The Challenges of a Young Adult Affected by Cancer, Facing Mortality Head On, and Dating After Cancer

Salma Harfouche, A colorful and intrepid heart cancer survivor, is a branding expert (as in marketing, not cows), and cow lover (as in friends and hamburgers) also loves puns as much as you do.

"If they dig you, they're totally open to having that conversation, and they're probably gonna appreciate it, honestly." Can you relate?

Join Everything Cancer to be part of the conversation with Salma (Sal) Harfouche. 

Sal dishes on:

• The frustration with knowing something was wrong and not being diagnosed
• Facing mortality
• Survivor guilt when others did not make it
• Body image changes, dealing with scars (external and heartfelt)
• How therapy and shared experiences make a difference
• Dating after cancer
• Being upfront with potential romantic interests about being  a survivor and the accompanying issues (such as infertility) before the first date
• Pain with sex after cancer
• The side-by-side lanes of blessings and survivorship issues, and dynamic switching of lanes, wrenching herself back into the blessings lane
• How Sal came to love having cows put their head in her lap (she does not whisper to them that she loves burgers). 

Transcript

Jill: Hello. Welcome to Everything Cancer, the empowering podcast for the cancer journey. I am Jill, your host, a long-time certified oncology nurse, cancer support group facilitator, and person striving to get the word out there about the proven power of effective self-advocacy on the cancer journey. This podcast is designed for those on the journey, those who love them, and also for providers to offer them a fresh and enlightening perspective. We have an engaging and warm spectrum of guests, from survivors to providers both very inspiring, and cancer support organizations that offer amazing services, and to hear about managing symptoms and gaining a higher quality of life. 

We've got it all. We'll be discussing rekindling intimacy after cancer changed your world. We'll break down practicing self-advocacy into easy-to-do, bite-sized pieces. We'll talk about Everything Cancer. The Everything Cancer podcast is not intended as a substitute for medical advice. Please consult with your healthcare team about any concerns you may have. 

The Everything Cancer podcast staff will not be answering any health-concern questions. Thank you. Hello, everybody. Welcome to Everything Cancer, the extra-large suitcase of the cancer journey. Today, we have an extra special treat with Salma Harfouche, who goes by Sal. She is a marketing and branding specialist who happens to love cows, so we're going to hear about that, and has an amazing sense of humor and is an incredibly vibrant person who has been on an incredible cancer journey and is continuing on it. And so we met on LinkedIn when you remarked to someone who was talking about fighting cancer, that people remarked to you that you are so strong and you responded back, I'm not strong. I didn't have a choice. And I responded to you. I would argue that as you chose to be engaged in your care and work with your cancer care team. 

Sal: Yeah, and I think that gave me so much to think about. Honestly, I've had people like my friends say, I don't know what I would have done in your situation. I don't think I would have been able to have handled it the same way. And I would always say, I feel like I never had a choice. 

It was one of those things where you have two options, right? You're either going to do nothing and die or just try to figure out what was wrong with me. And I think I'm just naturally the type of person that is super curious and I hate the unknown. I, oh my God, I hate unsolved mysteries because I don't know what happens. They drive me insane. 

So I think that drive to just find out like what is actually going on. Everything in my body was perfectly fine. And we'll definitely go into why I didn't show other symptoms in a little bit because I definitely think that's important for other types of cancer too. And also, I just know how much my parents love me. So I did it for them. 

Jill: I love you. You know what I mean? I was like, well, I can't just die. Like, my mom's going to be so upset. So like, let me go try and figure it out for them. And also too, I was going to the gym every day. I was trying so hard to just be my healthiest self and to put so much effort and then not see any result from it. 

I kind of was like, okay, this is weird. Normally when people work out, they lose weight. I was unable to lose weight. 

No matter how much I went to the gym, I went every day and I did cardio for like one or two hours every day. Which they have. Yeah. I was like, yo, I could have really pushed myself into a heart attack, but my oncologist was like, actually, I think that made your heart stronger. So you were actually able to fight the tumor better. 

So I was like, okay, good, good thing. I was me being crazy worked out very well. So I think a lot of it was me really wanting to prove something to people because I had so many doctors gaslight me. A lot of them called me a hypochondriac. 

Sal: And at that point I was so angry. I wasn't even sad. I kind of expected to get diagnosed. I didn't think it was going to be heart cancer. I actually thought it was breast cancer because one of my breasts, like all women, one is bigger than the other. But it's such a huge difference. And it comes to find out that my tumor hindered the growth of like one side of my body. 

So one side of my body is a little shorter than the other. But I would have had no idea. I just thought like, oh, this is normal because we get to all the time. This is normal. And sometimes it's not normal. 

And I think if we just validate people a little bit more, I think it would go a very long way. You know, I'm honestly, I'm totally okay with dying and I've always been okay with dying. But my biggest fear was dying from being sick because I've seen people go through hell. And the reality is it's not even the sickness that brings upon this, this kind of dread. 

It's really the way it's handled by health care professionals, your family, because they just don't understand. So for me, it was like, you know what, I'm not going to go down without a fight. Like I'm going to be out here kicking and screaming. 

And I really do think that drive to keep me going was more of just like an ego thing. Like I just wanted to be right. So people are like, you're so strong. I'm like, listen, I'm just angry. I was just so angry because when you know something is wrong with you and people like make you think you're crazy, it's one of the worst feelings to have. Yes, it really is. You start to question your sanity big time. 

Jill: Well, one of the things we talked about before we started this interview, which is kind of segues into what you're saying is documenting your symptoms to be able to present a data driven big picture to your providers. Yeah, you talk a little bit about that. 

Sal: Yeah, so that definitely the way I advocated for myself has changed drastically throughout the years. My first time when I was 17 that I decided to go on my own. And I was so gaslit. I was so gaslit. He was like, I brought up the fact that I would be sleeping like at that point it was probably 10 hours every day. 

And I would still feel so fatigued. And he was like, well, that's normal. You're growing. You're in high school. You're studying. And I was just flat out like, bro, I'm like almost failing. Like I'm definitely not studying that hard. Like this is not me. Like I kept trying to reason and flew over his head. 

Jill: So he's thinking it's normal teenage angst that you're saying you're fatigued. And meanwhile, your ass is dragging like really, really bad. And he's not he's not getting it. 

Sal: Wow. He's not getting it. He's not getting it. It really started to get really bad when I was 19. So I was going to someone new every single month when I was 19, which was hectic because I was going to college full time. And I had to tell my professors, I was very honest. I was like, listen, there's something medically going on with me. 

Nobody believes me. I cannot come to your class today. I need to drive two hours away to this appointment. And that's what I would do. I was labeled a hypochondriac drug seeking faking it. Literally whatever they decided to throw at me. 

Jill: Right. And you're amazing. So someone you facing the providers that you're seeing, the doctors you were seeing, and you're telling them this probably 99 out of 100 people walking into their office saying what you're saying. 

Sal: But yeah, my cancer didn't spread because it was on my heart. But I lived with this for 20 years. Wow. It was anywhere else. I'd be dead right now. I would have probably cancer all over my body. 

Jill: Sometimes I'm like driving. And I'm like, Oh my God, like you had cancer. It's such a it was so surreal for me because it happened so young. Right. And it happened so fast. I'll break down the timeline a little bit later. It happened ridiculously fast. 

I think I got diagnosed June 14 and I got my surgery June 28. That's how dire my situation is. They were like, I don't even gonna do chemo. You have a ticking time bomb on your heart. Like we need to get that out now. And I'm glad my doctors listened to me because I told them the first moment that they showed me my mass on the CT. I was like, can we just get surgery? Can we just remove this? 

Cause I don't feel like doing like, let's just remove it. I've never heard of another situation like mine to be honest. Most Lyomao sarcomas, which by the way is hilarious. That name is hilarious. When they told me I had Lyomao sarcoma. 

I started dying laughing. I was like, what kind of name is Lyomao sarcoma? I thought it was fake. I was like, Lyomao what? Lyomao sarcoma. But it was of your heart. I mean, that's the thing. It was of your heart. 

Sal: They usually get it in the uterus. 

Jill: Right. I was just gonna say the uterus. Which gives me anxiety. That wasn't where it originated, but all it takes is one cell. That's so scary to think about, but all it takes is one to go rogue and just go undetected. So you almost passed out one day, right? Or you actually passed out. And that got you into an emergency room, right? 

Sal: Yes. That's exactly where I was gonna go to. So in 2018, I was 20. I started to experience this really weird sensation. I would walk just 10 steps, which is crazy. It's just 10 steps. 

Yeah. And I would start seeing tunnel vision and then just flat out black. And I was like, okay, but I'm still conscious. I really want to just finish this degree so I can, because that was my last class before medical school. Wow. 

Jill: Wow. So close. And I was like, no, I just want to finish this class. Thank God I went. I went home and I napped and I felt better. But something kept telling me you need to go. So I was like, mom, let's go to this different hospital. 

Let's try a different place. So I went in there and I was like, listen, I'm having a pulmonary embolism. So I did tell them that and they without hesitation, without even blinking, they were like, okay, yeah, sure. And they gave me a CT scan. 

Sal: And it was just like, wow, like I tried so hard the last 20 years and I just went to this one place. So for me, it's like, and now I see advocating so differently. Now it's not this like uphill battle. Now I see it more as like, it just takes one person to change your life. 

Just one. So even if you have to go to 21, that 21st might be the person that listens. So, you know, that's not to say I don't, that's not to say I don't still experience gaslighting because I do. But I kind of know how to handle it better. And I hate to say it, but once you have history, they listen more. Yeah, I hate it. I hate that it's like that. But once they find out, okay, this girl had heart cancer. 

Yeah, we need to check all her organs like now. They're just very paranoid, especially now that I have the pacemaker and I just recently got it. I got it in October and it's been rough. 

Oh my God, it's been rough. I went through two heart surgeries at 20 and honestly, that was a breeze. But actually getting the pacemaker and changing my valve was way harder and I'm still recovering, still getting weird symptoms. And I still have to fight with doctors right now to figure out what are these weird sensations I'm feeling post surgery. But I think like you said, once you start advocating for yourself, it just gets easier because now you know what to say, how to log your symptoms, which is why I think your book is so brilliant. Thank you. 

A lot of people don't know how to advocate so they don't do it or they just like don't want to because they have so much anxiety around it. Right. And I can understand that because honestly, it's not our fucking job. Like, oh, sorry to get all cursing. It's okay. 

Jill: It's okay. This is for real. Yeah. There are some situations where like, maybe you can't 100% fully make it, beat it, but you bought that time to spend with your family. 

Sal: And I think personally, it's kind of morbid. Any of us can die. Yes, we can. Any second of any day. 

Jill: It's not morbid. It's like our health. It's life. It's life. 

Sal: And it's just like, at that point, then I actually rather get cancer because I can say bye to the people I love. Whereas in a car accident, you don't really get to say goodbye. So I think that kind of reframing is really important to you with advocacy. Right. Because like, you shouldn't see it as like, oh my God, I'm basically fighting to get a death sentence because you don't even know if it's a death sentence. Right. You know, and my situation, it wasn't. 

Jill: I mean, it's totally different from your situation, but look at the metastatic lung cancer and metastatic breast cancer medications that are out there now where people are living for years with metastatic cancer. 

And but it is beautiful. But in those instances, it is so important still to track your symptoms or if you have survivorship issues and symptoms from your previous treatment, acute treatment, you need to communicate that so that you get help with those. So you have a better quality of life. And like you were talking about your friends that some of them ended up with three years instead of three months. But hopefully those were three years where they had a good quality of life and their symptoms were well managed up until, you know, it just was taking over. And that communication with your doctors is so and with all of your providers and tracking your symptoms is so important. 

And quick interruption. The book is on Amazon and it is called Cancer Journey Guide and Journals Empowerment in Diagnosis Treatment and Beyond. Jill Squire, you can find it on Amazon. 

It's blue. You can't miss it, but let's go back to you. So my gosh, so you had this, this, they did the scan and then they sent you to a heart surgeon, right? 

Sal: Oh my God, you just reminded me like the journey was nuts. First of all, everyone go get that book. But even if you don't have cancer, I think that could that book could be very, very valuable because there's people out here dealing with so many diseases. They have no idea how to track their symptoms. They have no idea how to even express it or communicate with their doctor. At least that, you know, at least if you're noting everything down in the book, you can just hand it to your doctor and be like, Hey, this is what I've been journaling. 

Do you think you can just look through this and maybe we can figure out what's going on? It's really important to stay on top of your symptoms, especially after survivorship because the reality is we have recurrences. We do. 

It sucks. And for someone like me, my cancer types, sarcomas are really aggressive. So the likelihood that it'll come back is pretty high and I'm not a pessimist, but I am a realist and it gets dangerous once you're stage three or four. So I think if you get this book and you're really diligent on tracking things, it's going to be way easier for you to, you know, see any of the red flags and be like, Hey, this is what's happening. Let's take some action. 

Jill: Thank you. I appreciate that if you don't get the book, if you log everything, if you write everything down, if you journal it. That's so important. The book walks you through steps of self advocacy. But in any case, back to you, Sal. And your story is so, it's okay. Your story is so amazing. 

Symptom management, feeling good, well being, wellness, engaging in life is so important at any point on the cancer journey from diagnosis to 100, whenever. And that's you taking your life back. That is you saying, I'm going to be engaged and I'm going to enjoy whatever I can, however I can. 

Sal: Yeah, 100%. It's a difference between being an agent in your life and just letting life happen to you. Exactly. Because like, listen, we're all going to have life happen to us, but the least you can do is kind of just step up and be like, I'm not going to, I'm not going to be someone that just lets things happen to me. I'm going to actually be an active participant in making my life better. 

Right. You can go through cancer and have the best mindset, be so happy. And that's how I felt when I was going through my cancer stuff. Like I wasn't scared. I wasn't even sad. 

Honestly, I didn't even cry and that might have been from shock, but I also just felt like, what's the point? Like that's not going to help my situation. Like I think the best thing I can do for myself is enjoy my family, watch a bunch of scary movies. So I can see someone going through something worse than I am, which actually helped me. 

Jill: Seeing someone else get murdered. I was like, yeah, I'll take cancer. I'm good with that. And I think just really embodying yourself into a healthy mindset is what's going to help you survive it. And I do think that tracking your symptoms and stuff like that, even though it seems a little bit like Debbie Downer, actually, I went to that hospital, got a CT scan. And I think right away they realized like, we can't help this bitch. 

There's nothing we can do. They realized it from very early on. So after the scan, they were like, Hey, we're going to have you stay overnight. And that's what I knew. I was like, okay, we found something. 

Sal: Yeah, something. The next morning, my cardiologist, who I still see, she comes in and she is like, I guess I could see from her face because I was really young. She was like trying to handle how how to say this. 

Sal: Yeah. But you know, she started off very calm and nice. And I was like, so what's going on? Like, what do we do? What do we need to do? What what is it? Like, well, how do we do this? 

How do we fix this? And she was just like, wow, okay, this girl just wants to get this solved. And I was like, yeah, dude, like for me at this point, I already knew I was sick. I just wanted to know what the heck it was. Right. 

She was driving me inside. Right. For years. 

For years. I was just like, what is it? What is it? Turns out it was my heart. Wow. When she showed me the CT scan, it was crazy. The tumor was 17 centimeters, which is huge. Yeah. And it actually moved my heart towards the more of the, like the side of my body. Wow. 

Jill: Yeah. I could see where it would shift it. 

Sal: No wonder. Crazy, crazy. And I saw, I saw the scan and I started laughing. I just don't handle things well. I just laughing. That's just how I am. Everyone looked at me like I was psychotic. Um, you know, I explained to them like, I'm just really in shock right now. And I thought it was something, but I didn't think it was going to be this. Right. 

Jill: So that's bigger than this mug. Yeah. It was huge. You know, pushing against your heart. 

Sal: Yeah. The thing is it was on top of it. And that's why I started to get, you know, those blackouts because it was, it was not. It couldn't pump. 

Jill: It couldn't. The ventricles couldn't refill with blood because there was too much room being taken up and it couldn't. Yeah. Yeah. My gosh. Oh my gosh. 

Sal: Yeah. Oh my God. Still to this day, I'm like, Oh my God, this is crazy. Yeah. I've been six years ago and I'm like, for me, I'm still shocked because it's just like, I've never heard of this in my life. Um, would love to make a movie about this one day. I think we make a great horror movie, but 

Jill: you have to have cows in it though. I will. Okay. But in a nice way, in a nice way. 

Sal: Yes. They're going to be like, and it's interesting because during my cancer battle, I actually didn't use cows as like my spirit animal. I actually used flamingos. 

Jill: I love it. I love it. 

Sal: I had like everything flamingo and I was like, well, I didn't even really understand why my mom kept bringing me flamingo things because she's just like that type of person. Like I'm just going to bring you things. I'm like, Oh cool. And it was all flamingo themes. So I was like, okay, maybe she knows something that I don't. Turns out they're very resilient creatures. 

Jill: They are. And they're always upright. 

Sal: They're always upright. Yeah. So my mom was like, this is perfect. Um, at the time I was just like, flamingos are cool. So for me, because they've never seen this before, even my cardiologist has never seen this before. They didn't really know what it was. 

They were like, maybe this is assist. Maybe it's benign because to benign heart tumors are a thing. They're rare, but they're not as rare as, you know, malignant ones. So they totally thought this was not an emergency. Um, they actually, ooh, they, so mind you, I've never had a cavity. 

I've never had anything happen in my life. So the next day she comes in, she's like, listen, we're going to drain your heart. Like we're going to drain the tumor. Oh my God. I was like, yeah. I was like, okay, cool. I never, I thought it was going to be asleep. I was awake and it was like a huge, huge needle. And I was awake the whole time and this was like a horror movie. This was the worst experience in my life. I was like, this is really traumatic. Um, but I'm actually weirdly glad that that was one of the first things because it made everything else easier because the rest, that's an interesting perspective. 

Jill: Yeah. 

Sal: I was the worst, I guess situation. You got out of the way. Yeah. I mean, the rest kind of feel a little bit better because every time I go into procedure, I would think about that freaking needle training thing. They're literally stabbing me and I'm like, oh my gosh. And the freaking radiologist is like, don't look down. Just look into my eyes. I'm like, bro, you're wearing glasses. I see everything. 

Jill: I just see it reflected back. Did you say that to him? 

Sal: Oh my gosh. I feel less nervous when I talk to the doctor while they're doing the procedure, but like they need to concentrate. The next day, literally the next day, the tumor refilled with fluid. 

Jill: So that wasn't all for nothing because then they knew something was really hot. They knew something was really hot. So yeah. 

Sal: They were appalled and they're like, okay, I need to just get an open heart surgery. I woke up out of that surgery thinking I didn't have a tumor anymore. I was so happy. And then they came into the room with their leg. Listen, we have some bad news. 

We opened it up. Our surgeon here actually used to work at Memorial Sloan Kettering and he saw your tumor and he was like, this is, this is cancerous. This is no way benign. Yeah. So they closed me back up. 

Jill: Yeah, that happens. It sadly happens, but they also knew when they were in over their heads, which is just as important to be honest. Totally. It is so important. Totally. 

Sal: Cause he was like, listen, even though I have the expertise, like I'm not going to do that for you cause we're just not a cancer center. So at that point they were discussing whether to send me to Mayo Clinic or John Hopkins and got into Memorial Sloan Kettering. Went in there, I want to say like maybe June 10th. And of course, as you know, pathology takes forever. 

Jill: Yeah, it does. It's very frustrating, but they're doing their job right, which is why it takes so long. It takes so long. 

Sal: But it's frustrating. All like pathology takes forever. I'm like, listen, they have cultures that they have to dissect throughout like a period of days. They got to see what, how it acts within a few days period to be able to diagnose you. So I understood that my parents didn't, they were very frustrated, but I kind of explained to them like, this is the way it is. 

We just have to wait. And it's so funny cause I felt like I was the adult in the situation a lot of the time. You know, I was the one that was, and God bless my parents cause they're very, very positive people. They never once cried in front of me. And I'm sure they, they did cry hysterically, but I'm sure. 

Never in front of me. They were always joking. They tried to keep me in good spirits. And I think that's such a huge thing when you're going through this, like you need to stay in good spirits. 

Right. I don't care what you have to do. I smoked a lot of weed during my whole cancer journey. No regrets. I feel like it made me so happy accepting, I would say. I'd be like, okay, well, I'm in this situation, but I can't help but giggle cause I'm high. So for me, it was like, I was able to eat. 

I was able to keep myself happy. And being able to eat during chemo is so important because I feel sad. And it's just get high dude. 

Just eat some food, get some munchies. Colleges ended up getting formally diagnosed by MSK on June 14th. And they actually did not want to do my surgery. They were like, listen, we think if we put you across the street with this really, really top notch heart doctor who has also taken out tumors before, we think he's going to be able to help you more. So I got sent from MSK to right across the street, which is NYP, New York Presbyterian Wheel Cornell. And my doctor was Dr. Gerardi. He's incredible. 

Like, I fan girl over him. So my IP was just so fast. Um, diagnosis date was June 14th. My surgery was June 28th. Wow. So fast. And I got discharged from the hospital July 5th. This was like two weeks. It was crazy. 

Yeah. It was crazy. I feel like from May 31st to July 5th, everything happened. 

And it was just like, holy cow. I've never experienced anyone else that goes through such a fast process when it comes to treatment. So that's kind of made me realize like your situation was really dire if they really felt like they needed to move it that fast. They wanted to give, they wanted to wait until, and actually my scars a little interestingly shaped. There's like this open part. I had four cycles of chemo in total and then one month of radiation. That's it. I've been good ever since. Wow. 

Jill: Yeah. So you've been good ever since. Yeah. But there's ending treatment and thinking everything's great. And suddenly you're on the journey of survivorship. And I think a really good way to segue into that is what happened with you and your boyfriend. 

Sal: Oh yeah. Yeah. I was with someone for five years at that point. So that was like most of my life. Yeah. I believe we started dating when I was like 17 until 21. 

Jill: Wow. So we made it a very long way. And that was my best friend. That was like my everything. That was the person I thought I was going to marry. And in the beginning he was insanely supportive, especially when I was in the hospital. 

Sal: But our relationship really started to fall apart when I started going through chemo. I lost my hair. I know so many of my friends or colleagues or even people in support groups that say losing my hair was the hardest part of cancer. 

Jill: Yeah. It is. It's a very hard thing to go through. I was so excited to be bald. I couldn't wait. I've always wanted to shave my head. My parents were like absolutely not. So when I went bald I was like, yo mom, I look fly. Like I felt good. I loved it. 

But I can't. It was weird. I feel like I had such a beautiful rebirth and more confidence than I ever had. And I felt like I was really growing into myself and trusting myself. And oddly enough, me changing, being more independent actually ruined my relationship. I was no longer depending on this man for emotional support and all these things. And he started to say, well, it feels like we're friends now. It doesn't even feel like we're in a relationship. 

Sal: And it was hard for me because they never tell you this. But when you go through chemo, your vagina does not work the same. It does not. I lost a period for a year. And then now I don't really have one. It's on and off. But I did lose my period for a year. And all of the membranes in there kind of dried up. So having sex was agonizingly painful. 

Jill: And I really didn't try for my partner. I was like, you know, I could do this. I was like, I'll just deal with the pain. I'm already in pain. 

Sal: But like that pain was so tremendous that I was like, listen, I can't do this. And I think for him not having the physical intimacy because I didn't want to hug anyone. Like I had just gone through chemo. 

Like I want to lay in my bed, chill, be stoned and just relax. And he just couldn't understand that. And I get it because he probably had a lot of emotional things going on at the same time. And I couldn't be there for him. 

But that's because I was trying to be there for myself. And I just, I do feel like cancer can really kill or like in light in your relationship. Your partner is either going to stand up and be there for you and hold your hand through it and prioritize you instead of looking at their feelings. 

Or they're going to get so consumed by their experience throughout the whole thing that they kind of forget that like, you're the one that has to go through these things. 

Jill: There's that. Yeah. Right. And then there's also the shift of romantic partner to caregiver. Yeah. And then how do you go from caregiver back to romantic partner? Right. That's a tough thing. It's a tough, it's a tough pill. 

Sal: It's a very tough thing. Yeah. And I definitely think, you know, for those that are married, it's such a good idea to go to counseling for them. Like go, go see someone before you even start. Treatment. 

Yeah. My opinion, like before you even start anything, like that's just, my biggest mistake was not getting a therapist during treatment. I got mine after treatment. 

I feel like I really, even though I was happy during my treatment, I really think I could have benefited from having a mental health professional being like, okay, but how are you really feeling? Right. Like, you know, I get that you're going through all these things and because it happened so fast, you don't have time to think about your feelings. 

Right. I didn't have time to sit and be like, damn, like this is really happening. I was just like, okay, what's the next step? What are we going to do? 

How long does it take for me to get back to school? Like my mind wasn't anywhere around my feelings. things. So I feel like a lot of us in the first place don't know how to process these kinds of things and to have to process it with a partner makes it even harder because it's like how do you process these things with somebody when you can't even process it with yourself? 

Jill: That's gold guidance to get a therapist to see somebody and a lot of you know for some people that's out of reach for them financially because they're coped they're already doling out a ton of co-pays for treatment but a lot of cancer support organizations that are local will offer free counseling up through successions and even those successions yeah even those and maybe even more but those successions will be a will make a huge difference and then there's also an organization called cancercare.org who has oncology social workers who will also help with counseling and yeah so there's resources out there where you're not having to dole out more co-pays 

Sal: or at least right sorry even 

Jill: support groups right oh support groups are huge 

Sal: huge I feel like the support groups that I've been part of helped me even more than a therapist because at the end of the day like I love my therapist but he has no idea what I've been through like he does but he doesn't actually understand but at a support center you guys can totally relate to each other and just not feeling alone honestly it's a little thing but it goes a long way. 

Jill: Goes a very long way that shared experience is a huge makes a huge difference and I mean I'm not living in those shoes but I facilitate a support group and I see I hear I feel from the expressions on the on people's faces and the set of their shoulders what's happening in that shared experience and it's amazing it really is it's so worth people often say after they join I don't understand why it took so long to join or I'm sorry I did it makes a big difference 

Sal: yeah and just know you can help people that way is is amazing and I know that you asked you know have I reached out to help others since being diagnosed I documented everything online you know that's just how I am I'm just such an overshare and I'm so glad I did because so many people reached out to me and they're like okay I'm going through this experience that experience blah blah blah I never thought I was gonna hear from someone I have heart cancer too because oh my gosh it seems so rare yeah so I was like oh so like we're good this is it I nobody have to deal with this again but it's good to like just let people know what's going on right so and she's from the UK she's a scientist she was a chemist like me I was a chemist and she experienced kind of the same symptoms I did and it turns out she had an angiosarcoma of the heart these poor women were so healthy like one of them was completely vegan the other one had been in sports her entire life she could run she could run so for me it was like why did I survive and these women didn't and that's such a hard question and I of course every single survivor has that question right because it was like they did everything right what why why did my body survive this thing and theirs didn't even though they were healthier right it sounds really scary we could be walking around with cancer right now we don't even know we don't even know that was really hard because the second girl she really fought so hard and she was revolutionary she like won an award in the UK for biotech she was like killing it she had her own biotech company and she was astounding and she was going to change the world with you know biotech medicine and it's just like we got robbed of such a beautiful human being because her doctors also didn't believe her and again thank god I had my videos because you know she showed them the evidence because I logged my evidence I showed the fluid that they drained which by the way was 700 milliliters of fluid oh my gosh that's huge yeah almost a leader wow and I documented everything I'm grateful I did document everything I'm grateful I'm still helping people get diagnosed and that's something I love to do but it's so hard it's so hard because honestly it sounds bleak we have no idea who is going to make it and who's not 

Jill: there are no guarantees but no guarantees the thing you can the things you can do are engage with your health care team engage with yourself practice self-awareness um live life yeah and spend time with who you want to spend time with and just and fight fight for yourself fight for yourself wow that's like so intense 

Sal: go get a second opinion go get a 20th opinion if you need to and one of your questions was you know if my oncology and my team is how they handle me asking for a second opinion they're all for it 

Jill: yeah so one of the things you and I talked about and is you have to get scanned every three months and yeah that's to watch for recurrence and that's part of taking care of yourself but it has the specter of recurrence hanging over your head with this three month reminder so can you talk a little bit about that cell 

Sal: yeah 100% so for me and it's so annoying and I'm sure a lot of people can relate to this it's so annoying where people are like oh my god but why are you thinking that way you might never get it again listen that's that's just not our reality right we did get it right we got it once why can't we get it again so for me it's not even like oh i'm thinking pessimistic i'm just very realistic i really like to know if something's wrong with me and get it fixed i'm actually not scared of getting diagnosed i'm scared of not getting diagnosed 

Jill: right you're actually doing best practice yeah you know it's not that you're being pessimistic it's that you want to catch it early if it comes back absolutely it's not being a dubby downer it's taking good care of yourself 

Sal: so i think what's really important to manage anxiety around recurrence is reframing your mindset instead of being like i'm scared to get diagnosed you can say i'm scared to get undiagnosed i'm scared to not get diagnosed or misdiagnosed right um and then another thing is i try my best not to worry about something until i get bad news um that's something that has been so helpful to me even outside of cancer because i think it's so easy for us to think of a situation and be like oh my god what if it doesn't work out or what if i choke or what if i blink out or what if i fail listen you're gonna let whatever happen happen i'm a very big believer in the universe you know even if you don't believe in god you can believe in the universe because at the end of the day every action has a reaction um so for me it was more of just like okay why are we gonna stress ourselves out give ourselves anxiety and put our body in a very unhealthy environment 

Jill: you faced your mortality in a very large way and now you're like hey i'm here i'm gonna do the best i can to take care of myself and i'm gonna enjoy life i'm gonna be engaged i'm gonna love cows and yep and you're you're you completely like you said reframed your mindset around that 

Sal: right that's a huge part of it and now honestly i never think about death in in such a weird way i feel like cancer freed me for all of the things that was holding me back from life even that partner that i had at that time yeah he's a great guy but he was not for me of course it was life ending for me too after treatment 

Jill: after treatment is really hard and we did talk about you know surviving cancer is so much harder than going through cancer in my opinion because there's no guidebook on how to pick up your life after this there's no guidebook on how to process these emotions or honestly growing up you know when i was 20 it sounds so silly but having this scar was like the worst thing that could have happened to me i felt like frankenstein i mean i would look in the mirror and i would just hysterically sob and i'd be like oh my god i have all these scars i have all these marks like i look like a monster how am i ever gonna have sex with someone that was like my first thought i was like there's no way i'm ever gonna be able to get intimate with someone after this because i just felt so monstrous and i i really wasn't used to seeing that new body in the mirror yeah which i think is something a lot of cancer patients have to deal with after you know especially with breast cancer even without scars though because you've been through the experience and you've been through treatment your body image is changed no matter even if it's outwardly not inwardly it is so i think almost everyone who has experienced cancer has experienced what 

Sal: you're saying it's just like the jewelry with like makeup like these things are part of your identity so i think a lot of us go through this weird identity loss and then after cancer they're like well who am i i have no idea like i've i've turned into this new person with a new perspective and i don't really know who she is anymore but you think you're gonna go back to normal reality is there's no more normal like you are going to have to create a whole new life and adjustment for yourself which for some people that could be really anxiety inducing i love change so i felt like i handled it very well um i ended up getting on meds because i was so depressed i couldn't even get out of bed and you know it was around the time of my breakup so honestly i don't feel like cancer is necessarily the thing that pushed me over the edge it was my relationship ending that really did it for me because it was like i lost my hair i lost medical school i lost the way i look i lost my confidence my self image who i am my identity my friends i lost a lot of friends so for me it was just like now i lost the person that i thought i was going to spend forever with like i felt so lost i didn't have anyone my parents didn't really understand um you know god bless my parents they're beautiful people but they're old so for them they're like just you should be over it by now right 

Jill: i'm like it just doesn't work that way it doesn't never gonna be over it i'm never cancer is part of who i am at this point i'm never gonna get over it there's not a single day i don't remember it there's a straight up reminder on my chest like it's not something i can escape so yes for my parents it happened six years ago for me it happened yesterday it's like you're on this two lane road with your journey where part of you feels like cancer as you said was a blessing and how it changed your outlook and your perspective of things and then the other lane is the survivorship issues and dealing with those and realizing that treatment the end of treatment isn't the end of like oh we're back to normal it's a whole different life now and a different person 

Sal: yeah completely different yeah and honestly i always tell people it took me five years to start processing cancer it really took until last year and it's because i have an insanely supportive um partner now who allowed me to stop working allowed me to finish school mm-hmm and allowed me to do absolutely nothing for a few months and that was nice because honestly i had to go through oh i had to go through college while i was going through treatment because my college paid for my treatment wow 

Jill: that's amazing that's wonderful 

Sal: i had a scholarship i was full tuition and um i paid for uh university insurance and their plan was so good i do not have medical bills from cancer to this day wow that's amazing so much but the only caveat was i had to stay in school throughout treatment or also have a lose the insurance mm i never had a break from the moment i got diagnosed the second i graduated i never stopped wow and one hand i didn't want to survive but on the other hand i did mm-hmm and it was just like you said that two lane road it was like which one am i gonna pick am i gonna be picked to be miserable in my diagnosis or am i gonna like suck it up and just try to be better because god gave me a second chance at something huh 

Jill: and i think people shift between the lanes i mean it's it's never it's never a linear trajectory it is a continuous dynamic shift and it's okay how do i get myself back into the right lane and i think you were talking about with counseling therapy support groups those help you get back into the lane that helps you enjoy life 

Sal: yeah 100 they give you yeah so many more coping mechanisms um and i think for me i really just needed time and i think that is the same for a lot of people like and you're right there are times where you're gonna shift back and forth but i think if we normalize it and just kind of make it known like hey uh you're gonna be good sometimes you are gonna absolutely try to ruin your life other times just go with it like just that's part of healing honestly like it's never pretty it's never easy it's never smooths and again it took me five years to finally get back to work um find some purpose in my life and and actually feel not happy that i got cancer but like i love who i am right now like she's so glad to hear that she's went through a and and there were times where i didn't like myself but i think that's just all of us like all of us have periods where we're gonna be great there's periods where we're gonna suck and we just kind of got to roll with it because life we can't just be like oh poor me yes my story was really traumatic and it shouldn't have happened and it's very different than other cancer stories but i don't feel like why me anymore and i did for a while in the beginning it was a 4.0 student i was just so focused on my work i didn't have any friends none you know i was so focused on my schooling and what i had to do but like maybe that wasn't healthy maybe it wasn't right for me maybe there are other things that are better for me and i think having cancer at that time in that location like everything was just 

Jill: um one of the things we talked about too and you talk about how you have great partner is dating after cancer and dealing with the changed person you are and how do you broach that conversation 

Sal: yeah i think it was really hard for me because at the time i was 20 21 i would say i was getting getting back into dating around 21 22 and i just felt like nobody could really relate to me and the only people that could relate to me were people that were just as troubled as me and that's exactly how i ended up with a drug addict right because like for me it was just like okay nobody can relate to me on any level that is close in my age and a lot of these people especially in my age group now now that i'm 26 they want to start having families they want to start having kids getting married and all these things and it's like i'm just starting my life again i just literally started getting back my job um you know my relationship i've been in for two years now he's he's awesome i could not have asked for a better partner but if i didn't find him i would probably still be single right now you know and he also had kind of a rough upbringing but he dealt with it way better than i did so i feel like having someone that went through a difficult time and wasn't using drugs to escape wasn't using other things any type of escapism and it's just working on becoming a better person helped me tremendously to get back on track so i think especially after surviving it is really important who you end up dating because that person can literally either make your recovery way easier way smoother or they can absolutely ruin your life because we are so in such a vulnerable place right a lot of us and there are people that will pray on that and there are people who are either going to be like hey i think you're a great person but you're infertile i can't do that or hey i really like you you're a great person but the likelihood you're going to get cancer again i don't think i can handle that i don't think i could be the kind of person that you want me to be and it's difficult because you're having these conversations on your first date before someone even attaches themselves to you right it's way easier to convince someone to go through cancer with you if you've been together for a few years right if you just met they're like 

Jill: oh really yeah it's so different yeah and dating's hard enough as it is let alone let alone having to put this out there so how do you broach that how do you bring that up with with i mean how did you because you've been with someone for 

Sal: two years now yeah yeah yeah i'm i you know i'm an overshare so you just put it out there yeah it's all over my social media the first thing you see when you look up my instagram is heart cancer survivor and all over my social media i try my best to show i survived cancer i survived cancer i survived cancer and i think what really helped me with my partner that i have now was the fact that we met through mutual friends yeah so he already knew about my situation right and i think you know there are going to be some people who care and there's going to be some people who don't give a shit and they're just like i see you as a human being because you know what anyone could get cancer and that's kind of how my partner is so again i like to just get it off the table asap i don't like to be coy about it because i'm just like you know what i want someone to be like i want someone to be like fuck yes no question i don't want them to be like maybe i can handle that i don't know if i can handle that no i want you to know from the second you meet me so if you do fall in love with me you already know what i'm about you already know what you're gonna have to do with probably and that was one of the first things i said to my partner you know the first night we met we actually ended up talking until like six o'clock in the morning it was very cute there's gonna be people that really respect the shit out of you for it and then there's gonna be people that are so scared of it of it and are just gonna run away let them run away my biggest thing is let them know right away so they can run right away so you don't have to deal with someone that 

Jill: is the break out of those doors yeah you don't need that we really need to take care of ourselves after survivorship so i think with dating give yourself some time to rebuild yourself image go seek out therapy i worked with a self-esteem specialist actually wow i love it i sought out someone that was specifically in self-esteem because it's something i always struggled with and i think it's something all women struggle with from a young age so i went to go seek out that kind of specialty and once i was able to rebuild my self-esteem and my self-worth that's when i was able to find a partner that was able to handle me and what my baggage and what i come with but i think i would say seek a therapist for self-esteem issues for sure before dating um and i know it's hard because honestly after treatment you just want to hug someone you just want to cuddle with someone you just want to date someone you just want to be told you're pretty but those are just band-aids bandages you know it's not really going to fix the issue and you become very dependent on them emotionally and then instead of going through cancer now you're going through a very toxic codependent relationship it's like substituting one trauma for another so i think as cancer patients we need to be very careful with who we allow in our lives um and again i would try to be straight up about it right off the bat because i think the worst thing you can do is waste any more time we've already wasted so much time being sick struggling let out your cards all out on the table right you let someone know what you're going to need from them the support you're going to need i always tell my partners from the get-go i'm not a hundred percent i cannot clean your house i cannot cook for you but cleaning actually is very taxing for me and i'm very lucky to have someone that's like okay let's split towards then let's actually work together to make it so that this is like a harmonious union wow and not like we're 

Sal: like bound by a duty to do something right and i find that finding someone you can be very very open with and transparent with is probably the number one key to success in future relationships after cancer because you need someone you can be completely honest with because you're it again you're going to need to talk to your partner so i think it's a good thing to just be upfront about 

Jill: it right right yeah i mean before they are invested in you too and then all of a sudden they're having to reevaluate that that's got to be tough for that person too so i agree with you and um actually there's a social worker from um danah farber who very much says the same thing say it up front just say it up front so that neither invests time and it's hard i mean it is very hard um having really painful sex oh my god how how has that been mitigated for you or what have you done if you don't mind me asking and if you don't want to answer that's fine 

Sal: yeah um so it's really interesting i don't know if this is like a god in the universe thing but weirdly enough when i when my ex and i broke up it just went away i 

Jill: wonder if there was like some kind of psychological thing going on there 

Sal: that's what i think so too i i mean i don't know 100 it did feel very dry and another thing that 

Jill: i'm sure it was chemo chemo origination yes please go get yourself some lubricant i mean it definitely helps oh yeah and there are a lot of different especially nowadays there's so many different things you can use um get some stimulation toys like get whatever you need to do don't be ashamed of bringing things into the bedroom in your relationship because you know the partner that i was with at the time he was very vanilla he and so was i i was a kid he was so young you know what is a vibrator i didn't even know so for me it was like i didn't really know how to combat that and i feel like if i had more resources maybe that could have i could have corrected itself but at that time i just genuinely didn't know and i was like okay you know what i'm gonna give it time maybe this is just a temporary chemo thing and it turns out maybe it was um but in the future i kind of prepared myself because i i started to get really anxious when it came to having sex because it hurts yeah exactly so every single time i would go into i'd be like i'd brace myself and i feel like that's just coming into that psychologically is already gonna make a bad experience so i prepared i got vibrators i got lube i started to read up a lot on i read a lot a lot i started to read a lot a lot on the vagina just how it functions um actually started delving into premenopause because i started getting convinced maybe it was a premenopause thing i could see why 

Sal: right and they did warn me about it and i lost my period um so i was like maybe it's that but i i don't think it was but they did give me some really good tips actually just looking up online like why do women experience this are there ways around it and then i started learning about different conditions that can actually make sex painful so that's when i recorded everything and i was like okay if this doesn't get better within like six months i'm going to record these symptoms go to the doctor and maybe the chemo gave me these conditions 

Jill: and it very well can right it very well can chemotherapy can do that radiation therapy absolutely and but like you have found there can be ways around it and practicing regular vaginal moisturizing that makes a big difference um regular stimulation penetration gentle gentle penetration yeah with lubricant that's irritant free irritant 

Sal: free yes yes and and it's totally okay to check um maybe you need a more water-based one yes um yes i feel like my partner because he was so young i don't think he understood like what going in soft meant right i don't think he understood like what was going on and i'd be like hey go slow and you feel like 

Jill: i am but even like right or even like you brought up with toys with intimate and you don't have to have vaginal penetration every single time you can still enjoy intimacy other ways or introduce pun intended introduce the the less uh wide toy intimate toy at first to kind of get things 

Sal: going smart yeah and that that's something i i think because people aren't having these conversations right is that people aren't aware of it and also too it takes two it does i can tell my partner everything in the world if they're not receptive and they're not willing to you know make changes accordingly it's just not gonna work out right and i feel like that's something a lot of us honestly go through because they do get a little insecure about it like oh am i not good enough 

Jill: right and it's like it's not them with you it has right nothing to do with you right and i think that's where choosing your partner wisely comes back yes and going into dating again like it's a little uncomfortable but have these conversations like right off the bat communication loves you they will totally or even if they dig you they're totally open to having that conversation right you're probably going to appreciate it honestly right so that communication is so important of saying it's not you it's that i my body's changed a little bit so we need to just have patience with my body and we need to play a little bit more which can be fun that's another way to spin it and you know and it's like it's not you it's truly me but we're going to make it work or we're going to work together to figure out ways around how it's not working so that we can both enjoy each other's company another thing 

Sal: birth control after survivorship yeah i'm not on birth control i refuse to take any hormonal birth control um again that's a conversation i had to have on my first date like it's just there are so many things that changed after cancer that i was like no this needs to be addressed on a first date i don't care how awkward it is and anyway if someone else can't handle my reality i don't want them to be part of my 

Jill: reality right you know because you can't change it 

Sal: you can't change it for them right exactly and like trying to it's just gonna make you miserable and right it's not going to be a good time 

Jill: that's such a good point oh my gosh trying to change it's going to make you miserable 

Sal: it's going to make you miserable because at this point it's like you're trying to fit into something that like it's just not meant for you you know he's let him go he's better for someone else right someone literally way better for you um yeah i think that's really important 

Jill: it is so i want to know i'm dying to know how did you become a fan of cows 

Sal: oh my god yes cows i i freaking love cows first of all i've always loved burgers okay that's my favorite food i'm so american um i freaking love burgers and i remember i went to columbia which is my mom's native country and my grandma she has a farm my mom was a farm girl she grew up on a farm my grandma was a farm girl and she grew up on a farm and her mom before that it's just like been in our whole family for generations and so i went there i was really excited this is a beautiful country i always tell everyone like go visit columbia like you will not come home and i was expecting to see horses because i liked horses i didn't see any freaking horses i was just so pissed like i saw horses of other farms and i was like yeah like i'm so excited i'm gonna ride horses and then i got to my grandma's farm and all i see are a bunch of cows and i'm just like where are the horses like this is so disappointing and i guess my grandma could sense i was really upset you know kids can't hide when they're upset because i was like seven at this point seven eight nine i went back a few times to visit so i did get to see the the horses the cows my cows multiple times yeah really nice um and she was like no don't worry about it like cows and horses are exactly the same like you can't even there's no difference what the hell is she saying i was like well first of all all i know is that horses have hair you can braid how am i gonna braid this cow like i was just so upset here i was thinking i was gonna like live out a little princess fantasy ride on the horse braid it comb her hair that's not what happened and so i started hanging out with the cows and like every day when you come into the farm the cows moo at you they're saying hello they know you right yeah they really like once you're there more than three times they start to say hi to you when you get on the farm and i was like this is really cute like oh here is oh and i'm like oh hey hey moolissa you know and i had all different names for them but like i couldn't tell who was who because you know granted there's so many freaking cows and you know they were all moolissa to me at this age and then another thing i thought that that was so cute that they did is um i learned how to milk you know so they wait for their friend until they get done being milked so it's like no one ever goes in being milked alone 

Jill: oh i didn't know that it's really cute and like granted i don't know if it's just my grandma's weird ass cows that do this but like they were just really um social with each other they were like so clicky and i the more i hung out with them the more i was like oh my god these are like human beings like they would literally it was always pairings 

Sal: i learned later that cows do have best friends so i didn't know this cows have best friends and they're actually just as good as reading human emotions as horses are now i understand what my grandma was trying to say because if you're upset they know they will try to cheer you up they will go to you they'll sit next to you and the way they sit is just so cute i don't know if you've ever seen a cow sit it looks like the way a dog sits except these are huge animals so it just looks hilarious so they come and sit next to you they come and sit next to you oh my gosh they'll lay their head on your lap oh they're very affectionate so i just kind of totally fell in love with them i was like i could see why right i was like they remind me so much of humans and the way we socialize oh they can sense when you're afraid they can sense when you're upset and i was just like wow like this is really cool so then ever since that trip i was just so obsessed with cows i loved them and i was like well this is great because they're tasty too um how i ended up as part of my branding is that was like you know i've never seen anyone use cows there you go ever and i don't think people understand how social they are and just like how like us they are they really do have that like herd mentality and i also think it's really cute that they chase dogs i think they think they're dogs maybe they do yeah really think they think they're big dogs because whenever they would see dogs play yeah i keep them at my desk i do keep them at my desk and the the cow obsession just never went away yeah every single time i see a cow i'm just very reminded of my grandma and her farm 

Jill: never just like walk into somebody's field to make friends with their cows oh 

Sal: yeah i always do and then oh wow i love it come up to me they're like usually the the people go for the horses i'll say yeah i go for the cow and they always think i'm like vegan or something and i'm like absolutely not 

Jill: i would totally eat one of your cows like absolutely not i love dairy i love everything about cows yeah um so yeah that's how i got into my cow branding i love it so this has been such a treat it's been so fun oh i'm so glad you were nervous and here you are you did great thank you thank you for sharing so much of yourself and so much hope for other people and um so just incredible wisdom on how to be on this journey thank 

Sal: you thank you thank you so much for giving me the space to talk about it 

Jill: oh my gosh absolutely it's been it's just been fantastic it really has been okay hello the everything cancer podcast is here to help you communicate better with your healthcare team any information presented on the everything cancer podcast is not intended to be used as medical or healthcare advice please address your healthcare concerns with your healthcare team the staff at everything cancer podcast will not be answering questions directly directly related to healthcare thank you thank you for listening and thank you for being part of the everything cancer podcast community