[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. In today’s episode, we’re going to bust some myths, because young women can and do get breast cancer. While the average age at the time of a breast cancer diagnosis is 62, Jeanelle Adams and Maria Costa were both much, much younger when they were diagnosed. I’m excited to welcome both of you to the show to talk about going through a life altering experience in your thirties and the challenges and obstacles you both had in getting your medical providers to listen to your concerns and get something as simple as a mammogram.
Ladies, thank you for being here today. I know the paths you’ve been on have not been easy. And unfortunately, I think many listeners have had very similar experiences. So Jeanelle, let’s start with you. Tell us about your journey and your story.
[00:01:21] Jeanelle Adams: Okay, so my journey started honestly in 2020. To be honest, I started experiencing like symptoms on my left breast. So it was a rash and I went to my doctor. They said, “Oh, it’s just eczema.” But I’ve had eczema my entire life. I didn’t think it was eczema, but I did listen to them and I got some steroid shots and some steroid cream. Nothing was happening. My nipple still was like very heavy, deteriorating. It was itchy. It was just disgusting. It was nasty. And went back, went to a dermatologist. They told me, “Oh, it’s dermatitis. It’s this, that, and the third.” Took some cream for that. Nothing helped. And then I’m just like, okay, should I get like a mammogram or, something to this nature? And they were both like, “Oh, you’re just very young. It’s- you’re young. Don’t even worry about that. Let’s just, it’s probably like a milk dud.” But at the time my kid was seven. So I’m like, that’s impossible. I wasn’t breastfeeding her, so alright. But, doctors know more than we know, so eventually I was still on the cream, but eventually a couple, within that time, how doctors appointment go, it takes a while to get to them and everything to make sure that this cream is working, that cream is working. Nothing was working. A lump eventually grew. And then I went to my primary when I spoke to, I had a whole attitude of meltdown and I was speaking to the receptionist and she said, I’m just going to get you a referral to get a mammogram, the receptionist. So, I went to get a mammogram and got the ultrasound and the way the radiologist was just there talking to me, just like, “Make sure you go get this checked out, make sure.” And then it was like, they called and then the very next day I went to get a biopsy. That was a Friday. And then that Tuesday I was diagnosed, which was 15 months after my initial symptoms was going on. So it was, it’s more so I had a whole lot of things against me. I’m young, I’m black Hispanic from an urban area. I look a certain way and they believe, or I guess assumed that I didn’t know what I was talking about, or just… and that sucked. So it was like, so I have to be 50 to get a mammogram. What’s going on? I was diagnosed with stage 3 grade 3 triple negative breast cancer. The tumor was about 7.5. Initially, I went right into treatment. Not necessarily, I kind of pushed treatment back for a while, about a month. And then I started treatment in September. Did 23 rounds. But with the 23 rounds, my tumor shrunk, like it did shrink. I didn’t feel it anymore, it was, going very well.
Also did a clinical trial. Completed chemotherapy, which was, honestly, chemotherapy felt like death. I felt like I was never going to make it out. I never going through chemo, I didn’t make plans. Because I didn’t think that I don’t know if you went through that, but I didn’t think I just wanted to make it to the next day. The bathroom floor was my best friend. It was my best friend and it was like, trying to explain that to my husband. And then my daughter, her watching me go through that was like, physically me changing and then being sick and not being able to do a lot of things is hard for like my family, just me and everything in general. So, I completed chemo in February and then I got my surgery in March, which was like about three weeks after finishing chemo. And I was going to get a lumpectomy, but literally last minute, I said, “Just take them. Take them both.” And my surgeon said, “Are you sure?” And I said, “Yeah, but I just don’t ever want to go through chemo again. Hopefully, I just want to try to prevent this as much as possible, whatever.” So, I did get the surgery and then it was like a sense of relief. That was like, I cried. I didn’t really cry that much. I cried, but not, it was a different cry when I got out of surgery. And I just remember just, “Did they get it? Did they get it all?” That’s all I remember saying, “Did they get it? Did they get it all?” And I did get 8 lymph nodes removed. They were negative, so that’s great. I did not need to get radiation, which is another good thing. But I’m currently still on immunotherapy for about 4 more rounds. So right now this treatment that I’m on is like a piece of cake compared to chemo, this is just nothing compared to that.
But yeah it’s been like so crazy. I spoke to you like prior and we were like on the same path like roller coaster. And it was like, it feels like so much better when I was talking to you. I was like, “Oh, I like that. We’re, we’re here. We understand like our ugly phase that we feel like we’re going through and then the air going through death and everything like, felt like in our 30s.”
[00:06:59] Maria Costa: And I still think it’s wild that we were diagnosed a day apart.
[00:07:03] Jeanelle Adams: That’s crazy.
[00:07:04] Maria Costa: A day apart.
[00:07:05] Jeanelle Adams: Same age.
[00:07:07] Maria Costa: Same age and a day apart.
[00:07:09] Jeanelle Adams: And it’s like, this was destined.
[00:07:11] Maria Costa: It was. It really was.
[00:07:13] Jeanelle Adams: Yes, definitely was. Yes. Oh my God. Yeah, so yeah that’s been my journey, some, just some of it.
[00:07:24] Maria Costa: Wild.
[00:07:26] Jeanelle Adams: It’s so crazy. It’s been like a rollercoaster.
[00:07:28] Maria Costa: Super easy. Just piece of cake.
[00:07:31] Jeanelle Adams: Yeah. It’s, you know what’s crazy? I feel like when we talk to breast cancer survivors or anything like that, or our breasties, it’s like, how much time did you put in? As if we were in prison. Like, how much time did you get? How many rounds did you do? Oh, okay. I did, and it’s being so young and it’s so hard, I don’t think people understand that people can look like us and we look normal or anything like that, but inside, we’re just 80 years old, we’re physically falling apart and it’s the worst experience ever. I think as a young adult, it’s just been the worst because I felt like everybody else’s life was going on and mine stopped.
[00:08:14] Maria Costa: Yes, like our life stopped with a pandemic and then to have it-
[00:08:18] Jeanelle Adams: Oh my, I felt like I was in another pandemic!
[00:08:22] Maria Costa: Yes. It’s like, two years of that. Now I lost another year and a half. I’m going on year two. It’s like, where’s the last four years been?
[00:08:30] Jeanelle Adams: And that’s what I said. I said, this is ridiculous. This is, I just want to say I’m 30. I’m not, I don’t want to say, I’m not even, I lost that time.
[00:08:39] Maria Costa: Yes. Yeah. I feel, because time is something we can never get back. And I, we are the same age, but I have not had children yet, so I froze my eggs before I started chemo. And it’s now I’m like I’m 35 or I’ll be 35 in December. I don’t know when I’m going to be able to use my eggs. And it’s like at least that’s one positive thing about this. I was able to freeze my eggs.
[00:09:14] Jeanelle Adams: Yeah. That’s, that is a positive. They didn’t even tell me about that probably because I had a kid already and I was just, I wanted to get the ball rolling, but I’m happy you did that.
[00:09:25] Maria Costa: Yeah, it was, how anybody gets pregnant, it’s a miracle. It’s truly a miracle, because it was so regimented. My stomach was so black and blue and this is torture men have men could never.
[00:09:42] Jeanelle Adams: No, they couldn’t. They couldn’t deal with no boobs or nothing. They just they couldn’t do it.
[00:09:47] Maria Costa: My dad walked in the one day I was giving myself shots and he was like, “Oh no, what are you doing?” I said, I’m literally just injecting hormones into my stomach. But he thought it was really cute. So I got 26 eggs, 19 matured. He’s like, “So you can have 19 kids.” I was like “I can have 19 chances.” He’s like, “But you could have 19 kids.” I was like, “Do you want 19 grandchildren?”
[00:10:10] Jeanelle Adams: Do you want 19? Because you’re going to watch them.
[00:10:14] Maria Costa: He was like, I’m going to need some help. Yeah, and it’s so different when you are a single woman going through this. Yeah. Everybody, a lot of women in my support system are married or have somebody or also went through a traumatic experience. And I don’t know what would have been worse if I was dating somebody and they broke up with me for this or doing this single and it’s not so much that I didn’t have a support system. I have a great support system. It’s like, I don’t feel like a woman. I put a dress on today. I did my makeup, but I don’t feel like a woman.
[00:10:55] Jeanelle Adams: I feel that. Yeah, I feel that.
[00:10:57] Maria Costa: And I don’t think I’ll feel that again.
[00:11:00] Jeanelle Adams: It was hard. Still like I didn’t look down for a while. I feel like my husband did everything and, as much as he tells me like “I don’t care about that. You’re, you’re alive. You’re good. You’re beautiful.” And it’s like, thank you. But just to me, I don’t like what I’m looking at in the mirror. That’s not what I’m used to. That’s a different kind of but wait, Maria, just tell your story. Yeah. I don’t want to, I don’t want to cut you off. Yeah. Just tell you’re story because your story is so interesting.
[00:11:34] Maria Costa: Yeah. So, I am Maria. I am 34 years old. I was diagnosed at 33, but I have a very extensive family history of breast cancer. My grandmother had breast cancer in the eighties. And then fast forward to 2009, my aunt was diagnosed and fast forward to 2021, my mom and my dad’s sister, my other aunt were diagnosed within weeks apart. So it’s time for my annual and I’m at my gynecologist and I asked, I said, Hey, my mom who is also her patient, that she was just diagnosed with breast cancer and my dad’s sister was also diagnosed with breast cancer. So now I knew it was on both sides, but now it’s really on both sides. But at this point, neither my mom nor my aunt did genetic testing. So we didn’t know if we had the BRCA gene yet. I’m basically told no. I’m too young because my mom was in her 60s, my aunt was in her 50s, and my gram was, I want to say she probably got it when she was in her 50s, but not diagnosed to her 60s.
So I’ll just have my regular routine mammogram at age 40 because they were because my aunt and my mom were so old. So frustrated, I didn’t know what to think because again, I’m 33 years old or 32 years old. I don’t think anything of it. I’m like, okay, whatever. But the more I thought about it and the more I spoke to my friends about it, they said, you should really call back. And say you want that in your file that you asked for, you want that in your file that you asked for a mammogram and you were denied. So fast forward to a year, my mom, my aunt, both my aunts and my mom are both doing wonderful. My grandmother passed in 2020, but it wasn’t because of breast cancer. She was a 32 year survivor from the 80s. They gave her a very high chance of not surviving and she survived till she was ninety one years old.
[00:13:41] Jeanelle Adams: Look at that. Come on now. That’s amazing.
[00:13:43] Maria Costa: She, yeah, she was very inspirational.
[00:13:46] Jeanelle Adams: That’s very inspirational.
[00:13:48] Maria Costa: Yeah, she’s great. These are most of her decorations behind me.
[00:13:52] Jeanelle Adams: Oh yeah, that’s what you told me, yes. I love it.
[00:13:57] Maria Costa: So I, my mom and my aunts all recovered beautifully. My mom didn’t have the gene. My dad’s sister, my aunt didn’t have the gene. So we’re like, okay, it’s great, but it still was in the back of my mind that something could be wrong. I was on, I had IUD as my form of birth control for many years. So I never got a period. So right before my appointment in 2022, I started getting periods regularly. And the day of my appointment, I was due for my period. So my boobs were like really swollen. And she does the exam. She goes up to do the breast exam and she immediately finds a lump. But I’m told “Did you have caffeine today?”
And I was like, “No, I woke up, I showered, I’m here and I got to go to work. Like that’s my thing.” I said I was going to Starbucks after and she said “I’m sure it’s nothing. It’s probably nothing. Because again, you’re so young.”
[00:15:01] Jeanelle Adams: I hate that.
[00:15:02] Maria Costa: I hate that too.
[00:15:04] Jeanelle Adams: Take it out of their vocabulary.
[00:15:06] Maria Costa: Yes. And then so she set me up with this imaging center to have a mammogram. So I called the one close to my house on my way to work. I tell my dad immediately because I was like, I’m not telling mom until I get my biopsy because she had just gone through it. But I could tell my dad and it just ate at me all day at work. And so I eventually told my mom that night. But when I called the place to get my mammogram, they’re like, “Oh, we can’t get you in until August.”
Now, this was July. And I was like, again, what was, I was still in shock. So I was like, okay, bye. My mom called, or when my mom talked to me, she said, “You need to call the other locations.” I called the location in the South Hills, which is like 20 minutes from me. And they got me in immediately. And so my lump was found on a Tuesday. My biopsy was on a Thursday. And I went to that imaging place and they said, “So you called another one and you couldn’t get in?” I said, “No, they told me a month wait.” They said, “That is not our policy. If you find a lump or a doctor finds a lump, we get you in within 24 or 48 hours.” They, every nurse, they were wonderful.
They were absolutely wonderful. She goes, “We will have a talk with them because that’s not, no, it doesn’t matter how old you are. You’re going to come in here and we’re going to do this.” So that was Thursday. Monday I got the call that it was breast cancer and it was invasive lobular carcinoma. So you go through all everything.
I was three different stages. At first I was stage one. Then after my MRI, I was stage two. After my surgery that I chose for a double mastectomy because mine was in my right, but my mom and her sisters was in her left. So I was like, just take both because I don’t. Again, I don’t want to go through this again.
[00:17:00] Jeanelle Adams: Yeah, exactly.
[00:17:02] Maria Costa: When I’m in my 60s have invasive ductal, which my mom had. So I went in and it ended up being stage 3. My tumor was 10 centimeters.
[00:17:13] Jeanelle Adams: Oh my gosh.
[00:17:14] Maria Costa: And they took 12 lymph nodes, 11 of them were malignant. And when I got to my wonderful oncologist, she told me, she was the first one to say this, “You have probably had this for a couple years now. But it was very slow growing. But you have had cancer for a very long time.” Yeah, but I had zero symptoms. I had nothing. And I had asked, I said “If I waited until 40 to have my mammogram, what would’ve happened?” She said, “You would’ve known before then, because it probably would’ve spread to other organs.”
And luckily my margins were clear. They did not break the margins of the lymph nodes. But I went through, I had 16 rounds of chemo, but they kept getting delayed because I had issues with my reconstruction. I had reconstruction, I got infected. My reconstruction is no longer. So it kept pushing back chemo. So I started chemo in November. I was supposed to finish in January. I started in November, ended in May. That is how many delays that I have had. And I tolerated chemo pretty well. I’m blessed. Other than losing my hair, I really, only one cycle I was very sick. And then I had 25 rounds of radiation.
[00:18:40] Jeanelle Adams: Oh my God, how was that?
[00:18:43] Maria Costa: It was daunting. It was exhausting because you had to get up every day and go, right? And I had a recurring seroma on my right side and we had to stop radiation because I had to get that drained and had a drain placed. And because of that, I got an infection after radiation that ended me back in the hospital. Yeah, it’s, it’s been a year. I’ve had six surgeries. I just had a surgery three weeks ago and I am still in pain. I still have my drain. It’s I’m back to where I started a year ago and it just, when does it get better? That’s exactly when does it, when do you start, when do we get to start normal 34 year olds?
[00:19:28] Jeanelle Adams: Yeah. Because now it’s I have these, so I wanted to get, I think I told you I wanted to get the deep, but yeah, I wanted to get the deep, but I was they told me “Just come back in five years because of your, diagnosis.” So I just want to make, basically just want to make sure you’re alive in five years.
And now it’s okay, I have to get, implants, which I, like you said, I had an IUD for a long time, so I don’t want to keep putting these things in my body. But now I have these expanders, which are so uncomfortable. To this day I’m, what, six months out of surgery and I just feel, they’re very uncomfortable and it’s people are like, I’ve, I met a girl and she had her extremism for three years and I said, how did you tolerate it? Like, how? I don’t I can barely sleep on my side.
[00:20:20] Maria Costa: And even my aunt said she had, she also had them and she said they’re, she’s still uncomfortable and she’s almost two years out. Because it’s, they take it’s not a boob job. We had amputation.
[00:20:36] Jeanelle Adams: Oh my god, that’s what I say! And I try to explain that to people. And that’s the worst. And I know that people don’t mean nothing by it. “Oh, that means you’re getting a free boob job.” But no, not the scars. We don’t get no sensation. Some of us don’t get nipples. And it’s…
[00:20:54] Maria Costa: Hi. Present company.
[00:20:57] Jeanelle Adams: Me too. I don’t have any. So we’re in company, girl. So it’s we’re the real life Barbies. We have no nipples. We have no sensation. This is not a cosmetic surgery.
[00:21:10] Maria Costa: And it’s so important because the implants just go on top of your breast tissue. There’s nothing here anymore.
[00:21:19] Jeanelle Adams: Nothing added at all. There’s nothing. No.
[00:21:23] Maria Costa: And I am completely flat over here right now and over here because I did have the expanders in and then they came out. So my skin was stretched a little bit and I was very large chested. I had double D’s. So I’m like, I knew I had a lot of skin there and so my left side looks like a small A cup, but on my right side now from my most recent surgery is completely flat. So I’m like, I’m lopsided.
[00:21:52] Jeanelle Adams: Yeah, how am I going to manage this?
[00:21:55] Maria Costa: And I don’t, they don’t know if I can have reconstruction again because my issues with the infection and I they’re pushing for the DIEP surgery and I’m like, I don’t know if I want that.
[00:22:11] Jeanelle Adams: It’s so intense.
[00:22:13] Maria Costa: Yes, I had melanoma, right? It was stage zero melanoma, but I still had melanoma.
[00:22:17] Jeanelle Adams: You still had it.
[00:22:19] Maria Costa: So this is my second bout with cancer. Even though the first time it was just dig it out, move on, we’ll keep checking you. But I don’t want to put my own skin and cells and everything up here when I already removed that because that’s where the cancer was. Because I have to have a biopsy and this is the other thing, I had an abnormal test come back and I have to have a biopsy at the end of October and in my mind, I was like, “Oh, it’s cancer again.” Even my oncologist was like, “This is very routine.” I was like, “No, it’s cancer. It’s done. No. Yeah. I had this.”
[00:22:52] Jeanelle Adams: I was literally just on the phone with my nurse navigator before this and because I have scans next week and I was just like, she’s like, “Why didn’t you tell me you were dealing with this pain?” And I was like, “Because I don’t want it to be cancer. I just don’t want to hear it’s cancer.” She’s like, “Jeanelle, it can be anything. It could be from chemo. It could be from this.” And I said, “No, it’s cancer, girl. That’s cancer. I know what it is.” And it’s just please don’t let it be. But sometimes I feel like we just have to tell her, give her some.
[00:23:19] Maria Costa: Because they’re like, oh, it’s super easy to take care of. And it’s is it though?
[00:23:24] Jeanelle Adams: We have to go through this. We’re the ones.
[00:23:28] Maria Costa: I still have my port and I am very superstitious. I was like, I don’t want this out. I said, as long as my oncologist is okay with me keeping it in, I am keeping this in until I know I am a hundred percent clear. My surgical team was like, “I want it out in a year.” And I said, absolutely not.” I said, “Because I’m not dealing with that surgery again, because-”
[00:23:47] Jeanelle Adams: That was so uncomfortable.
[00:23:50] Maria Costa: I know. And I was so black and blue and it’s you just felt it right over here. And you couldn’t sleep. I couldn’t sleep because of the expanders. Little did I know at the time I had an infection. But it was just horrible. Those are things that people don’t talk about.
[00:24:08] Jeanelle Adams: No, they don’t ever talk about that. I was trying to prepare myself for the surgery, but there was no preparing because everybody was, “Oh, it’s easy.” No, I looked like I was in an abusive relationship. It was just so black and blue. And I was like, and at the time, I didn’t tell nobody about my diagnosis or anything. I was trying to just go about it and live my best last days as, pre cancerous. And I couldn’t, I was just bruised. It was horrible.
[00:24:37] Maria Costa: So you mentioned how you cried after your surgery. I cried when I was diagnosed. I was at work. I was at my brand new job. I just started a month before that. And I told my boss, “I’m going to take a phone call. I’ll be right back.” And I was numb. I’m brand new at this job. And I just texted my boss. I was like, “I have cancer. Can you bring me my water bottle?” That’s what I said to him: “I have cancer. Can you bring me my water bottle?”
They were amazing. They’re like, “Do you want to go home? Like we can get you an Uber. We’ll get your car to you.” I said, “No, I need to be here. I need to be here. I need to work.” And I made all my frantic phone calls. But really the next time I cried was literally they were rolling me into surgery.
[00:25:25] Jeanelle Adams: Right? It’s so, because I feel like our brain is on autopilot. We just have to go. It’s go, go go ,go, go.
[00:25:32] Maria Costa: I have to wake up every day and go to work. I had to get I had to continue to live my life until the day of my surgery.
[00:25:39] Jeanelle Adams: And that’s what I was thinking, the same thing. I kept when I was diagnosed, I was new to at work. I was like three months in and it was so like, I felt I had good relationships with everybody there and everything. When I told the managers and everything, they were very it was amazing. They were so good with me. They. Let me work from home when I started chemo. But prior to all of that, I remember having doctor’s appointments and going to work right after, like MRIs and going right after.
[00:26:10] Maria Costa: Oh, absolutely. Half day in the office and go have a biopsy, then come work from home. Go to my appointment, finish in the office. From the day of my diagnosis till my surgery, I was working, but it was like my brain, it’s I just didn’t compute what I was doing. It was just and they, my company has been wonderful. Like I said, I was only, I started in June and I left right before my surgery and all I wanted was a happy hour just with my co workers. They were phenomenal. They have this big like I don’t even know how many people showed up I’ll have to send you the picture after this because I was totally blown away by all the support and I knew that’s exactly where I’m supposed to be. Because I feel like if I had a differentl job, it just wouldn’t have been the same experience.
[00:27:10] Jeanelle Adams: Yeah, exactly. Yeah.
[00:27:11] Maria Costa: But what, I don’t know if you get this a lot, but because I’m out of treatment and I am in the next phases it’s like people think that you’re automatically better.
[00:27:24] Jeanelle Adams: Woo! Honey, I think right now, I think it’s the hardest part for me. Because during treatment, after treatment, when you’re basically you can’t do anything, that’s when everyone is contacting you and everyone was, it was so much support and you’re not saying that I don’t get it now, but it’s completely different.
And ,but once they see you ring that bell. “Oh, she’s better, right?” She’s so good. We don’t have to text her no more, and it sucks because I feel like this kind of road to survivorship is the hardest like this.
[00:28:01] Maria Costa: Oh, absolutely.
[00:28:02] Jeanelle Adams: It’s so hard. And I don’t hear people talk about that enough. And it’s-
[00:28:07] Maria Costa: They don’t, it’s your diagnosis. And till you ring the bell.
[00:28:11] Jeanelle Adams: Yeah. It’s not over because I honestly, I would assume that it was over after that, but then it’s, I would assume that everything was over, but then, living with cancer and now knowing things, it’s not, there’s different treatments, there’s clinical trials, there’s this, there’s that, and it’s like, this is forever. It feels like it’s like a forever thing.
[00:28:36] Maria Costa: It does. I have I haven’t had, I’ve had, I have independence, but I don’t have independence for the last year. Yeah, because after each one of my surgeries, I can’t drive. So I’m relying so many other people to help me. I still can’t lift this arm high enough to like, I had my mom helped me put this dress on. It’s a lot. And that’s what people don’t understand. And I, we’re both 34. And My first appointment after chemo, they told me that I’m basically going to remain in menopause until my body goes into menopause.
[00:29:18] Jeanelle Adams: This is what they told me too.
[00:29:20] Maria Costa: I asked, I was like, what does that mean about my fertility? I’m single. When I was diagnosed, I didn’t think of my fertility. I didn’t, that’s not where my mind was. And to be told you could possibly never be able to carry your own child, that was stripped away from me.
[00:29:40] Jeanelle Adams: Exactly. And this is not something that like, you didn’t go out and get this.
[00:29:46] Maria Costa: This was just this is the hand that I was dealt.
[00:29:49] Jeanelle Adams: Yeah, it’s the worst. Exactly.
[00:29:52] Maria Costa: Why? I don’t know because I think I’m a delight. I don’t know what I did.
[00:29:56] Jeanelle Adams: I feel like I’m a great person. I wouldn’t even wish this on my worst enemy, honestly. I say that a lot and it’s you know what? I don’t, I might not like this person, but I would not want this person to go through any of this.
[00:30:11] Maria Costa: No. And people, it’s good intentions. People say things to you that are good intentions. I’m told I am beautiful. I’m an inspiration. I’m this, I don’t feel that way. I don’t feel that I am beautiful. Because this whole time, I’m freaking out that my little flippy.
Oh my god. Look at this right here. Me too. That’s how
[00:30:35] Jeanelle Adams: I feel. Oh my God.
[00:30:37] Maria Costa: Can we put it that way? The whole time. Like I am, this is what, or, oh, it’s your smile. It’s this. You can tell me that till you’re blue in the face. I will never feel that. And when I go out, it’s I dress the nine. Sometimes I wear a wig. Sometimes I don’t. And let me tell you, the day that I wore my blonde wig, that is the most attention I’ve gotten in a long time. And it irritated me. It irritated.
[00:31:06] Jeanelle Adams: I was going to ask you that. How is it now? Okay, like, how is it? Do you feel normal when you go outside? Or does it feel awkward?
[00:31:15] Maria Costa: What going out or wearing my wig?
[00:31:17] Jeanelle Adams: Just going out out, outside in general.
[00:31:20] Maria Costa: When I went like my core group of friends, I’m fine and everything. But when I go to different places, I’m with other people who continue to build me up. But as a single 34 year old, it’s nobody’s going to approach me to talk to me. Guys aren’t coming up to me and talking to me.. And, or if they do, they’re like, “Oh, she had breast cancer. Like she’s so strong. She did this.” And the conversation turns to my mom had it. My aunt had it. That’s great. I’m also single. So it’s like dating. I know that should not be a main priority for me.
[00:31:56] Jeanelle Adams: No, but it shouldn’t be at 34 years old with cancer.
[00:31:59] Maria Costa: And I dress fantastically. Like I look cute all the time. I’m embracing my non chess to go from a double D to nothing. That is a huge adjustment. I can even be wearing a t-shirt. Like I went to the Pitt game with my friends on Saturday and I just look down and I’m like, this logo should be out to here. And it’s not, it’s completely nothing. And it’s a brand new shirt and it’s hard. It’s hard to look at this body and say, this is what I have to deal with. And I will take off my shirt for anyone. Listen, I was like, I don’t got nipples. It’s fine. If I, if my bathing suit top came off in the ocean, it’s fine. Y’all. But to be intimate, I don’t know if I could.
[00:32:45] Jeanelle Adams: Yeah. Yeah. I that’s been hard for me. Like I’ve noticed like I keep my shirt on or anything like that. I don’t like even my daughter. She didn’t-0 I know, she’s a kid, but she’s when I first had surgery and when I took my shirt off, she said something that it scared her that my chest scared her. And I was like, Imagine how I feel, like not being funny, but imagine if she felt scared, it was like, this is just not what I expected. It was just the worst. And then, like you said, people try to make you feel a certain way, but it’s not what they say. It’s us. And, when I look at my chest, it doesn’t say strong. It’s just…
[00:33:28] Maria Costa: It’s what I have. It’s, this is who I am now because I, when I had, I sent you that picture of when my hair was curly, but with my expanders and I kept saying, because God bless my dad, my dad took me to a lot of my appointments because my mom was working well. My dad was working too, but he was able to work from home and take me to my appointments.
And I looked at my dad, I was like, “Dad, I have Frankenstein boobs. These look like Frankenstein boobs.” And he’s like “It’s fine.” And I will say my scars have healed beautifully, but my right side has been opened three times now. And I still have the bandage over here. So I don’t know what this is going to look like when I take it off. And over here, the scar, it was open twice. And the second time they used staples. Because the infection was so bad, they said they opened it and it was like Mount Vesuvius, like it was really bad. I said, “Huh, okay.” So they couldn’t use stitches because the puss would have dissolved the stitches. And that’s what I think about the GIEP surgery too. I don’t want scars on my body.
[00:34:35] Jeanelle Adams: Everywhere, and I don’t want that either. I just want to feel normal again. But I don’t think, now it’s like the quote unquote new normal. But. I don’t know. Like, when is that going to happen? When am I going to feel that? Is it going to be when I’m completely done with treatment or after surgery or, that’s been hard.
[00:34:57] Maria Costa: Four or five years from now because we’re not technically cancer free. Four or five years.
[00:35:01] Jeanelle Adams: Thank you. And that’s another thing we have to live with that on our mind. It’s like everyday living in fear of reoccurrence. And I don’t want to, it’s I don’t want to live like that, but that crosses my mind all the time.
[00:35:17] Maria Costa: Was yours hormone positive?
[00:35:19] Jeanelle Adams: No, negative.
[00:35:20] Maria Costa: Okay. So mine was, so I, that’s why I’m in menopause. So I take a hormone blocker and I was supposed to start this new med Verzenio, I think it is. I’ve heard of that twice today for two years. So the Arimidex and the Varzenio together, there was a clinical trial, the Monarch E trial, I think it was called. And they together, it like helps, it lowers the risk of reoccurrence. Well because I had an infection and because we are waiting to do this surgery I had a couple weeks ago, I hadn’t started the Verzenio. So I’m already, I’m supposed, I was supposed to start that after radiation in July. So in the back of my mind, I’m like is the Arimidex working? Is it? Is it feeding on something else? Because I’m not taking that second element and I don’t think I’m going to start that until after my next oncology appointment. Because I was told like, “This is your path. This is what you’re taking.” And this entire time, every path I’ve been on, there’s been a bump in the road. With every single thing that I’ve done.
[00:36:31] Adam Walker: I wanted to pop in and really just say thank you both, for being just so profoundly open and honest and vulnerable. It’s been inspiring, I think, to listen to, and I really appreciate the strength you both have.
[00:36:52] Maria Costa: Thank you.
[00:36:52] Adam Walker: But I did want to ask one question before we close out, because I could honestly, I think this conversation could cover four or five or six episodes and maybe we should do that in fact. But before we, before you think about that, I did want to ask you what would you say to any other young women that are in your shoes right now?
[00:37:16] Maria Costa: Don’t take no for an answer. I should have fought harder in 2021 because my path could look totally different. If you say no, have them and make sure they put that in your chart. And then maybe get a second or third opinion. If you feel like something is wrong, you are your best advocate.
[00:37:35] Jeanelle Adams: Yes. Nobody knows your body more than you and don’t ever let a medical profession tell you that. I would just tell people that you’re the captain of your own ship, that you decide what happens in your journey, not necessarily a team or anything. So that’s just-
[00:37:54] Adam Walker: I love that.
[00:37:55] Maria Costa: For my most recent surgery, cause they didn’t want to do it. And I said, “Listen. You keep sticking a drain in me. You keep, and it’s a recurring issue. I want the surgery.” And they’re like, “Okay, we’ll do it,” but it was going to be, let’s just wait and see what happens.
Yeah. And that’s their thing. “Let’s just wait to get you to scan.” “No, I’m in pain now. Let’s do this now. What are you doing? You’re literally sitting here. So come on.” Yeah.
[00:38:22] Jeanelle Adams: Yeah. Jeanelle, what you said, you are your own best advocate and I think it’s always so important to remember that. Again, I, I could go back, go back on mute and listen to you both talk for so long. It’s just, it’s so helpful and really, I think it, what you’ve done today is you’ve helped those of us that care for others that are experiencing this to see behind that curtain that’s so hard for us to understand and hopefully just to gain a little bit of empathy for where you’re coming from. And so I think you’ve done a great service to to the breast cancer community both the people that are going through it and hopefully to those of us that also care for those individuals. So thank you. Thank you for doing that.
[00:39:09] Maria Costa: Thank you for giving us a space.
[00:39:11] Jeanelle Adams: Yes. Seriously. Thank you.
[00:39:18] 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 @AJWalker or on my blog, adamjwalker.com.