This Breastcancer.org podcast features Aniela McGuinness, an actress and the creator of the My Breast Choice blog. Aniela knew she had an abnormal BRCA1 gene and lost her mother to ovarian cancer in 2013. A year and a half later, at age 31, Aniela was diagnosed with stage I breast cancer, three days before her appointment to schedule a preventive double mastectomy.
Listen to the podcast to here Aniela talk about:
- why she decided to create her blog and YouTube channel
- how she uses humor to get cope with things that upset her
- how she came with the idea for her mastectomy photo series
- her Halloween costume and why Halloween is the best holiday for people with cancer
Running time: 21:19
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Show Full Transcript
Jamie DePolo: Hello, everyone. Welcome to the Breastcancer.org podcast. I’m Jamie DePolo, I’m the senior editor at Breastcancer.org, and I’m thrilled today to welcome our guest, actress Aniela McGuinness. Aniela knew she had an abnormal BRCA1 gene. She had lost her mother to ovarian cancer in 2013. At 31, Aniela was 3 days away from her appointment to schedule a preventive double mastectomy when she was diagnosed with stage I breast cancer.
Just before her diagnosis, she created My Breast Choice, a lifestyle blog and YouTube series that looks at the impact of preventive double mastectomy.
After her diagnosis, she shifted the focus to cover how breast cancer, double mastectomy, and chemo can affect a woman’s body and soul. You can find her site online at www.mybreastchoiceshow.com. Aniela uses humor and honesty to talk about more than surviving. As she says on her site, “Mainly I needed something to focus on while I went through this, a place to release my creativity and feel useful.”
Welcome, Aniela. We’re so thrilled that you’re here.
Aniela McGuinness: Thank you.
Jamie DePolo: So I have to ask you, the website and the video series on YouTube, I’ve watched several of them, and they’re amazing. You started when it was just going to be a preventive thing. What sort of sparked this idea in your head?
Aniela McGuinness: Well, my mom had passed away from cancer, and I knew that I had the genetic mutation. It’s really hard to make that final choice of, “I’m going to remove healthy breasts.” And I flip-flopped back and forth, and I finally was like, “You know what, I’m going to do this. I’m going to do it.” I psyched myself up, and I decided I was going to do a documentary to force me to do it.
Jamie DePolo: Ah ha, so once you told people, you kind of had to go through with it.
Aniela McGuinness: But I’d have to go through with it. And so I was in the process of figuring out how to do a documentary,which, come to find out, it was way harder than figuring out how to get a mastectomy.
Jamie DePolo: There’s something wrong with that, but that’s another subject.
Aniela McGuinness: There really is. So I was like, “You know what, let me take a break from this,” and I had shifted the focus to instead, just being a YouTube series, like, “I can do YouTube. I can make it very present. I can make it now.” And so I can have the interaction of people as I’m going through this.
So I created the site, and I started filming stuff for YouTube, like My Breast Choice on YouTube, and it was just going to show the psychological process of deciding to remove healthy breasts. And then all of a sudden I get diagnosed with cancer, and I’m like, “Oh.”
So I filmed it. I actually filmed that call because I didn’t think it was actually going to be that response. I wanted to kind of show inside of this, and I come to find out I started showing a lot more than I thought I was going to.
Jamie DePolo: That was actually one of my questions. I’ll just jump ahead to that. That call, that video… So you taped yourself getting the news from your doctor that the results of your biopsy showed that you had cancer. That to me was one of the most raw, emotional, amazing pieces of video I’ve seen because it’s really clear that you’re really upset, not absorbing anything the doctor is saying, and you just want to get off the phone so you can fall apart. And your doctor keeps talking.
When you first saw it, it must have been really scary, but now after reflection, what do you see when you watch that?
Aniela McGuinness: Well, it was actually really funny filming that ‘cause I didn’t tell the doctor that I was filming this. It’s actually -- a friend did the voiceover for me so I could just give the doctor some anonymity.
Jamie DePolo: Sure. Sure.
Aniela McGuinness: ‘Cause I didn’t want to put her out there. It’s funny, because it’s, well, I’ve had other people say that, going, “I wish this doctor would’ve just gotten off the phone.” And I don’t fault the doctor in any way, shape, or form.
Jamie DePolo: Oh, no. I’m not faulting, because clearly she can’t see you.
Aniela McGuinness: She doesn’t know! It was a situation where, in my head, you get that phone call, you find out you have cancer, and you replay that in your head over and over and over again. And it becomes really warped, but you don’t know it does. And I, thankfully, had it videotaped.
Two days later, I sat down to edit that so I could tell everyone I had cancer, ‘cause that’s how I told everyone. It was with that video [laughing]. I’m a little mean. So when I watched it the first time, it was two days after, and it was just as devastating, because I could see my face and I could see myself breaking down. And then I had to step back and act like the editor and take apart the audio and separate out her voice and my voice, and it gave me a wonderful perspective, because what I was saying was, everything was okay, everything’s fine, and I could hear what the doctor was saying and hear what I was saying and hear what she heard, which was that I’m fine. Keep talking, I’m fine.
And unless you were there, you couldn’t see my face. And the two differences between what I was saying and what I was feeling were so worlds apart, and it allowed me the opportunity to listen to her objectively and realize that she did not give me a death sentence like in my head I thought she had. But she was telling me that this is very treatable and all these wonderful things that I was finally able to actually hear.
And so it was such a wonderful blessing to have recorded that and gone back to listen to how much I had personally warped that in my mind, that conversation, and how it was nothing like what she actually said.
Jamie DePolo: Well, and I know on your website, too, you compare it to the teacher on the Charlie Brown series, like, “Wah wah wah,” and I imagine… We’ve had other people tell us it’s that way for so many people. Everything just shuts down and all you can hear is, “You have cancer.”
Now, I’m curious, did you play this for your doctor?
Aniela McGuinness: I did send it to her… Because it’s in my one-woman show, so I wanted to make sure to let her know afterwards, like, “Hey, I filmed this,” and see if she’d be okay with it. And she preferred to stay… I straight-up blindsided her. I’d be like, “Hey, just so you know I’ve done this and here, watch this really horrible thing.”
In all honesty, poor thing. She must’ve been traumatized when I sent her that because I don’t think she knew what it was like on the other side, really, and out of the blue I kind of sent her this video link, like, “Hey, this is what this looks like!” So she preferred to still stay kind of, like, anonymous. And so I did send it to her and she was kind of quiet about it.
Jamie DePolo: Okay. I was just curious because you’ve got to wonder if maybe over the phone isn’t the best way to do that? I don’t know.
Aniela McGuinness: Actually for me, I have to say that I was glad it was over the phone.
Jamie DePolo: Oh, really? Okay.
Aniela McGuinness: Yeah. Because if I had had to stop, take time out of my day, drive over there, THEN find out I had cancer, how the heck was I going to get home? I wouldn’t have brought anybody with me. I would’ve thought it was like, “Oh, _____ (7:49).” I really did not think I had cancer, so I wouldn’t have been prepared. And this way, I at least was home and once I found out, I immediately… ‘Cause I had a panic attack after that because I watched my mom die the year before. I held her hand when she died of cancer, and so all of that just kind of floods you, your preconceived notions of what this means.
And so I walked out my front door and turned right and went straight to my neighbor’s house and knocked on their door. And was like, “Uh, uh, I have cancer.” There was no one home, and I couldn’t call. I just shut down so badly that I just needed somebody to be in physical contact with me, who knew me and who loved me, and so I went straight to my neighbor’s house.
Jamie DePolo: It’s just amazing that you have that because I wonder how… I don’t know, just if everybody could have that, if they would remember more or like you say, it would lose some of its importance, like they wouldn’t be so traumatized if they could reflect back on that later, but it’s just an amazing thing, an amazing…
Aniela McGuinness: An honest reflection on it, because there’s reflecting on it, which is just ruminating.
Jamie DePolo: Yes.
Aniela McGuinness: And then there’s really having what happened -- was such an eye opener. I realized that I cannot trust my own mind whatsoever.
Jamie DePolo: Yeah, and it really hits home, too, because one of the things we tell people on our site is, “Take somebody with you whenever you go to a doctor appointment because you’re going to miss things, you’re going to forget things, you’re going to be upset,” so that was the other thing I thought about when I was watching the video. I’m like, “Yeah, you need somebody there,” because clearly you’re not going to comprehend everything that the doctor is saying and some of it is really important. I watched that and I was pretty amazed. It was very, very interesting.
So, you’re full of very amazing things because you have a photo series about your double mastectomy that is pretty brilliant. So where did that idea come from?
Aniela McGuinness: I was in the process of planning the double mastectomy, like preventative, so I was still in that preventative mindset. And when I was looking up photos of before and after, it was all the same. And not that there’s anything wrong with those stoic photos that are black and white, a rose next to somebody’s breast.
Jamie DePolo: No heads.
Aniela McGuinness: Or the before and after from the medical… Yeah, so no heads, headless women, fluorescent lighting. So those were my two options. Fluorescent lighting, headless women, and very stoic black-and-white photos. I was like, “This sucks.”
I wanted to do something different, and I really didn’t know how it was going to be perceived because I didn’t know if people would think I was being flippant with the experience. And at the time when I just was getting a preventative mastectomy, I think it might have been perceived that way, but thankfully I got cancer and it gave me WAY more street cred.
Jamie DePolo: [Laughing] I can’t believe you just said that! But go ahead, sorry.
Aniela McGuinness: But really, in all -- I really do feel grateful that I got it, because I never had to wonder if my preventative mastectomy was the right choice.
Jamie DePolo: Well, I guess that’s true.
Aniela McGuinness: Because I never would wonder, “Oh, well, was I not going to get cancer?” No, I ended up getting cancer and come to find out it was definitely the right choice. So this was kind of just my art project to keep me going and to give me something fun to do for each stage. Each stage has its own crap that goes with it. I was like, “I’m going at least know I’m going to look forward to these photo shoots.”
Jamie DePolo: Because you have a new persona to take on with each stage. So for those of you who haven’t seen it, the first one is the pre-surgery, and you are Rosie the Riveter. We can do it. We can beat this.
Aniela McGuinness: Topless though.
Jamie DePolo: Topless. Yes.
Aniela McGuinness: My real boobs. That was my, I wanted to photograph my real boobs so I know what they look like after.
Jamie DePolo: And then the postsurgery, I don’t remember quite how long after surgery, it was the Bride of Frankenstein.
Aniela McGuinness: A couple weeks. Like I just had the drain bags removed.
Jamie DePolo: Okay. And so there’s a lot of scars, although the only real scars and stitches are the ones in your breasts, but that was an amazing photo. And then we go to the mannequin, is that right?
Aniela McGuinness: Yes. That’s after chemo.
Jamie DePolo: Okay.
Aniela McGuinness: Expanders are fully expanded, so these big, hard, plastic knockers with no nipples.
Jamie DePolo: And no hair.
Aniela McGuinness: And no hair. And I look like a mannequin. I did things that made me laugh. I’m like, “This makes me laugh.” I didn’t have anyone else to find it funny. I’m like, “I find this funny.”
Jamie DePolo: Right. And then… There was one with rubber nipples, was that the next one?
Aniela McGuinness: Yes. So that’s the final one, like the final reconstruction so you can see the breast with the permanent implants, and then I decided not to get my nipples reconstructed. And there was a part underlying feminist agenda on my side to show that I could have a photo, with breast, with nipples, and as long as the nipples were not on my breast, I could have this photo all over the internet and no one would censor it. So there’s this like slight… “This is ridiculous, people. This is ridiculous, free the nipples.” Keep in mind, prior to cancer, I never would’ve been topless. Before doing all this, I was not someone to go topless, but now I’m like, “Topless! Free nipples! This is ridiculous!”
Jamie DePolo: So you don’t get any issue because you don’t have nipples, so you can go topless and it’s not a big deal.
Aniela McGuinness: Completely. And it’s funny ‘cause it ended up getting picked up, the photo series got picked up by a lot of different news organizations, so it ended up in, like, the Daily Mail and Buzz Feed, Huffington Post, Cosmo, a bunch of places like that. And some were really cool and actually posted the before photo uncensored, but a lot of them censored it.
And it became its own issue in the comment section where people were pissed that it was censored. Like, “This is ridiculous that you would censor the pre-breast and not censor the post breast.” Just the hypocrisy… It was glaring in that moment. I thought that was kind of fun.
Jamie DePolo: That’s your little dig at society.
Aniela McGuinness: Yeah. Like, come on guys. There’s nothing wrong with boobs. We should not be shaming women…
Jamie DePolo: Or more specifically, nipples.
Aniela McGuinness: Yes. They’re just the stick-on nipples.
Jamie DePolo: Yeah, that’s the problem. So throughout all this, it’s really good to see that you have not lost your sense of humor. And clearly, that’s one of the things that you said helped you get you through this. You said before that you didn’t want people to think you were being flip. With the humor, does that ever happen? I mean clearly it helps you a lot.
Aniela McGuinness: I think there’s a certain part where we think people are going to react a certain way and they don’t. Where I didn’t know people would think I was being flippant, and come to find out actually the comments and response from everyone has been wonderful. I think I’ve had two negative comments in the entire thing. The photo series has been viewed by over a million people by this point, and I’ve had two negative comments.
Jamie DePolo: That’s pretty incredible.
Aniela McGuinness: Which is incredible for the Internet. I’m very proud of the Internet.
Jamie DePolo: Yay, Internet!
Aniela McGuinness: Yay, Internet! So where I thought people might find it to be flippant, I come to find out a lot of the responses are actually women who are going through this were saying, “Thank you. THANK you.” They wanted humor. They wanted to be allowed to laugh, and there’s a part where we almost are too scared to laugh at this, like we’re not supposed to. [Whispering] This is a serious topic. It’s cancer. We’re not allowed to make fun of cancer. It’s like, “Yeah, we are! Yes, we are. And it feels good to laugh at cancer.”
So yes, I come to found out my worry about being flippant, nobody cared.
Jamie DePolo: That’s great. Well, like you said, too, I keep going back to the mannequin photo. That has to feel funny and weird and you have to kind of laugh at yourself with no hair and giant boobs, and obviously it’s a phase and it’s not going to be like that forever, but it is kind of funny when it’s happening.
Aniela McGuinness: It is. And the amount of things that I realized I looked like, like, Halloween is coming up and this is the best time of year for cancer patients and chemo patients. Like, embrace it, oh, my gosh! You’re going to get no other chance like Halloween to just dig it, I mean, just go all out, especially as a woman! I mean, the things you can do! I saw one woman dressed as Breaking Bad! She did a goatee and the hat! And I was like, “Oh, my gosh! This is brilliant!” The level of joy you could have for Halloween of just sticking it to cancer is like no other.
Jamie DePolo: So what are you going to be for Halloween this year?
Aniela McGuinness: I’m going to be… I’m Furiosa from Mad Max because I have the buzz cut now, and so I made the mechanical arm, but my pièce de résistance for the entire thing was, I ended up getting an LED strip and I got a bra from the thrift store, and I cut out the front cup of it and I attached in the LED strip and it has a remote to make it flash. And so I’m going to have the one breast exposed -- I have no nipples and I can’t be cited for it -- and I’m going to put it on flashing mode so the entire thing lights… Like my entire breast lights up and glows while the other arm is a mechanical arm so it just looks like some weird robot. I’m goin’ all out. Who’s going to say anything to me? I had cancer.
Jamie DePolo: Right. Are you going to post this? I can’t wait to see it.
Aniela McGuinness: Yeah, it’s going to be on Instagram. It’s happening tomorrow night. I’m dressing up tomorrow night, so if this posts later, it’s October 30 I am dressing up, and if you go to my Instagram @anielamcg you can actually see my light-up single-boobed Furiosa.
Jamie DePolo: I love it! I’m going to be there. I’m definitely going to be there. So to close out, tell us a little bit… You’ve got a one-woman show that you basically are sticking it to cancer. Now, I know you’re based in Florida, correct? And so are you going beyond Florida with this show? Where are we with that?
Aniela McGuinness: I filmed it and am in the process of making it into… I’m calling it a documentary just because I don’t know what else to call it. Maybe it’s a docudramedy.
Jamie DePolo: You can come up with a new word. I think that’s…
Aniela McGuinness: It’s a docudramedy. It is the one-woman show, which includes a lot of footage from my process, and then this live show, which is about an hour long, that we are in the process of editing together to allow that now to live on its own so it can go to other states and it can go to other people. It can go inside your home, and I don’t have to keep playing cancer. So that’s we’re in the process of right now.
We’re in the process of editing it, fundraising, further editing of it, and just one step at a time figuring out… I have no idea what I’m doing. At all. I have NO idea. And I figure one step at a time we’ll figure it out and get that out to people so they can see it. I mean, I play cancer in it. I play everybody, but at one point, like, cancer and I are talking to each other and cancer is like, “Heeeey, how you doin’? I’m doin’ good.”
Jamie DePolo: Cancer is an old guy from Brooklyn or someplace.
Aniela McGuinness: Yeah, exactly. He likes titties.
Jamie DePolo: Nice. Very nice. So there’s no, like… You don’t even have an estimated completion date for the editing or anything like that?
Aniela McGuinness: I was hoping to do the end of the year. But I have realized that you could have things done fast, cheap, or good, and you only get two of those. And since I got no money, which is why we’re fundraising -- and I want it to be good -- so we are on the good and cheap, which makes it slow.
Jamie DePolo: Got it. Got it. Which is absolutely fine.
Aniela McGuinness: If we got money, it’ll be FAST and good. And you guys gonna get it faster. Otherwise… Probably next year.
Jamie DePolo: Okay. Well, that’s awesome! Well, Aniela, thank you so much for talking to us today. I really appreciate it. I have probably 500 more questions that I would want to talk to you about, so I’m hoping we get you to come back, perhaps at the end of the year if the show is close to coming out, that would be great.
Again, we’re talking to Aniela McGuinness. She has a blog called My Breast Choice, and you can find it online at www.mybreastchoiceshow.com. She’s also on Instagram as she says, so if anybody out there is looking for a Halloween costume, definitely check out her Instagram page. Again, Aniela, thank you so much.
Aniela McGuinness: Thank you.