Stages

In this episode Becca and Joe reflect on the emotional stages of their cancer ordeal and the dual role of patient and caregiver as they prepare to head to Rochester for Joe's last chemo.  Hope you enjoy it!

For our Caring Bridge Site:

The Leach Family CaringBridge

We'd love to hear from you!  Email comments/suggestions at:

thecancercouplepod@gmail.com

Transcript

SPEAKER_01 0:01

Before we get started, I need to just add a quick disclaimer. I am not a currently practicing oncologist. The purpose of this podcast is for entertainment purposes only. Nothing should be taken as medical advice. Please talk to your own providers for care for your own health issues. Alright, with that out of the way, on with the show. Hi everyone. Welcome back to another episode of the Cancer Couple Podcast. I'm Joe.

SPEAKER_03 0:38

And I'm Becca.

SPEAKER_01 0:39

And so I thought we'd start out. Well, well, first of all, let's see, it is July 12th. We are going to be heading down to the Mecca in Rochester in a few hours. Because I have my last round of chemotherapy tomorrow. So that's pretty exciting. So we're coming to you from our very posh recording studio, which is actually the ping pong table in our basement. We spared no expense. So Becca, why don't you just give everyone an update on just where things stand for you medically?

SPEAKER_03 1:10

For me, right now, kind of in the maintenance phase, I started on my aromatase inhibitor, which uh gets rid of any other estrogen being produced in my body besides my monthly shots that shut down the ovary estrogen production. So I started that and also a cancer, a targeted therapy that prevents some of the cancer cells from dividing and growing, and which is ribocyclib, or also called Kisqually. So I started both of those June 17th, and so far I feel pretty good on both. I haven't noticed a lot of side effects. Um, so that's been good. Um I also have my first um Zometa infusion, which was an IV I had to do to help strengthen my bones and prevent bone metastases. So I'll do two of those a year for two years, I think. And I'll be on the one of the meds, the aromatase inhibitor called anastrazole for five to ten years and the ribocyclib, I think, for two to three. Three years. Three years. If I yeah, if I don't have too low of like if it doesn't affect my liver or what you know, yeah, it can be some things they have to monitor with labs to make sure it's okay to be on.

SPEAKER_01 2:25

As long as you don't have bad side effects, yeah.

SPEAKER_03 2:26

Yeah. So, and then I'm still doing some physical therapy. I got a new sleeve is ready for me for my baby lymphedema, which is a more customized sleeve just to target my elbow and wrist that have a little bit more fluid. Um, and trying to think, uh, other than that, I've got, yeah, lab work to do uh coming up next week. And that'll just kind of continue for a while, I think, monitoring and refills and yeah. Yeah.

SPEAKER_01 2:57

It's kind of been a lot more appointments than you thought would be at the same time.

SPEAKER_03 3:00

Yeah, I thought I would kind of be done, or not done, but uh I thought it would be just like, okay, now I'm just gonna take some pills and get on with life. But it's it's been a lot more than that between PT and um checking in with the lymphedema doctor and uh the lab work and scheduling pill delivery with the specialty pharmacy, and so yeah, it's our schedule can be a little tricky to get all of our things in between the two of us still.

SPEAKER_01 3:30

It's funny, as an oncologist, I always thought that I was sort of the main person involved, and it turns out you're the least the person I see the least.

SPEAKER_00 3:40

It's been kind of eye-opening, actually.

SPEAKER_04 3:43

Yeah, I can see Dr. Murphy the least of the people that I'm working with right now.

SPEAKER_01 3:49

Um yeah, and in terms of of uh where I stand, so as I said, uh yeah, um last chemotherapy starting tomorrow.

SPEAKER_04 3:56

So very excited.

SPEAKER_01 3:58

Super excited for that. Uh so I'll be in the hospital for, I'm hoping just overnight this time. Um tried to negotiate getting out a little bit early last time and uh that didn't work out.

SPEAKER_03 4:08

Um we're hoping you do because I have to see the oncologist at ABBA on Wednesday at 11:30. So you might be left in mail for a day if that's if you don't get out.

SPEAKER_01 4:17

I might be Ubering from Rochester if I don't get out as we hope. Uh and then um so then after that I have a bone marrow biopsy and a PET scan August 10th, I think, and I follow up on the 11th, and then we'll find out kind of what I'll be doing for maintenance therapy after that. The one the one really good news that we got was um after my third round of chemotherapy, they did a blood test called um MRD, which is minimal residual disease. So basically, you know, when I was diagnosed, it actually was discovered because the pathologist could actually see the cancer cells circulating in my blood. I think like five to ten percent of my lymphocytes were actually uh lymphoma cells. And so this blood test can measure one in a million approximately uh cancer cells. And so if that is negative, that's a really good sign. I mean, it means that you've really gotten rid of all measurable cancer. And mine actually came back negative after just the first three rounds of chemotherapy, which was honestly, I didn't even know they were drawing the test.

SPEAKER_03 5:19

That's kind of surprising. It was funny because a study nurse said, Well, I'm assuming you've seen your your MRD number and we're like, uh, we didn't know that was taken.

SPEAKER_04 5:27

And she's like real casually, like, oh, it's it's uh, you know, it's really good. It's like, oh, it would have been nice to know that.

SPEAKER_01 5:34

I know, right? Yeah. So that was that was a pleasant surprise that I wasn't expecting. Um, so so that's important because we know that in mantle cell lymphoma, that's the best predictor for uh prognosis. And so that uh is a really good sign that just basically tells us the treatment's really working. So hopefully we'll get confirmatory results on the blomerobopsy and PET scan in August. But yeah, we were super excited, you know, to get that news. That's something that they'll monitor on this study periodically. I gotta clarify, I think every three months, but I'm not totally sure I'll have to clarify that. So, anyways, that's kind of what we're up to. We're kind of hanging in there. Um, so Becky, you want to just talk talk about what we were thinking about talking about on this episode?

SPEAKER_03 6:17

Yeah, so this uh episode, um, we're gonna talk a little bit about stages that we've gone through, and not like cancer stage one or anything like that, but emotional stages of being a cancer patient. And I had dinner on Friday night with a couple of my very good uh Luther College social work friends, and and they gave me some good ideas for some things to talk about, and one of them um was maybe talking about the stages we've gone through, similar to like the Kubler Ross stages of grief, but instead um they're different like emotional states that we've kind of observed that we've gone through and also cycle through, not always linear, much like grief states are not linear. You keep circling back or get waves of different parts at different times. And also I noticed that some of the things that I had gone through earlier, because I got my diagnosis like October 31st, and then Joe wasn't till mid-February. I could kind of see him going through some similar things that I had felt earlier on in my diagnosis. So it was kind of interesting to see some similarities. So we're gonna talk about the stages that we've been through and um just kind of what that felt like and when they happened.

unknown 7:34

Yep.

SPEAKER_01 7:34

Sometimes all right.

SPEAKER_03 7:36

So the first stage, of course, is when you get that initial diagnosis, when you get a phone call that you have an abnormal biopsy or an abnormal mammogram, um, when Joe's blood work came back, kind of flagged as something was off, and then when you actually hear you've got breast cancer or you've got lymphoma, and then they confirm it's mantle cell, you have a whole bunch of kind of emotions, and I think your brain goes into protective mode, it's kind of a shock to the system. So your brain kind of absorbs whatever it can, but uh, I think it's just sort of survival mode for a bit. Um, so I think some shock, disbelief, uh kind of your you know, stomach, heart, your heart sinks into your stomach a little bit. Like, what does this mean? How bad is it? Um, and what does this mean for everything I thought was going to be happening in the next year for me? Um so how about you, Joe? What do you want to speak to what you felt? Yeah, that's I think that's pretty accurate.

SPEAKER_01 8:37

The the the heart singing in the stomach thing is exactly what I felt. I remember um the first clue that obviously something was wrong was the blood test when they I mean the pathologist said they could see cancer cells in my blood. I just remember just that pit in your stomach, like, oh, that's not good.

SPEAKER_00 8:54

Yeah.

SPEAKER_01 8:54

Um, and then uh and then you you just kind of get on with it. But yeah, initially it just like, what on earth? It's just completely out of the blue.

SPEAKER_03 9:02

So yeah, it is a visceral physical reaction, I think. And I remember um waiting to hear um after they were gonna call me to let me know what the biopsy had said, and just sitting in my car and getting the call, and then writing down on a scrap piece of paper from my purse, okay, I have invasive ductal carcinoma, it's this, this, this. And um, and I just remember kind of like okay, just trying to be very logical about it and kind of knew it was going to be cancer, so I wasn't totally surprised, but I just remember kind of my whole body stealing itself to just sort of absorb the information. And then I got the call that afternoon when I was at lunch with my mom from the nurse navigator, and she answered a ton of questions and was super reassuring. That was so helpful, but again, it was kind of a I can't believe I have breast cancer, like it just is sort of surreal.

SPEAKER_01 9:59

Yeah, yeah, yeah. Wait, when did it hit you the hardest? Was it like the mammogram or the ultrasound or the biopsy? It's kind of like a rolling thing, right?

SPEAKER_03 10:08

Yeah. Um, I think when I had the biopsy and the pathologist came in, and she just was I could tell from her demeanor that she was pretty sure it was cancer. And so I think just reading her body language in the way I mean she didn't say anything wrong. It was just I could tell she was like, I'm quite concerned. And so I kind of knew at that point, yeah, this is I'm sure this is gonna be some kind of cancer. Um so that was hard, but I think the hardest, I think I said this before in the podcast, the hardest day was the lymph node involvement because I just felt really blindsided by the pathology of everything. I think that was that was the harder, scarier time in getting the diagnosis.

SPEAKER_01 10:56

Yeah, I'd agree for me too.

SPEAKER_03 10:58

So how about for you? What was the hardest emotional part versus like before you flipped into logic mode?

SPEAKER_01 11:07

Um, yeah, I mean, really the only part that was really hard was just that first oh my god, they see cancer cells in my blood. Like, what the hell? Uh yeah, that was that was really hard. And then um, I mean the rest of it, then it was just kind of a matter of like what kind is it gonna be, you know. Um it was hard, it was hard when I found out it was Mannel cell. That's kind of what I was hoping it wouldn't be, although I knew that's probably a good chance that's what it would be. That was hard too, but but yeah, the rest of it, like the bone marrow, the PET scan. I mean, I don't know, none of those were a surprise once we kind of knew what it was.

SPEAKER_03 11:42

So yeah, I think probably that first that day that you got your blood work back and and they thought suspected lymphoma, but you didn't realize it right away that that was yeah, pretty shocking.

SPEAKER_01 11:58

Not on my radar at all.

SPEAKER_03 12:00

No, you thought it was just routine blood check that your H. pylori had resolved, and they just had to make sure you weren't expecting this huge diagnosis to come out of it.

SPEAKER_01 12:09

Yep, yep. So then, so then after you know, you go through that first diagnosis in shock, and then it's like just this whole just gauntlet of tests that you have to run there. I mean, it they come so fast and furious you can't really even wrap your brain around it too much. Yeah. But then um, you know, then the next thing is like, how do I what do I tell people? Who do I tell people? Like, how how did that go? I mean, you went first, how did that go for you?

SPEAKER_03 12:34

Yeah, well, um, obviously I told you, my parents, um, some of my close friends, but we didn't, I wanted to be careful not to tell too wide of a circle until we told the kids because I didn't want them to feel like they were the last to know. So you and I kind of tried to figure out when's the right time to tell them, and we ended up telling them, you know, we thought should we do it in person? If they're home on a weekend, should we call them? What would be less scary? But then we thought, okay, it's just too hard to keep this to ourselves for too long. So we decided to call them on a uh group zoom. And they we don't usually do a group zoom very often with the four of us because Jaden was in River Falls, Wisconsin. Abby was in Madison, they're both at college, and uh we got on. I could tell they were a little confused, like, why are we doing a group Zoom? And so I said right away, first of all, the dog is still alive because our dog is rolled and they're always worried the dog's gonna die. Like the dog is okay, and they were relieved.

SPEAKER_01 13:33

That would have been much more upsetting than our cancer dogmas, I think.

SPEAKER_03 13:36

So, and then Joe said, Oh, and your mom and I are not getting a divorce, and then they're like, Okay, okay. So then maybe the third blow wasn't as bad to hear they found a a small amount of breast cancer in mom at her mammogram. So um yeah, and I think, you know, and I think Abby shared that chief, she looks back and she goes, I feel bad. I was like making a sandwich in the kitchen and eating while I was talking to you, but I just felt so kind of shocked by it. I just didn't even, it didn't register what you're telling me. Um so we told them, and uh I think we had told your, I know I told my mom at lunch because um you had gotten confirmation on a Friday afternoon you were at work, and you texted me and said, Yes, they've confirmed it's mantle cell. I was out to lunch with my mom and she saw my face when I looked at a text, and so I told her what was going on. And so then that night we went over to tell your mom. And we were just talking about this. Joe doesn't have much memory of that event of telling his mom, which I think again is the brain right in protection.

SPEAKER_01 14:42

I don't even remember telling the kids. I had to text Abby, our daughter, last night, and like, did I call you or how did I tell you that I had lymphoma? Because I don't even remember telling her.

SPEAKER_03 14:53

Yeah.

SPEAKER_01 14:54

Or Jaden. I must have called him too, right?

SPEAKER_03 14:56

Yeah, I think so. Yeah, yeah.

SPEAKER_01 14:58

Um, but yeah, yeah. So yeah, do you want to talk about like your mom? My well, yeah. My mom is um she's had a difficult life, and so she has some survivor, I think, uh coping skills. Coping skills that she's developed, right? That that can be interesting sometimes. Um but well, and I think we mentioned before, you know, my mom also was diagnosed with stage four lung cancer uh gosh, about a year ago now, I guess. A year ago, August, I think. Um and so when when Becca actually was after Becca's diagnosed with her breast cancer, you want to talk about that?

SPEAKER_03 15:35

I was over at my mother-in-law's, they live now, we moved them down closer to us so we could help her with her cancer, but actually they've helped us way more with our cancer stuff. Um, but we were over at their house and we were talking a little bit about my breast cancer, and I think my mother-in-law got real uncomfortable because she was also going through the cancer reoccurrence, and she said, We're not gonna talk about cancer, we're just not gonna talk about it. And I said, Well, that's okay. You don't have to talk about yours, but I may need to talk about mine sometimes. Nope, we're not gonna talk about it.

SPEAKER_01 16:08

Because if you pretend it isn't a thing, then it's gonna be fine, of course.

SPEAKER_03 16:11

And me being a social worker is like, I can't not talk about it. So uh so I said to her, Well, what if we didn't call it cancer? What if we came up with a different C word and that way we could talk about it, but maybe it doesn't feel so scary? Like, what if we just call it the cranberries? And I think my mother-in-law found that very amusing, and so now we can talk about it, but we have to refer to it as we all have the cranberries, and somehow that's less threatening. So that worked out.

SPEAKER_01 16:41

Never loving cranberries the same.

SPEAKER_03 16:42

So I think you I think, if I remember right, we went to tell your mom, you said, Mom, I've got something to tell you, come sit down. And then I think you said, you know how you guys have the cranberries, you know, I do too, or something. So I think you maybe use that as a yeah way to tell her.

SPEAKER_01 16:58

Yeah, yeah. So it's interesting, yeah. And and maybe you're right, maybe it is kind of uh protective thing, but yeah, I just I don't really remember those, and those would have been pretty important live events, I guess.

SPEAKER_02 17:09

But yeah.

SPEAKER_01 17:10

Anyway, so um, yeah, so initially we told like very close family. Um and then and then how was it for you? Because I think we approached it a little bit differently, but how was it for you then telling other people?

SPEAKER_03 17:23

Once the kids knew, yeah, I told a little wider circle of friends, but I also didn't have I didn't feel like I was ready to share it like real widely. Like I didn't mind if people told other people, but um, it wasn't until I felt like I had to kind of cocoon a little bit and figure out how I felt about it before I could, you know, really make it a big, you know, public thing. So it wasn't until January I looked back that I finally posted my carrying bridge. So it was, you know, at least two months before I actually felt like comfortable on Facebook to a wider network of people to let them know.

SPEAKER_01 17:58

Yeah, and the carrying bridge we really set up, and we love getting text messages, but you know, you were having lots of procedures, and I felt like I was getting bombarded by text messages every time we had an appointment from everyone individually wanting to know like what the results were, and like, all right, this is too much.

SPEAKER_03 18:16

It's it's hard to keep up and you don't want to ignore people, but sometimes you know, you just don't have the the energy to respond or the time. Battery reserve. Right, right. So yeah, so the currying bridge has been really helpful. And then when Joe got diagnosed, we decided, well, we might as well combine this.

SPEAKER_01 18:35

Yeah, yeah, for me it was um a little bit different because you know, I I was still in practice and I had to literally just one day I'm done. And so um, so obviously people are gonna wonder, like, where'd he go? And so I wanted it out at least for sure to my coworkers um that I hadn't just like just quit all of a sudden, you know, that I was out for medical stuff. And yeah, and so um, so I didn't like blast out an email or anything, but I, you know, told people please feel free to let people know. And and and then I let a couple of colleagues know, um, not who I don't individually work with, and of course I reached out, you know, to some of my oncology friends, like, uh, hey, who would you suggest I see for this? Um, and then uh yeah, then added added being able to add to your caring bridge really helped a lot.

SPEAKER_03 19:34

Yeah, because I think you didn't feel like you had the desired bandwidth to tell a lot of people because you were like, can you just put it on your Facebook? Like you didn't put it on your Facebook. So um, I think it felt more comfortable for you to just kind of get added to our my caring bridge.

SPEAKER_01 19:52

Yeah, yeah, and then and then I completely ripped the band-aid off. This is kind of kind of funny. Um, so not too long ago, I I worked in the insurance industry as a chief medical officer for this company called Prime Therapeutics, and I left there about two years ago to come back to full-time practice. And so I had just a ton of followers on LinkedIn, and um, and I was getting, you know, like pharma reaches out to me all the time to talk about their new drugs, that kind of thing, and I was just had everyone odd ignore, and so I finally decided to just put it on LinkedIn so that all of those people kind of knew what was going on because it was starting to leak out to some of the prime therapeutics folks, and so yeah, so I just instead of putting it on Facebook, kind of silly, I put it on LinkedIn just because I'd rather I thought it was helpful for those people to know. Whereas I still, you know, um, it's funny, like I didn't necessarily want like all my old high school friends and stuff to know, although they did recently find out through my LinkedIn post, and so that's actually been really nice.

SPEAKER_03 20:53

I've that was a highlight, like one of your friends that used to play Dungeons and Dragons with, that like made your day when he sent you a message. I mean, I really think even though you felt kind of private for a while about it, I think when you have had people reach out, it actually has really you know helped your spirits.

SPEAKER_01 21:10

Yeah, and and an uh old really good um high school friend who haven't seen in god probably what 20 years almost actually came up and visited me in the hospital uh last time I was in. So yeah, so it's been um yeah, it's kind of exhausting like repeating the story over and over again, which is kind of why we're doing this kind of stuff. Um, but it is just like the support you get is so cool, you know?

SPEAKER_03 21:31

It is, yeah, yep. Yeah, for sure.

SPEAKER_01 21:35

So, so so you know, there's the initial diagnosis, and then there's sort of like, oh my god, how do I tell people? Um, and then like what was the next what was the next phase for you?

SPEAKER_03 21:44

Then I I think you're right, there's so much um information gathering, whether it's biopsies or surgery planning or pre op or whatever it's gonna be. Um, for me anyway, it just felt like, okay, what's the next thing I have to do? Head down, what's the next thing I have to do? Just go to the next thing. And you just kind of like don't process a lot, maybe while you're just kind of in that doing mode. And for you, it was probably a little different because you didn't have like surgery and stuff. But we had the information gather. You probably looked up a lot of research about mantle cell, what the latest was. Um, yeah, so for a long time I felt like I was just go, go, go, and it was maybe a little easier to keep up uh my spirits because it was you're doing something and it's busy, and you don't have time to stop and process for very long because there's always the next thing that you're doing, and you feel like you're doing something active towards getting rid of the cancer.

SPEAKER_01 22:39

Yeah, yeah, yeah. And then um the the other thing that that happens is sort of this outpouring of support once the the news gets out. You know, it's funny. Um, especially on our caring bridge site, you know. Well, let's just be honest, this whole situation's kind of ridiculous, I think.

SPEAKER_04 22:59

You know, it's a nice way to put it.

SPEAKER_00 23:02

I mean, honestly, we've sort of laughed at it a lot of times because it's just it is so ridiculous. It sounds like a bad movie.

SPEAKER_03 23:08

Um I feel like we have munchhousens. We're looking right, we're just looking for attention.

SPEAKER_00 23:13

Surely they're faking us, right?

SPEAKER_03 23:15

Thanks for all the gift cards, everybody. Yeah, that's right.

SPEAKER_01 23:19

But but but um, you know, so there's just this massive outpouring of support, and um, you know, and and so I don't know, we try to incorporate some of the ridiculousness and sort of the humor in our carry bridge side. So, you know, like a lot of people are it's like, oh my god, you people are so positive, and you know, it's funny you can find the humor in all this. But like when the whole thing starts, I mean, you do sort of you kind of gear up, you know, you're sort of like, let's get like I remember, like you think, oh my god, I'm dreading chemotherapy. Like, oh my god, can we start this like tomorrow? Yeah, you kind of want to get going as soon as possible. And so, so initially there's like this ton of let's get the ball rolling energy to get treatment started. Um, and and then just like pretty amazing, at least for us, amount of outpouring of support, like you know, like the meal train that my friend started.

SPEAKER_03 24:12

Yeah, we had an incredible, like my friend Annette organized a meal train because she's a teacher and she's super organized. I love her for that because I'm not, and uh yeah, we had it was just and what was nice about that, besides having fantastic meals given to us, is then people would come and visit for a short bit to see us, and that was that was really neat because it was people that maybe you haven't seen for a while or taken time to visit, and it was just a nice kind of like a boost, you know, to your spirit to have that time with people and and that they made the effort to come over and help. And um, so that was really I felt very supported, very loved during the yeah, when that was all happening.

SPEAKER_01 24:54

Yeah, and I and I I got like some crazy, you know, nice gifts. The my uh my team at Alina sent this just really over-the-top uh sort of care package with all of these things to you know help get you through chemotherapy and gift cards and it was so generous, yeah. And um, I don't know, like 20 people signed a card. Yeah. And then um, and then I think as word kind of got out, I got uh lots of thank you cards from from my patients, which was really touching. Um a couple of my patients sent this was super cool. It's like um it was this sort of uh floral arrangement in these little vases.

SPEAKER_03 25:34

It was like a wooden box that had an inscription on it about being a physician, I think, right? And then it had little painted white mason jars with fresh flowers. It was just it was beautiful. Yeah, and uh in a personalized coffee mug, and so um and someone paint one of your patients painted a beautiful picture for you. And yeah.

SPEAKER_01 25:53

Yeah, so it was that was all you know, super touching. Because one of the hard one of the things that's kind of sank for me is you know, usually when you wrap up a career, you know, as an oncologist, and whether my career's wrapped up or not, I don't know for sure, but you know, I usually expect to be able to say goodbye to everybody and have, I don't know, a party, a dinner cake or something, you know.

SPEAKER_00 26:12

So mine was very anticlimactic. I just like, well, I guess that's it.

SPEAKER_03 26:18

So yeah, it's not the way you envisioned. You wanted to have some closure, some, you know, if you were gonna go out, then you'd like to have time to say goodbye to patients and yeah, have some ritual around it. And it really ended with a Tuesday when you were exhausted because your spleen was squishing your stomach and you felt really sick, and I had to drive you to clinic because I knew you could barely make it through clinic, let alone drive downtown, and that was your last day. Just sort of like so unceremonious. Right.

SPEAKER_01 26:47

Yeah, yeah. So so those things were really um, I mean, super touching, especially, you know, makes me I don't know, makes me realize that I did do some good in my in my life, you know what I mean?

SPEAKER_00 27:03

Yeah, um, done a lot of good.

SPEAKER_01 27:05

Yeah. So, so yeah, so there's this initial phase of uh, I don't know, almost an adrenaline adrenaline surge, you're getting all cured up, you're gonna get after this cancer stuff, you know, for you the surgeries for need chemotherapy.

SPEAKER_03 27:18

Um and kind of like going dovetailing with what you're talking about, where you get this, where you got feedback and letters from patients, and it kind of helped you reflect on what your work has been and what it's meant to people over the years. Um I think maybe that's sort of a like a hidden stage is maybe it's because we're in our 50s, so maybe you go through this at this age anyway, developmentally, but hopefully, I think it's supposed to happen more in your 70s when we feel like we're in our 70s right now. Uh, but I think looking back at what what you've done, what you've accomplished, what your life has meant, who you've touched, you know, like feeling good about what where you've come from, what you've done so far. And I think it because cancer kind of makes you think about your mortality right in your face more, I think you start thinking about those things earlier in life than you would otherwise. And so for you, it was probably all the feedback from your patients and the texts, phone calls, gifts. And for me, I remember watching, we have a bunch of DVDs that we had, you know, taken from video cameras a long time ago, and the kids were growing up. And I was watching some of those, and for me, that because I've been a stay-at-home parent for a long time, and um it just made me feel gratitude, like, oh, we did a lot of things together. Those, you know, I did had a lot of experiences with kids and play group friends, and you know, I feel proud of the work I've done raising our kids and being connected to other friend communities through that. And it it sort of like it make forces you to kind of take a look back and what have you accomplished and to feel good about that. And hopefully you have many decades left yet, but you just you don't know when you hear the word cancer.

SPEAKER_01 29:04

Right, yeah. Yeah, that that was really fun, kind of dredging those things up. And it we even broke out our old uh engagement video.

SPEAKER_03 29:13

We usually watch that every year on our anniversary.

SPEAKER_00 29:16

Oh, too funny.

SPEAKER_03 29:17

Yep.

SPEAKER_01 29:18

So, um, yeah, so so there's this sort of like, I don't know, this adrenaline surge, optimistic, you know, uh kind of really busy kind of energy at the beginning. Yeah. Um and uh, and then this sort of like, I'm gonna, you know, we talked about all the things we're gonna do when we're done. Like we're gonna, we're gonna travel, we're gonna go to Hawaii, we're gonna go to Europe.

SPEAKER_03 29:43

Yeah, I'm like, we gotta do all the early retirement things that we thought we were gonna do in 10 years, but we gotta do them now because we don't know, you know, what's gonna happen for either of us at all this like carpe diem. Right. And then that fades. And then we're talking about now we're in July and we're just exhausted. Yeah. Like packing a bag sounds like a lot of work.

SPEAKER_01 30:04

Yeah, so um, yeah, so so pretty quickly you get you just get real tired, you know. I mean, both physically tired, but but you know, you're recovering from a surgery and you're going through chemotherapy, and then just kind of emotionally exhausted, you know. And so, you know, we went through what we call the hermit phase where um we just didn't really want to go anywhere. You know, we'd have friends who would invite us out for dinner and those kinds of things, and and we would just look at each other and like, I can't do it.

SPEAKER_03 30:33

Partly it was part of it was, and this is I want to say to any friends that asked us and we couldn't go or or declined at the time, we so appreciate the invitation. We always appreciate the invitation, and it was just like we we fell into the like we have low emotional reserves or low physical reserves, and just everything took more effort, and especially with you with your chemo, because your fatigue is so unpredictable. Most days you're really tired, take a lot of naps after chemo. Occasionally you'll have a few like part of a week where you are suddenly like high as a kite, like let's go to Costco, let's go to lunch, you know, and then that lasts for a day, and then the next day you're like, I gotta lay down again. So you can't really plan too far ahead because you don't know what your energy is gonna be like. Yeah, and also just to acknowledge, we are in this weird position of both being cancer patients and both being caregivers to a spouse with cancer. Yeah, so we're kind of giving energy on both ends all the time, and we kind of flop. Like fortunately, you know, my sepsis didn't happen while you were getting chemo. But it, you know, whatever reserves are left is, you know, like, well, what does the other person need today? Right, yeah.

SPEAKER_01 31:46

Yeah, that's true. Because yeah, there's some days, yeah. I'll occasionally have this manic phase where I'm like, oh my god, I think I'm all better. I think it's great.

SPEAKER_00 31:55

And then the next day, like, oh crap. Slot cancer right.

SPEAKER_04 32:00

This happens every time, every every cycle.

SPEAKER_00 32:04

Yeah, just have a have a good day. I'm like, I think this is it.

SPEAKER_04 32:07

I think I'm recovered.

SPEAKER_01 32:08

Oh good God. So, um, yeah, so so uh yeah, so I would say, you know, we kind of went through that permit phase where we just didn't have the either the the physical or emotional bandwidth to do a lot of things except for just kind of huddled down in the house. It feels sort of like we're in COVID again. It does some ways.

SPEAKER_04 32:29

It really does. Yeah.

SPEAKER_01 32:31

Yeah. And and then uh, you know, I but I would say for the most part, we still maintain sort of the believe the this optimistic positive outlook. And then, but there have been times that was challenged too, especially, you know, that sepsis episode was really hard, both physically and and I think psychologically on you.

SPEAKER_03 32:53

Yeah, and logistically, right, logistically too. And we'll get into that, but yeah, I one of the things that was we're gonna talk about too just is like the stages of grief. Grief comes and goes in and out different times, and and I call it it was kind of my Eeyore phase right after sepsis at the end of March because I think I've been going, going, going and plowing through, and I'd already had three surgeries, and I had all my fills every week and my expanders, and I'd been doing my physical therapy and had my sleeve, and I was doing I was doing all the right things, and even after I had my double mastectomy, I followed, you know, to a T the instructions, and I this sounds gross, but I did not shower for three weeks because they told me don't get in the shower, so you don't risk risk infection. I had hospital wipes in my defense that were, you know, wash your hair. Yeah, Joe would wash my hair in the sink, and I had these hospital wipes I could do like sponge baths, but what and it was winter, so I wasn't sweating. But um, but then I got right at the end when I was supposed to be done with all that, I got this bad sepsis that they couldn't figure out. And I I just I there's something in me broke that weekend because it was like I've done everything right, I followed all the instructions, and I'm still having this like not totally usual thing happen to me. And I just felt so sick. I I was I just was really sick, and it just I was like depleted any energy I had left for this ride. And um, yeah, and I just remember saying to my mom, Well, if I die of sepsis, that would just figure. After I went through all these surgeries, I did all these things, and now I'm gonna die of sepsis. So I just, yeah, it was a low point, and that's we decided to have my surgery.

SPEAKER_00 34:45

Oh, better living through pharmacology.

SPEAKER_01 34:48

Yeah, you were you were pretty, I would say, both angry and sort of had lost trust in the medical system a little bit after that.

SPEAKER_03 34:58

Yeah, yeah. That's that's one of the griefs I have is like I've no can I've had no control, as most cancer patients probably feel. It's not unique, you know, experience, but you lose so much control over this. Isn't how I thought I was gonna spend my fall and winter. I thought I'd be able to go in my new hot tub, but I can't do that. And you know, I didn't think I'd have to worry about my arms swallowing up, but now I do, or I didn't think I'd have to decide whether to hack off both my breasts, but I did. And so losing all those different pieces, and then also I've had so many, as we've talked about before, like um unexpected result things happen that were not positive things that yeah, you just kind of like I can't win, you know, or you can't trust that that whatever they're telling me is actually gonna be happening. So that I think just the cumulative effect of all that over those months probably just you know hit me. And also when I read about sepsis, it did say it takes a long time for your body to recover from a sepsis infection, and I think that's really true because I was so tired for several weeks afterwards. Yeah, and um, yeah, so I think you know, and when you're tired and you're really run down, your emotional reserves are not great at that point anyway. Right. And then it was probably everything that came before kind of just you know hit me then.

SPEAKER_01 36:17

Yeah, yeah, yeah. And and I think you also don't trust when doctors tell you, well, that's pretty unlikely to happen.

SPEAKER_03 36:25

Oh, yeah. Then whenever they say that, I'm like, great, now I'm getting it. Because they said it. Don't say it, knock on wood. I've turned into Han Solo and I want to say every time, never tell me the odds.

SPEAKER_01 36:38

Oh yeah, yeah, yeah. But but it I think you have pulled out of that. At least um you're not quite as angry at the world if you were there for a while.

SPEAKER_04 36:48

Yeah, so for anybody who's like, how do you stay so positive? Just say, talk to Joe. You see the other side.

unknown 36:54

Yeah.

SPEAKER_01 36:55

Oh gosh, yeah. Well, and then um, so we we have lots of things to be thankful for. Honestly, you know, we both have odds here, but you know, we both have good biology. The odds are in your favor that, you know, your cancer won't come back. Um my treatment appears to be working really well, so you know, uh it won't be gone forever, but I'm optimistic it'll stay gone for a long time. But there are losses, you know, and I'd say for you more so than me so far, because I somehow haven't even lost my hair yet.

SPEAKER_04 37:29

Um that's the one thing I kind of wanted to lose.

SPEAKER_01 37:31

I've been wanting to shave my head forever.

SPEAKER_04 37:33

Just figures, you don't even lose a hair on your head, and I lose both breasts and my estrogen production.

SPEAKER_01 37:41

Unfair, but um, but yeah, but you you've really, I think, had to go through a a lot of losses through this. I mean, do you you want to talk about that a little bit?

SPEAKER_03 37:51

Yeah, and also I was just gonna say too, earlier when you're talking about the gratitude part, earlier on I felt like it was it was um I noticed I was really like heightened and feeling really grateful a lot, which felt funny in the beginning. Like this is a horrible diagnosis, you know, it's horrible to have to deal with this, but I had this weird, like there's so many blessings or gratitude coming from this that I was really aware of. And it was like just not taking for granted the small things, you know, or like just being grateful that Joe was able to be home and be with me through this process, or you know, all the friends we have, and and I'd say, like, especially after his diagnosis, like, well, if we don't do a big trip, it's okay as long as we're just like together, you know, if we're together and doing stuff at home, I'm grateful for that because I hate to think about you not being with me here, like if this cancer goes wrong for you. So I was really like in tune to like appreciating it. It was very like crystal clear to appreciate the small moments, but I think that's sometimes hard to sustain for the long haul because you're always aware of the fragility of life, and you you can't live like that forever. I guess that's you know, it's kind of hard, but and and because the grief comes and goes, and when the grief is there, it kind of clouds that, I think. Um, yeah, and so the grief of like identity loss, your body being, you know, not looking the way that it used to, um, grieving that I have to live alongside uh a cancer diagnosis that could come back. Hopefully it won't, but um, and I tried to think about there's other things in life that I've had to go through that are hard that I s that have to carry with me, but I can still live. They just live beside me as part of life and trying to keep that in perspective. Um, and the fact like Joe keeps reminding me, I had a low oncotype score, and I have a slow growing cancer, so that's like really important and really a positive in my corner, even though I've had a lot of um like detours along the way. So yeah, and also like yeah, um just didn't I don't know, didn't think like that this was gonna be once the kids are off in college that my whole full-time job would be dealing with cancer for both of us. But I'm also super grateful the kids are the age they are, and I can't imagine for families going through this with little kids. That's just so grateful our kids are independent and can manage and you know are of course still need us to some degree, but but they're in a much different place than an elementary school kiddo would be. Yep, yeah, yeah.

SPEAKER_01 40:34

Yeah, and and I think so I have not had to have any body parts left off. Uh and not yet, I guess, right? Um, yeah, and so you know, I've uh, you know, chemo's no fun, but it's a temporary kind of a thing. And so um I guess for me it's just I'm just not sure what the future holds in terms of like how I'm gonna feel. So when I'm done with the chemotherapy, um I will have to do a maintenance treatment. So I have to take uh one cancer pill for sure, maybe a second one, which is part of the clinical trial that I'm on, and then uh an immunotherapy infusion. Um, and I think I'll feel pretty good during that, but I don't know for sure um, you know, how I'll feel. And so yeah, the fatigue has been been really hard because um like exercise when I'm under stress or those kinds of things, exercise has always been something that is helpful for me, and I I just can't do it right now.

SPEAKER_03 41:32

Yeah, you feel so much better when you exercise, like you really respond to those endorphins. Your mood is so greatly improved when you exercise compared to some people.

SPEAKER_01 41:40

Yeah, so yeah, like I'm like a slow mile walk is about all I could do right now because you know the the chemo makes me tired. I'm pretty anemic right now, you know. So I needed a platelet transfusion again this last round, and my red blood count got uh pretty low. Um so so I have been, you know, I'm I'm like a planner, so I've been sort of researching all of the things that I plan to do when I'm done with the chemo to try to get my body back in shape and hopefully not have gone through all this and have a heart attack or that kind of stuff. Um, and I I guess I don't know, you know, we'll see if when and if I'm able to do all of those things, and how long it'll take to recover from this. So, yeah, so there's still, you know, just so much kind of unknown uncertainty about like what was life gonna look like, and then sort of the grappling with like what does my life look like now? You know, like um my identity of being a doctor, which has been sort of the core of my identity for so long, is uh at least for now that's done. I I don't again, I don't know um if that's something I'll return to or not, but if I don't, then what does life look like, you know? Yeah. So yeah, so it's um we're in the grind now, I like to say, you know. Yeah, the the sort of initial burst of energy is gone. I I think I would say we're both. I still am super optimistic about things.

SPEAKER_03 43:07

You're a very optimistic person. I'm more of the cautiously pessimistic. Yeah.

SPEAKER_01 43:13

But yeah, no, I'm still super optimistic and I still look forward to us being able to do some of the things that we have been able to do lately that we'll be able to do once we're on the other side of like whatever this phase is, you know, it's not gonna be like done-done, but at least over just sort of like the intensive stuff. But um, but yeah, we're still not quite sure what that's gonna look like.

SPEAKER_03 43:36

Right. We don't know like your schedule yet for maintenance, like when we have to be at Mayo. So it's a little hard to plan right like uh trips or things like that, or something to look forward to, because we have to kind of wait till we know what our schedule will look like for this the clinical trial.

SPEAKER_01 43:51

Yeah, but but you know, um I mean one of the things I feel very fortunate about is that there is essentially An end in sight, you know. Like I think about some of my patients who are living with advanced cancer. You know, at least I get to be done with chemo. Yeah. You know, some people don't, you know. I mean, that's something that they have to live with ongoing for as long as it's working. And you know, um, I'm very thankful that we're not in that situation, and hopefully we know never will be. But so, yeah, so I mean, overall, I think the gratitude that we had when we started this, I still feel that. I mean, I I think we have so many things in our favor. Um, you know, we've had some yucky stuff we've had to deal with, but we've been here for each other, so yeah, you know, uh it's easy.

SPEAKER_03 44:42

Like I sometimes get trapped in sort of that is it myopic view, you know, like I kind of get, you know, just all I can see is what's in front of me going on for me. You have the um advantage of you've seen so many cancer patients who have a lot of difficult situations, and you know, so I think you are able to keep it in perspective in an optimistic way much better, which is good. It helps me like it helps remind me, hey, this is we've got this going for us, and this is happening, and you know, and so that's good. You've you're definitely the uplifter, um, I think about those things. And I think I've gotten a little bit into a protective shell, like, I don't know, we'll see. Because I'm just like kind of like trying to protect myself from unexpected surprises again, but uh hopefully over time that will get better. I think it's just because we're not that far out from those things, but yeah, you've you've you've been doing well.

SPEAKER_01 45:38

And honestly, this is also just our personalities, and yeah, and my optimism has sometimes led to uh misadventures in our relationship.

SPEAKER_04 45:48

A bit misguided, correct?

SPEAKER_00 45:50

Like a duplex I bought once. I thought was a great idea. Boy, was that a bad idea?

SPEAKER_03 45:54

Um anytime he has some idea that I'm not on board with, I'll say one word, duplex. We're not doing it.

SPEAKER_00 46:00

Yeah.

SPEAKER_01 46:01

So, but um, but we balance each other well, I think. So yeah, so um I think we're doing well, you know. Uh I'm super excited to be done with this last chemo because chemo does suck. Uh, and I'm I'll be glad to be done with it. But um, but yeah, I think I think uh there is light at the end of the tunnel. Um it'll be a little different landscape than we thought it initially would have been before this whole cancer thing, but I think it's still gonna be pretty good.

SPEAKER_03 46:29

So I also appreciate that you that you do keep that optimism because you haven't felt good for months because of the chemo, and that can be really taxing to feel like I'm never gonna feel good again. You know, it's really hard to not get mired in that.

SPEAKER_00 46:44

But every now and then I feel awesome.

SPEAKER_03 46:48

But also, I'm like, I feel a little guilty because your prognosis with mantle cells is much scarier than my breast cancer. Um, you know, and so uh, you know, I feel like that's a that's a burden you carry a little bit too, right? I mean, you're hoping for remission for a long time, but it's not quite as good of odds, probably, as my breast cancer percentages. I don't know.

SPEAKER_01 47:17

Yeah, I would say, you know, mine's mine's not curable, um, but livable, you know, and so I plan to live well for a long time. Yeah. And uh so I think with your ear wife. Oh boy. Just wait till you get new boobs, it'll be so much better then.

SPEAKER_04 47:38

New lease on life. Right.

SPEAKER_01 47:41

But yeah, but anyways, we're yeah, we're junket. So um, so I think uh let's call it a wrap. Uh, we got a pack.

SPEAKER_03 47:49

Yeah, yeah. And uh and also, yeah, I think this helps to reflect back like there are so many of you who are either listening or reading the Carrying Bridge or just text us, and I appreciate every single one of those, even if we don't have the energy to go out that day or you know, do the activity you asked me to do, but it's just it's an act of love that you're reaching out, and like there's one particular um, it's a friend of my sister-in-law who I talked to when I was making the mastectomy decision, and we've never met in person, and she texts me regularly, and I just um it moves me so much that she takes the time out of her life to do that, and um, and I hope when I have more energy coming out of this that I am more like that to people too. Yep, yeah.

SPEAKER_01 48:37

I will say people are awesome in general, in spite of how the world feels.

SPEAKER_03 48:42

Yeah.

SPEAKER_01 48:43

All right, everyone. Well, I'll be probably editing this from my hospital bed in Rochester. So hopefully that works.

SPEAKER_03 48:50

Yep, and this time Abby's coming. She's driving over from Addison to hang out with us. And your cousin's coming again.

SPEAKER_01 48:57

So uh hopefully this is the last time I'll be uh guest overnight at the Mayo Clinic.

unknown 49:04

Okay, anyways.

SPEAKER_01 49:05

All right, everyone. We'll uh we'll talk to you soon.

SPEAKER_03 49:08

Thanks. Bye.

SPEAKER_01 49:08

Bye bye.