IBC Can’t Stop Me From Living This Life

[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.

About 1-5 percent of breast cancers in the U.S are Inflammatory Breast Cancer.  This is an aggressive form of breast cancer, with signs that tend to arise quickly, often within weeks or months. The main symptoms of IBC are swelling and redness in the breast, and IBC can be hard to see on a mammogram because it may only show up as a sign of inflammation. Because of this and the frequent lack of a breast lump, IBC may first be mistaken for an infection or mastitis.  Today’s guest today is Amy Capello.  Amy was diagnosed with Stage 3 IBC at the age of 38 and is here to help educate us on this rare disease in hopes that it can help other women to recognize it more quickly, and to share her refreshing perspective on life since her diagnosis. Amy, welcome to the show!

Well, so nice to have you, um, our guests can’t see but you’re in this nice sunny room and you have a great smile.

So I know this is going to be an amazing conversation. So let’s start with your story. What can you tell us about your initial diagnosis with breast cancer and what was going on in your life around that time?

[00:01:24] Amy Capello: Yeah, absolutely. So I was six months into a new marriage, a second marriage. Um, and so we were blending families that comes with all kinds of like normal stress that one might expect.

Um, but life was good. I was healthy. I had actually just had a physical. A few months before my diagnosis, she said I had the body of a teenager, like everything on the inside, looked good. I probably could have lost a few pounds, but other than that, like, everything was great. And, um, I did start having some, um, some signs and symptoms that something wasn’t right.

Um, but I was very dismissive of them and, um, just kinda kept putting them off, you know, I really didn’t think too much about it. Um, Not to be a little TMI, but they would always, sometimes it would peak around my cycle every month. So we just kind of chalked it up to like premenstrual symptoms and, you know, that was what it was, it was never a constant like issue or constant pain or anything that had me feeling like I needed to run to a doctor right away.

[00:02:30] Adam Walker: So. So you had that issue. It’s recurring. I mean, what, what happened next? What led you to go to the doctor? What led to that diagnosis?

[00:02:40] Amy Capello: Yeah, absolutely. So I, um, I was having sharp shooting pains. So, um, for women that have breastfed before, it felt like a letdown, like when the milk fills those ducts right before you nurse and it’s.

Sharp shooting pain. Um, we’re often taught that cancer is not painful. So I kind of automatically wrote off it being anything cancerous because there was pain associated with my symptoms. My breast also felt very heavy, but I, when you Google inflammatory breast cancer, you see these really graphic images.

And like the breast is like double or triple the size and it’s red and it has this orange peel skin and it looks wful. Like, it looks like it might fall of your body. It looks terrible. And that’s not what my look like. So, um, you know, we’re taught not to Google our symptoms and not to listen to what Dr.Google says.

And, um, mine didn’t look like the pictures anyway. Even though inflammatory breast cancer kept coming up on the Google searches, it didn’t look like that. Um, so my husband is a nurse, so he felt around for lumps because that’s what we’re taught. Right? All women were taught to look for a lump every month, check for a lump, and he didn’t feel any.

Um, he even checked my lymph nodes in my armpit and my clavicle didn’t feel anything there. So we were pretty confident that everything was okay. I had at my annual pap, that was coming up soon. I was just going to talk to my OB when I went in. Well, um, my husband, it was, this was right at the height of COVID.

So this is March, 2020. I actually went on a solo trip down to Mexico. Um, one of my life goals is to see all of a sudden one. The world, and that was number five to go to Geneva. So I was down there by myself. Having a blast, came home the world kind of shut down right after that. And my husband got let go from the hospital.

Because they were closing everything down just to focus on COVID. So, um, we’re in Savannah and he ended up going to a hospital in New York to help out with the crisis up there. So I’m all alone and my symptoms are getting more persistent. And, but again, it’s never this constant pain. It was just these, these random sharps you’d be like, oh God, that hurt.

But yeah. It would go and come. And so, um, I was just really dismissive, but my husband said, please make this appointment, just call her. See if you can get an earlier. So, um, I called them and I said, I don’t want to be an alarmist. I mean, you know, as a female, like we, we just kinda like downplay, right? Like we’re like how they would give a deal.

It’s fine. I’ve got a life to run. Like, it’s fine. It’s fine. And she was like, can you be here tomorrow? That was a little like, oh, okay. Um, so I went in the next day and, um, the doctor that I see here, her name is Dr. Lynn fight sheet. Highly sought after. She’s incredible. She is wildly talented, listened to her patients and it’s just wonderful.

And she said, I think you have messed up. The mastitis would be an infection in that docs. And, um, I now know on the side of my story, that that’s what most IVC patients here, what didn’t make sense to me at the time was that I had not nursed for seven years almost. And so I’m like, well, have really strange, you know, if I suddenly had this infection on my breasts seven years after.

She’s the professional, whatever Cole. Um, and so she said, and she felt, she felt no lumps. She felt nothing in my lymph nodes. And I think my clavicle don’t think my armpit and think in my breasts, she didn’t even see any redness or orange peeled skin that is pretty indicative of IBC as well. So she said, I really think this is an internal infection.

It may be an abscess, but I really feel like it’s mastitis. Here’s a 10 day course of antibiotics, whether or not you feel better come back. Well, I was convinced it was an infection. So on the 10 day course of antibiotics, I wasn’t really feeling any better, but you know, the placebo effect, you’re like, I’m sure I just haven’t given it long enough.

Like, I’m sure it’s going to get better. It’s fine. But she was so adamant that no matter what I come back in, so I came back in and she talked to me again. Still didn’t feel any limes. Huge and red there’s no orange field stand. There’s none of that classic IBC. And she said, I’m going to get you in for a mammogram and ultrasound.

And I want to say that this is a really pivotal moment for me in my journey, because I’ve met so many women, several of them locally in Savannah who have since been diagnosed with IBC since I was, and their doctors wouldn’t do this for them, they just said, I don’t know what it is. Go home. My doctor is saying, you’re getting that mammogram and ultrasound literally saved my life.

And a lot of times it doesn’t show up on a mammogram or an ultrasound, but it was the first step in that process. Right. I actually asked her not. Believe it or not. I said, I haven’t met my deductible yet on my insurance this year dollars to go do like, wait, can we see? And I remember sitting there topless and she was staring at my tests and she said, I really don’t think that it’s this incredibly rare breast cancer called inflammatory breast cancer.

I don’t want to scare you. And I don’t think that’s what it is, but if it is, you cannot wait. All right. So I rolled my eyes, literally rolled my eyes and my doctor went in, got the mammogram and ultrasound, and I should’ve known something was out when the technician said, don’t get your results today. I should have known cause that never happened.

Um, but it wasn’t until I was laying on that table in the dark room and she had the ultrasound on my armpit and I said, cause we’d done a mammogram. He said, Did he see something in my armpit because it went back to the radiologist to read and she said she wasn’t gonna lie to me, you know? Yeah. So I looked up over my shoulder at the screen and if this is the width of the screen, there was a black circle, the width of the screen, it was just this big black void in the center of it.

That’s why I knew something was going on. Um, so the doctor came in and he said, you have cancer, and this is another moment. Sorry.

I’m so freaking lucky. Like I’m so lucky. Because so many women, it doesn’t show up on those scans. So they get this, they have this pain, they have all this stuff going on and their doctors, I have a friend right now. She’s currently having all the symptoms I was having. She’s had two mammograms, two ultrasounds, and the last doctor literally said, I don’t know, come back when you’re 40 and shrugged his shoulders.

Because there’s nothing showing up and she’s in immense pain, it hurts to get dressed. She can’t hold her son. She’s a single mother and alone through this. And I am so lucky that mine showed up. It showed up on the scans. So, um, immediately. He took nine biopsies for in my breasts, there actually was a lump, but I had tripled east.

So it was really deep and we couldn’t pop in it. Um, and then five in that lymph node, the lymph node was three centimeters long. It was huge, but it was so deep in my tissue. None of us could feel it. So, um, at the time he told me it was invasive ductal carcinoma, and I didn’t understand the difference between IDC and IBC.

So I actually felt a really big sense of relief because it was invasive ductal carcinoma and not inflammatory breast care. I now know that inflammatory breast cancer is not its own unique, pathological cancer. It is invasive ductal carcinoma. I didn’t realize that what happens is those cancer cells break out.

They get into lymph tissue of your breast. So instead of just the cells isolated into a tumor where you could do like a lumpectomy or something like that, The cells are pervasive throughout the breast tissue and that clogs all of those vessels causing inflammation, causing swelling, causing that puckering of the skin that looks like orange fields skin.

So IBC is actually a clinical diagnosis based on the way that your breast appears with the cancer inside. So I went home, at least thinking that I didn’t have IBC even that day, even though I knew I had cancer, it wasn’t inflammatory. Um, fast forward a little bit. We had the pathology run. Um, I got assigned an oncologist and I went to that appointment and found out that an impact was inflammatory breast cancer based on the presentation of symptoms.

Um, so unfortunately my husband again was in New York, so it was completely alone. Um, during this, this moment, And this dark room and, um, he’s a nurse. He was in this massive crisis situation. Lots of folks were going through COVID. People were dying. I could not message him and say, Hey, B2, dives got my results back.

I’ve got cancer. Talk to you on your lunch break, you know, out of the respect for the patients that he was caring for, I had to lie to him all day. Um, so he asked, how did everything go? Oh, it’s fine. Can you talk on lunch today? And I said, I’m so busy with work. I’m not going to be able to do babe. I’m so sorry.

I’ll have to talk to you later tonight. So my mom drove down from Atlanta. I. Found some people that I had known who had breast cancer previously reached out to them. So they found out before my husband. Um, and that night I told him over FaceTime. Um, so it was very difficult. And, um, he actually had a patient that he was very invested in up there that was critical.

Um, and he stayed up there two more days to try and, um, transition out with her family because they were very dedicated to. And he was dedicated to them. So, um, he stayed for a couple more days, but then even coming home again, it’s the head of COVID you had to quarantine for 10 days, then there’s testing center was four hours away in Atlanta.

Is there, he had to drive all the way to Atlanta to take a rapid test after his shindig quarantine, just to be able to come back and be with me, it was a whole hot mess. So it was all kind of a flurry after that. Um, My husband pushing me to go and my doctor not giving up on the fact that I had symptoms and then just luck of the draw, that there was a deeply embedded tumor that showed up on the mammogram really gave me, um, a lot of opportunity and chances and a lot of luck that a lot of women don’t get when they go through an IVC diagnosis.

[00:13:17] Adam Walker: There were a couple of things that you said in your story that really struck me. You know, one is, you talked about how lucky you were, right? Um, A lot of people in your situation might not be able to see that perspective. But I think it’s, I think it’s a really important perspective, right? Because to your point, um, your doctor could have shrugged it off and said, oh no, no, it’s nothing, you know, come back later.

And then that would have been terrible for you. And then, but then, and then also it just strikes me that you had the presence of. To care for your husband’s patients enough to delay talking to him? Well, I mean, that’s just, wow. Like that is, uh, that is a level of self sacrifice that I, I don’t know that I can imagine.

[00:13:59] Amy Capello: Thank you. It’s it comes from his, I knew how dedicated he was to them and I, there was no way that I could interrupt that. There’s just, yeah.

[00:14:08] Adam Walker: Wow. I mean, it feels like when you get that diagnosis, Th the reaction would be for most people that the whole world now revolves around you and you were somehow able to fight that.

And I really admire that. That’s a, that’s a really admirable quality that you have there. Um, so, so you went through treatment. It was during COVID. Incredibly difficult. Where are you at now? What was the treatment like and sort of where you at today?

[00:14:38] Amy Capello: Yeah, absolutely. So, um, inflammatory breast cancer is only staged in three and four.

So by the nature of the cancer, being that it has proliferated into the breast tissue, it automatically becomes stage three. So there is no zero one and two. So it has its own, um, standard treatment. Plan that you have to get, or you don’t have to, everybody has their own choice, but that is recommended. Um, and that is what’s called a tri modal treatment.

So you do neoadjuvant chemo, which means you do that before a mastectomy that’s different than most breast cancers. Um, the idea is that the cancer has gotten so widespread in your body, um, that you want to contain that. Now, instead of, you know, doing surgery four weeks healing from surgery, then you start chemo.

If it has gotten into other parts of your body, even if they weren’t registered on a scan, you want to get that under control as fast as possible. So, um, within about a week and a half of diagnosis, I had my port, I still have my port end. Um, got a flush last week. Um, and I started chemo 15 hours after my port.

So, um, I walked upstairs and. You, um, because of COVID, no one was even allowed in the building much less the doctor’s office. So this was my first time meeting my oncologist. Um, I had to do a FaceTime call from the doctor’s office. So, um, it was a solid, a little bit over a year after my treatment, after treatment finished.

Um, before my husband ever met my oncologist and person. Okay. With FaceTime. Um, and so I had my chemo bag, of course I’ve just had surgery. So like, it really shouldn’t be carrying anything, but I’ve got my blanket and all this stuff I need. Right. And I’m sobbing by just tears and snot everywhere. And I’m walking up and my friend got me a bag that said chemo stuff, you know, I’m walking out with my chemo stuff bag and I’m ready.

And, um, so they access my port. Um, and I just sat there and cried the whole time. You know what I mean? You just kinda gotta roll with it. Like, what else are you gonna, um, unfortunately cancer is not one of those diagnoses where you can say, I’m going to wait and see what I think about this. I’m not really sure.

Um, you kinda just gotta jump in. So. I did four months of what’s called dose dense chemo. Um, so that is every two weeks instead of every three. Um, I did AC, which is, um, often called the red devil and then Taxol, um, Throughout my entire journey. I decided that, um, I needed a need, it, it wasn’t like a fluffy little, like I’m gonna make something pretty out of this little pile of poo.

I needed to reframe things in a positive. So all of these women. We’re getting AC chemo. They’re talking about the red devil. I’m getting the red devil and go like, oh, I’ll be darned. If I’m going to have something called the devil, put into my body, anybody religious beliefs are, the devil is not going into my body period in a story.

So I reframed that to something that was more positive for me. I, I do consider myself a Christian though. I told myself this was the blood of Christ that I was going to put into my body and it had healing properties, you know? So no matter what it is that you can reframe it to you, it felt better getting it.

Thinking that this was something that was helping me instead of something toxic or poisonous that was going into my body. And then the tag fall is clear. So I called that living water. So to me, it was just this water that was being infused into my body that was giving me life. It was just living water.

Um, so. That’s how I kind of made it through chemo. We had a big hair shaving party in this room and the sunroom and, um, my son was six at the time of diagnosis. So he helped shave my head. Um, he later told me that he didn’t think I was serious, that we were going to shave mommy’s head. I had hair all the way down my back and he said, but also, I didn’t think people would joke about that.

Mommy. I said, bill, we weren’t joking about that. So I did four months ago. Um, that was followed by a double mastectomy. Um, the standard protocol is a single, but because my grandmother had had breast cancer in her eighties, they went ahead and approved a double. I do not have any genetics. It all came back negative.

But, um, I didn’t want to go through another surgery later on. Um, and the only reason that they recommend a single is because, um, they it’s the risk of infection. They don’t want to delay radiation. So it’s not that they really care whether or not that one’s there, they just don’t want to increase the risk of infection.

Um, so with my husband being a nurse, I felt like we were pretty safe to have a. You know, a good sterile environment for me to heal in. So the type of mastectomy that we are required to have by the protocol is called a, um, let me get this right. It is a non as a modified radical non-skid spearing for me, a double mastectomy.

Um, so because the cancer is all in the tissue, um, they take everything. So we are actually not eligible for. So initially I was trying to make light of the situation, say, and I’d have the best looking rack of any 40 year old out there. You know, I’m not the case. You’re not able to get implants. Um, and they go so deep and they take so much that they actually scrape the muscle fascia off your neck for a muscle.

Um, so in my decision making process, around my mastectomy, I decided to stay flat. Which has actually been a really big part of my journey. Um, we are eligible to get what’s called a deep flap where they take the stomach tissue. So you kind of get a tummy tuck and they make, um, breast mounds out of that shoe.

Um, but it’s a very invasive surgery. I know women who have gotten it. They would do it again. Um, I just don’t want to go through any more surgeries. So I’ve decided to stay flat. Um, after that I had 32 rounds of radiation. Um, 18 of those were with a bolus. They put this silicone thing and it actually intensifies the beam.

Um, but my radiation oncologist said. I apologize, but my goal here is to burn you. It’s in the skin. IBC is in that tissue. I have to burn you. Um, so I had 18 with the bolus, um, but I made it through that. I did the six months of oral chemo after that. And because my. Kids or was hormone positive. I am now on hormone treatments that put me in menopause and also caused a lot of weight gain.

So I’ve gained like 60 pounds in the last, you know, not even quite a year, yet July will be a year, um, just from being on the hormone treatments. So, um, that’s kind of where I am, but April 22nd will be my two year cancerversary and knock on everything wooden in this room. I’m currently no evidence of disease and.

Not going to win again.

[00:21:31] Adam Walker: I’ll knock on wood with you here for that, for sure. So it strikes me that a couple of things, right. First you’ve just been through a tremendous amount. I mean, not just the cancer and all of the cancer treatments and the radiations and the chemotherapies and the surgeries and everything else.

But then you did all of, all of that during. Um, which is profoundly hard while also being a parent and having a new marriage. So, uh, you know, um, and it also strikes me that, uh, that you have a very unique perspective in a, in a unique level of, of self-awareness, like I mentioned earlier. And so I just, I just wonder.

Um, you talked about reframing your thinking, um, about the, about the drugs and the medicines, the chemo, the chemo in particular, I’m wondering, could you share just a little bit more about, about how you keep that positive perspective and sort of how you, how do you go about your day? Like, even on a daily basis, how do you, how do you keep that positive

[00:22:28] Amy Capello: perspective?

I think. Genuinely deepen my soul. Believe in toxic positivity. There is such a thing as like forcing this positive, like, oh, I’ve got cancer, but I’m going have to find the good in it. You know, like ironically and a little, a little bit backwards. I almost think I was able to stay positive because I acknowledge the negative.

Like it didn’t try to force it away. I didn’t try to say, well, this really sucks, but let me find the silver lining. Like I had the days and the times and the hour by hour moments of this really socks. Like I didn’t ask for this. I was living a healthy life. I was eating right. I was not exercising, but probably should have been.

Yeah. I was doing things that were decent, you know, and. I, I don’t deserve this at 38 years old with a six-year-old son and a new marriage, but I mean, who does deserve cancer? So I sat with the ugly. And I sat with the hard and I sat with the sadness and I sat with anger too. Right. Like I, I definitely felt that, um, and acknowledging it for where it was and what it was and experiencing those emotions.

Instead of saying, I shouldn’t be sad. I should be thankful that no, like I should be sad. This really does suck. Okay. So having knowledge that now what good is there in my day to day? What good is there in my life? I have my mom here at my dad here. I have a husband, who’s a nurse. Like obviously he was brought into my life at the right time for a reason.

Right. You know, and like I have good. I remember, um, I never got insurance to approve a pet scan and they wouldn’t still, to this day, they never approved a pet scan. And I created a little Facebook group to keep up with people because texting everybody was wildly impossible. And my son’s preschool assistant manager texted me privately and said, I’ll pay for it out of pocket.

If you need me, I lost. I was a sobbing mess hiding from my son and my bedroom. And my mom came in there and I, I cried and I said, I was, I was built to fight cancer. I wasn’t built to receive help. Like that for me was a really big journey. But knowing that I had that support, knowing that I had people loving on me, knowing that I had neighbors bringing me food and people cutting my grass and a job that allowed me the flexibility to be sick and turn off my camera during I worked remotely, you know, all of those things supported me.

They needed it to be acknowledged in the same way that the ugly needed to be acknowledged. There was space for both of them. And I held space for both of them. So when I was in treatment and getting chemo and, and even honestly with radiation, um, I was laying there on this machine and you’re in there for 15 minutes.

You’re alone in this room and you’re staring at the ceiling tiles that are above you. And so I’m just laying there and I thought, okay, I don’t like this. So what can I do to make it better? Because I have to be here. I can’t not be here. So what can I do to make it better? So they would play songs from. So I’m picked the most ironic songs I could find.

So like Johnny Cash is ring of fire. I’m going to get burned. We’re going to burn, you know, whatever I can do to find the humor in it, you know? And I would visualize, cause you don’t really see anything in a radiation machine. But I knew that things were coming down in my body, even though I can’t see them just like, I can’t see the cancer, but I know it’s there.

Right. So I, my favorite color is purple. So I envisioned little tiny purple flowers coming down and kissing my skin and popping cancer cells. And that’s what I imagined. Cause I got to lay here anyways. So what can I do to make it more tolerable and less miserable? Um, And I actually had a really fantastic radiation oncologist, um, had the idea to paint the ceiling tiles.

I’m like, listen, I don’t think you’ve ever laid in that machine before. It kind of, I want something to look at. And he was a trooper and he went all the way up to the heads of the hospital. They approved it. And on my very last day of radiation treatment, we had a paint party. They got me boxes and boxes of ceiling tiles.

And we met my front yard and we all painted. Pictures and quotes and whatever. I like squirrels that painted this world. And now they’re up in the radiation room. And even though I never got to lay there with them, other people behind me did, and they’re still getting to enjoy it. So like where can I find and hold space for the good in the

[00:27:08] Adam Walker: terrible.

Wow. That’s um, that’s just fantastic. So, so you said. I’m built to fight cancer. I not built to receive help, but then you also said that you had people helping mow your grass and other things. So I guess as my last question, I really like to know how did you overcome that? Because a lot of our listeners, a lot of, a lot of cancer patients in general really do struggle with accepting.

How did you get to the point where you can do that?

[00:27:35] Amy Capello: Right. So I, about a month or so into my journey decided that, um, I wasn’t fighting cancer and that was huge for me because we hear that all the time that people are fighting cancer and, um, you know, she’s fighting. Then we also hear if they pass away that they lost their battle through that.

Like, so, um, for me, I called it my journey. And this is my journey. Um, and to totally go nerd on you. Um, I really love that movie marijuana and I like, I just she’s great. And so I imagined in my head that my cancer was almost like this angry lava monster at the end that, you know, she doesn’t fight it.

Right. She doesn’t have a weapon. She’s not bloodied and bruised. She doesn’t have scars. She’s not screaming. She’s not. She very gently and quietly walks up to it and literally looks at eye to eye and says, okay, we’re not doing this. And that’s the vibe that I wanted as I faced it. So in calling it a journey and then not fighting, I was able to embrace the lessons that I needed to learn through that journey.

And one of those was receiving help. I really, really sucked at that. So I decided to take this as an opportunity to. Level up if you want to call that, right? Like, but take away, what can I take away? Because I refuse to let cancer steal something from me. I, I re I refuse it will not under any circumstances, take something from me other than my breasts.

It will not take anything that spirit or that soul, in fact, I’m going to take it the opposite direction. I’m going to learn something from it. I’m going to learn to receive help. And it was, it was not fun. I had a go fund me set up and I was like, you will not. And they did it anyways. And then people leaving food on the doorstep and I was like, you don’t have to in the light, but we’re going to anyway.

So I don’t say I went into it, you know, with rainbows, Indiana cards. Like I fought that lesson to the nail. Um, but the more that I was loved on, I realized that I had more capacity to give. The more that I was open to receiving as well in the right time and in the right place. And so I made that part of my own lesson and part of my journey.

[00:29:48] Adam Walker: Wow. That’s an important part of your journey and it’s an important part for all of us to remember that in times of hardship we can receive help. Okay. Well, Amy, your story is profound. Your attitude is amazing. Your perspective is just fantastic. And, uh, thank you for joining me on the show today. I really appreciate it.

[00:30:09] Adam Walker: Thanks for listening to real pink, a weekly podcast by Susan G Komen for more episodes, visit real pink.com and.org 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 AGA Walker or my blog, Adam J walker.com.