"I Wanted To Go To Some Place Where a Brain Tumor Ceases to Exist." A Conversation with Janine Urbaniak Reid

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Or to see chickens and other animals to donate, go to crittercampaign.org. Welcome to Hope for the Caregiver. I am Peter Rosenberger. This is the nation's number one show for you as a family caregiver. How are you doing? How are you holding up?

What's going on with you? This show is dedicated to those who are willingly, knowingly, voluntarily, without pay for those of you in McNuckin, putting themselves between a vulnerable loved one and even worse, disaster. Whether that loved one has Alzheimer's or autism or addiction or Parkinson's or cerebral palsy or a traumatic brain injury, whatever the issue, there's always a caregiver. And this show focuses on that individual. There are more than 65 million of us in this country alone and I believe the numbers are growing. And in the age of coronavirus, that's kind of changed the whole concept of caregiving, hasn't it?

We're even afraid to send our loved ones to places because we're afraid that may be the last time we ever see them. And so there are a lot of dynamics going on with the family caregiver and we dedicate this show to you as a family caregiver. If you want to be a part of the show, the number to call is 877... Oh, for heaven's sakes. Ed, what is that number?

877-655-6755. I'm serious. Look. I was going to say, I've got it memorized.

Well, then you should have said it. Jump in there. Help a man out.

I've been a caregiver for 34 years. Look what it did to me, man. I mean, I can't even think straight. That's John Butler, the Count of Mighty Disco. You know him. You love him.

You've gotten postcards from him. He's the guy that has been with me from the very beginning of this show, producing the show, a steady hand on the till when I'm asleep at the bottom of the boat. Well, thank you so much for that one.

I'm getting third watch, guys. That's all there is to it. Thank you for the intro, Peter. It is an incredible privilege to be involved with something that, like you said, there's 65 million caregivers out there.

And that's a really, it's a big number for a rather overlooked demographic. And that's one of the reasons I, yeah, yeah. I was going to say, you started, they, you know, we ended up getting paired together way back when. And they said, oh, it's a show for caregivers.

I'm like, well, that makes sense, but let's see how this goes. And low it went. And we became the first radio program to ever go syndication that you had produced. You had produced, I don't know, how many shows have you produced in your life or in your career? I produced over a hundred different, not, you know, not like, like, like individual shows, but like shows that went for, you know, several months or a couple of years or something like that, but several hundred radio programs.

And this was the first one that really went to syndication because there is such this, there is, there is this huge need. Well, and you said that all the others said they were going to, but none of them ever did. Yeah.

And this, well, it's a lot like, you know, you always have outliers. Who you calling a liar? Oh, hey, speaking of which, you know what, you know what you call a chicken looking at a bowl of lettuce? It's a chicken Caesar salad. John does a dad joke every week for whatever reason.

I have no idea. Well, I got a big database of jokes, you know? Yes, you do. But you've been with us. We developed this show and now we've become the number one broadcast show for family caregivers. And then our podcast, which today's episode is, is also the number one podcast for family caregivers in the world. And for that, I'm very grateful. We know there's an audience.

We know there's this just huge amount of people and we want to make things available. Given that we had on several months ago, a wonderful author speaker. She wrote a book called The Opposite of Certainty and Janine Urbanic Reed. And I was so fascinated by her discussion and I wanted to have her back on. So I reached back out to her people and to her and said, look, can you come back on and let us open this up a little bit more? And explore what she had to offer, because one of the passions I have for this show is to find people who bring such depth and wisdom and insight to the conversation and then collectively we all get stronger by having that in. And I just was I was fascinated by her and I was she had a line because we talked about her faith through this. And she had a line that I loved. It was my faith used to be like a triple A card I kept in my wallet to be used in emergencies. Until, you know, and I thought that was such a such a great line.

My faith used to be like a triple A card. And I just thought that was great. So Janine, welcome back to the show and thank you for taking the time to be a part of this today. Thank you, Peter. It's my pleasure. And it's just so important what you're doing.

I was contemplating that before I called in and I was thinking of how isolated I felt at times as a caregiver, even among my friends who were going going through their daily life. And this is so it's so valuable. You're providing this place where we can connect with other people who know, you know, other people who are.

We don't know. We can't see them, but we know they're nodding their heads as they're listening. Well, and I see the numbers of people that are downloading what we do here. And and then I know the audience on my broadcast show how big that is. And yes, you're right.

We'll never see the people. But I know that the need is great. And that brings me to your journey before we do before we get into your specific journey.

Would you just kind of set the table of who you are and what you do? And then we're going to get into kind of where this is going with you as a caregiver and as someone who's also been care gived for. That's the problem. How do I say that, Josh? Is that the past perfect care given? Yeah. The care given. Oh, the care given.

Oh, I like that one better. Yeah. Well, you know, I like to say that my life philosophy was very simple. I just wanted to try to do everything right. You know, and I'm the mother of three children who are now young adults.

They're in their early 20s now. And, you know, I grew up in alcoholism. And I say this because, you know, all of these experiences of my life set this table of who I would become and what faith would look like, which, of course, was my was that faith, was that strength, was that muscle that got me through absolutely everything in my life. And and so I grew up in alcoholism with two very lovely, very young and parents. And my dad drank and my mom took care of him. And we just tried to keep things as normal as possible. And there was this idea that if we could keep the outside, if we could keep the outside straight, you know, if we ironed our leotards in the 80s, I mean, we were very put together. You know, we had the nice garden in the neighborhood.

If we could keep the outside straight, the insides would come along. And, you know, what happened in our family is my dad eventually got sober and we learned about alcoholism. We all started getting better. And, you know, that's how I felt. So this is the setting the stage for how I became a mother. You know, I tried to do in my life to, you know, everything right. Check that box.

Check that box. And I you know, I had my first baby when I was 30. And again, I'm just going to I'm going to study up.

I am going to keep this child safe because, you know, while my parents were looking the other way when I was growing up, some really funky, abusive stuff happened with some other family members and I was just vowed nothing would no one would hurt my kids. So, you know, it went I was very stressed out. And as we get perfection is a cruel taskmaster, isn't it? I was going to say motherhood is a cruel task. Yeah.

Yeah. And that love, we feel it's so real and it's so genuine and we just want to keep these people safe. And and what I came to find out, you know, I had three children, you know, in a period of five years.

Again, very nicely spaced, doing it all very well and taking care. And, you know, really praying and trying to be of service in the world, trying to be a really good person. And what happened is my my young son, my son, Nathan, who's my middle child, his hand began to shake about kindergarten. And we started this journey, which you'll relate to.

You know, you start the journey of like what's going on and seeing various doctors and being told, you know, this is a normal tremor and he has migraine headaches, adjusted diet and being that, you know, the good good mom. I'm making air quotes, but I was a good mom. Right. We are a good mom. You know, anybody listening to this show is a good mom.

You're trying so hard. But being a good mom, you know, that was good news for me. OK, diet. I can do diet.

I can control the diet. And then what eventually happened is my son, Nathan, was diagnosed. He's 10 years old, about 10 years old when he was diagnosed with an inoperable, slow growing brain tumor. So what that meant was I say that our family entered the orbit of this brain tumor. And for me, you know, my spiritual journey, you know, I also I became I I skipped over the part where I, you know, developed alcoholism myself and got sober when I was 24. You know, I was six years sober when my kids were when my oldest son was born. And I had a faith, you know, and I had a faith that if I did everything right, you know, it was like the I guess a cash register kind of thing in a way.

You know, I don't want to minimize. I really I was so sincere in my faith, but there were limitations. And this experience with my son forced me to go deeper and to let go of a lot of platitudes.

Let me jump in two things. One of them is I started adding family members of alcoholics and addicts to this audience as caregivers, because I felt like wherever there's a chronic disease, there's a chronic there's a chronic impairment. And alcoholism is it's a chronic disease.

You have to work a recovery program. And wherever there is a chronic impairment, there's a caregiver. And so how do you feel about that as somebody who was in relationship with an alcoholic?

Yeah, somebody that also wrestled with that themselves. Do you do you how does how does that make you? I'm not going to hang up on you if you disagree with. No, I absolutely agree with you.

I absolutely agree with you. And it takes a lot of the shame out of this because it's one of the reasons that I think alcoholism is so hidden is it's this big secret. And it's for a caregiver of an alcoholic to come out and get help for somebody. And we don't say, oh, your your loved one is a bad person.

We go, oh, he's a sick person. Well, we can deal with a sick person, you know, and then, you know, I had to get help. That's how I ended up starting my sobriety journey is I got help as a child of an alcoholic, which was another test. I think there is like an on. Well, it was before there was online.

I'm sure it's online now. But there was like a list of characteristics of children of alcoholics. And if you've just listen to my introduction, you see you could fill it out for me. You know, perfectionism, this drive to control, you know, all of these things.

I found myself my life had been shaped by the disease of alcoholism. And, you know, some it's the good news and the bad news because some of these qualities aren't awful in moderation. Exactly. And that's you know, I absolutely agree with that, that, you know, we have these common qualities that are coping mechanisms. But then they can and they can be very, very useful in lots of situations.

But then in the business world, they become extremely valuable. I often tell this to people about caregivers. We are an employer's dream. We're highly, highly adaptable, flexible. We try to get so many things done.

We're constantly putting out the fires and stepping up and doing things. And and that that becomes a part of our DNA. And that's that.

Yeah, it's hard to to change the behavior that you're getting rewarded for. Well, exactly. Exactly. And but there's there's that little there's that moment like on the on the head of a pin, that moment where it tips. And that's that moment where, as I was listening to Peter, I thought about and I will stay late and I will never I will I will be up at two in the morning taking notes about how things should be.

And I will drive myself into the ground. And that's where the downside of that goes. And that's where the support is so important. Well, we're talking with Janine Urbanic Reid, and she's got a new book out called The Opposite of Certainty.

And we we were just John and I were just enthralled with her several months ago when she was on the show and wanted to have her back on to explore this a little bit further. I mean, we're getting into the meat of where caregivers live. We've got all these issues going on, whether it's a child with issues, whether it's a parent that's an alcoholic, all these kinds of things.

There's always a caregiver and that caregiver develops his or her own challenges to go along with it. We're going to talk about that more. Don't go away. Peter Rosenberger. This is hope for the caregiver.

We'll be right back. Have you ever struggled to trust God when lousy things happen to you? I'm Gracie Rosenberger. And in 1983, I experienced a horrific car accident leading to 80 surgeries and both legs amputated. I questioned why God allowed something so brutal to happen to me.

But over time, my questions changed and I discovered courage to trust God. That understanding, along with an appreciation for quality prosthetic limbs, led me to establish Standing with Hope. For more than a dozen years, we've been working with the government of Ghana and West Africa, equipping and training local workers to build and maintain quality prosthetic limbs for their own people. On a regular basis, we purchase and ship equipment and supplies.

And with the help of inmates in a Tennessee prison, we also recycle parts from donated limbs. All of this is to point others to Christ, the source of my hope and strength. Please visit standingwithhope.com to learn more and participate in lifting others up. That's standingwithhope.com. I'm Gracie and I am standing with hope. Welcome back to Hope for the Caregiver.

This is Peter Rosenberger. This is the nation's number one show for you as a family caregiver. That's my wife, Gracie. I want her new CD, Resilient, and she is indeed resilient. And boy, she can sing, too. If you want a copy of that, go out to hopeforthecaregiver.com and you'll see the album cover right there on the front.

Just click on it. And for any tax deductible contribution to what we're doing here, no matter what the amount, we'll send you a copy of that CD. How about that?

It's a pretty good deal. So go to hopeforthecaregiver.com. We're talking with Janine Urbanek Reid.

Her new book is called The Opposite of Certainty and she's sharing her journey. All right. So let me sum up. You grew up in an alcoholic family, a family member with an alcoholic who did get sober. And for that, that is that is great news. Along the way, though, it led you into some uncomfortable places where you had to walk through your own sobriety.

But you did that. Then you're going along and being a great mom and all these kind of things. And all of a sudden, you find out your son, your middle son, has a brain tumor. Things get a little bit weird from there on out, don't they? Yeah, that's a nice way to put it.

Yeah, they did get a little bit weird. Yeah, you know, I like to say it's like we didn't get pushed off the beaten path. It's like we went up a goat trail up the back of the mountain.

You know, we're not on the alternative path. And many of you can relate to that, right? Where it's like we're charting our own course day by day. So it happened. My son is now 23.

So I want to take everybody could inhale. He has been living with this. We've all been living with this tumor that acts up from time to time. And we originally, you know, we thought out a great medical team. And that was a lesson in and of itself because we had as many people can relate to, you know, some false starts there. And we eventually found a team that would work with us.

Right. That respected a team that respected me as a mother. The team that would we could discuss things which was so important because no one knows our children as we do, you know. But I don't know the medicine behind brain tumors. So that partnership was essential. And we still have the same partnership, the same doctors all these years later. And what happened is eventually three years in, we were living this uneasy peace with Mason's tumor, where he would go to school and try to get out of work by saying, well, I have a brain tumor. What's your problem?

And people, we'd have to tell people it's OK to laugh. He's just giving you a hard time. I coached his middle school teacher. Don't let him get away with that.

Hold that thought right there. How important was a sense of humor for your family through this? Oh Peter, you're just...

Absolutely. It was everything. And I, you know, this kid of mine, talk about a gift from God. He is hilarious. And he has this dry sense of humor.

And you know how many funny sitcoms we just watched and we joked, you know. I came across a line I meant to put in the book where I was driving Mason to school and I looked in the mirror and I said, oh shoot, I forgot to put makeup on. And he said, and all caregivers can relate to this too, right?

I forgot to brush my teeth. Particularly John, but that's a different story. Yeah, right. We'll get to that next. But anyway. That's a whole different show.

Yeah, a whole different show. But I said, oh, and Mason said, oh mom, you don't need makeup. You don't need makeup. A little floss maybe, but no makeup. A little floss?

A little floss maybe. Is Mason my mother? That's rough, man. That is rough. And that was his engagement. And he has a lot of self-awareness too. At this point, you know, he's 23 and he's able to say, you know, I use that as a coping mechanism. And I said, I know, I know.

It's okay. There are worse coping mechanisms, you know? Exactly.

There really are. We talk about on this show the importance of laughter an awful lot. And it can, well, I mentioned this to Peter like a year ago, and I don't know if you remember it or not, but laughter is like windshield wipers.

They don't stop the rain, but they let you get through it. I love that. I'm going to write that down. Another John Butler-ism. I say this often on the show because it's worth repeating. I remember when I first started looking at doing the show and people were kind of thinking, you know, what's this show about caregivers and all this kind of stuff?

And this is before I even went to John and worked with him on it. But Jeff Foxworthy told me, he said, Peter, make them laugh. You more than most know how painful this journey is. And they've got to laugh.

And one of my favorite quotes is by Barry Manilow is that, you know, I'm not here to cure cancer, but I can make you forget about it for about an hour and a half. And so when you get out there and you participate in music and laughter and life, you know, everybody's got sadness. Everybody's got heartache.

And we don't have to be miserable, though. I mean, Gracie's got a wicked sense of humor and she laughs like a drunk Viking. I mean, she does. I mean, you get her laughing. I mean, we have sit at lunch today with her parents and Gracie and she's just, you know, blah, you know, kind of thing. I mean, she's missing both legs. She's in pain all the time.

Eighty surgeries, all the things going on with her. And, you know, she does. So I'm glad to hear that Mason has got that kind of sense of humor about it. Yeah, I get the coping mechanism part of it. But you know what, we can laugh and learn to laugh and see funny things in it, or we can just be mean and bitter.

And that's no way to live. Exactly. Kudos to him. You tell him kudos. And you, too. You've got a great sense of humor, too. Thank you. Thank you. I appreciate that.

Thank you. Oh, and we've got a big dog here, too. I don't know if you can hear him.

No, let him bark. We don't care. Good. Well, yeah.

So, you know, in telling you my story, so what happened, there was a turning point where everything changed. Because up until Mason was 13, he was this normal kid who, by the way, had a tumor in his head. You know, and would have headaches. And there were these small bleeds in his tumor, so these, you know, emergency runs to the hospital. But nothing was ever, he managed somehow, you know. And then when Mason was 13, he had a massive cerebral hemorrhage in his tumor.

And he was in a coma and spent six months in the hospital. Which is a big part of our story because so much, this is my forced surrender. This is my, I thought I had a path for this child and I knew what the right path was.

God, don't you agree with me because why wouldn't you? This is a good path. We all agree this is a good path. He is safe. He gets a job. He's a nice contributing person to society. And, you know, my plans.

My plans. And what happened is Mason spent seventh, well, his first eighth grade in hospitals. You know, we went to Houston for rehab. Spent a lot of time at Texas Children's Hospital.

Big shout out there. Love Texas Children's. Now, you guys live in California though, right?

We live in Northern California. So that was a commitment. It was a commitment and it was also, you know, the family really stretching because my other two kids were in school.

So we had to leave, you know, I left them behind and could see them out on weekends basically from time to time. So it was very difficult. We're talking with Janine Urbanic-Reed and her book is called The Opposite of Certainty. And you could hear the challenges that she's dealt with. She and her family dealt with a mother's heart, but she wasn't dealing with just this challenge. We're going to get into that more after the break. We just got to take a quick break. Don't go away. This is hope for the caregiver. This is a show for you as a family caregiver about how you're feeling, how you're doing, the isolation you're fighting against. This is what we're going to speak to and continue to speak to. We'll be right back.

Hey, this is Peter Rosenberger. Have you ever helped somebody walk for the first time? I've had that privilege many times through our organization, Standing with Hope, when my wife, Gracie, gave up both of her legs following this horrible wreck that she had as a teenager. And she tried to save them for years and it just wouldn't work out. And finally, she relinquished them and thought, wow, this is it. I mean, I don't have any legs anymore.

What can God do with that? And then she had this vision for using prosthetic limbs as a means of sharing the gospel, to put legs on her fellow amputees. And that's what we've been doing now since 2005 with Standing with Hope. We work in the West African country of Ghana. And you can be a part of that through supplies, through supporting team members, through supporting the work that we're doing over there.

You could designate a limb. There's all kinds of ways that you could be a part of giving the gift that keeps on walking at standingwithhope.com. Would you take a moment to go out to standingwithhope.com and see how you can give?

They go walking and leaping and praising God. You could be a part of that at standingwithhope.com. Are you enjoying our podcast? I'm John Butler, and I've helped produce Peter's show, Hope for the Caregiver, since it began. I'd like to think that I'm responsible for the explosive growth this show has enjoyed. I'd like to think that, but, well, Peter pays me not to, so let's move along. All jokes aside, though, Peter and I do have a great time with the show.

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I love listening to her sing. He knows the plans he has for you. Welcome back to Hope for the Caregiver.

This is Peter Rosenberger. This is the show for you as a family caregiver. We're talking with Janine Urbanic-Reed, and her journey is going to sound real familiar to so many of you listening right now, a mother who's watching her child go through something that she can't take away, but there's more.

So Janine, just take us back to this. You're traveling back and forth to Texas. You're seeing your other children, you know, once a week, hopefully. They're in California.

You're in Texas, and your son has a brain tumor. What's next? What happens next? Well, you know, I guess what I'd say is I hit a bottom, you know, with my plans, my plans and designs, you know. I was holding out all this time for us just to nudge us over on that normal path, off the goat path, off the mountain, you know, which is so treacherous. Another way is, you know, I wanted the miracle to be that that tumor might magically disappear here, or just go on inactive, and that Mason could have the life that I saw his peers having, you know. And what I had to surrender to were a couple of things. One is that the miracles were all around me, right? So once I stopped looking at that faraway, like, this is not supposed to be happening, and I could be more present in those hospital rooms, right, and just be there, and notice the miracle of the doctor who answered his own phone. I mean, we all know what that means. That doesn't happen, right?

But it happened quite a few times for us, right? The doctor who answered his own phone, the nurse's aide who had just the perfect thing to say to me, the friend who had the perfect words to say to me. So there was a shift of kind of coming back into focus, and so this is my path right now. You know, I think I was waiting to live a life I recognized, like, okay, I will get my life back, and then we'll be okay, and in the meantime we'll get through this. And there was this moment in Houston where I don't know what shifted or at what moment, but there was this moment where it shifted where it was like, this is the life I've got.

I've got to start living it right now. So that meant seeing, you know, my friend Joan, a very close friend of mine, I would call her and she would ask me how I'd been cared for in any given day. And I tend to, I call that God, you know.

You can call it whatever you want. It's good, it's goodness in this world. And I couldn't deny the good in the story. I couldn't deny the good in any given day. And the other huge piece that happened in Houston was I really started taking care of myself. Let me ask you, during that time, and this is a personal question and feel free to just hang up on John, but did you feel a lot of caregivers go through an excessive weight gain period? Did that happen to you?

It happened to me. I tend to not be able to eat when I'm in, like, when it's really on, I can't eat. Yeah. This is something I've talked about with Peter a couple times because I do the same thing. If I'm under stress, I just neglect everything about it. Regardless of what, it's a weight issue. We have a weight issue. We either lose weight because we're not taking care of ourselves or we're gaining weight because we're not taking care of ourselves. Is that a fair statement?

I think that's a fair statement. And, you know, for me, food just physically tasted like dust in my mouth at times. It was the strangest experience I'd ever had. Yeah.

But I did. That is strange. Isn't that strange?

Yeah. There's probably some reason for that. Was it because you were in the hospital setting, in a clinical setting?

No. I think it was the stress. Somehow the stress on my body. It's the stress.

I don't know. It's a weird thing, but it just was, yeah, literally it was that thing where it's like you can't eat. Now, I did eat and I'm pretty good about that sort of thing, like keeping my blood sugar up and, you know, like as if I'm running a marathon or something. I'm pretty good about having protein bars in my purse.

So the overeating, well, sugar is always a thing for me. So, you know, that's another show. Really? Yeah. Yeah, yeah.

I have a problem with chocolate and the problem I have with chocolate is that I don't have all of the chocolate right now. It's making total sense to me. You know, I knew I had to make a change when I got so big I was leaving footprints in dry concrete. I mean, you know, that's what you know, you've got to make some changes here. So anyway, I digress on that, but I'm always curious. I have these hypotheses that I put out there because I've watched it.

I've tracked with so many caregivers and I'd just like to every now and then just check and see, okay, here's a caregiver who went through a very stressful situation. How, what part did food play in it? And we've already touched on control. You know, we've already touched on control and food can be a very triggering thing to someone.

Like we want to exert some control over our lives when we might feel that we have none and that can be a way that people do that. So it's something to keep an eye on. Absolutely. Absolutely. Yeah.

Yeah. How about your fight with sobriety during this time? You know, I, um, my, I have, again, this is personal and you don't have to answer it.

Totally. You know, I wrote about it. It's, it's, I feel like if I wrote about it, it's all, it's, I'm fair. I'm happy to talk about it because I think it's relevant, right?

We want comfort. And you know, I had gotten, when I got sober, I had gotten some good habits and one of them was to have a circle of a support group. And, you know, my friend Joan was a part of my big part of my support group and my mentor for many years in sobriety.

And I thank God that I had had those relationships and those strong, those strong bonds, because that is what carried me in sobriety. And I knew, you know, I knew that I couldn't do what I needed to do and drink, but it didn't even actually the urge or the desire to drink didn't come up. Um, it was more like, I just want off this planet.

I don't really want to die, but I want there to be some other way where like, I had this fantasy, like I could get my family, like we could all go somewhere, but I don't know where that is, where a brain tumor ceases to exist. But it was more like, I just want out, you know. Hmm.

Yeah. Did you, did you stay around the clock at the hospital or did you have a separate room kind of thing or how did that work? Well, we did for, my husband and I, you know, when we were in Northern California, Mason was at Stanford Children's for two months of that. And we did switch off and take night shifts. Um, and my parents were nearby and my, you know, this is also a miracle sobriety story.

My dad is one of my close people and my mom is too. They're not married to each other anymore, but, um, but you know, we all, we took shifts with Mason and when we went to Houston, it was a little tougher. And, um, we, I, there was a time, there was that moment actually, the one I was talking about in Houston where it was like, I've got to take care of myself. And it was, that was when I stopped spending the night in the hospital. I mean, we were, I think four months in and I had to just even just physically leave and lay flat in a bed. They have these things, so-called sleeping chairs, which is great for hospital-wise, but you know, it's noisy.

Yeah, I, yes it is. And well, let me, let me deviate just a hair and talk to that individual who is spending the night at the hospital and, and, and then let them know kind of what was that trigger for you to say, okay, it's okay for me to go and go somewhere else and sleep. I feel like I physically hit a wall, like the exhaustion I, and there was a little voice in my head, which may have been sanity saying, you're not, you can't keep this up.

You cannot do for Mason what needs to be done and keep at this pace. So I'm, you know, as this codependent person, another result of the alcoholism I grew up in, you know, I'm aware that I'll do, I'll do anything for my kids. I'll do anything for people I love. So when it came to, oh, taking care of myself in this way is for the greater good. That's when I was able to make the shift. Now I have to say, I did that and I was convinced that the nurse was judging me. I was convinced that she thought I was a horrible mother. Now she did not say that. Those were the words going around in my mind, you know, and, and that night, I mean, he was in this wonderful hospital.

He had very capable, capable nurses and our hotel was right across the street. And you know, I was, I was five minutes away. But still, you know, and sometimes we have to, the guilt is going to come up. But it doesn't have to stop us. And again, I had to start considering this more of a marathon.

And how could I sustain this pace for the long haul? And this long haul has turned out to be, you know, the better part of ten years now. But it's not, you know, we deal with different issues now than we did during hospitalization. All right.

Now let me switch to your health. Yes. Something kind of went wonky with you. Totally not fair, right? No, not fair. It's just wrong. And that was my comment to God. My prayer was enough. Okay, come on.

You know, you have to be kidding. But yeah, I was, let's see, I have to think about how old I am because I was diagnosed five years ago. And that's not required to share on the air here, by the way.

You notice I did not volunteer that. I'm old enough. Old enough. Yeah, five years ago, I was diagnosed with a low-grade, we're big on the low-grade cancers here in our family. Hopefully, I mean, that's a good thing. A low-grade breast cancer.

Yeah, if you got to pick one, I mean. Yeah, that's what my, one of my closest friends said, well, you know, it's a good cancer, you know. It's a good cancer. She didn't say it's a good cancer. She said it's a training wheels cancer. She was joking. She was trying to get me to laugh.

And I was like, yeah, it's a training wheels cancer. Did it work? Did it work? No. And later. Later. Later. Much later. I thought, oh, that's a good line. That's going in the book. But so I ended up, because of just, you know, again, and I want to, I don't want to say this like, oh, all women who have this cancer should have this treatment because I am the last person who's going to tell anybody how they should treat their cancers.

Because I, that sort of certainty was rung out of me very early in Mason's journey. So I don't know what anybody else should do. I ended up getting a double mastectomy because of a lot of good reasons for me. But I don't know what, I support women in doing what is right for them.

That is what I think they should do. And get all the, and feel good about it, you know, feel like they feel good about their doctors and whatnot. So I had a very, very, I had a minor cancer and a very major, very difficult surgery. And that was another surrender. And that was another, God, enough already, you know. But what happened to me, you know, I think that, around that point, I, what got rung out of me was the question, why?

Yeah, it's kind of a, you know, Gracie and I have talked about that a lot. It's kind of a foolish question in some respects. We all ask it, but there comes to be a point when you think, okay, what's he going to tell me that's going to make me smack my forehead and say, okay, I feel better now, now that I know why. It's not really the question our soul is crying out for.

Yeah. Yeah, aren't we just wanting to be cared for? Just to be loved?

Yeah, we do. We just want, we just don't want to be alone. We want to be loved. We want to know that assurance that we are loved. And that we're cared for.

And that's a good word. Did you, was Mason in the hospital when this happened, in Texas, or were you back home? No, we were back home for a while. Now, Mason had had that brain injury. It was classified as a traumatic brain injury, this massive bleed in his brain. And he was still rehabbing. So he was, he wasn't quite on, well, he's just had a different journey in life.

You know, one's, I've learned one's not more valuable than the other. He's just on a different path, as I keep saying. So he, he was at, he was in high school, actually, when that happened. And, which is also, talk about a miracle, he was in high school. And he actually went to the prom while I was rehabbing at home.

My husband drove him because he can't drive. Well, that is awesome. That's awesome, though.

That's good. Yeah. Yeah, it was, yeah.

What about your other kids during this, the other two? You know, it's been, it's, they're amazing people. And I like to say, I would have wanted them to learn empathy and compassion from a safer distance from actual tragedy and scariness, right? Well put, well put.

Yeah, and it, I wasn't in charge of that either. So they, you know, they sacrificed when, when I was away, they sacrificed me being here. Now we tried really, really hard with our extended family to fill, to fill in.

But, you know, there's nothing like mom and dad. So, but the good, on the good news, I like to focus on the good news of that is my, my son Austin and my daughter Sarah are amazing people. And they have this depth that comes from having walked through really hard times. So, you know, still today, you know, they show up, they help out their brother. Mason's been having a rough go lately and they are just really present with him, which is, talk about if I have my eyes on that miracle, I have no doubt that we're being cared for and there's so much good in this world.

Hmm. That's got to be deeply rewarding to you. I look at my sons and, and Gracie and I both have kind of like, you know, we, they, they, there's so many visits to the hospital, so many nights when they had to be shipped off to be with grandparents and things such as that. And they've literally carried their mother on their back at times and they're fine, strong young men who we are most grateful for. And I'm like you, I would have preferred, I wanted them to be empathetic, but I would have preferred them to do it from a much safer distance.

Yeah. And, um, and yet this is the journey and, and I, I, I like to hear what's going on with the other siblings involved, um, because they have their own journey too. They didn't ask for this any more than their, their wounded sibling did, you know, and so they have to adjust to this and it sounds like you and your family have had some very frank conversations around the kitchen table. I think that's essential. I think that, you know, what was one of the beautiful things I've, I've, um, praised our medical team at Stanford and our neuro oncologist was very, one of our first meetings with him. We, he talked about the importance of being honest and age appropriate. So we had good counsel from the start and I think that's just essential. So that there are no secrets. Now that was with Mason's stuff.

What about your stuff? Well, it was, well, Mason has the ears of an elephant, let me just say. Nobody was going to be keeping any secrets around here. But by that time, um, Sarah was in middle school, Austin was in high school, Mason was in high school and you know, Mason's response, I remember we, we brought everybody together when we got this information and I said, I'm going to have this surgery. This cancer is, the doctor does not think it's going to kill me.

It's very curable and this is what I'm going to go through. And, um, Mason said he would sit with me in the hospital, which brings tears to my eyes. So I'll be with you in the hospital, mom. And, um, and Austin and Sarah just hugged me and you know, they, again, they helped, they, they're really good. You know, I like to talk about faith being a muscle and that the demonstration of unlove is a muscle too, right? We're doing, we're doing and, and they do, they really do do they, they will help out, you know, bring food.

They're just, their presence was so wonderful. Now, have either of them gotten married? Not yet.

Nope. That'll be, that'll be an interesting moment when they, when they take all that you and your husband have invested in them into another relationship. And, um, that, that will be a very interesting and moving moment for you.

Yeah. I could, I could say that from personal experience, uh, when our oldest son, uh, got married and now he's, they're expecting their third child. Oh my goodness. And, and so it's hard, I know looking at me, it's, it's easy to believe I'm a grandfather looking at Gracie, it's hard to believe she's a grandmother. Uh, but the years have not been kind to me, but it's, uh, but no, it's, I watched Parker deal with that and I think I, I want you when that moment happens, I hope you'll remember this conversation and then come back on the show and talk about it. When you see how they engage with their significant other, when that, when that person comes into their life, uh, and they build that relationship and they bring all that your family, uh, has dealt with, and then they're bringing someone else into that world.

And it's, it's, it's, it's, it's hard to describe unless you've been there and, and you will be there very shortly, I would imagine. And you talked about, uh, like faith being a muscle or love being a muscle and, uh, you know, Peter's children really, the only way you build a muscle is you lift heavy things and they've lifted an awful lot of heavy things. And it sounds like Sarah and Austin have as well. Exactly. Exactly.

So that's going to be a real, they're going to be ripped going into marriage. And we hate that for them. We hate that for them, but at the same time, we don't hate what they've become because of it. Exactly. Well said.

And so we just have to trust God. Uh, I, I told somebody the other day, uh, about, you know, they, they were saying that I'm a pianist. They said, we love the way you play the piano and this and this. And I said, well, I love the way I play the piano now. I love the way I write and communicate.

I hate how I got here. And so, you know, and, and I, I, as I listened to you speak and, and the things that you've written and, and you were, you were a columnist and you're a commentator. I mean, you didn't just decide to write a book about this. You've been a writer for some time. And, and I would imagine your writing has really evolved through this process, hasn't it?

You know, it has. And, and one of the things that I realized is that part of it is because I just don't have the tolerance for like, what's not true. I don't have the tolerance for a lot of superficiality anymore. It's just one of those other things that were wrung, was wrung out of me.

So I, I tend to dive pretty deep and I like that about me too. You know, it is a good thing. It is so refreshing, isn't it? Just to say, you know, I, I just don't have the tolerance for this. This is not a part of my life. I've got to cut this away.

It is, it's superfluous to me. I remember someone was telling me about, you know, the end times. And don't you think that Jesus is coming here and this and this and look at all these signs. I said, how does that help me take care of my crippled wife today?

You know, Jesus is going to have to come back when Jesus comes back. In the meantime, I've got work to do. You know, I just don't have the, that is not my, not my mind to manage. And I think what happens with us along the way is that we start realizing, I was doing a thing the other day. Somebody asked me, said, what's the toughest thing you've ever faced as a caregiver? And here's my answer. And I want to hear your thoughts on this. My answer to them was after 34 years of this, knowing what is mine and what is not mine to carry.

That is the toughest thing that I face on a daily basis with me as a caregiver. And I've got a fairly extensive resume, but that to me is the nutshell for me because I'm constantly overreaching on what is not mine to carry. And how does that, how does that strike you? Oh my goodness. You should see me. If you saw me right now, my head is like a bobble head. I'm just nodding, nodding, nodding.

Yeah. And I even caught myself, I would say, well, we're having, when Mason was younger and he had chemo, we're having chemo, we're having, and I was, and I, it wasn't like a conscious thing. It was just, I didn't have that separation. If it was happening to his body, it was happening to me, you know? And it's understandable when your child's really young, but at some point there's, I, yeah, it's been very hard. It's been hard to make that transition to Mason as a young man and a young adult who has a lot of ideas about how his life should be, as he should. Right. And, and, and wants to hear about his care and whatnot. And for me to learn to stop talking is hard for me.

Well, do you find that you have to bite your tongue and learn to like the taste of blood often? Basically, that's it. That's it. Yeah. And in here, I'm like, you know, like it's, I'm not graceful with the deep cleansing breaths.

They're not like subtle. It's like, what's happening to that mother there? Hyperventilating in the corner. It's like, okay, it's okay. I'm doing this yoga thing. I don't know. I carry my brown bag with me.

It just breathes into a paper bag. Well, you know, I had a friend of mine tell me something that was, it cut, but it, you know, the truth will set you free, but it'll piss you off first. And, and it's, um, and I, I, we moved out to Southwest Montana and my, our sons live back in the Southeast and, and I, we saw our youngest son last month and then our oldest son will be here at the end of this month and we'll see them.

We, you know, COVID notwithstanding, we will see them on a fairly regular basis. But we moved out here for a lot of different reasons. But I was just kind of pining away and I really miss them. And a friend of mine told me, he said, I know you miss them, but you need them more right now than they need you.

And I thought, ouch, darn it, that hurts. But, but, but, but when you, when you've poured your soul into it, that's, that's a hard thing. And it feels like parts of it is being kind of ripped apart and you've got to develop a new relationship. And as you develop this new relationship with Mason, that's got to be hard for you.

Oh yeah, it's so hard. And it's, I think it's actually probably pretty normal too, right? And that's the other thing.

We can be so, we're on this different track, different track. And then there's things come up that are so normal that this, this young man needs to individuate from his mother. Go figure, right? Yeah. The big secret that we talk about on this show is that, you know, this is not, all the things that we talk about are not specific to caregivers, but the crucible of being a caregiver just amplifies everything. And the idea of, you know, being a parent and having to back off of your now grown children is a pretty common experience. But when you're dealing with it again in this, you know, just firebox of, of all of the things that we've had to deal with, it ends up feeling a lot worse. Absolutely. Oh yeah.

It ain't pleasant. Well, listen, we are, we are at the end of this show. Janine, first off, I want to, where can people go to find out more about you, your books and everything else? Okay, well, I did share on, on Facebook, Janine Urbanik Reid. And then the book is on all of the online retailers, Amazon, Barnes & Noble. The independent bookstores should have it too.

It's called The Opposite of Certainty. And you can find me at theoppositeofcertainty.com. Are you, are you doing an audio book of this? There is an audio book available right now. It's not my voice, which is, I couldn't listen to it because it was a little weird.

My words come out of someone else's voice, but she's lovely. Did you get Samuel L. Jackson to do it? That would be good. Right? Darn.

Rats. Yeah. So yeah, theoppositeofcertainty.com. And then you can find me on social media. I post updates about Mason and pictures of our goofy pets and all the fun stuff of life. Well, you have become a real treasure and friend to this show. And I want you to know you have an open invitation because I need to hear from, from your journey.

And I know our listeners do as well. And thank you for opening up your heart and sharing a little bit more. And I'm glad that you're, you're walking in a lot of healing with your own cancer issues that you've gone through and all the sobriety stuff that you had to deal with.

And our best to all three of your children, your whole family. I want to hear reports. I'd love to hear follow ups with it. Okay.

I would. It's a deal, Peter. I'd love to come back. I just enjoy this so much. Thank you. Alrighty. This is Hope for the Caregiver. This is Peter Roseburger. I hope you had a good time. We'll see you next week.