Dr. Reidy-Lagunes (00:03):
It just feels surreal, doesn't it? As we start to sense in the world a slow return to normal, many of us are just exhausted and confused. After more than a year of social isolation, we are still disoriented, mentally fractured, emotionally spent. For people with cancer – a constant uncertainty – when will it ever be safe? We built imposing barriers to keep the virus out, but as they come down, the impact on our mental health could be with us for a long time to come. Let's talk about it. Hello. I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have straightforward, evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier, healthier lives. For more information on the topics discussed here, or to send your questions, please visit us at mskcc.org/podcasts.
COVID world has been extremely stressful, not only for me, but for my entire family. You fight so hard to recover and make great progress only to be worried about dying from this awful virus. The good news is that no one knows how to keep safe better than me. The bad news is it's super stressful and exhausting to worry about others not wearing masks, not following the mandates and guidelines, and generally putting me and others like me at risk. It's been really challenging to stay positive through this pandemic, but I know that I didn't fight through my AML and transplant issues to be defeated by this virus. So I stay positive, I exercise, I enjoy the park, I enjoy the fresh air and I wake up each day grateful to be here and looking forward to a better tomorrow.
Dr. Reidy-Lagunes (02:13):
Waking up every day and staying positive is incredibly hard. Right now, 57% of Americans are suffering from some level of emotional distress. We totally get it. Today I am honored to have my colleague and friend Dr. William Breitbart, chair of psychiatry here at Memorial Sloan Kettering Cancer Center. Bill, thank you and welcome to the show.
Dr. Breitbart (02:36):
Thank you, Diane. I'm really glad to be here.
Dr. Reidy-Lagunes (02:39):
As you heard, um, our patient Jeff Spear fought tooth and nail for his AML, and what his doctor described as his demons and dragons, only now to be faced with this pandemic. Obviously he's putting up with a valiant effort, but it's weighing on him. What have you been seeing with our patients during this time?
Dr. Breitbart (03:00):
The pandemic has really had a very diverse and varied kind of impact on most of our patients. I've heard a lot of anxiety, panic, depression, isolation, fear. One of the things that strikes me about the COVID experience is that we don't necessarily think about death or dying very often at all. Now, many of our cancer patients do think about that. They understand that terrible things can happen, but most of us don't tend to focus on that. And what COVID has done is it has brought an increased or enhanced sense of the fact that death exists in the world and that death could happen. So COVID has forced everyone to confront the reality of human life, which is that we're very vulnerable.
Dr. Reidy-Lagunes (03:45):
I remember my own patients saying to me, you know, with his frustration and anger, not only for the pandemic, but you know, the situation, for example, with masks and how certain people weren't wearing masks. And I remember him saying like, they could kill me and yet they're not wearing masks. Like, the fury, it's understandable. Cause like you said, they're so vulnerable, we're all so vulnerable. And so that, that fragility of life, as you said, I think all of our cancer patients feel it when they get this life-threatening diagnosis. But, but all of us felt that over this last year, for sure, um, and I think, I think that's why those of us that, you know, really could see the devastation that this virus took on so many of our patients were so beside ourselves, when people weren't wearing masks and trying to convey that message of, yeah, you can kill somebody if you, if you don't wear that mask even without knowing it. And I think that was really hard for our patients to swallow.
Dr. Breitbart (04:38):
One of the great lessons of COVID is that when you're confronted with things that you cannot control, you then have a choice of how to deal with it and how to respond to it. We're not completely passive. You know, a tree is rooted in the ground and it's completely reliant on the weather to bring sunlight or rain to nurture it. But human beings, we can move to where there's sunlight, we can move to where there's rain, we can move away from the people who are not wearing masks. And sometimes those responses or the choices you make might involve not necessarily doing something, but it can be like moving away from someone who's not wearing a mask, uh, or it might involve just how you think about something to accept something. So it's all about choices and about how we respond to the things that are difficult,
Dr. Reidy-Lagunes (05:29):
Let's switch gears and talk about the caregiver. It's such an emotionally draining position to be in. I'd like to share with you a passage by Ursula and her husband, Ray, who is her caregiver.
I was diagnosed with stage four colon cancer in January of 2020. So that was right before COVID set in. And you know, the first treatment that my husband took me to – he could still get in – they had therapy dogs there, which was awesome. And then it all stopped. So I can just tell you that it's rough. I mean, it's rough enough to have cancer and then to add COVID to it, it's just, I'm not going to lie, it's it's not pleasant, it's not fun.
From a caretaker's perspective, um, there's a good thing and there's a bad thing really about the COVID thing. The good thing is of course I'm working from home right now and I have more time to spend with her. The downside I thought was like, we have three kids and they of course have their own lives and they want to go out and potentially come back with COVID and infect my wife and me which would have really been a disaster.
When you're immunocompromised, it's really tough on the kids. Anyway, we're looking forward to having the therapy dogs back at chemo.
Dr. Reidy-Lagunes (06:52):
We're all looking forward to those therapy dogs. Clearly for Ursula, I mean, this was a one-two punch. First she gets this life-threatening, devastating diagnosis at such a young age with a young family. And now she's dealing with COVID in this pandemic. But can you share with us a little bit about how you think the families are dealing with this during, during this terrible time.
Dr. Breitbart (07:14):
Being a caregiver is often quite difficult, but it's also an act of love. Caring is one of the most essential elements of what makes us human. When you're stuck in the house and you're overwhelmed with other tasks, having to take care of kids and things like that, the caregiving responsibilities tend to multiply. It gets overwhelming. One of the strategies that I find helpful is to move from ways of doing, doing a caregiver, to being a caregiver. And being a caregiver involves the time and the love, the connection and the intimacy and the touching and talking, talking about emotions and feelings and hopes and dreams and things like that. So it all often boils down to trying to find ways, not only to, when you're struggling with cancer and COVID, to still be authentically who you are as a person, to preserve the essence of who you are, the same thing holds true for being a caregiver. The real challenge is to preserve the essence of what it means to be a caregiver to someone you love, and providing care isn't always practical stuff. Sometimes it's just snuggling.
Dr. Reidy-Lagunes (08:31):
Warm hugs, yeah. She commented a little, you know, they've got teenagers who have their own lives and are in and out of the house. Talk a little bit about guilt of, you know, here's a patient with stage four disease, which is incurable, people are trying to protect her. But, you know, life is moving on sort of, slowly during pandemic time. But can you talk a little bit about that? The guilt issues that might come up, particularly for caregivers and other family members?
Dr. Breitbart (08:58):
Well, guilt's a very big issue in cancer in general, and in caregiving as well. The guilt that's most common, you know, in this for cancer patients and for caregivers, is not so much that guilt that I did something wrong, I did something bad. It's really what we call existential guilt. The idea that we may not have done quite enough, could have done more. This guilt comes from not living to our fullest potential. And so for cancer patients often it's, I'm not going to get a chance to perhaps see grandchildren, or I may not be able to see my kids grow up. And for caregivers that I may not have done quite enough to take care of the person that I love, who's going through a cancer experience. And the bottom line is, uh, you can try a little harder, but ultimately what's really required is the ability to forgive yourself a little bit for, um, just being human and being imperfect. I think one of the things COVID reminds me of is that, you know, this is really what life has been like for most of the history of human beings. It's not been as easy and as cushy as it has been for our generation. It requires a bit of courage to go out there and live a life. It requires a bit of courage to love because you have the potential to lose the person you love. And it takes courage to care about things in the world.
Dr. Reidy-Lagunes (10:23):
I want to share one last cancer patient who endured pretty intensive therapy for her cancer, is now in remission for 14 years, meaning she's cured of her cancer. It was pretty traumatizing for her at the time, understandably, like many of our patients when they endure very toxic treatments. And then she goes and unfortunately is diagnosed with COVID. Let's take a listen.
I'm Jen Singer, a 14 year Non-Hodgkin's lymphoma survivor from New Jersey. Last spring, I caught COVID, which caused a complete heart block. After five days in the hospital, I wound up with a pacemaker and heart failure. On the one hand, all that time in cancer treatments helped me navigate COVID. I mean, I know how to unplug all my wires and take myself to the bathroom. On the other, it brought back all the feelings from cancer: sadness, loneliness, fear, that brand of "why me" anger. It's like having a house guest that you don't like decide to move in above the garage, and you can't just kick them out. This time though, I know that the only way to get over it is through it.
Dr. Reidy-Lagunes (11:30):
I love when she says that. The house guest is back over the garage. I mean, it sounds like post-traumatic stress disorder or PTSD that you have one life threatening illness that you think is behind you and boom, here comes another one 14 years later. Can you comment on her feelings and emotions?
Dr. Breitbart (11:49):
Sure. This is a really interesting snippet. It's quite rare for cancer patients to have a full blown post-traumatic stress disorder. What is a bit more common is the experience that this patient describes, which is after you go through a cancer experience, when you then encounter another experience in your life, that is potentially life-threatening, obviously many of the memories come back from the earlier cancer experience. What I found really important for our listeners about this particular story is that she's telling us that she learned something very important from her first cancer experience. She basically said, what I learned is I have to just get through it. And so what she's telling us is that going through her cancer experience taught her some important lessons about life and how to deal with adversity. And they mainly have to do with the attitude that she chooses to deal with and how to choose to deal with limitations and threats and suffering and things like that
Dr. Reidy-Lagunes (12:59):
Talk to me a little more about that piece, because I think what you just said is so critical. A lot of our listeners are switching now, for all cancer patients, you hear, you know, "attitude really matters and you have to choose your attitude."
Dr. Breitbart (13:12):
Yeah, because that's a dangerous thing. When I say attitude, I don't mean that if you have the right attitude... There's something which I call the tyranny of positive thinking or the tyranny of having to have the right attitude. So the dogma is that if you're just able to think positively, or if you're just able to have the positive attitude, that that will lead to a positive outcome, that you will live longer with your cancer, you will survive your cancer. So when I'm talking about attitude, I'm talking about who you are as a person, what are the essential values and truths about your life. And so when you are confronted with difficulties that require you to make a choice – How am I going to live with heart failure? How am I going to live with this cancer? – Your attitude basically is informed by your values. And it guides you in making choices and responses to these adversities that allow you to still be who you are. I'm still going to be a loving person. I'm still going to be someone who cares about my family and people in the world. I'm still going to be me, who I am.
Dr. Reidy-Lagunes (14:24):
So it's okay to be pissed off when your kid wants to be liked, or scream or yell or put yourself into a pillow?
Dr. Breitbart (14:32):
Right. I mean, how can you not occasionally get angry and sad and all that. It's impossible to be positive all the time. It also brings up the issue of hope too. Sometimes, you know, people talk about hope and that's an interesting topic. We might want to talk about that a little bit later if you want.
Dr. Reidy-Lagunes (14:50):
Sure. Back to that though – "it's okay to not be positive all the time" – Is there a moment where it's okay to fall apart?
Dr. Breitbart (14:57):
Yeah. So when you fall apart, what you're really in touch with is the fact of your humanity, the essence of your humanity. All of us are imperfect. It's our imperfections that are very, you know, very interesting. Our imperfections are what allow us to have empathy for other people. So it's our imperfections that allow us to love and to be loved in return. So when you're falling apart and you're crying and all that, you are being truly human. Truly, truly, truly human. And when you're being truly human, that's when your heart and your essence are just filled up with the sense of meaning. I'm feeling alive. And we need to express our emotions. That's the other part of it. It feels better after you express your emotions. It really does. And it's good to have, speaking of caregivers, it's good to have caregivers who understand that, you know, "Don't judge me right now as I lose my cool and I'm starting to yell and scream. Please understand, I just really needed to do that."
Dr. Reidy-Lagunes (16:01):
Okay. Absolutely. Another, I would say struggle or challenge, sometimes that some of our cancer patients have, is, you know, you have that emotional side, but then the cancer itself, whether it's the diagnosis or the treatments, there's a tremendous amount of fatigue that comes along with our patients' diagnosis. And I wonder if you could just talk about that a little bit, because I do think like many of our patients want to be positive, they want to go out there and run the marathon, but like they just physically can't. And you know, I hear caregivers, like you said before, that want to do everything possible and say, you know, I just want them to get out and walk around. And sometimes that's hard for our patients to just get up and walk around. So I wonder if you could just comment on that.
Dr. Breitbart (16:41):
Yeah. I think that's the hardest thing about cancer and for caregivers as well. Fatigue is very debilitating. It's disheartening, it's demoralizing. And so it's a big problem. Now, there are things that can be done about fatigue. Most cancer patients who have what's called cancer-related fatigue, there are usually causes of it. There are certain medications, certain electrolyte abnormalities, there might be certain vitamin deficiencies, you might be in a severely anemic, things like that. And so wherever possible, you want to work with your doctor to treat the underlying causes of fatigue. Typically there are multiple ones, multiple causes all at the same time. It's usually not one thing. But there's some non-pharmacological interventions that have evidence-based fixes for fatigue. Things like meditation, yoga, Tai-Chi, Quinn Jong, things like that, cognitive behavioral therapy, a little bit of exercise is helpful. And then there are some medications that can be helpful. You may talk with your doctor about some mild stimulant medicines. And of course there's some nutritional deficiencies. Some people might be deficient in a vitamin called carnitine. If you replace that, for instance, that helps. But the most important thing is to understand that fatigue may be a fact of life and it may be a constant companion during a cancer illness, but there are other non-physical ways of being able to experience awe and joy and love and meaning in the world. When I listen to music or when I look at beautiful art or I read poetry, a lot of relatively passive ways of experiencing awe and joy and love and meaning without having to run a marathon or even getting out of bed.
Dr. Reidy-Lagunes (18:38):
Beautifully said. I do want to go back to that hope conversation that we alluded to earlier. And particularly in our patients where they have stage four incurable disease, they know where their journey ends, and you know, many of them are 20-something, teenagers, 30-something, just starting their lives. How do you have that conversation of hope in those moments, knowing that their time with us is limited? And that, like you said before, I mean, they had dreams and aspirations and they want to have that hope, but they recognize where this is leading.
Dr. Breitbart (19:15):
Right. It's very hard to live without hope. When my son was born, I looked down at him in the crib and I said, "Oh my God, what did I do? I brought this life into the world. How do I break it to him that life is just finite? It's temporary." We're very concerned. We're very frightened about uncertainty, right? We want certainty. When you're a cancer patient, you want certainty. And uncertainty is very frightening. And so the challenge really, for all of us, is how to be able to live a human life, which is by definition finite. It ends for all of us, right? So what hope is all about is participating in the creation of your future, right? Now, the reality is for our cancer patients, when the hope for a cure is lost, it gets replaced by thousands and thousands of other very critically important hopes. "I hope not to be in pain." "I hope to be able to experience meaningful moments that have meaningful experiences of love in my life, as frequently as I possibly can while I'm alive." "One of my biggest hopes is when it's my time to die, that I die with my son's face being the last face that I see, that I'm holding his hand the way that I did for my father." So those are very, very important hopes.
Dr. Reidy-Lagunes (20:38):
So as we come out of, hopefully the other side of this tunnel, I could imagine that there could still be some emotional distress thereafter. "Will I always have to wear a mask? Or how will I feel post pandemic?" What's your take on that?
Dr. Breitbart (20:53):
I think the most important thing to remember right now is that we're going to see this pandemic not stop abruptly. It's going to be something that's going to take a period of time. So I believe we'll probably be living some form of the experience over the next perhaps year or so. I think what will start to emerge is a cautious kind of hope, right? A cautious kind of hope or ability to interact with family and loved ones, and to touch people finally, to embrace them, and to have social interactions. So I think it's mainly going to be on the upside
Dr. Reidy-Lagunes (21:31):
Bill, thank you so much for being helpful and hopeful.
Dr. Breitbart (21:35):
Thank you so much, Diane. This has been a real pleasure for me.
Dr. Reidy-Lagunes (21:37):
Right back at you. It was terrific. Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information, or to send us any questions you may have, please visit us at mskcc.org/podcast. Help other people find this helpful resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. I'm Dr. Diane Reidy-Lagunes. Onward and upward.