Chris Cahill: As you just heard, Anna and Jordan's story is about far more than a single breast cancer diagnosis. It's about the invisible trauma that rides alongside disease, the caregiver burden that often stays unspoken, and the quiet panic that can set in even at supposed milestones like the five-year you're done, goodbye moment. It's also about how something as simple as a camera, a notebook, or a knitting project can become a lifeline. Today's conversation starts with a phone call that changed everything. Anna was a young mom with a three-year-old son sitting at her desk when she heard three words no one is ever ready for, you have cancer. In that moment, her world crumbled and it exposed a brutal truth about our healthcare system. The clinical machine kept moving, but the emotional reality of the patient and caregiver was nowhere in sight. and her husband Jordan did something extraordinary with that experience. Art is a form of medicine that helps people connect who they were before, during, and after their illness. Take this conversation as a reminder that every data point on your dashboard is someone whose world might've just tilted while the rest of us kept walking to lunch. If we can build systems, campaigns, and care models that honor that reality, then stories like Anna and Jordan's don't just move us. They change how we show up for the next person who hears, cancer. The very next day they picked up a camera and began documenting not as content, but as a way to survive, to process trauma and to close the gap between what patients live and what institutions see. Over time, that project turned into a calling. Today, they are human insight experts who use visual storytelling to help pharma, biotech and healthcare organizations truly understand the lived experience of patients and caregivers. In this episode, you'll hear Anna's story, how anticipatory grief nearly broke Jordan as a caregiver, how art can act as medicine, and why letting people be themselves on camera can reveal more than any focus group. And if you work in healthcare, this isn't just a moving story. Anna and Jordan are gonna challenge how you think about patient journey, risk, control, and what it really takes to make people feel seen. Anna Jordan, welcome to the podcast.
Rathkopfs: Hey Chris, nice to be with you. Thanks for having us.
Chris Cahill: Thanks. I really enjoyed the conversation we had at pharmageddon, but love for you both to introduce yourself to the audience.
Rathkopfs: Do you want me to start? Hi, I am Anna. I'm originally from Prague, Czech Republic. I've been living in US for 20 years. ⁓ I'm a storyteller and what really changed the trajectory of my work was 10 years ago, I was diagnosed with breast cancer and we started to document our story, our journey, because we noticed that we, I'm talking about us, both of us, we noticed that there weren't that many stories that I could relate to, and you, right? We felt very isolated because of that. Yeah, and so we just took our lived experience and we started applying it to helping tell the stories of others that also maybe felt like they were on the margins of the mainstream conversations. And how could we kind of tap into this, you we call it the lived experience gap and help bridge that gap between, you know, institutions, organizations, companies, and then the patient and caregiver community.
Chris Cahill: I think ⁓ what do is so important because there is a huge gap and we're going to talk more about that. I would, I'd ask you not even ⁓ to what's your job, but what role do you play in people's lives today?
Rathkopfs: ⁓ that's interesting. I feel like we ⁓ validate the experience that people have with health because everybody has a story, but you feel like it's just your story and it might not be important to others. But then when you say it out loud, you realize how important it is to other people to connect with you. We like to say that the personal is universal. And I think people don't always care when you talk about cancer as a kind of like random thing that affects groups of people. But when you talk about how it affected your wife or yourself or your son or your daughter, it then takes it to a level where people I think can really actually see themselves sometimes in other people's stories.
Chris Cahill: Yeah. I want to go back to the beginning and talk about that because I think your journey and the way you went through your illness and what you're doing today is so important. So let's go back to that day that everything tilted for you guys. ⁓ can you ⁓ or remember the first time you heard that diagnosis of cancer? Not the medical details, but what did ⁓ feel like? what happened you?
Rathkopfs: So I actually received my diagnosis over phone. So ⁓ I got a phone call from a hospital. They told me ⁓ the woman at the end was the results of biopsy. And she asked me if I have five minutes. ⁓ ⁓ was sitting at my desk at the time. And I was like, of course I have five minutes. ⁓ she goes, well, the results were you have cancer. ⁓ Then she asked me, do you need anything? And I remember standing at the window looking out and like, I felt like my world just crumbled. And then seeing all the people walking down the streets and the realization of the disconnection, like my world crumbled, but everybody else is going for lunch. And that was actually the last one of the last times she ever took a call from a doctor. So that that experience was so traumatic for her that she kind of shut down for the next few weeks, months in term. She wouldn't if she saw like the hospital number on her phone, she just couldn't pick it up. And so like as a partner to her, I started kind of. taking those calls so that I could more objectively try to understand what they were saying and help Annie in a way also kind of navigate the shock of, you know, she was 37, we had a three year old son, we were kind of thinking and trying to build our family even more. So this couldn't have been more of a shock to both of us.
Chris Cahill: What did it feel like for you on that day when you heard she had cancer?
Rathkopfs: Well, my mother had cancer when I was a child. So I was about 12 when my mom had cancer. And so when I heard Anna's cancer diagnosed, I just, I crumbled. It was just all this kind of buried trauma that I thought hadn't touched me my whole life. I just instantly was terrified and it kind of resurfaced all this other kind of trauma I had had from an earlier cancer experience.
Chris Cahill: there's the disease and then there's the accompanying trauma that comes along with it. And there are two different things, right? So Ana, ⁓ what fears you feel you weren't allowed to say out loud at the time?
Rathkopfs: Exactly. Well, I didn't want to say that I'm scared that Jesse, our son, won't remember me. Yeah, that's still very, makes me cry every time because just the idea, I remember laying down next to him in the bed and telling him that I will do anything possible to stay with him. Even at the doctors, I remember telling them that just throw on me anything you have. I have to stay here. My child needs me and my husband. He always forgets that part.
Chris Cahill: In that order. What about you, Jordan? you said you had some trauma from your childhood, but this is a whole other level.
Rathkopfs: I mean, it probably took me about two years to start feeling like I could talk about stuff with anyone about what I was experiencing. But I started going through like really intense emotions that I later found clinical terms for, like anticipatory grief. So I was actually very in a very real way picturing on it as not alive, which then also went towards my parents and other people in my life. And it was just I was almost paralyzed. I was like all of a sudden. I went from a 37 year old kind of going to bars and having a good time and just being like a younger dad to quite literally not knowing if I was gonna have my wife concerned that my parents weren't gonna be here. And I couldn't navigate it very well. eventually I actually did start going for help when I realized it was impacting my ability to be a present caregiver.
Chris Cahill: And I think that's, that's a missing piece because cancer doesn't just affect the patient, right? It affects the family.
Rathkopfs: Yeah.
Chris Cahill: you mentioned you got ⁓ news over the phone. ⁓ did the healthcare system feel most out of sync with the emotional reality and ⁓ you were actually going through?
Rathkopfs: ⁓ I felt the emotional reality. There was no just that two words. ⁓ I felt it was very clinical. I, you know, as a visual person, I felt very disconnected from any visual materials I saw. ⁓ It even went so far that when I got any materials from doctors and I just saw these ⁓ people on the pictures, I wouldn't even open it. because I felt that's not for me. I don't smile. I don't have perfect makeup, you know. Yeah, that's where I felt very disconnected on the emotional level.
Chris Cahill: So when did you decide to pick up a camera?
Rathkopfs: the day after I would say, the day after I heard that I have cancer. We actually had a very quick conversation about it because I think we both needed to come to agreement on how we were going to approach this. ⁓ And so we gave each other consent, And we still, in our practice, think consent is really critical. think... Consent doesn't just mean permission to do it. It also means making sure that people understand the full implications of doing it. That how you feel today, maybe in 10 years, you might feel differently. But we did have that conversation. I think we both realized that we were going to need it more for almost for ourselves, like a therapeutic treatment. than anything, the fact that it became a bigger something was secondary to what we needed it for was really to close that emotional gap that we're talking about where we could already sense that the medical team's calling her on her phone and leaving a brief five minute message about, we already sensed that there was gonna be a lot of problems navigating this with the medical professionals.
Chris Cahill: It's amazing that you started that quickly, given the trauma that you faced, but when you look at some of the images that you guys captured, they're powerful and we're going to include some of them as well. When did you realize this isn't just our story, but this is a pattern of illness?
Rathkopfs: So, interesting, like for me, I felt that it took me longer than for you. I think that you were more public about what we are doing than I was. I think I was just focused on the first phase was like really focusing on taking photos. Yeah, and then ⁓ I just... I personally found it once I started to be public and having women, random women reaching out to me and sending me ⁓ pictures of themselves or taking pictures because of what I did. I think also, ⁓ you know, it's also tricky because interestingly, so Ani has some trouble with her memory from that first year. because of the treatment she was in. So I don't mean to speak for her, I do remember somewhat differently things because I wasn't in chemo and radiation. ⁓ I do remember she was really, as an immigrant, really surprised and shocked about health inequity and that she didn't understand why hospitals had marketing campaigns because in her country they don't do that. And then... having to fill out the insurance forms before even getting seen. This was all just new to her. And I think that's when she started realizing, oh, wow, this system actually can really leave some people behind pretty quickly. almost as soon as she got better, maybe a year and a half later, she really felt strongly about wanting to do a project that would focus on other people who felt unseen and misrepresented or underrepresented in the conversation around cancer. You're right. ⁓ I'm realizing. Yeah.
Chris Cahill: These are the side effects of the drugs and the disease and the care that, and this is why you need caregivers to partner with.
Rathkopfs: Exactly. Yeah. To help you. And that's why I believe so much in ⁓ telling other people's stories because it really validates where you are at the moment. We just feel like we got very lucky in some ways. ⁓ We know we've had many people who haven't been as lucky in our lives. And so when we do these kind of projects, it's really we're always thinking about that. Just like who are the people maybe that... really need to feel seen.
Chris Cahill: So ⁓ long after your diagnosis did the book come to be?
Rathkopfs: Oh, the book that's much longer. That's like, yeah. Now on my, so we were photographing from the day after, right? We still are working on it. We're still working on it. It's like, it feels like this is the milestones that we need to document. But when I was in my five year mark, you know, the mark that everybody measures and I remember doctor telling me, are going to be basically bye bye. We don't want to see you. We hope we don't see you again. Hope. Okay. We hope not to see you ever again. And I suddenly felt panicking. I felt like, why am I going to do? This is so scary. And I came home and I told Jordan that we are going, we have to do something tangible out of that.
Chris Cahill: Tell me more about the panic.
Rathkopfs: ⁓ there was like a full panic mode. I felt like I'm being abandoned. nobody, they don't want to see me again. So who am I going to see? Who is going to help me? ⁓ what if, what if it comes back? Like where is the place that I can turn to if I don't go to my doctor? ⁓ when am going to talk to somebody completely new? Yeah. Yeah.
Chris Cahill: and they probably thought they were helping you.
Rathkopfs: Well, it's funny, you know, it's because like my mom, I remember when she hit her five year mark, she felt cured. She like even like, you know, was, mean, she still would worry every year before her scan. She would be upset. But like she took that five year mark as a really good thing. And then it was interesting to see Ani, this other really critical woman in my life, have very different reaction, which is why I think that it is important that you always realize if you know one patient, you know, one patient and everyone has different, which is why we think it's so important to actually really dig in with people and to better understand like what you're doing now, people's individual truths and how that also other people might be like that too.
Chris Cahill: And when we first met, ⁓ thought you guys were visual storytellers, but you corrected me and said, no, we're human insight experts. ⁓ the audience what that means to you.
Rathkopfs: Thank I mean, so a little bit of my background, which I'm getting into was before doing professionally visual storytelling, I worked a lot in a boutique agency with influencers around social causes. So I always kind of had this feeling of like, are the things that motivate society and culture to actually do things that will make a real change? And then when Ani got sick, was, you know, obviously our careers took a different path and we started thinking about the different ways in which in which maybe we could do that in this world. And so part of the work that we do, think, like, it's part why we use visual storytelling specifically is that, you know, I think 70 % of the population processes information visually. In the United States, we have an average literacy level of third graders. We hear all the time, even from the CDC, nine out of 10 people don't understand medical information that they're being provided. So we do see visual storytelling as the mechanism and the tool that can unlock a lot of feeling of connection and information. However, we see that as the tool. The insights that you get should guide that tool. So for us, it's not about just telling a beautiful story or showing a beautiful story. It's understanding really, where are these gaps? And where are the places where people feel there is misunderstanding and could be better understanding. so once we can uncover and tap into that kind of insight element, that is what we use to fuel the mechanism of how and if we should even turn this to a story. Cause sometimes you don't even necessarily have to, not everything is worth a story. Sometimes it's better to sit on things. And that's why we feel the insight portion is really important. Cause it lets you make more of a strategic decision about. how best to engage publicly.
Chris Cahill: Ana, when you're sitting with a patient or a caregiver now, what do you pay attention to that other people miss?
Rathkopfs: lived experience. Like I just, ⁓ just listened to them and see where their voices hitch. ⁓ And ⁓ that gives me a feeling of, ⁓ this is important Do we want to go there? I also need to ask them, I pay attention to ask them if they're okay with that. because there are certain elements people are trusting us with their deepest fears and the worst parts of their lives. So we need to respect that. If there are certain things that they just don't want to go in, I ask them, are there any places you don't want to go in? Is that too painful? Because I don't want to break people. I want to make sure that I treat them with respect. Well, that's kind of true. That's true. Well, all the respect is true. But we do want to break people in the sense we want to break the barriers that they feel they need to put up to protect themselves. And so it's not about breaking them in a way that like actually is painful. It's actually healing. Because what we have found is like sometimes when we talk to people like, ⁓ my God, I haven't even talked to my therapist about that. I'm just realizing something I've never. That's when you feel like you've really kind of done your job when. And I think the reason that happens is because we do treat people as people and we treat them as collaborators. We don't call them consumers. We don't call them patients even sometimes like we. We're very careful in just kind of treating them as people first. And I do think that that's really helpful in trying to build trust and uncover the stories that you don't know you need to hear rather than just reinforcing constantly the stories you think you need to hear. Yeah. And going back to that, it's interesting because so many people come prepared with their story. They like have like, they know what they want. They are like hitting what they want, what they think that I want to hear. And I have to like, we both have to ask like the questions in between, you know, like they just like zoom through it and you just have to dig deeper. Okay. Even a lot in the patient advocacy space, cause a lot of people are used to this. used to being asked to share their story and there is a certain transactional element to it too. Like they're, being asked to share their story because of certain place sees benefits to them and helping share their story as well.
Chris Cahill: Right.
Rathkopfs: I think sometimes people are a little too coached and a little too rehearsed. And that's what we as storytellers are really careful about and pay attention to is how can we get to those elements that don't feel coached and don't feel rehearsed so that you really feel like you're hearing who this person is.
Chris Cahill: And it sounds like the story comes before the photograph. Is that always the case or?
Rathkopfs: Yeah, usually would say usually, but sometimes it develops through the photo shoot, you know, like our video, like when we ⁓ film people, like sometimes we realize that this after afterwards that we should add something. Yeah, we were doing campaign once with an influencer and she kind of asked us like, OK, so, you know, she started doing smiles and all this happy stuff and like, say, well, what do you guys want from me? Because we weren't really overly directing her. And we're like, we just want you to be yourself. And she started to cry right away. And she's like, no one ever lets me just be myself. I'm an influencer. have to project a certain kind of thing, but it's nice to not have to perform for once.
Chris Cahill: Yeah, I was thinking, you you wonder how many people don't even know what themselves are anymore. But that's where the stories come into play. I think that's how, how you get down to the next level.
Rathkopfs: Yeah, 100 % agree with that.
Chris Cahill: ⁓ in healthcare, you it I hear it all the time, we need to understand our patient's voice. We need to understand our patient's journeys. ⁓ What are people getting wrong around these stories and journeys?
Rathkopfs: I mean, I feel like they're not really treating people as equal partners. That's really the core, I think, that people talk about patients a lot and do invite them sometimes into the process. But very often, I don't think early enough. And with enough actual decision-making trust, like, you we were talking to an agency and we told them that we let these... patients work with us on the video edit in like the back end of the software. And they were shocked. They were like, wow, you trust people to do that? I was like, well, why wouldn't we? They're the ones who lived through it. Like, why should I trust creative directors who don't have lived experience more than people living through it? I think we all work together to create the best version of a story, but not to include the people who actually know from lived experience what they went through is to me just kind of doesn't make sense. And I think that sometimes there is an issue with control. ⁓ People like to, obviously there is a lot of money on table. So you have to be careful. There is compliance, there is all these, all these things, but there is also that human element that sometimes like you don't have to control every single detail. Or that you can control things in a way that still feels emotional and real. So like I think about like sitcom television, right? There's rules. You can't use the seven bad words. You can't show nudity. there's Seinfeld was a great show. Yeah, there's wonderful things that were created with these constraints. So for us, think sometimes maybe I think people are a little too risk adverse because they're so worried. But I think if you just know what the what you have to stay clear of that actually sometimes gives you freedom to be creative and think through how you can express something with those constraints in place.
Chris Cahill: we can't forget that treating people, ⁓ you know, not just just running health care systems or ⁓ selling drugs. There's more it than that.
Rathkopfs: 100%.
Chris Cahill: you talked about, the, ⁓ the agency having bit of an aha moment about, ⁓ having patients help ⁓ it. there another project or a moment you can think of where you just saw a room full of people have some light bulbs go off, ⁓ when they saw a project.
Rathkopfs: Yeah. Well, we just worked on a rare disease project and you know, it's a disease that makes mobility difficult. And I think people are coming from different parts of the country. So some from, you know, Midwest, some from the Northeast. And what I saw was that the disease itself is very alienating in a lot of ways, even within their own family and friends. And there was something about them coming together in this one shared space. for the first time and really talking with each other and collaborating with each other on storytelling about the experience that it just kind of, I don't know if it was an aha moment, it embodied, think the best of what these things can be because it really helped people feel seen. It also helped people find support and it also helped create a message that the campaign had some really good, results in terms of engagement. You know, it's rare disease. So engagement in rare disease is different than in oncology. But that I think that the reason it was received well is because people actually kind of felt like a team together and they felt less alone, even while somehow still feeling like their individual story was being honored.
Chris Cahill: And rare diseases sometimes are even more alienating, you feel like you're totally alone. Very few people go through that. And you know, I love that you've turned your story into a way of making people feel seen. ⁓ You also talked art as medicine. ⁓ I want to into that a little bit more. ⁓ When you say is medicine, what do you mean by that? Like based on ⁓ what you've lived what you've seen, what's the power?
Rathkopfs: we know how much it helped us. ⁓ You when I like look, ⁓ I know that I'm creating at the moment that I'm creating something that will help me five years later. I literally did not know that. And then five years later I would be looking through my work ⁓ and would feel that it's still me. I would be connecting my dots together. I would be connecting the person before, during and after. So I knew how important that was for me. So I know how important it is for everybody else. mean, you know, we see that there are therapies out there that people use ⁓ in addition to chemo and radiation. People use exercise. People use meditation. ⁓ People use journaling. And these are all things that have proven therapeutic effect. I think art is also in that category. And we're seeing that in the neuro arts version in your arts world. And we're seeing doctors starting to prescribe even in certain places art as something. What I love about art is it's available to anyone. You don't have to go through an insurance company for it. You don't have to be approved. You don't have to dig up the costs if it's too expensive. Like you can do it. Anyone has the access to it if they so. so please. And I think that's why it's so important. But then also in the way that you can use it professionally, it also can provide therapeutic effect. For instance, like when our story kind of has spread a bit, we've had people reach out and say, I can't tell you how much it helped me to finally see someone ⁓ and showing the things I feel that I never see anywhere else. ⁓ that's helping me emotionally navigate what I'm going through. So I do think that or it can serve the individual as a form of medicine. And I think it can serve the collective as a form of medicine as well.
Chris Cahill: you Anna, that you something you didn't know it helped you five years later, but there can also be little things that can help you in the moment also, right?
Rathkopfs: ⁓ 100%. Like I remember when I was going through a chemo, I would be like packing my camera and I was thinking about the photo shoot that I'm going to do with myself. I wasn't thinking about the doctor's appointment. So I was putting my brain in a different space. I was in different space. ⁓ So that's yeah, I know that helps. I know people who are writing. And I know how much that helped them to just put their thoughts on the paper because you just want to hear it. You just want to validate what you are going through that it is bad. It can get better. But right now you might feel horrible, but or you might feel great. And it's good to document that. And I mean, when the art, I know people knitting and it helps them and you can create beautiful art knitting.
Chris Cahill: And I saw you, I think it was in the book or it was on the website. You had a mood feeling tracker ⁓ with a reef. ⁓ that was Jordan's, okay. Tell me more about that.
Rathkopfs: Jordan. Also, after, about the first seven months, I started going to therapy. And I just ⁓ partly because of this anticipatory grief and like the feelings were becoming really overpowering. And they introduced me a cognitive behavioral training therapy. And I had never heard of it before. And it was kind of one of the only tools that I found that actually was helping me get through the day. because I was finally able to recognize the thought I was having wasn't necessarily reality. Just because I had the thought and the emotion didn't mean Anna was going to be dead in two years. And so that helped me. mean, I that sounds a little crass, but like that's how intense it Like I was convinced that she was going to be dead in two years, like because my mind was going there and I had no way to navigate it. So using cognitive behavioral therapy really helped me a lot. to kind of break that looping thinking process I was trapping myself in essentially. That goes back to your question when you asked what we didn't want to tell each other or ourselves. So Jordan was not telling me that he thought I'm going to die. I mean, that's part of problem too, and like, the law, but like, this is what happens when you let non-professionals who are really scared go online. So I found like study, was reading studies and I was like, this was nine years ago, there was less information than there is even now, and less even options. And then I just, what I was finding without someone who could actually talk me through it and just left to my own devices, truthfully just terrified me. Like all I knew was her too was an aggressive disease, less you know, at that time perceived as having less survivorship for especially in young women. So everything I was reading was just kind of like I was seeing it through the filter of my own fears because I'm not a doctor, because I'm not a scientist. And so ⁓ that was where I was going. I was going, I was finding the information, but without any professional to help me guide myself in a healthy way through processing it.
Chris Cahill: not only you're seeing it through your fears, you're potentially seeing it through other people's fears as well. So it can compound. It's a double-edged sword because, you know, now there's so much information available that, you can be way more knowledgeable but have to be careful as well ⁓ because Lord only knows what ⁓ you'll find. You got to get it from a reputable source.
Rathkopfs: Especially if you're going to rely on AI, for instance. So I've been doing that too now. I'm not saying I'm above any of this, but AI is in a way made to appease the user. And it's supposed to assuage the user. And in certain settings, that's great. And in others, that's not so great. When you're scared, then you're asking, why am I scared? Yes. I understand you have a fear. It's dangerous situation. But it can also get dangerous when like I was having other health symptoms I was worried about and I was scared to go to a doctor because I kind of was worrying about like, you know, ⁓ my God, what if I have cancer or something? So I went to AI and I kind of kept asking questions until I felt like it was telling me, ⁓ you'll be OK, basically. Like even when I first started, like you should go see a doctor. Like I kept pushing it to like basically try to help analyze it in a way that would make give me some peace. That's kind of dangerous. because I have a sister who's a doctor and like if I call her like with a problem, she's like, go to a doctor. I don't want to give you any advice because you need to get checked out. And if I'm wrong, I don't want the responsibility of having told you it was probably okay and don't get it checked out.
Chris Cahill: ⁓ it's a, it's a good takeaway, Because I think what you're saying is if you're dealing with something, if you're think you're sick, if you're going through something, don't keep it to yourself. ⁓ You talk to other people about it. Talk to a professional about it. Get help.
Rathkopfs: Easier said than done though. And that's why storytelling is so critical in this space because most people want to avoid bad news. Most. mean, like they don't want to find out they may have cancer and like a lot of people will check it out. But most people don't. They really want to just think it's probably nothing. I think if you see stories, though, where someone else kind of thought it was nothing, but it was something and you can kind of, you know, I don't mean that I'm trying to make people scared. by trying to help people understand that it can be anyone. Like one thing about illness is it does not discriminate. It doesn't care how rich you are, how poor you are, what country you're from. And for that reason, I think it's just kind of important to help people see themselves in the possibilities so that they don't just, you know, we had a woman who told us she didn't get checked out for symptoms for two years almost because she only saw older white women. with cancer and she wasn't an older white woman. And ⁓ by the time she got to a doctor, she was diagnosed de novo stage four with a really aggressive form of cancer. And so had she seen people that maybe kind of reminded her more of herself and her community, maybe she would have been more proactive in getting checked out.
Chris Cahill: Jordan, caregivers that feel like they have to be the strong one, what advice would you give?
Rathkopfs: and I think both of us should answer this because I only also became a caregiver, but, know, ⁓ for me, I think the advice I would give to others is try your best to remember that you're important and that you also deserve to be taken care of. I think for myself, at least it was easy to slide into feeling like, who am I? She's the one going through cancer. Like, like I shouldn't at all complain about anything. But the reality was I was under a lot of pressure. I can't compare it to what she was going through, but it still was pressure and it affected me and my well-being very directly. And I don't think I felt I had the right to help myself. So my suggestion to others is I think, ⁓ feel the right to help yourself too. That doesn't mean to prioritize yourself necessarily over the person, but certainly do prioritize yourself. So ⁓ know you want to... me to answer like as a caregiver, for me, ⁓ I think Jordan covered that, but for me, what was very interesting was I remember about two years or a year and a half after the first phone call, we were going through some of the photos and we came across a photo. It's in our book of me and Jordan in a waiting room or at the doctor's office. And I remember that moment. I was goofing around the front of the huge mirror. There were always huge mirrors for whatever reason. to see myself progressing. ⁓ then I saw, but that was the first time when I noticed Jordan, like, I mean, really noticed because he is sitting there with his hat down and all his posture is just so defeated and so scared. And that was the first time that I actually like really, really realized that it's not just my fear, but it's also Jordan's. And for me that photo like symbolizes what people around you go through. because it was so physical, the disease itself is so physical. I was so wrapped up in my ⁓ symptoms and the tiredness, exhaustion, and then seeing the other person was really hard. But I realized that there is another person going through it with you.
Chris Cahill: It's wild that you share that story because I was looking at the website earlier and that photo stuck with me. I know exactly which one you're talking about. So we'll pull that one and show it to people. I didn't understand the context. I just knew he looked miserable.
Rathkopfs: Yeah. Yeah, she was goofing around like she was she was just trying to keep it light for herself. But like I didn't realize she was taking pictures. I was like head down, like just trying to get through through it. And then. Yeah, I mean, that's what's interesting about. You know, documenting each other, you kind of sometimes what you're going through is different. And I remember what Ani said to me was interesting, too, when she became a caregiver more so for her mother. was that she found it much harder to be a caregiver than a patient. And that kind of stuck with me. Yeah. I remember how much I had to, there were a lot of emotions that I had when I was helping mom. ⁓ but I remember how much I had to guess. And I felt like I was guessing all the time. How is she feeling? Is she okay? Is she worse? Is she in pain? How can I help her? Like, how can I appease these symptoms? And It's really hard to ask all those questions all the time because that's where your brain goes once you see the person. Yeah, she told me, know, she knew what the chemo felt like in her body. she kind of had going the person going through it, she actually knew exactly how she was feeling. But for myself, watching from the outside, not that gap between, you we keep saying the word gap, but there is also a patient caregiver gap. between the person receiving some of the care and the person giving some of the care between what they understand about each other's experience. I thought that was interesting that like, I hadn't really thought about that, that like Ani in a way felt more control at times because she knew exactly at least how she felt inside. Whereas the caregiver doesn't always understand how the person they love is feeling, especially when you get into other diseases like with memory and Alzheimer's and things like that.
Chris Cahill: Yeah, yeah, it takes a toll on everyone, not just the patient. So ⁓ if you could go back ⁓ to yourselves on that first day of diagnosis, what would whisper each other's ear? ⁓
Rathkopfs: Well, I would probably, I don't know if I would whisper it to you. I don't mean it that way. Who would you whisper it to? Like myself, I guess. Yeah, it's not nothing against you. I would just tell you to be nicer to yourself and don't take, like if I'm going to give Jordan advice to his past.
Chris Cahill: You
Rathkopfs: I would tell him to be nicer to himself and not to carry everything by yourself because he was very, he was like trying, not trying, he was the solid rock that felt like he's crumbling inside. But for me, he was the wall. And I want him to actually share more of the crumble. because I think that might have helped you ⁓ as a caregiver. like for myself, I would tell myself not to expect that I will be the same person ⁓ coming out of the diagnosis and treatment as I was coming in. Because I remember when my oncologist told me, ⁓ you know, it's going to be tough 12, 13 months. I remember thinking, okay, that's nothing, I can do it. And thinking I will be the same person and not realizing that I will be completely different.
Chris Cahill: Jordan.
Rathkopfs: Man, hers were good. Yeah, I I'm so smart. I mean, guess if I could tell, and the question was what I would say to her, ⁓ I think I would probably say kind of what she's saying to myself. Like, I would just encourage myself to not be afraid to ask for help. And even more importantly, not be afraid to admit I need help.
Chris Cahill: Or do yourself, either way.
Rathkopfs: think it's taken me a long time, like, I don't know, about nine years to fully accept and embrace that, that actually trauma is a real thing and it can affect decisions and can affect a lot of things in your life. And that's important to acknowledge that and do what you, what maybe you can do for yourself to try to admit you need help and get some. then my advice to... Anna, guess, ⁓ I actually wouldn't have. I feel like she handled everything so, I mean, I was so inspired by her even today. I mean, I just don't, I don't know how she did it. I don't know how she does it. Like, I'm always amazed by how she's handled herself. So I don't have anything for her, but definitely for myself.
Chris Cahill: Well, I'm inspired by both of you. mean, the fact that you're telling the stories, but also helping others tell their stories is really making a difference. So I appreciate the time and it's been a great conversation.
Rathkopfs: Thanks Chris, this has been really wonderful. Thanks for having us.
Rathkopfs: Hey Chris, nice to be with you. Thanks for having us.
Chris Cahill: Thanks. I really enjoyed the conversation we had at pharmageddon, but love for you both to introduce yourself to the audience.
Rathkopfs: Do you want me to start? Hi, I am Anna. I'm originally from Prague, Czech Republic. I've been living in US for 20 years. ⁓ I'm a storyteller and what really changed the trajectory of my work was 10 years ago, I was diagnosed with breast cancer and we started to document our story, our journey, because we noticed that we, I'm talking about us, both of us, we noticed that there weren't that many stories that I could relate to, and you, right? We felt very isolated because of that. Yeah, and so we just took our lived experience and we started applying it to helping tell the stories of others that also maybe felt like they were on the margins of the mainstream conversations. And how could we kind of tap into this, you we call it the lived experience gap and help bridge that gap between, you know, institutions, organizations, companies, and then the patient and caregiver community.
Chris Cahill: I think ⁓ what do is so important because there is a huge gap and we're going to talk more about that. I would, I'd ask you not even ⁓ to what's your job, but what role do you play in people's lives today?
Rathkopfs: ⁓ that's interesting. I feel like we ⁓ validate the experience that people have with health because everybody has a story, but you feel like it's just your story and it might not be important to others. But then when you say it out loud, you realize how important it is to other people to connect with you. We like to say that the personal is universal. And I think people don't always care when you talk about cancer as a kind of like random thing that affects groups of people. But when you talk about how it affected your wife or yourself or your son or your daughter, it then takes it to a level where people I think can really actually see themselves sometimes in other people's stories.
Chris Cahill: Yeah. I want to go back to the beginning and talk about that because I think your journey and the way you went through your illness and what you're doing today is so important. So let's go back to that day that everything tilted for you guys. ⁓ can you ⁓ or remember the first time you heard that diagnosis of cancer? Not the medical details, but what did ⁓ feel like? what happened you?
Rathkopfs: So I actually received my diagnosis over phone. So ⁓ I got a phone call from a hospital. They told me ⁓ the woman at the end was the results of biopsy. And she asked me if I have five minutes. ⁓ ⁓ was sitting at my desk at the time. And I was like, of course I have five minutes. ⁓ she goes, well, the results were you have cancer. ⁓ Then she asked me, do you need anything? And I remember standing at the window looking out and like, I felt like my world just crumbled. And then seeing all the people walking down the streets and the realization of the disconnection, like my world crumbled, but everybody else is going for lunch. And that was actually the last one of the last times she ever took a call from a doctor. So that that experience was so traumatic for her that she kind of shut down for the next few weeks, months in term. She wouldn't if she saw like the hospital number on her phone, she just couldn't pick it up. And so like as a partner to her, I started kind of. taking those calls so that I could more objectively try to understand what they were saying and help Annie in a way also kind of navigate the shock of, you know, she was 37, we had a three year old son, we were kind of thinking and trying to build our family even more. So this couldn't have been more of a shock to both of us.
Chris Cahill: What did it feel like for you on that day when you heard she had cancer?
Rathkopfs: Well, my mother had cancer when I was a child. So I was about 12 when my mom had cancer. And so when I heard Anna's cancer diagnosed, I just, I crumbled. It was just all this kind of buried trauma that I thought hadn't touched me my whole life. I just instantly was terrified and it kind of resurfaced all this other kind of trauma I had had from an earlier cancer experience.
Chris Cahill: there's the disease and then there's the accompanying trauma that comes along with it. And there are two different things, right? So Ana, ⁓ what fears you feel you weren't allowed to say out loud at the time?
Rathkopfs: Exactly. Well, I didn't want to say that I'm scared that Jesse, our son, won't remember me. Yeah, that's still very, makes me cry every time because just the idea, I remember laying down next to him in the bed and telling him that I will do anything possible to stay with him. Even at the doctors, I remember telling them that just throw on me anything you have. I have to stay here. My child needs me and my husband. He always forgets that part.
Chris Cahill: In that order. What about you, Jordan? you said you had some trauma from your childhood, but this is a whole other level.
Rathkopfs: I mean, it probably took me about two years to start feeling like I could talk about stuff with anyone about what I was experiencing. But I started going through like really intense emotions that I later found clinical terms for, like anticipatory grief. So I was actually very in a very real way picturing on it as not alive, which then also went towards my parents and other people in my life. And it was just I was almost paralyzed. I was like all of a sudden. I went from a 37 year old kind of going to bars and having a good time and just being like a younger dad to quite literally not knowing if I was gonna have my wife concerned that my parents weren't gonna be here. And I couldn't navigate it very well. eventually I actually did start going for help when I realized it was impacting my ability to be a present caregiver.
Chris Cahill: And I think that's, that's a missing piece because cancer doesn't just affect the patient, right? It affects the family.
Rathkopfs: Yeah.
Chris Cahill: you mentioned you got ⁓ news over the phone. ⁓ did the healthcare system feel most out of sync with the emotional reality and ⁓ you were actually going through?
Rathkopfs: ⁓ I felt the emotional reality. There was no just that two words. ⁓ I felt it was very clinical. I, you know, as a visual person, I felt very disconnected from any visual materials I saw. ⁓ It even went so far that when I got any materials from doctors and I just saw these ⁓ people on the pictures, I wouldn't even open it. because I felt that's not for me. I don't smile. I don't have perfect makeup, you know. Yeah, that's where I felt very disconnected on the emotional level.
Chris Cahill: So when did you decide to pick up a camera?
Rathkopfs: the day after I would say, the day after I heard that I have cancer. We actually had a very quick conversation about it because I think we both needed to come to agreement on how we were going to approach this. ⁓ And so we gave each other consent, And we still, in our practice, think consent is really critical. think... Consent doesn't just mean permission to do it. It also means making sure that people understand the full implications of doing it. That how you feel today, maybe in 10 years, you might feel differently. But we did have that conversation. I think we both realized that we were going to need it more for almost for ourselves, like a therapeutic treatment. than anything, the fact that it became a bigger something was secondary to what we needed it for was really to close that emotional gap that we're talking about where we could already sense that the medical team's calling her on her phone and leaving a brief five minute message about, we already sensed that there was gonna be a lot of problems navigating this with the medical professionals.
Chris Cahill: It's amazing that you started that quickly, given the trauma that you faced, but when you look at some of the images that you guys captured, they're powerful and we're going to include some of them as well. When did you realize this isn't just our story, but this is a pattern of illness?
Rathkopfs: So, interesting, like for me, I felt that it took me longer than for you. I think that you were more public about what we are doing than I was. I think I was just focused on the first phase was like really focusing on taking photos. Yeah, and then ⁓ I just... I personally found it once I started to be public and having women, random women reaching out to me and sending me ⁓ pictures of themselves or taking pictures because of what I did. I think also, ⁓ you know, it's also tricky because interestingly, so Ani has some trouble with her memory from that first year. because of the treatment she was in. So I don't mean to speak for her, I do remember somewhat differently things because I wasn't in chemo and radiation. ⁓ I do remember she was really, as an immigrant, really surprised and shocked about health inequity and that she didn't understand why hospitals had marketing campaigns because in her country they don't do that. And then... having to fill out the insurance forms before even getting seen. This was all just new to her. And I think that's when she started realizing, oh, wow, this system actually can really leave some people behind pretty quickly. almost as soon as she got better, maybe a year and a half later, she really felt strongly about wanting to do a project that would focus on other people who felt unseen and misrepresented or underrepresented in the conversation around cancer. You're right. ⁓ I'm realizing. Yeah.
Chris Cahill: These are the side effects of the drugs and the disease and the care that, and this is why you need caregivers to partner with.
Rathkopfs: Exactly. Yeah. To help you. And that's why I believe so much in ⁓ telling other people's stories because it really validates where you are at the moment. We just feel like we got very lucky in some ways. ⁓ We know we've had many people who haven't been as lucky in our lives. And so when we do these kind of projects, it's really we're always thinking about that. Just like who are the people maybe that... really need to feel seen.
Chris Cahill: So ⁓ long after your diagnosis did the book come to be?
Rathkopfs: Oh, the book that's much longer. That's like, yeah. Now on my, so we were photographing from the day after, right? We still are working on it. We're still working on it. It's like, it feels like this is the milestones that we need to document. But when I was in my five year mark, you know, the mark that everybody measures and I remember doctor telling me, are going to be basically bye bye. We don't want to see you. We hope we don't see you again. Hope. Okay. We hope not to see you ever again. And I suddenly felt panicking. I felt like, why am I going to do? This is so scary. And I came home and I told Jordan that we are going, we have to do something tangible out of that.
Chris Cahill: Tell me more about the panic.
Rathkopfs: ⁓ there was like a full panic mode. I felt like I'm being abandoned. nobody, they don't want to see me again. So who am I going to see? Who is going to help me? ⁓ what if, what if it comes back? Like where is the place that I can turn to if I don't go to my doctor? ⁓ when am going to talk to somebody completely new? Yeah. Yeah.
Chris Cahill: and they probably thought they were helping you.
Rathkopfs: Well, it's funny, you know, it's because like my mom, I remember when she hit her five year mark, she felt cured. She like even like, you know, was, mean, she still would worry every year before her scan. She would be upset. But like she took that five year mark as a really good thing. And then it was interesting to see Ani, this other really critical woman in my life, have very different reaction, which is why I think that it is important that you always realize if you know one patient, you know, one patient and everyone has different, which is why we think it's so important to actually really dig in with people and to better understand like what you're doing now, people's individual truths and how that also other people might be like that too.
Chris Cahill: And when we first met, ⁓ thought you guys were visual storytellers, but you corrected me and said, no, we're human insight experts. ⁓ the audience what that means to you.
Rathkopfs: Thank I mean, so a little bit of my background, which I'm getting into was before doing professionally visual storytelling, I worked a lot in a boutique agency with influencers around social causes. So I always kind of had this feeling of like, are the things that motivate society and culture to actually do things that will make a real change? And then when Ani got sick, was, you know, obviously our careers took a different path and we started thinking about the different ways in which in which maybe we could do that in this world. And so part of the work that we do, think, like, it's part why we use visual storytelling specifically is that, you know, I think 70 % of the population processes information visually. In the United States, we have an average literacy level of third graders. We hear all the time, even from the CDC, nine out of 10 people don't understand medical information that they're being provided. So we do see visual storytelling as the mechanism and the tool that can unlock a lot of feeling of connection and information. However, we see that as the tool. The insights that you get should guide that tool. So for us, it's not about just telling a beautiful story or showing a beautiful story. It's understanding really, where are these gaps? And where are the places where people feel there is misunderstanding and could be better understanding. so once we can uncover and tap into that kind of insight element, that is what we use to fuel the mechanism of how and if we should even turn this to a story. Cause sometimes you don't even necessarily have to, not everything is worth a story. Sometimes it's better to sit on things. And that's why we feel the insight portion is really important. Cause it lets you make more of a strategic decision about. how best to engage publicly.
Chris Cahill: Ana, when you're sitting with a patient or a caregiver now, what do you pay attention to that other people miss?
Rathkopfs: lived experience. Like I just, ⁓ just listened to them and see where their voices hitch. ⁓ And ⁓ that gives me a feeling of, ⁓ this is important Do we want to go there? I also need to ask them, I pay attention to ask them if they're okay with that. because there are certain elements people are trusting us with their deepest fears and the worst parts of their lives. So we need to respect that. If there are certain things that they just don't want to go in, I ask them, are there any places you don't want to go in? Is that too painful? Because I don't want to break people. I want to make sure that I treat them with respect. Well, that's kind of true. That's true. Well, all the respect is true. But we do want to break people in the sense we want to break the barriers that they feel they need to put up to protect themselves. And so it's not about breaking them in a way that like actually is painful. It's actually healing. Because what we have found is like sometimes when we talk to people like, ⁓ my God, I haven't even talked to my therapist about that. I'm just realizing something I've never. That's when you feel like you've really kind of done your job when. And I think the reason that happens is because we do treat people as people and we treat them as collaborators. We don't call them consumers. We don't call them patients even sometimes like we. We're very careful in just kind of treating them as people first. And I do think that that's really helpful in trying to build trust and uncover the stories that you don't know you need to hear rather than just reinforcing constantly the stories you think you need to hear. Yeah. And going back to that, it's interesting because so many people come prepared with their story. They like have like, they know what they want. They are like hitting what they want, what they think that I want to hear. And I have to like, we both have to ask like the questions in between, you know, like they just like zoom through it and you just have to dig deeper. Okay. Even a lot in the patient advocacy space, cause a lot of people are used to this. used to being asked to share their story and there is a certain transactional element to it too. Like they're, being asked to share their story because of certain place sees benefits to them and helping share their story as well.
Chris Cahill: Right.
Rathkopfs: I think sometimes people are a little too coached and a little too rehearsed. And that's what we as storytellers are really careful about and pay attention to is how can we get to those elements that don't feel coached and don't feel rehearsed so that you really feel like you're hearing who this person is.
Chris Cahill: And it sounds like the story comes before the photograph. Is that always the case or?
Rathkopfs: Yeah, usually would say usually, but sometimes it develops through the photo shoot, you know, like our video, like when we ⁓ film people, like sometimes we realize that this after afterwards that we should add something. Yeah, we were doing campaign once with an influencer and she kind of asked us like, OK, so, you know, she started doing smiles and all this happy stuff and like, say, well, what do you guys want from me? Because we weren't really overly directing her. And we're like, we just want you to be yourself. And she started to cry right away. And she's like, no one ever lets me just be myself. I'm an influencer. have to project a certain kind of thing, but it's nice to not have to perform for once.
Chris Cahill: Yeah, I was thinking, you you wonder how many people don't even know what themselves are anymore. But that's where the stories come into play. I think that's how, how you get down to the next level.
Rathkopfs: Yeah, 100 % agree with that.
Chris Cahill: ⁓ in healthcare, you it I hear it all the time, we need to understand our patient's voice. We need to understand our patient's journeys. ⁓ What are people getting wrong around these stories and journeys?
Rathkopfs: I mean, I feel like they're not really treating people as equal partners. That's really the core, I think, that people talk about patients a lot and do invite them sometimes into the process. But very often, I don't think early enough. And with enough actual decision-making trust, like, you we were talking to an agency and we told them that we let these... patients work with us on the video edit in like the back end of the software. And they were shocked. They were like, wow, you trust people to do that? I was like, well, why wouldn't we? They're the ones who lived through it. Like, why should I trust creative directors who don't have lived experience more than people living through it? I think we all work together to create the best version of a story, but not to include the people who actually know from lived experience what they went through is to me just kind of doesn't make sense. And I think that sometimes there is an issue with control. ⁓ People like to, obviously there is a lot of money on table. So you have to be careful. There is compliance, there is all these, all these things, but there is also that human element that sometimes like you don't have to control every single detail. Or that you can control things in a way that still feels emotional and real. So like I think about like sitcom television, right? There's rules. You can't use the seven bad words. You can't show nudity. there's Seinfeld was a great show. Yeah, there's wonderful things that were created with these constraints. So for us, think sometimes maybe I think people are a little too risk adverse because they're so worried. But I think if you just know what the what you have to stay clear of that actually sometimes gives you freedom to be creative and think through how you can express something with those constraints in place.
Chris Cahill: we can't forget that treating people, ⁓ you know, not just just running health care systems or ⁓ selling drugs. There's more it than that.
Rathkopfs: 100%.
Chris Cahill: you talked about, the, ⁓ the agency having bit of an aha moment about, ⁓ having patients help ⁓ it. there another project or a moment you can think of where you just saw a room full of people have some light bulbs go off, ⁓ when they saw a project.
Rathkopfs: Yeah. Well, we just worked on a rare disease project and you know, it's a disease that makes mobility difficult. And I think people are coming from different parts of the country. So some from, you know, Midwest, some from the Northeast. And what I saw was that the disease itself is very alienating in a lot of ways, even within their own family and friends. And there was something about them coming together in this one shared space. for the first time and really talking with each other and collaborating with each other on storytelling about the experience that it just kind of, I don't know if it was an aha moment, it embodied, think the best of what these things can be because it really helped people feel seen. It also helped people find support and it also helped create a message that the campaign had some really good, results in terms of engagement. You know, it's rare disease. So engagement in rare disease is different than in oncology. But that I think that the reason it was received well is because people actually kind of felt like a team together and they felt less alone, even while somehow still feeling like their individual story was being honored.
Chris Cahill: And rare diseases sometimes are even more alienating, you feel like you're totally alone. Very few people go through that. And you know, I love that you've turned your story into a way of making people feel seen. ⁓ You also talked art as medicine. ⁓ I want to into that a little bit more. ⁓ When you say is medicine, what do you mean by that? Like based on ⁓ what you've lived what you've seen, what's the power?
Rathkopfs: we know how much it helped us. ⁓ You when I like look, ⁓ I know that I'm creating at the moment that I'm creating something that will help me five years later. I literally did not know that. And then five years later I would be looking through my work ⁓ and would feel that it's still me. I would be connecting my dots together. I would be connecting the person before, during and after. So I knew how important that was for me. So I know how important it is for everybody else. mean, you know, we see that there are therapies out there that people use ⁓ in addition to chemo and radiation. People use exercise. People use meditation. ⁓ People use journaling. And these are all things that have proven therapeutic effect. I think art is also in that category. And we're seeing that in the neuro arts version in your arts world. And we're seeing doctors starting to prescribe even in certain places art as something. What I love about art is it's available to anyone. You don't have to go through an insurance company for it. You don't have to be approved. You don't have to dig up the costs if it's too expensive. Like you can do it. Anyone has the access to it if they so. so please. And I think that's why it's so important. But then also in the way that you can use it professionally, it also can provide therapeutic effect. For instance, like when our story kind of has spread a bit, we've had people reach out and say, I can't tell you how much it helped me to finally see someone ⁓ and showing the things I feel that I never see anywhere else. ⁓ that's helping me emotionally navigate what I'm going through. So I do think that or it can serve the individual as a form of medicine. And I think it can serve the collective as a form of medicine as well.
Chris Cahill: you Anna, that you something you didn't know it helped you five years later, but there can also be little things that can help you in the moment also, right?
Rathkopfs: ⁓ 100%. Like I remember when I was going through a chemo, I would be like packing my camera and I was thinking about the photo shoot that I'm going to do with myself. I wasn't thinking about the doctor's appointment. So I was putting my brain in a different space. I was in different space. ⁓ So that's yeah, I know that helps. I know people who are writing. And I know how much that helped them to just put their thoughts on the paper because you just want to hear it. You just want to validate what you are going through that it is bad. It can get better. But right now you might feel horrible, but or you might feel great. And it's good to document that. And I mean, when the art, I know people knitting and it helps them and you can create beautiful art knitting.
Chris Cahill: And I saw you, I think it was in the book or it was on the website. You had a mood feeling tracker ⁓ with a reef. ⁓ that was Jordan's, okay. Tell me more about that.
Rathkopfs: Jordan. Also, after, about the first seven months, I started going to therapy. And I just ⁓ partly because of this anticipatory grief and like the feelings were becoming really overpowering. And they introduced me a cognitive behavioral training therapy. And I had never heard of it before. And it was kind of one of the only tools that I found that actually was helping me get through the day. because I was finally able to recognize the thought I was having wasn't necessarily reality. Just because I had the thought and the emotion didn't mean Anna was going to be dead in two years. And so that helped me. mean, I that sounds a little crass, but like that's how intense it Like I was convinced that she was going to be dead in two years, like because my mind was going there and I had no way to navigate it. So using cognitive behavioral therapy really helped me a lot. to kind of break that looping thinking process I was trapping myself in essentially. That goes back to your question when you asked what we didn't want to tell each other or ourselves. So Jordan was not telling me that he thought I'm going to die. I mean, that's part of problem too, and like, the law, but like, this is what happens when you let non-professionals who are really scared go online. So I found like study, was reading studies and I was like, this was nine years ago, there was less information than there is even now, and less even options. And then I just, what I was finding without someone who could actually talk me through it and just left to my own devices, truthfully just terrified me. Like all I knew was her too was an aggressive disease, less you know, at that time perceived as having less survivorship for especially in young women. So everything I was reading was just kind of like I was seeing it through the filter of my own fears because I'm not a doctor, because I'm not a scientist. And so ⁓ that was where I was going. I was going, I was finding the information, but without any professional to help me guide myself in a healthy way through processing it.
Chris Cahill: not only you're seeing it through your fears, you're potentially seeing it through other people's fears as well. So it can compound. It's a double-edged sword because, you know, now there's so much information available that, you can be way more knowledgeable but have to be careful as well ⁓ because Lord only knows what ⁓ you'll find. You got to get it from a reputable source.
Rathkopfs: Especially if you're going to rely on AI, for instance. So I've been doing that too now. I'm not saying I'm above any of this, but AI is in a way made to appease the user. And it's supposed to assuage the user. And in certain settings, that's great. And in others, that's not so great. When you're scared, then you're asking, why am I scared? Yes. I understand you have a fear. It's dangerous situation. But it can also get dangerous when like I was having other health symptoms I was worried about and I was scared to go to a doctor because I kind of was worrying about like, you know, ⁓ my God, what if I have cancer or something? So I went to AI and I kind of kept asking questions until I felt like it was telling me, ⁓ you'll be OK, basically. Like even when I first started, like you should go see a doctor. Like I kept pushing it to like basically try to help analyze it in a way that would make give me some peace. That's kind of dangerous. because I have a sister who's a doctor and like if I call her like with a problem, she's like, go to a doctor. I don't want to give you any advice because you need to get checked out. And if I'm wrong, I don't want the responsibility of having told you it was probably okay and don't get it checked out.
Chris Cahill: ⁓ it's a, it's a good takeaway, Because I think what you're saying is if you're dealing with something, if you're think you're sick, if you're going through something, don't keep it to yourself. ⁓ You talk to other people about it. Talk to a professional about it. Get help.
Rathkopfs: Easier said than done though. And that's why storytelling is so critical in this space because most people want to avoid bad news. Most. mean, like they don't want to find out they may have cancer and like a lot of people will check it out. But most people don't. They really want to just think it's probably nothing. I think if you see stories, though, where someone else kind of thought it was nothing, but it was something and you can kind of, you know, I don't mean that I'm trying to make people scared. by trying to help people understand that it can be anyone. Like one thing about illness is it does not discriminate. It doesn't care how rich you are, how poor you are, what country you're from. And for that reason, I think it's just kind of important to help people see themselves in the possibilities so that they don't just, you know, we had a woman who told us she didn't get checked out for symptoms for two years almost because she only saw older white women. with cancer and she wasn't an older white woman. And ⁓ by the time she got to a doctor, she was diagnosed de novo stage four with a really aggressive form of cancer. And so had she seen people that maybe kind of reminded her more of herself and her community, maybe she would have been more proactive in getting checked out.
Chris Cahill: Jordan, caregivers that feel like they have to be the strong one, what advice would you give?
Rathkopfs: and I think both of us should answer this because I only also became a caregiver, but, know, ⁓ for me, I think the advice I would give to others is try your best to remember that you're important and that you also deserve to be taken care of. I think for myself, at least it was easy to slide into feeling like, who am I? She's the one going through cancer. Like, like I shouldn't at all complain about anything. But the reality was I was under a lot of pressure. I can't compare it to what she was going through, but it still was pressure and it affected me and my well-being very directly. And I don't think I felt I had the right to help myself. So my suggestion to others is I think, ⁓ feel the right to help yourself too. That doesn't mean to prioritize yourself necessarily over the person, but certainly do prioritize yourself. So ⁓ know you want to... me to answer like as a caregiver, for me, ⁓ I think Jordan covered that, but for me, what was very interesting was I remember about two years or a year and a half after the first phone call, we were going through some of the photos and we came across a photo. It's in our book of me and Jordan in a waiting room or at the doctor's office. And I remember that moment. I was goofing around the front of the huge mirror. There were always huge mirrors for whatever reason. to see myself progressing. ⁓ then I saw, but that was the first time when I noticed Jordan, like, I mean, really noticed because he is sitting there with his hat down and all his posture is just so defeated and so scared. And that was the first time that I actually like really, really realized that it's not just my fear, but it's also Jordan's. And for me that photo like symbolizes what people around you go through. because it was so physical, the disease itself is so physical. I was so wrapped up in my ⁓ symptoms and the tiredness, exhaustion, and then seeing the other person was really hard. But I realized that there is another person going through it with you.
Chris Cahill: It's wild that you share that story because I was looking at the website earlier and that photo stuck with me. I know exactly which one you're talking about. So we'll pull that one and show it to people. I didn't understand the context. I just knew he looked miserable.
Rathkopfs: Yeah. Yeah, she was goofing around like she was she was just trying to keep it light for herself. But like I didn't realize she was taking pictures. I was like head down, like just trying to get through through it. And then. Yeah, I mean, that's what's interesting about. You know, documenting each other, you kind of sometimes what you're going through is different. And I remember what Ani said to me was interesting, too, when she became a caregiver more so for her mother. was that she found it much harder to be a caregiver than a patient. And that kind of stuck with me. Yeah. I remember how much I had to, there were a lot of emotions that I had when I was helping mom. ⁓ but I remember how much I had to guess. And I felt like I was guessing all the time. How is she feeling? Is she okay? Is she worse? Is she in pain? How can I help her? Like, how can I appease these symptoms? And It's really hard to ask all those questions all the time because that's where your brain goes once you see the person. Yeah, she told me, know, she knew what the chemo felt like in her body. she kind of had going the person going through it, she actually knew exactly how she was feeling. But for myself, watching from the outside, not that gap between, you we keep saying the word gap, but there is also a patient caregiver gap. between the person receiving some of the care and the person giving some of the care between what they understand about each other's experience. I thought that was interesting that like, I hadn't really thought about that, that like Ani in a way felt more control at times because she knew exactly at least how she felt inside. Whereas the caregiver doesn't always understand how the person they love is feeling, especially when you get into other diseases like with memory and Alzheimer's and things like that.
Chris Cahill: Yeah, yeah, it takes a toll on everyone, not just the patient. So ⁓ if you could go back ⁓ to yourselves on that first day of diagnosis, what would whisper each other's ear? ⁓
Rathkopfs: Well, I would probably, I don't know if I would whisper it to you. I don't mean it that way. Who would you whisper it to? Like myself, I guess. Yeah, it's not nothing against you. I would just tell you to be nicer to yourself and don't take, like if I'm going to give Jordan advice to his past.
Chris Cahill: You
Rathkopfs: I would tell him to be nicer to himself and not to carry everything by yourself because he was very, he was like trying, not trying, he was the solid rock that felt like he's crumbling inside. But for me, he was the wall. And I want him to actually share more of the crumble. because I think that might have helped you ⁓ as a caregiver. like for myself, I would tell myself not to expect that I will be the same person ⁓ coming out of the diagnosis and treatment as I was coming in. Because I remember when my oncologist told me, ⁓ you know, it's going to be tough 12, 13 months. I remember thinking, okay, that's nothing, I can do it. And thinking I will be the same person and not realizing that I will be completely different.
Chris Cahill: Jordan.
Rathkopfs: Man, hers were good. Yeah, I I'm so smart. I mean, guess if I could tell, and the question was what I would say to her, ⁓ I think I would probably say kind of what she's saying to myself. Like, I would just encourage myself to not be afraid to ask for help. And even more importantly, not be afraid to admit I need help.
Chris Cahill: Or do yourself, either way.
Rathkopfs: think it's taken me a long time, like, I don't know, about nine years to fully accept and embrace that, that actually trauma is a real thing and it can affect decisions and can affect a lot of things in your life. And that's important to acknowledge that and do what you, what maybe you can do for yourself to try to admit you need help and get some. then my advice to... Anna, guess, ⁓ I actually wouldn't have. I feel like she handled everything so, I mean, I was so inspired by her even today. I mean, I just don't, I don't know how she did it. I don't know how she does it. Like, I'm always amazed by how she's handled herself. So I don't have anything for her, but definitely for myself.
Chris Cahill: Well, I'm inspired by both of you. mean, the fact that you're telling the stories, but also helping others tell their stories is really making a difference. So I appreciate the time and it's been a great conversation.
Rathkopfs: Thanks Chris, this has been really wonderful. Thanks for having us.
