Welcome to Episode 22 of the Language Neuroscience Podcast. I'm Stephen Wilson. Today's episode is very different, but I think you'll find it really interesting. My guest today is Olivia Leow. Olivia is not a professor. She is the Executive Director of the Rotary Club of Nashville. I met Olivia in the clinic last year after she had a brain tumor discovered that was located in the left posterior temporal region. This called for pre-surgical language mapping
with functional MRI. The goal of pre-surgical language mapping is to determine the location of critical language areas with respect to the intended resection site. We wanted to confirm first that language was localized to the left hemisphere, and that being the case we wanted to determine how close critical language areas
were to the tumor. We found that like most people, Olivia was left hemisphere dominant for language, and we found that her main temporal lobe language region, Wernicke's area, if you will, was located just anterior to the tumor. We also observed the visual word form area immediately adjacent to the ventral border of the tumor, and to other language activations
abutting other parts of it. In short, the resection site was surrounded by language areas, which we believed needed to be preserved, implying a need to minimize the resection margin all around the tumor. Based on the imaging findings, Olivia's surgeon, Dr. Reid Thompson, decided to perform an awake craniotomy in which Olivia was asked to speak throughout the
surgery. While imaging findings provide a useful roadmap, there is nothing that can take the place of direct speech and language testing during the surgical procedure to ensure that speech and language functions are preserved. Dr. Thompson carefully resected the tumor from within and succeeded in entirely preserving Olivia's speech and language function, as
you're about to hear. I thought it would be fascinating to listen to Olivia tell her story and to get a very different perspective on language in the brain. We'll talk more about this in the episode, but Olivia also started a fund through Vanderbilt to raise money for other people undergoing surgery for brain cancer. If when you hear her story, you might want to support this fund. I've linked the donation page in the show notes and on the podcast website. Okay, let's get to it.
Hi, Olivia. How are you?
Hi, I'm great. How are you?
I'm good. Thanks so much for coming in today.
Yeah, thanks for having me.
Yeah, this is like kind of a new thing for me, because this is actually the first podcast episode that I've ever recorded in person.
Right? When did you start a couple of, during the pandemic?
Um, yeah, it was pandemic baby. Early 2021. I was kind of missing all of those interactions with my colleagues and that we used to have in conferences and just coming to work day by day. And so, I had this idea. I always listened to
Sure. I listen to a lot of those. (laughter) a lot of podcasts myself. So about things that are not the
Yeah, what do you listen to?
Oh, I don't know, I was listening to 'Up First' on scientific study of language in the brain. (laughter) the way here, um, I don't know um, more, I will say a little lighter subjects than neuroscience. (laughter)
Yeah, I was listening to that kind of stuff and it just kind of occurred to me that like, you know, this might be something that we could try to like, kind of have a new way of communicating with people,
Sure.
People in my field that do this kind of research.
Right.
So it's been pretty fun. But it's been all on zoom so far and this is the first. You live in Nashville, so, you know..
Helpful, I live 10 minutes away.
Yeah. You actually live really close to me. So we met last year, when you were having some medical adventures?
Yes. And adventure is a good word for last year. (laughter) A terrifying adventure.
So I thought, yeah, I thought it'd be really interesting for people that work on language in the brain to kind of hear from a different side. Hear the story of somebody who, had, you know, was impacted by that.
Sure.
So, can you tell me like this, what was the first
Sure. thing that happened that you noticed last year? Yeah, sure. So Father's Day of 2021, is June 20th, my husband had gone to play in a Father's Day golf tournament, and a friend called and said, hey, come out to Franklin, which is about 30 minutes from your house. Bring the boys let's go to the pool, in their neighborhood. And, so I went to a local grocery store in a parking garage, and came out of the parking garage and couldn't see very well, and I've
great vision. And really, it felt like how did that flash photography, how you have spots in your eyes and then as, I should have gone home, but it did not, and I kept driving to Franklin. And by the end of the drive, I couldn't see the size of the road, and I felt a little drunk, and I just kept thinking, what is going on? I've never had anything happen like this before and I get there and I tell my friend and you know, it's getting a little better by this
point. So we go to the pool, and my boys had just learned to swim last summer, and you may know that's a really stressful summer when they go out of the puddle jumper lifejacket phase and into the just jumping into the pool and barely swimming thing?
Yeah, yeah, mind are kind of about there right now too.
Right. So you know, you got to really pay attention. So I'm in the pool with them, and my hand goes numb, like very, very numb. And I have a little bit of a headache, and I think, Gosh, what is going on? And of course, all that goes away. But um, you know, we're in the pool for a couple of hours. We go back to their house, our husbands get home from playing golf and the vision happens again, the vision changes.
So would you call that like tunnel vision?
You know, it's like peripheral vision, like everything over here on the sides, or just super blurry.
Okay, so your peripheral vision was kind of gone.
Yeah, yeah, all of a sudden, and then it came back. And then like, maybe 30 minutes later, my hand went numb again. So there, at this point really, okay, something's really going on. There's a cycle. And you we all did what you're not supposed to do. We googled it. (laughter) Which in this case, I will say Google was kinder, usually it's like, you're gonna die, today! (laughter) And in this case, it said, it's a migraine and I was like, oh, okay, well, I'm having my first ever migraine. This is
what it is. And we go home, it's Father's Day. So we give Robert gifts and, you know, go to bed. I go to work the next day. And actually, I called my endocrinologist. I've had thyroid cancer in 2015. And I've been on amino Synthroid forever, and they just changed the dosage. So I call them and I say, could these symptoms be a part of the dosage change? And she says, Oh, absolutely not. Please go to the emergency room. And I was like, Oh, I'm not gonna go to the emergency room.
But okay. So I go to work. And I run the Rotary Club here. And, you know, there's 100 or 200 people in the room, at this luncheon, I'm in charge of, and all of a sudden, I start sweating. And I'm like, okay, there is something happening in my body. I tell the President, my board, I tell my coworker, I'm like, I've got I'm gonna go to urgent care.
Not going to the ER but I'd like you gotta step
I've got a migraine. I'll go to urgent it up. care. And they were so insistent that I drive to the emergency room, and I did. I left there. I just kind of kept driving. I kept passing, I passed Vanderbilt, I passed some other hospitals in town, and I thought, I'll just go to this one buy our house. So I end up at St. Thomas West and I think, maybe it's not as busy of an emergency room. You know, I valet my car. I have my laptop with me. I've dressed like for work.
Yep.
I didn't, I wasn't going to be the the first person they saw. Then anyway, I go in, and the emergency room doctor says, you know, it does sound like a migraine, but let's do an MRI and some X rays and...
That was a good decision.
Yeah, right. Very thankful for him and him taking me seriously because I did not. I always really, I felt like this was an over exaggeration and being kind of dramatic about this migraine. And so they did that. And I remember the MRI people pulling me out of the machine and saying, Oh, we forgot that we need to deal with contrast too and at the time, I was like, okay, you know, let's, let's do it. And in hindsight, I know that they saw a brain tumor, right?
They would have seen it, like, within seconds of putting you in, at the very first scan.
Right.
And then they would have been would like woah.
Right, but they were very calm. (laughter) They played it off.
They didn't let on.
Right. So then I go back and it takes a while for the doctor to come back in the room. And I was texting my husband and friends and saying, you know, they forgotten about the migraine girl, you know, I felt like such an idiot for even going and then he came back in and he has this sheet, right, this paper from the radiologist. And he reads it. And I, it was like a movie or something, I didn't hear a word he said and I looked at him, I'm sure with a very blank stare. And I said, I
need you to read that again. And he did.
So what do you, what happened? Like he started, you could sort of at some level you knew, is bad news. And then you sort of shut off or?
He walked in and said I have good news and bad news.
You don't want to hear that.
Right. And I feel like in this case, like the bad news was pretty bad.
And what was the good news? (Laughter)
The good news was that my heart was okay. (Laughter) And I, you know, I didn't think there is anything wrong with my heart.
Yeah, it's like good news, you live in a first world country and have a loving family, bad news you have brain tumor. That's not really a good news and bad news situation. (Laughter)
It felt like a really big, you know, spectrum there. So the bad news was bad. But they didn't say, they said, you know, we found something on your brain, it could be meningitis, encephalitis, it could be MS, or a brain tumor. So I don't know at this point. And I'm there by myself. And that was a really tough point, because I had to call my husband who's at home with our at that time, I think they were three and five years old boys. And tell him this terrible news over
the phone. And he has to kind of keep it together. You know, I call my parents and at this point, I haven't told them anything about the symptoms, or they had gone to the emergency room as a really cold.
This is just coming out of nowhere for them, yeah.
Right. So having to make these calls. And that's when it really hit me like, oh, boy, this is awful. And I remember saying to the doctor, well, I can come back tomorrow, and we can talk about this. And he said, no, you've got it. We're admitting you. What happened, he said, What happened to you may have been a seizure, that vision changes and the numbness and all that, and you can't drive, and you have to stay. And that's really when I mean, things were going south really quickly at this point.
You were still alone at that point?
Yeah, yeah, for a while, and I called a friend because my husband was with the boys. We don't have any family members in town. So he calls his parents, they're about two hours away, they jumped in the car and come with him and I'd called a friend who came and met me in the emergency room. And I stayed in the hospital for six days, doing all kinds of testing lumbar punctures, which I don't recommend.
Right. (Laughter)
At one point, I had a brain biopsy. You know, MRIs and CT scans and the works, full body scans, the whole thing, and got to go home after the biopsy. And then let's see, that was a Saturday on Wednesday, the neurosurgeon I was working with at that hospital called and said, It is a brain tumor. It's a low- grade glioma. And at that point, they don't know if it's a, hope I can get these words right, for this particular audience. (Laughter) Please forgive me. It's either the
oligodenro something. Do you know the end of that word? I don't know. Or an astrocytoma. And these are just brand new words for me at the time, right? I don't know anything about it and you're terrified to Google. And he says, we were in the, you'll appreciate this, the swim's lessons parking lot when we're getting this information, because we had taken our boys for swim lessons. And he calls during swim lessons. So my husband, I walk outside and get, you know, terrible news again and
Because you were still hoping that it might be something less serious?
Right.
But they told you then, that it was, they thought it was low grade right?
Right.
At that point and I think later, they found out for sure that it's low grade.
Right.
I don't think they know for sure at that point.
They don't. Right.
But they think it's probably low grade.
So it's not, it's not the worst news. Right?
I mean, it's actually.
It could be worse.
Yeah, I mean, just to kind of fill it in for our listeners, like, I mean, it's, it could have been worse in the sense if it was high-grade, that's, a lot worse than if it's low-grade.
Right.
And that's kind of like a high grade tumor is one that's, you know, growing rapidly and it has a very high chance of recurrence.
Right.
Whereas low grade one is growing more slowly and has much less chance of recurrence.
Sure.
But then, you probably don't have all of that context at the moment you're being told that you've got a brain tumor.
Sure. I didn't know any of this and you know, I and he, another thing he told us on that phone call in this parking lot is, you need, because of where it's located in your brain, which is the Wernicke's area...
Wernicke's area.
Yeah, thank you. There's gonna be a lot of that. (Laughter)
It's all good.
That's fine. You're gonna need an awake craniotomy.
He already thought that, huh? This St Thomas surgeon?
Yeah, he said that on that phone call and he suggested that I go to University of San Francisco to do it.
University of California San Francisco.
Right, right, right, right.
Yep.
And so that's what we knew at that point and at the same time, I'm getting...
So did he tell you why you needed an awake craniotomy?
Yes, because of where the tumor was located in my brain, and because it's around and you know this because you mapped it, (Laughter) all of the communication functions, this is how I understood it, all of my communications functions were kind of wrapped around the tumor. And there's also my ocular nerve was right in there somewhere and it was just a tricky spot. And to preserve my ability to speak, and my communications abilities, the safest way to do it was an awake
craniotomy. Does that make sense to you?
That makes perfect sense. And did he tell you where it was located in the brain, like in terms of location, or
I could point to it. That's not helpful for your podcast.
That's OK, You can point and I'll fill in.
It's right here, like right above my left ear.
Yeah. So Olivia is pointing to her left posterior temporal lobe.
That's it. That sounds right.
Yep. Right. So that's what we know at this point and at the same time, actually, when I was in the hospital at St. Thomas, I was getting, people, the word was kind of getting out in my community about what was happening. And I got a few people texted or called and said, you really should go see Dr. Reed Thompson at Vanderbilt. And, you know, this is all really new to us and we don't know, how. Do you just call the Vanderbilt hotline or something? I don't know how you get into
this. But luckily, before I worked at Rotary, I worked at the Nashville Chamber of Commerce, and the CEO there found out and he called and said, What can I do? And, you know, we thought about it for a little bit, I thought, well, he probably knows a lot of people at Vanderbilt. Yeah, he probably does.
And so he called Dr. Wright Pinson, who, if you're not from here is, I don't know, president or CEO or something of Vanderbilt Medical Center. And he called Dr. Thompson, who was on vacation, and we were able to get in quickly. And you know, that was that. So, so I met Dr. Thompson on a Wednesday and he orders a functional MRI, which is how I met you. And so it was going to be on a Saturday, I don't know if you remember coming in on a
Saturday for that. But one quick story there, and we are just full of anxiety and fear and stress and, you know, this is a pretty rough few weeks,
Yeah, of course.
Of learning a lot of things and getting acclimated into this world of neurosurgery and brain tumors that we have not, I mean, we were at zero. I was, I didn't know much about it at all.
Yeah. You wouldn't.
Maybe I've watched Grey's Anatomy a few times or something, but so our plan was to come and see you and have this functional MRI and my understanding is, it's going to map the brain and I'm gonna let you explain. (Laughter)
I kind of want you to explain it. (Laughter)
What I understand is going to happen, is that you are going to map my communication functions in my brain. When I'm, what I thought would happen is talking or reading or whatever, and you were going to map the blood flow around the tumor to see how much of the tumor they could extract. Is that right?
Yes.
Oh, it's so weird to explain what someone does, it was somebody that's really good at it to them. And you're like, well, that's my best guess.
Yeah, but we talked about it.
Yeah, that's what I, I'll go into, I always, a very interesting day for me. But before that, so Friday, that was Wednesday, he ordered it Friday, I get a call from you know, there are people in the MRI department here that say your insurance hasn't approved this yet.
Oh, it's always such a hassle with insurance for these.
Oh, man, I could, if you have an insurance podcast, I'd love to spend a few hours talking about that. But so they call and say your insurance hasn't approved it yet. You're going to need to sign something that says you will pay for this out of pocket.
Oh, you wouldn't want to do that.
Right. (Laughter) And I said how much? How much will a functional MRI run you? And of course they don't know.
It's definitely like, at least five grand.
Right. And we had no idea, like is it $20,000.
Yeah it probably is. Oh no. You don't want to do that.
Who knows. So, I say we'll just postpone it. And this is Friday at five o'clock or something. And we were actually in our pediatricians office talking about how to tell our children what was happening. So we were in the middle of that and the MRI places calling and a postpone our caseload, I guess effectively and It's Dr. Thompson, the neurosurgeon calls immediately after that, and he is really fired up. I don't um, you may know him?
Yup.
He's got a lot of energy and he says, Olivia, did you cancel that MRI? And I said, I did. I sure did. Say, you know, I told him the story about the insurance situation. He said, I've been on the phone with your insurance company for an hour and a half. And I've gone round and round with him. They've hung up on me. I've gotten a peer to peer review, and they've approved it. He
said, will you go? And I said, yeah, I'll go, I just don't want to pay, you know, a million dollars or whatever, who knows what it could cost. So anyway, I end up here on a Saturday with you.
Yeah, I don't remember whether or not I knew about that or not. Like, I always check on the day off to see if the person's like bailed because like, you know, people do have reasons for canceling.
Sure.
So I usually just check before I like, come in just to see if it's like, still actually happening. So I might not have known.
There's about a 10 minute period where it dropped off and came back on.
Yeah, I vaguely remember. I think I might have been in the loop on it. I don't remember.
Yeah, that. Whatever, I could go on for hours about insurance and that whole, I'd love to have the time and energy to burn that industry down and build it up for actual people in mind. But so anyway, we come I come here, I come through the maze to find your office, which is wild. That's like step one of if your brain works, if you can find this office. And it's a really long MRI. I remember it being like two hours.
Yeah, yeah, you were in there for a while. Because they do like, we did not just functional but then they do like a pretty comprehensive structural scan as well.
Yeah, yeah, it was a long visit.
Do you remember the things we did in the scanner?
I describe it to people as like a video game. I remember, so you're in this MRI tube, I'm sure that's what you call it. (Laughter) And there's a mirror and you can see this screen behind you and I remember going through different sets of a task or games or whatever you call it, where one was like, did these two lines of words and numbers match? Is that right?
Yep.
Okay, you're gonna have to verify information. It seems like there was one where you were you would complete a sentence for me?
Yup.
Remind me, I don't know. Do you remember?
That's, that's like, totally adequate. Right?
Yeah.
So if our listeners are interested in reading more about the tasks we do, I, we actually have a publication on it and I'll link it with a podcast. So people can follow up.
So it felt like pretty sci-fi to me, because you I was just thinking the answer.
Yeah, you didn't have to do anything apart from pressing buttons.
Right.
You didn't talk at all.
Right, which is, it was it was pretty wild. That was a pretty wild day and a long day. It's exhausted at the end. But so at the end of that you send those results back to Dr. Thompson and he has this map of all of these different communications functions and where and how they touch this tumor.
So yeah, exactly. We make we kind of show where the language areas are in relation to the tumor.
Right.
I have it here.
Oh, wow, Okay.
You've seen it before. Right?
It was pretty close. Like they were all kind of right around. Yeah?
Yeah. I mean, so yeah, you had four, there were four distinct language activations that were immediately adjacent to the tumor.
Sure. So, yeah, I think that I don't know if Dr. Thompson or somebody else told me this, but if this, if this tumor were in any other part of the brain, you could go in and cut it out and cut more of your brain out and it's not a big deal. But because of where it was, and because it's so close to these important parts of my brain. That's, that's really what called for an awake craniotomy.
Yeah. So, so you, so he brought you back in to talk about what the findings of the functional MRI, right?
Right and he confirmed, he said,
Did you show it to you?
Yeah. Yeah. It, Yeah. It's like, it was a, it felt very daunting because it confirmed that, you know, we did need, I did need an awake craniotomy and this is why, I also went and saw a neuro-ophthalmologist because of the vision changes that I had, and I think the ocular nerve was right around in there too. He confirmed I had great vision by the way, even though I had not been to the eye doctor since I think the Lions Club came to kindergarten.
I don't know if you get credit for that. I mean, it's not like dentistry where you like, have to brush your teeth. If you have good vision, you have good vision. I had really, really great vision until about a few years ago and then it just started, like rapidly declining.
I know this is fleeting, I know.
Yeah.
I know. I'm hanging on to it.
I was always like, so proud that I could see farther than everybody else. Now I've just like, now I've got like four different pairs of glasses for different
That's right. I know that coming into my life situations. (Laughter) soon. I know. I know.
Yeah. So
That's funny, I do brag about it and you're right. There's no bragging, right?
Okay, so it wasn't like an ophthalmology issue, your visual fields were actually intact.
Yeah.
Yep. And did Dr. Thompson tell you about risks of the surgery at that time?
Yes. And that was, you know, having an awake craniotomy felt very scary to me. I don't know if you would like that news?
No, I don't think I would.
It's pretty, um, you know, I was, the surgery itself felt really daunting and scary and you know, that was that part. But the really the, I never felt like it can fear for my life, that I wouldn't make it through the surgery or whatever. The part that I was most afraid of was waking up and not being able to communicate. And that was a real concern.
And did he tell you that was a possibility?
Yeah.
Even with what the mapping that we had done?
Sure. And, and mainly for short-term and swelling, and that sort of thing from the surgery.
Yes.
So not long-term, loss of communication skills, maybe, but some, some version of a short term, loss of speech, or understanding what you're saying? Or, you know, and because I have small children, that was terrifying. And terrifying to think, like, you're going to come out of surgery, and maybe you're not going to be able to tell nurses or your family what you need.
Yeah. It's like, actually really common.
Yeah.
But even if things are going to be fine in the long-run, that the days immediately after one of these surgeries, people do have aphasia, you know, they're unable to speak or comprehend.
And I, I really love to talk, it's my favorite. (Laughter)
And you're a professional communicator?
Right. That's all. The only way I think I've ever been paid for it is just kind of like talking and building relationships with people and so loss of that felt really scary.
So you were, but you were only really worried, at that point, you're really worried about it in my short-term sense. You thought you were confident that it was going to be ok at that point?
Yeah, I think so.
Earlier, you probably had more more fear about the consequences of this tumor.
Sure. Sure. I think once we learned that it wasn't the worst kind of tumor, right? And I do, I've heard from all the people that it, it may come back, there's a possibility of that. So you know, I've kind of put that out of my mind, but it's not an immediate, that's
not an immediate concern. But going into surgery, I had plans for, you know, talk to my husband and my mom and dad about if I wake up and I'm not able to communicate, or if my speech is really slurred or if I can't talk to you don't take me home to the boys.
Oh, that would really freak them out. Right?
Sure. And really, you know, that was my biggest concern the whole time, is like, let's make sure that they, we had talked to the pediatrician about what to say to them about the surgery and all of that, so I plan to go to a friend's house or take me to a friend's house unless they put me in some sort of rehab facility or whatever. So, we go through the surgery, you want to go...
Absolutely.
It was on August 24, last year. So, almost a year ago and we come in to Vanderbilt and I, it feels like a dream at this point, but the the anesthesiologist called me the night before and kind of gave me the rundown of how the surgery would go. And that was really, I was feeling okay about it until I heard that. And you know what you're going to feel and hear
and all this stuff. And she was right and I'm glad she called because you know, if you think you're not supposed to hear things and you do then you could freak out. But I come in, in the morning, they take me back, I'm awake going into the OR.
So in your, in the news article about this, it mentions that you were told to like have a playlist, like music? So you you're supposed to like have songs that you're gonna listen to some part of the surgery.
I did and I spent so much time thinking about what do you listen to during awake craniotomy? Is that really like The Rolling Stones moment of your life? You don't want something upbeat (Laughter) or you don't want to dance or you know, whatever. So I was thinking about kind of slower calming things that I like. So I, during the phase between getting diagnosed and having a surgery was about two months. And I would wake up early, early in the morning because I just couldn't sleep well. And we'd go
for a walk. And that's really when I once they said, you know, you can pick the music for your soundtrack.
Of your craniotomy. (Laughter)
Yeah. I spent a lot of time thinking about that. So I would go through, I'm like, Okay, this is it. And I think I'd rethink it. And not really, it was...
So what are some of the tracks that were gonna be, you know, the backdrop to your craniotomy?
Yeah. I thought about, like John Prine? He's a local guy.
Yeah.
But he also passed away in this hospital.
He died from COVID.
Yeah, he was one of the first people.
It was very sad.
Sure, it was heartbreaking and I think he was here and I thought, Well, that may not be the best idea, right?
But what John Prine song would you have
I love Long Monday or Clay Pigeons, or, you know, all of his songs are kind of, you know, they're not rock and lisinted to? roll songs. You know the slow, calm voice that he had.
Yeah, I love both those songs.
Yeah.
I will link them on the podcast.
Oh, good.
People can appreciate John Prine who we lost to COVID.
He was fantastic. I thought about I love this guy, Taj Mahal is a blues singer and you have to be very specific with his songs, because some of them are a little upbeat, and whatever. But The Lumineers have a lot of songs that are kind of that, kind of that same vibe. So, you know, I kind of thought through all this, and, you know, I want, let's do the Lumineers. And, and then I kind of freaked out. And I thought I'd really rather listen to whatever Dr. Thompson likes, right?
(Laughter) He is the star of this show, like he needs to be, he's the one that needs to be in a good mood more than me. I'm not doing a whole lot in this scenario. So he picks the Eagles, which, you know, just kind of ruined the Eagles for me now.
Are you a fan of The Big Lebowski by any chance?
Yeah, yeah.
You know where he says like, I hate the fucking Eagles. (Laughter)
That's right. So Dr.Thompson, fix the eagle.
I like the Eagles.
Yeah, good. And really, I wasn't, I could hear But they put, that you get knocked out, so, that's right. it. But not there's a lot happening. You know, and I feel like there's 20 people in this room and there's, you know, people are moving around a lot. And so we go into that, OR, I'm awake. They put me under a bit, for the opening, for the surgery. And then I'm back awake again. And pretty awake. You know, I thought it would be kind of sleepy, dreamy.
There's a period in which you're... I would say like colonoscopy under.
Okay, I haven't had one of those, yet.
Kind of people say, like you're it's like.
Okay, you're not fully out, huh?
No, it's not deep, full anesthesia.
And that's the period when they're actually cutting a piece of your skull off, right?
Right?
They are making a, making a little door in your skull.
Right. (Laughter)
And then they open that up and, you know, probably pretty big and you're okay, it's just kind of flap of skull.
Right.
They remove it and during
I'm starting to sweat over here.
I'm sorry. During, during that whole phase, you're not totally out. But you're...
No, I am out enough where I don't remember that part.
Okay.
Which is helpful. Then they wake me up. And I am pretty awake. I remember this whole phase of the surgery. And there's an anesthesiologist that is sitting like a foot from my face, probably. And he is, starts asking me questions. What's your name? You know, what year is it? Who's the president, whatever. And then he has a picture book and it's like cow and house and like really simple pictures, you know, to see if I
can name those. And my understanding of the surgery is that Dr. Thompson is putting probes into different parts of the brain. While I'm doing this to make sure that, to see if he can go further or to make sure that my communications functions are preserved.
Exactly.
So I think that's what's happening.
Yeah. So you're naming and you're naming pictures and he's probably applying electrical stimulation to the next part that's due to be removed to see whether that interferes with your ability to name those pictures. And if it doesn't, then he's going to go ahead and extend the surgery.
Sure, sure. So we do that are talking, you know, just having, they're trying to keep me having a conversation with the guy and then my favorite is they asked if I wanted to call my husband?
Woah.
You can't say no to that.
That's not in the medical record. (Laughter)
I remember asking Dr. Thompson was like, Can we FaceTime? He was like, Absolutely not. (Laughter) You know, I don't I can't see what's happening back here. And he's like, You can call him. So we call him. And they had been calling him throughout the surgery, just to say she's doing fine or whatever. And we talked for a couple of minutes and you know, like, I'll see you in a
little while. And that was that really, you know, we just kept, they just wanted me to keep talking or keep naming objects in the room or in the picture book. And then I would liken the surgery to, like a dental procedure, how it felt like, you know, if they're working on your tooth,
You can't really feel the pain but you know, you
Yeah, right. (Laughter) There's some should be getting the pain.
Oh, gosh. (Laughter)
It's like a nightmare. I can't believe that pressure, there's some like, movement or whatever. That's how it felt when they were resecting the tumor. Like I could feel you know, the surgery happening? I could hear it. I'm able to say this.
How long did it take? Would you say?
Like two and a half hours.
The whole surgery or the resection part?
The whole surgery.
Oh, wow. That's, that's pretty quick.
Right. Two, maybe three or so but pretty fast. And then they put me back under again to close it. And then I was awake again in OR. And I remember leaving, and everybody seemed like they were in such a good mood. And I thought, well, that must have gone well. Iike high-fiving, you know.
And so there were no moments in that you had any language disturbance?
I don't think so.
Okay. So they stayed clear the whole time.
Right. Right. And so I'm awake, going back to the neuro ICU, and this is during, this is August of 2021.
Oh, yeah.
And there was a big spike of the Delta variant.
Yeah Delta. I was gonna say.
Like the hospital was putting out, you know, really scary messages all the time. Like, they started, they were canceling surgeries. I think if I would have waited two more weeks, it may have been postponed.
Maybe.
And so in the neuro-ICU, there is a COVID patient on each wall of mine. I can hear them, I can see the nurses putting on all the PPE and stuff. And so that was frightening too. And leading up to it. I was I pulled my boys out of school for the week before we all quarantined.
Alright. Yeah. You don't want to have to cancel because you've got Covid.
Absolutely not. (Laughter) I was so anxious about it that postponing or canceling felt like a no go. I can't, I can't survive that.
Yeah, that makes sense.
Yeah. And so that was a really scary time. But anyway, in the neuro-ICU, a speech pathologist, and that may not be her official title, but
It probably is.
Okay. came in. And I remember her asking to name all of the words that start with A, that are not proper nouns. And maybe there's another qualifier in there too, you know in a certain timeframe, and then B and then C. And I did pretty well. But I think one of the letters that didn't do as well, and I was so mad, I was so competitive that I was like, can she come back? I've thought of all the words now. So we did
that. We did an MRI, like two o'clock in the morning, of course, and, you know, you work in a hospital. You may be more familiar with this, but hospitals are wild. At 2am, It
Yeah. The only time I've been in hospital at is just a happening place. two in the morning, was when my kids were being born.
Sure yeah, maybe you don't hang around in those hours. But you know, it's just like, it is 24/7 around here. And they wheel me over to get the MRI and the guy
Yeah. beside me on the gurney waiting on his MRI was handcuffed to his bed. I was like, this is the wildest place I've ever been. Yeah.
And, you know, I've just had this awake craniotomy and it feels like it's the weirdest day of my life, I hope and then, you know, so I stay in the hospital. until about noon the next day after the surgery, and Dr. Thompson comes down and says, you look pretty good, you seem pretty good. Do you want to go home? And because of, I mean, the COVID was rampant in there.
And what I understood was that Vanderbilt at first had all the COVID cases kind of in one area, and it really burned out the staff and nurses and you know, people taking care of them. So they had just recently moved them around to different parts of the hospital.
Right.
So we've been home in 30 hours.
Wow, that's really quick. But I guess it makes sense, right? I mean, if you have got Covid patients all around you
I was ready to get out of there, also, so I recovered more quickly from this surgery than I did my brain biopsy with general anesthesia. I felt better after.
Alright. I walked my kids into school, two days later, I went to their Tee-ball game, that was a Tuesday, I went to my little ones first Tee-ball game on Saturday. So the recovery was pretty good. And you never really had any language or other symptoms apart from not being that good at naming words starting with A. One time. (Laughter)
I noticed sometimes that words that are very common and then I've always known, sometimes it's hard to recall them. But every time I tell someone this, they say, Oh, that happens to me all the time.
Yeah.
So I don't know, if it's just, you know, a common thing. I also have noticed, I don't know the name for this kind of word, but like their, there, and they're in there, or you know, whatever those are called, I had to think harder about that now.
When you're writing homophones
Yeah, homophone. And I was very good at it. I was very judgmental before, if you got it wrong. (Laughter) I have kind of pulled back off of that.
Okay. So there's a tincy impact on your language?
I think so.
I mean, it's not surprising, right? I mean, like you had this giant tumor that was basically right there.
Right. And then I had, so I had the surgery in August, end of August. End of September, I started five and a half weeks of radiation. So when every week day, and they, you know, burn the cells and my brain.
Make sure it doesn't recur. Sure. So I did that. And then in December of 21, I started six weeks of the oral chemo Temodar, Temodar pills. So I ended that in May of 22. And now the, I'm done with treatment, the treatment phase, and I do MRIs every three months. Just to make sure that it doesn't return. Yeah?
Sure.
And how long do you think you'll be doing that for?
My understanding is I'll do scans the rest of my life. It may be it'll spread out eventually. Yeah. But I think the longest I would go is six months or a year between them.
Right? And are you comfortable with getting in the MRI these days?
Sure. I mean, it's not it's not super fun. It could be quieter. I don't understand. Maybe you can explain this to me. A Why do they have to be so loud? And B, why are the noises so annoying? (laughter) Why can't they be more consistent? Like a nice rhythm? It's just like, the worst noises you can think of?
Yeah.
And then the next phase is the they're worse than that.
Yeah. Well, you know, you'd need an MRI physicist to explain why it has to be that way.
It's horrible.
They don't give you good enough ear protection?
No. Somebody on this pod, listening to this, you could probably fix this problem. No, I don't know if it's because they're doing my brain, I just get those little...
You should bring in your own earplugs. Like find some earplugs that really work for you.
And they'll let me do that?
I would think so. I mean, I certainly would.
I did find out recently that you can't wear like leggings or workout pants because they'll catch on fire.
That's, I mean, I don't think so. I mean, sometimes they can be really cautious. I mean, it all depends, like on the research context versus the clinical context. Like in research, like we put people in the scanner that just wearing whatever they came on here. But for clinic, they get you into a gown and like they're a bit like OCD about it.
Sure. There's probably a reason for it.
But yeah, I don't know. I I'm very comfortable with MRIs. Like, you know, I've been doing MRI for 20 years, I get into scanner all the time.
Do you really?
I mean, less so these days, but like I used to, like when I was a grad student, I'd be in there like, once a week, you know, trying something out.
Yeah.
It just kind of is my happy place.
Wow. (Laughter) I would not describe it as a happy place. I don't mind it. And now they're, you know, they take 20 or 30 minutes.
Right, yeah.
Yours was
Yeah, that was long.
It was a really long one. I was really tired after that one. But no, I don't mind it. What I would rather not ever happen to get is a lumbar puncture.
Alright.
That was the worst of all the, if you, if you, know I had to line up all the tests I have had.
Worse than the awake craniotomy?
Oh, I don't know about that. But number two. (laughter)
Yeah. Okay, so you're doing well. And, you know, when you got out, you decided that you would try and do something for other people that find themselves in this situation, can you tell me more about that?
Sure. So it felt like one, we have had this enormous response from our community that have helped my family during this process, people have come out of the woodwork we've had, we have never felt so loved and supported and I'll just never get over that, right? I mean, people did the meal train thing and we didn't cook for like four or five months, I had some people that are in on the board of directors where I work, who hired a personal chef who cooked for us for two weeks after
surgery. People brought everything we needed for class projects, or whatever, the two days before surgery, a friend called and said, come outside, and I came outside, and they were probably 40 or 50 people in our front yard and they were all singing all of my favorite songs and it was like this fun, joyous party. And it just went on and
on and on. You know, people were helping us in really big ways, and really small ways and I have a friend who would Venmo me like $5, every time I had radiation to go get a coffee after.
How sweet.
Just amazing. I could, I feel like I could write a book about how to help people and it's just all the ways that we've been helped. But that that's part of it. And then if you walk into this cancer center here enough times, and I've walked in a lot of times, you start to notice that there are people that are going through something just as horrible, you don't know what people are going through there. But that may not have that community that is able to support them as ours did us.
Yeah.
So one day in particular, I walked in, and a man came and sat beside me and he had $1 General bag, and it looks like all of his belongings were in it. And he's there at the cancer center. And you think like, wow, this is, this is really stressful and this is life changing and it's expensive and it's you know, all of these things. And it's happening to people who already needed a lot of community support that they may not have been giving,
getting. So I started thinking about what we could do also wanted to celebrate kind of the one year anniversary of just getting through this horrible year, (Laughter) and doing something really silly and fun and whatever. So all of these ideas came together. And I thought we ended up with having a karaoke party. Which, you know, we're in Nashville. And what we learned was that everybody in Nashville is a really good singer. But, and
that was Vanderbilt. And I just said, how can we help people who are going through this? You know, what do they need? What can we do, and Jenny Streams is in the development department here. And she was so wonderful, and she helped me develop this brain cancer patients Assistance
Fund. And so how this fund will work is if someone comes in, and they say to, you know, their oncologist or the radiologist or not really radio radiation oncologist, or Dr. Thompson or whoever, and they indicate in some way, I'm not going to do this MRI, or I'm not going to take this Temodar or whatever it is, or they get the impression that this is a really stressful financially, they will be able to use these funds and take care of their medical bills or less than them or whatever they work
out. So it was really motivating to it because I thought of how stressful it is. Because you know, your medical bills, we have a place in our kitchen counter. And it just there was just a mountain of medical bills, one point, right? They just kept coming and kept coming. And we were kind of waiting for insurance to kick in or not. And that's part of it. Right? Like I was reading this article, I wish I could, I can
send it to you. But it was saying like how many cancer patients a big percentage of cancer patients fully drain their savings account.
Yeah.
Or their education savings accounts or they move out of their home and move in with a relative or they get a second job while they have cancer. Because it's so expensive.
And even if you are covered, I mean the copay could do that to you if you're
Oh, absolutely. I walk into an MRI and sometimes the copay is $500.
Wow!
Which we're very fortunate to be able to pay, right? But that might send someone back out the door.
Absolutely.
$500. I have a friend who, when we did the six cycles of the Temodar, chemotherapy pills, our insurance covered it, and they were there's a $30 copay per cycle. They have great insurance too. And theirs was $3,000 per cycle. Wow, that's, you know, $18,000 in less than six months.
Yeah.
It's a lot.
So you raised a lot of money through the karaoke event?
We did. Firstly, a lot of fun. Dr. Thompson came Dr. Merrell, he's on staff. He's a neuro oncologist, was there. And we had this karaoke night, right. And you could challenge other people to sing songs and all this stuff. But we raised, we're, I think, around $38,000 right now for this fund. And, you know, I hope it continues to grow and, you know, I don't think there's an end to the amount of money that's probably needed.
No, probably.(Laughter) So if our listeners want to donate to this fund, can we can we send them to a weblink?
I would love that. There's not a quick and easy web page to say, but maybe we can link it.
Yeah. I'll link it in the podcast notes. And I'll I'll read it out at the end of the episode. Yeah.
Right. Great. It is. It's, it's all run through Vanderbilt. So all of the donations go directly into this fund, and could directly be used for patients. I hope that, you know, I will continue every year to have some sort of fun party to what fund it.
What did you personally sing at the karaoke party?
So I forced my husband to sing this song Shallow with me. I don't know if you've heard it. It's Lady Gaga and Bradley Cooper. I don't I can't think of the movie name. A star is born. And it was ridiculous and fun. And probably the best I'll ever sing. I will never sing it again. I'll say that that was it. (Laughter) A divine intervention going on there. (Laughter)
Is there a recording of it?
Yes, there is. It will not be played on the podcast. (Laughter) I will say Dr. Thompson came and sang, my neurosurgeon came in saying Take it easy by the Eagles.
I like that song a lot.
Sure. You do if you have not heard it during your brain surgery.
I've sung that a lot in the car.
It's a good one.
It's a good song.
It was a great night. And yeah, I hope the fund continues to grow and to help as many people as we can. Because I think, you know, what I'd love to do in the future is just to have this big pot of money. And when someone is diagnosed with this, they can just, I just give them what they need. Right? Because what I needed, of course, we had medical bills and such, but I've hired a therapist
since then. Because it's you know, it's stressful and taxing mentally and emotionally to a trainer to help me be in the best shape I could be to get ready for that surgery. And then day to day, you know, our kids are still in daycare, and I couldn't drive for four months or five months. Yeah.
So there's just so many costs, even aside from medical costs.
Right.
Just these practicalities. Like there's just so, it's so involved.
Right.
To get a brain surgery.
Sure.
Well, I hope the people will consider donating to this fund.
Yeah, that would be amazing.
Great. So I kind of wanted to finish this by showing you this book that I have. It's like one of my favorite books. It's called speech and brain mechanisms, that's written by this guy Wilder Penfield, who basically like was the pioneer of this kind of surgery. And he's writing about like, I just want to read a little bit of it to the for the podcast, like the chapter chapter on mapping the speech area is called 'Forbidden
territory'. And it starts off like this is what he says he says 25 years ago, we were embarking on the treatment of focal epilepsy, by radical surgical excision of abnormal areas of brain. This was in the 30s. He's writing this in the 50s. In the beginning, it was our practice to refuse radical operation upon the dominant hemisphere, unless a lesion lay anteriorly in the frontal lobe or posteriorly in the occipital
lobe. Like other neurosurgeons, we feared that removal of cortex in other parts of this hemisphere would produce aphasia. The left temporal lobe and the frontocentral parietal areas were considered to be devoted to mechanisms of speech. And aphasia literature gave no clear guide as to just what might and what might not be
removed with impunity. So that's kind of how it was like, I guess, seventy years ago now, but this this guy and, you know, the surgical field that he trained, kind of learned how to operate in the language areas and be able to do stuff like, like Dr. Thompson did with with you and have you come here today and like talk with me like this.
Sure.
I just think that's really cool.
Yeah, you know, I'm super grateful for so many things during this, Dr. Thompson is one of them. But I don't take for granted my ability to communicate. Because what, if you ever feel like it's in danger, right, that you may not be able to talk, or you may not be able to understand like you did, or read or write and just having that ability. Now, every once in a while, I'm like, Oh, I'm just so grateful to be here and to be talking to you and to understand what you're saying.
So thank you, actually, for the work that you do, because you are a big part of making sure that that was successful. And that that was preserved for me, And a lot of other patients here.
Of course. You know, it's, it's fun to do, and it's good if it helps people.
Absolutely.
Thank you so much for coming in for the first ever in-person Language Neuroscience Podcast. It's been really great talking with you again.
Yeah, you too. Thank you.
Alright. Take care. That's it for episode 22. Thank you to Olivia for taking the time to talk with me and share her story. I hope you'll consider donating to the Brain Cancer Patient Assistance Fund that Olivia established. The URL is not pithy, so I'm going to link it in the show notes and on the podcast website at langneurosci.org/podcast. I've also linked papers from my lab describing our presurgical mapping protocol, as well as our papers on the incidence of aphasias after resective
surgery. I'd like to thank Marcia Petyt for transcribing this episode, and the journal Neurobiology of Language for supporting transcription. Thank you all for listening. Bye for now.