Ep 27 | June 3, 2026 | 29 mins

In this heartfelt conversation, Jake Bohnert shares his journey through a brain tumor diagnosis, surgery, recurrence, and the profound lessons learned about faith, strength, and resilience. Discover how he navigated uncertainty, redefined strength, and found peace amidst chaos.

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

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Connect with Jake Bohnert
Facebook: https://www.facebook.com/jacob.bohnert.370/
Instagram: https://www.instagram.com/jake.bohnert
Email: jake-bohnert@outlook.com

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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 (00:29)
Today's guest is Jake Bonhert, who is a subependymoma survivor. He was originally diagnosed in February of 2023 at 30 years old and had a recurrence two years later. He continues to face new physical, cognitive, and emotional challenges while also recognizing his journey is not over. In many ways, it's just the beginning of a garden full of wildflowers, as he calls it. Thanks for joining me, Jake.

Jake Bohnert (00:54)
Hi, Bri, thanks for having me.

Bri (00:56)
How are you feeling today?

Jake Bohnert (00:57)
I am feeling really good. Some days are good, some days are not, but today is one of the good days.

Bri (01:02)
Oh, that's great to hear. That's great to hear. Let’s dive right in and rewind time prior to 2023. What did life look like for you before that moment of impact?

Jake Bohnert (01:15)
Life was an adventure. I growing up was kind of a dream chaser all over the place, never really knew what I wanted to do. Early twenties, I was a flight attendant and then transitioned into working the nine to five, but then I had a bartending job and I was always chasing that next big thing. Life was just chaos and it just never stopped. February of 2023 really just… it changed it. It was like this immediate, hey, it's time to stop. The tumor was what changed that.

Bri (01:46)
What was fun about the chaos?

Jake Bohnert (01:48)
It was always something different. I worked in hospitality too. I worked in the food industry. It was never normal shifts. I could travel when I wanted to go see my friends during the week and it was abnormal. And I loved the abnormal of life.

I grew up having a different perspective than most. I grew up in the church. I learned the Bible and you see things in a certain way, but then you kind of challenged the normal. I grew up being taught that this is the way things should be, but then you kind of challenge that and you want to do things this way. So I didn't do the normal college where you get the four year degree. And instead I wanted to just get a quick certificate and go fly and see what was in the world. And it was fun. It was an adventure. And I got to live a little bit more than most people did at that age.

Bri (02:34)
I'm a bit of an adventurer myself So I feel like I've got a kindred spirit with me here. What was one of your most memorable trips?

Jake Bohnert (02:42)
I will definitely say El Salvador. When I was in ministry, shortly after high school, I was studying at Liberty University and this was about 2014. I went to El Salvador, just like a quick random trip and ended up being like a life-changing trip.

Within that year, I had gone on three different mission trips. And then the year after that, I went to back to El Salvador by myself. I didn't know any Spanish. So I had to hire a translator and it was really fun. It really pushed me outside of my comfort zone. It was a challenge to really trust the process.

El Salvador was beautiful though, just being there, learning the culture, the food was delicious, but it was really just understanding that there's so much more out there than what we see right beside us.

Bri (03:32)
What a precursor for trusting the process.

Jake Bohnert (03:34)
Absolutely. Yeah, definitely led up to something a lot bigger. Looking back, I know now that there were side effects. I was having nosebleeds that were very abnormal to the point where I would have to pull over on the side of the road and tend to them.

I wasn't able to keep much food down. I was just very sick to my stomach, abnormal headaches and migraines, but I just thought it was just the seasonal changes. I live in Missouri and if you are from Missouri or know anyone that lives in Missouri, you know that this is just a Midwest thing. It can be really hot and one day and the next day it's snowing. So I didn't think anything of it.

February 15th, I had taken a day off of work to just kind of catch up, spent the day cleaning, and my back was just in a lot of discomfort. I was just hurting really bad. And the week before that, I had done a workout with my personal trainer, but I was in a hurry that morning, so I sped through it. I was doing deadlifts. I should not have sped through it because deadlifts are the one workout you don't speed through. I learned my lesson, I also realized, after the fact, that there was more going on than just pulled muscles.

On the 15th, I was in excruciating back pain. I had been sitting at my desk, journaling about challenging the end of life. What does end of life look like? What are the things that actually matter when you do get to that stage of life? And I was worrying about, you know, I didn't have my four year degree and I never got to really be successful in other people's eyes things that truly didn't matter. I got done journaling, then I crawled to my bed. I was in that much pain and I went to sleep.

The next day I woke up and I had a tattoo appointment with my artist to get a whole sleeve done. It was about a 45 minute drive and I remember waking up that morning, but I don't remember driving there. I don't remember much of the actual appointment and it was like an eight hour appointment. I remember like bits and pieces of being on the table and going outside and just getting fresh air, but I don't remember like conversations or interactions with the artist and I had a cousin there and it was just kind of weird. I remember being home that night, but not getting home.

Bri (05:35)
Yeah, and I think we've all had that experience of our mind is racing or distracted and we know we got in the car and went somewhere, but we don't remember the actual path of driving. But this sounds so much more significant than that.

Jake Bohnert (05:47)
Correct. And it's almost like a weird like hallucination. It was like a significant amount of time to where you're really alert and aware of where you're going. That next day, had a doctor's appointment to kind of get my back looked at. He’s been my doctor for a pretty long time. My cousin is actually my nurse as well. As they came into the room to tell me that they're going to send me to physical therapy, I pass out into their arms. And this is kind of where I started getting really sick and like not really feeling well.

So they put me in a wheelchair, take me to the ER. I remember being in the bed in the ER and my hands and my feet were blue. I just remember being very cold. And then the next thing I know, they're sending me home and that's it. The next thing I remember, it was Saturday was brushing my teeth, kind of moving back and forth.

Bri (06:37)
My jaw is on the floor. Your hands and feet are blue and they sent you home or other things happened. And the next thing you remember you were home.

Jake Bohnert (06:44)
Yeah, so done stuff.

Bri (06:46)
Okay, I was like, whoa, whoa, whoa, whoa, how in the world did they send you home if your hands and feet are blue and you're passing out?

Jake Bohnert (06:52)
I didn't remember anything because I was so out of sorts, but they had done testing, they had done scans, they had given me medication like muscle relaxers. I had my mom come and pick me up from the hospital and I even had someone with me at the hospital. So I was in great hands there at the hospital, but I just don't remember any of it.

It was kind of the same with the day before at the tattoo shop. I was just so out of sorts that I was just like a warm body there. Nothing was really registering in my head.

On Saturday the 18th, my cousin came back over to my house and from what I've been told, I couldn't find anything to drink in the house. I could not find my mom and she was in the house. I was outside looking for her. So when I went to brush my teeth, I was kind of swaying back and forth and I could not balance correctly.

So they knew something wasn't right, but I couldn't really explain what was off. That's when they took me to a larger hospital. That's kind of when I started remembering stuff. They checked me in pretty quickly to a room within, I believe it was like an hour and a half to two hours of doing some testing, they let me know that they had found a mass on my brain.

Bri (08:07)
And there's the words we've all heard. We found a mass.

Jake Bohnert (08:10)
It was scary. I remember being there laying on the bed. The doctor was by my left foot. My mom, my aunt, my cousin were on the right. There was a couple nurses on my left. Then I was gone for a couple hours. So by the time I realized what was going on again, my whole family was in the waiting room.

During this time, the COVID restrictions were kind of still into play, so they were coming in two at a time just to be with me in case I was to come alert again.

I just remember waking up and crying because I was scared, like I didn't really know what was going on. They told me, but when you're in that spot, those words truly didn't mean anything.

They said your options are to either go to St. Louis University or Washington University in St. Louis. So we chose to go to St. Louis University. They were going to take me by ambulance And then that is when they basically prepared us for the worst. The doctor said, we don't know what to expect. We don’t really handle these kind of cases here.

And that's when I remember handing over passwords, important information, handing over my phone to my mom and my aunt, really just prepping for the worst, not knowing what was going to happen.

It was absolutely terrifying. There was so much I didn't know, the doctor didn't know, like really truly nobody knows.

Bri (09:29)
You’re now mentioning you're going to a third hospital. And so it's different environment, different setting, transporting, uncertainty on top of logistics, on top of what's happening. There's a mass, but a mass can mean a lot of different things. How are you processing at this time? Or are you?

Jake Bohnert (09:50)
I don't think I was. I think I was still just stuck in the, I just want to get back to my normal. I had only been six months into a new position. I'd been with the company for a little bit, but I had just been promoted and I was like, I just need to get back to work. That's all I could worry about. I wanted to get to work. I wanted to get back to normal.

I had a six-year-old dog at home, a boxer, and literally my soul dog. I couldn't stop thinking about him. What's he gonna do during this time? I just wanted to get back to normal. But little did I know, normal will never be normal again. And that's what part of the journey had truly become was learning that the normal I knew, even on February 15th, will never be the normal that I know again. So processing that started on the 18th, laying in the hospital bed was what's next? Where are we going? What's the next process? And you really just come to this moment of acceptance of I can't change anything right now. I just have to accept that I'm in good hands and that they're going to fix this. Because I'm awake, but I really don't know what's going on.

I would be in and out of like that hallucination state. So by the time I got to St. Louis, I was put into a room before my family got there. I have a pretty large family and we are all very close. My mom is one of six siblings and it is a very fun time to be around my family. To be surrounded by so much love and support is truly what got me through

It was just that weird factor of being in and out, just laying there so cold not knowing what's going on. You're just sitting there, you're staring and can't talk about anything because you're not in the right mindset.

Bri (11:28)
And at what point do you start having more consistent memories and fewer and fewer hallucinations?

Jake Bohnert (11:35)
It probably came about a week after my surgery. I had my diagnosis on the 18th. They did my brain surgery on the 21st. And I would say probably by the beginning of March is really when I started to notice a difference.

I was really present again. You're kind of weaning off the medicine and you're not so tired. You’re kind of getting your energy back. I was able to be around family and go to family events and have dinners and be present again.

Bri (12:05)
And you mentioned you grew up in a religious family and you did missions and things like that. What role did your faith play in all of this?

Jake Bohnert (12:17)
It was a huge factor. Sorry. It chokes me up immediately. Just thinking about it.

Bri (12:22)
Nothing to be sorry about.

Jake Bohnert (12:23)
It is the one thing that got me through. My family was outstanding support. I had friends with me every day at the hospital, friends that even came and stayed the night. I had two friends that even came and did a spa night, but my faith and my relationship with Christ was truly the one thing that I held on to the strongest.

I think at some point in our lives, we all go through a time where we have to really challenge our relationship with Christ and really figure it out for ourselves. I went through that in my early twenties of like, well, maybe borderline, I don't know where I stand. And then when I got to this point of my life in February of 2023, when I laid in that hospital bed and that was the only thing I had to hang on to. It wasn't the four year degree, it wasn’t any of the memories, wasn't anything that I had been successful in, it wasn't anything I had achieved or I didn't achieve. It was how good I was to people. It was the impact I've made on people's lives and truly how good of a person that I have lived my life to be.

The day of surgery that morning, my family came into the room and they all made a circle and we prayed. And then after we got done praying, the nurse came in and she was like we are going to take Jake and his mom and dad into the next phase basically to prep him for surgery. And I said, before we do that, I am going to ask that everyone leaves the room. I just needed a couple minutes.

And at this time, there's a song that I played and it was talking about the only thing that we need is Jesus. I played that song and I just cried. And at that moment, that was truly the only thing I needed was just that remembrance that no matter where I'm at, he's meeting me. No matter what decisions, no matter how hard my life has been or what bad stuff I've done. It's all okay. I truly came to peace with literally everything in my life at that moment. And it was the scariest and hardest thing, but it was something that I needed to do.

And so I finished and I was like, all right, so I'm ready. They took me down to the surgery prep room. And that was really the last thing I remember,

Bri (14:30)
I’ve had so many conversations with so many people and those moments before surgery seem to be, for many people, very tumultuous and scary and nerve wracking and filled with uncertainty. And I'm hearing those same things with you, but I'm also hearing this huge aspect of, I mean, you said earlier, acceptance.

Jake Bohnert (14:56)
Yeah, there were so many emotions. I was calm because when I think back to the 15th that night that I was in so much back pain, I had to crawl to bed after I was journaling about how unhappy I was, like if end of life was to come because I didn't have a four-year degree or I didn't achieve this or I didn't achieve that.

Less than a week later and none of that mattered has really been so beneficial to where I'm at now in life to know that all of that happened in a week like wow talk about processing so many different emotions on top of a brain tumor yeah.

Bri (15:30)
Well and not to mention you're going into a surgery that you literally may not come out of. You may be facing your own death to have that calmness and peace and complete opposite from where you were the week before. It's quite a transformation.

Jake Bohnert (15:46)
Yeah, it truly was.

Bri (15:48)
So you had surgery. Umm, you had some complications.

Jake Bohnert (15:52)
I came home on Saturday the 25th. Thought I was doing really good. I had gained all my mobility back, which was pretty impressive. And then I had went back for my two week follow up to get my stitches looked at. And I was actually released kind of go back to a little bit of normal, not work yet, but I went back home and it was not even a week later, I started getting sick.

I knew something wasn't right, but it's hard for me, it was hard for me at that time to say anything just because after you get some kind of diagnosis, everything scares you. Whether it's a small bump, small pain. I mean, you just kind of get nervous at anything and everything. So I didn't think too much of it. As the week went on, I noticed I was getting very sick, lightheaded, headaches, very sensitive to everything. So we made a doctor's appointment. I went to the doctor and they did some testing and they found fluid behind my eyes and they knew that it was time to go back and get checked out.

So went to the ER. ER immediately sent me back to St. Louis by ambulance. I think it was March 13th, I was then admitted for a lumbar spinal tap, which was not comfortable.

Bri (17:13)
I can't imagine that it would be.

Jake Bohnert (17:16)
No.

Bri (17:16)
If I'm remembering the dates correctly, this is less than a month from when everything started, correct?

Jake (17:22)
Correct. Yeah. So all of this still happening within a month. When they did the surgery, they pulled the muscle apart and when the muscle tissue was kind of healing, it did not heal right and therefore the fluid wasn't able to drain. The options were to do the surgery again or to do the lumbar spinal drain and I would have to lay flat on my back for 10 days.

I of course was not gonna go through the surgery again because I was absolutely terrified of the pain that I had already just gone through less than a month before. The night of the 13th, I believe they attempted the first spinal lumbar drain to insert it. And it was a failed process. It was excruciating. I was given fentanyl and it was like not even taking the pain away.

I asked that they stop. I was able to rest. The next morning, they came in, did it again. That one was more successful than the first one. And then from there, I had to lay flat. This ended up being eight days. every hour they would come in and drain a certain amount of liquid off of my spine. After they did that, it would typically make me sick.

It was a very long process. I was in and out of feeling good, not feeling good, uncomfortable. I also lost a lot of muscle at that time just not being able to move for about two months.

Bri (18:50)
How are you feeling about yourself through all of this?

Jake Bohnert (18:54)
Tough. At that point then, it was a very lonely journey. It's now gotten a little bit better. I've worked through a lot of it. I've done a lot of therapy.

At that in the journey, everyone had to go back to work because nobody can take off for eight or nine days in a row. What are they going to do? Just sit there with me?

It was tough. It was really hard. It was very lonely. I will say that was the hardest part was just sitting there.

The second time being in the hospital is really what challenged me emotionally. It really is what changed me. Going through the surgery and trusting in my faith and my relationship with Christ was a great experience and really eye-opening.

When you lay in a hospital bed for nine days, just praying that this is what is gonna work and that you don't have to go through that surgery again. Also not having the results back if that tumor is benign or not. It was hard. It was a very lonely journey.

Bri (19:49)
One of the things that you shared ahead of our conversation is that this journey has changed how you define strength. And I'd love if you can share a little bit about that.

Jake Bohnert (20:00)
I would define it a little bit different than I used to. Before I would be like, I am gonna work a nine to five and then I'm gonna go work my bartending job in the evening and I'm gonna go hang out with friends and then I'm gonna be busy on the weekends and that's what I would consider strength. I'm gonna be surrounded with all these people. It's gonna over quality over quality.

Now that I've gone through what I've gone through, strength is truly building something for yourself and surrounding yourself with people that are going to lift you up and love you like you should be loved and making sure that you're making the decisions for yourself.

It looks so different. If I need to go home and sit on the couch for an evening, that's okay. I don't work two jobs anymore. I work strictly Monday through Friday, nine to five. I love what I do. I work with cancer patients and that is my strength. I get to give back every single day. It's truly changed me.

Bri (20:56)
It's incredible everything that you've shared about what you've learned because we haven't even gotten to your recurrence yet. So how did you learn about the recurrence?

Jake Bohnert (21:04)
I'd actually run out of contacts and I was tired of wearing my glasses. In January of 2024. I went to a new eye doctor as I had moved to St. Louis with my partner. She said, think we need to do some additional testing. I think your vision has changed.

And I was like, well, you're the professional. I'm not going to challenge you, but I don't know that it has. My vision has actually never changed. And I've always seen the same doctor since I was a kid.

She said, well, let's just do it to be safe.

Really trusted her. Especially with my medical history, I was like, well, I'm not going to challenge anybody. She did some extra screening and she found that there's extra blood flow to the back of my eye. She didn't diagnose me at that point. The only thing she could tell me was that it's strange that it's sending blood to the back of your eye.

I'm not concerned. I'm just like, let's just go get it checked out.

Sent me to a professional. The Retina Institute up here in St. Louis. They were pretty urgent with the appointment and they found the tumor behind my right eye. I don't know the name of it, but it's a benign tumor. They then sent me for additional screening to just check out If I have genetic diseases that could potentially cause tumors that'll just pop up. None of that came back positive, thankfully, but it’s not great. I do have side effects from the eye tumor. I do have to go quite often for eye exams, follow ups, additional screenings. We're now at about a year and a half from that finding. So far, no surgery If it does progress, possibly surgery. Hope that doesn't happen, but it does cause a lot of discomfort.

Bri (22:43)
So this is something completely separate from your subependymoma…

Jake Bohnert (22:48)
It is.

Bri (22:49)
And it sounds like they're mostly handling this with a wait and watch approach…

Jake (22:53)
Correct.

Bri (22:53)
How's that sitting with you?

Jake Bohnert (22:55)
It's a little scary. I think the biggest thing that scares me is okay, what's this appointment going to bring? You have doctor's appointment fears, and mine comes from that hospital visit on the 18th of February, 2023 when you walk in and I don't get to go home for about a week and a half after a brain surgery, after I've been through excruciating pain and you continuously go through those things.

Not only did that affect me physically and mentally and challenge me spiritually, but it's also financially. You don't just show up for a doctor's appointment to just get the doctor's appointment done. You sit and you process every little detail.

Now before I go to a doctor's appointment, I'll make sure the house is clean and I'll make sure that everything is straightened up. If something was to happen, this is where you can find this. And so I think that comes into play. I do get nervous because what happens if it has gotten worse?

Bri (23:47)
Yeah, it throws you back in that place of uncertainty every time there's another appointment.

Jake Bohnert (23:52)
It does, it does, and it can be very scary. It does bring up a little bit of trauma.

Bri (23:56)
Yeah, absolutely.

Just a little behind the scenes for listeners. So if you're interested in being a guest, one of the first things I have you do is submit an interest form. And one of the things, Jake, that you wrote in your interest form, I actually want to just quote it directly.

Jake Bohnert (24:09)
Yeah, absolutely.

Bri (24:10)
You say, “each phase brought a different kind of grief, including grief for who I was before, for the sense of certainty I once had, and for the life I expected to return to.”

What does grief look like for you today?

Jake Bohnert (24:23)
To be very transparent, it's really hard. Every year has brought something different.

Year one was the physical. Year two was the financial. As I approach year three, I truly mentally am grieving so many different things. I physically am not the same. I sexually am not the same. Thankfully, my partner is extremely loving and caring, but it has affected some aspects of our relationship that thankfully we, we do work through. It has been really hard this past year because I have grieved friendships. I've had to disconnect from some people just because I either can't keep up with the lifestyle or who I was is not who I am now and I can't put on that face anymore.

I think it's okay to accept that. We don't have to be someone we're not. Grief can look a little bit different and it can be different every day too.

Bri (25:12)
What has all of this taught you about yourself?

Jake Bohnert (25:14)
The younger Jake used to be such a people pleaser from as young as I can remember. It used to be about everyone else. I would exhaust myself until I literally would just have to mentally check out for days.

It has taught me that it's okay to put myself first.

It's been a really good journey. It's been mentally hard because it's made me really do some digging like therapy wise and bring up trauma I don't necessarily want to. I mean, who does, right? But it's helped me become such a better person. I love who I've become and I never thought I would say that.

Bri (25:49)
What do you love most about who you've become?

Jake Bohnert (25:51)
I remember 10 years ago I went on a trip to LA with a friend and by the end of the trip she was so annoyed because I was so stuck on myself. I would always take selfies and it was always about me.

Then it quickly became about everyone else and I would do everything for everyone else and now it's just finding that balance of how can I just be in the moment without having to people please and just be so present and just enjoy it? I've always had to chase that next moment and I don't have to do that anymore. Now it's okay to just be here, be present, and just enjoy where we're at. And that has been so good to feel. I'm thankful. I’m very thankful. The last three years have been hell and back, but I wouldn't change it.

Bri (26:36)
What would you say to the old Jake?

Jake Bohnert (26:38)
Just keep going. I struggled greatly with my mental health back then. I was pretty headstrong. I would just say keep going. It gets better. It's gonna be hard, but it's gonna get better.

Bri (26:49)
I absolutely agree with that sentiment. It's hard to genuinely believe and internalize it in the darkest of moments and the hardest of times. And also, I too have seen it get better. And so I know that there is truth to it, even if I don't feel it inside sometimes.

How has all of this rewired your mind?

Jake Bohnert (27:06)
That's a really good question. I would say it has helped me really understand that everybody needs something different. Whether that's on a personal level, romantic level, professional level, whether it's my team at work or it's my partner or it's my family or it's someone that you see at the store or it's an unhoused individual standing on the corner. We all need kindness and we all need something different than the other one needs. And it's okay to just stop, take a moment, and just love that person.

Bri (27:37)
Ooh, I just got chills. Just love that person. That's a great way to wrap.

Jake, if listeners want to get in touch and build community with you and be in conversation with you, where can they find you?

Jake Bohnert (27:48)
I’m on social media. I'm on Facebook, Instagram. They can also email me. I would love to connect.

Bri (27:54)
Okay, awesome. I will include all of that in the show notes. Thank you very much, Jake, for making time, for sharing so vulnerably. So much wisdom and insight and lessons. So I appreciate that.

Jake Bohnert (28:08)
Absolutely. I appreciate it. This was good.

Bri (28:18)
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 (28:50)
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.