Up this week we sat down with previvor Laura, as she explained to us her inspiring story of her failed diep flap surgery, which led her to get implant reconstruction surgery. You might recognize Laura from our website, as she was one of the models from our most recent photoshoot. Read along to learn all about her diagnosis, journey and how she found her way to AnaOno and joining the Never Alone Community.
Bianca
“Tell me a bit about your journey.”
Laura
“I went in to get a mammogram because my mom was diagnosed with breast cancer and her mom also had it and like everyone in my family has had cancer, so I figured I should get checked out. When I was there, they told me that they saw 12 spots and that I needed to come back every four weeks to be monitored, you know, until they could call it cancer or I could just get it taken care of now. I decided to go with option two, making me a previvor. So, yeah, mammograms are awful and I didn't want to wait. We thought maybe it was a genetic mutation so my mom did the BRCA test and that was negative but that's only one out of like 30 of potential breast cancer genes. Clearly, we have a breast cancer gene, it's just not the specific BRCA one.”
Bianca
“How did you feel when you found out that you needed to get a mastectomy?”
Laura
“I wasn’t traumatized or anything. It just kind of seemed like a doctor's appointment I needed to go take care of you know. Like if someone told me I had a cavity in my tooth or something, I had no idea that it would almost kill me; I thought it would be a quick one and done. My mom just went in and got a mastectomy, got implants right away and she's done with it - she still hasn’t had any problems at all. No revisions or anything. She was just one and done. Mine was a totally different story.”
Bianca
“Can you tell me a little bit about your surgery journey?”
Laura
“In January I went in for the Diep flap surgery; I had plenty to work with because I gave birth to full term twins. So, a lot of extra skin. Within like, six days, I wasn’t doing well. My skin was getting really purple and angry looking and I was feeling horrible. I was shaking and had the cold sweats and I had a fever that was really high. My discharge instructions said if you have a fever that's this high, you should call your doctor and go in. So, I called my doctor and he was like, you're fine. I'm like, I kinda think I'm dying actually. I was right. I went to the doctor’s office anyway. His nurse told me, yeah, you need to go like now. So I went to the emergency room and they told me I was in septic shock and that my organs were shutting down.
They started pumping me full of drugs and everything but they didn’t know that I had a condition called pyoderma gangrenosum; which is sometimes triggered by people that have ulcerative colitis, which I have. And so, when you're dealing with that, there are specific things you're supposed to do to treat it. My surgeon chose to just remove all of the skin because he thought it was like gang green or something. My skin was very red and angry and purple looking and he thought that all the skin was dying and that it was spreading, and that's really not what was happening, but they didn't know that at the time. So they ended up removing all of the skin on my chest.
So I was just like hamburger meat. I spent 10 days in the ICU after that. That was after I did three days initially for the first Diep. They sent a wound care person to my house, but I still had to go to the hospital every day to do hyperbaric treatments, which is where they put you in this glass tube and pump it full of pure oxygen and force you to watch HGTV for hours. It was awful.
I did six months of hyperbaric treatments. I started off daily and then after a couple weeks I went down to every two days and then I did every week and yeah, it was a long process. So then I got to the point where I just had mostly scabbing and that I could deal with on my own. So, it was probably a good year and a half before I had full coverage of a super thin layer of skin. It was so thin, even getting in the car and putting my seat belt on - just the seat belt rubbing against me just sheared off that skin and I’d have to grow it all back again. So it was a nightmare. So, I had to create some hard shells for my boobs. It was like a knight in shining armor kind of thing.”
Bianca
“What made you decide to try to go with diep flap (the first time)”
Laura
“I liked the idea of just having my own tissue and it's what the surgeon recommended to me. Because I had so much tissue to work with, I thought it would be an easy one and done, but that wasn't true because after all of that since I was so sick afterwards, my weight kept going up and down, which meant that my breast kept deflating and losing everything that was in there. So, I was pretty flat for a while.There was a little bit there, but it was pretty flat and so I'd go in for a fill and they would suck some from my thighs or my hips or whatever. Then, within like, a year or so I'd lose weight again or it would just absorb and I'd be flat again. So after like seven times of that, I finally went with implants just so I could have a more consistent chest. So I've had eight total reconstructions.”
Bianca
“What was the most difficult part about your recovery?”
Laura
“Growing skin and learning how to bathe. People have contacted me on Instagram that are going through the same thing where their skin all died and now they just have open wounds and like, oh my gosh. let it dry. Let it dry. Forever. The wound care people were like you need to keep it moist and it needs to stay you know, hydrated or whatever but the scabs would never just build the skin. It was just always like this wet gooey grossness. As soon as I tried something new after about nine months or something and I just let it scab over and dry out…that's when I started healing. So I try to tell people this and a lot of people are still really skeptical of it but it's what worked for me.”
Bianca
“What advice would you give to someone who is having complications and their journey isn’t going as planned?”
Laura
“When you have complications it’s kind of like a detour for your whole mastectomy journey. I didn't know what to research at the time, but obviously, that's what you want to look into. Many people have been contacting me on instagram and I always ask if they have ulcerative colitis or other things, because if you do, you need to tell your doctor ahead of time so they can give you the best type of treatment for you. If you have complications and they don't know what's going on, now's the time to tell them literally everything about you.
I was so angry at the time, when every time I'd go in to see a doctor, I’d hear, “I don't understand, you're young, you're healthy” but no… I've had a lot of health problems. I am not healthy and I'm not that young. So, that's what was irritating. I'm not young and healthy - I'm short and thin. That's pretty much it. So that's why you're assuming I'm healthy.
It's a rare thing. I wish I could be more of an advocate for it. I wish I could warn more people that before you make this huge decision as a previver… just find out everything because anything could happen, anything could go wrong. I wasn't prepared for that.”
Bianca
Well beyond surgery… has your relationship with your body changed and if so how?
Laura
“Yes. I would say. I mean it’s actually better now than before. Because before it was, you know, old mom boobs with a flabby stomach. So that part I didn't like. I mean, I think I would have liked to have had implants before, but this is not the way to get the free boob job that everyone talks about. This is not how I would have wanted to go about it. So I think now I'm kinder to my body than I was before. You don't really think about it when you're a teenager, you don't really care. You don't like it then, anyway, because there's always something wrong with it, but when you're a young mom, your body isn’t really for you; it's for your kids. And so, I guess there wasn't really any in between for me there. So, after all of this happened, it was my body, only for me. It wasn't going to affect anyone else. And so, I think I was a lot kinder to myself and taking care of myself and being an advocate for myself. More than I was before.”
Bianca
How has this impacted your relationship with your husband? And/or, your kids?
Laura
“Well, before all of this happened, my relationship with my husband was already strong. He did exactly what I expected he would do. I know he's always gonna step up and he did. He told me, “You know, this wasn't like me stepping into some hero role - they're my kids too. I told you in sickness and in health. I'm here.” He learned how to do all the wound care with me and I mean, yeah. He's seen “the girls” as part of me and he's still good.
I think, for my kids, it may have actually helped with their relationship with their own bodies because they can see that I'm a mess but I'm okay with it. That maybe they shouldn't be so hard on themselves. They also kind of like telling people that their mom is a model which is funny.
I also think that seeing how my husband handled everything was a really good thing for them to see. Because they can see, that's how your partner is supposed to be. I'm hoping that they will date someone that treats them as well as my husband.”
Bianca
“What did it mean to you to participate in our photoshoot?”
Laura
“Everything! I thought I was winning the lottery. I’m just like a normal 42-year-old mom, but being a part of the photoshoot made me feel so pretty and confident. I just drive the carpool, and I'm in the PTA, like, these don't things don't happen to normal Moms. I met some really great people and I made some friends. I think it also kind of gave me the confidence to just go ahead and start promoting myself a little bit more and giving myself permission to start modeling professionally.”
Bianca
“If you could describe AnaOno and what one word, what would that word be?”
Laura
“One word. I only get one?! There are a lot of words I would choose. I think the first one that comes to mind is comforting.
Another one would be beautiful, because that's how you feel in it and that's what I think AnaOno is trying to achieve with their bras. Not so much just utility, but beauty.”
