Transcript
You’re listening to In Sickness, a podcast about caregiving, with Allison Breininger and Justin Bajema.
Allison: Hey, friend, good morning.
Justin: Good morning.
Allison: How are you over there?
Justin: Doing okay. We had another kind of rainy week after, we actually got some snow over the weekend, nothing like I think you’re experiencing. But today-
Allison: My Minnesotan, when I hear other people in the country talk about their snow, I’m always like, cool, yeah, nice.
Justin: But it’s sunny today, and so that’s always in February, kind of a mood booster.
Allison: Totally.
Justin: Appreciating that. And so this week has been a little bit interesting. We had an appointment with her doctor last week, I think.
Justin: And at the end of the appointment, she just brought up on her own that she had another patient with ME, and that patient had brought a study to her about a drug that there was a study on for ME. I think it just was done last year. And the results were fairly promising.
Justin: I mean, it was a small study, but so her doctor had prescribed it for that patient, and it seemed to be providing some benefit.
Allison: Oh, wow.
Justin: So she was like, is this something you’re interested in trying? And Sarah was like, yes, absolutely. So she started that this week, and it felt really good to have her doctor sort of doing research on what she has, and to have a doctor bring a treatment thing to us, it feels like for so long we have found things and approached her doctors like, hey, this is something we think we’d like to try. And so for her to be proactive in that sense, yeah, that felt really good.
Allison: That’s huge, because we’ve talked so much about that, about you feeling like, or caregivers feeling like, we need to be the researchers, we need to be like looking, is there the thing, is there the next thing that can happen? And so to know that like, that’s not just on your shoulders, that somebody else saw something, thought of you and is suggesting it, that’s huge.
Justin: And that she is, has another patient that she’s treating with ME.
Allison: Right, right.
Justin: Yeah, it just, it feels good to have, it feels like we have a stronger advocate in her like team of doctors.
Allison: That’s huge. Can you remind listeners what ME is?
Justin: ME is myalgic encephalomyelitis. It’s also, has been known as chronic fatigue syndrome. So a lot of times you’ll see it called ME slash CFS, chronic fatigue syndrome hasn’t, people don’t necessarily haven’t taken chronic fatigue as a thing as seriously.
Justin: So there’s, by having a more, identifying it more with what it is versus that, there’s hope that it will be taken a little more seriously. But it is not uncommon, and it is woefully underfunded and under researched.
Allison: Yeah. And you’ve said in the past that you’re hoping that, or it sounds like some of these COVID long haulers that they’re sort of showing up with ME, right? And so that hopefully more funding and research will go into it because there’s gonna be more people with it, right?
Justin: Right, and that is happening a little bit. There’s some new studies that are being funded. So yeah, it’ll be interesting to see kind of, it’s an interesting time, I think.
Allison: Yeah.
Justin: Both for us and for the larger community.
Allison: I mean, certainly we never wish that on anyone.
Justin: Right.
Allison: And we know that when you’re in the rare disease community, the more sort of numbers that you have, you know, the better chance you have at fundraising and advocacy and cures and all of those things. Oh, that’s exciting. Has she started again?
Justin: Yeah, she started it on Monday. So it’s too early to see what it’s gonna be doing, but yeah, we’ll see.
Allison: Oh, I’m happy for you.
Justin: Thank you.
Allison: Because I know you’ve talked a lot about that and about how like there just isn’t sort of like, this is our reality.
Justin: Right, feeling stuck with where we’re at and just kind of treading water.
Allison: Yeah, oh, that’s good news. Good news in the middle of a pandemic in February and that’s what we need.
Justin: Yeah.
Allison: We need more of that.
Justin: What about you? How are things going over there?
Allison: Well, friend, it’s been a week. And I know I’ve said that before, but this time I mean it. We, so a couple weeks ago, Sean had, he had surgery to remove a spot on his gums.
Allison: And so just as a reminder, so for people who have fanconi anemia, are at like 1000% higher risk of getting head and neck cancer than the rest of us. And so, you know, most of his cancer has been in that area. And so he has watched very closely.
Allison: So we have this one amazing oral surgeon who in non-COVID times, we see in person about once a month. During this time, she has said, okay, every month, I want you to send pictures of your mouth and send them to me, and then we’ll decide if you should come in. So it was in taking pictures of his own mouth that he saw a little tiny spot on his gums, sent them to her.
Allison: She said, yep, I think you should come in. So we went in a few weeks ago, and she biopsied it in the office, sent it off, and it came back as pre-cancer. But with him, like his cancers grow really quickly.
Allison: And so she said, you know what, we just gotta get it out of there. Even though other doctors on his team were like, you know what, it’s probably fine, it’s not a big deal. But that’s just not the way we roll with him.
Allison: So she took him to the operating room last week, we can have a go now, and removed a section of his gums. So it’s in front of a tooth that’s maybe like three from the back. So removed a section there, and then there was also a little spot on the backside of that same tooth that she removed.
Allison: And so we were sort of like, okay, that was unpleasant and painful, but moving on. Dodged a bullet. And so one night this last week, I get all of his MyChart alerts.
Allison: So he was already asleep, and we got this MyChart alert that said, you have a new test result. And I was like, what? I don’t think we’re waiting for a test result.
Allison: What would this be? So I opened it, and it was the pathology report that said that of the two samples they took, one from the front, one from the back, that they both showed squamous cell carcinoma, which is cancer, in situ, which means that his like invaded, and both of them, they did not have clean margins, which means they didn’t get all of it. So I’m sitting there, so he’s asleep, and I’m reading this.
Allison: Unfortunately, I guess a lot of those are words that I am familiar with after all these years. But reading this report and trying to figure out like, wait, what? What is the saying?
Justin: Right, just getting it as just a message, you’re not, there’s no one there to-
Allison: There’s no human. Especially because usually the pathology report is like, yep, got it all. And this doctor is particularly cautious.
Allison: And so I think took a bigger field than most people would have. So for sure, we just thought I would say like, if there was any in the sample she got, we were expecting it to be dysplasia, which is what the other sample had been. And that it was, it had clean margins.
Allison: So none of this was expected. And then there are words like concern for invasion. You know, so I’m sitting there late at night alone reading this.
Allison: And then it’s like, do I wake him up to tell him this news? Like I’m now the person who’s going to tell him this. So I did not. I let him continue sleeping. And then in the morning was like, okay, so this MyChart thing came through. So then there we both sat without a doctor, you know, reading this message.
Allison: Fortunately, that same surgeon is amazing. So then she called us first thing. It was like 7 a.m. And just said, yep, I saw it. You know, we’re gonna dig in more to what’s going on. We’re gonna have to do more surgery. We’re gonna have to take that tooth. I’m gonna coordinate with your other surgeons, all of that. So I don’t even know what day that was anymore.
Allison: Some day this week, because it’s kind of all been a blur since then. The last number of days, we’ve just been in this terrible moment between diagnosis and plan. So I’m really good in emergencies. I’m really good when there’s a plan. I’m really good when it’s like, okay, here we go, when there’s a thing to do. But this is very much a moment of we don’t know.
Justin: Yeah, it’s just waiting.
Allison: It’s just waiting. And I have, in the past, played the game of what’s the worst thing they could say? Like I remember with his bladder, when he had bladder cancer, I was like, what’s the worst possible thing they’re gonna say?
Allison: I don’t know, do a surgery, do this, do whatever. We’ve been through so much. And then we went to that appointment and they said, we’re gonna remove his bladder.
Allison: And I was like, what the, like, what? Like that is, I would not have. So a number of times that game has not gone well for me because they have come up with something that I would not have expected.
Allison: And so I think, I don’t know, I hate to even speculate, but it sounds like the surgery will happen. They’ll remove the tooth. They’ll remove more pieces of the gums.
Allison: Hopefully it won’t need major reconstruction. Nobody has talked about, mentioned anything yet about like doing radiation or anything like that. But again, we haven’t had like a full plan put in place yet. So that’s how my week was.
Justin: Yeah, that’s to go from expecting it to be like, you thought you knew how things were gonna come back. And then all of a sudden you get that report and you’re the only one holding that. That’s a big swing.
Justin: And then just to be in that spot where you don’t know what’s going to happen. And I’m sure your mind is racing and anxiety and all of that is just to try to keep that somehow in control. And I’m sure also just like emotionally exhausted too.
Justin: Like just completely, yeah.
Allison: Because there are times, like we’ve talked before about scan-xiety, I have the right, there are times and this happened like a month ago, he had a whole bunch of scans, and a whole bunch of scopes, you know? And so there are times when it’s like you think, like you’re like, okay, there’s a scan, we’re gonna get the results, then we’ll know if there’s a thing, right? And not that that makes it easier, but at least there’s sort of like a pattern, like a way to know like this is a thing.
Justin: It’s sort of a like process that you’ve been through and you know that kind of flows sort of.
Allison: Yeah, like you know when to expect the bad news.
Justin: Yeah.
Allison: And then you get on the other side of that, and you’re like, okay, good, here we are, we’re in the clear. So for this to be like, what? Like this wasn’t even on our radar.
Allison: We weren’t even like really thinking about this path report coming back. Yeah, so I think that’s part of it is like that it was super unexpected. You know, also built into those, like when you get scan results, you’re sitting there in a room or like these days on a video call with a practitioner who says, here’s what this means.
Justin: Yeah.
Allison: Here’s what we think, here’s what’s gonna happen. And so to get it through MyChart and then to get a phone call from a surgeon who like very sweetly called in the early morning, but as she’s walking into the OR, and you know what I mean? Like we haven’t yet had sort of like a conversation with somebody about like, what the heck? Like, what happened? What is this? Like, why was the first thing pre-cancer and then the next thing cancer? Like, what happened here? Like, what are we gonna do about this? So I think that also feels unsettling. We’re in a little bit of like a purgatory moment.
Justin: We’ve had experiences where Sarah’s had some MRIs done earlier on with her headache and doing some screening for some other stuff. She was getting some MRIs, and I think every couple of years, she kind of will be doing that. But I think it was one night at like 2 a.m. the result came back, and she was awake and I was sleeping, and there was something in there. I don’t remember exactly what it was, but you don’t understand the medical language quite well enough to know exactly what it’s saying, but it doesn’t sound good.
Allison: Right.
Justin: And so then she woke me up, and we kind of like looked at that, and we’re like, okay, what does that mean? And then you just kind of have to, I mean, one, you can try Googling it, and that can take you way down a rabbit hole that you don’t necessarily want to go down. And otherwise, you just, yeah, you’re in that uncertainty waiting for, and I think we, it was, she had a follow-up appointment, maybe.
Justin: So I mean, it was a few days or weeks, maybe even that we just kind of had to wonder. And we, yeah, it’s just a, it’s not a great place to be. I mean, it’s a bad place to be. We don’t have to sugarcoat that. It’s rough and it’s hard, and I’m sorry, that’s where you are right now.
Allison: Thank you. It’s struck me over the years as so frustrating that like, because I have degrees and other things that are not medical, that therefore I can’t translate these things. Do you know what I mean?
Allison: It’s like, we have to wait for a pathologist. We have to wait for a surgeon. We have to wait for a radiologist to tell us what’s happening with our person and to translate these words and these pictures and this spot and this whatever.
Allison: And so hard to not, even though I feel like I have an honorary medical degree, I can’t translate those things. And that feels really, really hard.
Justin: You have all of the information in front of you, but you don’t know what that, it’s like it’s in another language. You just, yeah.
Allison: Yeah, absolutely, absolutely. And to know that there’s teams of people, which is reassuring, I suppose, but teams of people who are having conversations about him, and about like, what should we do, and what about this? But without us, and certainly our teams are amazing, and they bring us in and all of that.
Allison: But to sit here and not know what’s happening over there, what decisions are they making? What are they thinking? Because we haven’t been brought in yet, feels really hard.
Justin: Yeah. So what are you doing to kind of try to stay sane through this week, or is it just, you don’t?
Allison: Yeah. I think it’s sort of like letting go of any shoulds, right? Like we had planned our grocery or our meals for the week, and all the things that were on the list were like really healthy, and had kale and a lot of vegetables.
Allison: And I was like, this is not what I need right now. And so one night I was like, that kale might die in the fridge, that might happen. But I think I need to order us some cheeseburgers and some onion rings.
Allison: And that’s maybe what needs to happen tonight. And we have like the most amazing, and I know that we are rare in that, and not everybody has this, but we have a really amazing community of people. And so our house is currently exploding with baked goods.
Justin: Oh wow.
Allison: And at dinner time last night, a neighbor dropped off a bag of warm brownies and cookie dough bits and strawberries and ice cream and whipped cream. And so we said, you know what? We are having brownie sundaes for dinner.
Allison: Like that’s what’s gonna happen tonight. And so I think things like that, like you know what, whatever, like we should do this, we shouldn’t, nope, not this week. It’s all right, it’s all right if that doesn’t happen this week. It’s okay if we don’t answer that thing or do this thing or eat that thing. Like it’s just like getting through.
Justin: Yeah, for sure.
Allison: And if that means going to bed so, so early or whatever, you know what I mean? So I think that’s part of it. I have noticed that it just was really hard to concentrate this week at work.
Justin: Yeah, I can imagine.
Allison: You know, and I typically am able to like compartmentalize and just like push on through and just like function at a really high level, even when crazy things are going on. And I found myself like trying to plan things where I was just like staring out the window and I was like, oh man, so everything took longer and you know, because I think a part of it that is helpful and also a whole extra layer is that once this news sort of got out into the world, into our incredible community, then also like the messages come pouring in, which again, we are rare in that. I recognize that we are very grateful for that, which feels so good. And also, and I also got rid of the should of like, I’m not gonna respond to all these messages. I’m not gonna, maybe I’m not gonna respond to any of them. That’s okay.
Allison: But I think that’s also a thing is like, I am a caregiver at heart. And so then I am also like, oh, now all these other people are sad, you know?
Justin: Right, but that’s also, that’s not on you that they’re sad. Like, you know what I mean?
Allison: Right.
Justin: Like you can’t.
Allison: Yep.
Justin: Yeah, I don’t know exactly how to put it from there, but that’s, you’ve got your own thing that you’re carrying and like.
Allison: Yes.
Justin: Yeah.
Allison: Right.
Justin: But I get that you feel that kind of that dynamic.
Allison: Yeah, right. Or there’d be moments where I would like forget about it for a second and be having a fine moment. And then a text would come in that would be like my heart is so heavy for you.
Allison: Which I’m not making fun of that phrase because I mean, thank you, right? And it’s like, oh yeah, oh yeah, you’re right. Your heart’s heavy because my life is terrible.
Allison: Right, so like those moments like that where there was this sort of constant, like even little escapes, you know. And so certainly I’m not saying to anyone that they shouldn’t reach out because we love every single one. But I think that it’s just sort of like when you have a million messages of people who are also like, wow, this is really hard. It’s like, oh yeah, this is really hard. You know, yeah, so I think we’ve just sort of been limping along this week.
Justin: Has it felt different? I mean, we’re almost a year into this pandemic. And so, one, like I imagine like me, you’re just, every part of you is just exhausted and worn down from all of that. But also like the way people are able to support or reach out, is that different?
Allison: Yeah, good question. Yeah, like we have this amazing friend who is bringing us dinner tonight. And he said, when I come over, think about if there’s anything outside, I can do for you. Can I take out the garbage? Can I do anything in your yard? Can I shovel?
Allison: Do you know what I mean? Because yeah, we’re not letting anyone in the house. It’s nice that at this point, early on, we were a little nervous about even bringing food in, and we are certainly past that point. So that feels good now that we know that that’s not really a concern. So lots of food is going in. But yeah, I mean, like when people are, like when I get stressed, like I look around and things that are messy or unorganized like makes me feel worse, right?
Allison: So I would love it if I could be like, someone come clean my house. But we can’t, you know?
Justin: Yeah, I even think about like, you can only like hug the people in your house.
Allison: Yeah.
Justin: You can’t just get a hug from somebody who-
Allison: It’s true.
Justin: Yeah.
Allison: It’s true. I mean, and that like, I can’t even hardly think about it because it makes me so sad, but like I haven’t hugged my mom, you know? Like my mom who I see through a glass door, right?
Allison: And see on the video all the time. But like, yeah, I mean, I’m glad that I’m in a house with people because at least I get two options, one of whom like sometimes lets me hug her if I’m being real nice, you know? But that, yeah, I mean, at least I have two people I can hug, but that’s a thing, right?
Allison: Is that like even the friend who dropped off the brownies last night, like she dropped them off through a glass door and is like waving through a glass door, you know what I mean? And so it’s just like, even that piece feels, it feels hard, right? That there’s not those same kinds of supports that can happen.
Allison: I think in some ways, like when things are really hard, I tend to sort of hibernate a little bit, you know? And so in some ways, it’s kind of nice because like we’re expected to hibernate right now anyway.
Justin: Right, and you’re not, you don’t have to, like sometimes it feels like when people show up to drop something off or they’re showing support in different ways, you have to kind of, you have to spend energy on that interaction. And that’s not like, don’t not do something for someone because of that.
Allison: Right.
Justin: But it is, you know, if you’ve got half a dozen people dropping off baked goods, you know, on a day, and you have to like, all of that conversation, you just don’t have the energy for that.
Allison: Right. Way back in the day during transplant, we had, and that was at our old house, but we set up a system where we had like this little mud room and we had a cooler in the mud room and the back door was unlocked and we had instructions so that people could like walk in the back door, put food in the cooler, and then there was another door so that we would never saw them.
Justin: Right.
Allison: And then we even had this cute little sign that would be like, food’s here. That they would like slip up through the door into the kitchen.
Justin: That’s like the meal equivalent of putting like, no need to respond at the end of your message.
Allison: Yeah, it’s true.
Allison: It’s true, yeah. And sometimes people do that, like they, you know, even now, like the other day, oh my gosh, a friend, a neighbor of ours, on the day of the diagnosis, she lives really close, so she was able to do this quickly. But Sean’s like, there’s a bag of Lay’s potato chips in our front door.
Allison: And I was like, that’s so amazing. No, note, of course I knew who it was, right? But no, note, like didn’t ring the doorbell, any of that.
Allison: And so yeah, I think that there are ways to do that either way, right? But I think that’s a good reminder to supporters of like, you know, maybe just leave it and ring the doorbell or send a text that just says like, check your steps or something. But I think also when I say the thing about like, it’s hibernation time is like, there aren’t like social events right now that we have to decide, do we go?
Allison: And then, you know, and sometimes that can feel really good and distracting. And other times it can be like, everyone’s looking at you like, oh, there they are. What do we say? You know? And so it’s kind of nice that right now it’s February and it’s a pandemic. And so everyone expects us to just stay in our house and take a nap. Great, I can do that.
Justin: You know? Well, also given that it’s a pandemic, I imagine you weren’t at these appointments.
Allison: Well, there weren’t. So there haven’t been appointments.
Justin: Or I mean, the procedures or whatever. Yeah, like you’re not. And going forward, that’s probably also gonna be the case.
Allison: Correct, yeah. So I mean, that was a huge thing when he had that one last week. That, you know, I’m usually there for everything. And I just had to drop them off. So that was actually a weird, that feels like so long ago now, because we’ve already gone through so much in the last week and a half. But that felt really strange because I dropped them off and then came home. And then I was like, well, now what do I do? So it was a work day. So I like kept working.
Allison: And then in the evening, because his procedure is at like two or something. And so it was like afternoon and evening. He didn’t come home till like seven or eight p.m.
Allison: But then in the evening, like Maya and I did algebra together, you know? And I was like, this is so weird because I’m here. So I should be doing other things, but like half of me like was really not there.
Allison: You know what I mean? So that the next morning I was like, well, I probably won’t be as tired because like I wasn’t there. I wasn’t going through all those motions, but oh gosh, I sure was.
Allison: Because like I was sort of doing both. Somebody told me this, I had forgotten about it until just now, that somebody told me this amazing analogy of like usually when you’re like able to be at a surgery with someone, you’re like in the car, the proverbial car with them, and you’re like riding along. But in these times, it’s like you’re like chasing, you’re on the outside of the car and you’re like chasing behind the car, trying to figure out like what’s happening? What’s going on? And so it’s like exhausting because like, like I would again like be in this moment of like, oh, I’m doing homework with Maya, or I’m working and then like the phone would ring and it would be like operating room to be like, just giving you an update. And I’d be like, oh my gosh.
Justin: Yeah.
Allison: You know, just like all like sort of this like, oh, I’m so glad for this. And also, oh yeah, like my husband is currently having surgery and I’m in my house.
Justin: Right.
Allison: You know, it just was like a really like cognitive dissonance moment, you know, that I realized the next day like felt like had taken its toll on me.
Justin: Well, yeah, you’re kind of like, I mean, mentally, you’re definitely in two places at the same time there or even if you’re not aware of it.
Allison: Right.
Justin: Definitely gonna take a toll.
Allison: Yeah, right. So this next one, you know, I imagine certainly there, unless things change drastically in the next couple weeks, like I will probably not be able to be there either. And that, I mean, that feels a little harder, just also because I’m wondering with this one, if it’ll be more like, what did we find? What did we, you know, this one felt like I was supposed to be more clear cut.
Justin: Yep.
Allison: Like how extensive did it have to be? You know what I mean? And so I’m gonna have to think about like, what do I do for myself that day?
Justin: Yeah, don’t work.
Allison: You know, if I sit here, right? I know. But you know what’s so hard about that? Like, sure, I shouldn’t work that day, but it’s the place we’ve talked about many times. It’s the next day. That’s usually terrible.
Justin: Yeah, that’s true. It’s that, yeah, that hangover.
Allison: The hangover day.
Justin: Yeah.
Allison: So we’ll have to see. Yeah, so just a lot. And then, you know, last night we told Maya, because we realized like, we should probably, like she’s probably gonna be like, why is our house full of brown?
Allison: Like, why do people keep bringing us baked goods? So we talked to her, you know, and just sort of said, here’s the thing that’s going on. And she was just like, ah, you know, and she’s like, she, I love this approach. She’s always been mad at the doctors for like hurting him.
Justin: Yeah.
Allison: You know, she’s like, I’m so mad that they just keep slicing at you and they just keep doing this to you. And you know, and I get that, right? Like, but it’s, that’s kind of the perspective she comes at, you know, and our girl loves food. And so she was very concerned about like, are you gonna be able to eat?
Justin: Oh, yeah.
Allison: You know, and I was like, yeah, eventually he will, you know. So she was more just like mad, like mad at the, you know, mad at the doctors that they’re gonna do it. And like, oh, dad, I’m so, and she’s so sweet.
Allison: She’s like, how do you feel about this? So that’s just another layer, you know, of kind of helping her walk through dad. Yeah, figuring out like, what do you say?
Allison: And how do you keep it like sort of light, but also real? Like, I mean, she’s 14 now, right? So like, it’s not like we, not like when she was little and we would sugarcoat all the things.
Allison: That’s a whole other layer too, is of that. Yeah, so I’m tired.
Justin: Yeah, you have earned every bit of tired that you are right now.
Allison: And I think another piece, so many of the pieces, is just like, so this was barely found. This was found because she said, let’s take a picture, and then because she was super, super aware, super vigilant, right? And so it just makes you sort of like, sometimes after he has his scopes and his scans, we’re like, clean, we’re good for a little bit. But to be like, oh man, what else is lurking around in there?
Justin: How does that feel with right now, you and Sean are responsible for doing the imaging? Like is that heavier in this case?
Allison: That’s a good question. I think up until now, it hasn’t felt. It’s felt okay. I don’t know if in the future, she might in the future after this be like, you know what, we’re not doing pictures anymore, you’re just coming in. Even though his camera caught it, right? But there is that, because we’re doing the same thing with dermatology, that he keeps taking pictures of all of his concerning skin spots and then sending it to them.
Allison: But I think it hasn’t felt like too much pressure, but now going forward, it might. And I think to the advocacy piece, right? Because the second doctor was like, you know, I think this is fine. I don’t think it’s going to be anything. And so what is the place where we say, I don’t care if you don’t think it. And we’ve done that before. I don’t care if you think it’s nothing.
Justin: Yeah, we’re doing this.
Allison: We’re doing it, right? But yeah, it just kind of feels like, oh, what else is lurking there that we haven’t caught or that’s so small or that’s ready to erupt?
Justin: Yeah, that’s-
Allison: So that’s a pretty terrible feeling.
Justin: It’s a hard place to be. So how long is it? I mean, you maybe don’t even know until you have a clearer picture of what the next days, weeks look like?
Allison: She said that the nurse called last night and said that she hopes that on Monday they’ll call us. So they think that the surgery will likely be March 8th, but they need to confirm that, which feels like a long ways off.
Justin: It does.
Allison: So yeah, March 8th, because we’re recording this on the 20th. But yeah, hopefully on Monday, we’ll be able to talk to the surgeon and get some more details. So that will help a little, I think.
Justin: At least hopefully with that purgatory place.
Allison: Yeah. Right. But the other thing is he’s still in lots and lots of pain from the surgery last week.
Justin: Right, yeah. It’s not just dealing with this news. He just had surgery.
Allison: Right. Yeah, so lots of pain meds, lots of, he’s got this beautiful thing called a jaw bra that he wears around his head. That like, it’s like a big stretchy thing with Velcro that you can slide an ice pack into. So that the ice pack, you know, it’s on the part of your mouth where it hurts. So he’s been rocking that around the house. So yeah, a lot.
Justin: Yeah, that’s a lot.
Allison: It is a lot, yes. So I will say to the, some things that people have done that have been really helpful, and maybe a couple of things people have done that have not been so helpful. As long as this is a learning community, right?
Allison: People want to learn. I will say a couple of things not so helpful is, you know, hearkening back to our Toxic Positivity episode. I’ve heard a couple of like, well, at least, or on the bright side.
Allison: And so just a little reminder that like the person having the hard time can name their own bright side if they want to.
Justin: Yeah.
Allison: But we don’t need somebody else to do it for us. And on the other side, so many people have done amazing things. And so everything from, you know, people sending kind messages, people sending funny things, so many baked goods.
Allison: Somebody’s bringing dinner tonight. And also a couple of people who have brought things have said like, I’ve really been trying to think about, like, what’s something that’s easy on the gums? And I’m like, oh, so just like sweet, you know, sort of things like that.
Allison: Or somebody, the person who brought the brownie sundae said like, I’d like to bring something. Are there any allergies or aversions? You know, so it wasn’t this whole like, what do you want? And what are you bringing? It was just like a quick, like, I don’t want to bring this if nobody can eat dairy, you know, things that have just showed up on the doorstep, you know, like, so just a lot of really kind things. And I think you alluded to this earlier, but the like remembering to include the phrase, like, no need to respond with everything, because otherwise, like, I’m, you know, and sometimes even when people don’t say it, I have it.
Justin: Right, I imagine your inbox and your texts and all of that is full.
Allison: Yep.
Justin: Yeah.
Allison: Yep, there’s a lot of that, which I am grateful for, and don’t have the energy to, like, personally respond to all the people. So yeah, so those are just some things so far that people have, you know, and I did have somebody who reached out and said, like, what can people do from afar? And I think for some people, like, those generic questions, you know, that’s not helpful because they’re like, I’m never gonna name something.
Allison: We’re at the point where we’re, like, ninja level, so I’m like, sure, I’ll give you some things.
Justin: But it’s also kind of like, I think we’ve talked about the circle theory a little bit, haven’t we, where it’s like, you care in and you, I don’t know if it’s like, dump out. Yeah, so it’s like, as someone who wants to support a caregiver, like, putting that, like, what do you, you know, what can we do from afar? Like, that’s not the best direction to be going with that.
Justin: But also, like, being far away, it’s like, what can you do? And it’s someone who, I imagine, in this case, like, it’s someone who genuinely really wants to do something and is really, like, cares.
Allison: Yeah, so I think that it’s tricky, so you have to know your caregiver, know the caregiver you’re supporting or the person you’re supporting, because, again, for us, like, I’ve been doing this long enough that I’m comfortable responding and saying, you could do this and this and this.
Justin: Right.
Allison: So I love that request. Whereas I think for some people, it’s met with sort of like, okay, cool, I’ll let you know. And then a lot of people on their caregiving journey don’t feel comfortable sort of saying what they need.
Justin: Right. Yeah, and I mean, I’ve certainly been in that place where it’s either you don’t feel comfortable or you just don’t know. You’re just, it’s a time where you’re just so, like, in the thick of it that it’s like, I have no sense of what that would be or what we need.
Allison: Yeah, right.
Justin: And there’s other times where it sometimes feels like they’re offering something so generic that there’s, it feels like they’re not expected to actually do something. It’s kind of like they’re, it’s checking a box or something.
Allison: Right.
Justin: And certainly that is not always the case, and, you know, I’m not.
Allison: Right.
Justin: But there are times like that, and that’s hard, that’s frustrating too, because it’s like, don’t, like, don’t put that line in there, and just leave that out.
Allison: Right. Well, I think it’s hard too, because you don’t know, does the person, is the person thinking like, I’ll send you a greeting card for $1.99, is the person saying like, I’ll send you a $100 Target card, like, I don’t know what this means, and so how do I respond? Something fun that I did with Maya today, and it is fun that she’s older now, is that I was like, guess what?
Allison: People love us, people want to help us, they’re asking what they can do. So think about it, like, think about, is there something that would make your day or your life like a little sweeter? And I was like, maybe it’s like a gift card somewhere, or maybe it’s like a shirt that you got from somewhere.
Allison: And she’s like, really? It’s like, yeah. I mean, people want to do something. And so if there’s something you can think of, spend some time thinking about that. And so I thought, that’s kind of a nice, typically if people send us gift cards, I stash them away, you know what I mean? And I’m not like, hey, Maya, look at this.
Allison: But I’m like, she’s old enough that I’m like, hey, if there’s something, let’s give her some fun today that she gets to think about something she wants. And often the givers are, like it makes their day to be able to do something. So if I can say to someone, Maya would really like this shirt and they can order it, they are, you know, win-win, you know.
Justin: Right, and the more like win-win situations we have like that between the caregiver and the supporter, the more support will flow in the future.
Allison: Yeah, which is the goal, right?
Justin: It is the goal.
Allison: Yeah, and I think too, I mean, if I may say like, if it wasn’t me, I would say like send a caregiver box.
Justin: Right.
Allison: Right? I mean, this is the perfect moment that if it wasn’t, if they weren’t my boxes, like if somebody sent me that, and then I had this thing that said like, you’re part of the story, I would just like, I think, melt, because I would be like, oh, that’s why I’m so tired. You know, and I have to say that I like, as weird as it sounds, like I’ve been really like supported by my own merch.
Allison: You know, like the other day, like I was putting on those socks, like the I have a story socks, and I was like, oh my gosh, like it’s true. And it’s, whereas people are, you know, certainly everybody’s thinking about Sean, and of course, that’s true and should be like, I’m over here carrying a whole lot of stuff and feeling really tired and, you know, all the feelings about it. And so to have a mug and socks and things that remind me like, I’m part of this too.
Justin: Yeah, I think that’s like a really empowering or sort of pivotal moment as you’re going down, being a caregiver early on, it doesn’t feel like, like you do feel like in the background or like you’re not the focus, the person you’re caring for, like that’s what’s going on. And when you like can kind of reach that point of like, you know, I have a story here too, and I’m included in that, and to have to then feel you matter in the situation kind of or something. Yeah, absolutely.
Justin: Just that it’s huge. Because like you were talking about, you know, sending your caregiver box to somebody and just like, oh, I am part of the story and just like melting.
Justin: Like right now, that feels obvious to me, but I think for so many people, they’re still in the thick of it and like, need that reminder. And certainly there’s times when I need that reminder too.
Justin: But yeah, so I do hope that whether it’s through, you know, us here, this podcast, whether it’s someone sending them a gift box, whether whatever it is that more caregivers can kind of take like ownership of their role, of their part in what they’re doing. Yeah, just really, I don’t know, embrace the, I don’t know what the right word is, but, or empowerment or something that comes with that, like taking control of your role as a caregiver, I guess.
Allison: I think like the word ownership for some reason is rubbing me a little bit the wrong way, because I feel like it feels like another job I have to do, right? Like, okay, now, now, now Allison, on top of all the other things, you should go take ownership of this, right? So I think it’s more about being, because I think we’re in it.
Allison: So I think it’s more about sort of seeing our role in it, maybe, like seeing it, recognizing it.
Justin: Recognizing it for the importance that it is, kind of?
Allison: Yeah, yeah. Ownership, for some reason, seems like too much like a task I have to go through.
Justin: I understand that.
Allison: You know what I mean? But I think seeing like, yeah, you have a role in this. You have a part. You’re there, right with it. Like, you’re part of the story. And yeah, just realizing that.
Allison: And so I think both for the caregivers themselves and for the supporters that like typically, like if we were brand new with this, some people didn’t know us, they’d be sending stuff for Sean, you know, which they should. And I think because people know us and have heard me, you know, go on and on about this for years, like they send stuff for me too and for Maya, because they realize it’s not just Sean that’s going through it. It’s the whole family.
Justin: Exactly. Well, I’m sorry that this is the spot you’re in, all of you, and you’re just kind of in that tough place of waiting and wondering. And I hope that at least Monday, you can have more information to kind of feel like you have a better handle on the situation and not that that’s necessarily going to make it easier.
Allison: Right.
Justin: But yeah, over here, we’ll definitely be thinking about you guys going into the next couple of weeks.
Allison: Thank you. Thank you. And I think it’s nice to know I have this space to know I’m going to come on here and be supported by you. And so I appreciate that. Thank you. And for letting me show up and however I’m going to show up.
Allison: Last time I was coughing, this time I’m just real tired. So I appreciate that I can show up here however I am and be supported. So thank you for that.
Allison: Yeah. Well, and I hope too that by the next time we talk that Sarah will have maybe seen some results of that medication. That would be amazing.
Justin: Yeah. And that’s something maybe we can talk about in the future of that spot of, you kind of want to be hopeful, but hope can really let you down sometimes and balance that.
Allison: Yeah, hope is not something that we get to have very often. So that would be a great thing to talk about. Yeah, good.
Allison: All right, my friend, good to talk to you. Thanks for all your support.
Justin: Well, it’s great to talk to you as well and talk to you in a couple of weeks.
Allison: Okay.
Justin: All right.
Allison: See ya.
Justin: Bye.
Allison: Bye.
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