GOSH Podcast

Episode 9: Boundaries and Mindset in the Context of Cancer

March 21, 2021 Gynecologic Cancer Initiative
GOSH Podcast
Episode 9: Boundaries and Mindset in the Context of Cancer
Show Notes Transcript

In this two part series, we're joined by Amin Jaswal who was diagnosed in June 2019 at the age of 29 with Stage IIB glandular adenocarcinoma of the cervix. Nicole and Amin talked about the process of arriving to her diagnosis and how she talked to her family about her cancer. Amin shares her more about the important boundaries and mindset that are important to her as she navigates this journey. Make sure to follow Amin Jaswal on Instagram to follow her on her journey -  https://www.instagram.com/aminjaswal/

For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at [email protected]

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Amin  

Because when you when you're diagnosed with cancer, you feel like you don't have any control. And you just want to feel heard, and you want to feel like you have some control. So at least if everyone honors your choices and honors your wishes, that to me is like the best form of support.


Introduction

Thanks for listening to the GOSH podcast. GOSH stands for the Gynecologic Oncology Sharing Hub, an open space for real and evidence-based discussions on gynecologic cancers. We'll share the stories of gyne cancer patients and survivors and hear from researchers and clinicians who are working behind the scenes to improve the lives of people with gynecologic cancers. 

Our podcast is produced and recorded on the traditional, unceded territories of the xʷməθkʷəy̓əm (Musqueam), Sḵwx̱wú7mesh (Squamish), and səl̓ilwətaɁɬ / sel̓íl̓witulh (Tsleil-Waututh) nations. It is produced by the Gynecologic Cancer Initiative, a province wide initiative in British Columbia with the mission to accelerate transformative research and translational practice on the prevention, detection, treatment and survivorship of gynecologic cancers. Hi, I'm Nicole Keay, and I'm Stephanie Lam and you're listening to the GOSH podcast.


Nicole 

So today we have Amin Jaswal, who was 29 years old when she was diagnosed with stage two B gland glandular adenocarcinoma of the cervix in June 2019. Like many gynecologic cancers Amin’s was not detectable through a Pap test or blood work and was ultimately identified through a vaginal ultrasound followed by a b biopsy. Today, she is six months cancer free, and here to share her journey with us. Welcome to the podcast. 


Amin

Hi, thank you so much for having me. I'm so happy to see you guys. 

 

Nicole 

Great, so why don't you just get started by telling us a little bit more about your journey with cervical cancer?


Amin 

Yeah, well, um, so as you mentioned, I was diagnosed in June of last year. You know, it was a really, obviously really shocking diagnosis at 29. You don't expect, you know, anyone to tell you that you have cancer. I didn't have any friends or family that around that age that had been diagnosed. So it was really a first for me in with for anybody within my circle of people. So I think it was it was quite shocking. But it was also at that moment, I felt, you know, I was overwhelmed with the idea of having cancer, but also very relieved, because I had been in so much physical pain, and having all of these symptoms. And really, I felt like, you know, it just wasn't validated. I was going, trying to get you know,  help from physicians for months and months to try to figure out what was wrong. And then finally, when someone told me, you know, this is what's going on, I, a part of me was very relieved and hopeful because we were finally able to find a way forward. I was able to, you know, see a like small light at the end of the tunnel. I think once you've figured out what the problem is, regardless of how horrible it is, especially like being told that you have cancer, it's kind of like okay, well, at least we have somewhere to start. And I think that initially that was you know, most people are really, my my, I don't know what other people's experience has been. But for me at the initial feeling was relief. Like, okay, finally somebody is telling me I'm not crazy, that and I'm not, you know, and also validating my pain. 

Nicole 

Right. That’s really important. 

Amin 

Yeah. And that, for me was huge. And right, you know, from the moment that I was, I had a biopsy done in the gynecologist that did my biopsy, he validated my pain. And he told me, you know, this pretty sure this is this looks like cancers to me, but we're going to confirm and get back to you within a week we're expediting it. And, you know, then me and him chatted a week later. And you know, we got a confirmation and, you know, it really got the ball rolling. And the one thing I can say is like, I feel really fortunate to have grown up in BC. The way that the process is, once you're diagnosed, it's really quick and how the ball gets rolling, obviously getting MRIs, PET scans, that whole process is a waiting game like it takes, there's a lot of waiting time in between. I, that part was hard. But you know, when you're trying to figure out what kind of, at that point from when you get a biopsy, then you have to figure out what kind is it? You kind of, you have the understanding of where it is, but what kind of tumor is it? What's the grade? What's the staging? And that takes so much time and that to me was a bit of a struggle. But I was just so happy that we're going down the path of figuring out what was wrong. And as soon as I went, you know, went to BC cancer and met my oncologists, they were all so amazing and so supportive. I think, feel like from the point that I was diagnosed, I felt nothing but support from every person that I came in contact with along my journey. So I just feel really fortunate that we have like a really good system in place here in BC, in supporting people when they are diagnosed, and through that whole process. And just even with the research and treatment options, because we don't have there's, you know, the, what we have here, we don't really have in a lot of other places in the world. So I just, that was one thing I was really fortunate about, or felt really fortunate about. 

Nicole

Yeah, we are very fortunate in that sense.

Amin  

Yeah. But I guess regarding my journey, it was, yeah, I was, being diagnosed with cancer is really hard. I think the initial feelings were, obviously the fear came in, there was the relief side. But there was also the fear of just not knowing what was gonna happen, and not knowing where it was gonna go. Not knowing if the treatments would work. I found out that the cancer I had was very rare. I think we only had like over 200 diagnoses in BC of it ever. So that in itself doesn't provide like a ton of research on the type of tumor. But luckily, the team that was treating me went based off of research that they found in other parts of the world to help in really figuring out my treatment plan. And I'm fortunate that they have those capabilities and access to that information to provide me like, different chemos that they think could potentially work. And it was a really, it was a pretty straightforward plan. From when I was diagnosed that like, the options would be just radiation and chemo for the first leg of it. And then the second chemos that I was provided were more of for exper, I guess experimental, I don't know if necessarily experimental mental is the right word. But they didn't know if it would work or not. But that it was an option for me to take. And I you know, I did that chemo, those two chemos more as a way to, for myself to know that, hey, I did everything within my power. For my conscious, like, I did everything in my power to like, make sure this is gone. And if if it all works, then great. And you know, if it didn't, then hey, at least I did the best I could. It was more that. But yeah, when I think one thing I was worried about when I got diagnosed was I didn't know what I was going to be walking into when I was going to meet the oncology team. I didn't, I really thought it was gonna be like, I was going to be given two different options. And they're both going to be really bad options that I'd have to choose the best of the worst.

Nicole

Right.

Amin 

But weirdly enough, like it was like, ‘hey, this is the one road that we have on like how we want to treat you. And, you know, do you want to jump on’? 

Nicole

Right

Amin

And that for me, it was kind of good, because I was like, okay. I was worried that it was going to be you know, these are all your options. And you know, this is, you really have to choose which way you want to go. So I was actually kind of happy about that. The The, the unfortunate thing, but for also fortunate thing was that with glandular cancer, you can't do surgery on it, you can't just cut it out, because it's in your, it grows within the glands. So I think a part of me was kind of happy that I didn't have to have them cutting into me doing surgery. But also, you know, the last options you have for treatment can kind of be worse too. So I kind of, I go back and forth on that. Because now that I'm on the other side of it, if it did come back, like that option is not going to be on the table for me. So, yeah, so I think that was one thing. So the only the only treatment option that they knew that would work was radiation. So because of that I was given twenty five rounds of external beam radiation plus I did four rounds of internal radiation blasts so that was like where they put you under, it's like a surgical procedure. So that was kind of interesting. That whole process of treatment was pretty interesting. Not what I, I didn't know anything about it. So walking into treatment, like I, the whole even,  I'm not a big science person. So I was like really learning as I was going along and I asked a million questions and everyone that I was in contact with, my oncologists, were always so happy to answer all my questions. But I think the one thing I would always ask is, “is this normal?” and Dr. Lemos would tell me “none of this is normal”. Nothing about this is normal but given the circumstance, you know, we might expect this. Its kind of, it was funny and like, we always tried to keep things a little light hearted when we could. But I feel like in the beginning of my treatment was probably the hardest. Starting chemo, I had a really hard time. My body just was not taking well to the chemo. I was on Cisplatin. And I just couldn't keep any of my, the day one it took me down. Like I got treatment in the morning and by night, I was like throwing up, couldn't keep any anti nausea down, couldn't drink water, anything. And I was like fever, shaking. And I was like, ‘Oh my god, how am I going to do this for four weeks?’ I'm like, day one, I can't. I remember I was like, crying to my mom, and like, ‘Mom, I don't think I can do this’. Like how am I going to do this. But my understanding is like, I guess, as a young person, chemo, from what my doctors explained, was that chemo hits you almost even much harder than somebody who's older. Because you know, your body is quite active, your nervous system is quite active, and chemo tends to attack your nervous system. So you're really having this internal struggle. So your body is, it kind of goes into a form of shock when you're when you start down the chemo journey. So I think that's part of what was happening. And I spent two nights in the emergency, I had to go every day at night, I went there, at Royal Columbian. And then I was admitted to BC Cancer and they kept me there for about five days, just to get me on a proper regiment that would work for my body, the anti nauseas that would work for me. And once we, they got me on a good regiment, and administered my next chemo, then I was finally able to come home and like do all my treatment from home. And I was really happy about that. Just being in your own bed, I think it is the one thing that you really want, when you're going through when you’re going through something like this.

Nicole

Yes, some comfort. 

Amin

Ya, comfort. But I think it was it was interesting, because in the beginning, I just didn't feel safe at home because I felt like nobody could help me. 

Nicole

Right

Amin

Like my family felt like, like they couldn't do anything when I'm you know, basically feel like I'm purging and like, can't keep anything down. So at first I felt really safe like when about being around doctors that could give me fluid, could give me actually administer anti nausea through like IVs to kind of get my body under control. And that but I was so happy once we were able to figure out a regiment where I could be in a safe space at home and feel good being at home and handling the treatment from home. But yeah, there there's a lot of different sides of I feel like the beginning of treatment. Like I, before I got diagnosed with cancer, I never felt like, I never dealt with depression or anxiety or any of that kind of thing before but once I was diagnosed like there was all there were a lot of I felt like the depression anxiety became a part of my part of my, part of my life during that time. And like I think it was because a lot of just consistently being in like fight or flight mode when you're in treatment. And so yeah, there was a lot of a lot of different sides of myself that I started to see and I was it just you know, you're learning more about yourself. How you handle like real obstacle and what happens when you have to really start fighting for yourself. So in a weird way, I feel like it was a blessing. Having to go like learn learn that side of myself, but I don't know if I would take, I would want that pain ever again.

Nicole 

How did your family handle your diagnosis?

Amin 

Oh, wow. So it's really interesting. When I, the day I was diagnosed, the day I found out, I so I got a biopsy done and it took a week to get the the results. So I found out the gynecologist called me. And it was around maybe three or four o'clock in the day. And when I found out about that, I told my parents, you know, I took a minute actually right when I found out I cried. And you know, I sat with myself for a couple minutes. And I really thought of like how do I want to do this? How do I want to how do I want to go down this journey? And I made a couple decisions in that, those moments with myself. I decided, you know, I'm not going to go down this road from a victim mentality. Like, I want to do this, I want to do this from a positive space. But I never want to sit here and everything ‘Oh, why me?’ I don't want to go from that space. I'm like, this is gonna, this is just a piece of my story. This isn't who, this isn't going to define who I am. But this is a part of my story. And also, I decided to set some boundaries in my life, going down this journey. And one way is I come from, I come from a family of five children, I'm the youngest of five. And I really, I have an amazing family, really supportive family. But one thing I wanted to make sure was, you know, I, when people love you, they can, you know, when people love you, they can end up. I don't, actually, that's not right. I don’t know what I’m trying to say.

Nicole

That’s okay.

Amin

I think what i’m trying to say is when people love you, they, and fear is involved, like, if someone's scared for you, then they might try to steer you into doing something that you might not necessarily want to do, but what they think is best for you. And I never wanted any of that. Like I really, I decided, you know, I, I wanted everyone around me to respect my decision. Because at that point, I didn't know what my treatment options were going to be. I didn't know any of that. I didn't know what my staging was going to be. So one thing I wanted was to make sure that I had full control over my decisions of what I want, how I want to move forward, and for everyone around me to respect that because regardless, I don't know how, I didn't know how sick I would get. And I, one thing I didn't want was to ever have to fight with anybody. Because, you know, when people love you, they might try to fight for you, by telling you what they think is best for you. And I didn't, I never wanted any of that. So that was one thing I, everyone that I mean, within my family and my close friends, I just asked, you know, respect what whatever I decide, you know, I'm in the right state of mind. When I'm going through this, if, you know, whatever I, however I decide to move forward through this whole journey, I just want everyone to you know, be on board and, and to be positive. And if for any chance, you can't honor either of those things, then maybe just, you know, distance yourself from the journey, from my journey. And then you know, that's like that, those were my my two were my two big wishes going through this. And I think having myself set those boundaries was really important. And I think everyone honoring that was really important to me. Because it created us, it helped me create a safe space and helped me create like, a positive space. And I think like even, and just like everyone just being supportive in the way that I needed. Because I think for me a big thing was to feel, because when you, when you're diagnosed with cancer, you feel like you don't have any control. And you just want to feel heard, and you want to feel like you have some control. So at least if everyone honors your choices and honors your wishes, that to me is like the best form of support. So that was that, for me, was a super important thing. But when I told, that day, what was interesting was I, after I made that decision, I went and told my, my father and my mom, and I don't know, I just I was telling them was probably really hard just because I know that they're trying to be supportive. But they're so scared hearing that, because they you know initially were like, ‘no, no, no’, when they found out that I was having a biopsy, ‘nothing's wrong. It's not going to be cancer.’ I’m like ‘dad, I'm pretty sure it is because even the gynecologist told me it looks like it’. So I'm like, if it is, like it's okay. And yeah, they, they were both just really supportive. And what happened was actually a couple hours later, my sister gave birth to my nephew. So my sister was in labor at that time. So it was a really interesting moment. Like I my par, my dad, I remember, like he, cuz he just found out this news about his daughter. And then he just had a grandbaby a couple hours later. And I remember him, me and him having conversation because he, I was like, Dad, this is the time to be happy. And he was like, ‘I just can't be happy right now’. He was like, ‘I'm just so worried’. And I, and then we’d, we actually had a really good discussion about it, because and one thing I told him, I was like, you're a man of faith you, you believe in faith. And this is the time where you know you have to have faith. Whatever's going to happen is going to happen. It's like during the, and this is a time of joy. Like there's a new life coming into our lives. Let's focus on the joy. And I remember for me, it felt like it was such a full circle moment getting the worst news in your life, but also getting such beautiful news having a new life come into your world. It that kind of fueled me in a sense, because I focused on that joy, just meeting my new nephew. And, and just I, we didn't tell my sister till a couple days later because she’d just given birth. But um, I told my my other siblings and we Yeah, it was, it was a really it was a really interesting moment for me, but I think it helped me focus on just what, what matters in life. And yeah, that day was really, it was something. For sure. 

Nicole 

Sounds like a lot of emotions that day.

Amin  

Ya, it was a really overwhelming day. And it was, but at the same time it was, I was really glad it felt like a really a blessing in disguise. Well, it was a blessing having, like a new life brought into our family at that moment. It really, and that and just having a baby in the, in the family at that time where I was like going through a rough time, it just helped me focus on like something cute, and something innocent and joyful. 

Nicole

And hopeful.

Amin

And yeah, and hopeful. And that was, really meant a lot to me. So it's, which it's so weird how the universe like works like that, how life works like that. So yeah.

Nicole 

How did you find talking about gyne cancer within you know, your family or your circle of friends? Like, did you find that that was a bit of a taboo type talk topic? Were people comfortable? Were you comfortable, you know, sharing like symptoms, and what was going on?

Amin

Well I naturally like, I'm one of those people. I'm just like, Hey, I'm an open book, ask me, whatever, I don't care. But I'm like, I feel like with my family, like my dad is 77 years old. My dad's older. My parents are originally from India, they came here in the 70s. So they've been here for a long time. And but it was really interesting. Like, I never thought I would be talking so intimately about everything that's going on with my body. I didn't think I'd be telling my dad about my menstrual cycle or a bike, about clotting, or, you know, this is what's going on. And, you know, I told them everything. Because I think when you get sick, like, you know, any of those uncomfortable conversations, almost, for me anyway, from my family, they just kind of went out the window. It's more like, Hey, we want to know what's going on. We want to make sure you're okay. You know, tell us what's going on. And one thing my dad had said, when I was first diagnosed, he's like, I don't ever want you to feel like you need to hide anything from us. And I was like, Dad, I'm not going to hide anything. Don't worry. I think he was just worried that would, I think that scares you even more thinking that somebody is trying to hide something because they don't want to hurt your feelings. And I said, I told him straight up, I was like, um, you know, I'm going to be super transparent with you guys. everything that's going on, like, and I don't want you to guess. And I want you like vice versa. I want it to be that way when, because this is a scary journey. And it was just funny me trying to explain it to my mom, because I, my mom is in her 60s. Oh, like, she's 60, oh, crap, how old? 67? I think 66? 67? Around that, around that age. My memory is not that great right now. That's a whole other thing.

Nicole

Yes

Amin

 But um, yeah, my, my mom, um, my mom, my aunt, my two aunts. It was really funny because like, they're all, they span between the ages of their 60s to their 80s. And is really funny having to try to explain to them where the cancer is in my body, because they didn't really understand. They're like, what, like, where abouts like, is it going like, where in your cervix is it? And I remember just drawing them like an anatomy thing and be like, okay, so what this is where it is, and like, this is what's going on. And I was trying to explain to them about like, because I had this one issue within my, one of my fallopian tubes. So I was explaining that all to them. And yeah, it was just it was really it was kind of funny, because I felt like I was having a little anatomy class thing you know, and saying like, because at that point, that's like, you just want to, when someone in your family sick, you just want to know what's going on and understand it. And I feel like because of that the taboo stuff, just kind of it goes out the window. You don't really care about that. But I do think that within the South Asian, Asian community as a whole like we, this, I think the conversation around gynecological cancer and just around the reproductive system needs to be more open. And I think I think even just gynecological cancer in general among people needs to be more open. I know with my girlfriends, we talked about it. But there was like some areas that I found that you know, at first you might not feel like talking about like the word clotting is not a sexy word. That's not one word that people really want to talk about. But I find like the younger like girls in their younger 20s or early 20s might find it even more uncomfortable to talk about versus like going into your 30s. I felt like with my age group of friends we were more comfortable talking about more openly. But I found like I was talking to some of my nieces who were younger. And I think it was more like, oh, like, in their late teens into their early 20s, it was more like oh, woah, kind of like that comfort isn't fully there. But I think that it's a conversation that we need to normalize within communities. Because I think if you need to know what symptoms to look out for, what what might be, you know, might be a red flag, and you know, when to see your doctor and mention to your doctor. And really, I think being informed gives you the information to really be able to advocate for yourself. And if you advocate for yourself, that's when you can really it can be the difference between surviving and not surviving, and, and really, that when it comes to cancer, it's like there's a time clock on it. I know, when I was diagnosed, I was diagnosed about three to six months before I would have been terminal. So I'm, I'm really lucky that it didn't, that it didn't spread. You know, and luckily my body was, I hate that it was in so much pain, but most women aren't in aren’t, don't feel any pain. So I and the fact that I was in so much pain is what pushed me to go get help, and keep asking for help. So I think I think that's one thing within just even within the Asian community needs to be more of open discussion, because at the end of the day, knowing what's wrong, it's like, it's gonna be the difference between being able to save your own life and not. But even just, I think among women in general, it's like a conversation, I think we really need to normalize. And I don't think, you know, talking about things like, oh, discharge and clotting, like it shouldn't be a bad discussion. I think it's just, it's your body. It's okay. 

Nicole

It happens. It's what happens to all of us.

Amin

Exactly, it happens to all of us. And if it's not, if it doesn't, if it feels like it's out of the norm, hey, like, it's not it, no one's going to shame you because of that. It's like, it's something to say, Hey, I think this isn't right. And like, let's go ask for help. Because I think when when something doesn't feel right, it's almost like you think that you're doing something wrong? Or I did something wrong, or that somebody is going to be like, Oh, my God, what's going on with her? You know? So it's, it's, it's one of those things, I think that I'm hoping even just through discussions like this, and I really want to do a lot more work with helping women and advocating and also normalizing the discussion around gynecological cancer. I think it's a really important thing that is needed within, just within the community.

Nicole

Were you aware of what the symptoms were of something like cervical cancer or any of the gynecologic cancers before you were diagnosed? Like, did you have maybe sort of any inkling that maybe this might be a cancer or what did you think was happening?

Amin

I, see, that's the thing. I felt like something was wrong, I, the thing, the amount, I was having so much bleeding. And I was having such weird discharge going on. And I felt like and the pain, I felt like something like cancer or something was going on. And I was being I was being told at first oh, maybe it's just BV. Oh, a yeast infection. Oh, but but that didn't really add up with all the symptoms. Like it doesn't add up with all my symptoms. And then it was Oh, that might be endo that you just have endo. I was like well, still,  this just doesn't add up. Like I that's what I I feel like, I'm happy that I was you know, that I was able to like, tell myself No, no, no, this isn't right. Like, I need a real answer. I need something that's going to really tell me what's going on or something that's going to relieve this, the symptoms like make them go away. So the fact that, like I was able to kind of do that and fight for myself was really important. And the crazy thing was like I ended up what happened was I went to the emergency room. And I told I talked to a resident, it was a resident that was got the inkling of something that was wrong. Like the minute she did my pelvic exam. And she didn't have visual, she was like, oh, something isn't right here. And then she pulled up my vaginal ultrasound that I'd had a couple of weeks before. And then that's when she was like, Okay, I need to go send you for a biopsy, and boom, boom, boom, that's kind of where things started moving. So the fact that it took me to have to go to the emergency room for really to get the ball rolling was was kind of wild, but I was really happy that I did that. And I was really happy that, you know, it was a resident, somebody that's learning to become a doctor that saw that. And because of that extra work, and they're the ones who like, are just learning about it. So they're a thing will go that extra mile to really try to figure out what's going on. And so in that sense, I felt like I was really fortunate.

Nicole

Yeah, absolutely.

Outro

Thanks for joining us on the GOSH podcast. To learn more about the gynecologic cancer initiative and our podcast. Make sure to check out our website at gynecancerinitiative.ca