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00:00:01
E01: Pilot
56 Plays2 months ago
On the first episode of Not Us, we take you through our story. From our Dad's car crash that forever changed our lives; to the days sitting in the hospital figuring out what the hell was going on; to the weeks spent post-accident patiently waiting for answers; to the subsequent months, post-diagnosis, wondering how we will ever survive.
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Transcript
00:00:00
Speaker
The point of this is for us to get our feelings out and hopefully we can have productive discussions and helpful conversations and build a community for other people that are going through certainly a similar thing, but also just a hard time. Hey everyone.
00:00:20
Speaker
Hi. I'm Hayley. I'm Emma. And this is the Not Us podcast. Thanks for listening. feel like there's no better way than to start from the beginning. Very beginning. All right, so last April, April of 2024, Hailey and I were both in New York. I received a phone call on a Friday morning from my mom, which is sort of weird. Like sometimes she calls in the middle of the day, but every time she calls me in the middle of the day, if I'm at work, I'm like, don't fucking call me at work. Like send me a text. If you're having a problem, just text me. So I didn't pick up because I was on a call and I figured it was just one of those like,
00:00:55
Speaker
regular. Oh, she just wanted to check in because she didn't send a text. So I'm like not really thinking about it. But in the back of my head, I'm like, that's a little weird. Like maybe something's up. Who knows? So I call her back and she's Panicking and if you know our mom she's always sort of like pop scene and doing weird stuff Yeah, she's always floofy, but she's not her she's never fully panicked like this woman doesn't get scared She gets weird, but she doesn't get scared. She's not she's not a scared person. She's very very tough Yeah, I know she's tough as nails. So when she called me I could hear the panic in her voice and I immediately knew I something was wrong and she's basically like i think dad was in a car accident but i don't know where he is and he won't answer my call and i was like okay okay like what like what's going on like you'll find my friends where is he and she's like he's 30 miles away in linfield massachusetts which is not anywhere near where we live there would be no reason for him to ever be in that town
00:01:52
Speaker
No, no reason. So I'm like looking at him. I'm fine, my friends. I'm calling him. I'm trying to get him on the phone and she keeps telling me he's answering my phone calls, but he's not saying anything. And at this point I'm like, Oh, someone kidnapped dad. Like I, I guess it's not kidnapped if you're an adult. I'm like, someone's like, he's been super abducted, but he's totally abducted. It's a car jacking. Like that's what's happening. And I finally get him on the phone and he's like, he sounds like he's in another universe. It's sort of perpetuating my car jacking.
00:02:22
Speaker
see No, it sounds, ah the way you described it to me is like, I am imagining someone has a gun to his head being like, speak slowly and talk like this. Like that is exactly what I thought. Cause he basically gets on the phone and it sounds like, it does not sound like, it sounded like he was at a trance and he's like, I'm fine. I got in an accident. I didn't hit my head. Like he kept saying, I didn't hit my head. And I'm like, bitch, I didn't ask if you hit your head. Like I said, where are you? And he he kept saying,
00:02:51
Speaker
I'm fine. I'm with you. And I was like, Oh God. Well, I'm in New York. So that's not right. You're not in the car. Yeah. I was like, this is, I was like, it's Emma. So we know something's wrong and we find out somehow. Like I'm on find my friends. My mom figures out somehow he's in a, he got in a car accident and he's in a tow truck. Like he got, she got that much out of him. They're in a tow truck and he's towing him back to a certain place. Like we sort of were able to track him on, Honestly, thank God for fun, my friends. Thank God. No, he'd still be in Linfield probably a year later. But anyway, so all this is going on. And my mom's like, I'm gonna get in the car, try to find him. Can you call the police and tell them to like, send an ambulance? It doesn't sound like he's okay. And I'm like, all right, so I get on phone with the police. They're super confused why I'm calling about an incident in Boston when I'm in New York. So I've sort of explained all that to them.
00:03:39
Speaker
but they were super great. I guess it was sort of fight or flight and I guess I wanted to fight. You and Mob like really truly saved his life and the way that you guys handled it and the tracking and phone calls and being so helpful even when you were in New York is crazy to me, but I'm just grateful that you guys were able to figure it out and help him. Yeah, honestly, I i almost like blacked out the experience. Like I sort of have to really sit and rock my brain to like get back in my apartment like on the phone with the cops trying to figure out what's going on. But anyway, yeah, so I'm on the phone with them. They've sort of figured it out. We figure out he's was towed. He basically got in a car accident, convinced the people in the accident that he was fine, even though he was acting and talking all weird. Like it's not like they know or don't write like they could have thought he was a free.
00:04:26
Speaker
Yeah, which but whatever, like I'm sure they do with freaks all the time. So we figure out he's like at this towing yard, like somewhere in Boston. And my mom's able to get there. I'm able to get the ambulance there. My mom beats the cops there. And now like we're both sort of out of the situation. Like it was out of our hands. This is all from my mom's lens. I guess she got there and my dad was just standing in the middle of a parking lot. And like, yeah, like sort of the dirt patch near a rest stop, like a place where you'd pull over on the side of the road and go pee. That's how I picture it. Do your poop on the ground. you
00:05:01
Speaker
Really talk about the deer poop. I remember that we knew that it was like dirt and there was deer poop. And she's like standing with like backpacks slung over one shoulder, just like staring off into space is how she describes it. Yeah. Like he looked like something was very wrong. And he wasn't responsive in the sense of like she was saying his name, she was saying Doug, Doug, and he was staring straight ahead. Yeah. Obviously very freaky. I mean, I think I can't imagine that, but she then describes that once she got to him,
00:05:29
Speaker
and like touched him like grabbed him that he just started he hit the ground yeah and i started having a very aggressive seizure yeah filming at the mouth sort of how when i picture a seizure ah sear salad when i picture Caesar When I picture someone having a seizure, like in a movie, that is how I, my mom describes it. And I think it was just like, like convulsing. But she was holding him, like caught him on the ground. Honestly, like, I don't know. Like he would have hurt, like he was moving, like convulsing, you would have hurt himself if she hadn't been able to sort of like, catch him down too. And like a lock or whatever. So that's going on. The ambulance gets there, like pretty soon after he gets in the ambulance and he goes right to Boston medical.
00:06:10
Speaker
which was the closest hospital. It's a trauma hospital and they knew he'd been in a car accident. He gets in the ambulance and they basically induce him into a coma, a medically induced coma, right? Something like that. Yes, to stop the seizures from happening, basically. Yeah, to stop him from seizing. They needed to intubate him so he could breathe, make sure he was getting oxygen. I guess this is like standard ambulance procedure. I've never been in an ambulance, like I don't know. I have. Well, I know, because when you had the stomach flu and you said call an ambulance,
00:06:40
Speaker
I had the neuro-virus and we called an ambulance. I don't think you should tell me so much. what Because it's embarrassing. So in the ambulance, where you were you still on the phone with mom during this? like No. she So at this point, I basically was only responsible for like finding, locating dad and then sendinging and then sending an ambulance. But I didn't even know like about the seizure or anything until hours and hours after. like I was basically like, oh, great. She found him. We're good. But I hadn't heard from her. And then it probably felt like hours. It was probably like one hour.
00:07:13
Speaker
she called me or texted me and was like, dad had seizure at hospital. I was like, what the fuck? Like, okay. So we we get in touch with her enough to know that they're at the hospital. He had a seizure. And we're like, this feels bad. This doesn't feel like also like our dad isn't someone who has ever had a seizure. He's not epileptic. It's not obviously it's not a common thing. You sort of your mind goes. I think both of us are people who sometimes think the worst.
00:07:41
Speaker
Well, at this point too, it was also made clear that he had driven 30 miles in the wrong direction. Something was up. Something was up. We didn't know why he got there. The whole thing was weird and it was giving something's wrong.
00:07:57
Speaker
So i I was in New York with my husband. Hailey was... I was actually at my alma mater. Our alma mater. Right. At Colgate. He was a good friend of mine. Susie, you're younger. It was her birthday. So we went and surprised her. But like very uncommon random weekend that I would go to Colgate. um And we were there. So my mom knew that I was celebrating a birthday. She knew I wasn't in New York with you.
00:08:19
Speaker
so i think she did not tell me until a little bit later and she just called me or she texted me and was like can you talk and i was getting ready to go to dinner and she just called me and was like hey again could tell something up in her voice um not fear but like a little bit just something's wrong you can tell yeah like any phone call and she was just like daddy was in an accident obviously i started hysterically crying and like The fuck do you mean? Tell me more. And she's like, we don't really know. He's okay. He's okay. But he was an accident. We're at the hospital. So I obviously like she's she's sugarcoating it for me. She's under playing this because she didn't want me to feel like she didn't want us to feel like we right. That's exactly. But then I got off the phone with her immediately called you and you were like, Haley, come home. Yeah.
00:09:04
Speaker
which I'm glad you did. It just, there was enough things that were going wrong that it felt like, I mean, we weren't going home thinking like, oh, our dad was in a crazy car accident accident and he's going to die. Like that's not what we thought. We were just sort of like, something's wrong. We want to be on the ground of whatever's happening. I kind of thought he might be dead.
00:09:20
Speaker
Really? At one point. I don't really like even remember. I think I blocked it out but I just remember, so I flew out of Syracuse and met Emma and her husband Will in the airport and then we went home together and I just remember like in the Uber drive and all in the plane, I just was like silent, like staring, crying. Oh you know what? But I was sort of in shock. I didn't even tell you this before you flew.
00:09:39
Speaker
But when mom called me and after I was talking about the seizure and was like, we're at the hospital, we'll figure it out. She said they scanned his brain and they saw a mass in his brain. She actually didn't even say that to me. She was on the phone with Will and Will was on speakerphone. She was talking to him because she didn't want me to even hear that. So I heard that because they're on speaker and he was in the room next to you. And I was like,
00:10:01
Speaker
ah lost it. It's also just so crazy how we had no fucking idea what was going on. No. Like the doctors didn't know what was going on. It was a mystery. It was very freaky, the unknown. That's so anxiety provoking, but also just like, is he okay? Is he awake? Is he still have a tube in him? Like, what the fuck happened? Well, why did you have a tube? yeah Yeah, sure. A lot of questions. So we fly to Boston.
00:10:25
Speaker
Hailey from Syracuse and Will and I from Manhattan, we get there, we immediately go to the hospital, and our dad is in the ICU, intubated. He still has tubes. It was scary to see. it was sort of like The whole thing was just very surreal and very weird. and and we get there and they're about to take the tubes out. They're like, he's conscious. We're like, he had the tubes in, but I remember we both grabbed his hand. He looked at us, squeezed out. He was aware and awake, but but it was crazy. But he was like freaking out because he was like, what the what is this? yeah And he couldn't talk because he had the tubes and he's very like, he's not, not that like there's anyone that you would want to intubate, but he's not the candidate for that. Like he was very thrashy and upset and didn't want to have a tube down his throat. I mean, who wants one? No, but he is especially didn't want one. He's like the last person who would want a tube. The leader last person I would choose to tube. Yeah, exactly. So anyway, he gets there. They're about to take the tube out. So they do that. And I left for that. I couldn't watch it. So they take the tube out and I swear to God.
00:11:31
Speaker
it what Our dad likes a bunch of stuff, but one of the things that he likes a lot is modern-day rap culture. I think he just... He loves rap. He loves rap. He loves, like, Ratomi Kwon, R.I.P. We lost a good one this year. He loves Drake. Like, he just... I think he's fascinated by it, and it's sort of like he makes fun of it, but he really loves it. He does. I also think it started off as a joke, like, to be, like, funny for us, because we like rap, but, like... But he fell into it. He, like, rapped too close to the sun.
00:11:58
Speaker
Yeah, it's like he had made a playlist for me and there's just Bertone Glaun on it. Right. And then also with like Neil Young and like Led Zeppelin, Bertone Glaun. But anyway, the the reasoning for explaining that is they take the tubes out and I shit you not he grabs my hand. And he goes,
00:12:15
Speaker
you know what to do with the money when i die and i was like what like what are you talking about and he goes you know where the money is he's like put the money in the grave like he's trying to quote this drake song i'm like how about hey i'm awake what happened like what's going on also like the reference of death too like you're literally like in the hospital and we don't know what's going on he goes straight to drake he's like emma put the money in the grave he's dead serious no he was not kidding it was my first reaction was like Oh, he's still him. Like nothing's changed. Like he's got the sense of humor. He's ripping the jokes. Like I, in that moment I was like, Oh, we're safe. Like we are good. We are safe. Um, little did we know, but anyway, so this is day one in the hospital. He's dropping Drake. he He has to stay there overnight and one person's allowed to stay with him. So my mom had stayed the night before I got to stay that night. Um, he was still in the, um, I see you. I see you. Yes. At this point.
00:13:08
Speaker
he's still nice to you but the next day he got moved to a room and again they had looked at his scans and they were basically like we see that he had a seizure we think that he was having seizures leading up to what they call the grand mal seizure the big seizure they think he was having petite mal seizures. So little seizures that the body doesn't really register, but that are going on with the neurons in the brain. Their hypothesis was that he was having these little seizures. And that's why he drove 30 miles in the wrong direction, didn't know where he was, was acting super weird in the car. And that's why he got in the accident. Yes. And that explains like he doesn't remember it at all either. So the accident on the phone with you being like you're with me like all of that um that would make sense if he was having obviously some unusual brain activity yeah which they sort of concluded that why it happened also he had no injuries pretty much from this accident which is such a blessing because his car was completely totaled oh no don't you remember he like hurt his pinky finger he was really upset pinky finger pinky nail was like black and blue a little and every five seconds he'd be like
00:14:15
Speaker
um My hand, my nail. And we were like, I was like, dude, you had your head chopped off. And you're also like, they're telling you you're having seizures. And he's like, my pinky, my pinky. Like he's this guy. He's a little dramatic, but he's going to hate that. Anyway, anyway.
00:14:32
Speaker
So it's day two from the hospital. He gets moved to another room and we're basically like, all right, like weird that he had a seizure. Maybe he has epilepsy. We're not sure what's going on. They're doing all these scans. I thought like autoimmune for a while. That's what they thought. They were looking at infections, which can cause seizures. They were looking at autoimmune disorders. They were looking at like neurosarcadosis, which is some other autoimmune thing that could cause seizures.
00:14:58
Speaker
They scanned his entire body and I guess it's really difficult to see what's going on in the brain from an MRI because of just all of the regular brain activity going on. So they scan his entire body and they see a nodule as they were explaining it in his lung. So the theory after like a day is lung cancer, right? They're like, maybe he has lung cancer and has this weird phenomenon going on where the cancer in his lung is sending messages to his brain.
00:15:25
Speaker
to cause inflammation in his brain what they could tell at this point is his brain was super inflamed and they're just like what how many seizures were there what was happening with the seizures why did they happen like he's on all of these steroids done all these medications to make sure that he's not having big seizures again But he is having still this activity. So after a day in the hospital, we thought he was going to get to come home, but they revealed to us that he is still having seizure activity in his brain. And that was sort of the weird, we were like, oh, so we've just been sitting here at the hospital hanging out with him and he's still having these small seizures. and Like it's crazy to think about that. We just didn't know.
00:16:04
Speaker
right but you can't really and he didn't know either like you can't like there were some moments where he was like a little weird but we're like hey the guy just got in a car accident we did think that he had hit his head because he was being strange and like he's in the hospital like it's disorienting it's disarming he like it wasn't a big red flag that he would seemed off also you were saying how his brain was very inflamed and it was very swollen and it was sort of like the chicken or the egg conversation of okay is his brain swollen be something's wrong and that's what caused the seizure or is his brain swollen because he hit his head and the seizures and making his brain swell like it sort of was a back and forth for both right so that was hard I don't know it was hard to understand what caused this and they didn't know but we had to wait for the brain to stop swelling but he was still having this activity which was making it swell so yeah a whole ordeal at no point though was anyone like
00:16:52
Speaker
Oh, it's like probably brain cancer. like we had We really hadn't been thinking about that. We had actually celebrated that it wasn't brain cancer. Was that after the second night? After the second night, the the guy in the ER was like, oh yeah, like don't worry. It doesn't look like there's cancer in his brain. We like literally we went to our favorite Asian fusion restaurant, Myers and Chang, shout out. so So amazing. Oh, I want it right now. We went there when we cheers and we were like, thank God it's not bringing cancer. So I mean, that didn't age well at all. It feels like we could talk about this beginning of what has now been this long journey forever because our dad was in the hospital for 12 days. We were there for the majority of the time. Our other sister came back for a good amount of the time too. And those 12 days honestly felt like an eternity. Like we would wake up in the morning, go to the hospital, try to get in early,
00:17:40
Speaker
bring food, go for a walk. It just felt like time was standing and still. Nothing was happening outside of what we were doing. and it It sort of was standing still for us. like We were both barely working. it was the whole i it just like We kept waking up and thinking, like oh, maybe we're in a bad dream and this weird shit isn't going on. and All of us were literally losing our minds, sitting out on school all day. like We were like,
00:18:06
Speaker
I don't even know anything. Like we, we were just like all sorts of, all of the doctors thought we were absolutely insane. We were waiting for them to like, we're being very out of the sight board. Yeah, it was, it was a lot, but anyway, so we're there for 12 days. They're trying to get his petite mall seizures under control. He has like all these nodes attached to his head. He's going through all these tests, all these cognitive. it put an eeg So it was like all the leads on his head tracking his brain activity. And he had to carry around a little sack. He looked like a genie. We called him the genie.
00:18:36
Speaker
I wish we could show a photo but he would not like that so we're not going to. Just you can imagine it. Yeah like with a little cat, a genie if you've ever seen a lab in. Yeah he looked the genie. Like the blue genie but no man in a hospital. And a blue gown. A blue gown! There you go. Anyway so all this is going on after 12 days they're like All right we put in all of the tests for all of these different things that we think it could be the leading theory was that it was lung cancer that they were like oh we can take that out real good like that won't be a problem so we were sort of thinking like we left the hospital they got the seizures under control he was on a ton of and still is on a lot of anti seizure medication.
00:19:12
Speaker
A lot of steroids to help the inflammation in the brain. They got everything under control and they were basically like, wait for the tests to run and we'll let you know what's going on. And one by one, all of the tests start coming back negative. They're like, all right, it's not the neurosarcritosis lung cancer thing that we thought it or that one was called like parasympathetic something. I don't remember that. Paraneoplastic syndrome. Great. Good job.
00:19:38
Speaker
But they were like, it's not perineoplastic syndrome. It's not autoimmune stuff. It's not an infection in his spine. And it's sort of weird to hope that it is that. But we were like, I remember being like, shit, what do you mean? it's What do you mean he doesn't have cancer in his lung? I thought he did. No, we were hoping for that. Because it was an answer. We were hoping for any answer because that unknown sucked so much. Right. But it's also ironic because I look back now on that time of unknown and I'm like, reminiscing on it too. Right.
00:20:04
Speaker
The reality sucks ass. Yeah, exactly. Like, I mean, we we were hoping it was lung cancer and thought it was to the point where like we're at this point, this is all happening in April, May, I my husband and I got married in June. And I'm like, Oh, yeah, I don't think we should have cigars at my wedding because like my dad might have lung cancer. Like this is this was a very prominent theory. So to find out that that wasn't it was sort of like, oh, shit. Okay, so what's going on? And then if we kept circling back like, fuck, could this be brain cancer?
00:20:34
Speaker
yeah but it didn't in the back of my mind at least in the back of i think all of our heads and our parents were thinking more and more like maybe this is worse than what we thought but i'm like telling my friends because they're like what is going on and like oh let's not bring cancer yeah we're like autoimmune something like we're hoping for this yeah he's going to all these appointments they're getting closer and closer to figuring it out we get through our wedding. It's, it's great. I mean, he's on the steroids. He's doing a great job. He officiated the wedding and also father of the bride did the shit out of our wedding. and He did such an amazing job. Like it was the best day of my life. an i kid and mine But also mine, right? Like we just, I mean, we had a ball. He was so great. And
00:21:16
Speaker
I'm like, he was going through sort of all these tests and I think right before the wedding, he had gotten news that it might be cancer in his brain, but he chose ah probably smartly not to share that with us. But did he didn't share with our mom. No, he didn't share with anybody. I just can't imagine the weight of holding that in the fear of holding that alone that he was carrying on such an important day where he was running the wedding. Oh, it's probably have the second most important job but other than you.
00:21:44
Speaker
It arguably the most important in job like it was the it was the most selfless thing to like breaks my heart. it break Me too to have kept that to himself and not said anything to any of us so we could sort of carry on with our like amazing weekend and not be thinking about that like it's when I think about like going on my honeymoon after my wedding and being on such a high meanwhile like dad and mom are slowly figuring out all of this stuff. I'm like that. I mean, I'm so happy that I got those moments. But I just feel crazy that he and mom and like that they were going through, arguably like one of the worst parts of this whole process. Well, I was like having alcohol spruces and stuff. But you but you also like had to do that. So it's post wedding. They're figuring everything out. And
00:22:30
Speaker
we sort of are, even without our mom or dad saying anything, we're sort of coming to the conclusion, like we're picking up a vibe that stuff looks, stuff's not looking good. it's not We're finally about to figure out what's going on. And they've eliminated basically all of the things that could be not terrible.
00:22:49
Speaker
And without like our parents calling us and being like, Hey, we're finding out tomorrow if dad has brain cancer or not. Like we knew that that was sort of, we could deduce that that's where we were in the process. He had had a brain biopsy right after the wedding and they were getting the results back of that in like the second or third week of July. I was home. Maybe I was being really naive, but I even was like, there's no way like that'd be crazy. So they went to this appointment and I was just like on a walk, like,
00:23:18
Speaker
Whatever, I wasn't even home when they came home because I didn't think anything. And then my text me and was like, where are you? We just got back. Hello. And I was like, fuck. You can just tell. And then they sat me, I was sitting down at the table and they told me, and that was probably the first time, it was just such a so denial, I feel like for a bit. Yeah. Like we were all crying, of course, but it felt fake. But it didn't feel, cause we also didn't know what this entailed really. And basically the way that it was phrased to us, and I mean, you were there in person, like dad called me, I knew that they had the meeting. I was tracking his location again.
00:23:50
Speaker
the whole time. like I saw him go to Mass General and like come back to the house and I was like, oh, he's at the house. like They must know what's going on. like I should call them and figure out their news he the The way the information was passed to us this week in July was he has cancer. There are a couple tumors in his brain. They're slow growing, but it's grade four and they're referring to it as glioblastoma which i didn't know what that was and i was like oh all right like i didn't know anything about brain cancer you look up glioblastoma and it's basically like all right if you from the onset of your diagnosis you have eight to twelve months to live like that's what you look it up and it's like oh worst and most deadly type of cancer i mean our dad has spent probably our entire lives trying to
00:24:38
Speaker
shelter us and make sure that we were okay. And even in this process, like he didn't he wasn't even really using the word cancer. He's like, Yeah, they found a couple of small tumors in my brain. Meanwhile, mom is like glioblastoma like screaming. She's putting glioblastoma on blast. Yeah, no, she's she's like updated her Instagram bio and it's like,
00:24:58
Speaker
loving mom, wife of ma'am with Leo. But anyway, it's so yeah, it's mid July and we find this out. And I think to wrap this all up,
00:25:09
Speaker
our family, the two of us, our sister Lucy, our mom and our dad, and everyone else who's close to us have been spending now the last six months since we found out this diagnosis, figuring out like what does this mean? what like How does this end for us? And how does this manifest itself in what time we do have left?
00:25:34
Speaker
We've gone through all of the different stages of just denial, anger. I think there are some days where I think we circle through it every, like just in that one day, we go through all of them. Oh, I circle through them in an hour sometimes. It's quite scary.
00:25:50
Speaker
But from the beginning, from the onset of the diagnosis, our dad said, we're going to fight this. We're going to fight this as hard as we can. Basically, we we found ourselves to be in a situation where you're being dealt one of the worst possible hands. Horrible hand. But with, I guess, a good situation in the in the sense of... We're lucky we live in Boston. right they think He can walk to his appointment. It's such an incredible medical system there.
00:26:16
Speaker
his team specifically at MGH is so fabulous. Yeah, everyone's been amazing. and But it's also at the end of the day, like, he gets glioblastoma and the odds of you can't slice that in a positive way. No, but there are positive aspects. Yes, there are silver linings to this situation. But Like the punchline is like, this is, this is terminal brain cancer. And I think there are many days where he doesn't fully understand that we don't fully understand that we don't want to think about it. We don't want to understand it. Do you want to talk about just the, his treatment and stuff so far so we can catch everyone up to where we are now. So.
00:26:56
Speaker
he started off treatment doing radiation and also chemotherapy simultaneously so that was the first step they went in pretty aggressively he handled it like a champ of course he's the toughest guy now and that was great got through radiation rang the bell and i were home for that which was really yeah he did not want to ring that bell and then from there they you don't really do radiation multiple times especially on the brain just because it's so toxic and it can really hurt the cells that are not cancers as well. You can't really target it that specifically. it' not It's high risk, high reward, but because it's so high risk, like he came out of the radiation and this first round of chemo, they MRI'd his brain and the tumors that they were targeting had shrunk. Like they had showed some regression in size and that they think was very much because of the radiation. More so the chemo. Right. And the brain's just so sensitive. It's like,
00:27:52
Speaker
his personality. Yeah, it's a super power. Like our dad is the funniest, smartest, like most witty. If we're, I mean, we think we're hilarious. If you think we're funny at all, it's all thanks to him. Honestly, like mom's gonna hate that. I don't care. It's true. But he's like his, we've said this forever. His brain is his super power. He's so creative, so thoughtful. So eloquent in and everything he does so the fact that his body decided to attack his brain is just sort of like it's ironic almost it's like I don't want to say poetic justice because that's not right but it's like it all circles back to rap it all circles back to rap it just adds to the what the fuck's going on of this entire situation so now done with radiation ring that bell he is still taking chemo and
00:28:43
Speaker
not currently but it's actually great because it's at home it's all oral chemo so he's actually able to do it in the like in our house and doesn't need to go in and sit and get an IV, takes it along with like a million other pills every day. um He is was on a schedule of taking it five times at a very high dose and then taking a break for like the remainder of the month sort of sort of once a month around that time. It's just tough because his type of DNA with the cancer is unmethylated, which I don't entirely know what that means. It's a genetic marker that in other like
00:29:15
Speaker
patients has shown to react less positively to chemotherapy. His tumors seem to be slow growing, which is abnormal for glioblastoma. It's usually quite aggressive. Yeah, right. But at the same time, it's like that could change on the flip of a hat or whatever that phrase is. So it's sort of I'm really bad at phrases. It's sort of like we're living in this weird world where we don't know how much time he has, we want to go for quality over quantity to some degree. like we want We just want to make the most of of whatever we have left. I mean, this is this is heavy. This is awful. There's no sugar coating what he's going through and what we're going through. I mean, this sucks.
00:29:57
Speaker
like front, back, up, down, diagonal. like It sucks everywhere. and It blows. It totally blows. and I think for us, we spend a lot of time with our family members, with our friends, but more than anyone with each other talking about just our feelings around this, going through memories that we've had with him, just talking about anything that I think will either help us understand and or make us feel a little bit better. yeah So that, just to sort of wrap it all up. That's what sort of brought us here. right We're like, why not put a mic in front of us? And I mean, ideally this will blow up spread awareness. People will find, take comfort in us being pretty vulnerable, I'd say, yeah in talking about how our feelings, our emotions, all of that. And hopefully it will help someone else, but worst case,
00:30:54
Speaker
It doesn't, it helps us. This is therapeutic for us, so. Yeah. So that's, if that's the only thing that comes out of this, like I'm okay with that. Yeah. If we need to sit in front of our computer with microphones and talk at each other to make ourselves feel better, like I'll do that with you all day long. Oh, that's what we're doing. That's great. In terms of how we want to roll this out, a lot of what we're, we're looking to do is just sort of have conversations that do kind of suck.
00:31:20
Speaker
Um, everything will relate back to our dad and our relationship with our dad and what we're going through with him as a family and as daughters and just sort of dissecting those relationships. But a lot of the other topics that we're planning on talking about will be, they'll just sort of run the gambit of everything from.
00:31:40
Speaker
relationship to alcohol, to birth order. One of us is hungover today. To birth order, to talking about like eating disorders, just talking about things that have touched us or people that we're close with in so many different ways. It's not hard for us to relate everything back to our dad because he's been such a prominent and amazing figure for our whole lives. I mean, we I feel like we have always been doing that.
00:32:05
Speaker
Yeah, all like see a door and be like, Oh, I love that. It's ridiculous. I'm more obsessed. No, but but again, like the point the point of this is for us to get our feelings out. And hopefully we can have productive discussions and helpful conversations and build a community for other people that are going through certainly a similar thing, but also just a hard time. Because I think there's so much to be said for struggling in general and not having an outlet or just not knowing that so many other people, whether it's the same struggle or drastically different struggle, are also having a really hard time. Say something that will end it better than what I just said. Good night.
00:32:50
Speaker
Oh.
00:32:52
Speaker
Goodnight, thank you for coming to the show. Dad's gonna kill us.