Samira (00:00.93)
Hi everyone, I'm Samira, the host of the podcast, The Patient From Hell. I have a very, very special guest with me today. Hey, Chris. Thank you for joining us. I think we're gonna be covering, I think two of my most treasured topics. And I say treasured because I think it's very underspoken about in the community. And I don't think a lot of people...

Chris Schuler (00:09.148)
Hey, Samira.

Samira (00:27.672)
have been able to really tell that story at the level of depth that I believe that you could. So thank you for taking the time and telling us your story. Chris, maybe we can start with where are you calling us in from? Where are you dialing in from?

Chris Schuler (00:36.85)
Thank you so much, I'm happy to be here.

Chris Schuler (00:44.222)
I'm calling from the tiny state of Rhode Island where I've lived with my wife and family here for a while now since at least 2008. Great little state.

Samira (00:55.736)
And tell us what you do for your day job.

Chris Schuler (00:59.1)
My day job, my career started in philanthropy, so I started in the nonprofit sector,

working in alumni relations and program management, fundraising, development, charitable giving, all things nonprofit work. And that morphed into work in private education, academic medicine, public education, and eventually my last full-time stint was in healthcare before I took on this Herculean effort in advocacy and awareness in the neurodegeneration space.

Samira (01:30.812)
You'll have to tell us, maybe let's start with neurodegeneration space. What does that mean? Just give us a little bit more color on what that means for you.

Chris Schuler (01:36.488)
Sure, sure.

Chris Schuler (01:42.462)
Sure. So, you know, I think that's a good segue into why I'm here and how this all started. Life was just perfect. Everything was going great.

I would say that if I had to look at my life, I made it. I have a beautiful family and kids and life was okay. It was going well. And my father was diagnosed out of the blue with terminal brain cancer, glioblastoma, in July of 2021. And I'll share that we found out, everyone's got a story of how a symptom comes up, whether it's a seizure or really fainting spells or a lot of

of different ways glioblastoma or brain cancers will reveal themselves. And my dad's revealed itself through a slight pause in a sentence. I was talking with him and a neighbor and I had a backpack blower on my back. I was doing yard work and I turned it on low and my dad walked over and he was introducing himself to a new neighbor who had just moved in.

I was standing there listening to their exchange and he had the slightest speech delay in a sentence. Didn't sound normal, didn't sound him. And I called him that night on my cell phone and I said, hey dad, feeling all right? You okay? And he said, yeah, yeah, I'm fine. We hung up. Not two seconds later, I picked up my cell phone again, I called him again, I said, hey, I know you just said you were feeling okay, dad, but are you feeling okay?

And he paused for a moment and he said, I'm confused. And that word gives me chills to even when it leaves my lips. I'm confused. And that was a start of a very long journey for us in this neurodegenerative space.

Samira (03:37.152)
I think I have the chills too.

Samira (03:42.08)
In that moment, did you know anything about the neuro... I can't even say the word... the neurodegenerative space?

Chris Schuler (03:49.308)
No, no, I I had no idea what could have been wrong with him. It could have been he was dehydrated. It could have been a lot of things. And the last thing that we possibly could have imagined was that it would be brain cancer. And not just any brain cancer, but glioblastoma, the absolute worst possible case for him, for us. It was scary.

Samira (04:16.792)
How did you, can you tell us what happens next? So you have this sort of second phone call. Your father says that. What is running through your head in that moment?

Chris Schuler (04:22.684)
Mm-hmm.

Chris Schuler (04:28.626)
You know, I think when you hear something from a loved one, someone who is everything, my dad was my best friend, to hear him say that I knew something was wrong, I knew this wasn't him, known in my entire life, I knew something didn't add up. And the first thing I thought was, you must be dehydrated. We've got to get you some fluids, dad. All you drink is coffee, so we got to do something.

And I went over to the house the next day and I just tried talking with him about what he was feeling. And early on in this disease, glioblastoma, that tumor was doing something in his brain. It was already beginning to wreak havoc. And we had to figure it out. We had to figure out that that was what it was. And what most people do, you call your doctor or you try to handle it first. We tried to handle it.

I got plenty of fluids into him for a couple days, but we called the doctor and tried to get him into his primary. And like most people in the world, you call your primary care doctor, they give you a date to come in, in a week or two. And those two weeks or so before we were able to get a CAT scan and then an MRI, in those two weeks, we saw incredible change in his personality and his ability.

Samira (05:51.458)
in two weeks.

Chris Schuler (05:53.424)
Just a couple of weeks he was having word finding issues. He could tell me the state that we live in. He could not tell me the state that he used to live in for 62 years of his life. And I would say, Dad, do you know where you're from? He'd say, yeah. That's it. But you can't get it out? Is that the problem? You can't form the word?

And he kind of looked puzzled a little bit and said, yeah... hmm, put his hands up.

Yeah, was, it's a strange thing when you see a loved one who is someone who raised you, taught you everything, taught you how to walk, talk. It's a strange thing to see them struggle.

Samira (06:47.714)
Can you compare contrast that with having kids?

Chris Schuler (06:53.126)
Yeah, yeah, you know, as a parent, my kids were three and five at the time of my dad's diagnosis. And when you become a parent, your life changes and all the parents listening can relate. Your life becomes about the life that you brought into the world. Your priorities, although they may have meaning and have value, they have to take a different priority in your life.

As a parent, that's what I certainly did, and that's how my wife and I entered parenting, was they're number one. They are our number one concern. We have to keep them happy, healthy, have them learn and be vibrant kids. And when I started experiencing this with my dad, where he was having word finding issues, and I have a three-year-old who we're teaching language to.

The dynamic was just incredible. Those two extremes were certainly a lot to process at the time.

Samira (08:03.562)
So what happens next? You go to the PCP.

Chris Schuler (08:06.974)
So we go to our primary care and we talk about all the things that we hope it could be. Could it be a stroke? Now I never in my life would think I would hope for something to be a stroke, right? But here I am hoping to God that maybe it was a stroke. Maybe it was something that we all know because inherently for those both in and outside of the medical space, we know certain facts or a certain...

Samira (08:16.152)
I'm dangerous.

Thank

Chris Schuler (08:35.358)
realities in life and we hope that the things that we have or the things that are affecting us are things that are treatable. Right? And so, boy, I was hoping this guy would say this is a stroke. We went through options and ideas and the word finding by that time was about two weeks after the first symptom is word finding issues that really

gotten a lot worse. And so our PCP said, let's get you in for a CAT scan. And in the meantime, you should see a neurologist because there's something going on here. There's something up. And I was actually sitting right here at this desk with my dad after he had his CAT scan. And I was filling out the form for him to see a neurologist. So I'm typing away. I was doing like an online fillable form. I'm trying to put in information,

so we can get into it see a neurologist. And my phone rings and it's his primary care doctor and he says, we have the results. We see something. There's a shadow. You don't need to see that neurologist. So what I'm sitting here doing, typing in to see that neurologist, he said, stop. You don't need to see a neurologist. You need to see a neurosurgeon. And you need to see a neurosurgeon immediately. Now,

I have not had many times in my life where a doctor has given me a direct order that we needed to do something immediately. My heart, it sunk. I could feel across my entire body this wave of chills and God only knows what it was. Anxiety, fear, sadness.

It was probably a lot wrapped up in a very short moment there. And my dad's sitting, he's just sitting right next to me. And he was kind of an anxious guy. Kindest gentleman that anyone would ever meet. Tall, 5'11", big guy. The most gentle man in the world, but a little anxious about things in life. Now he's on speakerphone, doctor's on speakerphone. Doctor just said, we need to see a neurosurgeon now.

Chris Schuler (10:59.634)
My dad looks like nothing happened. Nothing fazed him because the tumor was affecting his comprehension. I knew immediately we're in trouble.

Samira (11:16.236)
At this point in time, Chris, I want to ask you maybe two questions and bear with me a little bit.

Samira (11:25.752)
Before the call comes from the PCP, you're hoping it's a stroke. And I don't know about Rhode Island, I don't know about your family, but at least in the US and public health, there's a lot of, for lack of a better word, education that's been done in the public health system to sort of at least teach the population a little bit about what a stroke can look and feel like. And in the two weeks that went by before you met the PCP,

what were you thinking? Like you were like, I'm hoping it's a stroke, it doesn't feel like a stroke.

Chris Schuler (12:02.216)
Well, actually, so I actually, the word stroke hadn't come into our mind until we saw the PCP. Before that, we were, all, it could have been anything.

Samira (12:08.397)
Mmm.

Chris Schuler (12:16.164)
Like I said, it could have been dehydration. It could have been signs of early onset dementia. We were thinking that there could be some issue with his thyroid. There are so many different implications that can affect our bodies in the way that our bodies work, neurodegeneration, certainly. There's so many different diseases, from Parkinson's to Alzheimer's. We were kind of thinking about everything, and with no one idea or answer.

Samira (12:25.056)
Yeah.

Chris Schuler (12:46.118)
I certainly, and as many people do, I was just Googling. I'm Googling word finding. 69 year old man, no other symptoms. No other symptoms. Felt fine, looked fine, had never had a surgical procedure beyond when he was a little kid, when his eyes were crossed and he had them uncrossed and he had his appendix out. That was about it. So the guy was generally healthy.

So as a family, we're trying to process and think of, what could this be? We're not doctors. Why can't you say the words you're trying to say? I had never even heard of the term aphasia, by the way, which would eventually be a big part of his illness. We had no idea.

Samira (13:36.216)
So you go to the PCP. The PCP is the one that introduces stroke and rules it out, it sounds like. And then you get...

Chris Schuler (13:42.278)
Mm-hmm, mm-hmm. Yep, ruled it out pretty quick. And in that moment, in that moment when he said, you know, could be stroke, you know, certainly could be some early onset dementia, I'm hoping it's any of those things. Because I am thinking in my head, whatever it is, it has to be something that we can work through. Something that we can, or something that we can fight. My mom is a two-time breast cancer survivor. And...

Okay, we've seen cancer before, we've experienced it, we've fought back. And thankfully, in that disease, there's a bit of a fighting chance for many, as you know.

Samira (14:23.17)
So at this point in time, has cancer crossed you or your family's mind?

Chris Schuler (14:27.74)
Not once. We had not even a slightest inkling that this could be brain cancer or glioblastoma, which when that word was uttered from the neurosurgeon's mouth, I needed to ask him how to spell it. Because I'm typing on my phone notes from this discussion. I had no... It's a gliowhat? What is this that we had no idea?

Samira (14:54.892)
The reason you see me sort of like dive into this a little bit is, and this is one of the things I was alluding to when I was introducing you. I think the, I think most of us, even in the cancer community, don't understand the width variety, the, I'm at a loss of words right now, the vastness of what oncology covers. And even as advocates in the space,

if you asked me today what the symptoms and signs are of glioblastoma, I definitely for sure would not be able to answer that question. And that's one of the reasons you see me sort of dive into it and want to sort of go a little bit deeper into the diagnostic process with you. So you get the call, the call, your father's not, you just see sort of like blank slate, sounds like neurosurgeon.

Chris Schuler (15:35.966)
Mm-hmm.

Chris Schuler (15:51.304)
Mm-hmm.

Samira (15:53.378)
So not neurologist, neurosurgeon. So at this point even, there's no cancer because it's not an oncologist, it's a neurosurgeon. So what's happening, you're gonna have this like moment and then what happens next?

Chris Schuler (16:01.8)
Mm-hmm. Mm-hmm.

Chris Schuler (16:09.39)
The second I heard neurosurgeon, my mind went to a knife. That was the image I saw in my brain because when I think surgeon, I think knife. I think cutting open. And so now I'm sitting here next to my dad and I'm thinking about what has to be cut open in his brain? What's in his brain that needs to go? I'm scared. I'm almost shocked.

And that stayed in my mind for a few seconds before I had to all of sudden mobilize to a different strategy, which was I need to see a neurosurgeon. That's our next step. And I need to see one now. So I'm not going to take any BS of scheduling, of working with assistants,

of going through the regular system that we all have to live with and go through. But I'm thinking, my mission now is to get him in front of a neurosurgeon now. If I could do it today, I'll do it today. And so I actually brought him home. said, all right, I thank the doctor. And he said, it might be nothing. I think doctors, I've met many great doctors. I've met some that are not so great.

Samira (17:26.207)
Hmm.

Chris Schuler (17:32.018)
But many doctors, I think, are great. And I think he was really trying to make me feel not only better, but at least that there's hope. We have to have hope. All people, as humans, without hope, there's not much. So I needed that to move on to the next step, which was we need to see a neurosurgeon. I remember, I actually don't remember what we did next. I brought him home. I don't know if I said anything to my mom

Samira (17:43.426)
Yep. Yep.

Chris Schuler (18:01.776)
about what was next. just brought him home and I got back here in front of my desk and I found the closest neurosurgeon. I, yeah, yeah, he recommended, he recommended you call our local hospital and talk to a neurosurgeon and get it. So they weren't, yeah, they weren't coordinating it. They didn't say, we'll handle your appointment for you. No, they're like, you gotta call a neurosurgeon.

Samira (18:10.634)
you found the neurosurgeon.

Samira (18:18.485)
well. my gosh.

Great. So you're Googling your surgeon. All right.

Chris Schuler (18:30.75)
So I'm Googling now, okay, this hospital name, neurosurgeon, a bunch of names pop up. I'm finding phone numbers. I'm on the phone immediately. I'm like, hey, I need to see a neurosurgeon immediately. My father has had a CAT scan. He's having symptoms of word finding issues, our primary care doctor says we need to see someone immediately. When can I get in there? Can I get in there today? Do you have anything today? I can be there in 15 minutes. Now I'm about 30 minutes from the hospital, but I plan on driving pretty fast.

So they get me in the next day.

I was pretty intent on, we need to see someone and it needs to be immediately.

Samira (19:13.083)
Okay, so it sounds like you picked a neurosurgeon who could get you in immediately and close to your wish. Okay, so you go to this appointment, you take your dad, it's only you and your dad. Your mom doesn't know.

Chris Schuler (19:20.124)
Right. Yep. Yep.

Chris Schuler (19:25.35)
It's me and my mom and my dad, we all go together. This is tail end of COVID. So, excuse me, we're all wearing masks. So that takes away half of the ability to read anybody or anything. We go into the office, the neurosurgeon, and now it's a small office. You we think about these visits. know, these two people, my mom and my dad, these are my people. Now I'm adopted.

And that relevancy could come in later into the story here because I'm only 5'3 and my dad's 5'11. So, but those two people have been my guide from day one, from as long as I can remember. We've been so many places together, Samira. We've been to, boy, we've been to birthday parties, to graduations, to vacations, to Christmases and holidays.

We have been everywhere together and now the three of us are here. We are in this tiny little room and we're waiting for someone with a white coat to come in and tell us what the hell's going on. We are desperate for information.

And the next 20 minutes change our life.

Chris Schuler (20:47.013)
Absolutely.

Samira (20:47.096)
So what happens?

Chris Schuler (20:50.462)
The neurosurgeon walks in and he's got copies of the CAT scan and he comes in with a neuro-oncologist and a radiation specialist. So now we have three doctors, white coats, masks. We're all sitting there just trying to figure out how do we get my dad's words back? Because that's our –

that's our only problem at the moment is he's having word finding issues. He's a little confused. What the hell's going on? Puts up the x-ray, right on the board there. And starts pointing to different parts of the brain. Now I have a brain, you have a brain. I don't ever look at my brain. Okay? I don't ever take a moment to think about how it looks, how it's wired. Not my thing. It's not my area of expertise.

Samira (21:21.016)
Yeah.

Chris Schuler (21:47.932)
So we don't normally look at those things. So here I am looking at my father's brain. And he's pointing to a shaded area. And he's saying this is a tumor, this very small, there's a tumor in here, there's a shade. We believe this is a form, a type of brain cancer called a glioma or a glioblastoma. Now when doctors talk to you, it's almost like talking to lawyers.

Very, very careful in their word selection, right? Very careful. And that's a good thing. For my lawyer friends out there, that's a good thing. We need people to be careful with selective. And doctors too. But we're layman's here. Just want to know what's going on. And he says this could be this glioma. As I said, I'm typing, what does that even mean? How do you even pronounce that? What does this mean? And they explain it's a tumor.

Now he says we have to have an MRI to confirm our suspicions of what this is. Okay. And then potentially do a biopsy. Which in retrospect, I don't think we should have done, but that's another story. So we do this biopsy, we are standing there, we're hearing all this information, we're trying to take all this in.

I can see the neuro, our neuro, the neuro radiation doctor who will be our radiation oncologist, radiation oncologist. She is, she looks sad. Through the mask, I can see that she looks, she looks like they just gave us the worst news of our life because Samira, we don't even know we just heard the worst news of our life because we have no, we have no context for this, this disease.

Samira (23:25.681)
my god.

Samira (23:41.625)
I'm holding back from so many opinions right now. Keep going Chris.

Chris Schuler (23:45.704)
She looks sad and she says, I'm so sorry.

Chris Schuler (23:54.174)
And we are, mean, my heart rates, I mean, I'm starting to tear up a little bit because I'm thinking, you're sorry? Why are you sorry? He's okay, he's okay. He's just having some word finding issues. My dad's gonna be okay. I could not, and Samira, we'll talk about this maybe during this podcast. I could not

imagine a world without my dad in it.

Chris Schuler (24:26.206)
I couldn't even, we don't think about those things as kids, as children, as adults. We don't think about morbidity. don't, I don't think death and loss are things that we, it depends the culture you're in, certainly. But generally, I speak in general terms as a culture, I don't think we embrace it or talk about it enough for it to be normal. So growing up Roman Catholic, you know, people die, you go to a wake, you go to a funeral.

Samira (24:49.164)
Yeah. Yeah, agreed.

Chris Schuler (24:55.794)
They're gone. That's it. We pray for them. They're with us always. That's how I was raised. But I never thought enough about it, truly. And so when this doctor is looking at me and she's saying, I'm sorry, I'm thinking, this is bad. This is bad. Now my mom is internalizing a lot of this during this

maybe 10 minutes. It wasn't a very long discussion. My dad, he's almost falling asleep. He's almost napping in the office. Now, my dad was a napper, so most people would know him, say, yeah, Don, he fell asleep at the movie? Yeah, no doubt, of course he did. Fell asleep at the campfire? Of course he did. So it's only right that he falls asleep in the office with these neuro folks who have went to school many, many years and spent lots of money

to become very successful and effective in their work. My dad's falling asleep. And that was a sign to me that, yeah, what's going on is as bad.

Samira (26:09.336)
But you still don't know it's cancer.

Chris Schuler (26:13.063)
This neurosurgeon said it could be a type of brain cancer, a form of cancer, a glioblastoma. So now we're thinking, okay, it is cancer. So my first question, when I was able to come up for air and when they stopped talking up here in how they talk, which is no fault of their own, I said, so we can cut this out, right? What's the next step? I'm thinking now, what do we have to do? Because now,

this whole thing has changed. This whole dynamic, this illness, this is not a thyroid thing, this is not dementia, which can't be cut out of your brain, right? So now I'm thinking, okay, well, maybe there's a chance here. Maybe if they can cut this out, we can move on, we can survive. And the doctor said, based on what he sees, there's a lot of tumor here.

So it may not be resectable.

Samira (27:14.998)
He says the word, resectable. And that makes sense to you.

Chris Schuler (27:16.679)
Mm-hmm.

No, it made absolutely no sense to me because I answered him and said, what do you mean non-resectable? What does that mean? Not resectable. What the hell does even resectable mean? I don't know these terms. I am a father of a three and a five year old. I've been raising money for a career in philanthropy. I'm a scout leader. I'm a coach in softball and baseball. I don't know these terms. OK, so he explains this that it may not be resectable. And so we start to process all this stuff. They provide a plan. He says that

Samira (27:24.561)
my god.

Samira (27:37.794)
Yeah.

Chris Schuler (27:49.514)
There's a standard of care, he says. Now Samira, although my mom is a two-time breast cancer survivor, the phrase standard of care was also completely foreign to me. Standard of care. What does that mean? What does that even mean? You know what's interesting about the word standard, not to go off on a tangent, but standard, when I hear the word standard, I think of something that's not very good.

Samira (28:15.48)
I'm with you.

Chris Schuler (28:16.669)
You know what mean?

Samira (28:18.424)
Sorry, I should not be laughing. It's true.

Chris Schuler (28:20.018)
Right, but just so fairly, standard. I mean, when you hear the word standard, what do you think of when you hear the word standard? I wanna know what you think of before I tell you what I think of.

Samira (28:26.072)
So, yeah, see, problem is you are talking to someone who self identifies as patient from hell. My whole approach to this was do not give me standard of care. It sounds like a bad thing. It sounds like a bad thing. And it sounds like a thing that is...

Chris Schuler (28:32.631)
Hahaha

Chris Schuler (28:38.696)
Mm-hmm. Mm-hmm.

It sounds like a bad thing. Yeah.

Samira (28:49.528)
Sorry, tangent on my end. The reason this podcast is called The Patient From Hell is actually exactly the point I think you're driving to. I think, I think this is where you're going with this. The Patient From Hell is a book written by a Stanford professor who was diagnosed with a very rare disease, many, many years ago. And he essentially writes this book as an argument to say that medicine and doctors and the whole industry is really designed around cohort-based medicine,

Chris Schuler (28:51.774)
Please.

Mm-hmm.

Samira (29:18.582)
meaning that you get put into buckets. It's like you come in, you patient, whatever patient you are, you then get placed in a similar enough cohort. Now, if you're in a similar enough cohort, all the research we've done so far is on this cohort, is on this group of people. And medicine is practiced by saying, hey, you belong to group A, I will do what I have done in group A, which is effectively, quote unquote, the standard,

the standard of care for group A. Now, the problem is if you have a deviation of any type that makes you sort of kind of maybe belong to group A, but not entirely belong to group A, well, now you're screwed because the medicine you're going to get is based on group A, regardless of whether or not you actually fit in group A. And that's what this book argues. he basically, this author argues that if you want to get the best care possible, you have to advocate for yourself.

And you have to understand, well, one, the language they're using. Two, you have to understand the areas where you can qualify for that group and areas where you can't. Because unfortunately, clinicians are trained to think in cohorts. It's not a bad thing. They should be trained to think in cohorts because of the vast majority of cases, that's what saves lives. Right? If this was a stroke we were talking about, them practicing standard of care is absolutely 100% the right thing to do.

Chris Schuler (30:46.598)
Absolutely.

Samira (30:48.578)
But now if you have a deviation, uh-oh, exact same protocol is now gonna backfire because you don't actually qualify for that cohort. Anyway, that was my side tangent, but yes, I have a lot of feelings on standard of care.

Chris Schuler (31:02.81)
So that word standard, and to your point, standard, we all interpret in a different way, right? And although standard might make sense in some instances, it may not make sense in many other instances. And certainly I don't strive and seek for standard experiences in my life. I don't wanna go on a standard vacation. My wife will agree there that we don't want a standard vacation, we want an exceptional

vacation. I don't go to a restaurant and ask the waiter or waitress or the server. I don't say, please give me the standard meal here. No, no, no. I want the exceptional meal. And so here we are here in this word standard. And immediately I'm thinking this sounds like it's bare minimum. It sounds like we got to do a standard. What is the standard of care? And the doctor begins to explain what a standard of care is to what you just said. It's the way we treat this disease.

Regardless of who you are, regardless that your name is Don, regardless that you're 5'11", regardless that you're from New York, regardless that you have ancestry that is German-Irish, regardless of any of that stuff, regardless of your... Now, he's not saying this, but regardless of your tumor type, regardless of the genomics of that tumor, regardless of how that tumor may or may not interact with the drugs that we...

plan on poisoning you with, regardless of all standard of care. Well, you're talking to somebody here who didn't know a damn thing and very quickly had to understand everything because he couldn't do it for himself.

And as Manta Cares is all about caregiving and providing resources, all of a sudden, Samira, I am a caregiver.

Chris Schuler (33:00.008)
From that very moment, I went from being a lot of things in my life, being a son, a nephew, a grandson, a friend, eventually an uncle, a husband, a father. Now I am a caregiver.

Chris Schuler (33:24.558)
Nothing, I say nothing, I want to say nothing prepared me for that. Everything prepared me for that.

Samira (33:31.288)
Tell me more.

Chris Schuler (33:34.738)
The way I was raised, everything I experienced in my life, every up, every down, every victory, every rejection, everything led to this moment where I am now my dad's caregiver with my mom. I call myself the primary caregiver because there was something she couldn't do for him,

and how do you become an advocate? How do you take on what seems insurmountable? And I say to any listeners, you can do it. You have what's in you to do it, to be the very best caregiver, because all you need is one prerequisite to be a caregiver. You need to be able to love. If you can love, you are a caregiver.

Samira (34:36.632)
Chris, if you're up for it, I would love to do part two. So I think this is a really nice juncture for, tell me if I'm wrong, but the start of caregiving. I'm making an assumption here, but just annoying you a bit. I suspect the next few weeks and months have their set of...

challenges that will be thrown your way and your mom's way. And if you're up for it, we'd love to have you come back and talk to us about it. So with that, are you up for going into what we call a rapid fire round? I'm going to ask you a series of questions, short answers. We often clip these out and give these out as independent little snippets. So just as context. All right, you ready for me? OK. All right.

Chris Schuler (35:08.09)
Absolutely. Absolutely.

Chris Schuler (35:14.674)
Let's do it.

Chris Schuler (35:29.181)
Ready.

Samira (35:31.264)
What is the best piece of advice you received from a fellow caregiver or a patient?

Chris Schuler (35:41.682)
Very quickly turn to resources. And the best piece of advice I got was through a mentor through the American Brain Tumor Association. And she asked me during my dad's illness, what are you doing to find joy during this journey? And I thought at first that that question was the dumbest question I had ever heard.

What joy? What do you mean joy? My father is dying. I am trying to keep him alive. He's having seizures. There's no joy here. And she asked me that question and it reframed how I should be thinking about this and what could I do to find joy. So my advice is something that at first when I heard it I thought it was awful and maybe the caregiver listening today may be able to relate to that but

find joy.

Samira (36:41.067)
Okay, what is the biggest tip that you have for someone who is newly diagnosed with glioblastoma?

Chris Schuler (36:54.706)
Depending on the severity at diagnosis, if you have the ability, now is the time to mobilize and to become an advocate. You simply can't sit down and take it all in and hope for the best and think that the people who you can trust in are the ones who are going to save you. The neurosurgeons, the neuro-oncologists, they are there to treat you and they're very talented

and they have trained and you can trust them. But you have to take it a step further and you need to become an advocate so that you can ask the questions that need to be asked at the right times for the best treatment for you.

Samira (37:42.454)
What can family and friends do to best support a caregiver caring for someone with cancer?

Chris Schuler (37:51.336)
You know, I think often we all want to support people. And by support I mean give them something. And maybe it's an answer. We want to have an answer for everything, right? We're just, people like that. Everybody is that inherently. Because I think we're all good inherently and we all want to help. When you're faced with a terminal disease, how do you help someone? And I...

I feel that the best thing that family and friends could do were not necessarily throw clinical trials at me. Were not exactly say, hey, have you tried this? Have you tried that? And sometimes that was helpful. But I would say the best was the people who embraced what we were going through and just simply listened,

with no answer per se. They just simply were there to provide and offer the love that they have done for a lifetime for us. That's the best way for me to think about those support network around caregivers.

Samira (39:04.204)
What has been the most useful resource you've turned to during the cancer experience?

Chris Schuler (39:12.264)
There's great nonprofit organizations. In fact, who knows if there maybe can there be too many? I don't know the answer to that. That's a loaded question. But there are some really great resources out there depending what your need is. If your need is emotional support, grief support. There are support groups tied to national nonprofit organizations and local ones if you need financial assistance.

There are so many resources out there, and at times it feels like you can drown in them because there are so many. My advice is pick two or three. Don't go crazy looking for every single answer out there. Pick two or three that look good. And if I can plug a couple, Samira, I will. The American Brain Tumor Association, the Brain Tumor Network are two that stand out immediately as ones that can at least help provide some initial support

when something like this happens and give you some tips on where to go next. And those next resources could also open more doors. So pick two or three, focus on the things that you need to be the best caregiver.

Samira (40:23.682)
What is one thing you did to recharge or reduce burnout for yourself?

Chris Schuler (40:32.634)
As a caregiver,

there may not be any one thing that I did because I probably did burn out. I have shared this with others in this space that my dad had occupational therapy, speech therapy, physical therapy, visiting nurses. We had a lot of people coming into our house and coming into our lives. One of those visiting nurses would take my dad's vitals. And on one visit, they took my vitals. I didn't ask for it, but they pointed at me and they said, you're next.

I took my vitals and I, my blood pressure was at stroke level. They said you need to go to the doctor immediately when they left the house. And I immediately called my primary care doctor who happens to be right out near my entrance of our neighborhood. And I said, hey, I got a lot going on and I need to get in there. And he was like, come on in right now. Right now, just come in. Don't go to the hospital. Just come see me. And we talked through things. So your question again was,

Samira (41:34.53)
what is the one thing you did to recharge yourself?

Chris Schuler (41:39.024)
In addition to trying to care of yourself and prevent burnout, which is very hard to do. So if there's a listener as a caregiver and you're like, I'm burning out and there's no chance for rest, I get it. We get it. My family were the things that brought me joy and were able to recharge my battery. Being with them is my meat, my everything in my life. And so they're my fuel. They were the fuel to keep me going.

Samira (42:10.392)
We're gonna wrap up and as a way to wrap up, so I read about your dad's story. I read a lot in the cancer space and Chris, I will say something that your dad's story brought me so many tears. And not tears out of sadness, but tears out of celebration of someone's life and of a life well lived. And what really got me was how you ended that article.

You wished people calm waters. Can you tell us where that comes from?

Chris Schuler (42:46.876)
You know, Samira, I don't know the first thing about sports teams in any place in this country. I get in a conversation with a group of people and I just nod my head because the reason for that is my dad was from the ocean. He was a surfer. He grew up on the great South Bay of Long Island. He spent countless time with his family on boats in the water. When he wasn't supposed to be in the water,

Samira (42:47.106)
Thank you.

Chris Schuler (43:16.156)
He was in the water. And the ocean, it soothed him. He became a saltwater enthusiast, a saltwater fish tank, an aquarium enthusiast over a lifetime. The water and every animal and every species, every crustacean, they move so slow. They move so intentionally. And he connected with that.

He loved it. He just loved everything about the ocean. And when he retired, he bought a home on a lake that he had hoped to do his entire life and he bought a boat and he spent time on the water any chance he could. I know that that calm demeanor that he had for a lifetime, the ocean influenced that.

Samira (44:16.504)
Thank you, Chris.

Chris Schuler (44:18.322)
Thank you so much, Samira. It's been a pleasure.