Ep 26 | May 27, 2026 | 26 mins

In this episode of Rewired Minds, Bri Salsman interviews Steve Donie, a meningioma survivor who shares his journey from diagnosis to recovery. Steve discusses his life before the diagnosis, the symptoms he experienced, and the emotional impact of receiving the news. He reflects on the changes in his career and personal life, the support systems that helped him cope, and how he found resilience in the face of adversity. Steve also shares the significance of a 3D printed model of his tumor and how he has created meaning from his experience, ultimately looking forward to new aspirations in life.

Bri will be participating in Coaching for Causes for another year. Each May, certified coaches from various fields donate our time for 1:1 coaching sessions. Clients make a donation to a selected cause in exchange for a session. This ensures that 100% of proceeds go directly to the nonprofit. I'm raising funds for Northwestern Medicine Malnati Brain Tumor Institute. The best part is that every coach chooses their own cause, so you can donate to another coach's cause and still coach with me or vice versa. Visit coachingforcauses.com for details.

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 Steve Donie
LinkedIn: https://linkedin.con/in/stevedonie

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)
Before we get into today's episode, I'm very proud to share that I'll be participating in Coaching for Causes for another year. Coaching for Causes is built on two core principles, being of service and making a difference. Each May, certified coaches like me from various fields donate our time for virtual and in-person one-on-one coaching sessions. Clients like you make a donation to a selected cause in exchange for a session. This ensures that 100% of proceeds go directly to the nonprofit.

I'm raising funds for Northwestern Medicine Malnati Brain Tumor Institute, where I've received all my treatment and care. The best part is that every coach chooses their own cause, so you can donate to another coach's cause and still coach with me or vice versa. I encourage you to go back and listen to episode 14 to hear Caroline Lehner's story. She's the founder of Coaching for Causes.

Also, visit coachingforcauses.com for details and to find your coach, make a donation and book your session.

Bri (01:28)
Today's guest is Steve Donie. He is a meningioma survivor and was originally diagnosed in 2023. Hi, Steve. Welcome to the show.

Steve Donie (01:37)
Hi, thanks for having me on.

Bri (01:38)
Yeah, I'm so glad that you are willing to share your story and we are already kindred spirits because as you know, of course, I too have a meningioma. So there’s already connection there. But I know you have a whole story even before the meningioma entered into your life. So what did life look like before you learned about the meningioma?

Steve Donie (02:00)
So 2023, how old was I? 57 years old. I was starting to think about maybe eventually retiring. I was a pretty successful software engineer. I'd been married for 30 plus years. I married my high… college sweetheart. We'd been married for that whole time, had two kids that we had raised to adulthood. One had gone through college, the other one still figuring himself out, but successful in his own way. Things were pretty good for us.

And then March of 2023, the company that I was working for ran into cashflow problems and they stopped being able to make payroll and then they collapsed and laid everybody off.

Bri (02:45)
Wow.

Steve Donie (02:46)
And, you know, that was upsetting, but I had been through many different jobs in my 30 plus years as a software engineer. And so I started looking for other work and the thing that was weird at that point was I couldn't seem to get motivated.

Bri (03:03)
How so?

Steve Donie (03:08)
Well, I’d get a job offer and it wasn't very interesting. I wasn’t looking very hard. Normally, it would take me a month or two to find a new job. And my job search started in March and it went into April and then May and then June and then July.

July was the first time that I had, looking back now, first symptom of the meningioma. I woke up in the morning and my whole day the day before was gone. Couldn't remember a dang thing. I didn't know what it was. Scared the heck out of me, but I didn't know what to do with it. I recreated my day by looking at my emails and my text messages and so on and so forth. And I sent myself an email about it. I don't think I told my wife about it. I didn't tell my doctor about it. I didn't know what it was.

Bri (03:53)
What made this different than just forgetfulness? Everybody's had moments where it's like, what'd you have for dinner last night? And it's like, well, what did I have for dinner? What made this different from something like that?

Steve Donie (04:03)
It was very comprehensive. The whole day was gone. I just didn't remember anything at all about that whole day, but I remembered things about the previous week, you know, the previous months and various other things. But just that day. And I was able to go through my day. I was able to unload the dishwasher. I remembered where silverware went. All those kinds of things. But it had a very different quality and it was just very, very scary. And I ended up keeping it to myself.

Bri (04:35)
And you mentioned this was like your first symptoms. So imagine there were additional things that you started noticing after this.

Steve Donie (04:42)
The only symptoms that I ended up having were these seizures. I ended up having three of these seizures, one in July, one in August, and then one in September. After the one in August, I did say, okay, this is serious. I should probably see my doctor.

And I went to see my regular doctor and he went, huh, that's weird. I don't know anything about that, but you know, you're taking atorvastatin, statins or a class of drug that they give you for cholesterol. When I was 51, I had a heart attack. So, I've taking heart attack reduction meds and anti-cholesterol and blood pressure stuff. So, he took me off of statins because apparently the statins can cause memory issues.

And then I had one, another one of these memory things in September and went back to see him and he was like, okay, well, it obviously wasn't the statin. And that's when he sent me in for an MRI. We got the MRI back and I had a very large meningioma. I tell people about the size of a mandarin orange is a good visual. 4.9 centimeters was the the largest dimension. It was a big one.

Bri (05:57)
And before this, did you know anyone who had a meningioma or a brain tumor of any kind?

Steve Donie (06:03)
No, no, never heard about it, did not know anything about it.

Bri (06:07)
So what was it like getting this news?

Steve Donie (06:09)
It's a shock. It's a huge shock.

First you don't know that there’s some that are cancerous and there's some that aren't. Okay. You learn that fairly quickly. They say this seems like it's probably the non-cancerous type, but within the meningioma type, there's three classes, okay, and some of those actually are cancerous. Huh. And you won't find out about that until maybe they take it out or do a biopsy? Great.

This is where some of the weird things that started happening that I just, I'm not a big believer in woo and stuff. I do know that there are things that happen that we can't explain. But my sister-in-law has friends who the medical industry And one of them, got me a referral to the chairman of the Department of Neurosurgery at Baylor College of Medicine.

And he said, oh yeah, I could totally do that surgery, but it'd be better if you talked to my other friend over here, my colleague, Dr. Patel. He specializes in meningioma. He does nothing but surgery and research on meningioma. And he's right in your backyard. I guess I'll go see him then.

And then it just gets like, wow, things start happening really fast.

Bri (07:19)
You've got this referral You also have a bit of a waiting period before you can get in to see him. What was going through your mind as you're sitting in this in-between space?

Steve Donie (07:28)
I'm two years past it now. It's, it's a little hard to remember exactly how I felt because I have done a lot of work to process all of my feelings and it's hard to remember exactly what I was feeling and going through at the time.

Bri (07:45)
What are some of the things that you've done to help process that you found beneficial?

Steve Donie (07:45)
This is going to get a little bit twisty, but you've heard me mention my wife several times already. I had my surgery in November of 2023. In January of 2024, two months after the surgery, our marriage, which had been struggling partially because of some of the things that had been going on during the summer when I was so unmotivated and various other things finally kind of got to where we just couldn't anymore and we separated.

That was not the first time we had separated. The first time had been five years before. And after that first separation, I found a group called the Mankind Project. The Mankind Project is a nationwide organization of men trying to be better men. I could go on and on about the mankind project. It's awesome. I have gotten a lot of support through my MKP circle. I sit with a group of men every other Thursday night and we talk about our feelings. That's the short answer for what is MKP and we dig deep. We have processes to look at why are you feeling that way and how could you work on that and maybe feel differently about it? And those men in that circle have been amazing in helping me get through this time as I'm going through brain tumor diagnosis and a divorce.

And then the third big change, I had been unemployed since March of 2023, all the way up to November. and then immediate recovery and then it's Thanksgiving and then it's Christmas and New Year's and here it is New Year's Day and I'm still unemployed and now I'm out of the house.

And my wife has been supporting me. I was taking unemployment and I needed a job today. It takes a while to find a software job. And so I didn't know what else to do. So I started a handyman company.

Bri (09:42)
That's a big pivot. How did you arrive at that decision?

Steve Donie (09:45)
Doing things with my hands and building things was always something that I've really enjoyed. You know, I'm the kind of guy that fixes stuff around my own house. That's just what I thought to do. And it turned out to be a really good thing for me. It's worked out very, very well. So big pivot.

Bri (10:01)
And that's something you shared with me ahead of our recording session today. You wrote, “a brain tumor diagnosis doesn't have to be the end of things. It can be a turning point.” What do you mean by a turning point?

Steve Donie (10:16)
I had to take all of this, all of this disruption that then the ripple effects led to – a change in career, a change in my relationship status.

My wife, she owns and operates a landscaping company and she kind of needed the house. So I let her have the house and I moved out and I had to pivot there. Just all these different things changed and I had to just roll with it.

One of the things in MKP that we do is you adopt an animal name is what we used to do. Nowadays we adopt an essence name.

My first animal name was Reliable Badger. It was five, six years ago and I wanted to be a more reliable partner to my wife. And so it was kind of a aspirational thing. When I did the guided visualization to find my animal spirit to guide me, that's what came up.

As I've gone through this process though, one of the things that we will do in our circles is process some feelings and at the end of a certain process, the person who was leading the process says, wow, I can see that you've changed, Steve. Does your name still fit? And I was like, no, it doesn't. I’m resilient badger is who I am.

Bri (11:31)
What made that feel more fitting?

Steve Donie (11:33)
The fact that I can handle the stuff that has been thrown at me. It would be very easy and completely understandable that, in the face of these kinds of challenges, that somebody could just shut down and go into a hole and just go, no, I can't. I can't do it anymore.

Bri (11:54)
It's absolutely true. It happens for sure.

Steve Donie (11:54)
For whatever reason, whether it was my upbringing, my family, my MKP brothers, whatever it was or combination of all those things, I've been able to be resilient and move on and find a different way of being. I'm proud of myself.

Bri (12:14)
What are you most proud of?

Steve Donie (12:15)
I'm most proud of being able to pivot on the, kind of on the career side. I went from a software engineer to handyman and people are like, well, that's quite a switch, And yeah, it is, it is. You know, my income ain't nearly what it was before. But, I'm doing okay. I'm doing good enough. Good enough.

I'm closing in on 60. It's, you're starting to think about retirement And I'm trying to just kind of stay even the best I can.

Bri (12:44)
What I hear in all of this is that good old saying making lemonade from lemons that you've been dealt or been handed. And not only does it seem that lemonade has been made, but that your lemonade is sweet lemonade, not that tart lemonade.

What would you want to say to your pre diagnosis self, if you were able to sit down and have a conversation of that version of you?

Steve Donie (13:10)
More life stuff. I did not think about what I wanted and ask for what I wanted enough. Not to be crummy about it, but I didn't take the time to do the things that I wanted for myself. And I think that was then a disservice to the people around me and kind of project that onto other people around me. I blame my kids. I blame my ex-wife. I couldn't do it because of them, instead of claiming, I wasn't able to ask for it.

Bri (13:40)
That's powerful. What's it like to say that out loud?

Steve Donie (13:43)
it feels good. I've said several times. I actually said it the other day to a client of mine. His wife does a lot of the telling me what kind of handyman stuff to do around the house. And he had some stuff to do. I was like, well, you need to stand up for yourself.

He kind of laughed and joked, I'm like, no, I'm serious. This is really important stuff here. Yeah, it is powerful.

Bri (14:06)
What do you want for yourself today?

Steve Donie (14:08)
I just moved. I'm really excited about that.

Right after the diagnosis, I said I separated my ex-wife. We ended up divorcing about eight months later. The friend of ours that let me move in with him and it was amazing, amazing. Best roommate ever. I had one bedroom and a shelf in the garage, and I wanted my own space. And so I just moved into my own space.

Bri (14:40)
Congratulations.

And I'm really, really excited about that. And I think I can stay here for a while. And I think there's going to be room for me to kind of grow here. And what I really want is I want to build a woodworking shop here so that I can go beyond just doing handyman stuff but also make custom furniture. I think that would be fun. Or do wooden artworks and stuff like that. I was always a very artistic person and I would love to do more of that kind of thing.

And then where we are is walking distance to downtown Austin. And we have been doing a lot of walking lately, and that's been really enjoyable. So looking forward to doing more of that.

Bri (15:26)
A little birdie told me that you have a necklace that has some significance to it.

Steve Donie (15:33)
Yes, right after my surgery, one of my MKP brothers forwarded me an article from Reddit that said, hey, do you have your MRI on a CD? You do? Okay, great. Then go get this piece of free open source software called Slicer and follow these steps. And when you're done, you're going to have what's called an STL file, which is a 3D model of your tumor. And you can send that tumor to a 3D printer and get a life-size replica of your tumor. So I have a 3D printed model of my tumor that I would wear as a necklace on some Mardi Gras beads. The first one that I did was printed in black. It kind of creepy.

Bri (16:20)
hahahaha

Steve Donie (16:22)
I wore it here and there only to certain kinds of events. It's the kind of thing you’ve got to wear it to places where you know there's going to be people that are not going to be completely freaked out by it.

But I wore it here and there to, to, to events like that. So one of the fun things that I do is I'm involved in the Austin Burning Man community and I heard that the artist who had designed more temples for the, the real Burning Man had designed and built a temple for Houston. And they were going to be burning it on November 9th, 2024, the one year anniversary of my surgery. And I was like, well, I guess I'm going to have to drive down to Houston and put my little necklace in the fire.

And then I got this weird idea. I really do like telling my story. It feels like a gift that I give to people. And this time I'm going to wear the necklace And if they ask about the necklace, I'm going to tell them the story. And then if they want, I'm going to give them a copy 3D print, a white one. And I had my friend that printed the first one print up four more of the tumor – one I kept for myself and three I ended up giving away.

The first one that I gave away, there's a interactive art exhibit called Meow Wolf. There's one in Houston and it had just opened. And people who go to Burning Man love Meow Wolf. Of course a bunch of Burning Man people were going down to Houston to see the temple burn, so we all went to Meow Wolf first. And at the end of touring through Meow Wolf, there's a bar restaurant and you wait for your friends to come through. I'd been waiting there wearing my necklace and this woman comes up to me and says, what's that? So I give her the whole story.

And about halfway through, I say, well, you look weird. Are you weird?

Bri (18:15)
Hahaha

Steve Donie (18:16)
And she says, yeah. So you know what Burning Man is? And she says, yeah. And I give her the story and she kind of leans into me and she says, I'm on the Temple Burn crew. We don't usually let plastic in the fire, but you come find me and I'll make sure your necklace gets in the fire.

Bri (18:32)
What are the chances that the right two people end up sitting in the right place at the exact moment for something like this to happen?

Steve Donie (18:40)
I know.

Bri (18:41)
That's incredible. This is really interesting. I've heard of people getting tattoos or naming their tumor or all these variety of creative ways to… I don't think most people would say that they're commemorating their tumor, but it's a way to maybe create some separation between them and their tumor so they can kind of feel it's not taking them over, but rather they can take over the tumor, so to speak. But I've never heard anyone say that they have a necklace of their tumor. This one is unique.

Steve Donie (19:14)
Yeah, thank you. Yeah.

Bri (19:15)
So what is your relationship with your diagnosis today? How would you describe it?

Steve Donie (19:20)
It's interesting. There's parts of me that acknowledge that it is now a huge part of my identity.

I work as a handyman now. When I get new clients, I just call it capital letters, The Story. They get the story, usually within the first day. Hi, I'm Steve. Here's my story. I used to be a software guy and then I had a brain tumor and then I got divorced and now I'm a handyman.

Bri (19:48)
I’m sure that captures a lot of people's attention. Whoa, whoa, whoa! How did that path happen?

Steve Donie (19:53)
I'm not just some guy that does handyman stuff. I run my own website. I've got a booking system set up. I actually show up on time. Those kinds of things, that's part of my identity too.

So there's part of it where being a meningioma survivor is a huge part of my identity. And there's part of me that goes, gosh, I really wish it wasn't.

Bri (20:18)
What's, what is the part of you that wishes that it wasn't?

Steve Donie (20:22)
Bri you're gonna make me cry. Part of me that wishes it wasn't. Like I said, I had a very good life. I had a career that I liked, I had colleagues that respected and admired me. I had a house and a marriage. I traveled a lot. I had visions for the future and knew kind of what that was going to look like. There's times I miss that.

I am very, very, very fortunate that I have been able to pivot. And I do have a lot of similar sorts of things. I do have a career. It's a different one. I have clients who say really, really nice things about me. I've got all five star reviews. My clients like me. They tell their friends about me.

I met a woman and we have been together now for over a year and we are both very, very happy together. The visions of what the future is going to look like is it's starting to become more clear and it's been a difficult couple of years.

Bri (21:25)
Well, I appreciate you being open about this part of it because I think this is a piece that we don't hear about often until we're past it. And that is that there is an aspect of this journey that involves grief of the life we were planning for, grief of what was to come or what could have come. And that's part of this pivot as well. Pivot sounds nice and fun and exciting, but there's a challenge to it too, because it does mean that there is a letting go aspect of it as well. How does that land with you?

Steve Donie (22:06)
I couldn't agree with you more. One of the physical, I'm going to call it a physical thing that I noticed after my surgery. If you've ever been at a party where you go into the party and you've been there for a while and there's people, maybe this is an old school party where there's people smoking inside and you don't notice. And then you go outside and all of a sudden you're like, oh my God, it was so smoky in there. I didn't notice how smoky it had gotten.

My emotions were like that. I had gotten emotionally flat and I attribute it to the tumor because after the surgery, all of a sudden, a lot of my emotions came back. I would be listening to a song.

There's a podcast that I listen to called We Can Do Hard Things. I've listened to their theme song hundreds of times. After the surgery, that theme song came on and I cried to their theme song. Why did I cry to the theme song for the first time after listening to it for hundreds of times? I don't know, but I did. Emotions come up, they're different now.

Bri (23:11)
Absolutely. How has all of this experience in totality rewired your mind?

Steve Donie (23:17)
it has given me a lot of belief in my ability to be resilient to see myself as somebody who can do things differently, try new things, do different stuff.

I picked software way back in high school. And kind of did the things that were expected all the way through my whole life.

To just go, you know I don't have to do those things. I can do things completely differently. To know that I can do that is pretty amazing.

Bri (23:48)
I tend to agree. That’s beautiful.

Thank you so much, Steve, for joining me and being so willing and open with your story. If listeners connected with you and want to learn more about your story, where can they find you?

Steve Donie (24:05)
Probably the best way is through my LinkedIn page. I'm the only Steve Donie out there, so it's linkedin.com/inSteveDonie, S-T-E-V-E D-O-N-I-E.

Bri (24:20)
And I will be sure to include that information in the show notes as well to make it easy for folks to make sure they're finding the right Steve. Thank you so much.

Steve Donie (24:29)
Thank you so much. This has been really an honor to be on here and I'm excited for you doing this. Hope it goes really, really well.

Bri (24:44)
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 (25:16)
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.