EP. 32: CAREGIVING AT THE END

WITH ANDY CLINNIN

Oct 12

WITH ANDY CLINNIN

A caregiver discusses the experience of supporting a partner with terminal illness and lessons learned on cherishing everything that life has to offer.

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Episode Summary

On June 28, 2022, we released an episode featuring Ellen Dunphy, a 35-year old patient with a terminal diagnosis of gastric cancer who had been under the care of co-host Dr. Tyler Johnson. Ellen passed away a week later. Accompanying every step on her cancer journey was her husband, Andy Clinnin. In this episode, Andy joins us to share his experiences as Ellen’s caregiver and primary source of emotional support. Over the course of our conversation, we explore Andy and Ellen’s relationship from its beginnings all the way to her final days and after. Andy’s reflections on these challenging moments, perhaps paradoxically, has much to teach us about what it looks like to courageously make the most of life, however much of it remains.

In this episode, you will hear about:
• A synopsis of how Ellen came to be in Dr. Johnson’s care - 1:03
• How Andy and Ellen met, and their relationship leading up to her diagnosis - 6:44
• Andy’s perspective on Ellen’s diagnosis - 10:15
• What it was like for Andy to learn about Ellen’s diagnosis and how he adjusted to being her caregiver - 16:26
• Andy’s reflections on the experience of having Dr. Johnson as Ellen’s oncologist - 21:39
• How Andy helped Ellen think through her priorities at the end-of-life - 27:15
• How being with his partner until the end has changed the way Andy sees life - 35:46
• How California’s End of Life Treatment Act allowed Ellen to control how her life story ended - 43:14
• Andy’s advice for other caregivers on how to best take care of themselves so they may best provide care to their loved ones - 51:33
Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:03] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to the Doctor's Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build health care institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across health care, from doctors and nurses to patients and health care executives. Those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine. We will hear stories that are by turns heartbreaking, amusing, inspiring, challenging and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Tyler Johnson: [00:01:03] All right. Well, we are really grateful today to be with a very special guest who, unlike some of our recent guests, this is probably someone that you haven't heard of, but who we consider it just as much of an honor to have him on the show as anybody else. Our guest today is Andy Clinnin. He is the husband of Ellen Dunphy, whose story we profiled in detail in episode number 17. And just to give the super Reader's Digest version, though, I encourage everyone who's listening to this episode to go back and listen to that episode first. But just to give a sort of a timeline of events so that people know the story. I first met Ellen just a little bit more than two and a half years ago. She was a professional actress and I had somehow gotten roped in by the hospital to doing this recording. It was going to be used as like a training video to show other doctors how to have conversations surrounding difficult questions at the end of life.
Tyler Johnson: [00:02:09] And so I showed up one morning at a clinic in Redwood City and was there for 4 hours filming this video with an actress who I had never met before, whose name was Ellen. We filmed the video and then it was made into part of the hospital's training program. And then I really never thought much more about it. Six months later, I got called by one of my colleagues, Brendan Visser, who's a Hepatobiliary surgeon at Stanford, and Brendan asked me to come and see a patient in the hospital. As I was reviewing the patient's chart, I saw that the patient was a young woman who had been having some sort of abdominal pain and had been kind of referred from one person to another to another, had eventually had an endoscopy where they go down with the camera and look inside the stomach, which was not able to come to any certain diagnosis. And so eventually it was referred to a surgeon. And then Dr. Visser had taken her for a surgery where he basically put a camera inside of her abdominal cavity to look around and see if he could figure out what was going on. And then unfortunately, at that time, I discovered that not only did she have stomach cancer, but that the stomach cancer had already spread to her abdominal cavity in a way that it could not be resected and was never going to be cured. And so she went under anesthesia in preparation for the surgery, I imagine, know, thinking that this would turn out to be little, if anything, and woke up to the devastating news that she had terminal cancer diagnosis.
Tyler Johnson: [00:03:42] And so then I was asked to come and see her in the hospital to talk about what that diagnosis meant and what kind of treatment we might pursue. And sort of, as I was arriving at the room, discovered that the patient I was being asked to see was the same young woman who had acted across from me in this training video just six months before that. And so then Ellen became my patient, and I got to know her and Andy incredibly well. Over the course of the next two years, she got some initial chemotherapy that didn't work so well and then got a second line of chemotherapy that worked really quite surprisingly well. She had a window of about a year, a year and a quarter where she actually felt pretty close to back to normal and was able to go on some trips and other things. And then I would say around the turn of the year 2021, 2022, her health started to decline. And then earlier this spring, she started to become quite ill. And also a little bit earlier than that actually, she had taken a number of our interactions and some other parts of her cancer journey and turned them into a one woman play, which she wrote and then had professionally recorded and starred in. In an online production which is available. We can put the link to that in this podcast episode description anyway. So it made that one woman play and then earlier this spring began to feel quite ill.
Tyler Johnson: [00:05:12] We then had her on the podcast and interviewed her maybe two months ago or something like that. And just after we recorded that episode, she was admitted to the ICU and then eventually discharged home on hospice and and died a week or so later. And then her memorial service was held, two of them, one in Wisconsin and one here in Northern California. So with all of that as background, we thought that it would be revealing and helpful to some of our listeners if we could get Andy's side of the story. Andy is not quite the camera bug that Ellen is. He's not quite as want to seek the stage, and so he's kind of been in the background through all of this. But I can tell you, as her treating oncologist has been an incredible support and incredible presence at Ellen's side throughout this journey. I have this picture in my mind of Andy with notepad and pen poised next to Ellen at virtually every visit, taking notes, I'm sure, so that he could have written down the stuff that she didn't quite capture the first time. So, Andy, if we can, we'd love to get your insights and your side to all of the important parts of this story. I think before we talk about anything to do with the illness, can you just tell us a little bit about how did you and Ellen meet? What first caught your attention about her, and how did you end up becoming a couple? Sure.
Andy Clinnin: [00:06:44] Well, first of all, thanks for having me and also for those kind words. It's true. I'm not the camera bug that she was. I feel a little bit like a kid in his dad's office playing with the computer. This is all Ellen's equipment, so hopefully I'm using it. Right. But yeah, so meeting Ellen. So we met about 12 years ago. We both lived in Milwaukee at the time. She was about a year out of college. I actually had just gotten divorced. I just dropped out of a PhD program and I was dealing with a lot of wacky projects. I was trying to manage some bands. I was trying to run a music festival. I had a very weird life and I had maybe like 8 to 10 musicians sleeping on my floor all the time. So she basically moved in across the hall from me just randomly. And so I was this chaotic mess that I think was was intriguing to her because there were just so many things going on. And I felt like this, like older presence over there. And ultimately I shouldn't tell an oncologist this, but we would smoke cigarets behind the building and so we got to know each other.
Andy Clinnin: [00:07:53] Then I quit shortly thereafter and convinced her to as well. But anyway, that was that was our bonding. Ellen. You've met Ellen before. It's kind of like meeting a celebrity when any conversation that you're in is heightened and electric. The problems of your day to day life go away when you're talking to Ellen. We shared a lot of the same values. There's a lot of things we just did and didn't care about. She really loved the arts, music, theater. She's an actress. A lot of things she didn't care about, too. Didn't have any pets. Later on, we'd get married. We never had wedding rings. We actually didn't tell anybody. We were married for about five years. So really, she had this philosophy of this a la carte philosophy of life, to say the things I really like. I'm going to take a lot of the things I don't care about. I'm not going to take any of it really lined up well with the way I look at things. And that's really how we came together in the first place. We lived there for a while. I eventually talked her into moving to Chicago and then eventually out here to the Bay Area.
Tyler Johnson: [00:08:53] Okay, so let's fast forward then to January of 2020. I'm just genuinely curious. So she goes out to do this recording. In retrospect, was there like a did she come home and tell you about it? Was there? Did she complain about the doctor's terrible acting skills or absent screen presence or something? Or maybe it just didn't even come up because she was doing 20 gigs a week and and that was just one of them.
Andy Clinnin: [00:09:22] I remember it coming up. She did have a lot going on. She was at the time really focused on this standardized patient program. So she had over the last year or so, had kind of become the star of the show. And they'd been asking her to do all kinds of different serious illness program and end of life conversation. And so it was really one of a series. And you I don't think you were the only one that was new to the acting game across the across the table from her. So it really no offense wasn't that notable at the time, other than I do remember she hated the makeup. That's the one thing that stood out. Not to say she was vain, but like she had to wear a lot of I'm extremely sick makeup because it was a video and she really couldn't bear that.
Tyler Johnson: [00:10:08] Yes, I am 0% surprised it was not memorable. Well, so then to get to the harder part of the story. So she starts to feel sick that spring and then gets referred for a scan and a and an endoscopy and blood tests and all these things and eventually gets gets referred to. See Dr. Visser on the day that she was getting ready to go under anesthesia and go in with Dr. Visser before you got the results after the surgery. What was kind of the mood in the room or what was your guy's head and heart space at that point?
Andy Clinnin: [00:10:43] Like you said, those six months beforehand were were pretty weird. We'd both had medical issues before. Like, I had some stomach issues. She had some nerve pain in her feet. And there were things that seem serious at the time kind of disappeared. So we had in the back of our minds this idea that maybe this is transient, maybe it's something more serious, but it's maybe like an ulcer or colitis or something that is treatable, serious, but ultimately is not sort of life changing. And so as those months went by, things seemed to escalate and our anxiety about them escalated along with them. Like you said, she went for a number of scopes. We were always of two minds about it. One of them was the sort of the naive attitude of people in their early thirties, which is, well, I'm going to live forever. And so whatever this is doesn't really we'll figure it out, but it's going to be fine. And the other is that increasing anxiety. We'd had a number of meetings with a lot of people. I'd started going to the meetings because there were just a lot of them, and she needed she needed more emotional support than than she would have for just a normal doctor's appointment. So I looked back at the notes and really. Everybody laid out exactly what they thought. You know what we think is happening, what we want to rule out. I even have a set of notes I looked at a couple of days ago where it said "Working diagnosis linitis plastica" which is ultimately what she had. But we didn't actually walk away with that in our heads. We just said, Oh, we want to we want to look at some cancer stuff because maybe we want to rule it out and we'll get to a diagnosis by exclusion. But it was really all there. It's just because we were of these two minds and living in between these two states, we could never really reconcile them. And so we never really knew quite how to feel. As we got closer to July, that ramped up a lot. We got the second scope and we got the the laparoscopy on the on the books to look around inside of the abdomen. And her symptoms just kept getting worse and worse. She swelled up a lot, the acid. So the cancer leaking fluid into her abdomen became really uncomfortable and really, really noticeable. She looked about seven months pregnant. At the time, we weren't sure how reversible any of these symptoms were going to be, this swelling. About a week before the surgery, I actually start Googling some of the words that I've heard in some of these meetings, and I end up really, really concerned. I Googled my night is plastic. I read as an amateur reading WebMD. I go in a lot of different directions. I see studies that talk about four month lifespans. I read that this is perhaps the disease that killed Napoleon. These are not useful pieces of information by any means, but they were the things that were rolling around in my head.
Andy Clinnin: [00:13:46] Ellen was also getting quite nervous. I really wanted to get her out of the situation in what felt like maybe the last time that we would have kind of a normal life. So I actually booked us some time in a in a place down by the by the beach in Big Sur. So we actually got out of town for a couple of days beforehand, which was really nice, and the surgery and getting bumped forward. So we left right from the beach to Stanford on Monday morning for her to get the laparoscopy. Now. That surgery was probably one of the more anxious days of my life because I drop her off. The pandemic has already started, and so I'm not in a waiting room. I don't have a lot of information about what's going on. I get a little text message from Stanford that says the patient is entered the operating room, the patient has left and is now in recovery. But that's really all the information I have throughout the day. And again, I'm bouncing around between these two worlds of everything is going to be fine. And this is really catastrophic. I think I watched a bunch of episodes of Supermarket Sweep because I wanted to return to my childhood when I didn't have to think about death so often. So. That's me sitting in my apartment alone all day.
Andy Clinnin: [00:15:01] And I finally get a call from Dr. Visser, and that's when he tells me I don't remember exactly what he said, but some of the words were really so clear in my head. Cancer terminal, aggressive, short. Come here. And this is the moment at which in the movie version of this, I would expect to like, break down or not know what to do. But it really became sort of dreamlike at that point. I could sort of see myself from outside of my own body, and I just sort of went through the motions. I said, okay, thanks, I'll be there soon. I went and packed up a few things I wanted to bring with me, got on the car, drove to the hospital. It was weirder being in the hospital because at this time I think there were really no visitors at all, especially in the recovery room where I was at. So I was the only person who was not a doctor or a nurse in this whole place. And the thing that was weighing, I think, most heavily on me at that point was that I knew about this Doctor Visser knew about this, and maybe nobody else did. And Ellen hadn't had either. She hadn't woken up yet, or she had just woken up and was still really groggy from the anesthesia. But I knew that she was going to find out in a couple of minutes. And that was really, really weighing on me. It was a crushing feeling. You know.
Tyler Johnson: [00:16:26] It really is, I can say from a doctor's perspective. Some kinds of doctors, I think, don't really have much in the way of the kinds of moments that you're describing. Right. But as an oncologist, we face these kinds of moments with our patients all the time, possibly without maybe exactly the same kind of drama that you're discussing, because it's not the same sort of like. Okay. She's been under anesthesia and now it's going to be the moment of revelation when she wakes up. But there's still a we have bad results from a scan or a cancer that we thought was gone has now come back or here are the biopsy results. And one thing that you realize pretty early in the process of doing this is that it's what you initially think is going to be sort of a straight line of communication between you and the patient. Any time there are friends and family members actually becomes a triangle or something more complicated than that. Right. But we very seldom hear directly about what it's like to be the other point in the triangle, partly because, understandably, inappropriately, the other people who are there are mostly there sort of holding up the arms, so to speak, of the person who's getting the diagnosis right. It's all about being behind them and supporting them and giving them what they need. But I. I would like to know for you. What was that like? Like take us inside your head, in your heart, in those what I imagine must have been really, really difficult moments.
Andy Clinnin: [00:18:04] Yeah. So at that point, like you said, I, I was trying to. Hold her up for it. I was trying to make sure she understood it and. Basically be with her as she came to terms with it. I really I wanted to have control in that situation. Like I knew about it. It wasn't happening to me. So I felt that it should affect me less. That's probably a foolish thing to think, but I thought that. I would be able to have some excess capacity to help her with it, because it'll be harder for her than it will be for me. That was totally wrong. I think I tried to do that really unsuccessfully. So really what that moment was for me was just sitting with her in that room, being there, you know, being able to hold her hands and. There's nothing you can say. Really, There isn't. When you hear this is terminal. There's nothing you can do about it. This isn't one of those moments where there's a new piece of information and maybe it'll go well, maybe it'll go poorly. We'll find out later. This is you go from being invincible, going to live forever to your. Nearly already dead. And so there's no consolation, really. There's no it's going to be okay. All you can really do is be there. And so. That's really what I did.
Henry Bair: [00:19:34] So you mentioned that when you first learned of Ellen's diagnosis, you didn't have that stereotypical movie moment of breaking down, falling on your knees and screaming, "Why?" Into the void, and instead, you describe it as trancelike or dreamlike, but did that moment ever come? That moment of anger and bargaining and trying to wish it all away?
Andy Clinnin: [00:20:02] I think that it did, but it did slowly over a really long period of time. I think in the moment it was just shock and so it didn't really register. By the time Ellen got out of the hospital, or at least was more up and up and about within a day or so, she actually felt a lot better. They got five liters of fluid out of her, and so she was more mobile. She had better energy. She felt more like herself, even though she was now almost immediately on chemotherapy. And so it was really easy to sink back into a denial. I think if we heard that news and then she felt worse or even just the same, I think it would have been something we had to reckon with more directly. But it became almost there was an academic state and then there was our sort of lived reality, which were almost incompatible as we viewed them. We knew she was getting chemotherapy, we knew why, but it just didn't match with what we were doing day to day, even after she was out of the hospital. And chemotherapy is not easy on people, and she had a really hard course of it. And so it wasn't lost on us that a lot of these side effects, some of which were really serious nerve damage, her hands would lock up extreme fatigue. She did have to deal with those, but it was still we we could hold on to this idea that it was going to be okay somehow and sort of push down that notion that that no, this really is the the beginning of a descent for a for a terminal case.
Tyler Johnson: [00:21:39] When I got word from Dr. Visser that he wanted me to come and see you guys. And then when I figured out what the connection was, which I. I can't remember if he told me or somehow, but I knew. I know that I knew going into the meeting that I had met her before, although only once and not very well, very briefly. But I guess for you guys, as I remember, it was quite a long meeting the first time we spoke in the hospital. What about what about that visit? What was that like for you?
Andy Clinnin: [00:22:08] One of the things I remember distinctly about hearing about you, that you were going to be the oncologist in in the recovery room right after she found out the news. I do remember talking to Ellen about whether or not it would be a good idea for you to be the oncologist. And my advice to her at that point was this This is the thing I felt the best about of my input on that whole day. In my mind, it was sort of like, if you have a good friend who works at an oil change place and you need to get your brakes fixed or something, you want to go to the friend, right? Because he's not going to tell you your carburetor is broken or something like that when it's really not. And so I'm thinking, Well, you already know this guy. You can get sort of the good guy discount and he's going to give it to you straight. Even though I was aware of the, like, VIP care study where, you know, if you get the special treatment, it doesn't actually mean you're going to have better outcomes. But still, I was looking for looking for a better oil change that next day or a few days later when you came by the room and were there for what felt like three or 4 hours, it might have been significantly less than that, drawing normal distributions on the board and talking through the basics of cancer and how this works in your body and how this was going to work in her body.
Andy Clinnin: [00:23:25] A few things stood out. One, I really appreciated how you brought the conversation down into not a technical jargon level, but in a real conversational. You used words that we would use to describe parts of the body and things that would happen to them, which which I thought was was really helpful. You also took a ton of time for questions, which was great. You put up with me clacking away on a computer in the corner, taking as many notes as I could. I also remember being struck by just a lot of these key pieces of information. We we didn't really want to know a prognosis from you and. Knowing how complicated the case was, how young she was for this diagnosis, how generally rare this is for people like Ellen. You weren't eager to say, Oh, here's a really specific number. You probably don't want to do that when people don't want it anyway. But it was still something floating around in the back of my head of like, Well, what should our expectations be like? Should we be really wrapping up things right now? Should we focusing on having good experiences? But I just remember the the best case and the worst case that really stood out.
Andy Clinnin: [00:24:42] The best case being, well, this goes really well. Maybe something in the order of two years, which Ellen really took exception to, very understandably to me. And then the other was the worst case, which is maybe a short is a month or two. I'm assuming those. Not all of those two months would be would be really good, fulfilling months. And so I really walked away thinking. It's going to be largely on me to make sure. Ellen knows what's important to her, what her goals are, and. Can lean on my help to accomplish those goals. Because if it really is a situation where it's two, two months, four months. I want to make sure that. Those are going to be eaten up by the things that are convenient or the people that are the loudest. After you left in the next couple of days. We had a lot of conversations about what that time should look like, and we already had lots of people as we started making those phone calls to family and friends, people that were reaching out, wanting to come out and visit and sort of be doing the mental math in our heads of like, okay, well, if I have eight weeks, you know, this person is generously saying, I'm going to come out, but do I want to spend two of those eight weeks with just this person? Well, no, probably not.
Andy Clinnin: [00:26:06] No offense to that person, but I really wanted to make sure she had a principled approach. And if she could do only one thing that she did, that number one most important thing, if she could do only three things, she could do the three things that are most important to her. See the people that are most important to her have the conversations that are going to be most important to her. So that's really the probably the biggest takeaway for me is just that I needed to help prioritize and then facilitate. And that worked itself out in a couple of ways. A big one was communication. Putting this in a way that the family could understand, that friends could understand, and then sort of being the gatekeeper as more information came in. There are always new tests. There are always new symptoms. There were new good things, too. Later on, when she would do things like write this show, she would get back a little bit into painting. She would do some monologues. There were dribs and drabs of of of positive things. But I wanted to make sure that she wasn't getting pestered by different people all the time and use up all of her energy on stuff like communication. So I sort of became a one man PR office as well.
Henry Bair: [00:27:15] So you talked about how one of your roles in supporting Ellen was helping her prioritize the most important things in life. But I can imagine that being a very challenging thing to do when Ellen's prognosis was so unclear and mercurial. For instance, while some of Ellen's earlier treatments didn't work as well as expected, some of her later treatments worked better than anyone could have hoped for. So I'm wondering how you grappled with setting those goals and prioritizing things in the face of these ups and downs.
Andy Clinnin: [00:27:54] I would say not great. There are there are different phases to it. I think early on. It took us a while, like I said, to to bring these two different realities. We were living together in any way. I don't know that we ever fully accomplished that, but I did help her sort of make a list of. What are the most important things? And it's stuff like travel, it's family, it's friends, and it's part. And we literally have a list. It's still on my computer of a short number of things that that you really wanted to do. And we just started taking them off and we really were aggressive about it. We had her parents come out and visit just a couple of weeks after that, after the the diagnosis. And she got out of the hospital. She was back painting again. We actually went to the Grand Canyon. We were at the Grand Canyon two months after her diagnosis. It was sort of a critical thing for us to get to the Grand Canyon, because when she first started having symptoms was it was a trip that we were taking through the Southwest. And when we went to the Grand Canyon, we were there in the middle of a snowstorm. So we were literally standing at the edge at another point, not able to see any of the canyon. And so it really felt poetic for us to escape fate and stick it to the Grand Canyon and be there.
Andy Clinnin: [00:29:16] There were wildfires and there was obviously COVID. And so it was hazy and we were wearing masks, but we were still there. What does Bukowski say? You can't beat death, but you can beat death in life sometimes. And that's what we tried to do. So that was the early stages. Like you said, the first round of treatment was really aggressive and not ultimately that successful. As we got close to the end of that, things got really hard and. I don't think either of us felt like we really had an that she'd really gotten to a point where she. Like I say, I felt good about where she was at, but felt acceptance, felt like she'd done like the most meaningful things that she wanted to. We got to around Christmas of that year and she started doing things like writing a big Facebook post to tell everybody what was happening and really talking more in terms of, well, this is the end now than the we're here for the fight. Luckily, that second course of treatment worked really, really well, I think. Dr. Johnson, I remember you saying that this is the probably the biggest rebound that you'd ever seen from a second line of treatment. And that was really a blessing for a number of reasons.
Andy Clinnin: [00:30:34] Number one, obviously just being her health, rebounding and giving us much more time, but also. In that time, she was able to really change her attitude towards the disease and towards the life she wanted to live during it. What we were able to do is see friends and family more, travel to more places and really knock through that list. That first list we made with maybe six or seven things on it. We actually by March or April the following year, we're able to do everything on the list. We saw the friends and family that that she wanted to see. We traveled to the place. The immediate places she wanted to see did make the projects she wanted to do. The great thing is when you go through your whole bucket list and then you create like a second bucket list, it ends up being filled with things that you don't actually care that much about. And that's a really. You know, I wouldn't recommend terminal illness to anybody, but if you're going to do it, it's really great to get to that point. When you say, well, the really obvious things that I wanted to do, I did them. I would love to be able to do them again, but I was able to suck all the marrow out of out of life in this one particular aspect.
Andy Clinnin: [00:31:50] And it really got us to the point where her family would come and visit again. And it wasn't an exercise where I was sitting down with her saying, Okay, what are your goals? What are the conversations you want to have? Because she'd done that two or three times already, they could visit. When I asked her that same question, What are your goals? She would just say to spend time with them. And that, I think, was a really beautiful point because it wasn't it always felt heavy. She was always still dying, but there wasn't anything left unsaid. There wasn't any unfinished business she needed to resolve. She could really just be with them. And the same was true with things like travel. We were luckily able to get to some more places. We went back to Wisconsin to see more family. We ended up going to Hawaii. Her rebound in treatment corresponded with the lull right before the Delta variant in the pandemic. So the couple of weeks when people could go to Hawaii without any weird restrictions, we were able to jump on that as well. And she was able to spend time there with this renewed attitude of I'm just going to be here and enjoy what I can and not feel this added pressure that she would have felt a couple of months before.
Tyler Johnson: [00:33:01] Yeah, you know, it's really interesting to hear you articulate that. I read this essay many years ago, which I have kicked myself 100 times since because I didn't write I don't know which essay it was, and I haven't been able to find it since then. But it told a story about a man who is having symptoms, goes to the doctor, undergoes some tests, ends up getting a biopsy, and the doctor calls him back a week after the tests and says. I'm so, so sorry you've been diagnosed with. This is terminal cancer. And here's what your prognosis looks like. And so the man goes home and initially is in shock and goes through this sort of period of grieving, but then within a few days actually feels sort of woken up, feels like, oh, my gosh, I've been I haven't even been living my life. I've just been sort of going through the motions and like completely. Changes. It's not just that he wants to go spend $10,000 at a fancy hotel because he's going to die anyway, right? It's that his whole way of engaging with the world changes. And then in this story, he gets called back a couple of weeks later and the doctor says, Oh, my gosh, I'm so sorry. Your biopsy got mixed up with somebody else's biopsy. It turns out that your biopsy was benign.
Tyler Johnson: [00:34:24] And so actually you don't have cancer and you're fine. This is just some little lump that's never going to do a second to cause any problems. It's not going to do anything. And so now the man who has had these two weeks to have the entire inside of him transformed has to grapple with how does he integrate what he learned actually mattered to him during this period when he thought he was dying into what now appears to be a full life that still lies ahead of him. And I guess I bring all of that up by way of saying that I think people who either have a loved one that passes through the valley of the shadow of death or who are lucky enough to be doctors or nurses or whomever taking care of these same patients, obviously, obviously it is. I will never claim as an oncologist that I know how it feels to be a cancer patient, because clearly I don't. But having said that, I have watched a lot of them at close range. And I think that what you're saying is true, that to me, as an outsider, it appears to happen on sort of two levels. So the initial level is about particular things, right? It's about making a bucket list or going to a particular place or, you know, checking things, checking boxes off.
Tyler Johnson: [00:35:46] But then after even once those are finished. Then there's this softening and this kind of re-arranging, right? Where it's not so much that there's a list, it's just that there's a totally different way of understanding what matters and a different way of understanding, I think, what life is all about. And so I guess, you know, as you guys progressed through this journey together and then maybe especially as you came into this spring, so you had sort of this it was kind of a roller coaster, right? Like you had this the initial shock, things got really hard. Then as you mentioned, she had this very unlikely recovery that I would never have predicted, where she had this fabulous response to second chemo. And then things were kind of normal-ish for a year or so. And then February, March of this year, things started to get harder. She started to get sicker. But this time there was no no third rebound. As you guys entered that sort of twilight phase together, what did you as her closest confidant and closest observer, what did you learn about how to see the world differently or what you would take away that sort of the things that being with her vicariously in that experience taught you?
Andy Clinnin: [00:37:08] I think it's it's mostly about how maybe this is a part of this is just getting older. But it became very clear to me that a lot of the the sort of pretense with which I used to live my life doesn't matter at all. The concerns you have about how other people view what you do and how you live your life, none of those things really matter. Even things like money. I mean, it's I remember being dead broke when Ellen and I first got together. We were in our twenties and. We would we would struggle to figure out who is going to like by dinner that week. And we end up eating a lot of like leftover sandwiches from from our jobs. When you don't have money, it's it's really hard. But once you get to a point of comfort, these things stop mattering. I know that I've I've been over the last probably ten years, I've spent a lot of time working and trying to work my way up the ladder and being a really good corporate citizen. And not to say that I'm going to stop doing that entirely, but it becomes very clear to me the the cost of making something like work your entire identity. There are a lot of people and institutions out there that will offer you a definition for your life and. The easiest thing to do is often just to take it is to say, hey, you know, you're a whatever. This is your level at work.
Andy Clinnin: [00:38:36] If you want to get to the next level, here's the things you can do and here's the sort of career path that you can proceed on over the next five years, 20 years, 40 years. It's easy to look at that and say, well, people that know what they're talking about and know how people do the job that I do today have laid out a path. I can just do that. It doesn't mean that the things. About your job and the things about that next job are actually things that matter to you. And I see myself and I see people around me not being thoughtful enough sometimes about how that may or may not align with what they actually want out of life. Because all these things are going to come at a cost. You can you can work your way into a much fancier job than you have today. But it's also going to come with more hours and more stress and the work will be different. It may or may not be things you like to do more or things you like to do less. And that was one of the big lessons for me of just I need to have my own sort of personal philosophy and what's important, my own value set that I then apply to these things that I see rather than just sort of blindly importing from from the places that want to to push them on me.
Henry Bair: [00:39:54] You know, you talked about how, For a large part Of the last two years, you have grappled with the uncertainty by taking it sort of one step at a time. Make a list, try to get through that list. And fortunately, it sounds like Ellen and you were able to get through pretty much everything that was meaningful in point to her. But I know that towards the final weeks Of her life, it became apparent that her time was going to be very, very limited. And what was once uncertain perhaps wasn't as uncertain anymore. What was going through your mind as you approached those final weeks and final days?
Andy Clinnin: [00:40:40] Yeah. So I would say over the last maybe nine months of her life, I was always playing catch up. Being a person who is there with her sort of morning, noon and night every day, it was really hard for me to see gradual changes. I would see them when a friend would come by who came by once a month and we could talk later. They could sort of tell me what they saw. If they were willing to do so. But it just wasn't obvious for me. The times when I would come to those realizations were usually when I realized something was no longer in the cards. It would be like travel. So we ended up going on a trip last October. I didn't know at the time that was going to be our last sort of meaningful trip, and it took me a number of months of suggesting to Ellen like, Oh, hey, well, the next thing we can do might be blah, blah, blah. And she would sort of entertain the idea. But it wasn't clear until many months later to me that, no, we won't be doing any more trips. That's that's no longer really an option. She can't be away from home for that long. She doesn't have the stamina for it. Later on, it be true if things like going to the beach or going for a drive and then even later going to the park or going on a walk.
Andy Clinnin: [00:41:58] Eventually things like being out of bed on her own. And I always felt like I was a few steps behind, which may have been good, because it let me keep the sort of optimism which I think was probably good for her. You don't want the only person consistently next to you to sort of be pessimistic about what you can and cannot accomplish. And so I do think I was an effective cheerleader because of it. But I did always feel behind I was I always felt like she was able to to come to terms with where she was at before I did. And so I was always sort of trying to read between the lines to see, okay, well, what do you know that I don't? But I also learning the lessons that we learned along the way. I wasn't. I wasn't really distracted by that too much. I just wanted to spend good time with whatever that meant at the time. Whether that was down to just watching a movie or at a certain point it was She's only awake for a couple of hours a day, really just being there with her, maybe like reading a book tour or something like that. As the definition changed, just making sure I could be present for it.
Tyler Johnson: [00:43:14] I realized at some point we have three kids that. One thing that is probably weird about our house is that my boys learned from the time they were very young that my wife and I would have discussions about people who had died. Right. Which I then came to realize that that's not something that most people probably talk about over the dinner table or whatever. But just because of the nature of my job, that was just part of the conversation. All of which is to say that in some ways when you go into medicine, it's kind of like entering into a monastery almost in the sense that you kind of become ensconced in your own world where things have their own way that they work. And then you have to remember that they don't work that way outside of there. And one of the things that I've had to remind myself about as a doctor, especially as an oncologist, is that for the most part, the Western world has largely sanitized death. You know, death is sort of in this closed room with an opaque door, and we just kind of don't talk about it. Right. And so if it's not too much, Ellen, as I mentioned early in the podcast, after being admitted to the ICU for the final time, was then discharged to home on hospice. I visited you guys at home a few days before she died. I guess I just am wondering for you being there, sort of keeping vigil at her side. What was it like to see someone you loved so much take her last breath?
Andy Clinnin: [00:44:49] Yeah. So this is another one where there are kind of two levels to it. One is the almost call it selfish, which is I always want more time. I always want more good time, but even when it's not good at some level, still always want more time. And so tt's just heartbreaking, Right? It's you're realizing that this life that you've led, this person who you are more aligned with than anybody you've ever known is over. And it's hard to deal with it. It's been two months now, and I don't think I've totally come to terms with it. There's still plenty of moments now and I, like, I think that she's just around the corner in the apartment or she'll be able to tell me where the stamps are, but it's just not true. And so that is that was absolutely heartbreaking. The other level, I think. This is why another reason I'm glad we got that extra time for her to really come to terms with the situation is she was really able to clarify what it is that she wanted and what she wanted her death to look like. What she wanted most was as much good time as possible. And then for that dissent and that final period where she doesn't have the autonomy, where she doesn't feel like herself or she isn't able to do the basic things -run around, go to the bathroom, get dressed- wanted that to be as short as possible. And Circumstances, While they weren't favorable in general, did allow for her to do that. In California, we have the End of Life Treatment Act. And she was able to avail herself of that, the aid in dying. And so when she went into the ICU, which was maybe 3 hours after you guys recorded the podcast together. At that point, she I think she knew that that the game was over. I was actually when I listen to the podcast episode, I was really surprised at what I'd heard. Going into that recording, I was really concerned whether or not you guys were going to have anything to work with at all, because really she'd gotten to the point where we weren't able to have meaningful conversations of more than two or 3 minutes at a time. But I think Ellen is just the kind of person and the kind of professional actor that is going to be able to in these really key moments, turn it on. It was true before when she did her show, Imaginary Endings. She was not in great shape going into that. I was really concerned about whether she was going to pull it off, but we got a great recording. Immediately after the recording there was a huge drop and she just wasn't the same afterwards.
Andy Clinnin: [00:47:43] Same is true of this podcast, so I'm really glad that this sort of grand artistic statement she was able to put into the world. But she went in, we went to the to the ED, we're very quickly in the ICU. And she made it clear to me, I think on that second day, the morning of the second day, that she didn't want to be there. She didn't want to get discharged against medical advice or anything like that. But but she was basically done with the formal medical part of of her cancer experience. And so being the person who is being pushy on her behalf, I spent the next couple of days, I think, arguing might be the wrong word, but debating with a lot of the ICU staff about what is. What is sufficient for her to go home. There were a lot of issues. We came in with about four different serious symptoms and they came up with some new ones while we were there. And so it was very tricky for us to figure out, okay, well, what is. What is considered stable here, because we know she's going to be discharged into hospice and we know it's not going to be long after that. And we also know that she wants to do things like have her parents come out one last time.
Andy Clinnin: [00:49:00] And so we wanted to make sure that was not going to happen in the hospital. It was not going to happen after she had any ability to communicate meaningfully. And so I think she was only in the hospital maybe four or five days when we discharged and then started hospice the next day. And I think she was in hospice for a little over a week while her parents were there. The the thing that really made it not okay, but at least got me to a level of acceptance was seeing how ready she was. I saw her have her last interactions with her parents. I was there when she had the last phone calls with her siblings and with their best friends. And I remember after each one, I had a conversation with her about how does this make you feel? Like, what are the emotions that are that are going through your head right now? And after each one, I think she was present for them. She knew what she wanted out of them. But all she was able to tell me that she felt afterwards was relief, which told me there's nothing left on the table. She's not want of of anything else out of these interactions. And I think on the very last day, so on the morning of the 4th of July, we watched a movie because there was really nothing much left to do or much energy to do it with.
Andy Clinnin: [00:50:21] There was an Emma Thompson movie, which is an actress that she really loves. And I put it on. I was thinking, okay, if there's one thing that's going to get her to crack a smile or or really be engaged, it's going to be this. And just watching her watch this movie, which was a fine movie with a really good Emma Thompson performance. There was no spark. She didn't feel anything from it. And that, in addition to the friends and family interactions, told me. She has given in her life what she's going to do. And there's really not much. There's really only suffering from here on out. And so it made me really glad that this End of Life Treatment Act was an option for her, because it was clear to both of us that. Additional time that she would spend here sort of naturally was just going to be miserable time. She probably wouldn't be awake for much of it and she wouldn't be the the person that she wanted to be during that. And so I think it was it's merciful that we have that and that she was able to avail herself of it.
Henry Bair: [00:51:33] Andy, you have been so generous with your time and so open about discussing these very difficult moments. Your unwavering support for Ellen as a caregiver is truly inspiring. I'd love to know what advice you have for other caregivers about how to appropriately take care of themselves so that they may best take care of their loved ones. You know, I understand that not all caregivers will be looking after people with as serious of an illness as Ellen's. But nonetheless, whether you are taking care of a parent with dementia or your child with disability, I'm sure there are parallel, emotional, physical and perhaps even spiritual challenges that you can speak to.
Andy Clinnin: [00:52:22] Yeah. So that's hard. This is the most common advice I would hear from people is make sure you're taking care of yourself. It is almost an impossible task because you're sitting there thinking, okay, well, am I going to go play some tennis or something while I'm thinking about what's happening at home? Early on I was really bad at this. I think I went into super caregiver mode. I was doing laundry like four times a week. You don't need to you don't need to do everything. Everything there might be to do around the house. You really need to pace yourself. It's more often a marathon than a sprint, and you do need to sustain yourself somehow. I knew at the end of this. I was going to be alone, right? I was sort of waiting at the end of the world with this person and I was going to be rescued from it, but she wasn't. And I needed that time. This time that I'm living right now to have some meaning to it. And so I wanted to make sure I could. You know, continue hobbies and relationships. And it doesn't have to be complicated. You don't have to take a class. It doesn't have to be a really immersive thing. I like photography, so it's easy to go out and take pictures of something. It's easy to go for a walk.
Andy Clinnin: [00:53:39] It's easy to have friends that you talk with about things that are not cancer related. Friends that you joke around with, friends that will not get really uncomfortable with your jokes about your really heavy situation. These are things that are worth cultivating and are really the things that are sustaining me now and getting me through the harder days. So I can't tell you what it's going to be, but you need to invest there. But also, being a good caregiver is extremely hard. You're a person like I'm not sure how medical folks deal with us because we're we're having our own emotions and we have our own perspectives that may or may not align with what the actual patients perspectives are. We're amateurs that you're going to somehow train to do some diagnostic and treatment work as you see fit. And by the end of this, I was giving daily injections. I was taking blood pressure, like all kinds of things that a trained professional probably should have been doing. But I can be at least the first line. And that's all complicated and hard. I wouldn't have been able to do that without without getting a good night's sleep, without having friends that make me feel like a person and not just a cog in a cancer machine. So really making those investments is just critical.
Tyler Johnson: [00:55:02] You know, I know that you from conversations that I've had with you, I know that you have felt during the last few months, especially like you had a almost a responsibility to try to get out into the world, whatever message Elon would want out into the world, mostly by facilitating her being able to do that right, being on the podcast and making the the play and all the rest of it. But here at the end of your own podcast episode, what final words do you think Ellen would want those who are listening to learn and remember?
Andy Clinnin: [00:55:43] Yeah, well, I do feel like a much less eloquent person than Ellen, so I don't know that I'm the best representative for it. But the two things I would say, one is echoing her sentiment of if something is wrong, go ask a doctor about it and don't rest until you get a satisfying answer. Be pushy. Ask more people. No one is going to advocate for you better than you, and so make sure to do the job. Don't take unsatisfactory or incomplete advice as the final word on it because sometimes things are okay, but sometimes things are really serious and you don't want to be on the other end of that side of it. And the other is. Make sure you're living a life in accordance with your own values and make sure you're clear on what those values are. I've had plenty of periods of time in my life when I. Like I said before, didn't really either didn't know what my values were or just sort of adopted them from the people and the things around me. And that's easy. You can do that. You can live your whole life that way. Nobody's keeping score. Nobody's going to remind you, Hey, is this what you really want? You can waste it. You're allowed to. It's on you to not. And so figure out what not wasting it means for you. And do it.
Tyler Johnson: [00:56:58] All right. Well, Andy, thank you so much for joining us in Conversation. We we really appreciate having spoken with you and all our best to you and what we know is still a difficult, tender time.
Andy Clinnin: [00:57:09] Appreciate it. Thanks, guys.
Henry Bair: [00:57:13] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program, notes and transcripts of all episodes at the Doctors Art. If you enjoyed the episode, please subscribe, rate and review our show available for free on Spotify, Apple Podcasts, or wherever you get your podcasts.
Tyler Johnson: [00:57:31] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient or anyone working in health care who would love to explore meaning in medicine with us on the show. Feel free to leave a suggestion in the comments.
Henry Bair: [00:57:45] I'm Henry Bair.
Tyler Johnson: [00:57:46] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.