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Transcript

When the Floor Falls Out · The SH!T Sandwich Generation

• 0:05
  SPEAKER_00: At the end of the last episode, I mentioned getting a phone call from my dad.
• 0:09
  SPEAKER_00: He was asking me about an area opening up where my mom had radiation.
• 0:13
  SPEAKER_00: Part of me hoped maybe it was just from the radiation itself.
• 0:17
  SPEAKER_01: Welcome to the Shit Sandwich Generation, the podcast for anyone stuck in the middle of caring for aging parents while raising kids of their own and navigating careers.
• 0:27
  SPEAKER_01: I'm Susan here with my sister Mary Beth, and every two weeks we will bring you raw, honest conversations about the chaos, the comedy, and the crap that no one warned us about.
• 0:37
  SPEAKER_01: From healthcare battles to family drama to unforeseen career paths to those quiet moments when you just want to scream.
• 0:44
  SPEAKER_01: This is where we talk about it all.
• 0:47
  SPEAKER_01: Because if we're going to survive the sandwich, we may as well make it a damn good one.
• 0:52
  SPEAKER_01: So, Mary, you mentioned getting a phone call from dad.
• 0:56
  SPEAKER_01: Right before that, we had gone on a really nice vacation.
• 0:59
  SPEAKER_01: We had.
• 1:00
  SPEAKER_01: And I mean, this was literally, we went away, and it was you, me, and the two boys.
• 1:06
  SPEAKER_01: We were in a really good place.
• 1:08
  SPEAKER_01: I think the only thing that was up in the air was we were waiting for your biopsy results during that trip.
• 1:15
  SPEAKER_00: That's right.
• 1:15
  SPEAKER_00: That's right.
• 1:16
  SPEAKER_00: I had my biopsy of my my breast for this that was the second one, and I had debated whether to wait until we got back or whether to do it ahead of time.
• 1:25
  SPEAKER_00: And I was just like, I just need to get this done and over with and not think about it, and had to take a, you know, had to had to plan that because had to wear a bandage and knew we would be swimming, right?
• 1:35
  SPEAKER_00: I remember all of this and debating it, going back and forth.
• 1:38
  SPEAKER_00: And then I was just like, okay, I'm just gonna do this.
• 1:40
  SPEAKER_00: And so went on the trip and we did a cruise with the boys and and you know, was a little nervous with the biopsy results, but trying to kind of keep them at bay.
• 1:50
  SPEAKER_00: And mom was doing good.
• 1:51
  SPEAKER_00: So at that point, really not, you know, I think we were at a good place.
• 1:55
  SPEAKER_00: We were a little, you know, kind of relaxed, relieved.
• 1:57
  SPEAKER_00: We were getting some time to kind of re re rejuvenate, rejuvenate, you know, and beach and pool and sun, sunscreen, of course, but and I got my my results while we were there, and everything was normal.
• 2:12
  SPEAKER_00: So that kind of put us at even more ease.
• 2:16
  SPEAKER_00: And we had a really great time, you know.
• 2:18
  SPEAKER_00: We did we uh that was one of the second or third times that we had been on vacation together, and the boys they're easygoing, always up for doing any kind of adventure.
• 2:30
  SPEAKER_00: So we did some buggies, and I think it was Costa Maya.
• 2:33
  SPEAKER_00: What else did we?
• 2:34
  SPEAKER_00: We did some snorkeling, which was awesome.
• 2:35
  SPEAKER_00: It was amazing.
• 2:36
  SPEAKER_00: I think that was at I can't remember which island.
• 2:39
  SPEAKER_00: Rotan.
• 2:40
  SPEAKER_00: Rootan.
• 2:41
  SPEAKER_00: Yeah, yeah, it was amazing.
• 2:42
  SPEAKER_00: Yeah, it was a great snorkeling experience.
• 2:44
  SPEAKER_00: So we had a great time and came home right around my mom's birthday, I think.
• 2:50
  SPEAKER_00: Yeah, that would be her 80th.
• 2:53
  SPEAKER_00: Was that her 85th?
• 2:55
  SPEAKER_00: Oh boy.
• 2:56
  SPEAKER_00: And I think it was her 85th.
• 2:58
  SPEAKER_00: We had also talked about, you know, what we were gonna do for her 85th birthday, and we had tossed around maybe going to Cape Cod whole family in in June because she was doing okay and figured, okay, how can we get everyone, all the family together and not too far?
• 3:15
  SPEAKER_00: And they have a house there, so knew she would be good with that.
• 3:19
  SPEAKER_00: My dad would be good for for that.
• 3:20
  SPEAKER_00: I think they were go actually going up to the Cape in a week or two, so knew it might be a good, good plan to try and get everyone together for her 85th birthday.
• 3:29
  SPEAKER_00: We had done the cruise, which we talked about for my dad's dad's 85th birthday birthday, which didn't work out too well, but we're talking about that.
• 3:37
  SPEAKER_00: But anyways, we we got home on our birthday, and I think my dad texted me.
• 3:42
  SPEAKER_00: I mean, we talked to him pretty frequently, and but he texted me a couple pictures, which is was all along how we kind of Which then Mary texted me.
• 3:53
  SPEAKER_00: Exactly, which was how we kind of communicated, right?
• 3:56
  SPEAKER_00: And he texted me a picture of and said, you know, is this normal?
• 4:02
  SPEAKER_00: There's a little bit more drainage, this area is opening up.
• 4:05
  SPEAKER_00: Mary, uh you know, as soon as I saw it, you know, your heart drops, right?
• 4:12
  SPEAKER_00: Yeah, you know, as a physician, again, when you see things, sometimes you want to try and think positive.
• 4:20
  SPEAKER_00: And I again I'm a really positive person, but it sometimes you just know deep, deep down, it's one of those oh, oh shit, here here we go.
• 4:31
  SPEAKER_01: And you know it's the other shoe that we talked about, right?
• 4:34
  SPEAKER_01: Here we go, it's the other shoe.
• 4:35
  SPEAKER_01: And I think that sinking feeling that you just know.
• 4:38
  SPEAKER_01: I mean, I think after practicing medicine for many years, you know, there's we won't give away how many years that ability to say, yeah, this is this is not good.
• 4:49
  SPEAKER_01: I know this is not good.
• 4:50
  SPEAKER_00: Yeah, you know, the hope was okay, she had all this radiation.
• 4:54
  SPEAKER_00: Maybe it's just from you know, radiation damage.
• 4:56
  SPEAKER_00: And maybe this is just from the the radiation, not the cancer coming back, but it but new, you know, we need it, we need to get a biopsy, dad, as soon as possible, right?
• 5:08
  SPEAKER_00: This looks like it's opening up, need to get her in, have to see see the doctor, do a biopsy.
• 5:14
  SPEAKER_00: You know, you just have to give her a call and get her in as as soon as possible.
• 5:18
  SPEAKER_00: I might have even texted the I might have even texted the s the surgical oncologist at that point.
• 5:23
  SPEAKER_00: We had a little bit of a relationship.
• 5:25
  SPEAKER_00: So got her got her in for the biopsy, and you know, and then there's that that in-between waiting period, which I think at one point or another everyone will experience.
• 5:38
  SPEAKER_00: You know, as a doctor, I've been on one end and obviously been on the other end as a as a patient.
• 5:45
  SPEAKER_00: It's a really difficult space, right, Susan?
• 5:48
  SPEAKER_01: Yeah, I think as you know, as a patient or a family member, you're really holding your breath.
• 5:56
  SPEAKER_01: You know, you're just holding your breath at that point.
• 6:00
  SPEAKER_01: You know, as a physician, you know, when you're waiting for the patient's results, I think again, you're just really hoping for the best, even though you may not you may have a hunch what's gonna happen.
• 6:12
  SPEAKER_01: So that part is never easy for anyone, right?
• 6:16
  SPEAKER_01: It's certainly not easy for the patient, but it's a it's a difficult waiting period.
• 6:21
  SPEAKER_01: And I think in this day and age, the other thing I think about Mary is the portal, right?
• 6:26
  SPEAKER_01: So we've got the patient portals now, which I think are a wonderful thing, but it's not unusual for the patient or the patient's family in this case, because we had access to the portal to get the results before the physician does, right?
• 6:41
  SPEAKER_01: Which is really hard.
• 6:42
  SPEAKER_01: I mean, the physicians are working all day long.
• 6:44
  SPEAKER_01: The the results come in maybe at 10 o'clock in the morning.
• 6:48
  SPEAKER_01: As a physician, I'm seeing patients, so I'm not gonna look at my results until the end of the end of the day, right?
• 6:54
  SPEAKER_00: Get get be able to call the patients with those results at the end of the day, or you know, it might be the morning whenever I have time to get those results back.
• 7:03
  SPEAKER_00: So, yeah, and again, I would call out here, it is really important if you do have a family member to make sure you have access to their portal because they're it's a great way to get information, right?
• 7:14
  SPEAKER_00: You you can get results, you can message their medical team, you can update medications.
• 7:20
  SPEAKER_00: So it is a really important point here to say, you know, if you do have a family member that you are helping to take care of, make sure you have access to the portal.
• 7:30
  SPEAKER_00: That being said, again, going back to I've waited for my results before, I've waited for patient results before, and I had waited for, you know, in the past parents' results, but again, it's it's really tough waiting for those parents your parents' results, right?
• 7:46
  SPEAKER_00: Yeah.
• 7:46
  SPEAKER_00: It's a different, it's just a different feeling.
• 7:48
  SPEAKER_00: I don't know how to describe it.
• 7:50
  SPEAKER_00: And I think we always think the the the worse.
• 7:54
  SPEAKER_00: Do you agree?
• 7:55
  SPEAKER_01: Yeah, I think in this situation, Mary, we were really thinking the worst and starting to already do that planning with the what ifs, right?
• 8:03
  SPEAKER_01: What if this is positive, what are we gonna do?
• 8:05
  SPEAKER_01: So I think that's really the headspace we were in at the time.
• 8:09
  SPEAKER_01: Uh because if it was negative, which we were hoping she could continue with the trial, right?
• 8:15
  SPEAKER_01: But we knew that if it if it was positive, the trial was done.
• 8:19
  SPEAKER_00: Yep.
• 8:20
  SPEAKER_00: Meant the trial failed, you know, immunotherapy was over.
• 8:24
  SPEAKER_00: We were kind of uh at this point up a creek without a lot of people.
• 8:29
  SPEAKER_00: There wasn't there were not a lot of options to begin with, right?
• 8:32
  SPEAKER_00: So so and I I think you know, I did get the the results back before the the doctor did, before my dad did.
• 8:40
  SPEAKER_00: Again, I was the one kind of my dad was checking the portal as well, but I think I saw the results even before he did and called me.
• 8:47
  SPEAKER_00: Uh yeah, I called Susan.
• 8:49
  SPEAKER_00: Not not, you know, again, we I had a little chance of a little hope there, but ultimately knew deep down.
• 8:56
  SPEAKER_00: And again, I think a lot of times as a physician, you do know a lot.
• 9:00
  SPEAKER_00: It's not all the time.
• 9:01
  SPEAKER_00: I do biopsies all the time, and uh, you know, I don't always know what it's gonna be.
• 9:05
  SPEAKER_00: But in this case, I I I pretty much knew what it was gonna come back.
• 9:09
  SPEAKER_00: And in fact, it did come back as a recurrence of of the squamous cell carcinoma.
• 9:15
  SPEAKER_00: And, you know, right there, seeing it in the portal on a piece of paper rather than just thinking it again, your your heart had already dropped when you got the first message from your dad that something was happening.
• 9:27
  SPEAKER_00: But now to see it on a piece of paper, to see it clearly in words that it actually is a squamous cell carcinoma recurrence, that's just again, that floor has dropped, and now you know you're looking at a whole different scenario.
• 9:44
  SPEAKER_00: Life has just once again it's changed.
• 9:48
  SPEAKER_00: It just completely everything has fallen away.
• 9:52
  SPEAKER_00: All those plans that you might have been thinking about are now not sure what on hold.
• 9:59
  SPEAKER_00: On hold.
• 10:00
  SPEAKER_00: Not sure, maybe not, yeah, not sure what gonna do.
• 10:04
  SPEAKER_00: And I'm telling my dad that my dad's pretty strong.
• 10:07
  SPEAKER_00: Um, I don't think he had, and I can't r quite remember the conversation, but uh he's really was probably being strong as well and kind of, you know, I told him, and I don't remember his quite what his reaction was, but it was probably okay, what's what's next?
• 10:22
  SPEAKER_00: He was probably going through the motions step by step, as I think a lot I was as well, trying to be strong, but again, trying to hold my emotions back, knowing this was not gonna be an easy next few weeks, an easy month.
• 10:38
  SPEAKER_01: Um, and so I think there's two things right going on at that point, right, Mary?
• 10:44
  SPEAKER_01: One is all those emotions that you're talking about, and that loss of hope that you know, that I guess we call it anticipatory grief.
• 10:53
  SPEAKER_01: Yeah.
• 10:54
  SPEAKER_01: Yeah, absolutely.
• 10:55
  SPEAKER_01: That's sad.
• 10:55
  SPEAKER_01: So that you know, that sadness, like we had plans, you know, they were gonna go to the Cape, we were gonna celebrate her birthday.
• 11:03
  SPEAKER_01: Are any of these things gonna happen?
• 11:05
  SPEAKER_01: Are we gonna have Christmas together next year?
• 11:08
  SPEAKER_01: You know, so all that anticipatory grief.
• 11:11
  SPEAKER_01: And then at the same time, that knowing that we have got to jump into action.
• 11:16
  SPEAKER_01: Yeah, right.
• 11:16
  SPEAKER_01: So you can't just sit in that grief.
• 11:18
  SPEAKER_01: You have to be, and again, we've talked about this in our other podcasts.
• 11:23
  SPEAKER_01: Her disease was so aggressive, yeah, that the these lesions opened up so quickly that we really didn't have time to waste.
• 11:32
  SPEAKER_01: There was no wasted time.
• 11:34
  SPEAKER_01: We were gonna have to jump into action, get the appointments, get all that we needed to do.
• 11:38
  SPEAKER_01: So there was that that mix of I've got to, it felt more not a marathon.
• 11:43
  SPEAKER_01: It this felt like a sprint, right?
• 11:44
  SPEAKER_00: Like we've got to get our eyes together and we've got to, we've got to start running if she's gonna be okay, because we gotta figure out what the next what's next, what what can we do now?
• 11:54
  SPEAKER_00: And you know, yeah, that anticipatory grief is, you know, I didn't really understand it at that time, but it is really kind of that sadness for the life you thought that you would still have, you know, kind of grieving what might not be in the future.
• 12:12
  SPEAKER_00: And while you're doing that, again, you're caring for your you have your your kids at home, your your work, your job, and then you're start this sprint.
• 12:21
  SPEAKER_00: Okay, what do we need to do?
• 12:23
  SPEAKER_00: What appointments do we need now?
• 12:24
  SPEAKER_00: She's scheduled for immunotherapy.
• 12:26
  SPEAKER_00: Do we need to do it, you know?
• 12:27
  SPEAKER_00: So there's all these logistical questions that you're running through, right?
• 12:31
  SPEAKER_00: And but there's this just a lot of heaviness.
• 12:36
  SPEAKER_00: Uh how did you feel at that moment, Susan?
• 12:38
  SPEAKER_00: Right.
• 12:38
  SPEAKER_00: Yeah.
• 12:39
  SPEAKER_01: I think again, like you said, a lot of uh here we go, right?
• 12:43
  SPEAKER_01: And it's we have a lot of that.
• 12:46
  SPEAKER_01: We go, yeah.
• 12:47
  SPEAKER_01: We have a lot of appointments coming up, and this is where that sandwich generation thing comes into play, right?
• 12:53
  SPEAKER_01: These are we need to go to these appointments.
• 12:55
  SPEAKER_01: Yeah, which again comes into okay, my kids, I'm gonna have to put them on the back burner as much as I can.
• 13:01
  SPEAKER_01: How am I gonna do my job at the same time?
• 13:04
  SPEAKER_01: Because these appointments are gonna come up, and when we get them, we have to go do them, right?
• 13:10
  SPEAKER_01: And the information that we was we were going to hear was too important to just have dad go by himself.
• 13:17
  SPEAKER_01: I mean, he's absolutely smart.
• 13:19
  SPEAKER_01: But again, I think one of the things I always recommend to my patients is you know, have another set of ears.
• 13:25
  SPEAKER_01: 100%, right?
• 13:26
  SPEAKER_01: Because as a patient, it's hard to hear everything.
• 13:30
  SPEAKER_01: So you always want somebody else there or another person, right?
• 13:34
  SPEAKER_01: Because we knew my dad was kind of taking care of my mom at the same time he was.
• 13:39
  SPEAKER_01: So it is really important because what one person doesn't hear, the other person never hears.
• 13:43
  SPEAKER_01: So I always encourage people to bring someone else.
• 13:46
  SPEAKER_01: So again, I think Mary and I knew here we were again, we were gonna have to be going to these appointments.
• 13:52
  SPEAKER_01: What does it mean for my job?
• 13:53
  SPEAKER_01: What does it mean for my kids?
• 13:55
  SPEAKER_01: You know, what are we gonna do for dad?
• 13:57
  SPEAKER_01: Because here we go again.
• 13:59
  SPEAKER_01: So that's what I was thinking.
• 14:00
  SPEAKER_01: And then at the same time, I think I was for me really sad.
• 14:04
  SPEAKER_01: Yeah, like it was just a sadness.
• 14:07
  SPEAKER_00: Yeah, we had spent all this time, you know, getting her to this point.
• 14:11
  SPEAKER_00: We'd been through a whole, whole lot, and she she was doing well and and shit.
• 14:17
  SPEAKER_00: Now we're kind of at square, you know, seemed like square, square one, back, back, you know, in this race.
• 14:24
  SPEAKER_00: We were back to the really to the almost to it felt like to the starting starting line.
• 14:29
  SPEAKER_00: So you know how did you feel, Mary?
• 14:32
  SPEAKER_00: I mean, did you have any anger around that?
• 14:35
  SPEAKER_01: Oh yeah.
• 14:36
  SPEAKER_00: Absolutely.
• 14:37
  SPEAKER_00: You know, did we again, and you start uh uh the second guessing yourself, right?
• 14:42
  SPEAKER_00: Should maybe we should have done something different from right from the get-go, right?
• 14:47
  SPEAKER_00: Maybe we chose the wrong, wrong path.
• 14:50
  SPEAKER_00: And I think that you know, that gets louder as you you go if things aren't working.
• 14:55
  SPEAKER_00: So that was this was the first hint of that that guilt.
• 14:59
  SPEAKER_00: Yeah, that that guilt coming up that did we make the right decision from the get-go?
• 15:05
  SPEAKER_00: Probably not.
• 15:05
  SPEAKER_00: The immunotherapy didn't is didn't work.
• 15:08
  SPEAKER_00: Why, why did we enroll her in this trial, right?
• 15:10
  SPEAKER_00: So did I, was that my fault?
• 15:13
  SPEAKER_00: Or my fault.
• 15:15
  SPEAKER_01: I mean, I I you know, I think that we were both feeling that as physicians, right?
• 15:19
  SPEAKER_01: Because I mean, again, I can't speak to how our siblings were feeling at the time, but I think as physicians, we felt the weight of, you know, some of this responsibility is on us to translate what we're hearing and figure out what the best plan is.
• 15:34
  SPEAKER_01: And, you know, again, we talked about this in earlier episodes.
• 15:38
  SPEAKER_01: Mom was a little removed.
• 15:39
  SPEAKER_01: She never really wanted to make the decisions.
• 15:42
  SPEAKER_01: Um, she wanted dad and us to make the decisions as far as we could tell, and often said that.
• 15:47
  SPEAKER_01: So I guess, yeah, but you know, because we're making the decisions there, there is a lot of like maybe I didn't make the right decision here.
• 15:55
  SPEAKER_01: And, you know, talk a little bit about going to those appointments, Mary, because I think at that point I had to be back at work in Pennsylvania.
• 16:03
  SPEAKER_01: And so you said, I, you know what, I'll take her to these appointments.
• 16:07
  SPEAKER_01: And I was so grateful for that.
• 16:10
  SPEAKER_01: But that meant that you were sitting there hearing this information, hearing, do we do chemotherapy, which we both knew the first time probably wasn't gonna be a good idea, or do we do surgery?
• 16:22
  SPEAKER_01: Or what do we do?
• 16:24
  SPEAKER_01: So you went to these really, really difficult discussions.
• 16:28
  SPEAKER_00: I and I have chills right now because I do remember going to these uh appointments.
• 16:32
  SPEAKER_00: We were gonna see the the medical oncologist and surgical oncologists that at this point there was no need to see a radio radiation oncologist.
• 16:40
  SPEAKER_00: We'd gone done that, and we're done.
• 16:42
  SPEAKER_00: So, you know, the medical oncologists discuss really, it was really at this point two two possible two possible paths, right?
• 16:52
  SPEAKER_00: We had your regular chemotherapy, which we chose not to do from the get-go because knew it was, you know, for for what we were dealing with, probably wasn't gonna be effective.
• 17:05
  SPEAKER_00: The the literature and not to get medical here, but wasn't great for aggressive squamous cell carcinoma.
• 17:10
  SPEAKER_00: And I knew that as a dermatologist.
• 17:12
  SPEAKER_00: So we had we had gone over that the first time.
• 17:15
  SPEAKER_00: So now we have we have that option of, okay, do we start chemotherapy?
• 17:20
  SPEAKER_00: And that chemotherapy, what's that gonna do to mom?
• 17:22
  SPEAKER_00: What's her life?
• 17:24
  SPEAKER_00: Yeah, what is her life gonna look like if she starts chemo?
• 17:28
  SPEAKER_00: I mean, the immunotherapy, it's a little different.
• 17:30
  SPEAKER_00: It you you can actually have a life, right?
• 17:33
  SPEAKER_00: With some of most of this immunotherapy, it's not as harsh as chemotherapy.
• 17:37
  SPEAKER_00: For sure.
• 17:37
  SPEAKER_00: But chemotherapy is really harsh on your body.
• 17:40
  SPEAKER_00: So what's her life gonna look like?
• 17:42
  SPEAKER_00: Is this just are we just prolonging um right?
• 17:44
  SPEAKER_01: So talking about quality of life now, right, Mary, because I think that's important too when you have a loved one that's going through this, is what's their quality of life gonna be?
• 17:54
  SPEAKER_01: Right.
• 17:54
  SPEAKER_00: So and and again, there's no there was no for no one was really sure what to do with this case.
• 17:59
  SPEAKER_01: I don't think our physician, our physician team knew either, really.
• 18:03
  SPEAKER_00: And in the questions, you know, is she gonna respond?
• 18:05
  SPEAKER_00: Don't know.
• 18:06
  SPEAKER_00: What's the prognosis?
• 18:08
  SPEAKER_00: Don't know.
• 18:09
  SPEAKER_00: What how well if she responds to the chemo?
• 18:11
  SPEAKER_00: What's how long will she respond?
• 18:14
  SPEAKER_00: Don't know.
• 18:14
  SPEAKER_00: How many years?
• 18:16
  SPEAKER_00: Don't know.
• 18:17
  SPEAKER_00: So uh those don't knows want to shove them somewhere.
• 18:22
  SPEAKER_01: Right.
• 18:22
  SPEAKER_01: And I I think the other thing that I'm not sure we've, I mean, I think we mentioned, but we haven't mentioned too often, is that her cancer was really close to the big artery that was going into the leg.
• 18:33
  SPEAKER_01: Yeah.
• 18:34
  SPEAKER_01: So that played in pretty significantly too and limited some of the options early on.
• 18:40
  SPEAKER_00: Yeah, and and you know, we had surgery wasn't an option the first time around because it was so so large that the the surgical oncologist didn't think we could do surgery.
• 18:50
  SPEAKER_00: But that the the cancer had shrunk, so the second option was let's do surgery.
• 18:56
  SPEAKER_00: Maybe we can remove it and and we can get rid of this one once and for all.
• 19:01
  SPEAKER_00: So, and it was a long appointment.
• 19:03
  SPEAKER_00: I remember I think we were sitting around waiting for the appointment, and there was a lot of information.
• 19:07
  SPEAKER_00: And obviously, this is gonna be a major life decision here, right?
• 19:11
  SPEAKER_00: So it came down to okay, are we gonna do chemo and give her what quality of life and for how long?
• 19:19
  SPEAKER_00: Don't know.
• 19:19
  SPEAKER_00: Or are we gonna do surgery?
• 19:21
  SPEAKER_00: She freaking hated surgery.
• 19:24
  SPEAKER_00: The one her one wish after the last surgery, having the drain, having this, was I never want surgery again.
• 19:32
  SPEAKER_00: So how the F do you convince somebody that maybe surgery is their their only option?
• 19:38
  SPEAKER_00: How do you do that surgery?
• 19:40
  SPEAKER_00: Right, right.
• 19:40
  SPEAKER_01: So I think, you know, I think that was the really the problem here was that there were, I wouldn't even say there were a lot of decisions.
• 19:48
  SPEAKER_01: No.
• 19:49
  SPEAKER_01: You know, it wasn't like there were a lot of decisions.
• 19:51
  SPEAKER_01: There was really at this point, I think only two, right?
• 19:55
  SPEAKER_01: Do you do surgery or do you not do surgery?
• 19:58
  SPEAKER_01: Which, again, in some respects, having fewer options can be easier.
• 20:03
  SPEAKER_01: Right.
• 20:04
  SPEAKER_01: But this was a really difficult decision.
• 20:06
  SPEAKER_01: You know, and I remember, you know, that just that sinking feeling, right?
• 20:12
  SPEAKER_01: She doesn't want surgery.
• 20:14
  SPEAKER_00: But are we gonna put her through chemo?
• 20:16
  SPEAKER_00: Are we gonna do something that's not gonna work?
• 20:19
  SPEAKER_00: And maybe, you know, we're don't, you know, don't want to see my mom like that.
• 20:24
  SPEAKER_00: You know, what the chemo is gonna do to her, and and you know, potentially, you know, watch her deteriorate and and you know, hospice and all those questions, right, start to come into your to your head, and they're not good good things that come into your head.
• 20:41
  SPEAKER_00: So it's it's kind of scary.
• 20:43
  SPEAKER_00: But you know, again, the team gave us and we trusted the team at this point.
• 20:47
  SPEAKER_00: So there was no going for, and we were on a time, a time, a quite quick timeline.
• 20:52
  SPEAKER_00: She had a PET scan showing it hadn't gone anywhere else, I think, at this point.
• 20:55
  SPEAKER_00: So we were on a quick, quick timeline here trying to get this done.
• 20:59
  SPEAKER_00: So we had two options.
• 21:01
  SPEAKER_00: And AI walked, so we we met that day with the both surgeons and a surgical oncologist agreed maybe maybe surgery would be the a good option at this point.
• 21:11
  SPEAKER_00: And so that's what we had to to decide.
• 21:15
  SPEAKER_00: And I I remember walking out of that appointment, and it was a long appointment.
• 21:21
  SPEAKER_00: Uh, the doctors had done their best answering the questions, but there really wasn't prognosis.
• 21:26
  SPEAKER_00: What would the surgery look like?
• 21:27
  SPEAKER_00: You know, what would be the recovery?
• 21:30
  SPEAKER_00: There really wasn't a lot of answers to the we knew it would be a large surgery, it's a bad area.
• 21:37
  SPEAKER_00: Couldn't give us and would have to have more appointments to really go over more in depth.
• 21:42
  SPEAKER_00: So we were just walking out of there.
• 21:43
  SPEAKER_00: What's the what do you want to do?
• 21:45
  SPEAKER_00: Is is a question out of this appointment.
• 21:47
  SPEAKER_00: So I remember walking out and just taking a seat.
• 21:50
  SPEAKER_00: Uh, I think there was a bench there and sat down with my mom and dad.
• 21:55
  SPEAKER_00: And you know, our first question was you know, do you want something to drink?
• 21:59
  SPEAKER_00: Do you
• 22:00
  SPEAKER_01: want something to eat because it had been a really appointments are long and yeah long appointment a lot of inform yeah a lot of information just waiting and you know just thinking things are totally different now just really completely different and you know then my next question is mom did you understand dad do you have any questions right those are and just looking looking at them and and seeing my dad kind of depleted I think at this point you know really looking into his eyes knowing that yeah he's he's thinking the same thing I am and my mom you know I don't I think she's tired yeah she was tired at this point tired and not sure she completely understood everything didn't you know she hated these appointments hated hated doing it and didn't always fully listen no didn't always listen and you know didn't always have the questions you know so it was again mom do you understand dad do you have any questions and then kind of saying and I don't really even fully remember but you know you know kind of trying to do my best as a as a daughter looking at my parents saying you know whatever happens you know you're in this moment right now no matter what the future holds you have now and you have to live your your life with whatever is going to happen you have each other you still have moments together mom's still here mom's still with it dad you're you're you have your life you know enjoy those moments that you still have in whatever comes next right Susan I mean Mary I think when I hear you telling this story again I was there not there in person but you were talking to me afterwards but I think to myself how did you have that poise in that moment to have the that conversation with them right it's such a difficult you've got so many emotions going on yourself but to actually really step back and say you know guys you you you are here right now and I I really have a lot of respect for you being able to do that with them because I truly think it was probably very helpful to hear but I don't know how you did it and how you were that calm in that moment.
• 24:17
  SPEAKER_00: Yeah you know I was I think just trying to hold it together and really trying to support them and really also just you know feeling like the just feeling love for my parents and knowing that yeah we none of us can predict right none of us can predict how much time we have but you know you two love each other.
• 24:39
  SPEAKER_00: I can't you know we can just pick the best decision here and just enjoy whatever moments your moments look like together.
• 24:47
  SPEAKER_00: And if there's something that you'd like to do let's do it.
• 24:50
  SPEAKER_01: Well we have the time even though we're going to be planning and doing this not sure how I did it honestly you know I think I I've always been kind of fairly calm in the moment right I think it's a a trait that we learn as physicians too is to kind of talk our own emotions away because that doesn't necessarily help the patient.
• 25:11
  SPEAKER_01: I mean there are times where where yes you might cry with a patient you might hold their hand like have that empathy but it doesn't help to get emotional.
• 25:20
  SPEAKER_01: So I always find like in an emergency I'm always struck by how calm I am in an emergency.
• 25:26
  SPEAKER_01: Yeah but I I I think it's that piece that fortunately we've had and I'm thinking to myself like as you're talking about this they had such a beautiful relationship.
• 25:36
  SPEAKER_01: The one thing I think about is dad was they were always holding hands.
• 25:41
  SPEAKER_01: Oh yeah and you know I can see them sitting there as you're you're you're talking about this with them holding hands and that's the that's what sticks with me but it also is what like pulls at my heartstrings and makes this even more difficult when I go back and I look at some of the pictures around this time they're holding hands in the pictures but I do think that's a beautiful thing and want that for everyone.
• 26:08
  SPEAKER_00: You know yeah he they were holding hands my dad was you know always right there next to her not always agreeing you know no they didn't always agree there was sometimes some yelling on both sides but I mean that's that's a relationship but it's a reality even when you love each other.
• 26:25
  SPEAKER_00: But the beauty, you know, they had 50 some years together and you know so just sitting there with them and you know I was yeah my heart was somewhere else at that point in time.
• 26:37
  SPEAKER_00: But I think you're right Susan as physicians we try and be strong and not let our emotions kind of play.
• 26:43
  SPEAKER_00: So I think I had some practice there.
• 26:45
  SPEAKER_00: All I probably wanted to do at that point in time was just cry and you know but that's where we were and just remember very clearly just sitting there right next to them people walking by wasn't paying attention it was just us dad and me and just trying to give them a little urge to just enjoy whatever this looks like from here on out because no one can predict it right and I think that's you make a good point though Mary you know you can be strong and you can be devastated at the same time because you're functioning it doesn't mean you're unaffected.
• 27:22
  SPEAKER_01: It doesn't mean that you're not empathetic.
• 27:24
  SPEAKER_01: So I I think that's really an important point and that caregivers you know often kind of because they're caregiving and they need to caregive it put their tuck their emotions away till later you know hopefully they do process it.
• 27:38
  SPEAKER_01: But in the moment they're holding it together even though inside we've got that anticipatory grief like this is really going to be yeah not good.
• 27:46
  SPEAKER_01: But um I remember you actually calling me after that appointment and talk about that a little bit.
• 27:53
  SPEAKER_00: Yeah so you know again and I I don't think at that point in time we're the I think everyone knew what the decision was going to be.
• 28:00
  SPEAKER_00: But anyways remember walking out of the the center that day you know putting my day I always helped my mom get into the car, buckle her seatbelt, you know, and drive safe she never could figure out the seatbelt even when she was okay.
• 28:16
  SPEAKER_00: This had nothing to do with no no no making sure she had something to drink getting her settled you know and but then walking to my car from my parents' car, because I was never parked the parking lot was always full so I could never park park next to them and I I always uh drove because we came from two different directions.
• 28:33
  SPEAKER_00: So walking to my car and just you know the heaviness of just I I don't even can't just the steps to my car getting into my car kind of numb and knew the the first thing I was going to do as soon as I got to a spot where I could comfortably you know dial dial my sister I was going to pick up the phone but just getting to my car was the thoughts the the numbness and I did I picked up the phone as soon as I got on the road and who did I call I called I called Susan and you know I don't know if it was whether it was to de debrief or it was more for me you know I don't a combination.
• 29:17
  SPEAKER_01: Yeah my recollection is you know this was really one of those more emotional phone calls where I mean we both knew that we were going to have very limited choices I think going into the appointment.
• 29:29
  SPEAKER_01: So I think part of it was here are our choices and I think the rest of it was this is really horrible and really sad and I'm really scared.
• 29:40
  SPEAKER_01: Yeah scared I think as it could you know I'm really fearful and you know those are all really normal appoint feelings and then I think to myself you know among those is okay we're we're still I mean this is one of the things we did was okay we've processed a little bit now what do we do next right so I think that conversation was one of the most gut-wrenching conversations I think that we've had in all this and you know just hearing your emotions and knowing how impacted you were at the time I think I don't I'm not even sure you were driving.
• 30:16
  SPEAKER_01: I think you might have actually pulled over at one point to talk to me but that this is that anticipatory grief that we don't always talk about.
• 30:24
  SPEAKER_01: And it's it looms when you're a caregiver.
• 30:28
  SPEAKER_00: It just kind of looms there like you know is today might be a good day but then tomorrow's a bad day and we we and it's that in and of itself is exhausting as well I I feel like absolutely yeah yeah and and it's you know those and those again I know we've talked about that but knowing that I had somebody to call on the way home it was really important for for my health and for my well being I don't know how how well it was for Susan I think it was it was important.
• 30:58
  SPEAKER_01: I mean again I feel like it was important I think part of it is when you're in the dark too you become more fearful right so sometimes knowledge is power.
• 31:06
  SPEAKER_01: Yeah so even though we don't want to hear all these things it does give us some relief that we know what's going on even though we might not have all the answers.
• 31:15
  SPEAKER_01: So I think there was some of that and again like I said I I don't think I expected you to come out of that appointment with oh we've got great news I I I don't think it was going to be that and I think I knew it was going to be a lot of really difficult decisions and that we were going to be heading going to be heading into a very challenging time.
• 31:37
  SPEAKER_01: So I think that's really where I was you know when I was listening to you what I was thinking.
• 31:43
  SPEAKER_00: And then of course that part about okay now we had all that information how are we going to manage all these other things that are in that sandwich generation which is you know you're heading into the latter part of the school year right you know you're gonna have this we're we're working we just took a we just took a vacation we just took a vacation we just took time off right back and now we haven't made the decision yet but if surgery that means we've got multiple maybe multiple appointments but and then pre-op pre-op appointments pre-op blood work you know and then the surgery itself yeah I think the the ride home was was a long one and just knowing that I would be you know trying to step right back again into my life with my my work and my kids and trying to kind of segregate and it was going to be a lot and wasn't something I think I think we had to t discuss what was what we were going to do here.
• 32:39
  SPEAKER_00: Mom was not for surgery so this was going to be a decision that we had to draw together and discuss and see what was going to be best.
• 32:49
  SPEAKER_01: Right, right and I think you know that was another challenge too is that mom was not for surgery but she was also she deferred to dad a lot.
• 32:59
  SPEAKER_01: So she would be like well I'm not for surgery but if you think surgery is which made it more difficult for us but so now we were going to have to choose and convince either one or both and make sure everybody was in talk to our siblings.
• 33:15
  SPEAKER_00: We still have two other siblings make sure everything everyone was in agreement before moving ahead.
• 33:21
  SPEAKER_01: Right.
• 33:21
  SPEAKER_01: So thanks for listening to the shit sandwich generation if today's episode made you laugh which I don't think it did no probably not cry which maybe it did or just feel more seen which I hope it did share it with someone who's in this with you subscribe leave us a review let us know your own sandwich generation stories at IG handle at Marybeth P6 until next time remember that you are not alone you're doing better than you think and you really don't have to eat this sandwich