Episode Fifteen: The Physician Patient

David Zaas was diagnosed with leukemia on Valentine’s Day of 2017.

In the weeks that followed, he faced many challenges—breaking the news to his sons, undergoing chemotherapy, and learning how to be a patient. At his side for every bit of this was Aimee Zaas, his wife and like him, a Duke doctor.

David Zaas, MD, MBA is president of Duke Raleigh Hospital and associate professor of medicine in the Division of Pulmonary, Allergy, and Critical Care Medicine.

Aimee Zaas, MD, MHS is director of the Duke Internal Medicine Residency Program and associate professor of medicine in the Division of Infectious Diseases.

David and Aimee came to the listening booth to talk about the cancer experience and how it gave them new insights on what patients focus on when they’re ill.

See episode transcript below.

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Dr. David Zaas: It’s hard to believe that it’s coming up on two years in February. Things are different now than they were.

Karishma Sriram: That’s Dr. David Zaas, president of Duke Raleigh Hospital. This conversation was recorded last October, talking about events that started in February 2017. Before then, Dave’s life was pretty busy.

Dave: But there was something that made you never question your own mortality. There’s a certain amount of being a physician, you’re busy, you got kids, you got work, you’re invincible. The thought of getting sick, it was hard to even imagine that as a possibility. Obviously getting diagnosed with leukemia back on Valentine’s Day of 2017 sort of shatters that myth that you’re invincible. And makes you question a lot of things that you never thought of. I would have said prior to that day, right, you never thought about not seeing your kids grow up, you never thought about what all those things would mean.

Karishma: This is Voices of Duke Health, I’m Karishma Sriram. Today, how a physician learned how to be a patient.

Dr. Zaas was joined by the other Dr. Zaas, his wife, Aimee. Aimee’s the program director for the internal medicine residency. I asked them to tell me a little about what their lives were like before leukemia.

Dr. Aimee Zaas: Zero to sixty, all the time.

Dave: I thought you were going to go all the way back to the point of when we met in med school and you were chasing me.

Aimee: I wasn’t chasing you!

Karishma: Oh please tell us!

Aimee:  No no no. That’s his version of the story. The real story is that we were very good friends in med school and he asked me to go out to dinner and I didn’t realize it was a date. And it turned out it was a date. So during dinner at some point he had like his wine glass-

Dave: I think it was after the first bottle.

Aimee: Yeah, in front of his face and he said something like about like, what do you think about us being more than friends, and I was like what? What?

Dave: But everyone in our whole medical class knew it was a date, you were the only one.

Aimee: I set him up one of my best friends like me, like outside of med school friend. So we started dating after that got married fourth year of med school, couples match for residency, were chief residents at the same time, couples match for fellowship.

Dave: So I’ve ridden coattails a long way and knew that I could always come in second or third in the class but always behind her. But doing it’s good to have coattails.

Aimee: Not true. But you know we have been at Duke since the early 2000s, had our kids here.

Karishma: Their kids, Jake and Jonah, are now 15 and 13. So for the Zaas family, life was full steam ahead. But in January 2017, Dave started noticing things were a bit off…

Dave: You know I actually remember the first phone call to you. So I was skiing in Park City with some high school and college friends and boys trip. Everybody had their kids. And I’m still competitive enough to prove that I can out-ski my teenagers. But I remember calling home, and I said I got the flu. I just had chills and I wasn’t feeling well. And of course calling the ID doc, you were like, no you don’t have the flu. You’re skiing at 14,000 feet and you’ve been going all day. You don’t have the flu. And I was convinced that it was, you know it’s winter, it’s respiratory viruses. I’ve always been a person that when I get a cold it stays forever and that’s really all that it seemed that it was, was just a cold that I couldn’t shake.

Karishma: But over the next four weeks, there were some other troubling signs.

Dave: I kept trying to run and I kept getting frustrated that I couldn’t run and couldn’t get myself in shape and would try to work out harder. But it was, it just wasn’t my normal endurance. And then I remember I had a skin rash, I remember showing you one morning and I asked if you changed soap or something in the laundry or what else was bothering my skin, because I had this skin rash that was different and new and didn’t really know what it was. But it wasn’t until the second week of February that I think we both knew something was wrong, more than that.

And then I don’t even think I told you that my gums- like I hate flossing, she knows I hate flossing, I hate teeth in general. And I started flossing because my gums were bothering me enough.

Aimee: I’m convinced I would have figured it out if you would have just told me that.

Dave: And I remember, actually, the night that I really knew something was wrong. I carried a—I don’t even know if I told you this one—a thing of laundry upstairs to Jonah’s room.

Aimee: You carried laundry upstairs, no way.

Dave: And I remember, Jonah said, dad, you’re really short of breath. And I said God that’s really strange, for walking one flight of stairs carrying a full laundry basket, why am I so visibly short of breath? And the next day I saw one of our cardiologists, Mark Leithe, in Raleigh and I sort of described to him when I was feeling like. Any like any good cardiologist of course it had to be my heart. So he convinced me I needed a stress test.

Karishma: So Dave got his stress test, and it was totally normal. So was a chest x-ray. But he also thought to check his complete blood count.

Dave: And I said, and by the way, just draw a CBC for me and let’s see what my blood counts, and see if I’m anemic or anything else that could explain it. And that was a Friday.

Aimee: We got the chest x-ray back on MyChart and it was normal. And the lab hadn’t been released. So you know if you have a lab drawn your doctor asked to release it so you can see it in MyChart. And clearly we know ways around this, but you’re not supposed to do that. We’re like, no, we’re not going to look. We’re going to do this the right way, we’re not going to get fired for like looking at our own chart. You know we’re going to just wait till he releases it, we’re not going to bother him on a weekend. So he released it on Monday, it was Monday the 13th.

Dave: And I remember, I texted you a one line phrase, and I said, I need a bone marrow biopsy.

Aimee: And with a screen shot of like these terrible, terrible labs. And so I was in my office upstairs when I got the text. And so I-

Dave: You texted back OMG, OMG. I still remember it.

Karishma: The Zaases jumped into action. Aimee got in touch with Dr. Lou Diehl, a leukemia specialist, and he agreed to see Dave the next day. Until then, it was back to their unrelenting schedules.

Aimee: And you had to go give a talk that night at the opening of the cancer center or something like, absolutely, ironically terrible, so.

Dave: Yeah, I was speaking at the Duke Raleigh Cancer Center. I remember the next day actually you told me to stay home from work and I said, no, I’m going to go to work. We did have some town halls and acted like nothing was- and Dr. Diehl put us on at the end of the day.

Aimee: Yeah and we were supposed to go see Chris Rock.

Dave: I wanted to go see Chris Rock after the doctor’s visit and you wouldn’t let me. I said we can get diagnosed with leukemia, because we knew it was leukemia at that point, and then- but we already bought the Chris Rock tickets, I said, we might as well go see the concert but you weren’t going to let me go see Chris Rock after that.

Karishma: So the Zaases went to their appointment, and the diagnosis was what they feared. But remember, they have two sons, who were in 5th and 7th grades at the time. And they realized they couldn’t tell them—not yet.

Dave: Our older son was doing the middle school trip to D.C. the next morning. So there was two reasons to keep it from him, one is, we had no idea, that moment, how do you tell a teenager, what do you say? And two, you couldn’t tell him and send him to D.C. for three days. So that night, trying to get them to bed, trying to act normal when you have this in the back of your mind was probably one of the hardest moments of all of it, because you’re sitting there like I want to be honest with my kids, I don’t want to be keeping things from them. But I don’t know what to say and I haven’t had a chance to think about it. And he’s all excited for his D.C. trip that I want him to go on with his friends the next day.

Aimee: And like once you know, you know, like up until you know, you’re just- you know, normal, well we were never normal, but you know, like normal family, you know normal seventh grader, you know normal fifth grader or whatever. And like as soon as you know, you’re not that person anymore. So like if he has three days to be normal, like who really cares. You know this is going to be fine.

Dave: It was… we got him to bed early.

Aimee: Under the guise of getting up at 4:00 in the morning to drive to D.C.

Dave: And the younger one is always easy to get to bed early. And you just, I just remember trying to hold back tears while you’re putting him to sleep and just trying to act like it’s any other night.

And then I remember going back to the couch and it was- I couldn’t read on it at all. I remember looking at one article and I got like a paragraph into it and you start looking at like a survival curve and others and you’re like, this is not productive. So with a few exceptions where I’ve actually read on things, and every time I do I regret it over the last two years, I’ve almost read nothing and every time I do, she yells at me because it makes you emotional and not necessarily rational, cause-

Aimee: You can’t read an article from 1990.

Karishma: So for Dave, reading articles was more harmful than helpful. And it was bigger than that. At that moment, he didn’t want to be a physician. He just wanted to be a patient.

Dave: I think it’s a coping skill a little bit. One is, I think you have to have trust in who is caring for you and that’s both your caregiver as well as your physicians and others. And we talk a lot about you know, we want patients to make informed decisions. In hindsight, being the patient, I’m not sure I would ever use that language again. We want patients to have trust and we want patients to be educated. But I wanted to be led. I didn’t want to question and figure out what was right. I wanted someone to be able to tell me here’s what you should do, and here’s why, and yeah I was educated about it, but I was much more focused on all the other components of life than trying to question and figure out you know was there different treatment I should be doing. That’s where I needed at least personally to just have faith that they were going to find the best options for me.

Karishma: The morning after Dave got his diagnosis, Jake left for his trip to D.C., a no-phones-allowed trip, and Jonah was off to school. Dave and Aimee hadn’t broken the news to either son yet.

That same morning, Dave was admitted to Duke Hospital. And their plan was to bring Jonah to the hospital after school.

Dave: And he tells the story pretty well of being- realizing he wasn’t going home when he left school. But coming to mom’s work isn’t that strange or abnormal, but coming here to the hospital and then being told he was going to see me. And I think he could see in your face how emotional you were and that something was wrong. It was a hard ten minutes to get through, a hard conversation. And I think we both were breaking up a lot. What he laughs at us for is that at the time, is when we described to him you know, dad has leukemia. And he could see how upset we both were. But he had no idea what leukemia was. And it was only later when we sort of started using the word cancer and others, but I think we forget a little bit especially both being physicians, right, that you talk about using plain language, plain language for a fifth grader-

Aimee: It’s not leukemia.

Dave: Is not leukemia.

Karishma: Meanwhile, Aimee got a call from Jake’s teachers, who were with him on the trip to D.C., and they said:

Aimee: Jake has a fever to 102.

Dave: Can you come get him?

Aimee: Can you come get him? And I was like, well, let me tell you what’s going on. They’re like, we’ll keep him. We’ll load him up with ibuprofen and don’t worry about a thing.

Karishma: By this point, Aimee and Dave were in Baltimore. They’d managed to get Dave in a clinical trial at Johns Hopkins. At the end of Jake’s school trip, a family friend offered to bring him up to Baltimore. And Jake? He still didn’t know anything. When his ride got to the hospital, Aimee went down to get him.

Aimee: So kind of extract a sleeping Jake from the car and he kind of is like, wait where are we? Why are- what’s going on? And so then by that point we knew that the goal for Dave was to get a transplant, a bone marrow transplant and that the protocol was what’s called a haplo transplant, which is like a half-match, which is usually- you know, if you’re a kid it’s your parent, if you’re a parent it’s generally your kid. And so what had transpired in like those past 48 hours was that this was what Dave needed. And so by that point we knew that Jake was going to be the bone marrow donor. I kind of pitched it to him about, you know, how sick Dave was. But in all of that you know, you will get to be the hero. So he’s like, OK, let’s go! You know, like what do I do, what do I do, let’s go get my blood drawn, let’s go, how do I do this.

Karishma: So Jake got to see his dad, and then he got a lot of blood tests done.

Aimee: I mean it’s definitely- there’s nothing easy about it. But that piece of it, made that part of it a little bit easier, because in all of these things, it’s really good to have a task to do. So that got to pivot some of the moment from you know, what’s going to happen to what is a plan to sort of fix things that are going on.

Karishma: So having a plan was helpful for Aimee. What wasn’t, was the uncertainty.

Aimee: You know, the hallmark of a internist, you’ve got to care, you’ve got to be curious, you’ve got you know always want to know why, and you have to have comfort with the fact that you’re never really going to know what’s going to happen or what the right answer is. And you know I’m pretty decent at being a doctor most of the time and I thought that I was comfortable with uncertainty. But I think it’s that, when it’s your own uncertainty, it’s weird. I think I’m a better person, I think Dave will say he’s a better person for having this happen. All things being equal again, would be OK without that personal growth. But we’ve got so much out of all of this, too, and kind of still do.

Karishma: And part of that is a much deeper appreciation for her Duke community.

Aimee: One of the many things that I say about Duke, people at Duke really do care about each other and that it’s a really wonderful community. People are very generous with their time, they’re very collaborative, you know, they want to know you as a person. But to know that and to actually see it in action are really quite different. And his team completely stepped up, stepped in. And my team here and everyone just really you know are like, OK, we’re going to figure this out. And I wasn’t on leave, I got to have the luxury of being here part of the time and being in Baltimore part of the time. And everyone around just did so much more when I couldn’t do, and you know, we kind of figured out what I could do and what I couldn’t do. And you know I can’t imagine not being here. Just the way that people stepped up and all of our friends and friends of friends and that kind of thing, it was- we couldn’t have done it without that.

Karishma: Dave’s treatment was successful. After a few months of chemo, and a bone marrow transplant thanks to his son, he went back to work in the summer of 2017. It hasn’t been all smooth sailing, but most importantly, Dave is now healthy and cancer free.

Dave: I probably always imagined other patients when they were sick or worried about themselves. But being the patient going through it, there’s actually very little time that you actually worry about yourself, or at least from my experience going through with it. You worry a lot about others around you. You worry a lot, and we’ve talked a lot about, you know, kids or worrying about Amy and others. But there was very little concern of you know, what does that mean for me. It made it easier to say, you know, how do you worry about what’s next? Well, you worry about what you can control, right. Well how am I going to keep myself in shape. How am I going to keep my weight on, how am I going to talk to the kids and try to explain to them what’s going on? But you’re much more externally worried about those around you and other things than the impact on yourself on the patient.

Someone asked me, were you afraid you were going to die? And I said, you know, I don’t actually ever remember having that thought. What kept me up at night more was, Jonah’s having his bar mitzvah coming up here in December, right, you’re sitting there saying alright, we just had our older son’s bar mitzvah am I going to live to see our younger son’s bar mitzvah? Are you going to live to see them get through high school and college? It wasn’t like a internal fear of you know what’s going to happen to me. And I’m not sure I ever would have expected that so much of what kept me up at night was worried about other people more so than myself.

Karishma: Thank you to Dr. Zaas and Dr. Zaas for sharing their story.

To learn more about cancer care, research, and clinical trials at Duke, visit DukeCancerInstitute.org.

Published by Anton Zuiker

Communications Director for the Duke Department of Medicine, longtime blogger and leader of BlogTogether, and co-founder of ScienceOnline.

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