Ep 31 | July 1, 2026 | 27 mins

In this episode, Jennifer Pugh shares her remarkable journey surviving 20 months with a grade four glioblastoma, alongside her husband's diagnosis with kidney cancer. We discuss the challenges of brain cancer, the importance of community, and finding meaning amidst adversity.

Tumor Type: glioblastoma
Tumor Grade: IV
Symptoms: seizure, dilated pupils
Treatment: surgery, radiation
Patient, survivor
Current Stage: Survivorship

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 Jennifer Pugh
Facebook: https://www.facebook.com/jennifer.pugh.790
Instagram: @dasherbeau

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 (00:00)
I want to start this episode with deep gratitude. I recently looked at the trajectory of this podcast since it launched, and it has far exceeded what I thought it would be. I am humbled by how vulnerable you've been in sharing your stories, and I'm so grateful for your trust. I'm also so, so encouraged by the new connections being made between you and our guests. And I want to get your stories in the ears of those who need to hear them, which is why I'm asking for your help.

Rating this podcast wherever you listen is a quick click for you, and it has a tremendous impact on getting in front of our community when they need connection, encouragement, and support. Would you be willing to give a five-star review to help us continue growing this community?

I really appreciate all the support you've given and can't wait to continue having incredible impact.

Also, have you been thinking about sharing your story? Wherever you are in your journey and whatever your relationship is to the brain tumor community, I'm looking for more guests for future episodes. Check out rewired-minds.com/guest to share your interest. Your story matters. Truly. It really, really does. And I want to help you share it.

Bri (01:22)
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 (01:46)
Today's guest is Jennifer Pugh, who was diagnosed with a grade four glioblastoma in May of 2023. At the time of this recording, that's 20 months ago, which is incredible for a glioblastoma diagnosis. So I'm very much looking forward to digging into Jennifer's experience with her. Welcome, Jennifer. How are you doing today?

Jennifer (02:06)
I'm doing great. Thank you so much for this opportunity.

Bri (02:09)
Absolutely. I'm so glad that our paths crossed. You have a really unique story to share. And I think that there's going to be a lot that people are going to relate to and connect with. And of course, there's always a bit of cathartic feeling when we kind of can release some of the stuff we've been holding in. So hopefully we'll be able to accomplish a little bit of all of that today.

Jennifer (02:28)
Right. Yep.
Bri (02:29)
What made you want to share your story?

Jennifer (02:31)
I didn't realize how many people were affected by brain tumors and by glios. I had never really heard about it before my diagnosis. Brain tumor was kind of something you joked about, like, my head hurts, it's probably a brain tumor. But I also see that there's not a lot of research dollars that are put into it because a lot of us don't survive that long to be researched. So I kind of wanted to help in building the community and if something I share can help someone else, I'm glad.

Bri (03:09)
You hit on something so important about the research side of things. It's, you know, the longevity of the studies where we can really learn something. It's also the size of our community. It's so small. And so finding enough people to participate. There's also over 120 different tumor types. So that in and of itself is another aspect to tackle. So gosh, I'm so glad you brought that up because that definitely is a big challenge that we face in finding answers and getting rid of some of these really big question marks that we all carry with us.

Let's go back to before May 2023. How old were you when you were diagnosed?

Jennifer (03:53)
47.

Bri (03:54)
So I imagine at the age of 47, you were pretty established in a life of some sort. What did that life look like?

Jennifer (04:02)
I had worked for our local school system in human resources for many, many years. The last job I had done was a workers comp coordinator. And I was ready to try something different, so I boldly left that job and went to work for a private company as an insurance adjuster focusing on workers comp.

It was a big jump for me. I was now working 100% at home. I had to take and pass the North Carolina Adjusters License. I had really stepped out of my comfort zone and that was in October 2022. So by May, I was still fairly new in this position. So it kind of threw me for a loop when all of this happened.

Bri (04:49)
What a big leap. That's amazing. Of course people make career shifts, but something where you're not just studying a new skill set and a new industry, but at the level of getting a new license that I mean, that's not just a pivot. That's entirely new. The word risk taker is something that's coming to mind as I'm hearing this? Is this something that's always kind of been part of who you are?

Jennifer (05:14)
No, absolutely not. I always played it safe. I took the safe jobs and working for state government was safe. I could build a retirement, although the pay isn't great. So this was a huge leap for me. I was not brought up to take risk like that. You want to make sure you're always in a stable situation. My husband had kind of switched his career. So he was doing really well at the time. And so I felt like now might be a good time to try this.

Bri (05:46)
So it's almost like there was some sort of safety net there that kind of allowed you to feel more confident maybe. Is that what I'm hearing?

Jennifer (05:49)
Yeah.

Right, yes.

Bri (05:54)
So what prompted you to go to the doctor?

Jennifer (05:59)
I really never had any symptoms. I mean, I would have an occasional headache. I remember I was working at home one day and I would usually take a break around 10 o'clock. I went into my bathroom and I looked in the mirror and my pupils were two different sizes. And I was like, that's weird. I have never seen that before. And of course I Google it and it's like, it could be nothing or it could be this terrible thing.

I'm like, oh it's, you know, it's fine. It lasted for several hours and then it went back to normal and I didn't think anything about it.

During that time, my husband had been diagnosed with kidney cancer and he was scheduled to have his kidney removed in the first part of June of 2023.

And we knew our summer would pretty much be shot. He wouldn't be able to go on vacation. So we decided let's take a long weekend of a Memorial Day and we decided to fly up to Chicago. I had never been there and I had actually never flown in a commercial plane.

Bri (06:54)
From a life of taking the safe roles and having security and safety and all of that. I guess keep coming back to this word of risk taker and doing new things and adventure.

Jennifer (07:07)
Yeah, we flew up on I believe it was a Thursday and the flight was perfect. My husband was like, I'm starving. I've been wanting a Chicago dog for months. So we decided to walk down to Portillo's and ate lunch. Everything was fine. We were going to go back to the hotel and I remember I wasn't feeling quite right. When I was much younger, I would pass out sometimes. And that's how I felt. And I thought, my gosh, this is so embarrassing. I'm going to faint right here in the street.

That's pretty much the last thing I remember. He said that I grabbed his arm and said, wait a minute. And he turned around and I started just babbling incoherently. He it wasn't words that I could understand. And then my eyes rolled back in my head and he lowered me to the ground. And that's where I had this, I guess, a grand mal seizure. He was a volunteer firefighter and EMT for several years. And he knew what was happening. He could see the posturing from the seizure and then unfortunately I stopped breathing. He couldn't find a pulse so he did CPR. I don't remember any of this which is probably good.

I woke up many hours later in the ER and he was there with me. Apparently I had been awake the whole time after he revived me, but I don't remember anything. We met with one of their surgeons, and he said we need to do emergency brain surgery. You've got a tumor and we need to get it out.

Bri (08:45)
So you've had this seizure in the middle of the city that you've never been to before. You are at a hospital that you've never been to before, working with a doctor who you've never met before. And now they're telling you that you need to go into emergency surgery. How are you handling all of this? As someone who likes stability and predictability and comfort and safety, it feels like in this situation, all of that is gone.

Jennifer (09:14)
Yeah, I think I was in shock for the first part of it. I don't think I really understood how serious it was. I mean, I knew having brain surgery is pretty major, but I don't think I could fully grasp what was happening. I was like, okay, we're gonna have surgery. And they had me hooked up to all these electrodes and they're monitoring things. And I remember I would fall asleep and then come back. It was the next day they got me in for surgery. So I didn't have a long time to really think about it.

Bri (09:51)
And so you have your surgery. What were they able to accomplish with the surgery?

Jennifer (09:57)
The surgeon told my husband it was a glioblastoma. I don't think that they really told me at the time what it was. He said, I got as much as I could and I took a lot more brain tissue than I had planned on just because I wanted to get as much as I could. It was a very small tumor. But he said basically with the glio because it has these tentacles, it's like throwing sand into shag carpet and then you've got to get every piece of sand out. If there's one little piece of sand that can regrow as a tumor. There’s no guarantee that you would have gotten it all. I understood what he was saying about that.

The recovery was not bad at all. He kind of explained that the brain doesn't feel pain. So you're not going to have pain from the surgery site. I didn't know that either. And I really didn't have any pain. The surgery was on a Friday and they discharged me that next Monday. So it was a pretty quick turnaround, although they wanted us to stay in Chicago for two or three weeks, which we couldn't do that. Unfortunately, we had lost our fabulous hotel. I never got to stay there, so on our bucket list is a revisit to Chicago.

Bri (11:14)
Yes, yes.

So there's a transition back home, not just in medical terms, in terms of doctors coordinating with one another and getting updates and giving updates and all that kind of stuff. But for you and your husband as well, what did that period look like?

Jennifer (11:34)
I was discharged on a Monday and really I felt pretty normal. I was tired and we did quite a bit of sightseeing with our time left in Chicago. We ended up staying through the following weekend.

Bri (11:51)
Hold on. You came out of brain surgery for a glioblastoma and days later you're sightseeing.

Jennifer (12:01)
Yes.

Bri (12:02)
You are one determined woman. I love this so much. I am not gonna lose my vacation.

Jennifer (12:10)
Right, I do try to make the most of situations. But yeah, I would say for anybody who's just come out of brain surgery, the best sightseeing you can do is the riverboat tour.

Bri (12:23)
Yes, I imagine so.

Jennifer (12:26)
It was so relaxing. Yeah, we did. I mean, we would kind of do a little bit, rest. But we did quite a bit. We took advantage of being there and me feeling okay. The doctor had wanted us to stay for several weeks, but we told him we live about 45 minutes from Duke Hospital, which has got a brain center as well. And he actually was friends with the head of the brain center at Duke, so that was kind of the reason he let us go sooner than three weeks.

Getting home, I followed up at Duke and I was going to need to have regular scans. And it just happens that the doctor down there knew a neuro-oncologist who was one of his fellows at the hospital here in my city. And so he said, I'm going to transfer your care over to him just for maintenance. And then if we have a recurrence, then we'll discuss what to do then. He's been great. I've been seeing him since I pretty much got back and he's followed me through multiple scans, radiation and everything.

Bri (13:36)
You also mentioned your husband's diagnosis in all this and the whole reason you were coming to Chicago. What happened with his diagnosis alongside of your experience?

Jennifer (13:45)
Yeah, so they had scheduled his surgery for early June. They had also put a stent in to try to keep the cancer from growing anymore. Once we got back, he was able to have it rescheduled for like the third week in June. And when they went in, the cancer had actually grown around the stent and was moving its way up to the bladder. So it was a little more involved. They did remove some of the bladder, the whole kidney, but they felt sure they got it all. We were in recovery together basically.

Bri (14:22)
Both of you being patients and caregivers at the same time. That's an interesting dynamic, I would imagine. How did you all navigate that?

Jennifer (14:29)
It was difficult. I wasn't released to be able to drive, so we relied a lot on family. Fortunately, his surgery was here in our town at the hospital, so it wasn't having to drive here and there. I can't remember how long he stayed. I don't think it was a week, but he stayed several days and then was discharged home. And so at this point, I was five days a week going to radiation. My mom would take me and he was home recovering.

Bri (14:59)
That's a lot to juggle. That is a lot to juggle. How did you take care of yourself?

Jennifer (15:05)
When I got back home, I tried to work again and it was, it was like my mind wasn't ready to do this complex job. So I took a leave. It unfortunately was without pay because I hadn't been on the job for a year to qualify for FMLA.

I just kind of made my job being my radiation five days a week. I tried to do things I enjoyed. I went to the pool a lot. I had a great tan that summer. I just kind of tried to, I guess, reshift my priorities of now I'm not focused on doing a job. My job is getting the radiation done, getting the scans done, managing the side effects that come with that.

Bri (15:50)
Yeah, yeah, absolutely. And you mentioned earlier too that you always try to look at the positive side of something or find the positive aspect of any moment. The reality is sometimes it's challenging to find that. If you're open to it to explore that side of things too and learn like what were the challenging aspects, those moments where even when you try to find something positive, it just wasn't there.

Jennifer (16:16)
Most people that know me know I navigate with humor. It's like people would ask us, know, how did y'all get through this? How did you do it? And we're kind of like, well, what was the other option? I always use humor to get through things that might be not good all the time.

There were times where it's like it all hits you at once and I'm like, you know, people who smoke get lung cancer. What did I do to get brain cancer? I mean, this is not fair. I had tried to take care of myself and it's just the luck of the draw almost.

Bri (16:51)
Gosh, I just I feel that in my gut hearing you say that. I feel that way too with my own diagnosis. Back to your point in the very beginning, there's so little research and funding to find those answers that we don't even know what causes this, let alone how to prevent it from happening. The prevention feels beyond the horizon at this point, because there's so much that comes between where we are now and that point.

One of the things that you shared with me ahead of the recording, and I'll actually just read it the way you wrote it, because I think it's really powerful for listeners to hear your words. It says, there is pressure to make my life mean something. I feel guilty if I waste a day laying on the couch. I have bouts of happiness, but there is always an underlying feeling of guilt. What’s the guilt piece?

Jennifer (17:43)
I think since going through this I've done a lot more research. A lady I worked with, her husband was diagnosed with the same thing. And unfortunately his was inoperable I believe. He died within several months and it's like, why have I been spared this long? That kind of makes me feel guilty that I'm not doing enough with my life for it to have meaning for me to be here. It's like, why am I here and he's not? I don't know that people understand the guilty part, I feel like there's this pressure to make everyday count. If I'm not making each day matter, I'm wasting a day that somebody else should have had.

Bri (18:24)
Where do you think that pressure comes from?

Jennifer (18:26)
I think it comes from within. I guess inside I've always pushed myself. If I'm gonna do a job, I'm gonna do it the best that I can. I have a tendency to let myself down when I see that I haven't done the best that I could or I've made mistakes.

One of the first times I met with neuro oncologist, he encouraged me to reach out to other people to be a strong person for other people who may be going through something, not necessarily the same diagnosis. That prompted me join a group through my church called Steven Ministers. I'm just a listening ear for someone who may be going through something. I'm not ordained. It's just kind of being a positive person, a person that they can just let loose. That’s one way I've tried to bring more meaning into my life.

Bri (19:21)
Who serves in that role for you?

Jennifer (19:23)
I don't know that I really have anybody. Yeah, I have family, definitely. Very close with my family and my husband. I have two dogs that offer me major therapy.

Bri (19:34)
Ugh, gotta love our pets, yes.

Jennifer (19:35)
Yeah, I don't technically have that one person, which I probably need.

Bri (19:45)
There's nothing like being able to sit across the table with someone look in their eyes and know that you don't need to explain anything because they get it. It's really, really powerful. It's really powerful. I'm so grateful, Jennifer, that you brought this piece because I think this is an aspect about survivorship that if you're not in it, it's hard to understand. People hear the word survivor or survivorship and it seems very positive and empowering. And I think a lot of people mean it in that way.

But there's this flip side of survivorship of like you were saying, why me? And feeling guilty that you're here when others are not or the pressure to make something out of every day. It seemed like this switch is flipped by receiving this news. And so I'm really grateful that you brought this into the conversation.

With all of this, your own diagnosis parallel to your husband's experience, your relationship with survivorship, your relationship as a patient, knowing that you have a grade four glioblastoma, which currently generally does not have a strong prognosis, what do you see in your future?

Jennifer (21:00)
Right after my surgery, we were stunned. We start thinking about the future and is there a future? And then you start planning out your burial, if you want to be cremated. It sounds morbid, but I felt like that I needed to get that set up because I'd had no idea how long I would have. If you read statistics, it's not very long at all.

And then at some point, the scans kept coming back clear and it was like, you know, you don't want to think maybe it won't ever come back because that's the moment it will. But there is that kind of hope in the back of your brain. But I just feel like my relationship with cancer is it's gonna get you in the end. I don't know how you avoid it. It seems like people I’ve known who they've overcome it. They're healthy, they're well, and then it seems like it comes back like almost with a vengeance. You thought you got me. I'm gonna get you.

So I don't know. It's a ugly word. You know, we have a really good cancer center here. There's a group called Hirsch Wellness that they have classes like yoga, craft classes. I've taken some of those because there's not any support through the cancer center for brain tumor patients. So, I've taken some of those classes. I'm hesitant to share my diagnosis when I have done it. All of sudden you've got 20 people staring at you like, holy crap. Because there's such a big support for breast cancer. I think even kidney cancer, but not so much support with the brain cancer.

Bri (22:39)
Yeah, and it's fascinating, for listeners, I'll point you to the episode that I did with Northwestern Medicine Malnati Brain Tumor Institute. I believe it's episode five. They shared a little bit more about why that is so limited and you're spot on, breast cancer, lung cancer, kidney cancer has a lot of support.

They did a really great job of explaining why that is. Unfortunately, in order to get eyes and funding and people to listen, the worst thing has to happen, which is that our community has to grow large enough that it makes sense for people to put dollars towards finding answers so that they can get a return on their investment is really what it boils down to.

Of course, they shared it in a much more eloquent way than I did in a much more professional way, but I'm not a doctor and I don't have to protect my credential. And so, you know, I can say it a little more bluntly and directly, but that's the fact of the matter that we're facing, unfortunately. It does make these conversations challenging. It adds a complexity to it because this community as a whole is at a disadvantage and it's beyond our control, really. Okay, I'll get off my soapbox.

Jennifer, how has all of this rewired your mind?

Jennifer (24:03)
Appreciate family probably a lot more than I did in the past. It's helped me grow closer to friends and then on the flip side I've lost some friends and I'm okay with that. This journey isn't for everybody and so that's okay.

I do a lot of writing now, just on kind of the humor of what life is, just to not always have to talk about the diagnosis. It's like, I'm trying to kind of show that there's more to life than just this. I've been compiling writings that I've done. I'm hoping, hoping I can figure out how to maybe publish just a little short story.

Bri (24:49)
That would be amazing. As you were kind of talking about starting writing that was in the back of my mind of is she going to publish something? That's very exciting. What kind of writer are you?

Jennifer (24:59)
It's usually just kind of crazy things that happen to me that are hilarious that probably don't happen to other people. Taking notice of life. A lot about my dogs because they're very humorous. It's just basically kind of little writings about life.

Bri (25:16)
I love that. I can't wait to see it out on the bookshelves and online to be ordered. I'm ready for it.

Well, Jennifer, if listeners connected with you and want to build community with you, where can they find you?

Jennifer (25:30)
I have Facebook, that's where I usually put most of my writings. And also Instagram.

Bri (25:37)
Awesome, perfect. And I will include links to both of those in the show notes. Thank you so much for joining, Jennifer. I appreciate you giving your time, sharing your story. I think that your story is a unique one to share, not only from the perspective of 20 months survival with a glioblastoma grade four, but also having this experience alongside your husband's diagnosis as well. And I think it's gonna help a lot of people out there who might find themselves in similar situations. So thank you very much.

Jennifer (26:15)
Absolutely, thank you.

Bri (26:22)
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 (26:54)
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.