Ep 17 | March 25, 2026 | 29 mins

In this episode of Rewired Minds, Bri Salsman speaks with Nola Hynes, a brain tumor survivor who shares her journey from diagnosis to recovery. Nola discusses her initial optimism upon being diagnosed with a meningioma, the challenges she faced during treatment, and the impact on her family life. She reflects on the importance of communication with her children, the struggles of dealing with cognitive decline, and her eventual path to recovery through advocacy and community building. Nola emphasizes the need for support and understanding among those affected by brain tumors and the importance of sharing experiences to foster healing and resilience.
Nola's journey began with a diagnosis of meningioma in 2019.
She initially felt optimistic, believing it was the best type of brain tumor.
The recurrence of her tumor less than six months later led to significant challenges in her daily life.
Nola experienced cognitive decline and feelings of dementia post-treatment and leverage psychedelics to help her recover.
She struggled with how to communicate her health issues to her children.
Nola's perspective on life changed, focusing more on family and less on career aspirations.
She found humor and resilience in her experiences, using dark humor to cope.
Nola is passionate about advocacy for brain tumor awareness and support.
She aims to create community spaces for those affected by brain tumors.
Nola believes in the power of shared experiences to aid recovery.

Resources
Check out a list of the most common medical terms relating to the brain tumor experience: rewired-minds.com/terms
Connect with brain tumor organizations here: https://www.rewired-minds.com/braintumorresources

Connect with Rewired Minds
Website: rewired-minds.com
Facebook: https://www.facebook.com/RewiredMindsPod
Instagram: @rewiredmindspod
LinkedIn: https://www.linkedin.com/company/rewiredminds

Connect with Nole Hynes
Email: meningiomaminded@gmail.com

Be a Guest
Interested in being a guest on a future episode? Visit rewired-minds.com/guest for more information and to submit your request.

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 (00:29)
Today's guest is Nola Hynes, who was diagnosed with meningioma in 2019 and has had a recurrence as well. Welcome, Nola. How are you today?

Nola Hynes (00:38)
I'm doing well, thanks, Bri.

Bri (00:40)
Good, thanks for joining and being willing to share your story. What else would to share as an introduction to get us going?

Nola Hynes (00:47)
I am a 47 year old mother of two. I have a son who's 16, a daughter who is, well almost 16 and a daughter who is about 10 and a half now. And I was living abroad in Oman for about five years, almost five years when I was diagnosed with my meningioma.

Bri (01:02)
What did life look like before all of this happened?

Nola Hynes (01:05)
At 32, I had taken time off to raise my son. And then at 36, my husband was offered a position with his company overseas in Muscat, Oman. And we thought that would be a great experience. And then right around that time, I got pregnant with my daughter. And so we decided we were gonna spend three years there and then he was extended twice while we were there. So we were preparing for our move home to the US. We had made the decision in the summer of 2019 that we were going to be returning. And so we were preparing to come back. We had bought our house. I was starting to look at what kind of work I was going to do when I returned to the US. We hadn't lived near our family and friends for a very long. And then we moved back amid the pandemic. And so was like all of this kind of craziness happening at the same time, some good stuff and some, you know, craziness with the pandemic.

But also we were really looking forward to getting life restarted in the US. My daughter hadn't lived near any of her family or our friends for the first five years of her life. And my son had always wanted to come back to the US. And so it was, you know, we had a lot of things to look forward to at that point, I guess you would say.

Bri (02:03)
You’ve laid out this vision of what you imagined you were coming back to the states to, but obviously that wasn't the case. And so what were you noticing in terms of symptoms or signs that prompted you to investigate your body further?

Nola Hynes (02:20)
So the first day I ever felt it, November 6th, 2019, I was sitting at the pool watching my son at his swimming lessons. And I got that feeling that you get sometimes in the corner of your mouth, if someone sprays bug spray or sunscreen really close to you and it gets in your mouth a bit. And it was just kind of like a little bit of a burning and a tingling sensation.

When I got home that evening, it was still there and I commented on it to my son and my husband and my children. And I was talking about it the next day. It was still there. That was a little disturbing and I kind of followed it, you know, over like the next week and I noticed it was following the path of nerve up my face. And so it went from that corner of my mouth down. It covered maybe three quarters of an inch to an inch to the left of my lip and below my chin, and then it went up along the left side of my nose, and then it went underneath my left eye, and then it went up my left temple. And then from there, it started going numb from the midline of my face over. And over the course of about five weeks, I lost all feeling in my face.

Bri (03:20)
Did you receive your diagnosis before you moved back to the States and then you got treatment in the States?

Nola Hynes (03:26)
I picked up my report in an MRI lab in Muscat, Oman on a Saturday. I met with my neurologist there on Sunday. He confirmed the diagnosis. And then by Tuesday, I had spoken to a neurosurgeon in Texas, which is where I planned to go back to for treatment. And I came home to the US. I think I arrived in the US on December 15th. I had surgery on December 31st.

Bri (03:45)
You all were already planning your move back to the States.

Nola Hynes (03:48)
Yes we were, but we weren't moving back until June of 2020. So we had, we were, my husband had one year left of his contract and we were gonna have our children finish up their year of school there and then move back that summer.

Bri (04:01)
Got it. So this was already in the plan. The diagnosis just kind of sped things up a little bit, it sounds like.

Nola Hynes (04:06)
But what ended up happening was we came here for the treatment and then we went back to Oman.

Bri (04:11)
One of the things that jumped out to me in your interest form was you shared that you are delusionally optimistic. What did you mean by that?

Nola Hynes (04:19)
So when I was first diagnosed, I found out about my meningioma on a Saturday. The MRI lab that I had it conducted at called me, told me that my report was ready. I picked it up. Before I even left the parking lot, Google MD had informed me this was the best brain tumor. They do not ever recur. They are not a problem. You remove them. They're just, they're nothing. They're the most common, the best brain tumor. I found out about the brain tumor on December 7th, 2019. I was home for surgery by the 15th and I had surgery on New Year's Eve of 2019 and they got about 95% of it.

By the time I had had my surgery, I had lost all the feeling from midline of my nose to just past my left ear. They had said, we can't guarantee you get any of that feeling back. You definitely won't get all of it back. Within two months of surgery, I had all of the feeling in the left side of my face back.

And you know, they had some great news, grade one, these don't recur. And so I was marching on with life. I was just diagnosed with the best brain tumor. This thing was never going to recur. I wasn't altering my life at all at this point, you know? And so I went on with my life. We went back to Oman. I even had like a brain cake for my next birthday a month and a half later, you know?

Bri (05:20)
I love it!

Nola Hynes (5:21)
So I mean we were like joking about it and laughing about it. And I mean, it was, you know, it was no problem. We were not worried about this.

Bri (05:30)
And so then you move back to the States and you're getting settled back into your life here. And you that's when you learned about the recurrence.

Nola Hynes (05:32)
Yes.

Yes.

Nola Hynes (05:37)
I was planning to move home that summer, go back to work after being a stay at home mom for 10 years. And this wasn't going to be an issue. I literally didn't even tell my children. It's just, it's not going to be a thing. It's just a tiny little brain tumor in the back of my head. We're not going to worry about this. And when we moved back that June, literally within two weeks of moving back, my face started going numb again. I had gotten all the feeling back, even though they didn't expect me to.


It started following exactly the same path. And in the beginning, I was kind of, no, no, no, no, no, no, this isn't happening. There's no way. This was never supposed to come back.

Probably early July, I started reaching out to my doctor saying, oh, this has only happened to me once before. And last time you guys diagnosed a brain tumor, makes me a little bit nervous. And then I started reaching out to them more. And I was like, could we move up that appointment?

So on August 8th of 2020, they diagnosed my recurrence. And at that same time, they diagnosed mutation that is associated with it. It's an AKT1E17K mutation, which is an oncogenic mutation. It is associated, I think, most commonly with endometrial cancer, but also with some forms of lung and breast cancer. And so they told me at that time that I was inoperable. They had debulked my tumor as much as they could. My understanding now is that it kind of looks a bit like a stick dog. It's got a body and a neck coming off the top and then like four appendages coming off of the bottom.

And so I saw my neurosurgeon in the morning and he confirmed my recurrence and the mutation. And he said that, you know, they'd like me to stay around. They wanted me to see my radiation oncologist that afternoon. He was considering gamma knife. And so by the time I got in to see her that afternoon, she told me, the radiation oncologist told me that she knows Dr. Demonte was thinking about gamma knife, but she didn't think that was the best approach. And this is why. It was basically because it's a stick dog. And she said, having to be so exact with, basically a pen device across these different lengths she thought wouldn't be very accurate. And so we ended up doing something called V-MAT. It's like an arc type of radiation where they map your tumor in three dimensions and they rotate the machine around you in 360 degrees one way and then 360 degrees back and it adapts to what that map shows in each dimension and it hits it from that angle. The idea being to get as much of it from every possible angle without damaging all of the brain tissue around it. Unfortunately, it does kind of damage a little bit of the brain tissue going all the way around. But even still, I was delusionally optimistic. I thought I'm going to get through this. I'm going to get back to, I'm going to go back to work and I'm to march on with my life.

Bri (08:02)
What did you notice in terms of your experience was different the second time around when you learned of your recurrence versus the first time around?

Nola Hynes (08:13)
Even though they told me that I had recurred, and this was I knew a really rapid recurrence, I was still really optimistic. I mean, this still, from my perspective, was a benign brain tumor. This wasn't supposed to be a problem. And from my perspective, still, it's not necessarily the brain tumor so much as the treatments for the brain tumor is kind of how I look at it. You know what I mean?

But I've gone back and forth since then. Do I really wish I would have known what was coming? I don't know.

Even though I was dealing with fatigue and I could feel my executive function and those things slipping like the very first week I was in radiation, I was still like, I truly believed that I was coming out of radiation and going back to work and life was going back to normal.

They had told me at that point that they did expect that I would recur again. They couldn't really tell me how long it would be before I would recur, but that the mutation makes me treatment resistant. I think by that point, most people would be feeling a little bit concerned and I still really wasn't. I believed I was gonna get through radiation. It's kind of rough right now, but then I'm gonna get my house organized from this move in and I'm gonna get on with like working and getting our lives back to this plan that we had had in June of 2020 when we moved back.

Bri (09:16)
And when did that change?

Nola Hynes (09:18)
I had been working in procurement before having my son. And so that's kind of what I had thought about going into. And I did actually go to one interview after radiation and realized like I wasn't even sure that I answered the questions that I was asked during my interview. I had always been super confident in interviews before. I would tell, well, what's the greatest thing about you? What would your former employer say about you?

I'd say, Oh, they say I walk on water. And, you know, I projected an air of confidence and I felt like in my interviews, I couldn't even answer questions anymore.

This is like the delusional level of optimism, right? I mean, so what if it's a brain tumor? Yeah, I mean, it's radiation, but I mean, I'm gonna go through this radiation and then once I get through the radiation, I'm gonna go on with life. And I didn't realize that isn't necessarily exactly how it is when you get treated for a brain tumor. But I think also having had such, I would not necessarily easy, but relatively easy experience with my craniotomy. didn't expect it to be so hard.

Bri (10:08)
Yeah, what was hard about it?

Nola Hynes (10:10)
We moved in to our house the day that I began radiation. And I like fatigue every day, like as soon as I was done with radiation, I power walk in there like supercharged, super energy, and then be like holding onto the rails on the wall on the way out. I was so tired and so I would nap.

But I, you know, I believed and I don't know why I believe this. I think I just thought it would get better after radiation was over that like that fatigue, all of those things would just ease and they didn't. Like after radiation ended, it just seemed like every month, it got a little bit worse. And in November, I look at my chart, it says patient reports she doesn't like who she's turning into. She's not a nice person anymore. Denies suicidality.

And I wasn't at any moment suicidal. I wasn't depressed. I felt like I was totally grounded in reality. I wasn't capable of things that I did last week. And I could remember being able to do those things, but I couldn't do any of them, like keeping a calendar or managing a list or, I would zone out and be late to pick up my children from practice or from school. I couldn't remember meals that I cooked. I cooked everything from like taste and from memory. I couldn't remember any of that. All of these things.

I had my first neuropsych evaluation, a year out from my craniotomy. When my neuropsychologist asked me to describe what it was that I was experiencing, I said, I feel like my IQ dropped 30 points and I've lost my executive function. I feel like I lost all of my auto programming, everything I learned to do between ages two and 42. And I said, a list can't help me. I can't follow a calendar. I'm like, Drew Barrymore in 50 First Dates. I need someone to follow me around with the camera all day, every day, recording my life and playing it back to me so I know what's going on. My cognitive function was severely diminished. I did lose my executive function. I couldn't follow maps. I left stoves and ovens on. I was basically going into dementia.

And he told me that what I had assessed was pretty much accurate, and that there were these minor deficits in these areas that I had identified. And I said, OK, great. So what do we do about that? And he said, nothing. And I laughed. And I said, no, what do mean? I was like, therapy. And he said, no, there isn't anything. It's irreversible.

I actually said to him, I don't know, maybe I have a bit of a God complex. I've just never actually failed at anything before. Some things just take an exceptionally long time. And I kind of had this like, I'll recover or die trying kind of attitude, but from their perspective, no therapy to be offered, none of these things.

And so I looked at it I was like, okay, well, I'm struggling with auditory processing. So I'd listen to podcasts and I try to remember, try to maintain attention and these kinds of things. I would say I probably averaged an existential crisis every four to six months after that point, as I came to grips with the reality that no, this wasn't going to get better. But the very first existential crisis I called my neuropsychologist and I said, correct me if I'm wrong, you said irreversible, but is it progressive? And he said, yeah Nola, it appears to be. And I was like, okay. But even still, even at that point, I didn't believe that this was irreversible. To me, forever seemed like an incredibly long time, right?

This is a meningioma. This isn't a terminal diagnosis in and of itself. And so, like, obviously I have a lot of years left to live, like, that's a very long time for me not to recover. It was kind of how I was looking at it.

But I did, I continued to decline for about two years and I felt like by the end of it, I couldn't, there was no following maps, there was no showing up for anything for my kids. Nothing. Our life was like falling apart. I couldn't do any of the things that I had done previously.

Bri (13:25)
Speaking of your kids, how did you have these conversations with them?

Nola Hynes (13:29)
So that was an interesting thing because when I was first diagnosed, because of the fact that I thought that this wasn't a very big deal, I didn't actually discuss it with them.

This is just an aside, but my son had been diagnosed with type 1 diabetes and hospitalized in diabetic ketoacidosis less than five months before I was diagnosed with my brain tumor. He was still not really even comfortable in his own skin and in his own life and was worrying about his own life. And I was his primary medic on campus all day at school.

We returned to Oman two weeks after my surgery. I was on campus as his medic every day from two weeks after surgery. And so I didn't feel at that time, and was it the right decision, was it the wrong decision? I don't know.

My children had struggled so much with his diagnosis and with the way my daughter was four years old at the time, kind of changed the dynamic in our family.

I don't know that I made the right decision in that case and I've questioned that many times since. And so when I recurred, it was kind of one of these things like, I hadn't even told them about this before and here I am. Like I'd had surgery and I told them that I was having surgery for the headaches that I had had.

This time around, it was kind of like, I didn't really know, you know, what do you do? And so I sat them down and I basically told them that when I had had surgery before that it was for a tumor and they kind of all got a little scared. I said, but it's not cancer, don't worry. It's not cancer. And it's just extra cells, but this is a very confined area of the body and there's just no room for extra cells. And I think we can all agree, mom's got the biggest brain and of course they rolled their eyes.

So I told them, I said, every once in a while they may want to do some little treatments on it. And this is one of those times they wanna do some treatments. And so I'm gonna go through, you know, radiation for this.

And it was an interesting time because it was COVID and the schools were closed. And I had just missed the cutoff for signing them up for one of the neighborhood learning centers. They were just going to homeschool. And then I found out that I was going to be at radiation every morning when they were supposed to be doing their homeschooling. And so that was another one of those things that we had to juggle.

It's one of those things now we joke about, but at the time don't think we really knew quite what to expect. And so they were amazing. They were like the most compassionate people that I knew as I went through this. And I failed them repeatedly over and over again, and I felt awful about it. And they were truly like the greatest manifestations of kindness, compassion, and love.

They would say things like, you didn't choose this. You weren't always this way. It's not your fault, which honestly, as a mother who's like failing their children just makes you feel worse. I will say it was because of that that I was never going to accept this. They deserve way better than this. And I thank them for that. Like they kept me going.

You know, it made me sad because I was thinking at the time, like, I'm supposed to be raising you. I'm supposed to be taking care of you. And like, look at being so compassionate and so loving to me. And I'm failing you all over the place. It was awful. I've said many times since to both of them, I hope we live long enough that like it's a distant memory and you don't really remember it eventually. It'll just be that time mom lost her mind.

They know everything I've done the past five years to recover has been about coming back to and being here with them. A long time ago, I got got to a point where it's like, if I could just come back and take care of them, I don't care if I ever get a job again. And it's been years now that I've felt that way. And their lives are going well. And that is enough for me.

Bri (16:30)
And you mentioned this piece about feeling like you were failing them. What aspects? In what ways?

Nola Hynes (16:38)
As I was recovering, I was working with a psychiatrist who does actually work with adults with dementia. And she said, what happened to me is rare. And it is. My understanding is about 2-5% of people who undergo intracranial radiation will develop dementia. And that is essentially what happened to me. And so if you can imagine someone with dementia, as they're declining, they're losing all of their abilities. They're becoming emotionally spun out. They're triggered and agitated and irritated all the time. They're not processing what's happening in the world around them. And they're not really able to do anything really particularly useful. They can't really take care of themselves and they can't really take care of anybody else. And so I was able to do like the bare minimum, but I couldn't organize the house that we moved into for four years. Well, not four years, maybe three years. And I wasn't able to cook for them anymore. I dealt with crippling fatigue every day, like every day. If I didn't nap for two to three hours every day, I would be crawling to bed at five or 6 p.m., literally crawling, physically feeling like I was breaking.

I didn't take stairs or escalators for, oh God, a year and a half, even after having gone through physical therapy for vestibular balance issues. I like, there was really essentially nothing that I could really manage. I couldn't clean and organize my house. I couldn't manage my kids' calendars. I couldn't, like none of it. You know, like all of the things that we learn to do as like a functioning human, the things that we don't really think about – following a map, learning our way around a new neighborhood. I couldn't remember my way around a city that I had lived in for over 20 years.

It was like straight up like having dementia. I would dissociate. I would fuse conversations together. I would zone out and miss medical appointments, miss picking up my children from school. I would leave the stove and the oven on. I would leave the doors unlocked. I mean, all the things that you imagine an adult with dementia doing, I did those things. It was awful.

Bri (18:11)
And I'm noticing that as you speak of this, it's all in past tense terms, which leads me to believe that this is not the case anymore. So what has happened since all of this?

Nola Hynes (18:24)
I began really trying to work on it after my neuropsychologist told me that it was unfixable. Okay, I'm gonna listen to podcasts. I'm gonna read and I'm gonna research and I'll write. Afterwards, I'll do all these, but it was like this continuously collapsing house of cards. Like no matter what I did, it didn't really get better. And when I went back for my second neuropsych evaluation a year out, they tested me again and they asked me what my assessment was and I said, I think I've made modest improvements in the areas that I've worked on and I think I've declined everywhere else. And he confirmed that and he even made me a visual aid to encourage my acceptance of that.

They had sent me to see a psychologist who was trying to help me accept and accommodate it and she had encouraged the use of lists and calendars. Nobody really understood those were abilities I'd lost. Nobody could tell me how to relearn how to do any of this stuff. And I was considered incapable of relearning. And once you develop cognitive decline from radiation, it is considered irreparable, so they weren't wrong. According to all research I read, it is irreparable

I would say August of 2022, I felt like I'd made really good strides in auditory processing in a bunch of other areas. And then in September of 2022, I started losing my long-term memory. I was losing my ability to remember my life at that point. And I freaked out.

And then inspired by stories of veterans, which had just kept popping up in research that I was doing for other things, I began a journey to heal my brain with psychedelics on October 7th, 2022.

While I did not begin recovering there, it took about eight months for me to begin getting cognitive recovery. I did begin getting healing for like inflammatory and connective tissue disease that I have underlying.

In June of 2023, the dementia began reversing. I came out of dissociation. I hadn't realized until that point that I had been mildly dissociated. I stopped dissociating the summer of ‘23. And I've been recovering since then. I've regained neuroplasticity and neurogenesis. I've regained my executive function. I can manage lists. I can manage calendars. I have organized my home. My children's lives are together, living their best lives, calendars going again.

Did it happen as quickly as I wanted to? No. Am I where I want to be? No. But I am so far from where I was that I believe if I keep going, I'll recover. And a lot of my whole life now really is my kids and continuing to work on my recovery. And so it's yoga and it's acupuncture and it's research on herbs and these kinds of things. It's me being obsessive about the diet that I always wanted to eat anyways, but that I couldn't because of my underlying disease. I'm as natural and organic and high protein and all of these things, anti-inflammatory diet as I can be to encourage my brain's health.

It's been a journey trying to figure out how to make it all work. I learned from veterans along the way. One thing that I've realized is any of us with brain diseases, whether it's an aneurysm or some sort of encephalitis or a brain injury or a brain tumor or brain cancer, we all have commonalities between us we talk about headaches, we talk about dizziness, some people will talk about like mood changes and things like this and one thing I've learned about radiation is, from what I see in research, about 90% of people who go through intracranial radiation and survive to one year will develop some form of cognitive impairment. It has been identified as early as three months post-treatment, with the most common thing being memory.

But the longer that we live after after radiation, the worse from what I see in the research it tends to get. As far as I know, at this point in time, I'm the only person I know who's actually recovered from this.

My mother, my husband, and I met with my, the psychiatrist that I was working with who helped me tease out the parts of what's brain injury, what's PTSD, and what are we doing here? Help me really understand it. And I met with her in October, she told me and my husband and my mother that what happened to me is very rare.

I think the thing that I didn't realize at the time was that the tumor doesn't necessarily have to be a problem in and of itself. There are very few treatment options for meningiomas, and it really tends to be surgery or radiation and both of those induce brain injuries. Some people are more durable to those things. I have inflammatory and mixed connective tissue disease. We're the people most likely have inflammatory responses to any kind of treatment. And so if that's in your brain, it's not going to be ideal there, right?

My number one goal at this point is just kind of to stay on my best behavior.

Bri (22:39)
Yeah. I hear so much determination and willpower in your story. What has this journey taught you about yourself?

Nola Hynes (22:47)
That I'm delusionally optimistic.

Bri (22:49)
Hahaha!

Nola Hynes (22:50)
I’ve always said there's nothing I can't make jokes about and having survived a brain tumor twice and dementia, there really isn't anything I don't make awful jokes about. It's our greatest source of humor in this house. We make jokes about it all the time. And I would say, I don't know, for me it's just I don't know how to be any other way. I call myself a dark-humored Pollyanna, I guess is kind of what I've figured out about myself. Like I do have really dark humor, but I'm also like incredibly optimistic. I am the well, where-there's-life-there's-hope kind of person. It's just maybe not necessarily always gonna be pleasant. Like I've always said to people like, it'll pass and might pass like a kidney stone, but it'll pass.

I do believe that my brain tumor it's not the thing that kills me, it's the thing that makes me stronger and I do feel like I've come out stronger. I think like having to recover in this way and having to relearn everything, I tell people, I think I'm more efficient now. I don't remember how I did things before, but I do believe that I do them better. So maybe it wasn't so bad to have a brain break like between ages like 42 and 44 and like reboot at 44 and like reformulate how I do everything.

Would I recommend this as the way to do it? Not necessarily. I think there are better ways to rethink things, but you know, it hasn't been all bad. Do I ever want to do it again? Absolutely not. No.

Bri (24:00)
Yeah, yeah, I get that. I love that word reboot. Your brain is like the CPU for your body. And so just like your computer or laptop needs a reset or a reboot, sometimes, apparently our brain does too. And for some of us in a really drastic way, unfortunately.

What matters to you now in ways that it maybe didn't matter to you prior to your diagnosis?

Nola Hynes (24:25)
Going back to work was something that I thought that I was going to do five years ago. And it seemed really important at the time. And I would say that doesn't seem really important now.

My son will be going off to college in two and a half years. He'll be graduating high school. And so I think in that way, it's kind of made me slow down and think, okay, so would I like to have gone back to a career to have had some other, yes, whatever, but I didn't have any regrets about having spent my life that way for 10 years prior, it just became permanent, kind of not by my choice, but also I think this is where I should be, like after having missed time.

And then the other thing is I think I have a better perspective now. There's a lot less things that upset me. I don't really get angry. First of all, I think part of it is that I am Drew Barrymore from 50, 50 first dates and I'm not likely to remember five minutes from now why I got mad at you. But that's great. There's no resentment. But I think also I've realized that there's not much that's so earth shattering that's worth getting upset over. And so, in that respect, I have perspective. There are the things that we can control and things that we can’t and I accept myself as the thing that I can control. And so I've had a lot of luck in that respect.

I'm a lot more calm, as things go on. I don't worry, I think as much. It's a weird thing to try to describe, but I think, you know, most things aren't as big of a deal as I thought they were maybe before.

Bri (25:44)
How has your experience with your brain tumor and this journey that you've been on rewired your mind?

Nola Hynes (25:49)
It's made me feel like I really want to spend my time in the presence of people who have brain tumors, brain injuries. And so going forward, I've been working in advocacy, letting them know how to do this and trying to help support their journey and hopefully talking to legislators about these things as well and how to get funding for people going through these treatments to be able to recover from the treatment effects and to have true meaning in the word survivor, right? Because to me, I felt like I was just barely breathing and to me, that's not really surviving.

There's something to be said for having meningioma. We are going to be the longest lived brain tumor people, but for those of us who recur, we're going to have to go in and out of treatment. So other treatment options would be great, but also ways to not be quite so damaged from our treatments would be amazing as well. To be protected or to have ways to recover, I think is essential and those of us with brain tumors and brain cancers, we never really go back to normal. And what normal looks like very often in our community is very different from other communities.

I think, you know, really when we want to get out of a bad place, go find someone who's been in that bad place and find out how they got out of there. And that's kind of what I did. If you see yourself in somebody else, maybe you'll be able to find a path towards it. And so I'm hoping to be able to create some of those spaces and I'm excited about what you're doing. I think that this is very important for awareness and for understanding as well.

Bri (27:11)
Thank you so much, Nola. And I imagine that there are many listeners out there who might want to link arms with you and walk by side by side with you in your efforts on the legislative front, on the building community front, or even just want to personally connect. If that is the case, where can they find you?

Nola Hynes (27:28)
Anyone who wants to reach me can just email me at meningiomaminded@gmail.com and I'll be happy to respond.

I do have some survivors who are working with me on the psychedelic advocacy and I am always looking for people who are interested in being involved in creating community, growing community across the country, around the world to bring us all together.

This is the kind of tumor you can live 20, 30, 40 years with, right? And so I think that there's gonna be a need for us to have people to walk alongside of as we do it.

Bri (27:58)
I absolutely agree. Well, I will include that email address in the show notes for sure so that people can find you. Nola, thank you so much for joining me and for sharing your story. I think people are going to relate to it in a lot of different ways in particular, your experience with psychedelics and how quickly you had your recurrence.

Nola Hynes (28:18)
Thank you for having me on.

Bri (28:25)
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 (28:57)
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.