[00:00:00] Adam Walker: This podcast is brought to you by Exact Sciences, with a leading portfolio of products for earlier detection and treatment guidance. Exact Sciences helps people face the most challenging decisions with confidence.
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.
As with any major illness, breast cancer can have effects beyond the person that is diagnosed. When it happens family members and loved ones may feel many of the same emotions as the person with the diagnosis although they can never completely understand what it is like unless they have been there, and even then each diagnosis is almost like a snowflake – no two are exactly alike.
Since the overall median age at diagnosis for women in the U.S. is 63, it is often a child dealing with the illness of their parent and not the other way around. Today we are lucky to be joined by a mother-daughter duo who are here to share their story of support from a perspective that we haven’t explored much on this show.
In 2019, Adrienne Legault was diagnosed with breast cancer at the young age of 27 and her mom Debbie stepped into the role of caregiver. Here to share how they have navigated the myriad of emotions that the past few years has brought to their family are Debbie and Adrienne. Welcome to the show!
[00:01:24] Debbie Legault: Thank you for having us!
[00:01:25] Adam Walker: Well, I’m, uh, I’m very excited to have you today. I really appreciate the perspective that you’re going to bring.
Um, so. To get started. Adrienne, let’s start with you. Why don’t you tell us about your diagnosis and what it was like for you at that time?
[00:01:40] Adrienne Legault: Uh, okay. Um, if I could use a single word to sum it up, it would be blindsided. Um, I. I found the lump in, I want to say February. Um, and I was very fortunate, I guess, realistically, that my GP took me seriously sent me for all the appropriate tests and whatnot without me really needing to push.
Um, cause I know for young women that can definitely be an issue sometimes. Um, uh, along the way for all the tests, exams, pokes, prodding, um, it was never really indicated to me that it might be anything, you know, serious. It was always. You know, you’re, you’re too young. You’ll be fine. It’s a fibroadenoma, like at no point, did anybody sit down and talk about the possibility of it being a cancer?
So I, I kinda kept my mom updated along the way, but for the most part, it was, you know, I was reiterating that same message. It’s fine. It’s nothing. It’s nothing to worry about. Um, so when I, when I sat down opposite my thoracic surgeon on March 15th, 2019, and. It’s a little bit of cancer. I, there were no words that, you know, there was, there was nothing.
[00:02:59] Adrienne Legault: I was just like, okay, because what do you say to that? Um, and then I cried, like I started crying because that feels like a natural progression of events. Um, and then the first thought that kind of popped into my head weirdly enough was how do I tell my mom?.Um, because how do you tell your mother that her 27 year old daughter has breast cancer?
You know, like how, how do you, how do you share that message? Um, you know, especially with how close we were, like,
[00:03:34] Adrienne Legault: it was a lot, um, I, I managed to get through the paperwork, um, maybe a few tears on the paperwork, but I managed to get. Uh, the nurse was this absolutely lovely little old Scottish Scottish lady.
Um, she offered me a hug cause I needed a hug. So she, because it’s a big old hug. I absolutely love her to this day. Love seeing her. Um, I somehow managed to get myself home, not sure how, cause I probably really should not have been driving. Um, but I did manage to get myself home called my mom and uh, you know, the rest of the day from there was kind of a blur.
I kind of had to go over it in my head, you know, like I have cancer, I have cancer, I have cancer.
[00:04:18] Adam Walker: Hm, wow. And so, Debbie, I mean, I imagine that’s a, uh, a shock for you as well. So what, tell us what that moment’s like when Adrienne calls you and lets you know that she has cancer. And then I guess I’d also love to know like, is there any history of breast cancer in your family?
[00:04:35] Debbie Legault: Um, I think it’s the first time in my life that I can genuinely say. I think I went into shock. Um, everyone along the way in the testing phase had told Adrienne that it was this or that and all of districts. That’s where something benign. I am the think through all the possibilities. So you’re prepared person in my family.
And I think in a way, because I didn’t go there, Adrienne, didn’t go there. So it wasn’t a matter of denial. A lot of people might suggest that that’s where we were. It was more a certainty that women, her age didn’t get breast cancer. Um, and if there was no family history, which there isn’t, there’s no history of any cancer in my family, let alone breast cancer, other than a few exceptions.
And those exceptions happened when they were much older. So the genetic piece of it wasn’t anything that any of us had to consider. I actually would say that that’s one of my biggest regrets had anyone suggested to Adrienne that it might actually be cancer. It had that base that she should have that on her radar.
I would never have left her alone to face that appointment ever. Um, as it was within minutes of hearing the words, mom, it’s cancer, I popped open my computer to look for the next available flights to get to her. And then I threw up, um, apparently that’s my extreme stress. Um, then I called her dad. He came home and we started planning from there.
[00:05:55] Adam Walker: Wow. Well, I mean, I can only imagine how, uh, traumatic that, you know, that would be for, for both of you. Um, Adrienne Le let’s talk for a minute about your treatment. Um, what was your treatment and what it consists of and, and how hard was that?
[00:06:11] Adrienne Legault: Um, yeah, it was hard. Um, so I was diagnosed with stage two B triple positive invasive ductal carcinoma.
Uh, so I was, uh, both hormone positive, like the estrogen progesterone, and then I had what was called her two positive breast cancer. So it’s, um, it’s basically just a protein that. That the cancer uses to grow. Um, and they tend to be much more aggressive forms of cancer with the, her two positives. Um, uh, and then I also, um, as a result, I guess had some, some lymph node involvement, which is what put me under the stage two B.
So I, over the course of 14 months had three surgeries. Uh, five months of chemo, six weeks of radiation and a year of Herceptin, which was the targeted therapy specifically for the, her two positive. Um, yeah, it, it was tough for sure. Um, one of the chemo drugs that I was on wheat, uh, colloquially referred to as the red.
That’s this, this bright red color kind of like red jello, it’s weird. Um, but it is so toxic that the nurse has to wear several layers of protection and then they have to manually administer it, um, over the course of a half hour. And, and to, um, I had a port, so into my port, um, they can’t let the machine do it because if for whatever reason there’s an issue and it leaks, it can severely damage the.
Um, and they’re pumping that into my body. So you can only imagine what that’s doing on the inside, if it’s so toxic that so many precautions are being taken to prevent this from leaking. Um, I, you know, I, eating was a struggle if it was happening at all. Um, I couldn’t walk 20 minutes without being out of breath.
You know, I hit a point where even getting off the couch to go pee was, was really tough. Um, and even, you know, years later down the line, I’m, you know, I’m three years out of that now, and I’m still struggling with the side effects of that treatment. My body is still, you know, struggling to digest food properly or to sleep properly or, um,
Um, brain fogging right now, which is a side effect of chemo is, is the chemo brain. So it’s a, it was tough. I had a point where I couldn’t drive, you know, my, my brain was just so not there. I couldn’t drive. I bought a start dinner, um, or, you know, make myself some lunch and I’d walk away and forget. So, you know, thankfully my mom was there to make sure I didn’t burn down the house.
I also, um, I did end up with some more sort of long-term side effects. Like I don’t, I’ve got a compression sleeve on, cause I ended up with lymphedema on my affected side, which is very mild, but my arm definitely gets fatigued. Um, and that will be something that I will be dealing with for the rest of my life will be the lymphedema.
It’s a lifelong struggle there.
[00:09:23] Adam Walker: And, uh, yeah, it sounds, it sounds like a, like a lot, it’s a lot. It’s a lot. Yeah, well, uh, I appreciate you sharing that with us. And so Debbie, I’d love to know about your experience as well. I mean, were you able to be physically there as a caregiver and how were you able to stay strong when you’re watching your child go through this kind of struggle?
[00:09:42] Debbie Legault: Um, yes, I was there.
Um, I packed up my life into two big suitcases and slept in the living room of her one bedroom apartment for two. Um, one of the miraculous developments over the last several years is that air mattresses have gone into the realm of spectacular and I’m ever so grateful for that, because that was what my bed was in her living room.
Uh, the truth is I can’t imagine not being there. Um, it would be like having your breathe for me to be there, to support her. So, um, I feel very fortunate that I could make that decision without my worldwide. Um, um, I will be forever grateful for that. Um, a lot of people ask how I did it, and I think it’s really important to note that we went into this experience together on very high ground.
There was respect and trust going in. So there was nothing that her cancer diagnosis had to heal between us before I could step into the caregiving. Um, that being said, I’m not sure that staying strong was what I did as much as I maintained the status quo. So I didn’t let things go downhill is what it was.
Um, That’s a bit of a difference. I mean, I centered myself in the idea that this was her experience and that I was, um, a support staff in there. Um, luckily I know most of her tells poor thing. Like she can’t go anywhere together. Um, but I know most of her talents, so I was able to adjust my responses accordingly.
Um, looking back, I think there was just so much to do, like she’s talked about that 14. Um, taking her to chemo appointments, taking her to whatever ologists that you want to bring in there. The dermatologist, the oncologist, the cardiologists, the radiologists, it like we were constantly going somewhere. And I just focused on the actions that had taken.
I focused on the doing. And as a result of that, I pushed most of the emotions that I was feeling to the back burner. And didn’t really have an idea of the impact of what. Collectively experienced and, um, and what the impact was on my mental health until a lot later. Um, there were, there was a time that when the, when she talked about the red devil, um, she told me after the end of that first chemotherapy treatment, that she was very impressed that I didn’t react.
She was very impressed that I just kind of stood up. Um, our sat there. And the reality is that the voices were screaming so loudly in my head that this could not be happening to my baby, that I could not be sitting here watching that happen, that I just stared at the syringe. And I just stared at it.
That was kind of how, um, we did that. So. The one way I got the emotion out was to write it down. I don’t, um, know why it worked. I don’t know why it was helpful. And sometimes I would find things that came out of my fingers onto the screen, through the keyboard that I didn’t even know were there. And, uh, it was really helpful to me to see it, um, in black and white.
I mean, I’m air quoting this cause I can’t see on paper. Right. I’m old. It was very helpful for me to see it on the screen so that I can even understand for myself what I was going through. It was like sometimes standing in a corner, watching myself do things, um, as an observer, which was very interesting.
So the writing was very helpful when things started to overwhelm me, um, that, and m&ms, um, I somehow got into a habit of, um, going to bed included a bowl of M and M that I would munch on as I was settling myself in. Uh, I realized that I’m an Amazon had become a problem for me when one night at, I don’t know, between 10 30 and 11 o’clock.
Um, I thought I had some, I didn’t I got out of my pajamas, got into my clothes in a cold winter night and got into the car and drove to buy myself a bag of M and M’s because it wasn’t possible for me to sleep without them. So yeah, writing processing and M and M’s.
[00:13:38] Adam Walker: Wow. I really appreciate just the very real.
Uh, you know, perspective that you both have and you both just gave him one. This can be like, I mean, it’s. It’s profound. Um, it’s a D Debbie, I’m curious, how has your perspective about breast cancer changed since this happened? And how has your family been personally affected? Um,
[00:14:01] Debbie Legault: my perspective on cancer period has changed, um, since Adrienne’s diagnosis, not just in relationship to breast cancer.
I used to think it was a one and done. So you got diagnosed, you did treatment and you either succeeded in, you lived or it failed. Um, there was no narrative where you lived and had to deal with the fallout from the treatment. Um, the fear that comes with every ache and pain and. Uh, what it’s like to have to, um, respond to a telephone call from your daughter and take a deep breath and center yourself and make sure that you’re safe before you pick it up and say, hello.
Um, that’s not something that I would have anticipated. Um, I knew the Hollywood version of cancer in general, the Hollywood version of breast cancer. Um, but it’s so wrong. Like for example, how many times have we seen a fictional character? Who was bald. Right. But they still have all of their facial hair and their nose isn’t running constantly because the hair in your nose is gone too.
Like we see this romanticized, even though it looks terrible on the screen, it’s still romanticized. And that was what my experience was. Um, the other thing, in my perspective, specifically to breast cancer is that, um, which is very sad for me is that. Through, um, interactions with, uh, people in the cancer community, especially that, uh, young women do get cancer.
And a lot of them don’t find out that they have breast cancer, um, until it’s metastatic. So one of the things that I learned is, uh, or one things I read is a breast cancer. Doesn’t kill you if it stays in the breast. And I find it very frustrating to me that the face of cancer is still me and not my. Um, I’m not suggesting that it shouldn’t be me.
Of course it should. Um, you know, the likelihood of is one in eight of a woman getting breast cancer. So when I’m sitting in a room with eight people, it’s me or it’s one of them, but it could also be her and one of her peers. Right. Even though, even though it’s much rarer, it’s still there. And unfortunately I think there’s more and more of it.
And I, I would just, it just frustrates me and especially with. The comment that she made. Oh, you’re so young. It’s fine. It’s just, it’s going to be fine. A lot of women struggle. A lot of young women struggle to get their concerns taken seriously because of that attitude. I mean, she was my daughter, Adrienne was a learning opportunity for people that have been in the medical field for decades.
They had never seen somebody her age with breast cancer, so.
[00:16:34] Adam Walker: Wow. Yeah. I really appreciate you sharing. So internet now, a little bit removed from it. I’m just curious, you know, Adrienne, starting with you is cancer is something that you still think about daily, even though technically you don’t have evidence of the disease.
Like what, what role does it play in your life now?
[00:16:53] Adrienne Legault: Uh, a lot of roles, um, that, you know, like you said, even though I’m, I’m no evidence of disease at this point, technically. It’s still informs so many aspects of my life either directly or indirectly. Um, like I mentioned before, I’m still dealing with some of the side effects or, or, you know, long-term side effects even, or medication.
Um, one of the medications I’m still on. Is it’s called Tamoxifen and that’s to help with, uh, with the hormone positive breast cancer aspect. Um, the hormone positive aspect of the breast cancer, uh, to prevent a recurrence, which means I am a 30 year old and essentially forced menopause. Um, so, you know, my diet has to change.
My exercise level has to change. Everything has to shift. My weight has changed. Um, how my body distributes weight has changed. Um, You know, so there’s, there’s a lot of really tangible aspects of my life that are still very heavily informed by the cancer. Um, and there’s also indirect ones. I mean, like you mentioned earlier, um, you know, a cancer diagnosis and its treatments are very traumatic.
It’s a very traumatic experience. And so a lot of patients and survivors. Trauma responses. I mean, me in particular, I’m I find myself very hypervigilant all the time. I’m anxious all the time. Um, I want me and my therapist like to call catastrophize, you know, so when I bought, you know, an event coming up by, I tend to jump straight to the worst case scenario and I convinced myself that that’s a possibility because I had the worst case scenario.
To me in the past. So I always kind of make sure that I’m prepared for that. Um, you know, I have trouble sleeping, I get burned out more easily. And then even, even trying to make decisions about my future, you know, I, I want to have a kid and I know that there’s so many other steps involved with having a baby.
When you have the history of breast cancer, especially like a set of hormone, positive breast cancer. Um, you know, if I wanted to move, I have to make sure that I’m moving somewhere that has, uh, you know, at least access to a cancer center. Um, if I want to change jobs, I have to consider how many days off I still need for follow-ups and scans, et cetera.
So, so yeah, even though I don’t feel obviously like my, my day revolves around it anymore, but it’s definitely a part of my daily life. I thought it out.
[00:19:13] Adam Walker: And Debbie, how about you? I mean, what, where does cancer sit in your mind and in your daily activities?
[00:19:20] Debbie Legault: Uh, I don’t call it. Um, I call it no as a N E D dash T.
That’s what I call it. I call it in ed dash T and that means no evidence of disease today. Um, tomorrow could be a very different story. And regardless of that status, um, as she has suggested to you so much of Adrienne’s life is informed by the breast cancer diagnosis and how they have to treat it for you to survive that.
Um, it’s hard. To understand until you’ve been there, but it literally is always there. It’s not always in my face. Like it’s not like I have great joy in my life. I, um, I li I have a good job that I, like. I have a wonderful family. I get to spend time with my children and my grandchildren and my life is good.
I’m not saying that it’s not, it’s like this little thing over in the corner. That’s always kind of hovering. And, um, yeah, so it’s always there because it was just a long.
[00:20:18] Adam Walker: Yeah. Yeah, I can, I can certainly imagine. And so how do you stay hopeful? How do you stay positive? Uh, in spite of the side effects and the unknowns and the uncertainty, how do you maintain that?
[00:20:31] Debbie Legault: Can I go first, Adrienne? Sure. Okay. Um, so for me, the first word that comes to mind is science. That’s, that’s my first word. Um, Adrienne’s cancer is for two positive, as she said, and her oncologist called second. Uh, which is a monoclonal antibody third morning for her two positive cases. Again, change so much.
Attention is being given to monoclonal antibody treatments right now that I think it’s not unrealistic. It’s not an unrealistic hope that more Gamechangers will be coming in time to help Adrienne if she has a recurrence. So I look at this. Um, I look at organizations like Komen, who fund that science. And, um, I’ve said this poor without organizations like Coleman.
I don’t know what my daughter would be alive today. Uh, she had a very aggressive cancer. They treated it very aggressively. Their follow-up is, um, doing the best that it can to keep her in NAD stuff. Um, but that’s simply because there’s enough attention paid to research. There’s enough attention for the money going to the right place.
Um, so for me, it’s science. Um, and I wouldn’t say I stay positive. Um, once again, that’s, that’s a word that I struggle with simply because of the. Types of positivity that get pushed in your direction when a child is going through cancer or when your family members going through cancer. And I think it has a lot to do with the fact that people just don’t know what to say.
Um, so as opposed to staying positive, I would say that I stayed real. Um, there’s a big difference between those two. It doesn’t mean I’m a pessimist either. I don’t walk through every day being pessimistic and thinking that the bomb is going to drop and just means that I acknowledge that I could pick up the phone tomorrow.
And here, mom it’s cancer again. And I live with that, uh, sometimes, well, sometimes not so much.
[00:22:25] Adam Walker: Hmm. And Adrienne, how about you?
[00:22:28] Adrienne Legault: Oh, um, I mean, yeah, like, like she said that the game changes are definitely have a huge influence on that. I remember actually speaking of the Herceptin when I sat down with my oncologist in that first, uh, sort of.
Face to face. He mentioned that, you know, 18 months ago, obviously this would have been 2019, so 18 months prior to my sitting down with him, uh, or fentanyl, not 18 months ago. Sorry. Um, when I sat down to that appointment with my oncologist, uh, for that first face to face, he, he told me that five years ago, Um, had I sat down with him, he’d be looking at me saying that I’d be back in 18 months, um, with a recurrence, uh, without a doubt in his mind because of the, her two positive.
So that, you know, when she says that her something is a game changer, it was a game changer, um, for people, especially my age, uh, to, to be getting that triple positive or that her two positive diagnosis, uh, cause it meant that I could get through it without becoming metastatic. Um, Which is huge. Um, if we’re talking, you know, staying hopeful and positive now, I mean, I, I guess at the end of the day I did it before I can do it again, is, is sort of what I hang on to.
I have this tangible evidence that I can do hard things because I did hard things. So that for me, I guess kind of keeps me going as well, knowing that, you know, even during treatment, when it was really terrible, um, I made it through and, and, and I’ve gotten through it now during treatment. It was a little tougher.
Um, I’m like my mom in that sense, I’m not sure if positive is the word that I would use. Um, again, because there’s so many toxic posits, so much toxic positivity out there, but you just need to stay positive and think positive. Um, and I didn’t, I wasn’t, I was angry. I was sad. I was scared what I was also determined and stubborn.
And I, I know, I guess I. At no point, did it cross my mind that treatment wasn’t going to work, that I wasn’t going to be at the other end of the bed. Um, you know, in one way or another, I definitely did hit a point where I didn’t want to do it anymore. Um, not that treatment wasn’t working, but that, you know, I, I couldn’t keep feeling the way that I was feeling.
At which point my motivation was, was no longer internal for me. Um, it, it was about staying around and staying tough and getting through it for my loved ones for my family. Um, there was, I had this one very vivid memory, um, of my mom looking at me and saying, uh, I just need you to live. Um, I just need you to live.
And so, you know, That was my, my motto. I guess, you know, you, you have a mantra when you’re getting through really terrible things. And, and that was a mantra for me was, was my mom’s voice. I need you to live. So I did, and I do.
[00:25:41] Adam Walker: Wow. That’s, that’s powerful. That’s really powerful. I really appreciate you sharing that.
And I love what you said too. You can do hard things because you’ve done art things, right. That’s uh, that’s true. That’s very true. I think more so of what you’ve been through then than most others. So it’s amazing. Um, so Debbie, last question for you, uh, what’s some tangible advice that you would give to other mothers that are newly back in the caregiving role.
Uh, is there anything that you wish someone would have told you or shared with you, uh, before you entered back into the.
[00:26:18] Debbie Legault: There are, um, there are a few things. Um, I think the most important piece of advice, um, that I could give was to be very clear that if your child is an adult, that this is your child’s cancer experience and they need to be able to take the lead.
Um, it can be very hard to do that because you’ll be fighting the mama bear instinct all the time, especially. If I boil it down, the worst part of this whole thing for me was the heartbreaking helplessness. Um, I couldn’t protect her then I can’t protect her now. Um, and as a mother to go through my days when I have done everything and would do anything that I could to keep her safe.
Knowing that I can’t do that. It’s not within my power to do that has created, um, this heartbreaking helplessness. And I think it’s important to be prepared for that is that mama bear has to get tucked away. Um, Sometimes you need to be able to adjust, um, as your child shifts from wanting you to be the mom, like we’ve all had that experience.
Since at all time, I want my mom and then, you know, you get to the point that you’re feeling a little bit better and you want to take that control back. And that can happen in the blink of an eye. And it’s just important for, um, anybody like me, a mother in a caregiving role to understand. If that’s going to happen and to support myself through that, another suggestion is to make sure that you remember the following mantra.
This is not about you you’re potentially going to be a target you’re right there. Um, the frustration, the anger, the, especially because Adrienne lost her independence. I mean, my being there represented not only the cancer, but a loss of independence as a result of the cancer. So there were times. Um, when that frustration just was emanating off her like waves rolling into the shore.
And you just have to remember that. It’s not about you. Um, as I mentioned earlier, um, even if you’re not a writer, try writing it down. I don’t know why it works. I don’t know why it helps, but it does. And lastly, find someone, just one person. It doesn’t have to be a lot of people, just one person. That you can be completely honest with who will not make it about them, who will allow you to, um, get rid of some of that emotion, because sometimes it might be more than you can bear alone.
Um, just having one person is enough to do that. Who just, who won’t try to fix you, who won’t step in, who will adjust? Um, listen, I think that I, I had somebody like that and. Um, I’ve expressed to her that without that, I don’t know if I would have been able to do what I did at the level of intensity and the level of emotional support that I did.
And I don’t think there is anything someone could have told me that would’ve made a difference. Um, I think this is one of these experiences that you can’t understand unless you live it. And I think I might have went. Yeah. Um, but the snowflake thing I think is really significant everybody’s experience of cancer is different.
And so it’s important, you know, for me, it was brand new in all aspects. And so I really don’t think anybody could have prepared me, um, for that, um, Right now. Um, my last thing is I view myself as somebody in recovery. So, um, it’s like a 12 step program for me in recovery. Right. Like some days I get up and I’m not doing very well as I, as I mentioned earlier, sometimes, sometimes I just don’t handle it very well.
And because I allow myself to consider that I’m in recovery, it’s easier for me to forgive myself when I tumble into despair. So that’s kind of how I look at it.
[00:30:24] Adam Walker: Uh, really such great advice. I mean, specifically the part for caregivers that, that it’s really not about you. I think that’s just so. Um, to keep in mind and it’s, it’s easy to internalize and personalize some of those things, but it’s so important to keep that in mind.
So, um, wow. I mean, this is such a great interview. I just want to thank both of you for being so honest and vulnerable and transparent. Um, Debbie, Adrienne, just thank you for joining us on the show today. Thank you for having us. Thank
[00:30:49] Adrienne Legault: you.
[00:30:53] Adam Walker: Thank you to Exact Sciences for supporting this Real Pink podcast. For more information about Exact Sciences, please visit their website at exactsciences.com. For more information about genomic testing in breast cancer, please visit www.Komen.org.
Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. 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 @AJWalker or on my blog, AdamJWalker.com