Our Mom, Her Health, and the System that Failed Her and Us

This episode is a deeply personal conversation about our Mom's healthcare journey - from the early signs something wasn't right to the moments that felt confusing, overwhelming, and uncertain.  

We share what it was like navigating the system as daughters - and as physicians - while offering insights on how to move through a system that can feel incredibly difficult to navigate.   

This story was too important to fit into one episode.

We pause this part of the story the moment everything shifted...when we learned she had metastatic cancer and were trying to get answers, including a PET scan.

This is where the reality of it all began to set in.

Part 2 continues in the next episode.

🎙 The Sh!t Sandwich Generation is hosted by sisters MaryBeth and Susan — raw, honest conversations about navigating life between aging parents, growing kids, and everything in between.

📱 Instagram: @marybethp6

 💻 pursuelifecoaching.com/podcast-1 

🥪 Have a sandwich story? DM us on Instagram.

Transcript

Tempo: 120.0

SPEAKER_00 0:00

Welcome to the shit sandwich generation. This podcast is for anyone stuck in the middle of caring for aging parents while raising kids of their own and navigating careers. I'm Susan and I'm here with my sister Mary Beth. And every two weeks we will bring you raw, honest conversations about the chaos, the comedy, the crying, and the crap no one warned us about. From healthcare battles to family drama to unforeseen career paths to those quiet moments when you just want to scream. This is where we talk about it. Because if we're going to survive the sandwich, we might as well make it a damn good one.

SPEAKER_01 0:43

Absolutely. And today's episode is is a bit personal. Unfortunately, our mom isn't here to tell this story herself. I would love if she was, but she's not. She died back in September of this past year. And there are parts of what we went through with her navigating the healthcare system, sitting in appointments, sitting in the hospital, making decisions that hopefully none of none of you listening ever have to make, that I kind of understand very differently now than I did while we were living it. You know, you really don't when you're in it, it's it's really tough. You don't know what's gonna happen, you don't know if the treatment's gonna work. And as a physician, I think it's it's even it's even tougher. Tougher than I ever ever really expected. You know, as a physician, we understand the medical side of things, but when you're the the daughter or the the son sitting there, you're not her doctor, but you're still you still want to be, right? You still want that care, you want the you know the diagnose, you know diagnosis, you know what's going on. It's it's just entirely a different situation sitting there with a a parent versus a a patient. And and in her case, you know, it it's tough knowing medicine and and feeling powerless, like I, you know, feeling powerless, just powerless that it's she's got a diagnosis that has to do with my personal field, and I can't help her. And I I I there was so many moments during her course that I I felt absolutely powerless. I felt like, why me? Why why my field? Why did why did it have to be my field? And I can't help her. God, I can't, I can't help her, I can't treat her, I can't cure her, I can't I feel failed as a physician, failing as a daughter because I can't help her. Uh it was just it was the I've never set felt so so powerless in in my life. And at the same time, I, you know, wanted her to to be steady and strong for her and for my dad, who this was devastating for. And and there you there I am, there you are, Susan. We're we're both physicians feeling utterly powerless. And just it was just a feeling I've never never had in in my my life. And this isn't this this episode isn't about you know blame or guilt. It's about what it's like to love someone, especially a parent, uh, through a system that is just so complex now, it's overwhelming. Um it's it can be isolating, and it's just a very difficult system to to navigate. Do you agree, Susan?

SPEAKER_00 3:46

Yeah. So this is very personal. And like you said, it's not about pointing the finger or anything like that. It was really hard. You know, it was I often thought to myself, and those of you that are in medicine know, like if something is gonna happen to you or your family member, it is gonna be bizarre, it's not gonna be the norm. You can almost count on that. And that's what this situation was. And I remember, and this is terrible. I mean, I have guilt around it being like, oh, thank God, it's not GYN and it's Durm. You know, I'm sorry, Mary. Yeah, yeah, I'm sorry. But you know, there there were definitely moments that I was like, I didn't want it to be either for sure, but I was like, oh my God, it would be 10 times worse. But I think the other thing that I thought while we were going through it, Mary, and we were both trying to navigate this incredibly difficult system was, oh my God, we're both physicians. And we can't navigate it. What about those people that aren't physicians or aren't in healthcare? What are they doing? And I know they have physicians like us. I mean, we both go the extra mile for our patients, if not the two miles, but even then, it's it is an incredibly complex system that leaves you focused on the system and the doing and not necessarily being there as a a daughter or for your loved one. But wow. Yeah. You know, I mean, this is not all gonna be heavy, but a lot of it's gonna be heavy. And I think we want to call it to the attention of you know our community here that if you are living this, we know this is this is not easy.

SPEAKER_01 5:40

Yeah, yes, it's not easy, and yes, this is gonna be a heavy, the next two episodes are gonna be a little heavy, but know that you know, if you're going through this, we hear you, we feel you. And hopefully we can provide some of our experience on how to navigate things maybe a little bit better, how to facilitate things a little bit better. But it it's a it's it is a difficult system and it's a complex system. Whether you're a physician, whether you're not a physician, it is is tough. So let's kind of start from the beginning, right, Susan? Again, we're going back to that. When did you start to feel like you were in that shit sandwich, right? Well, I think it starts with me, unfortunately, right, Susan?

SPEAKER_00 6:21

Yeah.

SPEAKER_01 6:22

Again, I have four kids. I'm busy, I work, divorced, so it's it's me. I have the responsibility. And my mom came to me, maybe it was summer or at some point. She had a lesion, she wanted me to take a look. I looked, you know, didn't look like much. You know, we always have, I mean, you you know, as a uh Susan, as a physician, you have people always uh asking you off the the cuff. And it's a lot of times it is your family, a lot of times it's friends. What is this? Or what asking a medical question, right? And and I I honestly sometimes hate answering them because you're biased, right? Susan, you're biased when you're answering a question for somebody that you know, but I I it didn't look like much, you know, it looked like maybe a cyst. I don't know. It was in an odd location. I mean, it was on her ass, you know. So I didn't want to, I didn't want to say, let's face it, I'm gonna say buttocks. It was on her buttocks, but it was on her ass, right? Well, we all thought was a little funny, but you know, in retrospect, she gets she gets cysts, it would look like a cyst, not a big deal, you know. Probably said, you know, let's keep an eye on it, maybe come see me. She's stoic.

SPEAKER_00 7:35

And she doesn't always like she's not always telling you what's going on. So I mean, let's let's let's dial it back there, Mary. And I I think any of us that are in the shit sandwich generation know, you know, kind of the generation that came before us was a little stoic. Yeah, they didn't, they weren't always forthcoming, they kept it to themselves. So, I mean, I think in all fairness to you, I mean, there was some degree of that going on too.

SPEAKER_01 8:02

A hundred percent, a hundred percent. And, you know, so August, September, October, I think she came back to me, showed it to me again. You know, she had a Halloween party, it looked the same, no big deal.

SPEAKER_00 8:13

You know, she showed it to you at the Halloween party, I think. I think maybe I got my eyes on it then too. Like we're having a Halloween party. Can you look at my ass?

SPEAKER_01 8:21

That was exactly it. All right, so took a look, you know, it looked, didn't look too much different. Mom, yeah, you probably should get into the have dad bring it to the office. You know, we probably should do a biopsy, take a look. I think another month went by, maybe December. She was over here. Probably, I think we were probably Christmas.

SPEAKER_00 8:40

We've got to look at it again.

SPEAKER_01 8:42

Exactly. I think we were making Christmas cookies, all right? So, and at this point, I think she says it's it's gotten larger. So I'm like, Yeah, I better take a look and you know, we'll let's get you into the office. So take a look. And at this point, it's grown. And I'm like, oh Jesus, you know, why didn't I just make the time to see her and bring her into the office? Now it's two centimeters, whatever, maybe a little less than that. I should have just made the time, I should have taken the time out of my my life and just made the time, made her come out and just taken a look. So now got to get her into the office, gotta biopsy it. So got her into the office right away, biopsied it, came back as a squamous cell. So shit, right?

SPEAKER_00 9:25

Squamous cell carcinoma, which is a skin cancer. It's a non-melanoma skin cancer. I think the other thing that you're not talking about is mom loved the holidays. And if it was something was going on over the holidays, she would always say, I'll do it after the holidays. So, you know, we had some of that. So go ahead.

SPEAKER_01 9:46

Yeah, so and again, just since I'm a dermatologist, should should kind of interject here on the squamous cell carcinoma. Typically, squamous cell carcinomas are pretty much harmless as long as you get them taken care of. They're the second most common type of skin cancer. But again, as long as you typically get them taken care of, they're not in uh certain areas like the the lip or the the back of the hand, can sometimes they can be a little aggressive in certain locations, but typically this get them cut out, no problems, good, good to go. It's when you don't do take care of them that they start to become an issue and can eventually spread. And but anyway, so squamous cell, okay, came back as a squamous cell, let's get her in, get it, get it excised, get it cut out. So had a a colleague, a friend uh who was a Moes surgeon, got her, didn't want to she we got her in as quick as we we could, which was in January. Um again, she was kind of resistant, wanted to wait until after after the holidays. Okay, we'll wait until after the holidays. Got her in. My colleague was uh very accommodating, very lucky to have him as a colleague. He took care of great care of her, got it, got her in, excised it, came back to me and said, There's a little, a little inflammation in it, but it looks like we got the whole thing. I'm gonna just send it out for additional pathology. He was a MOS surgeon, gonna send it out for additional pathology. And we we did and came back, is all clear, nothing there. She's good to go. This was on her ass, right? So she's got an excision now on her ass. Healed, and yeah, and that was that, right? So felt felt good, good, all good, okay, normal. Yeah, got through my cell. He got through, she had a squamous cell back years ago, got through this, you know, not a big deal. Let's move on. So we went on, right? And then I think it was Valentine's Day or Easter, because it had to be a holiday. Exactly. I think it was closer to Easter. She wanted me to again, she I don't know, I don't know how long it was there, but she said the scar isn't healing right. And this was a few months later. So I know I knew it had healed because I had looked at it afterwards for her at some point, probably her birthday or Valentine's Day. And she's like, the scar's not healing. Uh there's a lump there. Can you take a look? And so I take a look, and uh yeah, it was probably Easter, and yeah, there's a uh not what we call a nodule, so lump there. And I'm like, yeah, this isn't right. Let's get you back in for a biopsy, and this time kind of moved things along because it wasn't wasn't the the normal thing. So got her back into this colleague, did a did a biopsy, and it was a recurrent squamous cell carcinoma. So at that point, we had the squamous cell, has now come back. All right, we need to, we need to maybe take this up a notch, can't go back to that colleague. Let's let's go. I mean, I had talked to him, we both felt it was best to go down to the city, see someone in the city. Again, me, it's my field, so responsible for all of this. So now kind of felt responsible. Felt responsible, good and good interjection.

SPEAKER_00 12:53

The family was looking toward you for advice. So, I mean, uh if other people know who are in the medical profession, that people look towards you for for advice when you're in the medical profession.

SPEAKER_01 13:03

Absolutely, which okay, not a big deal. So I picked the best surgeon I knew that I've had referred to many, many, many times, well known in the field. Took her to see him, and first of all, we had to wait hours. Again, everyone knows this is a pain point for the medical system. How do you get through those hours?

SPEAKER_00 13:21

I tend to love to run on time, but I'm not so on time when I'm running in the clinic because I love to answer questions and spend time with my patients. But I love to send it in. But doctors don't really love that part about me.

SPEAKER_01 13:34

So I love to spend time with my patients too. She does too. I'm a little quicker. But uh anyway, so you know, this this is kind of sets the tone for the rest of the this whole time. She hates waiting, she's impatient, doesn't want to be there, doesn't want anything, and it's on her ass. No, no, no, you know, not an ideal spot. So every time she goes anywhere, she's got to pull down her pants, right? So not ideal. She's modest. Yeah, she's modest again. That generation.

SPEAKER_00 14:00

We're still waiting to have the um, you know, the sex talk.

SPEAKER_01 14:03

We're we're still waiting.

SPEAKER_00 14:04

Exactly. You know, uh guess we won't be getting that.

SPEAKER_01 14:08

No, we're not getting that one. So uh he finally finally the fellow comes in. It's not the actual doctor. Fellow comes in, takes a history. He ends up writing that she has a melanoma in the note. I don't know why, but gets the note wrong. But, anyways, she gets surgery done. She has to go into the hospital, so we have to wait a few weeks, gets the the excision, they excise it with a very, very large, large excision. Do a flap, close it up, looks good, pathology is negative, look like they got it all, so we're good to go. Hindsight, probably food should have pushed. Yeah, exactly. That's a good one. She doesn't like it. Uh, should have pushed for some imaging at that point. But again, I'm a daughter here, trying to juggle the the the two, trying to keep a clear head and probably miss.

SPEAKER_00 14:56

Yeah, but let's face it, nobody would have done that. Nobody, nobody did recommend that. I mean, no, nobody recommended it.

SPEAKER_01 15:02

So no, yeah. So she leaves, and I think this is where the shit starts in this whole thing is there's no follow-up. No follow-up. Doesn't go back to to have any follow-up to her for the physician to check the site. She starts to have an issue with the the wound healing, with the excision, the incision area healing. It's not healing well. She speaks with a nurse, never speaks with the there's never insight from the doctor because she doesn't follow up. There's no follow-up in the system with the doctor. They don't even ask to see her back, kind of push her into trying to find wound care locally. And so Susan kind of takes over the role here because she's closer to my she lives closer to my parents than than I did. So she kind of picks up the now. It's her turn. Tag. Tag is it's a little bit of a tag here. So tag, I got the doctor for I don't think, you know, got the doctor, got the excision. Now unfortunately.

SPEAKER_00 15:59

Now we're into wound care.

SPEAKER_01 16:00

Yeah.

SPEAKER_00 16:01

You know, and you know, again, fortunately, Mary and I know the system, and even then it's really hard. I mean, anybody that's done wound care understands, yeah, it's hard to get wound care doctors, and I really do feel for my colleagues because they are are stretched really thin. And then this is an area that it's tough to take care of. And I think, you know, the incision itself, Mary alluded to, was really like really big. And so it was a really tough healing. Uh, but it it was going fairly well. And I, you know, again, we are in the shit sandwich, and there are people that there are those of you out there listening to us that were doing this all themselves. We were really fortunate. Our dad really picked up a lot of the wound care help and was really good at it. I, you know, I jokingly told him that if he wasn't an electrical engineer, he certainly would have been, you know, a phenomenal in health care. Absolutely. You know, so I mean, he did. We were really, really lucky. But again, those of you that don't have that, you know, I I can totally see how this would be such a drain taking time out. I was taking time out to try to go to those appointments again because they didn't really understand this, it was a little unique. Why didn't it heal? There were a lot of questions. Mary and I were in constant contact.

SPEAKER_01 17:25

And uh, you know, in the middle of all this, Mary, we were we we were planning a trip for my dad's what was it, 85th, 85th birthday. And this trip was, and this was part of uh scheduling the sur her surgery here. She wanted to go on this trip, had to go on this trip with my dad. It's 85th birthday cruise with the whole family. Whole family, whole family, siblings, grandkids, yeah, children, grandkids, everybody. So this trip, I think, was already planned, and she wanted to have the surgery, wanted all to be all healed before she went on surgery, on went on the cruise. So, but she wasn't gonna be healed, right? It didn't heal up, didn't it wasn't going as expected. So she's got this wound, it's not healing. Now she's got what's called a wound vac on it. Okay, so she's walking around with the cruise ship, the cruise ship with a kind of a vacuum on her ass, sucking out fluids. Okay, and again, my dad, really good, really good at this. And so we make it on the cruise. So a little bit of a shit show getting getting on the cruise ship, but I think we'll eliminate that.

SPEAKER_00 18:33

That anybody that's you know got siblings and understands that there was some level of drama which we can tease out in another episode. You all might enjoy dealing with siblings. But at any rate, you know, we're fortunate to go on this cruise. We're fortunate to be able to celebrate my dad's 85th on the cruise. We're fortunate that she's well enough to go on the cruise and have, you know, managed to figure out how to do wound care on the cruise. Again, I wouldn't advocate to anyone else who didn't have a uh medical person in the family to do this, but you know, again.

SPEAKER_01 19:11

Yeah, and again, I think, you know, this is one time in your life when you have to, you know, you have to live your life, right? Life is short. So take take the time to be with family if if you get along with them. If you don't get along with them, let things go and and try and try and get along and enjoy life and enjoy the moments, even if they're not perfect. Enjoy the moments that you you you have and that you you can.

SPEAKER_00 19:36

So we're anyways, let's get back to the I thought we were gonna, you know, we were gonna get one of those moments right here. Oh yeah.

SPEAKER_01 19:41

I thought we were gonna have a nice, calm, you know, calm little sun, some drinks, a little family time, a little dinner, it's big enough that we can. We were in Bermuda, so we're gonna be in Bermuda for a few days, so perfect, right? Uh yeah. Well, not so perfect, and that's okay. Well, I'll let you kind of pick up from here.

SPEAKER_00 20:03

I'll pick up from here because you know, when things are going well, they're going really well. And then when they're kind of going down the drain, they go down the drain. Anyways, I I still I still say I didn't have seasickness, although my kids say I did. So I I start puking within 12 hours, right? So I'm I'm in the room. This is great, this is just what I need. And my daughter comes to me, and now mind you, we're, you know, there's four siblings. We told you how old the kids were. So they're fit, they're a little on the older side. And she comes to me while I'm puking and says, uh, you need to take, we call my father Papa, you need to take Papa to the infirmary. And I said, What? Are you sure you don't mean grandma? And she said, No, I mean Papa. He's in a lot of pain, he's having a lot of stomach pain. And I said, So am I. And she said, No, he's he's having stomach pain. And I said, Okay, where is everybody else? Why does the puking person have to take him to the infirmary? I can't find anybody else. It is a big cruise ship. So, you know, I said, Well, can you walk him down there? And she said, No, he's in that much pain that he needs a wheelchair. And that's when I knew, uh oh, holy shit again, we're in for it because my dad never asks for a wheelchair. In fact, we just went to the airport and what we were online three hours and he refused to ask for a wheelchair. No wheelchair. So I knew we were in trouble. So the long and short of it is he has a hernia while we're on the ship. So we're just going from bad medical situation to bad medical situation. And he has to get off the ship in Bermuda and go to the hospital there.

SPEAKER_01 21:50

So again, you know, not so bad. Yeah, I was just gonna say actually, you know, experience with uh healthcare there was not so bad. He got to the hospital. Got his imaging, got in and out pretty quickly. I actually fairly, fairly impressed. So, yeah, and he has a hernia. But and so now, you know, we've got two parents that are a little bit infirmed.

SPEAKER_00 22:15

Yes, that's the word. Infirmed. You know, I think that was one time though, Mary, that we did take some time for ourselves. And we were in Bermuda. He was still off the boat, and we said, let's just sneak to lunch. And I in my my mind, that was one of the most peaceful moments that we had. It was you and me and dad. Yeah. And it was pouring rain, and the kids were calling us to ask where we were, and we ignored them. Yeah, we did ignore them for a little while. But it's okay, they survived. What we learned was they survived.

SPEAKER_01 22:48

And I will tell you, that was probably one of the highlights of the the crew is you know, up until that point in time, honestly, hadn't really spent all that much one-on-one time with my dad. I don't think I had ever actually had lunch with my dad, kind of without my mom. Not that I didn't want my mom there, but it was just it was a it was a nice lunch until until our kids showed up. No, that's just kidding. But then our uh the kids showed up, they were in their ponchos, they were all dry, but they were they were having a good time, which was was nice to see. And my mom was back on the ship with fine, doing well with uh with I think my brother was still on the ship. So we navigated through through that cruise, and uh again, I wouldn't say it was ideal, but I think, you know, in in hindsight, it was good for my mom. My dad. He said he'd never take a cruise again. Yeah. But I again that's what that's what life is about, right? It's about the memories. And you know, this journey has been been there's been memories, but it's there's been a lot of a lot of down, down and ups and ups and downs, I guess is what I'm trying to say. So anyway, as we get through the the cruise, wound is was is all healed at this point. She comes back, it's it's pretty much almost healed and good to go. And I I would say thing life again. We're back to He does the hernia surgery. Oh yes, he does the hernia surgery. Yes. He gets so he takes care of himself, he gets taken care of, and we're back to normal, right? Back to that so-called normal life where we're we're doing kids and jobs and trying to manage our our our yeah, our own lives, which again, not so easy, honestly. And again, we'll get into to you know, how do we how do you take care of yourself? But anyway, so I would say we were good for a while, right? Looking back on it. We were good until I would say it was probably May, around May, maybe it's Mother's Day.

SPEAKER_00 24:54

Oh, it's always, it's always a holiday. Good call. It's season. It's Mother's Day. It is Mother's Day, and yeah, it's Mother's Day. Um I have something in my groin.

SPEAKER_01 25:06

Yeah. She wants us to take a look at something in her her groin. Or I she might have asked me first.

SPEAKER_00 25:14

Now I'm panicking because it's a little closer to my area.

SPEAKER_01 25:17

Exactly. So, and again, the question is, Mom, how uh maybe I didn't how long? I probably asked her first. How long, you know, doctor and me, how long has it been there? And don't really get a straight answer. And that was typically, you know, again, that kind of that generation. Let's kind of hide things until we can't hide them anymore. Uh not everyone, but I would say that's more of that generation. So I don't really get an answer. Maybe a month could be longer, but she's got what she thinks is a nodule in her groin. So I think we bring her into the good old bathroom because that's the exam room at the house. It's got the best light, so bring her in. I don't know, maybe it wasn't the bathroom. But, anyways, so take so again, have to not to be, you know, uh, not to be uh I don't know what to do. You know what you'd want to be doing though, asking your parents to take their pants down. That's what I'm working for.

SPEAKER_00 26:14

For the hernia too. Yeah. FYI.

SPEAKER_01 26:16

Oh, yeah, that was, yeah, yeah. One thing on your mom, it's another on your dad. But anyways, we'll move on. So pull pull take take a look, and I think at that moment, my sister and I, we were both there, and I think we looked at each other, and it was it was really I don't know about you, but I think my heart just about dropped to the to the ground. It was a an oh oh shit moment. What what am I looking at? What is this? And it wasn't even what is this, it was uh what do I feel under under that nodule? And it was just I've never seen this before. That was the moment where I'm like, this is this can't be happening. This is my again, my field. I've never seen this in my life. Why? And Susan, I don't know if you felt the same way when you saw it.

SPEAKER_00 27:11

I mean, I think we both felt like, holy crap, I've never seen anything like this in my entire career. And I I mean, obviously, you know, I'm a little older. We established that last time, but you know, almost 30 years in healthcare, and I had never seen anything like this in the groin. And you know, people would come in, but this was nothing short of horrific. And I think we both looked at each other and knew we were in for I don't know that we knew what we were in for, but we knew it wasn't good. Yeah. And I think at that moment we were like, this is this is gonna be this is gonna be a challenge.

SPEAKER_01 27:51

Yeah, I I don't at that moment it was just, oh shit, now what? I think it was the the, you know, I don't think we really knew what any of what was gonna transpire from from then on, but knew it was not gonna be an easy road. My mom, I don't, you know, didn't she was a little, uh, I don't want to say oblivious, but uh, you know, not uh again, not in the medical field, but not not too not, I don't know, she's not wasn't very emotional at this point, so hard to gauge what she was thinking. And uh hindsight, you know, probably didn't even ask the question at that point. Mom, how you feeling, you know, you know, her emotions, you know, asked the other quite medical related questions, but I think at that point was it was just gonna be uh uh difficult. So again, my field, my responsibility. So tag back back to me. So who do where what I need a biopsy, right? Need a need a biopsy now. I believe I sent and thinking back, I guess I I sent her right back to the same yeah, same colleague.

SPEAKER_00 28:59

We were fortunate again because you had colleagues. So, you know, that's the upside of all of this is you know we knew where to go. Yeah.

SPEAKER_01 29:09

And I and again, if you're in the medical field, a highly, you know, it's always nice having those colleagues to to help out. And, you know, I hope everyone feels the same way that's in the field that they're willing to help a colleague because it does really make 100% of the difference. And and for for everyone out there, you know, my patients, I always try and fit fit in as much as I can. But anyway, so got her back to the same colleague, did a biopsy, and this time it came back as metastatic squamous cell carcinoma. Again, just bizarre. Bizarre, had never seen anything like this, and she she had a very aggressive type, it was very aggressive, started getting multiple nodules, had a mass underneath, never, no reason to have this. No, you know, kept asking myself, why is she getting this? No reason, no immunosuppression, which you can get aggressive squamous cells with. No reason, no reason for this, but she had this aggressive squamous cell. And now the clock starts ticking. So, all of you out there who are are going through this know what I'm saying when the clock starts starts ticking. Whether you've had somebody that has had cancer or you've had cancer yourself, you know that feeling of, oh my God, I gotta get in with the doctor, I gotta figure out what's going on, right? And we we we hear you and understand, and that's exactly how we felt at that moment. So it was literally, okay, we need to get and medical mind starts moving. We get why we have to get imaging. Where is it spread to? What's what's the next steps? So I think this is really where we hit hit the the medical system. I mean, it we we had some bumps in the road with the the the physician with the no follow-up, and but I think this is where we really start to get into the complexity of the system of the system and how it really isn't working correctly in the insurance companies and how difficult it is to get prior authorizations, even you know, real see it as a physician. But when you're on the other side, you really start to see the system is is really broken and does need fixing. Not gonna talk about that in this podcast, but we get into it in a later episode.

SPEAKER_00 31:31

And I think that's why we're talking about it now is because we want to validate that that is an incredibly time-consuming part of working your way through the medical system appointments, insurance, you know, if you're lucky enough to have insurance that covers it, you know, where can you go? Who do you need to see? Uh what other doctors do you need to see? And it becomes just this I guess bohemoth is, I guess, a good word, yeah, of a of a task.

SPEAKER_01 32:03

Absolutely. And I think, you know, part of why we're doing this podcast is to answer some of the questions. How do you navigate the system? And, you know, how do you bring the care together? Because there's a lot of pieces that that come into play. And I think that's that's part of what we want to do here is is help facilitate some of some of the discussions and how to how to do it. So she needed a PET scan, and I tried to facilitate that. I asked my colleague to write for a PET scan, which he did, but then could not get it done, couldn't get her, good, couldn't get it done, needed prior authorization, couldn't get her in to get a pet scan. Got canceled, couldn't get her in to get a PET scan. So we were again, you know the clock is ticking, we're trying, we're trying, you know, but couldn't do it. So in the meantime, trying to find the best, you know, medical oncologist that we can. And, you know, care is different. Uh, this is the, you know, the care is different in rural areas, suburban areas, city areas. It's different. Good, bad, you know, not to say here, but you want to find, I think this is where I say you want to find a physician that's well a physician that's well trained, that has the background, that treats whatever kind of cancer you have or medical issue that you have that has experience with it, a facility that is well a documented facility that does well and that has the backing. But I think again, it's the the background of the physician. Are they well trained? Do they have the experience? And there's differences in physicians versus a physician assistant and nurse practitioner, which I think a lot of the population doesn't understand. And there's I'm not putting down physician assistants or nurse practitioners, but there's a big difference in training and experience. And I think it's it needs to be more delineated what that training is and what the experience is. And I think it's important when you're dealing with more complex diseases and conditions and cancers, you really want to see a physician, you want to see an expert. Yeah.

SPEAKER_00 34:18

I mean, I think we we learned that. I remember, you know, I took her to her first set of appointments, and you know, we tried to stay local because again, that was the wishes of of our parents. They didn't want to travel down to the city. When I say city, I mean New York City. You know, it's an about a 90-mile drive for them, which was understandable. So we said, okay, you know, we're gonna try to. And I I remember it was kind of funny, but not so funny. You know, we saw the medical oncologist who was like, ooh, you know, this is bad. Why don't you see the radiation oncologist? So then, you know, to their credit, they set up us up with the radiation oncologist. I saw the radiation oncologist the same day. They said, ooh, this is bad. I think you should see the surgical oncologist who we couldn't see that day. We went to see the surgical oncologist, I think about a week later. I think you went to the point. Yeah, yeah. And uh the surgical oncologist said, Oh, this is bad. I think you should see the medical oncologist. And yeah, I mean, I think we knew it was bad. It's kind of humorous now, but but you know, again, that was the experience, I think, to your point, Mary. And and each one of those appointments, you know, we were at, and it we we were were both working full-time at this point. I think that's why we're talking about it. Is it was it was a really challenging time. Yeah. And she had aggressive disease. So each time each day that went by, this she'd had a volusion that opened up and and became worse.

SPEAKER_01 35:44

And so even it was just spreading, it was rapidly spreading, and we couldn't get the PET scan. My dad, luckily again, was working on getting the PET scan approved through an insurance, but was weeks out to get a PET scan. But yeah, I think the the the going from the medical oncologist to the radiation oncologist to the surgical oncologist was like, Are you kidding me? Are you serious? Like, we just saw the medical oncologist. It wasn't funny, but it's it wasn't funny.

SPEAKER_00 36:14

And then when you're in it, you're like, Yeah, this is not and you're frustrated, right? I mean, I think that's one of the things, right? You're overwhelmed, you're frustrated, you've you're fearful. I mean, this is your your parent, your loved one, you're fearful, you're not getting answers, all those emotions. And, you know, again, we're physicians, so we understand the language. I can't even imagine for someone that that didn't understand the language or doesn't have someone to advocate for them. And this whole time, obviously, you know, our kids are just doing their own thing, right? Yeah. Um, and this is the hard part about the sandwich generation. So there's a lot more to this story, Mary, yeah, that I think we we probably want to tell.

SPEAKER_01 36:59

Absolutely. I think, you know, the this journey, this is just the beginning of this this story. Whether you want to say it gets worse, it does. It gets it gets a lot worse. But again, I think here we want to just pause for a second and kind of say, you know, if you are in this this situation, you're not alone and your feelings are are valid. The system is difficult, it's frustrating, you have to take it one step at a time. You do have to have, you know, you do have to advocate for your if you're the patient, you have to advocate for yourself. If you have a friend, if you have a sibling, try and bring that friend or sibling with you so that you do have an extra set of ears to help help you through. Because I even as a patient, I know you when I'm a patient, I don't hear everything. It doesn't, it goes in one ear and out the other ear. So it is nice to have somebody with you, but with your insurance company, you do have to advocate for what you want. They're gonna decline, they're gonna try and push back and decline. And you need to advocate for yourself. Takes time and it's not an easy thing to do, but you you do have to do it if you want to get the the care you want to get. And I think the other thing I want to stop and kind of stay here, say here is if you're not happy with the care that you're getting, or you don't feel comfortable, you don't feel like you're being heard, being heard, or yeah, I think it's being heard, get a second opinion, go elsewhere. Most insurance companies do allow it. Don't, you know, don't hesitate. I think that's really important. And I think a lot of more people are doing that nowadays, but I do think it's important. And I'm not gonna put down local facilities because I do think there's a lot of good, good local facilities and physicians, but sometimes you do have to go where there are physicians that are treating these these diseases more frequently, just they have more experience. There's trials that you can get into for some of these diseases. Yeah, which we'll get into. So you can get into trials, which are helpful for some cancers that are more aggressive and that we don't have good good treatments for. So you have to ask the questions, and trials is a question that you do need to ask about because there are a lot of trials that are out there. And if you have an aggressive cancer or cancer that is not uh easy cure easily curable, and so it's a question that needs to be asked.

SPEAKER_00 39:25

Same time, I think the other the other thing I would say is it's important for you if you're doing the bulk of the caregiving and going to these appointments, to have an outlet, to have somebody to talk to and lean into. And also, I mean, I know it's an easy easier said than done, but to take care of yourself, even if that means, you know, trying to get a good night's sleep. But you know, those are the things we kind of forget when we're caregiving, right?

SPEAKER_01 39:49

100%. Take that, take that five-minute walk, even you know to the coffee shop after the appointment. Exactly. You know, take a few minutes outdoors. Just you need to take a few minutes to kind of reset. And and sometimes you need to take the time with with your kids as well, you know, and it's hard, but you you you have to kind of uh try and find that that balance. So I I think you know, we have more coming in the next episode.

SPEAKER_00 40:16

Yeah, it's a little heavy, but if you want to hear the rest of the story, a little more advice around the healthcare system, you know, join us next time. Yeah.

SPEAKER_01 40:25

Thanks. Thanks for listening to the the shit sandwich generation. If today's episode made you laugh or cry or just feel more seen, share it with someone who's in this with in in this with you or not with you. Please leave us a review, get a hold of us, and let us know what you thought, what you'd like to hear. But until our next episode, until next time, remember you're not alone and you're doing better than you think, and you really don't have to eat the shit sandwich.