Caring for a Spouse with Cancer, with Scott Joy

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses. Caring for a loved one with cancer can be challenging as well as rewarding. But you are not alone. In this series of podcasts, developed in collaboration with LIVESTRONG, Aditi Narayan and Mike Threadgould interview family caregivers, who share their stories and offer advice for others facing similar situations. In today’s podcast, Scott Joy, a testicular cancer survivor and patient advocate, discusses his experience when his wife Judy was diagnosed with multiple myeloma, including some of the bright spots and challenges, things he wishes he had known at the time, and tips for other caregivers. Aditi Narayan is a social worker and Director of Programs & Strategy at LIVESTRONG, and Mike Threadgould is Senior Manager of Marketing & Communications at LIVESTRONG. Scott Joy is a LIVESTRONG senior leader and a member of Cyclists Combating Cancer. ASCO and LIVESTRONG would like to thank Mr. Joy for discussing this topic. Aditi Narayan: I'm Aditi Narayan. Mike Threadgould: And I'm Mike Threadgould. Aditi Narayan: And we're with the LIVESTRONG Foundation where our mission is to improve the lives of people affected by cancer now. We are joined today by Scott. Scott, thanks so much for being here. Scott Joy: I'm happy to be here with you. Aditi Narayan: Thanks. Can you tell us a little bit about who you are and your connection to cancer? Scott Joy: Yes, I can. My name is Scott Joy, and I'm from the New Hampshire seacoast. I'm a father of four adult children in their 20's. I'm a business technology professional, a tenor, a recreational cyclist, and a 15-year testicular cancer survivor myself, and a LIVESTRONG volunteer since my diagnosis. But I'm here to talk about my role as a caregiver for my wife of 26 years, Judy, who was a beautiful woman, intelligent, witty as a can be, a novelist of 2 young adult science fiction novels. And, unfortunately, 10 years after my diagnosis, she was herself diagnosed with multiple myeloma, which is a blood cancer, and only lived with the disease for about 3 months or so. So I'm here to talk about that. Aditi Narayan: Thank you for sharing. Mike Threadgould: And so, obviously, here we're talking about roles as a caregiver. What would be something you would share with somebody else who was facing being a caregiver and the challenges or the opportunities that they would face? Scott Joy: I think the first thing I would say is to be easy on yourself, that it's a tough role, and you will make mistakes. And if you can talk them through, mostly with yourself, just be kind on yourself. Do your best. Accept all of the feelings as they come. You'll have them all. Take help where you can get it. Be sure to take care of yourself, to step back and rest when you need to, and just do what you can. Aditi Narayan: And would you say that those are things— I mean hindsight is 20-20, right? So are those things that you did yourself? Did you accept the feelings during the process, or was that something you wish you had done after? Scott Joy: It's always a mix, right? So there are some things that I— I felt fairly prepared just because at that point, I'd had 10 years of experience myself in the patient role. I had friends from the LIVESTRONG community. I felt I had lots of resources I could turn to, both for information and for emotional support and just for the practical, “what should I do?” But it's still hard. Knowing that you can do it and feeling that you can do it are awfully different things. So I did feel somewhat prepared, but I had a lot of learning to do along the way to feel like I'm not doing enough: there's got to be something more we can do. I'm doing too much: Judy's now feeling overwhelmed with all of the options I'm trying to provide to her, and she just wants to talk to the doctor, and get into treatment, and not worry about all of the other things I might be able to do to help her. I'm going too far now. So I had a lot to learn. Aditi Narayan: Yeah. It sounds like it. And so would you say that communication line between you and Judy seemed to be really important in keeping that open? Scott Joy: It absolutely is important. I'm not going to say I got it right all the time, for sure. But I do think that her diagnosis actually helped our communication in some ways. She could now sort of suddenly understand some of what I'd gone through and appreciate it more. She told me at one point, "You know? I would marry you all over again," which is something I hadn't heard in a while. [laughter] So there were good points. Mike Threadgould: And I think we've spoken before, and we know at LIVESTRONG we talk a lot about the fact that there are a lot of resources now for cancer patients, to deal with their emotional challenges, and we provide those in different ways. But a lot of the time the caregiver is not aware of those challenges and the emotions that come with it. What were some of the challenges that you felt as a caregiver which maybe was different than being a patient? Scott Joy: Let me think about that. One of the things that was just so different is that in the patient experience, I sort of still felt like I was in control about decisions that needed to be made, because it was all about me. And in the caregiver role, I had to realize that I'm not in control of anything. It really is about what she needs. And although I need to try to get all of the information I can and absorb all of that and help where I can, I also need to realize that what I want isn't what matters right now. It matters some but it doesn't matter as much as, “what does Judy need?” So that was a big change and, obviously, the realization that this is an incurable disease that she had. I had a disease that could be treated and cured. She had one that needed to be managed and sort of coping with that from the beginning, that I am going to lose my wife. I don't know when. Maybe it's going to be 10 years down the road. Maybe it's longer. Maybe it's shorter. I had no idea it was going to be 3 months. And just understanding that someday— all of us are going to have limited time on the earth, so it's not a surprise. But just the realization of this is going to change my life. That was a big deal. So strap in. Do what you can. Be there for her in sickness and health. That's what I promised to do, and I did the best I could. Mike Threadgould: We all find our way in our way I suppose. Scott Joy: Right. Aditi Narayan: Was there anything that was a part of your experience and your journey that you would say was unexpected or surprising? Scott Joy: I think the unexpected part for me, other than just the diagnosis itself, the I'm no longer the cancer patient in this family here, right? was the difference in the role. I expected that all of the information and the support that I had would be enough, and it wasn't. It just wasn't enough to solve the problem and to get to the cure, to get past it and live a long, healthy life together. That was the surprising part. And then just the not being prepared for the what-ifs, the pushing that aside and focusing solely on the treatment and the path to cure, and not thinking about the, “what if this doesn't work?” It was always, “what's the next step going to be, and the step after that?” and not the preparing for the worst-case scenario. Aditi Narayan: And what was the impact—because you mentioned at the start of this conversation that you're the father of 4, and your kids are now all in their 20's—but what was the impact in terms of caregiving, not only for your wife who had cancer, but also for 4 children at the time? Scott Joy: That was the one thing that I wish I had more help with was knowing the right way to help my kids. We're so focused on the practical things of the getting to the hospital and the meal delivery and the-- they're all still-- at that point were all still in school. Three of them were still in high school, and one was off in college. And I would love to have known how to better help them with what they needed. My sons, in particular, I think were maybe more, setting that aside and thinking, “I'm going to class, and I'm going to soccer practice, and I feel for mom, but I'm also living my own life as a teenager.” And I don't know yet, still, how that's impacted them and will show itself in the years ahead. I think my daughters tell me more about it, and my sons just sort of shrug it off. Mike Threadgould: So in a similar kind of realm, and you said that they were going to school every day and trying to live day-to-day, how did being a caregiver affect you day-to-day? Obviously, you had to change your routine, as you mentioned having meals delivered. What was that experience like? Scott Joy: So part of it was trying to stay as much as possible in the routine and continuing to work, which is necessary to support the family, and not feeling like the world is as shaken as it is. So I did keep going to work. It's hard not to feel distracted every moment—but you know that things that have to be done in the office—but to be open to leaving when you can to help, and to get to a point and to make sure that Judy had the company she needed. I was lucky that we had a neighbor up the street, a close family friend, who could step in and help with a lot of that so I could continue to work without feeling like I was abandoning my wife. I think I'm stepping away from the question now. Can you help me back to it? Mike Threadgould: I think you've touched on that. It was more just the day-to-day. Like you say, going to work, that's, obviously a big shift in emotional energy that you have to go through, and the day-to-day becomes a very different routine when you're a caregiver. Scott Joy: Right, yeah. It really does. Between the mix of trying to stay normal and the needing to take on new responsibilities, things that Judy would have done. We were both working parents and were more partners before, and to have to have that shift where now I've got to worry about making sure the house stays clean, and the pool gets vacuumed, and all of those things that just weren't on my plate before. And how much of it can I take on? And how much of it is fair to ask the kids to try to help with? And how much can we feel comfortable depending on other people and take the help? People are offering it and want to help, so don't be embarrassed or worried that you're becoming a burden. If people are willing and able to do that then, by all means, let them. It's good for everybody. Mike Threadgould: Absolutely. Aditi Narayan: So you mentioned that you had a neighbor who came in and stepped up and was really helpful to you. Who were some other people that really helped with your day-to-day caregiving tasks? Scott Joy: I think a lot of the day-to-day caregiving fell to me and to Marnie. And the practical side of things, I guess, would be supported, of course, by the hospital staff and not just the doctors but the nurses for certain. They have some emotional support resources. That's less on the practical and more on the emotional, but you can't get the practical done without the emotional help, or you fall apart. So that's a certainly a big part of it is just having somebody to lend an ear to keep you going. Mike Threadgould: And you mentioned earlier the importance of taking time for yourself. Do you feel like you managed to do that? What we hear from a lot of caregivers who they only do that when they reach the end of their rope. They don't do it early enough that it actually helps them through the process. They kind of get to this point where oh god, I've got to take time for myself. Did you feel like you went through that in a positive way, or was it— how would you explain it? Scott Joy: I think it was learning. It was a struggle to feel I was getting it right. There's some guilt when you step back and think I'm not doing enough. I'm not filling the role I need to. I thought we were going to be doing this for years, so I wasn't sure how much to pace myself. I did enlist family help. Now that I had got it, Judy has had 3 older sisters and a brother. And 2 of her sisters were-- 3 of her sisters, all of her sisters, were able to come and spend some time. So I took advantage of that and didn't cancel my attendance at a business conference. So I escaped to Orlando for a few days in October which I wouldn't have done if I had known, that was 6 weeks, I guess, from Judy's death. I wouldn't have gone. I absolutely would not have gone. But I got away for that. I stayed true to my commitment to go to the LIVESTRONG Challenge here in Austin. So I was expecting that that was going to be my break. And then I would go home, and we would get ready for the bone marrow transplant that was planned in January. And we just didn't get that far. So I think I was pacing myself more than I would have if I had known which should have been a good thing. I should have been taking the time I needed for myself. Mike Threadgould: Exactly. It's so hard to know when a diagnosis has no defined limits to. It could be three months. It could be 10 years. How do you pace yourself through that? There's such uncertainty. You obviously want to make the most of life, but you've got to find that balance of taking time for yourself and re-energizing yourself to be there for your partner, or whoever it is, that you're helping. So a difficult situation for sure. Aditi Narayan: We’ve talked a little bit about your support systems. We've talked about Judy's family. We've talked about your neighbors and, perhaps, other friends who were supportive. Were there any resources, other than family and friends, that you took advantage of or that you accessed that were really helpful for you and maybe for your children as well? Scott Joy: The local Stratham Community Church, a lot of support from that group. Really, friends and neighbors. The meals that kept coming which they managed to pace well for us so that we weren't feeling completely overwhelmed by that, too, which can be if everybody's trying to help so much that you don't know how to control the help as it comes in. We didn't have to. We had somebody who was helping with that. I think really just the knowing how to help my kids and more family resources than practical resources, I guess. If we'd had other people who had been let us take the kids for the day or— because with the only help there was people who were trying to talk to the kids about their experience. And the kids didn't want to have those conversations. Aditi Narayan: So somebody to really normalize, to some extent, their day, to sort of not focus on the cancer for a while. Scott Joy: Right, right. I guess to do that in a way that feels respectful and if they're open to what they want to talk about, great. And it's a tough balancing act to know what's right. I don't think I got it right. Aditi Narayan: I think that's a really interesting feeling and thought. And I'm sure it's something that many caregivers struggle with is did I get it right or feeling like they didn't get it right. But really what is right? It's such an arbitrary concept. Scott Joy: Yeah. You don't know. And I think it was different for each of them. I think my daughters were closer in how they reacted and what they needed. My sons were closer in what they needed and how they reacted. But all four of them have different personalities and perspectives and needs. And understanding that on top of—we've got to be 100% focused on Judy. But they need help too. And what is that help? Aditi Narayan: Yeah. And I wonder for-- you've talked a little bit about how at some points Judy felt overwhelmed with the attention that she was receiving as a result of her diagnosis and care. I wonder how that puts a strain on dynamics between you and your spouse, but also the parents and children as well, is how everybody's trying to find that balance of wanting to normalize but also wanting to acknowledge that something's not right. Scott Joy: Right, yeah. And the other complicating factor was, of course, the difference that all of the pain medications had in just Judy's behavior some of which was just alertness and ability to understand. Opioids really take a toll when you're so dependent on the pain medications to not feel terrible all of the time. That was a struggle for her. Mike Threadgould: Do you feel like your healthcare team prepared you for those struggles in terms of, particularly with the medication and the changes that are going to be physical and mental that that would bring to her, but also how it might impact you? Scott Joy: I think that was another big surprise for us and certainly for me. I don't know, honestly, how Judy-- how much she knew about what the impact, whether it was just happening. I'm sure she recognized that in the changes and the phone calls she would make and just bewildered, “I'm not sure. I think I just took a pill, but I don't know. What should I do?” And I don't know how to help with that from my desk at work. I can't tell whether you just took a pill. How do I help you? So some of that was a big challenge. And I don't think we were well-prepared for it to know these are the things that may happen, and what you should do when they happen, and when you should call us for help. I think we could have used some more guidance. And there was so much more concern, I think, about the practical parts of it about making sure we got the dosages right, and the pain was under control, and less about the here's how this may affect your relationship and your cognitive function. And those things just-- I don't recall them coming up. You had to discover them. Aditi Narayan: So you just mentioned something interesting that the healthcare didn't quite address how Judy's care was going to impact your relationship. So how did it impact your relationship? Scott Joy: Well, I mentioned that in some ways it brought us a lot closer together. That suddenly I felt, we felt, that we had something we needed to solve, to go through together, that she felt, “oh, all of that experience you have from Livestrong and the cancer community suddenly is relevant to me. It's not something you're off doing. It's now part of our life,” and I thought that was positive and healthy. Aside from the effect of the pain meds and how much she really sometimes was in a daze, when she was more alert and willing to talk, it was more open and more candid. And that was all good. I think the hardest part was, you know, we both were focused on, as I said, on the treatment, on the search for the cure, on the let's get through it. And we should have talked more about, “when one of us is gone, what does the other want?” I'm now navigating through the how can I continue to have Judy be part of the kids' life affect what we do as a family. Carrying on the traditions and all of the decisions that had to be made after her death about care for the kids and her own services and all of that. I would have loved to have known because she told me not because I can figure it out. And I can figure a lot of it out, because we spent 26 years in marriage and years before that. We met in high school, and we were high school sweethearts so all of that. I can figure a lot of it out. But I wish we had talked through more of it which is so hard to do because we don't want to concede. We're fighting to the end. And I didn't talk about the intervention, I guess, where the healthcare team and our minister brought me in and were trying to have some of that conversation about end-of-life care and all of the things that we should have in place. And I think that was frightening for Judy at a point where she wasn't ready to be scared that way. She needed to focus on I'm trying to get through the day here. But it left us with things that weren't said and done that should have been. It's so hard. Aditi Narayan: Yeah. It really is. Are there those things that you found yourself thinking about but you didn't feel like it was the right time to bring it up with Judy? Scott Joy: I had some of those times like out on my bike, right? So part of my keeping it normal was finding time— I wouldn't do the long rides. Normally, I would do a long weekend training ride, and I would maybe do an hour instead of half a day. But certainly, while I'm out, that's what my mind is going through is some of the what-if scenarios, and trying to push them out and saying I can't think about that but I have to. Yeah. So I did have some of that. And then it's, can I talk to you about it? Should I talk to you about it? And it never felt right. It was always, you're not ready for that, and I don't think it's the time. Mike Threadgould: We’ve set this series up about caregivers and the phrase caregiver. Do you identify with that phrase? A lot of people use kind of different terms to talk about this role that you take on in supporting somebody that's going through a disease. Does that identify with you? Scott Joy: It's an interesting question because I hadn't really thought about it until you posed it because caregiver is one that you can grab onto, like survivor, that initially this thing is that's a word that I can use to describe this. It's a shorthand and everyone will know what I mean. And then you start to think about it intellectually. And so what else does it mean, and how do I react to it if I think about it instead of just accept it? And it starts to sound a little bit more clinical. And I think how is that different from the healthcare professional role and what the nurses and doctors do? Aren't they caregivers? And does it feel more like “housekeeper?” So it doesn't have the same love to it that maybe I would want. And so I just think of— thought of myself— think of myself as Judy's husband. And that says so much more to me where it doesn't necessarily mean what caregiver does, but it's the word I would choose for myself still. And caregiver was just one that I accepted because it was handy. Mike Threadgould: That makes sense. And I think how you're saying if you think of yourself as husband and wife, just because one of you has something in their life that needs support doesn't change the fact that you're still husband and wife. And those relationships are built on love and support and doing whatever is necessary. So giving that change a label isn't necessarily of value to a caring relationship. It's interesting to think about it that way. Aditi Narayan:  You mentioned accepting the role, the title, and I was wondering did it feel like you had to feel certain things because someone was putting that role on you, that you are now a caregiver and you should be feeling these things, or you should be doing these things? A lot of “shoulds” involved there. Scott Joy: That's a really interesting question and wonder if I had more of those checklists and resources if I would've resented them. [laughter] I don't think I felt that way. I felt that it was a role that I needed and wanted to step into. I didn't resent it. I can see how one might, especially depending on where you are in your relationship with the person you're providing care for. I felt it was something that I owed her and wanted to give. But that's a really interesting question. [laughter] Aditi Narayan: Scott, we've talked a lot about your experience, a little bit about as a survivor, and then extensively about your role as Judy's husband. What is 1 word you would use to sort of try to capture that experience or describe it? Scott Joy: I would pick the word “whirlwind.” It's just the sudden storm of unexpected magnitude, and everything's circling around you and sometimes feeling like you're in the eye of the storm. And there are calm moments, but you know it's all still swirling around you. And it's a whirlwind, and it just tears everything apart but still moments of calm inside it. Mike Threadgould: And if you look at where you are now, are you still in a whirlwind? Do you feel like you've moved into some other one-word description of your emotional state? Scott Joy: I'd still pick the 1 word “healing” for where I am now. It's a long process of coming to terms. It's one of those things where it hurts to talk about it still, but it hurts a lot more not to talk about it. My kids and I have had some wonderful experiences since. I loved her, remember all of the things that we did together as a family. I think there's some mixed opinion on how much we should talk about and remember that, and I love it. And I think how much does it hurt them, and how much does it help them? I think they're starting to come around now where now my son, Eric, will talk more about it and put on the “We Remember Judy” t-shirt, just spontaneously. So I think it's a long healing process. Aditi Narayan: Well, Scott, thank you so much for being here. And thank you so much for sharing so openly and always being willing to share. I think your voice and your experience has healing to it, and I think that can never be emphasized enough in this journey. So thank you so much. Scott Joy: Well, thank you. Mike Threadgould: Thank you, Scott. ASCO: Thank you, Mr. Joy. Learn more about caregiving at www.cancer.net/caregiving, and find support and resources for caregivers at LIVESTRONG.org. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play. Cancer.Net is supported by ASCO’s Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.