Managing the Emotions of Metastatic Breast Cancer When You’re Young

This podcast episode is made possible by Lilly and Novartis.

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org Senior Editor, Jamie DePolo. 

Jamie DePolo: As always, thank you for listening. This podcast is the audio from a special virtual community meetup featuring licensed clinical social worker and grief counselor, Kelly Grosklags. Kelly helped community director Melissa Jenkins lead this meetup on managing the emotions of a metastatic breast cancer diagnosis at a young age. We hope this podcast brings some hope and comfort to people living with metastatic disease. 

Kelly Grosklags: I am Kelly Grosklags. I practice out of Minneapolis in Minnesota, and I come to you today... I've had the honor of talking with many Breastcancer.org groups and feel so honored and have been interviewed for their podcast also. So, if you didn’t know they have a podcast, please check that out. It’s a fantastic podcast.

I come to you as a psychotherapist who’s worked in oncology for 30 years. I am not a survivor, I do have people living with breast cancer in my family, but I certainly just want to be transparent that I come today for somebody that again has worked with people and has been taught many, many lessons. 

My youngest patient with breast cancer was 18…is 18, and my oldest was 100. So, a lot in between. And what I like to do in these is give you an opportunity to talk and to ask questions. I come with a little bit of a conversation, but I don’t want to come and lecture you because I don’t know that that’s what you're going to get the most out of. I'd really like to have this be more of a conversation. One thing that would be really…I was just going to ask people to say where they’re from. [Redacted]…

Melissa Jenkins: I added to the chat. It’s…

Kelly Grosklags: Okay. Great. [Redacted], I love the show Outer Banks. (laughter)

I don’t know. It just…that just made me think of that. So, you guys look like you have beautiful, beautiful land there and whether that’s fairy tale or probably in Hollywood, but nevertheless it looks gorgeous. Not filmed here, isn’t that funny. 

So, I want to start off just by reading something. Because when I get asked to meet with women who are living with metastatic disease, or men, of all diagnoses, one of the main things that I hear a lot of is fear. So, the emotion of fear. The fear of what if. The fear of the unknown. The fear of the scan, the scannxiety. The whatever it may be, but fear tends to be something that, especially if you're in kind of that earlier onset or earlier diagnosis, which early in some ways is like that first year, right? Trying to navigate all of this. So, I wanted to read something out of…and I maybe know or have met some of you online. I apologize if I'm not remembering everybody. I'm looking at names and I, yeah, there’s a couple of you that are familiar. 

So, my first book is titled, A Comforted Heart, and it is my perspective as an oncology psychotherapist about finding meaning during hope, illness, and loss. In there…what I was thinking about today, I opened up this page and I thought I'm just going to share this with you because it feels relevant, and I'd like our conversation to kind of springboard off of this. 

So, it’s titled “Coping with Fear.”

'I see my share of people who are tormented by anxiety and worry on a daily basis. Often, I'm working with people who are worried about an upcoming scan result, a biopsy result, a difficult family conversation that needs to be had, or other changes in their world. What’s important to remember is that being scared is natural. In life, and we make our situations more difficult when we add catastrophic feelings and isolate our fears, and not tell anybody. Our coping can become compromised. The type of thinking threatens our overall well-being and health. It's important to reassure yourself, that in the moment and remember that no matter what the results or outcomes are. You will be somehow okay and there will always be a plan. 

People tend to isolate themselves when they are fearful. I always encourage people to share the cause of their worry with someone that they trust. You’ll be amazed at how much better you can cope with things if you do not feel alone. Sometimes our anxiety and our fears can be diminished when we share. The evidence that we create in our heads is false until proven true. Again, it’s important to stay in the moment. Imagine yourself breathing in white, peaceful light and breathing out dark toxic energy. Going for a walk, meditating, talking to somebody trusted, coming to a group such as this, and working hard to stay in the moment while breathing, are very good things for coping with fear. Remember, there will always be a plan.' 

Another thing I often talk about is, in this moment that you're living right now, was once your unknown. So, one of the things we fear the most, in particular with people who are young because there’re so many what ifs coming up. When we get to the unknown, it becomes our known. So, whether it’s, oh my gosh, what if there’s progression, oh my goodness, what if I…for young people it could be fertility issues. What if, what if, what if. And to human nature, myself included, we tend to be catastrophic. The what if isn’t often, what if it turns out great? What if things are…it’s the anxiety tends to lead us down the what if catastrophically. 

One thing that might be helpful again is to breathe and ground back into the moment and remind yourself that whatever it is and whenever you get to those unknowns, they become your known and there’ll be a plan. That has a lot of benefit on the psyche and the nervous system. To reassure yourself in that you won’t be alone. Too often this society encourages us and actually we get accolades, right?

How many of you have a Caring Bridge or a blog that you tend to write on? Does anybody? Or send out email updates to people. We get a lot of responses. People get a lot of responses; "You're so strong, stay strong, oh my gosh I admire your strength, how do you do this, I don’t know how you do this." And it’s all these accolades for being strong, whatever that means. What I always try to do with my patients is encourage them to be transparent and vulnerable, always to truly talk about the emotions that are going on. The interesting thing is navigating emotions that are difficult can only be done if they are shared. It’s really hard to navigate these things on our own. But again, we get a lot of accolades. 

I also work in the space of grief and loss, and bereaved get a lot of that as well. Oh, I just don’t know how your supposed to…you're just so strong, you're so strong, you're so strong. This isn’t about being strong. This is truly about being authentic and real. And I really hope for every one of you on this call that you have at least one person, at least one, who you can be real with. Who isn’t going to say, yeah but. Who’s going to be able to hear you. Now if you don’t, welcome to a group that can. Welcome to a group that can. 

Because when we create space and it’s a softer landing and we express our emotions, all of them, the difficult ones, the joyful ones, the whatever ones, and somebody holds that, there is researched evidence that sharing our discomfort or our anxiety has a positive effect on our psyche our nervous system, our body, our soul.

But again, and this is where I want to open up the conversation, when you think about not expressing to people what would be some of the reasons for that? And let’s start there, and what I would love is, Melissa, how do you want people to do this? Do you want people to use the chat feature or just jump in? Do you want them to like raise their hand?

Melissa Jenkins: Yeah. I'd love people to raise their hand just, or let us know. 

Kelly Grosklags: Okay.

Melissa Jenkins: Again, if anybody feels comfortable, if you show your video, it’s easier or more conducive to conversation, I understand if you don’t feel comfortable, but let me see your hand or you can use the function with the Zoom.

Kelly Grosklags: Who would like to start us off? A little bit about maybe why you wouldn’t want to share tough emotions or any emotions with the people in your life? 

Melissa Jenkins: [Redacted].

Female Speaker 1: Hey. I’ll start off. I've been a teacher. I'm just, it’s part of my passion, part of my purpose. Been a teacher forever. So, I've always been the cheerer upper and the pumper upper and the one that kind of makes everything okay, and the last thing I want to do is make somebody upset or sad or make them worry. And so, I've had to really think about how I share with others to make that not happen. 

And I'm trying to learn how…I'm trying to learn that I'm not in charge of their feelings, but I just don’t want anybody to be sad. 

Kelly Grosklags: Thank you, [redacted]. And that is a very typical response. When I ask that question, people…a couple things. The people in our lives have a right to feel how they feel, just like we do, right? Secondly, one of the greatest advantages to sharing besides that you feel better when you share, is that you then give them the permission that when they’re struggling to share with you. Because what ends up happening is, if we don’t share with people when we’re struggling, we’re essentially telling them, don’t share anything with me either. 

So, when we share, we give them the permission. It’s like it’s this infinity sign, if you will. If you know what an infinity sign is, it’s a figure eight laying on its side. But that infinity sign is really what creates healthy relationships, and we want to keep it flowing. So, sometimes it’s going out and sometimes it’s coming back. Sometimes it’s going out, sometimes it’s coming back. So, that’s one of the things to think about. And I really have to do that too because, [redacted], I get this, like especially if you were the person that people looked to, to be the cheer me up or the teacher, the cheerleader, the you can do this. 

You know, there’s nothing…there’s, there’s space in this experience for both. There’s space for you to cheer people up at times, but also for you to get support. It’s not either or, so it’s both and. We can both hold space for other people and…and support them, and get support ourselves. Generally, especially with women, what ends up happening is we forgo our own need to make sure others are okay, especially when it comes to children. And I, and I understand that, but I will just say that…just think about that next time when you’re wanting to protect people by not telling them how you’re really doing. What will happen for them then in the future when they’re struggling with something. Will they feel comfortable coming to you? I think that’s the other thing. And again, that infinity sign. So, I don’t know if that makes sense. 

Melissa Jenkins: [Redacted], you wanted to weigh in, I think. 

Female Speaker 2: I was going to weigh in, but Kelly, kind of, hit it a little bit on, the nail on the head at the end of that.

But I would also just offer up. So, I was stage II a couple years ago. I'm stage IV, actually. So, I think for me sharing, you know, I want to…every time I'm with people I just want it to be a great experience, and I don’t want to share when I'm scared about what I fear about because who knows when you're with that person again and doing certain things and I'd rather live in like a happy place. And I think often, I know in the beginning like with my stage II, sometimes when you do share your fears and your thoughts, I think the natural reaction for the other person is to try and fix it.

Kelly Grosklags: Fix it. 

Female Speaker 2: And so, they’ll say, well, you know, my friend from my euchre club, blah, blah, blah had breast cancer and, and sometimes as much as people are trying to help it’s almost infuriating because everyone’s journey is just so incredibly different and while they think they’re helping by saying, you know,[female speaker 3] did such a great job. She’s fine. She’s strong. She’s a fighter. She was great. Like it almost makes it kind of just take your fears and your thoughts and like not validate them or something.

Kelly Grosklags: That’s right. That’s right.

Female Speaker 2: I would just kind of say that would be my other reason why sometimes it’s easier to just not share my fears, not share my thoughts, and just be that normal person who isn’t the breast cancer woman, she’s just the woman. 

Kelly Grosklags: Yes, [redacted]. Yes.

Female Speaker 2: I just want to be that person. I did not mean to cry in front of 20 people. But I would…

Melissa Jenkins: [Redacted], just so you know this is the place to do that. It’s normal. We do. Everybody does…a place, and you are with everybody here with metastatic. So, everybody here is stage IV. You’re not alone and this is…if you can’t open up and share here, where can you?

Female Speaker 2: Yes, exactly. But I would just say that was the old…

Kelly Grosklags: That was the old permission. 

Female Speaker 2: Yeah. I would just say that’d be kind of my second thing, is like everybody’s constant need to like compare and…

Kelly Grosklags: Yeah, yeah. Yes. Thank you, [redacted], for bringing that up. 

Female Speaker 2: I’ll mute now. 

Kelly Grosklags: Oh no, no, no, no, no. And you know thank you for…

Melissa Jenkins: It’s a conversation here today.

Kelly Grosklags: Thank you for showing us your feelings, you know. We’re at an event about emotions, so the tears certainly are appropriate and so is laughing.

I will say this, so, there are the grocery store clerks in our lives that ask us how we’re doing, okay, who don’t really…and I don’t mean they’re literally grocery store clerks, maybe you do know grocery store clerks, but that’s a metaphor. How are you today, de-de-de. 

Now I will tell you there was one time I was in a really bad place, and they asked, and I could not contain it. And it came out, waaah. I have never had my groceries bagged so quickly in my entire life. It was like woo, woo. I mean, she did not know what to do with me and I was quite surprised myself. I mean, I'm crying in the Target, you know. So, those are the people that we know, we have to learn who our people are and who we can trust. 

There’s a beautiful thing and it’s a very quick thing that I often will encourage, again when I work with grievers, is what we say to people is, I don’t need to be fixed, I need to be held. Okay? I do not need to be fixed. I need to be held. Now sometimes that means figuratively and sometimes that means literally. Okay? I need to be held. I need my emotions held. And I think that is the most important thing people can do for us.

Now, sometimes, and not…I mean, oftentimes, and Melissa, you probably heard this a lot. People don’t feel as close maybe to their family and friends as they may be do to somebody that they’ve never met on a group on Facebook or whatever. 

And those are not invalid relationships. The point is, where is your soft landing? Where is your place that you can say things and not have somebody have to fix you? Now sometimes, and this is another thing I’ll ask people, are you talking to me today because you want some advice or do you want me to listen? That is another beautiful thing that we can say to our support people or to our friends. Sometimes they’ll say, I need some advice, or they’ll say, I just need you to listen. 

Melissa Jenkins: Okay.

Kelly Grosklags: Oh, go ahead.

Melissa Jenkins: Go ahead. No. Go, Kelly. Sorry.

Kelly Grosklags: Well, I was just going to say, and sometimes people need reassurance and it’s not about, oh, my co-worker, Missy, had this and she was so strong and you're going to be strong, too. It’s not that. It’s the reassurance meaning, I'm going to be here with you and I'm going to walk with you. And it doesn’t matter. The known is going to become, you know, the unknown where we’re walking is going to become the known, but I'm going to be here with you. And I think that that is a really important thing that we need to hear, and we need to share with our people, is that we truly just cannot…we can’t do this alone. We just can’t. And [redacted], I also really honor that you want to be the person sitting around having a glass of wine like all the other people you’re sitting with and not have the topic be about your cancer. 

Female Speaker 2: Yeah. And I see, [redacted], well, who’s on here. I kind of idolize her. She was on the…I know, [redacted], you were on the podcast where your episode was like, The Light Within the Darkness, is what I think was the title, and I listened to that podcast over and over again. And I think that’s what you mean, like I want to be the one having a glass of wine and like seeing the light, you know, within the darkness. So, that’s exactly how I feel, why I wouldn’t want to share stuff. But yeah, kudos to [redacted] because I do…I listen to that episode over and over again, so. 

Kelly Grosklags: Is that on The Breastcancer.org--?

Female Speaker 2: It’s through the Wildfire Community. 

Female Speaker 3: Wildfire. 

Female Speaker 2: I really enjoy their work, so, yeah.

Female Speaker 3: Sorry. I just came into a different room. My mom came home from a rehab place yesterday so I'm kind of…and the PT is here today. 

Kelly Grosklags: Oh my goodness, [redacted]. 

Female Speaker 3: … in this moment, so I'm trying to do both like help and also be here. But that just totally made me tear up. That was an essay that I wrote for Wildfire Magazine and then in that podcast you read them aloud, and I had adapted it from a talk that I've given. I've also gone really deep. I will add, just if it’s helpful, on positive, and [redacted], thank you, so, so much because, and this is how we all elevate others. I've cried many times over the past few days and weeks and I'm emotionally exhausted and just feeling that impact that I had on you before even meeting. It helps me to at least trust there’s some meant to beness. I'm Jewish, I use the word bashert a lot in this whole journey. So, thank you for, for sharing that. 

I went really deep on positive psychology when I was first diagnosed. I was also initially stage II and then stage IV, and I had been getting screened since I was 32. My mom had breast cancer decades ago, so I was maybe a little high-risk although we’re negative for all the genes. And I came to realize like so many of us on this call know, you can do all the right things and be as vigilant as, you know, every says, and still end up metastatic. And I was studying positive psychology during my early-stage diagnosis on a medical leave from work, and I just had this moment of how did we not all learn this? Like before anything goes wrong and like…and if you don’t know that’s the science of human flourishing. 

And I was learning about things like, and a lot of the things came up in this pod. The reason I'm sharing this is, there are things that I referenced in this Light in the Darkness and in this podcast, and the meaning and purpose and post-traumatic growth, and the opportunity that we have, even though it sucks and it’s an obstacle and all those things, if we can find even a little meaning, and the beauty of meaning, as I've studied it, is that it’s subjective. And the only thing that matters is that it's authentic to you. So, like, each of us will take different meaning from this. And some days it’s really hard to access and, full disclosure, I lost one of my closest friends in our extended stage IV community last week and it was a real shock. And I'm juggling a lot with my mom who had an accident, and she’ll be okay, but I'm sort of caregiving, and my emotional bandwidth, right? We all have moments where it’s just zero. And I haven’t even processed that. 

So, not every day gives us a day where that meaning, and purpose is accessible always. Like I, I even as an expert in this, but the more we can kind of trust that there’s something in this journey that is like being able to, [redacted]…I'm sorry, not [redacted], [female speaker 2], you gave that to me in this moment where I've been really struggling and feeling really low. And so, sometimes, it’s that one-to-one, sometimes it’s a podcast comes out, and it’s for many. I built a LinkedIn following. I have a little on Instagram, but I post regularly on LinkedIn, including this kind of work. And I share it all because that’s how I find the light. 

And when I first discovered positive psychology, I was like how did I never learn this? Because I have a psych degree undergrad from Harvard, no less, and I have two master’s from Standford, including one in education. So, here I was like having graduated from these schools were like, air quotes, the best. Honestly, not the best, but like reputationally those were schools that you expect you're going to learn important things and they weren’t teaching us like how to be resilient in tough life moments, which all of us know from the inside. So, I would encourage, if it’s helpful, may…maybe there’s opportunity to have a call on positive psych, I'm happy to like help, you know, with slides or whatever can be if that’s helpful to this group. But I just wanted…I've talked too long. I'm going to mute myself and go back into the living room, but I just wanted to say hello and just jump on that, what [female speaker 2] said, in case it’s helpful. I hope, I hope it was. 

Melissa Jenkins: Thank you, [redacted], and the best to your mom. 

Female Speaker 3: Thank you. 

Kelly Grosklags: Yeah. Thank you for sharing that, [redacted]. And again, you know, and I’m, I'm reading some of the comments here about that you don’t want to scare your family, and I don’t want them to treat me differently, and maybe I feel slightly guilty or embarrassed of my diagnosis. Mm. That’s hard. You know, when I hear people talk about embarrassment…go ahead.

Melissa Jenkins: [Redacted] was about to ask a question. 

Kelly Grosklags: Oh, go ahead, [redacted]. 

Female Speaker 4: Sorry. I couldn’t figure out how to do the raised hand. 

Melissa Jenkins: That’s okay. I saw you. I saw you.

Female Speaker 4: Okay.

Melissa Jenkins: That’s why I like [cameras on] so I can see people. 

Female Speaker 4: Okay. I don’t know if it’s like super relevant to what we were just talking about in terms of like, the positive mindset, but back to the initial question of how, that you're, I guess, sharing the news to others.

For me, so, a lot of it where I struggled was trying to kind of…one, like you said, it’s kind of who you're sharing it with. So, if you're sharing it with like someone who’s a more grocery clerk or like that level of relationships in a more like casual setting versus a more like deeper, intimate setting. But a lot of, I think, what I was trying to do was like trying to protect myself first, I guess, and I think sharing the news. Yeah. 

There’s like the vulnerability. It makes it harder sometimes when you say it out loud what you're going through and like how much, and how, like even just it’s reassuring to be here and be like, okay, it’s stage IV. It’s such a progression in such a short period of time. For me, also this was like, the type I had was triple-negative, so it’s very aggressive. And I had to go into chemotherapy pretty much like two weeks. Like I had found out…well, I got the biopsy results. I guess when they did the initial stage, they thought it was stage II, and it was stage IV because they did an overall scan, and they saw it metastasized to my liver and adrenal gland. 

And when I had to get into the neoadjuvant chemotherapy, I had to make a decision to do it pretty quickly because of the aggressive nature of the cancer; chemotherapy seems to be the first course of treatment in addition to immunotherapy. But those were the kind of the two tools that were given to me to do and treat it. And I've, actually, gotten really positive results. Like I got a clear PET scan. I just had a lumpectomy procedure, which had a clear pathology report. So, I'm like really…yeah. I guess I can be a little guarded in terms of that protecting-yourself element and I'm just curious on what your take is. 

Kelly Grosklags: Well, you know, I…thank you, and I'm so happy for you that the treatment is, that you’re responding to that. That makes me so happy, [redacted]. So, I'm so grateful for that. And I think, I'm not…please don’t hear me suggest that you have to tell everybody everything. That isn’t at all what I'm suggesting. And in fact, you get to choose who and what you want to tell. Like that is absolutely appropriate.

One of the things, and I've seen this happen in families quite a bit, is you tell one family member something and then they get it wrong and then they tell the other family something and then, oh, my God. 

And I'm Italian, so, I'm just putting that out there as something of interest because it’s de-de-de-de-de-de-de-de and then by the time they get back to you, you have prostate cancer. You know what I mean, it’s so wrong that it’s like, that’s not even a possibility, you know. But this is that game of, you know, telephone. So, you absolutely get to be mindful in choosing who and what you want to tell. My hope is that when you're feeling really scared there is somebody, and by the way, I'm hoping that’s somebody who can be in confidence. Like this is confidential. This is not something I want you going and talking to mom about or your husband about or whatever. It’s my story to tell and I’ll tell it. 

It’s an honor and if you, you know, all of you on here have had a friend confide in you or a family member confide in you or a work, a colleague confide in you about something. It’s an honor to be a person that they feel is trustworthy enough to hear this hard stuff, and we have to treat that with sacred hands and hold it. And it cannot be something that is shared. Sometimes that has to be said, but I'm hoping it’s assumed, and it doesn’t mean that, you know, and everybody can, everybody walks this differently and there’s not a bad way or a wrong way to do it. 

There are better ways for your psyche and your soul. And that’s what I really want to get across today is, if I asked each of you, right now, could you write down one person’s name on a piece of paper that you would feel safe with. My hope is that there would be. And if there’s not, then it’s like that’s where we kind of pause and go, what is that about? Is that about that they’ve hurt me? Is that about that I don’t open up? Is that about that I'm protecting them? Is it about there’s abuse in the…whatever it may be. Then what we do is we lean into places like this, and this is what’s important, or a therapist, or a rabbi, or a chaplain. 

Melissa Jenkins: [Redaced] would like to speak.

Kelly Grosklags: Okay.

Female Speaker 5: Hi, everybody.

Kelly Grosklags: Hello. 

Female Speaker 5: Today is actually my one year. Tomorrow, I start my year two.

Kelly Grosklags: Wow. 

Female Speaker 5: So, this was new for me, but not so new like everybody else in some cases. My mother battled for 18 years. So, I have the perspective of looking at it from a family member, a child watching their parent go. So, my fears are a little different because I know what’s to come. But like you said, you always have to have that one person. I'm fortunate. I have more than one, which God blessed me with an enormous family. I'm Cuban, like Italians, we play telephone or hot potato as I call it. 

Kelly Grosklags: Yeah.

Female Speaker 5: So, a lot of the times when I want to tell my family, like when this whole thing went down, I had to make 45 phone calls because I wanted them to hear it from me directly. So, I chose my top 45 family and friends that I needed to tell this too. So, they heard it from me. 

Kelly Grosklags: Wow.

Female Speaker 5: That’s how big of…and that’s just one side of my family. The other side is very small. My mom’s side was very small. My dad’s side is enormous. And I live in a town with 12 of them. So, those were the first ones I called. Being that I don’t have my parents, it makes it difficult. My father also passed away of cancer. He was a smoker. He dealt with lung cancer. So, I've had it from two angles. And I'm happy they’re not here, to be honest, because I think it would have hurt them tremendously, especially if they had been sick to hear that I was coming in stage IV from the beginning. But I confide in certain people before I decide to or how to tell my family.

Kelly Grosklags: Yeah.

Female Speaker 5: Only because I know there’s so many. So, what I decided to do was, we started a family chat so that way they hear it from the horse’s mouth, as I say, because I am probably the biggest mouth in my family. I'm also one of the most confident people in my family. So, it’s a little strange to be like the most confident, yet the most wild person in the family. My cousins…I'm 45 and I'm the oldest of 11 cousins. I have a son that will be 18 next month, and a single parent. Like I raised my son by myself. So, there’s a couple different factors for me of how I approach certain things. But I decided to rip the Band-Aid, tell everyone from the get. 

Kelly Grosklags: Yeah.

Female Speaker 5: And they’re like, but you don’t look sick. How many times do people tell me I don’t look sick? About three months ago, things made a little bit of a change. I've had to have emergency surgery to one femur. I'm now having a hip replacement to the other. So, approaching my family with, okay, my PET scan didn’t go so well. Here are the new things. I had a brain scan. I had all these things in a matter of three months, and I gave them little by little, we’re going through some things. Some things are coming up, but I toughed it out. Kept a straight face til I had to throw the bomb on all of them. 

And now my biggest thing with my family and my friends isn’t so much as expressing how I feel, because they’ll all listen to me, it’s how they feel. I decided to approach this differently because I have a couple cousins that are very emotional, and me being the oldest and them all younger and new parents, I knew it was going to be hard for one or two of them. And also, my friends because I'm also probably the oldest of my friends, too. I have a very young…I keep my crowd very young and fun. But at the same token, we’re all going to have these different emotions. It’s inevitable. Because I have my days that I'm like, oh yeah, I haven’t gotten my period in eight months, but I still get PMS.

Kelly Grosklags: Yeah. Yeah.

Female Speaker 5: So, I cry and cry and cry, and being a single parent, you know, I cry for my son. But I felt like approaching it with, tell me how you feel and what you fear about what I'm going through. Because it changed the perspective a little bit, and now I understand everyone’s point of view. And I reassure them, especially my son. And the biggest thing I decided was to not wait to tell them to not try to sugarcoat it because my mom did that to me and it hurt me in the end because I didn’t know how bad she was ‘til I got to her house and five days later I'm calling an ambulance and five days after that she passed, after an 18-year battle.

So, you know, I wanted to approach it differently and I wanted to approach everyone’s feelings because yes, I'm a people pleaser. I'm an everyone person. I love people. I go to the hospital even and they think I'm nuts because I walk in there like, I can give you everyone’s name and something about everyone there. Because I figure if I'm going to spend one day a month with these people or in this case, recently, more than that, talk to me, tell me about yourself, give me a little something. We’ll talk about cancer for 15 minutes, we’ll talk about you for 15 minutes, and then, we’ll talk about me for 15 minutes. 

Kelly Grosklags: Yeah. Yeah.

Female Speaker 5: And there goes my appointment. And I feel like it makes it easier when you have to have the harder conversation. 

Kelly Grosklags: Yeah. Yeah. It’s that building of trust. 

Female Speaker 5: Yes.

Kelly Grosklags: Thank you so much, [redacted]. Thank you.

Female Speaker 5: You're welcome. 

Kelly Grosklags: I really appreciate that. You open up…I would love to open it up, now. I know I, originally, asked about questions, but let’s talk a little bit more just kind of free for all, maybe. Anything else that people want to share, but also what does…since we’re talking about navigating emotions.

What kind of…I mean, I will also say that sometimes people struggle with the emotion of joy, and they don’t necessarily want to show they’re joyful because people might think, oh, they’re okay and they don’t need me anymore. I mean, there are so much…there’s so much thought that goes into our emotions. We check them, we analyze them. Should we show them, should we not?

And I'm hoping that because so many of you on this call have very limited energy already. Can we spend the energy just really showing up to ourselves emotionally and then again, our trusted person or people. Does anyone else want to talk a little bit about kind of what emotion is circulating, what is hard for you, right now, that we can talk about? Or ask any question really. You can ask anything. 

Melissa Jenkins: [Redacted]. 

Kelly Grosklags: Hi, [redacted]. 

Female Speaker 6: Hi, it’s not related to what you were talking about, or what you just asked about, but I…so, I've been going through this for two years now, and I was pregnant when I was first diagnosed…my daughter is healthy and great, and I have a six-year-old son. So, I am the oldest, oldest of five kids. They’re like my people, but they’re my, I look at them before having kids, I looked at them as my kids. So, a lot of my life is, you know, about protecting them and that kind of thing. And you know, I was working. All of these things. I have a husband. Right now, emotionally, I think, I have stopped working. I'm home all day long. I don’t prefer to go anywhere. I'm glad that I don’t have to. But some laziness has set in. I mean, I dealt with a lot of pain. 

My husband took over all of the household work and I, kind of, you know, I felt horrible like I'm, you know, I'm not contributing to this, I'm not contributing to our family. He is working full-time. He’s taking care of the kids. He’s doing laundry. He’s cooking meals. He’s doing all of these things. So, I've dealt with that for a little while and now physically, I'm mean, physically things still suck but they have improved and one of my fears was that I was going to get better, feel better, and just not want to contribute because like what is my life, like what, who, like, I don’t know. They were just, am I going to want to be a part of this family? Am I going to want to contribute?

Yeah, I can still be a mom, but I don’t want to do laundry. I don’t want…like I don’t want to do these things. And I don’t even know why I'm bringing that up, but like my…my current disposition and situation is that my son is six now and he has a better understanding of what is happening. And those conversations with him are different than they were two years ago. And sharing that with my people is something that I'm struggling with. 

Like, I don’t know about like…I don’t know if you guys are familiar with like the ACE study, adverse childhood experiences and that kind of stuff, but that’s something that, like in my field of work, and even in my childhood, like a big deal. And my childhood was rough, and my ACE score was high, and my parental disposition is to protect my kids at all costs from ever experiencing anything that I went through. But my child has a parent with a chronic illness so now he has a tic on his ACE score and that is a thing that I struggled to wrap my head around and struggled to share with other people. 

Like I want to have that conversation with my sister and tell her about the things that my son and I talk about, but I also want to protect her from the rabbit hole that I know she’ll go down because of who she is as a person and because she’s my little sister and all of these things, but that’s kind of where I'm at right now. Like I want to have these conversations with my circle about life right now, which is my kid questioning who’s going to be his mom when I die. And my kid waking up in the middle of the night and asking me if I'm okay, and do I need him to call his dad because my husband works third shift. Like these things that I don’t want him to have to experience and go through and struggle with. And my daughter’s waking up, right now. But wanting to…wanting share that with my circle and just, you know. 

Kelly Grosklags: You know, [redacted], you share that, you share it so beautifully. You know, a couple things about the ACE score is we can't really, you know, we can't prevent when these things occur, right? We can't prevent diagnoses. We can't prevent death and some of these things that can happen on those ACE scores, but we do know that even when those things occur, if people have good support and the child has resources that the impact of the, oh, what a cutie, ah. Hi. That the impact of those traumas can be different. Can land differently. And so, when people are feeling guilty that their children have to experience whatever, them living with a disease, what I will say to them is, that isn’t in your control, but what is, is getting these resources in for those kiddos. 

When you’re talking about your sister, one thing that came to mind, and this would be appropriate for everybody I think on the call is, you know, when people talk to groups like this, I always think they are so eloquent and so beautiful in how they express things that I wish their people could hear it. Because if your sister were on this call and she were listening to what you were saying, [redacted], I would be very curious how she would respond to that. And one of the things that can be very helpful with our support people is to ask them how much are you comfortable with me sharing and how much can you tolerate my difficult days?

I also think we have to remind people, it is not your job to fix this, it’s your job to hold it. And I think that that’s just really important, but you could ask your sister, I want to share these things with you about what my son and I talk about, but I don’t know if it will be too much of a burden for you. I need you to tell me if it’s too much. Whatever it may be. But let’s give people the option. Let’s give people the chance to say to us, you know, I do want to hear it. Let’s not make the decisions or the assumptions on other people’s parts. Now, it is going to be hard for them to hear when we’re suffering if they love us. It is going to be hard, but they…and I've also worked with many caregivers in the world. They feel better ultimately in the end if they truly know how you are doing. 

If they feel like they can be somebody that listens and supports. It doesn’t mean they don’t have sadness about it, but the no communication is harder on the people that love us. It really is, it truly, truly is. If you talk to any caregiver, and if you think about yourself as a person who loves other family members, if something big were going on in their world, and you didn’t know anything about it, it would be hard on you. So, again, back to, we get to choose how, and how much, and who we want to share these things with. I think if you don’t walk with anything else today though, my hope is that you walk away with, I am worthy of someone else holding my story with their sacred hands and hearing this. And I can't do this alone. 

And like [female speaker 2] was saying, some days she doesn’t want to talk about it. That is okay. Okay? This isn’t something I'm saying every day you have to wake up and call people and give them a rundown, but every day you also should not feel like you have to keep it inside. So, [female speaker 2], I see that you have another comment. 

Female Speaker 2: [Female speaker 6], I have a younger son and daughter, too, so I am definitely empathizing with you, and I think that that’s a big thing to bring up, and I think [female speaker 5] kind of maybe touched on it, too. But this whole idea of sharing your fears, and your thoughts, and your worries, and you're scared, but then, they look at you and they say, but you don’t look sick. You don’t look sick. And so, how, you know, like [female speaker 6]’s saying, how do you tell your child about something, how do you explain it to them when you don’t look sick?

Kelly Grosklags: Yeah.

Female Speaker 2: How, you know, do you share your fears and your worries with your people and…I went through a lot of guilt, too. There’ll be times where people would make meals when they first found out about my second diagnosis. Meals and send all this stuff to the house and then here I am and maybe out to dinner with my husband dressed up all nice and ready for a nice night out. And I would have such guilt about it because I'm like, my friends are in their kitchens cooking for me, which they don’t even want to do for their own family, and here I am, you know, and I look great. I'm taking walks, I'm doing this. And then, that’s just because that…on that day I felt good, right, you know?

Kelly Grosklags: That’s right. 

Female Speaker 2: Sometimes I think sharing all this negative with people sometimes is hard, because then, they look at the exterior of you and they don’t quite, aren’t able to put the connections together. So, I just wanted to throw that out, too.

Kelly Grosklags: I had a woman that I worked with living with metastatic disease, metastatic breast cancer and she would often say to people, I wish…or she would say, she wished she felt as good on the inside as she looked on the outside because she also…because there are still some people that believe in the world that you can only have cancer if you don’t have hair. Okay? I mean, truly, like they haven’t caught up to the differences. And yes, some people do lose their hair. One of the things that’s really interesting is there’s space for all of this. There’s space for you to go out with your husband and still need a meal, maybe the next day or the next day. 

Like I'm going to believe that if people are bringing over a meal it’s not with conditions. Like you have to crawl to the door and then be really like, ah, you know, kind of thing. Like if they’re bringing the meal, you know, the reality is you're out with your husband, but you still have this noise that goes on, okay? And there’s space for it and it’s not, you know, again, let’s receive with that infinity sign. Let’s receive that meal out of the graciousness that it was given and allow ourselves to receive that because we know that even people that are out for dinner are living traumas, surviving traumas. They have had really hard things that have happened to them. 

We know that people that are out that look…we know that, wow, we certainly know that on Instagram or Facebook, when people are looking at the top of their game. After that post, they’re falling apart. Okay? We know these things and we have to give grace for them and grace for ourselves. But we know, [female speaker 2], that would…good for you for being out with your husband. The damn noise is still there though, you know. The noise is still there. And so, if for two hours in your day, you get to be dressed up and go out for dinner, how great is that? Because that can be the antidote for the other hours where maybe you're feeling worried and protective of your kids, and all these things.

You know, kiddos, the thing is, is we have to be age-appropriate when we talk to them, right? I always encourage people to use the word cancer, however. Even, it doesn’t matter how old they are, but to use the word cancer. This is not a monster, this is an illness, and it’s called cancer. And there’s some days that mommy’s going to feel okay and there’s some days that mommy doesn’t feel good. You can, I'm going to promise you though, that on the days I don’t feel good that I'm going to call the doctor and the doctor’s going to help me, or something to that extent when they’re like under the age of six. 

We want to reassure them that we’re in control of this as much as we can be and that they don’t have to worry about us not feeling good, and that’s maybe with [female speaker 6], too, with her child in the middle of the night. It’s like, I’ll tell you if you have to call daddy. I’ll tell you. That’s not something you have to worry about. But again, you know, every day is going to be different, just like it is without metastatic disease. Every day is going to be different, and you can't really predict. If you're in a good space in the morning, you might have some increased pain in the afternoon. Or all of a sudden, the emotions, you know. Depression, anxiety certainly can go hand in hand with this. 

And if you're on steroids, in particular, and on some of the chemotherapies, it can change the brain chemistry. And I think it’s just really important to not try to predict the moments, but show up to them when they arrive. And that’s a really important message, to show up to them when they arrive. Sometimes they are better, oftentimes they are better than anticipating them. We show up to these emotions, we lean in, we see them. We see them. And we hold them and then we decide, do I want to stay in this space right now for a little bit with myself, or do I want to text a friend?

I have a friend that I text back and forth. We have a thing. We kind of have like a heart or a code. I can’t remember exactly what it, because it’s been a while since, but it’s like, just want you to know having a hard day and it’s like if you put a red heart that just means, just need you to know. If you put a blue heart, I need you to call me sometime today when you're off of work. You know, it’s a beautiful thing to…and it doesn’t have to be a heart. It can be, sometimes it’s like, it’s that emoji of beer, that means I'm okay, but if it’s the wine, you better get over here. So, we know beer is okay, wine is, oh my God. We need you. But it’s a wonderful thing. Who can you just put it out there into the universe with, right?

Melissa Jenkins: We have three people who want to weigh in, if possible. 

Kelly Grosklags: Okay. And we have about five minutes. So, who has not…

Melissa Jenkins: [Redacted] has not spoken yet. [Redacted, redacted]. 

Female Speaker 7: Yeah, [redacted]. 

Melissa Jenkins: [Redacted], sorry.

Female Speaker 7: Hi, all. I am very brand new to this whole world so just building up. I have a great community and great family and it’s just nice to be in a space with other people who get where we are. I just really wanted to say publicly, [female speaker 6], just you’re sharing about your son. 

Give me a sec. I don’t have my own kids, but my nieces and nephews, like I totally adore. So, talking to them just feels like just letting them know is going to be really hard. I think they’re starting to understand. But the thing I wanted to say…ooh, ooh, it just came over me. The thing I wanted to say, [female speaker 6], is just, yeah, your disease is maybe giving your son an ACE point, but you're teaching them to be vulnerable and caring and to like understand humanity in such a beautiful deep way that like I just really wanted to say it out loud, not just put it in the chat. So, kudos and I think that’s going to serve them far more than an ACE point is going to cause trouble in their life. 

Kelly Grosklags: Yeah. Yeah. Oh, [redacted]. 

Female Speaker 7: Thanks.

Kelly Grosklags: And for being new to the diagnosis, thanks for having the courage to come to this today. It means a lot, and I'm hoping you can connect with some of the women on here. I think what’s always so beautiful. I mean literally, the topic for this event could be, do you like turtles? And people come and they find these commonalities. It’s absolutely incredible. And Breastcancer.org has people from all over the world. And it just doesn’t…it has never mattered. 

I don’t know how many I have had the fortune to do with you, Melissa, on these, but many, especially, you know, through COVID. And it really doesn’t matter the age, the race, the gender, no children, children, whatever. I just have always left these with such hope for people on these calls because there is at least one if not ten people that get them. And I think there is... There is such a medicine in that and such a power in that and it really doesn’t…it truly…I have been overwhelmed with that. Of heads shaking when somebody’s talking and the power in like somebody sees you. 

And I think that is just so…and sometimes, people come on these calls, and they’re, like, I have not told a soul but I'm telling 25 strangers this. And all of a sudden, it’s like, wow, they feel better. That kind of is the basis of what I am really trying to say, is that, allow the soft landing to be there and for somebody to hold it with their sacred hands. 

I would love to invite you to follow me on Facebook, Conversations with Kelly, or Instagram, Seemygrief. I'm rebuilding my Instagram page because it got hacked, but I write a couple times a week, if not more. I have a podcast titled, See My Grief. In these virtual communities are people that have suffered greatly from horrific loss to illness to whatever it may be. And it is a beautiful space. You can interact. You don’t have to. It’s just, you know, how Facebook works. And luckily, we try not to argue, like every other Facebook platform, so I really keep that. 

I saw a cute thing today. I will just say somebody put a twig or whatever and they say, this is a stick. And then it was so funny because people were like, no, that’s a twig, no that’s a branch, no that’s a this. And you could just see…and this was group where they’re having a lot of crap going on in their life and everybody was kind of laughing at each other. In the communities like this, however you are, whatever you call it, whatever emotions you're experiencing, you get to show up. And I really am grateful. 

Ah thanks, [female speaker 1]. Ah. You know, [female speaker 1], I knew your name. I knew I knew your name. There might be other [female speaker 1], so I didn’t make the assumption. But I knew I knew it because I think you have commented. So, thank you so much. That means a lot to me, [female speaker 1]. 

And I just want to say to all of you that thank you for trusting us enough to come, staying on the call, and being real. And I hope that after this call, I don’t know that [female speaker 6] will be able to do it because it looks like she’s in demand there with the little one, but just to take a pause, write down that one name, okay? Of who your sacred hands and your soft landing is. Who is that person? And then, I would encourage all of you just to really give yourself some love this afternoon. Whatever that looks like. Is it a walk? Is it a nap? Is it listening to rock and roll music? Whatever it is, do that. And I'm so grateful to have spent this time with all of you. 

Melissa Jenkins: And before we go, I'd just like to say tomorrow, every other Thursday, we have a young, a group, Young MBC group, [redacted, redacted, redacted]. You know, there’s some members here, [redacted]. So, we welcome to continue the conversation tomorrow. It’s at the same time, [12p.m. ET]. It’s every other Thursday. We’d love to have you. We’d love to grow that group. It’s wonderful. 

Kelly Grosklags:  How do they sign up, Melissa?

Melissa Jenkins: It’s in the chat. We put it in a few times, and we’ll make sure in our follow-up email that we’re going to be sending this afternoon that it’s in there so you can register. And again, we’re meeting tomorrow, same time, [12 p.m] Eastern time whatever that is in wherever you are in the world. We can continue.

I know Kelly has to go. We can stay on. [Female speaker 6], if you want to still share and [female speaker 5] we can still stay on and just continue if anybody wants to do that for just a few more minutes. 

Kelly Grosklags: That’s beautiful.

Melissa Jenkins: Okay. But Kelly, I know that you have to go. So… 

Kelly Grosklags: I do have to go.

Melissa Jenkins: I'm going to stay on. We’re going to stay on and…

Kelly Grosklags: Thank you, friend. 

Melissa Jenkins: I’ll also be in touch with you about another positive psychology group, too. 

Kelly Grosklags: Thank you, friend. Okay. Thanks. 

Melissa Jenkins: Okay. Thank you.

Kelly Grosklags: And everybody, much peace. 

Thank you for listening to The Breastcancer.org Podcast. Please subscribe on Apple Podcasts. To share your thoughts about this or any episode, email us at podcast@breastcancer.org, or leave feedback on the podcast episode landing page on our website. And remember, you can find out a lot more information about breast cancer at Breastcancer.org, and you can connect with thousands of people affected by breast cancer by joining our online community.