“Caring for every patient. Learning from every patient.” For ASCO President Dr. Monica Bertagnolli, this is more than just a presidential theme. To put action to words, she went out to local communities to speak with patients, caregivers, and oncology professionals. She and other ASCO members are responding to patients’ concerns and, at the same time, they are learning more about the challenges that exist in getting quality cancer care. These sessions were called “ASCO in the Community: Listening and Learning from Our Patients.” At a town hall session held in Sudbury, Massachusetts, Dr. Bertagnolli sat down with her long-time patient, Jim Emken, and his wife and caregiver, Laurie Emken. First diagnosed in March 2007, Mr. Emken has multiply recurrent dedifferentiated liposarcoma. He and Mrs. Emken live in the Boston metropolitan area. The following interview was adapted from their conversation.
Jim Emken: [Dr. Bertagnolli’s physician assistant at the time] Michelle said, "In clinic, enjoy the good times in between the bad." And that's what they try to do. They try to make it as good as they can in between. And then you have the procedure and the recovery but savor the good times and they try to do everything they can, so you have the good times.
Laurie Emken: So we will take a trip in between not knowing how much longer we have.
Jim: We buy airfare in advance because you don't know what's going to happen, but we always get trip cancellation insurance just in case something pops up. And the other thing is, you've told me a bunch of times when there's been a recurrence and I was all worried and it looked bad to me, but you said, "This one's not going to get you." And that was very helpful because for those times, I didn't have to worry as much. And even in the worst case, if it does come back, I probably have half a year before it gets me, no matter what happens. So it's not like I'm going to walk out and expire that night or that week.
Dr. Bertagnolli: So how did you have the courage to deal with everything you've dealt with? I am so in awe of the two of you.
Jim: It hasn't been easy at all on me or my wife. She's the caregiver. She's a great support, and I think it's even harder on the caregiver than the patient. I mean, the pain from the surgeries, recovering, and getting back on your feet isn't easy, but it's a different kind of pain and struggle to be the caregiver. I'm asleep and recovering, and she's worried all the time because she doesn't know what's going to happen. And it just wears you down after 12 years.
Dr. Bertagnolli: So how are the kids? Your youngest has never known anything else.
Laurie: Right. They're very resilient. They have maturity in different ways than their peers. Things don't bother them like they do for their peers. My children appreciate things. I have a boy and a girl, 3 years apart. They're both very close so if there's no playdate, it's not a problem because they play together because they're used to having to rely on each other. With all the surgeries that Jim has gone through, we couldn't always have playdates at our house when he was recuperating for months at a time. So, they bonded and they're close, and they rely on each other. We kind of focus on the good: my daughter getting all As in honors classes and just doing the best that she can, and my son trying to learn as much as he can from Jim, the handyman things. But he's motivated. He'll listen to Jim for hours on the teachings that Jim wants to do with him.
Dr. Bertagnolli: Do they know? How much have you shared with them?
Jim: We've been honest. As they get older, you can say more, but we say, "There's a surgery, and we don't know how it's going to turn out." And every time we say there's a doctor's appointment, they get worried, and I'm like, "No. It's just to get checked, but there's not going to be any bad news from this visit."
Laurie: Or when he goes in the hospital, they're pretty nervous.
Jim: Yeah. They're nervous. As they get older, they get more worried about it. But we have told them that I could die eventually. We try to put it that way.
Laurie: But you've come home pretty ill from the hospital many times, so they see that, but they've also learned to be patient. "We can't go out today because Dad can’t," or "Dad needs more time to get ready to go out." And we might be delayed an hour or 2. They're so used to that. They're extremely patient. More than I am. [laughter] I mean, I'm the one that's supposed to take the longest to get ready, right? But we give Jim that.
Dr. Bertagnolli: But you've been able to spend time with them, too. Many fathers haven't had as much time. I remember we've had some conversations over the years about you being home with them when they were younger.
Jim: Yeah. To me, it's important to have time with them. And whatever I can do to prolong my life so I can have more time with them, even if I'm uncomfortable and my quality of life isn't what I'd like, it's still more time, which is important for me. But more importantly, it's important for them that I'm still around an extra year or 2. And we think they know I'll likely die from it in some number of years, but we don't tell them, "It's going to happen this year." We just say, "It's a serious surgery, and it's going to be tricky." But it's worked out—
Laurie: Because we don't know.
Jim: No. I mean, you never know.
Laurie: We don't know ourselves.
Dr. Bertagnolli: We say for every surgery, "We're going to win," right?
Jim: I try to tell them that. I mean, I try to set a little bit of expectations so they weren't lied to, but I don't tell them how bad it could be. But I do say, "It is a risk and it's worked out all these other times, but we can't promise that's going to happen every time. And eventually, it may not. They might not be able to do the same type of thing anymore," which I know is the case. You run out of things—you can't just keep doing the same thing.
Dr. Bertagnolli: So what would you say to other people who are facing what the 2 of you had to face? What would you tell a friend who came in and who was going to have to face some of the same things you have?
Jim: So we both have a perspective on that because she's the caregiver and I'm the patient. What I try to do with myself is I do think about and contemplate the worst-case scenario, and I'm upset about it and it really bothers me. And to say that's not true would be a lie. But then I say to myself, "Well, I've put enough attention to that and I'm not going to dwell on it." And again, I do have meltdowns and I do get upset and it does come back out again, but I try not to focus on it, and I try to focus on the positive and the hopeful because I think that's what's going to improve my health. And it's like, why should I do something that's going to make me feel worse mentally or affect me physically?
If I get really upset mentally, that upsets my digestion. So, I try not to. It's not foolproof, but it's important to give it some time to acknowledge and think about the seriousness and the bad times. But then just literally put it in a bubble and try to cast it off and have it float away. And then I think about the positives, so the glass is half full, not half empty. It doesn't work all the time, but the more I do that, the more I think positive, the more that's what pops into my head. If I dwell on the negative scenarios, what could happen, then that's what keeps popping in.
So, it's very practiced—whatever you need to do to get to that point. Some people, they go for long walks. Some people, they meditate. Some people, they do tai chi. Some people, they just go to a movie every week or have a date night every couple days or something. Whatever it is you need to do, read a book, there's value in getting away from the reality and not thinking about it, watching a good movie or reading a book, but there's also just thinking positive. The more time you can spend hopeful and positive and look back and say, "Well, it worked out all these other times," or "Most of the times, it was almost nothing." Once they did the surgery and recovery, I bounced back and I really never knew that it happened. I recovered 95% which isn't bad a lot of the time, so I hope that will happen this time, if it happens again.
Dr. Bertagnolli: I love that image. Put the bad stuff in a bubble and—
Jim: Cast it away.
Dr. Bertagnolli: —cast it away.
Jim: But that's after I've thought about it awhile and examined it. To not acknowledge it, to hide from the fact you could die from it would be a mistake, and to not discuss it with your surgeon, your caregivers, your spouse, even your children to a small degree. But you think about it, you give it enough time, and then you cast it away. Just try to go with the positives. That's what will make my mind keep going back to that. Again, it's not easy but the longer you do it and the more you do it, the better it works. And it doesn't happen right away, but you need an outlet, whether it's walking or playing a musical instrument, something that gets your mind totally away from it, so you're not even thinking about it while you're doing that task helps, as well as just focusing on the positive.
Dr. Bertagnolli: Who knew? Who knew that you could practice and get better at doing this? So, Laurie, what about you?
Laurie: Right. Well, I always tell people the word “hope” I think is the strongest word there is. Don't ever give up hope and keep that in mind. Even as a caregiver, I worry about Jim and I just have to think, "Well, things will work out, you know, the hope." But many years ago, I used to be a planner. I would have my whole month planned out in the calendar, this, this, this. Now, I just get through week by week.
Dr. Bertagnolli: Is that good?
Laurie: Oh. I'm still a planner, but I've adjusted. So, I've had to change, because I don't know how Jim is going to be next week. I can kind of pretty much think, "The rest of the week, he's OK," but I can't go beyond that. So, I tell people when they've had a major incident like cancer, "If you're afraid to look into the future, just focus on today."
Because I've had a lot of days when he's been really sick and I'm like, "How am I going to take care of the kids by myself? How am I going to manage the house? How am I going to keep my job?" Because I'm really working hard to keep my job to be able to afford the medical insurance and the house. And I'm like, "I'm just going to focus here, now. Let me just get through these days." Because the future does scare me. So, whenever that scares me, I pull back and I just look at 2 days. Don't go beyond it. Just stay in the moment in that first couple days. Because I'm really nervous to look a year out right now. So, I'm just here in this week and that's all I'm going to look at. I don't volunteer for anything that's that far in advance because here I am.
Dr. Bertagnolli: Do you think the kids have learned to live in the here and now, too?
Jim: I don't know if we've discussed it with them. I do try to tell them, "Let's enjoy today. Let's not worry about—" I mean, I do that for myself. I wish my cancer was discovered sooner, before it was as extensive but I'm like, "Well, wishing that and worrying about that's not going to help. I can't change it." So that's a waste of time. And then I worry about the distant future, like a year out, but I can't control that at all. But what I do is I know today, I'm OK and I'm going to live in the moment and enjoy it. So, I know I can control today and today's OK. And then once tomorrow comes, well, that's now today so I can just be positive for that little time, 24 hours looking forward. And I know if my next CT scan's not for 3 months, well, I'm not going to get any bad news for 3 months.
Laurie: Yeah. We have that window. We plan around those. And we try to extend it. If it's really a 3-month CT scan, we go 4, 5 months because now, our window just opened. But the kids, we keep them busy in activities which keep them focused. So, we don't really give them time to look that far, just like I'm doing, too.
Jim: The way our daughter found out I had cancer—we didn't tell her at first. Maybe she was 7 or 8, but once they start to read, stuff comes in the mail and they eventually figure it out because it says "cancer society" on it or "Dana Farber Cancer Institute," and they see things on the screen or printouts that you leave laying around, or they hear things on the phone.
Laurie: So, the journey changes as they get older and understand more. But definitely, it changes you, and you look at life very differently. Yeah. And never in a million years I would have thought Jim would've got sick. Never. He was fit, active, eating well. Would've never had guessed, and it changed our lives. We're on plan B and C in our life, and you just have to kind of play with the cards that you're dealt.
Jim: And the good part is we've met a lot of people that have helped us who we never would've met and experienced their kindness and love.
Laurie: Some even here tonight.
Dr. Bertagnolli: Oh. Well this was just so lovely. This community you have here is beautiful, really beautiful. I'm so glad we got the chance to come here.
Laurie: Yes. Oh, and the other advice I would give people is that I include in my life people who make me feel good about myself. So, whether it's friends or family, if somebody's not supporting me, making me feel good, yeah, they're not part of my life. I have narrowed down, and I've made some really hard decisions, but I need to be on my game every day to support my family. So, the people that are helping me through are those who are very important to me now. So, don't let anyone bring you down. You don't need them in your life. That's how we survive.
Dr. Bertagnolli: You know this, I've said it before. You're my heroes. I've told you this many times, Jim, when you were in the hospital. You're my hero.
Laurie: And we feel like you're our hero. Whenever we see this woman here—she has saved him multiple times, and it is because of her that my kids still have their dad.
In 2018 to 2019, ASCO held a series of ASCO Presidential Town Halls with local groups across the United States to hear from patients, providers, and the general public about real-world barriers to quality cancer care and to talk about ways to provide the best care to every person diagnosed with cancer. These events were free and open to everyone. Learn about this town hall series.
Whether you were able to attend an ASCO Presidential Town Hall near you or not, we welcome comments from patients and caregivers about your experiences with cancer.