0:03  
Hello and welcome to breast cancer conversations, a podcast brought to you by survivingbreastcancer.org. I'm Laura Carfang, breast cancer survivor and founder of survivingbreastcancer.org, a nonprofit organization providing community, education, and resources to empower those diagnosed with breast cancer and their caregivers from day one and beyond. Our podcasts are made possible in part by corporate sponsor Store My Tumor. If you haven't done so already, be sure to head over to survivingbreastcancer.org to subscribe to our mailing list and receive the latest news and insights from our breast cancer community? 

0:41  
I mean major things that are like I'm 43 and why do I feel 143 Tell me why no one's explained it to me. I had a total hysterectomy. No one's explained what I shouldn't. Well, I'm sure my knee hurts. Or my my joints hurt because I'm sore. so to myself in like, maybe this is breast cancer.

1:12  
If you enjoyed this episode and find it helpful, be sure to take a screenshot and share it on social tagging survivingbreastcancer.org. We want to help as many as possible. In this episode, we have something a bit different for you today. This is our roundtable breast cancer conversation with breast cancer survivors, Jill and Mandy. We met in Duluth, Minnesota, grabbed a cup of coffee, had some food, and opened up about what it was like to live with a cancer diagnosis. Thank you for showing up today.

1:42  
I explained all these symptoms, and they were like, it’s called allergies. And I'm like, that's right. Yeah, totally allergies. I’m so glad it’s not cancer. I thought I was getting lung cancer. Oh, yeah. Like, allergies. So why is it so easy for us? Because we went through this traumatic experience immediately a jump to this could never happen to me. This never happened to me. It happened to me that music happened.

2:07  
Yeah, yeah. But I tell you what my main my main mental issue is, is I want my life back.

2:19  
Welcome to the conversation.

2:22  
Right there right now. So my three months they called so as it was supposed to be last Monday and maybe that Friday before they call them said you know the doctor thought what about like end of July? I was like, I'm insured and then I just thought of going back to my oldright I'm gonna go to my old for my stuff now everything they get me in there. Not that I I loved where I went, but it was like a second. This is my first follow up right since I've been done. Like really my first one. Yeah, right.

3:00  
You know, you had many different oncologists too.

3:02  
Probably four or five different.

3:10  
Different ones, because people are leaving.

3:12  
And my main one left, right after I was done with chemo, so he got me through all you know, and then I saw a local. And then I saw a different local. And then I saw a regular one, you know, it just and I told my story 500 times, I just something's gonna get lost. So now pushing it back a whole month. I was like, I I know, I'm okay. I know that I couldn't be pushed back. But I'm not ready for that yet. And I have a list. Yeah. And I have a list of things that and a lot of it is like, why does my knee hurt so bad? Why can't I walk anymore? Yeah, I mean, major things that are like I'm 43 and why do i Feel 143, tell me why no one's explain it to me. I had a total hysterectomy. No one's explained what I should be feeling like, you know what I mean? Like, so and I could do the research but I'm not gonna I'm not. I don't. I don't learn as well. 

4:20  
Anybody educated understands the words like I can read a bunch of words in an article, but not always understand what they mean.

4:28  
Right. I like to say, hey, what do you think? And that's why this is awesome. Yeah, because I would love to. I've been reading all like, what you've been posting lately? Oh, yeah. I was like, yeah, I mean, my husband, what are you doing everyday what she's doing, you know, I just, I love it. 

4:45  
That means the world because sometimes especially on like a virtual community. Yeah. Like you're putting out so much content. You know, like, I hope people appreciate it or are they reading it? Oh, like it? Yeah, it's so easy not to like it. Like people give feedback when something's not right. Yeah, right. But so I really appreciate you getting something out of it.

5:00  
That last post to put on it was about your weight and your, so that was really helpful. I'm like, Oh my gosh, this is real. I mean, and I know we've talked and I know it's certain things are real, but it's just like no one else really. I don't believe myself Jill, but sometimes I don't believe my I'm thinking maybe I put everything to wait. I say, Well, I'm sure my knee hurts, or my my joints hurt because I'm overweight. So sometimes I don't believe myself in like, maybe this is breast cancer that's done that to me. 

5:38  
Right now. I'm laying on my knees hurt and my feet hurt because of the meds or is it because I'm training for a marathon? You know? So yeah, same thing like yeah, it's hard to know. Yeah. And then you don't want to like say anything cuz you feel like judged by your doc and I don't feel judged by my oncologist. But I kind of the last time I saw him, it was like, yeah, you were complaining about all these things. But you're still marathon training. And I'm like, it's not because

6:04  
So tell me is it from now? But could he? Yeah, so right, you know.

6:11  
Right. I went to this amazing conference talk on Wednesday night before flying out to Minnesota. And it was held by Mass General’s Cancer Center and Newton-Wellesley, we have a hospital outside of Boston, so many people in that area and attend. And it was spoken by an oncologist as well, as a psychologist. They were sharing about the emotional and mental side effects of a breast cancer diagnosis, and exactly what you were just explaining where it's like, okay, this is like, is this happening? Is this not happening? And I remember going in and explained all these symptoms, and they were like, it’s called allergies. And I'm like, that's right. Yep, totally allergies. I'm so glad it's not cancer. I thought I was getting lung cancer.

7:00  
Oh, yeah.

7:02  
They're like, no allergies. So why is it so easy for us? Because we went through this traumatic experience immediately a jump  to this could never happen to me. This never happened to me. It happened to me. That means it can happen again.--Yeah, right. Yeah.--And I think that from the psychologies perspective was, you know, if you get into any sort of trauma, a car accident, a how many things could happen to us, we walk outside and something terrible can happen to us. That doesn't mean it's going to rain. It doesn't mean that the cancer is going to come back, you know, and, sure it can, but we could also win the lotto. Or yes. We could also, you know, you know, terrible things happen. People lose their houses, there's tornadoes, there's natural disasters. But I think once we've experienced something terrible, there's that PTSD that's like, wait, I don't even know how to respond to that. So I'm just trying to protect myself. Yeah. So I'm prepared for when, if and when, and now you're just learning the next like, 45,50,60,80 years of your life and fear which is like, not healthy. No, no,

8:02  
No.

8:03  
It's so true.--I want to know more about your story though, like so. You just right now are out. 

8:14  
I'm done treatment and Oh yeah, I've been done. finished my Herceptin in March. Yeah, beginning of March. So yeah, this and then I did like a six week March, April May. Yeah, like a six week. I could be doing this around six weeks. But anyways, now I'm on my three month. Oh, yeah, this would be my very first three month checkups. Yeah, so I don't even know what to do. I don't even know what what do you just talk? I don't even know. Yeah, they don't really do anything, right.

8:52  
No, my bloodwork? Oh, yeah.

8:56  
Good. Yeah. Yeah. I don't feel like I sit and think, when is this gonna come back? I just don't i don't think I don't do that. Yeah. But I tell you what my main my main mental issue is, is I want my life back. That's like my number one thing I want. So I must think about it a lot more than I really realize I do. Because I don't feel like I'm living the life I which is a good thing somewhat, you know, but yeah, I just feel like this just took my carefree life away. That's how I feel. And that's where things are so in they exactly the same as they are now but it's like, mentally things are so much worse. So that's, that's what I'm kind of. Yeah, I always say that. I said, I could get through breast cancer 700 times, physically, but mentally it's a mental it's it's a mental doping. It really is. Physically I could do it. It's, I mean, yeah, you know what I mean? I really think we could you stay positive and you just get it done. But yeah, once. Once it hits you're like, yeah, once that is over all that you're like, Whoa, okay, who's gonna watch out for me? Why is my finger hurt? Oh, my fingernails aren't growing. I'm nervous about that. Like, you know what I mean? Like, it's been a year. Oh, it's chemo. It lasts a year. Don't worry about it. Well, it's been way over a year. Why are my fingernails not growing? Like stuff like that?

10:40  
I have a friend in Chicago. She's actually the one that's coming to volunteer. Yeah. And she is almost done with her 10 years of tamoxifen. And she messaged me freaking out because she's like, gonna be done and no,--this is a whole nother state. I can't even fathom that.--Like No, I'm not. I don't have anything. Something that's supposed to keep it from coming back now that I'm not gonna be on tamoxifen anymore. And so yeah, we're gonna have a nice chat when I see her this week but let me know if you find that Yeah, but just like she asked, she's just super stressed out about the thought of, I mean, it stinks. Like taking tamoxifen stinks, but when you’re not taking it like what's preventing it.

11:24  
We have people who were diagnosed with like triple negative, not as terrible as tamoxifen and these aromatase inhibitors are.

11:33  
Yeah, they don't. Yeah,

11:36  
Yeah. I was initially diagnosed triple, triple negative.So that kind of scared me. I learned a little bit about that. And then once it was removed, and they tested it again, I was estrogen positive. So it changed a little bit. Well, a lot.

11:55  
So they say, exercise and diet is the key. That you can be doing to prevent recurrence. And in one of our interviews, if you look it up on our podcast breast cancer conversation, there's an interview with Michelle who’s triple negative. She started a nonprofit called too unstoppable and it is pretty much like a buddy system to get people to walk together. Not any other, not weight training that

12:22  
Send an email

12:27  
But she's triple negative. She's like just like you take your pill every day I wake up and I work out every day because that is the one thing that I can actively do to make sure this can’t be bad. And that was just like so empowering to because it's so easy to like make excuses or we need to be moving and we need to be watching and I mean, is that easy because these medicines also on steroids were on biggest gain weight like their job.

12:51  
Wait, when you say steroids we're on my own. Is that are you on steroids.--So when I mean like the chemotherapy--Okay, so with the chemo not your aftercare if you're not like there's no steroids issue with our Arimidex or whatever, I don't believe so. Okay, I don't I really don't want that. Okay, but with the steroids totally. Yeah,--yeah, exactly.--But But nutrition and exercise is number one. I mean, I kind of know. Yeah, I started right. Probably. Maybe two weeks after I got done with chemo I got on that treadmill. Yeah. I mean, I was I wanted this so bad. I gained 45 pounds almost 50 pounds during chemo and and so I wanted it so bad. It's just because well then I was diagnosed during it with hypothyroidism and Hashimoto’s. It's like I'm so on. The way I took it was on your they have to test for it separately besides your just your regular thyroid test. But it's like a I want to say like an antibody antibody or something on your thyroid. It's an it's an autoimmune disorder. So it just shut I think it shuts your thyroid down even faster. So that was fun. So, as I was trying to exercise, it just was nothing was nothing was happening. And I was getting, I couldn't even sit like, it wasn't a so I haven't exercise for a year sore. It was like, every bone in my body hurts. I mean, I could, then I thought this, why am I doing this? Why am I doing this? So then I quit doing that. Well then I started up again. I thought, Mandy do it. And I would get up in the morning, put my headphones on and walk on the treadmill. I thought just muscle through it. Yeah, if this is the way like this is the way it's going to be. And I did that and then before I was diagnosed I had lost 40 or 50 pounds. And which was probably a godsend because then I couldn't move at all. Plus But anyways, um

15:10  
Yeah, every I talked to my mom just--makes me feel so I'm sorry. So much better like--no, you're not alone.

15:17  
Yeah, experience. Yeah. I mean, and I want you to tell me more because it's shown here I get anything for you to like express. Yeah. And you're going through because yeah, justreassurance like I've talked to you and William also like co works with me when the organization is my boyfriend is my caregiver. He like he's talked to like thousands of women because I can't do this all by myself. Sure. First, there's a jealousy thing. I'm like, why are you talking about this girl's breasts? But then I'm like, you know what, you know, and like, you're in it. Like, this is the one thing Yeah. So like we're giving back and everyone talks about the weight gain. Yeah, no one's like, Oh, I had breast cancer and I lost 10 pounds. Yeah, it doesn't happen. 

15:54  
No. I think you'd have to be really conscious. You'd have to be like, Okay, I will not gain weight during either. And I don't think I could have done that. So there's two battles I fought my life, cancer and weight. And so I mean major battles. those are those are raised up there together with me I've always been a big person and weight has always been my vow. And I decided once I started working on nothing, I gave up like I lost, just willed to do it. I was like, whatever. I thought, you know what, Manny, don't beat yourself up because I don't think I'm ready to fight. That next this battle. I just thought one that was really hard. Just give it some time. And I think when it clicks, it'll click or it's like, ok I am read ready? No, let's do this. You know,--you'll know when you I do.--Yeah, let me and I can honestly say those are the two things in my life that have been the hardest battles and I'm not ready to fight that second one right now. I think I'm getting there. I am.

17:00  
I'd love that I love, you're so in tune with yourself that you're like, I just went through cancer. That was hard. Yeah, I need a second.

17:08  
Yeah, I beat myself up. I'll like every day. Like, do it just do it and then I grab something like yeah, you don't know. Any Yeah, but I I finally stopped it I finally stopped the mental game I was playing in my head where it was like, just knock it off. Well, you're gonna, exactly, you know,--hard time stopping that.--I mean, that's why it's really hard and but I had to physically say it out loud. And into prayer, honestly, like I just say, Please, I'm going to give this up. I'm going to give this up to you now. You know, I mean, that was my thing, but, and yeah, so now. I almost feel like it was a godsend that I met this. Well, I've known this lady for 20 years and when she told me about this gal that she actually started with her before she was diagnosed with something. Her back was sore or something. And she did not keep me in the mail could not they were just like what is going on? Like, all your numbers are higher than like, apparently they should be but good ones good numbers, whatever it was. And they're like, this shouldn't be like, it was all nutrition. She went through nutrition and you know, she said I never took one nausea image because I've never felt better in my life. So I'm like, okay, maybe this was the way to go. I'm ever you know, I'm really happy. No, I will how that goes

18:41  
Let me know how that goes, we can do appointments together. Yeah.

18:44  
The only thing that they don't take insurance she doesn't take insurance. Okay. It's 60 bucks or something. Oh, treatment. Oh, I would totally do that.

18:55  
Yeah. I think about before I before I was diagnose that was saying I did Beachbody. Like I love like just the workouts. I mean, I felt so after you know, so I thought as I was walking, I thought you know what, I'll walk in the morning and then I love doing Beachbody. I'm just going to do Beachbody at night. Well, you don't really you shouldn't really pick up where you left off.

19:23  
I started going here I go, like 10 minutes into it. You guys. I had Charley horses from my groin, both of them.

19:36  
I said, What am I doing? I follow the modifier. Now I'm like, I love the modifier. And like I said, You're the jumping jacks. Like can't bounce. I'm like, Yes, step right. Tap left. You know, and actually, I'm doing what I can't. I'm watching the video when they're trying to do burpees I'm like, I'm just gonna watch it. Yeah, yeah, try and get down with an old lady now. Yeah, but once you pass, yeah, no, like, stop. Yeah. You Just don't modified burpee Oh.

20:03  
Yeah, I can't I broke my elbow better years ago and I can't do any. Like, even I would be nervous to do yoga. I don't know, maybe if I worked through that, too, like putting any pressure down on this, but I have to do something.

20:20  
Have you practiced like meditation or mindfulness or what?

20:22  
I would I know and I have not seen as I know, I would benefit from that. That's me. That's my sort of thing. Yeah. Like, sometimes I even I don't let people know that that's new to me, you know, because I don't know what anyone else thinks. So it's like, but I know that that.

20:43  
When it was new to you, I started meditating last July, when I think I saw your friend Braden. Yeah, and my boyfriend were out and caught Yosemite National Parks and ever done before. I knew it was good for me now. I'm gonna do as I was doing wrong. This way around oh my god Game Changer really and I you know whether it's like five minutes I do in the shower I do in the car I do it like personally when I wake up I'm just like, what am I grateful for today? Like they woke up some days it's grateful that like I'm having a good hair day. Yeah Nice. It's like really profound and I'm still employed have health insurance or like, you know, something that like, you know, the world is like really crazy place like it's really not so bad we're here you know and so just taking like, two minutes whenever you have to like take a deep breath and like be like I like doing in the morning because I get really stressed out very easily like super like crazy anxiety. So obviously this person in the morning someone's like putting on like your power suit like super power woman's suit, like your shield. But before I go out into the world, like I got this, so you made my pep talk and it works really well. And also because I found out when I was talking to my radiologist and the terrible things about like insulin and glucose and cortisol, you know, like stress is really like, has a very physical response to your body. And it is not good for you, right? And I'm like, I need to figure out a way to like, be less stressed. Like, I don't really consider myself a stressed out person, but my body is telling me that I'm very stressed. Yeah. Which leads to weight gain leads to all of these things. And I'm like, maybe I am stressed. Maybe I am playing maybe. I don't, I don't know what's going on. But I need help. So I think you all to get to that point when you're ready to like, make that change. And I share it with you. Because I'm just now at that point, literally four days ago when I'm like intermittent fasting like we're doing it. Yeah, I'm two years out from my surgery date. Okay, so I'm a little bit further along than when you are finished. My surgery, April 7 2017. Okay, and then was on additional chemo therapies through the end of 2017. I started by aromatase inhibitor on January 2018. So now for like a year and a half, almost a year and now I'm finally like, Alright, I gotta make a change like we can no longer be like what was me? I'm still all about like, I have breast cancer. I'm gonna talk about it. Yeah, but I'm now ready to be like I don't know. get my life back. The other thing that I thought was super therapeutic that like sharing with people is like a cool because I joke for a joke. There's all these stories. I like fight with my clothes every morning, right and like between the hot flashes, things not fitting, I have lymphedema. So like,--you do--yeah mild, but yeah, I do. It sucks.--That's my one of my question.--There's just like a lot going on. So I told my boyfriend I'm like we are throwing out everything in this closet. We are donating it to like women who need like interview clothes, like really nice clothes. Yeah, I was like holding on to the fact that one day I'll flip back into like, one day constant reminder that I'm like, I don't give a shit anymore. I am donating everything that was your lag no longer. And I'm going to go out and use trying new stuff. At least when I wake up and go to work tomorrow. It's gonna be exactly to be flattering on me and I’ll feel good about it. And if I lose the weight, and when I lose the weight, I will happen again. I mean, to me, that was like a very physical action. That was very helpful for me. Yeah, like, I am not that size anymore. And you know what? I'm glad I'm not, its going away.

24:33  
Yeah, I just that just happened to me day. two weekends ago, my daughter had a soccer tournament was going to have a soccer tournament, and it was supposed to be super hot. And I don't wear shorts. But I'm like, I need a new pair of capris or something that looks summery I instead of my full jeans, you know, like, and I went to Don't worry, I just, I wasn't even planning when I went into. And I that's exactly how I felt. I said, I'm done. Yeah, I'm done reading it, or you know, waiting for this to fit me this. Nope. I said I'm gonna buy something that makes me feel good my size and move on in it. I found more clothes than I've ever felt. Once I like it was gated off. Wait, yeah

25:21  
Gave up on it. 

25:23  
Yeah, like I have to feel good right now as me. Yes. I can't think about when I was 50 pounds later. I have to feel good right now.--That's gonna make a world of difference and everything.--Yeah, yeah. So I really do feel like things are kind of the hill, you know, uphill and I'm starting to kind of over it because I think I'll get there. Yeah, yeah, it's just sad that that's such a big issue. Weight, you know, but I know in my mind I know my whole life will be better. I do. If I Feel good internally extra, whatever everyone else does. Yeah, you know, I just need to lose weight, then you'll be happy. I’m so not like that.--How many kids do you have--3--what are their ages--um, let's see 12 just turn 10 and it's gonna turn six next week. So five.--Awesome.--Yeah, it was. Yeah. 

26:49  
How did they deal with everything you were going through?

26:51  
He was four, when you know everything started. So he just didn't. I didn't know Go there. Like when I sat the kids down to tell them. I mean, he just playing he didn't get it. But I got into my 11 year old and he was 11 or 11. I probably got into the first three words, said, well, Mom, I don't know. I mean, mom had a test on my my boobs and he was you have breast cancer, don't you? That quick? I was like okay. Wow. I mean, he knew just from I had a test on my yeah, honestly. Yeah, it was it. And he knew and then my middle daughter just kind of sat there and Okay, what does this mean? So I just very lightly, I didn't know. I didn't know. You know, I think I had already went down to Mayo so they really loaded me up with like, coloring books and you know, stories to read to crosby And cece the younger ones where this is chemo cat and this is what's gonna happen and you know that sort of stuff, but, and they did good the only thing my daughter really struggled with was being bald and it was physical. it at first I was like kind of irritated because we're not being people. I mean like, so she was like, you going to wear wear a hat are you and I was I want to say who’s going to care to a nine year old girl if you your mom is bald, oh, people are staring at her. My friends don't know what it's all about. External stuff, you know? So I gave it to her. I was like, yeah, you know, I'll wear a hat. I'll do that. You know, she was never rude to me. It just, I let her have it. And then once I finished chemo and yeah, my hair started coming back halfway through the summer so what July June I could feel her kinda like were you going? I’m going to go start? Okay. You know, next day we've talked me my husband to talk to you, okay? Okay. And then she immediately like just one day quit sitting anywhere. She said, I'm never sleeping anywhere. But here. I can't go to grandma's. I can't go anywhere. And we just kept pushing her like honey, you know, are you okay? And by the chemo, I'm so afraid you're gonna die. You can't leave me. Where are you going? Walmart. I mean was like, Whoa, I need some help. You know, so it felt like she like didn't know that cancer could. You could die. She didn't know that when I told her and when I was going through all this, and it's like all she like watch something right? Something triggered some something triggered and it was just now it's all she had to be right next to me all the time. So then we did we got her some therapy and she she's been doing much better. She still hasn't spent the night last weekend. She tried so hard. She had a birthday party like six girls. Made it to 9:30 and just said I, I said that's better. 

30:09  
Baby steps to you know.

30:11  
I'm so glad like you were aware to actually get her help.

30:14  
Yeah. Well, I've never been I said that people said that you just need to come on, glide her along, push her along and I was like never way it will never happen because I have never been in the position as a nine year old girl with my mom with cancer, right? I cannot tell you how I would react to that. We can't make her do something, you know. So I didn't know how to parent it. I didn't know I heard it. I was like, oh, come with a manual rate. Like I've never done this. Yeah. So now they don't want to talk about it very much. Especially my my son, my oldest. He's like, Yeah, good. You know, we don't need them. Yeah, and I don't want I think I just let it go. I know it's it's just not even a Not even. It's not even a thing anymore. Yeah, although my five, my five year old I went on a class trip at the end of the, to the zoo. First, the first words were are you going to wear a hat and I go, okay, honey, I have hair. Okay, like it was just so automatic. If we go somewhere, mom puts a hat on. So I was like, it just came out of his mouth. He didn't. I almost said why. I was mad at my five year old. Whatever. Yeah, yeah, but it was good. I really do think it. It helped me it didn't let me my kids didn't really let me count my pity parties as much as I wanted to. Yeah, someone needed a juice or their butt wiped. I couldn't really go there. So and that that was a big like, I, I can't I think that was my main breakdown was I can leave them. I can't leave them, right? Like it. I can't, I can't leave them. So that's when I was like, let's do this, and I never looked back. I never really did.

32:27  
Never looking back, and let's do this. I love that. Thank you so much Jill and Mandy for joining me for some coffee, some delicious food, and our breast cancer conversations. And thank you everyone for listening to our show. I would like to acknowledge that all of the information on our podcast from personal experiences and are not a substitute for professional medical advice, you should always contact your medical care team. If you're looking for specific topics or would like to be a guest on our show, please feel free to reach out to me. My email is laura@survivingbreastcancer.org until next time, keep on thriving.

Transcribed by https://otter.ai