June 10, 2026 | 58 mins

In this episode, Bri takes listeners inside her recent stay in an Epilepsy Monitoring Unit, sharing real-time recordings from the weeks before, during, and after her inpatient testing, including audio captured during a seizure. Over seven days of being bedridden and monitored, she navigates sleep deprivation, unexpected emotional weight, and the profound care of her medical team. The episode closes with the results of both her six-month post-radiation MRI and the EMU findings, which surface a deeply personal secondary diagnosis that she chooses to share openly in the spirit of the community this podcast is built for.

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Disclaimer
The stories shared here are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation. Most importantly, take care of yourself as you listen and process.

Transcript
Bri (00:06)
I'm Bri Salsman, a brain tumor survivor and identity integration coach, and you're listening to Rewired Minds, a podcast that shares brain tumor stories that change us. Sometimes guests use medical terminology, so I've partnered with Northwestern Medicine Malnati Brain Tumor Institute to provide definitions of common terms. You can find the full list in the show notes. Most importantly, take care of yourself as you listen and process.

Bri (00:33)
Hey, it's Bri and I'm jumping in to let you know that today's episode is different, so I want to take a moment to prepare you. What you're about to hear is a recent part of my personal story recorded in real time across several weeks before, during, and after a stay in the epilepsy monitoring unit. Because this was recorded as it happened, rather than reflected on after the fact, it may feel heavier than other episodes. If you need to pause, step away, or come back later, do what's best for you.

I also want to let you know that I've chosen to include a portion of audio from a seizure. It's not the full thing, but it is the beginning and the end, so I want you to be prepared for that.

If you're new here and want context for how my journey started, go back to episode four where I share about my diagnosis, surgery, and recent regrowth. It'll help give context for this episode.

Lastly, I want to acknowledge that the audio quality isn't perfect. I was in an environment I couldn't control, recording in small windows whenever I could, and then doing my best to piece it all together in editing. I'm still learning and I want you to know that going in. As always, thank you for your grace and support. Let's get into it.

(musical transition)

I have gotten a few questions about what happened. This was a scheduled inpatient visit. So there was no episode, there was no event that happened that put me in the hospital. This inpatient testing has been scheduled for months.

We had to choose an order of operations. Last June, I had all these seizures, was put in the hospital, learned that my tumor returned. Because they put me on anti-seizure medication and since the medication seemed to be working, we prioritized the other things that were happening: the migraines, the insomnia, the tumor treatment, those kinds of things. Now we're getting to the point of let's address the seizures.

(musical transition)

It's 11 days before I check in and I got a call this morning from a nurse going over everything. What I was not prepared for is that the bulk of the call was her asking me to retell everything that has happened to date. That caught me off guard. I had no idea that I was going to need to do that.

Because every single time I'm in a position of needing to retell, it's not just a retelling in my mind. It is like my body leaves itself and goes back in time. I can see the space and I can hear the sounds and I can feel my body and I can feel that trapped feeling all over again that I experienced.

I don't ever want to relive this. And yet, not only are they asking me to relive it over and over and over, but I'm voluntarily doing it because this is what is needed since the first hospital that the ambulance took me to didn't do any of the appropriate protocol that they should have done.

I already was thinking about about, do I want someone to go with me? And if I do, who would it be?

I now realize that, when someone is with me, there is no room for my emotions. That is when I feel like I have to shove my own stuff down to put on a face of strength and resilience for whoever is around me. And so it is a matter of putting myself aside for the comfort of someone else.

Do I have someone for support, knowing that I'm going to shove down my own stuff for their comfort? Or do I not have someone for support, knowing that I will be able to freely experience all the emotions that come up, but then not having anyone there?

So I hung up the phone just feeling extremely numb and emotionless, emotionally and mentally drained.

These are the things that you're not prepared for. It's rarely the medical stuff that is the most difficult part. To constantly be on the edge of reliving things over and over and over again. That is the hardest part.

What we really need is someone who is going to be comfortable sitting with the discomfort and not trying to fix things, to just let things be the way that they are. Someone who is comfortable with the full range of emotions. Someone that is comfortable with the fact that one second you can be laughing and cutting up and the next second you can be bawling your eyes out and you have no idea what the thing is that's going to flip that switch.

(musical transition)

I have been thinking about how bizarre it is to be packing a bag, taking my dog to boarding, hopping on a bus to check myself into hospital. And it's such a trip because I have packed a bag and boarded my dog countless times for travel. So in a certain sense, it feels that way. You know, I'm thinking about what am going to pack? What am I gonna to do while I'm there? What do I need? What can I leave behind? Logistics of putting clean sheets on the bed so I come home to a nice welcoming bed, getting rid of food and thinking about a shopping list for when I return, and all of these things that I do when I travel. But on the other end of all of this planning, there's certainly nothing like a vacation.

It is a trip of some kind, just not the trip that I'm used to taking. More of a mindfuck than anything.

(musical transition)

I am five days out from checking in and I feel like crap because I have been stress eating. I went to the store yesterday to get some more dog food. That was the only thing on the list. And somehow I walked out with two bags of chips, a box of fresh baked seasonal lemon meringue cookies, and just a bunch of stuff that, one, was not on my list, two, not even anywhere close to the area where the dog food is.

Even as I'm walking through the store and seeing these things and adding them to my bag, in my head, I can hear the voice saying, what are you doing? You don't need this. This is a bunch of junk. You don't eat like this. But I was just consciously making a decision of, I don't care. I'm doing it anyway.

It is 24 hours later. All 10 of the delicious seasonal lemon meringue cookies are in my stomach. All of that sugar, an entire bag of chips. I haven't eaten anything else today except for these two things. I feel disgusting. And it wasn't until about an hour ago that it dawned on me you're stress eating right now. That's what's happening.

I don't eat like this. These are way outside of my eating habits. I just feel gross. I feel disappointed in myself for eating so far out of my habits. And also, I find myself telling myself that I've got to give myself grace because what is coming is a stressful thing. And sometimes managing that stress comes in the form of eating food that I wouldn't normally choose. I would like to find more useful outlets for my stress, but this is where I am today.

(musical transition)

It is the morning of admission day at the hospital. My alarm just went off so you probably can hear the grogginess in my voice.

The last few days I've felt very numb and do the things that need to be done. Prior to that, road the entire emotional roller coaster and I think I just exhausted myself to where I just had no more emotion to give to this. I shifted into get things done. Make the list of what I need to pack, read the prep materials, clean my house, purged a closet and have a pile of stuff to be donated. I spent a good amount of time on the phone talking to various people, just about life in general and catching up and generally a lot of things to distract me.

And here we are, today is the day.

I don't really feel anything right now in this moment. I'm not feeling anxious or worried or scared or excited or curious or anything really. I just am very neutral.

So we'll see if and how that changes once I get to the hospital and throughout the day.

(musical transition)

It is early in the morning on Friday morning, a little bit before 1 a.m. They came in at midnight to do my vitals and good old insomnia kicked in. I am wide awake and I thought it would be a good time to dump a little. Since it's quiet, it's the middle of the night, no one should be coming in. Hopefully no interruptions.

To rehash the week, if I can remember everything in the correct order. So I checked in on Monday and Monday was all about getting set up. I met the team, they explained how the week was going to go and the goals of my admission, which for me is diagnostic.

I won't rehash it all here, but essentially when I went to the ER last year, they misdiagnosed me and didn't do the appropriate testing for seizures. We don't have all of the information we should have had over the last almost one year. So playing catch up to get some information to guide our path forward. We're trying to answer what is going on. So then we can move on to other questions of why is it going on and then what do we do about it.

After I met the team, they placed the sensors on my head, inserted an IV, took some blood work, had me do a pregnancy, did an EKG, did more blood work, did another EKG. And one of the doctors explained to me that because my tumor is located deep in my head, sometimes the surface sensors don't pick up the seizures as well or as clearly. One of the things they like to do in that situation is insert some sensors into the head. They called them sphenoidal.

If you think about where your jaw connects up to your skull, there's a little bit of a gap. There they stick a needle in between that gap, insert the sensor, and then pull the needle back out, and the sensor stays in. So very, very similar to how IVs are inserted.

(musical transition)

They just inserted sphenoidal sensors and extremely painful. They said there's numbing cream. As soon as they told me, I was immediately like well that's not gonna do shit.

They put the needle in and then they're like, oh, it's gonna be a little bit of pressure. And I'm like, pressure my ass.

These are the terms that medical professionals use.

I know what pressure is, I'm a woman. I experience it every month. This shit ain't pressure.

I don't know how far into my head they went, but definitely felt close to an inch. Yeah, I don't know what else to say other than it fucking hurt.

(musical transition)

I just did my best to lay really really still move, not react because you're sticking a needle in my head lots of things could go wrong if I move around.

Once the sensors are placed, they all end up going together into a single cord that then goes directly into a monitor that is attached to the wall. And so while I can get up and go to the restroom with help, that's all I can do. The cord is not even long enough to get to the door of my room.

I'm grateful to have a window, so least I have some kind of outside light. But I'm not able to get over in the window and, people watch and do things that can entertain me. So I am completely bedridden the entire week. That became more clear to me on Monday once we got all set up and realized how limited I was going to be for the week.

Tuesday felt like kind of going through the motions, cause mostly we're just waiting for the meds to get out of my system. The team came right before lunch to let me know that they wanted to do some sleep deprivation. What that meant was no naps and they wanted me to try to stay up until at least one o'clock, but two o'clock would be even better.

There's a button that I push to signal to the team that seizure might be happening. That sounds an alarm on the floor and the whole team comes running into the room. I also have a camera and audio in my room. They have a live feed at the nurses station so they can always see me. If I don’t have the ability to push the button, they should still be able to catch it.

Tuesday was a lot of sitting in the bed, working and waiting. Instead of watch and wait I'm work and wait. Oh goodness I'm a little loopy. I definitely am off my medication because my head just feels like it's doing weird things. I don't know, disconnected isn't the right word. It wasn't like I was dizzy or anything. It just felt weird, which I know is really, really vague.

An interesting part of all of this is trying to find the words to describe to the team what I'm experiencing to help them understand it because some of these things I feel like there's no words to describe. So I've been trying to use a lot of analogies and metaphors to help.

So then came the real challenge because I had to somehow keep myself up until at least one, ideally two o'clock. I talked to a few people on the phone, which helped pass a little bit of time. I think around 11 o'clock or so, I buzzed someone on the team and do you have suggestions for how to keep myself awake, which is kind of funny because I have been battling insomnia through all of this since last summer and how ironic that the night that I actually need to deprive myself from sleep, I'm actually struggling to do so. But that's maybe an indication that the work I've been doing with my sleep team has been successful in a certain sense. But anyway, I digress.

I made it till maybe 1:05, 1:10, and then I just was like, I can't go any further and went to sleep.

So then Wednesday is podcast publishing day. So I woke up and finished the final steps of publishing the episode for this week. The team came in and said, they could see an increase in those epileptiform discharges. That's something that showed up on my in-home EEGs that I've done in the last few months leading up to this.

He said, that's good, we're moving in the right direction. There are more of them and they're more frequent. You’re definitely moving in the direction of potentially having a seizure, which in this case is a good situation because that's the goal. So we can capture data.

He said, if you're up for it, do sleep deprivation another night and this time let's shoot for three o'clock. That was really helpful to know earlier in the day because I had learned a lot the first night about what worked and what didn't work. So I managed my time throughout the day very differently. Things that I know will keep me awake, I intentionally did not do them during the day and held them for the evening.

The other thing that was amazing, amazing, amazing is that word got around and the team showed up. I started, throughout the day, having people drop by and bring me things.

“I heard that you're on sleep deprivation and you need things to keep you awake”

They were just so thoughtful. Someone brought me a deck of cards. Someone printed out some Sudoku puzzles from online, printed out word searches from online. Some colorful pens and just different things that did not involve screens. It's these kinds of things that make me so incredibly grateful to be at Northwestern Medicine.

A really important part of not just my story, but any of our story is the medical team that we work with and how their approach impacts our experience. I know not everyone has that and I'm very, very grateful for that.

(musical transition)

Success. It's kind of funny to say that this is a success, but I just had a seizure and they captured all of it. I'm really glad that it happened during the day and not at night I will say.

As frustrating as it is when I'm in it, I’m really, really glad that it happened because this is why I'm here. To get more information, to get answers, to figure out the plan moving forward that is for my situation, not just a generic plan. As difficult as it is, this is good.

(musical transition)

I got a call from my friend a little bit before lunch. I had the domino effect of the series of steps that happen for my seizures.

Lunch had just been delivered and so one of the team members came in to check, ‘did they get your lunch order correct.’ It just happened that he came in at the right timing and so he pressed the button on my behalf and I deteriorated from there. I did not go unconscious and I didn't have full body convulsions but my cognition slowed down, speech slowed down, it went into stuttering, and eventually went away completely. But all of my thoughts are still there, and I know what I want to say, and I'm very aware of what's going on around me. I'm trying to answer the questions that I'm being asked, but I can't get the words out of my mouth. I'm getting really frustrated, because I'm fully aware of what's going on. I'm fully aware of what I want to be doing, but I'm not able to make it happen.

They're observing and watching and having me do different assessments through all of this so that they can capture what can I do, what can I not do. First it was, what's your name? I could answer that, where are you? And as they're asking me these questions, that's when my speech starts to slow down and I start to stutter. I don't remember what the question was, but I couldn't answer it. And so I reached for my notebook to write down, ‘this is exactly what happens.’ And when I wrote that down, they switched tactics. They have laminated cards in the room and they flipped to a page and pointed to something and said, can you tell me what this is? Can you tell me what this is? It was all one word stuff. And I was able to do that. And then they flipped to a page that had like a five sentence paragraph and asked me to read it. I got to like the sixth or seventh word in the first sentence and it just was done. It was like I hit a brick wall and could not speak at all.

Then I got upset and frustrated, not with them, but with myself. One thing about me when I'm upset and frustrated, I cry. I started crying and I think they thought, oh, she's scared. But again, I can't communicate that that's not the case. I'm trying to just breathe and calm myself.

They went back to the tactic of pointing to individual items and asking me to name them. I'm taking a deep breath and I'm telling myself slow down, it's okay, take your time. That's what I'm saying internally to myself.

I think the first one that she pointed at was a chair. I said, c…h…a…i…r.... Really, really slowly like that. It took so much effort to get that word out.

And then she pointed to a feather. I said, fuck, inside my head, because I knew the F was gonna be a problem.

I was like, okay, you're probably gonna stutter. Don't get angry about it.

These are the things I'm telling myself inside my head. Just stay calm, it's gonna be fine. And sure enough, I did, I stuttered. But I did eventually get it out because I was just trying to stay calm and stay focused.

After feather, I feel like I'm coming back. And she pointed to a third image. I was able to say things still very slowly, but without a stutter. And then the speed of being able to say the word sped up. Then I was able to even start more quickly. So then she flipped back to a passage that was maybe two sentences and asked me to read that page.

It's like when your a child learning to read and you're taught to sound out syllables, which I know that's not the way they teach reading anymore, but that's the way it was for me. So I was really focusing on each syllable to get it out.

Then by like halfway through the first sentence, it was like a switch flipped and there you go. I could read clear as day and I'm back and then I could start talking again. Then of course I'm out of it.

They are asking me, do you remember everything? How much do you remember? Can you repeat back to me? Let's start from the beginning and tell me what happened and they're documenting all of this. And of course, the cameras and the audio and the EEG monitor and everything.

That all lasted in total, from the minute the button was pushed, if I was guessing maybe five minutes. It might be a little less than that.

Later on that afternoon resident and fellow and attending all came in and asked me to walk them through all of it again. I explained all of it to them and then...

What happened after that?

It's interesting right now in this moment I'm noticing my cognition slowing down and so I'm wondering if I'm about to have another seizure.

(musical transition)

My arm is a little noodly. My left arm and now my vision… I mean not my vision, my head is getting a little wonky but I'm gonna keep on talking because if I stop talking then it's going to stop and so I need I really really want to capture this if it is going to be a seizure.

And so I'm about to push my button. So the team is going to be coming in here any minute now. And I'm just going to keep on talking because I think I'm about…

Medical team member (23:59)
Hi, can you remember the color purple?

Bri (24:00)
It's purple. But one of the things I know is that if I keep talking, it keeps going. And so I want to keep talking because if I stop talking, then it will kind of go… awwwwwwaaaaaayyyyyy.

Medical team member (24:15)
Yeah, it goes away.

Bri (24:20)
So I'm trying...

Medical team member (24:22)
Can you keep talking to me?

Bri (24:23)
Yes.

(musical transition)

Medical team member (24:28)
Do you remember what color I told you?

Bri (24:30)
Purple because it was the color of those signs. And that's what I told myself when you said purple. I was like, just remember those signs.

Medical team member (24:35)
There you go.

(musical transition)

Picking up where I left off. On Wednesday, I relayed all of the information to them. The way I understood it. I'm not a medical professional but with a seizure it starts in a particular area and then spreads and activates other areas of the brains whereas migraine related stuff starts in a particular area, it spreads, it deactivates different areas of the brain. That I found that really interesting.

And so the main thing about doing this and trying to parse this out is two things. On their end, it gives them information for a treatment plan. Okay, this is associated with this, so we're gonna put it in this bucket and deal with it this way. And this is associated with this, and it goes in this other bucket that is gonna be treated in this other way, so on and so forth.

On my end, it's helpful to have those buckets because once we've identified what's connected to what, when I'm out in my everyday life and let's say my cognition starts slowing, then I can more confidently say that's likely leading to a seizure and I need to take steps A, B, and C. Or on the other hand, let's say that we find out that the narrowing vision is connected with headaches and migraines, then when I'm out in the real world and I start having vision stuff, then I know, okay, we need to treat the migraine side of things.

It gives me more guidance in my day-to-day life about how to handle things.

Still have a lot more questions at this point, but just hearing how they're thinking about things and what they're still wanting to uncover and what they still have questions around is really, really helpful to me. When I know what they're thinking about and what they still want to know, then I can be more aware of those things so that I can keep giving them more anecdotal data in addition to what the machines are reading.

The way that they are keeping that communication very much a circle and keeping that circle closed all the time is really really helpful in all of this process.

The rest of the day was a quote unquote normal day as far as hospital bedridden visits go. I finished out work day. I watched a little bit of Netflix. I listened to some of the podcasts. I did some of the Sudoku puzzles and the word searches and basically just went about trying to pass the time.

When any team member would come in, before they left I would ask, okay what's the next thing and what time does that happen?

She came in at nine o'clock to do the evening stuff and told me the next thing would be at midnight. That was nice because I was like, okay, three hours, three hours is not bad. I can do three hours. That was really, really helpful to break it down into smaller chunks of time.

Then I did end up making it till 3 a.m. in the morning and let me tell you, I watched that second hand on the clock tick tick tick tick to 3 a.m. and as soon as it hit 3 a.m. I turned those lights off and I was out pretty quickly.

But because I thrive in routine, I wake up at the same time and so even if I stay up till 3am, my body still wakes up at 6.30am so I didn't sleep very long.

That brings us to Thursday.

(musical transition)

First my epileptologist came in on Thursday morning and it was so good to see her. She is just, she's amazing. The whole team here is just wonderful. So it was really good to see her.

Back in the fall, we changed my medication slightly because of mood swings and it helped a lot. It wasn't until this week when I've got off my medication completely that I realized that even though it has improved a lot, there's still a long way to go. And so I shared with her that every day that passes, I'm getting happier and happier. I'm smiling a lot more. I'm laughing. I'm engaging with people a lot more. I just feel lighter and it just got me thinking about different interactions and I’m asking myself like why are you acting this way like where is this coming from. And the answer I'd had all along is you're under a lot of stress. There's been a lot going on this last year you're still navigating things. Give yourself some grace. Give yourself some slack.

But what I'm realizing this week actually is I think it might be more connected to my medication still.

She's like it's one thing to have fatigue or low energy things like that, but when you're talking about things that are impacting your relationships, we are going to change your medicine and we'll put you on a new prescription when we discharge you.

It was just like no questions asked. She got it.

So that was a good visit. And then a little while after she left, the EMU team came in for the update from their side of things. And of course I had the seizure the day before and they had met as a team to discuss it and kind of put the plan together for the day. They said no sleep deprivation anymore. They're not gonna do that to me for a third night, so I was like, thank you.

They said that we could do the flashing lights and the breathing, all the same stuff that I did with the at home EEG. And I was like, okay, let's do it. I asked too, I said, one of the things that I’m noticing is that, when I'm in just free flow conversation for an extended period of time and needing to grab thoughts in real time, that's usually when this happens. So I asked him, I feel like I need to be talking more to try to trigger these. Should I be making more phone calls today?

He said, well, if you would like, we can try that. It'd be really neat if you could call the same friend again.

I was like, great, done, challenge accepted.

They really wanted to get more recordings. If I was going to be discharged on Friday like we had originally planned, then they would have to start me back on medication Thursday afternoon in order to accomplish that. Well, if I'm on medication, I'm not going to have any more seizures. So we decided to extend my stay. I'm going to be here until Sunday so that we can get two more days of monitoring and I'll be discharged on Sunday.

(musical transition)

We just did the additional stuff. We did flashing lights. Lots of flashing lights. Flashing lights that were slow, flashing lights that were fast, flashing lights with my eyes open, flashing lights with my eyes closed, all the flashing lights. And it didn't trigger a full-on seizure, but I definitely was getting some of the initial sensations that happen like at the beginning of a seizure.

We also did a breathing thing that like simulates hyperventilation and that made weird stuff happen, but it was weird stuff that I'd never experienced before so that was bizarre to have something totally new and different.

So they're taking the readout back to the team so they can talk about it and review it and decide what comes next.

Even though I'm off sleep deprivation, I've been awake all day because I don't want to get out of my routine, so I am drained and I cannot wait for bedtime to arrive tonight. I have a feeling I'm gonna sleep pretty darn well. I hope so at least.

(musical transition)

Fast forward to midnight when the nurse came in to take my vitals. I tried to go back to sleep 20 minutes past. I couldn't get back to sleep. And of course, you know what happened from there because it's all captured on recording.

I wanted to do a separate recording debriefing the seizure that I had on recording.

You heard the team come into the room and it's the same deterioration. My cognition slows, my speech slows. It eventually slows enough to a stutter. And then enough to where I can't speak at all.

This time, I never got to the point where I couldn't speak at all. However, I did have full body tremors. So, both my arms, both my legs and it was still not anywhere close to the severity of what happened last June, but this is getting closer to that kind of seizure, which are the ones that I'm afraid to have because those were…

Ugh, I don't know. I'm very, very careful about using the word traumatic and I know people have very strong opinions about and telling you ‘that is trauma.’ But I just think that that is helpful from the outside looking in to tell someone that their experience is trauma, especially if you're not a licensed clinician. So I'm careful not to label it that way because I have not had conversations with the appropriate people to be able to help me label it that way.

I also recognize that I have not found a better word to describe it that doesn't have that level of intensity. For the sake of this right now in this moment, I am going to use the word trauma, although I don't personally feel at this moment in time that it was a trauma.

I can already hear people out there having opinions about that thought, and that's fine. I welcome opinions, and I love having discussion. I certainly welcome you to jump on over to the social handles and share about your own experience around the word trauma and how you use it or how you don't use it. But what I want to make sure that we steer clear of in our community is telling someone else what their experience is or is not. And I feel very strongly about that.

So, yes, it was not near on the level of what happened last June, when it was really, really bad. But we're moving in that direction from the seizure on Wednesday to now the seizure that I just had.

This is good. As much as I would like for it not to happen, at the same time, I kind of do want it to happen because that would be a wealth of information. So it's an interesting push and pull that I experience. And I've had that push and pull all week long around this.

(musical transition)

The team reviewed the recording from the seizure overnight and one of the things that they noticed is that early on in the episodes my heart rate and blood pressure increases. They don't really know what that means, just something that they're noticing and watching.

What seems to be happening is when I get in long moments of talking, there is a point in time where I'm just gonna say my brain glitches. It's also interesting because one of the things that happens when I'm like seizing is that my ability to speak goes away completely. The words are there, the thoughts are there, I know what I want to say. I'm comprehending everything around me, but I lose the ability to speak.

It's interesting that that's one of the outcomes when I speak for extended periods of time and then this episode gets triggered. So my task today is they're going to bring me prompts. I get to talk to myself all day long. I often say, I'm on a mission to collect more stories than I have time to tell them. And now I find myself needing to do nothing but tell stories all day long. It's just so interesting how life serves things up for you sometimes.

The other thing is they really want to see a seizure where I go fully unconscious. That one really scares me because that was the worst of the worst of the worst last year. I kind of suspected that they wanted to try to see that. Obviously, of course, we have no control over what does or doesn't happen and it's all for a reason and if that's what I need to do to be able to get some answers and have a clear path forward so that I can get back to my life, that would be amazing because life feels like on pause the last year. So I'd like to click that pause button and go back to play. That's the goal.

(musical transition)

One thing that I decided to do on this visit is I got a shirt. On the front, it says Northwestern Medicine Malnati Brain Tumor Institute and on the back it says, they've got my back and then in parentheses it says and my brain. I brought that and with some Sharpies and every single person that comes into the room, I consider part of my care team. That's doctors, nurses, techs, the person who takes my food order, the person who brings my food, the person who changes my garbage, who changes my sheets, who helps me go to the bathroom, literally everyone. And then I've also said I know there’s also team members in the space who are part of taking care of me, but they don't necessarily come into the room. If you could please spread the word and invite them to come in, I'd like to have them sign my shirt. It's just an invitation and I wrote up a little sign that says, you know, you're part of my story and I'm grateful for you. And I will wear this shirt with pride and recognition of your contribution to my health.

Didn't think that this was so much of a novel idea, but every single person is so excited about it. So that's been really fun and a good way to have something lighthearted and positive to talk about and a reason to engage with people beyond just the medical stuff.

My favorite reaction, I think it was on Tuesday. The guy who brought my lunch, I had invited him to do it and his jaw dropped and his eyes got so big and he skipped, literally he skipped over to the shirt and was so excited to pick his color. It's like I watched this man turn into a four-year-old on a holiday morning. That's been really fun to see how excited they are just to be recognized and acknowledged.

My hope with this shirt, first and foremost, is to recognize their contribution and express in a very outward visual ongoing way my gratitude. But also I'm hoping that it serves as a conversation starter when I wear it. Even within our community, I don't know that we always realize how many people it takes just for one hospital visit. Even for one doctor's appointment, we see our doctor and we might see a nurse practitioner ahead of the doctor or things like that, but there's a whole orchestra that happens behind the scenes to make all of that possible.

It's also a visual way of being very explicit about just how much of an undertaking it is to support one patient. It takes a lot, a lot. And so just really grateful.

(musical transition)

We did it you all. I just had a third seizure. Thank you to everyone who has rallied around and helped me with this last tactic.

It’s noon and it probably started about 45 minutes to an hour ago. It was again more intense than the second one. The second one was more intense than the first one. I still did not go unconscious though, which might sound like a good thing, but that was our goal for the third one.

I feel good. I of course wish that we had captured more because the more we capture, the more information I have, but I feel good about having three.

Funny enough this morning when I ordered lunch I decided that I was gonna get two chocolate chip cookies and a scoop of ice cream and make myself an ice cream sandwich for dessert. Unintentionally, I gave myself a little celebration for hitting my third seizure and hitting the goal.

I do count this as a win, even though it's challenging and difficult and exhausting mentally, exhausting emotionally, exhausting physically, I do count all of this as a win. I feel like being here, extending my stay, all of this is worth it. It’s been good. I’m in a good place today.

(musical transition)

My team just came in and we debriefed the seizure that I had and they said no more. We're done. They gave me a preliminary idea of what their thinking is going on. They're of course gonna go back through the seven days of video and audio and reporting and all the things that they gathered with a fine-tooth comb and look everything top to bottom.

I am about to be pumped in my IV with drugs again so I will stop having seizures again, which will be great and I am gonna be discharged tomorrow.

It is insane to say, but having been bedridden for seven days, other than a shower, the thing that I am most excited about is sleeping in my own bed. I think that's just mostly a sign that my body just is done.

The third thing that I'm looking forward to is being outside in fresh air.

This has been not just challenging from a medical standpoint but challenging from a lifestyle standpoint. It has given me a lot more empathy for people who are bedridden for various reasons, whether it be temporary or lifelong. People who are in wheelchairs, people who are not as able-bodied as I am. I feel very, very fortunate to have generally a healthy body. My tumor doesn't stop me in my day to day. I am still able to work full time. I'm still able to do the kind of workout that I want. I'm still able to travel. I'm still able to drive. I'm still able to do all the things that are important to me in my life and I'm really grateful for that.

I've been in this place before where I have experiences that give me humility about my life, gratitude for my life, but most importantly understanding for others and empathy for others. And what's challenging is remembering that because the more time that passes from that moment of recognition, it's like you forget about it. There’s distance between you and that moment.

The reminder that life is fragile. The reminder that I am extremely fortunate. The reminder that I need to care and be gentle with the people around me because you never know what's going on with them. When someone shares that they’re going through something, even if you can't understand why it's so difficult for them and even if you can't understand why it's important to them, the bottom line is that it is important for them. I have to show up for them and I need to be there for them and be understanding.

That's what I'm walking away with this week and I really want to try hard to not go through that same cycle that I've done before of the more distance, the less I remember. I want to do a better job of holding onto this empathy and holding onto these lessons and not just holding on to them, but putting them into practice.
If you're up for the challenge, I invite you to do that alongside me.

(musical transition)

This week was hard and I knew it was gonna be hard. I did a lot of work to prepare for it, medically, mentally, physically, all the things to make sure I was in the best shape to handle it all the way around and even still, I knew it was not gonna be easy and it wasn't easy. It was very, very challenging. And at the same time, both can be true. I'm so glad that I've done it because we do have more information, which is going to lead to more answers, and a path forward. It's definitely worth it.

(musical transition)

I've been home for two days now. Prior to today, I have been very, very tired. I'm not sure if it's just catching up to me, or if it is a side effect of the new medication that I'm on, or maybe a little bit of both. I’m hopeful that whatever it is, that it's temporary because the level of tired that I feel throughout the day is not conducive for being productive and working.

Both nights that I have been home, I've woken up thinking I'm still in the hospital. I don't know what that's about. It takes me a solid five to 10 seconds after waking up to realize that no, in fact, you are in your bed at home. You are no longer in the hospital.

Aside from those two things, I feel back to my version of normal, which feels really good because I haven't felt my version of normal in a very long time. Changing my medication was definitely a good choice.

Obviously we got way more out of the inpatient visit on the seizure front, but I also gained clarity on just how much my mood was impacted by the old medication and I just feel so good to be me again. And I really, really, really hope that it sticks.

(musical transition)

Over the last six months, I have done radiation. I have done CBT for insomnia. Of course, I had my inpatient testing. I have had medication changes, been working with a neurologist who specializes in migraines, lots of different things over the last six months trying to figure out a path forward. And in two days, I will have the final step of this phase, at least that's the way I'm thinking of it, which is the six month MRI post radiation to see what the success is.

Immediately following that, I meet with my team. And my anticipation of meeting with my team is that we will have a clear plan on all fronts about how to move forward. How do we move forward with the tumor? How do we move forward with the epilepsy? How do we move forward with the sleep stuff, with the headache stuff?

We've got all this information, now let's recalibrate. The hope is that that recalibration means there's nothing else that needs to be done right now, that I go back into watch and wait. There's lots of other possibilities as well.

But the reason why I'm so emotional lately actually has nothing to do with the medical side of things. As we know, it rarely does. My emotions as of late come down to a real struggle in how to make my life what I want it to be.

After my original diagnosis, I had so much clarity and zest for life. A switch flipped and I didn't want to do the work that I was doing anymore. I really focused in on evaluating relationships in my life and investing in those that I wanted to cultivate and engaging in conversations with those where the relationship wasn't working to find out can we find a path for it to work or do we need to let this go?

I really dug into my health on a nutrition and physical side of things, but most importantly I prioritize traveling and seeing the world and collecting more stories than I have time to share them.

After this recurrence, I am really struggling to be motivated around work. For the first time ever, I spoke out loud a thought that I've been having and it scared me when I said it out loud because it became real and that thought is if I could figure out a way to accomplish all my goals and live without having a job, I would do it in a heartbeat.

And that might sound so simple. What's the big deal about that? A lot of people feel that way. What is challenging for me about that is twofold. One, the first half of my life was really spent around my professional identity. That was the most salient part of my identity. To now be in a place where, not only am I ready and happy, but I actively want to completely let go of that side of me is a struggle because it was so central to my core.

Part of what I'm feeling is disbelief. I can't believe that I had that thought, let alone that I said it out loud. The other part is just the reality of things. I have chosen not to have a partner and have a family. The option of not working really is not an option. There is no second income, there are no backup plans. I am my own backup plan.

I just feel like all I want to do is spend the time that I have with the most important people in my life, doing the most important things to me. Working does not fall on either one of those lists. So it's been a struggle figuring out what does my path forward look like? What's realistic? What's responsible? But also having another voice that says fuck responsibility and fuck reality because your reality is an anomaly and that's where I am today.

When I meet with my team in two days, they may have information that changes this entirely. I'm absolutely open to that. Even if they don't have anything that changes it entirely, my perspective on things can change. I learn, I grow, I evolve. I recognize that this is where I am today and I may not be here tomorrow or the next day or next week, next month, next year, but this is my current emotional state headed into my six month checkup with my team in two days.

(musical transition)

It is the day after my MRI and it’s taken me a little while to do this recording because I've had a lot of processing to do.

The good news is that my tumor has shrunk a little bit and that is better than they expected. The goal of radiation is really just to keep it from growing more. When it goes the opposite direction and shrinks, that's like icing on the cake. That's definitely good news. And I very much hold on to that.

On the results from the epilepsy monitoring unit side of things, I want to be really honest and transparent that I have spent a lot of time thinking about whether or not to include this because not brain tumor related and it in some way steps outside the intention of this podcast, but ultimately I have decided to share because this is my version of a secondary diagnosis, which many of us face when we're getting scans and being tested as frequently as we are.

The bottom line is that when I was in the epilepsy monitoring unit having seizure events, the EEG did not change at all. There could be two reasons for that. One of which that my tumor is located deep in the middle of my head and when you have sensors on the surface of your head, they often don't catch seizure activity that deep in the brain, especially in the case when seizures start in an area and don't spread to the entire brain. That's why they inserted the sphenoidal sensors between my jaw joint to try to get closer. But even still, those may not pick up seizure activity.

It’s still possible that seizures are happening. They're staying very focal around my tumor and not spreading and just not showing up on the EEG because of the limitations of that type of test. So that is option one and with that option I will stay on anti-seizure medication because while we can't be sure that there are seizures, we also can't be sure that there are not seizures.

The other possibility in this is that these are non-epileptic events is the terminology that was used. Meaning they are not seizures and instead this is a trauma response in my body. The way that my doctor explained it, she is phenomenal at this kind of thing. And I hope I do it justice because I'm not as good as she is.

I have had a lot happen and my brain is in overdrive protection mode. It is interpreting any little small thing that is different or out of the norm as a threat and just like a big red alert. It reacts this way even in situations where there is no threat.

She explained that often they see these non-epileptic events showing up in situations where people experienced trauma, particularly in childhood, and particularly sexual trauma. That hit me like a ton of bricks and I have spent the last 24 hours processing and making sense out of this information and going back to the circumstances surrounding my first ever seizure and comparing those to events earlier in my life and seeing clear lines that connect those events and coming to terms with this.

In some ways it completely makes sense. Our bodies are fascinating. On the other hand, from a medical standpoint and physiological standpoint, it's hard for me to understand how the body can react in such an extreme way to something that happened years ago. Why is it just now showing up?

And then my brain goes, well it probably has shown up before but I wasn't paying attention and because I wasn't paying attention the body's reaction and response went to more extreme measures to catch my attention and say, listen to me, I'm trying to tell you something.

Up until my brain tumor diagnosis, I was very good at not listening to my body. I can definitely see a scenario where my body was trying to send smaller signals that something is not right and you need to get this addressed and I shoved it down and ignored it.

In the most likely scenario, I just wasn't even conscious of it in the first place. Unwilling to acknowledge it.

I may not be having seizures, we don't know. I almost would rather have seizures over PTSD, which is the letters that she used. So I have been referred to trauma therapy in hopes that things can be unpacked and resolved and I can move forward from things that I had no idea were still with me in ways that significantly impact my life.

That is not a brain tumor story, but I think it's important to share because I want to walk the talk. I want this podcast to be what I set out for it to be, which is to talk about the things that we're not talking about.

Secondary diagnoses are real in our community because we are getting scans and testing so frequently that other things do come up. Also trauma is very real in our community because of what we put our bodies through.

If you are experiencing this, I want you to know that you are not alone. There's at least one other person experiencing what you're experiencing. And I'm very sorry that you're going through it.

(musical transition)

Bri (57:10)
Thank you for being part of the Rewired Minds community. Full show notes, resources, and a transcript for today's conversation can be found at rewired-minds.com. If you or someone you know has a brain tumor story to share, I'd love to hear from you. Visit rewired-minds.com to learn more about collaborating on a future episode. This podcast is a one woman labor of love. It's a true honor to bring it to your ears and facilitate connection among the brain tumor community. If this episode resonated with you, please rate, review, and share with someone who might need to hear it.

Bri (57:43)
The stories shared in this podcast are personal accounts from the brain tumor community for informational and awareness purposes only and are not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation.