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STEPHANIE MEYERS: Hi and welcome to Eating with Cancer, a podcast about how food and eating are impacted by cancer. Where we sit down to candid conversations and seek 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'm honored to have with me today my guests, Jessica – a Dana-Farber patient whose experiences bring to light common issues people face with food and eating during cancer treatment – and Dan Gorman, a nurse practitioner and the Director of the Palliative Care Clinic at Dana-Farber. Thank you both for joining me today. Our focus today is how cancer and cancer treatment impact how you experience food and eating.

And Jessica, I know this is all too real for you right now. So I'd love to just sort of invite you first to share what's been happening for you lately with food.

JESSICA: What is happening right now with food is… um… unfortunately, I am no longer on my first line of treatment. And through each line of treatment there's different things that you can and cannot eat just because of the interactions or possible interactions with the drugs.

And I say that to say the first medication I was on, there was an absolutely no grapefruit rule. Like I could not have grapefruit. And that was interesting because when I was told I couldn't have grapefruit, all of a sudden, I wanted nothing more than just to eat grapefruit. Which I had to again say, like “scale back here a second,” because realistically, I may have eaten like two or three grapefruits a year.

Albeit I really liked to eat the grapefruit, but it wasn't something I went out of my way for. But because I was told, “don’t eat it,” then I was just like, “I really want to eat it.” Another line of treatment, a possible side effect could be blood sugar and high blood sugar. So self-admittedly, I’ve always had a sweet tooth, and I decided that my best way to gear up to start that treatment was to binge eat all the sugar I could before I had to kind of monitor and watch that.

And I know that's not a good thing to do. It's not the right thing to do. And I tell others listening, like, ‘don't do that!” But it was right around the time of my daughter's birthday, and I kind of had it in my mind the picture of her with her first birthday and that classic cake smash where she had her own little cake for herself.

And we just had pictures taken of her just really going at that personal cake. And I just imagined myself with that birthday cake and just like double fisting, eating that cake, faceplanting that cake, just to get in all the sugar I can before I had to kind of be cautious. And I know that's super ridiculous, but that's just kind of, again, the mind is a powerful thing, and where it took me.

I just recently started a new treatment and there's not restrictions or concerns with what I eat want in terms of interactions. However, what I’ve found is – it's always been a weird place for me and food during each of these treatments and how it's going to affect my body or affect like my appetite or my desire for food.

And with this one, after treatment, I can't say I was really nauseous, but I felt kind of queasy and that queasy would come on and off. And at times, it was as simple as a smell of food, or looking at food, and sometimes just thinking of food. Um, just being offered something like, “you should probably eat, you want this or this?” And it would just be like a churning of the stomach kind of a feeling. But that only really lasted a few days after my first treatment.

And today it’s been about a week since my last treatment, and I'm back to normal eating and really enjoying what I'm eating today.

STEPHANIE MEYERS: Yeah. Jessica, I want to just highlight what you're saying, which is that each of the different treatments that you described for us just now, had a different sort of… I'm using your term “weird place” with food, instead of a different sort of thing that came up for you.

And one of the other things that… So first of all, I just want to name that. I think that for listeners is that this is a really common problem. Right? This is a… Yeah, Dan, is there anything you want to add?

DAN GORMAN: Yeah, there's so much… I was thinking as she was talking that there's so much to kind of unpack and add.

So first of all, I think food is, you know, it's not just the eating. The food is associated with events. So she beautifully described her one year old's birthday and the cake and like just picturing herself eating that cake. And I think that's often what food means to people. It's not just eating; it's the celebration of that with family, friends.

I had a patient once. This always stuck with me. Years ago, he was really struggling with his eating. And I said that it must be tough not being able to kind of go out and eat like he used to. And he said, well, it's not even the eating. It was the socialization, the being with my family, the fact that we went to a restaurant. It wasn't just the food. It was the event of being together as a family. And that aspect of it. And frankly, everything sort of changes when you can't go and enjoy a meal. It's really tough to sort of be in that moment. So that’s another sort of piece of this. And I just wanted to mention it, and Jessica probably can relate to that.

The other thing I want to say is, it's very common with certain chemotherapies and treatments that smells or visualization of certain foods can be very off-putting. And it's hard to really tell someone how to navigate that except to say if there is something that really is off-putting, stay away from that. And gravitate to sort of what you like, assuming you're not getting an aversion to that.

And also try not to put pressure on yourself to sit down and say, okay, I normally can eat a big piece of lasagna. I want to eat that lasagna, but I don't feel like it. I don't feel good. My family wants me to eat. That's another big thing here, is families want you to eat. And we tell people, look, if you like the lasagna, have a couple of bites of the lasagna. If you like, you know, graze a little bit, snack a little bit.

It's not realistic to think you're sitting down and you're going to be able to consume that whole plate. And I think sometimes sharing that with your loved ones is really helpful to say, “Look, I'm probably not going to want to eat exactly how I did before. Be patient with me because it's not you. It's not your cooking. It's… it just doesn't have the same appeal for me right now.” Does that sort of make sense?

STEPHANIE MEYERS: As a dietitian, it resonates with everything I hear. And, Jessica, from your perspective, I'd love to invite your thoughts there.

JESSICA: Absolutely. That one hundred percent really nails that kind of relationship with food and even an appetite, and just letting people know, communicating with your loved one. For me, my husband. And you know, he would offer me food, but he never forced the issue. He would say, “You know, maybe you should try eating. Would you like to try this or would you like to try that?” And sometimes I would say, “You know what, I'm going to give this a try, or yeah, that really sounds good.”

And other times I would just, you know, have an open, honest conversation and say, “You know what, right now I am not feeling anything.” And he was really respectful of that and just offered, but also gave me my space and understood where I might be with, you know, how I was feeling or eating or not eating. So having that conversation and keeping your loved ones informed and, you know, just opening yourself up. Knowing that, you know, I didn't fear offending my husband or upsetting my husband. And he did the same. He always just kind of offered because of love. Right. Of love. And he wants to take care of me out of love. But he would never be like, “Here, eat this.” Or with a spoon in his hand, “Open your mouth.”

But he was always just kind of looking out, like, “Do you want to try something? Is there anything I can maybe give for you or make for you? Anything I can buy for you that you might be kind of interested in?”

DAN GORMAN: You know, it's interesting. She said, you know, “out of love,” and I think in many cultures, right, food is an expression of love. Love is an expression through food. And in some cultures, right, eating is like, “I want to feed you.” That's how I want to show you I care and love you. And it can be sort of difficult for family members too, who want to see you eat and want to express their love and concern and affection through food.

So I think, again, the communication is helpful so that they also can understand – it’s not you! It's just where I’m at. And what I can do and what I can eat.

STEPHANIE MEYERS: Absolutely. I couldn't agree more, Dan. I think for the caregivers, care partners, friends, family, support network of patients who are listening right now; just what Dan and Jessica are saying is that the love, the intent, the inspiration for why you're in the kitchen making a beautiful, wonderful meal that smells great to you… It's not anything against you that sometimes those things are just not something a person is able to put down during treatment.

In fact, I have many clients over the years who will come to the family table, even though their loved one has chosen a smaller plate and put a smaller portion of lasagna for them, their decision making around what works for them is to not even bother with trying to eat at those moments, but to come with a cup of tea. Or anything that makes them feel like they're participatory or allows them to feel participatory without necessarily having to do with the food, if it's if it's really difficult at that time.

DAN GORMAN: Yeah, I agree. I think the experience of mealtime and family time and gathering is still important, even if you can't participate in what is prepared.

STEPHANIE MEYERS: Yeah.

DAN GORMAN: You know, just being there with a cup of tea, maybe, you know, maybe they are eating a big meal, but, you know, you're in the mood for a half a tuna sandwich that's okay.

STEPHANIE MEYERS: Yeah! Yes, exactly. Exactly.

DAN GORMAN: As long as you're sort of participating.

STEPHANIE MEYERS: I also wanted to just back up to that conversation that Jessica, you brought up. That imagery of you and your daughter, her one-year birthday, and the notion that there is like a good or right. And I just wanted to speak to that because it really is at the heart of sort of what we're about on this particular podcast; is how can you, as an eater in the midst of cancer, maintain that sense of joy? You know, you described sort of double fisting it, getting into that cake with your daughter. Not omitting that moment from your life for the fear that it could, you know, “sugar is a bad thing for you.” This is really you being empowered to continue making decisions about your eating life that bring you joy, that bring you delight.

And that's something when we talk today about, how do you find joy? How do you reclaim delight at the table if you can't look at food, if food smells awful to you, if thinking of food, just the notion of thinking of food is difficult? So I actually want to have us transition to that now for listeners and family members who are really in the thick of it right now with these challenges with food.

What are some of the things that you would recommend – Dan, we can start with you – for patients and care providers? You've mentioned a lot of them. If you want to sort of summarize, what are the things you think people should be thinking about if they're struggling with food right now? What's important?

DAN GORMAN: Well, you know, certainly staying with more, you know, blander type things that are not going to invoke a real like aversion, if you will. You know, often avoiding very spicy things or very high fat things, which, you know, for folks who are really experiencing nausea or, you know, maybe prone to more constipation or things like that, certain foods can make that worse. So kind of staying more neutral. Again the real take home, and we say this in oncology all the time, is smaller, more frequent.

So kind of snacking, kind of grazing. Small things. Keep something in your stomach. But, you know, to sit down and eat a big meal is probably not realistic. Supplement if you need to supplement. Some people do enjoy taking smoothies or things that can also be good with protein and calories and just an easy way to get something in and that's fine.

Some people say that's filling and they feel very full. I will say there are sometimes medications we think about to help people if they're having early satiety, for example, or they feel very full. Sometimes there's medications that we can use that help with a little bit of nausea, but also help with gastric emptying, such as reglan or Metoclopramide. So I often will use that with patients who say, you know, “I take three bites and I am full.” So we think about that.

Sometimes people who are on steroids, low dose steroids. Maybe someone's on dexamethasone as part of their regimen or someone just has no appetite. There are medications we use to help stimulate appetite. Sometimes steroids can be used. We're very careful about use of steroids long term. We have to think about the medications that they're on, the chemotherapy. Are they on immunotherapy? Things like that.

STEPHANIE MEYERS: And I'll just offer as well that again, the theme around what Dan is saying is that the more open and willing you are to talk with your provider about your direct experiences with food, hopefully the more help you'll get, the more direction and guidance they can offer you. So there's no reason to not ask these questions, right, to the best of your ability? And as Jessica said, if you're able to bring a care partner along with you to help sort of think of where the questions might want to go or need to go, and also just hear the message. There really are options out there that we can use medically as well as options like we've already described. You know, working with an oncology specialist in the nutrition field who can help you modify food, meals, recipe ideas, not just for their nutritional content, but with your enjoyment preferences as might in mind.

So, Jessica, I'm curious, as you live this day-to-day going through difficulties and challenges with food. What is something you would recommend? What's your advice for our listeners?

JESSICA: So first, I would give the disclaimer that everybody is different. We don't all have the same background or the same goals or the same interests. So finding what works and what's best and what's comfortable for each individual. For me, I feel like often the stages of grief are talked about like a clean cycle. For me, it was the stages of grief or rather the stages of processing my diagnosis and my prognosis.

And I'm a very visual person. So for me, I pictured it as a ball of yarn. The cycle, you know, is wound up like a ball of yarn, like just tight, clean, and you go just around and around. But my stages of processing, as I call it, was more like the remnants left after a cat had gotten hold of that ball of yarn. There were just frayed strands going this way and that way and back again, some of them torn in pieces.

And that was the place where I decided I just really needed to give myself grace and not grief. Because I really had to climb and scratch and crawl out of that darkness of diagnosis because I felt that I deserved better. And more importantly for me, I also felt that my husband and my children deserved better than that darkness of diagnosis.

So giving grace and not grief was really understanding that the stages of processing, although it was messy and… different moments, I don’t even say different days, sometimes it was just moments within the days would look different. Just giving yourself grace and not grief, and having the flexibility and understanding that sometimes what works might not always work, or sometimes what your appetite is able to tolerate or what you're interested in for food, it might not always stay that way. But being able to be flexible and just working with yourself, as well as working with your whole team, and working with your family to find out, moment by moment, “What can I do now?” And it was like a “so what, now what?” mentality. And I don't say “so what now, now what” dismissively.

I say, “so what” as in, if this is what I'm presented with, if this is what is going on… now what am I going to do about it? Because I've always been goal-oriented. I've always been an action planner. So if I'm not really having much of an appetite with food, but I know I need the sustenance, I need the nutrition, I need to feed my body.

What am I going to do to help work toward that goal, so that I could have the best outcome in that moment? And that was really the commitment I made to my family, myself, my support network, because I decided I was going to refute the idea of dying of cancer and I really with such deepened intentionality, committed to living with it, living with cancer, and living my best life with cancer.

And part of that was just giving myself grace and not grief. And I adopted the mantra of “my best may look different each day, but each day I give my best.” And I think that's just really important. My best may look different each day, but each day I give my best. And that just comes from that place of giving myself grace, not grief, and just figuring out if this is what is happening right now in my treatment, in my care, in my life… what can I do to have the most positive, or the most intentional, or the most advantageous, or the most happiest outcome?

DAN GORMAN: So, yeah, listening to Jessica really brings out a lot of thoughts in terms of how we as palliative care providers can help in situations like this, because I think oftentimes people misunderstand what palliative care is, and what I think Jessica said so beautifully and the paraphrase is that, you know, her goal is to live her best life.

And that's exactly what we want in palliative care. Our goal is to work with you to achieve your goals and to live your best life, whether that's dealing with a symptom such as pain that's not well-controlled, or maybe you have persistent nausea, or you're struggling with food…these are the things, these are just aspects of how we can help you think out of the box sometimes, work with your oncological team, your dietitians, and think through together what's important to you and how do we help you meet that as best we can.

That is the essence of palliative care. So I just wanted to add that because I think this is very important for the audience to know, is that we can be helpful in these situations.

STEPHANIE MEYERS: Yes. And not only are you helpful, this is an entirely separate resource. You know, in particular, your role as the Director of Palliative Care at Dana-Farber, the patients who may feel like they're getting some help in these buckets, if we will, with pain management, or with food, or with psychosocial things.

Your job is really sort of taking a bird's eye view, like getting the landscape of the whole thing and bringing everyone together, so that the experience that Jessica described of really feeling like there is this whole person-centered care, that's the point.

DAN GORMAN: Right. It's sort of the net underneath, if you will, to try to catch the things that might fall from time to time, but really to work with the individual as to understanding what's important to them and helping them obtain that, obtain their goals, and live their best lives.

STEPHANIE MEYERS: Mm. And Jessica, I mean, I think the things that you have said, I think really resonate. It's messy, right? It's not going to look a certain way. There's not a perfect meal plan. There is meeting the moment you're in as an eater and recognizing… I love what you're saying about your best will look different every day. Your plate will look different every day, your cup, your bowl. It will look different every day. And just staying in the moment, recognizing that that is all that we can do as eaters, is stay in the moment and breathe with that, right? I just want to thank you so much for your candidness and your willingness to share really not only how this has started at the start of your journey, but sort of how things are evolving and changing and how you continue as you go through this process… that ball of yarn image.

Really, I'm recognizing that you're taking one bite at a time and you're being really kind to the best of your ability, giving yourself the grace and not a hard time about how eating is going. So thank you both. Jessica, Dan, the wisdom and insight you've shared is so very helpful. And thank you to each person listening right now.

I'm Stephanie Meyers with the Zakim Center at Dana-Farber Cancer Institute. Until next time, be well.

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