#1046 Whack A Mole

Tziporah has type 1 diabetes and is here to talk about her lumpectomy. 

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends and welcome to episode 1046 of the Juicebox Podcast.

Today I'll be speaking with a returning guest to Bora was on episode 773. It was called Rainbow connection. And since she was on that episode, she's developed breast cancer. She's back today to talk about our lumpectomy and so much more. While you're listening, please remember 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. Check out the Pro Tip series that has been newly remastered and is running right now in your audio app between Episode 1001 1026 There's a special ad on there from the contour next gen blood glucose meter that I think you're gonna love. There's a little bit of a offer in there you should go check it out, because it's while supplies last. Go look in the diabetes Pro Tip series that runs between Episode 1001 1026 Also don't forget to check out the private Facebook group Juicebox Podcast type one diabetes

this episode of The Juicebox Podcast is sponsored by cozy Earth. Cozy Earth is where I get all of my most comfortable and lovely things, my sheets, my towels, and some of my most favorite pieces of clothing. They have ladies and men's. Everything you can think of at cosy earth.com And when you use the offer code juice box at checkout you'll save 40% off of your entire order. The podcast is also sponsored today by us med us med.com forward slash juice box. US med is where we get Arden's Dexcom and Omni pod supplies from and they have much more you can get a free benefits check right now at us med.com forward slash juice box or call 888-721-1514 Get your supplies the same way we do from us med

Tziporah 2:24
Good afternoon. My name is suppor Rosenberg and I have type one diabetes for how are you? I'm alright. How are you, Scott?

Scott Benner 2:32
Thank you. I appreciate you coming back on the podcast again.

Tziporah 2:35
Sure. Thanks for having me.

Scott Benner 2:36
Oh, of course. What was your episode number two, you know? Oh, God, you don't just call.

Tziporah 2:43
It was called Rainbow connection.

Scott Benner 2:45
All right, I'll find it. And we are going to dive in pretty quickly to while you're back. But first, we're going to find out a little bit about yourself type one. Type one. How long

Tziporah 2:59
44 For, like 42 years.

Scott Benner 3:04
Was that a trumpet? You were playing there?

Tziporah 3:07
That was my it was my imagination trumpet. It was episode imagination. Trump that

Scott Benner 3:15
was really wonderful. You're like, diabetes for a long time. When you came on the podcast the first time what did we talk about?

Tziporah 3:23
We talked about a lot of things. We talked about health care experience. I teach, you know, physicians and nurse practitioners and all kinds of health care people. We talked about my daughter with another autoimmune condition.

Scott Benner 3:36
But we're we're back on for a very different reason today. Yeah. Okay. So what makes you reach back out? Because you were just on episode 773. Like you said it was called Rainbow connection. And it came out on October 17 2022. And now here we are. March of 20. March of 2023. Recording again, it's really only five months later, not something I normally do. So how did you? How did you get me?

Tziporah 4:01
Well, interestingly, I went to the podcast Facebook page and the podcast homepage looking for episodes where somebody may have talked about this particular experience because I was like, oh, I need to learn what I can learn. And this is the place where I want to begin as it relates to new and interesting health stuff and diabetes. And I didn't really see anything. So I messaged you and I said, Hey, have you ever had somebody on talking about breast cancer?

Scott Benner 4:27
Now when you and I spoke the first time, did you have a diagnosis at that point?

Tziporah 4:32
No, I didn't. Okay, so I think we'd recorded I don't know a number of months prior.

Scott Benner 4:37
Yeah, I'm doing my math probably was April 2022. When we it's it's probably been a little over a year since we recorded the first time. Yeah. So how did you learn that you had breast cancer? I guess like I'm looking for your story about how you diagnose that.

Tziporah 4:50
I am in my early 40s. And you know, I think thanks to diabetes, there's lots of things I do just on the schedule and on the regular or for my diabetes care. So I started with a new primary care doctor, and she's like, Hey, you know, what do you think about a mammogram? And I was like, oh, yeah, I should probably get one of those at some point. But I thought I don't need it until I'm 45. And she's like, No, you really should get it at 40. And I'm like, Well, I can't go back. So I'll just get it now. So I scheduled this mammogram, you know, as just the initial one thinking, whatever, it's no big deal, I have no family history. And I really was expecting this is going to be one of a number of adults health screening things that I just have to do. And it'll be no big deal. So I did that in August of this year, this past year, and several weeks later got a letter that said, wow, there's some things that aren't quite what we would expect to see. And we want you to get some more testing. So honestly, like when I first got that letter, I was like, this doesn't sound bad. I don't know anything about this. But if they were really concerned, maybe somebody would have called me so I'll get to it when I get to it. And a friend of mine was like, please don't wait on that, like that is abnormal, you need to go get more follow up. So I did. And the next visit, I had had a nother mammogram and ultrasound and a biopsy sort of all in one fell swoop. And within days, I get a call from that physician, and she said, Yep, you have an early form of breast cancer, and we need you to find a surgeon.

Scott Benner 6:29
So would this be considered an intervention that you don't think you would have had without, like, you didn't have any of the like a lump or a thickening or discharge that you had? Right. Okay. So without this testing, you won't know about this?

Tziporah 6:46
I mean, I wouldn't have known. I do think some people feel something or notice symptoms, I just didn't have any of that. This was purely a sort of diagnostic screening thing that I'd never had before. And so on the one hand, like, dang, the first time I roll in to get one of these things that turns up abnormal. On the other hand, how amazing is it, that routine screening can pick up something that really could have a huge impact? And without it, I wouldn't have known it, it really could be much worse. Yes.

Scott Benner 7:13
Well, I mean, at your age now and where you thought you I mean, you were thinking, maybe maybe I should start thinking about this and three more years. Right, you would have been dead in three more years.

Tziporah 7:23
Well, I mean, thanks. Yeah.

Scott Benner 7:27
Is that not true? Is it not necessarily true if like, undiagnosed breast cancer won't do that?

Tziporah 7:33
You know, I'm new to the breast cancer scene. But I've learned a lot. I think it depends on lots of features. Like, what kind is it? How quickly is it growing? However normal are the cells? There's a lot of characteristics that sort of describe tumors. And this one, I don't know, what would have happened if I'd waited two more years, it certainly would have been bigger, it would have been a worse diagnosis for sure the treatment would have been worse. I think those things are for sure. True.

Scott Benner 8:00
I'd before I ask you about the surgeon, I just have to want to dive into the psychological part of it a little bit like, you get sent for the initial before that you have no concerns, right? That's just like I'm doing a thing. It's fine. Zero, right? Zero, then you get back the Hey, something's abnormal. You're in your you need a friend to push you a little bit where Where are you right in that space?

Tziporah 8:22
You mean around the being pushed? Yeah. Like, why

Scott Benner 8:24
did you need to be pushed?

Tziporah 8:26
I mean, I think the thing, the report, there's like a point at which stuff is just written in a different language, right. I mean, that's true for someone who's new to diabetes, all the tests and the different things that people are looking for. It's true there too. But this was all super new to me. So I see something that says microcalcifications, and I'm like, well, micro sounds small. I'm sure I'll get to it when I get to it. You know, I think I probably Googled it. And it said, Well, half the time it could be benign and half the time, maybe not. But I thought, well, they're probably just teeny little things. And how terrible could it be? So I my initial response was sort of to make it micro. And I was appreciative that I got pushed to get follow up, because it turns out, it really wasn't a micro problem at all.

Scott Benner 9:16
Yeah, that's interesting. So well, and how did your friend know? What did they have experience?

Tziporah 9:23
I think family history and also maybe like they're in a different place on the continuum of like, when you get an abnormal result letter, just go do the thing. Like don't wait, don't mess around, just go do the thing.

Scott Benner 9:33
Do you think there was any impact on your thinking from having diabetes and being so accustomed to just taking care of your own health?

Tziporah 9:41
I've done a lot of thinking about this, and I'm sure I'll do some more in the course of this conversation. I think I'm really attuned to all kinds of things in my body, like all the things that diabetes could do on it, like visual changes, I'm looking for them. Anything related to my kidneys, my blood sugar I just am so tuned in to so many things. So on the one hand, I like spent way too much thinking about what's happening in my body all the time, right? I didn't have any reason to think that this particular thing would be a thing. So I like went all the way on the other end of the continuum, I think because I was expecting it to be negative or no big deal. I like didn't have anywhere to file worry about it. So typically, I take really good care of myself. And if somebody says, You need to go for more testing, I always go and do the more testing. But I think I just, it was like an outlier. It was brand new, and I thought it can't possibly be breast cancer, because in my family, we don't do cancer, none of us.

Scott Benner 10:42
This is a very new thing for your family, super new. How do you pick a competent surgeon? How do you know how to do that?

Tziporah 10:49
Oh, really? Good question. So I have, you know, in the last podcast I probably mentioned, but I work at one of our local medical centers, I have a lot of colleagues across the medical center who either have heard things or have worked with the surgeons and I just put out feelers to my network. And I said, Who would you recommend? Now the thing that I think is interesting, is that who people would recommend, you know, it's all in the eye of the beholder, right? Like, this person's really good. Well, what does that mean? That they're surgically very good that they have a great bedside manner that they're really smart that they've written a lot of, you know, scholarly papers. But this person's name came up a few times. And I said, Okay, well, I'll reach out and see how quickly she can schedule me. And I got seen, pretty soon, I was really grateful for that.

Scott Benner 11:33
I wonder if people know that doctors get scored by their outcomes. And because of because of that, some of them don't take cases that aren't more slim donkey. And so their scores look great, because they take the ones they know we're gonna work out. That's, that happens. That's the thing.

Tziporah 11:53
It is a thing. Yeah, it is a thing. I don't I don't know whether, like in my first outreach, I was like, Okay, here's all my deets. I think I just said, I've done these steps. And now I need a surgical consult. And, you know, can you see me?

Scott Benner 12:06
My mom, I was just talking to somebody about this yesterday, privately. And I told them, like, my mom is only alive right now. Because Arden has diabetes. And here's the connection. Here's the connection to that. Because I've spent so much time helping Arden navigate through health care. I am not a person who just hears the first thing they hear and goes, Okay, that sounds fine. It's what you said, you're the guy. So, you know, you're the lady who said it, I'll do it. The first surgeon that saw my mom after her cancer diagnosis, told us she's not strong enough for surgery, and said she should go to rehab and then get herself stronger, then we'll do it. I was like, okay, you know, what do I know? That's okay. So my mom goes off to rehab. Now, I did make the argument in the moment I said four days ago, she was fine. Like, you know, like she hasn't deteriorated that much like she was living her life a couple of weeks ago. She's not under some, she hasn't been under some duress forever. I don't know that this is necessarily like launched, take off the cancer, that she needs the PT. So my mom goes off for a month, I think, to a physical therapy rehab center, where she's living every day catheterized with a tumor in her and doing PT to get herself stronger, goes through the whole thing does exactly what they want, makes herself stronger. And she's being booted out of the rehab now, like if you really tried to imagine it's my mom lives by herself. At that point. She's incapable of taking care of herself now because of what's happening. And they're telling us well, her last day of rehab is Monday and I just keep thinking, Oh, well, well, the surgeon is going to do the surgery now. Friday, Saturday, we call the surgeon like, what's going on? Like, when does she go to the hospital? And he's and doesn't call us back? Yeah. And finally, I pinned the guy down and got him on the phone, like, what are you doing? And he goes, Well, I'm not gonna be the one to kill your mom. And I'm like, I'm like, isn't she dying? And he goes, Yeah, but I put her on the table. She's not going to I said to she did everything you said. And I thought to myself, oh my god, he has no intention of helping her. Mm as Oh, and then we were in a panic. We moved my mom back to her apartment. We didn't know what else to do. She's now living by herself. catheterized with a giant tumor in her like have fallen over and clear as day my wife and I are standing outside of our house. And I'm just like thinking and thinking. I'm like, what do we do? What do we do? What do we do? What do we do all my family's frantically looking for doctors to call. And it just occurs to me that my neighbor's son, he became a surgeon. And I called him and he's got he's in his like, mid 20s You know, but he's like our real prodigies at this doctor. He's at this hospital where there's like one opening every five years for this residency and he Got it. And oh my god, so I thought, okay, he must either know somebody or know something, right. So I get him on the phone and he goes off, give me a minute. Contacts a friend from medical school who became an oncology OB asks her, you think your guy would do this? She it's a now it's a friend now. Now I'm in the system. Now behind the scenes, doctors are asking doctors to help me no problem. My mom's got an appointment two days later, sees the guy. He looks at her and says, you know, Bev, listen, if we don't do anything, you're gonna be dead in a couple of months. What do you want to do? And she's like, well, I'd prefer my mom said, I'd like to go down swinging is what she said. And, like, literally, like heat, we moved us out of his office to pre op testing. And she was on his schedule, like four days later. Yeah, and now it's a year and five months later, she's doing great to me, the other guy was gonna let her die. So I don't know how you pick a doctor. 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Tziporah 20:00
It just shouldn't have to be that way. And I know that it is there's so many components of your story with your mother where I say shouldn't have to be that way. You shouldn't have to be waiting and wondering family shouldn't have to read between the lines about like, Are you a good case or not a good case? And I don't mean to throw surgeons under the bus at all. I think there are so many twists and turns to health care and access. It's not even about finding a good fill in the blank. It's like finding an any fill in the blank, who will be able to see me. Yeah, but I do think you're right about what you said about Ardens diabetes, my advocacy for myself, like in health care will always be strong. Yeah. I mean, there's, there's some downsides to that too. But if I had met this surgeon and the first visit, and I was like, No, I'm not, I don't feel this, I don't have a good vibe. I'm not gonna let that person operate on me. But I would know, I could request a second opinion. And I don't know how many people know that. There's a lot of us who just sort of get what we get, we don't get upset. And we are we have to be active and advocate for ourselves in that space.

Scott Benner 21:06
It's interesting to how easily you can feel pressured. And then it'll move you to like inactivity, or to do something you wouldn't normally do. Like, because if I was a regular person, I would have thought, Oh, well, the doctor says My mom's not a candidate for surgery. And we would have sent her to hospice. And instead, I was like, that's not right. Like, that doesn't make sense. Like, I actually thought, Who cares if she dies during the surgery, if she's gonna die two months from now, the risk analysis there doesn't make sense of, you know, now, it's almost like the high and low blood sugar thing. Now, it's just, I was just talking, I was just recording with somebody else. And we went over that idea of like, their doctor was absolutely happy for their agency to be in the nines. And then they found the podcast got their agency into the fives and the doctors yelling at them. You're gonna hurt yourself. Well, the nine a one seat wasn't hurting me. Right? Like fascinating. I was like, I said, Look, I don't want my mom to die next week. But she sounds like she's definitely going to die two months from now. So let's go. You don't mean like do something. And thankfully, she was there for it and, and up for the fight and everything. But was the surgeon who worked with her? Yeah, by the way, there's the the hero is the man who said, Hey, listen, if she dies, at least we tried to help her, instead of protecting his score at the hospital, you know, and I was like, my god like this, and how would anyone know that? Like, how would anyone know that?

Tziporah 22:37
I mean, I think if we set the scores aside for just a second, because that's a whole world that I think is both really sort of interesting and confusing and complex. And I don't know what ton about it. But the other thing that I think is embedded in what you're describing is like, and I think it's one of the premises of your podcast. information allows you to make the best choices. You can,

Unknown Speaker 22:58
it's all you need. Yeah, so

Tziporah 22:59
one surgeon's opinion is one surgeon's opinion, one endocrinologists opinion is one endocrinologists opinion, with diabetes care, this is a long term relationship, hopefully, right? To find somebody that you feel like gets you and sees you and respect you, and also gets and understands the micro details of diabetes such that they can partner with you like that's a good find.

Scott Benner 23:24
It's not easy in time, either. There's a little bit of investment of effort on your part.

Tziporah 23:29
salutely. Yeah, absolutely. Yeah. And then if you take something like cancer, there's fear in the mix, too. You talked about being pressured or feeling pressured, I can think of fewer more vulnerable scary moments than being told on the phone at 447. On a Monday evening by some lady I just met, you have breast cancer. Now you need to go and do all these other things. And on the phone, I'm like, okay, cool. Got it. Thank you so much. So we hang up the phone, and I lost my stuff. But the fear that comes with something new and scary, that feels like it's threatening everything. How could you not feel pressured around the choice of a surgeon around? What do I do next? Who do I talk to, like, the fear and the overwhelm, I think contribute to people feeling backed into a corner and not knowing that they have choices.

Scott Benner 24:18
You know, it's funny, I was talking to somebody recently who was expressing that that's at a lot of the places they're shopping. Now, as they're checking out, the register person spins this screen around to them, where they get to choose if they want to leave a tip or not. And they and the person said, like, this is a scenario where no one's doing anything like this is not a tipping situation. And I was like, right, like this is a cash register person who's ringing something up is the same as been my entire life. They're making a salary. It's not like a white person salary where they're making $2 An hour and they're living on tips. And I was wondering, like, Where does the story going? Because you're really like smart like driven Like, a good solid, like, human being she goes, I give them a tip every time. And I said, Do you want to? And she goes, No. So why are you doing it? Because I don't know, I can't take it. They're looking at me, or there's someone behind me, I don't want them to think I'm a bad person. And I was like, wow, look, it isn't that interesting. It's that easy to reach into that lady's pocket and take $2 from her, you know, and it My point is just that we can all get put into situations, they don't have to be about cancer or health care, where you just, you end up doing the thing you you wouldn't normally do if you weren't being pressured. So

Tziporah 25:36
well, I'll I'll give you another example of like another step down the line on that same thing. You know, I'm an educated person, I spent a lot of time in school, took out a lot of student loans for my degree, I work in health care, I read voraciously about anything. If you told me I've got this rash, I'd be like, Oh, tell me about the characteristics of the rash. And I would look it up and I you know, I just am that kind of person where I'm going to go toward the information. The other thing that I do though, is I asked a bunch of questions. And some of that is a way to help me manage my fear. Some of it is just to do what I said a minute ago to have enough information with which to make the best decision I think I can, and so much of our health care system just doesn't. It's not designed to accommodate that. So I could say to the surgeon in this consultation, okay, well, what about this? And what about that? And what do you suspect that will be like? And if I do that, but I don't do that, what can you tell me, and suddenly, I'm in a visit that probably on her schedule, is more time than she expected to spend? Because I don't want to leave that consultation agreeing to have her cut me open. If I haven't asked all my questions that of course, can go overboard real quick. But even as as educated and experienced as I am in as a health care person, as a teacher, and as a worker, I'm always worried like, who's going to be like, Oh, this lady is too much. Oh, yeah. She asks too many questions. She's She's a pain, like, I don't want to be a pain.

Scott Benner 27:03
Well, especially because people have a way of leaving you when there have been a pain, like, yeah, right.

Tziporah 27:09
So if I have a side effect from from a surgery that like, Oh, I'm worried about this. I'm also worried, are they going to dismiss me as somebody who's just fearful and anxious? Are they going to take me seriously? And I'm not always sure how it goes. Which then means I have to come back and be persistent them.

Scott Benner 27:26
Right. Yeah. I mean, in the end, I think you just have to ask the questions, because their understanding of you, you can't control it all. So you might as well do what you know, is right. And if they're incompatible, then move to someone who is compatible. Yeah. You know, maybe we're spoiled here. But the tie the idea about the timing of the the appointments, I have to be honest, Arden's appointments in her Endo. Are there forever long? Yeah, they go on until we're done. Yep. And no one ever I've never felt rushed in and no appointment ever. But I can tell you that they're 45 minutes late to my appointment, sometimes while we're sitting in the room. Yeah. And so I just tried to sit there and think, Okay, well, right now the doctor is talking to someone else who needs this, and they're going over because of that, and don't be upset about it, you know, just kind of let it be. But I mean, eventually, the end of the day comes somebody's getting screwed at five o'clock, you know? So it really is. I mean, obviously, it's a it's a very well understood problem. The length of time doctors have? Yes, but I don't know what you do. I also don't know. Like I will, I often want to put myself in their position to like, how many of those questions are they just like us doesn't matter? It doesn't matter. It doesn't, you know, but it does matter to you. Because like you said, some of those times, those questions are for your own comfort.

Tziporah 28:54
There was a point in my initial back and forth, I think even before my surgery with the surgeon where I interpreted their response as being like, Okay, now you're asking too many questions. And I said to her, you know, I'm guessing you do this all the time. And this might not look worrisome to you. That's my first rodeo, and I hope to never come back. So, you know, I might have even apologized, I feel embarrassed to say that, but I'm so cognizant of that, like that, you know, eye roll that I wasn't supposed to see, or, you know, something that seems mundane to them. It's everything to me. It's my first time, hopefully my only time but it's scary and big and new. And sometimes when I label that the person on the other end is like okay, of course. Yes, of course. Of course you'd be scared. Of course you have questions. You know, what else do you have? I hope it goes that way. Most of the time. It doesn't always but

Scott Benner 29:49
what it seems like that's a good way to reframe the conversation. So if in fact they're in their own head, and just going like, oh, here we go, here comes the next thing she's going to ask is this It's like to be reminded that I've never you've done this a million times. I've never done this before. Yeah, it's good. It's a good, really good point. Just to remind them, that I'm not everybody. I may. Yep, yeah. Okay, so

Tziporah 30:14
one other thing I'll say about that. There is something like universally human about somebody saying, I'm scared right now. And I don't know very many people where I'm not friends with them anymore. Where somebody said to them, Listen, I'm scared that they wouldn't like pause and back up and be like, okay, sorry, look, let's just sort of slow down. As a patient I don't want to lead with I'm really freaking out right now. I want to look put together and cool and relaxed and all that stuff. But when I'm terrified, you know, if I can label it, sometimes it reminds the other person like, okay, it's too much, it's too fast. Can you just sort of slow down and be gentle? And I do think it's an invitation to humanize

Scott Benner 30:53
the situation? For sure. Yeah. It's funny, as you were saying that, here's my her my my mind jump to, don't they tell you when you're kidnapped to tell the kidnapper like who loves you, and that there are people in your life and what your name is so that you you don't look like a possession to them, but you look like a human being and then hopefully try to make a connection, you really are saying that you're saying, remind the doctor, that you're a person, not a process?

Tziporah 31:21
It's not a disease? Yeah, it's not a cluster of cells.

Scott Benner 31:24
Now, it's such a good idea. And you could also see how they could get in that situation too. Sure. Absolutely. No, absolutely. Listen to I'll share this with you. When I speak to people privately, which I don't do as much as I used to, but I still do it. Sometimes they'll want to get on the phone and tell me this big story about their diabetes that they think is going to illuminate the problem. And then I'm going to figure out the problem. And after a number of conversations like that, what I learned was that their understanding of what's happening is so skewed, that hearing the story is almost not valuable. A lot of the times, so I learned to ask questions. I'm like, I'll say, look, I want to hear your story. But first, let's answer these questions for me. And after they answer the questions, most often I'm able to point them in the right direction. But the story they tell, like, I'm not gonna lie, there have been moments where I'm on the phone, I'm like, I don't even know if I need to be here. You know what I mean? And and so I wonder how often doctors feel that way. Like, oh, they're gonna say this and then this and then this and then they'll go to this and then they're gonna cry, and then this is gonna happen. And we're all still gonna end up in the in the operating room anyway, wonder if that doesn't happen. You know?

Tziporah 32:37
It. I mean, it's got to at least some of the time and I'm like you I can't fault you know that the people are the times when it does happen, because there are so many of us who need whatever is the thing a surgeon and oncologist, an endocrinologist, so I do part of me gets that. Yeah. But then when I'm in the room, it's like that. That rack could do funhouse mirror thing where I'm like, I, I just feel like I need to be the only one in the world right now.

Scott Benner 33:03
Yeah, and nothing wrong with it. Right? I mean, even if you want to just look at it from a business model, you're paying, you know, so do the thing if they

Tziporah 33:12
can catch me out.

Scott Benner 33:16
You haven't paid for that surgery yet.

Tziporah 33:18
I mean, health insurance is a good thing. I'm very fortunate to have it.

Scott Benner 33:21
It's a good point. What was your out of pocket for the surgery? So

Tziporah 33:25
I this is gonna sound super twisted. I play a game every year with my health insurance where I have a high deductible plan. But the and I every year I'm like, how quickly can I meet it? diabetes is quite costly. So if I fill all my supplies at the start of the year, I'm out a couple grand between that and other stuff with my family then I'm like cool. Now I'm in my my regular coinsurance frame of mine. It happened to be that last year I had the surgery in November and actually had a second one in December. I'd already met my out of pocket maximum. So cost to me was zero. Wow. But it was only because I was already out 1000s and 1000s of dollars from the the workup MRI biopsy, mammograms

Scott Benner 34:07
we had that year every once in a while cyclically it all just sort of like hits at the same time and all of Arden supplies are due in January. Now but at the end of January or like dizzy, I said to Kelly um, I think I spent I think it's nearly $2,000 this month. And she's like how I'm like she did her CGM was right away she needed this right away that right away and there was none of the copay had been met. So I was like, Oh, holy hell, in the end, it doesn't matter. You're gonna pay the two grand at some point. But it when it all happens at once it's it's it's off putting but it's helped you because then it doesn't know you're just spreading the money around in different places reading it spreading it out. Yeah. So you find the surgeon and you how long from when you say okay, I'm going to use the surgeon. Do you have an appointment for the surgery? a month. i That's I want to About that month.

Tziporah 35:01
Yep. So I'm not a surgeon, I'm not an oncologist. I'm not I'm not, you know, my experience is my own. That's all I know. But I leave the appointment. And the scheduler says, Okay, well, here's your date. And I'm like, okay, great. And part of me is like, oh, that's soon. And then I leave and go home. And I'm like, Oh, my God, that's like a month away. What am I going to do for a month? What must she think about what she knows so far that she's willing to let this thing sit in here for a month? Does it mean that it's not worrisome to her? Does it mean it's not dangerous? Does it mean she doesn't think something terrible is gonna happen in a month? If it was really bad? would she say come in next week? So there was a lot of sort of, like, mental math, but like, they were all variables? Because I didn't actually know for sure. Yeah. All I knew was, there's my date. And I'm like, Okay, well, I'm gonna get ready.

Scott Benner 35:55
Well, here's the worst part. What if it's really bad, but I only do three surgeries a day, and there's 90 people ahead of you. So you have to wait a month?

Tziporah 36:02
I mean, that would have been terrible to, you know, I would hope that if it was bad that this person would have said, Listen, this really needs to be operated on sooner. I'm going to refer you to a colleague like I think most people would do that. I'm guessing that the initial diagnostics, like the biopsy and the MRI, were reassuring enough that this is a relatively small, relatively contained, shouldn't be that terrible a month is going to be Okay, gotcha.

Scott Benner 36:29
So, psychologically that month, are you? Are you worried the whole time?

Tziporah 36:36
I think I had a mix of like, cool, no problem, because in a month, this thing's going to be out. And I'm going to be good to go. And terror because my experience was surgery is like not that much. I had a baby that came out surgically. And that's pretty much all I've had. So I had tell her about the surgery, worry about anesthesia, worry about my blood sugar, worry about what's growing? And how bad is it going to be by the time she gets there? And can I really trust these people? But then also, like, I have a job and I have a kid and I have other stuff to do. So I'm just going to try to ignore it until I get closer. I would say the worst of it was probably like the week before the surgery.

Scott Benner 37:15
How did you manage your blood sugar? Did you talk to the surgeon about like, did you leave your CGM on your

Tziporah 37:21
left on the CGM, I left on the pump. And, you know, there's been a couple of posts in the last several weeks about what do I do for these surgeries. The good news is, you know, my surgery was relatively short. The case was not scheduled for a long time. But she basically said you'll need to talk to anesthesia about it. That's not up to me, which I think is not uncommon. The anesthesia team who's managing that stuff in the moment, I think really got the say so at least as it relates to my case, so I had a, you know, a pregame call with the anesthesia nurse to say, Listen, I'm coming in with this. I've already talked with my endocrinologist, I'm gonna set activity mode several hours prior to my arrival time, I know I'll be NPO. But I'm going to aim to be in this range. And so I will, like fed them all this stuff. I'm like, I'm going to be good to go. Don't worry about me. And by the time the anesthesiologist came around, they were like, okay, cool. No problem.

Scott Benner 38:10
Yeah, because you understood what you need to do. Better than they did. Probably yeah, right. That the anesthesiologist was probably like, oh, this lady's got this.

Tziporah 38:21
Thank God because I don't really want to worry about it. She's got it. Cool

Scott Benner 38:24
day before Did you worry about that? Right? There's a time you can eat after midnight. Did you think what if? What if my blood sugar gets low?

Tziporah 38:30
Well, the guidance I got from the surgeon was if you get low, you can do clears like apple juice. And I'm like, okay, that's probably not exactly how I would treat alone. You know, I, I can't eat anything else. There's, you know, that's gonna get me to spike, quickly, potentially. And let's say you have three thimbles, full of apple juice or whatever. I knew I could do that if I needed to. And I didn't end up needing to, which was sort of amazing with all the stress that was on board, but things were really stable.

Scott Benner 38:58
Yeah, that's excellent. Are you using an algorithm?

Tziporah 39:02
I use Control IQ. Okay.

Scott Benner 39:06
Did you eat differently in the lead up to the days before? Did you like go with more lower carb items? So you weren't using a lot of insulin? Did you give it any kind of thought like that?

Tziporah 39:16
I feel like maybe I should have talked to you. I feel like I ate junk before because I'm like, what if I don't come out of surgery?

Scott Benner 39:22
I gotta get a Ring ding and before

Tziporah 39:24
this thing I got I gotta hit the drive thru before I go under anesthesia. I don't I don't remember making modifications. And I certainly didn't get guidance from it from anybody else. The only stuff I got was really about you know, not taking anything by mouth after midnight except for clears and occurrence guidance about you know, the activity mode, but I didn't really get anything else in terms of ways to keep things really stable for the couple of days prior I left I

Scott Benner 39:50
got an image in my mind of your car full of like fast food takeout bags and candy wrappers and you're like if I'm going out. This is how I'm going to go home. Yeah, one more milky way dark before this is over. Alright, so the surgery itself, I mean, it sounds like it ended up being no issue.

Tziporah 40:10
It was no issue from a diabetes perspective, it was very smooth sailing. It was a short duration, you know, I got up, you know, I came out of anesthesia easily no problem, tested my blood sugar, you know, they always want you to use their meters. And I was like, Really though, so they take out this thing that's like the size of a briefcase, and they're like, this is our hospital glucometer. I'm like, okay, so everything was fine. I went home, and I slept the rest of the day, basically, you know, not a lot of appetite. But the nice thing about algorithm is that it didn't matter too much, you know, things stayed really stable, because I just had basil on Boy,

Scott Benner 40:45
I wish I wish people knew more people knew that if you have good settings on an algorithm, you can fast for so long without needing food. I don't know a ton about this procedure. Is that a lumpectomy that you had? This was a lumpectomy? Yep. Okay. And what's the prognosis afterwards? What do they say?

Tziporah 41:05
Well, I mean, it sort of depends on lots of things. So after a cancer, tumor removal, something like that's a lumpectomy. All of that gets sent to a pathologist to review it and to analyze what they take out to make sure it's what they thought it was. And if it's something else to sort of, describe the characteristics to, you know, to say, what should happen next. So aside from the week before the surgery, the worst was probably the three weeks after the surgery where it was just like an abyss of there's going to be more treatment. But we don't know exactly what we got to wait for these results. And they just took forever, it felt like forever. So by the time I finally got the report, it came to me through my electronic chart, you know, I don't know how many people have that electronic health record. But I get a notification on my email that says you have new results. I'm like, sweet, so I pop in there figuring I'm just going to read. Yep, this is exactly how they said it was going to be. And that's like reading something and clicking on I mean, like it was all some other language that I didn't understand. But I zero in on. Okay, what's this marker? And what's this receptor? And what does that mean? And how much of that and why does this say, invasive? And what does that mean? And the punch line is that there was infiltration that they didn't expect, it had sort of moved to an area that they didn't expect, based on the imaging, I did think to myself to this happen in the month that I was waiting, but you know, I can't really spend too much time there. Because by the time I got to surgery, it was what it was, you know, their initial thought about what the cancer was evolved based on those results. And then they said, Well, now that we know that there's evidence of invasive disease here, we want to get some more information, we want to biopsy your lymph nodes, and we want to take some more tissue from around the initial site. So I had a second lumpectomy and a lymph node biopsy a month later. Oh, my gosh.

Scott Benner 43:01
Is there an indication that this is I mean, what is that? This is the end conversation? Or do you have to get anything prior? Is there any medications chemotherapy afterwards, they start talking about, like taking your breasts or anything like that? Or is it just we'll do this?

Tziporah 43:18
Really good questions? Yeah. So like, at the initial, you know, I'm meeting with a surgeon. So to rewind the table of it, I'm sitting with the surgeon, she says, Listen, this is what we think you have, we think this is contained in the duct, like in the milk duct. You know, you could choose anything from a lumpectomy to a bilateral mastectomy. And I'm like, why would anybody do that? And there are good reasons why people would do that. If they have a family history, if they're concerned about it coming back, you know, I mean, I'm concerned about it coming back. But if there are other risk factors, they might say, Listen, just take them both, because I don't really want to deal with this. I'm so scared, just take them. And that's a reasonable choice, even for relatively contained disease. But I was like, I feel pretty attached to these. I would like to keep them. So let's just take out the lump, and we'll go from there. So when the results came back, she said, Okay, well, we now need to make sure it hasn't spread other places. The lymph node is going to give us information about that. Because if the lymph nodes have picked up some of these cancer cells, that's what makes it makes risk for it to go elsewhere in your body and to have, you know, metastasis. So I'm like, Okay, well, let's get this lymph node out and figure out what's going on. Because by that, I mean, by that time, I'm terrified. I'm like, Okay, what if, what if the fact that I keep forgetting what to pack for my kids lunches because I actually have a brain tumor? Or what if that ache in my back is actually some other tumor or what if my exhaustion is not just the fact that I just had surgery, but it's because I have some other kind of cancer. So then my wheels start turning. By the time the second surgery was done, the lymph nodes came back negative which is super reassuring. But if they'd been positive, I would have been in for a course of chemotherapy. I knew I was going to get radiation either way. And then I'm going to be I had just started on a, an oral medication that basically blocks, estrogen receptors that's supposed to reduce the risk of this thing coming back.

Scott Benner 45:21
Okay, and how long has it been now since that they looked at the lymph node?

Tziporah 45:25
So that was December 9, it's been four months, three months? Yeah.

Scott Benner 45:30
Yeah. Three, wait, January, February, three months? When's the next time you see the doctor?

Tziporah 45:38
I see. I mean, now I've now I will see a whole bunch of people, I had several weeks of radiation. So I saw somebody every day. I'll see the surgeon again later this month, I'll see medical oncology who's managing the medicines. I'll see radiation oncology again in several months. So I think I'm going to be seeing somebody from someone in the team probably every three months for the foreseeable future, maybe a couple of years.

Scott Benner 46:02
And that that's the plan, keep going back checking up. And then eventually, will they? How long does that have to go on before? Before they say okay, you don't have to see us this frequently. And

Tziporah 46:12
I think a year or two plus, you know, follow up mammograms every six months.

Scott Benner 46:17
How do you feel right now, like about where things are? Do you feel comfortable? Or is it? Are you off kilter?

Tziporah 46:24
I feel comfortable enough. It's really a relief. I mean, radiation was every day for weeks. So you know, working a full day running in getting my treatment coming home managing my kid, like it was like a big chunk of my life for not very long, but it felt very invasive, I guess, for lack of a better way. I'm worried about the medication. I'm worried about the impact on my diabetes, frankly, I'm worried about the side effects, but energetically like I feel pretty good.

Scott Benner 46:57
Yeah. What are some of the medication impacts you're worried about?

Tziporah 47:00
Well, this medication blocks estrogen receptors. And so some people develop symptoms that are like menopause. There's like a whole list of those. None of them sound good to me. There's gi side effect potential. So the physician was really good. I said, Listen, I'm kind of worried about this medication. And she said, most of the side effects that people have most of the time are annoying, but tolerable. They always think it's interesting when a physician says tolerable, because to you. So knowing but tolerable, but some other ones include like blood clots, like oh, that doesn't sound good. Which I don't know how I'm going to know. I've never wondered if I had a blood clot,

Scott Benner 47:43
you'll have a heart attack. That's I don't know.

Tziporah 47:46
And then will it be because of the medication or because of diabetes? Like no, thanks.

Scott Benner 47:50
I say I searched it is interesting. I mean, I don't know what else they would say. You don't I mean, but the the idea of like, Don't worry, it'll be tolerable. What does that mean?

Tziporah 48:02
Like? So it's going to be more tolerable than getting breast cancer again, on that side?

Scott Benner 48:06
I think that's what they're saying. Yeah. It's not it's not the other alternative. So any feeling of you have to be kidding me? I have type one diabetes, and getting cancer too.

Tziporah 48:19
Okay, here's like the real real. I, someday I'm going to write a book. And I'm going to call it like the short straw, which is funny, because I'm also short. I know, we talked about that on the first recording, but let's bring it up this. Somebody Thank you. Somebody throws the short straw. And I'm like, can somebody else please draw it? Like, why did

Scott Benner 48:39
we do this draw away? Why does any of us draw this? Or why

Tziporah 48:42
are we struck like this? Is there like a certain number of people that have to get extra BS things for their health? And like, why does it have to be me? So I definitely have that. Like, why me? I also have like, Okay, well, there isn't like a certain number of people who are going to get it and you know, I'm just I'm unlucky. I think it's like, I am pretty well equipped. Honestly. I'm equipped because I have experience with chronic illness. I'm equipped because I know how to navigate healthcare. I'm equipped because I have family support. I'm equipped because I have health insurance like I, I have the I have pretty good stuff to be able to navigate unlucky. And I really wish I didn't have it. I really hope I don't get it again, or something worse. And I've grown up with diabetes. Like I'm looking at all these parents, with kids with new diagnosis who are so scared about so many things. And I think you know what, these kids are going to do great if they use all the technologies and they have all the support and they know how much you're you're invested in them. I've heard diabetes a long time. I've never had a fantasy that my life was going to be without complication on the health side. I just didn't expect it was going to be this I think it's

Scott Benner 49:55
it's interesting because what you just said I believe in 1,000,000% Like, you know the technologies Better understanding is better people understand how to use insulin better understand nutrition more, if you don't, you can get education from a lot of different places. And yet, if you said that to me, and my kid was newly diagnosed, I think, yeah, but somebody, it's going to go wrong for somebody. Is it going to be me? Is it going to be her? It? You know, it could be and then that's enough of the unknown, to not allow you to accept the fact that overwhelmingly, you're probably going to be okay. Yeah, you know, that sucks. Because there's no way to just, and here's the secret for people who want the secret gift to do everything that you can do, and then believe that it's going to be okay. And then if it's not, do everything that you can do, and then as soon as you're done, believe it's going to be okay. And that, that pacing, not just big picture. But the truth is that that's the same frame of mind I use around correcting like, blood sugar, you know, like, there'll be times is an example, there'll be a time when I see a number, and I'm like, we have to correct that we correct it, and everything works out the way we expect. And then one time you crack that same number you end up below. Yep, you can't say, Well, we did this four times. And one time, a low came, so we'll never do it again, you actually have to think the opposite about it. Like I did this four times, and three times it worked out exactly the way I expected it to. And that's our goal. And that's hard. I can tell you, from my perspective, like pulling that trigger, you know, two o'clock in the morning, and you're like, this needs insulin. And you think, but I don't want her to get low. But I have to be willing to see the low, because this is the right thing to do. You make yourself crazy if you live in the uncertainty of it. So you just say I'm doing the right thing. And you continue to do the right thing.

Tziporah 51:53
I mean, earlier you talked about sometimes in fear, people get paralyzed, right? Like that scenario that you're raising now is the same kind of thing. You just have to do the next right thing as best you can, right. And then if you come to learn later, with new information, oh, maybe that wasn't the right thing, then you manage the next moment with the same thinking, like, I just got to do the best thing that I know how to do right now. And it's true here, too. It's true with diabetes all the time. But it's true here, too. My fear was not going to keep me from getting surgery or having radiation or swallowing this pill. Yeah. But if I come to learn, oh, well, that wasn't right. Or now there's new information, I'll take the new information and then do the rightest. Next thing than

Scott Benner 52:36
the best example it because of the lack of oxygen, and the speed and, and the force that it takes to put a person into space. It's a perfect example for this. Because we've shot people, humanity has shot people in the space. However many times they've done it, and overwhelmingly the those people have come back. Some people died at launch. Some people didn't get off the launch pad, some people got up into the sky, but never made it to space. Some people got out into space, but couldn't make it home. But overwhelmingly, most of them came back. And they all did the same thing. They did the next most important they kept making the next most important decision. And and that's what that's what healthcare is. That's what life is you. You don't you just keep making the best decision available to you. And even if it's a chess game, like ever, you don't ever see, somebody will lay over their queen and give up right? That can they'll say, well, in five moves, I was done. I would have played out the five moves. Yeah. And I think of it that way, like just keep going. Because because the odds are, you're gonna play right till the end of the game. And so there's just no value in throwing your hands up and giving up or saying, I'm not going to do you know, I'm going to take a big risk here, when I know this next good. I don't know, I don't know if that makes sense. But you just I think of life as like, I'm in a tin can and there's no atmosphere around me. And I just keep making the decisions that keep me alive.

Tziporah 54:15
So well. I mean, it sounds like you're taking a play out of your mom's playbook. You want to go down swinging?

Scott Benner 54:21
That playbook. I gave that to my mom. So sorry, I'm trying to

Tziporah 54:25
like give props to your mom. And I think I definitely am the kind of person who wants to know the end, right? I don't mean like, oh, how am I going to die? Or when what I mean is, I want to know, what's the endpoint of this thing. So if I do this, then what happens and then what happens next? I want the map right? And in so many ways, that's about like, having a feeling of power or control to help manage fear, but there's so much stuff that you can't know in advance. So the amount of trust that I have to put in somebody else like a surgeon or medical and call Just for whoever to say, Okay, well, we think, you know, the odds are really good that this is going to end up, okay. And I'm like, okay, but I want to know how this story ends. In fact, when I wrote to you, you and I joked a little bit, and I was like, Oh, maybe I shouldn't record this until I know there's a happy ending. Because like, I'm not at the end of the road with it. Yeah, right. And even as I got ready to sit down to data record, I thought, Okay, well, what am I going to focus on? What am I talking about? Because this isn't really done, right? And nobody's going to come out and be like, Okay, here's the point at which we think there's cure, because there's already evidence that my body is doing wackadoo things. So this particular thing this Whack a Mole situation could be over with for now. But like, be vigilant. So if I can't have the map, if I can be in control of what's going to happen next, the only thing I have left is to do the next thing as right as I can, right.

Scott Benner 55:54
And fold it into that is keep living your life the same way to you have children and you know, you have your you're married, you have like there's a life here, like just you keep doing the things with the intention of making it till the end. I don't know if it's, it's just the cancer that that speeds up the idea in people's heads. This is what life is you're just experiencing it now on a what feels like a faster timetable, even though that's very well may not even be true. Being able to see the having the feeling that you see what happens at the end, it gives you that feeling like it's coming, it's coming, it's coming. But we don't think about that day to day, like there's some listen that someone's listening right now, who 25 years from now is gonna get hit by a car and killed. Oh, it's true. And so like, but that person will never live their life as if that's going to happen. If they did, that would be insane. And so you don't have to think about it, because it's not real. But it doesn't mean it's not going to happen. And you're forced into a situation where it it's very real, and it feels like it could very well happen. And the secret, I guess the conundrum is how do I take the next step? Imagining No, this is not going to be what happens? Because it doesn't matter. It's all in your eye. This sounds crazy. It's all in your head. Like it's worrying about. I mean, what is it? I said on that podcast? One time, I worry is a waste of imagination, right? But the problem is that this point, you're not just in a worry situation, like there's real things happening in front of you. Yeah. And so how do you find the balance?

Tziporah 57:36
Well, I'll tell you what, you know, I I've had diabetes a long time. And if you were to have asked me prior to all this cancer stuff, like what's going to be the thing? I mean, it's morbid, right? Who would sit down at a party and ask me this, like, how do you think you're going to die, but I would have said, there's going to be some complication, you know, a cardiovascular thing, something's going to happen, because I will have had diabetes for a long time, no matter when the end of the road is for me, the thing that was hardest has been hardest, so far about this thing with breast cancer is that I didn't see it coming. Anything related to diabetes. If I go and see a cardiologist and they say, Hey, listen, you know, I really see evidence of diabetes in your large vessels. I will be like, Yep, okay, I knew that was coming. Because I've had diabetes almost my whole life. Hopefully not. Hopefully, that won't ever happen. But like, I almost could have expected Oh, it could be something like that. I don't want to be blindsided. So this thing about, like, none of us can script how anything goes really, there's so much variability and so much that's out of our control. But I back to an earlier point you made like, I have enjoyed the feeling of like, Oh, I got diabetes. I know what to do with this every day for as best as I can do for as long as I'm going to do it to prevent those catastrophic things from happening. And even if there is a complication, I know how to handle it. I know who I would see, I know what I would do. I'm gonna get the best treatment I know how to ask for. It's just that I didn't see this coming. Yeah. So in that like blindsided feeling I'm like, someone better give me a freakin map because I do not like this ride.

Scott Benner 59:08
So because that map doesn't really exist. What does that what do you think you're gonna do?

Tziporah 59:13
I'm gonna do the next thing, right? Like, I'm gonna go to all my appointments. I'm gonna go for my surveillance and my follow up scans. I'm gonna take this pill every day, even if I have hot flashes. I'm gonna keep managing diabetes, I'm gonna whack them all the other stuff that pops up. You know, I have not I've not really walked up to like, is there some big life thing that I want to do differently now that I have felt like there was some threat like once the pathology came back in? I went into this like rabbit hole of like, oh my god, I'm going to leave my daughter without a mother. And whether that was based on reality or not, I was so terrified by what I read. But the only thing I did differently with that was like probably hug her a little bit longer. You know,

Scott Benner 1:00:01
is it because you don't want to make her upset? Is it because you don't I have this thing where my son left a couple of months ago to take a job. Once or twice a day, it occurs to me to tell him that I miss him. And I don't, because I don't want him to worry about me. Right? And at the same time, then I think, but I don't want him to think I don't miss him. And it feels like oh, it's like, it feels like a carousel, I don't know when to jump off of, you know what I mean? So I acted like an adult, and I waited a certain amount of time. And, you know, so that I didn't look like a lunatic who was like, I miss you, like, you know, cuz I don't feel that way. I just miss him, I miss him being here. And I just took the opportunity a couple of months after he's gone, and actually just sent a text because I figured, like, that's how they talk to each other. Like, if I'm gonna get on the phone with him, or look him in the eye and be like, I miss you, buddy. He's gonna be like, Well, what's happening? Like, are you dying? You know? So I just sent a text to both the kids at the same time. And I said, Hey, guys, I want you to know that I miss you. And I'm very proud of both of you. But I want you to know that we're okay here. Like, just because we miss you doesn't mean mom and I aren't alright. And it just, you know, I'm happy for what you guys are doing. And, and I just, instead of wondering what one small sentence would do, I just gave the whole thing to him. You know, I was like, let him know exactly how I feel. Not just a piece of it. But the entire thing. I don't want to just be telling you, I miss you, I'm afraid it'll, it'll make you feel bad. And I don't want you to feel bad, I want you to be doing what you're doing. And I imagine that you get that same situation, like you probably, there's probably part of you that just wants to like grab everybody put everybody on a loveseat and just sit there. You know, and you can't do that. Because it's bad for them. It's bad for you. And it's, you know, and very well might not be necessary. I have another question. Answer that then is my other question.

Tziporah 1:01:57
My daughter is 12. And, you know, this, like, I I'm gonna leave her mother listening like I, my game face with her was, everything's gonna be fine. This is all going to be fine. I'm gonna go get this surgery, everything's gonna be fine. I'm gonna have another surgery, everything's gonna be fine. I'm gonna get radiation and everything's gonna be fine. I'm going to take this medication. And some part of me has to believe it enough to tell her right, because I really can't, like I can't for her. And I can't for me really entertain the possibility that it's not going to be okay.

Scott Benner 1:02:35
Yeah, there's no benefit, honestly. I mean, where would it get you?

Tziporah 1:02:41
I mean, there's a part of me, that's also like, okay, but that's real. I'm sitting here crying by myself, because I'm scared that something terrible and catastrophic is going to happen. And I won't have told her all the things I want to tell her before she turns 13. Like, yeah, what you said about how to gauge like, how much is the right amount? How brave do you need to show yourself to be how authentic can you be about some of the softer stuff and, you know, I just tried to figure it out with her. Like, I'm gauging how much she can handle. I'm stopping when it looks like she's had too much. And I really did believe this is all going to be okay. And even if it's worse than I thought, or even if it's, there's more down the line, like, we'll make it okay, we'll get okay. Because by the time we get there, we will have figured out how to be okay.

Scott Benner 1:03:26
I once thought, Oh, I am going to write another book. I'm going to end up writing down everything I wanted to tell my kids that I forgot to tell them. And it would be creepy. If I just wrote it down and handed it to him. Maybe I'll write a book about it. And then I thought writing a book so difficult, maybe just make a podcast about it. Either way, but it really is the it's a conundrum. It just there doesn't seem to be a win in it. Like, you know, as my son was leaving, I was like, Oh my God, there's so many things I didn't tell you like, and then I thought, I'm never gonna tell him these things. Like, I'm gonna stay involved in his life. And when I see an intersecting of moments, I'll say a thing. And hopefully I don't get too old, too fast. And I can stay on my toes. You know what I mean? And we do that, like, you know, there are days like, I don't talk to him. And I think I should have called him today. But he's like, going to a job and coming home and cooking for himself and cleaning his place. And, you know, like, he's, he's learning how to be a person by himself. He doesn't need to talk to me every day. I need to talk to him every day. He doesn't need to talk to me every day. And so, like when we finally do talk, and we kind of go over things, and you know, he'll, he'll ask questions, and he's like, I don't know, what do you think this means, you know, about a work thing or something like that? And I'll say, Well, I know how it seems to me, but you tell me what it feels like to you. And then he tells me and I go, that seems reasonable to me, or I think I would pay more attention to this part of it or, you know, and, and then there's this odd moment. This is the worst. There's this odd moment when you're done talking If you don't want to hang up, but there's just nothing left to say at the moment. And you're like, Alright, I'm gonna go and I'm like, Okay, I'm gonna go back home, I'm gonna go back to work. And then we're like, bye. And it was over. And I think, oh, he was right there, I should have thought of something else to say.

Tziporah 1:05:16
But it'd be real weird. If you're like, can I just listen to you breathing?

Scott Benner 1:05:20
No, I'm not doing that. Although he and his girlfriend watch movies together over FaceTime. Because they both took jobs in different cities. And it's amazing. So here's my question. Are there days when you forget about all this? And you get back into real life like petty minor things? And does does the cancer make you ever think? Why do we care about this? Where do you where do you find that you fall back into it? And it's very comfortable just to worry about things that you now know, don't matter? Because you now have, by the way, you now have, you have perspective, from a number of angles that people don't get perspective, from you have perspective, from a diabetes perspective, you have diet, you have perspective, from a cancer perspective, you're pretty high up on the perspective level at this point. But doesn't that does that still not mean that you don't walk into the kitchen and say something like, no one cleans these dishes, but me? Like, like, you know, or like, how does that all go?

Tziporah 1:06:14
I think I've definitely had less tolerance for things that someone else is like, Oh, this is super important. And I'm like, okay, but it's not. I mean, there definitely has have been stretches of time like that. Today. I think I'm, I'm probably still too close to be fully back in the business as usual. You know, I've got scars that haven't fully healed. I've got, you know, stuff from radiation, things that are just like reminders every day when I get out of the shower. I'm like, oh, yeah, this is like really pretty recent. I think I had a fantasy that it was just going to be alright, X number of months of treatment, and I'll be on the other side, I do think I am quicker in my mind to think this isn't really that important. What I haven't quite mastered is how to finesse, like navigating that with other people. You know, I don't want to be

Scott Benner 1:07:04
Oh, I know what you mean. Like it seems over to them, but it's not over to you. Yeah. You're almost like a, almost like a person who came home from war. And everybody's acting like it's over. And you're like, I'm still having bad dreams. Yeah, yeah. I brought it up. Because my mom the other day was like, you know, she's at and you know, she's, she's living in a place where she doesn't have a ton of mobility. Like, she can't just run out to the store if she wants to, and stuff like that. And so my brother works a weird shift. And he can't call her back right away. And she's right on the phone to me. She's like, nobody's calling me back. And I'm running out of milk. And I'm like, and I'm like, Alright, mom, and then we're talking about it and everything. And I wish he wasn't at, because what I wanted to say to her was Mom, do you remember like, last year when we all thought you were going to die? And you thought you were going to die? And it looked like you were gonna die. What are we doing here right now? Well, who cares? You know, like, like, let's get you some milk. Like, just figure it out. Don't be mad at people. Like let's just get in. And so I talked to my brother and I was like, Hey, you should just who cares? Like buyer? 20 gallons of milk? Like just put it piled up on the walls, if that's what you want, like, who cares? And he's like, Well, she gets like stuff where she lives. And I was like, Yeah, but she doesn't always want to go to the cafeteria. And he said, Yeah, he's like, Well, she's not that much money. I'm like, Brian, it doesn't matter. Like, like, just give her milk. Like she almost died. She's 80. Let's just let her do what she wants to do. And he agrees, like, don't get me wrong. He's not like, my brother's not like withholding milk from my mom. But, um, but it's, you imagine what a weird power move. But um, it's just that idea of like, this isn't important enough to be upset about, like, we saw, like the edge of death. Like, just let's just do what makes her happy. Who cares? You know? Anyway, like, it's just interesting to watch. Like, my mom, like, she slipped back into it. I was and, and like I said, if she was younger, I would have said, Mom, I don't think this is something we should be worried about. Because you cheated death. Like, let's be happy and enjoy every moment. But it was funny how quickly she slipped back into like, well, I don't know how I'm going to get my cereal. And I'm like, Okay, mom. I don't know. It just, it happens to like your kids move away or saw anything happens in life. And for a minute, you're full of this like perspective in your face. Yeah, so I guess you'd be excited for the time when it would go away.

Tziporah 1:09:27
I will be excited for the time when it's not on my mind every day, I would think I guess so. You know, one of my favorite features of my relationship with diabetes is that I just have gotten to know it well enough and how it behaves that I don't I don't worry about it every day. I really don't. You know, it's like my pump is set my decks comes on point like every everything's fine, right? And it is humming along in the background. It's always there. It's not like I ignore it, but it's always there. It doesn't require a lot of like active attention, right? So what you're describing is like that moment where this stuff that's a threat or that that Stokes fear moves into some background activity on the processor, and the linear back to worrying about regular BS.

Scott Benner 1:10:12
Yeah, I hate the regular stuff. Honestly, I don't want to be always upset and worried about big ideas. But I also just, I'm not a person who wants to be like, bitching that somebody didn't replace the paper towels yet. I mean, like so. Anyway. Yeah.

Tziporah 1:10:26
I think that's a good move. I mean, like, if it helps you to clarify what's really important, this thing with your mother? Like, that's a good outcome, right? If it helps you to clarify this stuff is peddling and isn't really worth it. That's not worth a fight. But that thing is like, those things are clarifying moments that I think is gonna be like, the best gift of something that's really scary, especially with your health.

Scott Benner 1:10:50
Yeah, no, I mean, it is one of those things like, right, if it doesn't get you, you do come out the other side with a clearer understanding of the world. You can Yeah, yeah, you're right. Yeah, I guess we're lucky

Tziporah 1:11:01
if we choose to see it. Some people don't.

Scott Benner 1:11:04
I don't even see it as something not worth being upset about. I almost sometimes see it as something not even worth. I don't know, knowing exists. Just, you know, like, what are we doing here talking about? Like, like, if you know, if mom wants this, this and this and her house at all times, and it goes bad because she doesn't use it. And we can afford it? I don't know, I don't know what we're talking about her. You know, like, just, I don't I don't even want to think about it. Like just get it done.

Tziporah 1:11:29
So I am pretty sure that 20 gallons of milk would go off. Go back real quick. I

Scott Benner 1:11:33
was making I was making that up. But I think she wants a pint or a half a gallon or something like

Tziporah 1:11:39
that, or a cow get her a dairy cow call it a day.

Scott Benner 1:11:42
She's in Wisconsin there probably one walking around outside. She just go find yourself. And it's a really, honestly, when she was talking, what I really heard was, I don't have enough control over my life. And I just I'd like to be in a little more control of things. And I thought and that sounds like Okay, good. Well, let's get because I told her I was like, Mom, listen, if you want, I said, we can get you an app, you can order food online, they'll bring it to you. And then my brother, my brother goes, Do you think mom's gonna be able to run that app? And I was like, Oh, that's a good, that's a good point. She's gonna end up, she'll buy a real cow or shelter house. And I still I said to her, I'm like, Well, I said, Mom, I'll put the app on my phone. And you and I can just do it together. Like we'll get on line. It'll tell you what you need. Now, I'll make sure you got it. You know, however, I'm like, This is not an insurmountable problem. Like, let's, let's, let's not be upset, you know,

Tziporah 1:12:33
she's lucky. How so? She's lucky that you see her and what she needs and what really matters as clearly as you do.

Scott Benner 1:12:40
I don't know what the point is. I'm trying to I mean, she's at you don't I mean? Like, what are we gonna, we're gonna fix something. Now. You don't I mean, like, it's, she's got, she's got her thing going. And there's things she needs and my feelings about them or someone else's feelings or how it makes you know how her situation makes another person feel it's just not important. Just doesn't matter. You know, something's gonna happen one day, and you're going to be back in the reality of it. And the first thing you're going to think is, oh, I shouldn't have made such a big deal out of this thing. It's just just, I don't know. Just try to remember that the moments when you're not scared for your life, I guess. Right. Anything we didn't talk about?

Tziporah 1:13:24
There it is, again, my imagination trumpet? I don't I don't think so. I was better with you this time than I was last time. What do you think happened last time that was different. Your voice

Scott Benner 1:13:34
throws me. You're so measured, but you're not slow. And I needed to lead your I should have let your words breathe more or less time. All your hot takes are smart. And you can talk without thinking, which I find to be a very, I don't know if that makes sense or not. Interesting. Yeah. Like, do you ever hear me go off on a tangent and you're like, Wow, he's really talking. But then you listen and you think, wow, that all made sense. Yeah, I don't know how that happens. So if people aren't speaking quickly enough, I can make the assumption that they're making it up as they're going along, instead of there being thoughtful and choosing their words. So whereas I use extra words I don't need because I'm talking while I'm while my brains forming thoughts, you form your thoughts and then you speak. I remember getting down with you last time and realizing I You're also not monotone. But you're you're very even when you speak. And there's something about that that makes me feel like I have to it can make me feel like I have to fill the space with excitement. If that makes sense. And this time I didn't I knew you were going to deliver. So yeah, I was able to just sit back and let it happen. I know that that's very inside baseball on on, on hosting a podcast but And I've been learning it for years. I used to make the mistake more with Southern people because they speak slower. And or they can speak more slowly. And I had trouble with the gaps of silence. Yep. Like, and so I'm better with that now, too. Anyway, does that did you feel that when we spoke the first time, I didn't

Tziporah 1:15:23
feel it so much? The things that you're noticing now in retrospect, I can see it. But it also felt like a very easy conversation. It felt well paced that felt balanced. I didn't. I didn't feel like oh, Scott's gonna fill the space here.

Scott Benner 1:15:37
No, it wasn't like that. It's me being ultra aware of it. Like I'm always trying to fine tune the conversation. So that it's ultimately that I need it to be listened double enough to that somebody wants to make it through the whole thing. Oh, for sure. Yeah, cuz I don't know what the point is of you and me feeling good about this when it's over. But everybody else tuned out 10 minutes ago? Absolutely. Yeah. And, and so I'm always kind of just reevaluating it, you are easily a person who you do not match my, you don't match my energy. You don't match my speaking style. And that should mean that we're not a good conversation together. But you and I are a good conversation together. Our intellect is is similar. Does that make sense?

Tziporah 1:16:19
Yeah, yeah. I'm gonna take that as a compliment. So thank you.

Scott Benner 1:16:23
I was complimenting you. Not me. I was like, I'm lucky to be here in this Congress. I feel like I'm lucky to be in this conversation with you. Thank you. No, of course, not. But it seriously, I had a really interesting, I'm gonna let you go in a minute. But I had a really interesting conversation yesterday with a gentleman whose kid was diagnosed in the last couple of years as a private conversation. And they're in the position professionally, where they were able to, I mean, I didn't have all the details sound like some money was made. And they were able to kind of walk away from their job. And they, they want to put their efforts, their professional efforts into helping people with diabetes. And this person has been kind of like on a, almost like a talking tour, meeting people who help people with type one and, and trying to figure out like, what, what's missing in the space and things like that. And we must have talked, I mean, I jumped on the phone. If I'm being candid, I get jumped off on the phone to be polite. And that, and because his previous work experience, I've found impressive, so I thought this won't be a waste of time. And then we got on so well. I'm afraid to look at the call timer from yesterday, I think it's possible, we spoke for 90 minutes on the phone. When I got done, I was just very impressed. You know, like really impressed with the pace that he spoke at and still made utter sense. Every word that came out of his mouth. And there are moments when I could feel that he's better educated than I am, because he didn't farm for for words where I sometimes lose my words and things like that. And then I thought, Oh, maybe I shouldn't went to college. Like I actually thought that while I was talking to him, like maybe I should have gone to college. And but yet, he was complimenting me for being honest, where he wasn't running into a lot of that these conversations, a lot of people were protecting their position and, you know, saying high minded things that weren't going to actually amount to anything for people with diabetes. And, and it was just, it was really I said to him afterwards, I was like, I really enjoyed this. You know, I don't have a ton of private conversations that I walk away from, like, I actually that's one of the secrets about the podcast. I really love talking to people. Yeah. And I don't know, I don't get it enough in my life. So yeah, this is a good excuse to do it.

Tziporah 1:18:46
Well, I think it's awesome. You've turned it in that thing. You've turned it into something that just is like, like pretty remarkable and super high value to a lot of people.

Scott Benner 1:18:55
Finally my dad said somebody was going to punch me in the face, but he was wrong. I mean,

Tziporah 1:18:59
like that story has not been written to the end yet. It's possible. I'm gonna punch you in the face.

Scott Benner 1:19:04
Someone's gonna do it eventually. But what is cool, say all the time, he's like one of those podcasts people is going to kill you.

Tziporah 1:19:10
So please don't even put that out there in the universe.

Scott Benner 1:19:13
Can you imagine? I mean, that's not joking about it. Yeah, no, I It's funny, because even when you look back on it, I am adopted. I've said this on the podcast before, like, my parents would have conversations. And I'd be like that I could think in my head. I'd be like, that's not the right answer. Like how are you people not seeing the right answer, you know, and it was all very confusing. And I always thought of it from my perspective. It wasn't till I was older than I thought of it from his perspective. Like my dad is an example thought I was sarcastic. I was just thinking more quickly than he was. And our thoughts weren't aligned because we're not genetically linked in any way. And he just thought I was he thought I was an asshole. Like he really did. He was like, What's this kid being a jerk for all the time? And I'm busy going like, Hey, I think we could do this better or, you know, why are you not considering this? And I look back now and I think that's all it was just a week or two. We were incompatible, honestly, like, intellectually incompatible. It's fun to talk to people and not care about that. Yeah, like, that's what I love about the podcast, like there have peep, there have been people who have gotten on in my real life, I might not talk to this person. And what a mistake that would be. Yeah, you know, and then you sit down and talk to them and realize that everybody, everybody's story is incredibly valuable and their perspectives are and the way they think through things or sometimes don't think through them is, is it educational for the people listening and often for them as well. So anyway, I wish I came up with more big words is what I was just saying.

Tziporah 1:20:49
Yeah, you don't need big words. You don't need that.

Scott Benner 1:20:53
In my very first experience like this. My wife was kind of the youngest person in her company when we were really young. So we got invited to like a party at someone's home, where everyone was just older than we were. And it was a little weird, because it's just like, we were raising kids, like everybody who had kids Cole's age was 10 years older than us. So you always you felt like an outsider. Like, you're like, I don't belong here, you know, but we were at this party. And I just was like, What am I going to do? I can make a stand in a corner like Kelly's over there. Like with the women folk, I should go outside where the men folk are. And we were just out talking, and I don't know what I have no idea what happened. And at the end of the night, the host of the party, who was a gentleman, much older than me, pulled me aside and said, I really enjoyed speaking with you. And I was like, Oh, thank you. And then I didn't think anything of it and left, but now I look back and I realized he was shocked at somebody younger than him gotten that conversation hung in that conversation. Yeah, yeah, I didn't know that at the time.

Tziporah 1:21:57
So I thought you were gonna say punched you in the face. So this was a much better end and gave me

Scott Benner 1:22:01
a cigar actually.

Tziporah 1:22:03
Now that's a big deal. Yeah. Yeah, I

Scott Benner 1:22:05
thought so too. So this was very interesting. Anyway, this is not about me, it's about you. And let me end this by saying I will think of you and I hope nothing but the best. The you know, continue to find good answers and follow your path. I I'm I'm looking I'm in. I'm on your side and in your corner, that's for sure.

Tziporah 1:22:27
I appreciate it. I'm gonna do my best for you and your mom, too, by the way.

Scott Benner 1:22:31
Oh, thank you. Yeah, she's doing she really is doing terrific. So

Tziporah 1:22:34
yet or some milk for God's sake. Yeah. Poor woman.

Scott Benner 1:22:37
It's not like she's even lactose intolerant. What do you think we should call the episode? I have my answer already.

Tziporah 1:22:44
Oh, my God. If you say imagination, trumpet, I'm out.

Scott Benner 1:22:46
It's insightful and fun. Oh, what do you think I got it. Oh, no. No, whack a mole. Love it. There we are. I love it. I only wrote down one for you. This is it. This lady story is about fighting the fight in front of her. We'll call him likable. Yeah, great. All right, hold on one second for me. Okay. Okay, thanks.

I want to thanks for for coming on the show again and being so terrific. I also want to thank us Med and remind you to go to us med.com forward slash juice box or call 888-721-1514 Get your free benefits check now. And don't forget cozy earth.com. use the offer code juice box at checkout to save 40% off of your entire order. Check out the private Facebook group Juicebox Podcast type one diabetes. And of course, you can visit all the sponsors in the show notes of your podcast player or juicebox podcast.com. There's links there to everybody and when you're supporting sponsors, you're supporting the show. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast.

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