Kristin Flanary and Dr. Mark Lewis | Conquer Cancer, the ASCO Foundation

Dr. Mark Lewis:
This podcast is brought to you by Conquer Cancer, the ASCO Foundation. Our mission is to accelerate breakthroughs in lifesaving research and empower people everywhere to conquer cancer. Welcome to Your Stories, a podcast where we hear candid stories from people conquering cancer. I am your host, Dr. Mark Lewis.

November is Caregivers Awareness Month, and there is no better time to dedicate our episode to the unsung heroes, the partners, parents, and friends who stand beside the person living with cancer every step of the way.

I often reflect on the powerful conversations we have on this podcast, and one from two years ago still resonates deeply. It was with my next guest, writer and advocate Kristin Flanary. Kristin's story is one of profound resilience. She cared for her husband Will, whom many know online as Dr. Glaucomflecken, through two harrowing bouts of testicular cancer and a sudden cardiac arrest that nearly took his life. Thankfully, Will, thanks to Kristin, made a full recovery and is thriving today. Out of that challenging journey, Kristin and Will created a powerful mission: to transform that experience into education and advocacy. While Will brings medical humor to millions of people online, Kristin, better known as Lady Glaucomflecken, is on the front lines passionately advocating for caregivers and co-survivors. She teaches healthcare workers about the critical patient and family experience and is a tireless champion for CPR, AED use, and sudden cardiac arrest survivorship. Her work promotes humanity, empathy, and a healthy sense of humor in healthcare.

When Kristin last joined me on Your Stories, we spoke about co-survivorship and what it truly means to be a caregiver. Her insight fundamentally changed how I perceive and practice medicine. I am delighted to welcome her back to the podcast to reflect on that conversation and to talk about how she and Will are doing today. Kristin, thanks so much for coming back. Like you said, it is like seeing an old friend, and let us just start with the basics. Where are you joining us from today?

Kristin Flanary:
I am at home here in our little makeshift podcast studio in the Portland, Oregon area.

Dr. Mark Lewis:
As I told you when we started recording, I really do feel like a pretender to the throne here. You are far and away a more consummate communicator and podcaster than I am, so thank you for agreeing to do this.

Most importantly, I think we have learned through our lives that there is nothing more important than health. If it is not too intrusive, how are you and Will doing?

Kristin Flanary:
We are doing great. It is a little ironic you asked today because he has come down with something that he is actually not feeling well today, but it is nothing serious. So no, we are doing well overall. You never feel fully comfortable claiming that, but at least for right now we are good.

Dr. Mark Lewis:
Well, with your experience, that is perfectly understandable, and we wish him a speedy recovery.

So listen, this is also a catching-up episode for not just us but our listeners. Again, the last episode we recorded was extremely popular, and I think really struck a chord with this audience. So what has changed in your world since the last time we spoke?

Kristin Flanary:
Gosh. Well, how long is this podcast? Let us see. I think we spoke towards the beginning, at least, of my work advocating for co-survivorship. I have done a lot more of that in the meantime. Will and I have started a podcast together, as you mentioned, and our Glaucomflecken pursuits have grown. We have got all sorts of things. A newsletter now. We have got a live stage show that we perform that is a tragicomic memoir stage show. So if that does not tell you what it is about, I do not know what will. That is called Wife and Death.

What else? We have moved since we last spoke. This is a different home. We have combined households with my parents, which is always interesting. But speaking of caregiving, they are helping us with the children now, and then as they age, they will be able to age in place with help from us. It is just kind of a nice way for everybody to care for each other in different phases of life.

Dr. Mark Lewis:
Well, thank you for that update. You have clearly been so busy and productive. But one of the things I want to say to you, and I have found this about your husband but you as well, is I really admire the way you both use humor as a Trojan horse. I think it is definitely evident even in the name of your show that it is one of the healthier coping mechanisms, but it is also a vehicle for addressing really serious topics and literal life and death in the case of your travails as a couple.

On that note, I really meant it when I suggested we talk again. You introduced me to the concept of co-survivorship, this idea that a caregiver of a person with cancer is more than "just a therapeutic ally" and certainly more than an errand runner, but also a survivor of this trauma themselves. But for those who did not hear the first episode who might be hearing this for the first time, can you tell us how you came to use this term and what it means to you?

Kristin Flanary:
After Will's cardiac arrest and I did CPR on him, that was all obviously very traumatic. I am actually writing a book right now to go into detail about all of this, but to give you the short version, I have discovered in the time since that I actually had a pretty severe episode of dissociation at the time. Obviously, I knew what the internal experience was like at the time, but I did not know that that is what it was. So to try to process it, I wrote this piece I am sure we mentioned last time called "The Quiet Place" because for me it was very difficult to access language, even my own thoughts. It was all just sort of foggy in there.

I am a person who makes my living with marketing and communicating and writing and public speaking. So to not be able to access my language was a very big problem for me. It was also pretty distressing. To just have part of your brain just stop working and be aware of it is a very weird thing. And so I was looking around for just like, “What is happening to me?” Because I am ever the nerd at heart, and I have a background in cognitive neuroscience. So even then in that time, I remember kind of wondering like, “Which parts of my brain are going offline? What systems are involved here? What networks?” Clearly could not do anything about it at the time.

Since then, I have done a lot of research into “What was that?” And I have learned that it was basically dissociated PTSD is what I was suffering from. But in my search at the time, how do you Google that? You know? So I did not know how to find help or resources or answers. And so I just was kind of stumbling through rabbit holes on the internet. This was back when MedTwitter was very active. You could find different people working on different things, just kind of jumping around from profile to profile and who everyone was connected with.

By doing that, I stumbled on a paper by Katie Dainty and Kirstie Haywood talking about "forgotten patients," and that really struck a chord. That is what I felt like. They were talking about in the context of cardiac arrest because they are resuscitation researchers. That led me down looking into her work some more, and I was watching an interview she had done, and she used the word "co-survivor" in addition to forgotten patients. And then I was like, "Oh, yes. Absolutely. That is definitely me." Both of those things kind of sent chills down my spine of like, finally somebody gets it. I have a name to be able to use to explain. I have some words to say why this is bothering me so much. Because I am not the one who almost died, so why should I be so affected? That really put into context for me, “Oh yeah, it happened to me too. It just was not in the same way.” So that was very therapeutic to find those terms and to have that box to put things into to be able to put context around this really ambiguous experience.

Dr. Mark Lewis:
That is so well said. You and I have so much in common, I think especially in our relationship to language. Sometimes when I am really struggling emotionally, I find it helpful to try to put my feelings into words. But in the other direction, like you said, when you come across a term that actually so accurately describes something you are feeling, it is just an absolutely incredible sense of resonance. I know in German famously you can construct these compound words and sort of try to arrive at that feeling. But it sounds like when you heard co-survivor, you were like, "Ah, yes, that is me, and someone understands me and identifies with me.”

But from the time you first heard that term through your ongoing work, I am just curious, how has your sense of being a co-survivor changed over the years?

Kristin Flanary:
It is a complex relationship. At the beginning, it was therapeutic like I said. It felt like a diagnosis. And it was therapeutic in the same way in that when you have a diagnosis, now you know what to do about it. So at first it was just validating and allowed me to know how to move forward, know which direction to orient myself. And it still is that. I still feel that way about it. But now I also wear it with a badge of pride a little bit. This is not what I would have planned for my life, but it is how my life happened. And it is a huge part, it turns out, of who I have become. So now it feels like an identity a little bit more than just a diagnosis. And it also feels a little bit like a banner. I carry my flag throughout the land shouting at everyone who will listen because it was such a meaningful thing for me to find that word, and so I just want to get the word out into the mainstream for other people to find it when they need it.

Mark Lewis:
Well, I appreciate you contributing to that awareness. I loved several things you said there. Interestingly on your comment about the diagnosis, just to interject a little bit of my own practice for a second. In my work, and this is going to sound I think rather sobering to the audience, about 85% of the patients I meet, I am never going to be able to cure them. And I actually disclose that in the very first visit. And what is interesting in the Venn diagram of overlap here is some of them say, "You know, Dr. Lewis, just actually knowing what's wrong, having the correct label, the diagnosis so to speak, is its own source of comfort, interestingly enough." So again, like you said, as you came out of, and I do not want to put words in your mouth, but some sort of dissociative fugue and kind of realized what was going on with you, I think there is power in that because like you said, once you know what is going on, then you can actually do something to address it. And you have gone one step beyond that, which is that you are also advocating for other people.

This is a very kind of, I guess, long-time horizon, but do you see over time, is there a better understanding do you think of the challenges of again, not just the cancer itself, but of those people who are caring for patients with cancer?

Kristin Flanary:
There is still a long way to go, but I think that there is movement. I am sure doing everything I can to try to move that needle. I have such mixed feelings about the term “caregiver”, “caregiving,” and it is because most caregivers are also, and maybe first and foremost, co-survivors or co-patients of these things. But when you call them a caregiver, one, it reduces the experience to just one piece of it. But two, that piece doesn't tell you anything about their own life or their own self. It just tells you what they are to the patient. It tells you what job they are doing. A caregiver can also be taken on as an identity, and I think for some people that is what feels the most comfortable, and that is great. Other people though, it is like, "Well, that is true I guess, but that doesn't feel quite right." And I think it is because there is more to that experience that is not reflected in that word.

Dr. Mark Lewis:
That is really well said. I think I mentioned this to you before, but I am going to repeat myself kind of on purpose, is that so much of healthcare now is literally viewed and delivered through the electronic medical record. And speaking of beautiful writing in the healthcare space, Abraham Verghese, who is obviously such a brilliant author, wrote this great article in the New England Journal that was relevant back when it was published, I think 2008, but frankly seems almost prescient to what we are dealing with now, called “Patient as Icon, Icon as Patient”. And what he was warning us about, even then, was that we are being very reductive and rather than actually taking care of the person in front of us, their flesh and blood, we are actually interacting with this sort of electronic avatar.

My point in saying all of that is not to make any sort of novel observation about the EMR, which your husband has also done a great job of satirizing, it is that I find there is very little space for the co-survivor in that sort of electronic ecosystem. Like if I wanted to find out information about you as someone that was helping Will, you might be buried in a social history or a contact page, but that would essentially be it. And unfortunately, I think that leads to less visibility. And again, it is a problem because if we are not seeing you in all places in the medical record, then unfortunately we are not thinking about you as much as we should either.

Kristin Flanary:
Right. And you know what? In addition to that, even when I was in those rooms, I was invisible.

Dr. Mark Lewis:
That is what is truly, I think, indefensible. I told you this before too, during COVID, the very first two years of COVID when visitor restrictions were so stringent, I all of a sudden became aware through their absence of how present my patients' loved ones had been before. You really do not know what you have got until it is gone. And so from then on, I have actually been really, I have tried to be very conscious about acknowledging anybody in the room, whether it is in the hospital or in the clinic. But you are right. It is one thing to overlook a co-survivor in the medical record. It is entirely another to pretend like you are not there when you are physically present.

Kristin Flanary:
Yeah, and it was never like malicious or on purpose or anything. It is just like in their mind, I am kind of irrelevant. They have news to deliver to the patient. The patient is going to have questions, so they are looking at the patient. But I was like, "I have a question. This is my life too. Can I ask some things?" The word I like to use the most is ‘overlooked’, because I do not think anyone is doing any of this intentionally. I think it is just forgotten like she said, the forgotten patient.

Dr. Mark Lewis:
Well, I think there is this phrase, "Never attribute to malice what can be attributed to," I guess in this case, some "benign neglect." But I will tell you, my practical tip for any physicians or healthcare professionals listening to this, one is, of course, when you go in the room to be courteous and introduce yourself and try to establish relationships. The other thing that I found really helpful is to acknowledge that the patient themselves, while you are right, they are going to be the main partner in conversation, they actually may not be able to remember everything that we are saying.

And I remember you saying very memorably to me, "Listen, my husband went through a cardiac arrest. His memory was literally impaired, and I was sort of his peripheral brain." So in that particular case, I think it was extremely important that you be acknowledged. And so my practical tips there are: again, make sure you know everyone in the room; allow recording. All of the effective interactions I have had with my physicians and surgeons have ended by saying, "Does anyone have any questions?" and not just the patient. And that is an invitation for other people to pipe up. It seems like such a small detail or even script to follow, but I find it highly effective.

Kristin Flanary:
Definitely. And bonus points if you look at everyone in the eyeballs. Just do a quick sweep.

Dr. Mark Lewis:
You guys and eyeballs. It is definitely a theme there.

Kristin Flanary:
I know. Can't escape it.

Dr. Mark Lewis:
Now I am going to ask you for some practical advice. As a co-survivor yourself, what do you think people need to know about providing tangible and lasting support to people like you? I have my own thoughts on this, but I often wonder, if someone else asks, "What can I do for you?" I think that is different than them being kind of discrete and proactive. Do you have any thoughts about that?

Kristin Flanary:
Oh boy, do I. I try to tell people, I always think back to what that experience was like for me in those moments. There are just so many things at the same time going through my head. But some things are more acute than others. So what the co-survivor is going to be capable of will differ based on that, based on all sorts of things. Everybody is an individual and individual circumstances. But when things were acute, like after the cardiac arrest, for example, I wasn't capable. Everyone would say, "I hope you're finding help for yourself. Go to therapy," or whatever. I was like, "I can't." There are just so many steps involved in trying to set up an appointment with a therapist if you are not already seeing one regularly. So that takes a lot of, it seems simple in good times, but that is actually using a lot of executive function, and that was offline. Like I literally was not capable of following through with any of that.

Dr. Mark Lewis:
Yes. Yes. That is right.

Kristin Flanary:
You are making them think about, “Okay, what could you do? Let's see. What are you good at? What do I need?” And again, they may not be capable of that, and even if they are, they do not want to do that. They have so much they are already dealing with. So just like, do stuff. You do not have to make a big deal of it. You do not have to intrude. You can just say, "Hey, I was at the store and I picked up some things for you. I'm dropping them off on your porch on the way home, and just want to let you know they're there. Was thinking of you. Grabbed this." Anything like that.

And then if you are close enough and comfortable enough to be in their home during those times, go do those dishes. Do that laundry. Pick up those kids. Just all the mundane everyday tasks. They, annoyingly, do not go away when you have a medical issue. So those are great things to help with too.

Dr. Mark Lewis:
Yes. I loved the way you put it. I think we sometimes get sort of hung up on, "Oh, it has to be some sort of grand gesture." The way I think about it is kind of two-fold. I think about, you know, Maslow's hierarchy of need. What are the things that we all need to do on a daily basis? Like you said, the mundane responsibilities and obligations that do not go away. We all need to eat. My own experience, which I think I have shared with you before, is in the immediate aftermath of my father passing away, it was just my mother and I. I was 14 years old. I wasn't super helpful around the house. And people would just bring us dinner. And it was lovely. And that was unbelievably helpful.

But the other thing I think that is important, and I think this comes back to the word "lasting," is: Listen, you went through a hyper-acute event with Will's cardiac arrest. What I see happen all the time with the families I take care of is kind of a flurry of initial support.

Kristin Flanary:
Yes. Same with when you have a baby. Same concept.

Dr. Mark Lewis:
And then it ebbs. One of my friends told me, "Mark, it has never been easier to set reminders." And so what I think is nice is if you can be that person who remembers, say, I don't know, weeks or even a month or so later, "Hey, this person is still dealing with this serious circumstance, even if sort of the initial impact is starting to diminish." You can see the same thing actually happen, I think, with grief and bereavement. Not to be morbid about it, but it obviously happens in my practice too. I see lots of people attend the funeral, and then if I happen to reach out a month later, almost always that family is feeling incredibly isolated and alone. I think there is also a lot of power in sustaining your support.

Kristin Flanary:
Yes. And I think sometimes people do not do this because they do not know what to do. Like it is easier to know what to do in the immediate aftermath, like bringing dinner. That is a very tangible thing. Later on, it is maybe not as obvious. But it is so funny because we try to make it so complicated, but I think all you need to do is just be there in some way or another. Send a text that says "Thinking of you." Remember the person on their birthday and send a text for that. And then, I don't know, just be there physically. If you have that kind of a relationship, just sit there in silence. Whatever. Just the fact that someone has thought of you, has put effort and has shown up, that is how you feel the support. It is not so much about the grand gesture that you have done.

Dr. Mark Lewis:
Exactly. Yeah, it is the little things that really, really count.

I know you told us that you are working on your book, and I am so glad that through your own writing you are finding out things that frankly sound almost therapeutic for you. You are a great communicator whether it is in the written word or the spoken word. And again, as eager as I am to read it, I am actually just really glad to hear what you said in this conversation, is that it was part of your process of self-exploration and I hope with that some healing and catharsis for you.

Kristin Flanary:
It is hard to find words sometimes to put to feelings, but it is, like you said, it is very therapeutic. Need the Germans to come up with a word for that. Why is language so therapeutic sometimes? I don’t know. But I have definitely experienced it many times over.

Dr. Mark Lewis:
You are very good in English while we wait on our German colleagues to come up with exactly the right word. Kristin, as always, I want to finish with the question we like to pose to everyone who joins us on this podcast. So what does "conquering cancer" mean to you in the context of co-survivorship?

Kristin Flanary:
Hmm. Is there a way to answer this that is not cliché? Probably not. But that is because they are true. It is just living. And I do not mean that in the sense of like survival. I mean just like, going on.

Dr. Mark Lewis:
Yes.

Kristin Flanary:
Just continuing to get up every day. You know? For us, for example, even though his cancers were relatively easy to treat, they do require a lifetime of treatment and very fluctuating levels of energy, mood, all sorts of things. So it is still very much something that we live with every single day even though he is cancer-free. And so yeah, just like continuing on and like not killing each other. Every day we say, "Hi, I am glad you are still here." You know? That is a victory.

Dr. Mark Lewis:
Yes. Well, here is my very nerdy oncologist take on it, okay? I think there are two incredibly stark endpoints in oncology. One is overall survival. And like you said, thank heavens, your husband survived both of his bouts with cancer, let alone the cardiac arrest. But the other one is quality of life. And as oncologists, we are, and I will admit this, we are terrible at measuring the latter. We love things that we can quantify. We love labs. We love scans. But things that are intangible and difficult to measure, I think we really struggle with. And I think as a field, and I will acknowledge this too, we have accepted a lot of surrogates that are really not capturing that longitudinal quality of life.

I heard a quote once from my mentor in fellowship. He said, "Mark, not everything that matters can be measured, and not everything that can be measured matters." And I think that is where we were getting at, is it is very discrete to measure someone's lifespan. It is much, much harder, I think, to see the impact that the cancer treatment, effective as it may have been, is having over the long run. And like you said, you are absolutely a part of that as his partner.

Kristin Flanary:
It is a chronic survival.

Dr. Mark Lewis:
Yes. Oh, well said. Well said.

The other thing you said today that I thought was beautiful is how this pivot that you never saw coming has become part of your identity and part of your cause. I think John Lennon said, "Life is what happens when we're making other plans." You wouldn't have planned on this, but you have definitely come into your own, and you speak for so many people, Kristin, and we are really, really grateful for your advocacy. And again, we wish nothing but good health and ongoing success for you and Will.

Kristin Flanary:
Well thank you, and thanks for having me back. This was so fun.

Dr. Mark Lewis:
Of course. And thanks again for speaking to our audience, because again, your message about co-survivorship and true patient-centered care is really invaluable, and we are just really grateful for your time and for your honesty.

And for those of you tuning in, thank you for listening to this episode.

This podcast is brought to you by Conquer Cancer, the ASCO Foundation. Conquer Cancer is dedicated to creating a world where cancer is prevented or cured, and every survivor is healthy. If you would like to support that mission, you can make a gift at conquer.org/podcast. That is c-o-n-q-u-e-r.org/podcast.

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