Ep 23 | May 6, 2026 | 29 mins

Deandra Mayer had been living with migraines since she was 13 years old, never imagining they were connected to something growing in her brain. A career in nursing led her to a doctor who finally ordered an MRI, and what followed was a five year gap, a lost referral, and a diagnosis that would change everything at 28 years old. When the first neurosurgeon told her she had five to eight years to live, it was her mother who refused to accept that answer and found someone who would operate. Today Deandra is cancer free, traveling to France and Greece, and building the future she always dreamed of.
Migraines since age 13 were never investigated until a physician she worked with suggested an MRI
A lesion was found in 2019 but deemed non-urgent, and a follow up referral was lost during COVID
Sharp pain behind her left eye occurring four days in a row finally brought her to the ER in May 2025
Diagnosed with a grade two astrocytoma at 28 years old on Friday the 13th
First neurosurgeon gave her five to eight years to live and said the tumor was inoperable
Her mother sought a second opinion at the Montreal Neurological Institute, which changed everything
Second neurosurgeon removed 99% of the tumor using an AI-powered handheld probe called Sentry
A second craniotomy in October removed the remaining 1%, leaving her cancer free
Now taking Voracidinib daily as part of a clinical trial with minimal side effects so far
Chose to pursue fertility preservation before starting long term medication
Positivity, a strong support system, and her "Team D" carried her through the hardest moments
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
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Connect with Deandra Mayer
Facebook: https://www.facebook.com/deandra.mayer
Instagram: @Deandra_K3lly

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.

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 (01:29)
Today’s guest is Deandra Mayer. Deandra was diagnosed with a grade two astrocytoma in June of 2025. At the time, she was 28 years old. And since she's had surgery, targeted therapy, and is participating in a clinical trial for voracitinib and an AI powered handheld probe called Sentry. Welcome, Deandra. Thanks for being willing to share about your experience.

Deandra Mayer (01:51)
Thank you so much for having me, Bri.

Bri (01:52)
So you've had a full, not even a year yet, and you've had a lot going on. And I know we're gonna get into quite a bit of it, but before we do, if you can rewind time, before June of 2025. What did life looked like for you?

Deandra Mayer (02:11)
Since I was 13 years old, I've dealt with migraines, often every two or so months. And it's just something that kind of came around my time of the month. And I never really thought much of it. I always thought it was more towards like hormones and so talked to my family doctor about it and she didn't really have any concerns. So I just went about my life. I entered college after graduating from high school and studied nursing. I ended up working as a physician's assistant

I was telling the physician that I was working for at the time about my migraines that I was still recurring every two months. And he had some concerns because I had never had an MRI taken. So he wrote me up a referral to get an MRI. And he said, you know, I'll give you this referral and you go about getting the MRI done, but then you'll have to go to your family doctor for results. So that's what I did.

Bri (03:13)
In some way kind of sounds like you fell into this a little bit. My first curiosity and wonderment is, what if you had chosen a different career? What if you worked in a different setting? How would this have gone differently? And of course, you can do the what ifs in all the different directions in these kinds of situations, right? These are answers that we'll never have.

These are the kinds of things that are so fascinating to me when I hear about different experiences and how people learn about these things is the different paths that get us to where we are.

What got you interested in nursing and being a physician's assistant?

Deandra Mayer (03:48)
So I was always growing up like a really caring person, someone that always loved to put others ahead of herself and taking care of people has always been a huge passion of mine. So I just naturally kind of wanted to pursue something that was involved in the medical field. I did first aid and I was a lifeguard as well growing up so that kind of led me to a path of discovering nursing. Yeah, it was always something that I wanted to do. I don't do it anymore, unfortunately. But I am definitely grateful for the time that I did spend in nursing and the path that it led me to.

Bri (04:29)
Not to jump ahead by any stretch of the imagination, but I imagine that it probably helped a lot to have some sort of foundation as you're coming into what would be your brain tumor diagnosis.

Deandra Mayer (04:43)
It definitely helped a lot, even reading labs when we get labs done and whatnot, and just the healing process itself. It was definitely helpful, I will say.

Bri (04:53)
Okay, so you've got this referral to get an MRI. How is that landing with you hearing that this doctor is saying, I think you should probably get an MRI?

Deandra Mayer (05:02)
So at the time, to be honest, I was young. I wasn't really concerned that much at the time. And so I ended up getting the call a couple of months later in 2019 to go for the MRI.

And it took, I would say probably about three, four months to hear back from my family doctor. And they told me that they found a small lesion on the left side of my brain, but that they weren't concerned about it, that it was probably nothing. What I was told was that sometimes with migraines, they will see sort of a small lesion on the brain, but they're not sure what that means.

So my doctor didn't seem very concerned, which led me to not being very concerned. She did say that she wanted me to get another MRI with contrast, but by the time she sent the referral in, it was COVID. So the referral got lost. And then I figured, well, if they're not calling me, then it's not cause for concern. COVID's happening and there's a lot more concerning things happening in the world. So they'll call me when they're ready.

Bri (06:09)
I'm hearing a tremendous amount of trust in the professionals around you, which is not necessarily uncommon, I wouldn't say. However, I have had so many conversations where it’s get a second opinion, a third opinion, trust your gut, trust your instincts and things like that. And I'm almost hearing, not necessarily the opposite with you, but that you had that trust in your team. What gave you that confidence of not feeling like you needed a second opinion or things like that?

Deandra Mayer (06:44)
It was probably my background in nursing that led me to believing that doctors were quote unquote gods and that they were ever knowing and having faith in the fact that if there's anything wrong, they'll let me know. And there's also that naivete of thinking, can't be anything bad because nothing that bad could ever happen to me, you know.

It was definitely a shock when I did end up finding out, five years later.

Bri (07:10)
So what happens in that five-year window? Are you still having migraines? Are there other symptoms that are showing up?

Deandra Mayer (07:16)
I did end my position as physician's assistant for a job that I do now. So I work in security in Canada and I was still having some migraines, a little bit less than I had before, but still a few a year and to the point where it was debilitating. Was bedridden for a day. But because it was only a few times a year, I felt like, okay, you know, it's probably still related to hormones or whatnot. And I didn't really have any other symptoms. Luckily, to this day, I've never had a seizure. The only other thing that I noticed… actually there were two things. The first thing was my vision got worse in those five years. I do wear glasses now for the most part or contact lenses. And the other thing that started happening, I would say in end of 2024 to the point that I got diagnosed in 2025 was that I felt a lot of pressure in my head.

And I thought, okay, maybe this is like high blood pressure or something like that. My mom has a blood machine and I would use it. And my blood pressure was always fairly normal. So it was a little unexpected.

But May 16th, I was at the gym and I was jumping rope. And I had been at that point in the gym for about a year getting back into shape. And I remember feeling this sharp pain behind my left eye and a swelling of my left eye that made me tear up.

And I had had migraines, like I said, since I was 13 years old, this felt very different than a migraine. And it lasted for about 20 minutes. I sat down, I drank some water and it took, like I said, about 20 minutes for it to go away. I figured that's really strange. But I didn't really think anything more of it. I just ended up going home afterwards. And then the same event happened on the 17th and then on the 18th. And again, for 20 minutes at a time, and then it would stop. Same pain, same area, same eye swelling, tearing up.

And then on the 19th of May, I was at the spa with my mother-in-law and my sister-in-law. And I started having that pain behind my left eye, swelling. I had to sit down. And my mother-in-law knew that I had had this recurring sort of sharp pain. And she looked at me and said, OK, I'm taking you to the hospital. Like, I don't like the way you look. And we need to get you seen by someone.

Bri (10:00)
Thank goodness for people who are willing to intervene on our behalf.

Deandra Mayer (10:04)
Honestly if it were up to me I would not have gone.

Bri (10:07)
That animosity of the people around us who are like, this is not right. Something is wrong here. So I take it you listened to her.

Deandra Mayer (10:18)
I did yeah. She probably wouldn't have given me a choice.

Right away they took me in. My blood pressure was really elevated. I was in a lot of pain. And this was the first time out of the four events that happened to me that it didn't go away after 20 minutes. It was persistent. So I was starting to get concerned. And obviously the nurses at the ER were pretty concerned. So they rolled me right into a room in the back and I got seen by a doctor within an hour. Now the doctor did sort of ask me some questions and she figured that it was cluster headaches. Because I explained to her the events that happened. And I was like, yeah, okay, sure, maybe. But it feels different than a migraine. And she kept going back to migraine. And I was like, but I've had migraines and this is very different.

And then I told her about the MRI that I had had in 2020 and that they did find the lesion. I was supposed to go for an MRI with contrast and the referral got lost and I never got a call. And so that raised some red flags on her end and she decided to refer me to MRI with contrast.

She said, don't hold your breath, it could take months. And then, like I said, this was May 19th. I got the call for the MRI on June 10th, and my family doctor called me on June 13th to tell me that I should go in to see her and bring family members with me.

Bri (11:50)
How did that land? That's a very short but powerful statement right there.

Deandra Mayer (11:56)
You definitely know when you get that statement that it's not going to be good news. I asked my mom and my dad if they would come with me. I was the last patient of the day. And she brought me into the room and told me that they found a mass in my brain. I remember at the time I apologized to her because she's followed me since I was five years old. And you can see in her face that it was really difficult for her to tell me that. And I almost felt bad for her having to tell me that. And then I felt bad for my parents who were sitting there and having to hear this. It was like I wasn't even really, like I wasn't considering myself in the moment. I was just considering everyone else's feelings around me.

Bri (12:41)
You said you've always been a caretaker. So that's what I hear in this situation is you're taking care of the people around you and concerned with how they're experiencing this. That natural instinct kicked in.

Deandra Mayer (12:55)
100%. That's definitely what happened to me in that moment. Yeah, so she ended up telling me that she was going to refer me to a neurosurgeon at the same hospital that I got my MRI done at. I found out Friday the 13th. And on Monday the 16th, I saw the neurosurgeon.

The first surgeon I went and saw diagnosed me with an astrocytoma grade two. No one wants to hear a prognosis that's not positive by any means, but he bluntly told me that I was gonna die, that he was not gonna be able to remove the tumor, only maybe a part of it, and that I would definitely have to do chemo radiation, and he gave me about five to eight years to live.

Bri (13:41)
At the age of 28, you have five to eight years to live.

Deandra Mayer (13:44)
Yeah, it was really difficult to hear considering the fact that my whole life, the one thing that I've wanted is to be a mom. It was, you know, just having to think in that moment that that might, that probably honestly wouldn't be a possibility was very, very hard. And I remember asking him, so what you're telling me is that my parents are going to bury me. And he said, yes.

Bri (14:07)
Wow.

Deandra Mayer (14:08)
Very, very hard to take. And my mom didn't take it. My mom is the reason that I am still here today. She did all of her research and found me a second opinion.

We ended up going to the Montreal Neurological Institute. And that's when I met my amazing life-saving neurosurgeon that took one look at my scans and said, I'm going to remove the whole thing and you're going to live a long life.

Bri (14:36)
This is what is so crazy to me about all of this. Listeners can't see me, but I'm literally, I just put my glasses on top of my head and I'm rubbing my forehead and around my eyes because it's just, I struggle with this stuff because on one hand, we are all humans, including doctors, and we only know what we're trained and what we learn and we all have limitations around what those things are.

At the same time, it's mind blowing to me that two neurosurgeons, so they're in the same specialty, can have such polar opposite views on future possibility. And I don't know how that happens. I don't know if it’s lack of resources, lack of training, who knows? It could be, or a combination of things is usually what it is, right? It's never just one thing. I'm getting infuriated for you. And also very happy to hear that your mom pushed for that second opinion.

And it's so interesting, because earlier we were talking about how you trusted your team implicitly and didn't get a second opinion. And now you find yourself in a place where a second opinion really made a huge difference.

Deandra Mayer (15:48)
A huge, huge difference. And I owe it all to my mom. I love her to the moon and back. And other than my neurosurgeon, obviously doing his amazing job, I owe my life to her because, yeah, I'm still here because of her.

Bri (16:04)
And so then you do go forward with the surgery then.

Deandra Mayer (16:06)
I did, yeah. So I went and my neurosurgeon and he scheduled my surgery for the 24th of July. And honestly, I was just like, get it done. Like, I just want to get this over with so I can go back to my life.

I was very fortunate for the location of it. And I know that it sounds kind of strange to say my brain tumor adventure, I'm fortunate. But I do consider myself very, very lucky because of where the tumor was. First of all, he believes that the tumor had been there for about eight years, eight to 10 years. It was seven centimeters large, so quite a big tumor. But luckily, it was in the left frontal lobe.

The only thing it was near that could have an impact was short-term memory. He called it third order speech. So kind of thinking about a word, but not necessarily being able to find the word to say it. I've had a little bit of issues with short-term memory, but no third order speech issues whatsoever.

Bri (17:13)
That's amazing. And of course, I shared up at the top that you also explored clinical trials and are participating in two trials. How did you decide that that was going to be part of your treatment journey? What was important to you about that?

Deandra Mayer (17:29)
So the first clinical trial that I participated in was the AI powered handheld probe. And one thing that kind of convinced me to go forward with that is that my neurosurgeon was one of the members that created this tool. He knew how to use it very, very well. What it does is it detects cancer cells during brain surgery and it'll also tell you whether it's cancer cells or healthy cells, healthy brain tissue. So you can go into depth of getting all those little cancer cells that are remaining. And that to me just sounded like a really great idea. So that was used during my surgery to get as many cancer cells as possible.

Bri (18:12)
And so did he approach you about this or you were aware of it or you asked about trials? How did this come up?

Deandra Mayer (18:18)
So he actually approached me about and I was very much willing to participate in the clinical trial. I, through nursing, heard of a lot of clinical trials and anything that I can somewhat give back to medicine, I will. So I had no issues with participating in this, especially seeing as there's no real harm to it.

Bri (18:43)
If I'm understanding correctly, he's using it during surgery to almost navigate where are the edges of your tumor to get as much of the tumor without getting healthy tissue.

I'm obviously not a medical professional. If there's a doctor listening right now, they'd probably be ashamed at that description. But for a lay person who doesn't know anything, am I understanding that accurately?

Deandra Mayer (19:07)
Yeah, you're spot on. No, that's exactly, from what I understood, was the goal of this tool being used on me.

Bri (19:14)
Nice. And so how much of the tumor was he able to resect?

Deandra Mayer (19:18)
99%.

Bri (19:19)
Wow, of a seven centimeter tumor. That's incredible.

Deandra Mayer (19:23)
He did a couple MRIs post-op and then another MRI a month or two post-op. And it still showed 1% of the tumor on one of the edges. And he said, how would you feel if I went back in and I got the rest of it? And I said, go for it.

So October 16th was my second craniotomy. And I can officially say that I'm cancer free.

Bri (19:49)
What was it like the first time you got to say those words?

Deandra Mayer (19:52)
I cried. It was just saying that I had cancer was a hard pill to swallow. The fact that I was able to say that I was cancer-free was unbelievable. I'm again very, very, very grateful to him and his team.

Bri (20:08)
And so how soon after surgery did you start having conversations about voracidinib?

Deandra Mayer (20:17)
It had been mentioned to me by him prior to the first craniotomy that I had. But his motto is very much, if I don't have to like, quote unquote, prescribe you chemo and radiation, I'd rather not go that route, especially at your age. And I was very grateful for that. He said, if I can respect it, let's do that. So I was very much okay with that route.

Bri (20:40)
With so many of these newer trials we don't have that long-term data to know what is that long-term impact of the short-term treatment right and so especially someone at your age ideally you're gonna live another 50, 60 years. What's the long-term impact of that and we don't have any idea yet because it hasn't been around that long. How much did that weigh into your decision, if at all?

Deandra Mayer (21:05)
It definitely weighed a little bit into my decision of going ahead with voracidinib. It's definitely like a scary undertaking. But one thing I told my team, and when I say my team, I mean team D, which is all the people that I have on my support system, was that I was looking for the advancements in medicine that is ever evolving. And for voracidinib, from the data that they've gathered so far is positive. And so I sort of maybe again, naively put all my faith in the fact that I'm looking for these new technologies and it seems to be working for some people with minimal side effects, if you compare it to chemotherapy and radiation. And I thought, why not, I've already gone through two brain surgeries. I think I can manage taking a pill once a day.

Bri (22:03)
And how's it going for you?

Deandra Mayer (22:05)
It’s going well. I started almost a month ago. And other than fatigue, I haven't had any issues with it, luckily for my case. I am doing regular blood work just to kind of see where my levels are at. I know that it can affect liver enzymes, but luckily so far I've had no issues.

Bri (22:24)
And for those people who are unfamiliar with voracidinib, and of course, your experience is not necessarily representative of everyone's, right? We want to acknowledge that. In your particular case, what's the plan around voracidinib?

Deandra Mayer (22:38)
You could see it some way as unfortunately, some way as fortunately, something I will be on for the rest of my life as long as my body can tolerate it. I am at the max dose. I take one pill a day in the evening. That was definitely something that was a little bit difficult to hear is that I will be on this medication for the rest of my life. And that's why after some discussion and the uncertainty of the future side effects of this medication, my boyfriend and I decided that it would be a good idea to do fertility treatments for future children.

Bri (23:11)
What did those conversations look like? How did you land at that decision?

Deandra Mayer (23:14)
Because voracidinib is a fairly young medication, they're unsure of the potential risks on fertility. My boyfriend and I both have wanted to be parents. It's something that we sort of first talked about when we first got together eight years ago.

It kind of like a no-brainer because they were so unsure of future possibilities. The discussion with my neurosurgeon was like, I want to be a mom. So whatever we have to do to get me there, I'll do it.

It was something that was mentioned to me by my now oncologist who said, if you would like that option to preserve your eggs, we can go about that route. Luckily for us cancer patients in Canada, it is 100% covered if you have a cancer diagnosis. It's something I've always wanted, like I said, to be a mom, I had no issues going through the process.

Bri (24:10)
That's wonderful that you not only have the foresight, but the opportunity to be able to take advantage of that.

Deandra Mayer (24:18)
Yeah, I feel very fortunate that not only did I have that opportunity, but also that financially it wasn't a burden on either of us to have to go through. I know it's not the same in many places in the world. So I'm forever grateful for that opportunity.

Bri (24:38)
I hear it was an easy decision to decide to do the trials because I wanted to advance the field and I wanted to do the cutting edge things and give myself the best chance. And it was an easy decision to do fertility treatment because I always wanted to be a mother and I had the opportunity without the financial burden and this word easy keeps coming up. But I know that there have been challenging components of this too. We all have that. What is Deandra's experience behind closed doors when no one else is around?

Deandra Mayer (25:14)
There's good days and bad days. It at times feels very, very isolating. Not a lot of people can relate. But I think the one thing that has helped me through this last year has been positivity. I am positive to a fault. Ask anyone in my team D, they will say she kept a smile through the entire thing. Even going into both of my surgeries. I walked in, I got on the table with a smile on my face. I am very grateful for the life that I have and I'm very grateful that I get to keep living it.

Bri (25:49)
That's amazing. What is the life that you have today?

Deandra Mayer (25:51)
I live in an apartment with my boyfriend. We've been together for eight years. I have an amazing job. I've gone back to working full time. I’m actually leaving for France next week. I'm going on a trip with my mom and my sister. My boyfriend is Greek, so we're going to Greece this summer. I get to travel. I've got a really amazing support system, great parents, an amazing sister, just some great, great people in my corner that I get to vent to. I also have really amazing friends. My two best friends, Valeska and Cam, they're great. They've supported me through this whole journey. I also have some really amazing people at work that as soon as I was diagnosed and I let them all know, were in my corner. So I think just the overwhelming support that I've had really been brought to light through this diagnosis. I’m just very, very grateful every day for everything that I have.

Bri (26:52)
What do you see in your future?

Deandra Mayer (26:54)
I see marriage. I see two children, hopefully. And just to get to watch them grow old, that will be the ultimate blessing for me. Hopefully no recurrences, fingers are crossed.

Bri (27:08)
Yes, yes, It sounds like a very full life now and in the future.

Deandra Mayer (27:13)
And that's all I've ever wanted.

Bri (27:14)
Deandra, how has all of this rewired your mind?

Deandra Mayer (27:17)
It's definitely made me realize how grateful I am for everything that I have. It's made me realize how grateful I am for my neurosurgeon, my team, my people. I’m just happy to be here, to be honest.

Bri (27:31)
Well, I'm happy you're here too and happy that you've been so willing to share your story so generously and be able to bring some different points of conversation to the table. Some things I'm sure listeners are thinking about and want to have conversations with their loved ones in their own lives that maybe are a little nervous around and you've maybe given an example of how to navigate that.

If they do want to get in touch with you and they want to connect and learn more and just be in community with you, how can people find you?

Deandra Mayer (28:04)
So I am on Facebook, Deandra Mayer. I'm also on Instagram. You can find me @Deandra_K3lly. Otherwise, do your best to stay positive, everyone. Give your tumor a name, that helped me. Realize that the little mundane things in your life are something to be grateful for.

Bri (28:22)
I couldn't agree more. Well, thank you so much, Deandra, and I will include links to your socials in the show notes for people to easily find you.

Deandra Mayer (28:30)
Thank you so much for having me, Bri.

Bri (28:38)
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 (29:10)
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.