In this episode of the How We Heal, a podcast collaboration between CaringBridge and End in Mind, host Brigid Bonner and reporter Cathy Wurzer reflect on how CaringBridge user Caroline Wright has found her own path toward healing in cooking, writing and making “meaning” out of a life-changing diagnosis of brain cancer.
Cathy Wurzer (podcast host, Emmy Award-winning journalist, founder of End in Mind, a nonprofit focused on storytelling for every stage of life):
Welcome to How We Heal, a CaringBridge conversation on hope, health and healing.
Brigid Bonner (chief experience officer at CaringBridge): Hello, Cathy, how are you doing today?
Cathy: I’m great. Brigid Bonner, how are you doing?
Brigid: I’m good. I’m so happy to be back here representing CaringBridge, talking with you, and experimenting with our podcast ideas.
Cathy: And for folks who don’t know me, I’m Cathy Wurzer. I’m a broadcast journalist based in St. Paul, Minnesota, founder of the End in Mind Project, and a big fan of the work CaringBridge is doing.
Brigid: Thank you. And so for those who don’t know what CaringBridge is, we’re a social network nonprofit, and we’re dedicated to helping people on health journeys. It’s a tough time, but we’ve found that when people can share their story and connect with people in meaningful ways, the health journey is easier.
Cathy: So this podcast is an experiment really?
Brigid: It is, it is. We have been doing lots of work, Cathy, in exploring the topic of healing. How is it that people can find healing? A couple of years ago, when we were celebrating our 20th anniversary, we put a call out to users of CaringBridge to say, “Can you teach us? Can you help us understand how it is that you get through a health journey?” And so what we’re doing both at CaringBridge, as well as with this podcast. Were experimenting with the idea of how to impart that wisdom and those universal truths, in hopes that other people can find the strength and use those resources to get through a health journey.
Cathy: Now, our first podcast episode was about a gentleman, Michael Bischoff, who had been living with brain cancer for several years. So now I’ve found another wonderful story, and this is a person using CaringBridge. She is an individual who you know well.
Brigid: Oh, my goodness, Caroline Wright is a lovely, talented, capable person. She and her family live in Seattle. I had the opportunity to have dinner with them a while ago. And she’s amazing. She’s an author, she’s a cookbook writer, she is a world traveler. And boy did I learn a lot from her.
Cathy: And as a matter of fact, listeners should look in your kitchen because you may have one of her cookbooks.
Audio From WCCO-TV, the CBS affiliate in the Twin Cities: Today, the author of Cake Magic!: Mix & Match Your Way to 100 Amazing Combinations, will be in Minnesota for an event at Cooks of Crocus Hill. And joining us now is the author Caroline Wright, who sold 6,000 copies in 8 minutes on QVC. That’s impressive. Thank you so much for coming in. So what is it about cakes that really inspires you?
Caroline Wright (wife, mom, cookbook author, CaringBridge user living with brain cancer): Well, I wanted to give no one a reason not to make a homemade cake. So all of the cakes …
Cathy: That was a WCCO-TV interview Caroline Wright did when she was in Minneapolis in 2016. While Caroline was out doing interviews about Cake Magic, she was also working on a third book about Catalan food, which meant she also took numerous trips to Barcelona for research. That’s when she started having what she thought were panic attacks. She was insanely busy at the time. So she figured those panicky feelings made sense. And she was having headaches, so she figured both were just signs of stress. But Caroline wisely went to a doctor to check it out.
Caroline: So the doctor said, “Well, you’re just busy and have a second kid. It seems normal.” So I took all these tests and she said, “Yes, it’s makes sense that you’re having these headaches.” So it was a very close call that she wasn’t going to order an MRI or anything, but then she asked me about the nature of my headaches. I said, “Well, I think they’re migraines. So it’s pain, these big bands of pain.” And also it sounds crazy, but I actually had like this deep laziness feeling in my eye. So I thought it was some sort of detaching retina situation or something. So then the doctor finally said, “Well, there’s too much information here. We just need to see what it is.” I’ve been a stressed out, kind of “silly” person for a very long time, so I just thought that maybe my payment was coming due or something. No, it turns out that I had something super physically wrong.
Caroline: Then they discovered a 7-centimeter brain tumor in my frontal lobe.
Cathy: That’s about the size of a tangerine.
Caroline: Yes, it was very large … it was very large.
Caroline: And the doctor that consulted immediately afterward, he said, “I can’t believe you’re walking and talking.”
Cathy: The tumor was a grade four. And if that wasn’t shock enough, doctors told her she had just a year to live. Caroline was 33 years old at the time.
Caroline: I had pity parties for probably a week afterward, felt horrible. Didn’t know what to do, being given a year to live with two small children and a husband who I love to the end of the Earth. It didn’t make sense. And you feel bad, like, “Why me?” all the natural stuff, obviously. But then I decided, “OK, if I’m given a year to live and these two children who are right in front of me won’t remember the kind of mom I am and the kind of person I am … was I going to choose to lie in bed and feel bad for myself because I’m not going to live to 90 with a glioblastoma? So I said, “I can’t just lie down. I’m going to dance and cook and do everything that I normally do with my kids. If I was going to have any chance of having any memories with them, it’s this. This is all I’ve got.”
Caroline: So it was very big motivator to stop feeling bad for myself, to pick myself up and behave normally, until further notice. It wasn’t like a denial of my situation. It was facing it. I lived two narratives, completely and fully. One was that I was going to die in a year; the other was that I was going to survive and be fine. And again, one was not a denial of the other, it just was just the way that I had to cope with things. So basically I threw myself into these projects for my sons. I wrote a lot for them so that they would know what my fight looked like.
Cathy: It seems like you have actively engaged in healing.
Cathy: I’m curious about the baking part of your life.
Caroline: Oh, yes.
Cathy: You went in the kitchen.
Cathy: I saw the picture of this lovely chocolate birthday cake you baked for your 34th birthday, in 2018. Happy birthday, by the way. Number 35 this year, right?
Caroline: Yes. Absolutely.
Cathy: I mean, the baking seems to be kind of a metaphor for your battle with cancer, in a sense.
Caroline: Totally. So I’ve always been both a cook and a baker. My most popular cookbook was my second book, Cake Magic.
Audio from QVC shopping channel: Now, Caroline Wright is our author. And what’s amazing about this is that Caroline is a trained chef. She is a baker by trade. But she realized that if you could perfect one basic cake mix, one frosting mix and one syrup mix, you could take those plain mixes, add flavors and create 170 cakes, okay. But then, what if you wanted to make that cake recipe cupcakes? You can. What if you wanted to make it a sheet cake? You can. And if you want to make it a layer cake, that same recipe can be made into a layer cake. It’s easy, it’s simple, it’s quick. It’s mix and match. It’s Cake Magic. Let’s welcome, Caroline Wright. Hi there, Caroline.
QVC: Welcome. It’s a pleasure to have you with us.
Caroline: Thank you for having me.
QVC: I love people who are creative in the kitchen, and I love that you have taken your passion for cakes and turned it into an accessible book that can make all of us great bakers. Now tell us about these three mixes. So if you’ve got the three mixes, I could make any cake on the table.
Caroline: Exactly. So if you can make a box mix, you can definitely make all of these cakes.
Cathy: That was from the QVC shopping channel. I don’t think I’ve ever seen a cake book.
Caroline: For me, baking is not only what I do professionally. It’s a deep part of who I am, and always have been.
QVC: This is just perfect. Caroline, what a pleasure to meet you.
Caroline: Thank you.
QVC: Thank you for being here. She’s adorable. I love her.
Caroline: I’ve landed in this funny place. And so for me baking, I still do bake, but it’s like I make really delicious, wonderful things.
Cathy: But it’s literally sweet.
Cathy: A way to kind of seek normalcy.
Cathy: In a life that is not very normal at this time. Right?
Caroline: The thing that people don’t necessarily think about is that the life that you’re fighting for still has celebrations. It still has all the things that led me to baking in the first place. Those same instincts are still there. I’m still the same person. And so you don’t want to deny yourself birthdays and Christmases or whatever it is. All of my celebrations are food rituals. So I had to translate all of my experiences through this new lens. So it was sort of a poetic, metaphorical experience. And now as I write recipes on my blog, this is all happening in front of my kids. This is the food of their childhoods, and so much of it has been informed by my cancer.
Cathy: Tell me about your relationship with your two young sons, because I’ve heard from others who have younger kids who are going through a similar struggle, that there’s “parenting before cancer” and “parenting during cancer.”
Caroline: I don’t think there has been a huge change because we’ve always been really open and honest parents. I know there’s debate as to how to handle telling children about cancer. People choose different paths and I don’t judge them. Theodore was a babe in arms when I was diagnosed. So he’s just growing up with me having MRIs and the maintenance of my cancer situation. It’s just part of the water he swims in. He has really no idea. Well, I mean, I think he does, but not in the same way as my older son, Henry. He remembers me before cancer. We have always been very close, and I was his primary caregiver.
Caroline: For Henry, it was a drastic change. He’s a very aware and very articulate child, so we had to brief him on what was happening. As soon as we found out about the tumor, weird things were starting to happen in his life. Neighbors would come over and help while I was at appointments. And then my parents moved to be closer to us. We combined households and the kids’ lives changed a lot. I guess the biggest parenting change was that our world broadened a lot. Community became a huge piece of it, so that was awesome. We also became comfortable navigating really difficult topics, because talking to your kids about death or your illness has to be an ongoing dialogue.
Caroline: We give them the information they’re capable of hearing at any given time, but then they sit with it. With Henry, it would surface at breakfast: “So, Mom, who is going to take care of me if you die?” You’re just drinking tea and they ask a question like that, so you say to yourself, “OK, so this is what we’re doing right now.” This is when they are ready to talk about it. These conversations never happen when you sit them down in a chair and say, “We’re going to have a serious conversation.” It doesn’t happen like that. Instead, it’s just, “Right now, Mommy doesn’t have cancer in her brain.” Even now, when I have MRIs and they’re clean, I’ll ask if he wants to talk about. And he’ll say, “No, I know you’d tell me if there’s anything to know.” So that’ where he is with it right now.
Cathy: To help her kids, and all kids, navigate the serious illness or impending death of a parent, Caroline wrote a beautifully illustrated children’s book called Lasting Love.
Caroline: I had been looking for books to read to the kids, and I found that talking about death in a metaphorical, “passage-of-seasons” way felt dishonest to me. They know what death is, or the version of how they see it, because we’re talking about it all the time. To put it behind a veil of language felt weird in our house. We also are not particularly religious, so we don’t have any kind of scaffolding for this conversation.
Caroline: Basically, I woke up one day and had this manifestation of a metaphor of the types of conversations I was having with the boys. It was our philosophy, for lack of a better word. It was that Mommy’s love lasts forever, whether or not her body lives. And this creature came to mind. So when a parent is diagnosed with a terminal illness, the hospital sends them home with a magical creature. And I saw this magical creature in the beginning. It’s the outward representation of the dying parent’s love. And then halfway through the book, the mom dies and her ashes are spread and they blow into the creature and then there’s this energetic sort of sharing. And then the creature and the sons do the same things that the mom and the sons did before.
Caroline: So then the creature becomes this sort of metaphor for the process of what the kid is going through. I thought that even if I died, I would want my memory and who I was to be a part of it, too. I would be a source of pain and comfort, which is a hard thing for a mom to think about. Writing the book made me feel some peace with not being able to control what happens to me. I also could put my love in a place that cancer can’t touch. They can’t touch that story, they can’t touch that idea.
Cathy: Clearly, writing and your cooking are two big, big parts of your life that I’m sensing are helping you heal.
Caroline: Absolutely. I wrote all the time. I wrote for my CaringBridge blog, and I wrote every day. Mostly, I was just pondering things. With this idea of “maybe living” or “maybe dying,” I was processing everything as a patient. I knew that my kids, grown-up versions of them, would have questions if they ever got cancer themselves, or if they were going through something hard, or if I died. What did Mom do to fight? Or maybe Mom didn’t try hard enough. Or whatever. I wanted to squash that idea it because it’s so obviously it’s not true. But also I wanted to write out every question they could possibly have, whether it’s, “What was it like for her to go through the radiation experience?” Or, “Was she afraid?” Or, “Why did she go to yoga all that time when we were kids?”
Caroline: I knew cancer was going to be a change for the rest of my life. So I wanted to offer an explanation of that journey, to use that cheesy word. Writing on CaringBridge helped me heal because it provided me the kind of support that was useful to me. I’m a person for whom pity serves no function. When you’re a mom of two kids, with a handsome husband you met when you were 19, and you live in a cute, old house in Seattle, and you have brain cancer, you’re this trope of someone to be pitied, right?
Caroline: I get that’s what I was to some people, in a way. But I was like, “No, no, no, no, no.” This is the thing. When you treat me like I’m dying, I feel like I’m dying. But actually I’m really healthy, living my life. Yes, I have this weird diagnosis, but I don’t have cancer right now. And so I don’t want to look at you and see your feelings about my cancer and then I feel like I need to take care of you. CaringBridge was an awesome place where I could put all of my thoughts and feelings and receive support in a way that felt personal for those providing it. They could know everything that was going on, yet the emotion was still distanced enough that I could process it, like kind of on TV.
Cathy: Right. Alan Seale founded the Center for Transformational Presence. And he says, “Healing is not about being sick and getting well, because that’s curing. To heal is to come to wholeness.” Are you there? Are you getting to that point?
Caroline: I love that idea. I think it’s so true. I feel healthier and more present in my body, in my skin, than I did before my diagnosis. I feel grateful and I taste food differently than I did before. So yes, if there’s a possibility of arriving at a better version of myself, cancer definitely did make that possible. And it made me more present, even with the silly things with kids in diapers and whatever that I was in the thick of. It was still like, “Nope, this is life. This is the life that I’m fighting for and it’s beautiful and difficult, and that’s what it is.” CaringBridge specifically brought me into a different place of writing. Before cancer, I was a cookbook author who wrote recipes and yes, I’ve always been a writer. But I never identified with that as a form of communication.
Caroline: I just saw the full breadth of what was possible for connecting with people and telling my story. But there was also this beautiful process of telling my story the way I wanted to tell it, people bringing it into their hearts and finding the strength that they have inside of them. Like really finding this way of truly connecting with people. It’s such an honor and I’d never had that. As a cookbook author, yes, people would make my recipes and bring it to their tables, which is very, very personal, too. But this was just my words and my thoughts. It’s different and very beautiful and I’m very grateful for that. So to answer your question, I feel that cancer is a horrible thing to go through. I would never probably choose it, obviously, but that it chose me has made my life more profound and beautiful and deep than it ever was before. And I’m very grateful for that.
Cathy: And you’re in remission.
Caroline: I don’t seem to use that word.
Caroline: Right now, I am cancer free. I actually asked my doctor why they don’t use the word “remission” with glioblastoma. Maybe it has a 100% recurrence rate? But I’ve had clean scans since my surgery. So I live in a place of real gratitude knowing that every day is such a gift and not assuming that it’s forever. I still imagine being at my kids’ weddings and stuff. I still do see far in the future. I didn’t always, when I first got sick. It felt very possible things might end fairly soon. I was making wills and imagining what the actual mechanics of passing would be. I’m not in that place anymore, but it’s still possible.
Cathy: In the back of your mind, do you worry about recurrence? Or do you just not even think about it?
Caroline: I can’t say I don’t worry about it at all, because it’s a real thing. But I really don’t think about it. I don’t get “scanxiety” that some people get. I respect that is a real thing, and I understand how people feel it. But I just choose not to live that way. I always reframe things. I’m very grateful that I got a primary brain tumor because it makes it harder for it to spread other places. I’ve had a lot of friends who have harder cancers. With my brain cancer, I had a crazy surgery. But there are no nerve endings in your brain, so I wasn’t in pain after the tumor was removed.
Caroline: I reframe the way I think about scans. I think, “Well, if I had a tumor re-growing, wouldn’t I want to know about it as soon as possible? So aren’t MRIs a great tool? Shouldn’t I look forward to going to them so that I have a check-in with this possibility in my body?” I don’t see them as scary, I see them as really helpful things. I don’t know, maybe that’s too Pollyanna. But that’s how I really think, I really do.
Cathy: As a cookbook author, is there a recipe that you would give a person who’s just been diagnosed, metaphorically?
Caroline: So a life recipe! I guess step one would be to show real kindness to yourself. I’m a person who had been having headaches all the time, but I just kept going. I should have been kinder to myself and listened to my body more clearly. The answers are there, if you really quiet your life down and shut down the chatter and let your body do some talking. If you really listen, it will tell you things it has been trying to scream at you. My body had to grow a cancer to get the message across. So for me, quieting my life down and paying attention to that voice was the first thing.
Caroline: Food was a manifestation of that. And then just silly things, obvious things, drinking more water, getting more sleep, moving your body in kind, gentle ways, going for walks, doing yoga, surrounding yourself with people you love. And also, most importantly, maybe a step one is to find ways to be you and not just a patient. For me, that was writing. For me, that was food. But every person has their own relationship to their cancer and their own things that work for their bodies. I think that it is just about finding ways to be really you and finding places where cancer can’t touch.
Cathy: I love that. I’m going to leave that right there. Caroline, I wish you all the very best in your life. Thank you so much.
Caroline: Thank you for having me.
Cathy: So Brigid, it’s clear that Caroline Wright’s healing journey involves to a large extent, writing. I mean, that’s what she said. That’s what really helped her. And she said she was especially helped by the supportive online community that CaringBridge fosters.
Brigid: Yes, definitely, she said that. And as we look at all of the information and wisdom that so many of our users, like Caroline, have provided us, we’ve tried to amass that knowledge into sort of a simple framework. A simple framework for healing that people can cling on to. And it really has three simple tenants, Cathy. It’s really around “believing,” which is faith and spirituality. Secondly, it’s around “belonging,” which is really around family and friends. And we can see, we heard from Caroline how important her family and friends were. And the third one is around “being.” It’s meaning-making, it’s finding your sense of purpose, finding your sense of peace. And with Caroline and all of her journaling and writing and sharing, boy, did she find meaning, did she find a new purpose and a peace of mind.
Cathy: I want to focus in on the connection that Caroline felt as she was writing on her CaringBridge blog, and then also the other writing that she did. So I went out and I spoke with our mutual friend, Dr. Mary Jo Kreitzer. She’s the head of the University of Minnesota’s Earl E. Bakken Center for Spirituality & Healing, about the importance of connection and community when someone’s ill.
Cathy: And Mary Jo told me about the incredible research being done into some 50 million CaringBridge journals.
Brigid: Yes. And of course those are depersonalized, to protect privacy. No names, no identifying details. But there is just mounds of information around what is it that people write about. How do they lower their stress? What happens to them on a health journey if they can do some simple interventions or practices? Like a gratitude practice. We’ve seen that if you can do some expressive writing and if you have simple little practices you can do, you can really reduce your stress. You can increase your sense of empowerment as you go through a health journey. It’s remarkable and we love working with this research collaborative.
Cathy: Here’s Dr. Kreitzer.
Mary Jo Kreitzer (PhD, RN, FAAN and founder and director of the Earl E. Bakken Center for Spirituality and Healing at the University of Minnesota):
So it’s actually a very exciting collaboration, our partnership with CaringBridge. We have pulled together a team that includes computer scientists and nurses and faculty from the Earl E. Bakken Center for Spirituality & Healing. And we’re looking at all kinds of questions. One of the areas of study is what’s the pattern of how a CaringBridge Journal evolves? And are there things that could be done to enhance the effectiveness of how people interact and how frequently they interact and does that influence the life history of the site? I’m really interested in where there are other enhancements that can be done on a CaringBridge site? We’ve done two studies, one study of gratitude and the other study of loving kindness meditation.
Dr. Kreitzer: We gave CaringBridge users an opportunity to participate in the study. And we were really interested in whether simple practices, like gratitude, reduce stress. Do they improve quality of life and wellbeing? Do they help people connect? Does it increase a sense of social support and connection? So it’s fun. We have faculty involved in doing research. We also have students, both undergraduate and graduate students.
Cathy: Have you had any early “a-ha” moments when you’re looking at some of the journals, especially when it comes to connection?
Dr. Kreitzer: Well, I think Cathy, some of the most powerful research has been the reading of journals. And so that’s a type of qualitative research. And I would say two things that I’ve observed, not only in our formal research studies, but also over time: 1.) For some people, writing on CaringBridge is in itself incredibly powerful and healing; and 2.) The support they get from others. And so is the sort of share deep things about their life or deep struggles or insights, and then they hear from people that’s healing.
Dr. Kreitzer: But I have to say, I have been equally moved sometimes as I have read powerful CaringBridge entries, to see the impact that has on all the people reading it. It’s such generosity. I think that it is so generous how people will share their stories and share their lives the way they do on CaringBridge. And oftentimes, I think as I read those, and I think this is true of others, it kind of prompts me to think about questions in my own life and to think differently. So we know there’s lots and lots of research on the importance of social support. So as human beings, we innately are drawn to need deep human connections with other people.
Brigid: Mary Jo has been such a huge contributor, as has the University of Minnesota. And we have other subject matter experts, too, and we are so excited to bring their knowledge and their wisdom and how they help us define sort of, to use a Caroline term, a “recipe.” A recipe for success in mobilizing through a health journey. We are super-excited to bring that knowledge provided that of course, people want to hear about it.
Cathy: I think people want to hear about this, really. I think I feel we’ve opened a door and I hope listeners feel the same way. So we’re really curious about what you think of what we’re doing here.
Brigid: Yes. And keeping in mind that at CaringBridge.org we have so much content … helpful information and articles. And the experiment here with the podcast is sometimes it’s just easier when you’re in your car driving around to listen. But please send us your feedback, send us emails or Tweets or posts to caringbridge.org. We’re hungry for the knowledge to help more people on health journeys.
Cathy: I’ve had a great time doing this, Brigid. Thank you so much.
Brigid: Thank you, Cathy. This has been a blast. Have a great day.
Cathy: You, too.
Cathy: We all learn from stories. I love this quote from Parker Palmer that I want to leave with you: “When you share your story of struggle, you offer me companionship in mine, and that is the most powerful soul medicine I know.” That’s Parker Palmer. That has been How We Heal, a CaringBridge conversation on hope, health and healing. Thanks to Palisade Productions and editor Jennilee Park, for crafting this episode. For more information on the work being done by CaringBridge, please visit the How We Heal series.
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