[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.
Losing your hair is hard. As with breast surgery, it affects a part of your body often tied to your identity. This can become even more of a challenge when you have young children who have a strong emotional response to a parent’s breast cancer diagnosis. Today’s guest was diagnosed with breast cancer at the age of 29, with three young girls at home. Here today to talk about the emotional impact of the physical changes that her body has had to undergo, both for herself and for her family. Emily, welcome to the show!
[00:00:48] Emily Wolfe: Thanks. It’s a pleasure to be here.
[00:00:50] Adam Walker: Well, I, I love, uh, I love hearing people’s stories and I know you’ve got one and I know it relates to your family. So let’s just sort of dive in, let’s start with your breast cancer journey. Can you walk us through your diagnosis in the treatment that you’ve gone through so
[00:01:05] Emily Wolfe: far?
Yes. So I have kind of a weird journey. Um, I have a really large backstory. And usually for people in my position, that means, um, family history. But for me, it was my in-laws. So I have both on my husband’s grandma and my husband’s mother have both had breast cancer. Um, both within a period of time where I was part of the family.
Um, so most recently, my mother-in-law’s seven years ago, we’re almost coming up on seven years of being cancer free. So, uh, she was diagnosed with breast cancer and, um, it was just something that we hadn’t had happened to our family before. So as many families have a tested to it’s very difficult. Um, we had very similar treatment plans, but, uh, once she was diagnosed and kind of moved into survivorship, I’m going to get involved.
I’m going to give back, I really want to advocate for these three daughters of mine that don’t know better. You know, they don’t know the risk factors. So I really started getting involved with seasons you comment. And I started walking the three day in Michigan. Um, I walked for a three of them. One, one was canceled because of COVID, but three of them, and I’ve raised $20,000 for.
Um, and then this past winter, it w we got the shock of our lives, honestly. So, um, I was diagnosed on February 8th. Um, I have stage three invasive ductal carcinoma. Um, and at the time of my biopsy, we also biopsy lymph nodes. So, um, it had confirmed already, uh, spread to the lymph nodes. Um, And it was pretty extensive.
Um, my tumor was nine and a half centimeters, large, so it was quite large. Um, so they assumed it was very aggressive. Um, I’m PR and ER positive. So it’s completely hormone driven. Um, so he started off pretty aggressive. I did 16 rounds of chemo, uh, four of the AC combo, uh, which they call the red devil, and then 12 textiles.
So a post that I had, uh, two breast surgeries, one of them was, uh, more for the reconstruction. I. Decided to elect to keep my nipples. So I had a nip, what they call a nipple lift and then my lymph nodes removed at that surgery. And then two weeks later I went back and had a double mastectomy with spacer placement.
So that’s what I’ve done so far. I’m now in my healing period. Um, and I will for sure do 33. Rounds of radiation. Um, and then a lot of hormone therapy moving forward. That part gets very unique for everybody. So I’ve learned to just kind of roll with the punches and learn it as I go.
[00:03:36] Adam Walker: Um, yeah. Yeah. Well, I mean, that sounds like a great attitude and way to approach it.
Um, so, so today we’d like to talk about some of the realities of breast cancer and the impact it’s had on you as a woman. Uh, first of all, can you walk us through how you told your three girls that you had breast cancer and what was that like and how did they handle.
[00:03:58] Emily Wolfe: Sure. Um, so I have to tell you two things about this one.
I have a horrible poker face. I don’t play poker because my face says it all all the time. Um, and secondly, I absolutely have no patients. Um, so I had my biopsy on a Thursday and I was checking my patient portal probably. 20 minutes all day, Friday. Um, and my, my path reports did post Friday. So since I have a pretty extensive background with breast cancer, I knew enough to know that the pathology report was telling me that I did in fact have breast cancer and it had spread to the lymph nodes.
So I had spent pretty much the weekend hiding my feelings from my children. And so we really sat down with the doctors on Mondays. I was confirmed, diagnosed by them, and I understood a little bit more about. About the process. You know, I had, I had walked beside someone, but I haven’t been in the, in the hot seat, uh, per se.
So, um, Monday we came home from the doctor’s and we just kind of laid it out on the table. We, we really painted the picture to them that we have given so much of our time, so much for energy. These raised all of this money for Susan G Komen all to help people, you know, men and women not have to go through whatever I’m a Lori went through.
And we said that repeatedly. And the conversation and just said we’ve raised all that money so that I can say, sit here and tell you my children, I have breast cancer, but tell you that I’m going to be okay. And that we’re going to get to the other side of this and survive that. We really had to paint that, that picture home for them being pretty young.
We have three girls. I don’t think I said that. I’m sorry. So, um, we have Ava, who’s 11 Allie who is seven and Willow, who is three. Uh, so we’re kind of hitting up a bred spectrum. Um, our 11 year old, uh, very interesting, uh, Lee enough was extremely angry at first and for whatever reason, she was angry at me, which was very difficult for a long time.
So she really clung to my husband. She talked to her dad about a lot of it. Um, you know, she’s at that weird teenage age, preteen age anyway. So she really has flunked to her dad and they have kind of walked that through together. Um, our middle child, Allie struggled the most. She took the diagnosis really well.
She was not afraid to tell her friends. Um, but Nat then once treatment started, uh, she had a lot of anxiety. She was very confused about the schedule changes. Um, so we’ve really had to. Take that, you know, the mental health part of cancer seriously with her and help her work through a lot of those challenges that kids that have parents with cancer have.
So that was, that’s been an interesting, um, side of things that we were not familiar with. When my, you know, my mother-in-law was diagnosed, follows the kids are older, so it was a different, different, um, experience. So that was new for me. Um, and then Willow, Willow keeps us laughing. Um, so she was two and a half at the time.
Uh, we explained to her that mommy had boo-boos and her boobs and, um, she thought about it for a little bit and was okay with that answer. And then she came over and just gave me the biggest bear hug. And she’s like, it’s okay. I have the boo-boos in my duties now, too. And it’s just been a joke ever since that we’re curing our booboos and our boobies.
So she keeps us laughing.
[00:07:14] Adam Walker: Well, that’s fantastic. And I appreciate you giving us that sort of behind the scenes, look at the impact on your children. I think it’s just so. To know how children are going to respond. And I think it’s probably very encouraging to our audience to just see, you know, the broad spectrum of that.
So, so thank you for sharing that. So, so let’s talk a little bit about losing your hair, you know, what were your concerns and what type of impact did that have on your family?
[00:07:38] Emily Wolfe: Absolutely. I, um, would come out of the gate saying I was not afraid of losing my hair. Um, I have extremely thick, curly, crazy hair.
It took me years and years to learn to love it. And so I was just kind of at that point where I’m like, you know what I mean? I worked in the beauty industry. This is very common. It’ll be fine. Um, so I was really. Uh, upfront about it. I knew that it was going to happen. Um, really wasn’t too worried. So w I went ahead and was proactive.
Um, this was kind of one of those things that I got to take hold of. I could say like, today’s the day. Um, but I also didn’t want it to be traumatic for my kids. That’s a big deal to them. You know, it is, it’s just a weird side effect. And so, um, we went ahead and I, I planned it. Um, I gave all of my children the option to come or not come, um, see with my husband.
Um, and then I invited my support group. So my mom was there. My mother-in-law was there. Um, my sister-in-law’s actually her stylist. So she was there doing the COVID. Um, and then I brought my husband and my oldest daughter, Ava, and I’m not sure if he sent me a best friend was there too. So I rallied my fluffle as that we call them and, um, we just went for it and, uh, I was able to donate 13 inches, which was extremely.
Giving for me, I know that that will make a wig for a child. And I’m, that makes me feel better about it. It was worth it. Um, so shaving my head had my group of friends there. It was weird, but it was okay. Um, the middle child stayed home. So Allie, uh, took it like a champ when I was home. Um, Oh good. What I didn’t realize about it was that it could take forever.
So no one really tells you that, you know, once you, when you see these long clumps of hair coming out, you’re like, oh my gosh, there’s so much coming out. Well, you really have a lot of hair on your head. And so even having a sh a shaved look, I had shaved it just to, um, you know, like a clipper. And, um, it, it took weeks.
It took weeks and weeks and weeks to fall out. Uh, and I just wasn’t expecting that it was extremely painful, um, to touch my head. I explained it to a lot of people like swayed. If you rub it one way, it’s soft and gentle, but when you rev it the other way, it’s very rough and tough. And so it felt like that’s how my hadn’t had turned into.
It just, wasn’t what I expected. I expected that initial part to be the hardest, and it really ended up being that the longer the roadmap on the harder it got. So that’s actually, when I really, really started writing in my blog and I kept a hair journal, I started saying those things. That no one has ever said to me when I’ve walked them through this part of their cancer journey.
No, my mother-in-law teacher had for her. I was there at that part was extremely traumatic for us, but that was the end of it for the rest of us. You went home. And so, um, I started just telling those truths and being, you know, a little bit more honest about how that worked. I didn’t end up losing my facial hair.
Um, until I was on Taxol. So I had been bald for a really long time before that happened. So it re brought up all those feelings. So, um, it definitely think that it’s an experience like no other, um, but everybody’s really unique, um, in that, but that it isn’t just a one day you also your hair and you move on.
It’s an extremely long journey. So, um, Took it very well initially, um, Allie, our middle one. So she seven, uh, for the first four months. So almost through the entire hot, hot summer, as she refused to see me with my head completely bald, she did not want to see that it was very weird to her. So, uh, that was different for us for the first four months, I would say.
Leave the bedroom without something on my head, she got really funny about like knocking on the door, mom. It’s Allie, can I come in? Do you have a hat on the do? So she would come in and, um, finally she kind of decided that she was going to take it and be a big girl about it. And, uh, we, we overcame that fear with her and then she got much more comfortable with it, but, um, Yeah, it’s, it’s a really weird balance.
I think, to something that people haven’t talked about that I didn’t think about, um, was it’s a really weird balance between looking like a sick person because you’re bog. And so people assume that something’s wrong with you. Um, whether it be cancer or PCI or any of the other things that that could be, um, and wanting people to be.
A little bit more kinder and know what you’re going through, you know, how do you balance out that I don’t want to look like a sick person, but here I already am. And I bought, and I’m going through that. And you know, that was a, a very challenging, um, struggle for me as I would decide, like, do I want to walk around without a hat on, do I not, or are other people comfortable with that?
Um, that was hard for me, really took it and looked at it from all angles and it took me a long time to be like, Nope, it’s not about myself. It’s what I’m comfortable with and kind of move forward for
[00:12:32] Adam Walker: that. Wow. Yeah. Thank you for sharing that. And so it sounds like from what you’re describing, that you’ve got kind of a lot of ongoing conversations and check-ins with, with your family and how everyone’s doing.
And I’d imagine you’re also balancing that with your own. In side effects from treatment and just those issues. How do I mean talk about how you’re able to sort of balance those two things?
[00:12:57] Emily Wolfe: Well, first of all, my poor husband. So there are tons of feelings in our house because we have three daughters and a, uh, hormone therapy wife, the poor man.
Um, I keep reminding him that if we go through all of our own challenges, now, maybe in our fifties, we’ll just be the extremely happy. So he gets a good kick out of that one. Um, so it is a careful balancing act. All of those feelings, um, for myself, I, uh, I, like I said, I did start blogging. Um, being able to tell my truth to my computer has been really nice to me.
Um, I’m a huge advocate for mental health. I have been for a really long time. Um, I discovered the power of therapy during, uh COVID, which I think a good portion of America did. And I started seeing a therapist before I was diagnosed with cancer, and that was great for me. It really helped me process things a lot better because I was already practicing, but I’ve continued to practice that healthy mind space.
Um, I’ve read so much about how it helps people get through their cancer journeys. I literally don’t know how I would be where I am without it. Um, physically I was able to get through a lot of the treatments. Much better than the majority of patients, but mentally, it was just extremely hard for me. So. Um, I needed to give pain to my purpose, and I have found that blogging and sharing my stories, like people with people like yourself, um, and volunteering in my community.
I started a new support group for a young breast cancer patients. And so doing those things have really helped me balance out my feelings. It’s given me an outlet when the negative and a reason to keep them positive. Um, as far as my kids, um, it’s been about the support system. Uh, you know, when I had children pre-cancer we would joke like, oh, it takes a village.
Cause we’re driving to soccer and driving to dance and doing homework and reading books and you know, all of the things. Well then you throw doctor’s appointments and recovery time and sickness and you throw all of those extra things in there. Uh, two people, two parents just can’t keep up. So my support system has helped my kids get through this.
They’ve had regular visits with grandparents and friends and special trips with random people. They may not see very often they’ll come and pick them up and take them hunting, or take them to the movies. And they love that. And it’s a couple hours for writing nights to decompress. Um, you know, got things done that I can’t do as fast as they used to be able to do.
Or what have you. Um, and then I want to share that both of us have gotten through it with the support of my best friend. So everybody has a best friend. Everybody has a soulmate minus. Absolutely my husband, but next in line would be my best friend Cody. And she has been a second mom to my kids when I needed her to be, uh, she’s been a husband to myself.
Um, I know we’re going to talk about it a little bit. And the next piece that it’s just really about having somebody that you and your kids can lean on at the same kind of the same time they’re playing for the same team that has been parent, like being a parent that has been the best gift to be getting through it.
So lots of different ways that we.
[00:16:04] Adam Walker: Yeah. Yeah. That I love that. I love that. I love, I love the attitude and the approach. So, so let’s talk about, about your other, your other sort of big thing. You recently had a mastectomy. Can you share a little bit about what that was like for you and, and these are all physical changes and with emotions tied to them, did you feel that this was more or less daunting than losing your hair?
[00:16:27] Emily Wolfe: Absolutely. Um, so the mastectomy itself was not as emotional for me. Um, it was a lot more of that physical pain. Um, I had not experienced something like that before. Um, you know, I’ve burst three children. I have always taken, you know, I’ve asked my gold medal, like I had a baby, what did you do? Um, so this was kind of one of those moments I said to my mom very, very shortly after surgery, like, yeah, this is way worse than having a baby.
And so that physical pain really just didn’t leave much room for emotions, which I think was good for me, um, in my personal journey. But, um, that goes back to my best friend. My husband and I, obviously we we’ve known each other for more than half of our lives for extremely, extremely comfortable with each other.
But when it came to such a personal woman journey, they’re just things that I’m like, you know, I just need to say it to another woman. And for me, that’s really been my best friend. I have never needed as much help as I needed after that surgery. I mean, I couldn’t shower myself. She was helping me in the bathroom.
Those are just things I had never experienced before. So physically it was extremely hard, um, to get through that. But I did that with the help of a good support system. So. Um, that’s the physical, I think, you know, we’re every day I get a little bit better and working with a physical therapist to keep my risk of lymphedema down, but while kind of gaining back that strength in a healthy manner.
And, um, I’m really happy with the medical team. I’ve asked a lot of questions and that’s been good following the surgery. You know, I didn’t, I didn’t come home and lay around and let it heal. I really, you know, continued to look at what avenues. Um, kind of speed that process up to help me get to the next step.
So I’m the emotional one. It’s always a roller coaster. Like I said, this particular surgery of my sec to me was not as hard for me losing it. My hair was ended up being emotionally much harder. Um, but in the big picture, you know, you’re being stripped of your identity, your hair falls out, you know, for some people they lose weight.
In my case, I gained a ton of weight, chemo, the steroids wrecked havoc on me. So, uh, you know, at one point I was up almost 30 pounds. Well, that doesn’t make you feel like yourself. You don’t feel good. Um, you know, your energy level is quite low. That that brought up a lot of mom guilt for me. I couldn’t do the things I was used to doing with my kids.
I had to had surgeries over the summer, so I couldn’t get in the pool. I couldn’t get in the lake in somewhat that, which is something we do a lot. So those kinds of things, you really have to continue to tell yourself, this is, this is temporary. This is a today thing. So I can have a tomorrow. That really has every time.
And I have to hasn’t has to say it to me daily. My best friend has to say it to me daily. My mom reminds me all the time. Like you have to do this hardship today and give up, you know, this physical or emotional, you know, have this physical or emotional pain. So that you can have it tomorrow and that’s helped me a lot.
It’s all temporary, the hair it’s temporary, it’ll grow back, you know, this team from the surgery and, um, the scars and all of that. Those were heal and it’s a temporary thing. So, um, overall it’s important, I think, to keep reminding yourself of that, but, um, Also that it’s okay to not be perfect right away.
This has been hard for me. I’m, uh, eight and a half weeks out from my last chemo and I still have side effects and I, I didn’t know, that was thing. Um, and so that’s been a, you know, it’s a struggle. And so you have to kind of keep reminding yourself. Everybody’s body is different. Everyone heals differently.
Um, you know, for some, it might be more emotional than physical and all those good things.
[00:20:11] Adam Walker: Hmm. Yeah. Wow. I appreciate you sharing that. So, uh, so last question. What advice do you have for our listeners who might be entering their journey and are nervous about hair loss from chemo or about their mastectomy?
[00:20:26] Emily Wolfe: Absolutely. Um, so my natto, um, my number one, I always go back to it is one day, one step at a time. You cannot take it more than a moment at a time sometimes. Um, there are days where, you know, nothing happens. There’s no physical or emotional hardship for me. And then there’s days where from the moment I wake up to the moment I go to bed, I struggle.
And so I have to keep saying to myself one day, one step at a time. Um, so that’s been my motto. Um, I think the biggest thing I wish that someone would have said to me at the beginning, instead of learning it later is you are number one. Plain and simple, your number one to your family. You’re number one to your doctors.
You need to be number one to yourself. Um, you know, your kids and your spouse, or your husband or wife, um, your career, you know, all of those things, your friends, your family, uh, they will all support you. You kind of lead the way. And so it’s important to remember cancer. Doesn’t pick people that have time or half money, or, you know, all of the resources to necessarily get it.
It just comes, um, And so our job as the cancer patient, I think, is to say, We didn’t get to pick this. You can get to pick what time in our life or what kind or any of those kinds of things. So it’s our job as current Thrivers to define the path and then walk down them. So your number one, you get to learn.
Those path works out and then you get to pick which one do you want to walk down? You know, it’s your doctor’s job to give you treatment options. It’s your job to pick what’s best for you. Um, and that goes with your emotional and physical wellbeing. I think for myself at the beginning, I really didn’t put my emotional thought into things.
I was really worried about how my kids would take it. Um, and then there were things that didn’t happen the way. I needed them to happen for myself. So you are number one, you get to define cancer. It doesn’t get to define you.
[00:22:27] Adam Walker: I love that. I love that advice. That’s such good advice and because our, our listeners can’t see you.
I do want to mention you’re wearing a great t-shirt today that says not today. Can. And in the background, I noticed you’ve got a sign that says I can do hard things. And, uh, I love, I, I love your whole approach to dealing with this, and I really genuinely appreciate you being open and honest and vulnerable with us.
[00:22:53] Emily Wolfe: Absolutely. It was my absolute pleasure to be here, Adam, I thank you for all the work you’re doing for us and everyone else who comes and shares their story.
[00:23:07] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.Komen.org. 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 my blog, AdamJwalker.com.