[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’s guests had plans for their lives.
Sarah and her family moved into a new house. During the pandemic, they had a room picked out for a child she was pregnant with, had clothes picked out for her, and even a name, Leah Grace. Sarah was diagnosed with inflammatory breast cancer, an aggressive form of breast cancer and miscarried her child. Her family was ready to take on the world and instead they were grieving. Katie is a mother of three children. Her husband was in his third year of residency. When they found out Katie had inflammatory breast cancer, they were planning to move to a new state for his new job, enjoy their little family, and a life with a paycheck. They then had to redirect. They were scrambling to stay near doctors, panicking that Katie wouldn’t be here for their children, and the paycheck would now be going to medical bills.
Ladies, thank you for being on the show today to discuss your expectations for your lives versus reality. Sarah, let’s start with you. What does your life look like now?
[00:01:40] Sara Diemer: Well, we still live in the home that we are going to move to. That was a trip during the pandemic, but you know, it’s not what we expected, but we still have two great children. I have my stepdaughter and I have my daughter, which I mean, they’re both my kids. And life is good in a lot of ways. I’m not currently in like harsh treatment, so I still do treatment every three weeks. I get immunotherapy, I get Herceptin, I take estrogen blockers, which we can get into taling about that those are awful, but I’m living, and that’s something with metastatic breast cancer that I don’t think you can take for granted. And so, there’s a lot of blessings in life and I think we still, if when the date rolls around that, miscarried Leah, that’s still a hard one. But we have our way to remember her. But there’s a lot of good in life and my husband and I are really thankful for the kids that we do have and the life that we currently have. And even the house that we, it was nice upgrade from home a lot.
[00:02:46] Adam Walker: And Katie where are you at now?
[00:02:49] Katie Strobel: So I am still in the thick of treatment. Actually I found out that I had breast cancer last November, so November, 2022. So far I had four months of intense Chemo. On April 3rd, I had a double mastectomy and had some lymph nodes removed. Right now I am on starting week six of. Radiation to my chest. And so I’m still kind of trying to get to a place where, I feel, I don’t want to use the word safe, but like, kind of, yeah, I mean, where treatment isn’t my everyday life and, I still try really hard to live my life with these treatments happening.
My kids do have to fight for time with mommy in between doctor visits and treatments and scans and all that stuff. But if there ever was a pro to cancer, it would be really just living in every single moment that I have with them. So, we’re still in the first year of knowing about my cancer and fighting it and trying to get to a comfortable spot. So it’s pretty crazy, but we’re doing it.
[00:04:17] Adam Walker: I wonder if, like, if you could each maybe talk about how you’re going about reconciling what your vision for your family was, your vision for your life was versus sort what you’re dealing with now, if you don’t mind.
[00:04:29] Katie Strobel: Yeah. So my husband and I, we have been in the thick of him becoming a doctor for the last seven years. We did medical school and just finished residency. So we were looking at a time where he was going to have a set schedule, he was going to be home more, we were going to be able to travel. And we’ve, him and I have lived in North Carolina basically our whole lives, so we were going to try and adventure to a new state and actually, have a paycheck that was able to live life with three kids. And that all exploded when I found out I had breast cancer because we could no longer move. I needed to stay with the doctors I had because I have some really amazing doctors. We’re close to family here. My amazing mom actually moved in with us when I found out I had cancer to help me take care of the kids. And so it went from, it went from this dream we’ve always had of finally him having stability in his job and we were done having kids and we were finally just going to grow up with our family. And it went into this terrifying spot where that was no longer the case, it was, it became, how long is mom going to be a part of this?
And that was a really hard transition because we had all this new happening and we were very excited. And then instead of our little family becoming the center of attention, I unfortunately became the center of attention and just trying to do everything that I needed. And so, the expectation was, here comes our family, we’re finally on our two feet and whew, did we get pushed to the ground!? So, yeah, I mean, it completely rocked our worlds. Not that there’s ever a situation where it doesn’t, when you find out you have cancer, but yeah. So now every day is, there is no plan. We just take every day for what it is.
[00:06:44] Adam Walker: And Sarah what’s your experience been like?
[00:06:46] Sara Diemer: I mean, I’m listening to Katie and like, I think I’m getting like PTSD back the first year of cancer that like at the beginning there you’re just, I feel like you’re on like this rollercoaster that you can’t get off of. Like you do what the doctors are telling you if you have doctors that you trust, right? And I felt like I had a really good rapport with my doctors and I had doctors that I thought were really good too. And it’s just, Every day something new, whether it’s a new you’re doing treatment or it’s a new treatment, or you have a new symptom or I really struggled with like, passing out with one of my chemo.
So it’s like we were at the ER, it’s like, it’s just something is going on. You’re just getting hit with one thing after another and you are just trying to survive, right? You’re just trying to make it through the next day. So that all just sounds so familiar. I was just thinking about some of the stuff people said to me, they just, you’re like throwing me back there and it it is, it feels unsafe. I think that was a really important word that you used in wanting to get to that safe place. And I do feel like I am more of a safe place right now. Now I live by like scans, right? I get scans every six months. I get scans every eight months and then sometimes I feel like I tell my doctor, like me and my hips are really bothering me.
So I have another scan right then, right? because. With stage four, you’re pretty much it’s not if it’s when, right? That it would return. While we do have a few outliers that are living much longer these days, and, I look to them and I’m like I hope I can be one of those people that, you know, they got 20 years and they’re still living, that’s amazing. But scans are kinda. What you live by and you’re good for a while, and then those scans roll around and all the nervousness creeps back in. And for me, I put my faith in God and I want to be here as long as I can. But if it’s my time, it’s my time. But I can’t help but Istress out about that some.
So for me, a lot of it is living the day by day with waiting for the other shoe to drop, right. For me too is while I’m done with most of the harsh treatment, I really struggle with the aromatase inhibitors or the estrogen blockers. I think those are a tough treatment and I know some people are like, I feel great, and I’m like, that is amazing for you. For me, they make me feel like I’m about 120 years old and so I just deal with a lot of pain every day and that has made me feel kinda like less of a mom a lot of times to the family. We just had a big fair, I was telling Katie like we, we were not able to like meet up and talk before this as much as we wanted. The fair was a big deal, but to go walk around at something like that, sometimes I just wind up in so much pain. I’m just not like, an active mom the way that I would hoped I would be in my thirties.
[00:09:48] Katie Strobel: The thing that I think people who are either not, watching someone closely have cancer or have cancer is that the expectation is, oh, okay. So when I first found out about this the journey was chemo surgery, radiation, about a bing butter boom, you’re healed. Hallelujah. Right?
[00:10:12] Sara Diemer: Yes.
[00:10:12] Katie Strobel: And what I think people can’t wrap their heads around is that changes constantly. It’s never black and white. It’s never, know, you do this, and this, and you’re good.
And that’s really hard to explain to the people who are following me with on my journey. Even for my mom who sees it every day, it, she can’t, when I’m like, well, it’s kind of this, it’s kind of that. And she’ll be like, “Well, what does that mean?” And honestly, I don’t even know. I’m like, I put my hands into my doctor’s, my life into my doctor’s hands.
And I’m like, yeah, I just nod. And I’m like, keep me alive. Sounds great. But people will say to me like, oh, you’re almost done. Like. And I’m never done. This is it for the rest of my life. I will have scans it. It’s not like you said when and or if it comes back, it’s when it comes back. And I just recently found out more information that totally will change my treatment plan and how long we are going to be, getting to a place where I can be stable when I had my surgery. They were hoping that they would get all the cancer out, and unfortunately it was higher up in my lymph nodes than they were expecting. So, I had that surgery and was hoping to come out of it cancer free, and I didn’t. And so that changed the path from chemo, surgery, radiation, to chemo surgery, radiation, chemo.
Then we’ll see what happens. So it’s really hard to explain to somebody who’s not going through it. They’re like, oh, I thought you’d be done by now. And I was like, yeah, same. It’s so, it’s just so hard to explain to someone because it’s constantly changing. It’s, and there is no, you’re almost done. There is no, oh you’ve got this. I, day to day, yes, I’ve got this, but I don’t know what is going to be happening. And even a week, I mean, I will go in for a normal doctor’s appointment and my life explodes with new information. And so it’s like especially hard for my husband, who is definitely somebody who’s like, we do this, and that’s the result and that’s what we work with. And unfortunately in this case, things are thrown at us constantly where we have to keep changing what is happening and what the plan is. And that’s really hard for others to keep up with.
[00:12:43] Sara Diemer: Absolutely. Like I think TV has done us a great injustice, right? The answer, you get bald, you throw up a lot and you’re done. And stage four is so confusing and truth be told, I didn’t really get it right until I had it. Even like I had grandparents that had cancer and it was either that you got better or quite frankly, you died. And there’s this middle ground with metastatic cancer that you’re, it’s treatable. It’s not curable. And so our doctors work really well to keep us alive and as long as we want to fight. And I think both of us being at a young age want to fight. Right? We want to do what we can do. We want to hang on until that amazing. You like cure comes. So we can, and obviously I’m further along than you in this at this point, so, I have hair.
It’s not as, it’s not as obvious. I also walk around with one breast and I’ve given up on putting on a, I call it my Foob, I don’t wear my Foob, that’s really uncomfortable. Uhhuh. You know, there’s different signs that something’s not quite right. So I look okay and, but I’m like, oh, it’s a really bad pain day. And that doesn’t compute for some people because what is this middle ground with metastatic breast cancer? You have bad days. It just, you can have a good day, but you have bad days. It’s just, people don’t understand that you can be really quite sick, but okay, but not great, but you’re not like everybody else. So, this is information for the general public.
[00:14:18] Katie Strobel: I to, I mean, I totally agree with that. I’m currently walking around with a flat chest and no hair. Well, I say that I have a little hair.
[00:14:27] Sara Diemer: You do.
[00:14:27] Katie Strobel: I’m getting there.
[00:14:27] Sara Diemer: You do. And that’s-
[00:14:29] Katie Strobel: But it’s true, I mean, I think I am somebody who I always want to see the bright side of things. I always, while I’m alive, I’m living, that’s kind of how I’m living through this is that each moment, I’m just trying to get the best I can out of it. But it is hard because. I’m constantly reminded that I have cancer. When I look in the mirror I have no breasts, I have no hair and I think, chemo physically was the hardest thing I’ve ever gone through, but I’m currently in radiation, and I think mentally that’s the hardest thing I’m going through because I have to go every day.
Every day at a set time. I’m reminded you’re sick; I, and so there’s no tricking myself that day that I’m fine because I have to go lay down and have this thing zoom around me and it’s right in my face, you have cancer. Will I have cancer tomorrow? Will I have cancer in a year? It’s so that’s really hard mentally, even though it shows up just as tight skin or a sunburn it’s what’s happening in my thoughts that is the hardest part of that.
[00:15:49] Adam Walker: So, so I’m curious like, you both mentioned that this is a continuous process and people struggle with understanding that, so I would imagine that you get a lot of, kind of very well-meaning check-ins from people that end up kind of just being reminders.
That this is, that you’re dealing with this thing. So I guess, I guess really two questions there right. Like what type of check-ins are you prone to getting from very well meeting individuals, but also like what kind of check-ins are helpful? For like, what could, like, how can people check in on how you’re doing, without it being kind of this downer moment for you?
[00:16:33] Katie Strobel: Yeah. I mean, I actually have a very knit group of friends in my neighborhood. I don’t think I could have gotten through the last six, seven months without them. because the check-ins from them aren’t check-ins. They’re just them treating me normally. And that normal treatment is their way of checking in. Them texting me and saying hey I am doing coffee this week. “Would you, do you want to come?” And just that invitation. Like, makes me feel so much better, even though I might be too tired, I might be sick that day. I, I might have a doctor’s appointment, just them continuing to keep me in, we call ourselves the housewives of our neighborhood, like the Housewives of Beverly Hills or something like that.
But, you know, to keep me in that group is the best check-in I could have because it’s, it kind of reminds me that, yeah, I have cancer and this sucks, but I’m still me and these are still my friends and I’m still Katie. I’m just, living with this crazy thing, but I’m still alive and living and I can still go to coffee and I can still meet up for the play date. And I am going to the pool with you guys. I’m not filling out this bathing suit, but I will be there. Okay. So, I mean, that’s a big thing for me is the, and I don’t even know if they noticed that’s the check-in they’re doing, but that means just so much to me that they’re still including me in everything.
Instead of being like, oh, you know what, Katie has radiation this week and I just, let’s just not even. Invite her because that might upset her. No, it’s fantastic that I’m getting that invite because then I can say, oh, I may not feel good today, but I’m going to feel good in three days. Let’s do something.
And that is means the world to me.
[00:18:52] Sara Diemer: I just appreciate, like when I’m talking with my friends, since I am like at a different point here, if I’m like, “Hey, I’m kind of having a bad pain day,” or I’m just not feeling myself. Like at this point they know enough to be like, “All right, that’s cool.” It’s not like I have to be like, “Okay remember sometimes like “I’m just like, not feeling the best” and like have to go in some long-winded explanation. Like they’ll take me at my word and they’ll step up or fill in, or not make me feel bad for having to beg off of something and that means a lot to me. And that actually happened last week. Like I run youth group at my church and Wednesday was just bad and I can’t give you a great reason sometimes why I wind up with a bad day. What that’s the common culmination of, but I sent out like a Facebook message and I got like, all these people are like, “Hey, okay, well we’re praying for you. Take the day off.” we love that you work with our kids, but you get the day off too. And that, that meant a lot to me, that they had my best interest at heart. And they just genuinely care and understand where sometimes. I just have run into a lot of people just thinking, well, I should be good now, but I have this group of people that’s like, “Ok, we get it. You’re not good all the time.” That means a lot that they’ve kinda come along this three years to be like, “Okay, we get that.:
[00:20:11] Katie Strobel: Yeah, I, and also another way that you know helps is I will text my best friend who I’ve known since college and I will just say, I’ll just send her a text that says like, “This sucks,” or, “I can’t believe this is happening to me.”
And instead of her being like, “No, you’ve got this, like, keep trucking along,” she’ll send back, “Yeah, this really does suck.” Like, just kind of that validation that I can have a bad day, like Sarah said, is nice. Sometimes I’m not looking for, “Oh, you’ve got this. Oh, you’re going to beat this.” Because I don’t know, I don’t, I want to believe that, and I will, until they tell me there’s, nothing else we can do. But, having somebody say, “You’ve got this, you’re going to beat this is” sometimes really hard because you’re like, I don’t, you don’t know that. I don’t know that. So for them to just validate my feelings and be like, “Wow, yeah. What you’re going through is the worst thing I’ve ever heard” is sometimes really nice to hear, because I, I think that, but then I’m like, “Oh, well this person has this going on and this person has that going on. So, I’m still alive and I’m still breathing, so I need to be appreciative.” and so just that moment of “No, you can cry, you can be mad” is nice every once in a while. I don’t want to dwell in that feeling forever, but I, it’s healthy to have that moment of, this is the worst. And it’s nice to have, friends who are like, “Yeah, this, that you’re having a bad year.”
Just that validation of, yeah, this is the worst thing ever. You don’t always have to be, on for us. You can be, depressed or sad. Or sometimes I’ll just start laughing and my husband’s like, “Oh, okay.” But I just need that moment of like, wow, this is really happening to me. Like we should be outside playing and running around.
Instead, I’m have ice packs on my chest because they just removed my breasts. So sometimes having that reality moment is nice and then we can move on and we can have that, we’re going to beat that, this mentality, because I think you really need that. But it’s nice to have those moments of, “Oh crap.”
[00:22:39] Sara Diemer: Yeah.
[00:22:40] Adam Walker: That’s good. Thanks. Thank you for sharing that. So, so then last question. You’ve both had a trajectory, a path in mind for your lives that both, that path got dramatically changed with your cancer diagnosis. There’s a lot of people that have breast cancer that had plans for lives and are now dealing with a very different reality. I wonder what advice can you give our listeners that are facing that new reality?
[00:23:04] Sara Diemer: Okay, I’m going to say specifically for me I think it’s okay to mourn what was lost, right? I think you need to process that. And that’s taken a long time. Like when I was beginning in the throes of cancer. I don’t know that there was the time to specifically mourn and process that because you’re just trying to live right and you are in a hundred different directions with stuff to do. What we lost was not only kind of some plans for our lives, but like a child, right. And so we have found specific ways that, that we mourn Leah. But I want to talk very specific about that for just a second. The day that we lost was the day that I also had treatment, and that’s when we were allowed to still have people come to treatment with us. Can you have people come to treatment with you, Katie?
[00:23:52] Katie Strobel: I could have one person sit with me during an infusion.
[00:23:56] Sara Diemer: Okay. I still can’t even have up there when I get my infusion for herceptin. Anyways, we have multiple people precovid and we would play board games while I got treatment. And so on the anniversary of Leah’s passing, we have those same people, our friends come over and we play board games. And so we celebrate her life still as short and little as it was. So we still find something good outta what was lost, right. And we still remember, but then I think you spoke to it nicely that you can go, “This stinks and we lost something. But it’s not like all the plans in the world are gone because I have cancer.”
Like I said before, I have two children. I have a loving husband, I have a house. He’s got a great job. I still do work part-time and currently right now, I’m blessed with a safe place, right with my cancer. I don’t think it will always be like that, but there’s zero reason not to celebrate where I am. And so is this what I thought I’d be doing? No, I very much was on a track to be still teaching college and I miss that. But I’m teaching youth at my church and I have two girls to raise and I have a husband to love, and I have multiple other projects that I’ve just decided to do around their house. Like there’s stuff I can find to do to stay busy, to enjoy. And so don’t let cancer rule your life because it is a disease that lies to you that says, I’m going to take over everything. And when you feel that you have those good days, push that back and say, I’m still going to live my life.
[00:25:35] Katie Strobel: Yeah. I mean, to piggyback off that, I think the thing I have learned from this journey is you need to take control of what you can. I can’t control my cancer, I can’t control my treatment, but I can control you know, spreading the word about inflammatory breast cancer, helping a fellow cancer survivor or thriver. Get through these steps. I started when this all happened, I was not really somebody who would share too much personal stuff, but for some reason I just knew I needed to take this cancer diagnosis and make it a good thing for other people.
I started a blog called MomsDon’tGetSick.com. Where just, I’m just kind of being real about what’s happening and what I can take control of. Like Sarah said, “I have three children that I still have to raise, even though I have stage four breast cancer.” Each day I make sure that I’m doing something that’s in my control and not letting the cancer stopped me from living. Like I said, while I’m still alive. It’s there’s a metaphor of like, When you step on an ant hill, do the ants just roll over and call it a day? No, they start rebuilding that ant hill. That’s what you’ve got to do. And it’s hard. People will say to me, “How do you stay so positive? How do you put one foot in front of the other?” And I’m going to tell you right now, it is the hardest thing I’ve ever had to do is to keep moving. But I refuse, I refuse to let this cancer stop this amazing life I have because it is, it truly is. I have a husband who is my absolute best friend. He’s the love of my life, and I have three beautiful children.
I have amazing friends. It’s hard to say, it’s crazy to say I’m so blessed when I have cancer at 29 years old, but I am, and so it’s just something that you have to find the things you can control because if you focus on the things you can’t, it’s going to eat you from the inside out. I can’t control if my cancer’s spreading, can’t control if the treatments are working, but hey, I can control that we’re going to make cookies tonight and watch a Disney movie, okay, so that’s what I’m going to do. You just got to really focus on the things you can do instead of the things you can’t.
[00:28:06] Adam Walker: Yeah. Wow. That’s amazing advice from both of you. I cannot thank you both enough for. For giving us that insight, for sharing your story, for being vulnerable. Thank you for your story. And thank you for joining us on the show today.
[00:28:20] Katie Strobel: Thank you.
[00:28:20] Sara Diemer: Thanks for having us.
[00:28:27] Adam Walker: Thanks for listening to Real Pink, a weekly podcast by Susan G. Komen. For more episodes, visit real pink.komen.org. And for more on breast cancer, visit Komen.org. Make sure to check out @SusanGKomen on social media. I’m your host, Adam. You can find me on Twitter @AJWalker or on my blog adamjwalker.com.