In this episode, I’m talking to Karen Barrow, a New York Times journalist who has put together a truly unique and inspiring project to tell the story of what happens when the treatment ends. This book should be on every cancer patient’s coffee table for those dark times when you don’t know if there’s a light at the end of all this… Stay strong, you can get through it! Here’s what we talk about in this interview:
- Why survivor stories make you feel less alone
- The universal emotions through cancer we all can relate to
- The importance of seeing the light at the end of the tunnel
- How you deal with cancer is a choice
- Why some people reject the term “survivor”
- The naturally occurring shift in priorities when you get cancer
Joe: Hey, this is Joe Bakhmoutski and welcome to Simplify Cancer podcast. Today, we’re going to hear from Karen Barrow, who’s put together this incredible, this inspiration books called: Picture Your Life After Cancer. It’s really amazing and I hope you check it out. Let’s get into it. Karen, thank you so much for doing this. I really appreciate your time.
Karen: No problem.
Joe: Karen, your book puts cancer in a really different light. I guess in many ways, people find positives, a new appreciation of life, is that something that you expected?
Karen: Just a little background, we stated Picture Your Life After Cancer online, as a digital project, in 2010. It was primarily a way of collecting images of people who were dealing with cancer, who considered themselves after cancer. After cancer for a lot of people could be after diagnosis, or after treatment, or after cure, or after accepting death or a relevant death. I didn’t really know what I would get. It was amazing to see the percentage of stories that came in, that were very positive and that were stories of people who found spins to put on their experiences that helped them appreciate life more, helped them appreciate friends and family more, and help them appreciate their own health more.
Joe: Absolutely, because it’s given – I’ve seen a lot of books and I’ve tried to find a lot of resources online, offline and everywhere. I think your book really captures a voice that is missing, a voice that hasn’t been heard before. Do you feel that voice is heard out in the greater community, like do people have maybe a better sense of what cancer is about? I know it started as an online project and turned into a book later, do you think people have a better sense of what it’s like?
Karen: I think within the book, people can find stories that they relate to, and that helps them feel less alone in the process of going through cancer, because if you’re going through treatment, it’s very individualized, it’s very specific to you, the kind of cancer you have, the treatments you’re choosing, how you’re choosing to deal with side-effects, but the impact it has on your mental psyche and your family and your friends is more universal than I think people realize. If you go through the book and you read stories from other people, you’ll find some that you have nothing in common with, but you’ll find plenty that resonate with you and it makes your experience feel less unique and, in that way, easier to understand.
Joe: Yes, absolutely, because I find when I was going through it, I remember that there wasn’t really much out there that is positive, because there is a lot of academic resources and there are a lot of biographies and things like that. There really isn’t anything that is positive, that is in the title of your book, Picture Your Life After Cancer. You can say, “Wow, I’m going through all of this horrible stuff right now, but there’s a light at the end of the tunnel and I know that there’s going to be a positive after that.”
Karen: Yes, well, I, personally, haven’t gone through a cancer experience, thank goodness. I think that’s true. I think it’s true of any chronic illness, when you’re dealing with it, it’s very easy to get stuck in the tunnel, like, this is my life, it’s never going to end, I don’t see what’s going to happen afterwards. It’s helps to hear from other people, from regular people who don’t necessarily have a book deal and can get their biographic written or tell their stories about what it’s like on the other side. I hope it gives people something to aim for in the process.
Joe: Yes, absolutely. In the introduction of the book, you say that the stories are told about new adventures, new milestones, the new-found happiness, but also loss and sadness and confusion. Are these emotions, are they universal, do you think?
Karen: I think they’re very universal. I think for all the people who tell the positive stories, they survived cancer and they went on a trip to Paris to celebrate or they got married, or they found some happiness in the end, I’m sure there was sadness also built into that. It’s a very complicated, emotional thing to go through. People can choose to take which side of it they want to, a lot of people told very positive stories, a lot of people told very sad stories, a lot of people lost their way as a result of cancer. They were religious before and they just decided they didn’t believe in god anymore, because it just didn’t fit with their experiences anymore and they were sad as a result. There was a depression as a result of cancer. It’s a very multi-faceted outcome. I think what I’ve learned is that a lot of it has to do with how you choose to perceive the experience.
Joe: Yes, that’s pretty amazing, that you say it’s about a choice. The choice that you can choose to be positive and that you can choose to aim for something better and be a better person. You can choose to pull yourself out. Did you have that feedback, that for most people, having that light at the end of the tunnel, having something to look forward to, is that something that would keep them going?
Karen: I think so. A lot of people, if you flick through the book, you see pictures of friends and family, children, spouses, relatives and for a lot of people, it’s that that kept them going. There are even a lot of pictures with people with their cats, dogs especially. Just knowing that there was somebody or something to live for and to suffer through the hardships of treatment for made it worthwhile for them.
Joe: Yes, absolutely, even personally, I used all of this visualization myself, just thinking about it, I had a picture of my son, and when I would be going through treatment, without physical, I would carry it in my hand and with the drip with the chemo stuff, that I would have this mental image of him. That would really give me this positive rush to keep going. I think that’s what a book like that does and that’s what positive stories do from your family, from friends, but also from people you don’t k now. I had your book lying down there on my coffee table and there would be times when I would just pick it up and open it and look at it, at other people. Even complete strangers gave me a sense of hey, I’m not alone here.
Karen: Yes, it could be nursing staff that helps you get through it, it could be a religious community or your neighbors. It’s very easy to feel alone when you’re the one getting chemo therapy in the hospital and going all the time for that and just getting lost in the process. Finding a human connection can help pull you out of that funk, too.
Joe: Did you have a sense that people have met connections with medical staff, with oncologists, nurses, were those stories coming through?
Karen: Yes, there were a handful of people. Those stories we selected for the book were just a small piece of the number we got online. There were plenty of people writing thank you notes to their doctors, especially to their nurses and to the caregivers in their lives, whether their loved ones or hired help. In times of need, those are the people who help lift you through it.
Joe: Yes, absolutely. Karen, I was really struck by a quote, that sharing stories is really a reminder that we’re not alone. It’s simple but an elusive truth. Was it something that you were thinking of when you started this project?
Karen: Yes, a lot of my work that I do, I started as a health reporter. As a digital producer, I did a lot of work thinking about evergreen stories, because everything you put on the internet lasts forever. I like the idea of telling stories, like you said, are just as relevant now as they could be in ten years. Research studies are important, and the medical community are making great strides in finding new treatments and evolving medical care and cancer care. The human stories don’t really change. I’ve done several projects on chronic diseases and people telling stories of chronic diseases.
I find that the themes aren’t very different from one disease to the other. Sure, the hardships are different, whether you’re dealing with arthritis or you’re dealing with cancer or you’re dealing with Alzheimer’s, how you adapt is very different. Underlying all of that, it comes down to how do you move from day-to-day with a chronic illness? How do you mentally let yourself move past the fact that you’re sick and live life?
Joe: Absolutely. Karen, what were some of the things that people say that help them on this journey? With dealing with chronic diseases, with cancer particularly, what were some of the things that helped them through the emotional journey?
Karen: A lot of it is really putting a positive attitude on, even when you’re upset and down in the dumps and feeling sorry for yourself, is finding a way to get out of that. Even if it’s – some people have hobbies. I’ve met a couple of younger people who would play video games and lose themselves in that when they’re feeling upset. It’s wonderful, they have a place to forget for a few minutes that they’re not well. A lot of people have hobbies and interests that they found ways of adapting their abilities to continue doing.
I interviewed a few comedians who’ve had illnesses and they just find ways to make fun of themselves for what they’re going through. That’s obviously not for everybody. For them, laughing at themselves helps them get through it. If you’re determined to find a coping mechanism, there are ways of putting positive spins on what you’re going through or merely putting aside the fact that you’re sick and trying to forget about it for a little while can help your psyche for a little while.
Joe: Exactly. It’s not really a glamorous experience. It’s made up of all these little moments, like waiting for your next oncologist appointment, or not knowing how the treatments worked, or being around people who cared about you, playing video games, doing the new standup comedy routine. People have an entirely different perception of it, just if you read blogs online or if people talk about this heroic survival, how do people reconcile the fact that it’s really not about that. When people go through cancer, you don’t feel like a hero, you feel like a regular person who’s just trying to make it through to the next milestone.
Karen: Yes, a lot of people I’ve found reject the word “survivor”. They feel like it’s too heroic of a title. Nobody asks to have cancer, nobody chose to have cancer, they just got it and they figured out how to deal with it. For a certain portion of the community, they appreciate the term survivor because they did go through it and come out the other side. A lot of people, they don’t like that title because it’s just like, this was the hand I was dealt, and I figured out how to play the cards. It’s not that I’m a survivor, hopefully anybody else given the same deck of cards would figure out how to get through it, as well.
Joe: Also, survivor implies powerlessness in a way. That also could have negative connotations, as well, for your self-image, right?
Karen: Yes, you’re in control to a degree but you’re not in control to a degree. If you didn’t survive cancer, whose fault is it? It’s not really your fault, right, because the cancer was too aggressive, or the treatments didn’t work, or it was caught too late. It wasn’t as a result of something you personally did wrong. That’s another good point, yes.
Joe: Karen, there were so many amazing stories that went into the book. You were selecting things from a myriad of stories that you had online. That must have been a really difficult process. How did you choose what goes in there?
Karen: It was very challenging, the book itself was photo-driven, we started with the best photos and the photos that captured the stories that were being told. Then secondarily, I wanted to make sure there was a variety, so a variety of ages and races and genders and experiences and positive stories and negative stories and people who lived and people who didn’t live and people talking about relatives versus people talking about themselves. It was important to me to show that range of people who told their stories and hope that it represented the range of reality of the people out there dealing with this.
Joe: A bit of it goes back to the same theme that it’s universal, that everyone goes through it, no matter who you are, your age, where you live, your ethnicity, your religion, it’s down to human experience, it’s down to the individual.
Karen: Yes, and I wanted people to flick through the book and maybe see a face that looked familiar or maybe see a story that read familiar, or maybe saw a picture that appealed to them. Everyone has different tastes and interests and diversity. I wanted to make sure that that mix was included.
Joe: Absolutely. From personal experience, Karen, I can really say that life after cancer will never be the same. That also makes me reassess my life before cancer and really start looking at things in a different light. Is that something that is common, in your opinion?
Karen: Yes, a lot of people talk about a shift in priorities, and how things that were once so important to them just feel petty now. Maybe they were caught up in work and they were busy all the time with work and they did their work to the sacrifice of their family. Then they went through this experience and they realized that it just doesn’t matter at the end of the day and the loved ones are the ones that appreciate them. Or vice versa, frankly, if you had a poor relationship with a spouse. There were stories of people who said, “I went through cancer and I realized it’s not worth suffering with a spouse that doesn’t treat me appropriately.
I ended the relationship and I wanted to concentrate on me and live a happy life.” It definitely, in many cases, it led to a shift in priorities and a shift in values. Some people found religion, some people lost religion. Some people had new motivation to run a marathon, run a triathlon, travel the world, climb a mountain, just to be able to check that off their box. I think, in general, people just have a better appreciation for the days that they’re given. They realize that time is fleeting.
Joe: Yes, time is fleeting. That’s a crucial thing, when we talk about fleeting time, do people talk about the fact that they need to do more with that time, how do people talk about time?
Karen: They want to appreciate it, they want to appreciate it more and they want to make sure that they’re spending their time on the things that are meaningful to them. For some people, that’s lazing around on the couch with their family and just hanging out, for some people, that’s checking off their bucket list and making sure they accomplish everything they want to accomplish. For some people, that’s training for marathons and running and getting in the best physical health and hopefully extend that life. For some, it’s not. Everybody values time a little differently. Some people are just trying to figure out what to do with their time that they’re given now.
Joe: Absolutely. Karen, we touched on some stereotypes because there are so many stereotypes, like fighting cancer with your boxing gloves on, that survivors are heroes or that cancer is a death sentence. A lot of these stereotypes are simplistic and, in many cases, they’re not true. Fighting presumes, like what we just talked about, that fighting presumes that you can win just because of your mental toughness and willpower. Do you think these attitudes are changing in the society, with all of your work at the New York Times, is that changing at all, do you think?
Karen: I think so, I think people are a little more sensitive to the fact that cancer to a degree feels random. Obviously, there are things to raise your risk of various cancers but at the end of the day, who gets it and who doesn’t get it, it’s unclear why to a certain degree. While treatments are getting better, they’re not perfect, there’s no cure, so you don’t want to blame the individual if they don’t successfully make it through treatment, because that’s not necessarily their fault. If they follow their doctors’ orders and they get all the treatments that were prescribed for them, that’s not their fault if it didn’t work, it’s medicine’s fault.
Joe: Yes, absolutely. Is there a sense of the stories that people want to tell in the media, is there a difference in how people want to talk about cancer survivors? Are people specifically going through treatment right now? Do these stories, is that a voice that is heard enough in the greater community?
Karen: I don’t know, I think that people would want to be able to tell their stories. I think people want to be able to tell stories that relate to them without being put in a box and without being lumped in with cancer survivors or they’re battling cancer, or they’ve failed treatment. Everybody’s an individual and every story is unique. I think the people who want to share their stories want to make sure that their voices are heard.
Joe: Do you think that those voices, those stories, are they being heard by government organizations, medical specialists? Are these stories something that gets incorporated into healthcare, into wellness, that side of things?
Karen: I think more and more so. I think the medical community is realizing the importance of treating the whole person and not just the disease. You can see that through support groups and the fact that doctors might connect somebody who’s newly diagnosed with somebody who has already had the diagnosis. That’s happening more and more, so that they have a mentor or somebody to help steer them through the decisions that they’re going to have to make and the process.
I think social workers, for sure, understand that concept, that we’re not treating a disease, we’re treating a person. That person has a family and that person has a life, and those people want to do specific things. Treatment decisions are made knowing that. If something is going to effect you one way, but that way it’s going to effect you might hurt you emotionally more than some other thing, that might be part of the decision-making process for treatment.
Joe: Absolutely. Now, more people are living after cancer than ever before. It’s great news. Many folks have different needs in terms of adjusting to life and to hopefully avoid some late effects and some side-effects, as well. When it comes to our media and our community at large, how do they see cancer survivors?
Karen: I think the people who know people who have gone through it are more sympathetic or more understanding than the people who don’t. I think the stereotypes, unfortunately, still exist I think people who haven’t had to deal with the experience first-hand, like, the only thing they have to reference are those stereotypes, or the stories they’ve read of famous people dealing with their illnesses. It’s a little bit like anything else, it’s hard to know what you don’t know. People who just haven’t experienced it, I don’t think they can fully understand what the experience is like.
Joe: Yes, it’s so difficult, isn’t it? Yes, like you say, to relate to something you don’t know.
Joe: Karen, you have a blog on wellness, how did that come about? What would you say are the three big takeaways about healthy living that you can share?
Karen: The blog is called: Well. It’s a vertical of the New York Times, it’s certainly not my blog. What Well focuses on is personal health. We’ve broken personal health down into five pillars of mind, body, food, fitness, and family. We consider those the five pillars of personal health. The whole concept of the blog is the small changes that you can make in your life to improve it. Whether that’s just knowing that drinking a glass of chocolate milk after a run is probably the best thing to do to prevent soreness versus how to deal with your spouse, versus finding somebody to relate to after a cancer experience, Well is devoted to helping people just live better lives day-to-day outside of the medical office.
Joe: What were some of the specific takeaways that you found that could really help someone to help deal with cancer or to just live a healthier life?
Karen: I think some of the most surprising things for me are always the mental angle, because mind is so important in your health and the importance of whether it’s meditation or self-reflection or just sitting in a quiet room just taking a few moments and stopping and thinking and trying to change your attitude and things like that, like, how important the mind is to your body. We keep saying, your cancer experience could be happy or sad and it’s just a matter of the spin you put on it. The people who have a positive attitude, they’re making an effort to do that. Just being able to do that is important to your health.
Joe: Karen, I’m a big fan of self-help because I believe that this is one of the things that, in terms of mental health, that really doesn’t get as much attention that it actually deserves. How much of the articles that you see and some of the things that you put together, how much of that is something that people can really put to practice in their daily life?
Karen: The majority of things that we put out on Well are things that you can put out into practice. There are a lot of fitness tips, there are a lot of mental wellbeing tips, and there are a lot of food tips, and relationship tips. That’s your everyday life. You wake up, you say hi to your spouse, you say hi to your kids, you go to work, you have lunch, you come home and exercise or you don’t, and you come home grumpy, you come home happy. Every day, these are these little small things that you decide to do that could affect your overall health. Do you sit at your desk for five hours’ straight? Or do you get up every 20 minutes and take a walk? Very simple things that we can suggest for you to do to help improve your overall health.
Joe: That’s fantastic. Karen, if someone wanted to check out your book or your other work, like the Well blog or your articles, what would they do?
Karen: Picture Your Life After Cancer is available on Amazon. You can also see it online if you go to newyorktimes.com/pictureyourlife. That’s where the digital version of it is. You can also just Google Karen Barrow. You’ll see other work that I’ve done.
Joe: Fantastic. Thanks so much, Karen.
Karen: Thank you.