Beyond Brain Tumours

A young-adult perspective from a caregiver, on community, and living after a brain tumour diagnosis | Part 1

• Brain Tumour Foundation of Canada • Episode 13

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In this episode, we chat with power couple Esther and Elman about what it means to navigate brain tumour care and recovery as young adults. Esther reflects on her experience as a young adult caregiver, the challenges and barriers she faced, and the support that helped her along the way. Together, they reflect on their shared commitment to giving back to the brain tumour community and how they continue to build a life rooted in purpose, hope and resilience. 

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SPEAKER_01:

Welcome to Beyond Brain Tumors, a podcast of inspiration, hope, and support for the brain tumor community. I'm your host, Ben Seawald, support services specialist at Brain Tumor Foundation of Canada. In this episode, it brings me great pleasure to be joined by Power Couple Esther Jasmine and Elman Mirzeye from Ottawa, Ontario. Esther is a young professional in the sustainability funding industry and the volunteer coordinator for the 2025 Ottawa Brain Tumor Walk, who was thrust into a caregiver role when her partner, Elman, was diagnosed with a grade two astrocytoma in 2020, and then again with a recurrence in 2023. Elman is a marketing consultant who enjoys hiking and skiing and who had brain surgery at 26 years old in May of 2020, right at the start of the pandemic. Then again, three years later, when the tumor came back, this time partnered with concurrent chemo and radiation, and then 12 rounds of chemotherapy. Esther discovered Brain Tumor Foundation in Canada while researching support communities online, and they both were able to find resilience, hope, and a community that just gets it. I'm so blessed and privileged to connect with you again and chat with you both about how you overcame challenges that affected nearly every aspect of your life, including medical, psychological, social, and financial well-being. Welcome, Esther and Elman.

SPEAKER_02:

Thank you. Thanks so much for having us.

SPEAKER_00:

Thank you so much, Ben.

SPEAKER_01:

Yeah, it's great to see you again. I met Esther and Elman at the Ottawa Walk this past summer. It's a lot less hot today than it was that day.

SPEAKER_02:

Yes, it is. Yeah, very true.

SPEAKER_01:

Okay, so take me back to May of 2020. The pandemic is in full lockdown mode. The world generally seems upside down and turned around. Esther, tell me about what you noticed and what was the tipping point for Elman to get diagnosed.

SPEAKER_02:

So it wasn't so much anything I noticed or a big tipping point in the sense that there were symptoms leading up to Elman's diagnosis in early May. Elman had a seizure at home. So it was more of a big event that led Elman to being diagnosed. Of course, hindsight is 2020. I think there's things now we both look back on and wonder was that part of something bigger? Was it not? And to be honest, it really doesn't matter at this point. But yeah, Elman had a seizure at home. It was a Sunday morning. Um I was, we were living in a very small one-bedroom condo at the time. And now was in the bedroom sleeping, and I was in the living room. And uh what tipped me off was we were dog sitting, uh, my family dog, and she went into the bedroom and just stood there and stared at Elman. And that was very unusual behavior for her. Elman was making some sounds I didn't know, you know, didn't understand what was happening. And as soon as I walked into the bedroom and saw him, I knew exactly what was going on. I knew exactly that he was having a seizure, knew we need to call 911, um, which is what I did. And it being the beginning of the pandemic, and actually the pandemic itself ended up being a very, a very lucky thing. Um the medical system at that time, especially here in Ottawa, was certainly bur burdened with COVID. But because it was the beginning of the pandemic, I think it was also um fast-tracked. We're gonna have to, yes, it was also fast-tracked, exactly. So, um, and surgeons and things had a lot of extra time because there weren't as many, you know, scheduled procedures. So because of that, Ellen was actually able to get diagnosed, I think, relatively quickly, like within probably within 12 to 14 hours, within 12 hours actually, we knew it was a tumor. Within 14 hours, we knew it was a low-grade glioma. Right. Um, and within 48 hours, he was having surgery. So yeah, it was it was pretty easy in that sense, I think, to diagnose. Um, Alman had proceeded to have three seizures the first that first Sunday, uh, and then did his CT scan, his MRI, and the tumor lit right up. So we um was it was both, you know, I think, you know, listening to friends' stories of diagnosis and sort of what brought them there. I look back at the Elman's diagnosis story and feel quite good about it just because of how fast everything happened. Um yeah, obviously I think everyone had a different experience. It was quite traumatizing for Elman and I mean all of us, of course, too, but um ultimately I think it worked out, worked out for the best, and the pandemic played in our favor in that sense.

SPEAKER_01:

Yeah. Elnan, what was it like during the pandemic in the hospital? So I know I've heard other stories about families not being able to visit and that kind of thing. Um, what was that like for you?

SPEAKER_00:

Oh man. Um, well, when I was in there in 2020, um, you know, hindsight is 2020, ironically enough. Um, because the first time uh, you know, I was terrified. I was horrified. I would read the headlines about COVID spreading and hospitals being over uh burdened uh with patients. And uh I'm now like just walking right into this chaos. Everything that I was reading, um, it it really terrified me, um, genuinely. Um and uh, you know, when I'm in the hospital, uh none of my family could come visit. They couldn't even send food that you know my mom made, which I which I love to have. Um but uh you know, um there there was actually oddly enough some benefits to that. And I don't didn't realize that until my second surgery, um, because the only nice thing about um the fact that nobody can come visit you is you have a lot of time to rest. Um, whereas in the second time, 2023, everyone wanted to come visit me all the time. And I was just really tired, but like I was in a weird hosting mentality, like, yeah, come visit me. Um, so yeah, that's why I say uh hindsight is 2020. Um, so yeah, it was uh it was really scary, but um, I think if I had to do it again, God forbid, I wouldn't mind doing it in a much quieter environment than having everyone coming and visiting me.

SPEAKER_01:

Yeah, um, my experience only a few times in the hospital is that it's not the easiest place to recover with all of the kind of the noises, the beeping, the people, everything. It's uh it's a place to get treated for your acute symptoms and then to leave and go home and start to rest and recover. Um, but it sounds like the challenges of the pandemic um actually worked in your favor there.

SPEAKER_02:

I think, yeah, and speaking one, like speaking as a caregiver and sort of the healthier person, like it was very jarring to send Melman off with these paramedics. I mean, they were very kind, but these paramedics. Um, but the hardest, the hardest part truly was that communicate was communication and especially, I guess, for the diagnosis piece, like figuring out what this diagnosis is, because as an adult, obviously, the doctors will refer to the patient, and then the patient is expected to communicate. But Elman was not, um, if anyone knows, like having multiple having one seizure, let alone three seizures and then being sedated. You're very confused. Elman didn't know that he'd had a seizure, let alone three seizures. Um, just more so getting the getting clear, correct information about what was going on was I think the hardest part of it being COVID. Otherwise, like I think we both mentioned it, it was maybe easier than it normally is.

SPEAKER_01:

Pluses and minuses. Um, so kind of treatment and the brain tumor itself can cause persisting problems such as memory loss, difficulties with concentration, mental fatigue, speech issues, changes in personality or mood. Uh Esther, as the caregiver, did you notice these things in Elman looking back now?

SPEAKER_02:

You know, I do and I don't. I think Elman, Elman is always, there's certain traits of Elman's personality that have always persisted and still do. Um, Elman has always had issues with communicating. Um, he has always maybe had some word-finding struggles. And yes, I think looking back, we've both sort of said, oh, what if that was, you know, that would actually fit, right? Like timeline-wise, that would make sense if that was happening. But truly, I didn't notice anything big until I would say this past year. So since Elman has finished his chemo radiation. Um, and even this summer, I think there's been, and and while Elman was on chemo, there's been more memory questions, things like we'll get in the car and Elman will go, where are we going? And it's something we've like talked about, you know, 30 seconds before. Or he won't remember, you know, little thing like, what did you do last night? And he has no idea what I'm talking about, can't remember it. Um, and so I I would say for me, it's those types of things, but it's following the radiation in the chemo that they've really either developed or just kind of popped up. Um, but then combined with sort of how Elman is and the Elma that I know, it's been hard to split. It's only when you know professionals have come in and said, No, that's very normal. This is from your brain.

SPEAKER_01:

Right.

SPEAKER_02:

I've gone, we've maybe we've both, but more so me. I've gone, oh, that's not just like a personality trait. This is or a change because of this external circumstance. This is actually from this makes sense. This is actually a linear progression based on um, based on your treatment. So that certainly made things tricky. It's tricky, I mean, in a lot of ways, I think it's all hard for everyone, no matter what symptoms, progression, things as a caregiver you notice, you have to deal with. Um, but certainly I think for me, anyway, as a caregiver and especially a young caregiver, these types of changes are more internal, they're less, they're less physical, they're less visible. Um, and that has certainly proved to be much more challenging than I think either one of us was expecting.

SPEAKER_01:

Yeah, absolutely. And I would also say, I mean, both of you being young adults, and kind of for me speaking from somebody who's a little bit further down the road, some of these kind of memory loss issues or concentration or mental fatigue, I mean, that kind of also comes with aging as well. And so, well, yeah, quote unquote normal. Um, but I think absolutely knowing the individual and knowing kind of what their baseline was, um, I think helps a lot. Um, and really, from what I've heard in the community and specifically with other brain tumor patients, survivors, and caregivers, um, if you kind of know those baselines and know the individual uh really well, then it definitely helps kind of identifying those things moving forward. So yeah.

SPEAKER_02:

Yeah, absolutely. Certainly, I think we've spent this summer, I have at least spent this summer, this year kind of figuring out what that baseline is now. Um, to be able to now in the future go, oh, these are things you're forgetting, this isn't normal. Right. Or, oh, these are things I forget you're forgetting, you forget these all the time. It's not your easy.

SPEAKER_01:

Exactly. Yeah, yeah.

SPEAKER_02:

Yeah.

SPEAKER_00:

So um I'd just like to add the other thing that I found really helpful as someone going through, you know, brain injury recovery and improving my brain performance back to my old baselines was the uh brain injury rehab clinic, which I was admitted into uh after waiting for about a year. Um and I can't stress enough if you have the opportunity to um apply to the brain rehab program, if you're a brain tumor patient, um, how useful and how valuable it is. It really helps you with uh memory, with word finding, with processing. Um, you're really taken care of for a six-week period. Um, yeah, like, and they they have people like occupational therapists, psychologists, speech language therapists, they they you walk them through your daily work stuff. You walk them through your habits, you walk them through, oh, what are my plans for next week? And they kind of give you strategies to optimize and to make sure that you're getting uh everything done that you need to get done. And if you can't being able to set clear boundaries, um, yeah, with colleagues and and employers. Um, and so yeah, I think that's just one thing I'd like to add is the importance of brain injury rehab. Uh and that the big lesson is that uh I'll also say is that the brain is plastic. So, you know, even if I experience uh for a year some of these word finding and processing challenges, um, that it's able to improve, it's able to change uh as long as I use the tools uh that I've learned from the brain injury rehab clinic.

SPEAKER_01:

Well, that's amazing advice. And we will absolutely uh share the link in the show notes to that resource. So yeah, thank you. And again, I mean, I think that sitting here chatting with you, I'm amazed. Like I wouldn't absolutely realize that you've had such uh kind of substantial brain trauma. Um and so everything that they've done obviously has worked really well. So yeah.

SPEAKER_00:

Absolutely.

SPEAKER_01:

So cancer diagnosis and lengthy treatment can interrupt education, career building, family planning, and the pursuit of independent living. So, Elman, as a survivor, can you talk to me about some of those buckets being laid off, some travel restrictions, some family planning kind of conversations?

SPEAKER_00:

Absolutely. Yeah. Um, this is something that uh, you know, affects anyone at my age or anyone going through cancer really. Um, so the biggest challenge was for me, um, it was obviously the cancer, um, but there are a few things that contributed to that. Um, and one of them was getting laid off. Um, so uh, you know, my first brain tumor was on, I believe the surgery was actually on May the 4th. Um, and then three years later, um, I was laid off from my dream job um on May the 4th. Uh, and as they, as they say, the fourth or the force was not with us. Um, so yeah, I'd say like uh that summer um when I got laid off, brain tumors was the last thing on my mind. My main thing was accept, you know, take this time to process, um, maybe take a little bit of time off and vacation and travel, um, get into meditation, some hobbies, really just take my summer off because I had a really nice four-month severance. Um and so to, you know, as I started applying to more and more jobs, um, just slowly, more casually, as I'm kind of getting back onto my feet after the layoff, I noticed that uh it's getting harder and harder to land interviews, to get offers, to move up to different rounds. Um, at one point, I remember counting, um, I had I'd had about 40 interviews in the summer and I'd made it to the third or the fourth round about five times. I'd done um a handful of take-home assignments and still no offer. Uh, and it's all because, you know, um I was competing against ex-Google, ex-Facebook, because that was the summer of tech layoffs, right? So um anyway, so that was already just an insurmountable challenge to me. Um, but then uh I went on a um bachelor party uh to New York City with one of my best friends, Dougal, and uh yeah, like um had the time of our lives. We, you know, partied, we bonded, we had a really good time. And then um I found out that uh when I came back, I had a brain tumor. Um and so kind of just turned everything um yeah, sort of upside down. Um and I went from, you know, thinking my biggest challenge is, oh, I need a good job, I need to get a job too. Now I'm back to square one with a brain tumor starting from scratch. So um yeah, after that, um other challenges included um EI. Um, so uh the unemployment insurance that I was contributing to for years before Shopify, um I wasn't able to actually receive because what happened was is I got um sick unemployment, um, which is for sick leave. Or let's say I don't know what the actual Yeah, EI sick, like sick leave. Sick, yeah, EI sick benefits. It's not sick leave, EI sick benefits. Um, and uh yeah, that lasts six months. Um, and so I that was able to support me financially when I was in my surgery um and parts of my chemo as well as my radiation. Um, but the problem is is uh the unemployment EI, which I rightfully deserved, which was uh I think about eight months, uh 10 month period, um, I never was able to uh acquire because um the uh deadline to apply for unemployment EI was halfway through my chemo, which was in March. Um and so you can't be uh taking in unemployment EI when you're not willing and able to work. Um so I had moments there where it was like, should I just get a doctor's note and get cancel my chemo, cancel everything just so I can go back to work? I was pretty feeling I was feeling pretty desperate. Um, and you know, the the decision was I'm just gonna be honest. I'm I'm just gonna um, you know what, I'm just gonna finish my chemo. I'm gonna find a way to make to dive into savings. Maybe there's maybe some credit cards are gonna have to go up, ask for some help from my friends and my family. Um and you know, for being honest, uh, I basically didn't get any any reward for that. Um, I just, you know, had to finish my chemo. But looking back, it's like they were basically incentivizing cancer patients like me who were laid off, who don't have a good uh financial support netting. Um, yeah, they're incentivizing us to cancel our chemo just so that we can make money. And to me, that's really disturbing. Uh, and I can't even imagine how much harder it would be in countries that don't have uh, you know, um healthcare the way that we do.

SPEAKER_01:

Right. Right. Wow, what an interesting experience having to navigate all that red tape. Goodness.

SPEAKER_00:

Yes.

SPEAKER_01:

That's that's awful. And maybe we can all work together and put this on radar for people and kind figure out a way to change that process. Um, that would be a really big hope for me out of this conversation.

SPEAKER_00:

Uh I'd also like to add um another thing I'd like to be able to educate people on, um, just uh especially brain tumor patients who, you know, you've got these processing challenges, your brain literally might have a hole in it after surgery. So these are the kinds of administrative um challenges that brain injury patients struggle from the most, um the executive function, right? So it's like all left on to the caregiver to like be the only one that's like has a level-headed, you know, perspective. And and they make it so hard for the caregiver too. Like, for example, with EI, you can't email them, you can't have any um, you know, text exchange with them. It's all through phone calls. Um, and so uh one person told us one thing, one another person told us the opposite. We had to make our own conclusion based on various conversations, and in the end of the day, we didn't get the outcome that we wanted. And there was no recourse, there's no accountability for the fact that someone miscommunicated to us how EI worked.

SPEAKER_01:

Oh, how frustrating. Goodness.

SPEAKER_00:

Yeah, yeah.

SPEAKER_01:

So, yeah, I mean, out of all of that, Esther, as the caregiver, how did Elman's situation kind of impact any of you, I mean, uh all of those things, having to navigate all of that EI stuff? And I can't even imagine how difficult that would have been if you weren't married, um, and kind of how that would impact all of the the support timelines and everything else. But um kind of being in this in the in the same boat, basically. Um, how did Elman's situation interrupt all of your timelines?

SPEAKER_02:

Yeah, I think I mean it was different each time around, right? And we've had the the benefit of getting to do this twice now. Um, so the first time, I think for us, you know, we were 26, we're about to turn 27. Um, we were living together, we've been together already for eight years, maybe I don't know, long time, but um, but we weren't married, we weren't engaged. And I think for us the first time around, so in 2020, it really kind of fast-tracked us deciding to get married. Um, and solely because for me, I had so much trouble navigating the healthcare system on behalf of Elman, uh, on behalf as the person he was coming home to. Um I and I was I was very lucky. I will say I'm very lucky my mom works in the healthcare system. She works at the hospital here, one of the hospitals here in Ottawa, she has for a long time. So I got a lot of extra context. I would never have gotten otherwise. Um, but the system is structured so that if you are a long-term partner of someone, you do not have uh the privilege of having information. You do not have the privilege, certain privileges. Um, and that was very challenging. So in 2020, I would say it certainly kind of fast-tracked our decision to get married, get engaged, get married, which wasn't a bad thing. It was actually, it was great. And um, I got to have the small wedding of my dream. So that was really that was awesome. But uh, but it did, you know, it did obviously impact how we planned that, how we went ahead and decided to do that when we did it, um, all of those things. And I would say the second time around, um, you know, as Ellen's wife at this point, uh, I think if people are listening who have been, I don't know, around someone with someone who have been laid off, you already understand that when someone in your family gets laid off or your partner, you already have to change your plans, right? You already kind of have to re-org what you're doing, big expenses. Um, you know, will you move for a job? Will you not move for a job? There's all sorts of reconsiderations um that we were making. We, something Elman didn't mention was that we actually had were supposed to travel the week he ended up having brain surgery. We were supposed to be on a vacation that we uh had his neurosurgeon abruptly cancel for us when his MRI came back um, you know, badly or whatever. Uh, and so that certainly for me already, right? You know, we're going through this tough time with this layoff, having to reconsider and then throw in some health stuff and a doctor saying, no, don't travel, we're gonna do brain surgery. Um it impacts a lot. For me, I clung very hard to any sort of stability I could find in my own life. So uh I was already kind of clinging to my job. My job is quite stable and very lucky also to be in a in an industry and with an organization where my job is very valued. I'm very valued, um, they're very people focused. So I really leaned hard on that. We leaned hard on it. We leaned hard on my health benefit, my, you know, my health benefits. Um we were able to get Elman coverage through my own work, get Elman life insurance through my work, like things like that. So we were, we, you know, it's impacted and it and it's still it still impacts like the stability of my job and my ability to bring in income. Um, I think we lean on much more heavily than people who are in their early 30s do, um, because we're very aware, like Alman shared, of the fact that we could very easily end up in a situation where we have no financial support. We have no financial support from government. Um, you know, maybe we have family who can help us short term, but we do not, you know, there we could, yeah, we could end up in a place where we don't. So I think for me, in terms of timelines, it's impacted certainly my career and like my ability or my desire to maybe um take risks, take chances. Uh, it's it impacted certainly on our decisions of when to get married and things like that. And it of course has impacted as well our discussions on family planning and if we want to choose to have a family, and then how we would go about doing that, right? It's they throw you right into that um very fast. It's very jarring. Um, if you have to do chemo and radiation, it is not something you're thinking about. And as a partner, again, of someone not being the person sort of physically affected. Um but as a woman, it's very it's very jarring to be told that you may not be able to have a child naturally because of someone else. It makes perfect sense logically, but it's that's a complete that's a that's a very different emotional experience than being the person needing the treatment for your own health, your own benefit, you know, your own health issues. Um again, we are very lucky to have to live in a city where we have care. We have fertility care. Uh the Cancer Center here is very, very connected to the fertility clinic here. Um, we were able to have a lot of conversations with physicians really early on. Um, but it certainly for us, I think, has made us try have to reevaluate a little bit about when we when we are gonna have to make big decisions. Um, and then really what will we be sacrifice, what could we be sacrificing to do that? I think everyone having kids has those conversations, but for us, there's a bit more weight to it than there is, I think, um, for other young couples. So that's been really challenging.

SPEAKER_00:

Um yeah, and I just wanted to like that's that all um yeah, rings true for me too. Uh everything you shared. Um, you know, obviously we're going through this all together. And I just wanted to add that on on top of you know, being a cancer, like a cancer patient who doesn't have an income, who's relying on EI, who then also has no more EI. And then now you're finding out that um you can't conceive naturally for a child. And so now on your mind is, well, I guess I'm gonna need$15,000 for each IVF round, right? Um, and so like luckily Esther has some benefits, um, but I don't have any benefits um as a freelance consultant. Um and so, you know, we're there there are ways around it, and and we still, you know, don't have all of the information uh available to us right now that you know there might be a chance that we might not have to do um uh yeah, that type of uh treatment. Um but yeah, it's just like the idea that you know, after being unemployed for a year or underemployed, you now have to get ready to fork out like 15k a year. Um, your partner's already tapped out from supporting you. So like what are you supposed to do?

SPEAKER_02:

Like yeah, I think that's a big one, just also too, and and highlighting, I guess for us time our timelines were heavily impacted, of course, by Elmond's disease, but then also by the financial burden that cancer brings to any, you know, to ever to truly to everyone. Um and in ways you don't expect, like maybe with you know, things like fertility treatment and um yeah, areas, other other areas of your life, of people's lives, I'm sure. I'm sure too. Yeah.

SPEAKER_01:

Yeah, my goodness. I mean, all of the the kind of issues that you have to navigate, and I think people understand very clearly about the emotional toll that it all takes and some of the decisions that you have to make. But yeah, I mean, financially and the financial what's the opposite of freedom that this kind of situation forces you into, right? Um, you have to make some really difficult decisions um that potentially affect not only your life right now, but potentially your life, you know, down the line and um what your kind of situation is gonna look like long term. Um it's it's a lot to deal with. I mean, as a young adult, I think. So yeah, wow. I'm uh I'm I've got a lot of feelings for you right now.

unknown:

Yeah.

SPEAKER_01:

Yeah, thank you.

SPEAKER_00:

Yeah, it's definitely not easy. Um, and uh yeah, like it's really easy to get stuck in the weeds of it. And and it makes it hard to get out of bed in the morning, especially in some of the hardest chemo days I've had, just thinking about everything so insurmountable, having children naturally is now on top of my list of challenges of having a brain tumor possibly coming back any any year now. Um, again, I'm based I'm pretty uh traumatized, I guess, or thrown off by that layoff I had. Um, just you know, when everything seems like it's going great. So it I have we have to be really um careful, Esther and I at least to not be cynical uh and to not be negative about things like because you know, I'm I'll scroll through my feed and look at social media on LinkedIn, on Instagram, and just you know, like everyone's got their shit together and it makes you sort of like jealous and resentful and a little bit angry, like how come they got so lucky and we got dealt such a shitty card? But uh in the end of the day, it's uh it really feels like um, yeah, it's just it's just a sign that you need to have uh you need to be appreciative for what you have. And um, yeah, I'm looking for the word right now. Gratefulness is is a big theme for us. Uh, is yeah. And therapy, therapy is sick, therapy.

SPEAKER_01:

Yeah. Um well, I mean, I can honestly say that uh as someone who kind of knows you a little bit, but you know, is not one of your close personal friends, the world is so much better for having both of you in it and having you have come through this really difficult situation. Situation that life has thrown at you. And so thank you so much for your strength and perseverance and for meeting me on the other side of this journey. And um, I'm just I'm so I am also grateful for knowing you both and for seeing kind of that strength that you put out into the world. So yeah, it's incredible.

SPEAKER_00:

Thank you.

SPEAKER_02:

Well, thank you. It's very kind.

SPEAKER_00:

That means a lot.

SPEAKER_01:

Yeah.

SPEAKER_00:

Yeah. And, you know, I really think um one of my biggest life purposes after this experience is, yeah, we can talk about it later, but uh, it's just really to help uh, you know, grow and increase awareness for brain tumor, the brain tumor foundation of Canada and help others that are going through this similar situation because uh I can't imagine uh how many people are in our situation and are going through something even harder or going through something harder than that. And um, yeah, like everyone just needs to feel like they're not alone.

SPEAKER_01:

So we'll take a break there and uh ask everybody to join us for part two of our conversation, Beyond Brain Tumors, with Esther and Elman from Ottawa as we discuss their brain tumor experience, government funding for cancer patients, supporting caregivers, and finding outlets for joy, purpose, and community. All to come in part two of Esther and Elman's Beyond Brain Tumor Podcast.