Rewired Minds Podcast: Sarah Bare

Sarah Bare

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Episode 3 | December 17, 2025 | 42 mins

In this episode of Rewired Minds, Bri Salsman speaks with Sarah Bare, a brain tumor survivor, about her journey with astroblastoma. Sarah shares her experiences before and after her diagnosis, the challenges of navigating the medical system, and the emotional impact of living with a brain tumor. She discusses her decision to take a watch-and-wait approach to treatment, the importance of self-discovery, and how her “pain paints purpose.” Sarah emphasizes the significance of community support and the need to listen to one's body throughout this journey.

Sarah's journey began with a diagnosis of astroblastoma at age 35.
Navigating the medical system can be challenging and frustrating.
Choosing a treatment path is a personal decision that requires careful consideration.
The watch-and-wait approach can be anxiety-inducing but necessary.
Emotional awareness and communication with loved ones are crucial during treatment.
Work accommodations can provide relief but also create stress about future expectations.
Self-discovery is an ongoing process, especially after a life-altering diagnosis.
Finding purpose in pain can lead to personal growth and community support.
Creating a list of personal goals can help prioritize self-care.
Humor can be a powerful coping mechanism in difficult times.

Connect with Sarah Bare

Facebook: Facebook.com/sarah.bare.21

TikTok: @bare2believe

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Interested in being a guest on a future episode? Visit rewired-minds.com for more information and to submit your request.

Work with Bri Salsman

If you’d like to work more closely with Bri as your coach, visit rewired-minds.com for details.

Disclaimer

The stories and experiences shared in this podcast are personal accounts from patients, survivors, caregivers, family members and friends affected by brain tumors. This content is for informational and awareness purposes only and is not intended as medical advice. Always consult with qualified healthcare professionals regarding your specific situation and treatment options. Most importantly, take care of yourself as you listen and process.

Transcript

Bri (00:00)

Bri (00:25)

I'm Bri Salsman, a brain tumor survivor and life coach, and you're listening to Rewired Minds, a podcast where we share brain tumor stories that change us. Today's guest is Sarah Bare. Welcome Sarah, how are you today?

Sarah (00:37)

I'm good, how are you?

Bri (00:39)

I'm doing well. Thank you so much for your willingness to join an episode and share your experience. Why don't you kind of share with the listeners a little bit about who you are.

Sarah (00:52)

Sure. I'm around 36 years old. I live in South Carolina and we recently built a house on eight acres of woods. And I live with my husband and two dogs. Their name is Bo and Lucy.

Bri (01:09)

I love those names. Eight Acres is beautiful. You've got all kinds of space.

Sarah (01:15)

Yeah, that's what we intended for. Just some space and quiet.

Bri (01:16)

Now did this space and quiet come before or after your diagnosis, which I know we'll get into in a little bit.

Sarah (01:27)

It was before.

Bri (01:28)

Okay, so you already had it. Gotcha, gotcha. Let's dig into the before. What did life look like before diagnosis?

Sarah (01:38)

It was more so just like the everyday grind of work and picking up the kids and managing schedules of different families and traveling and working all the time.

Bri (01:51)

Yeah, and what did you do for work?

Sarah (01:53)

I work full time for the Army National Guard in North Carolina and I'm a what they call a logistician or on the military side they call it a supply sergeant. So my job is very physically demanding along with mentally demanding. It's just the hours and the time frames vary a lot. Yeah me and my husband both have like a… kind of like a storm response is how we work. That's anytime there's hurricanes that come on the coast, we're always probably both being activated to go help with storm work. He helps by powering the power lines and I go help. I send in troops and vehicles out to help the civilians that may be stranded.

Bri (02:46)

Wow, talk about meaningful work. I'm sure you have seen quite a bit through all of that experience.

Sarah (02:54)

Yes, I've been in the military for 19 years now.

Bri (02:58)

What made you want to join the military?

Sarah (03:00)

Oh gosh…

Bri (03:01)

Is that a loaded question?

Sarah (03:03)

It is. It actually took me some a couple therapy appointments to figure out why and be honest the brain tumor kind of helped put things in perspective because I joined when I was 17 having no clue what I was getting into. I'd make a joke that I told people I joined because they offered me free t-shirts and which is

Sarah (03:27)

kind of true. And then as soon as I started diving and researching and realized that they could pay my way to college, they could keep me fit, which is totally not the case. It's still a self thing you have to do. But back then I had no clue. But after being diagnosed and realizing where the tumor was in my brain, it's on the emotional side of my brain that actually impacts impulsive decisions. So it kind of makes more sense of why I just woke up one day and said, I'm going to do this or I woke up one day and said I was going to get a motorcycle like with no experience, no previous training. Like, so it just kind of makes sense now.

Bri (03:56)

So how old were you when you received your diagnosis and what was it?

Sarah (04:16)

It was just last year, so I was 35 years old and the name for it was astroblastoma.

Bri (04:27)

Had you heard of it before?

Sarah (04:26)

Heck no. And the crazy thing is many doctors haven't either. It actually, when I went to research, it's not even a category on the Mayo Clinic's website. And it's so rare that not even the WHO organization has a grade classification for it. So they can't even tell me what stage it's at or how to react to it, whether to be careful with it or to be aggressive with it or just monitor it. So that was very frustrating was… I say frustrating. It's a good and a bad thing. The best way I can see it's like a combination of two because you got a glioblastoma and then you have an astrocytoma. So I guess they combine the two because it can react either way.

Sarah (05:15)

It can either act like a glio or it can act like an astro. So now they just call it an astroblastoma.

Bri (05:23)

Got it, wow. What were you experiencing that led to you to asking questions about what's going on?

Sarah (05:32)

I had migraines nonstop and I've never really had… Well, I can't say that. I guess I always had headaches. I just never took them serious enough and thought everyone had headaches. But it got to a point where the headache would not go away no matter what I took to get rid of it. And I would, when I'd go to sleep at night, I'd still have it. I'd wake up in the middle of the night at 1, 2, 3 a.m. and I'd still have it and I'd wake up to go to work the next day and it would still be there and it would stay there just 24-7 for at least two to three weeks. Well, almost six but yeah, it kind of stayed that way for quite some time.

Bri (06:15)

I can't imagine how, at the very least, distracting that must have been, especially with the kind of work you're doing.

Sarah (06:23)

It was very distracting because the day that the migraines showed up was the day that also two to three hundred soldiers showed up to report to our duty location and it was very distracting because I noticed like when I'd go to my meetings in the morning and report to the first sergeant about things, he would ask me the same question every morning because I would forget to give him a follow-up and it was unlike me to do that. Usually once I write things down I do them and give them an answer. But I realized after a few days, I just would not remember to give him an answer. Something as simple as, what time are we eating breakfast?

(07:03)

Yeah, it seems like a pretty quick shift. I mean, despite having the headaches for a while, it seemed like there's a marked moment where it got significantly worse. So then did you make an appointment with a doctor? What were your next steps after that?

Sarah (07:20)

I had an appointment with several doctors actually. My original primary, I tried seeing them and they wrote it off as a migraine so they gave me migraine medication to take for a couple days and that didn't help so I reached back out to them a few days later saying it's not working. Can I come back on Friday to get a scan? Like I was requesting an actual CT scan, but they didn't get back to me until late Thursday saying, they're not open. They're not going to be there Friday. So I remember specifically sitting in my truck crying because I didn't know how to go about get this looked at. And it took me calling one of my best friends for her to kick me in the butt and say, you better work hard to find another doctor because you would find, like if I was sick, you would find me doctors, five doctors within a 20 mile radius. And she goes, if it was any one of your other friends, you would have done this for them. And I need you to put the same effort that you put into your friends as you put into yourself and go find somebody. So…

Bri (08:28)

That's a good friend.

Sarah (08:31)

Yeah I know. So I started, you know, Google searching doctors calling probably five to 10 different offices to see who had any immediate availability. I found one, thank goodness, the receptionist was just so sweet and so kind. And she was so concerned about how I was feeling at that moment to be like, you know what, we have a slight opening tomorrow And I took it.

Bri (08:57)

Well, and you alluded to earlier, you all have got eight acres of property. And I imagine that means you're probably in a fairly rural area where it might be challenging to access medical treatment, let alone specialized medical treatment that would be needed for this kind of diagnosis. So when you finally got that appointment and received that diagnosis, how did that land with you?

Sarah (09:23)

I guess it depends if you're talking about whether it be the diagnosis of the cancer or like the first initial concept that there's a rock in my head.

Bri (09:35)

So these were two different conversations then.

Sarah (09:37)

They were, yeah, they're definitely two different conversations.

When they initially took the CT scan, they found there was a mass in my head. And then I did not expect to get the results back that quick. So as soon as I went to the appointment, I went straight back to work and I got the results when I got to work.

Bri (09:58)

Oh wow, that was fast.

Sarah (10:00)

Yeah. So and then it took them, they did an MRI just to make sure that it was.

Hey yeah, there is a mess in there just to confirm it. It probably took me, from the time of noticing that there's an object in my head and to the time of diagnosis, it was probably a eight to ten week gap.

Because when they initially when I first saw the neurosurgeon about the mass in my head, he thought it was benign. He didn't think it was anything concerning about. So that was the initial impression. And then it took surgery, it took biopsy, and then it took six weeks to wait on the biopsy to get the actual diagnosis of the disease.

Bri (10:34)

Yeah.

And so you get this diagnosis, paint the picture, where were you, who was with you when you get this news?

Sarah (10:53)

I was at the oncology team that's in Charlotte at the Living Cancer Center. And to be honest with you, I was going to go by myself because I've been going to all my other appointments by myself. Like I'm a very individual type of person and my first oncology appointment, they canceled because my neurologist said there wasn't enough time to study my tumor to make an appointment. So they first canceled the first one. So this was like my second oncology appointment. And honestly, I didn't know why I was going to it. I was just like, oh, okay, it's just an appointment to me. It's just another checklist. Let's just go to this appointment. So I guess what hurt most is nobody pre warned me that, hey, you may need a friend to go with you.

Bri (11:34)

Mm-hmm.

Sarah (11:42)

It's sad because the neurologist, I think he didn't probably under intentionally, he didn't release the results of my biopsy until the hour that I got into the oncologist room. So thankfully I had that hour to contact my husband and be like, hey, I don't think this looks good. And he was able to leave work and meet me. But otherwise, I would have just went by myself.

Bri (11:57)

Mm-hmm.

Sarah (12:08)

I would have got this news by myself, but thankfully my husband was able to make it there with me.

Bri (12:14)

It makes such a difference to have someone present and that's something I don't want to say that I learned the hard way because I mean I imagine our experience is probably similar in the respect that we didn't plan for this, right? And so there's so much that we don't know, so much that we don't know to ask.

So much that we don't know what to prepare for and that's a place I found myself even after diagnosis is going to appointments on my own that I thought would just be, you know, mundane regular old appointments and then I'm sitting in the room and I'm like, oh, oh, oh, oh, stop, pause, wait. Can we rewind so I can have someone here? And of course, you know for me and in those situations

Sarah (12:55)

Mmm-hm.

Bri (13:09)

you know, it too late. So I had to figure out navigating on my own, but then I'm walking out of the office. I can't get out fast enough to make those phone calls and get someone on the phone that I can talk through with it and things like that. And it's tough. Those early days, it's like drinking from a fire hose and almost don't even know what's up from what's down and let alone to be able to think about what

Sarah (13:17)

Right.

Bri (13:34)

kind of support you may or may not need at each step along the way. It's amazing that your husband was able to join you on such short notice.

Sarah (13:43)

Yeah, it was because I forget a lot and if I'm not prepared to bring a notebook, then I'm not going to remember anything.

Bri (13:49)

Hahaha

So you mentioned the surgery for biopsy and then you find out the diagnosis. What treatment did you go through?

Sarah (13:59)

I chose not to do treatment. That was a battle in itself because I say a battle, not necessarily a battle for me, but it was a battle between my medical team because my oncologist was wanting to treat it like it was a grade four scenario. So she was immediately trying to put me in radiation and chemo the following week for the next six weeks, but my radiologist said, no, let's watch and wait.

I had to wait even further for them to gather a group of doctors together and have a conference call specifically about my tumor and try to come to an agreement on a treatment plan for it. And I decided to agree with the watch and wait aspect of it. Yeah, and that's where we're at.

Bri (14:40)

Mm-hmm.

And how'd you arrive at that decision for yourself?

Sarah (14:53)

It was a struggle. I struggled with it a lot and I had to talk to a few people and I think it made me feel more confident knowing that my neurosurgeon was able to remove 100% of the tumor. It seemed like it was pretty half my tumor was calcified. So I call it a rock in my head.

And then the other half was soft tissue. So I think knowing that it was calcified and more of a rock and that 100% of it was taken out kind of made me feel more comfortable like, okay, well, let's just see if the soft tissue made an impact and if the soft tissue will regrow because I don't foresee rocks or calcification regrowing that easy.

Bri (15:38)

And so you're watching and waiting, which is a loaded phrase. I've been in that phase myself. I'm like, what are we watching for? What are we waiting for? What does that phase look like for you? What does watch and wait mean for your treatment plan?

Sarah (15:53)

For this first year, it's been going every three months for MRIs and follow ups with the oncology team. But I didn't realize how much stress and anxiety can build behind each of those appointments. And then it's almost like the longer you watch it, the more you anticipate to go wrong almost.

Bri (16:16)

Mm.

Sarah (16:16)

So every appointment you're analyzing further and further into the details of each scan and that kind of still drives you crazy. Then try not to hyper focus or freak out over the little things and you have to really just trust your medical team a little bit deeper along the wait and watch process.

Bri (16:26)

Yeah.

How do you manage that anxiety?

Sarah (16:43)

I… cry a lot.

Bri (16:47)

You and me both. The shower is my favorite place.

Sarah (16:49)

Yeah, I learned to voice it and communicate it with my husband because for the longest time I took this whole process as a check off, like a checklist. Like I'm just going to check this off, not realizing there's like a deeper impact that it actually does affect my nerves building up to the appointment or like after the scans. Like even just, some scans, I'll get a result back within a couple hours or by the end of the day and then I realized my next scan, it and come back by the end of the day and then I start freaking out like I received it within eight hours last time and now it took them ten hours. So now I'm freaking out there’s more to find, but I realized not relaying this information over to my husband. He's unaware of how much my head is swirling with all these thoughts and different paths that can take, so talking to him more about it has made him help understand and we go on more walks. We made certain creek paths or paths on our property that lead to the creek that if I need to talk deeper about something or just cry out loud or just cry in the rain, which has totally happened, then we'll walk to the, yeah, we'll walk

Bri (18:12)

I love that.

Sarah (18:14)

to the creek. I'll walk myself to the creek and I just, that's kind of what we incorporate now. If we're taking a walk to the creek, we're about to have a deep conversation.

Bri (18:23)

I love that though, because it's like this, this special place that you both have where you can have these conversations and experience these emotions and process through them and, and almost in a certain sense leave them there. I'm a little hesitant to say that because we all know you don't truly leave them anywhere. They are always still inside us, but it's kind of like your safety zone, so to speak.

Sarah (18:52)

Yeah.

Bri (18:53)

I think I'm gonna have to think about like, what kind of safety zone can I create for myself? And maybe that's a challenge for listeners too. You know, what's your safety zone? What does that look like for you?

I love that strategy. How has your relationship with your body changed?

Sarah (19:08)

I definitely listen to it more, which can also cause a bit of anxiety. Like, but I start trying to pay attention to like, I've picked up on cues of oh my jaw clenches because I'm dehydrated or oh my eye twitches because I need sleep. But then you pick up on other cues that may be completely irrelevant. Like, my, why is my hand shaking now?

Bri (19:27)

Hmm.

Sarah (19:35)

You know and then it kind of hurts. It helps and it hurts and you just have to and trying to find the balance of not freaking out like oh is this headache the next tumor is this handshake related to a neurological problem or is my dizziness because I'm a klutz or is it because of the head stuff that's what, I think that's what's troubling about the head stuff. And it's not like a broken arm where you can physically watch a broken arm like heal itself. You know, like your bones probably hurt, but you can see your skin heal itself. You can see your arm move a little better. I think what struggles with brain tumors you can't see inside your head. You don't know what's going on in there. And so then you start correlating too many things to it or

Bri (20:25)

Yeah.

Sarah (20:32)

And some things is beneficial and some things are not.

Bri (20:36)

Yeah, that's so true. And I mean, also with your example of a broken arm, you know, if something starts happening with your leg, you know, it's not related to your arm, right? Like those are two independent things. But with with a brain tumor, because your brain controls everything about your whole body, it can be really hard to tell, you know, what's related and what's connected and what's not.

Sarah (20:56)

Yeah, it is. And then I realized like, I can't say dismissive, but you know, the doctors are like, well, at least it's on like my emotional side, like the right hemisphere of my brain and not the left, because the left controls your body movements, the right controls your feelings and emotions. And so there for a while I'm like, oh yeah, I still have contact of all my phalanges and toes. Like, I'm fine.

And then, I don't know, you kind of realize that maybe I'm not fine because feelings are just as validated as body limitations

Bri (21:28)

Hmm.

Sarah (21:33)

I guess.

Bri (21:34)

Absolutely. What has that emotional impact been for you?

Sarah (21:38)

I haven't quite figured it out yet. I have started seeing a therapist again. Just for I may have felt like I've had some manic type episodes or I definitely forget more often, which I was already forgetful, but there's some days where I'm like extra forgetful.

Or sometimes emotions just hit deeper, one angry person can send me off a ledge of I’m the worst person in the world. Versus letting things brush off my shoulder easily, it kind of like just hits a little deeper. And try not to let, trying to regulate them essentially, not let them be so high or be so low.

Bri (22:13)

Mmm.

It sounds like it's not just your own emotions, but also the emotions of others around you and how that impacts you. Am I hearing that correctly?

Sarah (22:36)

Yeah, yeah, because even just with, I guess any diagnosis you worry about worrying your family. So the more they worry, the more it stresses you out. And I realize it's helped me to talk to someone who's not emotionally connected to me, because if I talk to my best friend, if I talk to my aunt, who's like a mother, if I talk to my husband, then them people are emotionally connected to me where it's going to impact them too if they see me low or confused or angry. And then it just kind of muddies up the water a little bit and not that they don't need to know what I'm feeling. It's just it helps to have a third party perspective that is… not to say that doesn't care about me, but just isn't emotionally attached words like, okay, I don't have to worry about you if I trauma dump on you right now.

Bri (23:32)

Well, it's a different kind of support, right? Like it's not to say that the support you get from your aunt or your husband or your best friend isn't needed or helpful. It's just a different kind of support that your therapist can give or, you know, someone from the brain tumor community or a support group or any other type of support that's out there.

Sarah (23:54)

Yeah, yeah, so I found it helpful to like when I started searching this type of diagnosis on TikTok or Facebook, I found this one girl on TikTok. She helped me go through the motions and answer random questions I had and then I did find another person on Facebook where she's not going through it, but her daughter is. So I stay in contact with her.

And then I had this random coworker that makes jokes about everything. And sometimes you just need someone to turn the whole thing into a joke, or at least that's what the military does in order to comprehend trauma, is we just make jokes out of everything. We turn everything into a laughable matter. So sometimes it just helped me to have that friend that just laughs at me

Bri (24:36)

Yeah, yeah.

Sarah (24:43)

tells me it's silly and make a joke about it all and then I just laugh it off too and move on.

Bri (24:48)

Yeah, humor absolutely has its role in this journey for sure. I've definitely cracked jokes at times myself as well. How has all of this impacted your work?

Sarah (25:02)

We'll see. Thankfully my work is very flexible and understanding. The ability that I have to be able to take care of my appointment, so like during this past year, as far as my co-workers and bosses and like when I'm in the office or out of the office, that's very flexible. I'm not under stress in that aspect, but the part that I am under stress with is the military demand you to be at a certain physical limitation, and a mental one too, but a physical I don't know if limitations the right word but they expect you to be at a physical standard.

And so it kind of stresses me out that hopefully I can get to that standard because I've been, they've been able to give me a year break of meeting any physical standards. So I haven't had to worry about riding in vehicles or jumping off vehicles or firing our weapon down range. I haven't had to worry about that this past year.

But I guess what's stressful is once that year is up, they're going to expect me to do all that stuff again. So it kind of stresses me out.

Bri (26:13)

I imagine being in the wait and watch phase kind of compounds that as well because it's temporary on the work side about the accommodations. But it's also, you've got this big question mark being in this wait and watch phase of what's the next scan going to show and what's the impact going to be of that as well.

Sarah (26:35)

Right. Right now, I've been fine with not meeting those physical standards, but at one point I'm going to have to without hesitation.

Bri (26:47)

Yeah. If you could sit down with the version of yourself two, three years ago, your pre-diagnosed self, what would you want to say to her?

Sarah (26:56)

Probably just listen to my body.

Bri (27:00)

Pretty simple, huh?

Sarah (27:02)

Yeah, and I probably would have changed my primary care provider years ago. My friend was trying to get me to change my primary care years ago and I never did. So I now have changed my primary care doctor to the one who found the rock in my head because his office was just so nice. So I guess I'd tell myself to go find a really good doctor who cares and can make time for you and who listens. And then not just a doctor who listens to you, but you got to listen to yourself.

Bri (27:40)

I love that. It's both and. The doctors listen to you, but you're also listening to yourself. Sarah, you got so many good nuggets to share. And of course, you know, as you shared, you're still kind of in it right now, but how has it rewired your mind so far?

Sarah (27:54)

I guess just taking every day as it comes and not let the big picture drown you out. You know, and I think one of my biggest perspectives is I feel like every pain in people's lives has a purpose. Trying to find that purpose in the diagnosis to be able to help others or be a part of a different community. Find something that's impactful outside of my job. My phrase is pain paints purpose and I feel like everybody's pain is intended to mold them or mold other people and there's you just have to believe there's a there there is a purpose behind it because there's a purpose for our our life and we're not put through this trauma just because God hates us or somebody hates us like we're put through it to fight for a reason. We wouldn't have, we wouldn't be fighting it if he didn't think we were strong enough to make it through. And once we have that sword, you know, that battle sword of, yep, I've made it through, I've been there, done that, I got the scar. I just don't think it's right. I feel almost selfish just holding on to that.

Be like, I'm not gonna share this with anybody else. Like I think it's just more beneficial to share because you just, you never know like how many other people you may be able to help with this. This is the intention behind the pain is to paint a pretty picture out of it. You know, and I can't say pretty because there's gonna be ugly parts to it. But just paint it for the world to see and

Bri (29:14)

Mm.

Sarah (29:43)

to know and to also learn and grow from it.

Bri (29:48)

Yeah. What have you learned about your purpose?

Sarah (29:51)

It's still learning in progress, but doing things like this helps. And then I've, I can't say learned with this, but learn to take care of myself, learn that my life isn't just my job. That my life is at home too, my life is part of my family, part of my friends, and to make more time for that.

I actually started making a list on my fridge and separating things that Sarah wants to do that starts with me and ends with me versus things that involve other people. So I kind of learned that I used to stress myself out with other people's lives and issues because I care and worry about them. But then I involve myself too much where it drains me out. And so now I'm trying to find ways to fill my cup back up that makes me feel good about myself and what I'm providing to other people even though it's things that's still helping other people, it like heals me a bit knowing that I can be there for someone, I guess. When I say starts with me and ends with me, it's like no other trauma is causing me to go do this. No one else's trauma, not my trauma, is causing me to do this. I'm doing this out of my own initiative. And then it ends with me, because I'm the only reward at the end, sort of. It's kind of like...

Bri (31:16)

Mm. Mm-hmm.

Sarah (31:29)

I'm like, it's just pouring back in to my cup. Like what I'm doing is pouring back into my cup. And like one of those things is this podcast. Like I just, this is something I took initiative on and nobody's gaining benefit. I say nobody, hopefully the world does, but it's not like driven by my family telling me to do this or by my friends telling me to do this. Like, no, I'm doing this because I want to.

Bri (31:34)

Yeah.

Sarah (31:59)

And I told the therapist this and she goes, but people are still benefiting from it. Like you're still helping people. like, I know, but it heals me at the same time. It's kind of, I'm not really doing this out of a selfish reason. just, I don't know, just to not have anyone else push me because of.

Bri (32:09)

Right.

Sarah (32:21)

certain necessities.

Bri (32:23)

Right. It's like those other benefits are on the list, but they are second, third, fourth, fifth, sixth, and so on to the benefit that you get out of it. As you're describing this list, I...

Sarah (32:34)

Mm-hmm.

Bri (32:38)

I'm imagining listeners being like, I should make a list like this and add it to my refrigerator. So that's another really awesome strategy to pass along. I love it so much. The other thing that I keep, like I keep getting this image of a compass in my head. It's almost like as you're taking these steps and finding these strategies for yourself, you're realigning your compass for yourself aligned with your own values, your own direction, your own desires, your own goals, your own definition of life even. I don't know why that compass is like coming to mind in all of this, but that's kind of what's popping up visually.

Sarah (33:20)

That's a good way to put it because I guess it's a matter of just trying to find me because you start losing yourself in the everyday mundane. I'm work. I'm family. I'm kids. I'm pickups. I'm drop offs. I'm the groceries. I'm the build taker. I'm a wife, I'm a mom or a stepmom. I'm a sister and I'm a daughter. Then those are just roles and you kind of just have to push those aside and be like, but who is actually me? Who is the person that people fall in love with and like hanging out with? Like, that's what I want to find.

Bri (33:55)

Yeah.

It's a rediscovery that's happening. That's really cool. That's very cool. Well, Sarah, thank you so much for sharing your stories, your stories, your story and stories.

Sarah (34:10)

Yeah, there's plenty of them.

Bri (34:12)

If listeners want to connect with you and learn more about your experience or maybe they've got a similar diagnosis or just resonated with something that you shared and want to get in touch. Where can they find you?

Sarah (34:28)

I'm on the Faceplace or Facebook.

Bri (34:31)

I love that. I feel like it should be officially renamed Faceplace.

Sarah (34:39)

Yeah, I'm definitely, I’m on the socials, the Facebooks, the Insta and the TikTok. I share more about my brain diagnosis on the TikTok because it's not related. It doesn't have that many military people on there.

Bri (34:56)

Well, I will include links to all of those in the show notes. And again, Sarah, thank you so much for joining the conversation, for being vulnerable, for sharing aspects of your story and your experience and journey that we just don't often talk about very often. I appreciate it.

Sarah (35:19)

Thank you for making it possible.

Bri

Shortly after Sarah and I recorded her episode, I received an email update from her. With her permission, I want to share excerpts from our exchange not only to give an update, but because I think some of our ideas might help you.

Sarah wrote. I have had a reoccurrence on my scan this week. Going in for another surgery soon then start chemo and radiation this time. Feel free to share any tips or tricks to rock through it.

I responded in part with…

Of course, everyone processes and makes meaning in different ways. Some of the things I've experimented with this year as I've faced my recurrence are:

A note from my future self on my bathroom mirror, dated one year from the future.
Choosing exciting places to eat after each treatment appointment. It gave me something to look forward to on treatment days and just a small way to celebrate each little win. I intentionally picked places I don't go to on a regular basis, but also not extravagant ones either.
Because I don't live near the closest people in my support network, they struggled with not being able to visit or bring a meal or clean my home or all the other things people want to offer in times like this. When they offered, I asked for food delivery, massage, and travel gift cards. The food delivery for more immediate use, the massage for mid-term replenishment after the treatment was complete, and the travel cards because that gets me back to my ultimate life goal and helped me feel like there will be a day that I'll be past all this and back to what I love. This approach helped both of us out (the gift giver and me).
When my family did want to visit right away, I communicated that I wanted to spread their visits out. When I have visitors from out of town, it's hard for me not to feel the responsibility of being a host to them, which meant I wouldn't be able to rest like I needed. I communicated this need with them so they understood that it wasn't that I didn't need them, it's just that I didn't need them all at once. Just having the conversation with them about the pressure I place on myself to host reduced that pressure and I was able to enjoy their visit more.
With the exception of restrictions, I tried my best to stick to a routine. Even though I didn't have to, I made sure I still set an alarm every morning and got up at the same time as if I had things to do. I created a list, so when I felt the draw to crawl back in bed, I'd be able to easily look down the list and find something to occupy my time without having to make a ton of decisions. Some of the things on my list were read a book, put a puzzle together, go on a walk, take my dog to the dog park, and a whole list of free things going on around the city.

The main theme I'm recognizing as I write this out is that I made a lot of decisions in advance and identified a variety of options so I could easily implement whatever I felt in the moment without facing decision fatigue. Of course, there were a ton of things that I couldn't decide in advance because I didn't have the information to do so, but where I could, I tried to. Not only did it take some of the pressure off, but it gave me something to look forward to.

I'm in your corner rooting for you. I'm not going to say chin up or you've got this or everything happens for a reason because that's not always true or useful. What I will say is that, however you experience this chapter of your journey, it is okay. There will be ups and downs. You'll experience a whole range of emotions and they're all acceptable. Sending you a whole slew of things in advance of when you need them:

A hug when you're crying in the bottom of your shower
A hand to hold when you're fitted for your radiotherapy mask
An ironic laugh when you unknowingly choose a podcast about death and dying when getting your treatment (even though it's supposed to be a comedy podcast)
A synchronized deep breath when your mind is spinning with all the 'what ifs'
A listening ear when you're angry with the cards you've been dealt
A safe space when people say things they think are helpful, but definitely are not
The ability to sit with and process through any emotion that shows up
A sucker punch to the person who says you're so strong, resilient, and inspirational
A living room dance party when you get a clear scan

I was thrilled when Sarah responded to share what she’s doing too.

I've started buying myself flowers as I get done with each appointment to make me smile. I started to stock up on food and am going to meal prep some easy soups to freeze. I also created this family app to share with the folks that can help with transportation to appointments so I’m not bombarded with questions or too many guests at one time. I've updated my to do list on the fridge to be more home focused, like re-painting the bedroom.

I heard a song recently that I keep repeating the quotes "keep breathing, don’t lose focus, I’m not a diagnosis." It gets me through each day, each hour.

Sarah, on behalf of all listeners, we’re sending whatever you need in this moment and wishing you all the best in your treatment and recovery.

Bri (41:04)
Thank you for joining me for another episode of Rewired Minds. 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. Whether you’re a patient, survivor, caregiver, family member, or friend, visit rewired-minds.com to learn more about being a guest on a future episode.

This podcast is a one-woman labor of love and it’s an honor to bring it to your ears and connect the brain tumor community. If you enjoyed this episode, please take a moment to rate, review, and share with someone who might need these stories. 5-star reviews and sharing really make a huge difference in keeping this going!

I'm Bri Salsman, and I'll be back next time with another life changing brain tumor story.