Life, Cancer, Etc.
Life, Cancer, Etc.
Supporting a Loved One with Terminal Cancer with Angela Bounds
Angela's a great friend and, technically, the boss of me. She's been a support person for numerous people and helped her mother-in-law as she battled cancer. Her experiences can be helpful for anyone who's a caring for a loved one with a terminal cancer diagnosis.
NOTE: I am not a medical professional. Everyone on the "Life, Cancer, Etc." podcast is sharing their own experiences, not giving medical advice.
Photo courtesy of Angela Bounds
All other content © 2022 Heidi Bragg and Life, Cancer, Etc. All rights reserved.
You can also find some episodes on our YouTube channel: https://www.youtube.com/c/LifeCancerEtc
I'm Heidi Bragg, and this is Life, Cancer, Etc. My goal with this podcast is to connect you with stories and resources that help you feel happier, more resilient, and less stressed, especially when you're going through hard times. Okay, so today my guest is Angela Bounds. Angela and I have known each other for over a decade now. We were coworkers, kind of. Well, we worked in different departments. Right. Same place. Same place, adjoining pods of people. And now she's my boss. But she knows I hate the word boss. Not because she doesn't boss me around, because that happens all the time. But because she's really collaborative. And I feel like that's a more... accurate description of our relationship and we're friends and we share a brain. So
SPEAKER_03:I hate the word boss too. So it's okay that you hate the word boss because you are also, you are equally as bossy as I am.
SPEAKER_00:Hi pot. I'm kettle, but yes, go on.
SPEAKER_03:And that is our relationship.
SPEAKER_00:Yeah, it kind of is. It is. And we both have joked about the fact that our kids are getting, especially because we're working from home, our kids are getting very unrealistic expectations about, um, particularly their first job, their relationship. How they should
SPEAKER_03:interact with people that report to them or people that they report to.
SPEAKER_00:Correct. Yeah. So it's going to be interesting. By the way, saying correct like that is something I've gotten from you. And now I do it at home. Thank you. You're welcome.
SPEAKER_03:Kevin can thank me later.
SPEAKER_00:Yeah, I know. Okay. So as much or as little as you want to say, give people a little bit of demographics about you and your life.
SPEAKER_03:My life. So I was born and raised in Roseburg, Oregon. So small town living almost my entire life. I did have a stint where I lived in Portland for a while. But I've really just been raised in rural Oregon. I've grown up in the same organization my entire life, my entire work life. I have... I have three children, a husband who sometimes acts like a fourth child. And we have very, very tight-knit family. So my parents are very active in our lives. We're very active in theirs. And you work with your dad, yes. And I work with my dad and my brother, technically. I'm very close to my siblings and up until the point that angelo's parents were no longer with us we were very close his mom actually moved up here when donovan was two so that was 20 years ago years ago yeah nine or not 1999 but yeah it would have been 99 or 2000
SPEAKER_00:yeah okay
SPEAKER_03:right around there so that's kind of me in a nutshell
SPEAKER_00:Okay, so for this one, we're talking about cancer. And then tell me the ways you've, the roles you've been in around people in your life having cancer.
SPEAKER_03:Right. So I think that my first introduction to cancer, well, I guess I always heard stories as a child. My grandfather had... owned land in a significant portion of Clark's branch, which is. Oh
SPEAKER_00:yeah. Down South County.
SPEAKER_03:Yeah. It's South County. So it's about 10 miles from here, I guess. And he owned a significant amount of property and his wife got cancer. And so he sold a lot of his property to try and treat her cancer. I mean, we're talking what in the forties. Yeah. Yeah, and so I've always... We've always talked about cancer in our family. My mom... has had multiple scares with both cervical and breast cancer, both caught early through early detection. So she taught me from a really young age. I've been, I've been getting yearly checks since I was 18 years old. And I, as you know, I started getting mammograms at 35 because of her history with breast cancer. And, And so just it's always kind of been in our family and it's always been something that's on my mind, in the forefront of my mind to attempt to prevent. And then my father-in-law passed away from lung cancer and it was very, very quick. He was undiagnosed, went into the hospital immediately. diagnosed and essentially passed away within a few days. It wasn't kind
SPEAKER_00:of like dad. I mean, not lung cancer, but the same story.
SPEAKER_03:Right. Right. So super, super quick. There was no, there wasn't really even time to really wrap your head around it. It was, Oh, he's in the hospital. Oh, he's that. Oh, the growth in his lungs is that big. Um, and then it was, you know, it just took him. Um, And then there was the whole journey with my mother-in-law, which is where I gained the predominance of my experience with the cancer journey. Well,
SPEAKER_00:you were a very significant, very significant caregiver for Debbie.
SPEAKER_03:Right. So I, just like you... I am a type A personality, which means that I have this need to, especially when I feel like things are out of my control, I have to control whatever I can.
SPEAKER_00:Well, you're also, the other piece of that is though, you're also a very caring person. Like you care deeply about the people you work with, your family, whatever. You're not like obnoxious type A. I don't think either of us are that, well, we can be obnoxious. We can, but I
SPEAKER_03:think we temper it pretty well.
SPEAKER_00:Right. And we do a lot of that stuff out of this desire to be a caretaker. Correct.
SPEAKER_03:Correct. And when I'm in that mode, I do get very, very maternal. Really?
SPEAKER_00:Shocking. Yes.
SPEAKER_03:I get very mama bear. I get very maternal. I want to take care of everything. I took her to all of her appointments. I not only went to the initial appointments for diagnosis. We can talk about the diagnosis in a minute. But I took her to everything. A lot of her chemo appointments, I would just sometimes, you know, especially as you're first going through chemo, at least our experience was, oh, it's not that bad. I can go like I can catch a ride or I can drive myself is what I would hear from her. And, you
SPEAKER_00:know, there were rounds that's, you know, or weeks or so. That's true. Right.
SPEAKER_03:That's true. And so she would either drive herself or she would get a ride from the dial-a-ride people because she liked it and she was fiercely independent. But I would just kind of show up at the cancer center just to sit with her, you know. So you,
SPEAKER_00:I'm fine. I'll be by myself. Oh, that's great. That's
SPEAKER_03:great. That's great. I'm not going to let you go sit with a bunch of sick people. I'm going to go with you. right? Like try and keep the spirits up because it's, it can be, it's really quiet in there. I think I was shocked at the number of people who were going through that without anybody that would come with them with, you know, I, I wasn't doing anything that I thought was out of the ordinary or
SPEAKER_00:you've got, you've got, people who are in marriages where one spouse works at a job where they can't leave. Right. And so the other person gets a ride and goes, I noticed it out at my chemo room. The, the people who had people with them were usually the older people, not the younger people.
SPEAKER_03:Right. Right. But I guess I always, I always just thought that, you know, people wouldn't be there alone necessarily. And that's not the case. Like I would, I would either be the only one in there and all of the seats are filled. Right there. It's so prevalent at this point that you've got 10 seats and all 10 of them.
SPEAKER_00:Oh yeah. It's like standing room only.
SPEAKER_03:Yeah. Yeah. And, and I would be the only one in there who was like a guest and, for someone to hold their hand. And, you know, there were times when she would doze off if she happened to get the Benadryl because they knew it was going to be a bad one, right? That's a thing. It's true. It's a thing. I was like, wait a minute, you give them Benadryl? And they're like, yeah, it makes it so that they're not as nauseous because they're just too tired and it helps with that. And I'm like, oh, that's good. Oh, interesting. Yeah. Well, Benadryl, yeah. What was it? Benadryl steroid cocktail, I think is what it was. But yeah, so I went through that with her from the beginning to the end. Diagnosis through hospice. And that journey was a long time. I mean, I think that all in all, it was probably six years long. Um, because a local oncologist missed it the first time. So her doctor caught the mass in, uh, her primary care, her primary care. Uh, so she was a lifetime smoker, had COPD. Um, and, uh, so she had chronic bronchitis on top of it. It kind of goes hand in hand. Um, And her primary, so she had x-rays taken because they always wanted to make sure that the bronchitis wasn't turning into pneumonia and that the difficulty breathing was just the COPD and not pneumonia sitting in. So she got a routine chest scan. And I'll never forget, her doctor called her in. She asked me to go with her. And we sat there and talked to him. And he had been like a research specialist. at either University of Wisconsin or Michigan, somewhere there. And he stepped us through the whole thing. This is what it looks like. This is how it's different from last year. You can see that the edges here, like he literally spent 45 minutes with us just explaining what he thought it was. And we went to a local oncologist and they said, no, that he was wrong without any further testing. And so at that point, you know, I'll never take someone's word for it again. But the first foray in, you're like, thank goodness. Because you don't know what you don't know. Yeah, you don't know what you don't know. And you're just kind of sitting there and you're like, whew, dodged that bullet. Right? Like, you're just super thankful. You'll take any, no, it's not cancer that somebody will give you. Yeah. Yeah. Yeah. And so we were... That's a really
SPEAKER_00:good... I'm going to stop you there for a second because that's a really good point. If it's your first time, particularly, or if your gut is telling you something, go back and get a second opinion.
SPEAKER_03:Yeah.
SPEAKER_00:Especially where diagnosis is concerned.
SPEAKER_03:Yeah. Because I can remember walking out of there and both of us were like... Thank goodness. I'm glad. Yeah, there's a mass, but he says that it's nothing to be worried about. And now, knowing what I know now, and knowing what I have learned,
SPEAKER_00:you know me.
SPEAKER_03:You know me. I will never again take the word of somebody who says, without a biopsy, that mass is nothing to worry about.
SPEAKER_00:You're right.
SPEAKER_03:There's no way. I would likely... I would freak out. Well,
SPEAKER_00:I had, even I had to, after all the things they'd done after open heart surgery and I healed and I was doing, I can't remember if it was, I think it was Before radiation, it was, it was before radiation. I had to go get a bronchoscopy. So they had to put me out, go down in my lungs, take a sample because I had a weird spot. And they just wanted to be sure before they started radiation, what they needed to be treating. Right. Right. Doesn't that seem logical?
SPEAKER_03:It does. Well, I think I've told you before that. So following that, she was actually diagnosed with cancer. How
SPEAKER_00:long was it? It was 18
SPEAKER_03:months. So it was almost two years. It was about 18 months. And it got to the point where they were like, oh, crap, and had to do a lobectomy. So she lost her upper lung on the left-hand side. But I, getting my mammograms every year, I received a letter at one point saying, that was very poorly worded and you and I both know words matter. We argue about them enough all the time. But I received a letter from the radiology clinic after my mammogram that said, we found an area that we believe to be benign and I lost it. And then I Cause
SPEAKER_00:you focused on, we found an area. Right. I'm like an area.
SPEAKER_03:You don't know. You don't know if that's benign or not. You think it is because you're thinking that the edges look like they're smooth and that they're not rigid. But how do you know you took one sample? Like you got to do more. You can't just tell me that there's an area you think is benign. Like, I don't care what you like, especially after having like gone through the lobectomy with her at that point. And I called them, well, I called my doctor's office that following Monday and they were like, Angela, there's nothing in here. And I said, this is what the letter says. And they're like, there's nothing. There is no, there's no mass. There's no area.
SPEAKER_00:So they're looking at the radiologist report going.
SPEAKER_03:No, it didn't say that in the radiologist report. It only said that in the letter they sent me. And so I talked to the radiology clinic and they said, no, the area is your entire breast region. And benign means there's no cancer
SPEAKER_00:there. Yeah, we know that. But when you say area.
SPEAKER_03:They have since reworded their letters. Yeah, I'll bet. Yeah, they don't sound like that anymore. But so she was misdiagnosed. My mother-in-law, Debbie, was misdiagnosed. Ended up having a lungectomy. Did
SPEAKER_00:they take the whole lung or they took the lobe? Okay. They took the lobe. They took
SPEAKER_03:a lobe. They took, so it's a lobectomy. They took the upper lobe. So, and they told us at the time, no chemo was necessary and that they'd gotten the whole thing. Fast forward a year and she has a mass on her aorta. So.
SPEAKER_00:And they may have gotten it all, but it may have seeded somewhere. I mean, it had already seeded in the.
SPEAKER_03:Yeah. Right. Well, and I don't know. I mean, now I don't know if it had sent out satellites at that point or if it was because it was so close to the lung.
SPEAKER_00:Yeah. What kind of cancer do you know? Was it a carcinoma or would you have any idea? Did they tell you? I'm just curious.
SPEAKER_03:Carcinoma is skin, isn't it?
SPEAKER_00:No. Like my colon cancer was a carcinoma. My urethelial cancer was a carcinoma. Well, and the thing is, sarcoma does something different. Sarcoma can seed without there being a path. It can just seed somewhere else. So it's not really a metastasis that's moved. It's just like, bing, pops up somewhere else.
SPEAKER_03:I want to say that it was a sarcoma, but I would have to look back through the paperwork. And I do wonder at times if I've blocked some of that out, because there was a point in time where I could have rattled all of that off.
SPEAKER_00:Oh, I know. Yeah. But your brain shuts down for a reason.
SPEAKER_03:So it metastasized to her heart and that's where we started going through chemo. They could not, it was too risky to do surgery on her. On
SPEAKER_00:her aorta?
SPEAKER_03:Yeah. On her aorta. And so they did chemo and radiation and I, You know, there are points that I'll never forget sitting in the doctor's office and him saying, well, here we go. You are going to get the nasty chemo. We're going to have to hit this hard because we can't operate. Yeah. So you're going to get the nasty stuff. It's the stuff that's been along around the longest, but it is nasty and it's going to make you sick.
UNKNOWN:Yeah.
SPEAKER_00:I remember asking, so am I going to lose my hair? They're like, oh
SPEAKER_03:yeah.
SPEAKER_00:Yeah. My oncologist who's very, or my sarcoma specialist, who's very even and low key. He's like, am I going to lose my hair? Oh yeah. Yes. Yes. You will lose your hair.
SPEAKER_03:You will lose your hair for sure. Yeah. It was really interesting going through that portion of the diagnosis because You know, they, I always thought that you got, you know, back in the day, they'd say, okay, well, the survival rate is this, and this is how long you can live. And so he wasn't talking about that at all. And like, when you see people get diagnosed on TV, you know, if J.R. Ewing got cancer, somebody would say, you have five months. months to live or you have six months to live. And it was really interesting to learn. Like I loved her oncologist and he told us, he said, you know, things are changing so much. Things are, the research that they're doing is just, it's changing the whole face of cancer at such a rapid pace. I can't tell you how long. I can tell you that if we don't do this, this is how long she would have. And if she does, the standard was like three years. I think that it elongates her life by three years. And we were like, okay, we'll do three to five. We can do that. But yeah, it was a super interesting process to go through. So she got sick. She ended up with a tube because she couldn't eat.
UNKNOWN:And
SPEAKER_03:And then she was really good. And
SPEAKER_00:how long was that? Because I remember once she was done,
SPEAKER_02:she
SPEAKER_00:was back living on her own, driving around. It
SPEAKER_03:was, I think it was two years. So, you know, we got two years and she was great. Fantastic.
SPEAKER_00:And Sebastian, all your kids got time with her, but Sebastian got to know her as an older kid.
SPEAKER_03:Right. So, yeah. You know, she'd had a lot of battles in her early years. And I could have never imagined that she would have been the grandma that she was. But her relationship with my kids was awesome. Like, she was single. My husband is her only child. And She moved up here so she could be a grandma. And that is what she did. She would pick them up from school. She taught Sebastian how to ride his bike. I
SPEAKER_00:didn't realize Debbie was the one who did that. That's awesome.
SPEAKER_03:Yeah. And that bike is actually still sitting in my garage because I have a hard time getting... rid of things. Like I get attached to inanimate objects. And so I'm like, well, she bought him the bike so that he could learn how to ride. And, um, it's a bigger Spider-Man bike. And I'm like, I need to get rid of it. Cause I have no more children, but I'm having a hard
SPEAKER_00:time. Yeah.
SPEAKER_03:Oh, yeah. He can't have that in my plan. There's no.
SPEAKER_00:Find some, find some kid. Yeah. That's a great idea. Yeah.
SPEAKER_03:But yeah, she was a great grandma. My kids loved her to death. She was always around. She'd been a single parent for so long. And my husband being the only, she spent every holiday with us. Easter, Valentine's Day, she would bring little stuff over for the kids every single holiday. It was super weird the first year she wasn't here to hand out candy. Like she would stay at the house, she would hand out candy and we would take the kids out. And we're like kind of sitting there going, okay, so how do we distribute the candy? Like, okay, I guess we could just, let's just leave a bowl out. Even if some kid cleans it out the first time, whatever. It's all right. So, yeah. But so it was probably two years that she was good after they found that cancer on her aorta. And then she fainted and we found out that she had a spot in her brain. And so, um, I'm pretty sure this is where my memory gets fuzzy. And I think that the, like thinking about it psychologically, I, um, that's where it got really hard. Um, Yeah. Brain cancer is, or cancer in your brain is totally different. You, my husband actually thought that she'd had a stroke. You know, her face drooped. She couldn't walk. And she fainted. And so he went over and took her to the emergency room and we thought that she'd had a stroke and it wasn't a stroke. It was a mass. So as you know, chemo does not cross the blood brain barrier. Yep. And so there's no telling if the satellite had already been sent or not. Yeah. What the deal was. So we were able to shrink that one fairly well. You know, she did the steroids, which she hated, but I learned a lot about all of that stuff, like dexamethasone. So dexamethasone is what they gave her. And that stuff was, I mean, well, first of all, it's like crack, like, you know, you get super hyper, but second of all, it, it's amazing. Like it went from, you know, even before the chemo, they gave her the dexamethasone and it stopped the swelling enough that she could function. Awesome. Within about a week, I think. So we got her treatment and they shrunk it and she was okay. I can't even remember how long that was. It was, it was, Six months. Six months is what I was thinking. Yeah. And then it was six months because she was having to go all the time. And I think that she... So I've said that she was fiercely independent. So we got to a point after a couple of years where it was like, no, I'm just going to go by myself. You don't worry about it. It'll be fine. And then they found... a small mass. What they said was small, what looked small.
SPEAKER_00:This is still
SPEAKER_03:in the two of them. Two of them. Yeah. After they
SPEAKER_00:shrunk the first,
SPEAKER_03:after they shrunk the first one, uh, she started to have memory problems and hearing problems. And so they found two more. And, um, we went to Portland and they zapped them. And it should have been okay. They were shrinking a little bit. They were doing the steroids. They were also doing another therapy with her that I can't remember the name of. And that all happened in March. It was spring break. But things were never 100% right after that second occurrence in the brain. And we knew something wasn't right. And, uh, we were actually out to dinner, but it was like, it was such a slow progression really over four months. And it was little things like we went to dinner for my oldest son's birthday and I look over and she's just kind of smiling and nodding, but I can tell she doesn't know what anybody's saying. And, um, I told my husband that night, I said, I'm, I'm calling Portland. Like we got it. I'm calling her. I'm calling her oncologist. She's been trying to keep us out of it at this point. I'm like, does she know that something's up? What's going on? But I'm on everything. I was, you know, a contact for everything. And so I said, we need to get her in and get her seen. And so I, I took her to a brain MRI and she couldn't walk in. It had gotten that bad that she couldn't walk in, but she was still insisting on living by herself. And that's where I think the brain stuff is so much more difficult because if somebody can be lucid for a period of time and you can see them walk, but then there are the other periods where they're not. And that's when she would fall. And that's when she would get hurt. And so I... I'm thinking
SPEAKER_00:about my sister right now. Yeah. Because my sister died of a brain tumor. And I'm just thinking with Mindy, those things where she wanted to be so independent and then realizing she had to have help and how much that just irritated her. But it was a... It was just a fact of life. Like at that, when it would hit those points and then they, she would get better for a while, you know, and then, and that's hard to negotiate with somebody who is fiercely independent, wants to maintain that independence as long as possible, but feels it slipping away from them in various pieces. And it's not always the same pieces. That's what's hard.
SPEAKER_03:Right. Right. That's the hard part. And they, they, well, especially, I mean, Debbie had been on her own for 40 years. Yeah. 40 plus years. And, and here we are like, no, you can't do this or you need to do that. And it was like, what? Excuse me? Yeah. Like I'm an adult. And it's like, well, I know you're an adult, but like I went to pick her up for when I, when I went to pick her up for the scan, she had gotten really weak and I was having a problem opening her front door. So, She was forgetting things, couldn't tell if it was locked or unlocked and just sticking. So even though she knew she couldn't or shouldn't, she tried to walk around the back of her apartment complex to come and get me and tell me that she couldn't get the front door open. But she slipped.
SPEAKER_00:And
SPEAKER_03:so I'm knocking on her door. I'm thinking, I remember that day. Yeah. And she had slipped in the back. No, no, this was before that. Cause she had slipped in the back in the grass and someone found her. And, and I was like, dang it. You can't do that. Just call me. She's like, yeah, I didn't really think of that. And I'm like, oh my gosh. So we take her to get the scan. And then we had an appointment the beginning of September to go and get the results and what we needed to do, et cetera, et cetera. What month is this? September. So the
SPEAKER_00:scan and the appointment were in September.
SPEAKER_03:So the scan was in August and we had an appointment a week after because Donovan's birthday was the 12th. We went out to dinner that next week. I called them. They scheduled the appointment for that third week in August. And then we were going, um, like September 7th for the appointment to get diagnosis and treatment plan. Um, and I show up at her house and she didn't answer and I'm calling. And, um, calling and calling and calling. She won't answer. She went into the door. I walked around the back. Um, or actually I think one of the boy neighbors let me in. And now I'm usually super calm under pressure. Like I'm that person, right? Yeah. We fall apart. And, um, I fell apart during this time. I walk in and I find her, um, She had had to have gone to the bathroom. I don't know if she was going to get dressed. It became very apparent to me that she hadn't been in the shower in a long time because she'd been storing things in there, which meant that she was sponge bathing herself because she knew that she couldn't trust herself to get into a bathtub. And I'm like, you didn't talk to us about that, right?
SPEAKER_00:Was she unconscious or was she still
SPEAKER_03:conscious? She was unconscious until I screamed her name. And she came too. And it was just, it was bad. And I got her up, which I know now, like, if anybody ever passes out, just call 911. Do not pick them up off the floor. It's a bad idea all the way around. But in the moment, I wasn't, I'm telling you, like, normally, I'm like, I don't know why I even did that. Like, I'm smarter than that. Like, I know better. Yeah,
SPEAKER_00:but you're... Yeah, but that doesn't matter. It's like you're in fight or flight. You're reacting. And you see this person you love and you're trying, you know. All the stuff. I think it's a normal reaction.
SPEAKER_03:Yeah. So I call my husband like in a panic. And it was he automatically went calm, which normally I'm the calm one. And he's the one who's more like, well, what about this? And what about that? And I'm the one who's like, no, no, no, it's good. Like, this is what's going to happen. And we're going to do this. Absolute role reversal. I'm like, oh my God, this is what happened. And he's like, no, no, no. Listen, knowing that she was feigning, he like automatically takes it on him. Right. Cause that's what they do. And I'm like, no, no, no. Like, but I just don't know what to do. And he's like, I'm coming. I'll be right there.
SPEAKER_00:That's a sign of a good marriage when you guys can flip roles.
SPEAKER_03:Really. So he comes over and we get her in bed, but she's not coming to or anything. And well, she's coming in and out.
SPEAKER_00:Yeah.
SPEAKER_03:And we'll like pass back out. And
SPEAKER_00:how much of that was, maybe she got a concussion and how much of that is
SPEAKER_03:like, is this the tumor or did she slip and hit her head? Like, I don't know. There's no blood. I don't see any blood. bruises yet and she's gonna bruise anyways because her skin was super sensitive like I'm like I just don't know so we ended up calling 9-1-1 and she never went home and it was um up until that point I felt like we had really good people with us but and I don't want to say that hospice wasn't great. And the people that we worked with at the facility were not fantastic because they were, and they listened to everything that we asked for. But that was where we really had to advocate. Like we're in there and I'm like, I'm like at that point, she hadn't been taking any dexamethasone because she's off of all those kinds of treatments. Right. And I'm like, Hey, before we, we got the swelling down with this, this steroid. Can you give it to her? Like, can we see if maybe that'll make her lucid because she couldn't talk to us. And it was at a point by the time we got to the hospital that she would open her eyes, kind of look dough-like at us and then go back to sleep. And I'm like, no, no, no, no, no. Like we need to get the swelling down. Like I'm not done.
SPEAKER_00:Yeah.
SPEAKER_03:Like I'm not done. And, and so they gave it to her and she, I burst into tears the next morning when I walked into her room and she was like, Oh my gosh, Angela, you're here. And I was just like, Oh my gosh, you're talking.
SPEAKER_00:Yeah.
SPEAKER_03:Right.
SPEAKER_00:Because you need that time to transition from, she was doing all right. She's going to be gone. And I need something in that space.
SPEAKER_03:Yeah. Well, and you, you, um, You spend so much time fighting against it, especially in, I mean, we all fight against it. We fight against death every day. I don't even know how many supplements I take at this point so that my body stays healthy and like, oh, I'm low in this, so I better take some D3 because I live in Oregon and all those things. We're constantly fighting against death. Yeah. And against disease in everything that we do. Against decline. Against decline. But this is, fighting cancer is totally different. And I don't know if it's just because it's so eminent. If you don't. Yeah.
SPEAKER_00:And it feels so finite. Like, you know, not that death isn't finite, but once, when someone starts declining like that repeatedly with recurrences,
SPEAKER_02:you
SPEAKER_00:know, you've got this limited window. And you've got stuff you want to do and say and hear in that limited window.
SPEAKER_03:Yeah. Well, and like, you know, I mean, we, you get to, you even get to 75 nowadays. Like my dad's 72. Right. And he's definitely approaching that upper threshold of human beings in this country, but he's super healthy. So why can't he live to be a hundred? Right. Like that's where my head comes from. Yeah, exactly. Your mom's the same way, right? She's super healthy. Yeah, she's super old, but there's no reason why she can't get older.
SPEAKER_00:Don't tell her. Angela's really nice and she didn't mean that. I didn't mean that. That's not what I meant. She knows what I meant. She's 73 years old.
SPEAKER_03:Right. She's pretty much Terry's age. So it's like. But there's no reason that you can't get older than that. Like there's no reason why a hundred can't be super old. Right? Yeah, like my grandpa. My grandpa
SPEAKER_00:that
SPEAKER_03:lived
SPEAKER_00:at
SPEAKER_03:107 or
SPEAKER_00:whatever. But
SPEAKER_03:when you get a cancer diagnosis, it's different. Because if you don't do something, that number...
SPEAKER_00:Because the math changes. And that math changes constantly, up and down. And that's what's so like... I think that's what's so... Part of the weight of cancer is not just the uncertainty, but the large ups and large downs. Like it's... It's very, it's not like a smooth flowing cycle. It's these sharp drops and big highs.
SPEAKER_03:Yeah. Big highs, big lows, lots of indecision when we're used to being able to be pretty decisive about things, right? Like, oh, I have high blood pressure. I will, not me personally, but... I was going to say, oh. Yeah, you're like, you do. Really? No, no, no. I do not. But if you have high blood pressure, like you're diagnosed with high blood pressure, oh, well, you take this medication and then... you know, 9.9 times out of 10, it brings down your blood pressure. And so you are in a healthier range.
SPEAKER_00:You're right. It's the predictability of those kinds of things versus cancer. Right. Especially for people who are planners. Yeah. Like me. And let's just say someone else I happen to be speaking.
SPEAKER_03:I might be a planner. Yeah. Yeah. I might like to, you know, know that, know what's going to happen. And yeah, So
SPEAKER_00:you can plan all your contingencies, right?
SPEAKER_03:Right. Or just know how to deal with it. Like that was one of the hardest things, like looking at the kids when Debbie went into hospice. Well, and before that is like the decision makings. For a planner, trying to make those decisions is, I still... Angelo tells me all the time, you don't need to question that. But I question all the time if we made the right decision.
SPEAKER_00:Yeah.
SPEAKER_03:You know what I mean? Oh,
SPEAKER_00:yeah. Did we make the right decision? My mom and I have had those conversations about my sister and my dad. Yeah. And we still come to the same conclusion, but that doubt still comes back. Right.
SPEAKER_03:Like, well, you know, she's been in hospice. What if we've done this? Well, yeah. Well, because we got a call two weeks into hospice from... Yeah. Yeah. And right now they're doing everything they can to keep her comfortable as long as they can. And I'm going to yank that away from her. Like, how do I even, how do I do that for a risk when I know that you tried to do this four months ago and it didn't work? Yeah. Yeah. And I'm like, I don't think that's what she wanted. Like, I think she knew. I think she knew that it was declining. I
SPEAKER_00:think she knew that's why she didn't tell you.
SPEAKER_03:Right. I do too. So, but not being able to tell your family what's, you know, like the kids would ask, well, is grandma going to be here for Thanksgiving? Is grandma going to be here for Christmas? We don't know, sweetie. You know, what do you say? I don't know. That's what you say. That's your answer. I don't know. I don't know. And that's a really hard answer for somebody who wants to like give you responses, like give you a
SPEAKER_00:timeline.
SPEAKER_03:He was eight. Okay. He was eight. Um, but still like a second grader.
SPEAKER_00:Yeah.
SPEAKER_03:Like it was, um, or I guess he was in third grade. He was in third grade. He was eight, almost nine. Okay. But still a third grader being like,
SPEAKER_00:I mean, it's bad for Donovan and Alyssa too, no matter how old. Right. Angelo. I mean, it's not the, for anybody having those conversations is brutal. Yeah. No matter which side of them you're on.
SPEAKER_03:Right. So my youngest too, it was the first person that they'd ever lost that they'd been that close to. Oh,
SPEAKER_00:wow.
SPEAKER_03:You know, and like to be hit with that deep of a loss. It's
SPEAKER_00:something so close for the first one.
SPEAKER_03:Yeah.
SPEAKER_00:You know what though, Angela, I look at the way you guys did that with them.
SPEAKER_03:And
SPEAKER_00:I think you set the, you set an example and you set a pattern for them because you guys were very upfront with them. Right. You didn't try to sugar saying you didn't shield. You didn't sugar. You didn't try. I'm not saying you didn't try to shield Sebastian from some of the brutality of it,
SPEAKER_03:but we talked to him at an age appropriate level.
SPEAKER_00:Thank you. And, and doing that honestly, I think gives your kids a much more functional way of dealing with death.
SPEAKER_03:Right. So we're open with our kids about at age appropriate levels, about most things when it comes to life. Like I've always subscribed to the idea that you can pretend like you're shielding your kids from things, but they hear it all.
SPEAKER_00:Right. And they feel it. And if they don't hear it, they know something's off.
SPEAKER_03:They know something's off. They know something's up. They hear you talking. Like, even if you're like, go to your room, if you think that a kid's not going to stand at their door and listen, you're fooling, you know what I mean? Like, they're going to stand there and listen. But we did, we talked to them at a very age appropriate level and we did not keep them out of, so hospice was really hard because she wasn't herself. Right. But she, we didn't keep the kids out of hospice. We didn't keep them out of the facility. They went with us. We didn't take them to the hospital. She was only there for two or three days, though, before she moved into a facility. And the minute that we could, we took them. Just because I'm not going to hide that from them. They love her. They love her as much as I do. yeah, they're kids, but their emotions are the same as mine.
SPEAKER_00:Well, and also making it something, it makes it something bad or dark or whatever, if you're not sharing it.
SPEAKER_03:Right. And I think that it was probably, I don't want to say it, it was, I don't want to say it was easy for Sebastian, but kids are so resilient. Like,
SPEAKER_00:Yeah. And you hate that they have to be.
SPEAKER_03:Right. It was rough on him, but it appeared to be rougher on Alyssa and Donovan. And I'm not sure if it, they're both more internalizers than Sebastian.
SPEAKER_02:Sebastian talks.
SPEAKER_03:He talks and he'll come out and like, he'll, he still to this day, like he'll come out and he'll, you know, he'll come out really sad and he'll say, I just really miss grandma. And I'm like, you know what, bud? Me too. Like I miss her every day. There are lots of things like Angelo and I'll have a discussion and I'm like, where's your mother when I need her? Like I used to think that about my grandpa before he passed away too. Like my dad and I would argue about something and I'm like, where is grandpa? Like grandpa always was like, Terry, what are you doing? And so with Debbie, Debbie would do the same thing with Angelo. Well, Angelo, you can't do that. But, you know, Sebastian talks about it more so. Alyssa talks about it a little bit, but not to that extent. And it was hard for her to be in there. Oh, of course. With, you know... at the end when she's not talking and she's sleeping the whole time, but it was an interesting thing. Sebastian would go and he would give her a kiss and a hug every time. And he'd be like, I love you, grandma. Like those last, you know, the last week and a half or so where she wasn't waking up at all. And she
SPEAKER_00:would, everybody says hearings, the last thing to go.
SPEAKER_03:Yeah. Cause she would open her eyes wide when he would whisper in her ear and then they would close and she'd go back to sleep. So
SPEAKER_00:the lady did that the last time I went to see her when I flew in and I went, it was like a Sunday afternoon and Jeff said, you can go up. And I went in and he said, Heidi, he whispered to her, Heidi's here. And she opened her eyes and looked at me just for a little bit. And I just told her I loved her and whatever, you know, but I, I, I think it's important to, realize that they're going, but not treat them like they're gone before they're gone. Does that make sense?
SPEAKER_03:Totally. Yeah. To still be there. Yeah. It was, it was, um, another shocking thing was the number of people in nursing homes. So she was in a nursing home. She was in the hospice wing of a nursing home or she was in a hospice room in a nursing home, but how many people don't get visitors? Um,
SPEAKER_00:How
SPEAKER_03:many people don't have somebody coming and seeing them and how it was weird to me to be recognized by the staff is it's so awesome how often you guys are here for her. And I'm just sitting there and I'm like, I feel guilty going to work. Like my mom would go in every day at noon. And she would eat lunch with her and sit with her and sit with her. And my mom made friends with the guys and the women that were there for other things in the lunchroom. And, you know, she would go just so that she could report to us so that when we went that day, we would know what to expect. But she was like... or the nurses would be like, the fact that your mom comes in and the fact that you guys are here every day and all of that. And I'm like, I just don't know how to do this any other way. Like I had to go to a conference the end of September and she was, you know, in decline. And you remember, I was super worried about going, you know what I mean? Like, what if something happens? And I remember you being like, It's not likely, but even if it does, you can just get on a plane. And Angelo being like, you can just get on a plane. Like you can be home within a short period of time. You going in there every single day is not going to change the inevitable.
SPEAKER_00:Yeah. I remember saying that to you. Yeah.
SPEAKER_03:Yeah.
SPEAKER_00:Well, and also the fact that you, you being there every day, she knows you love her.
SPEAKER_03:Right.
SPEAKER_00:She knows you love her.
SPEAKER_03:Right.
SPEAKER_00:You've shown that.
UNKNOWN:Mm-hmm.
SPEAKER_03:Yeah.
SPEAKER_00:So let me, okay. So how long was it from when she went into hospice to when she passed?
SPEAKER_03:So it was five weeks. I think it was five weeks.
SPEAKER_00:Which feels like an eternity, but I'm also grateful she didn't have to stay in that state for any longer than that, you know?
SPEAKER_03:Yeah. I'm pretty sure that she went in September 7th and passed October 19th. Okay. Yeah. So go ahead. No, no. So it was about five weeks that she was in there.
SPEAKER_00:So any, we've talked about a lot of these things, things you wish you'd known ahead of time, or you do differently if you did it again, are there any things we haven't already talked about?
SPEAKER_03:Um, things that I would do differently. I would, the only thing that I would Mm-hmm. About the decline in the end. And do I question if she had told us more and if we had pushed more, if things would be different? Yes. Right. And, but do I think I would do it any differently? Probably not. Cause I was trying to respect her boundaries. So I don't think that I would have done anything differently.
SPEAKER_00:Which I bet was really, really hard for, not, I bet. I know it was really hard for you. Cause you'd say sometimes I wish I could just say,
SPEAKER_03:Yes.
SPEAKER_00:Yes. That wasn't what she wanted.
SPEAKER_03:It wasn't what she wanted. So I had to respect her boundaries. Like they always joke about me, Angelo and Debbie used to, because Debbie would, Debbie would say like through this treatment, Angela is with me the whole time. Like I was that person. I was going to go to the doctor with her. I was going to make sure the questions were answered. I was doing all of that. When it came to end of life, I was not allowed to make any decisions because her and Angelo were certain that I would hook her up to every tube I could just to make sure that she didn't leave me. And it's true. Angelo and I have talked about it and he's like, I can't wait till these kids get old enough that I can designate them instead of you. Because he's like, I don't want to be in a vegetative state with you just hoping that medicine could make me better tomorrow. But so, yeah, I, I, I'm not good with boundaries. And so that's, that was difficult trying to allow her, but I don't, I still don't think I would have done anything differently unless she had allowed me to. So it would have been totally on her except for I would have pushed for a second diagnosis when we were told there was nothing to worry about. Cause I, in my heart, I was like, I mean, I, I can still see her and I in the elevator leaving there and being so happy, but me thinking, thinking, and even saying, but we trust your doctor so much. I mean, I'm really glad that that's the diagnosis, but I do trust him a lot. Maybe, but nah, yeah, no, we're probably good. You're right. We're probably good. It's, it's fine. That's
SPEAKER_00:the only thing I would do for us. her boundaries type of thing that you had to respect.
SPEAKER_03:Right. I think that had I pushed it, it, it would have, I could have gotten her to do it, but that's the only thing that, that, uh, that I would change.
SPEAKER_00:But she's a girl. She was a grown woman. Oh
SPEAKER_03:yeah. And
SPEAKER_00:at that
SPEAKER_03:point I had her full faculties about her and would absolutely argue with me about it.
SPEAKER_00:And that's not on you. Okay. Um, your biggest, what you've learned are the biggest takeaway.
SPEAKER_03:My biggest takeaway is that doctors are not perfect in any capacity. We have to remember that they are human, just like we are, and that you are the best advocate for either yourself or your family member. So you have to advocate. If I had not advocated for the dexamethasone because we were putting her on hospice, there's a good chance that they wouldn't have given it to her because that wouldn't necessarily be a course of treatment for someone on hospice in her condition. But we wanted to be able to have lucid conversations with her as much as we could because So we asked for that. They complied. It was the same way through many of her treatments, us saying, hey, what about this? And them being like, yeah, we can try that. Absolutely. And things worked and things didn't work and that's okay, but you have to advocate for it and remember that the doctors are human. Like they make mistakes. They do things really, really good. But they, they, They can make mistakes and they can not think of things. I mean, I think about it
SPEAKER_00:all the time. And they don't know you. Right. They know this in general, this disease or this disability or whatever, but they don't know you. And you've got to give them that information.
SPEAKER_03:Right. Well, I think we put them on a pedestal and treat it as if they are infallible on a lot of levels. And it's like, well, listen... I do not fault the doctor for not giving her a second diagnosis or not diagnosing it in the first place. Based on what he knew and his opinion, that is what he thought. Just like I don't fault the ER nurses for not giving her a steroid based on their protocols and what they knew. That's what they were doing. Or that was their standard course of action. It's not their fault at all. But if you know something... Say something. Yeah. There's nothing wrong in asking for it. No,
SPEAKER_00:I view. And, and I, I view my doctors and we have this relationship where it's like they're consultants,
SPEAKER_03:right?
SPEAKER_00:They're consultants and they've got this vast amount of knowledge and they're incredibly, incredibly smart. Exactly. And they give me information, but the choices are all me. Correct. You know, The choices are me. And I think taking that kind of personal responsibility, not that you guys didn't in your situation, that's not what I'm saying, but I
SPEAKER_03:think
SPEAKER_00:it's also empowering. Right. It's like, okay, you guys are really good at all this. So bring me all the knowledge you have. Let's all sit down together and make some choices.
SPEAKER_03:Right. Well, and I think a lot of people are afraid to gather that knowledge also.
SPEAKER_00:It's scary.
SPEAKER_03:You know, it, it, oh my gosh, you know, You look things up and you're staring at this and it's like, like I have, I've had to, you know, when, when it came to Debbie, when it came to you, when it's come to other people, like you look stuff up and you got to like gulp. Okay. That's the survival rate. I need to not look at that. I need to remember what Debbie's oncologist told me that those are not even accurate anymore because they're based on old information and things have changed. Not only that, but it's like I told you many a times, there is no reason why you can't be the 10%.
SPEAKER_00:It's true. And I was the 5%. And that's why I didn't do any research. You know me. I research things graciously. But with my stuff, nope. Yeah. Because it was, I didn't need to know the odds. I had very, very, if you just look at the odds, I had almost no chance. But I didn't feel like that was it. And so I was just like, I don't even know the information because this is where I'm going. And then in this case, it happened to work. And I'm very grateful.
SPEAKER_03:Well, not only that, but even when you talk odds, like if it's 90%, that means that 10% of people are good. So what do I need to do to be 10?
SPEAKER_00:Yeah. Even my stepdad said the same thing.
SPEAKER_03:Yeah.
SPEAKER_00:You've been a 5% person all your life. No reason this should be any different.
SPEAKER_03:Exactly. Exactly.
SPEAKER_00:And like, you're right. What do I need to do to increase my odds of being in that, that little window?
SPEAKER_03:Exactly. Uh,
SPEAKER_00:any tips and tricks we haven't already talked about?
SPEAKER_03:I don't know. I just think advocating, advocating, advocating and communicating are the biggest two. Like, I think it's really important to talk about it. I, I firmly believe in therapy of all kinds, whether it whether it be seeing a professional or just talking with people you trust. You
SPEAKER_00:can't process this stuff alone.
SPEAKER_03:I don't know how I was so, I was so lucky to have people in my corner that I could talk things through with when I was going through this. Like, I could call you up and you would talk me through like what was going to happen here, what was going to happen there. I had my parents who were so supportive. And
SPEAKER_00:not just with their words, with their actions. Your parents love you very much. That's obvious.
SPEAKER_03:Right.
SPEAKER_00:But like your friend going to the hospice place every day and your dad being so concerned about you.
SPEAKER_03:Right. Right. And like I could walk in and if I was upset or if something was going on, like Michelle was there right in the office and she would come over and just hug me and be like,
SPEAKER_00:she's a mama bear too.
SPEAKER_03:Right. And so I was really lucky to have people around me who would listen, who would give advice, who would help whenever needed. I don't know.
SPEAKER_00:Think about all the people on our team.
SPEAKER_03:Oh gosh.
SPEAKER_00:We're like, we're taking up the slack. Don't worry about it. Go.
SPEAKER_03:Yeah. Every single person on our team was like that. Like it was, they each did their own part to make it so that I could deal with something that was extremely traumatic for me in that time. And everybody did everything they could to make that easier. Yeah.
SPEAKER_00:Because they love you and they want to help.
SPEAKER_03:Yeah. So I guess that's the trick. The trick is to have people around you that love you. Surround yourself with love. I like that. And I think that's so important. And I think we've really learned that in the last year, especially collectively. I think it's really important to... Surround yourself with love. Surround yourself with people that really genuinely care about you as a person, accept you for who you are. I know I cannot be easy to deal with in these situations because like you, I spin out on things. And I do the what if game and okay, if I do this, then this is going to happen. But if I do that, then it could happen like this. And then the, and it kind of spirals from there
SPEAKER_02:occasionally.
SPEAKER_03:But, but it's, it's necessary sometimes. Like that's how my brain processes things. So had, had you and others not given me the space to be like that, I would have gone crazy. Yeah.
SPEAKER_00:And then gives you a contingency plan for all these different rows that you could go down. So when whatever happens, that's why you can be calm and step in is because you've already thought this through.
SPEAKER_03:Right. But I couldn't do that if I didn't have people around me who would love me through it so that I could talk through it, but be there to catch me when I fell and Or support me through the decision to the end. Like I just couldn't, I mean, we even had some of Debbie's family. They were coming down. Oh my gosh. They came down almost every weekend. And I do, I think they would have, I think that they would have lived here. Had we said, just come and stay here until, but there's that. inability to say when until is going to be, but it's entirely possible that they would have lived here for five weeks. Had we said, come live here for five weeks.
SPEAKER_00:Well, you, you guys had a great support system, a very large circle of people who were there for you.
SPEAKER_03:Right. Right. Well, I just think that's necessary. Like it breaks my heart that there are people who have to navigate this by themselves. Yeah. And there are, I can't either. I can't either.
SPEAKER_00:Okay. So good things, bucket list items, a couple of those you want to share and your favorite place or places to be. I
SPEAKER_03:don't know about, I was thinking about that today, the bucket list. And I think all my bucket list has to do with travel and
SPEAKER_00:Who doesn't?
SPEAKER_03:Yeah. There are things that I want to see in the world that I have not seen. I want to see the Mayan ruins. I want to see the Colosseum. I want to be in Greece. I want to see the Vatican. I want to be in... I want to see the French countryside and everything Paris has to offer. But, you know, one of Angelo's bucket list places that is now one of my bucket list places, as long as I can sleep in a bed, is Rajan Pot. So it's just this... Where? Is it in India? I think it's in the South Pacific. It's gorgeous. It's just beautiful. Send me pictures. I will. I will. It's beautiful. It's beautiful. But yeah, it's mostly that just travel, getting out and seeing things with my own eyes.
SPEAKER_00:Yeah.
SPEAKER_03:You know,
SPEAKER_00:there's something about that that just, I don't know, kind of defies description.
SPEAKER_03:Yeah.
SPEAKER_00:Okay. Favorite places, place or places to be.
SPEAKER_03:My favorite place to be is just near water. Usually. So, um, I just like to be near water, whether it's the beach, like I could just sit on the beach and watch the waves for a long time, or I could sit at the base of a waterfall and just watch that. Or Loon Lake. Or Loon Lake. I do love Loon Lake. I love, but there again, I'm sitting on the beach watching the lake. Um, I don't necessarily like being in water, depending on where it is. We're not going to start with my fear of deep water, but I love being near it. I love seeing it. I love hearing it. We stayed in a house on the coast a couple of weeks ago and just to be able to wake up, look out the windows and see the ocean was perfection for me.
SPEAKER_00:Me too. Yeah. As you know, but I
SPEAKER_03:do go in the water and it freaks me out when you go in the water and especially down there. Cause while I understand that the gators don't live in the ocean, they're still in the water. So why couldn't they make their way over there?
SPEAKER_00:I'm not even going to show you the picture I saw from Hilton head, like just gator on the beach. I'm not even kidding. Anyway,
SPEAKER_03:that's my point. The gators could get, Oh my God. Gators and sharks? Oh, hard pass.
SPEAKER_00:Well, thanks. Thanks for being my friend. Thanks for doing this. And I think you come at it from an interesting perspective because you're a caregiver but not a spouse.
SPEAKER_03:Right.
SPEAKER_00:And I think that's, as our parents get older and as people we know get older, that's more and more the position people of our generation are being put in. And I appreciate the lessons.
SPEAKER_03:Well, I appreciate you because like I said, I don't know that I've ever articulated it, but I don't know how I would have navigated that had I not had you as a sounding board with all of your experiences and everything you'd gone through. And I am so proud of you for not only being resilient and kicking cancer's stupid butt, but... Now putting this out there for people and normalizing the conversation around it, because I think that a lot of people shy away from the conversation around cancer because it's scary and it's not comfortable and nobody wants to really talk about it. Because I know that I hadn't really talked to anybody about it until this happened, but I know that it happens all the time around us. So thank you for doing this and putting it out there. If you only help one person, you have done your job.
SPEAKER_00:Thanks lady. Yeah. Thank you. Angela is a great friend and she's also a great example of how to love and support and help somebody as they're approaching the end of their life here. Over the next few weeks, we're going to be selling a house and having a kid graduate from high school and moving across the country. So we're going to be probably putting out podcasts on about an every other week basis. And I really appreciate your patience in hanging in there with me until things get back to a more normal schedule at the end of the summer. Also, would you please rate your and share and like this podcast so that we can hopefully get as many words of hope to as many people as possible. As you go about this world this week, please do something nice for somebody else. Count your blessings, look for the good, and make it a great week. Thanks for listening.