Episode 12 Bosom Buddies

This is Dr. Patient, a podcast that examines all the aspects of the patient provider relationship. I'm your host, Heather Johnston, MD, a real life doctor and patient. Today's episode is a recording I took in April of 2023. But a year ago, I wanted to record a conversation between friends about having awful cancer, because most of you, I hope, will never have to be privy to a conversation like this. But I think it will be helpful for you to hear it. Probably most of you know someone that's going through a tough health situation. And maybe this will give you some perspective into living with serious illness. If you're a doctor listening to this, I'm so glad. This is a rare behind the scenes peek into the conversations your patients are having amongst themselves and with their friends. The recording is of me and two of my close friends, Laura and Melissa. We all had breast cancer within a couple of years of each other, which is statistically scary. Our conversation is kind of meandering and unfocused, because that's real life. Also, don't judge when my friend says something about having cancer and I actually laugh out loud. People who have had cancer are allowed to laugh at it whenever they feel like it. I'm releasing the whole conversation in its unedited form. It's long and includes some audio glitches and a fair amount of swearing. And it includes the really tough and hard to hear parts of our talk, because it's raw and real. And I want you to hear it that way. These are my bosom buddies. I hated it, that I could not get a hold of every doctor that I wanted whenever I wanted to. I fucking hated that. That made me so mad that I had a serious disease and I didn't feel well and I was at home and I would call and I could not get a hold of people. It drove me nuts. Oh my god. Did that happen to you guys?

Yes, it's so frustrating because alright, so I'm a doctor. And you know, obviously with that I I appreciate comes privilege of having direct access to a lot of my team, but I would try to be the patient and I would try to go the regular paths. I'd be like, no wonder patients don't get the care they need. No wonder everyone is so frustrated. Because you wait on hold for an hour, someone says they're gonna call you back by the end of the day, you don't get the call back by the end of the day. And like, in your mind, or even in my mind, I'm like, Okay, I know that this one day is not gonna be life or death from this thing. But like when you're going through a cancer diagnosis, every single question feels like life or death. So to have to wait, even for that time to get an answer was so frustrating. And again, I had privilege, like I did have the ability if something really was irking me to reach out to my team directly, but tried not to abuse that. But yeah, super, super frustrating the way that healthcare is managed nowadays, just to like, push 1 if... push 2 if... Insanity.

I think one thing you said that was really true. Like when you're, you know, when you have your average day to day health problems, you realize that things can wait a little bit, and maybe it'll take a day or two for somebody to get back to you. But I think when you're dealing with something really serious and sort of scary, or you're really not feeling well, it's like you lose that cushion of patience. Like the patient should not have to be patient. You know what I mean? I don't want to wait a day to find out if I can be on a different medication because I'm feeling sick. I don't want to wait a day, which just doesn't seem fair. It's already so shitty what you're going through. It's like, that doesn't seem right to have to wait extra.

Yeah.

That happened to you, Laura?

So mine was so it's totally complete opposite, I think, because I was in such denial that I had been had breast cancer that I was kind of pretending it wasn't not. I don't know, I was pretending I just didn't let it sink in. Plus, I had you guys, right? So you know, if I had a question, I would call you or text you, whatever. And I would get an answer. And even if you would say I don't know, or it's different for every person, it didn't matter. I'm like I glommed on to whatever you said. Um, my whole thing about...

Oh God, I'm like what did I say?

Right? I'm like was the advice good?

It was always great advice, it was always really good, I'm sorry. It was more of I think the thing that upset me most not was not was not that I had cancer. Well, the thing that that I had breast cancer and that I had, you know, these things, I had a choice of a mastectomy or not. And this and that. It was more that I was on this track of, okay, so I'm 50 well I was 59 at the time about to be fifty, no I was 58. And I was thinking okay, so I'm going to enter my 60s and enter you know, old age or whatever you want to call it and be healthy. Right? So trying to get my weight and be not overweight, exercise and hope this whole plan eating well giving you know, and then I get breast cancer. I'm like, What the fuck is that? So it kind of threw me off this path that I was going to age well, because I want to see grandchildren. I don't want to be a burden because my mom was so unhealthy. But so that's why I think I was consumed by that. That I wasn't going to age without disease. Do you know what I mean? I think something always gets gets you in a way. But I was so mad about that I couldn't even see the breast cancer. Yeah. Like, are you upset? Like, my friends were more upset than I was.

So it pushed you off your rail of your plan?

Yeah, so.

Yeah that's really true.

Yeah. And Heather, you were the first of us, though.

Yay, I win.

After right? You're the one who got then give, give the advice to me and then to Laura. And then. But then it was just sort of crazy. Because after you and then myself and Laura, and then one of my daughter's other best friend's moms was diagnosed, it was like this epidemic of breast cancer and these young otherwise healthy women. But like, I remember calling you after my diagnosis, first of all sobbing and you being there for me. But the first thing that I had to say after sobbing was I'm so sorry I was not there for you. How disappointed were you in your friends? Because until someone has gone through it, I don't think they really understand. And if I could do anything again, it would be to go back and support you differently. But did you just feel like you were this island? Because you were the first one going through it?

That's a great question. Um, you know, there's all sorts of ways that people can support you. And for the record, both of you called me. That's number one. Just reaching out. I mean, if I'm looking back now, I would actually say I lost a couple of friends. Because they just never called once and I knew that they knew about it. If they hadn't known about it, of course, that would be very understandable. But for people to hear about it, I know that they were told about it, and then never make a phone call? Just a phone call or a note or an email, or text or anything. That to me was going too far. So neither of you did that, just so you know. But no, I mean, you guys called. I don't, I didn't have any expectation that people would understand what I was going through. It's like you had two levels of friends, right? Not better friends, or worse friends, just friends who are there as friends who are supporting you and love you. And then friends who completely understand what you're feeling, and what you're going through, and they understand your emotions and that you're laying in bed at night because you're terrified. And because you don't have enough energy to walk down the street. Like, yeah, I didn't have any expectation for people to understand that. You can't, you can't. And then it also makes me think about the doctors that you see, right? This is not the first time I'm bringing this up on the podcast. But I mean, I really think a lot about how it is for doctors that care for patients with diseases that they haven't had themselves. And, you know, they see a lot of patients with it. They hear a lot of stories. But I still don't think that they can fully grasp exactly what it feels like. You just can't.

Yeah, I couldn't agree more. I always...

I don't think that it necessarily has to make a doctor better or worse, to be in that position. Like, some of my doctors are incredibly beloved to me. I, they were there for me in every sort of way. And they've never had cancer or anything like it so. And it doesn't make it better or worse. It's just different.

I agree.

Yeah, I would always say, you know, people who haven't walked this path can sympathize, but not really empathize. And I know that there's maybe it's hard to make the distinction between those two things. But you really don't know what someone's going through, including your physician team. And one of the things that I've said after this is, gosh, I hope I was one of those physicians who no one ever left my office crying, but I'm sure that that happened. I'm sure there were days that I was having a bad day as a clinician, or I just, it wasn't clicking, and we weren't relating well, and I was that doctor that made someone cry. Because that happened to me on my journey, you know, there have been physicians who have made me cry, when I. I've held it together in the room. And then as soon as I've gotten the car, I've just sort of lost it. And I do think though to speak to it that especially in oncology, I give that those doctors so much credit, I do think that they sort of have to build that wall because of what they do and the outcomes and so many of their patients that if they didn't, then I don't know how they'd go home at night. You know, they need to be able to separate work from life in some way. Otherwise, they are carrying this home with them to their families. And so, you know, while the callousness that I sometimes felt did hurt me personally as a human being going through it, I can understand why maybe it was a necessary evil for the physician so that they could do what they do every day in the oncology world.

You know, it's interesting when I was in medical school, and we had to make the decision about what to do, or excuse me take that back, when I was in residency already training as a pediatrician, I had to decide what type of Pediatrics I was going to choose. And when I first started, I really had planned on going into hematology oncology. Because as an already, then as a cancer survivor, I knew that I would really get my patients. But I actually consciously made the decision not to do it, because I also knew that I would be that kind of doctor that would never go home. I just wouldn't, I wouldn't be able to, I'd be there all day, I'd be calling my patients at night, I'd be having them over for dinner. I mean, like, I just wouldn't be able to separate myself out of it, in part, because I already had the same experience, I would know exactly how bad it was, and what what they were feeling, I wouldn't be able to disconnect, actually, to what you were saying, Melissa, that's so interesting.

What was it that the doctors did that made you feel that way? Was it just being matter of fact or just not being kind or just that left you?

Yeah, you know, and I think that it's a blessing and a curse, being a physician going through this, Laura, because we do understand so much, that the conversations I think can be a lot more direct, and you know, the medical terminology, and there's maybe not as much of sort of the softening the blow. Because it's, you know, we all know, I know the statistics, I know the odds, I know the articles. But for me, it was one specific time that I can highlight that as part of a clinical trial, because I have triple negative breast cancer, I'm the lucky one in our trio that got the most aggressive, most, you know, horrific breast cancer you can have. So I'm doing a clinical trial, because I want to feel like I'm doing something and it's a really long trial. And I said to the physician who's running the trial, okay, well, you know, obviously, one of the benefits of doing a trial is that if it shows benefit to long term survival or disease free survival, and I was in the placebo arm, that I will be one of the first people to actually get this vaccine. So, you know, when will you have that data? And she looked at me and said, well, Melissa, by the time this study is done, you'll either be dead, or you'll be fine.

Holy shit. Wow.

And I, I just, I mean, my jaw dropped. Like, I couldn't believe that that is what was coming out of someone's mouth, to a cancer patient. And like, I know the odds. Like I know that the odds of my cancer coming back within five years are high, again, because it's triple negative. But like, yeah, maybe you could have said that a different way. So that's, that's an example that I have for you that just didn't, it just didn't go so well. And again, held it together in the room, held it together for the walk out to the car. But like, as soon as I got in the car just started sobbing. I was like, I don't know if I want to do this clinical trial anymore. I don't know if I can see this person again. Like I don't like I think I have PTSD from this now. Like, and especially if I'm getting the placebo to put myself through this all the time. I like I don't know if I can do it.

Right. Yeah, that's, I mean, even what you just explained that you're both clinicians, maybe can be more direct, but that's not even direct. That's just kind of cruel. I don't know.

Have you seen her since?

Um, I have. I have, I see the nurse practitioner more often. And in fairness to her, what I will say is, I think I heard the word dead, but she may have used the word gone, you know, or it will be of no benefit to you. But it was very clear. You know, the implication was, you will have already passed from this disease. So I've seen her. Have I provided feedback? No. Do you provide feedback to your team Heather? Laura? Like, if things aren't going well do you feel like you can speak up and say like, I don't think this is going well, or I don't think that interaction went well.

I probably wouldn't, but that's just my personality. So

I have in other situations. I'm trying to remember if I did about this one that's on my mind. I mentioned it to a bunch of people. I didn't get formal about it and like write a letter and I didn't talk to the person directly. But when I was first diagnosed, I met with a medical oncologist. That's someone who deals with chemotherapy, and we were in the room and they were saying I would need four or five treatments over a few two month period. And he said you'll have to have a portacath. For everyone listening who doesn't know this, that's like an indwelling IV that gets surgically put, like there's like a little box that goes on the outside of your chest super tiny and then there's a tube inside that goes into one of your blood vessels. And they use it to put chemotherapy directly in so they don't have to put a needle in your arm. The worry is that chemotherapy can be kind of toxic to the smaller, more delicate veins in your arm. And he said, you'll have to have that. And I said, No, I'm, oh, no, I'm not having that. And he said, Well, you're gonna have to have it and I said, I'm not having that. You know, I had lymphoma, as I have already told you and had one of those for two and a half years and I'm not doing that again. And I started sobbing uncontrollably. My husband got up who was by the way, sitting like 20 feet away. Because we were in some bizarro, back corner storage room that they were using as an exam room. It was so weird. There were like old rusty wheelchairs all around me. It was the weirdest visit ever. But anyway, so my husband makes like the long trek from the other side of the storage room, and is hugging me. And the doctor just leant back on the counter and folded his arms over and just sat there looking at

Wow]. As I was sobbing, like, I mean, I guess he, in his defense, he doesn't know me, I'm not a sobber, right? But I lost my shit over that. But he never really asked me why. He never said, well, let's discuss it or, okay, I can see this is upsetting. Let's put this on pause and talk about the more important stuff or you know, none of that. And anyway, we finished up the visit and I walked out and I said I'm never seen that person again. Because I can't feel so bad about somebody emotionally who is supposed to take care of right. And then I found the manager of the office, I asked at the front desk, I said I need to figure out who is the manager here in this office. And that person came out from the back and I did explain in full what happened. And she said so sorry and she put her hand on my arm and she did and said all the right things. Probably nothing came of it. But then I said, well, I need to see someone else. And she said, Oh, you can't, it's the office policy that you can't switch doctors. [Laura: Oh!] and I said well, I'm switching doctors. So if you can't approve that, find me who can. Because after what I've told you, you can't possibly be saying that to me. And I don't know, she wanted the back and talked to somebody. And maybe they knew I was a doctor and maybe they didn't. But I just stood my ground about it. And she came out and she said, we'll let you do this this one time. And I thought okay, I'll take this win and run with it for today. Right? And if I don't like the next person, I'll deal with that battle later. But yeah, it's hard to give feedback directly.

I think one of the things that I learned through both of you during this was that I didn't have to do as much legwork, because there's that network of people that have had breast cancer in Chicago, and everyone kind of knows who all the doctors and can tell you about this person or that person. And I remember and this is not specific to breast cancer, I remember when I had both hip replacements, um like, very early on because of a genetic kind of thing. But I was just, I think a lot of patients were like this, I just settled on a doctor, not really. Maye you do a little research and it's fine. And then you have a friend who represents doctors all over the you know state or whatever and yells at you and says no, that's not the best, this is the best. So I think it takes a lot of courage to be able to say, I don't like this doctor, I'm gonna go to a different doctor. So for me, you recommended some people, I saw them both, and chose the one that best fit who I liked the most: their personality gave me information. But I think people and I think this is a common thing you probably have already done, that they just don't speak up because they think doctors are kind of godlike or authorities and you know, they know better than you know, so you don't question it. You know, so I was lucky that I had you both that I was able to question and then make a decision.

I think there's actually a few different reasons why patients do that. I mean, I think one of them is definitely related to not feeling empowered, in the exam room and in the relationship to say, I don't, I don't really like you very much, or we're not clicking. I think just people don't feel like they can do that. Or maybe they don't know

Right, right]. You can, just so you all know. But the other reason is, I think especially slightly younger crowd just doesn't care as much. I find that when I talk to some young people in their 20s and 30s. They're like eh, it doesn't matter if I like them or not. It's like they just don't seem to think it's important. I guess when you're younger and you're not having many health problems, and you're barely seeing your doctor once a year if that maybe it just really doesn't matter very much, but, I argue that it always makes orders

Right, agree.

Yeah, I do think for the younger, it doesn't matter as much. And that and also like the consistency of the team doesn't seem to matter as much. It's more about convenience. Who can see me when I want to be seen, where I want to be seen. Okay, great. I'll see that doctor this week. And if four weeks from now, it's a different one. I'll see that one. So definitely a generational shift in who are becoming patients.

Well, let's just unpack that for a minute. I mean, I think that that's happening because it's very difficult to build relationships in the current medical landscape. You just don't have time, because as many of the other episodes on this podcast have gone over, doctors days are just simply too overpacked. So, for example, they're rushing through visits, or even if they don't rush through a visit, hopefully, they'll hit your major problems that you're having, but they're not probably going to have time to talk to you about your diet, or your sex life, or your alcohol consumption, which everyone should be talking about more. I mean, there just isn't time for that. And sometimes I think that that's where the relationship is built more. Not when you're talking about what nose spray you need for your allergy, or that you need to see a dermatologist for that weird looking thing. But when you're really talking about your life, and the decisions that you make, and how you make them and what your relationships are like, that's, I think, like where the relationship stuff happens. And if you're not getting that, then you don't have a relationship, then you don't care. [Laura: Right, right.] I can't tell you how many people called me during the pandemic, and Melissa I bet this happened to you too, to ask me for advice about COVID vaccines or testing. And sometimes I would say well, did you call your doctor? And they're like, no, why? Why would I do that? [Melissa: Yes]. I don't know. Yeah, right. Yeah. Yeah, that's really hard. Did you feel like you had relationships with your doctors? That one not withstanding, Melissa, that you were just talking about? but the others like, did you have relationships? Did you trust them?

Yes. So the breast surgeon I worked with, I have a great relationship with. But my husband, who's also a surgeon, we saw her grow up in the medical field, so to speak, from residency through fellowship all the way through, I saw her as a young attending, and now, you know, a more senior attending and so complete and utter faith in her. And so while a lot of people I know with breast cancer will see a medical oncologist first and then they will refer a surgeon, mine kind of went the opposite way. So it was my surgical oncologist who I spoke with first because she's the one who got the pathology of my diagnosis. And then she's the one who made the recommendation for my medical oncologist. And so because I trusted my breast surgeons so much, there was that inherent trust, I just didn't think that she would be sending me to someone who was not clinically sound and good. And so over time, I did build that trust then with my medical oncologist as well. And I will say, though, that I, I trusted my gut when the time came for me to then explore radiation oncologists. We weren't sure if I was gonna need it or not. Some recommendations were made and I was like, no. This is not the team for me, and then sought out second and third opinions. So I do think that sometimes you can realize very early on as a patient, that that relationship and that trust probably is never going to be able to be built, whether it's a personality clash, or a knowledge deficit that you identify or whatever it is. But yes, I definitely have a really good relationship with my breast surgeon and my medical oncologist. And, you know, we've always said, you know, when I get through this in that five year mark, that we're all going to go out and have a drink together. We all have children who are, you know, exited off to college the same year that the three of us did, you know, so there was a lot of commonalities in what was going on in our lives. And so I do think that I was able to build those relationships. Wish I didn't have to. I sure it's how I wish that it wasn't me who had gone through this, but you know, did meet some pretty amazing people through the journey. I hate that word, by the way. Sorry.

I do too. I can't stand. It's somebody sent me a card. Maybe it was one of you. Somebody sent me a card that I kept on my fridge for a couple months. It says if I wanted to go on a journey, I would be in the Caribbean. And I was like, Yeah, I taped it right up front and center on my fridge.

God, like I don't know what else to use, but I frickin hate it when we talk about cancer and I experience maybe I'll start using that because yeah, it was not fun. It was frickin hell. And a journey sounds like something that you get to choose to go on.

Or you could just, you could just call it like the shit with a shit with a capital S. You know the shit? Yeah, we would all know. You brought up something that made me think is another reason to try to work on having a good relationship with your doctor is because if you need other doctors, then you'll probably find them more easily if you could just get a name from someone that you know and trust.

Exactly. You know, it's really comforting to be able to say to a doctor, when they say well do have an oncologist? And you say yes, I'm thinking of this person. And they say, their face lights up says, Oh, she's great. And then it's like, the seal of approval is so important. This is someone I knew when you know, our girls were going, we're going through school, and I remember meeting her when the kids were in JK, and she's lovely and fabulous. And I don't think I knew she was an oncologist and knew she was a cancer doc. I remember saying to her, I ever get cancer, you're my person. And then just coincidentally, she's an oncolgist, right? But you know, it great that I got to reconnect with her and what her and It was really lovely. But knowing that the surgeon, you know, her face lit up was all I needed. So it was great.

Yeah. Did you guys feel like you had any experiences with doctors that really went over the top in a great way? To help or to be there or to be supportive? Or something else I'm not thinking of?

I don't, I don't think so. But I you know, I think Heather, you and I have the same surgeon. I thought this story was funny that you know, when they come in and see you after the surgery, right and have all the residents there. And you know, the it was it just lighten the mood. I think I may have told you guys the story. But you know, they all come and look and they look down and they look and I guess the surgeon had done such a great job. They were all marveling at it. It was just very odd to have like all of them marveling at your breast and the way it's whatever and i said this really weird.

Yeah. I was gonna say, Yeah, we had the same surgeon Laura. But you know what I really appreciated about her, and I almost consider this over the top, but it isn't. I appreciated that she just did her job like it should be done.

What do you mean?

Like I went in there, and she was patient

Oh, yes, yes]. And sat down and talked about everything. Not just the breast cancer, the surgeon. But we had the long talk about alcohol and smoking and other social stuff. We talked about sex life, we talked about menopause, she took all the time that I needed, completely patiently, at this pace that I'm talking even though I know she's got like 10 patients waiting, cuz she runs really late. But I mean, she did her job exactly like she's supposed to. And I felt like that was over the top.

You know, I so I agree with that because the other

I waited an hour and a half last time I was surgeon I saw didn't give him the same kind of time as her, you know, and the one of the things you told me that just rang true every time was book the early morning appointments, even going all the way down to work and getting there at 7:30 versus noon or whatever appointments because, you're right. You said, one of the first things you said to me was be prepared to wait, and I kind of didn't take you serious? I'm like, what do you mean by that? But it could be three, but it could be four it really early? Because then there. But she's worth it. So I do it and I don't mind. It's like it makes me mad if someone's not worth it. [Laura: Right]

Yeah. I'd say that. So my plastic surgeon was also recommended by my breast surgeon. Right. So first of all, what I'm gonna say is I had an entirely female team, which rocked. I just was so proud of the fact that every single person who was caring for me was a woman going through this. And so my breast surgeon and my oncologist, Heather, to speak to you - they did their jobs, they did their jobs well. They definitely reached out beyond what was needed and I'd say that they both took just such excellent care of me, but my plastic surgeon because I the surgery I had I had a bilateral mastectomy, and then I went direct to implants in the same surgery. And so it was a 10 hour procedure. And it does have a greater risk of complications of the implants being rejected or the wounds breaking down. And one of my breasts had some ecchymosis, which is just like a little bit of bruising, and we weren't sure was it just some blood vessels? Was it some real bruising? Was it wound breakdown? And when I tell you that we were texting back and forth on weekends, I'm pretty sure she was getting married one of those weekends, and she still wanted an update to like the moment she was leaving. She just really did sort of that step beyond to make sure that everything I'd gone through that she was doing everything she could to prevent wound breakdown and to make sure that I wasn't going to have to go through another procedure. And I get it that, you know, sometimes in spite of the best care and the patient and the doctor doing everything, right, these wounds do break down, and the implants need to come out and it can happen. But I consider myself lucky that I did have this team that was just so on top of it, above the top, sort of like what you said, and everything ended up working out and I healed beautifully.

That's wonderful.

Yeah. I get the sense that when doctors do that, it's usually for other doctors, it's just part of the benefit, I think I had two different doctors tech, cell phone numbers that I could text with during that time. But when that happens, I almost feel like they enjoy it because in reality, it's so much more efficient for the doctor to talk directly to the patient. It's always the best. You know, that's ultimately the person who's making the calls and the decisions, and you are ultimately the person who's having the problem, or the challenge. And so for those two people to talk directly is really the best for everyone. We all know that it just simply can't happen in today's landscape. But I feel like I'm like I practiced before texting got so crazy. That really makes me sound old. But [Melissa: we are.] But I feel like if I was still practicing today, I mean, I would love that to just be able to text with my patients. It's just so much more efficient.

I wonder. So you two are both physicians. And I wonder and because I got this sense whether when you work with someone you enjoy, and like and respect, that makes a difference. Because when I was being examined, so you know, you they wheel you in and you're getting prepped for surgery and that sort of thing. And the plastic surgeon came in, and she looked at everything, and she was writing a note on my breast, or I'm in my you know a note. And I thought she was like, I'm I love that. just leaving, you know, I was the same surgeon, my little love letter. I was just like, what? So she left a note for for the surgeon. I just thought that was hilarious that they had a relationship and then she ended up leaving the practice. And I know that the surgery was she was pretty devastated when that happened because they were so close. And I just felt that because they liked each other there was mutual respect, and that she was leaving her a love note on my breasts was really funny. And thought that was kind of cool.

I do love that.

Great. That's really cute. I know they have to initial, you know where they're doing surgery now because there have been so many stories of opening up the wrong sides and such, taking off the wrong place. So the rule in most places now is yeah, the rule in most places now is you have to leave your initials. But I liked that she loved a note that's actually really funny and cute. Yeah, that's heartwarming. When your team is all getting together that makes you feel like I don't know, family ish and cozy and caring. Yeah. Yeah, it's really true. Ugh, man. I will say that, for me, probably one of the worst parts of my illnesses, was that it happened during the pandemic when my kids were home from school. Because I did not want them to have to look at me all day. I was going through chemotherapy at the time. And I did not have terrible GI symptoms, like I was not throwing up and whatever else a lot. But for me, I really couldn't eat. My mouth was just like, degrading on the inside. And I had so little energy that it was really hard for me to walk from the back door of my house to the front door of my house. That was really hard. So most of the time I just laid on the couch. Because I didn't want to be in bed all day either. So I laid downstairs in our family room on our couch. But my kids would come down for breaks from school like at lunch and to get snacks and I felt I felt like bad being there. I felt bad that they had to look at me. That was hard.

It's interesting because so mine was a pandemic cancer as well but different stage of the pandemic where the kids were back at school. And what was hard for me, after my kids had been through the trauma of a pandemic with two doctors who were working through it, was to then tell my children how careful they had to be when they were reentering the world because they could kill their mother. Because they had been locked in their house for so long. And Andrew and I were gone all the time because we you know had to neither one of us are in specialties that shut down during the pandemic because a lot of physicians did stay home if they could, but we couldn't. And so the world was opening back up to school and masking or whatever, but you know, they're teenagers. Our kids were teenagers and, you know, they wanted to do what their friends were doing and unmask and hang out. And that was really hard because you know, I had no immune system and so having to be the mean strict mom was really hard. But I'd say I it was I also there's an indentation on my couch that we call my chemo indentation, I don't think it will ever go away until we get a new cushio and I lost so much weight and I'm a thin person to begin with. So how I made a permanent indentation that couch, I have no idea. But I did.

Yes, that is surprising.

I, The fatigue, the bone pain from one of my chemotherapies to the moaning, like I to have my children and my mom and my husband have to listen to the moaning that was just involuntary, because I just oh, it just hurts so badly. I also was lucky that I didn't have a lot of nausea and vomiting. But you know, had lots of stuff coming out the other end. So that wasn't so fun. But yeah, it was hard. The hair loss, the hair loss was really hard for my son. Not as hard for my daughter. It was really hard for my husband. I'd say interestingly, it was the women in the house who handled it the best. And I opted not to wig, I really didn't even scarf very much because it was just more comfortable for me to be bald. Ultimately, everyone came to terms with it. But Heather, it was all hard. The mastectomy and the surgical recovery was so much easier than the chemotherapy, for me at least. And for my family. It was hard and like I tried to stay active every day, some days, I'd go to my physical therapist, and I'd actually be able to get through some sessions. Some days, I would not get off the bed and the physical therapy office and all we would do is some stretching, some days. I mean, the joke in the family was it was time to walk mom, sometimes I would make it a mile. Sometimes I would make it to the end of the block and back. So it was understanding the limitations. And I know that this answer is just so much longer than what you wanted. And you'll edit this out. But I'd say that the consistent thing that is still actually really hard, and I'm two years out from chemotherapy is that my cognitive function has not returned to my baseline. And we call it chemo brain. And it's a real thing for people who don't know, and we don't really understand why it happens in the medical world. And for some people, it doesn't happen. For some people, it does happen, but it's just this sort of fog or word finding we struggle with and I was just so highly functioning before that to still struggle sometimes finding the right word or description or something. And sometimes I'll just say to my family, just tell it to me. What did you know who was that person? And sometimes I'll say Don't say it. Don't say it. Like, I know what I'm trying to come up with, like, let me find it. But that's really hard for me. That is still really hard for me that I'm not back at my baseline yet this far out.

Yeah, I have that too. For one for me, for one thing. It's annoying and frustrating. But also it's sort

yes.] It's an annoying reminder.

Yep.] Everytime I can't think of something or my kids will make fun of me briefly. But like, I just don't remember the thing we talked about last week, or I don't even know if that happened or what's reality or not. Yeah, I just think like, fuck that. To still have something affecting me is very annoying. Yeah, it is. It keep thinking about it.

Right? Like, I just want to fucking put it in a box and pack it away. But I can't because there are those daily reminders. It's the brain fog. It's my port scar. Unlike you, I did not fight my way out of a port. So I did have one you know, it's the scar. It's the it's the everything that is a daily reminder of what I went through. And I don't know if that box will ever be able to be fully packed away. I don't know.

Did your doctors talk to you about any of that, like the brain fog, chemo brain, whatever we're gonna call it and just the longevity of you know, the reminders and feeling not yourself?

So they did it was definitely something that was mentioned and my oncologist has been a saint about this, because to the world, I am still very highly functioning, but I know I'm not at my baseline. And so she is always like Melissa, you know, the most highly functioning women who I work with are the ones who are most frustrated by this and it will get better with time or you will adjust to your new baseline but it's something I still just complain about to her every day. The longevity of the emotional scarring I'd say she didn't talk with me about as much but even at my first appointment they did make me meet with a psychologist. And not because I mean, like it's part of the team. And I poo pooed it a little bit. I was like, great, thanks. It was so nice to meet you this one time. I made it through medical school, I made it through an OP residency, I am good. I have grit, I have resilience, I don't need you. And I wouldn't say that. Yeah. And then like, I didn't, I really did not work with the therapy team through my treatment. And then afterwards, when I was when I realized I needed help. And I'm not afraid to admit it now. Like I definitely then when I was able to sit back and look at everything I had gone through and my two ICU admissions and my near death experiences. And I was like, wow, I probably do need a therapist. So no, did my oncologist talk about necessarily this long term emotional effect? I don't recall. But I know that they know it exists, because they recommended that I work with a therapist. So

it's funny that you don't recall. It's part of the problem. Who knows?

Thanks for pointing out that chemo brain!

Sorry. But also then to be like around menopause age. I can't remember where you guys are at. But I mean, now I'm fully in menopause, o I have that on top of it. I mean, I don't know what's I don't know what's what anymore. I don't, my team did not offer any kind of therapy or discuss it. I think they asked me to fill out a survey, online

a survey.] But no one ever contacted me about it. Did you get that Melissa? or No?

You mean Laura? Or me?

Yes, I meant Laura, no. chemo brain No, ignore that.

I don't remember that at all I do. One of the things, I think, you know, my whole denial thing that I talked about earlier, thinking that, you know, you have major surgery, they took your breast off, you should just kind of relax and I just am not very good at that. So after a week, you know, we dropped my friend, you know, my my best friend from home came to take care of me she was a saint. I mean, I had a, there's some there's a like a return air event that needed to be replaced and all this dust and whatever. I couldn't ever get it off to and I could have her banging there, trying to get the screw out of it, and she fixed something that I've been staring at for like 10 years, she was fabulous. But after I dropped her off at the airport to go home. I think it was with Ella, or one of my you know, the girls and I said, Let's go shopping at the premium outlet mall, which is by O'hare and I couldn't, I think I did like, I don't know, one, like a couple of steps and I was in excruciating pain. And that led to me, I couldn't move. But you, you think you're okay, and you're not. So I think that was my whole thing that no one said to me, you know, you really should relax, don't try to work, don't try to do anything. I mean, you're told not to lift your arm in that whatever that was. I think that's the thing that women like ourselves, who are doers, we are always on, you're always doing everything for everybody else, you really have to not do anything. And that was my big takeaway. And, you know, you had major surgery, don't go for a walk. You know, you think you can, but you really can't.

Well beyond thinking that you can, I mean, you want to. Because you're hanging on to every shred of normalcy that you can. Like, I want to cook dinner, and I want to walk my dog and I want to help my kids with their homework. And yeah, it's like, it's almost like another level of a blow when you have something really serious that you're going through medically. On top of the fear and the challenges of being sick and going through that, you also are losing other parts of your life, you know? [Laura: Yeah]. Yeah.

I lost something I didn't expect to so I love to read and I was like, great. I'm just gonna blow through books during this time, right? Well, no one warned me. No, like, you are not going to have the focus. You're not gonna be awake enough and alert enough. I read zero books during that entire experience, Heather, thank you for that word. During that entire experience, like I, I couldn't even do that. So like I lost something that used to bring me such joy that like, who would have thought that that's something that I would have lost. And I'm just now finally getting back to enjoying reading again. And it's been two years.[Laura: Wow.]

Yeah, yeah. I was the same way. I think I watched 7000 hours of television. Which I really don't like. I mean, I don't enjoy that much of it, but I just couldn't do anything else. That was it.[Melissa: Yep]. Yeah, they don't really talk about that stuff. Because they don't have time to. Just bring this right back full circle.

Yeah, 100%

Yeah. It's just is about two o'clock. I don't want to keep you guys from your workdays. Is there anything we didn't talk about that we should get out? Anybody have something that they wanted to tell? We covered a lot.

I would say this, I think you both helped me with this, and that is, allowing people to help you. I think that was probably my hardest part. I remember being home for a day or not even and you Heather calling me and saying I'm coming over, bye.

I remember learning that I had to do that.

No and it was great, because it was great seeing you. And it's just it's that's, that's I think the hardest part, just allowing your friends people who care about you take care of you, if you're always the one trying to take care of other people. So I think that's, that's important to let people do.

I think so too. I know that when I got diagnosed, the place that I started my care gave me this book, it was basically like a how to on how to have breast cancer, how to have breast cancer, or like breast cancer for dummies. And it's something that had been published through that medical center. But I remember I flipped through it. And it was like some helpful stuff. But in the back, there was a whole chapter on how to communicate with your family and friends about what you need. And there was a page that you could take out and photocopy or scan and send to people saying, like, these things are helpful. These things are not helpful. These questions are great to ask, please don't ask me these questions. I actually thought it was really smart.

Yeah, I agree

I mean, because it's sort of like, it's another element we didn't really talk about. But when you are sick, and I'm going to add on, especially as a mother, I'm not excluding dads, I'm just saying it's slightly different. You're just naturally in the caregiver role of everyone around you. And so what's challenging about that is, as we've already talked about today, like you can't do the things you want, and then you kind of feel bad. But the other part is, um, I lost my

chemo brain] Just give me a second, it's gonna come back in a sec. What was I gonna say? Jesus, it's my every day. Um, I was gonna say it can feel awkward, as you're saying Laura. It can just feel so awkward to have to lean on people and ask for help. And, you know, some people are good at that and some people are bad at that. But I do think if you're going through something really serious, it is really important to drop those barriers to allowing yourself to be cared for or allowing yourself to be helped and asking for it if you need it. You know, the people in your life like want to help. And you're not going to be a burden if someone just makes you dinner or takes your dog for a walk or something. A

Yeah, bsolutely.

Yeah, I'm glad you said that Thanks for listening today. To catch up on more episodes and to get new ones delivered directly to you. Subscribe wherever you find your podcasts to Apple, Google, Spotify, iHeartRadio and more. If you'd like to be a guest or have an idea for an episode, let me know at www.drpatient podcast.com That's drpatientpodcast.com. Here's the disclaimer. Even though I am a doctor, I'm not your doctor. These stories, my comments and all discussion is purely reflection about what's working in the healthcare system and what isn't. Don't use any medical information that you hear in these episodes to diagnose or treat yourself. If you have a question about your health, get in touch with your doctor or local health clinic