#58 Managing Chemo Brain as a Speech Language Pathologist

"Chemo brain," a lingering side effect for many breast cancer survivors, can become an unforeseen adversary both during and after treatment. Imagine the irony when your vocation is aiding others with cognitive challenges, yet you find yourself grappling to find the right words.

Join us in this episode as we converse with Mary Ann Eller, the linchpin for speech-language pathology at Duke Regional Hospital in Durham, North Carolina. As a breast cancer survivor, Mary Ann faces her own battles with "chemo brain." Yet, she's not just navigating her way through it; she's also spotlighted this pervasive issue in the ASHA (American Speech-Language and Hearing Association) Leader Live Journal, emphasizing its significance in the medical arena.

Discover her personal journey, the strategies she's adopted to juggle her professional commitments and personal life, and garner actionable tips to integrate into your own recovery narrative.

For a comprehensive guide to converse with your medical professional about cognitive support during breast cancer recovery, refer to the resource provided below.

Resources: 

Mary Ann's article

There's No Good Card for That from Everything Happens with Kate Bowler in Podcasts
Emily McDowell website

Read the full transcript:

0:01
This is Laura Lummer, the breast cancer recovery coach. I'm a healthy lifestyle coach, a clinical or Aveda specialist, a personal trainer, and I'm also a breast cancer survivor. In this podcast, we talk about healthy thinking and mindfulness practices, eating well, moving your body for health and longevity. And we'll also hear from other breast cancer survivors who have reengaged with life, and have incredible stories to share. This podcast is your go to resource for getting back to life after breast cancer.

0:38
Well, hello, and welcome to episode 58 of the breast cancer recovery coach. I am your host, Laura Lummer. And I'm super excited that you joined me here today and you are going to be excited because I have a great show for you. So I'm gonna get through this intro super fast, because the shows a little longer than I normally record. But it is so good, such great information and I think you're really going to connect to it. So first of all, today, when this recording comes out, it will be October 1, which is the kickoff of breast cancer awareness month. And no better way to kick off this month then with our amazing guests that I'm so happy to bring on and I'm going to tell you about her in a minute. But first I want to give a shout out to one of the podcast listeners K Speed 11, who left the super cool review on iTunes. K Speed 11 says a great resource for every breast cancer patient. This podcast is enormously helpful in navigating life after a breast cancer diagnosis. It carries additional weight in that Laura has empathy. She has been through this. In this journey, we are told what will be done to us. And we're forced to be an expert on cancer when we don't even speak the language. We put on a crazy carnival ride of treatments and doctor appointments. And we have limited control over what has been done to us through this podcast Laura, it helps us recognize some of the things that we can control. She's a soothing presence, a wonderful storyteller, and her experiences are so relatable. I'm so very thankful to her for doing this podcast. And I wish for everyone with a breast cancer diagnosis to connect with her through this podcast case be 11 Thank you so much. I wish the same thing. We're on the same page girl, I only wish I could know your name. I hate that iTunes doesn't tell me your real name. But I appreciate you writing that so much. Thank you for listening. Thank you for downloading and thank you thank you thank you for your kind words. I really appreciate that. And if you're a regular listener, and you can take a moment today to leave a review to leave some stars for the breast cancer recovery coach. That would be so amazing. Every review every time you leave some ratings it helps this show so much and makes it easier for other breast cancer survivors to find who may need to hear it just the same way you do. Alright, so let's get into this. We're going to be talking today with Mary Ann eller. Maryann is the clinical services coordinator for Speech Language Pathology at Duke Regional Hospital in Durham, North Carolina. And she is my girl she is one of the first members of my online course re vivify. And something that is so special about this show is that as Marianne was going through vivify, she kept sending me messages and emails and just telling me how she was stepping out of her comfort zone and how she was becoming more comfortable with herself and more willing to break out of boundaries and just kind of stretch those margins of her life and what she was willing to do. Now Marianne has had a lot of challenges with chemo brain after going through treatment, as so many of us do. And so this is something that's really near and dear to her heart, because the occupation that she's in the position that she holds, being sharp and being able to think quickly and give direction and lead other people as a part of her daily life. And chemo brain can have a big impact on that. So what brought us around to Marianne being on the show is that she recently achieved a landmark accomplishment, and I'm so freaking proud of her. She wrote an article, my ironic journey as an SLP speech language pathologist with chemo brain. And her article was published in Leader Live happening now in the Speech Language Hearing world. So this is a journal that's specific to her industry, and it's an amazing accomplishment. And when Maryann's

5:00
sent me an email and she linked me to this article. And she just told me how proud she was of herself and has every right to be for all the things she has overcome. And for taking these steps to advance and increase the awareness of what is happening, what happens to us after breast cancer treatment, after we go through chemotherapy and radiation and surgeries, and people think, well, you're survived, you're done, move on. And that is now where we are at in this space. And so I'm so grateful to her for taking that steps and being bold and being brave, and I could not be more proud and more honored to have her on this podcast.

5:42
Now, I have only one thing to tell you before we hear from this amazing woman. And that is that something I'm in the habit of doing when I record a podcast is bringing my dogs into the room, so that they don't start barking at some random thing they see out the window or something they hear at the door. So probably halfway through maybe a little past halfway through, you're gonna hear one of my dogs laying down on the floor by me and going having a little bit of a doggy nightmare, being asleep. So know that I don't live next to some dog kennel. And it's just my little dog, my cockapoo mo having a little doggie nightmare. So without making you wait any longer. Let's hear from marianella. Marianne, welcome to the breast cancer recovery. Coach, I'm so happy that you joined me today. Thank you. It's great to be here. Good to have you. So let's just get right into this. And we'll start off with just a little bit about you share your story with us and how we got to this point of where you're at in being an advocate and speaking out about what chemo brain actually is, and what a lot of us breast cancer survivors go through.

6:51
Well, I remember crying in my car, in the parking lot of my work, which is a hospital in Durham, North Carolina. And I was halfway through my chemotherapy and I was starting to forget things and I thought this has got it, there's got to be something out there that can help educate me and just helped me to feel not so alone. And that's what I found your original podcast from chemo brain, I think from season one. Uh huh. And I just remember it was such it was such a comfort to know that it wasn't just me, and that there were other people out there that felt like this. So that's kind of my beginning of how I found this podcast. But going back further.

7:37
I was diagnosed in May of 2017. I was 52 years old. I'm 35 years old now.

7:44
routine mammogram. And they called me back. And sure enough, I had a tiny little half centimeter tumor way in the back of my left breast that I never would have felt

7:55
until it got so big that it would have been really bad. Exactly. Not that it's not bad to begin with.

8:02
Right. And I I also remember, you know, I've worked in a speech language pathologist, which we'll talk about in a minute. I've worked in hospitals for 30 years. And I remember having the news delivered to me on the telephone that I had breast cancer and the woman who I knew the radiologist who was reading it to me read it directly from the piece of paper, she had just been handed and she said, invasive ductal carcinoma, which I knew exactly what that meant.

8:32
And I was in such shock, I remember at the end of the conversation saying, so if somebody asks me if I have breast cancer, do I answer yes or no? Wow, I just don't. It doesn't matter how much you know, when it happens to you. It's just so shocking, right? Oh, yeah. So 2017 I was diagnosed went through six treatments of chemotherapy. I had, tch b i was for two positive. So it was Taxotere, carboplatin, Herceptin and Perjeta. Did the Herceptin and Perjeta for a year had radiation because it had spread to the lymph nodes. I had a bilateral mastectomy, and then a whole year's worth of reconstruction that had two different infections and reactions to drugs. And so the whole thing went on for about two years. I think the end of it I would probably mark as this past summer, so I'm just kind of at the very end of it. Yeah. And now how do you in your purse, your profession, especially had you ever heard of chemo brain and was it considered actually a real thing?

9:43
In my profession as a speech pathologist, I had heard of it, but nobody I know in 30 years had ever seen a patient with it. I have never heard a talk on it at any of my professional organizations. I'd never really paid much attention to it. Interest and yeah, and

10:00
I only embarrassing it, did I start to research it and realize that this was an avenue that speech pathology can help with? Yeah. Which Which makes sense, because for 30 years, what I've done is I've worked with adults in a hospital, in the Duke Health System, either with strokes, head injuries, brain tumors, diseases, anything to do with the brain changes in speech or cognition. And so my whole career, which I love has been all about figuring out how people think, what's gone wrong, and how do you fix it?

10:37
And then here I am smack in the middle of it. And I'm the one that's having all the symptoms, who's whose names and labels? I knew very well. And if it was probably one of the worst two things of the entire experience, and what were some of the symptoms? And then I'll ask you, what was the second worst thing?

11:02
The symptoms were, I mean, everybody has senior moments, everybody has, you know, you forget a word now and then. But I would be in the middle of the manager of a small department for five other speech pathologist who I know very well. And I'd be in the middle of a meeting in the middle of a sentence, and I'd completely go blank. And I wouldn't remember what I was saying, I wouldn't remember

11:27
anything, but everybody's staring at me. And it was so embarrassing. Or I would be writing a note, and I couldn't think of really common words, I would make mistakes like crazy, especially if it had to do with numbers, or double schedule, things that I didn't mean to

11:46
so many things that were way beyond normal. I remember taking my lunch one day into the lounge to microwave it. And going over to the coffee machine with it

11:59
was the best microwave machine.

12:04
This isn't normal. Oh my god. So when you finally realized, well, first you realize, okay, something's not right, right. And you started to look into it and discover chemo brain. And what happened after that, like, if you figure out I have chemo brain, and you are a professional in dealing with, you know, cognitive challenges, what did you do? Did you talk to anybody about your department? And they receive that with curiosity? Or how to other people in that in that niche of medicine and therapy? Accept that or, or talk about it? Well, at first, I didn't, because it was really, really embarrassing. Okay. I think that the reason why it was one of the top difficult things is because all of the other things that had been done to me were done to my body had to do with something, it felt it was my identity. That was my inside, it was who I was not what I look like. And so it was really, really difficult. Not only because it was my brain, but because of what I did for a living. And I and I panic. I mean, I, I'm the one who who carries the insurance in the family. I have I have three kids. They're they're 2219 and 16 at the time.

13:25
So I couldn't afford to lose my job. I couldn't afford to go back in hours. I had to make this work. So I panicked. And

13:35
the fear made it all the worse. Yeah, the stress of that made it all the worse. So that's the first thing I did. And to be honest, that's the reason why I want to do this. This podcast in particular, is because I don't want people to think that they're crazy when this happens. So important. Yeah. And you know what I feel like a lot of things now in this space of breast cancer recovery, are so much like menopause when menopause was an indelicate thing to speak about, right? And sadly, there are so many women trying to struggle through this period after treatment who do think that they're alone? I hear that all the time. I didn't know this happened to other people. And then they don't talk about it. Or maybe they talk about to the wrong person first. And that person as I know happened to be so I've never heard of anything like that. So then just reinforces Oh, you're just an oddball, you know, this doesn't happen to anybody else. And it's a terrible place to be. Because it is so common and especially if you hear that from a physician, right that you turn to Yeah, yeah, it was.

14:43
It was a really, really scary time and I didn't necessarily get brushed off by my physicians. They just had a lot more pressing things to worry about.

14:53
And, and the one referral that I did eventually get to a cancer psychiatrist.

15:00
She was really, really helpful. But I know that all.

15:04
All facilities don't have that. And so I was able to get some medicine at the beginning that really helped my attention. Okay. I was able to I took Ritalin for a little while, okay. And it really did help you, you notice the difference? Yeah, I don't have ADHD.

15:21
But it really helped. Because, number one, the medicines, I couldn't stay awake, and I couldn't focus. And it just gave me some relief from that it didn't say brought me all the way back up to normal, but it gave me some relief from

15:36
just not being able to focus long enough to do anything because I was so tired. Yeah. So I don't think that's a fix for everyone. But for me for a time, it was okay, I don't take it anymore. Well, and I also want to make sure we emphasize that point of, I think a lot of times, when we're in treatment, or even just newly out of treatment, we keep looking to our physician to solve a lot of issues that we have that may be fatigue, or chemo brain or whatever emotional issues. And we forget that a doctor's role is to practice medicine to save your life, right to address this disease and get rid of this disease. So if you're struggling, someone, something that's personal and powerful to you, like, not being able to remember things and not feeling as sharp as you once felt, you're right. It's like they look at you and go, Okay, I'm trying to save your life here. Right? So you'll figure out how to remember things, write a post it note, right? Well, you're splitting while you're struggling, right? You're going this was terrible. So how did the cancer psychologist was a psychologist or cancer psychiatrist, psychiatrist? And was your cancer psychiatrist familiar with chemo brain? Or what information could they give you? Yes, she worked in the Cancer Center at Duke. And she worked with breast cancer patients brain tumor patients, she was able to tell me what were the leading offenders in the chemotherapy world for cognitive changes. And I, I definitely had a couple of those. She was extremely reassuring. And just, it made it external to me, it wasn't my fault. It was like, this is something that she sees all the time. Well, I had never heard of it. I had I didn't know.

17:24
And I think also just helping me to put into perspective that it's a hell of a lot of stress to go through this that has that has a big bearing on your cognition. The the lack of sleep has a big bearing on your cognition, right, the being thrown into menopause in the middle of it is, I mean, there's so many different things I can't pull apart, what caused what all I can do. All I all I did, as I went through it, and all I continue to do is just attack the things that I had some sort of a, an influence on. But I think that's a great point. Because referring back to the other podcast I did earlier on chemo brain. That was what some of the studies showed, right is there's so many things happening to at one time that can impact cognition, that chemo brain is a result of many things at one time. Right? So some of the obviously you can't undo the fact that they put chemotherapy drugs into your body. But what things can you do?

18:25
Well, for me, the biggest thing at this point, and I'll say, I've been dealing with this for probably about a year,

18:32
I worked full time, the entire time, I continue to work full time. And I'm really, really proud of myself for that. I'm really, really grateful to my team, because eventually after going through the shock of of having this happen, I did confide in them. And I did kind of take that step. And it was met with nothing but grace and support. And it took it took so much of the stress off of me, for me to just be able to be myself. And I know not everybody has wants to do that or has that ability. But for me, that was really, really helpful. Yeah, well, I think sometimes it does help. And it can be important to be transparent with the people around you, because they don't understand what's happening. So if you can say, this is what's happening with me, then I do think there's a little more compassion. Whereas if you don't say it, you leave people to create their own story. Right? And you leave people to go she's not paying attention anymore, or she must have been traumatized or she doesn't care anymore, or something like that. When the truth is that's not at all what's happening. Right? Exactly. Yeah, exactly. And, and it's even it's doubly hard being the boss and having that happen big because I put a lot of pressure on myself that I want to lead this amazing team. And not only just make sure everything's as it supposed

20:00
To be, but I want to have vision and I want to have creativity and I want things to go well, and not just be status quo. I mean, deservedly so I think that that's what a, a boss should do. So it's made me a man, I think, I hope they would agree with me. I think it's made me a better manager. Because I rely on them way more.

20:23
I take them to meetings with me, and I say, you know, if I, if I lose my words, jump in. Yeah. Great. Yeah. So it's more it's, it's a great team. And they have really helped a lot of very fortunate. That's awesome. And I wonder, has their perception of chemo brain changed? And is there I guess, an openness in the hospital environment, and maybe not specific to yours. But if you've heard about it, that people might say, oh, when you see a cancer patients dealing with this, now we're getting an understanding of its chemo brain, like, is there a desire to get more education in that area? Professional Education? It was me Yes, yes. This is the first time people have ever heard of it is now that I'm talking about it. And I put out, I put out an article in my professional journal about this experience. And I've gotten a lot of reaction back throughout the country of people, other speech pathologists that have had changes in their cognition because of chemotherapy for all sorts of cancers that are like, I'm so glad that you talked about this. Never would have, you know, thought about that. And so,

21:36
and I'll be posting a link to your article in the show notes, too, by going. Thank you. Yeah, of course, I have a crazy vision of somehow helping in some way. I'm not sure exactly what that's going to be, but maybe this will be part of it. Yeah, well, I think elevating that awareness, just so one us as survivors, understand we're not alone, and that there are things we can do find support with and then in your professional field, helping those other professionals realize this is a real thing. So if someone felt like they were suffering from chemo brain, what's the first step that they should take? Definitely talk to your doctor. And I know that sounds like a pat answer. But there are some things that cause cognitive changes that are reversible. So if you are really low in your blood levels, if your sugar is really high, or really low, there are so many things happening within your body during cancer treatment, that are reversible. So definitely talk to your doctor and be open about the changes that you are seeing and start to write them down. Write down what you see. So important notice, yeah, yeah. And let's talk about sleep. As a speech and language pathologist, how important is sleep for cognitive function?

22:56
Well, not only just it's extremely important, and not only just sleep, but just turning off my brain throughout the day, that's one of the you would ask me to, to break down a couple of things that are strategies that I use, and one of the biggest ones is respecting. My brains need to rest, I mean, completely rest. So not just go around Facebook and, you know, distract myself for a while, that's still using a whole lot of verbal and visual energy in my brain, but actually fit something physical, taking a walk, getting up and stretching, doing something that just completely switches the switches over from mental to physical. So that when you come back, you're more ready. That's a great tip. That's really good advice. Yeah, yeah. And, and the amount of time that I can focus on something changes from day to day based on the amount of sleep that I get. So I it's sort of like every day is a sliding scale for me. And there are a number of different factors that I have to consider that I never had to think about before I have to consider my sleep. I have to consider how intimidated I am by the person I'm talking to. I have to consider how many people are listening to me. I mean, how many are in the audience of familiar Am I with the subject because and then depending on what one of them, like, if I didn't get good sleep, then the next day, I am not going to have that meeting at four o'clock. Like the hope that I'll have that meeting at eight o'clock. Because I know I'll be my best step. So I have to be there. I'm a lot more deliberate with my planning than I ever had to do before. Yeah, and I totally just want to touch back on that. Because for me the same thing when I first wake up, I've learned to schedule the things that need the most creativity, the most focus the most detail have to happen. First thing right. And then towards the end of the day, either I'll be blankly staring at us.

25:00
Rain, or it's just this task oriented type of stuff that I can take care of. But yes, I totally have noticed that change since chemotherapy. So I think it's a good point you make that it's not necessarily Oh, whoa, I had a great day this went well, I felt really mentally energized. I'm over the hump. Because maybe the next day is something different. And so you don't beat yourself up or think, Oh, I screwed something up or something like that, if one day is the same as the next? Well, sometimes I beat myself up, you know that, but I'm trying to get you to stop.

25:38
I try not to I try to.

25:43
I try to use the skills that I know. And and it's, I've always tried to do that organization used to be optional, it is no longer optional, right position is something that I have to do in order to keep my job to keep my marriage to keep my kids. I have to do it. And for a long time, I resented that, you know, and there's still times that I resent that. It's like just one more thing cancers taken. But you know, it gets easier. It really does. Yeah, I agree. And I think that it's so important to have those routines, creating that routine, where you put your keys, and I don't know, like for me, like getting things ready at night that I'm going to need first thing in the morning. And you know, understanding, it's that concept of just really tuning into yourself and understanding how you work now, getting to know this knew you, I love how you said write things down, because I think it's important even to write down or to note, like I wear a Fitbit. And it tracks how much I slept and the quality of sleep that I got. And it's really cool to look at that and see, oh my gosh, you know, my brain felt fried today and look back and see, oh, I had a really restless night, whether I consciously realized it or not right? Or what you eat and keep track of these things and write them down and then see how on some days, you may feel better than others. And notice if there's a pattern there. That's really important. I think the other thing I would say on that is I went through a period where I was really afraid of forgetting. Like then when I when I became aware of all of this, it was a constant state of panic, like, oh my gosh, I have to write that down. What if that's important? What if I, and just to have some grace with yourself? Have an app ready on your phone to go ahead and speak into when you're driving? If there's something that comes to your mind or a piece of paper to write something on if something comes through your mind while you're doing something else? But it's okay. Yeah. And to say to your point, I say to people, they'll walk in and say something to me. And I say, you know, I'm not gonna remember that. Please write it down. I'm the poster, no queen here, pick up that post it note and write it down, hand it to me. And that way, I'll remember because I'm focused on something else right now. You tell me something else. Sorry. So are there other practices? So let's say that someone doesn't have those resources available to them at the hospital? Are there any activities that we could do ourselves? Like, do puzzles help do things like brain apps where they're challenging you? Does that help at all?

28:26
Yes, I, in the therapy world world where I work, if you went to see a speech pathologist, most of them aren't going to have any experience with chemo brain. But a lot of them will have experience with people with concussive syndrome or mild traumatic brain injury, it's the same kind of pattern. It has to do with attention and memory, and thinking and executive function. And they should be familiar with how to treat that and badly the same thing that's happening in chemo brain. Okay. I think the difference is where it's originating from. And your question earlier was, will it get better or not? It depends on what you read.

29:11
I was told mine would not get better. I do see mine getting better. Okay. I don't know if it's because I'm adapting to a more, or if it's true. I don't know. That's a good I don't think there's any. Yeah, I don't think there's enough. There's enough known to speak in any sort of final word about it. Yeah. Yeah. That's a really good point. Because yeah, Did it improve? Or did you just learn how to work around it feels better because you don't notice that as much. Yeah, that's a really good point. Yeah. So there's so there's two kinds of therapy in in our world is compensatory and restorative? Compensatory are the kinds of things that you've talked about. So you have a problem and you compensate for it. So if you can't remember you write it down. Or if you need an alarm, or any kind of the systems on your phone that you can use to organize

30:00
See your day, I was gonna say I have like 15 different alarms on my phone throughout the day to remind me whenever I'm supposed to be.

30:08
So yeah, those are all compensating for things like one of my biggest things is being distracted. So if somebody has, when I go to treat a patient in their room and their TV's on, I cannot focus if the TV is on. So I have to turn it off, which is actually a good practice for most people in the hospital anyway. But those kinds of things are compensating for my attention. So number one, all of those things, yes, you can look up any kind of organizational and memory strategies for anything, and those will help you. Number two is restorative, that's taking a problem and actually making it better. That's actually what I'm doing right now by doing this podcast. Because this is something that I'm not sure I'm going to succeed at. And yet I'm stretching my brain to be able to do it. That's neuroplasticity. Neuroplasticity is our brains amazing ability to rewire. It's like if you had a stroke, and you did not use your left arm, and you just waited for it to get better, it will not get better. The neurons that control that arm will look for something else to do and they'll do it. Okay, so whatever's happening in your brain you have even if that left arm is weak, you have to use that left arm. So even if my memory and my verbal fluency is weak, which it is, I'm doing that now. And I'm making myself do this. And I think you're kind enough to edit out the parts that I'm not doing well, you're doing great. But

31:39
I'm totally leaving that in.

31:43
Its, you know, I've written a ton of notes to be able to do this. I have thought a lot about this. I have, you know, whereas before I wouldn't have had to. So the restorative things, yes, anything that stretches your brain, you'll have to identify what is it you're with the different areas, you can have trouble in our memory, obvious, usually people aren't going to have long term memory issues, but more short term or working memory. So being able to hold on to information, not only get it into your brain, but encode it and be able to do something with it later.

32:21
Those respond really well to the compensatory, kind of the things we talked about. But don't come to rely on those only. It's like I have trouble with math. I mean, not so much before, but since. And so when I sit down to do charges in the morning, I will periodically not use the calculator in order to stretch my brain and then I'll check it with a calculator, right, but don't use the compensatory things and not use that skill. Again, anything that keeps your brain working can only help where a speech pathologist or a neuropsychologist can help you is to make it more specific to you to make it more specific to what your actual deficits are in because mine happened. My biggest ones are word finding. And multitasking, somebody else's might be something else. That's where I think talking with the professional to help you tease out exactly what you need help with will benefit you. Okay, so someone could go to their doctor and not necessarily say, hey, I need help with chemo brain. But they could say, you know, I'd like a referral to a specialist because I'm having trouble remembering things or focusing on things and, and that get that kind of a therapy so that someone doesn't just say, Yeah, chemo brains not for real. Yep. Yeah. And I think you were gonna, you were gonna link the article that has a hole that I sent you that has a lot of evidence behind it that people can take to their doctor if they want to. Because when you look at that article, it's a giant article that looks through all sorts of different evidence for interventions with chemo brain. And the one that seems to work the best is the cognitive therapy, the therapy with a speech pathologist or with a professional, not as much with the medicine not as much with the supplements, and there were some other things they looked at, but it's the cognitive therapy that makes the biggest difference. I think that's great. Okay, So recapping, we can go to our doctors to ask for referral to a specialist that helps with cognitive deficits. We can set ourselves up with different routines, so either something to compensate for what we're noticing, and then what about seeking some kind of counseling or working with a counselor or psychologist something like that? Yeah, that was something that was such an important part of the whole puzzle for me, I think because our cognition, and our memory is so wrapped up in who we are, and our identity, that the adjustment that I had to make just

35:00
With having cancer, it was just too much for me to try to do by myself. That's just ridiculous. I needed I needed somebody that was not directly affected by my cancer to bounce these ideas off of and to reassure me that all of the gigantic, histrionic things that I was thinking in my head were true. And she really helped me a lot and gave me the courage to be able to face a lot of these smaller monsters before bigger monsters. And that to me, I don't know if everybody needs that. But to me, that was really, really helpful. I needed somebody to guide me through that. Yeah, I love that. And I like to just that, when we're addressing that we're saying to, it's okay to ask for help. It's okay to create a support system, whether that someone inside the family or a friend, or whatever it is a counselor or anything like that. But it's not only okay, but I think it's so important, it's really important to be open and vulnerable with the people around you and let them know, this is the support that I need. I would say that out of the women I work with those who struggle the most are those who feel like they don't want to acknowledge the changes that may have happened to them. Because like you said, it's difficult, it's difficult to say, I feel like I used to have a great memory, I used to have all this energy, I used to take care of everything. And so they still want to, and they can end up very frustrated, because it's difficult to focus, because you may not have the same amount of energy. And then it's this horrible cycle of beating yourself up and then staying up later to try to do more, you're making yourself worse. So finally, just allowing yourself to create that support system, it's okay to make the kids do the laundry now, and then it's okay, to let people know, we're putting a cork board up by the front door so I can remember what the hell we're supposed to be doing today. And which time I'm picking you guys up, or whatever it needs and to say, you know, to reach out to a professional that can really, really support you. And I think that this is one of the most challenging things for women to do to acknowledge that they need supports,

37:11
and the non professional support there, I didn't have a ton of friends, I could tell everything to the ones that I could tell these things to were my backbone, and continue to be I mean, I I that I think that's what's so great about this, about your podcast, and just about your groups are, I don't know you I

37:34
the country, telling you all sorts of things.

37:38
But that kind of help is out there. I think there's enough people that had been through this, that want to help other people go through it. I know there's gonna be somebody listening to this in their car crying like I was, you know, yeah. And, and it kills me to be able to help other people.

37:57
I think that's the beauty of community. Absolutely. And there's something about Yeah, we may not have known each other, but we got each other, like we get it. And that can be the really hard thing is like not having somebody around you who gets it, who understands what you're really going through. And even if you have a support system of friends who haven't been through cancer, or cancer treatment, but yet they're open to understanding, right? They're not just saying, Oh, you'll be fine and dismissing it, you know, it's not something that can be dismissed, because it's very, very real. So let's talk for a minute. So you were one of my very first members and revivify, you were one of the first group to go through. If someone was thinking about re vivify, and hasn't done it yet. What would you have to say about that experience on what they might be able? Or what did you get out of that experience?

38:50
I think what I like about it is that you can make it whatever you need it to be. It can be an online community where you bare your soul or it can be something where you just look up what you need. And I think a different times.

39:08
For me, I need different things. There's some times where I'm feeling like I want to tell the world everything. There's times where I just want to be in a shell, but I want a little bit of a lifeline. I think that there's enough people in your community and with your experience that you've got all sorts of different

39:25
personalities and abilities and it's it's the only thing that I've found that focuses on after breast cancer care. There's so much about breast cancer care but there's this you're just you're just left in such chaos when it's done. You are and and it's it deserves as much if not more care afterwards because this phase is going to take a whole lot longer, a lot longer.

39:56
And so I really really love or good the fight for that reason.

40:00
Thank you, we can make it whatever we want it to be. Yeah, and I've had. So I want to speak to that for a second, because I was surprised when I designed river the fire when I started the breast cancer recovery coach podcast, I really do have someone who's finished breast cancer treatment in mind, because of the struggle I went through after treatment, right? It was my belief that when you're in treatment, first of all, there's a ton of resources available to people in treatment. And your focus is not on getting well getting strong getting back, it's on living, it's like, let me survive this shit, you know. And then it was after the fact that things didn't turn out the way the doctors told me it would you know, the after the fact that all the changes to my body and I was left going what in the world is happening. But that being said, I'm always surprised and thrilled at the number of women who reach out to me and we have women several in rebuild Fie, who are currently in treatment. And when I think about that, it's I,

41:05
I kind of, on the one hand, think, Gosh, I hope I'm not scaring the crap out of someone who's in treatment, because she's got enough on her mind. Right? And I don't want her to think you're never going to be the same again. But then on the other hand, I think I wish someone had been transparent with me, and had kind of been open with me and said, You know, it's kind of like when I don't know, people talk about having children and the like, when the head comes out. It's all over. Oh, no, that's just the beginning.

41:34
Till we have more challenges, after that you had to bring this full circle you had asked me earlier, what were the two scariest things? Oh, yeah. And I told you, the one was chemo brain. The other one was the very beginning.

41:47
It was the very first couple of months where I didn't know what was going to happen. And I had no, I had no bearings whatsoever.

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Whoever I had no framework. I have no reference. I had nobody to look to. That was horrifying. Yeah. And so I think I think I agree with you. It's, it's not too much. Yeah. And I think not only is it horrifying, but at the same time, because there's so much marketing and awareness and talk, and we're coming up on this is gonna be our first podcast for October, Breast Cancer Awareness Month. So there's just this big mindset and expectation of fight it and be a warrior. And so it can be a real challenge to be terrified. And at the same time, feel like, Oh, I've got to stand up and pretend I've got this, you know, that this is cool. I've got it, I can make this happen. And it's like, this sucks. You know, this is awful, though, and that's okay, too. I remember going to different meetings and gatherings that had to do with breast cancer, I remember being in the audience, and I remember feeling much more, much less positive than they were saying I should feel and how that was absolutely essential to healing and feeling guilty then, for not feeling positive. It just seemed to heat more guilt on me. And that wasn't their intention at all right. But it's, it's, it can be a lot on your plate at one time. And I think you have to be able to be somewhere where you can be whatever you are, and have people come alongside of you. And, and just be with you. 100% Yes. And it's like I remember being so angry. And I was like, I'm just angry. Like, I don't want this to be happening to me. And I NP Whoa, you can't be angry. What do you mean, I can't be angry. I am angry.

43:48
Don't tell me I can't be angry. And yeah, I think it you know, it's a process. And there did come a point where I learned you know what, I gotta let this shit go. Right? This is not where I want to be. This is not the road I want to be on. But it's just like any you know what I think it's like grief, there's just a process, right? And there's fear and there's anger and then there's letting go. And then there's, you know, you process and you learn to move on. And I think when you come up against someone who is scared or angry that you have to say, all right, right. Talk to me about that. Tell me what things are making you angry, like what are you angry about? Because it is okay. You know, it's okay. And it's completely justified. I mean, yeah, of course. It's like, Hey, I did all the right things and look at the universe through my way. I don't want this. So this reminds me of you sent me a link to a great podcast. And also the woman who was being interviewed on that podcast has a company that is empathy cards, and I'm going to post links to both of those in the show notes because, okay, I bought her book, you know, there's no good card for this. I bought her sticky notes because again, I'm a big poster.

45:00
No fan. And they're just so cool and so funny. And her empathy cards and her book is all about really, the stupid things people say to us before, after cancer. But like you said, they don't mean to be so like, they think they're doing something good, right? They may think they're encouraging or saying something positive. And when you're the one on the other side dealing with the cancer or the aftermath of cancer, you're just sitting here going, like, what are you thinking? So it was, so it was just hilarious to listen to that podcast, and then to get her book and read her cards on like, I'm sending one of these cards to everybody I know, forever. They're so awesome.

45:44
Yeah, it's, it's made this whole experience, especially with the chemo brain has made me such a better therapist. Because I sit every single I work today, and I sat with a man today who just had a stroke and can't talk. I said, you know, nobody asked for any of these things. And I have always been empathetic. And I've always been sympathetic, but there's a depth to what I can understand now with my patients that I didn't have before. And I sometimes, you know, I choose who I share this with, but sometimes I will share. You know, I'm going through these things with chemo brain and I understand to a degree what you're going through. And

46:27
it is helpful for people to know that I'm not just somebody in scrubs, I actually have been in the bed. Yeah, I know what it's like. And there's nothing more powerful

46:42
than being in that space with somebody. There's like a sacred space of suffering that

46:48
you know, that we have all been as breast cancer survivors.

46:53
But it's, you know, we really don't need to solve it. We need to be there with each other. Exactly. Oh, god, that's so well said. And so well said that that's where we're gonna end this show, because I want people to remember that.

47:07
Okay. Unless you have something else you want to add? No. Did all my words come out? Oh, my God. Great. Yes. Yeah. It was awesome. Marianne, thank you so much for all the time for all the insight and for all the great tips. And I'm gonna look forward to having you on again, as you create more and more awareness about the impact of chemo brain. Well, thank you. Thank you so much for having me on and the privilege to be able to share this with you. I hope you enjoyed that show as much as I did. I think Marianne is a spectacular, brilliant lady. I love what she's doing. And I love what she's overcoming, and the example that she setting, and I'm so honored to know that I get to have her as a part of my life and that our life paths have crossed. So do check out this episode's show notes at Laura lummer.com, forward slash 58. And you will find a link to Maryann's published article. And also the reference the article that she spoke about that talks about different treatments that are effective with chemo brain. And you'll find all the other links that we discussed here on the show. Thank you again for listening. I really hope you enjoyed it. And I'd love to hear your comments on the show or other things you'd like to hear on the podcast. You can find me on Facebook as Laura Lummer on Instagram as the breast cancer recovery coach. And if you're suffering from chemo brain, I hope you grab a post it note and write that down. But come and follow me and go to my website where you can download my free guide four steps to healing after breast cancer. And if you go to my Facebook page, you can actually find some videos a series of four videos that I recorded that go into depth a little more and talk about why I recorded these and why these are important steps in recovery. All right, well, thanks for listening. And until next week, take care of yourself. Celebrate this Breast Cancer Awareness Month by celebrating your survival. Best way to do that is to enjoy every single day of your life. I'll talk to you next week. You've put your courage to the test laid all your doubts

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your mind is clearer than before your heart is full and wanting more your futures

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Give it all you

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know

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you've been waiting on

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this