0:03  
Hello and welcome to breast cancer conversations, a podcast brought to you by survivingbreastcancer.org. I'm Laura Carfang, breast cancer survivor and founder of survivingbreastcancer.org. A nonprofit organization providing community, education, and resources to empower those diagnosed with breast cancer and their caregivers from day one and beyond. Good morning, good morning, my friends. I am so excited to be here with you this morning. Pour yourself a cup of coffee, hot tea, or morning juice or smoothie and let's get the day started. If you've been following survivingbreastcancer.org on IG or Facebook, or our Twitter handle sbc_org you know we've been doing a lot of traveling the last few weeks, I spent some time in Santiago, Chile. I was at the San Antonio breast cancer symposium in San Antonio, Texas. And this week, I'm in Chicago, where we just had our holiday shindig with survivors, thrivers, and caregivers. Before we jump into today's episode, out, I want to share a few updates. First of all, thank you all so much for tuning in today and listening. Without you, this community in this podcast wouldn't exist. I love hearing from each and every one of you. Thank you for your emails and feedback, so please keep them coming. Also, if you're enjoying the content, there are so many ways to show your support. Please give us a review and rating on iTunes or wherever you get your podcast can jump over to Instagram and follow us at breast cancer conversations as well as our nonprofit surviving breast cancer org. And then of course, head over to Patreon where you can subscribe and follow us there too. You'll gain access to premium content that we'll be pushing out. So let's dive in. Today we're continuing the conversation we had last week with Alicia and Angela. Alicia was 27 when she was diagnosed with stage III breast cancer. We chatted last about radiation and chemotherapy as well as intimacy all over drinks and pizza. We're back at the table and ready to continue the discourse. Today we talk about the decision to have a radical mastectomy. Alicia also had complications which resulted in her going flat. We end with a powerful message from Alicia, the cancer fighter who articulates the challenges she understood her partner was going through as the caregiver. Communication is key, walk up to the conversation. Right. So this is like segment two, we just have like a really deep conversation. We are here with Alicia, who is an eight year out survivor with stage III breast cancer and her partner Angela, who we definitely want to like pick your brain a little bit more because you work in such an amazing industry of like sexual health or how would you describe your.

2:44  
vaginal wellness?--Ooh I like that--women's health? Um, the joke is that I'm the vagina whisperer.--I love it.--Um, yeah, a lot of it is the vaginal health, wellness. stay comfortable. You know, being yourself 100%

3:02  
She’s also eight years out, caregiver for eight years.

3:05  
Yes, and I was also about to say, we also have like, a caregiver here too. So, again, cheers and welcome to the conversation, especially leading up to like, I want to say Breast Cancer Awareness Month, right? You're like, Oh my god, I just went through all of this. And I'm angry, or I'm mad, or I'm processing. Or I'm moving on. I've talked to women who literally packed their bags and moved across country, out of state, from new jobs, from new social networks, from new ways of like, yeah, okay, Laura, we support you. We love what you're doing with breastcancer.org. I love you as a friend. I'm not involved in the breast cancer. I'm like, that's cool. Like, you know what, maybe in eight years, they'll come back because they realize the support that people provide, but everyone's on a different path. Right? 

3:53  
That's hard. Especially from a psychological standpoint. It's never good to not deal with anything and you know breast cancer is that is a very traumatic experience to go through. And PTSD is a real thing. And PTSD from breast cancer from any type of cancer but from breast cancer is a very real thing.

4:17  
I don't know if you're a caregiver, a doctor, a patient, a friend, um, but you're getting information and you're getting support when you are making a decision you have control over when you want that information. And same with the podcasting with the in-person events that we do. You know, you might not be ready to be in-person meeting people who are bald, or maybe you're bald, you just saw your hair and you don't want to see somebody, you know, with their like long blonde hair of you know, just crushing it when you find out that your disease is terminal.

4:51  
That's really interesting that you say that because when I went to get my tattoos on my chest, it was, that was one conversation that myself and Mary Jane had was she showed some other examples of other women's choices where, you know, they had the outline of a breast, you know, a design that kind of outline the breast, or something that marked the, the where the breasts were, and that for me was I wasn't ready for that, you know, I just lost my breast, I didn't have a choice and I needed to make sure that I. I was I needed to keep myself emotionally prepared and protected, protected, protective. Yes. And so putting something in the right place, you know, it's it's, you grieve it like a loss like you lost a loved one or, you know, something, a pet, whatever. You go through that same grievance. And so when you lose your breast, that's not your choice. It is the same process. You have to grieve it and I wasn't ready to go through that process and replace them that quick with, you know, I couldn't replace them as a real thing. I couldn't replace them as a reconstruction without more complications. So I didn't want to replace them with ink. So when I did my chest tattoos, I wanted it to be a beautiful piece. Not a breast replacement. 

6:17  
Yes. And so let's see that conversation a little bit further. You had a double mastectomy, or single Mastectomy or what was your.

6:27  
I had a double. So, here's a funny story.

6:29  
There’s always a funny story.

6:32  
Yes. Comedy, like it is healing.There’s never a sad story, let me tell you.

6:39  
So my dad bless his heart. Um, when I first started going through this, this breast cancer thing. He I was talking to him a lot, you know, he's he's my, he's my best friend. And so I was I had sat down with him and I was you know, he had gone to a lot of doctor's appointments with me and the the one doctor had said that the surgery itself. It's called a radical mastectomy. That's the technical term. And so my dad, he says, Well, you know, why get your second breasts removed? And because the first one was the one that we knew had all the cancer. And he said, you know, the doctor calls it radical. So you know, it's kind of a radical thing. And I had said, you know, I tried to interject, and he says, you know, for example, if you stub your toe, you're not going to cut off your toes. You don't stub it again.

7:27  
Yeah, and or all five of them. Right.

7:30  
Yeah. And I said, and I said, Well, but if I had if I could take out every piece that breast cancer could come back to or I could get breast cancer in, or cancer at this point, I would take out every part of that body part. I can't take out my brain. I can't take out my bones, I can't take out the liver, etc. So I'm going to take control of what I can control for cancer to come out of and so I you know, and after him watching me go through the treatment and And the chemo and you know, I mean, I was like deathbed almost. I think that you know, I putting words in his mouth, but I feel like he kind of saw I feel like maybe he understood more. It was like, okay, you don't you know, it's not just it's not like stubbing your toe and putting your toe off it's, it's more like preventative. You know, it's a it's a terrifying thing. And the first thing you want to do is take whatever opportunities you can to prevent cancer every company again, and they call it radical because it it's a mastectomy, they take your whole part off. So yeah, that's radical, but it's not a radical behavior. It's a radical surgery.

8:38  
Right. Absolutely. And remind me again, the timeframe of when you went through your surgery and you and Angela met, and I'm asking this in terms of framing. Did you guys have conversations around the decision of a radical mastectomy?

8:55  
I was basically single, and Angela and I decided that, well we started talking more about it. And she found out that I was diagnosed with breast cancer and, and she decided that she wanted to be the one to take care of me. And so.

9:15  
That’s a whole conversation. It really, really is. Who decides, like, I love this woman and I'm signing up for it. Let's go.

9:20  
Yeah, but people don't--we will get there--and we will. So Angela, you know, one thing that I had a friend tell me was, if somebody doesn't want to be with you, you know, because I'm one complication I had prior to Angela and I decided to be together. Before that was even a subject was what if I'm single for the rest of my life now because I don't have breasts. You know, you're a woman trying to date another woman who they're gonna want you to have breasts. That's part of what makes you a woman. That's one thing anyways, you know, it's a big thing. So when you don't have them, that's a very scary thing. You know? couldn't look at myself in the mirror. How do I expect some random stranger wants to date me to look at me in the mirror? So I had a friend tell me and I will PG this. But she said, if someone doesn't want to date you because you have no breasts because you lost them due to breast cancer then F them. And I said, you know, that is 100% true. And so that's so when I did, when I did it, Angela and I talked about it. She said, before she even knew that conversation. You know, she said, I don't care that you don't have breast, I care that you're here and that's what matters to me. So no breast with breast or no breast.

10:35  
That's exactly right. I just wanted, I just wanted you here. Yeah. We don't need those things. They tried to kill you. Totally.

10:45  
William I think you felt quite similar too.

10:47  
But they failed miserably. Yeah.

10:52  
I just have to say all of this, though, like, legitimately like, breast cancer is a tough conversation and on the podcast, and on YouTube and on Facebook Like, I am still vulnerable and you guys are seeing like me raw all the time. I like don't really do the makeup thing, I jump on when I need to say something. This is like life. I'm not sugarcoating it. I'm not saying like, Oh, I'm the perfect vegan or I'm the perfect vegetarian, I eat pizza, I drink wine, and I meet people. And this is life. So that's the context in which all of this is happening, especially when a spider tries to kill us. I'm so curious to know about the decision making process of deciding to one, opt in for a radical mastectomy when you knew that there wasn't cancer, necessarily other breast but you were taking this proactive choice and then to not do immediate reconstruction, or even longer term reconstruction. And I would love to share that a little bit with like my decision making process because I don't think that's something I've shared a little bit with the community either. It's interesting cuz I feel like these are like relatable topics right? Like, you get told you have breast cancer. You are given a plethora, maybe four options of what we can do. And there are recommendations and you don't know half the terms. I did not know the difference between a mastectomy and a lumpectomy. I did not know what this meant. And I was like, okay, maybe. And oncologists was like you're young. Let's try for the lumpectomy which is a, what, breast conserving tissue conserving nipple conserving type of surgery. Because I am young and we want to be able to have you have breast because you're a woman and we think psychologically to this might be like the better course of action. I'm like, okay, here's my male doctor telling me that I need to have breasts. Right, a whole other topic. I love my doctor. I'm just saying this to like after having so many so many so many conversations with women of even going through surgery and being a size larger afterwards, because the surgeon thought it was in her best interest right? Whole ‘nother topic right there, but it happens, right? These things are like gender specific conversations that need to be addressed. I'm diverging, though, from the decision of how do you decide what type of surgery you have, because during your cancer experience, you don't have a lot of control. But you do have a little bit of control over the type of surgery and to do reconstruction, to not to reconstruction. And for me specifically, I remember talking to William so this is why I was asking if you shared this conversation openly. It depended on the day, some days I was, you know, found a Facebook group: flat and fabulous. And they were like, empowering and like, you know, always showing these amazing pictures of you know, women's chest, the tattoos, the liberation and like I was embracing the fact that yes, I have cancer with this decision to you know, have a radical mastectomy not to reconstruction and never have to worry about it again, because my body is predestined for this. And I did not want to put other things in my body that weren't natural. And so some days I felt really, really empowered, like I'm doing it. And I'm excited, I can't wait. And then there were other days to talking to people of like, well, if I did reconstruction, and they're taking either like deep flap tissue, or taking like the lat muscle from your back to do the reconstruction, I was hearing interesting stories in my research of, yeah, every time I open the spaghetti sauce jar, and use this muscle, and my breast would twitch. Because your muscle from your back is now in your front. or anytime you do weird things like in your car, moving or like, I heard these interesting stories of like the muscle didn't yet pick up on the memory that it got moved. Oh, and it was flexing.. In weird times. And I'm like, interesting. Well, at the time I practiced yoga a lot, it was really important for me to stay fit. Like, what if? What if changing these body parts were no longer natural? And I just had so many questions. Yeah. So for me, I was like, well, if I had a choice, I would go flat. Right? Um, and I also want to share that it is so much easier to say, than do because I was no longer confronted with that option, because I was able to opt for a lumpectomy. So I also just say all this too, with like, oh, yeah, it's so easy for women to say like, whoa, if I ever had cancer, I would definitely do this. Yeah. And I'm like, but would you because you never actually had cancer. Right? And that is an educational, teachable moment. I'm trying to learn how to share with women of like, especially young women who you know when may well be diagnosed at some point in their life. So how do we have just nonchalant conversations with women about their breasts? Yeah, I'm waxing on about like, the choice and some of the topics even here of like, how do you make these choices? And how do you talk about it? Because it's not an easy decision. So I really want to stress, the deliberation that goes into this. And I feel like you and I, specifically, were given the luxury of doing chemotherapy first, to give us more, buy time to make a decision, right? Then someone who says, I just found out I had breast cancer on Friday, and on Monday, they want me to speak to a surgeon on Wednesday, I have to choose an operation, right? Because that's the other end that you don't have enough time to do your research. You don't have enough time to come to terms with the fact that you got cancer, right, let alone now that you have to go through this process. So there are so many factors in this, like, heavy topic.

16:54  
Yeah, yeah, no, you're 100% accurate. Um, when I had my decision was the second breast was it wasn't even necessarily, the percentage according to my oncologist wasn't higher or, or lower that I would get the same breast cancer in the second breast. But more so just that. Here's another, you know, here's another place for breast cancer to go. And in my head it was, well, if I've already been susceptible to getting breast cancer in the first place, what is stopping me from getting either the same breast cancer or another type of breast cancer in the other breast so not to mention I was very large. I had a very large breast and so to have the uniboob wasn't an option. I had to live with that for several months because when I had the chemo was unable to because of the chemo medicine. I wasn't able to get my both surgeries done same time, both for us and the reconstruction at the same time, so I had to just get the vital one out which was the one that had the cancer and then we could go from there. And so I had even more months to kind of really process that and decide. But what happened was then I ended up getting the radiation and because I had such a problem and complications with the radiation, it created so much scar tissue and they took, you know, I think some mastectomies even go a little less than, you know, some, some will go, just the breast, some will go all the way down to the bone and mine was dumb the bone so she took even the muscle out. So I really lost all of that. And so it was and then I built.

18:33  
Can you explain that a little bit more. I've never heard of this before. So the different types of mastectomies?

18:37  
Yeah. So with a mastectomy, they can take just the breast itself. They can even do like a half mastectomy, which is more than a lumpectomy. But, or they can just or they'll you know, they'll see that once they get in there, they can see that there's more cancer like in the tissue or they can see it, you know, in your muscle there. Things like that. So she saw my  surgeon saw it deeper than the just the tumor. But she wanted to make sure she was very thorough. And so she took just even a little extra to you know, make sure that we covered it. Yep. It was like, Okay, I see it from I see the the cancer stops here. But let's go here just to make sure we don't miss something.

19:20  
And is this a conversation you had with your surgeon in advance that when you're open? Right, exactly. I feel like this is a very important to have a plan because when they go in, they're discovering more. Yeah, that like in surgery, sometimes you just don't know before you go into the operating room. And they do now I think they have these contrast dyes and different things that they can test to see kind of like where the light up sections are to to see like, that's camels. Yeah, exactly like where the where the cancer is. And so I think it's really important to know that women who are going to have breast surgery, say, Yes, I consent to option one. This is what I want, but In these various scenarios, and you find something, these are my preferences?

20:04  
Right, and that was kind of how it was, you know, when it was it was like, we might have to go further. And I didn't necessarily I mean, yeah, I could say no, get out if you if you think that but in the end, she would have had to go back in and do surgery again, you know, so it was almost pointless to to tell her that she could have stopped you know, but she also had, you know, the breast surgeon I think, and I'm not sure if we were all breast surgeons, but for mine, I think she really aimed to make it look as nice and clean as possible. So, you know, she took it to wear down to as far as she could take it, and then also was able to try and seal it together and make it look the least mutilated as I would put it for that as she can and so she you know, so I then I have the radiation that created all of the the scar tissue and so when I talked about having the option, you know, she did when we were going to take my second breast, she asked about, you know, having the reconstruction person come in the reconstruction doctor and plastic surgeon and and because that's when they would do it, they would start the process then. And but the problem is that because of the scar tissue we'd have to go in, and it would be additional surgeries to take out that scar tissue and then we don't know that that scar tissue won't grow back in the process. So it would have been more complication options, more surgeries, more challenges. And for me, it was like, it's, it's not worth all of that, you know, I don't, if it was gonna be, you know, if I you know, maybe I would have had a different thought if it was going to be a cleaner version of process of, Okay, we'll just treat it like every other plastic surgery, reconstruction. And this is how it works done ended up maybe I would have thought differently but knowing that we were going to have to do for sure, additional surgeries, additional processes, which lead to additional challenges and complications. It was like why, why put myself through all that and extra time off work and all that for something that I don't even know is going to work because the scar tissue could grow back.

22:19  
I do have to ask, was this information given to you prior to your initial surgery? Or is it almost like because of these additional complications and the scar tissue already forming that it ended up being the default?

22:37  
I think it ended up being the default. 

22:39  
Yeah. I mean, I remember I think it was two. It was you know, there's so much that you're going through from just like what you talked about earlier. You know, you're you're getting diagnosed on a Monday by Friday, you're going in for chemo, and then you know, you're meeting with the surgeon. It's like, bam, bam, bam, which I understand. It's a very, you know, once you're just it's discovered that you have cancer, you need to get that out. Totally. Take care of I get that. And that's why I'm always pushing. It's so important to deal with it. Once you have gone through, and you have beat cancer, and you're in remission, okay, well, let's deal with what we just went through and what just happened. You don't have time when you're surviving. Now you're going, you're going, going going. And I can't imagine going, going going when you're going through chemo, and you're so drained and you're so tired and radiation, and it just exhausted you. And so many people cannot take time off of work.--No--they have to continue to work through all of this. You know, it's.

23:34  
How do you concentrate? I mean.

23:37  
Exactly. Yeah. Just Just a couple days ago, I had to go to the bank for business and went in and talk to the business teller to get credit card and stuff for business in I gave her my American Cancer Society card and I gave her my hip hemp card, which is the business that I work for, and we took care of all of her business. And she looked at me and she just started crying. And she said, I have a personal question. I said, absolutely, yeah. And she says, what do you recommend for somebody who doesn't have an appetite? You're going through chemo? You know? And it's like, oh, my goodness. I mean, and that's it goes back to what you were saying that. Any place, you know, you try to bring in your breast cancer anywhere, because you just never know who you're going to help or who you're going to make a difference to in their life. And so not only did I walk out taking care of the business that I was there for, but I've also just helped somebody newly diagnosed with breast cancer.--Yes--you know, and not only did was able to give her my personal information, but I can give her american cancer society.--Exactly.--Give her your information, surviving breast cancer. Alicia's information. Hey, she's your survivor. Yeah. And she's recently diagnosed and it was like--Oh, absolutely.--It's amazing.

24:55  
You're you're opening the floodgates here. You're welcoming the conversation.

25:03  
Which is why I feel like when I when I found your podcast Originally, it was amazing. I looked at your page, I talked to William, which I didn't realize it was William. And it was fantastic because we have been so deep with American Cancer Society, and because of all the morals and values and everything they stand for, and then I found another organization that did the same and it was, you know, strictly breast cancer and it was, why not, you know, it was like, Oh my gosh, this is, this is what I try. This is what I try to do by myself, why not become part of and help out and join forces to try and do the same job that we both are trying from different sides of the stage hundred percent.

25:46  
So much happens after the fact. Like you, you do your research, if you have time, and you figure out like what type of surgery you want. If you want reconstruction. If you want reconstruction, you figure out what type of reconstruction you want. If you want to use your own body tissue or if you want to have implants. And then you have all these other options that are after the fact that can force you to not have reconstruction and force you to be flat. And I feel like you're embracing this in such a great way. So I love that. But not everybody feels that way,--absolutely--is a constant reminder that something failed, something's not right. And this is the consequence. And I think a little bit about that, from the perspective of having a lumpectomy and choosing to do the radiation, knowing that in the event that should there be a recurrence, and I would need a full mastectomy. My skin tissue might not actually be able to expand so that I could have reconstruction, right, because the radiation kills your skin cells. It might be dead of some sort. Like I don't really know the technical terms, but like I know that by making the choices that I've made, I could potentially be limiting choices down the line. And that gets into a whole psychological issue of like you made the incision for today for tomorrow for 20 years from now. Like how do you know. 

27:16  
You know, what made it easier for me personally was because I was limited in having the ability or the quicker ability to have more to have breasts because of the complications and such. I lived with you know, I had an amazing at the time girlfriend who was so supportive and so okay with my mutilated chest. You know, we weren't able to get the second side to look as as good as this as the first side and cancer side. Surprisingly.

27:57  
Mine too.

27:57  
Yeah.

27:58  
My cancer side looks amazing. And I feel like they got tired by the time they got to the other side.

28:06  
Mine restarted over completely so what happened. I think my surgeon had a bathroom break.

28:11  
It’s amazing what you discover. 

28:14
And then I had a part of my skin that actually like came apart from the muscle. So I have this flap here that just I hate, you know.

28:22  
You still do. 

28:24  
Yeah. So I can see a surgeon about that and get that taken care of. It's just for me, it's taking more time off and it's another surgery and so it's not but you know it for me it was I couldn't pass through the mirror. I couldn't look at myself. I couldn't, you know, you're trying to be intimate with your partner. And while they tell you, oh, this is great, etc. You know, I'm okay with it. In the end, you know that you're not okay with it. So are they just be nice? You know, it's like, do they really feel okay with it? Are they trying to just be a decent human being and say, Oh, no, no, it's okay. But reality. They're like this is kind of gross because I think it's gross all myself not know you know but it's different if I see a woman I'm not intimate with that woman you know? And so it's like I look at myself I'm thinking that's gross so what I had the option when it came to me to do a tattoo over the scars in any design that I wanted in any shape I wanted and insurance was going to cover it I thought that's that's perfect I felt you know, okay we're going to cover it up I'm gonna you know I can be in denial all I want I can pass through the mirror and and know that it's not I don't see that mutilation and when we look back at pictures and we see we see you know, the the raw to the now tattooed it is night and day, I think, Oh my gosh, I forgot what that looked like. And so it is now in it. Yeah, now I can I truly feel like for me, I did the right thing.

29:55  
Yes, when you can feel good. That's what I tell myself to like when I came to terms with my decision I felt like I was aceing it. Like everyone's gonna have an opinion because they always do. Even if you don't want it, they will let you know. 

30:10  
Oh yeah, but don't do chemo do Medicaid. I have, like you were saying if Yeah, oh my gosh, how many times I was told if I had cancer I wouldn't do chemo because I am no chemical and I do this. Okay, well when and if you ever do get cancer, you do that, you know then good for you. But I am going to do this and this because I have looked into it and I trust my doctors and you know what it was? Oh, I wouldn't have surgery. This is what happens when you've had surgery. You know, people have died. Okay, great. When you have cancer living inside your body that's killing you. That's a great option that you have that choice of doing, you know, for me? No way and you cannot tell me that that's what I should do. Because you have no dang idea.

30:51  
Alicia, describe your tattoo. They're beautiful. For those of you who can't see. 

30:55  
So my tattoo is of I picked two birds, and not because of bread because like I said, I didn't want to have the shapes of, I didn't want them replace my breasts. I picked two birds because they were from my grandma, my I had my dad's mom and my mom's mom. And they were two very special women in my life, who took part and taking care of me, who took part in in creating who I am today. And so but they both have passed away and and every day I wish that they were were there and they were able to be with me through that cancer diagnosis because I feel like things would have been different in a little the emotional side. It's like, if you lose a parent, you just wish that they were still there to hug you and hold you until it's gonna be okay. So when I had a choice to to have these tattoos I decided that I would pick to replace them to place my grandma's and one is a bird carrying a Alzheimer’s ribbon, which happens to be anybody who's a lady balls fan and knows a Pat Summitt. She was the legendary coach and how Tennessee has gotten me through so many sad moments and and tough moments in my childhood just growing up and nothing fell short of that throughout my cancer diagnosis and so when Pat Summitt was diagnosed with Alzheimer's around the same time that I was diagnosed with my cancer, I felt that she had this this foundation and she she did that when it was an orange ribbon and everybody who, who sponsors it, you know, they were the orange ribbon. So because she was my hero and my all time just idol, I guess would be the most appropriate. She, I thought, connect that with my grandma who passed from Alzheimer's and I and orange being like my favorite color of life. In fact, our wedding colors, I got to have orange in it. So that was fair.

33:00  
It was great. Orange and grey

33:02  
So the fact that I was able to have that I felt that it fit so perfectly to have the orange ribbon be the Alzheimer's ribbon for my grandma, my other grandma had passed from ALS. It was very fast. And it was a probably that was the biggest loss that I ever experienced in my life prior to cancer. And it was the sadness loss for me and it's something that I still struggle with, but I thought, how great if I felt like I had my grandmas with me, throughout everything I do, you know, it's there are over there. They're near my heart. When I look in the mirror and I see I don't see the scars, I get to see something that makes me think of my grandmas and that meant more to me and was something that I could turn something that was ugly and negative into something that's beautiful and has a completely different outlook on on that whole entire subject.

33:55  
I don't think it's ugly at all. I just never have I told Laura the same thing. You do what you want, this is your body. And you made a wise choice, Laura made a wise choice. God bless you.

34:09  
Well, we all make wise choices, it's our choice.

34:14  
When it comes to cancer, you don't have that control if you can, if you can, can, if you don't have, when it comes to cancer, you don't have control. And if you can have one tiny little thing, which may not be tiny, but out of the whole giant picture, it is. It is tiny in some aspects, but you can have something that you can control, you will grasp that and you will make that choice and you will say, this was my choice and you make a big deal about it because you don't have a lot of choices in the cancer treatment.--No, not at all.

34:46  
I think for me at that time, when I found out that Alicia had cancer. That's when it hit me that life is too short. And I knew that I loved her and I wanted to take care of her. And I wanted to be the one to take care of her. And being a caregiver. It's difficult, it's hard. It's a it's a hard journey, trying to understand what a cancer survivor is going through. We can never understand less if we go through it ourselves. Me personally, I did as much research research as I could, asking questions and trying to understand. But it's still it's never the same unless of course, if I go through it myself, I wish that there was a manual that explained everything. If I could, if I could say one thing. Just communicate, communicate, communicate. There was a few things that I did that I regret. That I wish you know, I could have, maybe have been there when I wasn't there, or did things a little bit differently. But being a caregiver, that I was never a caregiver to that extent before in my life. And so it was important that I continue to communicate with Alicia, that she understood why I did what I did or the decisions that I made. And to definitely take care of yourself. You see, you cannot take care of anybody else if you don't take care of yourself either. 

36:14  
You know, I'm just real quick. I always say that the hardest part of a cancer journey is the cancer fighter. Hands down, but sometimes equally as hard of a job. Is the caregiver. That is this. I mean, they have to be, yeah, the animals a little more humble. But they have to be strong when we're not and when they can't be or they don't want to be. We can we're expected to cry. We're expected to break down we're expected to say we're too tired to get up. I couldn't do my own drain tubes because of my stomach. She had to do it and she didn't have to. But she said she thought she thought she had to so she did it. Well. Whether she could stomach it whether she was too tired, she got up and did it and people don't understand. 

37:08  
No.

37:10  
that's all right.

37:15  
People don't understand how hard that is to try and be there for somebody who is dying or thinks they're dying or can't get up or can't help themselves. You know you want to help yourself as the fighter you want to. But you sometimes you just can't because of the treatment and when you have somebody that's trying to second guess and know what you're going through and want to help you and they don't and they still do it. It's amazing. You know, it is so hard to be a carrier I couldn't imagine I you know, I I'd say I can't imagine being the cancer fighter but it is so hard. You know, my dad used to always say, who's there for Angela who was making sure she's okay. And it was, I couldn't I wasn't strong enough. But somebody had to be there for her. You know, somebody had to make sure that she was okay. Emotionally, physically because you're watching the person that you love. And in some cases people do you know, they are dying. These caregivers are having to watch these people die and your loved one, how hard would that be, to do that. So you know, you think about that and it is incredibly difficult to be a caregiver. So she has regrets and stuff and yeah, some of those are very personable. But I think that.

38:47  
Regrets in terms of your ability to be the caregiver, yeah.

38:49 
missed opportunities, you know, or deciding to do. Just trying to think You know, that this would be better for me to go this direction where it wasn't the right way to go. 

39:09  
It's very hard you don't know. And that's one thing. That if I could say anything to a caregiver right now is just do the best that you possibly can and communicate, communicate.

39:21  
Communication is key. What a powerful story and way to conclude today's podcast, Alicia and Angela, as always, it is such a pleasure to have you on breast cancer conversations and thank you for your continued and ongoing support. Thank you also for opening up about surgery, the brutal decisions that needed to be made and how you both are able to come together even stronger. And thank you everyone for listening to our show. I would like to acknowledge that all of the information on our podcasts are from personal experiences, and are not a substitute for professional medical advice. You should always contact your medical care team. If you're looking for specific topics or would like to be a guest on our show, please feel free to reach out to me. My email is Laura at surviving breast cancer.org. Until next time, keep on thriving.

Transcribed by https://otter.ai