My Why: Catch-up, cancer, chemo and eyebrows with Katie Joy Duke

I wanted to have another chat with Katie after her diagnosis with breast cancer, to find out about the losses attached to a diagnosis like this, and how they differed from the loss of her daughter.

Welcome to another My Why from me, Claire Sandys, co-host of The Silent Why podcast. My Why episodes are  weekly audio shorts of my latest blog post, but this one is a bit different as I'm using this episode to catch-up with a previous Silent Why guest who has been through extra losses since we met her in early 2022.

Chris and I interviewed Katie Joy Duke in Episode 25 of the podcast (Loss 18: Loss of a full term baby), where Katie shared her story about the death of her daughter Poppy on the day she was due to give birth.

Sadly, four days before we released her episode Katie was diagnosed with Stage 4 Metastatic Breast Cancer. So I wanted to catch up with her to find out how this experience compared to previous losses she'd faced in the past.

Join me and Katie as we chat cancer, chemo, Uncle Fester, false eyebrows, staying healthy, sharing this kind of information with others, physical losses versus bereavements, and much more.

For more about Katie and her book, 'Still Breathing' visit:
https://www.katiejoyduke.com/

Transcript

Claire: 0:02

Hello there! Welcome to, what would usually be, this week's My Why, where I read my blog to you as an audio version. But today I've got an episode with a difference, because I'm going to catch up with a previous Silent Why guest. Welcome to My Catch-up. Chris and I interviewed Katie Joy Duke in Episode 25 of the podcast last 18 loss of a full term baby, where Katie shared her story about the death of her daughter, Poppy, on the day she was due to give birth. Sadly, four days before we released her episode, Katie was diagnosed with stage four metastatic breast cancer. So I wanted to catch up with her to find out how these new losses, and what she was going through, compared to the losses she'd had in the past. In this conversation, we chat cancer, chemo Uncle Fester false eyebrows, staying healthy, sharing this kind of information with others physical losses versus bereavement, and much more. I started by chatting to Katie about the day her episode of the silent my podcast went live, because she had fed back to me that she'd had a strong reaction to something she'd said during the interview. For context, when Chris had asked her during our chat, if she'd have listened when pregnant, if others had warned her about the chance of her baby dying, she

replied with this: 1:10

"I think they probably did tell us, I think that there's a sort of understanding that pregnancy and childbirth is the most vulnerable time in a woman's life. I probably would have gone yeah, but not mine, but not me, right? I mean, in the same vein that we're like, oh, well, everyone else gets cancer, but not me, or everyone else is like, I'm gonna ski down this hill, but I'm not gonna break my leg. I don't know, that would have necessarily changed anything." So I kicked off by asking her to describe how she'd reacted to hearing her say the word'cancer' having just been diagnosed with it a few days before.

Katie: 1:40

Oh, yeah, I was sitting on the couch. I was so excited to listen all the way through the podcast. And because I'm also one of those people that learns when I hear myself speak. And so whenever I do a podcast or something like that, I absolutely listen to it. And I'm like, Oh, wow, okay, I really liked how I said that, or like that. I was really processing in that way. And then I got to that part of the podcast, and I just couldn't believe I heard those words come out of my mouth that you know, 'you don't think it's gonna happen to you like cancer?' Like, I just like threw that out there. like, let me just pick a random thing out of a hat. And yes, I had had my first ever mammogram on March 14, because I had felt a lump in my left breast. And it was a crazy whirlwind of back to back to back to back appointments. And then on that Friday, March 18, my cancer was confirmed on pathology from a biopsy that I'd had the day before. So sitting on that couch, listening to the podcast, which I believe came out on the 22nd like four days later, right? Like, I'm like, okay, my podcast comes out. I am literally in the muck, and I'm like, like, the, the tar is like, I'm frozen in my cancer diagnosis, and just this intensity of everything. And then I hear myself say those words. So, I mean, yeah, it was not, I hit pause, and I burst into tears. And my husband came rushing to my side and was like, what's wrong? What's wrong? You know, because at that point, we were on high alert, like, what's going on? And I was just like, I said, that 'I said, I might, I don't know I said, you don't think you're gonna get cancer and I got, I have cancer' and which was when it was just nuts. And then also to think back to our actual interview, which was, I believe, the beginning of January when we actually did an interview. I mean, the cancer was already in me, right? Like so even then, like I was sitting there and I didn't know that that my body was was fighting this thing. You know, this invader that was uninvited and so intense, I think is the best way to say it's just that realisation like he said that we don't know what's coming. And you know, not to be cliche or glib, but it really does make the present moment that much more precious because we just to take this day, even today you know to take this day and be grateful for it.

Claire: 3:55

I couldn't believe it because we'd spoken to you about such a deep loss and it's something that you know was gonna I knew is going to impact a lot of people because you know death of a baby is always going to be something that really affects people.

Katie: 4:04

Oh yeah.

Claire: 4:04

But then to watch when your guests that you're spoken to about this huge grief, go through a completely different one. On one level obviously horrific, but then I'm like okay, well, I really want to speak to you again because a different set of losses.

Katie: 4:16

Completely.

Claire: 4:16

This is very different. This is physical .This is emotional. This is spiritual. This is so what does it look like? And I know that part of what it looks like for you is very cool earrings and a kind of a bald-chick look.

Katie: 4:26

Yeah, oh my God, I am rocking it. People do not think that I'm sick which is awesome. Like out in the world, you know, I'm not carrying myself in that way. I don't really feel sick. I don't really I definitely don't look sick and I am still trying to put myself together. But yeah, I have found out through this process that I 'quote unquote', 'have a very nice shaped head'.

Claire: 4:48

You do. You've got a good shaped head.

Katie: 4:51

I do have a good shaped head. I've had I've had many, many conversations with mostly men about being bald because mostly men are bald, and people are like they're like Yeah, what's up? You look amazing. You know, people are like, really men are really into it. But then women are just like, they lower their voices a little bit, and they're like, 'You look amazing'. Like, 'You look incredible'. And then I'm just like, 'well, thank you'. I said, you know, and then I'm like, 'I do have cancer. I do have breast cancer'. And then people are like, 'no!', because everyone thinks this is a fashion statement, right? Which is really fun. I mean, I have a four and a half year old daughter named Moxie. And we were driving home from Target, and she said this to me once before, and yesterday, she was just like, 'Mommy, I really don't ever want you to grow your hair back'. And I was like,'really sweetheart? what is it about it?' She's like, 'you just looked better without hair'. It was just the sweetest thing. So I'm like, 'okay babe, cool, like, I don't know how long it's gonna take me to grow back any hair, so knowing that you think that I looked at the most amazing bald is incredible.'

Claire: 5:52

How have you navigated that with with a child that age? Because that's obviously quite a big thing to see happen.

Katie: 5:57

It's been fascinating actually, one of the first things I did after getting diagnosed with cancer was check out a book at the library called Cancer in our Family, which was written by the American Cancer Society and I thumbed through it. And it was that's sort of like, intuitively, one of the things I do I immediately go and I try to find the book, like where, what are the books that are going to help me get through this because that's I'm a reader and a writer and author, obviously so and I thumbed through it. And then because of our previous loss with my daughter, Poppy, ever since Moxie was born. I mean, brand new baby, I mean, even in utero, like she, if we can transfer that kind of energy, or she could know who Poppy was like, I've been telling Moxie about Poppy forever. And so she's known about our loss. She knows I wrote a book about it, she knows she has a big sister who passed away. She also knows her grandfather passed away. Moxie knows more about death than the average human, much less the average four and a half year old. But that being said, when I was diagnosed with cancer, we immediately started talking to her about it immediately. Because I mean, I was, I was a mess, I was a complete wreck that first week of just trying to process and understand what this meant for my life. And also, because of that beginning, there's still so many diagnostic things that have to happen to even know like, what stage you are like, has it has it metastasized, you know, what's the treatment plan, we didn't know anything. So we immediately started talking to her about it. And we also talked to her school teachers about it. She was in preschool for nine hours a week. And then immediately, all of a sudden, I was like, 'Oh, my gosh, I need I need help. I need childcare. I have all these crazy appointments'. So what I did not know at the time was that the woman who founded and has run her preschool for 35 years now, also had breast cancer 16 years ago and lost her hair and she had a mastectomy. And so she has been this incredible resource to help normalise what I have been going through. And she empowered Moxie to talk about it. And there were days when she would send me an email and say, Hey, Katie, I just want to let you know that Moxie was talking about you on the playground today talking about how her mommy has cancer. And I want to let you know that not only did she seem like so confident and like, assured of herself, but I would walk over and facilitate and asked all the kids like, 'Hey, does anybody have any questions? Like, let's talk about this. I had cancer too like, does any, has anyone else had anyone in their family that's had cancer?' So what a blessing. And her name is Mary and Miss Mary, I love you because I know you're gonna listen to this podcast. Yeah, that has been incredible. And Moxie is super empowered by it. Some of her friends were like,'Why don't you have hair anymore?' And Moxie will say,'because my mommy has cancer and the medicine that she gets called chemotherapy makes her hair fall out.' And you know, children will mirror and mimic whatever you tell them, and she's been doing great.

Claire: 8:56

I love that kids will ask those questions as well. They're just so out there. Like they see it and they want to know why.

Katie: 9:01

Oh, for sure. I was at a splash pad the other day with Moxie, one of those little like, you know, playgrounds where the water fountains are all designed and kids are all running around. And I had a hat on and I was in my swimsuit, and I was playing around in this one little kid he he was underneath me of course, because he is short and I'm tall and he's looking at me and he is forehead bunched up. And he looked at me like something's going on there. And I had these really cool gigantic strawberry earrings on and I was like,'were looking at my earrings?' And he was like, 'Err, yeah, I'm looking at your earrings' and I was like, 'Do you want to bite one?' because they were strawberries, it's a joke, they're really great earrings. So he was like, 'No, thank you'. And I was like, 'okay', and then later on, like, 20 minutes later, he comes back up to me again. He goes, 'will you take off your hat?' And I said,'totally'. So I took off my hat and his eyeballs, like, got gigantic and and it was just funny because I realised oh, the first time he wasn't looking at my strawberry earrings. He was really curious. He was like, 'I don't think she has hair over there' and so it's been it's been really cool. Children are actually I did tell him I was like, yeah. And he was like,'What happened to your hair?' And I was like, 'I have cancer. And my medicine makes my hair fall out.' And I was like, and the look on his face of sadness. He was he really, he was just like, 'ooh', and I mean, he was maybe seven years old, eight years old. But you can tell I mean, kids these days, they've been through it. They know, like, maybe grandma had cancer, or somebody you know, and I asked him, I said, 'has anybody in your family had cancer?' And he just kind of nodded his head? Yes. And I was like, 'It's okay, man, I'm gonna get through this, but thank you', you know, I just, it's been really, it's been really sweet. I think what's a really interesting distinction here is that no one saw my loss with Poppy, you know, like, I was out in the world again, and having to figure out how to function in the world as a mother with empty arms. And no one, that little boy wouldn't have looked at me one way or the other, he wouldn't have known that I'd lost my child, because it wasn't obvious. But this loss is, is obvious, you know, unless someone thinks I'm just rocking a fashion statement, and then I tell them that, you know, I'm going through cancer, but like, this illness, quote, unquote, or disease, whatever is obvious to the world. And so it's facilitating my ability to talk about it in a way very openly. Plus, I don't hide anything, just a very open person. And this is making me more open. What's bizarre about it is that this has actually been one of the most mind blowing spiritual experiences ever, this cancer.

Claire: 11:32

Why? What makes it more spiritual than previous losses?

Katie: 11:35

Well, yeah, actually, and I was thinking about this, too, in anticipation of our conversation, is that the thing that I have lost most, in this whole process is my fear of death.

Claire: 11:47

Interesting, because for a lot of people, that would be something that would appear possibly.

Katie: 11:50

And it did, I mean, the fear, you know, the realisation of my mortality. I mean, because in my case, again, having had a stillborn daughter that I that I birthed and was able to spend some time with, I've held death in my arms. I've been that close to death. And most of us, of course, I mean, I'm 41. So any 41 year old has has had someone close to them die. And but you know, have we been there? Have we been there when that person died? Have we held them in their death? So most people I would think no, and yet with me and being with Poppy in that position, like I have, I have held death, I have been that close to it. And then when my dad passed away, three and a half years later, he's my dad, he was my bestie, like, so that passing was intense. And so I've written a memoir. And in the memoir, I go through my sort of journey of grief, discovery and understanding about death and life and love from both Poppy and my dad. And one of the things that I have intuited and sort of come to accept, and it's a common belief, but that, that Poppy and my dad are together in heaven, just somewhere, heaven with a lowercase h or capital, I don't know, doesn't matter, right. But there's somewhere else there on the other side. And when I got my diagnosis, that I had stage four metastatic breast cancer when that MRI came back, and the doctor told me that there was also cancer in my sternum, although it is treatable, and we are treating it as if it is curable. I had to face the reality that like I have, I mean stage 4 anything, right like it's it's big. And so my own mortality in a way that it never has before was something that I really had to confront. And in doing that, I for the first time truly allowed myself to imagine my own transition from life to whatever comes next. And when I did that, I realised that if Poppy and my dad are together, that means that when I die, I get to join them as well. And when I had that, oh my gosh, when I had that realisation I was just like, okay, all right. All right, let's do it. I'm not afraid of this cancer. I'm not afraid of what is to come. My body is responding really well to the treatments, which is very encouraging. But yeah, if they all get to be together, then I get to go be with them. And so now I don't want to leave people behind, like I'm not like excited to go I don't want it to be for another 40 years. Right and then I would like to peacefully in my sleep.

Claire: 14:44

That's the dream.

Katie: 14:45

Yeah, exactly. Reading a fascinating memoir about someone else or sipping on a glass of red wine looking at a sunset and be like 'it's time' and I just close my eyes and drift off, right? Okay, that's how I would like to go right.

Claire: 14:56

So if it's been the best spiritual experience, what about the physical because I'm guessing the physical experience has been pretty rough and very different because there would have been physical implications of going through the grief of losing Poppy as well, but very different. So what's that been like?

Katie: 15:12

Well, yes, physically, I have lost most of the hair on my body that the only hair that's really remaining on my body is our a few eyebrows, which I pencil in.

Claire: 15:25

Very well.

Katie: 15:26

Thank you. I know I think about my girlfriend who told me about this eyebrow pencil. And I just, I'm just every day every morning, I'm like, I love you, Rachel. Thank you. And in fact, my friend Emma, she's has sent me a link to like a variety pack of temporary eyebrows, which you can buy. And at some point, you know, knowing me, I'm gonna buy those things. Oh, yeah, rock them and I'm gonna I'm gonna be like today I'm feeling ambivalent. today. I'm feeling angry. Today...

Claire: 15:54

I'm suspicious.

Katie: 15:58

So I thought I would rock the temporary eyebrows. But

Claire: 16:01

I love that idea. You should do that.

Katie: 16:02

A few mascara eyelashes. I've got a few eyelashes remaining that I'm holding on to it. The hair loss process was intense. And I made, I had fun with it. I bleached my hair and then I dyed it hot pink. And then I shaved the really, really, really cool hot pink Mohawk.

Claire: 16:17

You did really rock that that I was envious of that.

Katie: 16:20

I know. I want everyone to be able to do it. You could do it, Claire. I mean, this is this is actually something like for your audience. It's just like, you could do it. You know what I mean, like you could have a hot pink mohawk.

Claire: 16:32

It's a shame that we need these experiences to go that far with just having fun.

Katie: 16:36

Yes! Well, that's the thing that the creativity I told someone the other day I said, the wellspring of creativity that is coming out of me is just extraordinary. I was like, I don't really know where it's coming from coming from. I mean, like, it could be just the sense of like, no holds barred. I'm like, it could be all the steroids.

Claire: 16:56

Go with it.

Katie: 16:58

I'm going with it, I tell you what, I understand why people use steroids. No, because I'm like, like they work. But I mean, so I've lost physically, I for two months, I took a chemotherapy drug called Adriamycin, which they call the Red Devil and they call it the Red Devil for a reason, because it makes you feel really awful. And that was rough. But you know, but it's over. Like, I'm, I'm through that, right? Like, I think that another sort of, you know, higher level, but also very simplistic philosophy is like, 'This too shall pass'. This is temporary, like nothing is permanent. Right now my mouth is riddled with sores, the inside of my mouth feels about two and a half times larger than it should meaning that like, my cheeks are in the way, my tongue is in the way, my my teeth are biting. Like, and I can't do anything about it. My white blood cell count is super low, but doable. You know, I mean, I'm fine. Because like, people are like, 'how are you?' And I'm like, I mean, 'I'm okay. Like, I'm fine'. I'm like, 'do you really want to know?' so and I'm honest with people like I share those those details. I've got blisters all over my hands. My skin has been really reacting to this new chemo that I'm on called Taxol. So we're actually thinking we're gonna have to change it because I'm like, super itchy and irritated. Like, my skin started bleeding the other day, when I was rubbing it in bed, it's just like, I just rubbed off the top surface of my skin that was dramatic. I was just laying there reading something on my cell phone, and I had what felt like an itch or I don't know, anyways, I started scratching, and then my fingers were wet. And I was like, I just had that moment of like, 'Wait, why are your fingers wet?' And I looked down and there was blood on my fingers. And I'm vain. I mean, let's be real. I care about what I look like, I take really good care of myself in general. And I saw blood on my fingers. And I looked down on my chest was bleeding. And I was just like, 'Urgh!, golly, this sucks. Like, this is hard.' Like, [sigh]

Claire: 19:05

When we spoke to you in the first podcast, one of the questions we ask everyone was have you asked the question why? And I remember you saying that you had this image of you standing in the middle of a field shaking your fist at the sky going, 'why?!' but you never actually did that, it never actually got to that point. Has that changed now?

Katie: 19:19

I think I know why. Intuitively, I feel like I got this cancer, because of the deeply traumatic things I've been through. And I don't know I don't know if there's science behind that, I haven't had the time to find and dive and find the books that say that there are links but to me if we all have cancer cells in our body, and just some of us get cancer and some of us don't, you know, for our lymphatic system at some point, it's just like, 'I can't do it anymore'. You know, and cancer, gets through like, which in my case it has, there has to be a reason right? Like, I was sort of the picture of health if someone had to see me, right? Like if you know judge a book by its cover, if you just looked at me from the outside, it would have thought, 'wow, like she's healthy'. And I was. And I said that to so many doctors sitting in their offices as I was getting consults and all this stuff, I was like, 'man, it sure does pay to be really healthy when you get really sick', because not a single doctor said that I had to change anything about my lifestyle since getting diagnosed with cancer. I mean, even once we had just, I will always remember this gentleman, he was so kind. Dr. Byrd was his name, and he looked at me and he's like, 'I'm not going to ask you, IF you exercise, I'm going to ask you what you do for exercise?' And I was like, 'Aw shucks. Oh, thanks'. Like, because he's like, 'it's obvious. You take care of yourself.' So have I shaken my fist? I mean, again, no, I will say this, I was on the phone with my oncologist when she called to give me the results of the MRI because it came back. And she was explaining she's like, 'so there is some cancer on your sternum'. And I'm listening, and I'm trying to absorb all this. And I mean, I hear that, but I don't really know what it means. And then we kind of got to some point in the conversation, and she said, 'Do you have any questions?' And I said, 'well, well, yeah, I do. I was like, Well, what, what stage is it?' Right? Like, I just I wanted to know, like, what is this mean? And she kind of took a deep breath, and she was like,'Katie, this is stage four'. And I think for most of us, at this point in our lives, we hear stage four, and we think 'I'm gonna die!' Like, you just think'does that mean it's terminal?' Just like, 'what are we, are we talking life expectancy now?' like, you know, and my, my dad died of cancer. So I know that at one point in his journey, he got to stage four and stage four meant that his prostate cancer had metastasized into his lymph nodes and had spread other places like it was, there was no turning back at that point. And I'm like, 'Well, wait, that's what I have?' So, when, in that moment, when she explained that to me about my, my sternum, and being stage four I had one of these sort of, like, 'Aha moments' that I've had so many times, and I write about my book a lot. The sense of knowing and the knowing was I said to her,'Dr. Johnson, I know why it's in my sternum'. And she said,'why?' And I said, 'because my heart has been broken so many times'.

Claire: 22:35

Aww.

Katie: 22:36

And that was her exact response. I mean, just human to human and she's one of the most scientific allopathic like straightforward people I know. And she was just like, 'oh Katie', and so you know, I again, I don't have this sort of'why me?' about like, why did I get cancer. Now have I felt sorry for myself? Many times in the last three months plus, I sure have, I have cried in my kitchen, like while I've, you know, it's funny, I was gonna say, you know, while I'm like doing these things alone, I've also put them on social media, so if anyone wants to see go visit Instagram. Because I've got I feel like I have to share this stuff. I'm I mean, I use my humour and my wit to get me through, laughter is the best medicine. I tell you what, I have been cracking people up these days. Like I love it. You saw my Uncle Fester lookalike!

Claire: 23:27

That was brilliant!

Katie: 23:28

I was in my bathroom. And I was just like, I kind of look like Uncle Fester. And I took one picture on my cell phone and took one selfie, Claire, that's how many I tried. I just took one and I looked at it. And I was like...

Claire: 23:40

Nailed it!

Katie: 23:40

And then I went I got a picture of Uncle Fester, and I put the two next to each other and like I applied one filter and I was like done. And that thing like people were losing their minds. And I have literally looked at that picture myself so many times to lift me up. I think I'm funny, right? If I can make myself laugh, then that's all I told my daughter that the other day I was like Moxie. People will always laugh at you. But girl, if you think you're funny, that's really what matters. If you can laugh at yourself...

Claire: 24:04

It gives other people permission to laugh with you, because people want to laugh with you, but when you have cancer, it's one of those things everybody suddenly thinks 'well, we can't laugh anymore because this is so serious'. If people listening to this then, and they're like, 'Oh, poor girl, like you know, she's been through she's lost her daughter and now she's got cancer'. What would you want them to know about your life right now if that's how they're thinking?

Katie: 24:26

Oh gosh, yeah, definitely. I don't need anybody's pity. That's that's one of the things that no pity and I'll take your sympathy if you can't empathise, but I would prefer you to empathise. And, and so, I would love your empathy. I don't need your fear. Okay, so don't don't smear your fear on other people who are going through a hard time, right? When I decided that I was going to share with the world that I had stage four breast cancer, it took me a while to process it on my own. I kept that very close to my chest. I told my immediate family but no one else and then finally I have to I'd had a brain MRI that came back normal. And that was scary and I went into that appointment. And I was like, I looked at the people, I was like, 'I do not have cancer in my brain. I was just like, this is not gonna be. I might be crazy, but I have not, I did not have cancer in my brain. Like, seriously, y'all. I'm like, I'm just declaring it right now. Like, I am declaring it so, like, I do not like my my head, I need my head'. So, you know, I was thinking about not ever telling anybody, I had stage four. And the reason I wasn't going to do that is because I didn't want to deal with everybody else's anxiety. I didn't want to deal with everybody else's fear. We do that a lot. We project our own fears onto other people when someone is going through something or something happens to someone. So I was like, you know what, not only am I going to tell people, what my stages and all this stuff, because I want to be an example. And I'm all about being honest and really saying it like it is but more importantly, I wanted to also use it as an example to say, 'Hey, I'm going through this and it would not help me right now if you got super scared for me. What I need from you is to show me love, what I need for you is to show me support, what I need from you is that lasagna on my front porch, or that playdate with my daughter while I have an appointment or to call my husband and check in on him and specifically ask how he is doing, not how is Katie doing? How are you doing Eli? Can we go for a walk?' So I wanted to be really clear. And I learned all of these things because I've already been through grief. One time I know how to grieve now. I know how to deal with trauma. It's not easy, but I know how to ask for what I need, and to find those moments to really celebrate because we aren't guaranteed anything.

Claire: 26:53

Never one to be kept down, since her last episode aired, Katie has also launched her memoir 'Still Breathing', and you can find links in the show notes for more information about that, or listen to episode 25 of the podcast to hear Katie's full story with loss. Not all of us are going to respond to trauma in the way that Katie does, because we're all unique. But what I love about her is her willingness and determination to be who she was made to be, and her hunger to continually learn from others, from herself and from her grief. Plus, she is really rocking the bald-chick as you'll see from today's episode image on social media. Thanks for joining me today if you'd like to help support the show to help me continue to provide this resource for others going through loss please visit the show notes or our website www.thesilentwhy.com and click on support.