Strong in Spirit: Maintaining Positivity with MBC

[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.

[00:00:17] Metastatic breast cancer is the most advanced stage of breast cancer and is a breast cancer that has spread beyond the breast and nearby lymph nodes to other parts of the body. Metastatic breast cancer cannot be cured today, but it can be treated with a focus on extending and maintaining quality of life.

[00:00:34] For those living with metastatic breast cancer, taking care emotional, social and spiritual needs through the support of friends, family and counseling can improve your well being. Today’s guest had her life turned upside down in January when she was diagnosed with metastatic breast cancer at the young age of 35 with no family history.

[00:00:55] She had just started a new job and was supposed to be getting married this month. Despite receiving this devastating news, Marianne Alexander is determined to focus on hope and maintain positivity. through her diagnosis and is here to share her story with us. Marianne, welcome to the show.

[00:01:13] Marianne Alexander: Hi.

[00:01:14] Adam Walker: You have had, uh, quite the journey.

[00:01:17] Um, and, and, and so let’s, let’s start with that. Like, let’s start with your diagnosis story. Can you share the circumstances that led to knowing something was wrong? And then kind of take us through the steps of how things transpired over the next month.

[00:01:30] Marianne Alexander: Yeah. Uh, so basically I was just in the shower taking like a forever shower.

[00:01:39] Um, and I was like, I’m just going to give myself a self exam. It’s the beginning of the year. Why not? Like, and I was feeling around and I felt a really large lump. Um, I freaked out, called my fiance in. I made him feel for it. He felt a really large lump. He made like a weird face. We called then my mom and, and.

[00:02:05] My mother well soon to be mother in law. I’ll just call her my mother in law. Um, and they were both like, uh, you should go to the doctor Maybe just to get it checked out because I don’t have any family history of breast cancer at all. Like no one in my family right, um and We went to the doctor. I Well, I went to the doctor And then she was like, ah, this feels a little weird.

[00:02:34] Maybe you should go get a mammogram. So just to be safe, cause she was like, it might be fatty tissue too. Um, cause I didn’t have any of the other breast cancer markings, I guess. Like you would have like dimpling or you’d have like a discharge. Um, your skin might look like, uh, an orange, like the outside of an orange peel.

[00:02:59] I didn’t have any of that. It was just like a weird lump. And. So I went and I got a, um,

[00:03:08] the mammogram,

[00:03:09] the mammogram, sorry. That’s chemo brain. And, um, they found, uh, two large lumps. Um, one was actually the one that I was feeling was really big and it was, um, actually fatty tissue. Uh, but then they found a not great looking one, um, really deep, uh, behind my breasts.

[00:03:39] And one in my lymph node, they said my lymph node, uh, she said, the doctor said that, um, but the lymph node looked a little, uh, scary or sketchy, or she, she, she used a weird word and that really freaked me out. Um, and then from there only a week later, I had an ultrasound and. Um, the doctor said that my, they weren’t calling it tumor at the time.

[00:04:09] They’re really careful about what they say because they really don’t want to scare you or freak you out if it isn’t something to worry about.

[00:04:17] Adam Walker: Yeah.

[00:04:18] Marianne Alexander: Um, she said that it was a really concerning lump and I just, I knew it. I felt like I did. Um, just because. I feel like if it wasn’t, they wouldn’t have said something like that.

[00:04:41] Um, or whatever, maybe I wouldn’t have had to have a biopsy so fast. Um, because literally like the next week I had a biopsy. Wow. Yeah, it happened very, very quickly. Um, I had the biopsy on my left breast and my lymph node, they sent it out and then. Only a week at the end of the week, I got the results already.

[00:05:08] Um, and at the time when I was first diagnosed, it was only, um, it wasn’t metastatic. Um, it was just stayed to a, and it was just breast cancer, which I was excited about because it’s terrible, really early, um, And I met with my oncologist. She was awesome. She’s still awesome. I love her so much. Um, and then she said I needed a PET scan just to make sure it wasn’t anywhere else.

[00:05:45] And I was like, yeah, sure. Like, let’s do this. This is awesome. Um, and then results came back from the PET scan and that’s when they, um, diagnosed as, Stage 4 breast cancer metastatic, um, because I have lung cancer as well. I have, um, lung nodule, excuse me, lung nodules, um, on both sides, not just

[00:06:12] one side.

[00:06:14] So, That’s pretty much how I got diagnosed.

[00:06:17] And now I’m here.

[00:06:21] Adam Walker: So I just want to make sure I’ve, I’ve got it. So you’re, you’re 35.

[00:06:26] Marianne Alexander: Yeah.

[00:06:26] Adam Walker: Um, so you obviously like younger than you would typically even be having mammograms and, uh, and not only, you know, you, you find something, you get it tested, you think it’s breast cancer. That’s think curable, curable.

[00:06:40] Right. Uh, but then you find out, no, it’s actually stage four.

[00:06:44] And

[00:06:44] again, like 35, like what, like walk us through that. Like what is that? I mean, that’s a lot in a very short amount of time. Yeah.

[00:06:53] Marianne Alexander: And like, I think the worst part in the beginning was going to all the doctor’s offices and appointments with uncertainty of not knowing what’s going to happen, how you’re going to handle the treatment.

[00:07:07] What kind of treatment you’re going to have, um, meeting with different, all different kinds of doctors, like in the beginning, I met with my regular primary care doctor, and then I met with my oncologist and my nurse navigator, and I met with a surgeon. It was a lot.

[00:07:27] Adam Walker: I mean you went from no doctor’s visits, right?

[00:07:30] I mean because it like once a year maybe yeah all the doctor’s visits. Yeah Wow,

[00:07:35] Marianne Alexander: and it really like, um, like I had a lot of like past traumas and um I was I never went to the doctor because I just was afraid I didn’t like to be touched. Um And it just like rip it. It was like ripping the band aid off.

[00:07:50] Like you’re doing this MRIs. I’m doing PET scans. I’m doing CT scans. They’re just like, like I’m ripping my shirt up in for everyone. And it just like completely numbs you to anything you had before. Like any, like I had like depression and PTSD and it just like completely made those so small and tiny because everything was going on and everything’s surrounded by the cancer now.

[00:08:19] That you have to really kind of put those on the back burner. And I’m, I don’t even, I feel like I don’t even have PTSD anymore. Well, it’s crazy. It like cured it in a way, which is kind of cool, but at the same time.

[00:08:36] Adam Walker: So, so let’s talk a little bit more about kind of the life shifts. You know, I know, uh, I mentioned in the intro, you know, you’re, you’re engaged, um, which congratulations, um, and I, and I’m, and this is a tough question to ask.

[00:08:50] So, so answer it to whatever degree you’re comfortable sharing, but I know, uh, you had planned to get married this month. You’ve, you’ve had to put that on hold because of a variety of things. I mean, can you talk us through a little bit of what that’s been like and why you had to make those decisions?

[00:09:04] Marianne Alexander: Yeah. Um, so I actually was supposed to get married this Sunday. That was supposed to be our wedding. Um, uh, last year, um, am I allowed to say my fiance’s name? Of course. Yeah. Dylan proposed to me. Um, originally I’m from New York and, uh, he took me to New York and proposed to me, uh, outside central park. And it was like really magical and wonderful.

[00:09:40] Um, and awesome. Uh, and we planned the wedding. All year, like we had the venue, we had a baker, like we had DJ everything. It was all set up. We, we even like went to the venue and picked out our plates and napkins and like, I never knew so much stuff went into a wedding. It’s crazy. Um, but when I got diagnosed, uh, we decided we had to cancel it.

[00:10:11] Um, just because there’s. So many things that I wouldn’t have been able to enjoy on my wedding day. Normal, not normal, like regular people who don’t have cancer don’t really think about like, I’m bald now. I don’t have eyebrows. I don’t have eyelashes, no facial hair. I feel like now I don’t feel like this in the beginning.

[00:10:40] I felt like I wasn’t myself anymore. Like I’d look in the mirror. I’d actually stop to look in the mirror. Um, just because. I didn’t even want to look at myself. Um, but actually what helped me with that is, um, my mother in law got me stickers that said, I’m beautiful and, or I’m strong, or,

[00:11:03] Adam Walker: I love that.

[00:11:03] Marianne Alexander: Yeah, and we put them on the mirrors.

[00:11:06] So, when I looked in the mirror, I read that and it, it actually did help. Really helpful. Um, but also like at the wedding, like I would have probably had to wear a mask and I wouldn’t have been able to have a drink. Like I wouldn’t have to, I wouldn’t be able to like post or, um, and the main reason why we really, really canceled it was, um, because insurance.

[00:11:33] So

[00:11:34] I would probably lose my insurance if we got married. Um, my fiance has his own business. He doesn’t make like crazy amount of money, but. I’m on, um, I lost my job last year and actually got a job right the week I had my biopsy. I got a new job. Um, and I was really excited, but I, I had to ultimately turn it down.

[00:12:01] Um, it was going to, I was going to be working at a, um, retirement community as their like activities person. I was really excited about that.

[00:12:08] Adam Walker: That sounds great. You’d be great at that.

[00:12:12] Marianne Alexander: I was really, really excited. But, um, my oncologist was like, you probably shouldn’t be around all those old people. Yeah.

[00:12:19] That’s probably not a good idea.

[00:12:20] Adam Walker: Seems like a bad idea. Yeah. That’s that’s wise advice. Yeah.

[00:12:25] Marianne Alexander: So, um, because of insurance, that’s why we don’t know when we can get married now in the future because metastatic breast cancer is forever. Um, maybe they’ll come up with a cure in, in the future. the future, hopefully.

[00:12:41] Right. Um, but right now there’s no cure, so I’ll have to be on treatments forever.

[00:12:47] Adam Walker: So. So, all right. I’m trying, I’m trying to think of the way I want to ask this. So, I mean, kind of back to what I said a minute ago, right? You’re, you’ve gone from December, you know, everything’s regular. I don’t want to say normal, there’s not really normal, but everything’s regular.

[00:13:05] Uh, so now April with, I mean, a profound amount of life change. Um, how have you been able to cope with that mentally, emotionally, uh, what have you done to keep your spirits up?

[00:13:17] Marianne Alexander: It’s been a roller coaster of emotion. Um, some days I’m fine. Other days, like yesterday, I think I’m past everything and I’m sobbing all day because I’m afraid that I’m gonna die.

[00:13:39] I, most, most days now, I’m okay. Um, in the beginning, it was so, so hard and you have to come up with ways to be positive, um, Because I do feel that negative energy does feed the cancer. And it’s, you get like fatigue and you don’t want to get out of bed. And it’s hard to even think about going outside some days.

[00:14:18] Um, but do find things that make me want to get up is like the support of my family. I don’t know where I would be without them. Um, sorry, I, um. My parents, they still live in New York, but they moved here temporarily for like a few months to be with me. Yeah, it’s awesome. Um, and they’re, they’re actually leaving this weekend to go back to New York to sell their house to come live here.

[00:14:57] Um, they take me to my treatments. My fiance Dylan, he takes me to my treatments. He goes to every single doctor’s appointment with me. every single one. Wow. Um, my fiance’s family, they are, they take me to treatments too, but they’re also here all the time at our house. They’re bringing over food. They’re cleaning.

[00:15:24] His mom came over one day and just cleaned our whole house. My parents do the same too. Um, they’re just so supportive and For me, that’s a big deal. Like for someone to come over and be like, okay, you’re getting out of bed today. We’re going to go for a walk. That’s helpful. Yeah. Or even just sitting outside when I can do it myself, like sitting outside with no shoes or socks on putting my feet in the grass, And just like really feeling the earth and I know that sounds so weird, but

[00:16:00] Adam Walker: no, it doesn’t

[00:16:02] Marianne Alexander: well, I feel like if someone saw me like Like they walk by and see me like touching trees and like feeling the like ground with my bare feet They’d be like, what’s that guy doing?

[00:16:12] but um, i’ve really opened a sense of Or, or being alive. Mm-Hmm. And being grateful for that. Hmm. Um, like all pictures of the sky for random, like randomly or, yeah.

[00:16:33] Um,

[00:16:34] but, and also to help me cope too, um, my, the hospital where I go, the treatment center, they have all these classes and like, um, they have groups.

[00:16:50] I haven’t done any of the groups because they’re on my, the same day as my treatment. Okay. Um, but. I found a group recently that I have to look into. My schedule is so busy now, it’s crazy. So like sometimes like finding the time to do things is impossible. Um, but they have art therapy classes you take and you just show up and you either, you could either color and do your own thing or you could do a project with them.

[00:17:18] It’s really cool. Love that. Okay. Um, and they just, or my nurse navigator helps me a lot too. Um, she is awesome.

[00:17:29] Her

[00:17:29] name is Lindsay, and I don’t know what I’d do without her.

[00:17:33] Adam Walker: Nurse Navigators are amazing. Yeah, I text her

[00:17:36] Marianne Alexander: all the time. She helps me with everything. She’s just awesome.

[00:17:43] Adam Walker: I love that. I love that.

[00:17:45] So let’s talk a little bit more about, uh, you know, how you’re, how you’re coping specifically, like how do you, how do you lean into hope? How do you lean into positivity? Um, not relying on, you know, statistics or averages or anything like that. Uh, like, like talk a little bit more about that.

[00:18:03] Marianne Alexander: Yeah, that all the statistics are wrong there.

[00:18:07] I’m just gonna say that. Um, I mean, they’re probably right for some people, but like, it’s such a wide range. It’s like just taking a whole bunch of different people and putting them in a room and then saying like You guys all have the same breast cancer, but that’s not true. Like everyone no one has the same breast cancer

[00:18:30] Adam Walker: That’s right.

[00:18:30] It’s all unique. That’s right.

[00:18:31] Marianne Alexander: And um, don’t Don’t look online. I’ve done that and that’s bad and that’s where like no positivity goes. Yeah

[00:18:42] Adam Walker: Dr. Google is not your friend, right?

[00:18:44] Marianne Alexander: No, it’s really not um But for me, a lot of my hope, um, comes from praying now, which I wasn’t used to, and I never really did. Um, but now I pray all the time.

[00:19:03] I pray every day. I just, sometimes it’s like a quick prayer. Sometimes it’s prayers for other people. Sometimes I’m in treatment and I see someone and I’m like, they need a little prayer and I say one for them. And it actually makes me feel better and it makes me have hope. And I, Yeah, I just that’s one thing that I do all the time that I love that I love and also, um, I’ve joined a a whole bunch of facebook facebook groups reddit groups Online.

[00:19:40] Okay, and on like instagram and tiktok and stuff Of women who also have metastatic breast cancer. Um, there’s one Susan Komen actually has a facebook group and You Like once in a while somebody will say like type in there and say like I need to know How long you guys have been around like

[00:20:05] even though

[00:20:05] metastatic is not curable

[00:20:08] Adam Walker: Yeah,

[00:20:09] Marianne Alexander: you can maintain it and still have a life And not have to do chemo all the time.

[00:20:15] Maybe just people are just on immunotherapy. I hope get there sometime. Right. Yeah. Um, there’s some people like, I think one lady typed and she said she was, she’s had metastatic breast cancer since 1992. Like it’s crazy. Like, and some people are like 15 years, 10 years. And it just, that really gives me hope too, because.

[00:20:38] Then, if, like I went and I saw a second opinion doctor, she was very by the book. She went by the statistics and she told me that I only had two years to live and I don’t accept that. I didn’t accept it and I’m not going to, um, and my regular doctor said, you know, she’s not God, but she’s optimistic. And ultimately I decided not to go with the second opinion doctor, but, um,

[00:21:11] Adam Walker: I think that’s a pretty good perspective.

[00:21:12] Yeah. Yeah. I like that. Yeah. I’m not God, but I’m, but I’m optimistic. Yeah. That’s a good, that’s the kind of doctor you want in your corner, I think. Yeah.

[00:21:20] Marianne Alexander: She’s awesome.

[00:21:21] Adam Walker: Yeah. Um,

[00:21:23] Marianne Alexander: so I try not to look the averages or statistics because It’ll debilitate your life and

[00:21:30] you

[00:21:30] feel like you don’t have any hope, but you really do.

[00:21:34] And there’s so many people who have breast cancer that like, or even metastatic breast cancer, but like didn’t even know. And I’m meeting all these random people like in the street. And there’s some of them, some people are even younger than me and it’s crazy.

[00:21:53] Adam Walker: Yeah.

[00:21:54] Marianne Alexander: Um, but that, it really gives me hope when people have, are living past the standards.

[00:22:00] Adam Walker: Gives, uh, it gives us all hope, right? And I’ve, and I’ve talked to so many, uh, metastatic, um, people that, that have, that are, You know, that are doing well and thriving. And so, um, I love that. I love that. Love hearing your story. So, um, I guess last questions we’re wrapping up. Um, what final advice or message would you have for listeners that are hearing your story, maybe that are, maybe they know someone that’s going through a metastatic, uh, diagnosis or, or maybe they are themselves.

[00:22:33] Marianne Alexander: Um, I would say that you can do it. Just don’t give up. Don’t throw the towel in as many people say. Um, uh, I know you don’t want to hear that everything will be okay, but because sometimes when someone says that says to you like, Oh, everything will be okay. Don’t worry about it. They’re going to get through this.

[00:22:56] You’re like, How do you know? You don’t you don’t know anything. You don’t know what I’m going through right now. Yeah, but they it’s true. It will get better. In the beginning, it will be very, very tough, but after a while, you’ll get to manage your symptoms. You’ll manage the treatment. It gets easier and you know, you’ll have bumps in the road, many bumps.

[00:23:24] I mean, I’ve already had an infected port was in the hospital. They removed it. It’s only been a few months. I just got this one in on my left side and hopefully that doesn’t get infected too. But if it does, it’s just. another small setback. Um, and a lot of people have been saying this and I’ve been taking it as my own recently.

[00:23:47] And they say the, um, the kickback is stronger than the setback or something like that. I feel like my brain’s like really off today, but, um, he’ll just, you’ll get through it and, and ask for help. Don’t be afraid. Um, I never asked for help and this has humbled me into asking for help for everything. Um, and.

[00:24:13] You know, do research online if you need like financial help. There’s, there are people out there to help you. There are grants, ask your navigator or talk to people. Um, there’s even people willing out there to send you box in the mail full of like random stuff. I’ve gotten like quilts in the mail and people send like makeup.

[00:24:37] And, uh, there’s one called like the hope kit. Uh, and. Um, there’s just, there’s so many people out there willing to help you. You just have to ask.

[00:24:45] Adam Walker: That’s right. Well, Marianne, I, I really appreciate you sharing your story. I know it’s not easy, but I appreciate the hope and the positivity that you bring to your life and to your story and just really appreciate you taking the time with us today.

[00:25:03] Marianne Alexander: Yeah, thank you so much. I, I really, really appreciate it because I think that The more people find that you can live a somewhat normal life with non static breast cancer, the more they might have more hope and be willing to live more.

[00:25:24] Adam Walker: That’s right. That’s right. That’s what it’s about is, uh, is having, having hope.

[00:25:27] So thank you. Thank you for that. To answer the question of what’s next, for breast cancer patients. Susan G. Komen is proud to present the Breast Cancer Breakthrough Series, a virtual share table educational series in partnership with industry experts, scientists from academic institutions, and patient advocates who directly speak to recent clinical research findings and new treatments.

[00:25:53] This series focuses on the new science and technologies that are close to becoming available to patients. Thank you to AstraZeneca, Merck, and Hologic. For their support of the breast cancer breakthrough series in its inaugural year.

[00:26:14] 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 at Susan G Komen on social media. I’m your host Adam. You can find me on Twitter at AJ Walker or on my blog adamjwalker.

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