Sapna Kumar:
Are you or a loved one facing multiple myeloma and feeling overwhelmed, afraid of what's next, or grieving the lives you had before the disease? Hello, everyone. You're listening to A Day In the Life Podcast, brought to you by the International Myeloma Foundation. We hope this podcast brings messages of hope and resilience to members of the myeloma community and beyond. Today, I'm talking with Lee and Shelley May, a married couple living in Santa Cruz, California. Also, our guest today is Dr. Elaine Wheat Dawson, a clinical psychologist and assistant clinical professor in the Department of Supportive Care Medicine at the City of Hope. Thanks to all three of you for taking time out of your schedules to meet with me today.
Shelley May:
Of course.
Lee May:
Sure.
Sapna Kumar:
I'm going to start off with you, Lee. You're our representative multiple myeloma patient here today. What was the diagnosis process like for you? When you first started experiencing symptoms, were the doctors able to pinpoint that it was myeloma?
Lee May:
No, they were not. I went about 11 months before they were able to diagnose it. I had a plasmacytoma, which is a tumor on my rib cage, and they kept telling me I had a broken rib. I'm an avid bike rider, so I was sitting at coffee with a friend after a bike ride and another rider came in and he was telling me about how he had an accident a couple months ago and he broke some ribs and I said, "Oh jeez, those take a long time to heal." And he said, "Oh no, mine already healed." And right then I turned to my friend and I said, "I'm in trouble, I'm in trouble." And I went back to the doctor and raised some hell and got a biopsy and then was diagnosed probably 11 months after my symptoms came on.
Sapna Kumar:
11 whole months. Can you recall, then, at that time what your feelings were like, the emotions you went through when you learned of the diagnosis?
Lee May:
At the time, this was 2011 and there were few treatments available. And so my doctor at that time from Stanford said, "Well, you have two to four years and you have high risk disease, so maybe closer to the two years than the four." It is kind of interesting, my first thought was, of course, oh expletive. What do I do now? I've got a family, I've got a business I own. And one of my first thoughts was, well, I've got two years to put things in order for everyone. And that's kind of how I initially focused myself. But yeah, it was not fun, was not easy. And trying to adjust to that, trying to find people, since this is considered a rare cancer, find people that you could talk to about it and get information on it. The landscape's a lot different today, only 12, 13 years later. But then, it was not good. It was basically what I was told was you go on this three-drug regimen and you have a stem cell transplant and then when you relapse, you're pretty much on your way out.
Sapna Kumar:
So Shelley, how did Lee's diagnostics impact you at the time?
Shelley May:
It was shocking. It was 11 months of him being in pain, but it's always shocking to hear that it's actually a cancer and then a cancer that is terminal. And the fact that we had to really get everything together, which Lee did an amazing job of selling his business within the weeks we're very, very, very fortunate. And I think you're in shock of just trying to go forward and put one foot in front of the other and having to tell your children. Our kids were young adults at the time. All of a sudden you are in a new normal that you never anticipated. It was very, very, very difficult. We were very fortunate because one of our son's college roommate's father had multiple myeloma at the time for 11 years, no, not 11 years, maybe 11 years. And he was very, very involved and had a doctor at UCSF, which is Dr. Wolf. And he was able to get Lee an appointment with Dr. Wolf and it just kind of progressed from there, but it was something that's just, you don't want anyone to ever have to go through.
Sapna Kumar:
And you mentioned your son's roommate in college father having multiple myeloma. Were there anybody else in your community that knew of the disease? Was it completely new to you?
Shelley May:
Completely new. I wasn't even pronouncing it correctly, it was so new to me.
Sapna Kumar:
And Lee, you as well?
Lee May:
I just got on the internet and started looking up information. Most of it was pretty tragic, but there were some good information on there. And there's one guy kept coming up in these interviews and everything and he was like a national patient kind of representative or interface for it. His name was Jack Aiello and he just passed-
Sapna Kumar:
Oh yes, I knew Jack as well.
Lee May:
... a few weeks ago. And turns out, I saw his name several times before it hit me that I went to high school with Jack.
Sapna Kumar:
Oh, did you?
Lee May:
So I called Jack up and he kind of helped me through the initial stages, connected, actually encouraged us to start a support group over here in Santa Cruz and he was pretty amazing. He was a good mentor and he was someone I could turn to with any question at a time when answers were difficult to come by.
Sapna Kumar:
I'm sure. And so a question I have for Dr. Dawson, I watched your Living Well with Myeloma webinar that you did for the IMF on Psychosocial Care. It was from a couple years ago. One of the things you talked about in the first stage of learning of a myeloma diagnosis, what are some common types of support or interventions patients and their loved ones should seek at that time?
Elaine Wheat Dawson:
Great question. I think, obviously, there's multiple types of supports or interventions that are available and some of the direction a person takes may depend on what type of need they have in that moment. Some patients have unmet informational needs, as Lee and Shelley were talking about, in which case, some resources or guidance would be things like making sure they have additional time with the medical team to ask all the questions they need or sometimes a structured visit just to ask some questions. Here at City of Hope, sometimes we have what we call family meetings to really gather and ask the specific questions and make sure the patient understands what the treatment plan is moving forward. Listening to certainly informational podcasts or videos such as this one can be so helpful or seeking out informational literature about multiple myeloma, what it is and what the treatment entails, certainly. So that's kind of like informational needs.
Another domain I see a lot, obviously, because of my specialty, is unmet emotional needs at that time. They could be experiencing a lot of new and difficult emotional reactions to receiving this diagnosis. Two of the most common experiences, both for cancer patients and their care partners or caregivers, is low mood or anxiety. So this is a really common emotional reaction or experience, sometimes even temporary, really. But in that case, they might find help from things like therapeutic resources or support groups just to name a couple. I think also another kind of area of unmet need at this time can be social support needs. And this can be connection and conversation with other patients who have gone through it before and that can reduce some feelings of loneliness that come at this time for a lot of people. So obviously, things we've referred to, support groups can be really, really helpful.
Getting linked to local or national organizations that specialize in multiple myeloma or cancer specifically. And even sometimes, I've worked with patients on pursuing one-to-one opportunities for social connection. And I know there are some organizations that try to help with that. A couple others outside of International Myeloma Foundation that I've referred people to are things like the Cancer Buddy app or Imerman Angels, and people find that helpful too. Certainly outside of those things that I've briefly mentioned already, there are some other resources I can speak to here specifically at City of Hope. I know I'll often make referrals to some of my colleagues in spiritual care or chaplains here if someone's looking for some religious or spiritual kind of conversation.
We work closely with our social work colleagues here. Obviously, psychology is a resource that's available. Psychiatry, if they think that medication might be helpful for some of what they're experiencing that's new. So that's specific to where I work, but I know that there are resources like this at a lot of other hospitals or community organizations and it's helpful to know where to look and to have some of that information given to you, hopefully, by your medical team or someone that works at the place where you're being treated.
Sapna Kumar:
And you mentioned a breadth of resources. I'd like to kind of reflect back on the webinar that you did. You mentioned in it the importance of a patient asking for help at that time. Why is that so important in the disease journey?
Elaine Wheat Dawson:
Great question. I think asking for help at the beginning is so important. One, it is such a stressful time. Going through initial diagnosis and start of treatment is incredibly stressful. For a lot of people, it's overwhelming. And there's a lot that's new, and so I think being able to identify what some of your support needs are or ask good questions of the team is really important. There is a lot of shock that can happen at this phase, and like I said a minute ago, there's a lot that can feel overwhelming. So at this point, sometimes it's kind of hard to process some of the information you're receiving because of the overwhelm, but it is helpful to know what supports are available to you. Even if you don't feel prepared to use them now, you might want them later down the line. So I think it's helpful to be informed in that way. This might not be something that I feel like I need right now, but if I do feel like need it in some weeks or some months, where do I go? So asking those good questions is important.
And I think during that presentation I did a couple years ago, I noted that some research has shown that for some people, acceptance of help is actually higher initially when they're first in this phase of the newness and the overwhelm. And so for some people, there's a kind of a crucial window where they may be more likely to seek some of these supports out and get plugged in than they would be later on. With that said, I want to normalize other people's experience though. Like I alluded to in the beginning, some people don't yet feel ready to take advantage of support services yet because there is so much that's already changing and new to them, but further on down the line, they tend to appreciate having that information and then they take advantage when they feel ready. So I think overall different support needs can happen at different stages of treatment. But a good rule of thumb that we try to follow is to evaluate and offer some of these supportive resources early and often, early on in diagnosis and treatment, and then checking in with patients and families often then throughout treatment so that they have the opportunity to take advantage if they weren't ready at the beginning.
Sapna Kumar:
I've been through a number of these stages. I went through them with my mother who lived with multiple myeloma from 2007 to 2011. And one of the things that she often had a hard time with, no matter how she was doing, if she was having a response to treatment or she was doing well, she still had to go back to the doctor. She had to have more labs done, more tests done. She had to learn her numbers, and she called those her dreaded doctor visits. So I would wonder if for Lee and Shelley, how do you mentally and emotionally prepare for all the doctor's visits that you have to go to learn where your disease is?
Lee May:
I don't think you do. Every time you're going to have a treatment, you're going to have to have a blood draw and a doctor visit per treating. So it's like, every week where you have a treatment, your week is pretty much dominated by your illness. And to what Dr. Dawson was talking about, when you're first diagnosed, you don't really know what questions to ask. I think that's a really hard one. And it would be great if doctors referred you to services, but they don't. In general, they just don't. And we deal a lot with the myeloma department. They have their own department up at UCSF with some very noted national experts, and yet, they don't talk about that at all. They don't tell you, "Oh, you've got this local support group", or "Oh, you've got this", or "Oh, you should go online to IMF", or whatever or the other.
There's a bunch of online organizations that can help you out, but they don't. It's up to you to get your name out there, get your email address picked up by IMF or MMRF or Lymphoma Leukemia or whoever can get information. You really have to search for it. And in the process of searching for it, you find a lot of really bad stuff out there on the internet. So it would be nicer if doctors would deal with that more often, but I don't think most of them do. At least none of ours did.
Sapna Kumar:
That extended support network is not there when you go for your doctor's visits. What types of resources would you recommend to patients and caregivers when they're facing feelings of stress, overwhelm, or the fear of uncertainty?
Elaine Wheat Dawson:
I think speaking to what we were talking about when you come for doctor visits, it can be very overwhelming, both for the demand of your time and your schedule. But also, I work with a lot of people who experience a lot of distress about even just coming to see the medical professionals or coming to the hospital or their treatment facility. It can bring up a lot of anticipatory anxiety or anticipatory distress leading up to it, feelings of uneasiness about seeing the medical team or checking in with where their disease status is or their treatment plan in moving forward. So certainly, I think some of those same resources we talked about before can be helpful for this, depending on what it is exactly they're experiencing leading up to appointments.
In addition, I think when I think of my work, when I am working with a patient who's newly diagnosed or experiencing some kind of stress or overwhelm leading up to appointments, we often work to remind that person that the doctor and the medical staff are there to support them, the patient. And kind of aligning yourself with them in your mind can be helpful, I think. Feeling prepared for visits can certainly be helpful if that overwhelm and stress has to do with coming to campus or going to see your doctor. Thinking ahead of questions, sometimes we do this together when I'm in a visit with someone. We think ahead of questions, we make sure they're written down. I encourage them to leave plenty of time for driving, transportation, parking, getting to where they need to go so they're not feeling rushed and flustered getting to the appointment because it can already feel like you blink and the appointment's over or the team is in and out and you're moving on already. We don't want anything to be left unsaid or unasked.
Otherwise, obviously, I think it can be helpful if you're allowed to have someone or you're able to have someone that can come with you to appointments, that can be helpful. Because when we're feeling stressed or anxious, sometimes it can be harder for us to process and really hear what the team is saying or afterwards when we're feeling calmer, it can be harder to recall what was discussed during the appointment. So I think that can be helpful. And I think just kind of overall, if there's ever a point where people are feeling overwhelmed, it's really helpful to try to narrow your focus a bit on next steps. So what's just the next thing that needs to be handled, because I know it can feel like there's a long list of things in the near future that has to be tackled. Let's try to minimize, hone in our focus on what's just the next right thing that can help you take the next step in treatment.
Sapna Kumar:
Thank you.
Lee May:
To build on, if I could interrupt for just a second, to build on-
Sapna Kumar:
Sure.
Lee May:
... what Dr. Dawson was just saying. We find that not taking someone to an appointment with you, or at least having a recorder with you, is a huge mistake because the stress level is so high on the patient that you mishear the doctor or don't hear everything. You kind of take in what you want to hear. I think it's really important to have a care partner with you in that so you can discuss what went on in the appointment and get that information clearly. The stress level, when you're talking about a disease that has no cure, the stress doesn't go away when someone says, "Yes, we're going to give you these six treatments and then you should be okay." It doesn't work that way.
Shelley May:
It wasn't our experience. And it sounds amazing that your hospital and you give those services. But from my experience as a caregiver, and I get it, these doctors, they're in the business of saving your life. They care about your multiple myeloma, they care about your blood numbers, and that's what they care about. I don't think they have the room to, "And how are you feeling about this?" There's nothing on an emotional level. And so it's pretty cut and dry. And I find that there were, for years, these appointments were brutal, and then they got a little bit better.
The doctor would leave the office and Lee and I would look at each other and go, "Oh, boy." And those services just weren't there. I can't say enough amazing things about the facility, the doctors, the nurses, but there wasn't a group that emotionally fed you at all. We had to find that on our own, and I think that's probably more common than not. And the City of Hope offers that, that's amazing, and maybe that could be a model that could be passed through to other hospitals and doctors. But from my experience as a caregiver, I just didn't see that at all.
Sapna Kumar:
I'm sorry to hear that. So it's been-
Shelley May:
I don't blame... Only so much everyone can do.
Sapna Kumar:
Exactly.
Shelley May:
Like Dr. Dawson, you couldn't cure multiple myeloma, that's not your specialty.
Elaine Wheat Dawson:
Nope.
Shelley May:
No one would expect you to.
Elaine Wheat Dawson:
No.
Shelley May:
However, you wouldn't expect a doctor who's premier, who was one of the best in the country to deal with you on a psychological level. There's no bandwidth for that.
Sapna Kumar:
So it's been 13 years, right, Lee, that you've been living with myeloma? Can you share with us, if you'd like to, where you are with the disease right now, are you responding to treatment and maintenance?
Lee May:
Sure. I've been through four or five, six lines of therapy depending on... Every hospital categories lines of therapy differently. And my last one was last year where I got a CAR-T, which is basically the process where they harvest T cells, basically change the genetics and them grow them and then put them back in your body so they recognize cancer cells. So I am in remission right now.
Sapna Kumar:
That's good to hear.
Lee May:
But yeah, it's great. And that's why you need resilience and some quality of life tools. Because you know in your mind, it's not going to last. It might last three years or five years or next month, but you have no idea how long. So I get blood tests monthly. And monthly, I do have that little bit of anxiety waiting for certain results to come back that indicate whether the disease may be coming back or not.
Yeah, I would say resilience is a real key. And my therapist, my personal therapist gave me a little acronym, GEMS, for what we focus on, and our support group too. GEMS is G stands for gratitude, and it's just basically, hey, I woke up this morning, or I've got people who love me. I've got people I care about. It could be anything. The E is for exercise, which keeps your body and mind as healthy as possible going through all this. The M is for meditation because you need to have some mechanism for calming yourself. And the S is for service or social interaction, just means you got to keep going. You got to keep in touch with other people. And basically, this is all about quality of life. It's all about having a life. Because at this point, everybody hopes for a cure, but what we're really thinking about is relapse, not cure.
Sapna Kumar:
And what ideas do you have to ease patient's mind when it goes to thinking about relapse, Dr. Dawson?
Elaine Wheat Dawson:
Certainly. I think uncertainty, and I think that comes with relapse, the idea of relapse or the disease coming back or not responding to treatment. It seems to be everywhere. I think it's just such a prevalent theme. I think most of the patients I work with, I would say probably all of them, experience just a lot of uncertainty throughout diagnosis, treatment. And I always validate that experience. We like to feel a sense of control or preparedness for what's coming our way. It's very anxiety-provoking to feel like we don't know what's coming, and the unknown can just be so intimidating. I always tell people, you're not alone in that experience. And it makes so much sense, even from a survivalistic standpoint.
I think, first, I often will redirect back to let's focus on some of the things that are within your control or the things that you are doing to help yourself or your future self. I really love that acronym of GEMS, by the way. In fact, I wrote it down when you were talking about it because I think it's so clear and concise and it's going to encompass some of the things, I think, I talk to patients about when we work together. So going back to reminding ourselves of some of the things that are within our control. So often, there are things that we are doing or patients are doing to help take care of themselves. They're attending all of their doctor visits, they're taking care of their body through their food intake or their hygiene or their exercise, reporting symptoms or information to the medical team. Because I always say, you are the expert of you. They don't know how you're feeling. So we need to be a good expert witness to the doctors. Tell them what you're feeling, what you're sensing. So you might be doing that well.
You might be doing things to help maintain your emotional health on your own. In other words, there are often things that we are doing or things that are within our control. And I think it can be helpful to remind ourselves of those things because when we're feeling afraid or we're feeling nervous, we might be discounting those things or just avoiding that overall. I often will have a discussion with the patients I work with about when a lot feels uncertain, what are some things that are certain for you? And so I guess what I mean by this, this can be values that you hold in your life, beliefs that you have, supportive relationships you know that you can count on, traits that you know about yourself. There are bound to be things that bring you some source of strength or inspiration or reassurance, and those things can be unchanging, so we often talk about them.
I think another thing, it was included in kind of this GEMS acronym too, is the importance of focusing on the present as well. We can send ourselves into the future a lot when we're feeling afraid or we're feeling anxious. We tend to think about what's coming in three months, six months, next year. And the what-ifs, all the what-ifs that come with uncertainty. But we can do that so often that sometimes we feel like we're missing what's right in front of us or we're not attending to what's going on around us right now. So I'll often ask, "What are you doing now? How are you feeling in this moment? What do you need right at this moment?" [inaudible 00:28:13] a lot of either relaxation and with that, sometimes mindfulness exercises with the patients I work with about coming back to today, this hour, this afternoon, and being present here, because otherwise, I think our thinking and our attention can go into the future so far and to what end?
Lee May:
Yeah, on that point, there's a poet named Mary Oliver. I think she's-
Sapna Kumar:
I know Mary Oliver.
Lee May:
One poem called The Summer Day. And the last four lines really hit me like that because they go, "Doesn't everything die at last and too soon? Tell me, what is it you plan to do with your one wild and precious life?"
Sapna Kumar:
So beautifully put. Yes.
Shelley May:
And I'm thinking just what you're saying just applies to everybody, regardless whether they have an illness or not.
Lee May:
Yeah.
Shelley May:
It just does.
Lee May:
But you don't get that unless you're actually facing something that you may put an end to that.
Shelley May:
Right.
Sapna Kumar:
Right. So presence and the preciousness of life is what we're touching upon here and being present in every moment no matter who you are, whether you're living with myeloma or not. You, Lee and Shelley, both touched upon how you started a support group. Could you tell me a little bit more about that experience and what you received from doing that and being part of a support group?
Lee May:
Well, originally there was a doctor in the community here who's since passed, and he and I kind of started the group. He led it, and then he got too sick to continue with it. So I kind of took it over six, seven years ago. And it's mostly the talking group. In fact, Jack used to be our only guest speaker. But basically, it is just, "How are you doing? Tell us about where you're at, what treatments you've gone through and how you're feeling." And people have this nice discussion and there's a lot of questions and answers about how do you deal with this side effect, and did you know that you could ask your doctor for this? Because again, I don't mean to go back to Jack all this often, but what he used to impress upon us is you are your own best advocate.
And a lot of people will say, "Well, I'm on X amount of this drug, but it's just killing me, but my numbers are great." It's like, "Well, have you asked your doctor if it's possible to reduce the dosage?" People don't even think about that. They don't want question their doctors. There's so much that you can do in a support group, I think, to give people that talking one-to-one with other people who are facing the same kind of things or have been through the same kind of things. Maybe have moved on to another treatment. But the downside of having a support group is you see a lot of people who pass, it's never fun.
Sapna Kumar:
Shelley, how's the experience of a support group for you?
Shelley May:
This is embarrassing and I can't believe I'm saying this. I will, because it's at 4:30 on the first Monday, and it's in this room and there's a chair off to the right, and I don't want to be a part of it. It's so personal, but I want to listen in. I want to hear, and I'll have a glass of wine and listen. There's so many valuable parts about it. But I think that one of the most valuable parts, when Lee gets people that are just newly diagnosed and you know how overwhelming it is, to be able to ask questions and people give their experiences, and I just think that's so valuable.
Sapna Kumar:
It's interesting to hear your perspective and that you do sit back and listen. That's kind of how I feel.
Shelley May:
A glass of wine.
Sapna Kumar:
A glass of wine. Yes, but I don't have a glass of wine. I have a glass of water. But I kind of feel like that I'm sort of on the edge, listening into the stories being told to me here today. And I feel the same way, that this is really for you to share. So Dr. Dawson, outside of coping strategies and seeking maybe one-on-one support with the psychotherapist, how do you see connection with others and finding a community play into a family's disease journey?
Elaine Wheat Dawson:
It's vital. It's huge. I think I often just step back and reinforce that we're social beings. Relationships are hugely important to us, even if it's quality over quantity. Social isolation or severe loneliness has been studied in the past, even in correlation with things like mortality in later years or older life. And it just goes to show how important our engagement and sense of connection is, like a sense of belonging, how helpful that can be. But I think it's come up now multiple times, even in this conversation, what we and Shelley were saying earlier, as other patients or other people who have had a diagnosis of multiple myeloma, that's where they got a lot of information from at the beginning, even just knowing what questions to ask. Sometimes if you don't have those contacts, you have no context for what should I be asking? What should I be listening for? And so it can be a vital source of information, helpful information about being a patient, navigating a cancer diagnosis.
For some people, that's their first serious medical issue they've faced. So then, also, kind of navigating healthcare in a new and different way. It certainly reduces isolation when we feel connected and we have people that we can talk to about a cancer diagnosis. It provides, for a lot of people, they feel some validation or normalization of their experience by hearing other people tell about their experience. It makes you feel like, oh, this is normal, what I'm experiencing, that other people feel this too. And certainly, I think if you have someone, one-to-one or a group, it's such an important thing to have the opportunity for some healthy self-expression. Being able to express yourself and just talk about, frankly or honestly, how you're doing, truly. I think that can be such an important thing.
Sapna Kumar:
I'm going to go back to the wisest person I knew, and that was my mother. One of the things she once said while she was living with myeloma, she said, "I want to put cancer over there. I am here. I am me." Does that sentiment resonate with you?
Lee May:
Yeah. It's kind of interesting, and I thought about this in the past is that while you're either doing well with treatment and in remission, and I'm with the support group, it doesn't feel like I'm one of those people with cancer until something comes up with my test numbers or whatever where I go, "Ut-oh" and I'm back in it again. You almost feel like saying, "Gosh, I feel sorry for these people having to deal with this stuff." But you're dealing with it too, you're just maybe not at the moment.
So yeah, I don't know exactly how to... I try to live as normal life as possible, but that only came after, like you said, I'm 13 years out, but when you're in your first few years of dealing with treatment and there's so much uncertainty... And in fact, as I said, there wasn't that much treatment available. The truth is, in the last 20 or 21 years, there's been 19 new drugs for myeloma approved by the FDA. Not one of them is a cure, but each one of them uses a different modality or a different way of treating that keeps patients going. Whereas when I was first diagnosed, it was two to four years, they were telling everybody, now I understand they're telling people eight to 10 years, which is huge improvement. When you're first diagnosed and it doesn't feel so close, it feels like you've got time to find a cure, you've got time to do these things. So yeah, that's a lot of what I think about.
Shelley May:
That's excellent. And I would like to put it in a plug for Lee. I find him absolutely amazing how he's been living with this and wouldn't know it as far as who he is, what he does, how plugged in he is to the community, to his friends, to working. I've met a lot of people where they're sick and they kind of have that aura about them, and that's who they are, I'm a sick person, and Lee has never ever been like that. You really haven't, maybe when you're in the hospital with CAR-T or with a stem cell transplant, but on a day-to-day basis, this is someone who is very, very engaged in life-
Lee May:
Thanks.
Shelley May:
And I highly respect it.
Lee May:
But I also have a little, I wouldn't call it a trick, but something that gives me perspective. And that is I've been on the board of directors of a children's cancer association here locally that Stanford considers a model for the entire country that provides services to families who have a child with cancer. And every time we have a meeting, we get a report that, oh, we lost three kids this last month. It's so awful and so heartbreaking. But it does give you perspective. It's like, hey, I'm in my 70s, regardless of what happens, I've had the chance to live a pretty good life. So you try to grab onto whatever little thread you can find.
Sapna Kumar:
Nicely put. Dr. Dawson, can you speak to this concept of taking breaks, to find the moments of joy in life for patients and how that plays out?
Elaine Wheat Dawson:
Absolutely, yes. This is something I often refer to in my clinical practice too. I can't remember if I brought it up in the presentation I did a couple of years ago, but I've heard it called Finding Micro Moments of Joy. So that's how I talk about it with people. And again, this is one of those practices I think can be utilized at any stressful point of life, but certainly, during diagnosis and treatment and ongoing treatment, frankly. I know how difficult that can sound or it can feel, I need to be able to do that, when we're under a lot of stress. I do think that in those times, though, when we're really being pushed or stressed or not feeling well, it has to be a little more intentional, which is why I think I talk about it when I'm working with someone clinically.
So this might look like if we're taking action steps, we're intentionally kind of making it happen. We're brainstorming some enjoyable or calming activities maybe that someone's lost focus of doing because of treatment and all that it's brought to their life, or something new, something totally new that they are capable of doing despite side effects of treatment or pain or something else that they're experiencing medically. And then scheduling or planning those things into the week in a more intentional, kind of purposeful way to remind them that enjoyable activities and things that are important and valuable to you, that doesn't have to stop when you're going through treatment. And in fact, we might just need to be a little more intentional and creative with it. I think this can also come in just the form of being reflective, either at the end of the day or at various points of the day. I'll encourage, sometimes, people to do just a brief check-in with what's been particularly enjoyable or meaningful today.
At what point did I feel my best? Was there something I'm particularly grateful for that happened today? And I encourage people to be, it can be as specific as, man, I had a really lovely cup of coffee this afternoon. I loved how that chair felt in my front yard. It can be something small. Micro moments of joy is the idea. And I often kind of couch this in the idea that we tend to find what we're looking for. So if we're actively seeking to recognize moments where we feel good or moments that feel content or happy for us, we're more likely to find those, or at least get ourselves in the mindset to be looking for them, I think, which is important when we're facing a lot of adversity and stress. So I think that's what I tend to mean when I talk about finding these micro moments of joy and trying to be a little more intentional about them when you're going through cancer treatment.
Sapna Kumar:
I have a lot of takeaways from this podcast, and I don't think it's just for people who are living with cancer, micro moments of joy, GEMS, and being present, all of that. So thank you all three for participating in this podcast today. I think it's going to be very beneficial for all members of the myeloma community and beyond.
Lee May:
Thank you.
Shelley May:
Thank you.
Sapna Kumar:
You've been listening to A Day In the Life Podcast, brought to you by the International Myeloma Foundation. To learn more about the IMF and Myeloma, visit us at Myeloma.org.
