After cancer treatment, emotional and spiritual health is key to maintaining equilibrium

Transcript:

Part 1 — Interview with Nicole Sandburg

Bonnie Rochman

Hi, Nicole. Thanks so much for joining us today on our Fred Hutch podcast, Bench to Bedside and Beyond, for our survivorship series. Today’s episode focuses on the emotional aspects of survivorship — what your mind is like after cancer treatment. Things like scanxiety, anxiety over no longer being seen in clinic regularly, lack of trust in your body, relationships that break down.

I know from our previous conversations that you've experienced many of those feelings and many more that I haven’t mentioned. And one thing that really struck me as you told me was how hard you had to work to reach a state of equilibrium after your treatment ended. So both physical, mental, but especially emotional. And that’s really what we’re going to be talking about today — you sharing your experience and your work getting through some really hard spaces to where you are today.

And I’d love for you to just start, so we have some background, by telling us a bit about your leukemia diagnosis. And of course, we’ll make our way to the book that you’ve written about your experience.

Nicole Sandburg

Awesome. Well, first of all, I’m just so excited to be here and to talk about this. It’s such an important aspect of any cancer survivor’s journey — that “after” part. So I’m just really grateful to be here.

So I had acute myeloid leukemia. I was diagnosed in my early 40s. Three young kids at the time, and a Seattle native. And so I very quickly moved from my house in Bend, Oregon, where we currently live, up to Seattle to receive treatments that ended up lasting about two years.

Bonnie Rochman

So it really upended your life in a huge way.

Nicole Sandburg

100%. Yeah. We moved our kids and our whole family up there for six months. And then I came back to Bend after having treatment for eight months for AML up at Fred Hutch — chemotherapy mostly. And I ended up relapsing about four months after we reentered our life here in Bend. And so I ended up back up at Fred Hutch. And at that time, my only opportunity to survive was to pursue a bone marrow transplant.

I mostly was just up there with my family and friends and my immediate kids, and my husband stayed here in Bend, Oregon, for that second aspect of my treatment. It was a very, very grueling experience.

Bonnie Rochman

And also, didn’t your transplant donor fall through at the last minute?

Nicole Sandburg

Yeah. Transplant is its own beast. I had gone through the transplant conversation twice at Fred Hutch. The first year, they were kind of prepping me for “maybe you might need transplant.” And then the second year, it was like, “you absolutely need to do this.” And you go through this hour meeting with the Fred Hutch doctors, and they go through the medicine, which — half of your body is like, this is incredible. This is mind medicine, and I cannot believe that we as a species can do this kind of thing.

Bonnie Rochman

The academic part of you.

Nicole Sandburg

Yeah, the academic part of me was like, wow. And then the other side of me is destroyed, because I’m sitting in that room listening to every which way that this thing could go sideways, because they have to tell you. It’s like those drug commercials that you see on TV where they go through like 500 different things that could happen to you that could go wrong. It’s like that times ten.

And so the courage to face that was unexpected. I didn’t initially know, walking into those meetings, what I was walking into. And that own level of surviving — surviving those meetings and hearing about your cancer and what the path ahead looked like and all the uncertainty of it.

Bonnie Rochman

And I know you had described the memory of these two huge bags of blood arriving, and that just felt like redemption.

Nicole Sandburg

Yeah. That’s a day I will never forget. So if we back up a little bit, I had been receiving treatment for over a year, had relapsed, had two induction chemotherapies to get me ready now for this transplant. We had been told that there was a donor, which was super exciting. And then about a month before my transplant, I found out that that donor had fallen through for some reason. And so that was a very tenuous time. I had received all this chemotherapy, I had done induction chemo again, and all I could think about was, what happens if this blood doesn’t arrive?

And so I checked into the hospital. Right before you have transplant, they give you really intense chemo to basically kill all your stem cells, so the new stem cells can make a happy home in your body. And so I was laying in the hospital finishing all this chemotherapy after being there for a week, but still not knowing in that moment — because it had been two years leading to that — if the blood was actually going to arrive.

And so there were moments where they said, “Oh, your blood is now making its way from Europe,” and “Now it’s at SeaTac,” and “Oh, it made its way over to Fred Hutch, and now it’s on its way over here.” I mean, it’s just a miracle. But then when it walks in the door and you see those bags of blood, it is joy that you cannot put into words.

Bonnie Rochman

So after that process, you started to crawl out of the darkest hole you could imagine.

Nicole Sandburg

Yes.

Bonnie Rochman

And so I think that’s maybe kind of our launching point into talking about the emotional after-effects of treatment. So you’re in this really dark place. How did you crawl out? What happened? Who helped you? How did you help yourself?

Nicole Sandburg

I think that metaphor of a dark hole is so beautiful, because it’s true. You are physically, spiritually, emotionally at the lowest point you could possibly ever be in your life, right?

And after transplant — just to give you a little — I would get in the elevators at Fred Hutch. I would walk from the car to the elevator, and I’m in my 40s. Right? Climbed mountains, ran marathons. I would get in the elevator and we would go up the elevator with my mom, and I would see the little bench outside the elevator, and I would need to sit there before I could make my way over to the check-in desk. I could not stand up in the elevator and walk ten feet.

Bonnie Rochman

Yeah, to the desk.

Nicole Sandburg

You’re physically kind of destroyed after going through all of that.

And so that’s a really valuable question — how did I come out of that? I think one of the biggest things that resonates with me is I leaned into my vulnerability hard. I stayed open. I asked for help, I received help. I called in friends and family that came and stayed with me in Seattle. I lined up people to help my kids and my husband, because that really gave me a lot of peace, knowing that I couldn’t be there — that I could focus on myself. I tried to eat really good food, every day a little bit when I could. And I just slowly, slowly, slowly started to come out of that.

But I think another big piece of it — as you get further away from it. I came back to Bend after transplant, 100 days after transplant, and I was so weak and frail that even walking through the grocery store was an impossible task at that time.

Bonnie Rochman

And you had said it was so wonderful to see friends and family, but you felt like you'd been dropped back into your community like you were an alien. You said, “I felt like I'd gone to Mars” — to be in this medicalized situation, and then be back. And you described a mom just kind of making casual conversation with you.

Nicole Sandburg

And mom said, “Oh, what are your summer plans?” And — summer plans? I’m just happy to be standing here talking to you. Those are my plans. This conversation right here, right now.

Bonnie Rochman

So your orientation had really shifted.

Nicole Sandburg

Oh, 100%. It shifted from, like, one-year goal, five-year goal, ten-year goals that I’ve always had in my life to just standing and being present in this moment.

And so, yeah, I felt so different. First of all, I was bald, so I definitely still looked medicalized. But I also just felt like I had undergone this transformative experience, all this trauma. And at that time, I hadn’t integrated it into who I was. And so I learned a lot about trauma in this last two years — and how you integrate that into who you are and move forward.

That year after, I kept trying to integrate this huge thing that had happened to me. Of course, all the medical stuff is still going on and I’m still getting blood transfusions. I still have a port in my chest. I’m still seeing the doctors all the time. But the other big aspect of it was I was trying to reckon with what had happened to me and how I was going to move forward. And that was extremely difficult. I kept trying to look at what happened, but it was too much. It was too big.

Bonnie Rochman

It was like a sore spot on your body.

Nicole Sandburg

Yeah. And in about a year, I started to be able to actually look at it without being devastated by what I saw.

Bonnie Rochman

Now, you had mentioned you had an amazing spiritual health lady, a counselor. You had said that one day you were outside the clinic, you were crying, you were bald.

Nicole Sandburg

Yes.

Bonnie Rochman

You were in a real low point. And you said she wasn’t even assigned to you as your counselor, but she helped support you when you felt like you had really been pushed beyond your limits. It’s fairly unique that there’s a spiritual health component to Fred Hutch. And so I’m wondering if you could share a little bit about your work with Elizabeth.

Nicole Sandburg

Oh, my gosh. I mean, Elizabeth was — she was kind of like my life raft.

So I was crying outside Fred Hutch, bald, depressed, fearful, in the middle of the fight, in the middle of my treatment. And Elizabeth was coming into work and saw me there, and she asked if she could sit down with me. And it was a ten-minute interaction that turned into almost a two-year relationship that we had with each other. And I learned so much from her.

She would show up — we’d have appointments every few weeks, and I would be in blood transfusion eating my granola bar, and she would show up in my transfusion appointments, and we’d have our spiritual health appointment right there together. Or we would sit outside or go on a very short walk together. And most of these times that I spent with her, I was crying. I was destroyed. There were so many emotions that I was feeling, that she was my landing place for that.

And she taught me so much about how you show up for someone. And she also gave me words for my experience that I didn’t have before this, because I had never gone through anything this big in my life.

Bonnie Rochman

So she gave you a vocabulary.

Nicole Sandburg

That’s right. She taught me the power of “and.” A lot of times we would talk and she would reflect back to me, “You’re saying this and you’re saying that.” And she taught me not to distill down these events into one human emotion. And then when she did that, I was able to look around and see, yes, there is beauty and there is suffering in this. There is joy and there is sorrow. She allowed me to hold all of my experience versus trying to distill it into something that it wasn’t.

Bonnie Rochman

That’s so interesting to me. And that’s actually a perfect lead into what your work is. You work in admissions at UC Berkeley?

Nicole Sandburg

Yes.

Bonnie Rochman

And you evaluate college admissions and the essays that students are writing to try and get into Cal Berkeley. And so you’re evaluating people based on their narrative. As someone who works in admissions, I wonder — did this change how you do your work, how you evaluate the essays, or how you see your own narrative?

Nicole Sandburg

For Berkeley, we have four defining principles for the MBA program that kind of define what a true leader is. And for me, after going through this journey, what I realized was that vulnerability underpins these defining leadership principles. And without vulnerability, you cannot have these other principles. And so for me, as I’ve gone through my work, I look for vulnerability a little bit deeper, because I know that without that, you cannot have all these other things.

Bonnie Rochman

That’s so interesting. A lot of times people feel like they don’t want to be vulnerable. They want to be strong and feel like they want to convey or project an image of being invincible and powerful. And you have a deeper understanding of the importance of vulnerability in your own life and with relationships with others?

Nicole Sandburg

Yes. And vulnerability, I believe, is a massive strength. It’s actually a superpower. It is what allowed me — beyond the medicine that I received, obviously without the medicine I would not be here — but it was my extreme vulnerability that allowed me to survive something that was not survivable emotionally for me before this.

Bonnie Rochman

That’s really powerful. Now, were there downsides or challenges to being so vulnerable? Did some people who you opened yourself up to disappoint you?

Nicole Sandburg

Yes, I would say a very few, very few people. But I think there’s a lot of clarity when you open yourself up, and so you see people’s true colors. And so for me, the overwhelming part of it was I saw people’s profound beauty in a way that I had never experienced the human spirit before, because I was in this state of massive vulnerability. And so when I put that out there, I saw people’s profound beauty and light.

And that was actually something that was hard for me once I got out of treatment, to move back into normal life. I stopped seeing that, because it felt like there was this river, this beautiful river that was flowing below us. And then when I came back out and I came back to Bend and I was outside this community of support, I felt like I was now on top of the river and I couldn’t quite access it anymore.

Bonnie Rochman

Fascinating. So it’s like it really needs other people to step up. You see a part of them, they see a part of you that’s vulnerable, and you see a part of them that’s vulnerable. And then you go back to small talk and talk about the weather.

Nicole Sandburg

That’s right. And there’s a loss — there’s a massive loss in that, because you’ve seen how much better it can be and how much deeper life is and can be when people let down their guard and bring their authentic self.

And when you’re in treatment, people say things that they would maybe hold back. I had conversations that I never would have had with siblings, friends — and people didn’t hold back telling me how they felt or what was on their heart, because we also held that it was possible that I wouldn’t survive this. And so we brought our authentic self. And so once I lived in that space of authenticity, it was really hard for me to remove from that and kind of go back to everyday life.

Bonnie Rochman

So are you able to access any of those feelings of really just diving deep now that you are back to regular life?

Nicole Sandburg

Yeah. I mean, I think that’s one of the things that I’ve had to cultivate. That was something that it took me a long time after transplant to recover, just physically. But then I had to cultivate that in my own life. So I definitely draw people around me that I can speak to authentically on a deep level. And a lot of times for me that ends up being like walks in the woods with friends and dogs, because that to me is such a valuable piece of life. I try to cultivate that as much as I can.

Bonnie Rochman

Well, so I’m wondering — I know you wrote a letter called “I Survived” that you sent to friends and close family at the one-year mark. Is that right?

Nicole Sandburg

Yes.

Bonnie Rochman

And it was really an incredible letter. Probably a bit too long for you to read the whole thing, but I wondered if you could read the paragraphs about vulnerability.

Nicole Sandburg

Sure. I would love to.

[Reading from her letter] “I survived this by leaning into my vulnerability, asking for help when I needed it, letting others in, and staying connected to my friends and family through messages, phone calls, and FaceTime. I have countless stories of being at my end, expressing my need, and those around me — from my medical team to friends, family, or complete strangers — stepping up to help me. I’ve learned the incredible power of vulnerability, community, love, and friendship. I learned that when you reach your absolute end, there are others you can lean on.

If you’re hearing this letter, then from the bottom of my heart, thank you. You helped carry me through when I could go no further. And I made it. I’m here, and I’m so grateful to be alive.

If you take anything from my story, I hope it’s this: that vulnerability is a superpower, and community is what can carry you through. Open yourself up, let others in, and witness their profound beauty. I promise you, it will open you up to a new level of being that you didn’t even know existed.”

Bonnie Rochman

That’s so amazing — for people who have cancer, who had cancer, and just for people making their way through the world. Thank you.

Nicole Sandburg

Thank you.

Bonnie Rochman

Thank you for being brave enough to share that. Another thing I think — that letter helped mark a time period for you where you started leaning into survival and not being afraid to start hoping again. What does that mean, to start hoping again?

Nicole Sandburg

It’s radical. It’s a radical thought to think about, that you were hopeless or that you couldn’t access hope. But for us, our family had gone through so much adversity, so many things where we thought I was better and then I wasn’t. So many things that got ripped away from us, that we were constantly having to adapt. And the future felt very tenuous.

And so in that first year after transplant, my husband and I started dreaming a little bit again. But it was very slow. He would say, “Oh, maybe next year we can—” and I couldn’t even think about next year, because I wouldn’t allow myself to hope yet, because I didn’t want that to be ripped away. I was trying to protect myself.

And then as the year wore on, and as we got to this one-year mark and I wrote this letter, and I started really feeling ready to integrate what had happened into who I was — we started planning a big trip for the summer. And at first it was like, “Oh, I’ll look at the pictures of what you want to do.” And then it was, “Oh, well, we can buy the tickets for the plane as long as they’re refundable.” And then it was, “Well, maybe we can do the hotel, but as long as we can refund it.”

We ended up going on this trip in June of last year. So a year after I came home from my transplant, we went on this five-week trip as a family. And even up until like two weeks before, my heart still couldn’t access the excitement of going, because I still wasn’t letting myself believe that we were actually going to do that. So it was this slow release.

We did all the things. You live like you’re dying, right? So we went to Iceland, we went all over Europe, we went to London, we saw plays, and we went on zip lines and went hiking and rafting. And it was just incredible.

Bonnie Rochman

Sounds incredible. So I want to transition a little bit to some other things that you had told me about — the emotional aspects of dealing with what it’s like to have been in cancer treatment. You have learned how to self-advocate, and you describe yourself as a much more proactive person. And you talked about growing up, you were taught that you shouldn’t question authority. You said your mom is a people pleaser, and you kind of observed that growing up. And now you kind of have the emotional capacity to realize you don’t have to be that way — that it’s actually not serving you well.

Nicole Sandburg

100%. Yes. And now that I’ve gone through these years of different medical establishments, both here in Bend — I was initially at the Boise hospital there — and Fred Hutch, I have learned to speak up, listen, and advocate for yourself. And I talk to a lot of friends about this because I’m really passionate about it. And it’s surprising to me how many of us default to believing what the expert in the room is saying without questioning. What I've learned is that you should be advocating for yourself. You should be asking those questions to understand what is going on.

Since this has happened, I feel like much more an equal in these conversations now. There’s nothing disrespectful about asking and questioning authority, especially when it comes to your own health.

Bonnie Rochman

So going through this process has made you a more confident person?

Nicole Sandburg

100%. Yes.

Bonnie Rochman

Wow. Which was not an outcome you would necessarily anticipate.

Nicole Sandburg

No, no, no. I have so much better understanding of myself, because I had to really listen deeply to what my body was telling me in moments where I was clinging to life. So I had to be deep inside myself and listen to what my body was telling me. I had kind of stuffed that down because I had put others before me as a mom, and I had learned to tap in and to listen more deeply to who I was and what I needed, and to honor that.

Bonnie Rochman

I want you to tell us about your book.

Nicole Sandburg

I’m working on a book. It’s called Tales from a Human Chimera. Chimeras are two different animals in one — so two DNAs. And that’s basically what I am now. I have two DNAs living within my body. And it started to help me kind of work through all that I had been through. And as I started writing it, I started to realize that this was a really powerful topic that I wanted to share more broadly. And so I’ve been slowly kind of working towards finishing it.

Bonnie Rochman

Wonderful. Well, I look forward to reading that when you’re done with it. Nicole, thank you so much for joining us today. This has been a really wonderful conversation, and I really appreciate your time.

Nicole Sandburg

My pleasure, my pleasure. Thank you.

Transition

Bonnie Rochman

So we heard from Nicole Sandburg, who was a BMT — a bone marrow transplant — patient at Fred Hutch, about all the ways that her life changed while she was in treatment and afterwards; how she felt like she was really on a different planet post-treatment when she came back into her world, and all the things she has worked on and is continuing to work on to get herself back into a state of mental equilibrium.

And now we’re going to hear from Dr. Jesse Fann, who is our medical director of psychiatry at Fred Hutch, about the ways that psychiatry can help support patients with the effects of treatment after treatment — basically, survivorship in general.

Part 2 — Interview with Dr. Jesse Fann

Bonnie Rochman

Hi, Jesse. Thanks for coming today and joining us on our Fred Hutch podcast, From Bench to Bedside and Beyond. Jesse is head of psychiatry for Fred Hutch. I’m really excited to talk to you about how Fred Hutch works to support survivorship.

We’ve talked in some earlier episodes in this podcast about how survivorship really begins from the moment of diagnosis. And you mentioned when we spoke previously that you have patients who are in active treatment, and you also have some patients with metastatic disease — cancer that has spread beyond the initial site — and you’ve been seeing them for years because they’re in treatment in perpetuity.

So I was hoping you could just start by talking a little bit about: who are the patients that you see at Fred Hutch? What kind of categories do they fall in? And what sorts of patients might find psychiatry helpful, and why?

Dr. Jesse Fann

Yeah, we really try to provide a very comprehensive array of services for all of our patients at Fred Hutch. So that, as you mentioned, can include people who are newly diagnosed or just starting treatment and continuing in active treatment. Or, fortunately, many, many people live long lives after their treatment, or even with ongoing treatment. So we like to provide the care that’s needed for those patients as well.

And Fred Hutch has been very supportive to provide us resources so that we can meet the needs of the vast array of patients that we have. So I would say the majority of our patients are people who are going through cancer treatment, but we now have the capacity to continue to follow patients even after their treatment, up to several years following completion of their treatment. And as you mentioned, a lot of people continue treatment if they have metastatic disease, and we provide services for those patients as well.

Bonnie Rochman

I’m wondering about the importance of psychiatry and mental health in cancer care. I think most people, when they think of cancer care, they think actually of medical oncology, radiation oncology, surgery — they think of what needs to be done to a patient’s body to help treat or eradicate the cancer. And you have a completely separate and unique perspective on what cancer care means. So I was hoping that you could talk a little bit about the value and the importance of mental health in cancer treatment.

Dr. Jesse Fann

I would love to. As we all know, cancer affects more than just the physical body. It affects a person’s emotions, their psychological makeup, their social situation, their spiritual health. And so we think about how do we really try to address all those aspects of the whole person and not just the physical components.

Our providers here — psychiatrists, psychologists, clinical social workers — are all specially trained in helping people with cancer. And so we’re here to really address the whole array of psychological, emotional, social, and spiritual issues that arise during cancer diagnosis and treatment, and also following treatment. Happy to talk about the issues that people might have even after treatment is completed, because the issues don't stop as soon as the treatment stops.

Bonnie Rochman

One thing that I find really interesting — I think culturally we’re at a time different from a generation ago. People were not in therapy; it just wasn’t something that was as common or as acceptable. And now that feels much more normalized. I’m sure you have lots of opinions on this, but certainly talking about it is not as stigmatized as it used to be. And so a lot of people do see therapists just in their everyday life, people who don’t have cancer.

But then once a person is diagnosed with cancer, there are all these additional things that come up for them that they may need additional support with, even if they were seeing a therapist before a diagnosis. So I was wondering if you could talk a little about what sorts of issues and concerns people come to you with after they’ve been diagnosed, or while they’re in treatment.

Dr. Jesse Fann

Sure, sure. Well, I think that when people hear the term “therapy,” they have their own kind of images of what that looks like. For some of us growing up, we probably saw people in therapy in movies and reading books — lying on a couch and talking about their childhood and their upbringing and things like that. And that’s one kind of therapy.

Another term that might be easier to understand is just counseling, or coaching. It’s the type of therapy that can range from just one or two or three sessions to several years of sessions. And it all depends on what the person needs and what they’re interested in getting help for.

So during the course of cancer treatment, a lot of the help that we provide through counseling — or sometimes medication management — is to help people deal with some of their very immediate symptoms, like sleep problems, fatigue, anxiety, feelings of panic or sadness, feeling overwhelmed. So those are really common things that people encounter during active cancer treatment, and we’re here to help them get through that.

And then following the completion of cancer treatment, there’s a whole array of things that also come up. So the counseling is really tailored to the patient’s needs, and there’s no one size fits all.

Bonnie Rochman

Right. One thing that we had spoken about was people often, obviously, have fear of recurrence — and how do they manage that in their daily life? Things like dealing with chronic or late effects of their treatment, adjusting to life post-treatment. Or perhaps they’re still in treatment — for some cancers, you may still be in treatment, but it’s not like, “Oh, come every week for an infusion.” And then their symptoms afterwards, like chemo brain, or you mentioned fatigue, pain, lymphedema with breast cancer treatment.

So really, I think we use that term, “coping with the new normal.” So I think it’s interesting and probably very important to talk about — it’s not like, oh, okay: diagnosis, treatment, and then things go back to normal, to how they were. There’s actually a new normal. And do people often have trouble kind of easing into that, or figuring out what that is — what new normal means for them?

Dr. Jesse Fann

Yeah, a very common challenge for people. And it kind of catches people by surprise a lot of times — both the patients, but also caregivers and family and friends. A lot of the referrals that we get are actually from people who are recently completing treatment.

And I think on the surface, the uninformed person might kind of think, “Well, what’s the big deal? They’re done with treatment. They should be feeling better and going back to normal, getting back into their normal lives.” But it’s not that simple, of course. A lot of patients continue to have symptoms like fatigue and neuropathic pain and sleep problems. But they’re also dealing with, oftentimes, wondering if the treatment got rid of their cancer, if the cancer is going to come back — that fear of cancer recurrence.

And then a lot of people are dealing with the social aspects of trying to get back into their normal lives, quote unquote. And that can be quite challenging, because their roles in their families and with their friends may have changed during their cancer treatment. People might be kind of treating them differently. Their jobs might not be there anymore, or might look different. Their financial situation certainly probably took a big hit, and so they’re dealing with that. Or maybe they’re trying to get back into school and their education was disrupted.

So all sorts of social aspects of survivorship that people are dealing with, and those things can lead to a lot of distress, anxiety, feeling overwhelmed, feeling helpless sometimes. And sometimes that’s mild, and sometimes that’s more severe and needs more attention.

Bonnie Rochman

People who are more uninformed may not realize that the end of treatment, or the end of active treatment, doesn’t mean, “Whoa, go back to normal, you just pick up right where you left off.” And in fact, interestingly, a lot of patients who I’ve spoken to describe feeling really anxious and — I think you said — even depressed when they separate from their treatment team and they have appointments, say, every three to six months rather than weekly or biweekly or every three weeks.

They’re used to seeing this treatment team regularly, and then all of a sudden their team says, “We’re done with the treatment, I’m going to see you back in three months or six months.” And you feel very anxious about that. So can you talk a little bit about what you hear from patients in that situation?

Dr. Jesse Fann

Yeah, it’s basically a mixed bag. I mean, on one hand, patients are typically glad they don’t have to keep going back to the clinic, and getting poked and prodded and fighting traffic and so forth. So that’s a positive thing.

But on the other hand, they’re kind of leaving the nest. They’re leaving the security of being able to ask questions frequently, seeing people who are super supportive and knowledgeable and able to answer their questions. Sometimes even missing seeing some of their fellow patients who they went through treatment with, the wonderful nurses that help them with infusions and things like that. So it is kind of leaving the nest.

And then trying to go back into the routine of their previous lives, which just doesn’t look the same. And people aren’t treating them the same either — or other people are trying to treat them the same and expecting them to be able to do all the things that they used to do: take care of their kids, take care of the family, handle their finances, doing all the shopping and things like that. Yet at the same time, they’re still dealing with their ongoing fatigue and cognitive challenges and things like that. So it’s a really, really tough time for a lot of people.

Bonnie Rochman

Now, I think mindfulness and meditation can be helpful. You had talked about referring patients often to spiritual health services here at Fred Hutch. So I was wondering if you could talk a little bit about that — about the value of mindfulness and meditation, which some people might think, “Oh, that’s really woo woo.” That’s interesting, that that is part of the cancer center.

Dr. Jesse Fann

Yeah. Fred Hutch is lucky in having a whole array of really, really wonderful supportive care services. That includes our service, of course, but it also includes integrative medicine, which provides complementary treatments like acupuncture, like mindfulness meditation. And then we also have a wonderful spiritual health service, and rehab — cancer rehab services — to provide things like physical therapy. So we really try to provide the whole array of supportive care services.

And mindfulness has really gained a lot of evidence in the past several years, with really good research studies showing that mindfulness-based strategies can be very effective for helping symptoms like anxiety, like fear of recurrence, like even depression and sleep problems. It’s important that the person who’s providing it knows what they’re doing and is trained to do it. But there are also web-based programs now and digital apps that can also be helpful, particularly for patients who don’t have access to face-to-face care.

Bonnie Rochman

Speaking of mindfulness, I think it would be great to touch on something that you told me that I feel is really, really helpful — really for everyone.

You said that when patients, or people who are no longer in treatment, get periodic scans to make sure that they are doing well and that the cancer has not returned, or they get blood tests — there’s even a term, “scanxiety,” around upcoming scans. And you said that in those cases, you often will advise or teach them mindfulness techniques, while also, of course, acknowledging that it’s really normal to have some level of anxiety. You said you advise them to not think about just what the worst case scenario is, but also that there’s a strong possibility that everything will be fine.

I think that’s a great attitude, a great orientation to have — a bad outcome or a good outcome, really, from anything. Why not err on the side of, there's a strong possibility that everything’s going to be just fine?

Dr. Jesse Fann

Yeah. What you’re touching on is kind of a component of what we call cognitive behavioral therapy, which is a highly evidence-based approach to dealing with things like fear of recurrence, anxiety, depression.

And the first thing that we always tell people is that some level of anxiety is perfectly normal and expected, and some form of anxiety is actually productive. If you don’t have any anxiety, then you’re probably not going to know when you need to go see the doctor, or be concerned about a specific symptom. But what we want to watch for is when the anxiety becomes overwhelming, or when it starts to spill over into aspects of your life where it’s not productive, or if the worry is there all day and it’s affecting your ability to do all the other things you want to do in your life. You fought through all this cancer and went through all this treatment — you don’t want the cancer to continue to just take over every aspect of your day.

So cognitive behavioral therapy really helps people kind of find that balance between their thoughts and how they can make their thoughts more predictable and controllable. Because what leads to anxiety, if you think about it, is when people feel like things are unpredictable, and when they feel like things are not controllable. So what we try to do is to help people feel like they have more control over things, through a number of different avenues, and also try to help them feel like things are a little more predictable.

And then the behavioral aspect of therapy is super important, too. You don’t want people to just be stuck in their thoughts. You want people to be setting goals, to be exercising, to be participating in healthy behaviors, eating well, socializing, getting outside — and doing things that they really find enjoyable and meaningful. And those behavioral aspects will also help decrease that worry as well. So you control what you can.

Bonnie Rochman

And essentially you’re trying to distract yourself from the worry.

Dr. Jesse Fann

That’s one way of thinking about it. But you can’t just kind of sit there and say, “Okay, I’m not going to think about this,” because that doesn't work. You have to replace it with things that you’re actually finding enjoyable and meaningful. And by doing that, indirectly you're going to be decreasing some of that worry.

Again, not totally eliminating worry — because it’s perfectly normal to have a little worry when you’re getting a scan, getting your six-month scan or whatever. That’s just normal, and it’s impossible to 100% get rid of that.

Bonnie Rochman

Right. Right. Okay. Jesse, thank you so much for joining us today.