STEPHANIE MEYERS: Hi and welcome to Eating With Cancer, a podcast about how food and eating experiences are impacted by cancer. Where we sit down to candid conversations and explore integrative approaches to finding joy with food. I'm your host, Stephanie Meyers, a registered dietitian and the nutrition manager in the Zakim Center for Integrative Therapies and Healthy Living at Dana-Farber Cancer Institute in Boston.

And I am delighted to have with me as guests today -- Laurie, a Dana-Farber patient whose story highlights the complexities of how food and self-care care intersect – and Julie Salinger, a clinical social worker with more than 12 years of experience helping patients and families navigate a cancer diagnosis, treatment, and recovery. So thank you both for being with me today.

We are talking today about how a cancer diagnosis can sometimes make people feel afraid or worried about certain foods. I mean, things that come to mind for me as a dietitian, people ask about whether or not they can eat sugar or soy or red meat or dairy, and cancer diagnoses is actually a time when many people decide to change how they eat.

They might change how they eat to try to enhance treatment outcomes, keep their body or immune system strong, and hopefully curtail their risk of progression. And I know I don't need to tell you both that there is an overwhelming amount of information out there about what to eat and what to avoid. And a lot of that information, there's varying degrees of scientific validity.

So today we are actually not talking specifically about the answers, the cut and dried answers, which there often aren't any, to be frank, about foods we've mentioned so far. So we're not going to focus on whether or not sugar feeds cancer, for example, or whether or not you should eat or avoid soy. But we're actually going to talk about how you work with those fears and worries in your day to day life.

Certainly, if you have questions about whether or not those foods are appropriate for you or not, we're going to share resources. We have plenty of them available for people on our online platform, MyZakim. For listeners who are really tuned in just for that information, where you can find us is at myzakim.dana-farber.org. But in addition to that, I think if you are facing those questions, if you do feel that uncertainty in your day to day living, going through your cancer journey, we want to really try to dive in today to “how do we deal with that?”

You know, how do you go through the day making your breakfast wondering and worrying about whether or not what you're eating is, quote unquote, okay. And what are those fears like for you personally? So we have a person who's job, Julie's job, as a therapist to sort of help people navigate that. And Laurie, whose lived experience really speaks to how those issues can come up.

And so I guess I'd like us to begin, Laurie, just asking you to share a little bit about your story, how this has impacted you in your life.

LAURIE: Okay. Hi, Stephanie. My story goes back about 20 years when I was diagnosed with MS. So for the past 20 years, I have had to learn to adjust and live with the fear of what might happen or what might not happen. And then certainly go through times where you question, did I do something? Am I eating the wrong thing? This, that or the other thing?

And then in the summer of 2020, I was diagnosed with a disease called HLH, which essentially is basically your entire system just shutting down on its own, and I was hospitalized for almost three months, treated with high dose steroids, chemotherapy, and just all sorts of other stuff to essentially just try to keep me alive while they figured out what to do with me.

And so at that point, I was so ill that, you know, what I was eating on a day to day basis was not as much of a fear as just trying to get through each day. That being said, being on those extremely high dose steroids does make you hungry. So I can remember one time at lunch I ate, I don't eat normally like this,

I ate three chicken breasts, something else ,and dessert. And I was fine. I was not overly stuffed. And sometimes you just have to realize you're doing the best you can at the moment. Subsequently, I went up to Dana-Farber in September of 2020 and have had a bone marrow transplant. So I've been recovering from that for the past year, and trying to understand and learn what my body needs nutritionally, and what I can do to help feel good and to be as healthy as I can.

And as you mentioned, with other people with cancer diagnoses and other diagnoses, you do live with the fear of -- am I doing something to bring this on myself? Or is there something I can do to do a better job? But sometimes you, just as I said, you just have to do the best you can.

STEPHANIE: I'm appreciating what you said, Laurie, and really the sort of complexity, the different things you were contending with over decades of time. I'm imagining some of our listeners having also not only a cancer diagnosis, but other considerations, other factors in their life that play into how they choose and what they choose to eat. And I'm struck by the fact that with all of these things going on and all of the things you're balancing, there can still be this sort of tiny voice in the back of your mind saying, “Will this really hurt? Would this really help? Should I eat this? Should I not?”

And I'm actually curious, Julie, in your experience as a therapist, how common is this? How often do you see the fear and worry about food in the midst of a cancer diagnosis?

JULIE SALINGER: Well, thanks for having me, first of all. And Laurie, thank you so much for being here and for letting us hear a little about you and for being willing to take a risk and talk about some of these things. It makes such a difference for people to hear other people's stories and, you know, validated. I hear this kind of story a lot when it comes to having a new diagnosis of a serious illness and a feeling of the loss of control.

What happens with a cancer diagnosis for many people is this feeling that they've just lost control of everything. It comes out of nowhere. They often feel fine. You didn't feel fine, Laurie, obviously, right? But many people do. And there it is. It's like what has happened to me? And there is often this sense of questioning of how did I get this thing? How did this happen to me? What caused it? So there's a loss, a sense of loss of control. And “how did I get it,” right? Patients often feel betrayed by their bodies, and they feel very disappointed in themselves. Often it sort of goes inward. “What did I do?”

And what I know about working with patients who have serious illnesses, is that patients want an explanation for why this happened. It's really helpful. It's calming somehow to be able to say, “Oh, okay, now I get it. I get why I got this.” And so if they can find a reason, it really helps. And that's where food can often come into the picture, because food is something that someone can point to and say, “Aha, I think this happened because I did this, this, and this.”

So it comes from a desire to have an explanation. Number one. Sort of a tendency for self-blame that people have often, especially when they feel guilty about their illnesses and so forth. And then it's also, and this is the biggest part of this, a place where you can take control. You can take control in a situation where you have lost control.

And so what I see from people is sometimes it's absolutely immediate. Okay, I've lost all control. I know what I'm going to do now. I am going to become vegan. I am going to stop eating…. It isn't always that extreme, but it's often, you know, I am changing everything. That's what I'm going to do. I'm starting chemotherapy and I'm changing everything.

And you know, what these feelings can do is cause healthy changes, but it can also cause very extreme changes that are based in what people have read on the Internet, what all their kind hearted, well-meaning friends and family have told them about what to eat. And there's a pressure often to do this and also to regain some power.

You mentioned the idea of uncertainty, of sort of living with this sort of uncertainty that comes with all of this, that you don't know what it is, and the idea of trying to add some certainty in by saying, I'm going to do something that I understand is really good for you. And, you know, one of the things that I learned early on in my career was how important it is for people to try to balance reality with their feelings and with help and with a sense of what’s all around them.

And I’ve run groups where people come in and talk about how they're managing their cancer. They say they now run this amount of miles a day, and they've done this and that, and they're vegan now. And then generally speaking, there's two or three people in the group who raise their hands and say, “Guess what? I have exactly what you have, and I've been vegan for 25 years.”

And there's nothing wrong with being vegan. It's great if that's what you want to do. There's nothing wrong with any changes if it feels good to you. But if it feels constricting and it feels like this isn't really how I like to live, the idea of basing your decision on what you think is a medical fact, isn’t, and we don't unfortunately have those links other than healthy eating and all the things that Stephanie can talk about way better than I can. This is an emotional response. It isn't a response based in reality.

STEPHANIE: And I want to pick up on that, because really the emphasis today is that when you're having those feelings, right, the feelings of stress, the feelings of pressure, the confusion, these feelings that are very uncomfortable – and you really spoke well to that – it comes down to this place of uncertainty. Like all these thoughts can actually show up in the day to day, moment to moment experience for a person who is doing their very best to eat while they're going through cancer treatment and recovery.

And so I really would love to have us today – for our listeners – hear from each of you the very specific ways you addressed.. Laurie, in your experience of going through HLH, having had MS, being in the hospital for three months at the height of a global pandemic, you know, what specific things did you do to help you deal with those fears and worries and that pressure and stress?

LAURIE: Well, one of the things I found very helpful was I started doing some guided meditations and it would help me get my mind in the moment, because when you're in the hospital, one thing I experienced is that there is no time that ever goes by more slowly than being in the hospital and how just being in the moment was helpful with that.

Thinking through what I might like to eat… I think to Julie's point, having some kind of control or feeling of control – whether you actually control what you eat or not – having a feeling that that is something you can make a positive choice and effect a good change is helpful. But I did find meditation was quite helpful for me. I also found I had a lot of lovely connections with friends and family, even though I couldn't see them who would text me. And that's something that I think can help people so much. Just to know other people are thinking about you and I have learned over the last 20 years that it's very helpful to let people reach out and support you when you're going through a difficult thing. And that's not always easy.

STEPHANIE: Laurie, can I ask, did you in your hospitalization or any point along your treatment in recovery, did you have an opportunity to speak with someone about your feelings around food, that sort of, this notion that there may be some stress or pressure, some internal angst, built up around food. So did you have a chance to talk with anybody about that?

LAURIE: Not really because at the point I was in the hospital for those three months, I think the primary goal was trying to keep me alive. And the steroid doses that I had pretty much made my whole thinking revolve around when the next meal was coming, what I was going to eat, you know, and could I get the milkshake at five in the morning so I can make it to breakfast type of thing?

And that's not my usual mode of operation. And one thing I did do, Stephanie, that was helpful, was I did not, when I was in the hospital, search all over the Internet for information because that can get you going down a black hole. And that's a difficult place to be emotionally when you're struggling.

STEPHANIE: Julie, I'd love to have you sort of chime in on that. So this notion of getting online to look when you're having fears, worries, doubts. What are your thoughts on that, Julie, as a therapist?

JULIE: Well, seeking extra support, if you can. Now sure if you’re in isolation in the hospital, that's much harder to do. But for those who have the ability to seek support, to try to put words to the feelings, rather than sort of immediately jump down certain paths. Assuming that say, you know, overhauling eating is absolutely the way to go right this minute. To sort of be able to just sit down with someone and say, “I'm very anxious. I want to take control. I feel out of control.” And to be able to have a place to voice that and talk with some objective parties. So I think, you know, that's a really important part.

The Internet is generally not the place to go at all. It only feeds concerns. There are some sites that are better than others. I'm sure that Stephanie has some sites in her bibliography and so forth to recommend that are places that are okay to look. But by and large, it only feeds concerns and it feeds the emotional aspect of things. So I think for people to be able to sort of back up and ask for support and one thing I'd like to comment on if I could, is that I really like Laurie's description of how she had to manage her cravings and incredible appetite while she was in the hospital and going through her treatment.

And she's not questioning herself. She's not saying, “Oh, that was terrible. And I worried about my weight every second, and that I was going to gain this or that,” You know, she had medication, it made her feel a certain way. And food, you know, she had to deal with that for that moment. Or it wasn't a moment, it was a lot longer than that! And I think for cancer patients going through treatment, that's a really good lesson. Because often there's a big pressure cancer patients will put on themselves when they're going through treatment – that they've got to be really, really careful even during treatment. You know, there's during treatment and after treatment. But I have people who say, “Well all I want to do when I go home from chemo is, I want to eat this and I want to eat that, but I know I can't. And I shouldn't eat it and I shouldn't eat that.”

And there is a part of you having to compartmentalize and say, “This is where I am now. I need to eat more toast now than eating tofu. You know, I need to have macaroni and cheese, even though it’s maybe not the best thing. And someone's bringing me bone broth every afternoon and saying I should eat the bone broth.”

And, you know, it's not to say that there aren't good things to add into your diet over time, but there's a sort of immediacy of what you allow yourself when you're going through something that's going to have, you know, an end to it. You know and it may not have an end, in that you may be on chemo forever, but there are compartments of it where there are weeks where you are going to do what you need to do for comfort and so forth. But then there are other times where you can do something different. So there is that piece that I wanted to just notice about Laurie.

LAURIE: Well, Julie, to that point, I was back home for about six or seven weeks in between being in the hospital and then going up to Dana-Farber. And I don't know if I had said during that time, I was so sick. The only thing I could move were my arms too. I was not able to walk or do anything to take care of myself. And now I can do all of that. But I don't know if it was because of the steroids or what, but every single night I had to have a grilled cheese appetizer sandwich before dinner just to get me through to dinner. And it was okay!

STEPHANIE: Laurie, you have said this to me before – that one of the things you learned to do when you practiced your meditations and you were in the moment was to give yourself permission to take food day by day, meal by meal. I remember being so struck when you said that. That that was how you approached it. Day by day, meal by meal. And I don’t know if there's more you want to say about that.

LAURIE: Well, I think you're right. And sometimes what happens is when you are in the hospital or undergoing chemo or different treatments, you don't really know what you're going to want to eat for the next meal. And you just have to take it as it comes and just as you said, take the pressure away from yourself to try to get that piece of the puzzle just right. Because your body's healing and it needs time to fight what's going on and heal. And sometimes you need the grilled cheese or sometimes you need the Hershey's Kisses.

STEPHANIE: Yes, yes. And you know, Julie, you and I have talked before about the whole idea of cancer treatment. You taught me this – the whole idea of cancer treatment is to live well. And I wonder if you could just paint that broad brush stroke for us now as it pertains to fear and worry about food.

JULIE: Yeah, well, I often say to people, you know, you had treatment so that you could live, you could have your life, and you could be embracing and living the way you want to. And so the idea of denying yourself so many things is not really living. And what that means is different for everybody. You know, for some people denying, you know, they think, “I want to have sugar. I'm not going to have sugar. It's no big deal.” You know, that's fine. But when I talk with someone who says, “I really wanted that cake, I wanted to eat that piece of cake.” And you say, “And why didn’t you eat that piece of cake?” And then they say, “Because I can imagine the sugar sort of heading towards that extra cell that was left in my body and making it grow into a recurrence.”

And then that's when you sort of talk about, you know, sort of how what they're imagining is something pretty unrealistic, emotional. Do they want to eat cake every day? Maybe not. Maybe not. Do they want to have it sometimes because they want it? Then they do. Otherwise, what was the point of all of this? To live, you know, to sort of deny yourself and live in this place of feeling unhappy?

And it is, again, different for everyone. For some people, it's easy to do all that, and they’re fine and they feel good about it. For other people, it's too important to them. Food in their culture is too important, and they're not going to just eat vegetables all day. They just can't do it.

STEPHANIE: Yeah, I also want to just name that, for listeners, that the idea that there would ever be a time when fear and worry around food would just disappear, would just go away, is probably not realistic, right? It’s likely that the conversation that Laurie and Julie and I are having right now is the kind of conversation you might revisit in your own mind, in your own life, on a sort of ongoing basis as you go through cancer treatment and survivorship. And the themes and the takeaways that I'm hearing from each of you feel really important. And I just want to sort of summarize those now.

And so when fear and worry arise for you, what can you actually do? You can learn to practice being in the moment, right? Meal by meal. You can connect with others, talk with others about how you're feeling – the stress, the pressure, the worry. Maybe it's the friends and family who are near you. Maybe it's a therapist, a professional who can – and I hope that it actually will be – at least both of those things. So you can actually find a way to take that fear, worry, and angst and have it not impede your ability to find joy and pleasure with food. And, of course, as a registered dietitian and nutritionist specializing in oncology, I want to really also encourage listeners that that's another avenue. That's another tool in your toolkit.

Ask for support on your team that includes a registered dietitian who specializes in oncology who can help guide you and interpret what the research and evidence suggest, and give you a sense of how that is or is not relevant to you personally. So those are some of the very specific things that you can do. And I'm curious if there's anything, Laurie or Julie, you feel like we've left out today. For the person who's feeling afraid or anxious or worried about food, is there anything else you'd like them to know from your experience?

JULIE: Well, I'll say that I'm glad you just mentioned that last piece. Of course, you know, I probably should have said it sooner, but since I work in a cancer institute… When people are really struggling with food and worried and think they caused their cancer and really struggling with all of that sort of thing, I absolutely immediately say, “Let's get one of our wonderful dietitians involved.” Because, well, patients will often be quoting the Internet, they'll be looking through their books kindhearted friends have given them about how if they eat this and that, and so on, then they won't get cancer again or, you know, all sorts of things. And I say, “You know, we have incredibly wonderful people here and I want you to hear it from them. I don't want you to just hear it from me because I'm working with your emotions. I want you to hear know what we know so far about food and cancer so that you can take those facts and use them in your life.”

STEPHANIE: Yeah, so true. I love what you just said, Julie. So people can understand that if they're having these fears and worries, they are not alone. This is a very common response and that finding someone on your team who can help you work with the emotions and the feelings is one piece. And having a separate person, again, a credentialed provider who can give you some evidence to help you make decisions that are personally relevant, that's another piece. Laurie, was there anything else you wanted to add?

LAURIE: I was just going to tag on with what Julie said, that I did find it so incredibly helpful to have the support of the different teams that were in the hospital and people who could help me and be part of the group. And for people to try to be – even if this isn't your normal way of doing things – to be open to the help because the expertise and knowledge that you get from these various people, whether it's a dietitian or a social worker, can give you such comfort to deal with what you have to deal with, and help give you more of a sense of peace with it.

STEPHANIE: Laurie, thank you for that. The peace that that I think people are craving, right, as they go through this, some sense of ease and peace and steadiness. And I guess for people who are still really searching, looking online, wanting some resources, of course, we invite you to MyZakim, which is the online space where we host live and on-demand programs that are open to everyone.

Some of the things you'll find there are mindfulness meditation, cooking demonstrations, strength training, yoga, qigong, really a whole assortment of things open to everyone. And of course, with even additional programs and classes available for Dana-Farber patients, caregivers and staff. So for more information on that, please visit us at myzakim.dana-farber.org.

And I just want to close today by saying thank you. My most sincere thanks, Laurie and Julie, for sharing your experiences and your wisdom with us. Thank you also to each person listening right now. I'm Stephanie Meyers with the Zakim Center at Dana-Farber Cancer Institute. Until next time, be well.