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S2E1: Sorry for the Wait
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Kicking off another season of Not Us with summer updates, stable scans (!), and more of your regular scheduled yapping. We took a hiatus, but realized we missed having these conversations with ourselves and sharing them with all of you. We’re happy to be back, and as always, appreciate the outpouring of support.
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Transcript
Summer Break and Podcasting Dilemmas
00:00:04
Speaker
We're back. After a long hiatus of not much. but did we do this summer? Yeah, so basically we took the summer off, but we're still here. We're back now. um Honestly, I don't really know what resulted in taking the summer off. I think partially it was logistics with us leaving the equipment at home the city in everywhere that we weren't.
00:00:32
Speaker
but We were both traveling alone. I didn't see you much this summer. No. I was home most of the time, so I could have podcast with mom and dad, but I won't do it again. Yeah, definitely not because you were being lazy, for sure. um No, I think we were on different schedules. We were, there was a lot going on. I think we had a lot of ups and downs over the summer that I don't even know that we were, like, necessarily comfortable
Family Visits and Humorous Anecdotes
00:00:55
Speaker
talking about.
00:00:55
Speaker
um but But then I think we went through a whole phase of we were, like, do we keep doing this? Is this getting old? Is this getting boring? And and then we decided, oh, me and but fuck it, whatever. yeah The answer was yeah, but we don't care.
00:01:13
Speaker
oh So yeah, I guess we could do a little summer recap that doesn't involve singing Grease because we did just waste 10 minutes doing that. Yeah, I mean, the summer feels like a while ago, honestly, but it was good. i was off. I didn't have much to do,
00:01:28
Speaker
so I honestly probably should have been podcasting, but I was spending a lot of time at home with mom and dad in Boston. So that was really nice for me. got to have like a lot of quality time with them, a lot of relaxation, lot of recharging.
00:01:42
Speaker
Yeah. Grateful for that. yeah, I think we spent of being in school, having summers. Yeah. You spent a lot more time with them this summer than I did. We still spent a good amount of time. Um, We did also wake up this morning to a conversation of our parents sitting us down and saying, please don't come to Boston as much as you have
Health Updates and Emotional Rollercoasters
00:02:02
Speaker
been. We love that you guys are here, but, like, like don't go like come back.
00:02:07
Speaker
So. I need to, like, elaborate. Like, it wasn't. I mean, I actually don't really know if it was supposed to be rude or not. But boy um and they were like, live your life. Like, that's yes.
00:02:19
Speaker
But. Yeah. i think. It's been coming a lot. Well, yeah, I think a big topic of conversation amongst many has been, like, what is the breakdown of, like like, we want to be here. We want to be in Boston. We also don't want to put our lives on pause.
00:02:33
Speaker
They don't want us to put our lives on pause. I think our dad thinks we come here because we feel like we have to, when in reality, like, most of the time we just want to be spending time with him. I'm sure, like, post-diagnosis our quantity of time has – or, sorry – Yeah, quantity has increased a bit. Totally, but I think it's – I mean, it's selfish. Much more. No. we've always been wanting to come and stuff.
00:02:57
Speaker
It's selfishly motivated because we want to be here and spending time with him because we don't know how much time we're going to have. But it's also, like, we enjoy being here. i think when we're up here, dad's always like, oh, I'm, like, so sorry that I'm being boring. I'm so sorry that I'm low energy. And I'm like, oh, it's actually all I want to do when I'm up here is, like, sit on the couch and hang out and not feel like we have to do anything.
00:03:19
Speaker
Yeah. So that's a thing. um i don't know. What else did we do this summer? had a lot of like weddings and stuff. I feel like you were very go-go-go. like we had opposites of like I was very sedentary at home and you were very go-go-go.
00:03:35
Speaker
But in some ways I felt like, I don't know if this is true, but I like had less motivation to do things like this and to honestly do quite literally anything.
Navigating Terminal Illness Complexities
00:03:44
Speaker
Maybe it's because I was like not that happy this summer, but I think I was happy. I think it was more just like,
00:03:49
Speaker
You know, when you don't have a routine as much, how it's, like, harder to motivate to do things? Yeah, I think we both felt that. Like, I felt like I didn't have time, and you felt like you didn't have motivation. Yeah. Or both.
00:03:59
Speaker
But anyway, it doesn't matter. We definitely time, but whatever. We also, I don't know. We're back, so whatever. Yeah, who cares? We're back. Don't worry. You just missed the time period where we had remotely a little bit of a tan, so.
00:04:12
Speaker
One of us had a tan. I did. I'm translucent now, as usual. Yeah, well. You're fine. Well, I guess we could do a little update on, like, dad.
00:04:23
Speaker
Yeah, so I guess our last one was in June. it was right before, right before or right after back surgery. After. Okay, so our dad had back surgery separate from what's going on in his brain. More of like a sciatica.
00:04:38
Speaker
Yeah, it was sciatic. He had, um, canal. the fuck? Mom kept saying canal. What was it? It was canal stenosis. The hell?
00:04:49
Speaker
It doesn't matter. Basically, it was like a bunch of like tissue. He needed he needed to clean up. Yeah. A bunch of crap his back. Yeah, there's crap in his back. No, but it was separate from brain cancer. And I think for a minute, we weren't sure if it was separate. And that was a big, that was a hard time for us. I think there's been a lot of, okay, things are good and stable. Great. And then we'll have these dips where it's like something's going on and we just don't.
00:05:13
Speaker
It's like any, like you get a hangnail now. like, okay, we don't know. if that's because of this or it's something else. So it's, we're, we're still, you know, in that phase of living on edge and trying to figure out like, sure what is the cause of this? What's going on? So anyway, we had the back, he, we, he had the back surgery and went well it went really well.
00:05:33
Speaker
He's walking great. Um, and he hadn't been before. So that's been awesome. I think it's just giving him more mobility and the ability to do other things that he really was super limited and now he can do a lot of stuff.
00:05:46
Speaker
So I think that was great because there were a moments for me and I think for us where it was like, it felt like we were getting glimpses into like what this was going to inevitably be and it felt like it was sooner than, than like it should have been. I don't know. It was just a whole weird mind fucky type thing.
00:06:05
Speaker
But anyway, so that went really well. um And then, We, around the 4th of July, we had sort of another blip where there was just, like, some stuff going on, and we weren't sure if it was seizures or if we just weren't sure exactly what was happening. um a lot of doctor's appointments, figuring stuff out.
00:06:29
Speaker
It turns out lot of, like, uncertainty and anxiety around it. Yeah. It's just every time something out of the ordinary happens, you're sort of, like, okay, is this a turning point? And I think just going through the motions of like, just not knowing.
00:06:45
Speaker
This whole process has been really difficult because of the not knowing. um So I think we're all working on like managing our reactions to good news, bad news, medium news, managing our anxieties around stuff like that. But yeah, I would say like in transparency, that was a big portion of our summer was like are we making progress? Are we staying stable? We just don't know.
00:07:10
Speaker
um So to not dwell too much on that era, we did just get dad had a scan this past week and it remains
Advocacy and Fundraising Efforts
00:07:19
Speaker
stable, which we're really happy about. I think, yeah, we're very happy about that.
00:07:24
Speaker
Little wins are everything right now. And I think we also, our parents and our family have been making a lot of connections and building relationships with foundations that are really helping advocate for us so we've been beyond some of the end of life stuff that our mom was doing down in dc it's more like we're like national brain tumors yeah do you want to talk about that a little um well i just wanted to say one thing before that just like it's interesting too for me it's like we receive quote-unquote good news isn and i have struggled with like
00:08:00
Speaker
good news but like what does that really mean like it's not really it's good news wrapped in a bad situation so i think that's like an interesting thing yeah but which i know we've spoken about but i just don't know hit my mind um but yeah we've definitely lot spearheaded by our mom of course miss advocate um created a really nice relationship national brain tumor society There's actually a fundraiser walk, not run, so that's more enticing for a lot of people. Thank God. You included it in myself.
00:08:31
Speaker
In mid-October, that will be going to on, like, a Sunday. I think it's October 19th, just, like, on a beach in Boston. Not really sure what that means, but we'll find out then. um And that will be really exciting just to sort of, like, bring more people together, raise money, and just, like, again, raise awareness for a great,
00:08:49
Speaker
organization I think something that I want to highlight just with National Brain Tumor Society that's been really helpful for us and I think for other people as well is their emphasis on patient advocacy ah so it's like really taking a role of how like ah guess like equipping providing patients and their caregivers and their loved ones with questions to ask and things to inquire about in their doctor's office when it's really daunting or scary and like there's a lot of terms being thrown around like I have no idea what these mean a lot of medical things
Balancing Hope and Medical Realities
00:09:23
Speaker
but really like giving patients and um or whoever might do with them their loved ones really the skills and confidence to advocate for themselves and speak up and be like what does this mean what can we do and get a better understanding of the treatment for headache and everything yeah um
00:09:39
Speaker
which I think is very important in any medical situation, but especially with something cancer-related that is, like, a lot of terms being thrown around and a lot of unknown, and sometimes there's that barrier between a clinician or a medical professional and patient, and sort of, and BTS really works on the patient side advocating for that, which think is super important.
00:10:03
Speaker
Yeah, and I think, I mean, it's all, like, Our dad's team at MGH has been absolutely amazing. They are great. They've been talking through National Brain Tumor Society to people also at like Dana-Farber and stuff. And none of that is like, oh, we're looking to move around or whatever. It's just all about like, I think when you're dealing with a terminal illness that does not currently have a cure, it's sort of like we're every day just racing to buy more time while all of these doctors collectively are just trying to figure out what works, what doesn't. So they're all doing different stuff. So it's like, they're all working together, but it's also great to have one unified group, which is MBTS, who's talking to our team at MGH, also talking to the team at Dana-Farber, also talking to like programs in Germany that have come out with these new vaccines and stuff. And it's all, I think it's difficult for us, at least on the other side, to sort of balance like hopefulness versus reality because we've,
00:11:02
Speaker
We don't know what... There's just so much unknown between doctors, trials, treatments, and, like... And, like, access to them, too.
00:11:12
Speaker
Yeah. So many trials are, like, very specific requirements, which they have to do to maintain results for it and everything, but, like... There's so much that goes into it, and I think, like, it's so exciting. Yeah.
00:11:25
Speaker
It's so exciting to see, like, new articles come out that like, oh, they think that they're making progress on this vaccine at this place and so-and-so, but it's, like, we are excited about that because it's helping the community and helping other people that have this or are going to have this. We don't know that it's going to specifically help us in our situation.
Coping Strategies and Emotional Toll
00:11:41
Speaker
So it's balancing like expectations, balancing hopefulness. And I think it's all very difficult, which we've talked about, but I think like, I don't know. I think you feel like time and getting used to a situation or as used to it as you can would make things easier. But I don't think that's necessarily been the experience.
00:12:00
Speaker
Like I think as we, As we talk to our doctors, as we go through more conversations, like in some ways it's been more stressful. I don't even really know how to articulate that.
00:12:11
Speaker
i agree, I think. But I don't know why. it's just like the unknown, in my opinion at least. And yes, there's like another option and ah more things out there, but it's like don't know.
00:12:23
Speaker
Yeah. So it's just creating a larger realm of like unknown and variable things for everything. I don't know. Yeah. No, it's not. And it's like adjusting to this new normal.
00:12:34
Speaker
Yeah. I think we're very wary of that. But it's like adjusting to a new normal. It's like it's not like, oh, we're moving. We are moving into a new town, into a new house. and like, all of a sudden it will just start to feel more and more regular. And then it will just become your new life. Like, that's not what this feels like. I think it still feels weird. It still feels strange. And because it's ever-changing, it's not like, okay, our – dad now like can't walk we're getting used to life with him not being able to walk like first of all that's not he can walk right now so that's a weird analogy but like it's more so like it's not just okay this is a new phase a new normal because that phase is constantly changing we're getting more information we're we don't we just don't know what is going to happen today tomorrow the next day so living in that it's almost more like we need to adapt to living out of control and I think that's really hard that's that's very hard but that's really true
00:13:26
Speaker
Maybe it is good that we're doing this again. it's a Now I'm like getting introspective. Yeah, no, I think I think i needed it personally. That's actually a good segue because I was going to say, obviously, we're just giving updates about our dad, which is probably the book of what people are interested in. But I guess we're a part of it too. So I wanted to say, how are you?
00:13:42
Speaker
Loaded question. I feel like I sort of just answered that. Like, not good. But I think being honest about that is also... become really important. And I think that's something else that we're learning to deal with and cope with all the time is like, people are like, how stuff going is so easy to just be like, it's fine. It's good. Cause like, yeah, the scan's stable, but that doesn't mean that like we are stable. It's also easier to say that because it's like, when someone says, how are you?
00:14:05
Speaker
Like, you're not going to be like, well, actually, like, it's just easier to sort of. I don't think that's the answer they want anyway. No. Um, sometimes it's just a box to check. Yeah. But no, I mean, I think like,
00:14:17
Speaker
I don't, it's week by week. I think you and I are still in that cycle of like, i' have a really bad week, then you have a really bad week. And we don't usually cross over. But I think it's, it's almost harder when we're getting stable scans and things aren't getting better, but they're not getting worse to be like, okay, why am I still so like feeling so out of control and like up and down and not good?
00:14:38
Speaker
That's fair. And I don't know the answer to that, but it
Finding Stability in Routine vs. Emotional Struggles
00:14:42
Speaker
is, i think it's just the reality. And I, and I feel like there's a part of me And maybe you too, that's like, I don't, I'm not like, all right, I feel like I'm feeling this way. And instead of trying to figure out why I'm feeling this way, i would just want to more figure out like, how can i use tools to feel a little bit better? Well, I think that's really important that you're feeling that way.
00:15:05
Speaker
I think that's like a positive thing. That I'm feeling like what? Like crap? No, that you don't, you're not getting caught up on why. let me rephrase. I am trying not to get caught up on why. Oh, that's good. But i was that it is difficult. Yes. um like what Do you resonate with that? like what do you How are you feeling?
00:15:23
Speaker
I feel like you are seemingly like... I've been feeling better recently. Yeah. Well, I think that's great. But I also think it's like, okay, roll with that. I know. But then I have that weird thing where i like have been really happy recently. and Yeah. And you're like, oh, I'm terrible. Yeah.
00:15:36
Speaker
yeah Yeah. Which is really weird. Yeah. um I think I'm in a routine right now. I... was very variable this summer, like I was saying, but I moved. Like X or variable. I'm really happy in my new place. I'm really happy with like my people around me. I'm like doing well.
00:15:52
Speaker
I have a routine again. I'm back in school. I'm back in like my internship. I'm still working in my job. Like I'm very busy. And I think that that is helpful. Busy is helpful, but I'm also learning that like busy is avoidance.
00:16:03
Speaker
But you also are like more busy than I am. Well, know. And I'm trying really hard to like not be, but I don't like to just sit and nothing. Like that to me is like awful. I have been in flow, but I have been, I have been doing well, which then I have that weird guilt for, which I need to not have, but it's obviously like easier said than done.
00:16:22
Speaker
Yeah.
Adapting to the New Normal
00:16:23
Speaker
Weird one. It's weird. Um, but yeah, I don't know. i think I'm sure like, I'm, I always feel like the looming whenever I'm like doing well that I'm like,
00:16:34
Speaker
Oh, like I'm due for like a good cry. Like I had, yeah i actually, here's how I've been operating. i ha I have been like not functioning that well and like I feel physically fine, but like I've been functioning that well where like I'm making really dumb mistakes. Like I'm forgetting things. I'm spilling, I keep spilling on myself. Like I've spilled so much. Well, yeah, you're wearing my sweater and there's food all over it.
00:16:54
Speaker
yeah But like, I don't know, I've been like missing the subway stops. Like genuinely disgusting. I've been doing just like, for lack of a better word, dumb crap. And dad's gonna hate that. dumb crap dumb crap could have been worse i know and like something that really set me over the edge was i went grocery shopping you know all about this because you like called me because you thought i was like losing my mind and i went to buy chickpeas and i bought freaking pinto beans and i do not like pinto beans at all like at all and my whole like meal prep salad was supposed to be this nice ball salad
00:17:26
Speaker
the center being chickpeas. And then I had fricking pinto beans and I wanted to lose my mind. And I like was texting you, my friends, like I was texting everyone. I was like, no, like I, like I was like tearing up.
00:17:39
Speaker
But that, but I think that's a classic case of like, it's not about the pinto beans. Exactly. that I feel like im top James Kennedy. It's not about the pasta. Vanderpump Rules. You didn't watch that far, which is criminal. I know James though. He's the British one.
00:17:51
Speaker
Yeah. So he does this whole bit where he's like, it's not about the pasta. And it's like about like, Actually, I think there was a whole thing where, like, the pasta was actually supposed to be, like, code for drugs. But it was, it was like, ah it was a deeper problem. It wasn't about... It's, like, that was the straw. Like, you are the camel. Yeah, you are the camel. The pinto bean was the straw. Yes.
00:18:08
Speaker
like why And this is your back. I'm doing well, but then, like, sometimes I'll have, like, a bad day and it, like, all implodes. But that's also how I think I operate in general, which is totally not that healthy, but, like, blast.
00:18:18
Speaker
Yeah, but I think it's not... It's, like... It works. Being like, okay, this is how I operate and, like, here's how I'm going to make sure that I have tools to not fix it but, like, make it a better experience. Make the pinto bean breakdown a little less creepy.
00:18:30
Speaker
Well, right, because I, like, I was on the phone with you and I was like listen, like, I can go puff, like, Uber Eats you have a can of chickpeas if that's what you want. But that wasn't what you want. You don't really want chickpeas. You just want to, like, not feel insane, which – And I just wanted to, like, be annoyed at something that was, like, tangible rather than, like, the universe.
00:18:47
Speaker
Yeah, totally. Like, sometimes that's easier to be, like, ugh, at a can. I feel like the guy from, um... Wet Hot American Summer. Wet Hot American Summer. With the beans. But, yeah, no, I don't know. I think that I'm happy to be home. I am also happy that, like, I know I'm going to be home in a couple weeks, so, like, that's going well for me.
00:19:05
Speaker
Yeah, having that sort of breakdown is good. I think, like, our producer, sister, editor, is, um... why this? don't know. That like reminded me Lucy. Oh. She's moving officially to the East Coast and I think like that just getting, there's like little things to be looking forward to. Like, okay, we're all going to be together more, which is great.
00:19:24
Speaker
We know when we're all seeing each other next, which is great. We don't always know that. So no we're thinking about, okay, it's hard to make plans because we just never know what's going to go on. But like, okay, can we make a plan around Thanksgiving?
00:19:35
Speaker
What are we going to do for like this week? don't know. And that I think is helpful. I think it's helpful to feel like we have some sort of control over the future, even if it might be stuff that we don't inevitably end up doing.
00:19:46
Speaker
So
Future Podcast Plans and Challenges
00:19:47
Speaker
yeah, that's really good point. Here's the deal. We just said, it's good to have schedule. It's good to have this. It's good to have that. I think from here on out one, we're going to start talking to more people live on the pod because I think it's interesting to get different perspective. And I feel like, you know, like we're pretty redundant.
00:20:04
Speaker
I'm pretty sick of hearing in his talk, even though we haven't even done this in a while. Um, I think we're going to try to do like once a week, short episodes. I think just more frequent little updates. So it doesn't feel like we have to dive into all of the things of the past when we are talking. and um And I say all of that with the caveat of like, we probably won't stick to any schedule, but I think we'll try to, and that's good.
00:20:25
Speaker
Right.
00:20:27
Speaker
all right. Bring in the dancing lobsters. Dad, want to come?