Scott Benner 1/20/24 Scott Benner 1/20/24

#1111 RJs Mom

Jessica is 32, an engineer in the military and the mother of a 7 year old boy named RJ.

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Scott Benner 0:00
Hello friends, welcome to episode 1111 of the Juicebox Podcast.

On today's episode I'll be speaking with Jessica and engineer in the military and a mother of a seven year old boy named RJ who has type one diabetes. He was diagnosed at five years old. We talked about a number of different things today, including Omnipod, five Dexcom, libre three, and some of the history of type one diabetes in Jessica's family. There's also some conversation about hypothyroidism. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones, it doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community check out Juicebox Podcast type one diabetes on Facebook. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin.

This episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. And find them on Facebook and Instagram touched by type one is an organization dedicated to helping people living with type one diabetes. And they have so many different programs that are doing just that check them out at touched by type one.org. This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us met.

Jessica 2:21
I am Jessica. I am a mother of a son with type one diabetes, his name is RJ and me and his dad, my husband we do as much as we can to keep him happy while also keeping him you know safe while he's at home and at school and managing his diabetes. And, you know, just trying to make sure he has the most normal life that a kid his age should have. It's a good plan.

Scott Benner 2:52
How old is RJ?

Jessica 2:53
He is seven? Seven?

Scott Benner 2:54
How old was he when he was diagnosed?

Jessica 2:56
He was five years old.

Scott Benner 2:58
Okay. Do you or your husband or anybody in your family have type one diabetes?

Jessica 3:05
Yes. On my side actually. I have a I believe it's a second cousin. He had type one diabetes. He did not know he had it. And he actually he was he's a professional NFL player. He did not know he had it. He actually passed away due to decay. So we found this out kind of after the fact after our son was diagnosed.

Scott Benner 3:32
How long ago was that?

Jessica 3:35
That the second cousin had it? Yeah, that passed away. That was many years ago, possibly. I want to say eight or nine years ago.

Scott Benner 3:47
And he died as an adult I imagine. Yes. As an adult. Yes. So So diagnosed, and then not. Not dying. Sorry. Yeah.

Jessica 4:02
Yes. He was not diagnosed. And he ended up passing away. Wow. Due to decay. Yes. That's

Scott Benner 4:11
crazy. Oh my gosh, yes. All right. Okay, let's see. But that's not something that you were thinking about when you were having kids.

Jessica 4:23
Not at all I knew and in this happened before my son was even born and so I didn't even kind of know at the time that he had even passed away because of that reason. I knew that my family had a history of type two diabetes and pre diabetes but not type one. So at that when my son was diagnosed, I didn't even kind of know the difference between the two.

Scott Benner 4:51
So okay, okay. So talk about our J's onset. What did you notice first, and how did you figure out that he had type one So

Jessica 5:00
his onset happened around COVID. We had just, I'm in the military, so we had just was called PCs, we had just had a change of duty station from California to Tucson, Arizona. And, you know, we're wrapped up in that that transition, you know, he's in daycare. At the time, he was a young, five year old, he wasn't old enough to start school yet, due to how they, the school we had moved to the district moved to how they do the age difference, or whatever. So, um, he was, obviously during COVID, you're looking out for symptoms of COVID, during that timeframe. So he, you know, he was tired and exhausted a lot leading up to the diagnosis to him being in DKA. And so we thought that it was because of the temperatures that we were dealing with in Tucson, we were we had just came from the Bay Area in California. So very cool weather, to the complete opposite of triple digit heat and things like that. So we kind of thought that he was just really having a tough time adjusting to the temperatures to the new weather, and things like that. But yeah, he was, you know, doing the classic wetting the bed at the time. And, again, like that was, I literally, he had worked her bed, and he came in our room, in the middle of the night. And I said to my husband, he might have diabetes. I was like, half asleep at the time. And, you know, if days go on, and you know, symptoms are still happening to where his preschool teacher calls us and says, Hey, RJ, he has not been eating today. He slept through recess, which is not like him whatsoever. And I knew that too. So it was really his day, his his preschool teacher had only been with him for a few months that really made, you know, just realize like something is really wrong.

Scott Benner 7:16
Just to go overnight, that night, when he came to you, what made you say he might have diabetes? Like what? What triggered that in your mind?

Jessica 7:23
I knew from I cannot remember where, and I might have just googled it too. But it was just a distant memory of a sea of hearing extreme thirst. And, you know, Bedwetting, and exhaustion, I knew that that was something and I just hit diabetes and you know, kind of rolled back over and with asleep, you know, that's, and I guess it Yeah,

Scott Benner 7:54
well, that's really something though they did it occur to you like that. Exactly. So when the when the teacher reaches out to you, does that kind of put it all back together for you? Again, you'd like to know, somebody else pointing it out and saying it?

Jessica 8:07
Not? Not at the time, because you like I said it was during COVID? And I'm like, if it's not COVID? What can it be? It's like everyone's main focus, right? The time was like, he's like, he's not coughing, none of the classic symptoms of COVID. So I took him I was able to quickly get him in to see his pediatrician. And I'm thinking, okay, like, they have to know something. And so when they were, you know, checking his vitals and they did the they checked his vitals and they were doing the, you know, the flashlight, the light in the eyes, you know, movement events, when there's one one of the airmen that you that he quickly leaves and goes to get hit the actual pediatrician. And so she does some, you know, checking and she's like, You guys need to go straight to the to urgent care to the emergency room. So I'm like, okay, and that's when I'm like, okay, something's got to be like really grown. Right? So, like I said, we're new to the area. I'm trying to figure out like friends, I had that point, I was having to carry him because he just was not. He was so leak, just was not able to walk, like very quickly or even like much at all.

Scott Benner 9:29
So you get that to you. I'm sorry, you get him to the hospital, and he's in DKA. I imagined I used to hate ordering my daughter's diabetes supplies, and never had a good experience. And it was frustrating, but it hasn't been that way for a while, actually for about three years now. Because that's how long we've been using us med us med.com/juice box or call 888-721-1514 With Us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. They always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps, and diabetes testing supplies to the latest CGM like the libre three and Dexcom g7. They accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do. What do they do for him?

Jessica 11:01
So we at first we were at a an ER and er that wasn't even, like part of a hospital. Like I said, I just was like, giving to the quickest because this one, and so they did a fingerstick after I was telling them the symptoms. And I guess the one meter they had it wasn't even giving a number. It was like giving some error or high or something. And so that's when they started doing some blood work. And that's when the doctor came in and was like We suspect Yes, type one diabetes. And they were like we need to get him you know, to a pediatric hospital. I see you as soon as possible. Are

Scott Benner 11:45
you frightened at that point? Do you recollect this family member? Yeah, by the way?

Jessica 11:50
No, not even not even close? No, I Yes, I'm frightened. And I'm just thinking that this could be tied to the Type Two diabetes that's in our family. I see. So my grandmother had issues with, you know, diabetes, and I think an uncle did and stuff like that. So that's kind of still in the back of my mind.

Scott Benner 12:16
You and your husband are together at that moment. The three of you are at the hospital.

Jessica 12:21
Yes, yeah. Yep. Now, do

Scott Benner 12:23
they put him in an ambulance? Or how did they get them to the next place? Yes.

Jessica 12:27
Yes. They put him in an ambulance in my in got him to the ICU, which was about about 10 minutes away. Did you ride with him? And they waited? Yes, yes. rode with him. They kind of waited till they couldn't do much there. But they still were they want it to give him some fluids prior to, you know, him leaving, so that they can make the trip.

Scott Benner 12:52
That's amazing. Well, obviously, he's okay now, which is terrific. How long? How long was he in the hospital for?

Jessica 13:00
I think we're there for about three or four days,

Scott Benner 13:03
that seems to be about the number anymore. It's yeah, what I'm hearing from people. What do you leave with as far as management ideas go.

Jessica 13:12
So if a hospital that when about, maybe a day, after, you know, once they got the confirmed diagnosis and everything, that's when they had a pediatric like nurse endocrinologist and an educator that, you know, came in, you know, and broke everything down to us and gave us some training, helping us understand what's going on why it happened, or why it could have happened, or, you know, just understanding what diabetes type one diabetes was. So, it really sucked because still, this is still I guess it's still COVID and so only one person is really allowed with the patient and that has to be paired essentially. So of course, I'm the amid Mama Bear mode, still some tilt my husband go home, I will stay. And so pretty much I'm like completely sleep deprived, because I'm not I haven't slept, you know, machines and beeping is keeping us up and things like that. So I was trying to process it as much as I could. But I was I was really getting so frustrated because I could not process anything just because my brain was was not working at all so

Scott Benner 14:34
well. Yeah, I mean, it's the same thing right? It feels like it feels like you know if anybody's ever been in a car accident before you you again you're okay you get out and people start talking to you and you just you don't process anything at all. It feels very similar to that. Exactly. Yeah. So like like having like a like just a loud band go off next to you and then somebody starts asking you algebra you know, like I don't Wow. Oh my gosh. So when you leave? Is it injections? They give you a pen, they give you a needles? Are they talking about pumps? They

Jessica 15:10
told us eventually, you know, we would, you know, hopefully be able to get on a pump. But um, yeah, we were given, you know, the the meters, the insulin pins and things like that they were able to give that to us from the hospital because our insurance was not going to be able to kick in to start paying for it. And I guess they kind of anticipated that. So, yeah, the pins, the pin needles, things like that, you know, we're given him the Lantis and hemo. Og,

Scott Benner 15:45
how did he handle everything? I mean, he's young, but was it? Like, what was his reactions?

Jessica 15:51
He was confused. He was like, what's, what is going on? You know, like, What do you mean? I have to get, you know, all these of these finger pokes and, and the shots and things like that. And at that time, we weren't even prepared to answer that question. We couldn't even, you know, like, like, why is this happening? You know, like, so I mean, he handled it as well as any, you know, five year old at the time could so no, he handled it a lot better than what what I could have.

Scott Benner 16:27
Well, how long does it take you before you feel like you understand what you're doing? Even a little bit? Like, when's the first time you remember thinking like, oh, I might have this? Oh, wow. Maybe hasn't happened, which would be completely valid, by the way? Yeah.

Jessica 16:42
It's definitely not 100%. But it sucks, because I think I had to leave for work to go to a school that I was scheduled for, like, a few months later. So I mean, we were blessed to have even before this happened, my in laws were planning to they they lived in Alaska at the time, and so they were ready to leave, leave Alaska, and come down to the lower 48 to, you know, find somewhere else to move. So they actually came and lived with us. So while I was at the school, like they were helping my husband, you know, with everything. And so that's perfect. Yeah.

Scott Benner 17:28
Yeah, kind of easy transition to have more people raise

Jessica 17:32
more hands to help. Yes, exactly. But yeah, I feel like maybe a year or so I think once. I think what he was able to get on the pop, and on a CGM. I think some months after is when we were like, okay, you know, he's reacting this way to X, Y, and Z, or he's reacting this way to this food, and stuff like that. So it took a while, maybe about a month and like, it's like, you know, better that you learn something every day. Okay.

Scott Benner 18:10
Geez, it's like it nonstop. Like, that's interesting. That's different. I should probably remember that. Yeah. It's yeah, I just thought the the point you made earlier, Jessica, about people are telling you things at the hospital, but you can't process them. I don't know that we talked about that enough. That you're being given really important information. And you're not really filing it away in a way that you can access it

Jessica 18:36
not at all. Yeah, yeah. And, and I am like, I, I, I'm a numbers. I'm an engineer. Like, that's what I do for my job. And so it was really frustrating me, because I'm like, I know this is important. Yeah. And even if it's like, my job, like is no as important as getting even more frustrated, because I'm like, when I leave here, I feel like I'm not going to know what to do. Like, because I'm just not what you're saying is so important that I'm just not grasping it. So I was really frustrated with myself and things like that. So plus,

Scott Benner 19:16
if your mind works that way, then you want one plus two to equal three. And Exactly, yeah. And that's not happening either. So you're like, well, so there are rules. VDS is the complete opposite. There are rules, but the rules don't end the same way each time. That's hard. I've been taught this while under fire. So I'm not really remembering anything and then plus the longer you get away from diagnosis, the more you start to realize that even the things you were being told back then were very elementary to begin with. And you think you're you think you're missing out on like the Holy Girl, like they've told you the secret to everything and you forgot it. And exactly, yeah, the whole situation is Back password, I think somebody would say, yeah, yeah. And, and I do get that that's why they wanted like, bring you back and tell you more later, but just your something about good.

Jessica 20:15
And even the I think his claim I'm being no fault to them, but even his clinic that we ended up going with or to the hospital, even then we are coming back like I think maybe a few days later. And we're still sleep deprived. Because you know, you're doing the finger sticks in the middle of the night and you're cheating the lows, or you're even Bolus for the highs.

Scott Benner 20:44
And you're sad. And all the psychological stuff is magnified. You know, there's just there's so everybody feels guilty, like, I'm sure your husband's like, Oh, this is coming from my side of the family, you're thinking the same thing? You know? It's exactly it's a lot. The only real answer to all of this is time. That it's time and good information. That's it. It's the whole thing. Did you ever figure out or did you ever look, excuse me? Were there other autoimmune issues in either side of your family?

Jessica 21:17
My mom has an immune disease. And then for from me and her we are, it's not the typical art. It's just sickle cell trait for me and my mom and I'm, I get an email, she's anemic and things like that. That's really the only only thing I can you know, how

Scott Benner 21:39
do you think, Jessica, how do you handle your anemia with oral or do you get infusions. So

Jessica 21:45
it's not bad, it only gets bad during, and I can't even pinpoint it. But I can kind of understand just by based off of symptoms to where, and it's not bad. It only was bad when I was pregnant with my son. So and that's when I had to, you know, take the oral pills, but usually, you know, I can quickly, you know, alleviate symptoms and stuff by you know, eating more red meat and things like that. There's only been like a couple of times where I was taking the iron pills.

Scott Benner 22:19
Okay, that's great. I actually I get low. I get like any, like, low iron symptoms, and wow, my ferritin gets low, and it almost like shuts me off eventually. So Oh, wow. Yeah, that's crazy. Arden takes actually Arden my son, I think everybody in the house is taking some sort of an iron supplement, like a couple times. Just to try to stay ahead. Yeah,

Jessica 22:43
exactly.

Scott Benner 22:45
How about for your husband? Anything for him? His side of the family? No. Okay.

Jessica 22:49
Not that not that I can think of now.

Scott Benner 22:52
Were you planning on having more kids? And are you still

Jessica 22:56
it the time beforehand? We were considering it. But now we're not. And it's not fully because of diabetes. That that type limit my son has is, is I think that I've usually when the diagnose happened, diagnosis happened, you know, you, we definitely put that those types of talks on pause because they're like, oh, we need to figure this out first and figure out our new life. And then you know, time passes and time passes or, you know, then we're like, you know, I think I think we're fine. We've always wanted to adopt a child. So and that one that's close in age. So we took that as a sign like, hey, let's make sure we don't lose sight of, of that dream that we had.

Scott Benner 23:46
So that's a love. Yeah, hopefully lovely. I do. Yeah,

Jessica 23:49
yeah. And bonus points. If they're type one. I

Scott Benner 23:52
know what you're doing, right? Yeah, I'm adopted. Exactly. Yeah, Jessica, I'm adopted. So wow, somebody saved my life 51 years ago. So yeah, it's a really cool thing to do. That's awesome. I guess I want to ask you now like because the note you sent, like, at what point in your management style because you're using Omnipod? Five now? Is that right?

Jessica 24:14
Yes, we're using Omni pod five and the libre three. Okay.

Scott Benner 24:19
Oh, wait. You you can't use on the pod five with libre three. So well.

Jessica 24:24
Yeah. No, we're not using it with it. But we're Yeah, we're in manual mode with the five we were using Dexcom. But we had some several issues with it. So we had to go. Oh, I gotta go into manual mode for the five in the CGM is liberi.

Scott Benner 24:40
I see. So do you think you'll go back to Dexcom or wasn't working for you? Well,

Jessica 24:46
um, we This has actually been our second flip flops which I don't know. I don't know if we'll go back. Because when when the sensors were working for us, it was only part five was great. But you know, we were, you know, barely making it to like four to five days with the sensors. And it wasn't an issue with them falling off. It was just them constantly saying he was low. So it was it was shutting off his. His Yeah, exactly.

Scott Benner 25:18
I wonder if now this is looking forward. So just for people listening who might not understand Dexcom G six at the moment is the only CGM that works with on the pod five. You can put on the FOD five into manual mode and just run it like a regular on the pod dash you would. So that's what you're doing right now because you have the script from pod five. Right? I wonder if I do wonder if when Dexcom G seven pairs with on the pod five in the future, which I assume it will sooner than later. I wonder if that's not the time to try. Because if liberi is working for you, but the G six was and I wonder if the G seven would because of the different insertion angle and other things possible?

Jessica 26:00
Yeah, yeah, we would definitely, we would definitely try it right now. We're, we're paying out of pocket for the Libras. Because they're, you know, kind of very expensive right now. And so we're just waiting for hopefully, the g7 g7 being integrated. And then, you know, we'll just look at it again, be able to once that happens quickly switch this script over to that.

Scott Benner 26:27
So you have a unique perspective, though, Jessica, because you have like you've done it manually with shots. And then after a while you were doing injections. Did you get a CGM first?

Jessica 26:38
No, no, we're still I think we got them all around the same time. So we got Dexcom as well.

Scott Benner 26:43
So what's the difference between manually handling things with injections, an automated system like Omnipod, five, and a pump that doesn't have automation, like what of your experience has been the differences and maybe the pluses and minuses. So

Jessica 26:59
obviously, a new E five or six year old is not going to be okay with the constant shots. So that helped out a lot being on the pump, for my son, and then him going back to his preschool, it helped as well. Because the you know, the paraprofessional was able to just quickly, you know, look at the Dexcom numbers and then look at the pump and, you know, just quickly push some buttons and, and, you know, give them insulin. So it's so funny, she would come outside while they were on the park and, you know, check check to get in range and everything and his friends would stop playing and they all go over it over the ParaPRO they were like Artie, you gotta get your blood check. So they would and then, you know, they made sure he wasn't left alone, like then it that they all stopped playing so that he could make sure he was good to go. So and then I think now, obviously, like I said, the integration with the CGM was, was amazing, when we left the that integration and went back to the manual mode. I had to I listened to I think two of your podcasts about essentially figuring out what that Basal rate should be and how to make adjustments. So I did that all on my own, didn't work with his endocrinologist with on that, not because they weren't capable. It was just I knew I was gonna be able to do it much quicker. And like I said, I'm a numbers person, I love looking at data. And I was just able to just look at those graphs and understand based off of, you know, what you were saying and just some other information that I knew was I was able to make those adjustments. So

Scott Benner 29:09
you got like his Basal said is insulin to carb ratio is his sensitivity all together just through the podcast and understanding it on your own. Yeah.

Jessica 29:18
Yeah. So I kept I didn't really change too much with the sensitivity. But I think the and I think I might have changed the car, but it was mostly mostly that that Basal rate, and kind of understanding, oh, there's different times of day based off of what he's doing that it needs to be, you know, either increased or throttled back and then taking it day by day, like, Okay, this is how he reacted, you know, to this time of day because he's having lunch at this time. So, yeah, it's been interesting,

Scott Benner 29:56
ya know, it's it. Listen, the truth is, is that digging in like that It is the way you get that bigger, broader understanding. And in the future things are gonna happen. And you're, you're gonna see like, you'll just, you'll just shift with it. You'd be like, Oh, I see this. Like, you know, there's I think this morning, even Arden and I got up this morning. She's home from college right now. It's her break. Oh, yeah. So it's cool. She's here. And but like, it was time, like, we went to the doctor's, you know, she went to the doctor last week. And it's time for her, like blood draw, you know, so I needed I needed one too. So we went together, we got up this morning fasting, and we went to get a blood draw. And I looked at her blood sugar. I was like, hey, like, you're, you know, the algorithms not having a lot of luck moving you off this like 130? And I said, Yeah, and I was, like, I said, let's just do an override. So we, she's using a loop, we just pushed her loop up to like, 150%. So basically it it increases the power of the of the algorithm and hurt her basil and stuff like that. And we'll do that. Yeah, until it's not until it doesn't need it anymore. But without all the knowledge that gets in your head. What ends up happening is you go I don't know, like, hi all day. I don't know, you know, you just you're like, oh, like bum Fuzzles. You know, you're like, I don't know what? Yeah, but so I love that. Yeah. You dove into it to understand that on your own. It's really cool. Yes, kind of outcomes is he having right now? What are your goals? And what are you hitting?

Jessica 31:27
Can you say the first part it kind of cut out? Oh,

Scott Benner 31:29
I'm so sorry. I was wondering how his outcomes are like, what are your ranges that you shoot for? A one sees that all that stuff? Yeah.

Jessica 31:37
Yeah. So he was consistently in a good range around the 6.0 6.5, a, one, C. And then like I said, when we were having the issues with the Dexcom and stuff, it went up to about 7.4. And so, obviously, I took that to heart. Hope we're now we're changing something. So I suddenly we went back, and we went into manual and everything. And so we're, I think we have that down to like 7.0 right now. So yeah, and so yeah. He his range. So we, we don't have it as tight. Because he any type of kind of activity, physical activity. He reacts very quickly as far as like, a lot of times his blood sugar dropping. And he was also running track for a while. So that was awesome. Just seeing him, you know, overcoming diabetes and kind of still being able to do like a physical activity is so taxing. So yeah, we we keep trying to have him around. Can you hold on one second? Okay. Do your thing. Okay, sorry.

Scott Benner 33:04
No, don't be sorry. Jessica's at work doing this? A lot of information here. But you know, I, I always throw this one up at the beginning. That's so cool. She's in a meeting. I bet. It's our turn to talk.

Jessica 33:22
Can you hear me? Yeah.

Scott Benner 33:24
Was it your turn to talk in the meeting?

Jessica 33:27
was making sure that no one was trying to.

Scott Benner 33:32
I was like, well, like, how old are you?

Jessica 33:34
I am 32.

Scott Benner 33:37
I was like, younger people are like, I could probably make a podcast while I'm in a meeting that's fit that.

Jessica 33:43
I didn't like, gosh, terrible. And I thought it was gonna be one of those meetings that you know, don't have to really pay too much attention. Oh, wait. Oh, this. Make sure

Scott Benner 33:54
it's not that important. Boy, everybody hearing that should think oh, we have too many meetings.

Jessica 34:02
Exactly. Exactly. Oh, that's

Scott Benner 34:05
hilarious. Well, okay, so you're at a set about a seven. Now, your range is a little loose because his activity is making him drop. Was that as big of a problem on on the pod five? Or was it was it was it catching loads from activity and stuff like that for you? Oh, yes,

Jessica 34:23
yes. Yes, it was. It was doing really good. He was in a light when he would have breaks from school or in summer camp. He was doing really well. With catching those lows, especially at night. We would get some amazing sleep.

Scott Benner 34:40
Yeah, no kidding, right? Because we're not

Jessica 34:43
having you know, to wake up that treat lows and stuff like that. So even right now like that's the drawback right now of us being a manual is we're having those lows and stuff like that. So yeah, yeah. Yeah, it's getting better though.

Scott Benner 34:58
Do you have any via like, oh, did you reach out to Dexcom? About the sensors not lasting for you? Yeah,

Jessica 35:04
yes, we did. And, you know, it. We were one trainer, I believe had called. And it was pretty much all this stuff that, you know, we had been told or the regulation or the guidelines if they said it was things we were already doing. Yeah. My biggest, like, what I think might be is because he's very lean and has very little body fat on them. So that's just my only like, theory of as to why it just did not work for him. So

Scott Benner 35:38
did hydration. Did you ever really, like lean on making sure he was hydrated? Yes.

Jessica 35:43
Yeah. He was very hydrated. He was drinking lots of lots of water. Yeah.

Scott Benner 35:54
It really does suck that. I mean, it's just what it is. Right? It's technology, but like, maybe he puts on 10 more pounds or something. And I help. Yeah, no kidding. How much does he weigh at seven years old.

Jessica 36:05
He's he is on the lighter in he's about 50 to 53 pounds. And he's short too. So he literally eats and eats and hit. It completely leaves his body

Unknown Speaker 36:18
to have his thyroid checked.

Jessica 36:21
And yes, his thyroid numbers have. And because his doctor he also looked at that too. Yeah, that came back normal. So

Scott Benner 36:30
do you remember his TSH level by any chance?

Jessica 36:34
I can look that up real quick. His most recent one? Yeah. Would

Scott Benner 36:39
you just because they'll call in range, a pretty wide range. And if he's having symptoms of thyroid issues, the medication helps a lot. You Oh, I'm not saying this is happening. But it's so worth looking if you have a second Yeah, yeah. Okay.

Jessica 36:57
Yeah, let me look right now. Yes.

Scott Benner 36:59
Okay, good. Yeah, please.

Jessica 37:01
So his TSH from October of last year was 3.850.

Scott Benner 37:11
Jessica, that's too high. He needs really needs the thyroid replacement. He does. Okay, that's it, I'm gonna send you a link. Okay, when we're done, okay, to an episode with an endocrinologist who is going to explain everything about thyroid to you, okay, and he is going to start taking that thyroid replacement. And you are going to see his blood sugar's be easier to manage. If he's experiencing any tiredness, you're going to see it go away. And I want to tell you that my daughter was the smallest person in her school. And then she was diagnosed with hypothyroidism. And she's five, seven now as a 19 year old well, so it is, absolutely can get in the way of growth and weight gain and all that stuff. So, okay, I'm going to tell you that my my doctor would medicate probably anything over about a 2.1 that came with symptoms. And really, most doctors are going to just say, oh, that's in range. But if you give us exactly what it says, yeah, so

Jessica 38:19
you have a good one question. So he had just another data point. So yeah, this recent one that was in May, and that one was 1.2700. That's

Scott Benner 38:33
interesting. So maybe it's swinging around a little bit right now.

Jessica 38:37
Okay, so this could be that could that be that there's still an issue? It could

Scott Benner 38:40
be the indication of things are coming that it got high and then it bounced low because right now he's that that the one point whatever is a great number. Yes. But even at that being how many months old now? The last one. The last one was in October was the October the three one or the one? The one that started October? When

Jessica 39:02
was it three?

Scott Benner 39:03
Yeah, I mean, I would draw that right away again, if he was over 2.1. I'd ask for medication. Another one. Okay. Yeah. Episode 413 is called thyroid disease explained it's with a doctor named Addy Benito. She's terrific. And there's an entire thyroid series explaining all of it you can find this series at juicebox podcast.com. You go up to the top and click on defining thyroid you'll see them all right there.

Jessica 39:32
Okay, yeah, yeah, that's good. Yeah, because that is something which made him kind of do a more in depth blood draw at his most recent appointment because you know, he is having the weight issues and things like that.

Scott Benner 39:48
The issue ends up becoming the doctors will most doctors will like ignore not ignore the number but the under for they're gonna be like, I don't know and then they're gonna wait for like real like they physical issues that pop up. And there's no need for that. Like if he's if this is what's happening this is listen, everybody in my family has a thyroid problem, okay? My daughter, my son and my wife, and their doctor, who is the doctor on that recording is going to, like manage them as low as they can get them without a beat without being hyper. And the I just got a blood draw this morning, because my thyroid came back like at 2.1 or 2.2. Last time, and she's checking it one more time. And I guarantee you if it's higher like that, she's gonna give it she's gonna give it to me too. So, yeah, plus, you don't want to miss out on these growing years. Exactly. If that's part of the issue, you know? Yes. 100%. Wow. Yeah, that could be the difference between some real money to play something in college and just nothing. Because by the way, I stalked you a little online. Your husband looks like a big guy.

Jessica 40:57
Yes, he played basketball in college, and I ran track. I

Scott Benner 41:02
was gonna say, we might get a little bit of college help here from this kid. He grows up. Nothing wrong with that. Nothing at all. Yeah, no, I wish you luck finding out more. And the only thing I can tell you is that if you go back and his TSH is in threes, and your doctor says that's not high enough for medication. I'd be looking for another opinion if that happened. Gotcha.

Jessica 41:23
Okay, okay. Yeah. Yeah, I will probably we'll see he was we just moved again. So we're trying to get his care set up now. So I'll talk to his endocrinologist and his PCM and kind of see what they say what? Yeah, one of them bites?

Scott Benner 41:40
Absolutely. I'll send them the episode if they don't believe you. I know. Yeah. Is your husband still in the military?

Jessica 41:47
No, he's not he. He got out after a few deployments. He was in for about six or seven years. So

Scott Benner 41:56
you were to write.

Jessica 41:58
I'm still in your

Scott Benner 42:00
your the wow. Oh, okay. Yeah. So yeah, that meeting wasn't about anything like about my safety, was it? Are you guys trying to find those people in that submarine? I'm just kidding.

Jessica 42:15
No, I will not ever on that. Topic. My true thoughts.

Scott Benner 42:22
If your true thoughts are like mine, it would be don't get into a toy submarine and try to go down to the bottom of the ocean. That was my fun.

Jessica 42:29
There's this thing called common sense. But I you know, I guess Massoud to come? I don't know.

Scott Benner 42:35
You want to see the Titanic. Watch the movie. James Cameron took pictures of

Jessica 42:39
it. Yeah, great. There's great video of that.

Scott Benner 42:42
I've heard people say like, well, who's at fault? I'm like, you're at fault for getting in the submarine. That's exactly, yeah. You gotta have a little bit of preservation in your in your heart. Yeah, I don't do I just saw a video the other day of this couple was terrible. By the way, they get up on a ledge on a building to take a picture. And though, the woman goes up first, and then she kind of gets settled, and they're on a fairly wide ledge, I mean, a couple feet wide, right. But they're clearly trying to get a photo of them being on the top of a big building. Well, he hops up, don't get me wrong, he doesn't he doesn't bump into her. He doesn't do anything. Her just natural reaction was to make space for him. And she shuffled her and fell right off the building. And I thought, like, for a picture, that three days from now, no one's going to remember. So you can get some likes on Instagram, she's, she's gone. You know? What and you by the way, you're a billionaire. Don't go into the water. If I was a billionaire, Jessica, I'd wrap myself in nine times a bubble wrap. And that's how I'd go outside. It'd be bulletproof bubble wrap. I'd be outside like the marshmallow man from Ghostbusters. Yes, please don't let anything happen to me. I get $2 billion.

Jessica 43:55
Exactly. I

Scott Benner 43:56
don't understand. Okay. I so I have. I know, you're, you're you're probably busy. And I'll wrap you up a little bit here. Okay. I want to ask if there's anything that we missed, or we didn't talk about that you wanted to know I

Jessica 44:09
don't think so. I just I just really love you know, that community that you've built and then there's some so many other ones like I mostly through Facebook, but you know, this, things like this, like it helps. But you know, just that group think is just really, you know, helps so many people just get through, you know, day by day because, you know, I'm just like I wonder if there's any other and I'm sure there is like forums like this for other you know, diseases but I don't know what I would you know, do without this this wealth of information.

Scott Benner 44:48
Very happy that it helped.

Jessica 44:49
I'm thankful Oh,

Scott Benner 44:50
I'm grateful that it's helping you and i i hope you never find out if there are other forums for other diseases. I never have to find that out. Yeah,

Jessica 44:59
yes, them So I can take

Scott Benner 45:02
at the end of my rope already. Yes, it makes you feel better. We were going to have three kids and after art and got diabetes, you're like, Okay, I think two is enough. So yeah, that's a lot. Yeah, no, really.

Jessica 45:16
And my son, he has such a big heart. And he was like mind that he's like skiing every few months. But then finally, one day, he's like, Well, we could adopt a kid that has diabetes and our help help them with it. Since I've, I've been doing mine and taking care of my diabetes. I was like, Yo, you're so sweet. Sweet his kid, if

Scott Benner 45:38
you're trying to make me cry, like you're real. All right. Yeah. Tell me that at the end. Yeah, that's really something. Okay. All right. Well, listen, you go back out and find out why those Chinese weather balloons were over Wisconsin, or whatever it is, you're supposed to be doing. It. I got Jessica, You crack me up. When we were gonna pause like we're gonna stop now. And I'm gonna say thank you very much, but just hold on one second for me that I'll let you go. Okay. All right. Thank you again.

I'd like to thank Jessica for coming on the show and sharing her story. And a huge thanks to touched by type one for sponsoring this episode of The Juicebox Podcast. Check them out on their website touched by type one.org or on Facebook and Instagram. A huge thanks to us med for sponsoring this episode of The Juicebox Podcast. Don't forget us med.com/juice box this is where we get our diabetes supplies from you can as well use the link or call 888-721-1514 Use the link or call the number get your free benefits check so that you can start getting your diabetes supplies the way we do from us med

the episode you just heard was professionally edited by wrong way recording. Wrong way recording.com. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#1110 Big Brothers and Sisters

Today we welcome Trisha from Jewish Big Brothers Big Sisters of Greater Boston. Learn more - (781) 516-2090) or JBBBS.org

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, welcome to episode 1110 of the Juicebox Podcast.

On today's show I'll be speaking with Trisha from Jewish Big Brothers Big Sisters. They have a great program that's trying to help children with type one diabetes, and she's here to tell you more about it, check them out@jbbbs.org Or if you're interested in donating your time 781-516-2090 Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show. Don't forget to save 40% off of your entire order at cozy earth.com. All you have to do is use the offer code juice box at checkout. That's juice box at checkout to save 40% at cozy earth.com. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones, it doesn't matter to me. Today's episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contour next one.com/juice box. This episode of The Juicebox Podcast is sponsored by ag one drink ag one.com/juice box. When you use my link and place your first order, you're gonna get a welcome kit, a year supply of vitamin D and five free travel packs. Hi

Tricia 2:05
there. My name is Tricia and I'm coming from Jewish Big Brothers Big Sisters of Greater Boston. We're a mentorship agency, and we've started a type one diabetes program. I'm the clinical director there. And it's just been incredible to see children with type one diabetes, getting a mentorship opportunity through an adult with also type one.

Scott Benner 2:25
For sure. You're the Clinical Director, what's your background? What's your education?

Tricia 2:30
So my background is I Am a Child Life Specialist. I'm certified, then I worked in a hospital for close to 20 years with children with chronic illnesses. And from there I went on to get an MBA and healthcare policy.

Scott Benner 2:43
Okay, Tricia, you're doing a thing right now that we, in my house call the gas station voice. You don't know what that means yet, but I'll explain it to you. Okay. Okay, you and I spoke for a few minutes before we started to record. And you have a little bit of a deeper voice which came through very nicely on the microphone. When my wife goes to the gas station. She is never as nice in her life as she is to the person who pumps her gas for her. And she goes up a couple of octaves to show people how kind she is. We don't know the psychology behind it. We just call it Kelly's gas station voice. Anyway, when I asked you to introduce yourself, you went into your gas station voice. Okay, by the way, this is all staying in. So don't be embarrassed. We're just talking. But you went from like this kind of like resonant voice to like, Hi, I'm Trisha. And I was like, Oh, that was interesting. And the mics not picking it up as well as when you just talk normally? Oh, no.

Tricia 3:36
Okay. All right. Be yourself back to my other voice. Be

Scott Benner 3:39
yourself. You don't have to be nice or anything. Don't worry. They just want to talk to you. Do you know you do that?

Tricia 3:46
No, no, I didn't. My

Scott Benner 3:49
wife says she doesn't know either. But she turns into Mary Poppins at a gas station. Oh, goodness, it's been it's

Tricia 3:54
been around here. We don't have anyone pumping our gas. So I've never been mentioned there. But all right.

Scott Benner 4:00
When I moved to New Jersey, I was like, I got out of my car the first time and the guy's like, hey, hey, hey, we pump the gas here. And I was like, I'm from Philly, I pump my own gas. Like, I don't know what you're talking about. And he goes into law. And I was like, It's my car. I'm gonna pump my own gas. And I still do it in Jersey, like I'll pull up and just get out and do it. But apparently they say it creates jobs. That's great. I'm for creating jobs. Anyway, you can just be like, just relax. Okay, relax. And, and I'm going to pick you through it. So you're from the Jewish Big Brothers Big Sisters of Boston. Is that the name? Yeah. Okay, of Greater Boston, Greater Boston. And you guys, is this a newer programmers? It's something you've been doing for a while.

Tricia 4:39
So it's a brand new? Well, it's been around. We've been around for a year right now doing this program, per se. Our organization's been around for over 100 years. Wow. So we're getting it off the ground and we're having a lot of traction. It's just been really fun to see the growth

Scott Benner 4:54
of it. Very nice. And how long have you worked there?

Tricia 4:58
I've been there for a little bit. For over a year, okay,

Scott Benner 5:01
and tell me again, your your background, your something, education, I'm sorry.

Tricia 5:05
So my background is I'm a child life specialist, I worked in a inner city hospital with children with chronic illnesses for close to 20 years. And from there, I went on and got an MBA in healthcare policy. How do you get into that originally, you know, it's a long story. But it started when I was a child with a family friend whose daughter had a brain tumor. And I spent a lot of time in the hospital with her to see the child life, people coming in and out and working with her and thought, This is what I want to do. So I knew from a very young age where I wanted to go in life. And then now it's just morphed over the years into how I've taken that.

Scott Benner 5:45
Describe the job in hospital a little bit. What did you do there? Sure,

Tricia 5:49
travel specialists work with children that come in. So either they come in through emergency surgery, they're sick, whatever it may be, and we help children understand what's going on with them at the moment. So helping them not just the child, but the child comes with a family. So helping the child and family from the beginning to the end of their hospitalization, if they need tutoring in hospital, if they're having a hard time taking medication, if they don't understand their diagnosis, if they need help around procedural support, if family needs help around procedural support, kind of life, people are there to teach kids about what's going on at that very moment and break it down to them. So it's developmentally appropriate.

Scott Benner 6:34
So ironically, you're almost like a big sister in that situation. Like a, like the, you know, the person in the family who's level headed in the moment and can be helpful. You got it? Yeah. Oh, that's interesting. Okay, so you go back, you get an MBA, that's sounds heady. I

Tricia 6:51
went, I know, well, you know, because then the management shift changed a little bit. And I ended up managing the program in the hospital. And I had an incredible supervisor who was a mentor to me, okay. And she really pushed me to, to reach my fullest potential. And we talked about, like, higher ed, she knew I wanted a master's. And we talked about what the next steps were. And she really helped me to understand how an MBA would be helpful to me as I went forward in life, it's

Scott Benner 7:23
really something when you meet somebody, in a work scenario that's actually interested in helping you get better, or rise, you know, in the organization, because that doesn't always happen. You don't always find a mentor, sometimes you find people were just happy to, you know, keep their foot on your throat, so you can't move up and get past them. And that it's a real thing. And it holds people back. So it's wonderful. When you see somebody doing the kind of the right thing in that situation. Is there something that happened during that time at the hospital that got you focused on type one or? No, right? Like you just, um, how did you make it to the the other?

Tricia 8:02
How did I make it here now? Yeah. So no, I didn't. I mean, I worked with children with diabetes in the hospital, but never specifically, that was my full population. My real population that I focused on, there were children with sickle cell disease, and helping them transition from pediatric care to adult care, which was a big thing, because when you're a child with a chronic illness, the pediatric world is very different. The adult world is, so after I had taken the break from the hospital had done a few other things in my wheelhouse. I found this job and I thought, oh my goodness, how perfect is it to take children with a chronic illness, adults with a chronic illness, and find the best pieces of both of them and bring them together to help each other where they're at. And as much as we say, we call our volunteers, our big sisters or big brothers. As much as we say, our bigs are the mentors. They get so much from the kids, our littles, That's unreal. And so it becomes kind of this two way street,

Scott Benner 9:11
have that experience with what I do. And I try to explain it to people. And I'm sure they can, like picture it. But until you're doing it, you have no idea how like, choosing work that helps other people enriches you. And I usually say that this podcast helps me more than it helps the people listening. They just, they would have no way to know that you know, but it's true. It's changed my my whole world. So I take that point. Incredibly, so you so when you get there, they're not hiring you to like set up, like a type one program. You just sort of happen to come in around the time that the program starts.

Tricia 9:49
Nope. Yeah, I was actually hired to set up the type one program from the beginning. Yeah, okay.

Scott Benner 9:54
Okay. So you were and so they had this idea. We're going to do this thing. And they they go out to get you. So now I'm super interested about what that process is like, how do you on day one sit at a desk and start thinking about this? And you know, what were your goals in the beginning and what did you learn? Along the way. I partnered with ag one because I needed a daily foundational nutritional supplement that supported my whole body health. I continue to drink 81 every day because it works for me. Ag one is my foundational nutritional supplement. It gives me comprehensive nutrition, and it supports my whole body health. Drink, ag one.com/juice box, when you use my link to place your first order, here's what you're gonna get a free welcome kit that includes a shaker scoop and canister, five free travel packs, a free year supply of vitamin D, and of course, your ag one. So if you want to take ownership of your health, it starts with ag one, try ag one and get a free one year supply of vitamin D and five free ag one travel packs with your first purchase. Go to drink ag one.com/juice box, that's drink ag one.com/juice box, check it out. Contour next.com/juicebox. That's the link you'll use. To find out more about the contour next gen blood glucose meter, when you get there, there's a little bit at the top, you can click right on blood glucose monitoring, I'll do it with you go to meters, click on any of the meters, I'll click on the Next Gen and you're going to get more information. It's easy to use and highly accurate. smartlight provides a simple understanding of your blood glucose levels. And of course, with Second Chance sampling technology, you can save money with fewer wasted test strips. As if all that wasn't enough, the contour. Next Gen also has a compatible app for an easy way to share and see your blood glucose results. Contour next one.com/juicebox. And if you scroll down at that link, you're gonna see things like a Buy Now button, you could register your meter after you purchase it, or what is this download a coupon? Oh, receive a free Contour Next One blood glucose meter, do tell contour next one.com/juicebox head over there now get the same accurate and reliable meter that we use.

Tricia 12:19
So in the beginning, I sat down and thought where are we going to find these? That was my first thing like, how are we going to get our name out? How are we going to get parents to trust us and share with them what we can offer to their children and say to a parent of a child with a chronic illness. Now we want you to send your child out with this big for two to four hours, and not be in touch with them in realizing that we had to kind of change a little bit of the bill that we do to make sure the parents do stay in touch with their kids, because they're not going to comfortably just let their child go off. After they've been, you know, monitoring things left and right. So I sat there and thought where am I going to find them. So I started reaching out to schools, to different pediatricians office and different offices, the local diabetes centers around us and making relationships with the Social Work team with the Child Life team, with the physician with support staff, whoever it may be, because each person in that situation touches the child and family in a different way, and builds a whole different repertoire, or a whole different relationship than others do. And so the more people that knew about us, the more wet the more ways we would be able to get our name out. I worked a lot with JDRF I still do we work together to help you know reach families there to find special ways to get into different outreach opportunities and webinars to talk about the program and how we can best help others

Scott Benner 14:00
how many families with type one diabetes Did you ever talk to before you realize these people weren't gonna like cut ties with their kids for four hours?

Tricia 14:09
You know, it was it was very, you know, and I knew it in like my heart of hearts. I do and and rightfully so, I mean, you know, blood sugar's could drop, and Spike, kids don't feel good. It's scary. Things don't always respond as quickly. So it was really kind of sitting there and figuring out how are we going to change our parameters, which was amazingly easy because I work with the best people in the world. So to change our parameters that we can make it work for the child for the parent and for the big all together,

Scott Benner 14:43
right? And so you've only been at this for I mean, not not even two years. i My first question is definitely not even even two years. How many kids did you end up finding initially? So

Tricia 14:54
right now, we have 15 kids, that we're in the process of either are on our waiting list or that we're interviewing. And we've got two currently matched. And we have five more in the in the throes of being matched right now, which I know sounds like small numbers, but to start from nothing and to get to here, it's been incredible to meet these children and families and, and to hear their stories and to hear what their needs are. And, and then also to meet the volunteers. On the same token, we've got volunteers waiting. So it probably sounds to you right now. Like, why does she have kids waiting and volunteers waiting. But it's because when we make a match, we make it based off of so many things. So geography is number one, if they're not going to live close enough to each other, they're not going to be able to see each other. The second thing is personality characteristics, we like to really think about the child and the the volunteer to see how we can put them together, that works well, for them have to have the same likes. So there's so many different pieces of the puzzle that really go together to figure out what a match gonna be. And I am super strong on this, I will not budge, we don't make a match unless we feel it's going to be a good one. Because there's no point in getting a little hopes up and a big hopes up for it to fizzle.

Scott Benner 16:21
I'm going to ask a chicken and the egg question here. So what came first? Did you have adults with type one who were like, hey, match me up with a kid with type one? Or did you have kids with type one and you realize they need a different understanding than maybe some other people do?

Tricia 16:36
So First came the kids pretty much we had a couple adults, but First came the kids. Okay. And and it was really just getting to know them thinking about two down the road, what else can we provide for them that can help them throughout their, their life? And throughout going from a young child, the youngest child we enroll is seven, though going from a seven year old, up to a teenager and beyond? And how can we help support them along their journey? Are

Scott Benner 17:05
you seeing children whose care is not stellar at home, meeting up with adults who really understand diabetes and helping them along. So

Tricia 17:16
we see both truthfully, we see children who do have more struggles at home because of their family life. And those kids need big so much to help support them, and to help them understand how important it is to take care of themselves. And how they need to put themselves first and really pay attention to what those doctors and nurses are saying to them. So setting a good example, and modeling good behavior. We have other children that come from homes where like everything is in top notch shape. Like there's no questions. They know how to run their equipment. They know how to Bolus they know how to carb count, they know everything. But they don't have that social network and they feel that isolation of I'm the only one like me here now. That's wonderful. That's the hardest thing to hear. Right there.

Scott Benner 18:14
Have other chapters reached out to you about this yet? I mean, are you the only ones doing this? Or are there other? Yeah,

Tricia 18:20
the only ones? No, we're starting it off. And hopefully, we'll see like the benefits of it. Well, I know we will see the benefits of it. But, you know, hopefully others will adopt it after we get it going.

Scott Benner 18:32
I'm just listening to you. And I mean, I have a you know, a depth of knowledge about how people with diabetes, sometimes think and feel a need and what you're describing basically because this is a weekly thing, right? Like it happens on Saturday, they get together

Tricia 18:47
now, they meet twice a month. They talk more often usually

Scott Benner 18:52
okay, but it's twice it's basically you're you're given a kid, you say four hours, it's a four hour window. Okay, you're basically given a kid to four hour windows a month where they're going to diabetes camp almost.

Tricia 19:06
Yeah, right. Yes, exactly. Yeah. And

Scott Benner 19:09
and instead of waiting all year until summer and then getting together for a week or a weekend or something and being around other people who have diabetes, they have this opportunity to not like have to uproot their lives even not that camps uprooting but it is a little bit like you have to take a break, you have to usually drive somewhere far away. And just to be around another person who doesn't look at their pump and think what does that or does it understands or is bolusing with them for lunch at the same time? It's a I think it's a really special idea who had the initial idea, can we give them credit?

Tricia 19:41
We sure can. So it was one of our board members. And she went for stuff like our when I said to you earlier I work with the best people. We are an organization where an idea comes in and we really like take it and run. So the board member came To us, and said that she really thought this was something needed was diagnosed later in life with type one. And she thought, how incredible would it be to have someone to support me. So I will share with you like in one of our matches the little girls in third grade, and her big is in her 20s. And they went rock climbing together and off, they were going up the wall, and the littles alarm started going off. And so the big said to her, you know, let's take a break. Let's fix what's going on, and then we'll get back to it. And she looked at her and said, but I hate being the only one beeping all the time. And lo and behold, she said that the bigs alarm started beeping as well. So that was like, meant to be I guess, for that very moment. But they finally they have been matched for over eight months. And it took to that moment to get to the point where the first real full blown diabetes discussion happened. Because we don't want to push it down their throat. And like I said earlier, we want them to be comfortable.

Scott Benner 21:07
Yeah, it finally came up and just happened organically. And the kid was amazing. Yeah, it sounds like by the way, I have to ask you How long were you at the organization before you intrinsically knew to say BIG and LITTLE when you were talking about it? I'm assuming it took months?

Tricia 21:20
It took Yeah, no, because I switched back on tear. This is where I'm terrible. I switch back and forth. With the families. I've always been a little but then with other folks, I'm volunteering kids because I want them to understand what I'm talking about. Because as

Scott Benner 21:36
you're doing it, my brain like like rubs against it every time like what is she saying? I'm like biggest adult, I got it, don't worry, I got it big. It's

Tricia 21:42
the volunteer little it's our kid. That's

Scott Benner 21:45
a great example of you know, you don't rush right, you don't get together on day one and go, Hey, diabetes, allow me to, you know, just like you get together and then it comes up naturally because it was going to sounds like they both got active and their blood sugar's fell. And then they can have that conversation like that. And you can tell even through your retelling how much the kid wanted to say that probably like how important it was for them to maybe be able to unburden themselves to somebody who they were like, Oh, this is a person who will actually understand this.

Tricia 22:14
Yeah. And then the parent, the parent of the little, was so grateful that she opened up and said that, that she got to that point where she could say those words and make it it and just express herself, I guess, express herself in a way where someone else going through the same thing understands. Now these two are like the Bobbsey Twins, and they set their screen their background screen. So they have the same pictures when they're out. And they do this and they do that together. But it's more from this friendship. That obviously is the beginning of the relationship and how the relationship starts into a support system. For diabetes.

Scott Benner 22:59
It's really something, how much are you figuring out as you go? Like, I'm sure with 15 kids who perhaps hasn't happened yet. But eventually you're gonna identify a child with an eating disorder? Like, are you able to like do you have services in mind already, where to guide people to? What about when you meet somebody who can't afford, I don't know, insulin, or supplies, or what happens when you meet people who are just like, you know, a onesies are, are incredibly high, and they don't know what to do. And it's more than just the the big little like, setup can help with do you have? Sure, yeah. What are you doing for that?

Tricia 23:38
So we do work a lot with different wraparound services, and the local hospitals as well. We've really partnered with them, especially, I would say Children's Hospital has been incredible to partner with, because we can share information back and forth. So the first thing you know, on enrollment, they say release forum so that we can talk to people, which helps us dramatically. So if a situation comes up, that we can go back and discuss it, we have had the a one C thing where a onesies are out of control. And that's something the hospital works directly on with them. But a big can help to influence why it's so important to get that number down with other kids. They've seen just with the blood sugar's all over the place, and there's never just some kind of commonality and they can't pinpoint what's making it spike. And we know it's because the kids are bolusing or they're not taking care of themselves properly. So the big they're helping them to understand why it's so important. So if we know like when we do this interview with the little we do it with their parent or guardian and the child themselves, the parent or guardian we meet over zoom. It's a great conversation. We do it when the kids aren't around. So the parent guardian can say whatever they need to say and get it out. And then we go in and we meet with a child face to face.

Scott Benner 25:07
A lot of things being accomplished here. Yeah,

Tricia 25:09
there's it's like, it's really comprehensive program very comprehensive and, and when we meet with a kid have to face are a little I'm going to switch my words here we go. When we meet with our littles, we asked them a lot of questions, and especially around their care for diabetes, finding out exactly where their comfort level is. And I mean, I'm sure this is not a surprise to you. But so many kids report back on bullying. One girl told me her class called her the weird robot. And they didn't want to sit next to her because of her robot device. I mean, it's just working through these kind of boundaries. And these breakthroughs, the

Scott Benner 25:53
most criminal thing there is that kids burn is terrible. The weird robot, like what kind of a dig is that? It's just not well thought out. It's it's low level, where's

Tricia 26:01
the teacher in that situation, too. If it's

Scott Benner 26:05
subpar bullying at best, I don't like it. But it

Tricia 26:08
is bullying. It's 100%. But it's not even. It's bullying.

Scott Benner 26:12
I have a question that I want to I exist in my mind, and I want to get through it like so. I have to admit, when you reached out to me, I thought Jewish Big Brothers Big Sisters. I didn't know that. There were I just thought there was Big Brothers Big Sisters. But you're not like if if I have a kid in the greater Boston area, and they're not Jewish, you help them as well. Right? Like it's not thank you

Tricia 26:35
for asking that. I did not say that. At first, we serve everybody. So we serve even though we are Jewish, Big Brothers, Big Sisters. We are an affiliate of the Big Brother, Big Sister, Association of America. We serve everyone regardless of race, religion, ethnicity, identity, orientation, etc. If you are in need of a service, you come to us and we will start working with you. Similar

Scott Benner 27:02
to like when you hear Catholic Charities, for example. Right? That's an organization helps everybody it's not just it's the way it's run. i Okay, how long has it been in existence? So

Tricia 27:12
Jewish Big Brothers Big Sisters has been around for? I think we're up to 104 years right now. Okay, well, long standing prominent agency. Yeah.

Scott Benner 27:26
Well, so what made you want to come on the podcast to get the word out, wanted

Tricia 27:29
to spread the word about what we're doing. And for people to reach out if they have questions, or if they have ideas, I wanted to just share the service that's out there for people in the greater Boston area. And I will say we serve over 90 cities and towns so from like, out Western Mass a little bit all the way up through the north shore in South Shore. So we go everywhere, everywhere.

Scott Benner 27:55
It's freezing cold in the wintertime. I know where you're talking about. Yeah,

Tricia 27:59
it's a little chilly today here, but we don't have snow yet. So we'll keep it that way.

Scott Benner 28:05
Let's kind of take a second here. Can I give the phone number from the website? You sure can. Yes. 781-516-2090. Or it's j, b, b? b s.org. Is that correct?

Tricia 28:20
Yeah. Okay. Yeah. And right from our website? No,

Scott Benner 28:24
no, no, no, J, three B's and s.org. And right from your website, what you can

Tricia 28:29
find the type one diabetes program, there's information to enroll, there's a direct link that they'll get to me. And then we'll be able to set them up and get them going.

Scott Benner 28:39
And there's no cost. Is that correct? For the this is a totally free service.

Tricia 28:43
Yep. There's no cost to the child or family

Scott Benner 28:47
at all. And the adults are donating their time. They're

Tricia 28:50
donating their time. And truthfully, they're also donating their money and paying for any outings. For children.

Scott Benner 28:58
I gotcha. So we I take I go rock climbing and there's a charge to get into the something. It's It's on me as the person who's setting up the excursion. Do the big Yeah, gotcha. All right. Well, that all makes sense. Yeah. Because geez, if you were paying for it, I'm like, Where would I go? Maybe get a nice meal. Get a steak. We'll start slow in the morning. Get an amen.

Tricia 29:18
We'll keep going all day. But yeah, no, no. Sorry. Sorry. Diverse. No,

Scott Benner 29:23
I didn't. I didn't imagine any differently. Actually, I just I just wanted to make sure people understood that they'd be donating. So you're looking to hear from children who are looking to be paired up and you're looking for adults who'd like to donate their time as well.

Tricia 29:36
You got I'm looking for a ball. Okay. Well,

Scott Benner 29:39
I I'm gonna just say this. I feel personally responsible now to make sure people reach out to you. So if you're listening and you fit into one of these buckets, like, give it a try if you're interested, you know, I mean, what could it hurt to reach out and talk to Trisha a little bit and, and get some more information? Right.

Tricia 29:53
Right. I mean, this is it's really like, truthfully, people will do People involved in our program will tell you that this is a gift and, and we are only here to help serve people and to make things better for kids so that they're more comfortable in their own skin, and that they feel good about living with a chronic illness. The one thing I said when I first applied to work at Jewish Big Brothers Big Sisters, was that I never want a child to feel like their illness owns them. I want the child to own their illness. That's wonderful. And I feel by giving them a mentor. It's something that can really help to teach them how to take role, and how to feel good about what's going on in their situations, and feel as though they can live with type one a successful life which we know is possible. And to make it through all the different ages and stages with someone by your side.

Scott Benner 30:51
Can I ask you, how has your understanding of type one changed over the last year,

Tricia 30:57
I have learned so much, I can't even believe so I knew what type one was, I knew that it wasn't anything like type, oh, you know, all of those things. But one just learning from hearing from children, the misconceptions that they go through, that's been eye opening, but then to learning about bolusing learning about closed loop systems, learning about all these different systems that kids have kids that are on multiple daily injections first versus on a loop system, it's been really interesting to me to see the paradigm shift and the learning curve for myself going through this. And I feel like they can actually have a conversation with a parent of a child with type one. And not be clueless and understand. I mean, do I understand what it's like to wake up in the middle of the night? Because your child's blood sugar's crashing? No, I do not have that in my back pocket. But I do know what it's like to be a parent, I have two teenage girls. I know what it's like to work with children with chronic illnesses. And I know what it's like to hear a parent going through a traumatic episode and being there to support them through that time.

Scott Benner 32:10
Have you had an experience yet where you thought, Oh, I wish I could take this knowledge back with me. 15 years ago when I was working in hospitals?

Tricia 32:19
Yes, I wish we could have done a support group then for kids like this. I wish I could have set something up. That would have reached children when they're in the hospital differently for type one. And given them more tools to go back to school with

Scott Benner 32:35
Yeah, yeah. So if somebody's listening to this, whose kid is already maybe part of the Big Brothers Big Sisters program in another place, you know, outside of Boston? Yeah. You're comfortable with them, asking their chapter to reach to you and you'd be happy to explain to them how you got this setup? What's working? What didn't like give them a roadmap?

Tricia 32:58
100% Of course, right? Like we all have to work together. There's there's no I in team will go for the cliche. And we need to you know, everyone's here. If your child is involved in a Big Brother, Big Sister program. They're in it because you knew they have a need for something. Yeah. So why not just expand that lead?

Scott Benner 33:18
That's fantastic. It really is. It's very kind that you'd spend the time to explain to somebody else and get it rolling in other places, too, if they were interested. I think we've covered everything really well. I want to make sure you feel that way. And then I have one last question for you. So first of all, is there anything we haven't said that we should have that I missed? No,

Tricia 33:36
no, we've got it all. Great. I we've hit all my little bullet points here.

Scott Benner 33:40
So here's my last question. How come you're not like let's go park the car on the yacht? How come you don't sound like that? Do you? Not from from New York. He's gonna say

Tricia 33:52
no, no, but my youngest daughter Sure. Does. She parks? She does. She has no RS whatsoever. No, no. I'm from New York.

Scott Benner 34:04
Did you go to the area for school and just stay?

Tricia 34:06
I did. I did. I came here because I knew I wanted to be a child life specialist. I came here to go to Wheelock College. During that time, I wrote a grant with a physician that I worked with to get a program started in surgery and trauma. And then from there, I met my husband who's here and that's how I ended up saying she it's

Scott Benner 34:27
always a boy. I every time I interview somebody I'm like, how did you end up in Alaska and then the story starts and a boy and then by the way, that Alaska story, which I'm not going to bother you with is in a past episode. The boy disappeared. She stayed in Alaska, and I was like,

Tricia 34:42
Oh my goodness. My guys still around.

Scott Benner 34:48
Oh my god. Okay. Well, I find AJ please, I hear some stories. I genuinely appreciate you taking the time. I really appreciate you guys reaching out actually. There are I will I'll tell you something that's backroom that you would know, a lot of people reach out to me to get their thing out in the world. And most some, there are times where I'm like, um, you know, it's business related or something. I'm like, I'm not here to like, you know, shill for your business. And I don't do stuff like that. But boy, when I got your, your initial note, I think I misunderstood it at first. And then you guys were persistent, which I appreciate it. Because then when I really dug into it, I was like, this is something I'd like to really get behind. So I appreciate the effort that you put into getting on the podcast. And by the way, this is not an this is not an invitation for other people who I've said no to, to come back. And

Tricia 35:37
I have to say, Tonya, my ally, who first additionally reached out to you, she is just above and beyond. And she's our Director of Recruitment and engagement. And she's the one that helps me find our bigs. And without her like we work hand in hand together. Yeah. Without her, I wouldn't be able to do this. So I

Scott Benner 35:57
have one last question. Sorry. I know I said, I had one last question that I have been asked. You can have, like 10. Last question. How's that? What about a scenario like me, like, I'm not offering to come to Boston, but I'm just using me as an example. I do not have type one diabetes. But some people might argue that I might make a fantastic mentor for somebody with type one diabetes, like So could a parent of a child with type one who's maybe kids have kind of flown the coop or I guess, gone to college? Like, could they be a big for a young person with type one? Like, are there worlds where you match type ones with non type ones that still have a lot of information about diabetes? You ever thought about that one? How can

Tricia 36:34
I tell you? I don't know. I honestly I'm going to be honest. I don't know. We haven't explored that avenue yet. Well, that's

Scott Benner 36:40
there's my little bit for you. Like maybe that would be alright. Yeah. Take that back to the table. Yeah, get some like, you know, empty nests, mom with a ton of energy. For at least one of those kids, they got all that energy. They don't know what to do with. Trust me, they know a ton about diabetes, and they might not have anything to do with it anymore. Anyway, I don't know. Maybe it wouldn't work out. Or maybe it doesn't fulfill the exact calling of the idea. I mean, as I think about it, maybe it doesn't, but I don't know, I just want to throw it out there.

Tricia 37:06
The reason why I was like I don't want I never a straight off no person. But the one thing I can think of is like there is so much comfort in a child wearing a blood glucose monitor, seeing an adult wearing it as well. There's this kind of bond that happens immediately. I see it

Scott Benner 37:28
very well may not be a good fit for the overall idea. It just occurred to me and I wanted to ask, so thank

Tricia 37:34
you as support for the parents, the other parents that have younger kids to talk to a parent who's gone through all of

Scott Benner 37:42
the show, you're gonna make more work for yourself a big one big program, a parent, a parents of kids with type one program.

Tricia 37:49
It who knows you never know. I mean, look at I just said to you, I never say no right away.

Scott Benner 37:55
Well, listen, that's, that's also not a bad. I mean, look, there might be other places already set up to cover those things. But what I'm thinking is if you have 15 kids who are in your program, let's just pretend it was 16. Now you have eight parents and eight parents who you could maybe put together that might not be difficult, and it might be valuable and needed and desired by those people. I listen, I have my Facebook group adds 150 new people every four days. Wow, those are people who do not have community and generally speaking are looking for community and support. So I think even that's a good idea. You could get into all kinds of side hustles here. I know they're not called side hustles but you're doing it for an organization. We

Tricia 38:40
could get all we could get all different kinds of programs. Yeah, but you could do your from Jersey now you can do your side hustle mob program.

Scott Benner 38:54
I have side hustles I'm all over the place trying to stay stay above water. But okay. Well, Trisha, this was really nice to you to do. Give me all the information again. What's the website? And one more time?

Tricia 39:05
Sure. So our website is www.jbbs.org. And you know what you gave a telephone number you gave our direct line phone number? I don't know is that I'm a terrible person. I don't know where to get my phone number off the top of my head.

Scott Benner 39:27
I don't think you're a terrible person. 781-516-2090

Tricia 39:32
There you go. All right. That's why we work together see teamwork already.

Scott Benner 39:36
She's like, I know my phone number. There are other ones.

Tricia 39:41
Well, right. That's I know my cell but anyways,

Scott Benner 39:45
asked me my kids cell phone numbers. I have no idea. No, I

Tricia 39:49
know. You're gonna say to me, excuse me. I have to put their name and with that contact and I was like,

Scott Benner 39:53
I have absolutely no idea. All right. I really do appreciate you doing this. Can you hold on one second for me?

Tricia 39:58
Absolutely. Absolutely. A

Scott Benner 40:07
terrific was that make sure to check them out if you're interested in helping. I'd like to thank ag one for sponsoring this episode of The Juicebox Podcast and remind you that with your first order, you're gonna get a free welcome kit. Five free travel packs in a year supply of vitamin D. That's at AG one.com/juice box. A huge thanks to the contour next gen blood glucose meter for sponsoring this episode of The Juicebox Podcast. Learn more and get started today at contour next one.com/juicebox And here's a little bonus for you for listening all the way till the end. In the Pro Tip series that runs between Episode 1001 1025 I think there are ads from contour with a link to a free meter. You have to be a US resident and it's only while supplies last but there are supplies left at this moment. So head over there. Listen to the diabetes Pro Tip series that begins at episode 1000. Get that link and get yourself a free contour next gen meter while supplies last US residents only the episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

#1109 Type 3c Diabetes

Lara has type 3c diabetes. She lost her pancreas, spleen, gall bladder and part of her stomach during a pancreatic tumor surgery.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 1109 of the Juicebox Podcast.

46 year old Laura has typed three C diabetes. She lost her pancreas, spleen gallbladder and part of her stomach during a pancreatic tumor surgery, Laura found the podcast while she was looking for help with her new diabetes. She found episode 279 and has been a listener ever since. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year's supply of vitamin D. Drink ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout that's juice box at checkout to save 40% at cozy earth.com. If you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show. This episode of The Juicebox Podcast is sponsored by the continuous glucose monitor that my daughter wears the Dexcom G seven Dex comm.com/juice box Get started today using this link. And you'll not only be doing something great for yourself, you'll be supporting the Juicebox Podcast. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn. Find out more at G voc glucagon.com. Forward slash juicebox My

Lara 2:02
name is Laura. I am Canadian. I live in Canada in British Columbia about an hour outside of Vancouver. I am 46 years old. I'm married and have one daughter who is 17 graduating high school this year and we couldn't be more excited about that. Nice. And I'm currently in battle with pancreatic cancer.

Scott Benner 2:25
Not as nice. Okay. All right. Okay, so my first question is before we started recording, because of the spelling of your name, I said is it Laura? And you said yes. But then because of your Canadian accent I thought you said Laura so now I don't know what to do.

Lara 2:39
You know what? It's a okay by me. i It's pronounced Laura. I get Lera Laura, it doesn't bother me whatsoever.

Scott Benner 2:47
But I want to get it right. It's lar I'm leaning on the far too much. Right, Laura? Yeah. So Laura, did I get it?

Lara 2:57
Got it?

Scott Benner 3:01
Well, I was gonna curse right off the bat and say, that sucks. But when did you learn about the cancer?

Lara 3:08
Well, it was March and NetBackup. A little bit because it all started in March of 2021. I was two weeks out of moving we had a major move underway to move to acreage in a much larger house. And two weeks before our giant move. I ended up in the hospital with pancreatitis, which was unusual for someone of my age and my spent seven days in the hospital being treated for pancreatitis. I'd had all of the CTS, the MRIs, everything came out perfectly clear, clear pancreas. They did find in July, when I had the secondary scan an abnormality in a bile duct. And at that point, they told me that they were going to monitor it and I might need to have my gallbladder out. Okay,

Scott Benner 4:01
so can I ask first let me let me let me step you through it. What are the symptoms that led you in the hospital initially,

Lara 4:10
I had a terrible, terrible back pain. So it was radiating in the middle of the night from my mid back through my shoulder blades, severe nausea and oily stool, domino pain and just a general feeling of unwell. But actually, by the time I ended up in the hospital, my symptoms had recovered, but my bloodwork was still showing highlight paste numbers and inflammation markers were up. So the only way to fix that is to put you on IV drip only and no food for seven

Scott Benner 4:51
days. Okay, lipase, is that just an indicator for the pancreas? Is that right?

Lara 4:57
That's right. And by Those numbers are high

Scott Benner 5:01
oily stools never something you want. I don't care for what reason no,

Lara 5:05
but I was on a keto diet at the time too. So I kind of thought at the same time maybe that was all related but it wasn't something and initially I didn't have any pain that started later. So I didn't really think much of it to be honest with you, it kind of came and went. And in hindsight, really there the warning signs were there from long ago and that's kind of what I want to bring attention to people that you really in tune with their body.

Scott Benner 5:34
If you take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you storage evoke hypo pen and how to use it. They need to know how to use Chivo Capo pen before an emergency situation happens. Learn more about why G voc hypo pen is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit G voc glucagon.com/risk For safety information. Yeah, now um, my my I'm doing a little reading right here. So lipase does not correlate to pain, in case you're wondering. It doesn't end it. There is a concern here is is lipase attached doesn't mean diabetes is, you know, for example. And it does say that lipase elevation shortly precedes the onset of type one. But that's probably a thing. Nobody knows when it's happening. I would imagine. That's right,

Lara 7:16
yeah. And it's not something that they normally test for unless you're having issues. So until you're already at the point, we're having some symptoms and some issues. That's when it looks when they look for it. And it was actually by chance, my doctor thought, oh, I shouldn't check for this level, because he had also had a patient recently just before me with the same issues. So and that was her issue. Yeah,

Scott Benner 7:42
I was wondering how I got to it so quickly. Honestly, plus, and I don't mean to be pejorative, but you're in Canada. So you it's a province coin flip whether you get good health care or not right.

Lara 7:53
Is that ever the truth? And I can tell you some nightmare stories that I've been through recently, actually, about that. But in this case, in the very beginning stages, I was treated very well. They were on top of it right away. I had the proper scans and everything seemed to be going along really well.

Scott Benner 8:15
But yeah, so So what was the treat, what was the initial treatment?

Lara 8:19
The initial treatment for me was hospitalization, clear fluids. After a few days, I was on only IV fluids, because they're they put you on digestive rest is really the only way to get past that. And then by the time I left the hospital, I thought it was all good to go. Yeah, sure. We'll check and see if maybe the gallbladder needs out later, but I felt totally fine. Okay.

Scott Benner 8:47
Was the gallbladder showing any indication? Or was that just the thing they said we have to watch out for?

Lara 8:53
Gallbladder and pancreatitis go together very often. And because they found that abnormality in the bile duct, they were watching that. And that might have been the trigger where they would have pulled the gallbladder out if that hadn't resolved itself.

Scott Benner 9:10
And my last question is when they when you said they scanned your pancreas was that ultrasound?

Lara 9:14
It was CT scan CT. Okay. Thank you. Sorry,

Scott Benner 9:18
God, keep you you left. You thought you were good to go. I'm sorry. Keep going.

Lara 9:22
And then so they said come back in six months. And so that put it around February my birthday of 2022. And I was feeling fine. Well, they scheduled me for the follow up CT scan and I was expecting at the very worst that I would have to have gallbladder surgery, no big deal. But I got a phone call after that initial scan in February of 2020 to two days later to come back in and I knew at that point that I was in trouble. So at the second scan, they found a one Point four millimeter mass on my pancreas. It was very, very small, very, very early, it had zero spread, there was no indication of any real seriousness at that point. They thought no big deal, we can get in there really quick get it out without having any spread. And I didn't have any symptoms. They thought that this would be a curable thing for me.

Scott Benner 10:28
For clarity, you said it once, but I want to make sure I repeat it, the pain was gone, right?

Lara 10:32
pain was gone, I was totally fine. I was actually very annoyed that I had to go in for this scan. Because I had to take time out to do it. And it was a contrast dye one, which I didn't really like doing. And I thought to myself, well, I was fine. So why am I doing this? But I did my due diligence. And thank God I did because it was a bad thing.

Scott Benner 10:58
Before we move forward. And you tell me about you know what they what they decided to do? You mentioned this, but I want to dig into it for a second. You said hindsight like I don't know if you use those words, but I thought like were their hindsight symptoms were even for years before did you have issues that you ignored or stuff that you'd like, look back and go, Oh, I think this was a thing.

Lara 11:21
The only thing I would say that I should have paid more attention to was the symptoms from the pancreatitis, which was the oily stool, and I should have been on top of that. But with the keto diet, I was I thought, maybe I'm just not digesting Well, which clearly wasn't because there was issues there. And it was completely unrelated to the keto diet. But that also could have been something that triggered it as well.

Scott Benner 11:51
How long before and for how long? Did that occur? Before you got the lower back pain shooting to your shoulders? I

Lara 11:58
would say several months, but not continually off and on not every day. So I didn't really think anything of it. And that was silly on my part.

Scott Benner 12:09
You know, honestly, probably not. You know what I mean? Like, because for every person who can say, I ignored this and it turned into cancer. There's a there's a million people, you know what I mean? Who are like like, nobody guess what, everything was fine. So I mean, don't beat yourself. Yes, that is the case. Yes. You don't beat yourself up. But but at the same time, it's it's great to know what to look for. Also, I think it helps highlight that your pancreas has something to do with your digestion and a lot of people don't know that. So huge portion. Yeah, okay. So they see this this little mass and they are going to try to take it out. So what are next steps.

Lara 12:46
So the next steps are PET scan and biopsy. I had the referral to a hippo, that hepatic biliary oncologist surgeon who was confident that this was going to be a curable thing for me, given that it was so small. So PET scan showed just this very same, actually, it showed the same tumor very small. It also led up my thyroid, which I had a thyroid nodule, they said that was going to be okay, they would do a fine needle biopsy on that, but it would be unrelated to what I was dealing with with pancreatic cancer. The biopsy was done, and it confirmed that we were dealing with invasive ductal adenocarcinoma, which is the worst kind of pancreatic cancer to have. It spreads quickly. And it's quite aggressive. But we were still confident that with the surgery, and then six months of chemo, after the surgery was done, that I would have the cure that we were looking for. So I went in very, very positive and confident that I was in good hands. And that things would be a okay. And I do want to say that this was all extra scary for me because 10 years ago, we lost my uncle to pancreatic cancer. Seven really? Yes.

Scott Benner 14:13
Yeah, I have to tell you, I don't pray. I don't know if people know this. I haven't said this in a while. But when I sit down to record, generally speaking, I don't really know what I'm doing. I don't like I don't pre plan my conversations. And I don't really look at my calendar. So you know, some people really want to know what the weather is before they go outside. I'm more of a wander outside and see what the weather's like person. And, and I do that with this too. And I just want to tell you upfront, I don't want to slow you down. But if I pause, I lost my mom to cancer in the last year. I'm having a more difficult time with this than I thought I would. So don't I don't I don't want to stop you but we're definitely having this conversation. But at some point, I'm gonna cry today just so you know. I like let's just put,

Lara 15:01
and I likely will to a okay. Okay,

Scott Benner 15:04
good. Good as long as we're both expected. Yes. Yeah, you just it just it took me by surprise a second ago. I was like, I don't feel right. Why do I not feel right?

Lara 15:12
I guess Yeah.

Scott Benner 15:14
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Lara 16:30
I really did because by all stretches of the imagination, this was found by accident, it was found so early, it was very small, almost at the point where it wouldn't even be something that would be detected, it has to be a certain size before it can be detected on scans, the cells can be caught and PET scan just floating around because they light up like they feed it they feed them sugar and cancer cells light up like Christmas tree. But the actual tumors need to be big enough to be able to be found. So this was just at the point it was so small surgery, there was going to be a distal pancreatectomy which means they would have taken half of the pancreas and my spleen. Because those things are connected. And by all searches of the imagination, they told me that the pancreas that was left over was going to take over the insulin production. And I wouldn't be a diabetic I would be fully cured and just had to get through this hard road for well, six months surgery, well recovery and then six months of chemo. So they started the chemo six months after the full surgery.

Scott Benner 17:43
So you thought I'm getting a surgery, not much is gonna change other than I'm not gonna have cancer anymore. And yeah, okay, so when did they tell you? That's not what happened? Is it like, right when you woke up? Or how does that go?

Lara 17:56
My surgery was scheduled for March 28 of 2022. And on the 25th of March, I had my last CT scan before going into surgery. And I never saw the results of that. And while I was being wheeled into surgery from the little holding room, after I'd been laying there crying my eyes out scared as scared could be. I met the surgeon for the first time face to face because this was still times where they were doing phone appointments. And I hadn't seen his face events. So there he stood with me and told me that the tumor had grown in that six week timeframe from one CT scan to the next from 1.4 millimeters to four and a half centimeters and it had taken over the entire pancreas.

Scott Benner 18:49
I'm not good with the metric system. But that sounds like a significant increase.

Lara 18:53
Significant is right. So it went from one tiny little dog and they're taking over the whole pancreas. And at that point, he said there still haven't been any spread. But the likelihood that I was going to lose the entire pancreas was was pretty probable.

Scott Benner 19:14
Yeah. For people who like me who don't know the, the metric system. That's about a 40 times gross or growth of, of the mass. Yeah, it grew by like 40 times its size in six weeks. That's right. Yeah, that's

Lara 19:29
the one thing invasive and aggressive. That it that it is. So the importance of the early detection was astronomically important. I can't even say because at this point, the surgery, the whole pancreas could still come out. The cancer hadn't still spread at that point. So there was a silver lining to that although I was completely unprepared for what what I was going to find And when I woke up,

Scott Benner 20:01
so yeah, it's like, it's like the opposite of Christmas, you got two gifts instead of one. And usually they were like, hey, guess what? You have cancer and diabetes. Like I didn't have either these things five minutes ago. What the hell and so you're coming out of a surgery as a type one, basically, it's type three, right? It's what they call it, type three, C, three, C, type three, saying, you're coming out of surgery is a type A type three, C, and somebody's telling you, hey, there's way more cancer and then than we thought, and that's all out of nowhere from. And so for all the crying you did before, how does it you do a little more after I imagined. So

Lara 20:44
the surgery was nine hours when I was supposed to be like three and a half. So that alone was a huge undertaking. And I when I got to the recovery room, it was very late. And that's when they told me that I had lost my whole pancreas. And I also awoke to nurses in sheer panic, because they were unable to control my blood sugar. So they kept me in the recovery room because they're got me on this point, insulin drip, which has to be done with one to one care. And they're worried about DKA at this point, and I don't even know what DKA is.

Scott Benner 21:26
You're not even awake. But you definitely don't know what it is right? Also, I take your point about the time. I remember, we dropped my mom at about eight or nine in the morning at the hospital during COVID. We couldn't even go with my like 70 At that point, 78 year old mother, I think at 78 or 79, we basically wheeled her through the front door gave her a good running, pushing was like good luck, and then had to leave, you know, like because they wouldn't even let you come in with her. And that was frightening in and of itself. But the doctor said, I'll call like, my number was the one he was going to call after the surgery was over. And I'm not lying to you. It was like 730 at night when he finally called me. And he and he called the say, my assistant basically, is still closing your mom up, but I'm done now. And I was like, Wait, this this was like I just figured the schedule got messed up, or they lost her like seriously? Yeah, because I really, really did just kind of run through the door with the wheelchair. And we're like, alright, mom, like, well, good luck. Yeah. And like I said, maybe she's just sitting it all somewhere, you know, but, but instead, it took the better part of the day to do what they ended up having to do for the same reason, because they got there. And they were like, wow, there's more here than we expected. So my

Lara 22:44
family was completely unprepared because they were waiting at the hospital. And at some point, they had to go home. And I remember them, my husband saying, Yeah, we got the phone call. We were almost home. And it was way late at night. And the surgeon called and told him but I still hadn't spoken or seen any of my family and listening to these nurses in panic about these things that I don't know

Scott Benner 23:11
about. They're like, hey, we can't get our blood sugar under control. And you're like, Well, that wasn't part of why I was here.

Lara 23:16
Right? Yeah. And I don't even know what numbers mean at this point. Right? So my sugars were at 25. And I don't know what,

Scott Benner 23:27
oh, I could tell you, but only after I get a conversion chart on my website. I

Lara 23:32
have a conversion chart saved on my phone from the Juicebox Podcast.

Scott Benner 23:35
Thank you 20 Oh my god. 25 Wait, are you serious? Yep. Oh, that's a for like a 450 blood sugar. Yeah, yeah. Okay, for hours

Lara 23:45
for hours and hours and hours. And once they got them finally back down, I think it was about 130 in the morning is finally when I left recovery and then went up to the ward, but I had had asked to call my mom because I just wanted my mom I just as you do. I just needed her and so I had the phone call with her. completely out of it totally confused and very angry. Yeah,

Scott Benner 24:14
and angry for a Canadian. What does that even mean? Were you saying dharna

Lara 24:20
Oh, I can get super angry.

Scott Benner 24:23
I always tell people you know you don't know about Canadian So people always say there's there's not as much gun violence in Canada. I was like, but they love to stab each other. So don't go give him too much credit.

Lara 24:31
I also hear we're very squarey

Scott Benner 24:37
Well, I know for sure in bars. You're very savvy. So

Lara 24:42
because we can think guns here right? I

Scott Benner 24:44
assume that's why it's happening. Yes. So while you reached through your mom, like you skipped right over? I don't mean this in a bad way. I honestly don't but when you thought I need help you didn't go to your husband. You went to your mother.

Lara 24:59
I went to my mom. And I always do especially with the medical stuff because she she understands more my husband's a little bit more of a stress case when it comes to all of these things. And I knew that he had my daughter with him and I kind of didn't want to get her involved at this point before I'd even figured things out. And I think you always just ride I do miss reach for my mom. I

Scott Benner 25:25
just think that this highlights a mother's instinct on your part. Because if I was in trouble, I would drag everybody into my heart immediately. Be like, I can't believe you people left. Like I need everyone back here. I want to visual there should be candles, crying, crying shifts. So every time I look up, I see somebody said

Lara 25:47
I went total opposite. I went into like recluse mode. I didn't want to see anybody at all.

Scott Benner 25:56
Did you think you were going to die? Is that? When does that occur to you the first time.

Lara 26:01
The first time it occurred to me that I might die was when I first got the first report with the that I had pancreatic cancer because I'm in the Google tells you no one comes out of it. Yeah. And so I tried really hard. And I did, probably to my dismay, actually, in the end, I stayed off the Google and I stayed off all of the Facebook groups for praying pancreatic cancer, because it was all nothing but doom and gloom. And I wanted to stay positive because I knew mindset had something to do with it. And I have felt that I was in good hands and that I should trust the people that were dealing with me in my situation, and not the random strangers that have had a myriad of different experiences, some good, some terrible. And I didn't know where I was going to fit into all of that. So I didn't do a whole lot.

Scott Benner 26:57
You don't want to jump into somebody else's story and put it on yourself when maybe you're not in the same position they're in. Yeah.

Lara 27:03
Especially since so many of those stories are not good. It was not a safe place when I was learning a whole new life at the same time.

Scott Benner 27:14
Yeah, you make yourself crazy, I would imagine. Totally. Yeah. So okay, so you're, you're kind of locked down your you got your mom, which does your mom say anything valuable? Or is it all just a lot of love. It's

Lara 27:25
just a lot of love. Because at this point, she didn't know what was going to be valuable to say, other than she was it was going to be okay, and that she would be there every step of the way, which she has been holding my hand every step of the way along this whole journey. She's not left my side, and has been an amazing support for all of us. My family included, so we couldn't have done any of this without her.

Scott Benner 27:53
Did she? Get off the phone with you? And latch up the dogs take a big cut a whale blubber and head right to you on her sled? Or how did she stay where she was? That's how you guys get around. Right?

Lara 28:07
That's right. So she was there early the next morning. So at one in the morning, I ended up back in my room, our room, which was nice. I had a private room, which doesn't happen very often here in Canada, they're usually a four bed ward room. And given the nature of what I was going through, I appreciated that time where I was just alone, and not having other patients in the room. But she was there. And you almost had to kick her out to leave at the end of the day. So I spent nine full days in the hospital recovering from the surgery. The next day after the surgery they'd sent in the first endocrinologist that I was to me and I sent her out the door as fast as she came in. Because she knew immediately she wasn't going to be a fit for me. How come? She came in. So bubbly and squealing with her hair and a high ponytail and she's talking to me like life is good. We have insulin and she was so trying to be this bubbly positive person and I was just I'm like I like the facts. I don't need no. Like lucky stuff. Tell me where it is that like, tell me what I need to know what I need to do.

Scott Benner 29:26
We might get along really well because yeah, I like the most despicable part of her was her high ponytail.

Lara 29:35
I just couldn't I couldn't deal with her. And she just she came in she gave me a meter. She gave me and left nurses a basic lard pen. That's what that's what how that went down.

Scott Benner 29:48
You know what I was really surprised by earlier in your story. You can't be the first person to go into surgery and come out without a pancreas. Now why were the nurses so thrown off by it in postop because obviously you're not a person Using Basal insulin when you went in, so you have no insulin at all, like your body's like devoid of insulin. And so I'm not a doctor, I just want to be clear. And if you took a person and handed them to me and said, Hey, I just took this person's pancreas out, my brain would go, Well, we have to get Basal insulin going right now. I don't know why that's difficult. Like,

Lara 30:22
I don't either, but I do know that they don't do these surgeries very often. And I am one of the few that it does happen. Because normally, these things are found too late for this to make a difference. So

Scott Benner 30:36
they don't do the removal because it's over by the before it starts.

Lara 30:39
That's right. Yeah. So that part I get, but when you're when you are in that one to one care recovery room, I mean, surely you had diabetics through there before. You know how to deal with the one to one and IV drip of insulin, but they were shocked and didn't know

Scott Benner 31:00
what to do this endo that comes and sees you after the surgery. She wasn't meeting your energy. Let's just say that. Yeah, because your energy was, hey, I just found out I have way more. I had way more cancer than I thought I did. And now I have diabetes on top of that. And she came in like Mr. Rogers, and you were like, No, we're not doing this. Yes. Right. Okay. I understand, by the way. So what ends up happening then, like you got your Basal guard pen, but what else did you get out of that?

Lara 31:27
So they never actually, this, this is this is I know, you're going to find this shocking. And I've heard because I listened to the diet, the diagnosis stories, on the Juicebox Podcast, they would come in at night and give me a shot of basically or they didn't explain to me what that was. And then with my meals as I could eat, because there was a long period of time where I had just really any difficulty because they remove part of my stomach as well. So this surgery comes with gallbladder spleen removal part of your stomach, and your pancreas. So they've reconnected at all

Scott Benner 32:08
why the stomach was there, cancer there.

Lara 32:10
There wasn't but just how the digestive tract works. They have to when they remove, yeah, the stomach smaller. Okay.

Scott Benner 32:19
The Basal cars, Basal cars, let Lantis so that's your so they were giving you slow acting at night, but not telling you what it was. They didn't say this is Basal insulin or nothing. Well, you know, you did scare the lady away. Who might have told you?

Lara 32:35
Well, she didn't. She came in. And she wasn't even really prepared to give me any education or anything. At that point. I think they thought maybe too early. But obviously, they didn't know me. Because I need to be armed with the facts. And I need to know what it is that I'm doing and how how, like, how is this going to work? Like, you can't just come and shoot me up with something and then expect me to know what it is when this hasn't been a part of my life and it and I actually, truth be told only no one other type one diabetic in my life, so yeah, I didn't know. No,

Scott Benner 33:10
yeah, you don't you have no idea. You say nine days in the hospital after that? Yep, nine days. Okay. Do you have any idea what you're doing diabetes related by the time you leave even? One

Lara 33:24
night, I'm going to tell you this, because what no one told me anything about diabetes, they would come in, they would give me when I would eat, they would give me a shot of insulin with my meal, they would give me that basic bar at night. But they didn't explain to me like how much or what would happen or whatever. And I remember one night not knowing, not knowing anything, and I didn't feel well. And if you know me, you have to I have to be near death to press that nurse call button because I just can't stand it. And it was in the middle of the night and I thought I'm gonna annoy all these people. At this point. I was in a four bedroom. And I was sweating and shaking. And I felt like I was running out of time. I press the call button. And of course, I had a low blood sugar. But I didn't know this was gonna happen to me. They didn't tell me. They said oh, you have low blood sugar. drink this juice. Okay, but then they told me this would keep happening either.

Scott Benner 34:26
You just thought like, oh, they probably just got it wrong. This one time this will never happened again. Yeah, they didn't

Lara 34:31
tell me this was going to be a regular almost daily occurrence for me.

Scott Benner 34:34
It's so difficult to be prepared for the first time. Anything happens and this is gonna sound disconnected for a second but I have a fairly healthy life overall. Like I'm a pretty robust person. We were cleaning the other day my wife and I did the very adult thing of cleaning our house one Saturday and just you know, spent the entire day cleaning stuff. And I'm a boy, so she's downstairs doing what she's doing. I just take bleach and cut it with water, put it in a spray bottle and just like douse everything, wipe it down and like it look, it's clean. And by the way, it works great, but I was cleaning in a corner. And this is gonna sound ridiculous. But there's a toilet in the corner and a corner in the corner. And so I sprayed down the toilet, and I sprayed down the floor. And then I walked away and came back. And I was in a room, obviously with a fan that was drawing the air up from the ground. And I turned back around to kind of go down onto my knees into the space to you know, wipe everything up and do everything I was going to do. And I think between the ceiling fan running and how much I had sprayed, I just bent down and took in a bunch of bleach in through like a brown. And I felt it hit the back of my throat and then started going down by a sock. Like I don't know how air works, but it was going down through my chest and as it was going down like I wasn't, I couldn't breathe. And I've never been in that situation before. And so I'm wearing rubber gloves. I'm holding stuff of earphones in my ears, like you don't you mean like an eye. I'm like, ooh. And I'm like, Okay, I need to get like, I feel like I should drink something. It's the only thought I have. I stand up immediately should not run it out of my nose. My eyes are watering crazy. I'm coughing to try it. And I'm thinking of God upon coughing at least I'm breathing. And I'm coughing and coughing, and I'm trying to pull the gloves off because I don't have a cup and I'm going to I know I'm about to like just take water like Tom Hanks in one of those movies. And like throw it at my face and try to get some in my mouth. What was that one when he was on the island Castaway, then I'm like, and I'm gonna, like do that. Right? And but I I have the wherewithal to think I bleach on my gloves, I have to take the gloves off. But as I'm reaching for the gloves, I'm like, Oh, I'm gonna die. Like they I am gonna King die cleaning the goddamn toilet. That is literally what went through my head. I was like, son of a bitch. I'm quasi famous, this is gonna get around. And like so I'm like, I'm pulling on these gloves trying to get them off. I'm trying to get the water running. And as I reached for the water, I think water or milk, I forget is water bad? Is water gonna make it worse. And then I just had the thought I was like, whatever, I gotta clear it like so I just started like shoveling water at my face. I got one good breath. And I was like, help need help. So I start heading through the house to get to Kelly. And I'm like going down the stairs. I'm like, like hacking up like I felt like a lung was coming out. But we've been married forever. So she can ignores me all the time. So so like I'm coming down the stairs and I'm like, Cal Cal Cal. Help, Help Help. She's what's going on. And I'm like, all I want to say is you son of a bitch. Like what's going on? I'm dying. Look at me. Like i Great. I'm like, I'm like bah bah, bah. So now I'm like running through the kitchen getting trying to get a glass so I can force down as much liquid as I can in between breasts and having that real panic feeling like my brain is gonna shut off because I don't have enough oxygen. And I finally get it in and I'm standing there just dripping out of every hole on my face. And like just dying. And she's like, what's going on? And I was like, You were no help whatsoever. Oh, God, I was like, I was counting on you. And you just stared at me. But But my point in telling the story. Besides learning, let's be honest, it's funny. But besides, besides telling you for that story, I was thrust into a situation I'd never been in before around my health. And I barely held myself together. And I think I was in trouble. Like I was in real trouble. And then she got put into a situation she'd ever been in before. And she kind of like just froze. And so I'm picturing you a couple of days shy of learning that you know, all this just happened with my pancreas and all this other stuff. You get a low blood sugar. You must have been me standing at the sink. You must have been I'd write I don't know what is happening, or what I'm supposed to do. Yeah,

Lara 39:04
it never happened to me before in my life. And I wasn't expecting it didn't know it was a thing for me. And I didn't know how to deal with it. But drink this juice. Yeah, everything will be fine. Let

Scott Benner 39:18
me just say this, if more of you would click on the links for the advertisers, I could probably afford to hire a cleaner to come through once a month and do a deep cleaning on the bath.

Lara 39:27
I will share it all Yeah, I

Scott Benner 39:29
mean, you guys, we'd probably saved my life by supporting the advertisers better. I'm not a person who pays them things done around my house. Like I like even my neighbor's like somebody's cutting their lawn. I'm like, can you just cut your own lawn? And she's like, I'm 60 and I'm like, Just get out there and do it you'll be fine. I'm kidding. But I mean if the podcast got big enough I would get somebody to clean the bathroom just so you all know you could save my life by supporting the sponsors.

Lara 39:53
It's an important thing for

Scott Benner 39:55
me Lark because I obviously don't know enough to like dilute the bleach better before a Yeah. I basically learned Yeah, I basically atomized bleach and then like, sucked it up. So anyway, I'm an idiot. But anyway, okay, and by the way, what am I complaining to you? You've been cancer. So yeah, yeah, we haven't gotten to the the truly horrific part of your story yet. Okay, so your low blood sugar, they get you back up. Does that make you think not even like this could happen again? You're not even at that. Yeah, yeah.

Lara 40:31
Because I didn't know like, I honestly hadn't a clue because really, at this point, nothing had been explained to me. They just kept coming in given me insulin feeding me, which was a difficult thing for me to do. They're giving me insulin for meals that I don't know that I can eat. Yeah, yeah. So and then even checking blood sugars, they would come in poke my finger, but not really explaining. They would say this is good or whatever. I mean, I honestly didn't know I had on either. They gave me but they didn't come with enough lancets or strips to do anything with just one of the sample ones.

Scott Benner 41:13
1010 strips at it. Right?

Lara 41:15
Yeah, done. So I was just really relying upon the care that they were giving me and I figured by the time I was gonna go home, I would have been to a class of some sort. I don't know what how does this even work? Apparently

Scott Benner 41:32
not. Well, good job, fired

Lara 41:35
by my oncologist or my endocrinologist. So I, they had to find a new one for me, which they did. Thank God. It wasn't until my they're getting ready to send me home after this nine days in there. And I said, but I don't know. Like, what am I? What do I do? They still hadn't explained that to me. So the endocrinologist came in and said, Give yourself 35 units of weight basic Laura at night, four units of admelog for breakfast, and lunch and six units of admelog at dinner.

Scott Benner 42:13
Did they tell you to count like what they put on a sliding scale or tell you to have a certain amount of carbs or anything like that?

Lara 42:18
Just eat like a diabetic plate? Oh, so my dad's a type two diabetic. So my mom's like, Okay, well, you need to have like a little bit of carbs, lots of vegetables and some protein. So outside of that, I didn't know how to eat anything else. I didn't know that I could give myself more insulin, if I had a snack. I didn't know any of that. Until I found your podcast. No one taught me that.

Scott Benner 42:45
That's something. I wonder if people in the medical profession hear that and are just ashamed.

Lara 42:50
You know, they shouldn't be because it is such a huge thing. And it is something that can as you know, kill Yana second, or send you into DKA. If you're not careful with taking enough insulin at the right time,

Scott Benner 43:06
Rudel, I'm assuming you're struggling along with this because these meals were probably not properly covered by insulin at all. I mean, he who even knows if that was the right amount of basil for you. Right? So it was 35. I mean, may I ask how much you weigh? I was

Lara 43:22
much heavier at the time. Okay. But as you well know, cancer and all of this surgery and I the massive weight loss very quickly, then put me into a point where I was experiencing multiple lows through the night because I was having too much at that point. So I was I think at the end I was down to 21 units of basic larges

Scott Benner 43:47
gonna say yeah. Did you have any situation where somebody who you kind of knew saw you one day and was like, Oh, my God, Laura ozempic. And you were like, no cancer?

Lara 43:57
Pretty much. Yeah, I kept it all very quiet. Actually. I didn't tell anybody what was going on. Until Until I started chemo. Actually, I didn't let anyone in. I was so in such a terrible state of mind. I didn't let any other than my very close circle. No one knew what I was going through.

Scott Benner 44:18
Can you give me a little bit of color on why that was like, why did it seem important to you to keep it to yourself at first? It

Lara 44:24
seems silly now. But I felt like I was going to be judged for maybe having a bad lifestyle. Or, I don't know. I think it was just all so shocking for me to like, even just seeing the words out loud put me into a place where I didn't want to be Yeah. And it's made it all more realistic. And I wasn't prepared to answer people's questions because we'll I really didn't know what was going on at that point for myself and trying to explain it all. Oh, I just wasn't ready for it all. And then the end when I did tell everyone this support and outreach was astronomical. And I probably should have done it sooner. Yeah, your

Scott Benner 45:12
worry. Was you just imagined really? Yeah.

Lara 45:15
100% So when I left the hospital, I left the hospital with my one day Ziegler pen, and had to stop at the diabetes educator on the way home from the hospital, where she gave me a sample of the FreeStyle Libre, a little schooling on how to inject where to inject, May, and then I stopped at the pharmacy for my analog pens, which I didn't have needles, digestive enzymes, which is another something I have to take every day with everything I put in my mouth.

Scott Benner 45:55
Which ones do you use?

Lara 45:56
I use bio case. Okay.

Scott Benner 45:59
I use pure encapsulations. But I don't need it every time. But I obviously don't have the same issue you do. I might not even have an issue. I don't even know. I just know what helps. That's all it's important. Yeah, yeah. Honestly, like, I had a slice of pizza yesterday. And I put the pizza on the plate. And then I thought were those little pills popped to my mouth. I went with two because cheese in Greece. And boom, I swear to you, I don't know that I pizza, like any bloating or no bloating, no gas, no unpleasant trip to the bathroom, you know, hours or days later. Nothing like that. And it's all just from this little tiny freakin like thing. It's amazing. So but you need it because they took they took your pancreas which is a huge part in indigestion.

Lara 46:47
Yes. And, and with pancreatic enzymes. There is either it's a fine balance too little or too much have the same effect. And trying to find that happy medium. Sometimes it's just impossible. What's the effect? You get? Serious diarrhea.

Scott Benner 47:07
Yeah, that's what I thought. Too much or too little. Same. Same situation. Yeah, gotcha. Okay, which is fun. Really, really fun. Make you long for those oily stools.

Lara 47:22
I'll take that.

Scott Benner 47:25
Weird to draw your lines. Oh,

Lara 47:27
my life is full of gross mess. Let me tell you. What happens. You

Scott Benner 47:31
bring the inside outside. Yeah, yeah. Okay, so you've alluded to this a couple of times, but you really like me, I haven't let you dig into it. Because I'm in. I'm trying to be modest. But the podcast helped you with your diabetes care. Like, in totality. This is where you learned about it. Okay. 100%.

Lara 47:50
I taught, I took what they told me at the diabetes educator, I threw it out the window. I've only actually had one appointment with my endocrinologist. Then this all went down and managed myself and learned to be bold and brave with the insulin so that I wasn't getting the huge spikes that I had. But it was the episode where Jen name is Jen. She had a total pancreatectomy as well. She was actually my gateway in the Google search for finding like people like me. And that's how I found it and haven't stopped listening. Since. Let

Scott Benner 48:32
me tell you, I mentioned earlier that there's something I have to tell you, right. Yesterday, I mean, I have a fairly robust Facebook group. And I forget I posted something yesterday and someone, a lot of times people use my threads just to find me, which is smart. Because tagging me at this point is it's difficult. I have trouble seeing all my tags. She just asks out of nowhere. Have you ever had somebody on with T three C. And I thought I definitely have like I thought of Jen right away. But what but then what I thought was, and I'm about to sit down with somebody who I think has it because this was like literally like two hours ago that I saw this post. And I thought I had looked at my I did. I did brush my eyes over my calendar this morning. Like as I was getting ready to sit down to do this. And so I'm like sitting here answering messages and at the same time setting up the file for you. And I'm basically I opened up my calendar to like put your name in the file. And I saw it and then what struck me was it said, What's your connection to diabetes? And it said other and I was like other what does that mean? And I scrolled and then I saw, I am a pancreatic cancer survivor. And then I saw all your notes and I was like, huh, and so then I finished responding to the person online. I said, and ironically, I'm interviewing someone today. Like who has that be like you know who has this situation? And that's incredibly odd because people do not ask me about it with any frequency. I mean, is that really insane? I thought so. Yeah. So okay, so you found Jan's which is hers is just called type three see right?

Lara 50:09
I think it says Jen has no pancreas.

Scott Benner 50:13
Oh yeah, I do name things like a four year old it's not my fault. I was not I was not well educated. I don't have a lot of big words at my disposal. Let's see. Yeah, let me see if I can find it. I'll tell people what episode it is. Okay, what do we got here? Pre Owned pancreas, owner of a useless pancreas, to artificial pancreas studies. You too can build an artificial pancreas Kelly's bionic pancreas? I was that not it? Was pancreas not Lord in the title. I started rolling. Jen had a pancreatectomy. Episode 279. There it is, if you want to hear that, oh, that was years ago. Oh my god. I've been doing this forever about that. 2019 Okay, well, that was about time we had somebody else on to share their story. So that's, that's really great of you to do. You mentioned before we started recording today that this is out of your wheelhouse, like being on the podcast, but you just want to help other people?

Lara 51:14
I do I have an innate desire to help people. It's just who I am. And I think that with this platform, and the things that I've gone through, there is a lot of help or support or hope or whatever can be offered. And for people that are going through this. That is everything. So

Scott Benner 51:38
once the surgery is done, and you kind of you know, you find the podcast and you figure out how to take care of your blood sugars and everything, how what's the length of time it's been from? Well, I guess first from the surgery, how long it's March 2021 was the surgery. Is that right?

Lara 51:53
It was March 2020 to 2022 Excuse

Scott Benner 51:57
me. Okay, so that's a year in more than a half ago. Yeah. For the surgery. And you did the six months of chemo. I did at the end of chemo. rang the bell. They told you you were clean the whole thing. The

Lara 52:14
whole nine yards. Yep, totally clean scans were clean. There was no sign of cancer and because I didn't do my research and they stayed off the Google I didn't realize that this is something that recurs even like they told me my margins were clear. Everything was good there. Everything they took 32 lymph nodes as well. They were all clear. So after the six months of really strong chemo, which also that chemo I will tell you is infused in sugar water over 46 hours. Which is good for diabetic

Scott Benner 52:55
Bolus for chemo. Bolus

Lara 52:57
chemo and they said keep you're trying to keep your sugar's at 10. Okay, well 16 to 22 was the average over those three days of chemo.

Scott Benner 53:09
Did you get the bone pain? After chemo? Yeah. Did anything help it?

Lara 53:17
I take like a Tylenol three. Mostly it bothers me at nighttime. It gives me restless legs and the bone pain in my legs is is pretty bad. So codeine Tylenol, codeine helps with

Scott Benner 53:30
that. Did they give you anything for the Restless Leg besides the coding?

Lara 53:34
No. And I've had restless legs for years off and on but it just gets exacerbated like crazy on chemo nights. It makes chemo nights are impossible to sleep just from the jiggly legs and the pain.

Scott Benner 53:47
There's a medicine that helped my mom with legs. I'll ask my brothers and see if I can get you an answer. Cool. Oh, shit. Laura. I'm sorry. Yeah. So I'm sorry. So you did the chemo. And it was really aggressive and you're clean margins, but you didn't know that it has a likelihood of coming back. They didn't tell you.

Lara 54:09
They didn't tell me this. There was zero discussion of reoccurrence? Yeah,

Scott Benner 54:14
they told my mom like, this is an aggressive cancer you have but you know, it's, you know, it's here and your ovaries and we're gonna take all that out, like my mom got a whole hysterectomy. Right? So we're gonna take all that out and you're clean and blah, blah, blah. And, but then nobody really said anything about like, but it could come back and it was crazy because ovarian cancer eventually takes my mom but she didn't have ovaries anymore. So if you're a lay person you think that doesn't make sense. Like you don't I mean, like how could I have finger cancer if my fingers gone? But turns out you can. Right So are they tracking you? Did you get markers or symptoms? How did you know that there was a recurrence?

Lara 54:57
So in July I had my first scheduled follow up. So they were the plan for me was to do scans and bloodwork every six months for three years. And then yearly after that for two years. So July was my first six month follow up. And because of our beautiful free medical system here in Canada, my CT scan that should have occurred in July actually wasn't scheduled until the end of September. But I went for the bloodwork and they were tracking my see a 99 tumor marker. And when I got that result, because we can check those lab results on yourself. I was sitting at home that day, I had had this test done and my tumor marker came back at 18 123. And normal is under 27.

Scott Benner 55:56
And they gave you a scan, they couldn't find any masses, but they tell you we're gonna track the marker and we're gonna go back to chemo is that about the plan. So

Lara 56:04
they put, they put in a request to get the scan done in a stop manner. And I ended up having to pay for a private PET scan because I couldn't get one done in a timely manner here and I was gonna have to drive for hours to get it. And I don't know if you noticed that with a PET scan, you have to be off all insulin for six hours before a PET scan. And when you are insulin dependent, that that's a feat in itself. It has to be below 10 Your structures have to be below 10. But without insulin

Scott Benner 56:39
without insulin. What do you just starve yourself? Yes, yeah, pretty much.

Lara 56:45
So I did I did it. But I thought driving for hours do that. I wasn't gonna do it. So we paid to have a private PET scan done, which showed spread. So I have no pancreas. But the pancreatic cancer cells were showing on my liver, kidneys and lymph nodes. But there was three masses that they could see on my liver

Scott Benner 57:11
so they could see masses already. How long ago was this? This

Lara 57:15
was in July, four months ago? Yeah.

Scott Benner 57:20
Well, first of all, you're not nearly the only Canadian I know who can't get in for simple testing. And so there's an argument to be made like, yeah, healthcare is really expensive in America. But at the very least, if you're waving cash around, somebody will see you. Yes. You know, like, so. You know, I have insurance. There's someone to bill a we can get you in. But in Canada? Yeah. I think I know this to be true. From people's personal experiences. They basically, it's whoever is going to die first is at the top of the list. So yeah, great. So you could have a problem that isn't, you know, imminent. And you could you could end up waiting a year or more to get treatment for it. And that's not that's not uncommon, from what I understand. It's not uncommon at all. Yes, some provinces are apparently better than others. Were I guess, again, I should say province, but you don't know you sound like that. Right? It's just the idea. Oh, yeah, yeah. So you get put in that's, so they would have killed you. If you didn't pay for the PET scan. That's right. And you ran the risk of your sled dogs being picked up on the scan by mistake. So you had to go Yeah, right. Right. I understand what's going on up there. Don't you worry. And the bobbin will snowman and all the stuff you guys have? Yep. So oh my god. So yeah, like, let's really think about that for a second. If you would have waited on their schedule. All these masses are growing the entire time. That's right. There's no way you would have lit Yeah, when

Lara 58:47
I finally got in for my provincially paid for CT scan. It took 17 days for it to be read by a

Scott Benner 58:56
radiologist. Oh, that's not bad. Just 17 to

Lara 59:00
17 shows cancer but 17 days before it was read by a radiologist. Okay, I already knew that I had cancer because the PET scan told me this. And but and the blood blood work showed me this. But then the oncologist wouldn't go by my private PET scan and they were waiting for to see takedown results.

Scott Benner 59:23
It really they wouldn't look at the scan you had done. Note

Lara 59:27
we had to hand deliver the images and the reports to them for them to put in the file but they were waiting for the CT scan. We had to drive an hour to this facility, get a CD ROM disk or whatever

Scott Benner 59:42
I remember. Yeah,

Lara 59:45
old school, deliver it hand deliver it to the BC Cancer Center. Someone

Scott Benner 59:49
just had me fax something for an insurance thing. And I said, Am I sending it to 87 Like what are we doing? Yeah, I can't just send you a PDF and they're like, no, no, no, there's like Oh, why doesn't anyone ever stop and wonder why, like,

Lara 1:00:06
I asked these questions all the time. And

Scott Benner 1:00:09
by the way, at least, you know, a handful of years ago, Trudeau was at least handsome now, he's a little chubby. So you're not even getting anything out of that anymore. You know? Canada, I'm shaking my head to Canada and you got all that? Oh,

Lara 1:00:23
I am yeah, I'm shaking my head everyday to like what the actual

Scott Benner 1:00:28
also large so I'm sorry so this doesn't sound positive. So I mean, obviously chemo and and I guess you're getting infusions to shrink swell. Yeah, right.

Lara 1:00:38
I am. So I have opted for a few things. And I do have some positive. I do have some positivity to talk about because I am doing very, very well. So I have started on gym side of me and Abraxane combination chemo, which is different from the first chemo. They told me that the first time the cancer cells have already seen this drug, or these drugs, it was a four dose combination. And they're still here. So I opted to try something different, which is not the first line treatment. It's second line. So it is working well for me. My recent scans show that there is delineation there is shrinkage. There is no evidence in the kidneys any longer. Wow. The liver masses, the three of them, they are shrinking and delineated. So I'm also along with what I'm doing. The chemo I'm doing high dose vitamin C infusions and hyperthermia treatments along with a million supplements through a naturopath.

Scott Benner 1:01:47
Which things are you doing cold plunge you just walking outside? I'm

Lara 1:01:51
actually the hyperthermia is old plunging, although I have considered it. haven't done it yet. I'm a little bit of a chicken.

Scott Benner 1:02:02
there's anything left to be afraid of. Yeah,

Lara 1:02:06
the hyperthermia is where they heat the tumor. So tumors cancer can't live. Anything over 40 degrees.

Scott Benner 1:02:13
Oh, like you said hyper, not hypo. I'm sorry.

Lara 1:02:17
That's okay. So yeah, hyperthermia, so I it's targeted treatment. So I lay in this water bed type thing. And then they have a panel that goes over top of you. And it sends heat up and down. So it heats the tumors, which then help the die off. So you do that a day after you do chemo. And then the day after that. So two days in a row, along with high dose vitamin C infusions by IV, and

Scott Benner 1:02:45
this is being provided by Canada or you're no longer paying for this yourself, right?

Lara 1:02:52
Yeah, it's $655 for one treatment.

Scott Benner 1:02:58
Jesus, so I did. Wondering when you said the tumors were shrinking, it made me cry. You got me. Thank

Lara 1:03:05
you. So I've been told that 1/3 of pancreatic cancer patients don't respond to treatment. 1/3 Respond moderately 1/3 respond. Well, I am in the third of that third that are responding exceptionally well.

Scott Benner 1:03:23
Good for you. That's lovely. And I have a I'm determined well, and maybe I have an answer for you. My brother sent me the answer. So roping the role, but it's commonly known as Requip, and it's a Parkinson's and restless leg drug. So our E qu, IP.

Lara 1:03:45
Okay, I'm gonna look into that. Ask about that. Because it's burrito.

Scott Benner 1:03:50
We tried a number of different things to help my mom My mom was like, it's doing some like drugs at the, you know, for the for the restless leg in the bone pain at one point, and we just kept pushing and pushing and Requip was one of the things that actually helped her.

Lara 1:04:03
Cool, that's good to know. Like to hear that, meanwhile,

Scott Benner 1:04:07
you're gonna have to call a doctor, then they'll return your call in 17 days. And then you'll mention that you heard on a podcast, they'll say, I'm sorry, we have to do our own testing. And then they'll give you an appointment for nine years from now and your legs just stop shaking about the time that you die of natural causes. And you're 90 So that'll be perfect. Yeah. Oh, you

Lara 1:04:26
got this Canadian medical system down, Pat,

Scott Benner 1:04:28
but it's free. Right. You know why? It's not worth any money. Yeah, yeah. You shouldn't live here because people still bring up Canada. They're like, Oh, it's free in Canada. I'm like, Have you ever spoken to a Canadian?

Lara 1:04:45
Oh, yeah. Americans, especially with pancreatic cancer are so far ahead of the game and standards of care. It's unbelievable the things that can happen down there in these big medical centers. If I was rich man, I would be down there and I'd be getting a nanoknife surgery and you name it, I would get it all.

Scott Benner 1:05:07
I mean, there's no listen, there's no doubt it varying degrees of, you know, everything that the luck of the draw of where you're born and how much money is in somebody's pocket is a lot to do with the kind of care you got. And you can, you know, whine and complain all you want that it's unfair, but that's how the world works. And it's what it is. So that's really a self advocate, advocate. That's

Lara 1:05:31
all you can do to keep

Scott Benner 1:05:32
arguing that's for sure. I have found recently Jenny and I are doing a series that is aimed at doctors, I keep being upset by the word advocate. Because I know what the intention of it doesn't exactly match the reality of it. Like people are like, you have to advocate for yourself, which means like, which should mean what, like, you know, don't you're asking for things you should just have anyway. And that they should give you an egg. So you're telling me like, I haven't talked you into doing your job more completely? Like that, like, I need to understand what I need medically or else it won't happen. Yep. And then by the way, when I bring it up, you're gonna yell at me and tell me not to look at the internet? How the hell do you want me to understand this, that you're telling me? You either know and won't do it? Or don't know? Either way? I'm not comforted by that answer. And so I come to you and push you to do more. But I need information about what that means. So I go to the internet. So I turn to you and I go, Hey, look, I read online, you read online? Like, wait, what? Yeah, I don't know. It's upsetting. Seriously, the word just keeps pissing me off, because I don't think it should have it shouldn't exist. You don't I mean,

Lara 1:06:44
it's you shouldn't have to, I actually have to oncologists, one that my one that I started with, and the one that I was really referred back to. And apparently he's very brilliant. But trying to have a conversation with him. Like, I'm very real. I like to ask questions. Unless he's read it in a textbook or it comes out of a textbook, he can't have an off the cuff conversation about anything. So I have found a second oncologist who is teaming up with him, that's my real talk guy. And he I can ask him stuff I, he's the one who gives me the positivity and the good notes and the and the high fives, whereas the other one basically looks at me and says, Well, we can't cure you. We're just prolonging your life. And this is how it's going to be. And this other guy's like, we're gonna get you into some clinical trials. And I've talked to this other specialist. So the help is there. Unfortunately, you really do have to look for it yourself. Yeah,

Scott Benner 1:07:44
no, that's exactly right. And that advice, and experience clearly translates back to managing diabetes. And, you know, like, if people are like, Oh, God, he's talking about cancers and diabetes podcasts, what are we doing? It's all very specific to just helping yourself. If you take what someone tells you, you are very frequently not going to end up well. Like, you know, I don't know if you've heard me talk about this on the podcast, and I am going to try to get through this real quickly. My mom only got the surgery to remove her cancer, because my neighbor's son grew up to be a surgeon, and he went to medical school with a girl who eventually ended up in OB oncology. And so I could ask my neighbor, if it was cool if I texted his son, when I texted his son, I said, Is there any chance you know, somebody that can be helpful with this because the oncologist my mom has seen, will not help her. It he was talking about like just hospice and you know, follow up. My mom got two more years. And instead, he was just going to manage her into the ground over the idea that he, he said, I'm not going to kill your mom and surgery, which my neighbor's son told me translates to pay his hospital, keep score. And if someone dies in his surgery, his score goes down. And I was like, Are you serious? That's the important stuff. Right? Right. And so I'm like, Okay, so he's like, don't worry. I know a girl from med school. So he calls his girl. That girl is like, oh, yeah, I work for this guy. He's amazing. And two days later, my mom and I are sitting in an appointment and the guy is scheduling her surgery. Amazing with my neighbor's kid grows up and does something different. My mom dies two years earlier. That is not an over exaggeration. And that's not acceptable. Yeah. Is that how this is all supposed to work? Like, right? I'm lucky because my I don't know. That's ridiculous. By the way, the guy on the other sides kid is an engineer. So I guess good thing I bought on this side of the street, like you know, do you mean like, how was it that random? Ridiculous on TV? You guys are right now like Scott, one of your neighbors kids is an engineer, the other one's a surgeon and yours Your son's got a quantitative econ degree where the hell do you live? I'm in a castle. Okay. Yeah, the castle. Yeah, the freakin point is what the hell? Yeah,

Lara 1:10:03
I have thought my way through everything I thought I have thought a thought I thought for myself and even when it comes down to diabetic technology like I, they made me wait a year before I could get the Omni pod. I asked to switch to the ducks calm like, those are all things that I took control over myself and and forced the issue because they would have just let me keep going. Status Quo and I know there's better.

Scott Benner 1:10:32
Yeah, listen, people die, okay. And some people don't have great care. And that's a fact of life. But what you need to understand is that the people you're talking to, they try very hard to see you as a person. But honestly, you're a drop in a stream. Yep. And when you look at a stream, you don't see droplets of water, you see water rushing by. And so if you want to be treated like a special drop, you need to take care of yourself, because everyone else is just at work doing their best. You know what I mean? Like I listen, if you have a really nice car, and you take it in for new tires, and it gets scratched later, they didn't see your really nice car and think like, oh my god, it's a Mercedes, I should try harder. They got 50 cars, they got to change tires on today. That's that. And this, this, whether you want to hear it or not medicines exactly the same way. It's just like, it's not that they're bad people. They're not bad people. They're fantastic people, they went to college for 10 goddamn years so they can figure out how to get inside you and take out your pancreas without killing you. I mean, that's amazing. You know what I mean? Like, God bless them. And thank you. But the system? Yep, the process is where if you're not, if you're not on top of it, then somebody else is like so. You know, I grew up around here, so I'm more accustomed to killer be killed lifestyle. Because that's just, I mean, if for you guys that live in the south, and everybody's like, Oh, I'm gonna go to lunch and two hours later, I'll do it like you would, you know, that doesn't happen here. Like, you're out there trying to get ahead constantly. You know what I mean? Like, you're not just climbing a ladder, you're also kicking with your foot as you're going up making sure nobody's following you. And and that is not a good way to live. This wasn't my point. But when you have that, that inside of you, it helps with this other stuff. Like if you've ever listened to the podcast, and they're like, how did Scott get that first thought or how did like, I would never accept anything less. That's how

Lara 1:12:29
I'm that's the thing. You don't have to you don't have to accept anything, just need

Scott Benner 1:12:34
to know what to do. And often people don't have the knowledge of like, where to go next? Or who to speak to or like, you know, even if you have all this person vinegar, like where do I point it? Exactly? Yeah, you know, absolutely. Just, I can't say that. It's, it's just so true. It just, it just really is, you know, I just happen to be a person who won't, I won't accept that. And I will reset the hill all day on every day. So like, you don't want to, like get into a thing with me. I won't give up. You know, and but I have people in my family. My mom was like, well, they said they can't do anything. And I was like, no, no, my mom like that's for other people. We're gonna work this out, you know? And so it's me too. Yeah. Good for you. It's why you're here. Yeah,

Lara 1:13:20
I'm already defying the odds with this timeframe. So

Scott Benner 1:13:23
keep going? Yeah, good for you. And when does your daughter graduate? Did you say she

Lara 1:13:30
graduates this year? So her grad will be in June of this year?

Scott Benner 1:13:33
Can I ask a hard question? Yes. She's young. So obviously, you and your husband have had private conversations. But when do you? When do you bring your your child into it? And say, look, mommy's fighting. We're doing all these things. This is what's going right. But we should have a conversation about the things I haven't said to you yet that you might need to know, especially a person like you who knows the value of talking to their mother even in their mid 40s. So have you done that? Are you thinking about it? Yeah,

Lara 1:14:05
that's that's the hard one for me, because and this is where I'll cry. Though, those conversations do happen. And we're pretty real about things around here. And there's a few things that I'm working on for her so that she has some things for from me, after I'm not here should something terrible happened to me in an untimely manner? Well, I'm not ready. But we do have the real talk about about those things. And unfortunately, that brings forward a lot of emotion and and for a 17 or should be 17. This month. It's really hard to regulate those emotions around those things. So we're trying to learn to be patient and graceful with each other, giving each other grace and space and time But there's definitely some some work still to be done in that regards with her and the family. But at this point I'm focusing on doing well. Ah, it consumes me

Scott Benner 1:15:18
Of course, right? I mean, because what do you what do you start thinking about? Something you want to say to her on her wedding day? Or if she has a baby, like that kind of stuff, right? Yeah,

Lara 1:15:27
exactly that. And I saw I saw in one of the feeds on Facebook, it was a going away to college like, photo album with notes and gift cards and that kind of thing for spare specific days along the way. And I was kind of working on that, or one page would have like, a photograph and then a little note from me and and go get a manicure or buy someone a coffee or something like that. So I'm focusing on on those kinds of things and then preparing for the eventualities. Should I not be there at first, I wasn't sure I was going to be here for her graduation, but I'm pretty confused. I'm pretty sure that that's going to be a Okay, given how things are going.

Scott Benner 1:16:12
That's amazing.

Lara 1:16:13
But beyond that, I don't know. Yeah,

Scott Benner 1:16:16
I saw these two girls on Tiktok. Maybe. And they're not not that old. They're they they felt to me, like between 19. And like 22 like that, that age their sisters, right. And I guess they lost their mom to cancer. And they get together once in a while and tell their mom into a tick tock video, all the things that that that they you're thinking it's going to be something sweet. They tell them all that they tell their mom all the things they've screwed up or didn't tell her when she was alive or something like that. It's pretty hilarious. And I love unburden themselves to their mother through Tiktok. Their their mother has passed. And at one point, the great one of the girls just starts cackling laughing and she goes, I drove my car for a year without insurance. I didn't know you needed it like and she's just like laughing. And she's like, I think they get on. They're like, Mom, here's all the things we've done since you're gone, that I know you'd be disappointed by and they just start rattling off stuff. It's very fun kind of love that. Yeah, it's very funny, actually. And it made me feel good for them. Because they were really like, together. Just they were laughing heartily. Like they, they, they were remembering their mom in a really lovely way. And at the same time, I think there was some, like, child, like, Hey, I screwed a couple things up. And I need to tell somebody, like it was really interesting. So but again, we're not going to think about that for you know, but it would be I mean, I don't know how I call myself good at this and don't ask you that question. So I appreciate you answering

Lara 1:17:47
no, seriously. Yeah, no, it's it's the real, it's the real talk about this stuff. I mean, there's so many different layers, and, and so many things to think about and plans to make both good and bad. But I think in actuality, everybody needs to be prepared for that, because life changes in a second.

Scott Benner 1:18:08
Yeah. And you know, what else to like, I could get all granola here and say something, and it'll sound like both, but it's actually true. Having the idea, like, we all live with the idea generally, that we're going to live forever, right? You know, like, we all feel like, well, we'll live in our 80s. And, you know, by the time I go, I'll be paying on myself, and I won't care anymore. Or I say stupid stuff. Like, I'm gonna like, I can't wait to like pinch nurses in a nursing home, because nobody will say anything. Like, like, like, I want to get to that age, you know? Yeah. But the truth is, is that there, there would be value in knowing your expiration date. Because, you know, it's hard to think about, but you know, even for me, like my son's not married, if I was gonna get hit by a car tomorrow, I'd spend the rest of today writing things down to my children and my wife and letting them know what I want. I want them to know, but I don't know that. So instead, if I get whacked tomorrow by a car, or if, hey, let's be more realistic learner. What if I tried to clean the skin toilet and almost killed myself? Okay, and so like, what if I have a terrible toilet cleaning accident? And I'm dead? And I'd never by the way, do you think my kids would care about my advice? If that's how I die? Probably not. What do we listen to this guy for? killed himself with a spray bottle? Oh, anyway, I would I would have the wherewithal to do some of the things that you're thinking about. And, you know, it's not a thing you want to think about happening. But if it's going to happen, then isn't it a blessing of sorts to know and be able to prepare? And not a blessing for well, you know what I was gonna say not a blessing for you, but maybe because you get to live through those emotions as hard as they are. But then, you know, 510 years from now, your daughter gets the have your thoughts with her, you know, yeah. And so I don't know there's an argument for me. Yeah, yeah, there's an argument to be made like you're what you're trying to do. If you're trying to complete your contract as a parent, even if you're not going to be able to stay for the entire employment base,

Lara 1:20:07
that's right. Yeah. Yep. That's a good way to look at it.

Scott Benner 1:20:10
Of course it is. It's easy to say, of course, for me, as I do not currently have cancer, but for you, I just think is the person talking to you and listening to you? That makes sense to me. Yeah. So yeah, well, you have such a good attitude. Can I ask that my last question is, how are you maintaining this good attitude? Well, are you on the Canadian weed? Is that what's going on? No, I,

Lara 1:20:33
I think if you asked me before, I was quite a very pessimistic person. But I quickly learned that this is not a time for pessimism, because I am just simply not ready. And I know that I subscribe now to the thoughts that what you put out there, you be specific about you, you keep your attitude positive, even when it's not some days, I fake it. And some days, I don't, but I have an immense support system. I have so much support from family and friends. That has helped a great deal. And I think honestly, it's just, it's just had, I've had to take a mind switch and change. I had to Yeah, otherwise I wasn't going to be getting out of bed every day. And I wasn't going to be putting in the effort to get dressed. And I was very in those early stages, I realized that I was gonna go downhill very, very quickly if I if I didn't turn that around. So I just I work. It's something I work at every day. And I try to keep myself out of the news and and surround myself with positive stories.

Scott Benner 1:21:49
Yeah, I bet you cancer really makes you stop caring about global warming pretty quick. Pretty quick. Yeah, you're like, who are they gonna vote it and you're like, don't care?

Lara 1:21:59
What's going on in the world? I really don't know situations.

Scott Benner 1:22:01
Yeah. Myself. Yeah, my situation just changed. I don't care what you do. That's fine. Oh, you discovered a new plant? Did you? Don't care? Well, me, I know you came on to help other people. But I'm going to end by thanking you for doing something kind for me, which you don't know that you did. To know that. I did something that helped you. With it felt very good for me, and really did well. And you're, you're nice to say that. And I'm not unaware of the reach and the impact of the podcast. But for some reason, this coupled not for some reason for pretty obvious reasons. That knowledge coupled with you also struggling with cancer. And what as recently, you know, transpired with my mom, it, you know, because there's part of me that thinks I didn't help my mom enough. And I know that's not to trust me, like, intellectually, I understand that's not true. But Emotionally, it feels like I could have made a couple of better decisions along the way or to zig when we sagged or something like that. Or, you know, I was listening to this thing the other day, I learned about this supplement that helps with your blood pressure. And my mom couldn't take her infusions after chemo because her blood pressure was too high. And I thought, Oh, I wonder if this supplement would have brought her blood pressure down. And then she could have kept taking the the infusions that were going to keep away the ovarian cancer and would she have lived longer? And like that's a really unreasonable thing to think so I don't consciously think it I want to be clear, like I'm not sitting around beating myself up about that. Yeah, but emotionally, it hurts. And when you said what you said, you you emotionally made me feel better. I thought, like, oh, this lady's has this struggle. And I made this thing and it made it better for like, it didn't fix it, but it made it better. And anyway, so you, you've made me feel good. I appreciate it.

Lara 1:23:57
I'm so glad. I really enjoy the podcast. I shared it with others. I don't know. I think there's value in it for a lot of

Scott Benner 1:24:08
people. Yep. I also defy other people to make a 90 minute podcast about pancreatic cancer, where you laugh and curse as much as we did. I thought we had a good time. We did. Yeah, I did. I did enjoy it. Well, thank you so much for doing this. If you hold on for just one second, I like to talk to you after we're done recording.

Lara 1:24:24
Yeah, you bet.

Scott Benner 1:24:33
Thanks so much to Laura for coming on the show and sharing her story with us. A huge thanks to Dexcom for supporting the podcast and for sponsoring this episode dexcom.com/juicebox Go get yourself a Dexcom g7 right now using my link. A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com Ford slash G spox you spell that? G VOKEGLUC AG o n.com forward slash juicebox

if you're looking for community around type one diabetes, check out the Juicebox Podcast private Facebook group Juicebox Podcast type one diabetes, but everybody is welcome type one type two gestational loved ones, it doesn't matter to me. If you're impacted by diabetes, and you're looking for support, comfort or community, check out Juicebox Podcast type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.