The Losses We Feel After a Metastatic Breast Cancer Diagnosis

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. On Metastatic Breast Cancer Awareness Day, Kelly helped Community Director Melissa Jenkins lead this meetup on the losses people feel after being diagnosed with metastatic breast cancer. We hope this podcast brings some hope and comfort to people living with metastatic disease.

Kelly Grosklags: Hello, everybody. My name's Kelly Grosklags. For those of you that I don't know, and I recognize some of the names and the faces, I'm in Minneapolis, Minnesota, and I am honored, truly honored, to be here on this Metastatic Breast Cancer Day to meet with you. I am a therapist who specializes in oncology and grief and loss, and I am the founder...for some of you that may follow me on social media, it's Conversations With Kelly on Facebook and then @SeeMyGrief on Instagram.

Before we start, I'll also let you know that I have a podcast titled See My Grief. So, if you're a podcaster, something you may want to check out.

So, we thought, today, we could get together and talk about honoring the losses that many people feel after the diagnosis of cancer. And then, particularly, what are some of the uniquenesses of living with metastatic breast cancer?

I do not live with metastatic breast cancer, but for close to 30 years, have worked with several women around the globe with metastatic breast cancer, and have paid very close attention to things that have been said to me and things that have been shared with me. My hope for today is for us to really have interactive conversations. The last time we did a meetup, we had several comments, several questions that came through, and I want to almost pretend like we're together in person and that we're around...chairs in a circle having tea, having coffee, and so, to try and make this as intimate as possible would be great.

Everything that is said here is confidential, please. As Melissa said, it may be recorded in terms of using information, but like I noticed on the last one, there's not identifiers, you know, your names, those types of things. It's just maybe sound bites, and I heard from lots of people last time that it was quite helpful that Breastcancer.org turned this into a podcast. So, I want to be able to really address what you want to hear, so that's why we're going to open it up more for conversation.

But before I do that, one of the things I would like to do is light a candle in honor of all of you showing up today. I can only imagine what it took for some people to get here, you know, whether you have small kids, grandkids, jobs, horrible fatigue, neuropathy, whatever it may be, depression, and that you showed up today, and that's, like, a win for all of you today. And I really want to say that I honor that, but when I light this candle, I want this to be maybe some light that can come into a moment of darkness.

So, you know right now what you are wrestling with or struggling with, and maybe it's not even related to the breast cancer. Maybe it's related to a child who's struggling with mental health. Maybe it's related to finances. Whatever that may be, but let's just collectively light this candle that I will leave burning in your honor, and may that light come to each of you today and bring some love. So, honoring our losses, let's start out real quick with just an educational thing about what loss and grief are.

So, loss is the event. Loss is often a one-time thing. Somebody dies. There's a diagnosis. A divorce. Somebody loses their job. It's kind of a finite, one-time thing. Grief is our reaction to that loss, and that can go on and have layers and layers and layers. So, society has it backwards. Society has grief as an event and that we're supposed to kind of have a beginning, a middle, and an end to this, and that's not how it goes. Loss is the event. Then there's mourning, which is what we show the world and what we show our people externally.

So, if you're angry, if you're crying, if you're sad, if you're fearful and you're expressing it outwardly, that's mourning. And so, I just want to give us just kind of a little thing, and so, the diagnosis of metastatic breast cancer is the event. As a relationship...or as a reaction to that, you have likely experienced multiple losses. Maybe it's you couldn't go on a vacation. Maybe it's a loss of innocence. Maybe it's the loss of the ability to enjoy food. Maybe it is, I've been around many women and men with metastatic breast cancer, and I am very aware of the multiple losses that people experience every day through the community.

116, I think, is the actual number I heard the last time. It may even be higher, but the amount of friends that you make in this community and that you get attached to and that die, whether in support group, online, conferences, in person, wherever you get to know people is a significant loss, and it's a multiple loss when our friends and family don't understand why we are so attached and why this is so hard for us. You know, I was working one time with a woman who said, “I got more attached to this person, and she said her name, than I've ever been to a family member. And the ironic thing is I've never met her in person, but she was the one I would text in the middle of the night when I was up after steroids. She's the one that would know when I would go to her after chemotherapy and say, 'The treatment is no longer working. I'm very scared that we're at a different treatment point.' She really was the only one that understood this, and when she died, I had such bereavement and such grief, but what was so hard is my family disenfranchised it. They were saying things like, 'You didn't even know her. You've only known her a year,' and all these things.”

And so, we have to be very mindful that if we feel grief, it's legit, and grief isn't just about death. Grief is about all these ambiguous losses that we may feel that aren't necessarily tangible, but I just want to start this conversation out by saying if you feel grief, please know that it's legitimate and you don't have to explain it to anybody.

One of the things, when I work with my patients, is I'll say to them, it's not our job to make another person understand our grief story or to make another person comfortable or us have to justify. It's not our job to do that. So, let me just start off by saying that you're all welcome here, and all of what you're experiencing is valid. I imagine you're coming here today because you're experiencing some grief. You saw the title, and you thought, "That resonates. I want to come check it out."

So, that's what I want to say, is whatever we're going to talk about today...and you might not even know that what you're experiencing is called grief, and with grief can come anxiety. I think the majority of you are very familiar with anxiety before scans, before labs, the anxiety of even opening up your closed Facebook group in the morning and seeing possibly what happened overnight with the people that are in that group. Attending support group and being scared because somebody didn't show up. Depression because lack of energy.

I hear many people talk about feeling like a burden, you know. And because metastatic breast cancer has turned into a chance that people can live longer with, some people will say, "I must've used up all my support early on because nobody's calling me anymore at year five or year seven or year eight, or nobody's asking me if they can give me rides anymore. Everybody came in in the beginning, but where is everybody now?" And that can be a form of grief.

That loss of who you thought were your people and they maybe aren't there as much. Or people aren't asking you, necessarily, how you're doing anymore, and you know, if you dare wear lipstick, no one's going to ask you, and that's kind of a running joke. In oncology, when I train oncologists, they'll say, "Well, I think she was doing really well. She had her lipstick on today, and she had this nice sweater." And I think that's the thing I see with metastatic disease, sometimes, too. Is that people might not feel as good on the inside as they look on the outside, and I think that that's just something for all of us to be aware of. Families might say, "Well, you looked really good. I didn't think anything was going on."

And so much of the losses that are experienced in metastatic disease, I think, too, can be silent and hidden. They may not necessarily be outwardly. So, I would like to open this up and start having discussion. I do see one comment here.

And I really do love if you can verbally ask, if that's possible, and with cameras [on]? Like Melissa said, if you're comfortable. I really want this to feel, like, as supportive and as intimate as possible. If it's not possible, that's okay, too. Certainly write it [in the chat], but I would love for us to be able to verbally...so, I'm going to look at [redacted]'s question right here:

"My question is about a recent development, because I will be starting with my fifth year with MBC, and this year, I've learned a lot about my personal medical journey. My sadness is that I am on my fifth line of treatment, and I am worrying that there are not many new medicine, infusion, chemo choices remaining for me. I'm only as good as my medicine. Great sadness and worry about this."

Yeah. So, I think there's some truth in that the disease, maybe, is only as good as the medicine, but I will say that I don't believe people are only as good as their medicine.

So, I think you're a person who is beyond any line of treatment, and you know, I have great empathy for this anxiety. It's just that it's kind of...people sometimes live in three-month increments, you know, whether it's between scans or between lab results or let's give it three months, let's give it six months. One of the things that may be helpful for you, [redacted], and others, is that, you know, there's so much living in the uncertainty and in the unknown, right? When you live with metastatic disease.

One of the things that I have found to be very true, whether it's about cancer, whether it's about something else, whatever we worry about, is that our unknown will become our known eventually, and when we get to that known, whether it's a new treatment, a new protocol, a new job, whatever it is, there will be a team of people that will help us through that. You are currently...and I will sometimes say to people...like, I was working with a gentleman who was in his second year of pancreatic cancer.

And I said, "What if I told you four years ago that you were going to be diagnosed with pancreatic cancer? What would you say?" And he said, "I would have probably said there's no way I could do that. I couldn't tolerate it. I'd be so scared." And I said, "Isn't that interesting, because you are. You are tolerating it. You are navigating it, and you are integrating what you're learning." And I think, at some level, we have to remind ourselves that living in the future is very anxiety-provoking, and living in the past is very depressing.

But [redacted], when you get to the time that you're most fearful of, if that time comes in six months, in a year, in three years, you won't be alone navigating that. You won't be alone navigating that time. And I can understand why that feels scary, because I know that each time we go down on the treatment line, we feel like it's less and less hopeful. Sometimes that's true. Sometimes that's not, as things are being discovered and released.

But I think what sometimes causes us the most fear of the unknown, and that uncertainty is that, all of a sudden, we're going to be abandoned and we're going to be dropped, and no one's going to be around for us. No one's going to be here. Where's my medical team going to be? I think coming up with a mantra that keeps you in this moment right now.

But I have to say, I think people are much more than their treatment. I think maybe the cancer is as good as the treatment, but I...And I don't know you, [redacted], but I can see your darling face. I don't know you, but I can see you. I bet you're so much more than your treatment. And I bet your person of who you are in your soul is much greater and more beautiful than any oral, IV, clinical treatment.

I think that's the other thing, and I see "loss of self" on here that [redacted] said. That, I hear a lot. We have to redefine who we are, or we have to remember who we are. You can get really lost in your, you know, tumor marker of this, your lungs are this. You're this, this, this, and this, but who are you?

I was doing a talk this week earlier, and there was a panel on there, and a woman who's living with metastatic breast cancer, it was so beautiful how she introduced herself. She did not start off with...she started off with her name. She did not follow by the fact that was triple positive. She followed with, she's a mother of a 4-year-old. She loves to cook. She had all these descriptors, and then she got to breast cancer. And I remember profoundly calling that out with her and saying I really appreciated that, because we have to remember who we are, and I think that's so important in grief and in loss.

We can forget that. We really can. So, I would want and encourage all of you today to develop some kind of mantra that keeps you right here in this moment right now, and when you find yourself going to the what-ifs, come back to the what is. So, I hope that was helpful.

Other questions and comments? Feel free to take yourself off mute, too.

Female Speaker #1: I'd be happy for more tips on how to get from that what if to the what is, the living day to day with positive outlook. I find it really hard that I can't ride my bike anymore. I can't go for long walks, but I haven't gotten past that yet, and it's been two years. Well, not quite. Year and a half since diagnosis, but I find it very, very frustrating.

Kelly Grosklags: Because it is. Because it is, and each day, when you wake up and you still can't ride your bike, it doesn't matter if it's been five years or 10 years. It's still so hard, [redacted], and I'm sorry, and you know, the thing is, is we keep getting told, make sure you exercise, make sure you do all this, make sure you do all that, and it's like, you know, who's writing these articles? So, it's frustrating.

One of the things that I really encourage, and you just did it beautifully, [redacted], is I want you guys to be able to state, somehow, what you are struggling with. What is hard? Whether you say it out loud, whether you write it in a journal, whether you talk to your doctor, but the problem is, is not enough of us are trying to just say out loud what we're having a hard time with. And the thing is about people listening, we can't fix it, but we certainly can listen and provide you with safe space.

I think one of the other things that's really important is to be really kind and gentle with yourself, because sometimes people will say, "I can't do this. I can't do that", and then they'll follow it up with, "If I was only doing something different, maybe I could. Am I doing something wrong?" And I'm like, no, nobody's doing anything wrong.

Now, I am not a positive toxicity person. I don't prescribe to: If you just do this, you're going to feel that. I'm sorry. If people like that, go for it, but I find it to be kind of shaming. Well, if you just think positively, it will be okay. That's not true, because I know a lot of people that've thought positively their whole life and it's not okay. However, there's space for both your grief and gratitude for what you can continue to do. It's not either/or. It's not either, "I can't ride my bike, therefore, it's over." It's, "Right now, I am really sad that I can't [ride] my bike and go for long walks. I'm really sad about that. And yes, I'm still grateful that I can get up in the morning and do whatever."

And let the two dance together for a while, and see how that feels. You know, maybe you can't walk as far as you used to, but maybe you can walk. I'm sure many of you have heard the phrase, and then a follow-up with, "Well, at least..." I don't like those words because they immediately diminish. So, I work a lot in the grief space, and people will say, "Well, at least you're young enough to get married. Well, at least you can have another baby. Well, at least you didn't lose your hair....

"Well, at least...blah, blah, blah, blah, blah." I don't like it. So, I don't ever want to diminish, but I do want to highlight that there's always space for really acknowledging what we lose and what we grieve, as well as being gentle about ourselves, about what we continue to do. And you know, if you're a bike rider and you can't ride your bike, the reality is that's a huge loss. It doesn't matter if you can walk to the mailbox or do whatever. I just want to acknowledge it's a huge loss. And that has been taken from you. Not because you don't have the desire. It's because it's been taken.

But the what-is is coming back and paying attention to senses. What am I hearing? What am I seeing? What am I noticing? All too often, we are not doing enough body scanning where we're noticing our shoulders, dropping them. Is our tongue on the top of our mouth? Likely. Dropping that. Yeah. [Redacted], I see that. Coming down the body, scanning it, and then where are our feet? Are they planted into the ground? If you're in bed, do you feel the bed on your back? Are you grounded in the now?

And then one more thing that's really important, bring something into the now that brings you comfort. Is it your cat? Is it a blanket? Is it a smell? Do you really love the smell of oranges? Have that around. Do you love the sight of birds? Have pictures of birds. Turn on TV of birds. Watch YouTube videos of birds. But we have to come back to now, because our brain is able to have pleasure moments in those senses that bring us pleasure and ground us.

And for a moment, that is putting into us all these beautiful chemicals, et cetera. The brain doesn't necessarily look at that bird and go, "Oh, that's a beautiful bird," and knows how much it brings you...and then says, "But you still can't ride your bike." It's this thing of staying in the thing that brings us comfort. For some people, it's grandchildren. For some people, it's comfortable slippers. Surround yourself with the things that bring you comfort, and that's the what-is.

But we do not utilize the senses enough, the hearing, the comforting voices, the beautiful sounds, the beautiful sights. But you know, after answering all that, still, at the end of the day, [redacted], I'm so sorry that you're not able to ride your bike. I really am. And how frustrating it must feel to hear, "Just move your body and exercise. That's really good for you." Thank you for being brave enough to say something.

Who else would like to comment? And you have to take yourself off mute. [Redacted].

Female Speaker #2: I think that sometimes when, you know, we're dealing with breast cancer, we don't want to be in the moment, and sometimes the moment is hard. So, we want to tap out, and I think that, sometimes, it's good to escape, because the moment's too hard. And I think the tricks, the old bag of tricks, of what we're supposed to follow, like, it sometimes is just out the window with breast cancer. Because sometimes we want to look into the future where, you know, we might see somebody else in our support group that's doing well, and that gives us hope, or we might want to look to the future of a different medication that works better or you know, improvement.

So, I think that in the moment sometimes is too painful. And I think that hope...I have mixed feelings about hope, but sometimes, if we leave the moment and think about the future, we get a little bit more hope. Because I think that there's just so many opposing feelings and contrasting feelings in breast cancer that we all experience. And I think that's the challenge. To kind of, like, figure a way, and it's always changing and like, holding both. Like, for example, our relationship with our medications. We don't want to go on them, and we're scared. We think of all the side effects. We hate the side effects.

But then, if we need to take a break for whatever side effect, then we're scared, because we're like, we become believing that the medication is going to help us, and so, we have all these conflicting relationships with things. Like being in the moment is hard sometimes, so we want to watch Netflix, or you know, we want to tap out sometimes because it feels better. And I think that's the challenge. It's like you want to sometimes appear healthy, but then you want people to know what you're going through.

And so, it's like this idea of how the heck do you hold all these opposing things? You know, maybe you want to show up to your doctor's with lipstick and a nice sweater, but at the same time, you want them...you want to be able to describe all you're going through. So, I think that that is, like, what's so hard for us, and even being in these support groups and forming relationships and getting to know people, like, you know, sometimes my friends will be like, well, why would you want to expose yourself to that?

Because of this...like, we can see what might happen to us, which is, you know, the friends that we have on the support groups die. Or we can see, like, the whole range of things. So, I think that is the challenge and also the grief, that everything's thrown up in the air, and it's like we have to hold all these contrasting feelings, and it's very challenging. And it's changing all the time, and so, it's hard to come up with a bag of tricks that works.

Kelly Grosklags: Well, [redacted], I think you said it so beautifully, and you know, another thing that I have found is sometimes what works one day doesn't the next, and I think that that...that can be such a loss in and of itself. Like, "Yesterday, this made me feel good. Why isn't this making me feel good?"

I totally understand what you mean about the moment is hard. And when I work with trauma, people in trauma who have witnessed suicides or whatever. The moment...they don't want to live in the moment because the moment is so difficult. So, what we do is we try to make the moment comfortable, like I was talking about. And if you're thinking about the future and it brings you hope, go there. 100 percent, go there. Because that, ultimately, is impacting your moment.

You're sitting in this moment at noon. You're thinking about next week or next year, planning a vacation, and/or this possible clinical trial that you're going to be...and it's bringing you hope and feelings of support and love. Absolutely, go there.

I'm more talking about the thinking forward and not having the hope and all that, and of course, that's important. We want to acknowledge that. But that's where we have to...because we haven't arrived at that moment yet, and so, we don't know what this clinical trial's going to be. We don't know if the treatment's going to fail the person or not.

You know, and by the way, people don't fail treatments. Treatments fail people. So, I'm very clear on that when I educate physicians and healthcare providers. Don't ever say, "Unfortunately, you know, the patient has failed this treatment." I hate that language, and it's not true. The patient's done everything in their power to make this go, and so, I'm 100 percent with you. If you're thinking about the future...and sometimes I'll have people actually do that. I'll have people visualize.

I'll have people visualize and almost try to, like, manifest...like, what do you want that...because they'll say, "I don't even know if I'm going to be here next week or next year for my twins when they graduate from high school." Well, let's sit with that, and let's manifest that, because we haven't gotten there yet. So, we don't know, but if it makes you feel good to imagine them walking across the stage and that you're there for that, absolutely, [redacted]. I mean, absolutely. And you're right. The moment can be really scary, and a lot of people can almost dissociate.

I was interviewed once about do I think that being diagnosed with cancer is like PTSD, and my answer was yes. Especially with metastatic, because you are constantly having to walk out onto the field of where you have to deal with this. And so, it can bring on PTSD. PTSD is not just about war. It's not just about people getting in car accidents. It's not just people who have been raped. It is about that, but it's anything that's happened to you that has made you almost feel hyper vigilant or scared or your safety is threatened. And I would say metastatic breast cancer falls under that line. Absolutely. And any feeling can make people anxious, feelings in the body.

You know, the one thing I've noticed, women in particular who have metastatic breast cancer, know their bodies pretty well and know when things are off, but sometimes anxiety can make us misread things. Like, the symptom is real, but it may not be related to the breast cancer. However, it can mimic that, and I think that that becomes almost part of PTSD, that kind of hypervigilance of what is going on in the body? What is going on in the body?

Is it typical for most people with MBC to find that your body feels different day-in...yes. Well, let me say this. From what I've been told, yes. I don't know that firsthand. I think the majority of you can answer that question much better from [redacted]. And I also like what [redacted] said, "Minute by minute." You know, I've had people be so disappointed because they've woken up in the morning and felt really okay, and they've got a big event they want to go to at night, and they can't go.

So, that was very hard for them because, you know, you take for granted that if you wake up in the morning and you feel good, you're not thinking about, well, will I still feel good tonight, if you don't have metastatic disease or a chronic disease. This can also apply to other diseases. So, I would say absolutely, and do the things that makes your body feel the best in the moment. Is it a bath? What can you do with your energy? Again, I am very into things that are sensing because I...

You know, a soft blanket. I see that [redacted]'s holding something soft, and I think that's so darling. And I think those are important. Things that bring comfort. A hot mug of tea or coffee. But what brings you comfort? I would love other people to talk about that, because you are the ones living with it. So, is that fair to say that your body feels different day by day, hour by hour? Does anybody want...[redacted], would you mind saying something, because I know you're shaking your head?

Female Speaker #3: Yeah. I...that exactly hit home, because sometimes I'll wake up in the morning, and I'm like, "Oh, this is a good day. I feel great." You know, I get up and I do things, and around one in the afternoon, all I want to do is go back to bed, you know. And you know, I just sort of drag myself through the rest of the day. And yeah, I mean, it's just you feel ripped off because you were expecting to have this energetic day, and it didn't happen the way you wanted. So, yeah.

Kelly Grosklags: That's quite a profound and very true statement. You feel ripped off. And how does your family -- and anyone can answer this, but [redacted], I just want to put you on the spot -- your family or your friends, do you feel pressure to have good days?

Female Speaker #3: No, well, I think, right at this point in my life, I feel like everybody around me understands pretty well. I mean, they're very flexible as far as what I want to do, and if I need to scale back on our plans, they're okay with that. So, I feel really lucky that way. I do have a friend that could not understand why I was involved in that...this support group. Because I told...I was like, "Oh, I'm so sad today because two women in our group died," and she's like, "Is that helpful? How is that helpful to you?"

And she goes, "I would think a little denial would be helpful." And I was like, "You don't get it," you know, and I got mad at her, and I was like, "You don't understand, you know? It's not always...people don't die every week. You know, it's just this one time, and I'm allowed to feel sad." And she kind of backpedaled, and she said, "Oh, you're right. I don't get to have an opinion on this," is what she said. And you know, she's a good friend, but she just didn't understand. Yeah. Anyway, that's a little bit of a segue, but...

Kelly Grosklags: Well, no, I think that it sounds like your friends and [female speaker #2]'s friends could hang out.

Female Speaker #3: Yeah. Right. Right.

Kelly Grosklags: Probably a lot of friends. You know, I've heard that when my patients would come in, and they said...they'd say, "I'm getting a lot of flak from my friends that don't have metastatic cancer. They think it's silly I go to this group every night...or every week. They think it's silly that I've gotten close to these people, knowing that I might lose them." And in a way, though, it's, you know, yes, they have metastatic breast --

I had a patient, Judy Erdahl, who lived with metastatic breast cancer and is just beautiful. And she said, you know, "I know everybody says you could get hit by a bus tomorrow." She said, "I happened to just be laying in the yellow line in the middle of the road," you know, kind of thing, and she just...she had this humor about it. Because her friends would say to her, "Well, I could get hit by a bus," you know, blah, blah, blah, and she said, "Well, it's not quite the same." I mean, that's true, but...

I think, also, when it comes to relationships, there's a lot that is gained in these metastatic relationships that are made. There's a lot that is gained. And yes, love is risky, and relationships are risky. But from what I've seen, I don't know. It's priceless to be able to send somebody a message on Messenger or to sit in a group with people that are across the globe and have them acknowledge you. I just...personally, I do think if you need to take a break sometimes, that's absolutely okay, and people sometimes have to. But I would never say, as a rule of thumb, don't attend these, because what I've seen from the psychological benefits of these groups, it would be hard-pressed to say they're...you know, "Stay away." Maybe the one...you're so lucky, [redacted], that you have people that understand, but...

Female Speaker #3: I have really good friends. Constantly thankful for them.

Kelly Grosklags: [Redacted], did you want to say...

Female Speaker #4: Yeah, I do. I find this group, it's a must for me for the week. I think it's so important to listen to...mainly I think, for me, it's to listen to what people are going through and certainly, to share your own story is important. I think my future is every three months. So, each time I go get scans, I see what's happening, and it hasn't been great these four years. I mean, I keep progressing, and then I go back a little bit, and I progress.

But I have to say, this...or really, since I was diagnosed the second time with breast cancer, since I moved to Iowa to be near my daughter, think I've been the happiest in my life in terms of recognizing my ability to live with this disease. I think I've done pretty good. I've been very lucky with side effects. So, I haven't been very sick for most of the time I've been on chemos and whatever else. But I thought...just yesterday, I was thinking that I couldn't ask for anything more from my family and my friends and the life that's around me.

So, I'm glad we're here, and I'm glad we're talking about this, and I just love everybody on this page because we're all together, and...but we're separate. We do things differently, but somehow, we all connect to the same fucking piece of shit that we're stuck with, which is metastatic breast cancer. I'm saying that on behalf of [redacted], who loves to use the F-word. Thank you for that. Thank you for you being here. It's very interesting.

Kelly Grosklags: Thank you for sharing. I'm so happy that you're happy right now. And you know, what a profound thing you just said about learning how to live with this fucking disease, so to speak, right? You know, it is that...and it depends on where you're at from being diagnosed in all this, but it's ever-changing. I mean, some days, people feel like, yeah, I've got this, and some days, they don't, and that's okay, and what we need is the people that are going to ride those waves with us.

The metaphor I like to use is, whether it's...whatever you're experiencing. So, we'll say metastatic breast cancer is like an ocean, and in that is waves, and they're big, and they're huge, and sometimes, you know, they're bigger than we are, but we also know, in waves, if we don't just kind of almost surrender and let them take us to where we're going, if we go backwards and try to get off, it can be harder. But the waves will always subside, and the most important thing I want you to think about is who is on your shore? Who's on your shore waiting to hold you and support you?

Sometimes it's very unexpected people, and I never diminish when people say to me, "I'm very close to my neighbor." Okay, that's a very important person. Or their doctor or their nurse practitioner or someone in their group or their fifth cousin. You know, but who do you have on your shore? And that's who you stay very, very finitely focused on when you're in these waves that feel so unsurmountable.

And I can speak from a grief standpoint. I had a very tragic loss when I was 11. It was my mother, and there have been times these waves feel overwhelming to me, and I have to stay very focused. For some people, it's faith. For some people, it's the group. Whatever it may be, but what is your shore, and stay focused on that, and go to that, and know that you're going to be led there, and I think that that's what's really important.

So, does anybody in the group currently have younger children in the house? I'm just wondering if anybody has kids in the house? [Redacted]?

Female Speaker #5: I don't, and that's the loss for me. That's the one thing that I just have to live with now. But I had early-stage breast cancer, and I just turned 30, and I reached a massive milestone recently and finally turned 40. I never thought I'd reach 40, but here I am.

Kelly Grosklags: Lovely.

Female Speaker #5: So, so happy, you know, and then another milestone. I had a 10-year anniversary the other day with my husband. So, lots of massive milestones. So, I am humbly grateful for it and honored, and at the same time, it's a big loss that, you know, I've always wanted to have children. I used to teach, so I did get to experience looking after children, I suppose.

But you know, I feel like a very big part of what it is to be a human being, a woman in particular, is to have an offspring, to breastfeed. Not my breasts tried to kill me, you know? So, it's something that comes up a lot, and I'm still able to live happily, and again, it's there. That pain is there. It's real. People...not everyone can understand it. Some people ask you if I have kids. So, it's a very loaded issue. So, I thought I'd raise my hand because I do look young, and I am young, but cannot have kids. Yeah.

Kelly Grosklags: Well, the reason I was asking if anyone has kids, because that's a whole other layer that people want to talk about. You not having children and not being able to biologically have children, I guess, is the thing, is a huge loss. And I think that that pain of the loss will probably always kind of be there subtly, even if you're, as you say, living a happy life. And I think that's what's important, is to remember there's space in our lives for all of it. Like, that grief can exist and that sadness, all while you're living this happy life, you know?

And so, we don't have to pick one or the other emotion. [Redacted], you get to have that, and I would imagine there's times it comes up stronger for you, you know? And I just hope you have people that can hold that space for you, and sometimes I really encourage people, if they're women, to really mother yourself, and if they're fathers, to really father themselves, whatever that may be. But to be really gentle around that. Not have to explain it away.

You know, and when people say, "Well, aren't you glad you're living?" You know, again, I don't prescribe to that kind of stuff. I think there's...the reality is there's room for all of it. Yeah, you're glad you're living. Yeah, you're glad you had 10 years with your husband, and you still get to be sad. So, thank you for sharing that with us.

Female Speaker #5: Yeah, thank you. I definitely believe in dialectics that can...and negating things can coexist.

Kelly Grosklags: Oh, in the… being diagnosed at 30, I mean, looked probably very different than your friends who were at 30.

Female Speaker #5: Yeah. Everyone was still partying and drinking, you know?

Kelly Grosklags: Exactly. Thank you for sharing that. [Redacted], you had your hand up?

Female Speaker #6: I do, and perhaps this is a unique experience for me, but I had a Guardant360 test, and for three and a half days, I read it wrong, and I read that the spot on my lung was lung cancer. I was so angry those days. I thought, "Isn't metastatic breast cancer enough?" You know, and it took me three days to figure out that was their example. I was not their example. That was their example of potential treatments. That my...the spot on my lung was just breast cancer spreading. So, you know, it's kind of like I've accepted the breast cancer, but adding something new was just beyond my ability to roll with.

Kelly Grosklags: I could completely understand why. I don't sit here at all and go, "What?" That makes complete sense to me. You know, there's something about the breast cancer being the known, as I was talking about. It's your known, and the thought of having another primary would be very hard. You know, people will say that not even with other cancers.

But if they have metastatic breast cancer and they find that their partner is having an affair or they lose their job or they're losing their health insurance, whatever it may be. It's like, one more thing added on almost feels insurmountable, and that's where we have to go back again to, okay, that we're in a really big wave right now. Who's on our shore to help us? And you know, did the three days have any purpose? Anger that needed to get worked out and come to the surface? It's hard to know. Probably really uncomfortable three days, and a lot of fear.

Female Speaker #6: Not fear, just anger. It was kind of like, "Enough already." I also have Crohn's disease. So, I thought, you know, "Enough already."

Kelly Grosklags: What happened that you figured out it wasn't...how did you...

Female Speaker #6: Well, I looked on their website again, and I saw that exact example on their screen. I thought, "Whoa, wait a minute." Then I thought, "I'm looking at this wrong."

Kelly Grosklags: Oh my gosh, [redacted], I'm so...oh, gosh.

Female Speaker #6: Then I had a huge relief that I don't have lung cancer. I just have breast cancer in my lung. So, it was a cause for celebration. Whoa.

Kelly Grosklags: Whoa is right. And you know, I don't know, it'd be understandable if you were angry that the breast cancer's in your lung, too. So, you know, I just have to say, again, anger...you know, and what I know about anger, as a therapist, is it's so legit, obviously, but what I also know about if we can...because sometimes medical people don't do well with angry patients. They tend to "ahahahah," you know, because we personalize it. So, what I say to them is, "Why don't you sit with them and ask them what they're the most scared of, because, ultimately, under that anger is fear, and ultimately, under that is grief. And if we can get to that, then we can work with it," you know, but why...I always say to medical..."Why wouldn't somebody be angry," you know?

And sometimes it is personal. Sometimes the provider said they were going to do something and they didn't follow through. But the person being angry is about their experience with this disease, and so, we need to join people in that. I'm really sorry you had to spend three days being angry. I bet that was such a relief when you looked on their website. Something intuitively told you to go to that. So, how many people did you have to call and tell them you didn't have lung cancer?

Female Speaker #6: Well, I do the Caring Bridge, so I announced it in my Caring Bridge, but I saw the doctor on Wednesday. So, Wednesday, I did a Caring Bridge, and the last thing I said, "By the way, I am so happy to say I was wrong!"

Kelly Grosklags: Thank you for sharing that, and I am so glad you don't have lung cancer.

Female Speaker #6: Right. Me too.

Kelly Grosklags: [Redacted], did you want to say something?

Female Speaker #7: Yes. It's related somewhat to what [female speaker #6] was saying. The thing that is very difficult for me is that my previous life was autonomous. But now, my life is centered on the next scan, the treatment schedule, the next test schedule, the...you know, all of those things that, you know, you want to just kind of say, "Well, why does it matter?" You know, really. I mean, really. I'm just going to go when I go and why...

Like, in the beginning, when I was first diagnosed, I just said, "Well, you know, let's just let it...let life take its course," you know? "Let whatever happens happen." And my doctors just looked at me, like, with this...there were four of them, you know, just saying, "What? You're going to not get treatment? You know, we're at the mercy of the medications. We're at the mercy of the next treatment. We're at the mercy of, you know, what the research says."

And it's not true, you know? I know that's not true, because, every day, I am living a life that I choose so many things to do, you know? To live, to think, all of those things. So, that, to me, is...it just sometimes gets me, you know, bleary-eyed and tired of...you know, so, I just wanted to share that. You know, that, "What is the next PET scan going to show?" You know, "What is the next..." like, "Why would I bother taken a Guardant test, because it might show something new? Why would I bother doing a brain MRI? Because it might show that there's something up there when I just know there's space up there, you know?" Things like that. So, that's part of my...you know, how to be...I love how you're saying you can be in two...you can leave space for the sadness as well as enjoy the moment at the same time. I just am grateful for that. Thank you.

Kelly Grosklags: [Redacted], that was so beautifully said. Thank you, and you know, I just would encourage you to keep showing up authentically, like you're doing. You know, and even if it doesn't go with the...sometimes we just have to decide we're going to make our own decision for a moment, and you know, if they say, "You really need to do this by next week." It's like, "Okay, if I want to." I mean, I can understand where you get into that sometimes.

And you know, autonomy looks different, but it isn't 100 percent lost. And I think we have to remember that. It looks different. You know, I don't prescribe, also...here, you're learning all these things that I'm a kind of rebel against, but I don't...and again, I work both in oncology and in grief. I don't get into the “new normal” language, because...and this doesn't feel normal. This wouldn't feel normal, and somebody losing a sibling to suicide is not a normal thing.

So, what I like to talk about is the difference. We're living in the different. This is our different. So, we're navigating our different. But nothing about what I've learned from people about metastatic breast cancer would feel like a normal, and I know some people say, "This is my new normal," and I just...I don't know, there's all this...what is normal anyways? I don't even know what it is. And so, I just say you're living in a different, and it looks different. Where can you embrace autonomy still in your life, if that was important for you before?

We also lose privacy when we're a patient, you know? I mean, I know there's HIPAA laws, but I'm sorry, anybody that's ever gone to a...I mean, there's just...you just get asked anything, and you're just supposed to tell anything. I mean, it's just a very transparent experience that sometimes can feel very unsettling for some people, you know? So, [redacted], keep creating space for both of it, please. All of us. Please create space for your sadness and your hope and your joy and your autonomy, and let it dance.

I talk about this in my book, the concept of both/and because it's life-changing, really, versus either/or. So many people are going around living their life either/or, and there's all this pressure. "Either today we're hopeful, or we're not." No. "In the moment, I don't feel hopeful, but I also maybe, in the next hour, will." I don't know. It's not...it's just, you know, just for right now, I need to be, capital B-E, with what is. I hope all of you truly can be with what is.

"I heard an interesting phrase today. Metastatic breast cancer thriver."

Yeah, you know, the one thing I've learned is every...and if "new normal" works for you, truly, say it. I just have felt it's like...especially in the grief space. People are like, "This is not normal just to live like this. I don't...to have this kind of pain doesn't...I don't want this to be...why is this normal?" So, if that word kind of has grated against you, maybe say, "This is my different." This is just my different from what is.

We've got about 10 minutes. If you want to talk or say something, just unmute yourself, and just jump right in.

Female Speaker #8: I want to say that I just turned 66, and I got my diagnosis three months after retiring and moving to a new home. What MBC has done for me, is it helps me appreciate the life I have. I was given 10 years, but every year, "I just say, oh, I've got 10 more years, so...," because, if I don't, I only have five years left, which would be gross.

I have a daughter I wasn't as close to, and now we're closer because we know Mom's not going to be around forever, and we appreciate...I can't explain how she's shifted. She appreciates a lot of qualities, you know, and I'm appreciating her and letting her know, because I won't always be able to be there for her. And I had her late in life. So, I know I wouldn't be around forever, but still, something switched with us. My husband and I fell more in love because we won't be together as long as we thought. And friends and the beauty where I moved to, and I know it's not like I'm, you know, Pollyanna, but to appreciate these things and to have them is a wonder.

Kelly Grosklags: Oh, [redacted], I love that, and what that brings me to is this concept I also talk about, healing versus curing. So, we know that metastatic breast cancer isn't curable right now, and yet there is so many options to still heal. And sometimes that looks like relationships. Sometimes that looks like people might not spend...or might not save all their money and spend it on a massage every week because they want to, or they get stronger in their faith, or they heal estranged relationships, or they learn to say, "I love you," or they learn to say, "Please forgive me."

Healing is always possible. In fact, I've seen healing up to the last moment of life. So, don't ever let anybody take away the healing opportunities from you, no matter what your disease looks like, because we can all heal. Sometimes it's even healing within the self, of loving the self. Maybe we haven't loved ourselves or appreciated who we are our entire life.

It's remarkable to me, because when you said that, I immediately got pissed off that you had to deal with this right after retirement. And we hear that quite often, but I will say that, right away, you followed up with, "And yet, I'm so grateful for the life I do have." And that's remarkable to me, [redacted], that you're able to do that, because I...I think a lot of people would be very focused on. "Why did it happen," but you're not. You're so beautifully present in the moment, and it's remarkable to me, is what I'll say.

Female Speaker #9: I just wanted to expand on what [female speaker #4] had said about the support groups. I've been involved for, like, I guess almost two and a half years now, and I really look forward to it every week.

Kelly, I'm one of those people who's always been very positive from the very beginning. My username is GoingToBeatThis, and that's what I said the minute I found out that it was metastatic.

I look at it like you said. It's not curable at this point, but it's controllable, and I plan to live a long time, and yeah, I was diagnosed at 68, and so, now I'm in my 70s. But I am responding really well, and I sometimes feel, on the support groups, that, when people aren't doing so well, I feel a little guilty that I do feel as well as I do. But I just wanted to say, this week, a few things happened. A couple of people actually thanked me for some information that I had given, and that made me feel really good, and one person who was on...

I think she may still be on here, [redacted]. I helped her get the foundation grant for her Verzenio, and she wanted to send me flowers, and I told her that I really appreciated that, but if she really wanted to do something, to give a donation to Breastcancer.org in my honor. And I just wanted to thank you in front of everybody because I so appreciated her doing that. But I like the group because, one, I can lend my positivity to people when they're down, but also, I just learn so much from people.

You know, things that I might not be aware of that have helped me of things that I can use, and I'm one who doesn't believe in medications. I was never on any prescription drugs before I was diagnosed. So, this is kind of new to me, but I still do a lot of supplements and natural things, and I'm just very thankful for the group, and I feel that something's missing if I do miss calling in every week.

Kelly Grosklags: You have such a beautiful face. Like, you have this...you're so...I don't know. I've been watching...you've just got, like, this smile, and I don't know. You're got this presence about you that I just want you to know, and I've watched you a couple times on this call, and I know it's my first time, to my knowledge, meeting you. You just...you have a gentle face.

And what I want to say to you is that when you're doing well and someone else isn't doing well, you still show up for that because you bring hope that maybe they'll be doing well another time. And you know, people will say that all the time. That it's survivor's kind of guilt in a way.

That people will say, "I feel bad that they were diagnosed, you know, two years after, and they died, and you know, I'm living and doing well." I think, again, that comes with the space. We could have empathy for that. But the only time we really should feel guilty about anything is when we've intentionally done something. You haven't intentionally hurt this person by doing well. So, I think it's important to remember that you show up in these groups and that, when people are doing well, you bring hope to those that aren't, and I think that that's the important part.

You know, it's that scale of sometimes people are going to be down, and sometimes they're going to be up, and we sometimes take turns, but please keep showing up, because people need to remember that people can do okay some days. I mean, that's a really important thing. I also, on the other hand...because when you're the one that's always doing okay, it's a lot of pressure, and you still get to show up and not be okay.

Female Speaker #9: And there's been some times that I've had some things, and the group has been very supportive and very helpful with that.

Kelly Grosklags: Just because sometimes when you're the, you know, cheerleader and everybody sees you that way, you don't always feel like you can show up and also have a bad day, but you can. And that's the one thing I've said. I mean, I have had so many people say they wish their cancer had the support that metastatic breast cancer has in terms of their groups. They just...they don't all have that, and it's such a...it's so unique in so many ways. That you truly can be just so close to somebody you've never met, I mean, it's...

Melissa, is everyone on this call today from the United States? I know, last time, there were people from all over.

Melissa Jenkins: No, we have a variety. Canada is represented, United States, Nigeria.

Kelly Grosklags: Wonderful.

Melissa Jenkins: I'm sorry -- Nairobi, excuse me. Kenya.

Kelly Grosklags: The reason I bring that up is because some countries...you know, it's so great that we have Breastcancer.org, because some countries, I have found, don't have the kind of support that other countries have.

Melissa Jenkins: [Redacted] joins us weekly, [redacted] from Nairobi. I don't know if you're still there, [redacted].

Female Speaker #10: Hi, I'm here.

Kelly Grosklags: Hi, [redacted].

Female Speaker #10: Hi.

Kelly Grosklags: What time is it there, and what day is it?

Female Speaker #10: This is...we're in Friday. It's 8 p.m. in the night.

Kelly Grosklags: Okay. Not too bad. Okay.

Female Speaker #10: No. Yeah.

Kelly Grosklags: Sometimes, when I've done talks and Australia's been on the phone, it's like middle of the night for them the next day, and I was like, "Now that's dedication!" But we're glad you're here, [redacted].

Female Speaker #10: Thank you. I'm benefitting so much. Thank you so much for all the information you've shared with us. I appreciate it.

Kelly Grosklags: You're so welcome.

Female Speaker #2: I just wanted to say, you know, the title of this was "The Losses." I would say the group is such a gain, such a clear gain, and it's just like the conversations that we have and just learning and listening, learning from one another, grieving with one another, learning how we live and die with the disease, it's such a gift and the opposite of loss. And so, you know, there's many things that it takes from us, but this is such a gain, and I'm about to be 55, and my first breast cancer was when I was 33. And this was way pre-Zoom, and so, you have this...now is just such a gift, and it's a real gain.

Kelly Grosklags: [Redacted], I'm so happy to hear that. Again, I think that's why, you know, we talk about space for both. So, if you get nothing else out of this, please get that there's room for both of these experiences, and I'm real grateful to all of you, and I would encourage you guys to do something today to honor Metastatic Breast Cancer Day, whether that's light a candle. I know several of the communities are doing Light Up live, lighting up bridges, lighting up different things.

And so, whatever you need to do today, and it's not saying you're glad you have this. It's saying, "I'm honoring the experience and honoring the experience in how I show up every day," and like [redacted] just said, "I'm honoring the people that support me through this," because I think that that...

And at the same time, this might be a day for you to reflect on, also, what you grieve, and so...but it's an important day, and I hope your family and friends are aware of what the day is and that they're embracing you with softness and love. And so, my hope for each one of you today is that, when you go to bed tonight...and for [redacted], that's going to be soon, but when you go to bed tonight, that you're going to feel heard and loved and have moments of hope today.

Melissa Jenkins: Thank you for being here, Kelly. As always, we just...we love having you.

Kelly Grosklags: Oh, I love being with you guys. So, thank you.

Melissa Jenkins: Yeah. Thanks, everybody, for showing up today, and wish you a good weekend, and Kelly, again, you want to say your final goodbye here for the group?

Kelly Grosklags: Yes, and so, thank you all, and truly, come find me over on social media at Conversations With Kelly or @SeeMyGrief on Instagram. A lot of interaction and certainly lots of people living with metastatic breast cancer that are on there.

So, so much love for everybody, and be kind to you, and we'll see you again in the future, I hope, Melissa. So, thanks for the honor of coming.

Thank you for listening to The Breastcancer.org Podcast. Please subscribe on iTunes or whatever you listen to 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 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.