The Power of Three and Twelve: Jason’s Caregiving Blueprint

Jason Binder, the founder of Aware Coaching, is a dedicated husband and father of five. His caregiving journey began unexpectedly when his wife, Tracy, a lively marathon runner and mother, received a diagnosis of glioblastoma, a terminal brain cancer. This news came just weeks after they had moved into their dream farmhouse. Drawing on his background in pharma and his experience as a change agent, Jason quickly mobilized a support network, leveraging both his professional connections and the strength of his local community to ensure Tracy received the best possible care. His story is one of resilience, as he navigated the emotional and logistical challenges of caregiving while maintaining a sense of hope and purpose for his family.

Throughout our conversation, Jason shares candidly about the toll that long-term caregiving has taken on his mental and physical health, as well as the impact on his children and marriage. He discusses the importance of building a strong support system—what he calls the “three and twelve”—and the need for emotional resilience, especially for men in caregiving roles. Jason’s commitment to advocacy extends beyond his own family; through Aware Coaching, he offers free support and resources to other families affected by brain cancer, aiming to change the narrative around male caregivers and reduce the alarming rate at which female patients are abandoned during serious illness. His story is both inspiring and deeply human, offering valuable insights and hope to anyone facing similar challenges.

About Jason:

Jason Binder is a caregiver, advocate, and founder of Aware Coaching, a free support service for families impacted by brain cancer. His journey began when his wife, Tracy, was diagnosed with glioblastoma in 2022, thrusting him into the uncharted territory of high-stakes caregiving while raising five children. Drawing from his background as a pharmaceutical executive in oncology, Jason blends professional expertise with lived experience to help others navigate the emotional, relational, and practical realities of cancer.

Through Aware Coaching, Jason offers coaching and AI-driven tools like the GBM AI Agent to provide patients and caregivers with real-time answers, hope, and connection. He is also the creator of BrainStorm Health, a substack platform using anonymized caregiver and patient conversations to identify unmet needs and influence care innovation.

Jason’s work is rooted in a belief that no one should face a brain cancer diagnosis alone — and that emotional resilience and relational health are as essential to quality of life as medical treatment. He speaks candidly about the toll caregiving takes, the importance of community, and the need for better integration of patient and caregiver voices in research, clinical trials, and healthcare policy.

Thank you to our sponsor: CareScout

Transcript

Natalie: 0:02

Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver. Podcast. On the show, you'll hear caregivers confessing the good, the bad and the completely unexpected. You're guaranteed to relate, be inspired. Lead with helpful tips and resources, and, of course, laugh. Now let's get to today's confession. Hey Jay,

JJ: 0:31

well, hello

Natalie: 0:31

Natalie. Good morning. How's it going? I'm delightful. How are you I'm just swimming right along. I'm jumping into it because, honestly, we've got an amazing guest, and we have

JJ: 0:43

a boy you'll be to do my voice. It's a boy.

Natalie: 0:46

It is and it is a boy, and he is pretty amazing. I had the opportunity to meet again. This name is near and dear, because my husband's name is Jason. So clearly Jason and I were meant to be best friends, and had, here we go again. Had the opportunity to meet Jason a couple of months ago, and he is just this powerhouse caregiver. And love him, and his story is going to speak to you. And this is, this is not an easy story. He's, he's still caring, is my answer. He is still caring, and I'm not going to give it away. And, JJ, please do not give everything away in the bio. Okay, like, we got to allow people to have something interest, like, what, and so. JJ, I want to, I want you to tell everyone about our newest bestie, Jason binder, sorry,

JJ: 1:37

I had it, Jason, I'm just saying, all right, I'll cut out a sentence so I don't give it away, because Natalie says I give everything. Does give everything. So I know. So today we have with us Jason binder, okay, guys, he is a caregiver and advocate, and he's a founder of aware coaching, and that is a free support service for families impacted by brain cancer. So we will have that in the show notes, because I want you to remember that he's going to tell us about it. His work is rooted in a belief that no one should face a brain cancer diagnosis alone. His story and Natalie doesn't want me to give it away, so, but I am going to tell you a little bit about six weeks after moving into his dream farmhouse, he and his wife Tracy, had spent years building his life changed forever. His wife a healthy woman, basically, she's getting,

Unknown: 2:30

hey, I'm not gonna lie. She is a beast.

Natalie: 2:32

I've met Tracy and she could,

JJ: 2:34

she's, she's amazing, okay, she's, she runs

Natalie: 2:37

the Boston Marathon. I mean, like, that's all I'm gonna say. She ran the boss America, okay, like

JJ: 2:41

that. That was it. So days later, they were staring at a scan that showed glioblastoma, which is a terminal brain cancer. But his mission now, and because I skipped a big sentence, his mission isn't just to help his wife thrive. It's to be an example to his kids, of a man and a husband who doesn't run. And I think that's really important, because we're going to talk about that, about that history of women who have been diagnosed with glioblastoma. I didn't give it a while, Jason, so I'm excited to have you here, because you're my neighbor. We just found out you're like, a street over, so I'm really excited. Thanks for being here.

Unknown: 3:22

Yeah, thanks for having me, and look forward to you bringing lots of sweet treats to our house soon.

Natalie: 3:29

Apparently, know that JJ is a baker, because I'm going to tell you she is a baker and so like I am not I go to fresh market, who can sponsor us, but I go to fresh market and I go to some of my favorite bakeries because I can't cook and I just own it so. But this is not about me and my lack of abilities, but this is about Jason and so, so happy to finally have you on the podcast. I think this is going to be great. So let's start off. Let's start from the beginning. Give us a little bit of history about you, where you're from, and, of course, how you and Tracy met, and you've got, like, a slew of kids. I mean, you got a whole basketball team, although you although I'm not sure why you didn't stop and hit the sixth man. I'm not gonna lie to you, inches, good. So tell us a little bit about your fight, your story.

Unknown: 4:25

Yeah. I mean, I grew up in Maryland. I'm an only child, and in high school, there was this girl who was sitting a few bleachers up from me, and I had the amazing pickup line of how my sweater and her socks matched. You know, that was 33 years ago. And you know, we, we grew up together. We experienced a lot of life together. Went to college together, got married after college, you know, she did. She's a doctor. To physical therapy. I started a career in pharma, traveled the world and lived in London for a couple years.

Natalie: 5:00

Okay, you're cool. I'm going to be in your all's back pocket. Like, when did you Okay, wait a second, when did you say, Tracy, start dating? Like, what was it

Unknown: 5:09

like? 1990 1992 we met. 1993

Natalie: 5:13

at least, started dating. You're gonna have to tell me what year that was in high school. I have no clue about your

Unknown: 5:19

junior year

JJ: 5:22

high school. Your high school sweethearts, your

Unknown: 5:25

high school sweethearts, you know, like anything, life bumps in the way of some of those things pristine and perfect. But you know, we've been through lots of life. Our parents divorced early in our relationship. My mom had a massive stroke when I was 21 and never had aphasia the rest of her life. My dad died when I was 31 my mom passed away during covid. So like we've had lots of life that we've had to go through, even in our own marriage, you know, I did. I did plenty to try to blow it up, and through the grace of God, you know, transformed me and then allowed our marriage to become something that we were actually, you know, coaching other couples to go through really hard times where trauma and grief and loss was like the core aspects of recovery. So we were doing that for a really long time. And, you know, I was in pharma. I've had 25 years of, you know, big pharma oncology, you know, powerhouses, where I helped them transform the way they use data, digital and like, you know, we call it AI now. We call it machine learning. We call it Big Data. We call it predictive analytics. Like I was at the forefront of a lot of those things to help us optimize the way we're in clinical trials. So, you know, all that being said, you know, we went through covid, we built our farmhouse, you know, we moved from California with three kids to Pennsylvania, we picked up another kid, and then moved in North Carolina and felt called for adoption while we were building our 15 acre homestead. You know, I've got cows and chickens and goats and you know, you name it,

Natalie: 7:01

skipping over so many good things. Jay's killing

JJ: 7:04

He's killing me. So tell me about the how many, how old are your kids now? You got five. So how are we?

Unknown: 7:11

Our oldest son is 17, and we've got three girls, 1513, just turned eight last week. Then we have a four year old adopted son. So we're a multiracial family, and just, you know, I'm gonna have us. I'm gonna have a son whose birth dad was 652, 50, and I'm not, yeah, you gotta watch a YouTube, because I'm not gonna lie to you, I'm not feeling like you're 652, 50. I'm not gonna about 10 to 12 inches less than that,

JJ: 7:44

your house is like fun. That's why you needed, yeah, acres, that is, let's use that,

Unknown: 7:50

yeah? Well, we need it because we run right wide open. Obviously, Tracy being a marathoner has inspired our kids to be phenomenal athletes. We've got triathletes who are at the national level. We've got a USA G, a most level nine, you know, eighth grader, and then we try to figure out what to do with the last two kids when we've got enough time for life. That's hilarious. They're all upstairs right now. Otherwise there'd be, like, multiple interruptions and screaming in the background,

Natalie: 8:19

you know. Let me ask you this, because we didn't talk about this. I appreciate you sharing. You moved down because you're in North Carolina, yes, when your mom had a stroke and you said she, did you participate in caregiving at that point? I mean, you're an only child.

Unknown: 8:35

When I was 21 years old, I was a junior in college, you know, I've learned a lot about how to talk with children in traumatic events based mainly because my my dad did the best he could, but sugar coated everything told me everything was fine, and it never was so like that probably was one of the major, you know, traumatic experiences in my life, And I did it, you know, in the context of being a young adult in college. So I didn't really experience caregiving, but I'm sure it's what contributed to his early death. He didn't care for himself.

Natalie: 9:15

Oh, he did not care for himself. And you know, if you don't mind, like, just chat a little bit about it, because it sounds like, I think, like many parents, they try to protect children, depending on the family dynamic, they try to protect them. I could imagine you're you saying your dad sugar coated it is probably just didn't want you to worry in his mind.

Unknown: 9:35

Oh, yeah, it's protection, yeah. But it's not necessarily healthy, right? It's a we have. We all have a innate desire to avoid pain at all costs. I took away that I would be appropriate and clear and truthful, and then let them help, kind of determine the drip of information, the depth of. Information that they wanted to hear. So, you know, from the very beginning I was clear about, you know, it's a brain tumor. What does that mean? I'm not really sure. Is mom gonna die, not not anytime soon, and, you know, so I kind of be really clear about, you know, it's aggressive, it is rare. But, you know, I'm doing everything my power to to get her all the best options possible. And then they saw, you know, the church get involved with praying over her. And like, you know, it was, it was a village affair at that point. But, yeah, I've always tried to be really thoughtful about including all them at the right level. I've read even recently that, you know, the five to seven year olds, while they understand the least. They internalize the most. Yeah, they project it as their own fault, which is, which is heartbreaking. So that prompted me to have a few more conversations with them, now that we're at like, recurrence number two, treatment plan number you name it, surgery number four, plus,

Natalie: 10:59

well, I'm going to pause you though, because I'm going to say you got to start from the beginning, because you just jumped right into the middle. Yeah, and I want to bring everybody kind of up to speed. We talked a little bit about your your mom having a stroke, your dad caring, not, probably sharing with you the full picture of probably the intensity severity, just because of protection mode,

Unknown: 11:24

yeah, in his inability to process like, I remember, there was a moment where I asked him how he was doing in the car, and I was like, yeah, if it was my is my bride, my love, I would just be heartbroken. Are you doing okay? He's like, I don't want to talk about it like it shut me down to like, as a man not connected to your feelings or not willing to go there because it just hurts, too bad. That's what I experienced. And then, you know, I probably lived that way for a very long time, until I figured out how to engage those things at a healthy way, in a healthy way,

Natalie: 11:56

right? Yeah, so life is going along. And you did mention that you all had some bumps in the road, some bumps that could have really derailed your marriage, and could have gone separate ways, and you all would have been completely different paths, but you and your wife were able to work through that, and not only work through that, but come out on the other end saying, We want to help other people So it really doesn't happen to you, or to allow you to know you can get past this, like absolutely have to destroy your marriage,

Unknown: 12:30

absolutely, you know, we were I was getting ready to exit corporate to do that full time with Tracy. I was leading groups, building curriculums, coaching several couples. She was doing the same master classes. The people we're working with are getting ready to to leave the big ministry. They were part of the start their own with us as their right hand. And this is all in, you know, sexual betrayal and that type of destruction and marriage, which most people would say there's a biblical right to have divorce, right? So like to then work through that to a point where we're restored and healed, and then to take in, Wade back into that muck, created a huge amount of emotional resilience to the place where we were praying to be such an impact in the world that the enemy would have us on his top 10 Most Wanted? Oh, I

Natalie: 13:22

love that. I love that you're trying to be on Satan's top 10,

Unknown: 13:27

and then she got a brain tumor Well, and that's the thing.

Natalie: 13:30

You know, it's funny how God works in your life. Is what I'll say. It's funny how you know and you don't understand why you have to go through certain things. Let's talk about Tracy getting the diagnosis, and what kind of the build up and how you're observing, because at this point, you all are pretty in tune with one another. At this point, you've done the work to get through some pieces and then to support other people. And you guys are thinking, we're sailing, man, we got the wind behind our backs. Yeah,

Unknown: 14:00

I was really angry that we got a brain tumor. After all, we had gone through to recover what I figured was gonna be that's gotta be the Paramount summit of consequence and pain, and it was literally the building blocks to I probably can hold my family without going south and blowing us up again, right? So, like I say that that recovery process created the foundation for me to be present and to not hit the road and think that's a better option. So, yeah, leading up to that headaches, she went to see her primary care that said, Take more ibuprofen, more headaches, you know, went to our friends who are eye doctors to see if they could see something on a retinal scan. More headaches. I went to church and brought a new family to church with us. She went to the ER and got a CAT scan. They found a four centimeter brain tumor. You know, we were kind of worried, but now. Really wanted to allow that into our, yeah, into the foreground, and then, you know, immediately I'm telling the kids, Mom's got something going on. I got to go. We don't have any family in North Carolina. They're all up north so I probably called one of our family friends, and they came and hang with the kids while I went to be with Tracy. We had to get into another hospital that had an MRI because she was at like, a local just, er, basic, you know, capabilities. We knew people worked at the bigger hospital. They started pulling strings. They did the MRI, you know, tell them more about the tumor. And then that's when the the people at that place had the audacity to suggest we could do surgery tomorrow. And I was like, so How much experience do you have doing these surgeries? Oh, I've been doing about six months, and you know, the scar will be from, like, here to here. And, like, I was like, Yeah, I know where I'm not going to be doing this, yeah. And

Natalie: 15:55

I'm going to pause you for a second, because I got to take a break now that we're back on track, because that way I can get car, because I got to hear the story and JJ has not heard it, so we'll be right back

Unknown: 16:08

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JJ: 16:40

you All right, everybody, we are back here with Jason binder and Natalie is she says, JJ, hasn't heard it, so she wants to hear the story. So I'm ready, Jason, because you've gone into this small hospital and they've told you all they can do, basically, like in 24 hours to save your wife. So I'm a little nervous about this. So give me the story

Unknown: 17:01

well, and that's not a typical for brain cancer. You're in shock, right? Or she's 4344 marathoner like, you know, she doesn't eat junk, she's she's not sedentary, she's, you know, there's not a family history like this is not supposed to be happening. So, like, when you're in shock, a lot of people and she was like this, let's just get it done. I wanted those scheduled. I'm like, No, never, because she just wants to do it. And a lot of people with glioblastoma die in their local hospital because you need specialty care. So I'm in pharma. I know that there's Duke, and I know that dude's huge. I also know that Wake Forest is a national cancer institute center. And then I obviously at AstraZeneca, my my customer base was the senior executive team. So CEO, head of r, d, so like head of oncology commercial. So I'm just sending out emails to all them. Who do you know? Who should I talk to? Yeah, and within, you know, within no time at all, I'm connected to all the top brain neuro oncologists at Duke. And then within our church community, we had someone in one of the small groups that was a fellow with the very well known and reputable brain surgeon at Wake Forest and within 24 hours, we're at the end of that surgeon at Wake Forest schedule, and he spent an hour with us. Wow, like, we don't know anything about what the tumor really is. He's just, like, explaining all the things about what we don't know. And like just sitting with us. The Duke experience was a little bit different, not as like, able to sit with us through all that little more of a bigger system and machine. And I'm not, I'm not saying that that's a bad thing. It's just not what we needed at that time. We needed someone to, like, sit with us every every moment, and so we decided to get surgery and care at Wake Forest, which is about 30 miles from our house, we had surgery. We were told that they'd be able to diagnose this, the cancer on the bedside. They couldn't just so we she was done. We waited for them to tell us what the diagnosis was. You know, I jumped back into life and took my son to Sarasota for his triathlon. And when I got back after our plane was canceled and we had to find a someone to drive us home, that around midnight, she was throwing up, and this is about three to four weeks later from the first surgery. So I took her the ER, and they had grown back. Wow, completely

Natalie: 19:42

Did you know at the time it was glioblastoma? No, they just knew it was something, a tumor in the brain that looked like

Unknown: 19:50

a blue cell tumor that had what they call peanut features. You have to put a chat link in the description for what that is. Yeah, it's a technical word, but typically it's like, young boys get this type of brain cancer, and not grown women and and then there's no, there's no, like, big data on it, there's like, use cases, and it's like, nine months of prognosis. But we didn't know that. And then after the second resection, six weeks later, they dove straight into radiation. They knew they had something they couldn't mess with, but we were still waiting for the diagnosis, even into treatment. And obviously you want to know what you had before you treat it. That's why they waited. But by waiting, ended up having a second resection. So that's like, you know, double trauma. So, like, I remember specifically, like, we got through the first one, I still felt good. This is, like, what happened. Imagine the biggest balloon popping in the world. You don't, you can't, you can't really, like, pick yourself back up easily after that.

JJ: 20:52

Are you still working during

Unknown: 20:54

working full time? You know, I've got a very high visibility role. And at that point, I was I told them what was going on, or, like, you know, do we need to do? And I was like, I probably need to not work for a bit. And they said, Okay, did you,

Natalie: 21:10

did you take FMLA? They

Unknown: 21:12

said, Jason, just come back when you're ready. And they didn't go on any of those roads, because they knew that when you start this in the US, when you start those clocks, right? You can't unstart those clocks in terms of short term disability and FMLA, they're like, you know, you just tell us what you need.

Natalie: 21:30

That's so interesting, as a big pharma that company, it gives you a different feel, because you don't hear that as often, you know, if you really think about it. You don't hear that

Unknown: 21:42

in that moment. They're very gracious. Yeah, they didn't have. They didn't have to be, right? They didn't have. They could have just fell the rule book, which a lot of Big Pharma would do. But, but in this case, it was a blessing to allow me to essentially, I took three months off of work, and that was all during radiation. And remember, we had just moved into this house, and we're 800 feet off the road, we didn't even have a driveway, and we're supposed to go to radiation, you know, the Wake Forest, back and forth. And then someday, one day, a big, giant dump truck showed up with gravel, and just started laying gravel and laying all the rock. And then someone showed up with a skid steer and started grading it out. And it was just the small groups from church this, deciding to see a need, to meet a need, and all of a sudden, you know, we've got a driveway

Natalie: 22:31

that that says so much, though about your team. I want to back up for a second, because you know, you and your wife are going through this, and you've got the nuggets, baby nuggets, your kids, and you had already adopted the fifth, yeah,

JJ: 22:49

yeah, let's, let's be 18 months at that time. You said, 18 months

Unknown: 22:52

at that time, 18 months old, and mom, his mom, got sick, and I was trying to get him into preschools. And he, you know, whenever you go into adoption, you enter trauma, and he was asked to not come back to three preschools,

Natalie: 23:07

yeah. So he had some, he probably had some in utero stuff,

Unknown: 23:12

I imagine so, because we got him when he was 36 hours. So it's not like there's a lot of trauma between birth and seeing us, but like, if, you know, imagine, if you guys are moms, like you're carrying that child and loving it every moment, just by knowing it's there, and like you're doing the things that are gonna make sure that that child is coming into the world with every possible you know, opportunity. Contrast that with someone who doesn't want a pregnancy but decided for to do adoption. Praise the Lord. Maybe it isn't doing all those things, maybe this maintaining life every day, you know, yeah, so, yeah, so that that transmits. And then, you know, we've had to, I've had to deal with that while keeping Tracy afloat and the kids afloat. And

Natalie: 23:54

that's, I think, that's my thing, is you've got five children, and they're all under 18, and you've got an 18 month old, and you're trying to figure out like, and get to appointments and get to this, oh, and you don't have any direct family. You have church family. And so did you and Tracy talk about like? What was the conversation about? Like, respectfully, and I'm going to say this because this is a clean podcast, but how the hell are podcast, but how the hell are we going to do this? Like, how are we going to raise the children get you and you have not a little cancer, you have a big cancer, as in, in the head, the worst one, you're the winner of the worst cancer. And

Unknown: 24:39

give that away. I don't know that we had a conversation. I just went in. We just went to action. We're doers. Our whole life's been doers. Move across move across world, Move cross country. You know, the Spirit led us to North Carolina, yeah, without a job, you know, in a window or, like, I could get a loan closed with a. An active employment without being employed. So like, yeah, the church community, the school communities, the gymnastics community, the preschool community, the triathlon community, essentially, there was a few moms are like, what do you need? I'm like, I think I need food. We didn't have an extra driver at that point, my kids need to get to school and need to get home. They need to get to practice, they need to get home. They'd need lunch packed. And then it just happened. People, the women, organized and made it happen. And Tracy was really mad that I was doing all this and she wasn't involved in the text strings and things like that. And I was like, you just need to, you know, take treatment and recover and I'll figure out the rest. So, yeah, that's how that worked.

Natalie: 25:52

You know, I find that I think it's so interesting. You know, Emily, our younger sister, worked for care agency for a window of time. And she always said that the men made really good caregivers, and that's because they, from a logistical standpoint, they just kind of like there were things, that there were skill sets that you had, that men have, that are a little different than women. And she would always say that. And so let me ask you, do you think your past experiences and your skill set like think about your work skill set and your strengths areas? You think those helped you in trying to navigate? Because the one thing I will say is that you've built your team around non blood relatives, and everybody has just said we're going to put our arms around you and do that, but tell me about that skill set. What do you think the biggest skill sets you pulled on?

Unknown: 26:48

Well, my entire career in pharma is change agents and transformations, so I see a problem, and I would tell people in interviews like, what's your what's your superpower? And I'd always use the example of Russell Crowe and a beautiful mind, you know, without all the illusions, well, maybe I have some, but like, you could just see the solution light up. Yeah, yeah, I can do that. I don't know why. That's one of my gifts. Like, I can see the problem. And then, as a person of action, I just go, and then it's around. Like, if you're if you're willing to be part of the solution, then I'll ask you what your gifts are, and then I'll put you to work and get out of the way, because I know everyone's hearts in the right place. So like, I don't have to worry about intention. I don't have any other choices but to lean on these folks, and I believe them to be people that we knew through relationships. So I was trusting in them, and I had got to know them, like personally through small groups or just sharing life in school. So I was willing to just, you know, let that, let those things go and let, I mean, let the church activate.

Natalie: 27:57

It's interesting to me. J I feel like you're gonna ask question. Go

JJ: 28:03

ahead. She knows. So I hear you saying it's interesting, but I hear Yeah, exactly that. Nellie says that this whole group around you, it's the south Jason is what it is like. We're just like that. We're those people, like, we're bringing you a pitcher, a sweet tea and a cake, and then we're like, let us take your kids to the pool. So we're those people, but I hear that, but also these are, like the first two you've had two surgeries. So my question is, but how long has How long has Tracy? When did this start? What year did this start? Because I'm trying to

Unknown: 28:36

get my 2022 22 Okay, so like radiation and all this, all this initial surge happened in that time through June or July of that year. It's all the way through the summertime well, and

Natalie: 28:50

I'm gonna, this is where I'm gonna take a break right here, because we're gonna pick right back up. We'll be right back.

Unknown: 28:56

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JJ: 29:11

so we're, we're back, and Jason, we've, we've talked about, first of all, his team. He's got a great team going on and but the timeline for this February 22 to June of 22 is really these first and second recurrences, or first first diagnosis and then recurrence. So take me through that timeline, because we're Tracy is still she's active. She's here at the house, there at the house with you. She's not here at my house. But tell me what's going on, like, tell me how this

Unknown: 29:42

progresses. Yeah, so after the second surgery, maybe the end of March, we started brain and spinal radiation. So five days a week, she ended up doing 37 rounds of radiation, which is brutal. So we're driving to Wake Forest every morning from Greensboro. And coming back and the and it wrecked her appetite and her taste. She tasted metal. She can only eat two things again, one of the Southern moms brought her gluten free biscuits from the local farmers market. This lady was doing a side hustle and did everything gluten free, and Tracy's gluten free, and I'm gluten free. So, like the biscuits tasted good. She ate biscuits, and then we, she only likes hamburgers. So we had a hamburger at this one restaurant every day for, I don't know, two months. And then she'd go home and pass out, and I would pass out, and then, you know, I'd see a friend over like we had a tree down on the properties just over here with his chainsaw cutting up the tree, and I'm too tired even go out to say hi. You know, feel guilty that I can't do it myself.

Natalie: 30:50

It's interesting that you say guilt. Let me ask you this. And I hope this is, well, I mean, this could come across as stereotypical, but, I mean, this is what a lot of I think about my husband, my husband did not, does not consider me his caregiver. He considers me his wife. And I think there's a lot of things around that, and it's not because he doesn't care about me or whatnot. I think it's a lot of how he was raised, in traditional roles and masculine roles. And what does masculinity really mean? Tell me about some of the emotions, thoughts, feelings, that you're going through at this time, because, I mean, you're having to give up a lot of control. You're sitting there saying, I didn't I didn't even feel like going outside and telling the guy, thanks for doing it. I just do this. You're not at the end of this journey. You're right in the middle of it. And so if you think about it. And this happened with our mom, too. If you're not careful, you'll wear out your help. And so tell me about some feelings, emotions you're going through. And then then I want to ask you about, how are you keeping the help?

Unknown: 31:55

Great point. It's something that I've been thinking a lot about recently. I i I say thank you a lot in that point, in those days, how appreciative I am. I try to keep people aware of what's going on, because I'm getting, you know, I had like 13 text strings going and like updates on social media, and I kind of consolidate all one place, you know, I've got her parents who are far away wanting to know all the details every moment and like, gotta measure what you gotta measure what you say about brain cancer, because people are gonna grab on to every little detail and assume the worst, right? So I held a lot inside just for me to manage and hold. And then I would give a little bit to details here and there as they were validated. Because, you know, there's time between getting a an MRI report and seeing the doctor, then knowing what you're going to do, yeah, getting bits and pieces out gratitude. And then Tracy and I, like she, she wanted to go to church every Sunday, so they saw her just worshiping at the front of the church. And, like, I can't tell you how many people have told us what inspiration she's been just seeing someone who's given that, you know, really bad hand and just, you know, not wanting to stop at all. So I think that, I think seeing her was probably the inspiration. I don't I don't feel like I thought a lot about handing things off as much. I just remember that one time when, like, another man's helping me. I should go out. I should go be part of that, and I just couldn't. So I remember that one specifically. So then at three years, you know, most people don't get to that point. We rented out a whole party, you know, a whole place, and had a party and invited all the people who had poured into us and just loved on them, and, you know, I toasted them and let them know much we cared. So, like, it took us three years to kind of give back or acknowledge them in a formal way, and so we did that. But like, it's, it seems more challenging now to get the same amount of momentum in care. And I asked myself, like, did we burn them out? Did Did people just like, feel like they're on to something else? It's very isolating to be in this space. I talk a lot about, you know, I can't remember last time was invited over for a barbecue. It's been years. Maybe it's because we've got five kids and, like, they, know, with it or tsunami, like we're not, we're not as social anymore. Tracy's not as social. And like, the the culture in the south isn't, I think the women connect the dots and connect the families, and then do the things, and then when she's out, you know, there isn't much connection, right? So, like, and then she, she's had so much fatigue because of all the medicine, she can't stay up past seven, yeah. So, like, someone gave us tickets to Hamilton at the Greensboro Tanner center. We went, and we stayed for the first half because. By the by intermission, she was exhausted, so we went home. That's the kind of experience that is today, when there was an initial surge and all those things and like, you know, people's lives change, and, you know, we're still kind of captured.

Natalie: 35:16

Yeah, it sounds like you're a little bit almost like held hostage, like your life is in this pause, in this circular just kind of go to doctor's appointments. And I remember that myself just feeling like and that's why I think it's almost like a merry go round that never stops, and you can't really get off. And I remember that's, I think that's why we really that's where I realized I was not okay at the end of everything happening when we came back from New York is and I've never thought about this until you kind of said everybody just kind of it almost become blurry, if you think about it, and and when the merry go round finally stopped, I looked around and I couldn't figure out where I was, and I felt very disoriented, and wasn't sure what I was supposed to do or where I was supposed to go. I wonder about, how, how do we stretch that out? Because what you're saying is so authentic about, like, we've been caregiving for five years, and we know moms respectfully burned through people, like, let's, let's call it for what it is. We've burned through people, they can only handle so much. And if you really think about it, at some point, this is the hardest thing to say, people, to see, you guys, going through such a struggle is very hard. And I wonder if that's part of the pull away, because it's like, oh, it's so hard. It's why I'm not invited to barbecues, because what are we going to talk about? Like, you know what? I mean? That's how I

Unknown: 36:42

Yeah, well, grief is always the elephant in the room. Yeah, no one, no one knows how to address it or say it or deal with that. You know, in in duality, this disease, where we've over extended our stay, you know, three or four times now. So, like, I don't know what people think, but it's definitely a nightmare I keep asking to wake up from.

JJ: 37:08

So let me ask you a question. You and Tracy, you know, you openly say you went through struggles prior, and you with your marriage. Tell me about your marriage now and what this has done and how this transformation has occurred, and what you share, what you could share with

Unknown: 37:24

others, yeah, so I'm more wanting to talk about feelings, because it keeps me grounded. She now is more active, action oriented, so it's nice when she does break down and grieve. I feel like there's more for me to do. The really nasty thing about brain cancer is the ongoing deficits that you experience with your loved one in terms of cognition, executive functioning, speech. So like in the middle of treatment, it's harder to connect because fatigue and those types of things. So we try to do date nights, you know, they're really early in the evening, which is fine. I don't mind so much. There's a lot of you know, I don't know what brain cancer did to her, but like for the first month, we watched every episode of 22 seasons of Deadliest Catch that she never had an interest in before, through all of those. And then, like, she likes to watch YouTube videos of like fails. And, you know, she always wants to search funniest pets, I don't know, so we'll sit and watch that together. So that's what that looks like. She like, still likes to go for walks, and I'll do that with her when I can. I think the the Dreaming is not as big anymore, the vacation, like our final also, and what sounds on vacation. Sounds on vacation, you know, like the only vacation I want is the kids not to be at home and we stay home because going somewhere is such a stressful endeavor. It's not relaxing at all, because I don't know where, I don't know when we're gonna need a hospital, where the hospital is where, like, Oh, I'm at home. I've got everyone at my fingertips. Yeah. So it's definitely like, different. It's it feels more caregiving oriented now than when earlier in the process, which is sad. But, you know, we do devotions every morning. She pulls me into those. Sometimes I don't want to do them, but she like, we're listening to our stuff. Like, yep, so, like, very regimented. All those, all those core characteristics of her are now more on the surface. Yeah, those that grit, determination, doing is really there and then, like, paired with the short term memory loss, you know, losing her phone every 12 minutes, you know, just, you know, one of the biggest gifts we had this past week being away for treatment was some. Family, friends came over and organized our closet that had never, we never got a chance to organize our closet. And went to moved in, we saw 50 boxes unpacked. When this all happened, we finally, like, made something I would avoid in our closet till neck actually walk through.

Natalie: 40:15

Wow, it's really, it's, it's like, it is life interrupted. Cancer has interrupted and and really, kind of almost, kind of feels a little bit paralyzing and so but I hear you being I don't hear you saying, look, it's not roses, people, it ain't roses and unicorns and all that. But I do hear resilience in you and the things that you're going to continue to do, the things that you're trying to do, to remain connected there, the things that you're doing, because the out, the prognosis for this is still the same. And this goes back though true still, though we're all going to die at some point. The problem is, for you guys is that you know that time is more limited for your wife. And so how do you take that time that you have, and how do you maximize that to the best of your ability? Because you've got five children, you're 18, that at the time when you had that child that you 18 months old, this child has only known your wife being ill and and how do you so, how? I almost want to say, how are the kids? Three years later, four years later. Do you know what I mean, like, how are the kids?

Unknown: 41:31

Yeah, so the oldest doesn't want to know anything, so I have to pull them in sometimes let them know. The second oldest wants to know everything, so I have to push her away to reassure the third one doesn't want to know anything, and goes and runs. The eight year old daughter just knows mom's sick, and, you know, wants to know when it's calling me done. And the little guy doesn't have a word for this. So how are they doing? I feel like because now we're on second recurrence, and in clinical trial and experimental treatment. Everyone's on a little more edge than normal. They're like, is this gonna work? And I'm like, I don't know. Well, how come you keep saying you don't know? Stop telling me you don't know. I don't know. Be more certain. I'm certain I don't know.

Natalie: 42:18

It's hard for people that don't have life experience to understand.

Unknown: 42:21

So I really think about it, to not have any type of certainty to reassure your children that their mom's going to be okay tomorrow.

Natalie: 42:30

Yeah, yeah. Do you? And this is personal, so if you say no, don't I'm not answering that. Do you have them in therapy? How are they doing in school? Because these are things that I think that are important for sandwich generation. Caregivers that have children, people that have children, they're trying to understand what's going on with the adults.

Unknown: 42:48

Yeah. So I'll start with me. There was a point after the first year where I was tying my shoes in the mud room, and one of the kids goes, Dad, dad, dad. And I was like, Well, no, what's happening? A little guy put his hands in the garbage, and I had to go take a nap because my heart rate went so high, and I kept on like getting disoriented. I was having panic attacks. So I started doing trauma therapy and EMDR to kind of just be able to not go like that. And I did that for a year to my kids have done counseling for anxiety and just having someone to talk to kind of walk with them, yeah? So like, yeah. And I've thought about, like, you know, what is it gonna look like if something does happen? And you know, you're always, you're always rolling your brain into the what ifs, yeah, I know when I'm grieving the most is when my brain starts to write her eulogy.

JJ: 43:46

Have you you two talked about it like she says, This is what I want for the kids, like, this is the plan for you? Is it something that she that you two verbally talk about? No,

Unknown: 43:58

because we're still on the on the path of decades, not days. Got it. We have done all those, you know, all the estate planning and, yeah, all the documents. But, like, I don't think we will have that conversation until it's staring us in the face, which is probably going to be the wrong thing to do, but it's just that's okay. It feels like giving up a little bit for us who are like, have a dream. Go make it. Yeah,

JJ: 44:28

you said that, Tracy, you're now in clinical trials, and some people are averse to those. Some people are afraid of those. Can you tell me just briefly about decision to do that and just move forward with it? How you guys got no clinical

Unknown: 44:40

trial. Well, the assumption you're making is that we had options, okay, because of the two surgeries that took away a bunch of options because she had spinal radiation. You hear all the great things about immunotherapy and car T cells. Can't do any of those so. Really limited after the last treatment approach progressed. So, like, we would have many options, and this one seemed good. So going into my scientific experience, like, I really know that for glioblastoma, you have to have a multi disciplinary approach, and you're taking a standard of carry chemotherapy which has some DNA destruction capabilities, plus a new molecule, which, you know, brain tumors are really cruel. They hide. Your immune system doesn't know they're there. Yeah. So this medicine that we're taking presumably turns it on, or goes from cold to hot, your immune system goes, oh, what in the world? And then also delivers a cytotoxic medicine, yeah. So we've got, like, a standard of care, chemo, the ability to turn your immune system on, and then something that's delivering the medicine. And we know that goes through the blood brain barrier, which is also another thing, and I could get into, like, how people use mouse studies to propagate hope, and it's really destructive and predatory. But, you know, we didn't really have a lot of options.

Natalie: 46:12

You know, I know Jay, we're kind of at the end of our time, and I want to, like, I feel like I need to tell you, Jason, that I love you, because I feel like there's not a lot of folks that are going through this level and this duration, that the intensity and severity of what you guys have been dealing with and being parents and trying to support your wife and trying to make it financially, because We didn't even talk about finances. We didn't talk about how probably devastating this can be for your family, and how do you make sure everything's going

Unknown: 46:48

especially when you get laid off in the middle of it, yeah,

Natalie: 46:52

because you got laid off in the middle of it, correct? Yeah.

Unknown: 46:55

And I've had vertigo, and I just got through blood clots in my

JJ: 46:59

leg. Is that from not taking care of yourself, or

Unknown: 47:03

probably some of that and just chronic stress, you know, diagnose PTSD, diagnosed caregiver burnout, diagnosed anxiety, depression, you know, all those things, insomnia.

JJ: 47:16

I know you said, I know we hadn't really talked about, Well, you said about getting laid off in the middle. I'm kind of curious anything to do with caregiving. Do you think that was an underlying or was that time off or kind of

Unknown: 47:30

a I don't think I believe that to be true. Yeah. Okay, good for an oncology drug development organization. That would be a bad optics. That's bad had more to do with some of their internal where do we want our workforce to exist and not exist?

Natalie: 47:49

I'd rather, and let's believe that, and because I agree with you, the optics would be bad if they did, and it doesn't align with what the beginning felt like

Unknown: 47:59

part two of our conversation,

Natalie: 48:03

you know, let me ask you, this our, I know that. And again, just kind of thinking about going into our sister questions, which we do nothing but sister questions the whole time. Spoiler alert, I look at like, you know, information that you sent me and things that we talked about, and you talk about, you're the founder of aware coaching, a free support service for families impacted by brain cancer. So you're not only just taking care of your wife and being a part of that team, you know, because I know there are people, but you're the primary. You're also still trying to advocate, and you're trying to help other people who may be going through this experience, maybe earlier on the journey, or equal to and potentially even people who, who may have have been successful in their body's response to the treatments. And you know, what can you learn from those people? I just have to say, I think that's absolutely inspiring, that you you still have the wherewithal and the resilience and internally to be able to say, and I'm going to take that on too.

Unknown: 49:06

Yeah, it started as wanting to do similar marriage coaching for folks impacted by brain cancer, and it's kind of morphed into advocacy that I've done head of the hill. It's morphed into developing AI capabilities to help families navigate all these questions so they don't end up having surgery in the local hospital after finding it and end up, you know, not leaving ever, yeah, so like, I provide those for free. I mean, I'm always answering questions on Facebook support groups at this point, you know, people ask me questions about different things, and I think I'm uniquely experienced with my pharma background, my technical background, my marriage coaching background, and being a caregiver. I'm kind of perfectly designed to do those things, and it gives me energy to. Yeah, it's an, it's probably a distraction and an avoidance for my current state, but it's, it's a positive and healthy coping versus a destructive one. Build your three and 12, yeah. So that was a question people asked around. How do you build community? So most people don't have community. It's true, right? Especially in the social media like, I get my fill on likes and, you know, repost or whatever, and I'm do this fair share of that, so it's biblically inspired. So like, whenever Jesus went away to do something really important, he had James, John and Peter come with them. Hey guys, and go into the garden to pray. Stay awake and they don't. But like, those three, those three went to the transfiguration, those three, when all the inner circle of everything that was going on that Jesus revealed to them. And I've got Kyle, Matt and Andrew, who are, like, on my group text, and it's like, you know, this past week when, you know, I had a blood clot and Tracy was really sick, and I was like, I want to tap out. I'm tired. I'm done. Like, you know, they were praying for me. They were like, they all showed up at the house where the kids were and did stuff with them. And like, you know, they know everything that's going on. And then the 12 are like, what community or am I in? Is a small group, or Bible study or Men's Ministry? Like, those are the 12 that they're not all the way in, but they're the ones that are like, you know, throw me over their shoulder when I need to be praying for me. You know, just, man, I'm so sorry. Man, like, I can't imagine. Hey, did you watch the Eagles game last night? Because it looked really good. And like, that's my 12. So, like, I tell everybody, male or female, get a three and get a 12. And most people are like, I don't have anyone. Most dudes have zero. They got drinking buddies and video game, you know, friends that do child like things. So that's not really what this is at all. It's someone who's pouring into you, pointing you up to Christ, connecting you back to your wife, you know, at all, in all instances. And then, you know, are there to get your back.

Natalie: 52:03

I've never heard of get your three and 12. And I just, I wanted to make sure that we got that, because it's so true. And rather, here's the thing, whether you believe in God and Jesus or not, it's sound advice. Oh yeah, three and 12. Get your three and 12. And I'm that'll be something that just kind of sticks right here in my head, because I think about that for who we had, and I feel pretty confident I had three and 12 without question during our cancer treatments. And I could, I could, I could name my three for sure, and two of them were my sisters and so, and they were always there. And then I have another friend, some other friend that that was really close, Jay, what? What's your sister question? I don't want to keep going, because I'm like, Oh, I could just keep talking.

JJ: 52:54

Okay, you wrote something in your bio that was really intriguing to me, and it was that female patients are six times more likely to be abandoned. Yes, and I have never heard this, and you said, my goal is that is not going to be me. I'm not going to be one of those. Could you just tell me about that a little bit and why you said that's not going to be

Unknown: 53:14

me. So, as someone in pharma that did product development, you know, in scientific community, you need data to support claims, and I was really getting into this relational health need to keep marriages together during trying times, emotional resilience and emotional intimacy is the bedrock. Most men don't know how to do that. So how can I teach them? And then I came across this publication for the American Cancer Society in 2009 that essentially said that, you know, there's, there's gender disparity and caregiving, and that when the the wife has a chronic disease and even calls out primary brain tumor, there's in the data set they had, there was a 6x increase in separation and divorce. And then when I went, and then usually it's that response, wow. And then the next is, and I'm not surprised, yeah. And as a dude that almost blew up his own marriage and then came through like the paper suggests, that it's a lack of commitment. It's not a lack of commitment, it's a lack of capability to hold all of that. Because you don't have your three and your 12, you don't have emotional awareness. If you don't have emotional awareness, you can't have empathy. If you can have empathy and emotional awareness, you can have emotional resilience. So like you said, it's not going to be me, because I've got a son who's 17 who's going to watch me. I've got girls who are watching me. I know how my dad didn't do the things that I'm going to do now and then all the men that I've coached through their process, you know, they want to believe that you can never go back. Like so many people say that part of recovery is relapse, and I don't subscribe to that at all. No, you don't have to go back if you know what's coming at you. So not only do I not. Want to be that statistic. I want to destroy that statistic. I love that, you know, instead of the 88% of those couples experiencing that, I want it to be 0% I love that.

Natalie: 55:10

I could not absolutely love that anymore. And that's actually where I'm gonna I'll stop us. And I do have one question, because, and it feels so flippant now, because, but, I mean, really don't want to like that statement that is speaking to every man, but it's also speaking to every human, because it doesn't just mean not men aren't the only ones who need some emotional resilience. Yeah, everybody does. And I can tell you right now, yes, that's my answer, because that's important. And so if that spoke to you, trust your gut and listen to it. I always end with this question, because it brings me joy to hear about how you experience joy. My question is, is, what is your favorite guilty pleasure? What is the thing that you do just for you, that brings you joy.

Unknown: 56:01

It is McDonald's caramel sundaes with double caramel.

Natalie: 56:08

Oh my gosh, McDonald's, you need to, you need to love on Jason. And honestly, if you could just send him a machine that works consistently, that would

Unknown: 56:18

be great. The ultimate thing.

Natalie: 56:20

Yes, the machine is always broken. McDonald's, please get better. They just, they're, oh, they're cleaning it. So Jason, my Jason, his favorite is, it's not double, but he loves a McDonald's sundae with caramel, and it brings him so much happiness, exactly as yours, because for him, he can taste the caramel. Someone who can't taste There you go. I get that. Oh, I love it. Well, you know what? Jason, thank you so much for being with us. It was this has just been such a blessing. And you sharing your just authentic, honest story and where you're at right now, because you're not done yet, sir, and you're not out. You're not out. And so I we will continue to pray for you and your wife and the babies and regardless of how old they are, and we appreciate you being here. Jay, you wanna close this out

JJ: 57:18

absolutely thank everybody for being here, especially Jason and until we confess again, we'll see you next time. Bye, bye.

Natalie: 57:30

Well, friends, that's a wrap on this week's confession again. Thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast, don't forget to visit our website to sign up for our newsletter. You'll also find a video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details are included in the show notes below. We'll see you next Tuesday when we come together to confess again, Till then, take care of you. Okay, let's talk disclaimers. You may be surprised to find out, but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I, at Confessions of a reluctant caregiver, have taken care in selecting speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors or hosting company, this podcast is copyrighted and no part can be reproduced without the express written consent of the sisterhood of care LLC. Thank you for listening to the confessions of our reluctant caregiver podcast.