Caregiving Confessions: Emotional Rollercoasters, Miracles, and Moving Mountains

Ready for even MORE honest caregiver conversations?  Become a supporter of "Confessions of a Reluctant Caregiver" and unlock bonus episodes, behind-the-scenes peeks, and resources you won't find anywhere else! Plus, your support makes this podcast possible!  Sign up at https://www.buzzsprout.com/2101429/subscribe

**********************************************************************************************

Todd Keitz shares his journey as a caregiver for his parents. After noticing she looked worse each week on video calls, he organized doctor's appointments and flew to Florida to accompany his mother to visits. He advocated strongly for her medical care, successfully transferring her to a better facility. Todd took over his parents' healthcare decisions and was their main advocate during his mother's 17 hospitalizations over 22 months. He also helped his father make difficult decisions about cancer treatment when he was diagnosed a few months later.

Todd discusses the emotional toll of caregiving. He experienced PTSD from constant cancer testing and waiting for results. Todd shares how he regained some control in his life after caregiving by writing about his journey and starting a podcast. He hopes to help other caregivers by sharing resources and stories. Todd emphasizes the importance of maintaining a positive mindset while caregiving and finding one's voice when advocating for patients with medical professionals.

About Todd:

Todd Kietz is a passionate advocate for social good with a history of integrating community engagement and social impact into his life, starting from his teenage years volunteering in senior living centers. His commitment to social change has led him to create inter-generational programs, volunteer for Special Olympics, develop business curriculum for high schools, teach for Junior Achievement, mentor for Big Brothers Big Sisters, and consult in the healthcare industry. He also worked with the South Korean government on technology company consultancy in the 2000s.

In 2012, Todd co-founded Stock4Good, aiming to simplify stock donations to 501(c)3 organizations. In 2018, he moved to Florida to care for his parents, facing life-threatening diseases, an experience that inspired him to start My Care Friends, a platform supporting caregivers and patient advocates. Additionally, Todd contributes to the caregiving community as a member of the National Advisory Council of the American Association of Caregiving Youth and serves on the board of SayAh!, focusing on health literacy. He is also the Founder/CEO of 17 Commerce, bridging healthcare and technology through exceptional products.

Todd holds a degree from Temple University, where he studied Business and Economics.

Connect with Todd: 

Website: www.myc

Transcript

Natalie: 0:02

Hey guys, it's your favorite sisters with the Confessions of a reluctant caregiver podcast. On the show, you'll hear caregivers confessing the good, the bad, and the completely unexpected. You're guaranteed to relate the inspired leave with helpful tips and resources and of course, laugh. Now, let's get to today's confession. Ha,

JJ: 0:30

hey, Natalie,

Natalie: 0:31

you know, it's already been quite the morning this morning. But you know, what's the best thing to do on a Wednesday?

JJ: 0:38

Eat?

Natalie: 0:39

Oh, I do like to eat. Now, I'm thinking about what? We're not going to talk about eating this. Past on eating. You're very distracting. I'm sorry. I'm sorry. I shouldn't talk. We should have another guest confessor. And we have the past one today.

JJ: 0:55

You know, what I like about him is he showed up this morning with a sticky on his head that said, I confess that is how good this confession is going to lie

Natalie: 1:04

to him. I love him. He's my bestie Oh,

JJ: 1:06

you have so many besties.

Natalie: 1:08

I mean, I do. But I don't discriminate, but I love to have the more besties you can have the better. So you should tell everyone about Todd. Oh,

JJ: 1:18

that's fantastic. Thanks. It's my turn to talk, y'all. So today we have Todd Keats with us. And here's what he says. He says he has been a lifetime social good evangelist. Yes, yes. That's like an introduction

Natalie: 1:33

evangelists. Mental Health concierge. That's what I call myself. He's a social evangelist, this

JJ: 1:40

is my turn to talk, you're gonna have to shut it down. So that is a heading that I love. Like I would put that at the top of everything. So he has a lot of accolades and achievements. But this is what I'm going to tell you, I get to choose my favorite. And my favorite is that he volunteered as a hugger for Special Olympics. And since I'm a hugger, that is my favorite talk, so I'm going to throw that out there. But in 2018, he noticed during weekly video chat that his mom was looking worse each time. And he organized some doctor's appointments, and he flew to Florida from his home in California to accompany her to the visits. Now what happens in the next few years with both his mom and his dad, as his dad or other? I'm leaving to Todd to share because it is quite a ride. I think there's some miracles involved in there as well. Totally changed Todd's life. Like I think it changed your trajectory, Todd. So it is a journey. We are so glad to have you here with us today. Let's get started. I know Natalie, the answer is not you were born, and then you went to caregiving.

Natalie: 2:46

You can start somewhere, I guess.

Unknown: 2:50

Absolutely. I mean, thank you for the introduction. First off, and yeah, that journey. I mean, my gosh, it's certainly changed my life completely. And most of all, I'm sitting here with you. If that didn't happen, we would not be sitting here today. So is the culmination of everything is right at this moment.

Natalie: 3:10

So give us a little deets on your background with your like, grew up. You've got siblings, your parents. Give me Give me a little bit of deets on that.

Unknown: 3:21

Okay, yeah. Grew up. Born in Philadelphia. Okay. raised outside and the suburbs. brother, sisters, sisters, three and a half years younger sister brother is seven years younger.

Natalie: 3:36

The oldest?

Unknown: 3:37

Yes. That's me. Yes. That's the birth order is very important. We are very big into birth order. Yeah, they keep going. So on oldest Yeah. I mean, gosh, it was. It was a childhood. Yeah, it was fun. I mean, we had a lot of fun growing up in our house. Like every family, you have your challenges as well. And we had those to work in the caregiving aspect early on. At nine years old, I was helping with my uncle, who was living with us for a year he had or has Crohn's disease and way back had a colostomy. I mean, that's back before it's reversible or anything, so I was one helping out with that. And then went on to college played baseball. That was my big thing. And ended up doing the corporate thing until I had to talk like Kermit the Frog. Presentation 1000

Natalie: 4:36

Different story. Oh, you did Kermit the Frog voice for 1000 people. Okay, I'm gonna tell you after this episode, we're gonna have some extra content. I definitely want you to tell the story again. So you'll learn about Kermit the Frog at the end. Okay, keep going. Yeah, so

Unknown: 4:52

then, I had been doing a lot of work, consulting in the 90s with the pharmaceutical industry and, and medical devices. industry and married divorced in the 90s. And had nothing really holding me there, other than my family and Philadelphia area, but I loved California. So I decided, hey, I'm moving out there. And it was great hiking every day. And just, it was beautiful, of course. And the weather was a heck of a lot better in the winter than in Philadelphia. Preach. Yeah. And yeah, it was awesome. And then, in 2012, my dad calls me and says, I have an idea. Now, keep in mind, my dad would call me every week, every day, hey, I have an idea. It sounds like somebody

Natalie: 5:36

brought up Miley. I'm like, Jay, I have an idea. And then we started a podcast.

Unknown: 5:41

Right, exactly. So you said, Hey, I had this idea. And you want to be a part part of it. It'd be you, me and Michael, my brother. And it was to start a company called Well, we didn't know what it'd be called at that point in time and ended up being called stock for good, which was automate the stock donation process to nonprofit organizations. And I said, Yes, sure. So I moved back to Philadelphia in 2012, from California, and we started that I was CEO. And I started building out a team and raising capital and building out the software, patenting the software, and it was awesome. And then your earlier, offline, when you're telling us about what happened with work today for you, I had a gut punch as well, so to speak. And on the eve of our launch, in 2017, it was the week before Thanksgiving, our key partner pulled out. And that was professionally, the most challenging moment of my life was just, we were blindsided and had to sit back and basically think about what are we going to do? So I talked to advisors, I talked to the board, I talked to everybody in the team, of course. And I said, just give me a month. I needed I really this was this is the culmination at that point of five years of hard work ups and downs. And I just give me a month, I just need to kind of step away. And I did and I came back with a strategy and moved back out to California and started meeting using my connections. Yeah, with Facebook, Cisco, Google, all these companies. They love the idea. They didn't want to invest. But they made some great introduction. So I was moving forward with those introductions and having great meetings. And then my mom started getting sick. And so I came for that visit that you mentioned earlier, and I just decided wasn't even a decision. It was like, within the three weeks I was here, my mom's hemoglobin went from 12 to 512 to five. And so she's barely alive, we get her. I take her to a local hospital, they give her transfusions, they come in, and they say, Well, you know, she's got a lot of other things going on. Well, yeah, we know. And everything moves slow. And I said, this is this is a part of my advocacy. So I'm glad we're talking about this. And we're going to talk about a lot but I said to the I went to the nurse manager, I said, I'm taking my mom out of here. And she said you can't do that. And I said, I can't do that. And she said no, you can't. I said yes, I can. And I'm going to. And I said, Well, I can't give you permission to do that. You need to talk to an administrator, I said, first off patient rights, I don't need that permission, I can sign out and sign her out. And so that's what I did. And got her got an ambulance had are taken to Cleveland clinic here in western Florida, which is an amazing facility. And yeah, they saved her life at that moment. And that was the first of 17 hospitalizations and 22 months.

JJ: 8:52

So at that, at that point, Todd did you say hey, guess what? I'm gonna leave California. I need to be here all the time or work because that seems like there's time difference to Yeah.

Unknown: 9:04

There was time difference. Yes. You're funny. There was never a time to think. Yeah, there just wasn't a time because it was that hospitalization, which lasted three weeks, went right into rehab, which lasted another 10 days to two weeks, and then got home. And then within two weeks, he was back in the hospital. So there was you know, there was never a time to really think All right, what am I going to do at that point? That didn't that didn't happen for years.

Natalie: 9:40

So your parents had moved from Philly to Florida. They were snow they migrated down south. And so at that point, because I mean, what was what one? Did you have medical power of attorney and all the things like that because people We're gonna be looking and saying, oh, did you really just sign around?

Unknown: 10:05

At that point? No, they did not anticipate. They had a health data health surrogate document, and they had all that in place, but nothing in anticipation of this. So it was a matter of I just kind of took over. And I love my dad dearly, but my dad's healthcare acumen just, you know, wasn't going to be even close to what I could bring to the table. And and I'm just a will say Take Charge person when it comes to this play the

JJ: 10:40

oldest is that what we're saying Todd did not get a sense of that. Yeah, yeah. So are your are your siblings? Are they still in Philadelphia? Is that because they're not in Florida? They've not moved to retirement yet, I guess?

Unknown: 10:52

No, they are. My brother is in the Philadelphia area slash New York City now with his significant other once his kids left the coop, so to speak. And my sister is in Scottsdale, Arizona.

JJ: 11:10

You're just like, Okay, well, he can he can. He's the one that gets to go. Did

Natalie: 11:14

your siblings kind of do this? Because that's what we do to JJ. Sometimes, Emily, and I will put our finger on her nose. For those of you who can't see, we'll just put a finger we're like, che, what do you want us to do?

JJ: 11:25

Hey, nominate me.

Unknown: 11:27

No, you know, I have a lot of background, as I mentioned in health care. And I had a lot of confidence in that. And I was always the organizer. And just as a leader, I it was just something I was I was comfortable with. And I knew how to read charts and so forth. And, and yeah, it was just one of those that, hey, let's let's get this done. I mean, there's nobody who was going to be able to do that. I mean, if you go back to, again, I love my dad. But in that moment where we're sitting at the Regional Hospital, we going in for her transfusion, this is before the hospitalization. And my dad and my mom are sitting there because you know, my dad is the surrogate at that point in time. And so they're sitting somewhere, and I'm talking to a doctor at Cleveland Clinic about getting her in there. Because fortunately, we had a contact my my mom's cousin worked for the NIH for many years. And so he had a contact at Cleveland Clinic. It wasn't necessary, but it certainly helped when we are when we eventually arrived there. But my dad and mom are sitting at the local community hospital. And the woman's saying, Well, this is just a type and scream, you'll be back on Thursday for the, you know, for the transfusion. And my dad's about to sign I said, Don't sign that. And I said to the woman I said, you know, with all due respect, she's not going to make it till Thursday. Her hemoglobin has gone from 12 to five and three weeks. What do we do? How do we get this done today? And she said, Oh, well, you'll have to go through the emergency room. I said, that's what we're doing dead. Let's go. And I took my mom and I wheeled her down to the emergency room. And so And there's, I could talk about many instances like that, in terms of advocacy.

Natalie: 13:18

And that's crazy. That's crazy to think that. And then was that the physician who shared that with you to say, oh, or was that just the scheduler and they're just following what the order sheet

Unknown: 13:31

says? Yeah, that was a number of people. You mean in the local hospital? Yeah. Yeah, that was a few people. It started with the nurse. It started with, then the nurse manager. And then eventually the administrator came in, but at that point, I was already making plans and getting her out of there.

Natalie: 13:50

And your dad was just following along. Yeah,

Unknown: 13:52

I mean, my dad, I mean, my dad, really, he he's an accountant, an accountant by trade. He didn't have the background in health care to know what Patient's Bill of Rights meant, and so forth and so on. And, you know, and my dad was great. He's like, Tanco for you. You do what you got to do. I mean, he was, he's been like that. I mean, he's an amazing guy to just to say he thought he trusted me implicitly with his wife. I mean, my mom so yeah, pretty credible.

JJ: 14:20

He just said something that really made me think and that is the doctor and a facility isn't always right. And you absolutely have a right to say nope, we are changing our mind. That is not correct. And we are moving on tight. I love that that we can just stand up for ourselves. So you are your best advocate or the advocate for your family member. So So you guys go to the Cleveland Clinic. Your mom is she is in the hospital in and out 17 times. Is that right? Over 22 months. Yes. But she there's at some point, you know, I want to know first of all, did you leave your job I'm in can't, we said California. But did you eventually your career path changed during that time? Did you? Did you leave that job? Yeah,

Unknown: 15:07

I mean, I, I put it to the side. I mean, I was I was responsible for that company for that business. And since we had had that gut punch where the partner pulled out, everybody sort of then just was tacitly furloughed in a way because we didn't know what we were doing. And then when my mom got sick the first time, they were great, everybody was incredibly patient, from the advisors to the investors to the team. And they kept waiting. And then eventually, you know, they realized, hey, they got to do what they got to do, and they gotta find where they're what path they're going on. That

JJ: 15:44

speaks a lot. I think about priorities that I have to I'm in this and I got to step up, and this becomes a real priority for me. So yeah, and you know,

Unknown: 15:54

honestly, I never really even thought about, okay, this is a priority wasn't a thought process, like, Yeah, this is just what it is. And I'm there. Yeah. So

Natalie: 16:06

you did you end up keeping your home in California for a while and then eventually selling it? Or were your? Or Did did you have this realization? Did it take you a minute to come to the fact that I'm probably going to be a Floridian?

Unknown: 16:20

Yeah, well, the beautiful part of this was I didn't own a home out there. So not have to worry about that. And as far as the part about becoming a Floridian, I didn't even think about that for years, because I was so in the eye. And I was thinking about it this morning. Before we got on, like we're going to talk about this and, and because I'm talking with you to who I love, I'm just thinking, this is gonna be a different kind of conversation than I've had in podcasts. And it's not that I don't enjoy everyone that I do. But I, you know, I just didn't really think about it for years, because I was just so in the midst of 24/7 caregiving advocacy. And it was something every time you turned around, and I was trying to think, you know, I know we talked about, what are some funny things that happen? I'm thinking, Gosh, funny in the midst of that, I'm trying to think of what are funny things. And there were funny things. There was everything in the whole gamut. But yeah, I didn't think about becoming an authority and for years.

JJ: 17:21

So your mom, we I say we but she improved over time. So yeah, that 22 month journey you got you survived, she survived. You guys made it through that. And what what was next? Because it

Natalie: 17:36

doesn't after that, because the assumption was that your mom was going to pass that she had a terminal illness. That was not so terminal. Yeah,

Unknown: 17:47

so interesting. Her disease, which is systemic scleroderma. I don't know if they ever say terminal with that, okay. It's something like a lot of diseases, which ultimately will take your life in one way, shape or form, right. It's not like a cancer diagnosis where it's spread. And it's terminal in, you know, six months, whatever it is. So, during those 22 months, there was never a sign of her getting better. It was always unbelievably managing. I mean, I have stories that I could spend hours talking about just the craziness of advocacy, or at least my level of advocacy, which driving down the Cleveland Clinic when a doctor wouldn't get on the phone. I drove down 45 miles to get to go knock on the door, and they said, Well, you can't talk to I'm not I'm gonna stand here. I'm gonna stay. Exactly right. And because this is not okay. And so there are many other stories that just one. So then the 20 The 17th hospitalization happened to be. This is getting back to answer your question, JJ. The 17th hospitalization, which happened have been two weeks after the COVID lockdown. Hmm, this is powerful. I have hard time talking about this, but we my mom can't breathe. She's, you know, just skin breech can't move. We can I'm like, oh my god, this is COVID We don't know. So I'm in there with a mask. My dad's in there were the masks. We didn't know at that point. We probably have already infected if she did she did but called 911. She was taken to the local a different local hospital this time than that first one. And we get a call. We weren't allowed in. I mean, you everything was locked down. You couldn't go in. You couldn't and so we get a call from the doctor about an hour or two later, saying your mom's unresponsive. Does she have a DNR and I call Only mode. So I, I said she does. And the doctor who was very kind, she said, could you please read that to me? I read it to her. And she said is it signed, said it is. And she said, Okay, she said, Thank you. With that in mind, we're not going to take any heroic efforts, we'll do our best with what we can to hopefully get her responsive. She said, I'll call you back in an hour. She called back in an hour. And she said, I think you should bring your dad and I will make sure you can get in here. Because I don't think she's gonna make it. And like, holy moly. So my dad is at that point, just a deer in headlights. I'm still you know, I'm keeping it together. Trust me. I wasn't here on the verge of tears, like at that point. And I just said that we've got to go. And we got into the car. I'll never forget that ride. Yeah, I mean, my dad was just, he was in shock. And he was but he just said some of the most beautiful things my dad ever said to me. Yeah, he just said, you know, if she goes today, just know that she knew that you kept her life. So yeah. And so we got there. It was like a 10 minute ride. And we got in, they put us in hazmat suits, because, you know, they didn't know what to do at that point. We were literally in those hazmat suits. When it's in and we go into the room, my dad's just sitting in a chair off to the side and I'm, I'm sitting there and holding her hand and just rubbing her leg. And talking to her. She No she doesn't. She's not responsive, but because of an experience I had with my sister in 1989, a near death experience for her. I kept talking to her. 20 minutes later, 25 minutes later, her eyes open. And the doctor, the nurse who was right outside the door, because he gave us some privacy, like shock. Got the doctor doctor came in and said, Okay, we'll have to have you go now. We're going to do whatever we need to do. And she survived. So the what next, JJ? I know, that was a long explanation. But it was perfect. The what next? She had to then go through rehab and getting back some strength. Three months later, my dad was diagnosed with high grade bladder cancer. And then the journey continue. Yeah. Wow.

JJ: 23:06

That for me is like, for me, because I that is like a miracle. Number one, like you say that you had to read the DNR I'm not sure how you make it through that. And I know that situation with COVID. I know that happened because they you know, they can't relate to it. And and that to me is it's an extraordinary event. But I think you know, you're going in and being able to talk to that that person I believe that you know, touch the sound of your voice. And I believe that that that changes everything. So you that I love that that's like hope to me, that is just like a light. Your dad. So you're three months later and you're thinking, okay,

Natalie: 23:45

I can breathe maybe in between the doctor's appointments with mom, your dad, you're like, Dad, what's going on? Yeah, when my dad gets diagnosed? No, how did it how did it get found? No, I mean, because at this point, because you know, if you really think about it is your dad. So let's let's just back for a teeny second. We know that caregivers nail it when it comes to taking care of our own health faculty. Right. And so I think about like, my, my GYN yelled at me because I had been outside of the timeframe for my mammogram. And I said, Well, I was busy. And Jason even said to me, why didn't you have your mammogram? Because I had an abnormal mammogram a couple of weeks ago, which turned out to be nothing, thank goodness. But it was, Well, why didn't you do that? And I'm like, I don't know because I was in New York doing your being your person and with your cancer treatments. And that's not a guilt thing. That's just like, I didn't even think about me. And so do you think some of that was your you guys were focused like So how was your health journey with you and your dad go into doctor's visits and things like that?

Unknown: 24:54

Yeah, no, that was fine. No, that was all fine. All religious appointment. It's not religious, you know what? Yeah, but no, we got

Natalie: 25:03

religiously went to our appointments.

Unknown: 25:06

No, my dad just came in one day and just said, I think something's wrong. There's, there's blood in my urine. And I was like, okay. So at that point, he was not going to any doctors at Cleveland Clinic. And I said, Dan, if you are okay with it, I'd like us to pursue whatever this may be at Cleveland Clinic. And he said, That's fine. Because he knew what at that point, with my mom over all those hospitalizations and doctors, he knew that that was the place to go, right? Yeah, so we went and all the testing and everything showed that he had a high grade, it had moved into the wall of the bladder, and he had to have surgery, he had to make a big decision. This is a great conversation. Because when you think about it, he had to make a big decision. Because the doctors came back after all the testing and everything and ask him, Okay, you have two choices, well, you have three choices, you could do nothing. And then you'll be gone within six months. Or you have choice number one, which statistically is proven to be the best by a significant margin, which is basically have your bladder removed, have your colon removed, etc, and have a bag for the rest of life. Okay, whatever. And the other one was, well, you can go the chemo radiation route, and it's 20. I think it was 20 to 30%, less of survival, etc, etc, for a period of time. He chose that one. And I never questioned him. It was his choice his life. And I can't say I would have chose any different because he was thinking, I don't want to live like that with a bag and have to do. It's changed his life. So yeah, I mean, there's much more to that. But happy to be talking about it.

JJ: 27:02

How old was your dad at that time? Just curious.

Unknown: 27:04

So my dad at that time was proxys. He just turned 84. The other day. His birthday is two days before mine. My mom's is this coming? Monday? I was right in the middle there first. Little. So

Natalie: 27:17

nice. Convenient for birthday cakes.

Unknown: 27:21

Right, exactly. That's where my love of birthday cake came from. There we go. Yeah, so this was approximately, I don't even know, times, three, four years ago. So he was at anyone. Yeah.

JJ: 27:38

So he knew he knew how he wanted to live his life. He was like, now I don't want to, I don't want to deal with that.

Unknown: 27:45

guy. He's, I have to say going through all of this. His ability to handle going through this treatment has been phenomenal. I mean, he just number one, he's been fortunate but I also believe it has to do with frame of mind and side effects were not that much to the chemo initial he lost hair. But none of them none of the nausea. None of the vom, you know nothing, none of the other things and the doctor like, How can this be the doctor loaded him up with all these meds, never. And then his and then it spread. And then he was given a year to live and on average, and then they went through chemo and radiation again, this time targeted radiation to where it had spread in the lead up to the lung, and, and and the chemo just to get whatever might be in there elsewhere and never any other than becoming weak. But never the any of the others. Side effects. And but he just he's is he was amazing. And handling it. We're always amazed. So Wow.

Natalie: 28:54

Jay, we need to take a break. Just for a quick sec for our second break. And gosh, this is good, Todd. Okay, we'll be right back. Hey, ladies, I need to interrupt for just a second to share about the sisterhood membership. It's basically a sale every day. And the best part, it's free. Here's the details. We're partnering with our friends at benefit hub and other care partners to save you money with over 200,000 participating companies across the US and abroad. You'll find discounts at your favorite local stores, huge savings on vacations, amazing deals on home auto and supplemental insurances and everything in between. Go to Confessions of a reluctant caregiver.com to sign up. And then definitely tell your friends about it. They can join to trust me, there's a discount for everyone. And don't forget, it's free. Okay, back to capacity.

JJ: 29:52

All right, Natalie, we're back. And Tom was just sharing some really information that I found actually wrote a deal, because I want to remember it He

Natalie: 30:00

knows how to write Tai Chi was just proving it right. Not just drawing something that

JJ: 30:04

about his dad's help, and about his journey through cancer was that it was about his frame of mind that that made a difference for your dad. It was all about frame of mind that helped him through that journey. So your dad gets to that he he's beating the odds here. I mean, he is in his 80s. But he's like, I'm beating this. And they've told them no, and you get to like this 18 month mark, what's happening? 18 month around that mark, like, what happens?

Unknown: 30:36

18 months from the time at first was diagnosed? Yeah, yeah. Yeah. Well, since it had spread, and then he went through that second round of chemo radiation, you know, we're anticipating, okay, where else did it spread at that point. And he goes in for the scans, they have to wait a month or two for everything to die down from the radiation. And the results come back that there's no detectable sign of cancer. And we're like, I'm reading because I read every report that comes in before that. That's yeah, I'm just like, I'm reading and I can read these, I can understand a lot of it. Not all of it, for sure. But I can get the gist. And, and I was like, I called the doctor and he was great. And he called back and said, Yeah, I just looked at this, it does not look, you know what, we're gonna do a repeat, just to make sure that this is correct. And so the waited a week or two, I don't even remember. And we went back. And that went in and got it same results. And at that point, here's this is a great topic. Number one, it was a miracle, because the doctor said, you realize this is a miracle. He said, I can count on. Well, I don't know if I can count on the hand of when this has happened. He said you had a high grade bladder cancer that metastasized and it's gone. He said, you realize this is a miracle. Like us? Yep. You're telling us. It's a miracle. So it's

Natalie: 32:09

100% Miracle.

Unknown: 32:11

But unbelievable. So what happened then, and this happened, this applies to maybe a lot of people listening, hopefully, to a lot of people listening who have gone down a road like this is, you're in shock. You are just like, Oh my God, you're preparing for the next what comes next, you know, death at some point you're preparing for Okay, what am I going to do? My dad at that point was talking about, okay, we're going to be going on a cruise, we're going to be traveling, we're going to be doing whatever, I don't care about COVID, whoever, we're going to be doing whatever, because I got a year to live. But then you're like, given this second lease on life. And it Yeah. But the interesting part is, and this is really important. Yes. First and foremost, it's about that person who has been given that lease on life. It's also about the caregiver advocate about their loved ones. It's about the whole family. It's about their world that all then you have to then adjust and readjust to Whoa, okay, I get goosebumps right now. I mean, it's like, whoa, okay, you got to just adjust with that past two years of life was Ben. And for me, it was really five because of my mom. Yeah. And that's another journey. Yeah,

JJ: 33:27

that's true that what like what happens like that is what I like we want to get in because well, first of all, your dad gets the all clear. I mean, are you like, Okay, well, what am I supposed to do now? Like, can I get some sleep? I mean, because you're 20 475 years, pretty much I mean, up, down, up down. I'm thinking of maybe there's there at least for so many people you talk to, there's been grief involved, even though it's a pre grief, you're trying to plan for this? What is going on with you? I'm still

Unknown: 33:59

in shock. It took me a while. And at that point, here's a this is a huge topic for all caregivers and advocates, let alone the patients because we're talking about caregiving, and there is what I would say PTSD. And every time there's a test that's done, and I had already been there with my mom's every time there's a test done with her and then then my dad. So every time there's a test or whatever, you're just waiting for what's going to happen. So you're, you're constantly lonely, even though you can relax is not the right word. You're still waiting for okay, what's this test? When I open that up on my chart? What's it going to say the result? Whether it's blood work from my Mom, where's her hemoglobin? Do we have to get her another shot of Aaron s to make sure she's got that blah, blah, blah. And then even more so with my dad. You know, those first two tests right in a row that showed clear, although we understood it could still microscopically be there. It's then what do you do next and it's immunotherapy which he's been doing now. For almost two years, so he's almost at the place where he's going to stop immunotherapy because insurance won't cover it after two years. And because also immunotherapy can cause other issues. So that third test three months later, after those first two, I'm still like, Okay, you're not you're not comfortable because you're, you know, okay, maybe those first two, you're thinking were missed, maybe they were wrong. And this third one, three months later, it's going to show up, and it was again, not, and then you're like, okay, so you're still waiting for that hammer to drop again. You're never totally away from that. Having gone through it.

Natalie: 35:39

You're Not You never do you never recover. You're always waiting for the shoe to drop.

Unknown: 35:45

Yeah, you do. You do. And you're just it's that PTSD just waiting for like, okay, whatever. But you start to gain backs assemblance of life. And you do because you have to, you have to find that way. And there are different ways. And my way was writing about my journey with the one day one week, which is somewhere above my head. And that was cathartic just to share. And then the podcast that I do, which I just like talking to people, and I like but I wanted other people to share their stories. Yeah, all my care friends. And so by doing all these, I started to gain some semblance of life back. Yeah. And it's been a crazy journey.

Natalie: 36:28

Do you think it's, it's clawing back some control in your life in a way, because caregiving is the least amount of control. And that was the hardest thing for me is a type A? I know that seems shocking to people that you're like, what now there's a type eight and expect. But do you think it's trying to claw back some get some control and try to say I don't want anybody else to have to do to go through this. Like, I hope this helps one person.

Unknown: 36:55

That's exactly why I embarked on everything above my head here. It was to help even if it helped one person or one piece of information and helps people. It may not help them immediately in that moment when they hear something. But as we all know, we hear something and then maybe a year two 510, whatever, like, wow, you draw upon that moment in time, whether it's a piece of information or an experience that we've had, you know, this is when it comes into play. And so yeah, you're right. That's exactly what this is all been about. Oh

Natalie: 37:28

my gosh, you know, Jay, okay, so we could talk to Todd forever, which I know we had, like, in other calls, everybody is like, what do you mean, you have? I'm like, yeah, we've been friends for a bit. But it's time for Sister questions. And I think sister questions best.

JJ: 37:49

Oh, my gosh, what will I ask? So I keep going back to what you said about the positive impact, or your dad regarding his frame of mind, and how that helped with his his whole process. Tell me about your frame of mind, and how that impacts you going forward. I mean, your life has totally changed. But tell me about your frame of mind and what keeps you sane and what keeps you positive and what keeps you you fighting for good. You know, your televangelists, your evangelist sort of lifestyle

Natalie: 38:23

good evangelists. That's right. Yeah. Yeah. Well,

Unknown: 38:26

I'm, I'm a positive person. So I always want to look at the positive my mom would prior to her getting sick, she'd always say, you always see the positive in a hard situation. I'm like, Well, why look at the negative, you know, it's just, if you look at the negative, it's only going to continue negative your all your energy, and we could get into that whole stuff. It's, it's the energy that you put out as the energy you get back. So if you're putting out negative energy, you're getting, you're attracting negativity, you're attracting energy like that. And if we put out the positive and you're looking the positive, there'll be negative energy out there, but you're gonna attract the positive and I don't and this is not in a woowoo fufu kind of way. I don't mean it that way.

Natalie: 39:08

You know what I mean? I do, but you did live in California. So

Unknown: 39:13

I did. And you know, and some of that was okay at times, because it kept me you know, positive, but it's just, let's look at the positive here, let's look at rather than if 99% of it is doom and gloom and grim. There's 1% That's positive. And if you focus on that 1% that can then mushroom and push out that negative and as far as you can, and so that is in part how I went about caregiving and advocacy. It's, there's a lot of crap that you deal with. So but let's look at okay, what needs to be done, what can be done? And I think that's really positive as a caregiver and advocate to have that frame of mind because you, you help you help the conversations with that you Hopefully are co creating with the health care providers in a positive direction. If they're negative, well, you gotta move them in the positive. Let's look at how we can better this situation. What can we do to make this a better situation? I know you're telling me she, he's got a year to live well, what can we do? What is everything we can do to have that go in another direction? Hmm.

Natalie: 40:22

I like that. Well, and that goes into team and where is your place in the treatment team. And it sounds to me like and I know a lot of caregivers can probably relate like, I tend to feel like I'm on the outside. And no different than your dad was just kind of told, like, you can come back in a couple of days. And your dad was like, okay, because think about, we're told to be respectful of certain positions. And the having the courage to say no. And because it took, I mean, it was the same for us. It took, we said no to what the local folks told us, and we turned our life upside down and moved into another state. But I can tell you that had we not Jason's outcome would be so different. My life would be so different right now. Like, and so I wonder about, you know, advice for finding your voice in a room filled with a lot of letters after their name?

Unknown: 41:26

Yeah. First off, before I go into that, I don't know if I've ever told you. My middle name is Jason. So,

Natalie: 41:34

okay, so that's where the TJ comes from. Okay, good to know. Yeah.

Unknown: 41:38

I had no problem finding my voice. I mean, either. In part, having worked in and out of healthcare for years, having worked with scientists that are brilliant in pharmaceutical industry, people, CEOs of major corporations, etc, etc, I've had no problem with my voice. It's the way you use your voice. That's the key. It's a band. So my role. So shortly after my mom got sick, I was officially made the health care surrogate. And which just gave me some easier access to be able to get information and talk with folks. You still have to advocate and push in different ways, but it's how you push it's not you know, push has a negative connotation. But there's a way to go about it. And and so you could call it nudge, you could call push, you could call whatever it is. But they're important conversation. Yeah, I never had a problem having those conversations with anybody.

Natalie: 42:40

Yeah, I think for me, it's definitely taking a deep breath. After I see something that makes me want to go off the edge. So you know, if you had a tip, you had a tip that you would give, what would you give to some caregivers? Yeah, and

Unknown: 42:57

appreciate that follow up question, because now I can better answer JJ since I didn't fully answer J. J's. Because she did ask what would I do? How do I handle that? First off, one of the things that's been really important for me since I was going through my divorce in the mid 90s, is meditation. And it's and that can be as simple as I just need to go step over there for 60 seconds. Close my eyes. Think of the beach on the island of kawaii that I love the sand away. I got to come back I'm there right now.

Natalie: 43:36

Gosh, is that sand?

JJ: 43:40

Is that the island breeze? Oh, I feel great.

Natalie: 43:42

Oh wait, why do I keep having people

JJ: 43:45

can't see is that the wind in my hair? Well, wait, no

Natalie: 43:49

certain exam like what? You know, I need a bottle of like Hawaiian Tropic, they should sponsor this podcast just so I get it because I used to get the Hawaiian Tropic that coconut smell and I would just sniff it. Yeah, that's what they should have.

Unknown: 44:05

Have that. That's like the band of delay I used to use when I was 22. And here in Florida visiting my grandparents they moved here when they were older, but that aren't stuff that I'd be like slathering on great.

Natalie: 44:19

No, and then you're sniffing yourself a little. This smells like the beach. Is that grit or sand? That shower? Oh my god. That's funny. Yeah. Okay, last question. And then we're out of time, and then we'll stick around. What is your favorite? Guilty pleasure? What is the one thing that you love to do just for you?

Unknown: 44:44

Well, I'm going to answer that in two things my guilty pleasure as you know. Oh,

Natalie: 44:50

is chocolate. He's definitely got chocolate held up friends if you're not watching on YouTube through but yeah, got it. No. Yeah, chocolate love. Thank you chocolate. Love, you can sponsor Todd too.

Unknown: 45:03

It was a very keen product placement. Like, let's Gosh, that's a really tough question. I love listening to music. So I'm a music person. I have my speakers here and but the thing that's been really helpful is that getting an A dry getting in a car and driving and turning on music and just opening the windows and the air fresh that is always since I first could drive at 16 has been really helpful for me. Same

Natalie: 45:38

guys, Todd, we love you. We're so excited that you came today. I mean, honestly, this is so wonderful. I'm gonna close this out, but stick around. We're gonna have some more content. And guys until we confess again, we'll see you next time. Thanks so much. Bye bye. Well, friends, that's a wrap on this week's confession. Again, thank you so much for listening. But before you go, please take a moment to leave us a review and tell your friends about the confessions podcast. Don't forget to visit our website to sign up for our newsletter. You'll also find a video recording of all of our episodes on the confessions website and our YouTube channel. Don't worry, all the details are included in the show notes below. We'll see you next Tuesday when we come together to confess again, till then take care of you.

Unknown: 46:32

Okay, let's talk disclaimers. You may be surprised to find out, but we are not medical professionals and are not providing any medical advice. If you have any medical questions, we recommend that you talk with a medical professional of your choice. As always, my sisters and I at Confessions of a reluctant caregiver have taken care in selecting speakers, but the opinions of our speakers are theirs alone. The views and opinions stated in this podcast are solely those of the contributors and not necessarily those of our distributors are hosting company. This podcast is copyrighted and no part can be reproduced without the express written consent of the sisterhood of care LLC. Thank you for listening to The Confessions of a reluctant caregiver podcast.