Resiliency and Caregiving with Janet Fanaki

Episode Transcript

Dr. Daniel Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Katie Peters:
And I am Dr. Katie Peters, and this is The Brain and Life Podcast. Hello, listeners and welcome to The Brain and Life Podcast. Dr. Correa and I really enjoy making this podcast for Brain and Life and we enjoy listening to your questions and answering your questions. So Daniel, I know you've been pretty busy traveling, working at the hospital, but do you ever get some downtime to listen to some great podcasts while we're making our own?

Dr. Daniel Correa:
Well, I live in New York so there can be a good amount of subway and other commuting time, and so I love podcasts for that reason. It gives me a place to disconnect for my email and enjoy other stories. So along the stories of Daniel being a food nerd, I really enjoy The Sporkful and also Dinner SOS. They're fun, creative stories around food. I'm just always hungry.
And they give me inspiration to use different ingredients or techniques when cooking at home or just hear about really interesting things around the world or other challenges people experience when they're cooking at home. And really, I mean, probably the beginning of me listening to podcasts and really getting into them and my wife and I have been longtime listeners and fans and our main go-to on a road trip is Death, Sex & Money with Anna Sale.

Dr. Katie Peters:
Oh, that sounds awesome. I do have some favorites. The Dream has been one of my favorites about money and multilevel marketing schemes. It definitely varies. But another one of my favorites I learned about from a colleague is called Resilient People, and the host is Janet Fanaki. She interviews regular people around the world in all types of different situations that are admired for the resilience.
And another reason why I know Janet is she is a three-time caregiver and widow who lost her dear husband Adam to glioblastoma. And this is a form of malignant brain cancer, and he passed, unfortunately, in February of 2020. I always find that it is so inspiring to listen to Janet and to talk with her. I always feel like I have a better day after I hear her podcast and after I get to chat with her.
And it seems to be appropriate today that we're recording this because it is Glioblastoma Awareness Day. So I hope you like this podcast and that you'll also check out Janet's podcast, Resilient People.

Dr. Daniel Correa:
That reminds me also of another podcast host that we've interviewed in the past as we talk about caregivers, Kitty Eisele. We interviewed her about her experience of caregiving for her father with dementia, and she shares her experience in story on her podcast Twenty-Four Seven. But particularly I also was taking a look at and there's really interesting questions that we've been getting from our listeners.
We thank you all once again for the questions that you send into us. And remind you, you can always record a question and send it in. The phone number is in the show notes. You can always just record or call in and leave us an audio message, which we'll be able to then play back for all of us. But here we have a question from Caitlin O. So she wrote to us saying, I recently read the article in the magazine about juggling caregiving for multiple generations.
I'm doing this and find it very mentally and physically taxing. I'm wondering if there are any known effects on the mind and body of the caregiver who is doing this type of work and if there are any suggestions to help make everyone, including me, feel more comfortable and happy. Yeah, I mean, this is a significant challenge. We don't necessarily want to look at the idea of caregiving and being a care partner for someone that we love as a burden, something that we've talked about before.
It's an honor to be there for someone that we care about, but that time with your family member can be taxing, as you mentioned, Caitlin. And there have been some studies that show that individuals as they are caregivers, if they're not able also to take care of themselves can have higher incidences of higher blood pressure and loss of control of other medical conditions.
So a big key thing is making sure that you're also taking care and taking time that you can for yourself. And so making sure you're looking onto the calendar that you have and you're working on your own medical appointments and take some time and find if there are any times in the day to do a little bit of what you can for yourself. And maybe that's even just planning five minutes.
Sometimes that seems like a more reasonable and accessible amount of time. And so some things that you care about and that help you and you get energy from for five minutes, even if it's five minutes once a week. And as you start to then develop that practice, you can then start to see if you can get it in each day and consider what are other things that help you takes a little bit of time for yourself.
And with your care partner and the people that you're helping support, just realizing that you can't always necessarily do everything perfectly, and so doing what you can with the time that you do have. And encourage any other fellow care partners to do the same and regularly check in with each of you.
Not only for planning and just increased communication about things, whether that's siblings or other care partners that are helping care for a family member or someone you love, but also to have some accountability that each of you are doing and taking some time to take care of yourselves. Katie, you work with many individuals who are going through this. What has been some of your experience?

Dr. Katie Peters:
It's totally true about Caitlin O's challenges that she's having. It is well-known in studies in the medical literature that caregivers can have subjective symptoms of having mental challenges, even physical challenges just because of that time that they have to do those caregiving duties. I'd say the first thing, and this is something that Janet, I listened to one of her talks and it was entitled Lessons in Resilience from a GBM Caregiver, so somebody that was taking care of somebody with a glioblastoma.
And one of the things she says is, you have to make your challenges aware to your healthcare team for the person you're caregiving for because sometimes they'll have resources. So don't be scared to reach out to those healthcare provider teams to say, "Hey, I'm having a harder time," because we can definitely give advice. We also have resources. There are also times where we can encourage respite care for some caregivers that are in certain situations.
So I would say definitely speak up and tell them that you're having those challenges because we want to direct you into places that you can get support and care. I recently just had this in clinic and one of the things I encouraged one of my caregivers to do was to make a list of things and then come up with at least three things that they had to put other things for themselves on their list. So definitely reach out and ask for help.

Dr. Daniel Correa:
Wow, that's a good idea. Editing down our list is always a challenge I think for everybody in many ways. And it makes me think of we, of course, in this way are definitely not experts. We have helped supported and worked along with families and learned from them, and many of our guests themselves are experts in this subject matter for themselves and have learned from other people in the community.
So I was thinking of some of our past episodes. One of those is an episode where I interviewed filmmaker Michelle Boyaner, and she does it. She made a documentary actually speaking to and interviewing caregivers in many different communities for many different family members with different types of dementia and neurodegenerative disorders. And so that episode on humor and heartache of caregiving is a great asset.
And then going and taking a look at her documentary is a great opportunity to have a perspective from many different people's experience. We also had an episode with Lauren Miller Rogen and talks about facing her parents' early onset Alzheimer's diagnosis and their own challenges with home caregiving. And then as I was mentioning just before, both journalist, producer, and podcaster Kitty Eisele talks about her experience as a caregiver.
One of my favorite episodes, looking back all the way to the early on in the podcast also was a pair of care partners, so two people with multiple sclerosis who take care of each other as loving partners. And that episode, Voices from the Multiple Sclerosis Community. All these and some of the resources also in the magazine could be helpful to help you just gain different perspectives and to hear different examples and experiences that may help you.

Dr. Katie Peters:
So we have another question from Jesse Kay. My dad has a brain tumor and is just totally resistant to wanting to do any research about how to help himself beyond the bare minimum of showing up to doctor's appointments. I guess I'm just asking to see if there are any more simple rituals or exercises I can encourage him to do even in his more stubborn state from home.

Dr. Daniel Correa:
Wow. I think we all have three of these family members and totally understand this. And one thing, at least from my experience, I would suggest for Jesse is consider that your father's stubbornness maybe in part from a sense of loss of power and independence throughout this whole process.
And so considering having a conversation and looking outside his medical condition and his treatments to other activities that he enjoys or things he cares about, helping him gain a greater sense of efficacy and doing these could help him grow in the capacity to consider how he can improve quality of life and managing his life with his brain tumor diagnosis and the approach of getting the care and everything that he needs.
That's just one consideration. Rather than just getting after the recommendations or sending more things related to the medical condition, maybe seeing if you could help him grow in these skills in other ways in parts of his life. But Katie, this is all your area, so you tell me.

Dr. Katie Peters:
Well, I really appreciate Jesse Kay's question. And the one thing is, and I think you hit the nail on the head, Daniel, is it's about quality of life. Everybody's definition of quality of life is different. This is part of our diversity. I like to think of the components are who are we, that's the being of quality of life, who we belong to, that's the belonging in our future, sort of the becoming.
Jesse Kay, it's great you want to help your father, but he also has his own goals of what are his quality of life. And so I think in this scenario, we have to balance what he can learn and do and change that can help both of you as part of that belonging. But we also have to sit in a space that we need to know what is his quality of life and what are his being and what are his goals.
Sometimes you need a little time with this, and this is where maybe a social worker or a patient navigator can be quite valuable for this situation because this is a time that families really need to come together. You want to be with each other and don't get discouraged. Keep on having those conversations because it's so important to be with your loved one.
And we've been really lucky to speak to several patients with brain tumors and also caregivers that have been affected by this. Definitely check out the myriad of podcasts we've done. We did one on a neuro oncologist who actually has his own experience with a brain tumor. We also had lawyer and model Victoria Veshi who uses her platform for brain tumor advocacy. And I recently spoke with Craig Russell.
He was diagnosed with a type of brain tumor called him meningioma. And in that discussion, he talks about how his wife and how his friends have helped him, but also about how to stay positive and what he's doing for his own self. And then BMX athlete Josh Perry, he also talked about living with brain tumors. So I'd say check out our past episodes. Maybe you'll get some tips there. And don't forget to check out maybe via the social worker or patient navigator.

Dr. Daniel Correa:
And if there's other topics that you don't feel like are answered by some of our past episodes or specific ones you want to learn more about, please let us know and we can work on new episodes that help you and many others. I hope all of you enjoy this next episode. Can't get enough of The Brain and Life Podcast? Keep the conversation going on social media when you follow @neurodrcorrea and @brainandlifemag, or visit brainandlife.org.

Dr. Katie Peters:
Hello, listeners, I'm so excited to have this guest on today. Sometimes you're supposed to meet someone. And our guest today, Janet Fanaki, is the person that I was supposed to meet. And Janet is the host of Resilient People Podcast and the lead content creator for Resilient People website. She interviews regular people around the world who are admired for their resilience. And how do I know Janet?
Well, she emailed me out of the blue, which I was so happy about, because her husband's brain tumor doctor, Dr. James Perry, recommended that she check out a symposium that I was doing on supportive care in neuro-oncology. And just to remind our listeners, I am a brain tumor doctor, which is also called a neuro-oncologist, and Janet is a three-time caregiver and widow.
She lost her dear husband Adam to glioblastoma, it's a form of malignant brain cancer, in February of 2020. And in her husband's honor, she started The Adam Fanaki Brain Fund, which financially supports charities that run programs and services to help patients with brain tumors and to also help their families and loved ones. And I'm just over the moon that she's joining us today on this podcast. Janet, welcome to our Brain and Life Podcast.

Janet Fanaki:
Katie, I'm a big fan of yours, and I'm a huge fan of the podcast. So this is just my pleasure to join you today.

Dr. Katie Peters:
The love right back at you. Right back at you. So can you tell us a little more about yourself and where you're joining us from?

Janet Fanaki:
Sure. So I live in Toronto, Canada. I am a mom. I have a dog. I'm lucky to be surrounded by fantastic friends and family. I love to sing. I listen to all kinds of music and podcasts, take long walks and focus on wellness. And as you mentioned, I'm a podcast producer and host, public speaker, advocate, fundraiser, and trying to start a book that I hope will get published one day.

Dr. Katie Peters:
That is awesome. That's a lot of hats to wear, and I cannot wait for the book. And can you share some more about your caregiver journey? So many of our listeners are caregivers to someone with a neurologic condition like a brain tumor or maybe a stroke. Can you tell us about your caregiver journey with your husband?

Janet Fanaki:
Yes. So Adam and I, I'll start the story by sharing that we had the same birthday. So Adam and I were both born on December 6th, 1968, and we discovered this on our first date. And so when we were 47 years old, we were getting ready to attend the US Open. It was the end of the summer and we were really, really excited to have the weekend away. Kids were going to be staying back in Toronto.
He had a friend who had invited us down to a box. And I had my outfits planned, and we were just really, really excited for this. But for a couple of months before then, Adam started showing some unusual symptoms. He started having difficulty hearing, and he also had difficulty retaining information, just remembering things. And he was a very, very successful busy lawyer, worked a lot and read a lot.
And I remember him saying to me towards the end of the summer that he was reading over some files. And I popped into the room where he was and he said, "I'm having a really hard time remembering what I'm looking at here. I'm reading things over and over again." And I just chalked it up to him being exhausted. And so he went to his primary physician and they had thought maybe it could be a mini stroke.
And so they put him on baby aspirin. And after a couple of days of that, he thought, no, there's something else going on. This is not what they're telling me it is. So he, thank God, pushed for some scans to be done. And so he went in and had a CT done, and the CT led to him needing an MRI done. And at that time, the kids and I were back to school shopping.
And so he called me at the mall and he said, "Look, I think I'm going to need an overnight bag. I think they're going to keep me here. So can you come down?" And I said, "Sure." So on the drive down, he got the results. And if I can just say that the results that he got, getting a glioblastoma diagnosis by himself in the hospital room, it couldn't have been a worse situation. So when he called me and he said, "It's bad," and I said, "Okay, well, I'm pulling over. Tell me."
And he said, "You want to know now or you want to know when you get here?" And I said, "No, tell me now," because I thought, in all fairness to him, he shouldn't be the only one that knows what's going on. And so when he told me and he was crying and he was so upset, and when I got down there, I was thinking on my way down, how am I going to help him? What does this mean for us? So it's like in an instant, your life changes, and it changes for the worst. And so when I got to him, we hugged.
And I said, "It's okay. You know what? We're going to build the best team around us that we can find. We're going to research everybody that is in the medical system. It doesn't matter where they are in the pecking order. We're going to ask them who they know in oncology, do they know somebody that specializes in this type of cancer, and we're just going to make sure that we have the most positive people around us."
And I just thought, that's probably the best thing that I can muster up given what we're dealing with. And so that's what we did. And so that's how the caregiver story started. It was just helping him to be strong, somehow trying to find strength myself. But yeah, just everything changed and life was never the same.

Dr. Katie Peters:
Well, what a incredible story, just what you were able to accomplish to help him and help yourself. I guess there's so many parts of that that resonate with me, and it reminds me so much of stories from my own patients and their loved ones, but is to find the strength for him and for yourself. It's not just about finding strength for the patient, it's about the caregiver. Can you talk about that a little bit more and how you were able to do that?

Janet Fanaki:
I think for me, I was raised to be very independent, so that was probably one of the biggest building blocks for me. And it was also making sure that whoever I was face to face with or on the phone with or what have you, that there was somebody who was there to be supportive, not somebody who was there to just say, "Oh, I don't know how you do this." I mean, that is not helpful.
There were a lot of examples that I could point to in the three and a half years that I was caring for Adam that I could say those were not helpful situations. But then there were many, many, many more situations where people were very supportive. It was how they showed up for us, how they showed up for the kids. And as you mentioned when you were introducing me, I'm a three-time caregiver.
So since losing Adam, I've been caring for my dad who passed away last year, and then my mom as well. But life teaches you that you just have to be agile. You have to be somewhat flexible. You have to somehow find that resilience to make it through these challenges.

Dr. Katie Peters:
I agree. And you mentioned resilience, and I love your podcast, Resilient People. Let's talk a little bit about that. I know that this experience helped inspire you to do this, but tell us a little bit more about your podcast and who you get to interview on that podcast and what you enjoy about it.

Janet Fanaki:
Well, for starters, the podcast was conceived by us spending a lot of time in the waiting room for his appointments. So the Odette Cancer Center at Sunnybrook in Toronto is a very big facility, and it services many, many people on a daily basis. So at any given time when you're there waiting on appointments, you're surrounded by a lot of people. And I'm a people watcher. And I have a background in public relations, so I'm naturally curious in what's going on around me.
And so I found myself looking around and marveling at what I was seeing because the first time that we stepped into our very first appointment, it was very, very scary. I mean, I thought that I was just going to be looking at grimness the entire time. And what you end up seeing when you're at a cancer center is kind of like normal life in many ways. People are gaming on their phones. They're joking with whoever they're sitting with. They're snacking. They're watching TV.
They're talking about what they're watching on TV. They're making new friends with people that they're sitting with. And I thought, wow, all these people, if they're caregivers, if they're patients, they're all here for the same reason, but they're all mostly dealing with it in a fairly positive way. And it got me thinking about just all kinds of challenges in life. And at any given time in your life, you're going to be dealing with something that's tough, but it's how you deal with it.
And so I started thinking about the people that I admire for their resilience in my own personal life. And I approached them and I said, "You know what?" I'm thinking because I've got this time, I took a backseat to working so that I could deal with Adam 100% and my children. And so I approached them and I said, "I really admire how you handled that thing that you went through. Can you maybe share that?"
And at the time, I was just blogging. I didn't know anything about podcasting. And they said, "Sure, yeah. I mean, no one's ever asked me how I deal with this." And I thought, well, I think it would be nice to share with other people, maybe inspire somebody who might be going through what you went through. And so that's how that started. And then I took to social media to say, "Oh, I'm doing this blog. Is anybody interested?"
You just throw it out there and just see what sticks to the wall. And people would write me back and say, "Yeah, my husband, I admire him for his resilience. He does," dah, dah, dah, dah. And it just got more and more people writing to me. And I thought, maybe I've got something here, like regular people who don't necessarily have the platform to share what they're going through.
They're not celebrities. They're not anyone who's in the public eye, but they're no less resilient than anyone else who has a TV show or radio program or their own podcast. So let's hear from them. So that's how that built. And then I learned how to do podcasting and producing and editing. And of course, when Adam passed away, you mentioned it was February 2020, so if anyone can remember, March 2020, what happened?

Dr. Katie Peters:
Oh, yeah.

Janet Fanaki:
Yeah, pandemic. So we had lots of time. So that offered a really great opportunity for me to learn how to do something new and it was podcasting. So then I thought, okay, I'm going to switch this from writing to having these people share in their own voice what their experience has been.
And so what started as something that was my curiosity and something that I thought, well, if I can help anybody and make myself a little bit busy focusing on something that's more positive than just dealing with cancer all the time, maybe that'll be a good thing for me too.
Honestly, so it's been a few years that I've been doing it, over 50 episodes. I'm going into season four. And every person that I've spoken with, I thought, this is amazing. I've made friendships out of it. We check in with each other. It's just been a really great experience.

Dr. Katie Peters:
You have your own community of resilient people, and that's what it's about. So you mentioned season four. I'm so excited for you. Can you tell us some about your favorite guests and conversations?

Janet Fanaki:
I mean, they're all treasured people. They open up to me, and they share things that sometimes they haven't shared with others. But I can give you a few examples of people that I've thought, wow, their stories are so compelling, or sometimes they're just plain old entertaining. Susan Mintz, who is a senior who lives in Florida, many people know her because I reference her a lot.
She was married to a man who was bisexual and died of AIDS, and she threw herself into advocacy and working with her local hospice. And to this day, it's been decades later, she still advocates for HIV and AIDS patients and for seniors sexual health. She is fantastic. Oh, and Dr. Caitlin Kirby, who defended her PhD thesis by wearing a skirt that was made of rejection letters from schools that she was applying to for her PhD.
And it was just normalizing the whole idea of failure in life and talking about it and saying, "It's okay to fail. It's okay to have disappointment." And I just thought, what a great way to send a message out to people. Matthew Poland, who was a young 18-year-old man when I spoke with him, he lived in Bury, England, and he had a fantastic social media platform and also did fundraising for brain tumor research.
He was living with glioblastoma, passed away at 18, and we got to know each other over the course of almost a year. Again, checking in with each other. And at 18 years old, you think, what does he know? But he knew a lot. He knew all about the importance of being open about your feelings with those that you love and telling them that you love them. And I thought, oh man, what a message.
He really touched my heart. And I would also say another example from England, two guys named The Tempest Two, they discovered on a lark that they were drunk one night and the next day they woke up and thought, oh geez, we promised that we would row the channel of the Atlantic Ocean. And they knew nothing about rowing. They had this boat that they...
I don't even know where they got this boat, but they got the boat. And it was just the whole idea of pushing someone along, getting out of your comfort zone. There were some really strong messages that came out of that conversation too. It's a variety of different people that I speak with. A lot of people will write me because of my brain tumor story, but I've done that a couple of times.
There have been so many other people that have approached me who are talking about all kinds of challenges that they've lived through. And yeah, it's a lot of fun.

Dr. Katie Peters:
Challenges doesn't have to be a medical illness. It can be a situation. It can be a rejection. It can be a failure. It could be having to get in that boat and row it and you've never rowed before. I really like that about your podcast because it is not just about regular people. It's about everyday regular experiences that show us that, you know what, we're doing okay.
We're sitting in that waiting room, playing that video game, and maybe making a friend. And we all are going to have some kind of challenge and all of our challenges are going to be different. And that's what diversity is. It's the whole rainbow. Now, you describe yourself as a resilience explorer. Tell me what that is.

Janet Fanaki:
So as I started doing interviews about the podcast and about the fundraising campaign, I started thinking, what am I doing? What am I telling people I am? I can't just come up with a whole description. So what is it? And then I thought, well, I don't know. I'm not really an expert in resilience. I mean, I feel like I've spoken to a lot of people and I'm definitely keen on researching the area, but just exploring it. And so I decided to call myself a resilience explorer.
And one of the producers that I was speaking with on a show, he said, "God, I love that title. That's awesome." And so it's just the whole idea of there are researchers out there, there are therapists out there, there are scholars and physicians, but I'm just someone who's lived through a really difficult challenge, a few challenges, and feel that I have a positive mindset because of my resilience. And I'm also keen to learn more the space. So that's where resilience explorer comes from.

Dr. Katie Peters:
I like it when you find your own names and you find your next challenge and next journey. It reminds me of a colleague I think I may have introduced you to is Brock Greene. He started Oligo Nation and he likes to call himself a care guider. So he is the father of two boys with oligodendroglioma, which is a type of brain tumor. And he says, "I've gone beyond being a caregiver and now I'm a care guider."
And I feel that you guys are both on the right path, whether it's guiding or exploring or charting a new direction. Now, many of our listeners, again, have a neurologic condition or their caregivers with somebody with a neurologic condition. What are some of your favorite lessons that you'd have for them?

Janet Fanaki:
Oh, wow. I would say, I'll give the example of when Adam had told me the news in the car. When I was driving down, the first call that I made was to my mom. And she had said to me, "What do I tell people?" And I said, "Well, you got to tell them the truth for starters, and you have to open up to your friends and your community." She comes from a generation of you keep things close to your chest when they're challenges within a family. And I respect that.
But at the same time, I said to her, "I'm going to be trying to build my own community. You got to build yours." And I kept saying that to anyone else that would ask me, "What do I do?" And it's that practicing the ring theory. And if anybody's familiar with what that is, you have the person who's the... In my case, I was the caregiver. They're at the center of the ring.
That person can push out their challenges and their problems out to the outer rings, but the people in the rings that are outside of that person cannot direct their problems back towards that person. So in my case, the caregiver. So it was important that I had my community set up. But then whoever was in the ring closest to me, my family, the ring outside of them, maybe my friends, following so on and so on, that all of those people directed their problems out, not inwards.
And so that would be one thing that I would say. The importance of opening up to others is a really big one. You're not going to gain a lot by trying to figure this out yourself. This is a thing that many people are struggling with, living with, and some of them are thriving with. And you don't learn that until you start talking about what you're going through. By sharing my story with somebody who I just happened to be in their space, she said to me, "Oh, you've got to meet my friends. She's going through the same thing as you."
And I thought to myself, I have a lot of friends. I don't need more friends. You don't really know me, so I don't need that. But then she pushed. She said, "No, no, no, I'm going to share your contact info with her and she's going to get in touch." And sure enough, years later, we're still really good friends because her husband passed away from GBM as mine did. We share all kinds of stuff. We've visited each other in each other's cities. We're planning a trip together.
So I mean, you never know who's going to end up being there for you until you open up. You got to find your supportive community, whether in our situation because we're talking about brain tumors and brain health, there's so many organizations that are online or in person. There's group therapy. There's one-on-one therapy that you can take part in through being a part of these organizations. I would also say don't deny yourself self-care as a caregiver. It's huge.
It's huge. It's not something that you're pampering yourself. You could be pampering yourself, but it's also feeding your soul and it's feeding your brain. It's feeling your overall wellness. So if it's just lying down for 10 minutes, 15 minutes, if it's just putting in your earbuds to listen to some music, if it's just going for a walk around the block. If it's asking someone to watch your person, whoever you're caring for, for a couple of hours so that you can go out with somebody else, you have to ask for the help.
And don't deny yourself those moments where you can have some joy because it's really, really important. I would also say to the parents out there who are caring for someone to make sure that you get the schools engaged with what your children are going through. It's huge.

Dr. Katie Peters:
I agree completely.

Janet Fanaki:
From the beginning, I had spoken to both my children's schools about what we were dealing with and to keep an eye on the kids for any kind of changes that they might see in their behaviors during the day because they are going to be seeing your kids for longer periods of time during the day than you might be. So it's really important to know that the kids are being watched and being taken care of.
And even their friends' parents to say to them, "Hey, if there's an opportunity to get the kids more engaged with each other, that'd be nice," because it's a lot for family to go through something like what we went through. So to know that there's that community around you is very comforting.

Dr. Katie Peters:
I think what's really important about that is something that you mentioned before is that you do need to be open and receptive to also having help and keeping your own self open. Because if you weren't able to tell a school or a work or your own school, because some of our patients that have brain tumors are actively in school, so they're going to college or maybe even they're pediatric patients, to be open and say, "I'm having these challenges and these difficulties," and have them know about it.
Because some people want to self-isolate a lot of times or just hide from the situation. There's nothing wrong with me, or there's nothing wrong with this situation. But I've found that when people open up, particularly my patients and their loved ones, they reap the rewards and they get that community.

Janet Fanaki:
1,000%. I mean, I can remember in the beginning, Adam had asked me to not share with anybody. I had already told my mom, but he wanted the opportunity to share it in his own way with his colleagues at work, with his firm. And I respected that. But at the same time, honestly, Katie, it was really, really hard to not be able to talk about what was happening in our house.
And then what I did was I wrote an email to everybody that I felt was in my circle of support just in life, my friends, my family, whoever, and just telling them what was going on. And it was so much of a relief in a lot of ways because I felt like, okay, now they can come.
Now they can do their thing, because I knew my people would be there for me, but it was just not being able to share with them was really, really hard. So yeah, the whole thing about sharing, it's very big. And like I said, when you're dealing with something neurological, it's very difficult to do it on your own.

Dr. Katie Peters:
I agree. I agree. It takes a village. It takes all of us. So I don't want to miss out on asking you about The Adam Fanaki Brain Fund and its mission because it's so important and I'm so excited. I clicked on the website and I'm like, wow, look what you guys are doing. So can you just tell us a little bit about that?

Janet Fanaki:
Sure. So it started when we were finishing off the obituary for Adam. He passed away on February 15th, 2020. And we had already sketched it out. Adam and I actually worked on it together, but there was that whole element at the end when people usually say, "If you want to donate to something." And so I got the kids over and I said, I don't know if we can really pinpoint one thing or where we would be designating the money to go towards. But here's an idea.
How about we do a pot that we say we're going to call it this, and then we're going to help work with the charities that had been there for us to facilitate some things that they're working on, but make it primarily for patients and caregivers, so helping them through this journey. And so we all thought that was a good idea. We're not fundraisers, so we didn't really know anything about this, but we know how to do basically like a "GoFundMe" kind of idea.
So we approached the Brain Tumor Foundation. We approached Sunnybrook's Odette Cancer Center, like Dr. Perry and Dr. Sahgal, and the Neurosurgery at St. Michael's Hospital under Dr. Sunit Das, and just to say, "This is what we're thinking about doing. If you have any ideas of where this money could go, but we really want it to be the soft programs that are helping patients and caregivers." So like the handbooks that are given now, the support groups.
We also ended up giving money towards a compassion fund, which helps people that are financially challenged. And for anybody who has been to a hospital once or who goes to a hospital regularly, they know how expensive parking fees can be. So we would cover that. We would cover transportation costs. We covered meal gift cards, sometimes medicine in some situations. So we did that because helping others really helps us, and we firmly believe that.
It's the whole idea that there's... And there's science to back that, that the more that you're giving of yourself, whether it's how we did it or just helping somebody on the street or whatever, it just makes you feel good. And so we had created this fund. We ran it for just over three and a half years. We just wrapped it up only a few months ago, only because the kids and I felt that it was time to move on from fundraising.
However, on a personal level, our family still supports donations to all those organizations because we feel really strongly about making sure that those programs are still going. And there have been opportunities that we've heard from patients through the organizations, their gratitude, the fact that they feel seen, it means a lot.

Dr. Katie Peters:
Oh, I'm sure it does. And I didn't want to miss out on telling that story. I would just recommend checking out that website so that you can see all those different organizations really that fund contributed to, because maybe somebody would want to check them out. Janet, you are a gem. I can't say enough about you. I have actually requested Janet's presence at multiple different things in regards to brain tumors and then also wellness.
And when you accepted this invitation to do this podcast, I was over the moon. So again, I want everyone to check out her podcast. It is wonderful. I learned so much from it, and it makes me feel truly more resilient. So Janet, thank you. You are just amazing. I'm so glad that our paths have crossed and are now stuck together, my friend.

Janet Fanaki:
Oh yeah, through thick and thin. Katie, you are a gem to me too, and there's going to be a lot more that we'll be working on together, I'm sure.

Dr. Katie Peters:
Absolutely. Thank you to our wonderful listeners.

Dr. Daniel Correa:
Thank you again for joining us today on The Brain and Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life Magazine for free at brainandlife.org. Don't forget about Brain and Life in Espanol.

Dr. Katie Peters:
Also, for each episode, you can find out how to connect with our team and our guests along with great resources in our show notes. We love it when we hear your ideas or questions. You can send these in an email to blpodcast@brainlife.org and leave us a message at 612-928-6206.

Dr. Daniel Correa:
You can also find that information in our show notes, and you can follow Katie and me and the Brain and Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @neurodrcorrea.

Dr. Katie Peters:
And Dr. Katie Peters joining you from Durham, North Carolina and online @katiepetersmdphd.

Dr. Daniel Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Katie Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

Dr. Daniel Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find The Brain and Life Podcast. See you next week.

Resiliency and Caregiving with Janet Fanaki

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