Beyond Brain Tumours

Finding joy and purpose: Embracing life after change | Part 1

• Brain Tumour Foundation of Canada • Episode 15

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In Episode 15, we’re joined by Meegan, a single mother, teacher, and survivor of a non-malignant pituitary macroadenoma and stroke. This is an emotional and heartfelt conversation as she shares her journey through diagnosis, treatment, and recovery. 

Listen in as Meegan reflects on the many adjustments she’s made while embracing this new chapter of life, choosing to stay curious and engaged through learning, volunteering, and her love of reading and baseball. Her story of strength and resilience is a powerful reminder of the importance of community and support. 

For additional information, you may visit: 

GALE courses: Gale Courses 

Dale Brain Injury Services: Home 

If you’d like to share your story and take part in our Beyond Brain Tumours podcast, we invite you to fill out this short form.

Learn more about Brain Tumour Foundation of Canada at BrainTumour.ca. Follow us on Facebook, Instagram, X, YouTube and Linkedin.


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 our 15th episode, I'm really fortunate to be joined by Megan Campbell, who lives in the bustling metropolis of St. Thomas, Ontario, just south of London. Megan is a survivor of a few surgeries to remove a non-malignant pituitary macroadendoma, which was growing behind her nose and spread to her right optic nerve. She also had a stroke during her second surgery, ending up in the hospital for 77 days during the COVID-19 lockdown. A single mom, Toronto Blue Jay super fan, and previous teacher for 22 years in the Thames Valley District School Board, Megan is now a passionate about exploring her many adjustments and adaptions to the life that she had planned, supporting others who have experienced brain-related issues and physical accessibility and infrastructure. Meegan son Dallas, her Campbell's Cranium Crew friends, her parents, and her exceptionally marvelous rehabilitation counselor from Dale Brain Injury Services in London, Ontario, all help her stay on the positive side of life to find purpose and joy. I'm sure you will all be inspired, just as I have been, with Megan's approach through the hardships from her diagnosis and treatments. Thank you, Megan. Welcome.

SPEAKER_00:

Thanks, Ben.

SPEAKER_01:

I'm so grateful to be able to speak with you on the Beyond the Brain Tumors podcast and hopefully help others adjust to their kind of new post-diagnosis living.

SPEAKER_00:

I'm so happy to be here too.

SPEAKER_01:

So I want to start this podcast off with that small disclaimer that Megan might get a little bit emotional during our conversation. First, I just want to normalize feelings and tears. This topic can bring out some very raw emotion, and that's okay. Megan, do you want to share a bit of your perspective?

SPEAKER_00:

Well, I just want to say, Ben, and to all the listeners, that I can be having a perfectly great day, like the best day ever. One thing happens and I'm in tears for an hour. So there's never a way to predict when I will cry. I just know that I probably will. And that's just part of who I am now. I'm very emotional.

SPEAKER_01:

And I think that's great. I think that makes you um the terrific person that you are. So take me in your time machine and bring me back to your presenting symptoms of your initial diagnosis. Megan's got a ton of notes here, so this is gonna be fun.

SPEAKER_00:

Okay. Um in 2013, I was pregnant and started to get a lot of headaches. Every time I mentioned it to the OB or doctor, they said, Oh, that's common with pregnancy, you know, with the hormones, so it's totally fine, nothing to worry about. And a few other things happened too, and I said, Well, this is odd. And they said, Well, it's not really odd because you know you're pregnant. And I said, Okay. So then I started to get really, really terrible headaches, and they always had the same aura, and they always started behind my right ear. In fact, it was so predictable when it started, I knew I knew it would happen. I knew I would vomit, I knew I would scream to lessen the pain, and I knew I would take a Tylenol, and in an hour I would wake up from the couch and feel like nothing happened.

SPEAKER_01:

Oh my goodness.

SPEAKER_00:

Now I think those were seizures, but at the time that was never mentioned. So I just went on living a normal life then. Um, and you know, we went from doctor to doctor by February, late January, early February 2014 was when I got my diagnosis. I was at my family doctor after having two headaches in the same weekend, which was a lot. And my family doctor had been my doctor since I was born, and he said, Well, it's strange, you've never had migraines, so it's probably not that, but I'll give you this migraine um nose spray just in case that's what it is. And I said, Okay, and he said, And I'm gonna order a CT scan for you next week because I want to make sure that there's nothing going on. And his whole thing was that you don't get headaches like that starting when you're 39. So I said, Okay, no problem. I brought I walked into the hospital, like I had a million dollars and like a pink pony, like I was just giving her, I didn't think for a second they would find anything. I went by myself even. Like, I didn't no one thought there was gonna be anything. Yeah, and that day changed our lives.

unknown:

Wow.

SPEAKER_01:

Um, yeah, and it go back to my own experience. I mean, I was I had a similar thing where I was having headaches and I experienced double vision and I had new contact lenses at the time, and so the last thing that I thought was that there was a brain tumor. Um, and I also checked myself into the hospital and had the scans and didn't really tell anybody because I thought I'd be out in a couple hours. So I I hear where you're coming from, and also know about that kind of line in the sand where life changed pretty dramatically after that point. So you had let me see if I can get this transepanoidal surgery, which is through the nose and cephanoid sinus, all with a six-month-old baby. Is that right?

SPEAKER_00:

Yes.

SPEAKER_01:

So my gosh.

SPEAKER_00:

So I was diagnosed in late January, early February, and I think that was in July. So there was you see the pituitary team, do all the blood tests, do all the appointments, and then have the surgery. So, yes, it was a very different time in my life, that's for sure. Because you know, you know, at six months, babies are doing a lot of neat things, and I kind of missed a lot of them. But go ahead.

SPEAKER_01:

No, I'm I'm agreeing with you. I with my own child, I cannot imagine having to deal with that big of a health challenge, and also the parenting, single parenting a six-month-old baby.

SPEAKER_00:

Sometimes I think it's super cruel because I've heard of so many single mothers who have brain tumors, and I don't know. Obviously, we don't have any things in common that make us like that, but it's it's sometimes it seems a bit like it was unnecessary.

SPEAKER_01:

Very much unnecessary. I think that's a great way to phrase that. Um so yeah, I mean, I have the question, how did you manage that? But I also understand that probably the answer was just that you just did it because you didn't really have a choice. So can you just kind of walk me through a little bit about that?

SPEAKER_00:

Like well, my parents were always really important in my raising of Dallas, and so they of course stepped up and filled the gaps. They took me to appointments, they discussed things with me. I kept it like you did, I kept it really close to my chest. I didn't tell a lot of people, and when I did, they gave me a look like, oh wait, you have a baby. Like they did, I could see them doing the calculation in their mind of like this is not good. So I didn't tell people because I didn't want to, I don't want a sympathy look. When I did tell people again, I got that like this is not good. I'm like, Well, it's this is me, it's what I have to deal with. And I really took on this like I'm a warrior, like I am, I need to do this.

unknown:

Right.

SPEAKER_01:

Because again, I mean, I would imagine that you didn't have a choice, right? No, I didn't. So yeah. Um so after your first surgery and treatment plan, you had kind of four years in between surgeries. So can you chat with me a little bit about that time? I mean, what you filled your time with, what was your mindset during that that kind of in-between?

SPEAKER_00:

Well, those years, I went to work full-time, I parented full-time, and nothing stopped me. I had I really didn't have any restrictions on myself. I still went for yearly MRIs. I still had blood tests every couple of months, still saw my doctors all the time. Um, but I really just let myself make new friends and do new things. I transferred schools, and I didn't tell anybody that any of this was going on. It was a huge shock in 2021 when people found out I was in the hospital for brain surgery. In fact, I probably upset a few people because they were like, You what? You've you've a what? Because I'd worked with them for like, you know, seven years then and they had no idea.

unknown:

Right.

SPEAKER_00:

It wasn't meant to be tricky, it was just meant to be like, I would just rather continue this like as we're doing. Yeah. And yeah, we did everything. We traveled, we we we just lived a very normal life. Dallas and I had just gotten into a really cool swing of things after the pandemic when when I got news that I was going to have to have another surgery, and that really it sucked the wind right out of me. I thought, oh my gosh, I kind of thought, you know, after you hear that it's not growing and not growing and not growing, you think maybe it's not gonna grow, maybe we're done.

unknown:

Yeah.

SPEAKER_00:

And then my endocrinologist called me on a random weekday, a long time after my MRI. Way too long. I thought we were in the like, you know, that no news is good news thing. I thought I was in the clear, and he called me and he said, Well, your tumor's growing again, and we're not happy with the size of it, so we're recommending radiation, and I just went, What? Like, yeah, it was like someone slapped me in the face. I had no idea. Yeah. And then um, so that was in May, maybe April or May. By June, we were in the cancer clinic in London talking to a radiation that's called then. Oncologist. Oncologist, yeah. So I was in with the radiation oncologist for an appointment. By July or August, I was with the neurosurgeon who did my first surgery. And probably in August, I signed the papers to have the craniotomy. It was supposed to be done in January, but again, there was lots of things going on in hospitals. So it ended up being in March.

unknown:

Okay.

SPEAKER_01:

Yeah. And I understand that you chose not to have the radiation, but the surgery instead. Um, can you kind of lead me through a little bit about that decision process?

SPEAKER_00:

Yes, without getting too personal, um I wasn't a big fan of the radiation oncologist that I saw. Instead of helping me, the person told me about 8,000 things that could go wrong and why I shouldn't have radiation. And so when I left, my dad was with me, and when we left there, I said, Well, I'm not doing that. And so before we left, I said to the doctor, I said, Is there any way that you can contact my first neurosurgeon and ask if there's any surgery they can do? And she she looked at me and she said, Um, there's no surgery they can do. And I said, Well, I'm not giving up. And sure enough, like two weeks later, I got a call, had to set up an appointment to see my neurosurgeon. So I just the I they tried to do radiation twice. The second time I went to the cancer clinic and saw a different doctor, and they just they said, Well, you don't have to do it. And I said, Well, what are my options? And they said, Well, you know, you let it grow and you see what happens. And I did not want to do it because this was after my stroke, and they said, Well, you'll lose your memory and your hair and something else. And I was like, I have just gotten out of a stroke and craniatomy with hair.

unknown:

Right.

SPEAKER_00:

I'm already fighting with my memory, and I'm not getting not getting oh, my vision. My vision was the other one. I was like, no, I'm not doing it. I understand that a lot of people do do it, and it's it's fine.

unknown:

Yeah.

SPEAKER_00:

I just didn't feel it was the right choice for me.

SPEAKER_01:

Right, exactly. And I think that that's the the message and what I always try and communicate is that it really has to work for the patient, the individual, and to meet them where they are. And so that's the most important part about any healthcare journey or treatment plan um is that everybody needs to be comfortable and bought into the process. So sorry, just gonna back up a little bit um to just talk a little bit about that that recurrence that happened. Um, and so for so many of the brain tumor community in the population, um, that is kind of like the that's the worst case scenario. Um when you were going through that decision process on surgery or radiation, like how was it all just gut feeling, or did you do like a pros and cons list? Did you chat with your parents about it, or you just kind of knew that the path that you took was the right path for you?

SPEAKER_00:

I chatted with my parents about it because they're my main confidants, but um I just I did a lot of research online and I just felt like that was that radiation was not the way for me. And also I had had a good experience with my first neurosurgeon. So I thought I'll go back to them and this will be okay because they they did a good job the first time. Unfortunately, that doctor doesn't do craniotomies, right? So then I was with a different doctor at their recommendation, so yep, yeah, so it kind of a trusted source, right? Yep.

SPEAKER_01:

And then the stroke that happened during your second surgery landed you 77 days in the hospital during COVID by myself. Oh, that's heartbreaking. For such a phenomenal social person, I can't imagine what that must be like, right?

SPEAKER_00:

It was awful, Ben. It was I made friends with everybody. Like when I left the hospital, they wrote me a card to thank me for being in the hospital and wish me luck. I didn't write them a card, they wrote me a card. The doctors, the nurses, everybody signed a card for me.

SPEAKER_01:

Yeah. Well, I'm I'm not surprised. Just knowing you and interacting with you, you are. You're just such a positive light in my life right now. And anybody who has had the pleasure and joy to meet you, I'm I'm not surprised.

SPEAKER_00:

Oh, thank you.

SPEAKER_01:

Um, but what a what a terrible outcome. Um, and I'm sure you had days where maybe there was some kind of like, what does this all mean?

SPEAKER_00:

Well, I wonder, did I make the right decision? If I'd had radiation, would I would I not have had to deal with this all?

SPEAKER_01:

Sure, yeah, exactly. Um, so was there anything that kind of helped you get through those 77 days or tips or well the staff at the hospital were great, they were wonderful.

SPEAKER_00:

And um they really motivated me, my friends and my parents obviously also. By Mother's Day, I was able to see my son and my mother in the hospital. Oh my never they were never able to come up to my room.

SPEAKER_01:

Right.

SPEAKER_00:

They were only able to meet in like a staff cafeteria where there was nobody. It was very bleak, and I wasn't allowed to touch them or hug them.

unknown:

Oh gosh.

SPEAKER_00:

And I and some people would have, but I didn't because I was like, I don't want to risk this being the only time that we get to see each other. So after that, it kind of was wide open that my dad could bring Dallas or my mom could bring Dallas every weekend, but they were never allowed to see my room and like where I was. So they have absolutely no idea of who I worked with, what my view was, what my space looked like. To this day, they have no idea.

SPEAKER_01:

Wow. So that was you were just doing that all on your own. Wow. And I I think that m my understanding is through COVID specifically, like that was just everybody's experience. Um, and there was so much of that happening because nobody really knew what what was going on, and so to control as much as they possibly could, that was extremely common and during those days.

SPEAKER_00:

I don't blame the people for doing it. In fact, my OT was the person who said to me, Megan, what do you think is gonna really just get you out of here and get you home? And I said, Well, probably seeing my son. And she said, so she went to the director and she said, We need to have her son in this weekend. And and he was able to come. So the fact that she saw that and you know, she's a mother herself, but she turned that whole thing around for me. If I hadn't been able to see him for the whole time, I don't know what I would have done.

unknown:

Yeah, yeah.

SPEAKER_01:

Well, it's a good thing we we don't have to we don't have to worry about that, right? Because the situation changed and you were able to see your son and your parents. So yeah.

SPEAKER_00:

Well, I just wanted to let people know that along with the brain tumor, I also got the gift of Addison's disease and diabetes insipidus. Addison's disease is adrenal insufficiency, which means I'll be taking hydrocortisone for the rest of my life. It's hydrocortisone is not a fun drug to take because it's it's a corticosteroid, and it's you know, the weight gain and the fatigue and all the things that go along with that are really tough. And diabetes insipidus is like water diabetes, so it's not like diabetes mellitus. It's me, I can't drink too much fluid in a day, or else I will urinate too much and get dehydrated. So it's a constant, these are these are things that are constantly being monitored. And the um Addison's disease also has a piece where if I have an Addisonian crisis, it can be fatal. So this isn't just like a oh, I guess I I'll pile these things on too. It's like, okay, I need to have this injectable medication or go to the hospital or get an ambulance if I get any of these, if I get a fever, if I break a bone, if I get sick and I can't take my medications. So it's not just the brain tour piece, it's these other little pieces that I got that aren't exactly related to my tumor, but I got because of my tumor.

SPEAKER_01:

Right. So they were all kind of outcomes of your treatment.

SPEAKER_00:

Is that the surgery or yeah. Yeah.

SPEAKER_01:

And I'm not surprised, right? You go in there, you muck around with the brain, you change kind of where things are, um, and I'm not surprised that things like this pop up uh longer term. Um Wow, that's uh that's a that's a lot to be dealing with.

SPEAKER_00:

And another little story I had was um was how they told me I had a stroke. Now, I'll be the first one to admit that I don't have a lot of memories from the hospital, and usually people tell me that's a good thing because I don't want to remember those things. But I was in recovery from my craniotomy. My mom was not allowed in the hospital, so she had gone home, and my friends were not allowed in the hospital, so they had gone home. They left signs with the nurse though. And I was in my hospital bed and the doctor came in and said, Gee, we think you've had a stroke. We're gonna do some further tests. And I said, Okay. And then they came back and said, It looks like you've had a stroke. And I always thought, why didn't you wait till my family came in? Or why didn't you support me with someone in the hospital instead of leaving me alone in my bed? And I'm not this isn't to pick on the hospital, it's just I sometimes think there's a better way to do things, and that might have been better for me. To offer me some support, like to say, hey, we're gonna call your parents in and have a talk about some things.

SPEAKER_01:

Well, and I again I I frequently think that you know doctors are so good these days at the clinical side of things and yeah the the diagnosis side of things. Um, and then it gets gets a little bit foggy when it starts to be about uh kind of the like you said, the emotional support or kind of the feeling side of things and the bedside manner. Yeah. Bedside manner. And so I know because I've had doctors on both ends of the spectrum, and how exceptional it is when you can find a healthcare provider who has a really great bedside banner and um treats you like a human being and acknowledges your emotional journey through everything that's happening physically, um, is can be very exceptional.

SPEAKER_00:

And both of my surgeons were wonderful people. They came back and checked on me daily. After day, and they sat with me and chatted with me and understood my family situation as well. Like my first neurosurgeon, here I am, a 39-year-old woman with a six-year-old son, six-month-old son, and it was big. And he everything he said was like, I wouldn't do this if you didn't have this. If this wasn't going on in your life, we wouldn't even be sitting here. And he really understood it, I think.

unknown:

Yeah.

SPEAKER_01:

Yeah. I mean, yeah, it sounds like the level of care that you got was uh was exceptional.

SPEAKER_00:

It was, it really was. University hospital was really good, and then St. Thomas Hospital stroke the stroke unit there was wonderful. In fact, well, I did I did want to share for people who are you know hearing this and thinking that this is similar to their journey. About maybe six months ago, I had a CT scan. No, I had an MRI, sorry. And after my MRI, my endocrinologist called and said, We'd like you to have a CT scan, which I thought was odd because I thought they looked at different things and MRI, it was obviously infinitely better to have. And when I went to my follow-up endocrinologist appointment, he said, Well, your tumor is not growing, but it is liquefying. So basically, my tumor is turning into a cyst, and I have not seen a neurosurgeon yet about it. I'm just hoping for the best. And I'm telling enough people this time so that I can have people actually praying for me and and in on the loop. Right. So it's not a surprise.

SPEAKER_01:

Well, I hope you know that definitely where I'm in, uh, there's a lot of energy and prayers and good thoughts and strength being sent to you directly. So I hope you feel it and pick that up. And I encourage any anybody uh throughout Canada that you're listening to this to send send Megan a little bit of extra energy as she navigates this additional challenge in her life.

SPEAKER_00:

Yeah.

SPEAKER_01:

So the fact is, you were given this hand of cards to to deal with. Um you're an exceptional person for doing it.

SPEAKER_00:

Well, thanks you too, Ben.

SPEAKER_01:

You continue to make the most out of whatever comes your way in life, uh, and how admirable and how much respect I have for you because you're able to do that is really it's really exceptional.

SPEAKER_00:

Oh, thanks, Ben. Yeah, I mean it it just what do you do? Like my friends started calling me a warrior when I was in the hospital, and I wouldn't have called myself that before. And I thought, oh, I kind of like that because it is sort of like you're going into battle. Yeah. And you there's nowhere else to look, or no one no one really can help you on the inside. I mean, you can have therapists and you can talk to people, of course, but you have to decide that this is something you're going to do. And there's a lot of uncomfortable and really scary times.

unknown:

Yeah. Yeah.

SPEAKER_01:

And and you can't know about that until you go through them.

SPEAKER_00:

Yeah.

SPEAKER_01:

So, vegan, all of this leads me to believe that you are someone who has gone through quite a lot in your time in life, but it's not all negative and it's not all traumatic. And you have done a fantastic job um finding the joy and finding the purpose in your life. We'll get more into it in part two, but can you quickly just talk a little bit about what your mindset is as challenges come up and as you continue to do all of your physical therapy and cognitive therapy and rebuild your life a bit?

SPEAKER_00:

Sure. Well, I'm not superhuman, first of all. So I'm like everyone else. I have moments where I break down. I have moments where I just think, holy, how many more things am I gonna have happen to me? And when something goes a little bit wrong, I do get hard on myself and say, I can't take one more thing. I can't take one more thing. Like even if it's something like I can't find my glasses, I'm like, I can't take one more thing. So I don't, you know, it's not all it's not easy. But I my son is is my my reason. I told him last night when I was preparing this stuff, I said, you know, you're the reason I did all the stuff I did. And he said, What? And I said, Yeah. When I didn't want to go to bed and they wanted me to go walk around the hospital, you know, with a walker, I've said, I'm gonna get up and do that because I don't want my son to live without his mom.

SPEAKER_01:

That's amazing.

SPEAKER_00:

And he said, Really, mom? And I said, Yes.

SPEAKER_01:

Well, obviously he's a special kid. Um, and obviously he's got an incredibly special mom. So thank you for sharing that.

SPEAKER_00:

Welcome.

SPEAKER_01:

All right. Thank you so much, Megan, for joining our part one of Beyond Brain Tumors. Join us for part two as we chat with Megan Campbell from St. Thomas, Ontario, as we discuss staying on the positive side of life, finding purpose and joy. All to come in my part two conversation with Megan Campbell on the Beyond Brain Tumors podcast.