What If I Live?

In the first part of episode, Carrie gives and introduction to the podcast and shares more about her curiosity around people from a young age. She shares a story about early bids for connection growing up in the 80’s and the creative way she found to tell her story via a rotary phone. 

Part 2: This part is a more serious story in which the main theme is “What if I live”? Carrie discusses her breast cancer diagnosis at the age of 29 and some of the ways that her intuition guided her treatment choices. She also discusses some of the ways that she had to overcome her reluctance to rely on others and how cancer changed her perspective on asking for help. 

Part 3: Who Asked Me? This is a weekly segment where Carrie shares some advice or suggestions based on her observations as a clinical social worker as well as questions asked by all of you! This week, the focus is on body image and what we notice. 

I want to hear from you. If you have a question for the Who Asked Me segment, or if you have an interesting story to tell send me an email at carrie.always.talking@gmail.com, and let’s connect. 

Transcript

Hello and welcome to the very first episode of Carrie's Always Talking. I'm Carrie McNulty. I'm the host. And I am in fact talking an awful lot. And especially in today's first episode, you're going to hear a couple of stories from me. But to give you an idea of what this podcast is going to be about, it is about connection, people, and stories. To me, life is nothing more than a compilation of stories, one thing after another that we kind of go through. But it's also to me the main way that we connect with one another and we start to build a little bit of humanity and empathy with one another, which unfortunately at this point in the world, we aren't doing so great with and maybe could use a little bit more of. Now I realize it's not possible to get to know every single person that you come across. And maybe that's something that you wouldn't even want to do. But for me, I can say that I have always been incredibly curious about people. Why do they do the things they do? What are their day -to -day lives like? I can remember being little and being in the car in a rural area, driving through with my parents and seeing these houses that seeming to be in the middle of nowhere and thinking, where these people work? What is their day -to -day life like? You know, you could be in a crowd of people out somewhere looking around at all these people meeting up and people on their own. And there's people everywhere all around us that we don't know. 
And I find myself thinking, what is their story? Maybe making some things up in my mind. If you're like me and you have always been curious, then hopefully this podcast will be for you because I really am hoping to bring on some interesting people who have had some life experiences that would benefit us all to learn about. And also it's going to be fun. Some of the stories might be a little sad and I will give warnings and disclaimers before those. And hopefully some of them will make you laugh too. 
But I'm hoping at the end of the day, like I said, that what we end up is feeling a little bit closer together than we do further apart. I get to do this in my day -to -day job as a licensed clinical social worker. And I have heard the stories of some pretty incredible people doing this work over many years, 23 years in mental health. With that, I would like to Think that I have taken away some things that could be useful. So there will be aspects in this podcast where maybe some support or advice or suggestions and those kinds of things are given as well because that is a part of who I am on top of being a very curious and interested person. So that's sort of gonna be the structure of what this podcast is about. And like I said, today, the first two stories are going to be stories of my own. And the first one, I think, not so serious.
but gives you a little bit of an idea of when I say Carrie's always talking, what exactly that means. So why don't we get into it? I'm going to set the stage for you. I am, I would say three or four years old. So it's about 1983, 1984. And we're living in a pretty small town with very limited resources. So playing outside at that time was pretty much what you did 24 seven. And I have to tell you. That it's probably, it would be tough to find somebody that loves dogs more than me. We did not have a pet at that time, but our next door neighbors did. They did. They had a very old, not so friendly dog named Snowball. And I kind of knew and understood that maybe Snowball wasn't the kind of dog that you would want to just go up and pet. However, I also had a very soft spot. And so on days where it would be very hot outside or, you know, it would just be, he was outside all the time and I really felt for him. Now I have an older brother and he's a part of the story. I guess you could say maybe he's the villain in this story, but he, for some reason told me that I should go over and approach this dog. Now, for some reason, the neighbors put the dog's food dish on top of his dog house and he couldn't reach it. And he was barking and barking and barking. And I thought, there has to be some way to solve this. And my brother decided the best way for me to solve it would be to simply go over, reach above the dog house, put the food dish down and voila, snowball has dinner. So I do, I walk over, I reach my arms out, stretch them out over the dog house, reaching for the bowl, chomp, snowball bit me in the stomach. 
I remember everything up until that point. Don't remember anything afterwards. Don't remember going to the hospital. It was not a ferocious bite. I did not require stitches. I don't have a scar, but I did probably, I probably got a tetanus shot. I don't think anything happened to my brother because he made this suggestion. It's still one of these stories that we tell in our family that's ha ha ha. Remember when you told your sister to do this and she got bit. but what I do remember after that on a daily basis at this time, you could reach the operator by dialing zero on your rotary phone. Hence the artwork for this podcast. And so that's what I did. I would call every day, dial zero, and get an operator on the line. And I would tell her the story, the tragic, tragic story of me and Snowball and what happened. 
This kind of lets you know the kind of kid that I was and how much talking I wanted to do. If somebody wasn't going to pay attention to me, I was going to find a way to get somebody to hear me. Now, every time whoever was answering was always so nice and very sweet and, your story. that's, you know, I'm so sorry that happened to you, honey, but we have to keep this line open in case of emergencies. I would feel satisfied that I was heard and I would hang up the phone and I would call back the next day and tell this story. So, that's a little bit about the reason for the artwork for the podcast and just an indication for you of just how much I do like to talk. I'm going to take a quick break. I'm going to come back with another story. This one's going to be a little bit more serious and a little bit more involved just as a disclaimer. So I'll be right back. 

Okay, now this is part two. And I want to give a little bit more of a warning just in case this is going to be a little bit of a trigger warning about what this next story is going to be about. I am a breast cancer survivor and that is primarily what this story is about. So if you're somewhere in your journey where you're not ready to hear a lot of details or to talk a lot about treatment, then this one might not be for you. But if you are, I think there could be something useful in it for you because the main focus of this spoiler alert, I live, talking to you right now, I'm alive, is the theme of what if I do live? You know, when you get diagnosed with cancer at a young age, you are not necessarily thinking long -term about what you want to do with your life after that. You're really moment to moment. There's really nothing that forces you, kind of slams you into mindfulness as much as getting a cancer diagnosis at a young age. So, that was why I thought it would maybe be important to talk about this. And that I've never really told my whole story and this probably won't be every little detail of it, but it's going to be a considerable amount of what it was like to go through this at the time. So prior to my diagnosis, the year before, my husband and I moved to Northern Ireland for him to go to grad school at Queen's University. And during that time, I would say as excited as I was to go and live in another country, again, I'm from a very small town and people don't leave the state often, let alone go and live in another country. And I was eager for the adventure - but pretty naive to how stressful it would all be. You know, I was like, everybody speaks English. How different could it really be? It was very different, very different. And I learned just how high my anxiety was by making the choice to move to another country. Luckily, I was able to bring my dogs at the time, and that was helpful. But as the year progressed and we got to know people and got more settled there, I was working, it was a lot better. But I started to notice some things about how I felt physically. One is that I had extreme allergy issues when I was there. And I didn't think too, too much about that because the environment is very different. It's a little bit more damp there. There's a lot of rain. Buildings are a lot older. And so I just assumed maybe it was a product of that. But I'm talking allergy so bad that I just wanted to turn my face inside out and just sort of dig into my face. And that lasted almost the whole year that I was there, some other physical symptoms that I noticed that were a little bit harder to manage and a little bit more confusing for me were feeling this level of fatigue and just trying to walk. You know, we didn't have a car, so I was walking to the bus a lot. I was walking to different places in the city in order to get to work, and I just felt like weighted down, you know, like my legs and feet. I was trudging through concrete to get to where I needed to go. And that was a very different and odd feeling for me. But again, it on its own, don't think much about it. Just figure maybe I'm out of shape, you know, maybe I'm just more tired. Another symptom that I started to have that looking back in hindsight, as we do fits together much more with what I was about to have happen to me were low grade fevers that I was having every night, along with hot flashes, night sweats every night. And again, we are living in a different place, temperature regulation, we have this great down comforter, but it's super hot. And I'm thinking, you know, I just can't, I'm not adjusting well to this at all. So the year comes to an end for my husband at school and he's considering maybe he wants to stay and get his PhD. I'm thinking, I don't know, I really feel like I should go home. You know, even though I have adjusted and I've made friends, it's just as... piece of intuition internally I'm feeling like this drive that you should really just go home. We make the decision that that's what we're gonna do. I applied to graduate school at the University of Pittsburgh for the master's of social work program. And to me, that's the biggest stressor at this time. I'm gonna need to move home and I got accepted to the program. It's the only place I applied to and I'm gonna be honest. I did not have great grades and undergraduate. In fact, most of school was something that I just didn't care about. Not surprisingly, I really just wanted to go and talk to people. And so that's what I did. Hence here we are doing this podcast. So I didn't take school seriously and my GPA was, I think a 2 .98 and it needed to be a 3 .0 to get accepted to this program. So they accepted me provisionally. And I was so excited about that, but still very anxious and nervous. Really questioning, was I going to be able to do this? I know, get to the breast cancer part. We're working towards it. Before we left in Belfast, one of the places that I worked was a really awesome place where I got the opportunity to work in mental health there. And I got to work at this house where there were five or six individuals who are working to get themselves back into the community after higher levels of care. And I was sort of the lone worker in the house with them. And I got to do all kinds of things that were really fun and kind of different things that we don't necessarily do on our mental health system here. And I got to go with one of the people that lived in the house and she had this idea of seeing a palm reader. 

Carrie McNulty (12:24.142)
okay that sounds great right up my street you know this is definitely something I want to do. so we go and if anybody in Belfast is listening to this and knows who this amazing palm reader was in the city center I have no idea what her name is I don't even remember the street that we were on to get there but I'm forever forever grateful to this woman because we go and to me the thing I'm most stressed out about is I'm gonna be going back to school can I handle it do I feel like I'm smart enough to be able to do this because 

Carrie McNulty (12:51.438)
I didn't have the best track record academically and I was really worried. I wanted to be a therapist, but I was really worried that maybe I wouldn't be able to handle the course load. And so that was my main question that I had for her, along with the fact that my mother had just recently had a surgery and she never healed well from surgeries. And so I was worried about that, being at a distance. And these were the two things I was concerned about. This woman flips over my hand and is looking and reading. 
And she was pretty blunt, which I, you know, in Belfast, that's not atypical and something I always really appreciated. But she basically said, you know, this other stuff that you're coming in with doesn't really matter. You need to be paying attention to your health. You really need to be focused on your health right now. This is something that's super serious. And I was just sort of confused and taken back and okay. Yeah. But what about school? Am I going to do okay? Am I going to fail out? Is this something I can handle? Again, just sort of redirecting me back to, no, you really need to be paying attention to your health. You're going to be okay, she said, but you really need to deal with what's going on with your health. So of course I get kind of tearful and I leave and... kind of tuck that away. And we eventually moved back. I go before my husband because I was gonna start school before he quite wrapped up his program and then he was gonna join me there. By the time I moved back and started school in Pittsburgh, I had a very noticeable lump in my right breast. Very noticeable. I was not a very large woman, wasn't very well endowed. 
I was not the kind of girl who would walk into a bar and have a bunch of guys buy me drinks based off of my boobs. That wasn't me. So when I noticed something, it was very, very noticeable from the start. And then it got bigger. I had what they call fibrocystic breast tissue in both breasts, very dense. At one point many years ago, they said that was supposed to be protective against breast cancer. And then you come to find out that that's not true at all. It's actually the exact opposite. 
much like tanning beds were supposed to be safe for us, by the way, in the 90s. Boy, do I have regrets. That's a story for another time. So I don't have great health insurance. I bought a plan through the university and I eventually, I think it was January after my first semester of school. And in my first semester, I did great. You know, I think I got one A minus and the rest were A's and I was surprised at how well I was handling being back in school, because again, this was my main concern. And it really wasn't as challenging in that way, I think because obviously I was really interested in what I was learning. And that's so different than undergrad where you have to take all of these classes about things that you don't really care about and probably aren't going to use. So basically, I make it to the doctor. I go in and see this guy. I've never met him before. And his eyes almost pop out of his head when I say, I have a lump. 
And he is like, yeah, you do. And just sort of making this face. And he was like, I'm, I don't think we're going to refill your birth control right now. You know, I had been on birth control since I was 17 years old. And he was like, I don't think we're going to refill that. I just want to refer you, you know, to this hospital, to Magee, Magee women's hospital. I'm just going to have you see somebody there, you know, trying to stay calm, but you could see that he was alarmed. And I kind of know like by this point. The lump is pretty big. It almost looks like a bruise on my skin and it's painful. You know? So I'm not super shocked by this, but okay. And things start moving real fast beyond this point. 
I get an appointment. I believe the first doctor they had me see was a surgeon. It wasn't the oncologist because they wanted to do more testing and to assess either way if this was cancerous or not, perhaps they wanted to remove it because it was pretty large. And I believe that I had that first appointment. 
I want to say the following week, like they really got me in fast because they, again, this doctor was pretty alarmed by it. And I went in and, you know, again, I'm 29 years old. So I walk into this waiting room at the surgeon's office and there's this big fish tank. You know, I remember the color of sweater that I'm wearing. And I see all these women who are older sitting there with head scarves on. And it's starting to click for me. Okay, this is, I think this is going to be your reality. 
You know, there was a part of me that knew even then just at this first appointment that this is the direction that's going. So I go back and I meet the doctor and he's super nice. and he's sort of still trying to like be relaxed about it. You know, this could just be a Fibroadenoma . You have fibrocystic tissue. I'm not worried. You're really young 80 % of the time. This is nothing, you know, we're going to do some tests, but you go ahead and go have lunch and don't think about it. It's no big deal. 
So I do, and I come back from lunch, and then it's time to do some of the appointments with the radiologist. And again, really appreciative for her. And a lot of people that worked in radiology, again, tend to be a little bit more straightforward than she was. She took a look at this via ultrasound and after my mammogram and was like, this does not look good. This looks very vascular. This looks like there's very irregular borders going on with this. This does not look great. I just want to warn you ahead of time. 
Okay. And you know, it didn't, I was in a lot of pain that day because you know, doing a mammogram is painful anyway. Doing a mammogram with somebody with a small chest is very painful. And then doing a mammogram with a huge tumor really was quite painful. So I was pretty spent by the end of that day. And I got set up to, after that they figured the best way to go about it was to do some core biopsies of the tumor. And I had imaging done, which showed that 
whatever this mass was, was about four centimeters by six centimeters. And again, that's pretty large. Then we come to find that there were two other areas that were suspicious in the same breast. And so they call that multifocal. And they took, you know, a little biopsy of some of the calcifications that they saw in one area as well. So that was a pretty painful day when they did the core biopsies and everything is going so fast. Everything is like, You know how they say it's slow motion and fast at the same time. And that's really how it felt. because these tests were getting scheduled so quickly and I was getting answers quickly, but also like trying to wrap my head around the fact that this is actually happening. Part of me knows that it is cancer already has already looked in the hindsight rear view mirror and thought about the symptoms I was having and sort of knows this. And part of me is like, what is this going to be like? What am I going to do? Like I'm in this graduate program. I'm trying to figure out what I want to do with my life. 
And now I'm dealing with this. Like I was worried, can you do grad school? And then it's like, well, actually the universe is like, can you do it with cancer? So I had all of the biopsies done and it got confirmed for me. on February 9th, 2010, I got a phone call from the surgeon who I initially met with. And he called me rather than have me come in for appointment because the area code that I have, for my cell phone is from a different area of the state. So he didn't think that I lived locally. And he called me and I remember sitting at my desk, I was working on homework up in my bedroom. I remember again, I'm wearing this purple sweater and I'm sitting there and I answered the phone and he says, everything's come back and it is in fact cancer. And it is invasive. You had one area that's non -invasive and some calcifications, but the major tumor is Invasive ductal carcinoma and right now we're giving you a staging of stage 2b It doesn't appear to have infiltrated your lymph nodes yet, but it is multifocal in this breast the statistics and what came back in my pathology were That I was very high er estrogen receptor and progesterone receptor positive So I believe it was 85 % for the estrogen and 90 % for the very sensitive to hormones. And then HER2 testing is testing a protein that can cause cancer to grow more quickly. And of course, I was HER2 positive as well. So triple positive overall was my diagnosis. They also do a score test that's called a Ki-67 score, KI -67. And that lets you know how quickly your cells are dividing. 
and mine was an 80%, which means that the cancer was more aggressive, it was multiplying and spreading and had the potential to spread outside of the breast faster. But on the other hand, what that means is when your Ki-67 is high, that your cancer is more than likely going to respond really well to chemo because any quickly, rapidly dividing cell is what chemo goes after. 
And since my score was really high, they were hopeful that if they got me started soon on chemo, this could really do something to kind of get this under control quickly and hopefully keep it from going anywhere. And just as a side note, when you're, you know, when you're on chemo, one of the reasons why your hair and mouth and stomach areas are so affected is because those are other areas of your body where your cells are rapidly dividing. So it attacks any cell like that, not just cancer. And that's one of the reasons why people lose their hair and end up with stomach ulcers and acid reflux and all that good stuff. So I get all this information and then I have to tell my husband who is on his way home from a job that he was able to find that wasn't a great job. And you know, we're kind of down and out as it is. We've got his one income. We're not in a great place. And I call him and I tell him, yeah, I could have waited until he got home, but I wanted him to have a little bit of time to himself to process it. so he could kind of feel what he needed to feel. And I remember he came home with this little teddy bear and this little rose that was wrapped in red foil, a little chocolate rose. He just gave me a hug. 
And so that was the start of that journey. I'm sorry, I didn't expect to get emotional this many years later, but this is what real life storytelling is, you know? So we have a decision to make, or I should say I have a decision to make. I go back into the surgeon's office and being that I'm at a cancer center, they have this option to do a study. 
And the standard of care at that time would be six rounds of chemo that would have been carboplatin and taxotere. And that was primarily what they used at this hospital to treat the kind of cancer I had along with Herceptin, which is a drug that targets the HER2 protein. But there was this option to do another drug that helps to target the HER2 protein called Tykerb and or Lapatinib and 
There were three arms to this study, but it meant a different chemo regime. And so this is where my intuition started really kicking in about what I wanted to do with my treatment. And I think it's really important because I think we all have the ability to tap into our intuition and to kind of know what's right for us. There was a big part of me that wanted to say, just do the standard of care. If that's good enough for everybody else, that's fine for you. You don't need to do anything different. 
And I think one of the things that was pushing me towards that was the fact that if you just did the standard of care, just these two chemo drugs, by the way, are very harsh. So they would, it wouldn't have been an easy ride, but it would have been six rounds of treatment, six rounds of chemo, and then onto the herceptin And when you're in this position, you want it to be over as quickly as you can, but you also want to do everything that you can possibly do, right? To get rid of it, you want to hit it hard, you know, In essence, throw the kitchen sink at it so that you aren't dealing with this if you can help it. Because sometimes you can't later on down the road. So I was really like, I cried and I went back and forth and I talked to different people at the surgeon's office and what decision should I make? What decision should I make? I knew what decision I should make. I knew. I already knew. I knew that I should do the study. I knew that I was going to get randomized to the third arm of the trial, which was all of the drugs. The Lapatinib have included. I knew it. I did this study, I was randomized. They put me into that arm. It just because, you know, as in any study, you don't know what treatment you're going to be getting, but I already knew because I knew that was the right thing for me to do. so that meant that the chemo drugs that I was going to be doing was one called Adriamycin and Cytoxin. And that was the first one. And that was for four rounds. And they call that one the red devil and they're not kidding. 
But to backtrack a little bit before I started treatment, I had made this decision about wanting to do the study and my husband used to play in a band. That's how we met. If you ever want to hear that story someday, I'd be happy to tell you. But he was in, you know, home and had this opportunity to play with his old bandmates one more time before I started treatment. And we were ready to do that. We wanted to go home to the town where he was at, where he grew up. 
Well, most of his life. Anyway, we were going to go back there and he was going to play the show. I was going to see some of my friends before treatment got going and just to feel kind of normal for that weekend. So we load up our car and it's after Christmas. So we had borrowed this Christmas tree from his mom. Cause again, we're in this apartment with like no money. So we borrow this, you know, Christmas tree from his mom and we're in the process of bringing that back to her. This big long reusable tree. And we also have my two dogs. 
at the time who Harvey and Hannah Boston, Terrier, Boston, Terrier, Corgi mix, my babies. And we were going to go visit for the weekend. I had them loaded up in a crate. Thank goodness. When I tell you at the time of my life, when I got diagnosed with cancer was one of the most stressful, I truly mean it. And it isn't just because of cancer. We were driving home to State College and we were on a road that we've driven a million times and we got hit head on. There was a girl who I can only imagine was messing around on her phone doing something. I don't know. And she hit us head on. Thankfully. 
Yes, our car was totaled. We needed to be cut out with the jaws of life. I had my dogs with me. And if you know me at all, and as you get to know me, you'll know there's nothing that I love more. Again, my first story was about a dog, these dogs. I just loved them. And I was beside myself thinking, I'm going to have to leave them here and go in this ambulance. And what's going to happen to my dog? So I'm running around like it's an episode of Benny Hill, you know, the music playing, trying to figure out in between. And they're like, ma 'am you need to get in the ambulance and go to the hospital. You've just been in a car accident. You know, you're not okay. And I'm like, what about my dogs? What about my dogs? The police department or the fire department of this area, so kind. They took my dogs to their firehouse and took care of them while I got checked out at the hospital and the whole time in the ambulance. And once I get there and get checked out, yes, I have whiplash, but that's the worst of it. And thankfully my husband's fine too, because he was mainly impacted. 
It was on his side of the car that we kind of got hit that she crossed over. And. You know, the whole time everybody kept saying, thank God you're okay. you're okay. This is good. You're fine. You're fine. You guys are okay. Yes, your car's total, but everybody's fine. You're good. And all I can think in my head is, yeah, I'm good. I didn't die from this car accident, but I have cancer. Like I'm not good. So. 
Needless to say, he didn't get to play that show that night, but we did go home and stay with his family and they took good care of us and we went back. And then not too long after that on February 26th, I started my first round of chemo. So I look at it as something that was really, you know, listening to my intuition, I believe was a lifesaver in lots of ways with my treatment because the first drug that I did, the Adriamycin and cytoxan and then was followed by 12 rounds of Taxol. 
and then the year of her Herceptin on top of that. And the study drug, Lapatinib, with the Adriamycin Cytoxin, my tumor after the first round shrunk by half that I could feel. And again, this was like a monster tumor at this point, and I could feel that it had shrunk by half. And I knew this was the right chemo, this was the right choice that you were supposed to make. And that was validation to me that listening to my intuition was right. The other place where it ended up being really important that I listened to my intuition about what I wanted to do was in picking my oncologist. The first person that I worked with, typically I'm not gonna lie, I choose female doctors where I can because in my experience I'm more likely to be listened to and that's just the unfortunate fact of the matter, at least in my history and I think for a lot of women. But I met with this oncologist and we just did not click and she kept saying, What's first and what should be most important is that you freeze your eggs because you're 29 years old and you're not going to, you know, there's a chance you might not be able to give birth. I have never for one day in my life wanted children. Never, never, never, never, ever. So the fact that this person kept drilling that in, it let me know that that's what she felt should be important to me, but she wasn't listening to me. And I said, I need to, I need a different oncologist. I need to see somebody else. 
And that's when I got put with the, you know, the best oncologist in my mind that I could have possibly been put with. Because again, he was very caring. He was very direct. He had been doing it for a very long time. And with him, I felt very confident in the treatment decisions that we were making. And I didn't look back to this day. I don't even see him anymore. I guarantee if I sent him an email and had a question, that man would write me back immediately. And that's just a testament to what a good doctor he is, you know? So. Picking him was a part of why I think it was successful. And then one thing I didn't know when I was initially diagnosed, even though I did genetic testing, they only tested for BRCA1 and 2 mutations at that time to determine cancer history. Now I have a lot of cancer history in my family. My grandfather died of pancreatic cancer. His wife, my dad's mother died of ovarian cancer. My maternal grandfather had colon cancer. 
you know, there, there's just been a lot of it in my family. And so genetic testing made sense along with the fact that I was young at that time, they did not test for all genetic mutations that could be related to cancer. And to be fair, there still isn't much known about many genetic mutations. So this opportunity came up for me to do a test out of the state of Washington. I was a part of this group called young survivor coalition. 
Thank goodness, because those women were amazing and I still keep in contact with them today and they're part of the reason why I learned as much as I did about cancer and had as much connection and community as I did, which was key, I think, as well. But initially, this study was only open up to people who were triple negative. So as you recall, I'm triple positive, which means all of my markers are positive to the max for estrogen receptor and HER2. And this study was meant for women who were triple negative, which meaning no hormone involvement, no HER2 involvement. And unfortunately for a lot of those women, their treatment options were a lot more limited, especially 14 and a half years ago when I was diagnosed. And this was to determine if there were other genetic mutations known that could be contributing to the cancer diagnosis. They eventually expanded this study to people who weren't just triple negative. And I sent in through Magee a sample of my tumor. I didn't think anything was going to come back. You know that I would have any other mutations. I just thought it's bad luck. You know, it's just bad luck because that happens too. And I got my results back and I was pretty surprised to find out that I was positive for a check two mutation. there's a couple of different deletions that can happen with check two mutation, but, that gave me a higher risk. I think it was 30 % higher than the average population for breast cancer. Well, I had already had it, so the horse was out of the barn there. But the thing about it, when I chose what to do after my chemo, which I had a 95 % response rate after doing chemo, I still had some non -invasive cancer that didn't respond and some calcifications that they needed to remove. But 95 % was pretty damn good given how big my tumor was and the fact that I had multiple. 
I had the choice of whether I wanted to do a single or double mastectomy. A lumpectomy was never on the table for me. which again, if they did that, I just wouldn't have had a boob anyway. So, I wanted both from the beginning and I made the right choice because with the check two mutation, there's a higher risk for contralateral or contralateral breast cancer, meaning it could show up in the other breast at some point later on as a new primary. So again, having very dense tissue, I just wanted to them both to be gone. And so again, intuition helped to guide me before I even knew that I had that mutation. And then on top of it, I didn't have any node involvement. I had one lymph node removed in my surgery, the sentinel node, and that was negative for cancer, amazingly, given how much I had in that one breast. And I didn't want to do radiation at that time, and it wasn't really being recommended. If it would have been recommended, I would have done it. But there was, again, a part of me that was like, I don't think this is a good idea for you. Well, with a check two mutation, your DNA can't repair itself. So anytime you're exposed to radiation, it's more harmful for people with this mutation than it is for people without. And again, this was something I didn't know. It's just something I felt internally guided to make this decision. And thank goodness I did because it really did make all the difference I feel in my treatment. And radiation is still there if I need it at some point. So for me with the type of cancer that I had, my risk of recurrence never goes down. There's some people who after 10 years, they're considered, it's very highly unlikely that they're going to end up with a recurrence of the same kind of cancer that they had. For me, unfortunately, that doesn't ever change. And I did a year of Herceptin after that. At that time, that was the only drug that was being used for HER2 in continuation. And I did the study drug Lapatinib as long as I could. And what was cool about that drug is that it crosses the blood brain barrier. 
And with her two positive cancers, the risk for brain metastatic cancer from breast cancer is higher. And, at least in my understanding of that. And so it was exciting to me to take a drug that could potentially cross that barrier and maybe be somewhat protective. I don't know. I did that one for as long as I could. It gave me some very significant GI issues that I still deal with to this day, but I have no regrets about the decisions that I made with my treatment because I had such a good response rate to treatment. I did a drug called Tamoxifen for eight and a half years. It was recommended for 10. I was only able to withstand it for eight and a half because I was having headaches every single day and migraines over 15 days out of a month. By the time I stopped it, it was cumulative. And when I tell you that once I did stop it, the migraine stopped, I mean, I have maybe one of those every two months now, as opposed to multiple, multiple days in a month. If I ever needed to go back on it, I absolutely would. And I had the blessing of my doctor to stop it when I did. So, you know, again, really felt very guided by my intuition and these decisions I made about my treatment. When we get to the part of my story where I'm like, what if I live? When you're going through treatment, you're really, like I said, forced into mindfulness. You're day to day taking it. You don't plan far ahead because you don't anticipate that's not, you know, for none of us, is it something that we know definitively? 
But there's something very different about knowing that you have a very serious illness at a young age that changes your perspective on how long you might be here. And it didn't stink. It just didn't sink into me for a very long time that I could be around. So I finished my grad school program and I am pleased to say that I did it with a 3 .97 GPA. I had two A minuses. That was it. I breezed through it. I had some wonderful professors. School was never an issue and was never going to be an issue. So that palm reader was right. That wasn't going to be my main concern at all. When I finished, I got the best job that I absolutely could have gotten, working at a place that was absolutely amazing. And I started specializing in eating disorders. I remember my interview with this woman who I love very much to this day, who I consider a mentor, a friend, so smart and a leader in the area of eating disorder treatment. And she was interviewing me and said, where do you see yourself in five years? Which is such a common question that people get asked. Right. And in my head, I'm thinking, hopefully alive. I don't know. maybe dead. I'm not sure. but so my answer to her was, I'll probably just working here, doing my job as a therapist. That's what I wanted to do. That's why, you know, I went to school. So, yep, probably here. but I really didn't know. I did not know. I'm in a much better place with it now. And that I, you know, I asked myself, I would say probably seven years after my diagnosis, okay, Carrie, what happens if you live? And by that point I had moved to private practice and I was seeing, you know, clients working for somebody else in a private practice and It was a great job too. You know, I still have some of those clients to this day. I love it. But it became clear to me that I was actually going to have to think and plan about what I wanted the rest of my life to be. And you'd think that's a huge relief and it is, but it's also something to wrap your head around the fact that it's okay to plan a little bit for the future when you really haven't been letting yourself do that for a long time. I am never going to be somebody you will never catch me saying the cancer is a gift. It's a gift. 
I don't know what I would have done without it. I learned so much about myself. It's not a gift. It's miserable. It's a horrible experience. I wish that nobody had to go through it. I feel like the treatments are still so barbaric. They just strip you of your identity. It's a horrible thing to go through. But a lesson that I did need to learn, and I am a firm believer that either you're what the universe is trying to teach you or eventually it smacks you in the face until you get it. I needed to learn how to allow other people to support me and help to take care of me. And that is something that I had to learn and having cancer, because you can't do that. You can, but it's certainly not recommended to be completely alone and trying to do it. It's a very hard thing and it's a very, it's really having the mirror come up to meet you in a lot of ways. And so that is one thing that I took from it. But I do want to reiterate that it was not a gift in any way, shape or form. And I would have been happy to learn that in some other way besides having cancer. So for me learning that I was gonna live and to make the most of it kind of led me to eventually starting my own practice where I kind of get to be my own boss. And that's been great. And I've had a lot more adventures. that maybe I wouldn't have had if my life had gone down a different path. So that is a very, I guess we could say kind of a brief story of my cancer journey and diagnosis. And I hope that it was helpful to hear. And if you have any questions about cancer, please, or anything in general, if you have comments or things you'd like to hear about, you can reach out to me through my email address for this podcast, which is called Carrie period, always period talking at gmail .com. I'm going to take a quick break and then I'm going to come back with our last segment. So hold tight. 


All right, our last segment in the podcast, and this is gonna be every week I'm gonna do this. How I'm thinking of doing it right now is that I'm thinking bi -weekly, bigger episodes, and then on the off weeks I'm thinking about just doing a who asked me segment, where hopefully I'm getting some questions from all of you, and then also sharing some things that I think might be useful. I just wanna give the disclaimer off the bat. While there might be some discussion of therapy interventions or some therapeutic related content in the who asked me segment, this is by no means a replacement for therapy. This in and of itself is not therapy. This is sort of meant for like entertainment, but you could take it or leave it kind of thing. But like I said, having worked in this field for 23 years, I can't imagine that there isn't something that I have to offer that might be useful to people. 
And I definitely want to make that a little bit a part of this podcast because it's a part of me. So that being said, of course, I don't have any questions yet because you guys don't know me. So you haven't asked me anything yet. So the thing about me is that I always got something to offer. And what I have to offer this week in the Who Asked Me segment is we're in summertime now very clearly. And I have mentioned throughout here that I am an eating disorder therapist. I'm also a trauma therapist, EMDR certified in internal family systems. level one trained. But today's focus is going to be about eating disorder related stuff. 
If you have somebody in your life that you have noticed 
Let's just say if you've noticed that their body has changed no matter what, whether somebody is in a larger body or a smaller body and you have noticed that, I want to invite you as the person who've noticed to do this one thing. This one thing that I think will make much more of a difference than what you realize and that is to simply say nothing. Simply say nothing if you notice a change in somebody and here's why. We don't know in our lives who might have an issue with an eating disorder and who doesn't. And we might not know that by making a comment one way or the other, if we are negatively impacting somebody's mental health. You may think it's a compliment because of the way our society is set up. There's so much focus on weight and commending people when their body changes and that body gets smaller. But you might be inadvertently reinforcing something that is really not healthy for that person. And given the last 
part of this podcast and my story about cancer, we also don't know if somebody's sick or what they're dealing with in their life or why their body might have changed. So not saying anything, simply saying nothing is much more of a gift to people than maybe what we realize. We don't have to make a comment if we notice something. And in fact, you're probably doing something much more kind and much more caring for people by not saying anything at all. Because I promise you that people are very aware of their bodies. and they understand and know what's going on with them and we don't need to observe anything for them. The other thing I'll throw in there is sort of an added thing is if you find that you're in an office setting or you know there's some sort of potluck or a group dinner or things like that where you're out to dinner with friends, the other thing I'll ask you to do is simply not say anything about people's food choices. 
You know, I've had people that have worked with in the past who've talked about maybe they're trying to work towards eating something and they finally get up the courage to do it. And one of the things that we talk about is that people aren't noticing what you're eating, but in this time period where the one person does and they make a comment and they say something like, you never eat that whenever we have cake in the office, or you never eat that whenever we have that. And the person actually got up the courage to do it that one time. Promise you they won't do it again. So please, if you notice anything out of the ordinary, if somebody's having something different, more or less, whatever they're doing, the kindest thing we can always do in these situations is to simply say nothing. Even if your intentions are good, I promise you, it's gonna be more impactful to not make a comment at all. Well, that's all I've got for you guys this week. 
So appreciate you joining me and I hope that you'll join me again. And if you really liked the podcast and if you kind of liked the concept of what we're doing, please share it with people in your life. I would love that. again, my email address for questions, or, you know, anything like that. This last segment could be anything from, if you have questions about boundaries or different treatment modalities or just things going on in your life that you have a question about, you can reach me at Carrie, CARRIE.always.talking@gmail.com

Carrie McNulty (47:28.517)
Be well everybody and I look forward to talking to you again soon. Take care.