The Emotional Journey of a Caregiver with Jordan Rathkopf

Meet Jordan

Jordan Rathkopf is a husband and a father. His wife, Anna, was diagnosed with breast cancer, after finding a lump on her 37th birthday.

Anna documented her journey through the “HER2: An intimate breast cancer experience” photography project to help process the experience and to raise awareness of the specific challenges younger people face from cancer diagnosis through treatment.

Jordan is half of “RATHKOPF” photography team with Anna. They specialize in brand narrative and reportage for client campaigns, focusing on community and environment, documenting the moments when connections are made.

Jordan, a former media relations specialist, grew up in Brooklyn, where he learned to connect with people from all walks of life and developed an eye for symmetry and hidden charm. He finds that as different as people are, they’re still mostly the same: They want to be understood, they like a good story, and most can be disarmed with an unexpected compliment.


Adam: (00:00)
Hello and welcome to Real Pink. Today, we are going to talk about the emotional journey of the caregiver. So as with any illness, breast cancer can have far reaching effects beyond the person who is diagnosed. Partners may feel many of the same emotions as the person diagnosed shock sadness, fear, anger, and denial, family and friends can be strong sources of support throughout the diagnosis, treatment and recovery. At the same time, loved ones, especially spouses partners, and children may also need social support. We had the pleasure of speaking with his wife, Anna last week on the show. And today we are happy to welcome Jordan Rathkopf to share his family’s experience from his perspective, Jordan, welcome to the show.

Jordan: (00:44)
Hi Adam. Thank you so much.

Adam: (00:46)
Good to talk to you really enjoyed chatting with Anna last week, and I’m really excited to hear your perspective this week. So let’s just start there. Tell us a little bit about yourself and how breast cancer has been a part of your life.

Jordan: (01:00)
Sure. So I’m from Brooklyn, born and raised, still living there. I met Annie about 15, 16 years ago in Czech Republic where she’s from. And I was working back then as an English teacher and, uh, we met and the rest was history and you know, my, experience with breast cancer actually started when I was young. My mother was diagnosed when I was around 11 years old, 11, 12. And that was kinda my first experience with breast cancer. And then Ani was diagnosed almost four years ago. And you know, it was a, I think kind of my mother’s diagnosis. I don’t think I ever fully realized how much he had weighed on me until I was getting older. And then when Annie got sick, it was kind of, it all came together and I just kind of felt like my worlds were unfortunately starting to come together in ways I hadn’t anticipated.

Adam: (01:58)
Yeah. Wow. And so I know, you know, you were her primary caregiver, your wife, not your mother, right. You were a primary caregiver. Talk about the kind of support that you found yourself needing as you were going through that process. And how were you able to?

Jordan: (02:13)
Yeah, I mean, I was early on, I was really worried about myself cause I have really, uh, I had problems in my life dealing with anxiety and depression. You know, I’ve had spells where, you know, sometimes I will have to deal with anxiety and when she got diagnosed, I was actually, it was a good period for me. And then as soon as I heard that she was diagnosed, I knew I was going to have a real problem. You know, uncertainty is something I’ve always struggled with. And when we found out it was just a, it’s just a nightmare. Really. I just, I knew instantly I was going to be struggling. I, you know, those first few weeks, I didn’t really know what to do for help. Right. When she was diagnosed, I was looking online. I was Googling things and trying to find forums and photo essays, people on YouTube, anything I could just, for some information, some kind of comfort.

Jordan: (03:05)
And I actually went to our social worker at my wife’s hospital here in New York. And I told her, you know, uh, like to talk to you, I really we’d really like to see is there someone we could speak to for our mental health? And she was kind of directing it towards Ani. I was like, no, it’s actually for me, I need it. And she’s made, you know, it’s, I’m so happy. You’re being honest and direct with me. And I’m sorry though, but there’s not that much. I can point you to, in terms of men. Wow. You said they often, she finds it. It is hard that men to discuss openly kind of the fear they’re experiencing the anxiety. You know, we had a young son at the time. He was three. And I just remember all of a sudden, I’m thinking, am I going to be a single father now?

Jordan: (03:49)
Like, am I, is that what I’m going to deal with now? It’s like, I’m a single dad and that would create a lot of anxiety for me and I just needed help. And so I started, I found a therapist and started going to therapy and specifically it was called cognitive behavior therapy. And the idea was that rather than delving too much into your past or your family life or anything like that, you kind of focus on your feelings. Now, the things you said to yourself right before you started to feel that way and to try to create a little bit of distance between the things we may say to us, ourselves and the feelings we may be experiencing. And that was really helpful for me because what I didn’t realize was that I was actually making myself much more nervous and much more freaked out because of the things I was saying to myself, like you’re going to be a single dad, those ideas, there was no proof of it.

Jordan: (04:44)
Right. But I was convincing myself of it emotionally because I was telling myself these things. And so it took a lot of work for about two years with this therapist, really. I had to work on a regular basis to just try to find a way to process feeling separately from thoughts. Right. Yeah. Wow. That’s amazing. Um, I’m really glad you’re able to find that support and, and really thankful. You’re able to share that here with us and thank you for doing that. So let’s, let’s talk for a minute about the care that you gave to your wife. What did it mean for you to be able to care for her during those vulnerable moments? You know, it’s funny. I don’t know that I felt like a caregiver. I don’t know what I felt like, but, you know, cause she was taking, I, she was just so I was so impressed by her, throughout everything, just her, how she handled everything.

Jordan: (05:32)
So I never felt like I was really getting her care even if maybe we were, but it was really hard to watch her in the state she was in. Cause it just got worse and worse. Yeah. Not knowing how to help her sometimes made it worse for me wanting to protect her and wanting to take care of her and realizing how much it was. Kind of felt out of my control. Right. What was hard? You know, what I tried to do was I try to never her with my stuff. I had a lot of things going on in my head, a lot of issues with work. This had an impact on a lot of aspects of our life, but I had to try to do my best was find a way to make her feel safe and to not really show her. So I’d go to my car and cry.

Jordan: (06:14)
Like if I felt like I had to cry, I would never do it in front of her. I would never do it in front of our son. I was really worried. I was really worried about our son too. I didn’t want him to experience this. So I was, in some ways I was more worried about being his caregiver than hers because I felt like she was so on top of it. And she was doing, she was just taking care of herself so much, but I felt like someone really had to take care of our son because she had to be separated because of a treatment. You know, he was in school, he was sick every week. So, you know, they were for three months, we had to really keep them pretty much away from each other a lot. I had to be his rock. Yeah. I think that’s how I was trying to help her the most was making sure he was okay. Because I knew that for her, that was what she was the most worried about was was him.

Adam: (07:02)
Yeah. So let’s talk just a little bit about, about that. I mean, you were, you were balancing work, you’re balancing caring for your wife and now you’re, as you just said that you’re the rock for your young son. Can you share just a little bit about how, how did you handle that or any tips you’d have for other parents that are trying to handle that? Similarly?

Jordan: (07:19)
I mean, my tips would be just no matter what’s going on, try to find a way that they feel safe. You know, they don’t understand what’s happening, even if you told them, I’m not sure they would understand. It was interesting. We actually, uh, he loved this book Babar. Do you know the book?

Adam: (07:34)
Oh yeah, yeah I do.

Jordan: (07:36)
So we had this book and we read it and in the story, there’s the scene where like the King gets poisoned by a mushroom and we read it one time and you know, he didn’t seem to care. And then a week later this was all during her treatment. Apparently she’s reading the book and he was really upset and she told me about it. I was like, Oh no, he loves this book. And I got to the page and he had a freak out like a meltdown. He just like never before had he acted like that. It never since. And he just had meltdown and he was like, well the elephant sick, like mommy, I realized in that moment how much he actually probably was observing things and how much it might have been affecting him on a subconscious level. And so for us, that became a really important thing that we try to protect him. And so my advice is just always keep that in your mind as hard as it may be. Cause it’s hard. Even if you don’t realize that it’s hard sometimes to notice what they might be experiencing and you have to be really sensitive to that, I think for their wellbeing.

Adam: (08:37)
Yeah. No that’s good advice. And I think kids perceive far more than we usually give them credit for myself. Certainly included in that. So, so let’s go back just for a moment back to the diagnosis, that’s obviously a very difficult thing to process. Were you able to process that process immediately? Did it take some time to come to terms with that? I know that you sought some counseling, is it as it’s related to that? Just tell us a little bit more about that.

Jordan: (09:03)
Yeah. The diagnosis was, was bad. I dunno. The first day when we found out she actually couldn’t reach me. So she had been trying to tell me for like an hour or something. I was at work and by the time I got her on the phone, she was like really hysterical because she had had an hour basically of not being able to even reach me and having to kind of deal with it herself. And so she was really, by the time I heard her and it was bad, I just heard her voice. You know, our doctors had originally thought that she didn’t have cancer. They had, she had gone through a screening and they, someone said something like, Oh, well we won’t know until they get the results back in the next day or two, but I think you can sleep easy you stuff along those lines.

Jordan: (09:46)
And so we kind of felt like we dodged the bullet they were, and then it actually came back you as cancer. And I think partly it was worse because of that too. Cause we really kind of had thought we had dodged it. And so we were dealing with that. And then once I started researching is when it got really bad. Like that was a mistake, like start to start reading on my own without, you know, I just got obsessive about it and just started reading more and more and try to educate ourselves as quickly as possible. Something that was very hard for us was that we were hoping to have a second child right before she was diagnosed. And so when she was diagnosed, it became clear very quickly that that conversation was going to have to happen. Now, are we going to try to preserve eggs or not? It was intense. I mean, you know, just having to make all these decisions without knowing anything like you, you’re a normal person. And now the next day you’re supposed to be a doctor who understands, you know, all the implications of a disease and its treatment. And that was really hard. I mean, that was just a very difficult period because you’re reading and you’re trying to find all this information out, but you have no experience with this. You don’t know what any of this stuff means.

Adam: (11:03)
Yeah. Wow. That’s really, really tough. So last question. What advice can you give our listeners about things you learned through your journey that helped you cope things that you think might be helpful for others?

Jordan: (11:17)
I think what would be helpful is to try to remember that you’re not alone. We are interconnected that what happens to one of us affects all of us in some capacity and that we have to – as much as possible – make sure that we’re taking care of ourselves, especially from the caretaker or co survivor perspective. It’s, you know, I couldn’t be much good to her or my family or my son, if I was going to be having anxiety attacks, I kind of felt like looking at her, inspire me. I was like if she can do what she’s doing, I can do, I’m doing right. Another tip. Just try to enjoy each other as much as you can. Don’t take it for granted. Appreciate what you have. You know, I, I do feel like a little bit, I was angry at myself for a period of time. Cause I felt like I had taken so much for granted. I felt like I really didn’t appreciate things the way I should have. And so in a weird way, this experience helped me recalibrate a lot in terms of priorities and what moving forward I need to be doing to make sure I’m maximizing life because you never know what it’ll happen,

Adam: (12:28)
Man. That’s really good advice for all of us, honestly, to not, to not take things for granted and to truly take the time to appreciate the things that we have because to your point, we’re not guaranteed anything. Um, so, uh, that’s really, really great advice. Jordan, this has been great. Thank you for your time. Thank you for sharing your life. Thank you. Thank your wife for sharing her story with us from last week as well. And we’ll look forward to hearing back from you again sometime soon.

About This Episode

Intro and outro music is City Sunshine by Kevin MacLeod. Ad music is Trusted Advertising by David Renda licensed from Fesliyan Studios Inc.