put it-
[00:21:37] Adam Walker: That last minute was..
[00:21:38] Shelby Smith: Straight in the back and swoop, she’s like, “Eh, something’s wrong.” And she asked me. Yeah. So she’s like, “Something’s wrong with Mommy.”
[00:21:43] And so my wife and I when we were talking about it after we got the diagnosis, I said-
[00:21:50] How do I look at our baby and say these things? And I just remember feeling overcome with emotion.
[00:21:56] Adam Walker: Yeah.
[00:21:56] Shelby Smith: And she’s going into her first flag football season. She wants to be like mom, because my wife is mom and I’m mommy. Like, she… Like, all of the things, and so- Yeah … I’m like, on- I’m going to be on chemo.
[00:22:05] Am I going to be able to be there? Am I going to, like, what is school pickup? Like, everything about her little life is changing, too. I know that- this diagnosis happened to me, but it impacts everyone around me. And so we made the decision, we were like, ” we’re just going to tell her what we- Yeah … think is enough for her age, and then we’re going to let her lead.”
[00:22:24] And so we called her downstairs and I thought I was going to be the person to say it, but I definitely was not. I couldn’t even choke it out, so my wife ended up just sharing, like this is the diagnosis mommy got, and this is what we think is going to happen.” And I remember she looked at me.
[00:22:44] I’m sitting on the couch in the utmost, like, corner of the sectional. She’s in the middle, and my wife’s on the other side of the sectional. And she turns to me after looking at my wife, and she goes, “Mommy, is it the kind of cancer that goes away?”
[00:22:59] And at this point, I’ve just gotten a diagnosis.
[00:23:02] I don’t know staging, and I looked, I had to look back at her, and she’s like and she’s looking at me, and I’m like, “Baby, I- I don’t know.”
[00:23:11] Adam Walker: Yeah.
[00:23:11] Shelby Smith: And I- she starts crying, and I start crying, but it was like, “No matter what, like, you’re going to be okay.”
[00:23:17] She, “Okay.” and so then we just kinda let her lead throughout it.
[00:23:21] Like, she knew about chemo. She knew about the medicines, all within appropriate, like, she understood- yeah …
[00:23:26] the surgery component she knew. She’s seen my scars, and- she always asks. She’ll say, We told her to be gentle with me, because this is, of course, an emotional rollercoaster for me as well.
[00:23:38] So she’s always like, “Mommy, do you have the capacity for a question about your breast cancer?” And sometimes I’ll say no, and then my wife, Ariana, has just made themselves available consistently for just, like, “If you ever want to talk about it and it’s just me and you, Easton, we can talk about it.” Yeah.
[00:23:53] And so I think that’s really just- how we decided to do it, and I think when she looks back on this time in her life, she’ll just remember that she was included. Like, she was there when I rang the bell. She obviously can’t be there when I’m getting the chemo because she’s too young- yeah … but she-
[00:24:09] Adam Walker: Yeah.
[00:24:09] Shelby Smith: Hearing the machine, she hears me talk about it, and so I think for us it was a no-brainer to include her because then it would’ve just felt like life was happening around her.
[00:24:18] Adam Walker: Yeah.
[00:24:18] Shelby Smith: And-
[00:24:19] Adam Walker: Yep ..
[00:24:19] Shelby Smith: Why is mom feeding mommy in the bed? Why can’t mommy get out the bed? And we d- we would’ve rather her like, “This is what we’re talking about,” and she knew.
[00:24:27] Adam Walker: Yeah. Yeah. I th- I mean I think you made a good choice there, and she sounds like a very mature She is. She should be- … I guess seven-year-old at the time.
[00:24:35] Shelby Smith: Yeah. Yeah.
[00:24:36] Adam Walker: Yeah. Yeah.
[00:24:36] Shelby Smith: That’s- I’m like, “How do you, how are you, what are you?” And she does it. She never see… She is, was an angel throughout the process.
[00:24:43] I like that. That’s so good. I can’t ask for a better child, so.
[00:24:46] Adam Walker: That’s so good. Yeah. Now, talk to us about the losses be- beyond the physical. You’ve spoken about- grief, the like, ta- like talk about the expectations for your life your fertility, your body. Like, like what do you want people to understand about the parts of breast cancer of, I guess, of the breast cancer experience that don’t show up in medical charts?
[00:25:10] Shelby Smith: Ugh, so many, and I love that question because people just hear, like, cancer-free, which I’m fortunate that I am- and they think, okay, yeah, like, you’re good, right? First and foremost, I think the hardest one for me is because I’m hormone-driven, and so we always talked about the fact that I would carry.
[00:25:34] And in full transparency, my daughter is from a previous relationship that was incredibly toxic, and so I’ve always wondered what it would be like to carry for my wife, someone who I feel safe with and seen- Yeah … and have that… And not that carrying my daughter wasn’t beautiful, but I was young, and I was in college, and it was scary, and all the things.
[00:25:51] Adam Walker: Yeah.
[00:25:52] Shelby Smith: It’s like, what would it be like to carry a child softly? And I will never get that opportunity. And so that, that is like the hardest. Like, I even almost am at tears now just thinking about that because, like, seriously? And I’m blessed that I know what it’s like to. Like, I do have a child here that I got that experience, and I never want to take that for granted.
[00:26:14] But, like, that was always the plan, and so just feel- feeling what that was like. I think the loss of one of my favorite parts of my body. Like, I love my body and what it can do for me, and I loved my breast. And in an instant… Like, I didn’t even think about the bilateral mastectomy. I was like, “Get it out of me.”
[00:26:32] Like, I just went into… And then I remember waking up from the surgery, like, fully, and I walked to the bathroom and I’m like – They’re gone. And my wife was just like, ” And I was just like, and just like processing that and still learning to love and figure out what that’s like for me. And so I think the image of myself is really hard, like daily.
[00:26:55] Like I, every time… t- for me right now-
[00:26:59] When I’m getting dressed I’m just like, “Wow, this horrible thing happened to you. Are you okay?” Yeah. And so I think just the consistent reminder or the sharp pains or all of the things while you’re healing. Another component is because I decided to have my lymph nodes removed because some of them were positive-
[00:27:17] The risk of lymphedema-
[00:27:18] Adam Walker: Yeah …
[00:27:18] Shelby Smith: and never being able to travel. Like I hadn’t reached a point where I explored the world yet, wasn’t in a financial position to. So now knowing when I want to go out the country, that looks… I don’t just get to get up and go. Like I have to be incredibly cautious, I have to think about that flight, I have to do all the things.
[00:27:34] And then I think the consistent anxiety.
[00:27:38] Adam Walker: Yeah.
[00:27:38] Shelby Smith: I don’t have a family history, and never knowing where it came from or like how long was it in there, like that anxiety of just like, “What was that?” Forever- Yeah … for the rest of my life. And no, I don’t intend on letting it rule my life, but there are days when I’m just like, “What if…?”
[00:27:58] So I think those are all the things that don’t show up on the chart, it’s just like I’ll never do life the same way-
[00:28:04] Adam Walker: Yeah ..
[00:28:04] Shelby Smith: Again, for better and for worse- Yeah … if that makes sense.
[00:28:07] Adam Walker: Yeah. No, it makes a lot of sense. Yeah, app- I mean, I appreciate you… I think the way you phra- yeah, you, the way you phrased it, “I’ll never do life the same way again,” I think that’s a very poignant way, Yeah
[00:28:17] To phrase it and look at it. What, now what’s something you wish someone had told you before treatment started? Something that would’ve made you feel more prepared or maybe less alone.
[00:28:32] Shelby Smith: That’s a good question. I am very fortunate that the community behind me, I never really felt alone. I always…
[00:28:41] I was n- like I never went to a chemo appointment alone, I never… I think after I had my surgery, I was off work for like four or five weeks, so many people rallied around us that we ne- like my wife didn’t cook for a month. Like we had so many- doorDash gift cards and all of the things. And so alone, no, but when I think about something that I wish that I knew, I’ll do two because I recognize everybody doesn’t go through radiation.
[00:29:07] Yeah. But for people going through radiation, how horrible radiation is. Everybody just kept being like, “You got through chemo. Radiation is a breeze.” So I went in there, I was like, “Yeah, let’s go.” Oh my goodness, Adam. When I t- first off, you’re alone. No one can be in the room with you.
[00:29:25] Adam Walker: Yeah. The vulner- like obviously at chemo I’m not completely shirtless, so you’re, you’re- Yeah
[00:29:32] Shelby Smith: for me, shirtless on a table, arms up, and you’re holding your breath. For my situation I had to hold my breath for like 10 to 15 to 20 seconds at a time. They’re like, “Hold your breath,” and you just hear this loud zap.
[00:29:45] And you’re just there fighting for your life, and it’s only 15 minutes, but it is the most…
[00:29:50] And you… I went every day for two weeks. Wow. And so 20 minutes there, 15 minutes on the table, 20 minutes back, all the things, and it was just so… It… That is the most, the lowest I think I felt outside of being on what they refer to as the red devil.
[00:30:05] Adam Walker: Yeah.
[00:30:07] Shelby Smith: It was… I wish people hadn’t told me it was easy, and I recognize that was probably their experience.
[00:30:13] But for me- Yeah … the fatigue, I ended up developing esophagitis, and so I couldn’t swallow. It hurt just wh- It felt like burning. Even water burned, and so then there was a period where I couldn’t even eat without like putting pressure on my neck. And then my shirt just hurt whenever it would rub here.
[00:30:32] So that I would say I wish somebody had prepared me for what radiation could be like and all of the things. The team was phenomenal. They were so sweet. I also got the flu during, so it was just –
[00:30:43] Adam Walker: Oh.
[00:30:43] Shelby Smith: And they were like, “You got to keep coming.” And so like holding my breath with the flu-
[00:30:47] Adam Walker: Oh, no …
[00:30:48] Shelby Smith: it was a lot.
[00:30:49] So I wish somebody had prepared me for that. And then I think specifically speaking, and this is one thing that I don’t feel like my surgeon did a great job of, and that’s… Again, he did a great job of a lot of things, so I think he can have one mess-up. Yeah.
[00:31:02] Adam Walker: Yeah.
[00:31:02] Shelby Smith: I didn’t realize lymphedema was irreversible.
[00:31:06] I didn’t find that out until I went to physical therapy. So I’m getting like my sleeve and everything, and she was… I was just like… She was talking to me about the swelling, and she’s just like, ” if it does, like you need to let us know.” And I’m like, “And then I’m assuming you all like just take the fluid out.”
[00:31:22] She was like, “No.” She’s like, “There are some that can do it, but like if it starts and you let it go on, there is no undoing it.” And I’m like- I knew that this not might be the standard. I knew that I was at risk. I knew that like any swelling constitutes in the percentage, but I never knew-
[00:31:38] Adam Walker: Yeah
[00:31:39] Shelby Smith: once it started, like that’s what it is. Yeah. And so I wish that I had known that to feel, both of those things, to feel a little bit more prepared in my decisions. Yeah. And I might have still decided to ta- have my lymph nodes taken out, and I know I still would’ve decided to have radiation. Yeah. But for me the mental preparation, I went into chemo knowing it was going to suck, like everybody- Yeah.
[00:31:58] You see it on the movies. Like- Yeah … I knew it it didn’t make it any less hard, but I knew what to expect. But for those two, I was like, that I feel blindsided.
[00:32:07] Adam Walker: Yeah. Yeah. Yeah. That’s important to know. Yeah. Yeah.
[00:32:11] Now, you’ve, you recently finished radiation, I think on May 12th.
[00:32:16] Shelby Smith: Yes, I did …
[00:32:16] Adam Walker: what does it feel like to be on the the other side of active treatment, and what does moving forward mean to you at this moment?
[00:32:25] Shelby Smith: Another good question. I love all of these, because these are all things I’m just consistently thinking about.
[00:32:30] Adam Walker: Yeah.
[00:32:30] Shelby Smith: Yeah. Well, I now start my hormone blockers-
[00:32:37] And was actually faced with a difficult decision about another medicine that I’m deciding whether I’m going to take or not- because my oncologist dropped the ball on that one, and I didn’t really know about all the side effects.
[00:32:48] So emotionally I’m dealing with that.
[00:32:51] I know that I’m going to, I’m on a shot for Lupron that stops, like, my ovaries, and then another type of medicine to stop everything else, and I’ll be on that for the next seven years.
[00:33:01] Okay. But that versus having to be at an appointment every week is a little bit different. So that component- Yeah … I already knew in advance and was prepared for and that just kinda ties into the fertility, but I’m okay with that. I know it lowers my recurrence. But it feels good to tri- try to figure out what normal looks like for our family now-
[00:33:20] Adam Walker: Yeah.
[00:33:20] Shelby Smith: And what healing looks like now, and learning to deal with my body, and the medical menopause and all of the things. So that’s kind of where I’m at in this moment, and I think moving forward for me looks like taking my experience and spreading awareness.
[00:33:37] I decided shortly before I started chemotherapy that I was going to share my story, and have connected with so many amazing people, amazing warriors, and had videos fortunately go viral about, like, things that I used to prep and all the things, and I continue, I will continue to want to share that experience.
[00:33:56] Yeah. Like, I don’t want to be silent. Yeah. Like, there are things that I wish I knew, and I’m going to make sure other people do know them. Even if it’s just two people, I did what I needed to do. And truthfully, really just being so grateful that I’m on this side of things. I know that it could go a lot of ways, and I don’t plan on taking that for granted, just really living life and thinking about once you have something like this happen to you, everything else is just like, actually none of this matters, truthfully.
[00:34:25] Adam Walker: Yeah.
[00:34:25] Shelby Smith: And so I think really just continuing to enjoy life and taking a few steps back and being grateful that this is my story.
[00:34:33] Adam Walker: Yeah.
[00:34:33] Shelby Smith: And just prioritizing myself and my health consistently.
[00:34:39] Adam Walker: Yeah. That’s right. That’s right. That’s the way. That’s the way. All right, Shelby, last question for you. If there’s a young Black woman or a young queer woman that’s listening today someone that’s been maybe putting something off or who doesn’t think it can happen to her what do you want her to hear from you directly?
[00:34:59] Shelby Smith: Oof. What a, one, what a privilege to think that it can’t happen to you. But two, you don’t know until don’t think, “Oh, like I’m young, there’s this, like, I don’t drink alcohol, I work out all the time. Like why?” Why would it be me?” Or just like, “Eh, that’s probably nothing.” Do not rest until you know for sure, whether that means you have to advocate for yourself at the doctor even more, or what that looks like.
[00:35:32] The earlier you know, the more they can do for you.
[00:35:35] The more decisions you have about what happens to you. And in a situation where you feel like you have no control, having control over something is so important. And so what I would want- Anybody that even thinks something feels off is kind of what we’ve been saying is know you’re normal.
[00:35:53] Yeah. If you think it feels off, have it checked, and if it’s nothing, great. And having it checked isn’t just stopping at, like, a doctor’s like, ” I don’t think so.” Get the imaging done.
[00:36:02] Adam Walker: Yeah.
[00:36:02] Shelby Smith: There are so many things, like you can self-pay for mammograms if you want to, and there’s grants to help you do that.
[00:36:08] Research on that if you’re just… If somebody’s telling you no, find a different PCP if you can, if they are telling you no and not validating your concerns.
[00:36:16] Adam Walker: Yeah.
[00:36:16] Shelby Smith: And know your body. Take your body serious. Your body can do so many amazing things for you, and it’s going to tell you if something is off.
[00:36:25] Like, when I look back at how exhausted I always felt or just different things, I’m like, “Oh, that’s what that was.” Yeah. Don’t just write it off. Trust yourself. You’re in this body. You are your biggest advocate. Don’t take no for an answer, and get it checked. And if it’s nothing, great, and if it’s something, you’ve probably caught it early enough that it’ll be nothing pretty soon.
[00:36:46] Adam Walker: That’s great advice. That’s great advice. I love that.
[00:36:49] Shelby Smith: Thanks.
[00:36:49] Adam Walker: W- well, Shelby you’ve turned one of the hardest things a person can go through into something that you’re actively using to support others, and I love that. It takes the kind of courage that, that just doesn’t get named enough.
[00:37:03] So thank you for trusting us with your story and for showing up for every woman that’s going to hear it, and thank you so much for joining us on the show today.
[00:37:11] Shelby Smith: Thank you so much for having me. It’s been an honor, and really good questions, too.
[00:37:16] Adam Walker: Oh, we try. We try. And to our audience, if today’s conversation moved you, share it.
[00:37:22] Send it to a friend, a sister, a daughter, a partner, because the most powerful thing you can do after listening is to make sure someone else hears it, too. And here’s the call to action we’re sending you out with today: know you’re normal. Seriously, know it. Touch your body, pay attention to changes, and trust yourself when something feels off.
[00:37:43] If you’re younger than standard screening age or something concerns you, advocate for yourself, ask for the test, push if you have to. And if you’re at or past screening age and you’ve been putting off that mammogram, this is your sign. For resources, support, and information about breast health, visit komen.org/healthequity.
[00:38:04] If you or someone you love needs help navigating a diagnosis, our breast care helpline is available at 1-877-GO-KOMEN or email helpline@komen.org. This is Real Pink. I’m Adam Walker. Until next time.
[00:38:20] Shelby Smith: Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For
[00:38:24] Adam Walker: more episodes, visit realpink.komen.org, and for more on breast cancer, visit komen.org.
[00:38:29] 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.