[00:00:00] Adam Walker: From Susan G. Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
This is Real Talk, a new podcast series where we’re going to break down the stigmas and feelings of embarrassment and talk openly and honestly about just how difficult breast cancer can be – from diagnosis, to treatment, to living with metastatic breast cancer, to life after treatment ends.
Today I’m joined by three women living with metastatic breast cancer. It is my pleasure to welcome Pam Kohl, who along with Ann Camden and Katie Mackin, are getting real about the holidays and their thoughts and feelings this time of year.
[00:00:48] Pam Kohl: Thank you so much, and thank you. Welcome, Katie and Ann. I’m Pam Kohl, and in January of this year of 2023. I will have been living with metastatic breast cancer for six years. As we all know it’s a hard diagnosis to have. Metastatic breast cancer is when the breast cancer leaves the breast and goes somewhere else in the body, and it is not curable. And we live every day knowing that we will be in treatment and that this disease will shorten our lives.
I live in Raleigh, North Carolina, and I have a husband and two kids. My two kids Max who’s 32, and Sophie, who’s 29, and they live about 30 minutes. They both live in Durham 30 minutes away. So, they’re no longer living at home. And I thought it would be really great if Kate, Katie and Ann, if y’all would just give us a breakdown of your story, your MBC story, and who’s living with you now, and how many kids do you have and your situation and then we’ll come back to how it has been changed by living with metastatic breast cancer. Katie, why don’t you start?
[00:02:08] Katie Mackin: Hey, sure. Thank you for having us by the way. I appreciate being invited to join you. I am currently 38. I’ve been living in Raleigh. I was diagnosed when I was 34. In January of 2018, I had de novo metastatic HER-2 positive, mildly estrogen positive disease, progesterone negative with mets to my spine.
That’s how it was found. De Novo means that I had no previous history of breast cancer. Mine did not recur from an earlier stage. It was stage four out of the gates when it was found. And actually we didn’t even find the lump until after I had a biopsy of one of my spine metastasis. And so then I underwent radiation of my spine and.
A reconstructive spine surgery and chemo and more radiation. And then since about August of 2018, I’ve been on a maintenance regimen that has been working for me. I have a five year old who at the time of diagnosis was about eight months old and following my spine surgery we. We’re learning to walk again around the same time.
Since then I have gotten back to a working full time. I’m an orthopedic pa and we still live in Raleigh and at home. There’s my five year old, my husband, and two dogs.
[00:03:41] Pam Kohl: Wow. Every time I hear you talk about being diagnosed at 34 De novo, it still takes my breath away. How terrifying that must have been. Ann, tell us a little bit about your situation, your story.
[00:03:58] Ann Camden: Sure. Thank you for having me. I’m really honored to be here and this is a a big topic in our house. So, I was diagnosed initially in 2009 as early stage and with DCIS and I made it six years and was diagnosed with Lobular and it was metastatic at that time.
So I’ve been living with it for just over six and a half years and just this year I was fortunate enough to see, I have twins, and see them both fly the coop. So one is about three hours away and one is about 12 hours away. So for the first time in my life, I really understand that song, you know, I just want you home for Christmas and that’s really important to me this year.
But, I’m in a very aggressive chemo regimen right now and have been all year, so I go every other week for some type of treatment and sometimes two treatments. So it’s been a hell of a year and I’m just looking forward to having it behind us.
[00:05:03] Pam Kohl: Yes. That’s so powerful in terms of trying to explain what our real life is like in terms of being in treatment for the rest of our lives.
And we’re so grateful to have the treatments, but the treatments are hard and like you, I. Was first diagnosed with early stage breast cancer and did everything I was supposed to do, radiation, endocrine therapy, and thought I was done. Everybody said, Oh, you’re cured. And then three years later was diagnosed with metastatic breast cancer, and I’ve been in treatment for six years and have been pretty lucky in that I’ve only moved to my second line of treatment in that I have remained relatively stable. And I say that, but I hope everybody who’s listening will understand us when we say, yes, we’re relatively stable, that means that we don’t have new tumors or that we don’t have grown tumors.
But that doesn’t mean that we feel well and struggle all, you know, regularly, because these treatments are extremely toxic. So I’m going to tell a little bit about what our traditions are and sort of my story around the holidays and then we’ll, we’re just going to have a conversation about that. So, we do Hanukkah and we do Christmas.
And as my daughter in kindergarten told her teacher, Well, in our house we do this much Hanukkah and this much Christmas and I thought that was exactly correct. That is how it goes, that we do eight nights of Hanukkah and then we do a little bit of Christmas because my husband is not Jewish. So our big thing that we’ve been doing for a long time, since the kids really were little is we invite these families over different nights, over Hanukkah.
And I do the full Hanukkah thing where I make my grandmother’s roasted chicken and I make the potato lattes. And we, I serve peppermint ice cream with hot fudge for dessert. And we have a different family, different nights. And then we also now, One night where Max brings his buddies and I do it for them, and then Sophie will bring her buddies and I’ll do it for them.
You know, Hanukah changes every year, so sometimes it’s really early in December and sometimes it’s later in December. This year it actually crosses Christmas and Christmas Eve. We have a special dinner, just us. And then in the morning it’s just us. And then we go our merry way. We, we although we typically will do that Jewish Christmas, which is in the afternoon, go to a movie and go have Chinese food because Chinese restaurants are open, and that’s called the Jewish Christmas.
And so I would say when I think about this and how the ho how this disease has impacted the holidays, you know, I thought about it and it’s really depends on where you are with your diagnosis. I think the first two years there was a melancholy just. Surrounding the holiday, we were trying to do everything, but you know, I was told that I had two to two and a half years to live, and so it just felt.
I mean, we would talk about it some, but there was definitely an edge to it and a melancholy around it. Now, six years out, we ha we have a lot more confidence, I guess, and we’re not dealing with the dread in the same way. And part of what I’ve learned is to really try to pace myself because. We all have to deal with fatigue in a big way.
And if I’m going to have Hanukkah and cook latkes five nights, you know, I better be pacing myself and understand, I try to not do them two nights in a row if I can. And I think that for me, part of it is wanting to make sure that my kid’s friends know what Hanukkah, what our traditions are. So that if my kids need their support later, their friends have been part of this.
And it’s also been really important to me that our adult friends of the family know how to do this so that if our kids need their support or that they can continue doing this without me if they need to, and that my kids have that kind of relationship with the adults that we spend so much time with.
And I don’t really think that I do anything more because of the, you know, try to make it even more memorable or anything less? I just want it to be who we are as a family in our traditions. I think that the kids, I think it may be just because they’re not teenagers anymore, but they are. More eager to help execute this.
Because I make homemade hot fudge sauce. And now Sophie’s willing to, I don’t think she’s doing it because she wants to know how to do it. I don’t think she would articulate that, but now she will help and Max will help. So let’s, I’ll stop there. And Anne, why don’t you talk a little bit about how living with MBC has had an impact.
[00:11:04] Ann Camden: Yeah, it’s a great question and I think mine was probably a little bit reversed when I was first diagnosed with metastatic, well, it was in the summer, and so by the winter, like I just kind of learned to live with it, and it was just like that creepy dark shadow that just followed me around and I just lived with it.
I didn’t really think that much about it, but. And my kids were in like sixth, seventh grade, that awkward middle school. But we, and we travel a lot on Christmas and we used to, so we’ve done Christmas in at the beach, we’ve done it in the mountains. We’ve gone to Indiana, we’ve gone to Montana. So one of the traditions we have is no matter where we are, we always go to Christmas Eve Mass, which we’re not Catholic, but I grew up Catholic.
We can always find, I mean, we’ve driven an hour in a snowstorm to go to this, you know, podunk rural church. But it was just beautiful and so that’s definitely one of our traditions of. You know, no matter where we are, we can always find time to set aside that hour and a half to go to that service.
And then we come back and hopefully they’ll go right to bed. Especially when it’s those years where you’re putting all the things together still. So that’s really important. And then we get Christmas jammies on Christmas Eve, and I would’ve never guessed we would be that family. In December, there was always this big swim meet that I took one of my daughters to, and we’d stay in this hotel and we’d flip through all the ads for Christmas pajamas and it became our thing to pick out Christmas pajamas for the whole family.
So, so we’ve continued with that. But then a few years ago I got this wild hair that I would do a huge Christmas Eve party brunch thing. All my friends go running on Christmas Eve morning and I couldn’t really run anymore, but I could host a party afterwards. That’s kind of come and gone and I hope maybe one year we pick it back up at a smaller scale, but I think it was just too much.
You know, I think you have to learn. What to prune out of the holidays too. You know, we still, we typically go to a show, either the Christmas Carol or the Nutcracker, more times than they want to admit. I’ve drug them to the Nutcracker and you know, I think that some of those things where we’re not having to lead are, we’ve gone to the movies, things that, you know, just make it a little bit more enjoyable leading up to.
And then the other tradition we have, I loved what you said, Pam, about involving your friends, your community. That support system is, we make Christmas cookies with friends of ours that have teenage boys that are about the same age and we usually do it about a week ahead of time, and then we take them to the fire stations around town and deliver those.
And that’s been something that I think we’ve done that since the kids were four or five. And those first responders have seen everything they’ve seen, you know, gingerbread man, just dressed in bathing suits. They’ve seen them dressed as soldiers, as political leaders. You know, as the kids have aged and their imaginations have gone a little way, little.
These are not your traditional Christmas cookies. I’m sure they look at it and going, should we have these people on a watch list? But that’s really fun too. And you know, to let, just, to let the kids have their creative streak, but. And that’s their posse, that when the time comes, those are going to be some of the people that they need the most and to help to foster that tradition.
[00:14:31] Pam Kohl: Exactly. Wow. I want to come to that, come and do the mass with you sometime. I’m sure. It’s just to be able to see mass in such different places sound really cool. Yeah. And it’s , right? I. Can you tell us about what your life is like with a five year old?
[00:14:55] Katie Mackin: So I think this is also something that has, I mean, as anything with kids kind of evolves as he’s gotten older.
When I was first diagnosed, he was so little, like he didn’t really know what was going on. And I think Ann said, it was this creepy dark shadow in the background. Right. Now, and I’ll be honest, like when I was first diagnosed, he was so little and you just go down the rabbit holes and you wonder if your kid’s going to remember you at all.
[00:15:24] Pam Kohl: Yeah.
[00:15:25] Katie Mackin: Now, like I know he’s old enough that he’s going to remember me. And so I think that the, sorry, my voice is a little squeaky today. I’m getting over a cold from my said five year old. But I think the focus has kind of changed a little bit. And thinking about, okay, what exactly do I want him to remember and what are some family traditions that I want to make sure that we make a big deal about so that he does remember it if I’m not around.
So that the holiday season is a really special time for him. I think you know, For instance, my, my grandparents on my father’s side passed away around the holidays. And so I had seen firsthand holidays can be really tough when you lose a family member. And that’s something that I hope is not the case for my son, you know, years going forward.
And so I try to make a big deal about them. Also, I, I really like Christmas. We’re kind of a non-national family. We were both raised Catholic but don’t really participate currently. But we do still celebrate Christmas. And so one of the things we do is an advent calendar, but instead of like, you know, like migrating aunt used to get us the ones with the little chocolates behind all the doors.
And instead of doing that my step mom had given me a little house for him with like these little drawers and they could fit like a really small piece of candy or like a little clue. And so since he’s been big enough to do it, I’ve put like little clues or prizes and I try to mix in like activities, especially on the weekends when I’m not working.
Things like, you know, watching a family Christmas movie or decorating the tree or doing the Christmas cookies has this little event for the day mixed in with little prizes. Because also with working full time, you have to find things that are easy for the weekdays. And then we usually get together with at least some of our family.
My family is kind of spread across the eastern seaboard at the current tide. And my husband’s family is back in Chicago and we usually have some family visiting or we’re going to see some family. My husband works in retail, so we don’t usually get to travel very far. So a lot of times people are coming to us or he’s coming for a short period and then my son and I will go for a little bit longer period if I can get some time off.
But that’s kind of what we do for the holidays. It seems like no matter how things are scheduled, I always end up with scans around the holidays. And so it’s always juggling the schedule of time off with a family, with making it back in time for the scans or for treatment and not having to push them too far, too early.
Because I also participate in a clinical trial, and so they’re a little bit tighter with how you have to schedule those things. So that’s what we.
[00:18:32] Pam Kohl: Yeah, I was thinking the same thing about, I got head scans last week and it’s, we, you know, this whole thing about scan anxiety that all of us talk about.
And I think that having them done around the holidays, sort of ups the ante of that. Anxiety because it’s really you really want to know so that you can sort of be, take a deep breath and relax and enjoy it because it’s so close. But it can also be a heavy, heavy ham hammer right before the holidays.
And can you talk a little bit about your holidays and what happened last year and how it may affect this year?
[00:19:18] Ann Camden: Yeah, sure. So I went in for a second opinion at Duke last year on like December 21st or so, and the doctor there is a brain specialist and I had brain, and so she just by the. Symptoms I was talking about, I was having, the recent scans I had done just like two weeks earlier.
She had another set of scans done the next day at Duke, which was really sudden and urgent and terrifying. But, you know, I guess I thought, you know, I was going on a goodwill. I almost went by myself and thank God I didn’t. Because they came back in the room and they told me that I had lepto meningeal disease, which carries a, you know, a life expectancy.
Maybe months, possibly weeks. And you know, I just felt like my entire life crumbled around me right then. We were supposed to have a girls’ night that night and go out me and me and my girls and like I sat there in the waiting or in the room while they’re talking, canceled my movie tickets, like, you know, just craziness and.
So I feel like Christmas just got put like on this giant magnifying glass of this. This is my last one. I’ve gotta go out really big and it also happens to be that Christmas is my birthday. So there’s always that on top of everything else. And so, you know, I wanted to do something special and we came home and we picked up the kids and we’re like, we’re going to go look at Christmas lights.
And we drove around town. We tried to eat dinner. None of us were really hungry and we just talked about, you know, what the doctors had said. And, you know, they were pretty clear. They didn’t think I’d make it till May to high school graduation. Within minutes I had another from the…
[00:21:09] Pam Kohl: Which has been your goal from the very first diagnosis right? That you might see them graduate.
[00:21:14] Ann Camden: They were diagnosed, I was, they were in preschool. I saw their preschool graduation and I remember crying and… what if I don’t make it to high school and to be so freaking close? And of course, as soon as you know, you hit that goal, then you’ve got another one. So, you know, I wanted to see them go to college and pick their schools and all that.
And so I’ve been really fortunate, very blessed. But at the end of last year, at the end of the holidays we ended up, we had, I mean, I was really struggling. It was the worst I’ve ever felt. We ended up going to my brother’s in New Orleans and like a last minute flight on Christmas day. Kind of let ourselves be spoiled by them and their families, which worked out really great and was so much warmer down there too.
But you know, I had to come back and pretty much was told, you get back here, hell or high water if you have to drive it, if there’s a problem with your flight in the middle of the night, you’ve got to have treatment that next day, as soon as I could get back. And it worked. And then as we were putting away Christmas stuff that year, and they were really helpful of course I wrote out.
I wrote out cards for each one of them and I put them on the top of the ornaments so that this year if I wasn’t here, they would each have a card. And so I sat down the other night and I read them and I think I’m just going to make an addendum and put it back in the same envelope because there’s really not a word that I would change.
But I just balled buckets as I read them and just how terrifying that was in such a season where it felt like everybody else was so happy and you know, people are making these grandiose New Years resolutions, I want to lose weight. And I’m like, I just want to quit vomiting. It was just contradiction and trying to figure out, you know, I’m not, I don’t want others to feel, I don’t want pity, but I need some empathy sometimes. And trying to balance that I think was really hard last Christmas in that season. So, you know, I’m, I am really blessed that my husband and the girls have been really good. But it was terrifying. I felt like every time I’d had a coughing fit, you know, one of the kids would be there in the room.
Are you okay? Are you dying? I’m like, well, no, the doctors say I am. But I’m pretty determined it’s not going to be today. And you know, we just kinda went with that and muddled through it the best we can. But they have no idea that the cards were there and or that they’ll be there again next year just in case.
[00:23:47] Pam Kohl: So, yeah. That’s such a great idea. I mean, I think all the time, oh, I need to share my pearls of wisdom and which I do a little bit, but, you know, to somehow be intentional. And I think I was much more in that mode yeah, the first couple years, but. I see a therapist at Duke is where I’m treated that who works with people with metastatic disease.
And I was talking and about, you know, trying to be profound and every moment, every time Sophie comes home that I have to have some profound something and has it meaningful and all that. And she shared with me that she lost her mother to metastatic breast cancer. when she was in college and you know how hard that was.
And she said, you know, Pam. Most important memories for me are when I think about my mom, when I’m blue and I want something, my memory that comforts me is going to watch a romantic comedy because that’s what we did together. And us doing that together. You know, it doesn’t have to be profound. You don’t even know what you’re teaching your kids whether it’s intentional or not.
Right. You know, I thought I had to list out the 50 songs. They had to know that math. And, you know, because music is so important to me and I’m, I still fight that, you know, like, okay, what do I have to say something profound tonight? Because I do want to, but, and so I’ve thought about maybe I should just write my 10 lessons or something.
But also remember that even without doing it intentionally, they. Learning about persistence and, and having to be flexible and having to have a plan B all the time. Right. That if I’m not able to, I wonder how that’s different for you, Katie, with a five year old, you know. You can’t quite be, I mean, does he know you’re sick?
[00:26:12] Katie Mackin: This has been kind like something that I don’t exactly know how to approach because it has been going on since before he would have known what it was. And so we try like, you know, all the parenting books and guidelines and whatever you read because that’s, I read all the stuff kind of say to be age appropriate, honest and so, That’s what we try to do.
Like he knows that I go to the doctors a lot, he knows I have a big scar on my neck and I tell him it’s my robot neck because I mean, it’s full of a lot of metal. And there are certain things that I can’t do, like, you know, I’m not supposed to run. And so I don’t run as I, sometimes I cheat and I still run.
Don’t tell my doctors, but. You know, there are some things that he knows that I can’t do and that I can’t do it because of the things that I take medicine for in my robot neck and things like that. But we haven’t actually broached the big C word. And I think like when he shows curiosity about it, it’s kind of when we will like, give them a term for that. But we talk a lot about how everyone is different and how everyone has, you know, different things in their bodies that are different that we all have to kind of work around and kind of navigate and that’s kind how we’ve approached it. The, what I’m kind of thinking of, but I’m still fine tuning it, is, you know, like at, if you take it at a very basic level, like cancer is basically just some cells that did something they weren’t supposed to do and then they just kept going.
He likes Legos and I kind of think of ourselves like our Legos. And I feel like that’s kind of the approach that I’ll probably take. I don’t know yet. I think it depends on what age he is curious about it, but we try to be as honest as we can with him. So while I do feel a similar need to be profound, I don’t think it’s quite as stressful for a five year old and you know, it’s just, Don’t eat your book yours, honey, like , please wash your hands after you blow your nose.
Like don’t lick the table. You know, that kind of stuff, like normal parenting things. I don’t know that we’re quite at the level where we need that high level profoundness. I have felt kind of the similar calling to do like. Almost like a legacy project, I think is what a lot of people in the metastatic community call it.
And a while ago when I was first diagnosed, I started writing him birthday cards for all the big birthdays and setting them away. I haven’t quite finished but I am happy to report that some of them I do get to throw away now because we’ve made it through those birthdays. So that’s kind of where I’m at. But I like the idea of leaving notes in the Christmas present, in the Christmas decorations for them to find. That’s a great idea.
[00:29:20] Pam Kohl: It is really great. And I love the metaphor about yourselves are doing something that they’re not supposed to do. And I’m thinking like in our metastatic world, we have put them, if we’re lucky, we’ve put them in timeout.
Yeah. Right. And but they aren’t going to stay in timeout. And I know that for a lot of us, they may be in timeout and then they come out and then they go back. They speak out of that time now. Yeah. , it’s a great analogy. Yeah. I. So has it affected your personal joy in the season or has it expanded it?
[00:30:09] Katie Mackin: I think it has kind of, in a lot of ways, like, you know, there’s obvious the stresses because scans inevitably are around holidays. But I think it has forced me to pay attention more to the now like, Especially with a five year old, like you already kind of have to live in the moment because you know, they’re running this way, they’re running that way, they’re doing things that shouldn’t be doing.
But also like the joy that you see mirrored in their face with these types of things kind of forces you to stay here instead of thinking like five years down the line and doing all the what ifs and things like that.
[00:30:46] Ann Camden: Yeah, I think it’s a great question. You know what I love about Christmas and the holidays is, and I know it is bleak for some people. But all in all, I think everybody seems to have a little more joy in their life and maybe some of the issues that divide us are a little weaker that time. Maybe we’re a little more kind to one another. I like to think so. So I would think what it’s probably done for me is trying to remind me to be present more, which is an ongoing struggle where often, you know, I’m planning three days down the road or a month down the road.
So just being present in the here and now. And then I’m, I try to find things. I really love live music. So the coffee shop’s got live carols on Saturday night. You know, just to take in some of those types of things that, it doesn’t have to be big, it doesn’t have to be extravagant like I used to enjoy, you know, I’m not going to New York City to see the tree or anything this year.
But just to take a moment and have a share, a little cup of kindness, if you will, with some of the people around me that I tend to take for granted and and don’t see as much, right?
[00:32:02] Pam Kohl: I think that that we sort of are in a position with our kids being older, that we can be a little more intentional about how we bring the community in than if you have toddlers and you never know whether what they’re going to be like on any given night.
I can remember when they were little, it’s like, I don’t want to plan anything because I may just want to put them to bed. Right. And not have to deal with all. You know, their meltdowns, et cetera. I think it’s really interesting to think about whether, I mean, what it is that you hope you’re teaching, not just about the holidays, but if you could, I mean, this may be a hard question and maybe I should have told you, I might ask it so that you can think about it, but you know, if there’s one thing you.
Your kids to be able to say about you or feel proud of or that one thing that you want them to know and maybe how that shows up during the holidays. And for me it’s again, like I’ve said, to have the community involved and it’s Resilience. And you know, I don’t always say, what I want to teach you is that you can make choices about how you deal with problems and you know that we can wallow or we can try to find a way to find joy and to feel good and to, you know, one of the things I’m doing, as I said, is really trying to pace myself so that when we do.
The whole family come over and I’m sitting there over the a stove with olive oil, making the ls five different nights that I don’t ruin it because it has become a burden. And so doing whatever I can do to sort of keep that stress level down is something I want. I’m hoping that they’re going to learn from me because that’s just the way I am.
Do you have thoughts about that? What’s the one thing or the two things that’s really important to you to, that your kids have learned from you or your husband?
[00:34:33] Ann Camden: I think I can boil it down to two things. I think one of them is, you know, bigger than just the holidays is stand up and use your voice, especially as young women who are you know, just starting out in college right now, that stand up for what you believe in.
And, you know, some of that goes back to faith and how we each celebrate our, you know, Christmas and look different in everybody’s house that, you know, to stand up for. For whatever that is. And that’s, you know, I’ve tried to help get each of the girls slightly involved in some of the advocacy work over the last couple years and so forth, just so that they see, you know, don’t just sit around and complain about it, take the effort and make a difference.
I probably need to teach them balance a little bit more on that cause I don’t always get that right. But anyway. And then the other thing I would say, , you know, I hope, and what I think I saw, you know, and Katie, your son, is where my girls were when I was diagnosed the first time, is that they learned empathy a lot different than their peers.
And I’m really proud of that, that they’ve grown up knowing that everybody has something going on, whether their mother is sick or a grandparent. You know, there’s financial issues and financial toxicity because of healthcare that they have a pretty good sense of how fortunate they are most of the time.
But how everyone’s got something that they’re struggling with, and I don’t know that the average 19 year old sees it that way. So they’re not quite as self-absorbed as some of their peers and I…that’s something that I hope they continue to foster and to see how to live that out in their own lives.
[00:36:27] Pam Kohl: Katie, do you have thoughts?
[00:36:30] Katie Mackin: So, I like, I think one of the overarching themes that I like try to instill in hope that it stays, you know, with my son long after I’m gone is knowing that he was loved. Like, you know, I don’t want any doubt in his mind ever. That was the case. I think like the resilience thing is also really big for us.
You know, he has some of his own medical challenges that I don’t really want to get into for his privacy, but, I think one of the things that’s really important to me is set setting an example that like, maybe I can’t do things the way the average person does them, but I can still do those things. I just have to find my own way to do them.
And that’s something we try to kind of really push as an example for him. And that’s, you know, like one of the big reasons that I have gone back to work other than. Definitely learned about myself. I’m not a stay at home kind of person. I get a little loony when I stay at home. But like, you know, I work full time helping people and in a pretty active line of work.
And I think, like, you know, the average person that I see would have no clue of my diagnosis. And it’s because I do all the things. I just sometimes may have to do them a little bit. Am I tired at the end of the day? Absolutely. But do I still do all the things? Yes. And so, well, maybe I’m not running marathons like I’m still being an active, functional human being, and so that’s something we really try to like show through example for him that’s really important to us.
[00:38:15] Pam Kohl: Yeah, and it’s, I think I, there have been so many times over the last six years where, you know, there’s an opportunity, Max and I are obsessed UNC basketball fans, and there have been times when somebody has offered us tickets or me tickets to go to one of the games and it’s a nine o’clock game. And before I retired, you know, it was like there’s no way I can go to Chapel Hill and park and ugh… and living with metastatic breast cancer has totally changed my view of that. And I say, yes I can because this is what Max and I do, and I’m going to find a way to do it. And it can, it, you know, it goes back to that, the difference between. What’s a burden and being able to shift that a little bit and say this is important.
Cause it’s memory and it’s showing that resilience. And I know I feel that so much externally, you know, what we do with our families and how we behave when I was having horrible diarrhea for days and days. How I talk about it with my family versus the external world and how hard it is sometimes. And I really relate to what you’re saying about empathy because I’ll go, you know, I had a pretty public position and so I’ll go somewhere and people will say, well, how are you?
And we’re in a social, and I always struggle how to answer that because I so want to be authentic. Authentic, and I so want to let people know that I’m not okay. You know, I’m functioning and I’m, you know, I’m living with metastatic breast cancer and I’m doing those things. I love how you say that, Katie, but really, you know, I’m in treat.
And these treatments are hard and I’m putting one step in front of me. And it’s just that it’s not that I want empathy from the external world. By saying, well, I’m doing okay, or it’s day by day. It’s like, I want to use it as a teachable moment. And I hearing you say, talk about empathy that way. And it really helps me understand what it was, what it is that I’m trying to teach them, and that.
You know, they don’t need to be afraid of me, and they don’t need to not acknowledge it. But I’m not going to go through a whole story at a cocktail fundraiser about my diarrhea. But I do somehow want to make a point that living with metastatic breast cancer is forever. And we are not going to be cured. And we’re not going to be survivors.
And that’s very different from how it’s seen out in the world. And I feel the need to do that with my family. Obvious because they’re living it with us.
What is. The one thing or the two things that you would be just delighted to know that your kids are going to do every year because of, you know, like, I want to, I’m thrilled that Sophie knows how to make this hot fudge and that she’s going to, she may not make vodkas, but that she will bring friends over and do the peppermint ice cream with the hot fudge and that she will.
Engage her friends in traditions.
[00:42:16] Katie Mackin: So we have a traditional, and this is just traditional in our family. My mother makes this manicotti recipe that was passed down to her from her mother, and we don’t really, I don’t remember where it came from before that, but we’ve had it on every Christmas Eve. For as long as I can remember.
It’s kind of become folklore in our family by now. Right. So that’s one of the things that I hope that he carries on, you know, at least for some of the time to do on Christmas Eve. And the decorating of the tree, like putting, like we always turn on like. Old Christmas music, like being Crosby, like winter Wonderland sort of stuff, and do the Christmas decorating as a family and the kid gets, you know, lifted up as far as long as they can get lifted up to put the topper on.
And that’s something that I kind of hope gets carried on as well. Cause it’s such a, like a joyous time and experience.
[00:43:21] Ann Camden: We do a breakfast on Christmas morning. It’s like this, you know, cheese and egg sole and a lot of times it’s a Christmas cringle and some type of pastry and everything and fresh fruit.
And we set the table the night before and it’s set nicely and it’s got the Christmas tunes. I think music’s so important. It’s got some of the, you know, our favorite Christmas. Somebody makes the playlist every year now. And you know, I just think that’s so important. Sit and pause and kind of have that time together.
This year we kind of did it at Thanksgiving and we invited boyfriends for the first time. That was a little awkward, but we got through it. But I think, you know, as they continue to, I wanted to show them that it’s good to start bringing in those extras and it was multi-generational. My parents were there too, and you know, I want them to take that time and.
I think there’s something really important about eating together. So I hope that they, you know, no matter what day it is on, cause I’m sure the two girls are going to go somewhere else in this world for a while, but that they find time to sit down and celebrate together and and involve their dad.
Otherwise he’ll be crushed. But so, so yeah, I think it’s the eating together.
[00:44:40] Pam Kohl: One of the things that I struggle with, not just at the holidays, but overall is I want my family to be okay about grieving and to not be afraid of it. And that their grief honors me, right? And honors us as a family. And so I, you know, it’s sometimes hard to know what’s being morbid as people would say, and what’s trying to honor that.
Sadness and that’s okay because there’s something missing or someone at the table that is not there, although their spirit may be there. And I think that I’ve tried to sort of incorporate that in that, you know, in the Jewish religion, you light a York site candle on the anniversary of. The person’s death, which I think is a really interesting perspective.
And we always like the candle also during the holidays to acknowledge that, and I think that there’s something very I want my kids to not and Tom to. Be able to deal with it afterwards as sort of a comfort that grieving can be a comforting thing in the heart and not try to fight it. Right.
And I say all the time that I want as. When things get difficult physically, and if I go into hospice or whatever, I want to do that because I want my family to not be my caregivers, right? I want my family to love me and be there and comfort me and be together. I want the professionals to take care of me, right?
I don’t want my family to have to deal. With some of the hard things that happened. There are many professionals in hospice and other places that are available to do that, and I know I’m going to have to, you know, keep reminding my family that I don’t need them to take care of me. I want them to be there to comfort and love each other.
I didn’t mean to end this. On a hard note, but that’s sort the things we think about when we’re having, getting ready to go to scans and what are we thinking about? Yeah. And that if we’re not afraid of it to talk about it and to deal with it, then that maybe they won’t be either trigger anything for y’all.
[00:47:34] Ann Camden: When I was at chemo this afternoon there’s a partition, so I can’t really see the person beside me, but they had made the decision that they no longer wanted treatment. And and I like , you know, I was flipping through a magazine. I’m like, what? And it just, Like, it broke my heart on so many levels, but it was clear that the, it was an a slightly older couple not, not old enough by any stretch, but you know, it was clear that they had talked it out and thought it out.
And and, and in some ways it was really beautiful because they talked about how they didn’t want to be that burden on their children. And and they knew that the next few weeks would be really difficult, but, There’s no good time. And she’s like, you know, I just can’t do it anymore. And it’s been on my mind all afternoon.
So, you know, it’s one of those conversations that you do put off because there’s never a good time for it. But that’s a tough one.
[00:48:38] Adam Walker: Well, it, as we are sort of wrapping up the conversation, I’m curious if you all had any advice for someone that’s living with metastatic breast cancer right now that’s sort of struggling with this time of year?
[00:48:51] Pam Kohl: The best advice I ever got was when I was diagnosed, I had a colleague that had been dealing with ovarian cancer and, you know, it would be in remission and then it would come back, and then it would, you know, Very similar to what I dealt with. And I asked her to meet me for lunch to, cause I wanted her to teach me how to do this.
And I said, what, you know, I, how did, how have you done this? You’ve worked the whole time, et cetera, cetera. And she said, there are two things that I’ve learned and one, To be intentional about making memories with your family and being intentional to do it, but also intentional about what those memories are and what those memories may teach.
Right? And secondly, to always buy travel insurance. But for me, we don’t, we haven’t really traveled much. We are what we call travel virgins. And yeah it was a metaphor to me that, okay, well, I may not always need to have travel insurance, but to always have that plan B, whether it’s. Not being able to buy and be as extravagant as you said, and for a lot of reasons, but some of it is financial because our expendable dollars are now going to pay for oral chemo that yeah, our insurance or Medicare won’t pay for.
So we don’t have the same kind of thing, but I just. It has been really helpful tho and it’s simple. Those two things be intentional and to have a plan B so that you can do those things even if differently. So if you’ve just been diagnosed or you’ve been diagnosed for two years, or you’ve just found out you’ve had progression, you know, to, to.
You know, own it and understand that we have to live in the real world, right? And so we do need to be intentional, intentional about some of those things. But also maybe we won’t be able to go to Italy, but we’ll have Italy come to us or something. If for some reason we can’t go in October, I have to find that
plan B.
[00:51:12] Katie Mackin: So I think for me, like the piece of advice that I would give, especially for the holiday, Or just in the metastatic world, like in general is you know, like it’s a space where I think joy and sadness coexist a lot. And it doesn’t have to be like one or the other is a both and sort of situation. Where like, I think a lot of times people feel like you can’t be sad at the same time that you’re happy, but it coexist and it coexist a lot in the metastatic world.
And so during the holidays, like it’s okay to have a little bit of time to be sad and like take that moment and think, okay, well maybe I need to leave some letters in my ornaments for next year. But then also, Like, yes, I’m here to find those letters from last year. Like Woohoo. You know, it’s okay to have, I think those things coexist and sometimes if you’re really feeling like you have to fit into one or the other, you might be feeling worse and you really need to be feeling
[00:52:21] Pam Kohl: That is so helpful. That just helped me. Absolutely.
[00:52:27] Ann Camden: I would probably build on what Pam said about being intentional. My oncologist gave me any advice when I was first diagnosed way back in the late two thousands of. Their toxic personalities in your life, minimize the amount of time you spend with them.
And whether that’s family or friends who say, we’ve done it. We’ve always gone out for, you know, Christmas coffee. Well, this year maybe it’s not it, and it’s okay to protect your time and say, you know, this relationship’s just not worth me investing in that anymore. And I definitely see that around the holidays where I feel like, oh, I, I should do it.
I’ve always done it. Oh, maybe not. And then the second thing I would say is be present is just to take that time and a deep breath and look around the table or around the tree or your Hanukkah meals and say, you know, I really appreciate the people that are here and what they’ve done for me. And listen to their stories and share and just be present with one another because ultimately that’s the best gift we can give everybody is time.
That’s what most people are really hungry. Time and space. So yeah, you’ll get through it.
[00:53:42] Adam Walker: Well, ladies, this has been really profound and I really appreciate you being vulnerable and insightful and just taking the time to share your lives in your world with us.
[00:53:56] Pam Kohl: Thank you. Thank you, Katie. Thank you, Ann. Really appreciate it.
[00:54:00] Ann Camden: Thank you for having us. Yeah.
[00:54:02] Katie Mackin: Thank you.
[00:54:04] Pam Kohl: Thank you, Adam.
[00:54:08] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit RealPink.com. For more on breast cancer, visit Komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter @AJWalker or on my blog, AdamJWalker.com.