Confessions of a Young Widow: Rising Above Grief

Shannon Traphagen became a caregiver at 43 when her husband Mike was diagnosed with incurable brain cancer. Their 14-month battle was fraught with heartbreak, including losing an adoption opportunity just before his diagnosis. Despite the challenges, Shannon showed remarkable strength, focusing on Mike's care while managing her own health and emotions.

Her experience highlights the emotional challenges of caregiving for young couples facing medical crises. Shannon and Mike's relationship stayed strong through his illness, with Shannon noting their silent communication in his final hours. After Mike's death, she turned her grief into purpose by creating the "Game On Glio" podcast to support others and focusing on her healing through counseling, self-care, and openness to love again.

Today, Shannon honors Mike's memory while building a new life. She’s writing a book about their journey to share hope and resilience. Her goals are to find love, stay healthy, and create a lively, connected home. Her story shows how caregivers can survive loss and stay hopeful.

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Learn more about Confessions of a Reluctant Caregiver: https://confessionsofareluctantcaregiver.com/

** Caregiver Action Network Caregiver Help Desk offers free support to family caregivers via phone, chat, or email Monday through Friday, 8:00 am - 7:00 pm Eastern. Get answers, resources, support group info, or a listening ear. Visit www.caregiveraction.org/helpdesk/ or call 855-277-3640.**

Shannon Traphagen became a caregiver at 43 when her husband, Mike, was diagnosed with incurable brain cancer. Their 14-month journey was filled with challenges, including the heartbreak of losing an adoption opportunity shortly before his diagnosis. Despite this, Shannon focused on Mike's care and maintained her own well-being.

After Mike's passing, Shannon channeled her grief into purpose by creating the "Game On Glio" podcast, which supports brain cancer patients and their families while spreading awareness. The podcast, which ranks in the top 10% globally and won a 2023 Ignite Award, shares stories of resilience and hope.

Shannon is also the founder of Traphagen’s Trail Ride 4 Brain Cancer, raising over $75,000 for clinical trials. As an accomplished writer and motivational speaker, she continues to honor Mike’s memory while writing a book about their journey and focusing on her healing, health, and

Transcript

Natalie: 0:00

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. Leave with helpful tips and resources and, of course, laugh. Now let's jump right in to today's guest confession. Hey, Jay,

JJ: 0:25

hello, Natalie. How are you doing this? You know, I'm great because we've already been bantering with our guests. I'm so excited. You know why? Why? She wants a goat as well?

Natalie: 0:34

Well, she likes, I mean, she likes goat yoga. She likes goats. Goats seem to be a big theme in her life right now. She's

JJ: 0:40

my BFF. You do not get any friends

Natalie: 0:42

now, that's, that's, I don't really care. Shannon's already my friend. She'd already committed to me, and we're going to do a podcast, because Shannon is a pro at podcasting, because she has her

JJ: 0:52

own podcast, I know, and you know, it's so much fun, Shannon, we are so glad to have you here, because it's interesting to have another podcast with us, our podcaster with us. Let me tell you a little bit about Shannon, because about Shannon, because she is. She's a podcaster like us for reasons like us. So let me tell you about Shannon so we have with us today. Shannon Traphagen, look at me. I got it right. She's also known as S M Traphagen. That's what she uses for her books. So Shannon became a caregiver at 43 when her husband of 18 years was diagnosed with an incurable brain cancer and he passed 14 months later. Shannon, however, has taken that experience and turned it into something like I said, sounds very similar to us. NAT, yep, the game on glio is a podcast in his memory, and it's morphed because, I think originally it was a focus on brain cancer, and today it's a hope filled show that Shannon says is about rising above trauma loss and finding hope again. I'm

Natalie: 1:57

telling you, it's like Shannon so awesome. I tried to, we tried to get Shannon, just so our viewers know, we tried to get Shannon to come down to Bristol to record in studio. We couldn't line it up because she was deciding if she was getting a puppy or not. And the puppy saga continues. And so she's laughing. She's laughing right now. And so we've been, we know we're very supportive of, you know, we were just talking about the need for temporary rentals of puppies, and so I'd like five hours of puppy breath, absolutely. I mean, honestly, it's a great way. So Shannon was sharing, this is clearly a caregiving podcast, but we're talking about animals, but it's their animals are therapeutic. They are they are very therapeutic. And she was saying that there in her area, there are cat cafes. And Emily has Smokey the cat. And Emily loves smokey, and so I'm going to tell you that she is going to be on the cat cafe. Emily be like, she'll be like, What do you mean? There's a cat cafe. Shannon, we are so happy to have you. Thank you

Unknown: 2:56

so much for being here. Thank you so much for having me. This is already great conversation.

Natalie: 3:02

I thought this was caregiving

JJ: 3:05

dogs. I don't know where else we're going to land. It's like, I mean,

Unknown: 3:09

you can't talk about caregiving without talking about goats and dogs. They kind of go hand in hand. I mean, it

Natalie: 3:15

is. I mean, you're always feeling like you want a head butt, like somebody standing on your back. And so, you know, Shannon, we always like to start off and just, I love yours and your husband's love story. I mean, I know when we met, we could have, like, we could have recorded our conversation, and that would have been our podcast. And then we talked about menopause, and we talked about all life after, and it was hilarious. I'm like, That's it. We're having our own podcast. And so just add another. We've got so much free time and so, but Shannon, go ahead and share with us. Give us some information about your background, like where you grew up. You've got sibs which love that you she's going to share what birth order super important. So give us some dates about that. Yeah, you know, it's

Unknown: 3:59

funny. You mentioned birth order, because that tells you a lot about your personality and your character. It really does. It kind of tells you, especially as a caregiver, as an oldest sibling, you tend to have that caregiving gene a bit more predominantly than if you're the younger sibling, typically, according to psychology. But yeah, I grew up in Western New York. Well, I grew up in central New York. I moved to Buffalo, New York for my late husband. I'm one of three siblings. I'm the oldest of three, and we're kind of all spread out. So my parents, God bless them, are retired and married 52 years, and they they've now split their time. They're thoroughly enjoying retirement and splitting their time between all of us. We all live in different states, so you know, it's we're a really close knit family, and my husband and I were the same way. We were really close to his family. Well, he was the middle child, which I think is why we worked well together. So

Natalie: 5:04

clearly I can align with Mike,

Unknown: 5:07

yes, as the oldest and he was the middle he had two sisters. My brother had two sisters, and my brother was the middle child, which was interesting. Oh, yeah. So there was a lot of synergy between our families. And, you know, I it's, it's interesting, because I, whenever I tell this story, people ask all the time, you know what made you and Mike work? And you know, how did you guys meet? And when Mike and I started dating, we had met through mutual friends, when I was only, like, 24 years old, and when we were together for about four or five years before we ever got engaged, so we moved in, it was kind of that perfect progression. We dated, I moved to Buffalo. I lived in my own place for a year and a half, then we got our parents blessings and moved in together. Then we got engaged, like everything kind of went the way it was supposed to. And when we got engaged, we went, we flew down to Florida to tell his family, to tell his his grandmother, his grandparents, and his aunt, uncle happened to be down there, and his aunt started asking me questions about my family, and so I'm telling her, and I'm telling her where my mom grew up and where my dad grew up. And she goes, What's your mom's maiden name? And so I tell her, and she gives me this weird look. She goes, did she live on Hillcrest? And my eyes just got really wide. And I'm like, How do you know that she goes, because your mother was my brother's high school sweetheart,

Natalie: 6:36

no kidding.

Unknown: 6:39

And I sat there and Mike, my late husband, looked at me, and he goes, please tell me we're not related. Oh,

Natalie: 6:47

y'all didn't live in Tennessee. You're fine. Yeah.

Unknown: 6:50

I said, we're good. I think we're good. I think we're good. And she looked at me, and she goes, yeah. She goes, they were together for about four or five years, and we used to go over to her, her family's house all the time. She goes, call her, call her up. So I call her and and she goes, tell her, tell her, Boo says hi. And so I go, Mom, I'm supposed to tell you that somebody named boo says hi. And it's just dead silence. It's just like dead air, wow. And she goes, How do you know that name?

JJ: 7:19

You're not gonna believe me,

Unknown: 7:21

yeah, I mean, it was she had married into Mike's family, his aunt and and then as we were planning the wedding, there was even more. We found out we used to play on the same playground together at our grandparents houses, and we never knew it. And our my one cousin worked as a book binder. They owned a book binding business, and we were looking at their invitations, and it turns out they actually are business partners of his aunt and uncle. So there was all of this weird synergy. And it couldn't have been, I mean, it just it was that feeling where you were like, Yeah, this was meant to be. We were really meant to be together. So it's kind of one of those really fun stories to tell and to share with people. But, you know, that's kind of how everything jump jumped off and I moved to Buffalo as things got more serious with us. Not that I I love Buffalo. Now. It has grown a ton, but when I first moved here, it after about six, seven months. I was like, What did I here?

Natalie: 8:22

My best friend, Bradley, lives in Buffalo, and I'm like, Dude, there's a lot of snow.

Unknown: 8:27

Like, oh, it's chill. And if you're in the city, you're usually okay. But with where I live, I'm kind of close to the Pennsylvania border. I'm down in the south towns, and we get not inches, we get feet, feet feet of snow every season. So, yeah, it's brutal. It's brutal. Yeah, I've got people asking me all the time, please move please move down south. Are you still in Buffalo?

Natalie: 8:53

So So you and so you and Mike, when you all met. Did you meet in college, or was it after?

Unknown: 9:00

It was right after, actually we met. So I had joined, I finished my undergrad degree and had decided to join AmeriCorps. And so I did AmeriCorps for two years and got a scholarship from that that I used to go back for my master's degree. And it was during the tail end of my service with AmeriCorps, that he and I, we kind of already knew each other because we had similar circle of friends, but we started connecting a bit more. And it was one of those things where every time I was single, he wasn't, when he was single, I wasn't, and then we finally went to this we were at a party together, and I was, I don't even know if I was 24 yet, and I told one of my girlfriends, I said, I really, really like everyone called him Trappy. Yeah, that was his nickname. And I said, I really, really like Trappy. There's something about him. And she goes, Shannon, don't, please don't, because you go through guys every six months. He's too nice for you. He's too nice. Please don't date him. He's it's not gonna work. And I said, there's something I don't know. And she's like, please don't do it. You'll break up in six months. I better ruin it for us. Yeah, and but we did. We started talking, and one thing kind of led to the next. And so it was through kind of mutual friends. And I was about 24 when we actually started dating. But it was, it was after college. We were together when I started my master's program. We were already living together when I started my master's program. So yeah, so

Natalie: 10:30

life is is moving along. You, you guys are working. Tell me what Mike did.

Unknown: 10:36

So Mike was, he was a product engineer in military and defense. So he he knew from high school. He just, I always tell people he was like Sheldon from Big Bang Theory, without the autistic mannerisms. He was normal. He was that cool guy engineer, that he was the guy's guy. He didn't have a pocket protector. And not that there's anything wrong

Natalie: 11:03

with that all those carrying pocket protectors.

Unknown: 11:11

He was just very intelligent, I mean, just smart as a whip, and he could rattle off complex numbers really quickly. And so he was just very good at engineering, and he loved race cars. He loved working on cars. He was kind of a gear head, and so he kind of that was his passion, and engineering became what he really wanted to do. And so after he got his undergrad, he was very fortunate to get some really amazing job opportunities, and he ended up in military and defense and stayed on that progression, and then they actually paid his company paid for him to go back to get his MBA. So

Natalie: 11:49

that's pretty cool. Yeah, it always feels better when somebody else pays me to do something. I wish. I

Unknown: 11:55

wish somebody had done that for me. I'm like, this close to paying off my master's degree. How long has it been? 17 years yeah,

Natalie: 12:03

my goal was 45 I hit it right. One month under. We're all like and we're still

Unknown: 12:08

paying Yes, exactly.

Natalie: 12:10

So life's moving along for you guys, life is good. You've got careers, you're doing things, you're you're because you guys did not have children, correct?

Unknown: 12:21

We didn't we, we, we took our time. You know, we were so young when we got together that we kind of grew up with each other. And once I finished my master's program, my my husband always thought I was going to be a lifer, because I loved I loved school, I loved education, and I even went back, I think, in 2017 I got accepted into a Media Writing Program at Yale. And so I attended Yale for a summer. And so, you know, we he always teased. He says, You know, I don't know how we're gonna fit kids into this, because you're constantly in school. Yeah, I can't help it. So it took a while. But you know, when we once we bought the house and we started to settle in and we had our dogs, life, felt like it was really starting to settle and we felt like this is and it's never a really good time. I mean, they always say it's never a good time to have kids, right? But we just knew when we felt it. We were like, Okay, I think now is a really good time to start. And so in my I think I was probably in my early to mid 30s, we really started trying. And after about five or six years of really trying, pretty steadily and measuring things and keeping track of things, and it wasn't working, and so we started going in to figure out if there was anything going on. And everything was good. We were both really healthy. Everything looked really good. They did an exploratory surgery on me, and I was actually okay. So we weren't sure, you know, we knew we were fighting something, but we weren't sure what it was. And I'm a person of faith, and so I just said, you know, maybe we're not meant to have our own, and if not, then we'll adopt. You know, there's always another avenue. There's always, yeah, another, another path. And so we started that process when I was 40. We started the adoption process. And I actually in during that time period, I got pregnant three or four times, and we had done a couple of procedures. We did IUI, which never really worked. We knew we didn't. I didn't want to do IVF, I didn't want to push my body if it wasn't meant to be. But we I did infertility acupuncture, and I got pregnant every time I did infertility acupuncture. Oh, wow, which was really interesting. Yeah, I ended up miscarrying each time through through the pregnancy, but we were already in the process, and so when we started the adoption process, took about two and a half years, and then we finally got picked and we couldn't figure out we're like, we've got such a great home. It's like that white picket fence. Hands, and we got the dogs. And why is nobody picking us?

Natalie: 15:02

Yeah, your home study is solid. I'm not gonna lie to you. Your home study is solid. We

Unknown: 15:08

were good. I'm like, What's wrong with us? I'm like, everybody else is getting picked. And so we did. We finally got chosen. And the birth mother, she was just amazing, and she just had some really hard knocks in life, and really needed help. And so we were on that path. We we were probably five or six weeks away from bringing we had just done the gender reveal, so we'd had the ultrasound with her. We knew what we were having. The baby's room was just about done. We were planning the baby shower, so that's how close we were to bringing her home when he was diagnosed with terminal cancer and we lost the adoption. So Wow. The journey of motherhood has been fraught, to say the least. I'm going

Natalie: 15:51

to I'm going to pause this right here. We're going to take a break and we're going to pick up, yeah,

Unknown: 15:57

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JJ: 16:46

All right, everybody, we are back here with Shannon. Wow. This is kind of a turning point. So you're at that cusp of you were going to have an adoption. Tell me about the diagnosis. What happened?

Natalie: 17:01

What were the signs? Yeah, what were the signs that that that was the reason that made you say, okay, something's not right.

Unknown: 17:09

It was really subtle. And I don't know if it's me being a proactive caregiver, somebody who's always kind of in tune with health and body and mind, but brain cancer has your symptoms really can vary. You can you can have something as extreme as a seizure, which is really what sets people off, dizziness, issues with your eyesight, and in Mike's case, none of that was prevalent. It was severe anxiety and some brain fog, and that's all he was displaying. And we thought there was so much going on. He had some amazing opportunities going on at work. We had the adoption we were getting ready to bring home. So we knew that there was some big life things taking place. And I thought, Okay, this is why he's feeling anxious, and it's okay. What I didn't know was that he was struggling with writing at work, but I wasn't seeing that at the time, so that wasn't presenting to me. What happened was he his anxiety was just to the point where he really felt like he just couldn't he couldn't shake it, and so I sat down with him on a Sunday night, and I said, make a list, write down all your symptoms. Tomorrow morning, we're going to go to your primary. And he luckily had a primary right on site his his company offered health care services, which was amazing, and they had a full time physician, which was great. And so we knew we could just walk in and say, hey, you know, we just need to see the doctor real quick. So he was going through and he was kind of writing down how he'd been feeling for the last couple weeks. And then the next thing he knew, like he was starting to write the letter C, and he couldn't write it, and he was struggling to write the letter, and he kind of looked at me, and I immediately went to, is is he having some kind of stroke? Like, is this what's going on? So that was where my head had gone. I was not thinking brain cancer at all. Like that was nowhere near my radar, and that's what brought us in. I said, You know what? Let's just go over to urgent care. Let's just do some basic protocols and just see where you where you fall. And that started everything, and he passed everything, and then we went to the emergency room, because they said, the only other thing you can do is an MRI. I said, Okay, so we went to the emergency room. We did a CAT scan, he did ultrasounds, he did all of this stuff. They did blood work. Everything came back normal, and the MRI was the last thing we were waiting on. Even though the CAT scan came back normal, the MRI finally came back and it showed that there was a huge mass in his brain, yeah, and that was one, and it was interesting, because. Because when we got to the emergency room and he was they were asking the intake questions, it was almost like the tumor knew I'm getting ready to be found out. Because then all of a sudden he started struggling with things. Just out of nowhere, he was struggling to remember some things. He was struggling to say some things. And that's when I was like, okay, and I still thought we're on the path like, did he have some type of mini stroke? But that was when we got it was probably around 1230 in the morning, Sunday night, going into Monday that we got the the official, there's a mass in his brain.

JJ: 20:36

So Shannon, I know that after this, this ER visit, they tell you about this mass. At what point do you get to an actual specialist? And they say, this is the action plan, or this is what the cancer is. At what point do you get to that?

Unknown: 20:53

So fortunately for us and for me, I was working at the time as an associate publisher for health and wellness magazine, and being in the industry that I had been in for so many years, and previously, being a trauma social worker, I knew how to advocate, and I had sat on enough boards that I actually I happened to know the chair of the neurosurgery department at the hospital, and so I texted him immediately and said, Look, we're in the ER, this is what happened. This is what they found. What do you think? And he goes, let me look at the scans. And he was out of the country, so he took a look at the imaging, and he's like, I'm thinking it's brain cancer. And I go, I you need to do the surgery. I need you back here right now, because it's, it's either you or we go down to John Hopkins like that's so he flew back and within three days, did the surgery. Wow. And because of where it was located and how big it was, they threw out the word glioblastoma really quickly. A lot of times they won't do that, depending on the location or the size of it. They want to make sure. They want to, typically, you do a biopsy. First you go in, you clear the margins, you get as much as you possibly can, and you see if it's definitely glioblastoma, because there's a lot of other brain cancers. It could be an astrocytoma. It could be, it could be a different type of glioma, which is still devastating, but they're a little bit easier to treat, and the length of life is usually more so when they threw out glioblastoma, and Mike was starting to experience some really severe headaches in those three days between the surgery, all of a sudden it was like a drill, he said, in His temple. And that was when I said, Okay, you know, I really think this is what we're dealing with. And so within three days, they did the surgery, and we knew he cleared. He got as much of it as he possibly could. He said he cleared about 98 to 99% of it. But when you're dealing with glioblastoma, there's always little cells that kind of want to migrate away, and that's what makes it so hard to treat. And we got the diet, the official diagnosis, probably within the week.

Natalie: 23:11

And so that really, that turns your entire life upside down. You had this, you know, I think it's one of those things. And I'll say this, when Jason got cancer, was diagnosed. Jason has neck and back issues, and I can remember thinking like he felt like he wasn't able to work because of it, and he and we thought, this is going to be the hardest part of our life, and how do we do accommodations? And I know that you're thinking, you guys have been you had infertility issues and wanting to have a baby, and now we've got this, and we've got a solution, and it feels the same, same way for me, in the sense of, okay, we've, we've gotten on this path, and we feel like we're going and then all of a sudden we have this cancer diagnosis, and we're like, wait a second that no, I've had my share of really crappy crap, and so that's how I felt about it. And I know that's and he feels that way. I mean, he really feels that way, like I had the hard time. And so I know that you said the adoption, it just faded to the background. I mean, it just it went away. We

Unknown: 24:11

actually lost the adoption. The birth mother did not want to let us go. She didn't care. She did not care about the diagnosis. The adoption agency backed out, and we weren't expecting that, and we because she's the birth mom, was in a different state. I didn't know he was just he was on steroids. He was getting ready to start radiation. I didn't know how to be in two places at once. And I said, if the adoption agency is pulled out, we have nobody to help us navigate the last end of this. And when you, when you finalize an adopt, an adoption, you have to be down in that state three to four weeks. So, you know, once they pulled out, we talked about doing a private attorney. That was impossible. And I remember. Her very vividly, Mike and I sitting up on the bedroom, on the bed in the baby's room and calling the birth mom and putting her on speaker phone. And when she told us she didn't care, she wanted us anyway, Mike just started crying, and that broke me, and we knew that, you know, at this moment, this just isn't it just isn't planned. And I said, I need to focus on him. I need to focus on his health and getting him at least to that five year mark. If we can get him to the five year mark, then we've got a shot at him staying steady for a while. And so that became that just, it was just hyper focus, yeah, and we were grieving. She sent us a picture when the baby was born, and that it killed me, because the baby had really dark hair. She looked beautiful. And, you know, we, I think we always hoped that once he's stable, yeah, we can go back to her and say, okay, you know, let's, let's see about bringing her home. And it just never it just never materialized. There's

Natalie: 26:04

a lot of grief in this story. Yeah,

JJ: 26:06

so tell me about 14 months. Tell me about Tom. Tell me about what your time looks like with Mike.

Unknown: 26:14

Oh gosh. You know when you talk to a lot of other cancer families and caregivers, and you hear stories of people who are dealing with remission, and their loved one has been in treatment for two years, three years, four years. And I think about that, and I think about the time frame that Mike and I had, and I feel like 14 months came quick. And in the same respect, that 14 months was the longest 14 months of my entire life. Agree, it was so overwhelming and so slow, and it felt like an out of body experience. It really did. I I didn't know if I was coming or going. I wasn't sleeping very well. His health became the top priority. So of course, all of my annual care got pushed to the to the wayside. I missed my annual appointment, I didn't go to a mammogram, I didn't go to my dental cleaning, I hadn't gotten my eyes looked at. I pushed all this stuff away because there was so much going on with him. And then we hit a point where he was stable for about six months, and his oncologist was really holding him up as the poster child. He's like, wow, there's nothing. His MRIs are clear. He's good. He could be that case. He could be that rare case. And so we were starting to get really excited that okay, you know, he's 45 years old. I think, you know, maybe we've got this, you know, we know it's going to take him at some point. But, man, if we could get him over 50, that would be like, That's how small you're, you know, instead of the big dreams that you're thinking, okay, you know, if we can just get to 50 years old, you know, we're doing okay right now. And he really started, as we hit the one year mark of his diagnosis, he started losing weight and body mass rapidly, and he was having more and more seizures. One of his seizures produced pneumonia, which sent him into the ER. And I was really fighting and advocating for with his oncologist to hear me, because I said, Something is wrong, something has changed and shifted. And he said, No, his MRI was just two weeks ago. Was completely clear. He's just having chemo anxiety. It's in his head. And I'm like, Look the seizures, the weight loss, this. He's throwing up every time he eats. This is not in his head. He wouldn't listen. And so I took him to the emergency room, and I demanded a spinal tap. And in doing so, we found out that, and it's very rare. Spring cancer is rare as it is, and he ended up with leptomeningeal spread, which is when the cancer leaves the housing of the brain and gets into the spinal fluid, wow. And there's no turning back at that point. There's nothing you can do. And so within two months, he he disintegrated rapidly, and on October 29 of 2020, in the middle of the pandemic, he died from his cancer. Wow. That is

Natalie: 29:20

you just, you sit there and you're like, you feel this hope, and then it gets pulled back from you. You know I want to, I'm going to take the break now, yeah, and because I know we're a little early, but that's okay, because I know we're going to do, I want to hit on some other things too.

Unknown: 29:36

We'll be right back care Scout say goodbye to aging, care that makes older adults feel invisible and family caregivers feel alone. Say hello to a better path to finding, choosing and feeling confident about aging. Care, whether you're trying to understand what type of care and which supports may be right for your loved one, or you need to find quality care now care scout can be your guy. Learn more at care scout.com careforward is a technology platform that connects volunteers with seniors, the disabled and those with chronic or complex health conditions, offering support like transportation, home visits and more details online@careforward.io

JJ: 30:26

All right, everybody. We are back with Shannon and Mike. Her husband has passed after 14 months from brain cancer.

Natalie: 30:37

So I think that there are some things and that you and I had conversations about in the in between, in those 14 months and as a caregiver. I mean, you know, there's the rest of your life. I mean, work, family, not you already self admitted, self acknowledged. You know, I did not take care of myself. Did you allow for other people to help and take care of you? Because this is notorious caregiver 101, we are terrible at letting other people care for

Unknown: 31:11

us. We are especially women. You know, not to downgrade men caregivers, but I feel like women are because we multitask so much better. That's true. We just have a tendency to say, No, we're good and we'll do it all on our own. And that was definitely me. I was trying to do the laundry, I was trying to clean the house. I was trying to come up with new recipes that would be easy on his stomach. I was trying to take him to all his appointments. It took probably three or four months into his diagnosis that I finally said, I need to ask for some help. And it was with basic things. I didn't need help with him. I needed help with can you? Can somebody come out and take care of the dog while Mike and I are gone all day at this appointment? Or, you know, I had a I had a work I was still working during this time. I had my boss was fairly challenging at the time, and luckily, I worked from home, but there were things I needed to do. So I had a few times where I had a couple of friends come and take him to radiation, and then I would meet them there to go pick him up. I had, we had people. We finally accepted a meal train and allowed people to bring meals to which was very helpful, because I was cooking a lot at that point, you know, some of the other stuff, it was really, you know, like my parents and his parents came out to the house quite often, and they would just, and I think that was the biggest thing for me, was I didn't feel like I could leave him alone, because I didn't trust is he going to have a seizure? Is he going to feel unsteady? Is he going to get dizzy, you know what? If he has a severe headache or something happens? I was so hyper vigilant at that point that I didn't feel like I could leave the house and go grocery shopping while he was at home, and so our folks would come out and stay and hang out and just spend time with him, or make sure, and then text me he was doing good, take your time so that I could take my dog for a walk, so that I could go down. I remember when he started getting worse. Those last three months were really bad, and I was so overwhelmed, because I was cooking five or six times a day just to find something that he could keep down. And I remember my mom coming out to help out, and he was in such great spirits because we weren't sure yet, we weren't seeing enough of a decrease to really know something was going on. And I looked at my mom and I just said, I just need, like, a half an hour. And she said, Okay, go. And so I left and went over to this park, and I sat on this bench in this park for half an hour and just bawled my eyes out. And so it took a while, but I did eventually ask people for help. You know, when he started getting to the point where he couldn't go to the bathroom on his own, where he was having accidents, he had a catheter put in that I had to change at home, those kind of things were things that nobody else could do, and he wasn't comfortable with having anybody else be around that kind of thing. So and then at the end he was in, he was over at the Cancer Center at the end, so we had nursing staff and stuff at the very end, but I was basically living there. I was driving back and forth every day.

Natalie: 34:34

You also said, though that, that you found a counselor, yes, and I'm going to tell you that was something that Jason and I had tried to find, and there was a two month wait list after his diagnosis, and we never actually were able to connect with a counselor. I'm a social worker. It feels insulting like and you know, I'll say this, and you said one that had experience in rare cancer. Diagnosis and could do counseling, both for me, privately and for also for us as a couple. And that was something that I vehemently looked for, was a count, a counselor and our clinician that was seasoned, who had worked with individuals that had had cancer and their caregivers, and I ultimately never found them, and we never had counseling from it. And I think there's so many things, even today, we're three years out, and would that be beneficial for our relationship 100,000%

Unknown: 35:31

so tell me about that. That's a shame to hear that there's a little bit of anger in here. That's it's disappointing to hear that, because there should be access to counseling. For anybody you know, there should be multiple tiers of counseling or options available, especially to those going through any type of cancer journey. That was something, and I'll be honest, during the pandemic, it was extremely hard to find a counselor, because everybody was starting to go to counseling during the pandemic. There were so many mental health needs during the pandemic, and it took it was really pushing. It was I was constantly making phone calls, until I got to the point where I found a counselor through the neuro oncology office that we were at, that we were, he was being treated at there was a functional medicine department that was separate, and so I finally said, I'm going to look into that, because maybe they have a social worker that works through their functional medicine division. And lo and behold, they did, and she was focused on rare cancers, and she was a licensed she was a social worker. So she wasn't a psychotherapist, she wasn't a psychologist, so she really understood the dynamics of holistic care. And she said, I can't, I don't know if I can get you in right away. And I said, Look, you got to do whatever it takes, because I don't know how long he has, and we really need help. Like, I really had to voice my concern in being a priority to get in based on the needs, and that pushed her over. And so she saw us within two weeks, wow, of that, of that call, and we signed all the paperwork, we gave her all our health insurance, and she was actually the one that recommended seeing us individually and then seeing us as a couple, which I thought was brilliant. It

Natalie: 37:27

is brilliant. What? Yeah,

JJ: 37:28

go ahead. No, go ahead. What did you learn about your marriage and your strength in that time, especially those those last two months after that, that diagnosis where you knew that you were that Mike was incurable?

Unknown: 37:46

Well, I think I reaffirmed something I knew for nearly 20 years, because when he passed, we were at we were close to 20 years together by the time he passed, and, man, we were a good team. We were such a good team. And that was the one thing that I think I it just validated through his entire the only time that things got really dark was when the two, two and a half, three months he was on steroids, which was really very difficult because it changed. It alters your behavior. But other than that, we just tag teamed. We knew how to he helped out wherever he could. We were so good at communicating with each other, and we knew he even recognized. There was a couple of times where he came home one day during the six months he was feeling good, he would drive, he would try to go run errands. He would do some things himself, take the dogs for a walk, and he came home one day and gave me a gift card for a massage, and he said he goes. I know how taxing This is, like we just knew how to read each other. Even during his diagnosis, we just knew how to be there for each other. And I think the only thing that I did, it was something that I learned about myself, and this is very much a caregiver thing, and everybody's different depends on how you are in your relationship. But Mike and I were so good at being there for each other throughout our entire relationship. We knew how to support each other's needs. When one person needed it more than the other. We knew how to how to lean and how to stand. You know? We knew how to dance with each other, yeah, and once he got sick and he wasn't feeling well, really, throughout the entire 14 months, for some reason, I felt like it was my job to be as strong as possible. I didn't want him to see me crying all the time. I didn't want him to see how scared and freaked out I was, because I knew he was leaning on me in that moment. He needed me, and I didn't, and I already knew that he was scared out of his mind, and I didn't want him. Be more scared because he saw how fragile I was internally. So I bucked up and really, like, if I had to cry, I left the room, I would go, you know, anytime we had meetings, it was like, we're gonna be okay, babe, this is gonna be okay. We had affirmations. We had hopeful statements. You know, it we prayed all the time, and for good or for bad. I don't know if that's a good thing or a bad thing that I, you know, that I was that way. I think there were conversations that we could have had towards the end that we didn't have, because neither one of us wanted to give into the disease. We wanted to be feel like, you know, we're not inviting the end in if we give up. So we never had conversations about what he would want from me after the fact, and that is something I regret. I wish I had talked to him about that, but we really just even at the very end, and it's not something I've talked about a ton, but we were in sync even when he lost the ability to speak his last day, we were able to talk like I talked to him, and our eye contact, even the nurse that was with us towards the end, she's like, I've never seen anything like this in my 30 years of being here, because he understood everything I was saying, and our eyes were just locked for eight and a half hours. Well, we sat there, and I was reminding him of everything he'd accomplished in his 45 years here on earth.

Natalie: 41:28

You know, there's never enough time, and there's never enough time, and even now, looking at what our time is, and I don't really care, I'm like, I don't really care. You know, I'm gonna, I'm gonna push us over into after, because after is different. It is the after. Let's talk about after. What happens after? You

Unknown: 41:56

know, I think your perspective on life really changes after you lose a spouse, that caregiver instinct is still very much there, and you can tell, because I've turned it into caring for other cancer patients and doing a podcast to help other people and so you really find a way to meet the needs of Helping people, because it's just so innately ingrained in you, but that first year after he died, was very much the question that really presented itself to me, and what made me realize that I needed to fight for myself was the idea of, if I Don't do something for myself, I will, I will break from this. This will break me. And I didn't want that, and I knew he didn't want that. And, I mean, I slept on a couch downstair. I couldn't even go into our bedroom for a year. I mean, it was just, it was so difficult. But I knew that if I don't find a way to find purpose in all of this, I'm gonna lose myself, and that started with my health, because I didn't even know somebody when I went in for my annual physical after he died, it was probably three months, three or four months after he died, I finally went in, I scheduled my annual physical, and She looked at me, she goes, Oh. She goes, okay. She's like, so you're about 104 104 pounds. And I sat there. I'm like, no, no, that's not right. I'm like, you've got the wrong chart. I didn't even know. I went back to look at the we had live feed and video of his funeral. I went back and was looking at the video, and had not realized how much weight I had lost during those last few months. I had no clue. Had no clue, and that was a wake up call, and that's when I realized I got to take care of myself. I need to start eating right. I need to get back into eating right. I need to start creating a routine. I scheduled my mammogram, my dental appointment, I did all of the things that I had put off. I said, I need to prioritize my emotional and physical health. And then I actually went and found a new counselor that was trained in grief and loss. And I've to this day, God bless her, because to this day, I've been I've been with her for about four years. She's amazing and but I had to do all of those things for myself, because it was the only way that I was going to survive not only his loss, but the loss of children. Yeah, we we lost. I lost a dog about a year and a half after he died, and two of my friends passed away in the last four years. So there was, there's always this need, there's this fight instinct inside of me to survive, and to survive for him and to survive for everybody else who is struggling with severe loss like that.

Natalie: 44:51

And so I want to ask you, it's, it's about moving on, because I would. Want to, I would want to. We're, we're in our lives. We're all about the same age, except for JJ dance, except for JJ

JJ: 45:09

because it, what it says is, your podcast is has morphed a little bit exactly, and yeah, so, I mean, it started as a really kind of a brain cancer was a focus and that type of advocacy, but now what she writes is my favorite parts. The last part it will it says, Now the podcast has morphed, morphed into hope filled show, rising above trauma, loss and finding love again. This

Natalie: 45:38

is really when we get to be girls, yeah.

Unknown: 45:40

But love that it's in sync. I love how you said that in sync. Tell me about that, because it's, it's again, it's

Natalie: 45:47

giving you're giving yourself permission to be happy. And my want that.

Unknown: 45:52

Mike, yes, he would. It's taken me a long time to realize he would want that. It's, it's really challenging. I will say that even though I am open, I have been open the last year and a half or so to dating and meeting somebody, especially because I really do feel like God made me to be a partner to somebody I loved being a wife and I loved being a partner and being alone the last four and a half years has been just the loneliness is wearing thin. Living, living alone in a house by yourself is daunting, and it's not something that I enjoy some people do, but dating especially, I'm 48 now and going through some hormonal changes.

Natalie: 46:42

Nice. Way to put it, my shoulder,

Unknown: 46:44

beautiful new phase of my life, which is such a joy, right? And trying to date in the midst of that has just been, Oh, my God. It's excruciating at times, and and then trying to, you know, to also have conversations. You know, the the idea of being a young widow. People don't. Guys don't get it, yeah, and, and there are some women for widowers that have challenged, have had challenges with it, but guys really struggle, especially if they come from a divorced background, but they have no idea what it means to date a widow. It's very challenging. I've had people say, Why do you still have his last name? It means you haven't moved on. You know, you still talk about him occasionally, that you must be still. They expect you to just because when you divorce, yeah, it's an end. It's yeah, you've made the decision. They've made the decision. It's an end. You know, it's hard for people to wrap their heads around the fact that this wasn't my choice, this wasn't our choice, and I'm always going to love him, so the idea of sharing your heart and not having it completely so, but we, you know, every time I have a story on the show, and that was the whole I think it was more For me to put focus on that blesses

JJ: 48:02

us. The shows bless us, I think, as much, or probably

Natalie: 48:05

more than it's our own private therapy. Yeah,

Unknown: 48:08

exactly, exactly. So every time I meet somebody that's a widow or widower that says, you know, I found love again. I'm remarried, they've been so accepting, it's like, oh, okay, good, okay, here we go. There's hope for me. It's possible. It really is possible, and it is. It's a it's a weird duality. I mean, it's strange because I feel guilty and that I still want something like this, and yet I know that it's good for me, and I know it's something Mike would want the right person to come in and and and help out. And he would say, take care of me. Yeah, you know, put, you know, be there and really, really keep you safe and help you. And so it's a strange It's a strange, weird mix, but it is something that you know, from a caregiver to a widower dealing with grief and loss and being at a young age, you go through these different stages, and I've had so many people say, Do you ever get to this point? Does it ever change? And it does? You know, it never goes away, even when you still have even when you have a spouse that's in recovery, that's in remission, that grief and loss, of the of what was and hoping that it never comes back, there's always going to peace, be a piece or an element of that that's always going to be part of your story going forward

Natalie: 49:33

on a percent. Yeah, so,

Unknown: 49:36

but it's, it's, I'll have to keep you guys posted, because it's, there are definitely some crazy stories of people that I've met. And I'm like, Really, you people are supposed to be in your 40s and 50s. How is it harder than when I was 23

Natalie: 49:51

technology girl, oh, God help us. You know?

Unknown: 49:55

I, oh, I got off of it. I tried. I think it sent me into two panic attacks. I. Said, I need to delete I can't there's got to be a better

JJ: 50:02

way. I tell my boys, my step my stepsons, they're 37 and 39 just go to church, boys. I think that is about the only place you can find a good spouse anymore. Just stay on the

Unknown: 50:12

internet. They actually did. I reached out to the priest that I'm very close to, and I said, Is there any volunteer opportunities at the church? Just need to go back and volunteer at church.

Natalie: 50:26

And they're right, you know, it's in his time, in his time, and it will happen and and the thing is, some like, Okay, well, if there's any of our listeners out there, I'm like, Oh my gosh, Shannon's absolutely a stunner, full stunner, sign beyond and beyond being pretty. Let's just get over this. She's wicked smart. Oh yeah, and that's always intimidating for the boys I know. So be warned this lady, you are such a game changer, and you're out. You're such a carer, and that's why, clearly, Shannon's my best friend and not JJ, but, but it is time for Sister questions. And we are sisters so, and we're all sisters on this call, yeah, and so, Jay, what is your question for Miss Shannon?

JJ: 51:11

Where is Shannon in five years?

Unknown: 51:14

Oh, you've never asked that question. I know. Oh, what

Natalie: 51:19

does Shannon look like, Oh, cool. Oh,

Unknown: 51:22

Shannon, better still look okay. I'm working hard on the wrinkles.

JJ: 51:28

She wants to find love. We know that. But where are you? Oh, in five years,

Unknown: 51:40

the Well, I would love to have another

Natalie: 51:42

dog. I was getting ready to say, I don't have a

Unknown: 51:43

dog. I would love to have another dog. I would love. Do you ever, did you ever see the movie Under the Tuscan Sun? Yeah? Diane Ling, yes, where she has this moment where the realtor that she becomes friends with, she tells him all of these things that she wants in her life. And at the end of the movie, he shows her, he's like, You wanted family, you've got your best friend, and you wanted a baby. There's a baby in the house. You wanted a wedding, another wedding, you just hosted. All they happened in a different way that she expected them to happen, yeah, but honestly, that's what I want. In five years, I just I want the house to be full of energy again. I want to share my life with somebody again. I'm writing a book in a fiction, a fictional way. It's not a memoir, because I wanted to steer clear of that. But I'm writing a book about our journey, and I would love to see that published, and have that kind of take hold. So those are the and I'd like to just remain healthy myself. Those are things that are really important to me. But to have some kind of to have the house full, to have the house full of energy again, I miss that. I would love to see that in five years,

Natalie: 53:05

fullness. I think that's like your word fullness. It is, it is a fullness, and it comes and manifests itself in so many different ways. And I think I pray for you that that happens because I feel, I feel that it will actually so we just speak it into existence.

Unknown: 53:21

Okay, I like that. Always get better at that.

Natalie: 53:25

It's done, it's just done. It's just going to happen. I love that. And then my last question, which is always my favorite, is, what is your favorite guilty pleasure? What is and I've kind of reframed it a little bit in our last conversation that we have with someone else, like this is your self care? What is it that you do just for you? It's not even guilty, because self care shouldn't ever be guilty. But I do love Hallmark and dove chocolate at this moment right now. So what is your favorite guilty pleasure?

Unknown: 53:55

Well, seeing as I'm not a smoker and I don't drink a ton chocolate cupcakes, pastries, they have been my go to, especially if I can put my sweats on and have a really good cupcake and throw on some weird, cheesy rom com. Yes, that

Natalie: 54:20

is why she is my like. That is why she's my friend. Tell you I you know what I will say this, I was at a conference last week, and I went to I went in. I was joking, because we love CVS, and I went in there, and I was like, I can get everything I need. I'm like, I'm getting shampoo. And I'm like, Oh, these dove chocolates. And I'd forgotten that the dove chocolates have little friendly messages on the outside, and they're so friendly. And so every now and then I feel like I need reinforcement times like three or four or five, and so I'll hold up my rappers, and I'm like, Oh, that was a good one, as I eat it and open the next one. What happens? I. I've had to limit my dove chocolates, but I keep my little wrappers every now and then, and I post them on Facebook and be like, right? This is a good one. Thank you.

Unknown: 55:08

Death. I love that. I know I last night I had yesterday was a very exhausting day, and I remember I finished dinner, and I'd had a really healthy dinner, and I had these really amazing chocolate chip cookies from this little bakery. And I said, I'm only going to have one. And I finished the one, and I said, Ah, screw

Natalie: 55:29

it. I don't care. This is the best part about being in our 40s and almost 50. I'm going to tell you right now, I've turned 50 in December, and I'm like, and the answer is, screw it. I'm going to have the extra one, and it's okay, and I'm totally okay with it. No one got hurt. And you know what? I'm totally fine. So you know, Shannon, thank you so much for being with us. This was so much fun. We absolutely love you. And when you get that new puppy, make sure that gets pushed down to us, even if you're just loving on some puppies. So just remember, you may have, you may find a puppy in our in our rom coms in a different way. Yeah. So just remember, you know how rom coms work, so I'm writing it for Hallmark right now. All right, guys. Shannon, thanks so much for being with us and Jay, until we confess again, we'll see you next time bye bye. Well, friends, that's a wrap on this week's confession. Thanks so much for listening in to the podcast, but before you go, please take a moment to leave us a review and tell your friends about the confession show. Don't forget visit our website to sign up for our newsletter, as well as connect with us on Facebook, Instagram, LinkedIn, Pinterest and Twitter. You'll also find the video recording of all of our episodes on the confessions website and our YouTube Channel. We'll see you next Tuesday when we come together to confess again. Till then, take care of you. Okay, let's talk disclaimers. We are not medical professionals and are not providing any medical advice. If you have medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I at confessions of our reluctant caregiver have taken care in selecting the speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this show 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 a reluctant caregiver podcast. You.