Ep 14 | March 4, 2026 | 35 mins

In this episode of Rewired Minds, host Bri Salsman speaks with Caroline Lenher, who shares her unique perspective as a daughter of a long-term brain tumor survivor. Caroline discusses her father's journey with GBM, the challenges they faced, and the importance of advocacy and community support. The conversation delves into the emotional aspects of navigating a cancer diagnosis, the treatment process, and the impact of grief and remembrance. Caroline also highlights her transition into advocacy work, aiming to support others facing similar challenges.

Caroline's father was diagnosed with GBM in 2006 and survived for 13 years.
Long-term survivorship stories are crucial for hope in the brain tumor community.
Advocacy is essential in navigating the complexities of a cancer diagnosis.
The treatment journey for GBM often includes surgery, radiation, and chemotherapy.
Community support plays a vital role in coping with a cancer diagnosis.
The 'wait and watch' approach can be challenging for families.
Clinical trials can provide new treatment options and hope for patients.
Grief can manifest in various ways throughout the cancer journey.
Advocacy work can help others navigate their own cancer journeys.

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 Caroline Lenher
Website: https://www.coachingforcauses.com/
LinkedIn: https://www.linkedin.com/in/carolinelenher/

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.
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Transcript
Bri (00:00)
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.

Guests sometimes use medical terminology. So I've partnered with Northwestern Medicine Malnati Brain Tumor Institute to provide definitions of common terms. The full list is in the show notes.

Most importantly, take care of yourself as you listen and process.

Bri (00:33)
I'm Bri Salsman, a brain tumor survivor and life coach, and you're listening to Rewired Minds, a podcast where we share brain tumor stories that change us. Today's guest is a very dear friend of mine, Caroline Leonard, whose father was diagnosed with a GBM in 2006. Hi, Caroline, how are you?

Caroline Lenher (00:50)
Hey, Bri, I'm great. It's so nice to be here.

Bri (00:53)
I'm so glad that you were willing to jump on and I think you have such a unique perspective to share with it being your father, but also you serving as one of his caretakers as well. So I appreciate you have that dual perspective that is really unique. What would you like to share about your father to kick us off?

Caroline Lenher (01:12)
Yeah, I think my story is actually a little bit unique in that he was such a long time survivor, Bri, as you and I have talked about. He was diagnosed in 2006 and we had him with us for 13 years. So I think he has this unique story of hope and what is possible in the face of what is always a scary diagnosis.

Bri (01:33)
Absolutely. To your point, the more common story that we hear is you get the diagnosis and months, a year, it just deteriorates so quickly. And so it's really important that we're also sharing these stories of long-term survivorship and what that means and what that can look like because I hope we see more and more of these kinds of experiences as we research more and uncover more treatments and better treatments and all of that good stuff.

Caroline Lenher (02:01)
We are starting to hear more of these success stories and it is really, you know, it's promising. When dad was diagnosed, we had less than a 5 % chance of survivorship. So he was, feels like he was the beginning of what is hopefully a lot more or a lot better outcomes for more people.

Bri (02:20)
Yeah, Let's go back a little bit before you learned of your father's diagnosis. What did your relationship look like with him?

Caroline Lenher (02:27)
Dad was awesome. Dad was my dad, right? We've always been a very close family. We have a tight group of four of us, and then we have adopted family members that have come in. So we are just have always been a very inclusive and loving family. My dad was always my go to, Bri, for all of my decisions in life from, you know, college to business to taking jobs to asking for raises. Like dad was always just that guy for me. He was the one that I always went to for guidance and mentorship and advice.

Bri (02:58)
The word confident came to mind not just a father-daughter relationship. It sounds like so much more than that.

Caroline Lenher (03:04)
Yeah, he was just that. I just trusted him and you and I we were talking a little bit about this over the years, it's like when you're single navigating the world and when he was diagnosed even, I was living in New York City. So I'm in this big city kind of navigating life. And he was there the whole way with me, as was my mom. But my dad would come up and visit and, yeah, he was just very much that support and how you kind of get through life and how you make it, right? Any questions I ever had or needed, he was my go-to.

Bri (03:33)
It definitely is very clear that you all had a really unique bond for sure. When things did come up that were maybe challenging in your all's relationship prior to this diagnosis, if there was anything, like how did you all handle those challenges or uncertainty?

Caroline Lenher (03:50)
Yeah, my family has always been very pragmatic in life. And we have, over the years, there's been a number of challenges that we have encountered as a family. And we just, we work through it. And it's one of the things that is one of the most valuable elements of my upbringing is, even when there were bad things that happened or heavy things that happened, there wasn't a lot of drama around it. It was just, okay, this has happened. This is here. What do we do next? How do we work through it?

And I’ve always been very appreciative of that and I think about that a lot in how I always approached things in my life, especially again when you think about this diagnosis, we just, I don't want say we put our heads down, but we definitely came together as a unit and just took it one step at a time and that's how we just have always done things.

Bri (04:36)
I feel like you just described my family. Haha! I was just having a conversation with my sister the other day about like, we are doers. We we just get stuff done. And sometimes, I have to remind her, you know, it's OK. There's nothing to be done right now. I'm just letting you know this new information about my health situation or, how the appointment with my doctor went and this is just information for you to have. There's nothing to do right now.

Caroline Lenher (05:02)
Right? But there's that tendency. We want to fix, we want to make things better, we want to get curious, get to the bottom of things. But yeah, just times where it's like, okay, we have to dig in and do it. And I sort of laugh and, Bri, I think we've talked about this too. Like my New England roots, my English roots, I always say it, we're not really ones that are going to get touchy feely talking about all our emotions around things. We're just going to, we're just going to do it and we're going to handle it.

Bri (05:21)
I can imagine that you probably couldn't push those emotions to the side that moment that you found out about your father's diagnosis. How did you learn about this?

Caroline Lenher (05:38)
Yeah, and that's an interesting one too with the emotions and I'll touch on that as well. Cause I feel like in a lot of ways we almost did just to continue to move through things. With him, we had noticed some behavior changes and it happened very quickly. When I think back, I can think of pinpointed times within about four to five weeks of when he was ultimately diagnosed. But then of course, when you think back to a few months earlier, you can put things together, but it really was about a four week window, Bri.

I mean, I was down visiting them. They lived in Maryland. I was in New York City at the time and had gone down for Easter. And my dad took a nap after Easter lunch. And I said to my mom, what's up with that? Dad's never napped.

And she said, oh, you know, they have new computer systems at work and he's just been really stressed about it and not sleeping. So I didn't think anything of it.

Saw him two weeks later, Bri, and it was as if I was talking to someone that had full blown Alzheimer's or dementia. He was just staring at things on the ground, staring at the wall. Didn't know his name. So from there, immediately got him in to see his doctor who he had been seeing and who had diagnosed him with severe depression. But I said to my mom, this is not depression.

So got him into the doctor as soon as we could. Doctor reiterated, this is depression, to which I unfortunately had a few colorful words, as I recall. But I at the time basically said, this is not depression. I know it's not depression. And either you're going to order an MRI for him, or I'm going to take him and pay for it and come after you from a legal standpoint.

And it wasn't until that moment that we got the action that we needed. He was in the MRI within a few days and an emergency surgery within 24 hours.

Bri (07:15)
Wow. That's really, really amazing that you pushed for I just think what would be if you had not been so adamant and in his corner advocating for him. And I know that's a word that we hear and use a lot in the brain tumor community.

Our brain is like the CPU for our body, right? And so sometimes really truly can show up anywhere, physically, cognitively, emotionally, behaviorally, all kinds of different ways because our brain controls so much. And so we really do have to push for these things. What did you draw on within yourself in that moment to put your foot down and say, no, something is not okay?

Caroline Lenher (07:53)
I honestly, I think it was a lot fear-based. I have a degree in psychology. I never practiced it, but I know enough to know that depression doesn't go from zero to full blown depression in three, four, even five weeks. So I knew inherently there was something very, very wrong, not knowing what it could be. I had actually reached out to my best friend who is a doctor, different field, but she immediately raised the concern of brain bleed, tumor, things like that. So I think it was really fear-based and seeing my father who was high performer. He was a stockbroker. The man that read like a book every day or every two days, consumed everything. To see him go from that to literally not knowing where he lived, not knowing who the president was. That was really scary. And that was where I was like, we have to do something and we have to figure out what is happening to him.

Bri (08:46)
And you mentioned that he quickly went into surgery. What other treatment did he go through over the period of time?

Caroline Lenher (08:54)
Yeah, so they got him into surgery within 24 hours because the way it presented and the way we found it, he hadn't had a seizure or a stroke, which is normally how something like this presents. So they wanted to handle it quickly. And actually, Bri, we didn't even know it was GBM then. Maybe the doctors had an inkling, but that wasn't talked about until after the biopsy. So he had the emergency surgery, got him home. And then I can't remember how quickly I feel like it was a week later, we met with the doctor and that's when we learned it was GBM. And then he went into the standard protocol, which is the five days a week of radiation for six weeks. And then he took the temozolomide, the oral chemo, during those six weeks. And then there was a six month period after that, which was the standard protocol. And I still believe it is the standard protocol of treatment for GBM post-surgery.

Bri (09:45)
You described earlier having such a close relationship with him. Seeing him go through all of this, what was that like for you?

Caroline Lenher (09:53)
Scary is the word that just keeps coming to mind because it all happens so fast. So you're just moving so quickly. Everything is just reactionary, fear-based. After we learned what it was and started to kind of find out more about it, navigate it, ask questions. And of course you've heard this before. When you learn that somebody you love or that you personally have GBM, the first thing they say is don't go online, don't look this up because what you're going to find is very negative and scary.

But my family, medical backgrounds for my sisters and a lot of other people, so we asked a lot of questions and we found out a lot of information. My dad was not as aware in the beginning, obviously post-surgery, but then he did come back cognitively pretty quickly. So it was conversations that we were all having together. So we were very lucky in having him be part of it. So as scary as it was to watch him go through it, we also all have this moment of, okay, we are actually doing this with him and he can be part of a lot of the conversations.

Bri (10:57)
That's definitely a gift that he was able to be part of it for sure. From your perspective and your experience, what was most helpful in processing that fear and that feeling of being scared?

Caroline Lenher (11:13)
Yeah, I don't know that the fear of what could happen ever went away. But one of the things that we all did is dove in to find everything out that we could. So we did, of course, go online. We went to Google. We did the whole thing. But I also had a friend. My friend Ray was doing medical research. I immediately reached out to him, and he dove in, presented all of this information. Many of my friends did that, and all of our friends the medical field. So everybody came together and I will say the support, Bri, if I can think of anything that helped us all through that, either working through fear or just feeling like we had people on our side, it was all the people, the friends, the family, the people that came out of the woodwork to support us in this. I think that's what helped with that. I can't say the fear ever went away, but in working through every step of this, that is truly, for me, what made the difference.

Bri (12:08)
It's almost like the emotions still remain, whatever those emotions are, but it's an added feeling of you're not in this alone. You've got a community behind you.

Caroline Lenher (12:22)
And you made me laugh a little bit when you said that, because all I could think of was now that we're talking about this, I’m like, I wonder if it is a little bit of that like English side of me or that New England side of me. Do not have the emotion, just do what you can, do what you need.

So I do think that was a little bit of it as well now that we're talking about it is I don't have time to be scared and that's not an emotion that is going to help me right now. So let's just get into this.

Bri (12:46)
Yeah, yeah. And so then, you all do go through it with the support of community and family and friends. And he goes through the treatment that you described, what came after the treatment.

Caroline Lenher (12:57)
Yeah, after that, you get that, it's the, what do they call it? It's the wait and watch.

Bri (13:02)
Mm-hmm.

Caroline Lenher (13:02)
They didn't call it that back then. They just said, great, you know, we're done. And they sort of like cleaned their hands. I don't know if you can hear me kind of wiping my hands are like, great, that's done. So now just do whatever until it comes back. And it really was until it comes back and then we'll treat it. And my dad and I believe it was also our oncologist. We're all kind of like, that's it. That can't be it. And so that's when our oncologist started talking to us about protocols and clinical trials and things like that. And that was where we found the clinical trial that he ultimately went into and that was testing the dosage of Temozolomide with the one week on, three weeks off over, I believe it was a year, Bri, I can't remember the length of the clinical trial, but it was testing that one week on, three weeks off dosing as far as maintenance goes versus three weeks on, one week off. And it was a blind trial. So when he went in, we didn't know which he would receive. We ultimately found out that he received the one week on, three weeks off and that clinical trial has now moved forward and is now one of the standard arms of treatment for post initial treatment to help manage this afterwards. And I mean, we had him for 13 years. So I don't know if it was that. I like to really think it was that as well as all the care that we had.

Bri (14:18)
How did you all make that decision to join that clinical trial and be part of that? Because some people hear clinical trial and they might be a little more risk averse and like, that's scary to me. I don't want to take the chances. But then there's other people on the other end of the spectrum that are like, my gosh, sign me up right away. I want to do whatever I can. And then of course, everybody in between.

Caroline Lenher (14:40)
I'm trying to remember back what my role was because I remember that our oncologist presented us with options and as we were looking at the different options, that one protocol stood out because we knew my dad had responded well to Temozolomide or temadar as we called it at the time and he didn't have a lot of those side effects. So that was something that made us feel more comfortable with it. But Bri, as I remember, the ultimate decision was his.

I know we all talked about it as a family, but my dad felt very strongly that if this was sort of his course, if he had been diagnosed with this disease that was potentially going to kill him very quickly, he wanted to make sure that somebody else benefited from that. And that was ultimately his decision. And as I recall, he felt very strongly about that and giving back to the medical community in that way. So at the end of the day, it was his decision.

Bri (15:33)
I’m always so impressed with anyone who is able to be in a situation like that and have the foresight and the forethought to say, I'm going to take this opportunity and pay it forward, even if I'm not able to benefit from it. And it sounds like your dad got the best of both that it benefited him in terms of potentially, the contributor to his long-term survivorship. And also, he was able to help others through the clinical trial as well.

Caroline Lenher (16:07)
The other thing that you're making me remember too, because again, we're almost, we’re 19 years now, but I just remember his attitude once we got him back after the surgery, once he was cognitively back with us, he was always just very much of, okay, this is what's happening. I know I have lived a great life. I am at peace with what's happening and we're going to figure out. Now that I think back on it, he just always moved forward with what I would call bravery. But I think he just, he knew that his role had changed in life and what that meant and that's how he ended up wanting to do this.

Bri (16:43)
Hmm. And then I know at some point he crosses that threshold past the point where one might expect a recurrence in this type of situation. What was that moment like learning that, okay, we've, made it…

Let me think about my question, because I don't want to necessarily say we've survived, but maybe there is a we to that. I don't know. How would you describe it?

Caroline Lenher (17:07)
Yeah, it's interesting just even to think about it because one of the things from the very beginning when we learned what this was and we learned he had a 5% chance, I don't remember who came up with this spree. If it was me, if it was one of my sisters, my mom, my brother, we were basically like, great, we're going for the 5%. That's our goal. If you have a 5% chance of living, that's our goal. So we always moved forward with that in mind.

Now, in the beginning, he was going for scans all the time and then they were six months. That felt great when they were six months, but you also had that fear each time you went in and we did have a few moments where things showed up on the scan things like what we learned was necrotic tissue but you know you have those moments.

Once he was able to go to the year scan and I want to say you know we're about four years into this three years into this at this point you start to feel like wow we might have hit that five percent.

And so I don't want to say we ever became comfortable with those scans because you always worry about that. But yeah, you sort of settle into what's the new normal. We planned for what life would be like. I hate to say it, but what life would be like without my dad. And now you're going, OK, what does life look like with him, which is amazing, but it didn't look like it was before. He could never go back to work. He was a stockbroker.

Nobody was going to trust him, unfortunately, with money after a brain cancer diagnosis. So he was never able to go back to work. He was forced into retirement, but not really at that point, able to travel a lot just based on not wanting to take him away from his care team or anything like that. We traveled a little bit, but it was still very restrictive. And then unfortunately he cognitively started to decline after about that kind of four-year window, even five-year window, he started to mentally decline. So that was sort of the next phase in it.

Bri (18:57)
You kind of had prepared for what would life look like without dad. But then you get to this point where it's like, wait a second, what is life going to look like with him still around? I don't know why, but the word relief is coming to mind of like, wow, we still might have him. What was it that you experienced in that shift?

Caroline Lenher (19:15)
I think it was each time those scans came back clear. It's almost like a deeper like okay you're farther away from that ninety five percent and that's more of what I remember. I don't remember there being kind of this one moment where we were like now we've got this. It just, it happened over time.

One of the things I will say though was the impact on him, and I won't speak for him, but I do remember him really struggling with you move forward with this diagnosis and he did start to plan for what would happen with my mom after he was gone. So he did plan for what would happen when he was no longer with us. And I do know for him, that was a big shift when all of a sudden you are still there. It's a big mental shift. And again, I won’t speak for what he personally went through, but I do remember talking with him about that struggle of, okay now what? I'm not going back to work. I'm not retiring. I’m not physically able to do all of the active things I used to do. So now what?

Bri (20:17)
Mm-hmm.

Caroline Lenher (20:19)
It's an important element to think about in supporting that person when they have that opportunity for a longer life.

Bri (20:25)
And so we're kind of, around the five-year mark, four-year mark, and you previously shared that he survived 13 years.

Caroline Lenher (20:34)
Yes.

Bri (20:34)
So what happens in that window between five years and 13 years?

Caroline Lenher (20:39)
We started to see a cognitive decline, a lot of memory things. It was almost, I don’t want to say really physical, but because as the mind kind of starts to diminish, you do have the physical elements that go with that.

I've known people, I've watched people go through Alzheimer's and dementia and everything he went through just felt adjacent to that, but not any of those things because it was a slow decline. It was certain things, but not other things. He would be okay in one aspect where you wouldn't expect him to be okay, but not in another. So it was like this window of slowly, it sounds so awful when you say it, but taking control of his life and helping him manage his own life.

So there was that transition as he kind of cognitively declined to the point that my mom wasn't really able to leave him alone at all for fear that he would fall or he was at that point too where we were worried that he would leave the house and not know where he was, which is very Alzheimer's-esque.

So there were all of these elements as time went on that ultimately led us to have to move him into an assisted living because it was so much on my mom and all she wanted to do was take care of him, but you reach a point where it wasn't safe for her or him. So we did ultimately move him into assisted living and I feel like that was around 2013.

Bri (22:04)
And where is your headspace as you're watching this decline?

Caroline Lenher (22:08)
It happened really slowly. It was depressing. It was hard to see. As I mentioned, when we first started talking, he was my go-to. And suddenly I didn't have that go-to for so many things that happened in my life. Like during that window, I moved from New York back to LA once we knew he was stable. Then I went through a lot of things with work. I got laid off very suddenly. Like there were things that happened that I would have gone to him to talk through. And then you can't.

And I remember kind of pivotal moments after I was laid off and I was moving into a same career but different, completely different area of focus, and wanting to call him and talk to him like, what do you think about this? And, you know, how would you approach this? I want to renegotiate salary because it's a different area. All those things and realizing that I don't have that with him. And I did call him to, you know, have that kind of experience with him. And he just said, “oh you'll make good choices. You've got this."

So he was still trying to be encouraging. But yeah, so there is that sadness and you hear people talk about it with Alzheimer's specifically. It's that slow goodbye. That's what it felt like as we progressed through it and that was really hard.

Bri (23:24)
When and how did grief show up for you?

Caroline Lenher (23:28)
Interestingly, at different moments. Like there were those moments when you realize if you call him, you're not going to have the same dialogue. There were moments like where I kind of grieved along the way and then you stop and you go, no, but he's still and there were a number of moments like that.

When I started my business in 2017, he would have been the first one that I would have talked through. What am I doing? Is this a good decision? This is what I want to do. And at that point, he, he wasn't there enough to have those conversations. So there was grieving along the way.

To be perfectly honest, they're still grieving now. I mean I lost him six years ago and you know you still have these moments of oh my gosh, I just want to call dad.

So that slow goodbye provides a lot of moments to think and to grieve but it's it's an ongoing process I've learned.

Bri (24:16)
What moments remind you of him most?

Caroline Lenher (24:18)
Oh, so many. One of my favorite things to think about with him is when I moved to California the first time back in 98, he was not happy about it. From Rhode Island to California, what are you doing? And he never wanted to come out. And he finally came out to visit and I took him to do my favorite things. I took him on a hike in the mountains, the Santa Monica Mountains that are 10 minutes from my home. And we walked along the beach and he loved the beach. We grew up going out to Martha's Vineyard. So we were always on the beach. So water was a big thing. And as we're walking down the beach, he and I just talking, this flock of, I can't remember what they were. Little tiny birds. I want to say sandpipers, but I can't remember what they were. They were all of a sudden diving in and out of the waves and playing with them. And my dad and I just stood there and watched it and we were talking and as we walked away, he under his breath, Bri, he goes, I get it. I know why you moved here. It makes sense. And he said it just like that, totally resigned.

I live only two blocks from the beach. So every time I'm down there, it's, it's… For me, it's a connection with him and on key days like his birthday, the day that we lost him, which is actually right before my birthday, I will always go walk on the beach and, just have that moment with him and me. And I do take my dog and she's not allowed on the beach. So the first year I did that, I actually got ticketed.

I started to laugh because I'm like, dad would have just, he would have laughed so hard and said, of course you got ticketed. But there are those moments like that. And I also think about the business that I've built and, you know, you and I talk about advocacy all the time. I think you would be proud of those things. And each time I have a touch point with the brain tumor community, of course, it's going to make me think of him and the impact that he's had on me in life, but also now in this space.

Bri (26:05)
You have taken all of this and become an advocate yourself. And I'd love for you to share with listeners a bit more about how this has impacted you and the work that you're doing today.

Caroline Lenher (26:20)
As I mentioned with the protocol, it was very important to him to give back. And I've always been a caretaker. I've always been somebody that people always came to. And so that's always been core to who I am. And when this happened with dad, I always said to myself, this is happening for a reason. I don't know what it is, but there is a bigger something for me as to why this is happening. And it wasn't until a few years down the road, kind of in that window that we talked about where he started to decline and I was introduced to or connected to the American Brain Tumor Association and learned about their mentoring program.

And it was as if a light bulb went on. And I was like, oh wait, I have this experience and I can support other people in the moment when they receive this diagnosis. Oftentimes you don't, you have never heard of it. You don't know what to do. Everything's confusing. It's happening so fast. And the worst part about it, when my dad was diagnosed, is nobody around me had ever heard of it. So there was no support for his specific cancer.

And so the idea of being able to support others as they went through this was really important to me. And my friend Scott actually said something to me when I called him when my dad was first diagnosed and he had lost his mom to cancer a few years prior.

And the words that he said to me have stayed with me forever. And I know they're going to resonate because others have heard them now quite often. But what he said to me is, “this is an awful club to be part of. And I'm sorry that you've joined it. But I think it's important for you to know that part of joining a club like this is you've got other people that have walked here before you. And we're now here to support you.”

And that always stayed with me. And I was like, I have to do something with that. And that's where the mentorship, the advocacy, people reach out to me a lot on LinkedIn or people that I used to work with 25 years ago that remember my dad's story, they will be touched by GBM and they will reach out to me. So it's this drive in me to try to make even something slightly easier for somebody that's going through this. And if I can be an ear for somebody, if I can support them in even the smallest way as they navigate this crazy path that this becomes and happens so quickly, I wanna be able to give back in that way. And I do believe when I say that I tried to figure out why this happened or what it meant for me and I think this has been a big part of it.

Bri (28:41)
Yeah. How has all of this rewired your mind?

Caroline Lenher (28:44)
I've thought about that question so much and I struggle because I come back with so many different answers to it and I think what it has done is it's opened me up, Bri, in a different way and I think it's a few things.

One, you're faced with something like this which you never expect to be faced with and you're tested for what you can handle. And when my dad was diagnosed, my life could not have been busier if I hadn't added another job. So you just realize in the moment what you can handle and it changes the way you approach everything.

So, you know, again, it was almost 20 years ago. So it's hard to think about kind of that initial impact. But when I think about it over time, it has allowed me to be realistic is the word that comes to mind, just approach things from a much more balanced place. And I will say it is also driven home in me all of the cancers, all of the situations where people are faced with diagnoses and there's just not enough information and that's the advocacy part and that has really what used to become something, yes I will donate money, I will go do walks, I will do these things. It is now a drive in me to raise awareness, to raise money, to help find a cure, better treatments, better options, more options for people. So those are the two things that really come up to me for how my brain has been rewired and how I've kind of rewired my world around this.

Bri (30:21)
I love that extension of rewiring the world, not just your own mind. It's a good challenge for all of us that yes, go inward and reflect inward, but also how do you then translate that to have an impact? And sometimes the impact is something like this. Sharing your story is a really great way to have an impact.

Other people, their impact is financial, other people, their impact is with their time volunteering in organizations. I mean, there's no comparison to the level of impact.

It is still considered a rare disease. The numbers just aren't there yet for it to get out of that category. Unfor…

Well, unfortunately in the sense of funding and support and backing and finding answers, but fortunately in the sense that it's a rare disease, so it's not impacting a lot of people although it's growing.

But the reality is that we're at the point where every type of impact, no matter the size, is needed so that, collectively, we can shout from the rooftop about this and get attention on it and, and make some changes for those who come after us.

Caroline Lenher (31:29)
100% and Bri something as you were talking through that that kept coming up for me is we had to have for 13 years and that was a long journey, but for most people this happens so fast and it is one thing after another. This is a horrible disease to encounter for most individuals and the fact that they go through this and it changes every day every week for a new challenge that they face, it just it makes you want to scream, to your point, at the of the mountains and go, we have to be able to do better. We have to figure this out. We have to fund. We have to fund the research, the clinical trials to figure out how to have a better approach to treat this as well as, as I mentioned, hopefully cure it.

Bri (32:15)
Yeah, absolutely. Well, on that note, if people want to link arms with you and make an impact and advocate alongside you, where can they find you? How can they get in touch?


Caroline Lenher (32:26)
I think the best way to reach me is oddly through my LinkedIn. And you can find that just by using my name, which is Caroline spelled Caroline. So C-A-R-O-L-I-N-E. And my last name is spelled L-E-N-H-E-R. And that's probably the fastest way. There's not, no other ones of us on LinkedIn that I know of.

Bri (32:46)
Hahaha

Caroline Lenher (32:47)
That's the fastest way. Just message me through there. But if you want to find out more information specifically about this journey for me, I have my cause-related program called Coaching for Causes that Bri is also one of our amazing coaches in and that talks a little bit more about my cause-related work as well as our journey. So that is easy to find just coachingforcauses.com with for spelled out.

Bri (33:12)
I will include both of those, the link to your LinkedIn profile, not to be redundant there, and then also the link to the website as well in the show notes so people can find it very easily.

Caroline, thank you so much for joining. I really, really appreciate it so much.

Caroline Lenher (33:30)
My gosh, thank you so much for having me and letting me share and talk about my dad. I feel like I don't get to talk about him enough now. So it's been a beautiful moment and I appreciate all you're doing for this podcast and sharing our stories with the world and getting the word out. So thank you for that.

Bri (33:52)
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/podcast. If you or someone you know has a brain tumor story to share, I'd love to hear from you. Visit rewired-minds.com/guest 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.

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