#775 Don't Knock Knoxville

October 19, 2022Scott Benner

Rita got type 1 diabetes from a cancer treatment.

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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 775 of the Juicebox Podcast.

On today's show we're going to be speaking with Rita, she was diagnosed with type one diabetes at age 57. She's 63 Now, and she got her type one diabetes in a rather unique way. It was brought on by a therapy she was taking for her cancer. Her story is rather unique and incredibly interesting. 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 healthcare plan, or becoming bold with insulin. If you're enjoying the Juicebox Podcast, please share it with someone else who you think might also enjoy it. It's the best thing you could do for the show. Share it, help people listen, help them find it in Spotify or Apple podcasts or wherever they get audio. If you're a US resident who has type one or is the caregiver of a type one, please go to T one D exchange.org. Forward slash juice box and complete the survey. When you complete the survey, you're helping yourself people living with type one diabetes and the Juicebox Podcast T one D exchange.org. Forward slash juice box

this show is sponsored today by the glucagon that my daughter carries G voc hypo pen. Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored by the Contour Next One blood glucose meter is a great meter that is easy to carry, easy to use. And just lovely to be around. Have you ever had a device like that you just like I like holding this thing. It works. That's how I feel about the Contour. Next One blood glucose meter. It works. And I don't mind holding it. Here you go. It's high praise for a blood glucose meter. Damn things accurate and easy to use what else you want? Contour next one.com forward slash juice box. links in the show notes links at juicebox podcast.com.

Rita 2:22
An early riser. I just don't get to work

Scott Benner 2:24
early. I don't usually work that sort of like no it's not crazy. Don't get me wrong. But last night I sent Arden a text at school at like 730 And I was like hey really stay on top of your blood sugar because I want to go to bed on time. And you know like I'm worried right? working away tomorrow. Baba bomb. She's like Oh, yeah. And then. I don't know what Yeah, right? At 10 o'clock, you know, I was like, so then I'm texting. I'm like, Hey, you have to Bolus and she's just not answering. I'm like, oh, no, sorry. And I realized that I think she's asleep. And, and her blood sugar's kind of going 161 70 And I'm like, gosh, so I remotely Arden uses loop. So I'm remote. Yeah, I'm remotely like jacking up her basil and and it's setting lower targets and all the things that I can impact from from the Nightscout from afar. Yeah. And watching, I'm texting like please just wake up just I just needed a Bolus, like a half you don't like please just Bolus

Rita 3:31
so So what time does that all end?

Scott Benner 3:34
Oh, I go to bed at 230. And then, you know, so like, it's okay, I'm gonna get up at 730. I'll let the dogs out and take a shower, blah, blah, blah. And at seven, like five of seven, I get a text. And it just wakes me right up. And it's nonsensical for my mom. I'm like, Mom, what are you saying? And she goes, Oh, she goes, nevermind, this was a mistake. Go back to bed now, Mike. Yeah, you're

Rita 4:00
not gonna go back to sleep. So I slept four

Scott Benner 4:02
and a half hours. Oh, well. And then I went downstairs and I was like, Oh, the dogs look rested. That's nice. And I took them out. And you know,

Rita 4:11
yeah, you could nap after the call. Well, maybe it's

Scott Benner 4:15
possible. My son was like, I need to get tires on my car. And I'm like, Huh. I don't really know how to do that. And I was like, I just didn't do that today. And I was like, oh, yeah, sure. I'll do that today. Yeah, but yeah. Anyway, I'm sure I'll be fine. Or one day, it'll just kill me. This is the day who knows?

Rita 4:36
Yeah, yeah. A parent job never ends does it? It's like,

Scott Benner 4:40
apparently not. Parents. Apparently. It's funny. Arden's biggest problem at school, all the things that we were, I'm sorry, read a word recording just in case this ends up being okay. Yes. Of all the things that I was ready for. The one thing I didn't consider is that the quality of The food if the college would not be as maybe pure as it is, yeah, at home. Yeah, that's where we're having problems. Yeah, it's interesting of all the things.

Rita 5:11
It's like, I guess, eating out all the time, right. I mean, considered, I think she's not having a home cooked meal. And it's like, she's eating out all the time.

Scott Benner 5:19
She's, you know, she's in their cafeteria, and, you know, yeah, picking and you know, and it's buffet style, etc. So, anyway, it, you know, is it going to be hotter? Is she gonna have more activity? Will it be stressed all the things I thought I was ready for? The one thing I didn't think about was, what if the material failed? Crappy? You know what I mean? So anyway, do you have any questions or concerns before we get going?

Rita 5:47
No, I don't think so. I think I'm ready to go. Sound is good for you.

Scott Benner 5:52
Oh, sounds perfect. Wonderful. Absolutely. So normally, I would ask you to introduce yourself, but this is Rita.

Rita 6:03
Yes, this is Rita. How old are you? I am. I am 63 years old. And I was diagnosed with type one at the age of 57. I live in Georgia. And I am a cancer patient which led to the type one diagnosis my treatment did. So I've got a story to tell. And it is it's quite rare. But I know there's a few of us out there that have gotten type one as a result of immunotherapy. Yeah, so that's my, that's the gist of my story. Yeah,

Scott Benner 6:38
that's something Well, let's pick through it then. So okay. You have children.

Rita 6:44
I have two children. They are 33 and 32. They are adopted. So my husband and I adopted them. When they were just under three years old and just under one year old. They are siblings by birth. And so I adopted them. I traveled to Romania, and back, you know, after the fall of the Ceausescu government, and I traveled there by myself and found these two wonderful kids, and they've been with me, or with my husband and I ever since they are our scientists, married, I have two grand kids. And our daughter is on her own and they're doing lovely,

Scott Benner 7:26
great. Were they siblings in Romania? Or were they to they were they were?

Rita 7:31
No, they were. They're actually brother and sister, like biological brother and sister. So great for them to have each other. And yeah, so that's, that's our family. My husband and I, we were never able to get pregnant. But in the grand scheme of things, it didn't matter, because I got these two wonderful kids. Wow,

Scott Benner 7:49
great. You knew how to do this x and everything. It just didn't work out. Yeah, exactly. everything by the book. That's what I was wondering. You know, it's funny, as you're introducing yourself, and you told me, You're 63. I interviewed a woman I interviewed a woman yesterday was 62. And I asked if she had children, and she said, four, I think. And the last one. She said, well is, you know, my foster child. I said, Oh, how did that happen? And she tells a story about her daughter's friend whose family just fell apart. And her daughter came home one day and was like, we have to take her in. And yeah, and that was like when they were, I don't know, 15 or 16. And now they're in their mid 30s. And that's like, oh my gosh, that's crazy. It's interesting to hear.

Rita 8:36
It's wonderful. Yeah, it's wonderful. And it just shows the, how much a person you can love. Like you just can just love. It doesn't have to be I find it doesn't have to be from me. I just they're just, you know, two great kids and my grandchildren. I am so grateful. So my first grandson was born in August of 2015. And I was diagnosed with cancer in December of 2016. And so the diagnosis was really, first of all extremely unexpected. It is so I don't know if I told you I have been diagnosed with you coastal melanoma in the vagina. So basically, it is a type of melanoma that grows in the mucous areas of the body. So vaginal rectal nasal. You can get it in the eye. And anyway, those are the primary so if all melanomas 95% are cutaneous 5% are mucosal. And of that five, I'm gonna guess. Less than 2% or vaginal. So, this diagnosis, a lot of things sort of, when you hear my story, a lot of things sort of I'm lucky and somebody is looking out for me whether that'd be my higher power or I don't know, it's just the way things have worked out. I've been very fortunate. I mean, really, I shouldn't, I shouldn't be here the diagnosis. I was never told how long I had. But because I didn't ask, I didn't want to know, I had to focus on the positive, but it was not. I didn't know I didn't get the impression from the doctors that this was very helpful. So

Scott Benner 10:26
wasn't very Laissez Faire in the in the room, they're like, well, we'll just work right through this, it'll be fine. It's all about I mean, in an orifice of any kind, I just have to think, like, That's craziness, because and I'm going to want to hit Okay, so hold on. I'm gonna go backwards just for two seconds to tell you something about, about loving people and adoption, just very quick. I'm adopted. As you probably know, if you're listening to the show, and my mom, right, my mom is 80 years old. And as we as we record this, we are one year in one day, past us learning that my mom had cancer. And she had a very, very large tumor, probably grapefruit size on an ovary. She had some cancer in her uterus. And she was given a full hysterectomy at 79 years old. And this came, I'd say, right, as my youngest brother got married, and as my mom was planning to move across the country to live more closely to my middle brother, so he had, he had moved to, you know, college and, and never come back. And she's like, you know, I'm gonna spend the rest of my end of my life with, with Brian. Yeah, and so we're kind of working towards all that my brother's gonna get married, and then my mom's gonna leave. And instead, we're carting my mom to my brother's wedding, in a wheelchair, and we're all standing off to the side, talking to each other going, Hey, Mom looks like she's gonna die. And it came out of kind of nowhere, you know. So we got her right off, we got to write off to a doctor. And she had this procedure, after we had to pick through a number of doctors who all were happy to just manage her into the grave as the best way I could put it, you know, like, nobody wanted to give a 79 year old woman this big surgery, and she's gonna die. And bah, bah, bah. And just Luckily, my neighbor's son grew up to be a surgeon. And I contacted him and he said, I went to medical school with a girl who's, you know, in oncology, ob now, and a couple of text messages later, my mom had a surgery. And, and just the other. It's been, it's been about two weeks now. My mom had it was time she made it through, they gave her a clean bill of health, and you know, she's gonna move to Wisconsin. That's fantastic. Yeah. How do you get her there? Because she can't sit too long. She can't, you know, she needs to get to a bathroom like, so we're like, well, we can just drive her a plane seemed like it wasn't a great idea. We had toyed with the idea of taking her in an RV because there'd be a bed and a bathroom with us. That turned out to be very cost prohibitive. And, and a big and kind of a mess logistically. And so in the end, my mom and I ended up on an Amtrak train across the country together in this little bed, and, and, you know, we spent this day and a half making this trip. And when we got there, my brother was going to pick us up at Union Station. And then I was literally just going to get back on a plane and fly home. So my brother was a little late. And my mom and I are just sort of standing there. She's in a wheelchair, and I'm, you know, I'm standing there and we're talking and it's this odd feeling that nothing's different. We're going to, like, you know what I mean? We're just talking the way we always have, right? And yet, yeah, in about 45 minutes. I don't think I'm ever going to see her again. Or if I do, it's going to be very, you know, sporadic at the best. And yeah, and the way she hugged me before we laughed. My whole I'm telling you this whole story to tell you that the way my mom and I hugged each other before she laughed. I would dare you I would dare you to feel that and and think that she didn't love me the way she loved my brothers. And I'm absolutely I'm the only adopted one you know, and me. me right back to her obviously. So, yeah, I think it's really it's lovely. But anyway, I have so I have a tiny bit of context for what you're about to tell me that I didn't have a year ago so I'm going to do my best to keep up. Can you just tell me when you first noticed the issue and what and how you noticed it.

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Rita 18:17
it was September of or I should say August of 2016. And I noticed I go to the bathroom and I wipe and I wouldn't even say there was blood there was something very light pink. When I cleaned. I said oh that's that doesn't look right. And given my age I go you know, I'm going to call my my primary. I call my primary doctor. I go in to see her right away. And she says well, I can't like as a primary. I can't do an examination down there but I'm going to send you to a gynecologist. I had one but mine had retired. So she put me through they saw me right away. They examined me and they said oh it's probably vaginal dryness. And they gave me a cream and they sent me home and this is now the month of September and I'm doing this vaginal cream. My husband and I had a trip planned with friends to go to Italy I go to Italy this bleeding has not stopped it's like it's always there and it goes away maybe for a day or two it comes back so when it was supposed to they said within 30 days should resolve itself so now it's November and they renew I made I gave a call to the doctor they renew the prescription but it's the month of November and I'm saying I don't know I want him to see me again and I go back in and that morning of that appointment I wake up and I go take a shower. There is so much blood and so much clotting and it was just gross. So I My husband was already off at work. I just get myself dressed and I go straight to my appointment though. I'm about three hours early. I didn't really care if I go, somebody will see me and they did. And they did a biopsy and send me home and they said, Okay, maybe it was, you know, just some clots that were blocking it up. I don't know, whatever. I go home. And I'm still thinking nothing of it. And then they get the results. They call me now we're in December, and the PA calls and she says, Well, we've never seen this, but there's actually melanoma in your vagina. And we're running the pathology again, because the pathologist has never seen it. But in the meantime, you've got an appointment with you know, gynecological oncology and dermatology and all these doctors. So, okay, I still I still didn't want to believe it was that it's like, how can I have melanoma? There I go. I've never heard of it. They've never heard of it. It's a mistake. So it's now December 18. And I go to the gynecological oncology appointment, and they take all the notes, they want to know the whole story. She examines me, and my husband's in the room with me. And she examines me and she says, Oh, yes, I see it, you have a tumor in your vagina. And obviously, it's melanoma, you know, given the pathology. And I'm lying on the table, you know, and she's looking at me and, and I am saying nothing. And she goes read, did you hear me? And I said, Yeah, like, but I'm so confused. I'm looking at my husband. And in my head, I'm thinking to myself, This is my I'm living my worst nightmare. This is what I feared the most that one day I would get cancer. Are you kidding me? I have cancer. So at this point, she says, the location is really not good. And there is nothing we can do. And I said, No, no, take it out. Take everything out. You know, I don't care. Just take it out. And there's got to be chemo. And they said, No, there isn't. But because for melanoma, there is no chemotherapy. And she says, but I will send you to the melanoma surgeon, specialist and to the melanoma cancer team.

So this is Christmas. Now we're at December 18. So I get through the whole holiday. And I have my pet scan in I don't know it was early January, or between Christmas and New Year, I don't remember they do a PET scan to see exactly what they're dealing with. And, and I see the surgeon and sure enough, yes, there is. It's not anywhere else. But it's there. And the surgeon tells me they will have to do a complete hysterectomy. They're hoping the location of this tomb or that they are not going to have to touch the bowel, because if they do, I would get I would have to wear a colostomy bag. And you know, a whole bunch of other and it's a big surge, I gather this is a really big surgery, they had also to remove part of my vagina and all that stuff. So it's a big surgery. And he says, In the meantime, because of the size of this tumor, and I couldn't tell you how large it was, but maybe because of the size and the position of the tumor. We're going to start you on some treatment and that's great. I was willing to do that and I go off and while we're getting ready for to schedule surgery says In the meantime, do some treatment and hopefully it'll shrink the tumor. So I see the gynecological know the regular melanoma oncologist and they have a plan and it's extensive and they're giving you so much information and one of these is a combination immunotherapy drug called epin Evo so I don't know if you know much about immunotherapy, but immunotherapy unlike chemo that destroys everything and then rebuilds immunotherapy actually revs up your immune system to wake it up to the fact that you've got cancer in your body and to attack it. And so I said fine, and of course they run through the list of side effects, which are many and and one of them I remember very well was type one diabetes, but the chance of that was like, less like 1% chance you would get it so what Rita

Scott Benner 24:29
what's the chance to get vagina cancer?

Rita 24:32
Exactly right. So like oh, you will soon find out that I there is a very small chance of getting it I will get it so anyway, I do this treatment, it was fine. I mean, I do the treatment I handled it well. I'm like I'm like two weeks into it like it's every three weeks I think and I'm two weeks into I'm still working I'll also good and then when morning, I wake up and I go, Oh, I don't feel good. I start coughing and couldn't stop. I'm scheduled actually, for another treatment, I go to the hospital. And I had called them I think, and they said, you know, come in, we'll take a look at you. And we'll see what's going on. And of course, what I'd had developed was pneumonitis, which is sort of difficult to breathe. And I guess it's an inflammation of the lungs, I'm not sure but so I cannot have treatment. So I'm put on steroids for 30 days, they stopped treatment, because they said, We don't have time to wait for your tumor to shrink, we're gonna take care of the pneumonitis. Because the way your lung capacity is right now, you're not going to make it through surgery. So we'll take care of the pneumonitis through steroids. And then we'll go straight into surgery, which is exactly what happened. So I had surgery in March. And he did not have to touch the Bible, he did the whole surgery, were good. But I knew I would have to have radiation just because of, I guess the type of cancer it is. And the way they explained it to me, though he thinks he got it all. There's always can be specks of the cancer, you know, sort of around, and we're going to do a radiation in the area, which they did. And now, I finished that in the end, the end of May. I have my pet scan in July, and they're telling me they have told me that. If all is well then then that's it, we'll just follow up with scans every, I don't know, six months for a while or three months. And so I do a PET scan in July, which is you know, the full body scan and they found cancer in the lymph nodes in the groin and something in my lungs. So okay, I have to start therapy, immunotherapy. Again, this time, they're giving me another drug. Because that combo, my body doesn't tolerate it. And they gave me one of the two drugs that were in that combo. It's called off Devo. And I had that and I started that in August. And that went really well. I'm doing very good in early December. I have my PET scan, it's showing things are sort of shrinking, but still there but doing well. And it's December 21 of 2017. And I'm at the hospital for my infusion. And of course every time you do the infusion, they do labs, and I'm sitting at the chair, they've got the IV going, they're just waiting on the labs before they start and the nurse comes in. And she says hey, are you feeling okay, today? I go Yeah, I feel great. She goes, Oh, because your blood sugar's are at 622. I know what? And she says, I got there certainly wrong. And she goes, Yeah, we're going to repeat the blood glucose and they repeat it and comes back. She goes, No, now you're at 530. Doctor wants to see you right away. There's no infusion today. So I go up to the office. And that's when they told me they said, We think you are you have develop type one diabetes as a result of this. So off you go to, to the emergency room and to be admitted

Scott Benner 28:13
reader before we get to that. Yeah, I'm trying to I want to make sure I understand. In the course of two years, you get diagnosed with a incredibly rare cancer inside of your vagina, they take it out, and you're getting treatments, and then you develop cancers and other places, you get more treatments. And then like two years after the initial diagnosis, you get the type one is that right?

Rita 28:38
Oh, sorry. One year rap was temper of 2017. Yeah, I'm sorry. I might have given the wrong one year after

Scott Benner 28:44
No, it was a lot of information I might not have been keeping. Yeah. So okay. Yeah, that's kind of how I want to go over it. You're in his office, you're looking for a window to jump out of or where's your where's your mindset at the moment when he tells you

Rita 28:55
Yeah, I'm, well, sort. So part of it is, you know, cancer, the cancer is such a big thing. That everything else sort of takes a backseat because I go, it's okay. It's okay. Like what is I have no idea what type one diabetes is. I know people get diabetes. I know. I probably know what type two is because you're overweight and you're not extra. You know, like, just the usual what people think type one I have no idea what is involved. And,

Scott Benner 29:25
and you're you're actually living the phrase, at least it's not cancer, because you know what that like, because that's what everyone says, anytime anyone gets sick with anything. It's not cancer, like least it's not cancer. But then once Yeah, once you have cancer, I guess the phrase is, well, at least it's not cancer, but you have way more context for it. Yeah.

Rita 29:48
So my, my thought in my head is well, at least the cancer is shrinking. I don't care if I've got type one. At least this seems to be working. Like I'm still here. Like I've still I've had another year of life. If I've seen my grandson grow up a little bit, like I'm good, you know, it's okay. And so, so anyway, I could tell that they were. I mean, my doctor was my oncologist was, I'm so sorry, this has happened and I'm going so right. Okay, you know, send me two. She says, you know, will you go ahead because we were waiting to be I was waiting to be transported with the wheelchair to the emergency room, and they weren't coming. And so she says, you know, you got, are you okay to walk? I go. Yeah, like, I'm feeling totally fine. And I will say the only thing I had in retrospect, was probably maybe a week before. I was really thirsty. And I did notice that. And again, I didn't, I didn't think anything of that. And, you know, my blood sugars up until that point, were really good. Like, I've never had an issue. So anyway, my husband and I go walk over to the emergency room, and I go, What do I tell them? She goes, she goes, You tell them that your blood sugars are high. She goes, I think you've got type one. She says, But if she's giving you if she's not understanding what you're saying, have them give me a call. This is the oncologist referring to the emergency room doctor. So I get in there. Yeah. And they do my blood sugar. And of course, I'm high and they're taken during the intake, and the doctor is there and the emergency room nurses there. And I just say to her, I go, she goes, You know what brings you in and I go, I told her the story I got you know what, I think I've developed type one diabetes, and she looks at me like, No, you just don't develop type one diabetes. She goes no, I go look, just call my doctor. And and sure enough, that's exactly what it was. But it is immunotherapy. I mean, this was already four years ago, already, it's come a long way. It was so new that even just your regular doctor, if you're not exposed to this, you're not even going to know what this is like, this doesn't make any sense. So that day, I get admitted to the hospital. I am not in the ICU, I'm in the regular hospital. And you know, they start doing all the tests and and I find out that my biggest fear was do I have to give myself insulin like, you've got to be able to give me a pill. I don't do needles like that. I don't do needles, I don't want to learn how to give myself. Like I'm very grossed out by that. I don't know. It's like, I'm sure there's something I am still, I guess, sort of in denial. And, uh, no. I mean, I was in there for two days, they told me they showed me taught me how to inject insulin. And it wasn't too bad. They brought in on, I guess, she's the educator, um, you know, in the hospital when she's there teaching me the formula, like, I don't even remember it now, because I'm on a pump now. But you know, for this many carbs as much insulin and. And looking back, I was told, I was told a number of things that were not right. Which of course, I knew nothing, such as, when you inject insulin, you need to be eating immediately, like, do not be waiting around like, so no such thing as a Pre-Bolus. And, and anyway, so I do this, and I learned and I'm, I'm doing well, I don't know, I made it through I was doing okay, but my sugars were if I were to look back, I think anything, you know, around 220 I considered a victory like, you know, I had no idea

Scott Benner 33:33
was that my brain? I mean, was that because that you had seen a 600 at the hospital and 200 seems much lower.

Rita 33:39
Yeah. And I think they sent me home with something under 250. So they sent me home. And then I remember, this is how crazy I was. And crazy only in retrospect, like three days after this diagnosis, my husband and I, we do Christmas with the kids. And then my husband and I fly off to Canada where the rest of our family is, I don't even know what I'm doing. I mean, I've got the formula, but at this point, I know my sugars are like, really high and I've, I've put in a call to the uncle, not to the oncologist but at this point, I have an endocrinologist. And I must say She guided me through it but I don't know if it's because I was under enough control right now to sort of get through things and we're gonna deal with the nitty gritty of it. Soon enough, you know, just sort of like letter, familiarize yourself with carbs and insulin. We're

Scott Benner 34:35
such a lovely person. Here's what I imagined. It's Christmas. Two years. We'll get to this lady after I've drank myself silly. That's what

Rita 34:45
exactly. She's fine. She's not at, you know, 400 anymore. She's good. So we'll send her

Scott Benner 34:51
on January 5, shall we? Yeah,

Rita 34:54
yeah. So I go back. So I think my treatment was canceled. As my next scheduled cancer treatment was, was cancelled, because I said, Let your body kind of get used to what's happening right now. And, but we'll start it up again, because damage is done. It's like, you got what we feared. And so we can continue and they did. But yeah, so that's, I was gonna say something else, but I can't remember right now, but that whole that whole time period, but yeah, so that's it. So eventually. So yeah, so what happened is that the so the immunotherapy drugs sort of rev up your immune system and it revved up. It revved it up so much that it didn't recognize that the beta cells were were necessary it considered the beta cells something for and I guess and so it just basically killed them all. And so that's what happened. And

Scott Benner 35:55
we'll never know if you had markers for diabetes. Like if you like, Isn't it crazy to think that you might have lived your whole life with genetic markers for type one, it just wasn't happening. And it maybe never would have happened if somebody wouldn't have supercharged your immune system. Yeah,

Rita 36:12
maybe they were there but my fat in my family on either my parents, either my parents died. Nobody. Nobody has any. You know,

Scott Benner 36:20
there's no autoimmune at all.

Rita 36:22
An autoimmune just No, none. None. And so yeah, so it. Yeah, so it attack the pancreas. And in fact,

Scott Benner 36:31
you didn't have kids, so you can't pass them.

Rita 36:33
So I didn't know exactly. And I know that when they did the C peptide a year late. When did they do the C peptide. Initially, I guess I was at 7.0. So I was in the range. But when they do it a year later in 2019, I'm at less than point one. So I was doing well. Until Until then. And then what happened is I got a whole bunch of auto immune really, diseases Yeah, so I develop. So in that period, I develop vitiligo, so I have the which is like you know where your skin uses pigmentation. So I have that in my hands and arms, my feet and legs, I develop colitis, and which has been a Lago is not a biggie. I mean, it's, I can live with that colitis, I'm on medication. I mean, colitis ends up playing a role later on, but I'm on medication for the colitis. And at some point, at this time, I also lose production of saliva in my mouth, mucus is in my nose tears in my eyes, so sort of no mucus is from neck on up. And that was extremely difficult. That was that was a very difficult side effect. Because without saliva, it's difficult to talk, extremely difficult to eat and swallow food. Of course, you've always got a stuffy nose and then the eyes it hurts to blank because there is no no tears. And then yeah, I was gonna say and then when you cry because I'm so frustrated no tears come out and and that's fine with no tears. That's that's traumatic. I can't even cry. I'm saying to my husband is it's terrible.

Scott Benner 38:35
That an autoimmune disease, the no tears, no mucus.

Rita 38:39
So yeah, so they sent me to so that's another thing. So I go to a lot of different specialists at this point, because so they go to rheumatology. I see rheumatologist and really, he told me he goes, this drug is so new. These drugs are so new. We really don't have a track record with other patients. But he looked it up and he sort of it is not sjogrens Because he does you don't have any of the markers I guess or whatever there. It's not sjogrens but it is like a sjogrens. So I'm actually on a drug right now. And I'm not sure if it's the drug that we established all my mucus is or if it's just time, you know, just like because once eventually I stopped this up Devo. It was just it was too much for my body. We had to stop. And it wasn't because they know we stopped the infusions. So yeah, yeah, I was just so I get all that

Scott Benner 39:36
as you said that I thought, well, maybe can you induce sjogrens disease and then that's not but that's not that.

Rita 39:43
No, it's not. No, and I've asked again, you know, I asked the rheumatologist recently. I just want to be clear. This is not short because it is not short because we don't I don't even know that they have a name for this yet that they just know this is happening.

Scott Benner 39:56
I have a number of questions. Can we can we kind of like go backwards for a second here. and picked it up. Thanks. So yeah, all the way back to the beginning just because if I don't ask, I'm gonna wonder for the rest of my life. How do they how do they read? I'm 51. And I feel like I know what the vagina is, you know what I mean? Like, anatomically but like, did they take parts away? Do you still? Yeah. Do you still urinate that way? Yes, yeah. Can you have sex? No, no, okay. Okay, boom, boom, boom. Yeah. All right. How is? What's that? Like? I? Because I think people would, I think it's possible that younger people here 63. And they're like, Oh, you don't have sex meter? 63. But sure you do. And so like, how do you adjust with that? Or is sex the last thing on your mind while you're going through all these things? It

Rita 40:53
is the last thing on your mind. Okay. It really is. Because, you know, it's, I guess when you're faced with living or dying, it is really, for me, at least for me. It is like the last thing on my mind. And so I've had up until now, like, Oh, wonderful, like a wonderful, you know, it is what it is. And you just sort of make it work. And but it's for me, it's okay. Because I still there's so many moment life is made up of so many, so many moments that all those moments make it worth it. You know, ya know, and so a part isn't there. But that's, it's okay. But yeah, it is hard to it is hard to wrap your brain around it. And it's not a decision that everybody would make, you know, I understand that.

Scott Benner 41:55
No, no, I would trust me, you could, if I thought it was gonna save my life, I think you could pretty much take anything from me. So that that makes sense to me. Is it visible? Like what? No, like, from the outside? You can't tell what happened? Never. Okay. Oh,

Rita 42:09
no. And if you were to meet me in the street, and there are people that I see, nobody would ever know. So my cancer is stage four. I mean, it is. So this, this cancer is not even staged. It's not staged, because typically, by the time you find it, the doctors find it. It's really a stage four, so they don't even bother, like the doctors had told me a while back, like, I was never under the illusion that, hey, we're gonna do all this, and it'll go away, and it'll never come back. That was never the way it was presented. To me, it was always this is we're gonna consider this to be a chronic disease. And there'll be periods of time where you're, you're fine, you're clear, and all we're doing our skins. And then there's periods of time where we will find something and you're, you're back in treatment. And it's like my first, well, not my first my surgeon had told me early on when we, before he did the surgery, he said at that time, so this is 20. I spoke to him, I say 2017 As I'm when I'm having the surgery, and he said, there's really like Not a lot, there's a lot of a lot of research in the pipeline for this cancer, because that's not where the funding is. That's not where a lot of the focus is going on. He goes, but there's a lot coming up in the next five years. And it's it's he didn't say it's unfortunate. You got it now, but sort of like but here we are now. And so we got to work with what we have. So my, my philosophy right now, if you will, or my way of getting through it is that science has to stay one step ahead of me, as long as my cancer doesn't progress so far, that they have nothing left to give me. I'm good. Like, I'm fine. I'm willing to try. And in fact, you'll hear that I've, you know, I'm on other stuff right now. So, so that's, you know, that's how I look at it. And and we know you're not to get to

Scott Benner 44:09
before, you've been living like that for about five years now. Yes, yeah. Yeah. So you, you have cancer. It is yeah. And they are beating it back with the the therapies, with with the

Rita 44:23
therapies, some brand new ones, and some that I have yet to try that are just in the pipeline right now that are coming. Some that are not there yet, but some that I know some promising ones that are waiting FDA approval, which should be coming within the next, I think less than a year so I'm just trying to keep I give it all I've got to sort of make that science you know, stay ahead of me and that's how I look at it. But yeah, so when you look at me, you would never know I'm sick. Now I have lost initially from the start of this I've probably lost about not probably I have lost roughly 40 pounds, a lot of that loss came after the diabetes diagnosis. So I'm not sure if, if it's that I am not sure, like what diabetes forced me to do is really, um, cancer was really changed. Both diabetes changed the way I eat in terms of not so much what I eat, because I was pretty good eater how much but how much I eat. You know, diabetes has forced me to be a healthier person, believe it or not,

Scott Benner 45:35
I know that but like a portion you mean, like you just smaller portions?

Rita 45:40
Yeah, it's not, you know, at the beginning, you should have seen me and even now, I just don't do it. My husband does Oh, come on now. I mean, I weigh everything, I weigh my food. I'm a little OCD that way. So I weigh I carb count, I, you know, I do all this, all this stuff. And that's, I have to, it's the one way I can control you know, and anyway, as much as you can, I can control the diabetes, or I think I'm doing a good job now.

Scott Benner 46:10
I'm certainly or what, what, um, do you see a therapist, once the cancer comes?

Rita 46:18
So I, so when the cancer came, there was a support group at the hospital for melanoma patients. And I did that. And then COVID stopped that. So I do. So in the middle of all of this, I find. So between I was I was home for a year following that surgery because I had surgery and then treatment. And you know, it's just, it takes a lot out of you. And I was home. And I decided I was going to do I wanted to do some yoga. So I found a cancer center that had a lot of sort of whole holistic approach in terms of yoga and exercise. And there's therapy there and I do an all through zoom. Now the Yoga I don't do as much because I do work now, but I do I do. Zoom, cancer support. I really you really need it. i I'll speak for myself, I really need it. I am very, I'm very open about what's happened to me. If somebody were to ask, I would, I would certainly tell the story. I think there's a story to tell. But, uh, but I think therapy has helped me help me with that. How about and like I said, if if you were to look at me, you'd never know I was sick.

Scott Benner 47:31
I know. I know who you are. I've seen pictures of you. Yeah. You smoke the weed now. Does that help with? No,

Rita 47:40
not necessary? Not necessary? I'm not I haven't been there. No, no. And you know, through all the treatments that I've had, and it's funny how the mind or the body kind of like, forgets like when I think back. I was like, Yeah, I was I was pretty sick. You know, I was sick. And I look at pictures of myself. And I go, Oh, yeah, I can tell like at the time. I couldn't tell I was sick. But now looking back and seeing the way I am now I go. Yeah, I could tell I was sick. And I was one. At one point. I'm in the hospital for some probably DKA. But I'm in the hospital. And I look in the mirror and I go oh, my goodness, look at the way I look. So I've had those moments. But yeah, what was your question? I didn't know if. Yeah, so not necessarily. Yeah. Like, no, no,

Scott Benner 48:29
no, or anything like that?

Rita 48:30
No. Okay. No, no, no.

Scott Benner 48:32
Wow. Can I ask just getting away from all this for half a second? looking more at the kind of, I don't know, the psychological side of it, I guess. Have has your has your outlook on what life is changed? And, and what your date, what your days mean? And what your time means, like, that kind of thing?

Rita 48:57
Definitely. So it's changed first of all. So I've started meditating. I do that, but I'm actually more I'm really grateful. It's like, I am so grateful for my husband because like, without this, like, I know, I'm lucky. I really despite it all, I am lucky, he has been with me for the whole thing because there are times when you're dealing with all of this, it's just a lot for the brain to absorb. And even now, I mean, I I might look like or I might feel like I'm good. But you know, when you go to those appointments, it's always like anxiety provoking when I have a scan, it's anxiety, provoking all those things. And so I'm grateful for that. I am so grateful for like Mike to see my kids like five years out and okay, this is what they're doing. And now I have a brand new grandson so I get to see him. And I look at the day Yeah, and I just say oh gosh, it's such a beautiful day. I do so much. I do a lot of walking. And I started that early. I started that actually four But before cancer and diabetes, but I do a lot of it. Now I have some extremely great friends that are there for me. And yeah, so I'm so grateful to everything you know. So about yes, definitely

Scott Benner 50:14
things that just eat time like I make a very simple like example, like do you still watch television? Or did you prior? Or is that one of those things where you think this doesn't matter anymore? Like I'm not trying to kill time anymore?

Rita 50:29
No, I'm not trying to kill time. I'm not a big TV watcher. So I don't watch a lot. But I do read a lot of books. I love that. I. So prior to the cancer diagnosis, my husband and I did a lot of traveling. And we've done a few trips where we do walking vacation. So we walked through Spain, we walked through Portugal, we've done a lot of that. And of course, cancer threw a monkey wrench in that because for a long time, I was not this is even before COVID I was not allowed to travel. The doctors didn't want me too far from a good hospital, a hospital that would know what I've got, you know, yeah. And, and then of course, COVID hits, but just and then, and then diabetes and diabetes was I've had some scary moments with it. And it was like, it's scary, but I think it was in October of 2019. So before before COVID I did We did do a trip out to the west to the Grand Canyon and the Four Corners area and I hiked and so that was scary because Okay, I'm gonna be somewhere in the middle of nowhere I got my pump. At this point, I got my pump and my CGM. But it's like, you know, in the back of my mind, oh, man, what am I gonna do? Like, Okay, I gotta bring all the snacks, I gotta bring all the glucose tabs and all those are really, like, heavy on my mind, you know? And even now, like, this evening, we're actually traveling, and we're going to Vermont, and I'm in I'm in Georgia right now. But we're going to Vermont and Okay, I gotta bring all my supplies. And that's all. Don't forget anything. You know, I mean, getting through security. It's like, it all works out. But that doesn't mean I don't stress about it. Just that about.

Scott Benner 52:14
Has there ever been any conversation with you or your doctors about some of the things earlier in your life? And this like, for instance, not being able to have kids? Is that? Is there a possibility that there was something wrong in there the whole time? And you didn't know? Or is the nose? Yeah, there's no way to know about stuff like that, right?

Rita 52:33
There is no way to know. I mean, I know they did some some testing, like genetic testing, but even what I have, and what I understand, and I'm not gonna pretend I even understand what the doctor said. But mine doesn't really have anything, they have no idea. So when I asked the surgeon, he says, who knows, like maybe the invite, like we don't even know enough other

Scott Benner 52:52
people that have it that you could get no, like, no, like some data from people like oh, there's, you know, a certain percentage of them that have had similar other issues in the air. There's not even there's not even

Rita 53:06
now there is a Facebook group that I belong to that is dedicated to mucosal melanoma patients. And so it's the variety of us it's vaginal rectal sinus, but there's not a lot of us. And, and it's, I don't know that anybody has found out the reason why this has happened. I know there is a registry. I've learned through the group, there is a registry forming right now on rare cancers, with the hope that we will have some of the answers. And just getting back to my diabetes. You know, I follow a lot of, I'm always like, sort of looking. That's how I found actually, my husband found your podcast that kind of helped me along. But I belong to I guess it's type one. I don't know type one something. And one day they send sort of like a little newsletter, and in it was they were starting to do research and UCSF regarding they've discovered that people on immunotherapy, very few get diabetes. And I just reached out to that I had a name of a person who they interviewed and I reached out to her. And they they're just starting and this was probably maybe three, four years ago that I reached out and they sent me like a kit like labs to get done. And I just sent my labs off to them. I'll never know what they find. I don't think they're using it for research purposes. But my doctor, my oncologist has said, what they're trying to do is, you know, the patients that do develop type one is trying to find out, is there something is there a commonality in it, or is there something that we could give these patients is there a drug out there? Or do we need to develop a drug that if we give it to them prior to immunotherapy, it will save the beta cells? I think this is what they're working on. But I don't you know, I Google it every once in a while to see if there's any progress made. But I mean in my case is it's too late, I think Um, but you know, that's okay. Yeah. Well,

Scott Benner 55:02
maybe it helps somebody in the future because the therapy absolutely is the therapy is growing. And it's and it's morphing and getting better. And they're trying. Yeah, yeah. Because yeah, look what it's doing for you. It's really back. It's put the cancer in like stasis, right? So you're not getting worse and you're not dying. It's just, it's amazing. Honestly,

Rita 55:23
it truly isn't.

Scott Benner 55:25
It makes me embarrassed for the notes I've written in front of myself, because at one point, I was jotting things down Georgia, not able to have children and I my shorthand for vagina. I made an oval and then I drew a line from 12 to six o'clock. Yeah. No, I drew it. I was like, that doesn't look like a giant at all. But I knew at least what I was doing when I was going. It's just such a crazy. It's a crazy stuff. It's crazy. Yeah. Yeah, it doesn't it doesn't make any sense. So let me ask you, when you got the type one diagnosis, do they give you like, you get to the endocrinologist, the holidays over etc. You're back from Canada from if I'm listening correctly. Yep. You get a pump. You get pen to get needles. Do you get a good? No,

Rita 56:14
I get the needle, I get a needle and and I don't know if this is typical of other type ones. I have no idea but my blood sugar. Oh my goodness. So unstable. It was like, you know, I think I was picking my finger like about 10 times a day. And even that I was I don't know if it was me just being worried. But I was forever. It was and my blood sugar's were like kind of all over the place. So then we are in. I don't know it was an April. Okay, now hold on, what year Am I met? I think it's 29 2018 or 2019. But I'll find out in a second. But I say to the doctor, hey, I at least want a CGM. I've gotten used to given myself needles, can I just get that thing in my arm, which tells me where I'm at. And she goes, Well, if you're gonna have that, I want you to have a pump. So they they give me the pump and I get a pump. I don't, I don't even know There's choices out there. So I get it. I get the Medtronic pump with the CGM. And I said, Great. So they started me on the pump. And again, thinking back and telling you the story. Another crazy thing that we did is I get the pump on a Thursday, and I made the pump trainer. And she sets me up and shows me how to do it. And we're all good. And the next day, we're heading to a wedding, three and a half hours away. And I thought nothing of just sleeping because like, Okay, I'll have my pump, it'll be great. And I'll go. So we're driving and my sugars are going up and up and up. And I'm just pumping more insulin and I really don't understand what I'm doing. Like I have an idea. But I go this is not working and I'm not I'm eating and my sugars are like in the three hundreds and I go Why isn't this supposed to be better? And I do call the endocrinologist on call at the hospital. I'm like three and a half hours away. Watch your sugars, you know, increase your Basal like, bah, bah, bah, you know, whatever, whatever. She told me, I'm doing all this well, by the Saturday morning. I was so sick. I mean, literally, I'm on the floor. And I said I have to get to a hospital like I don't feel right. This isn't good. And I am not going I don't know if I mentioned when we were in Knoxville and nothing against Knoxville, but I want to go to my own hospital, because I'm still thinking of the cancer and I just want to be where people know my case. And I don't want to have to explain all this because this is you know, rare and so we make the three and a half hour three hour trip to back to I'm in Atlanta

Scott Benner 59:02
back to Atlanta and DK

Rita 59:05
and DKA I don't know it so I get to the hospital and they're waiting for me. You know, we had made the call, go straight, do not go home do not do anything straight to the hospital. They take my sugars. I'm in DKA and I ended up in the ICU but you know in the emergency room they take off my infusion set and my cannula so then cannula I wasn't getting any of the other the insulin I was pumping in that easy.

Scott Benner 59:31
Yeah. Yeah, you too. You're too early into it.

Rita 59:37
I am Yes. I don't know. I don't know what, you know, what, what, but what I was doing really, I really shouldn't have gotten on the trip, right. At least I should not have started the pump when I wasn't going to be home. And so I'm in DKA. And at that point, the endocrinologist says Oh, no, I don't have a I don't think I had the CGM then and he says no, we're, the CGM is Like I don't care about because they were saying, you know, do six weeks with the pump to get you used to it. And then we'll bring a bill introduced the CGM, and they go nevermind all that CGM for you right now. And I did that. And and that certainly helped me a lot. I did have another episode of DKA. In. So this was I looked at my notes, this one has happened in May of 2018. So six months after diagnosis, I got the pump. And then in November of 2019, I did end up with DKA. Again, I really don't know how that happened. Because I was really, my sugars were not terribly high, and I'm gonna call it in the baby. I mean, high in the 250s, but not enough for me to, and then all of a sudden, I just didn't feel good. And once again, it was DKA. And that was the last the last time I was in the hospital for diabetes.

Scott Benner 1:00:54
Do you ever firmer grasp you do now like your husband found the podcast? Yes.

Rita 1:00:58
That's so this is. So here's a funny story. And so it's Yeah, so he's a big podcaster. And, you know, I don't even know what I'm doing. I go to a nutritionist who was no help at all. Because when I tell my endocrinologist, what she's asked me to do the nutritionist in terms of what I eat and donate, she goes, Oh, no, she goes, she's treating you like a type two. Forget that. That's not, that's not what you're supposed to be doing. She played with the settings a little bit. But anyway, he finds your podcast. And I listened to it. And then it is. I see that you guys, you and the whole bunch of diabetic specialists, if you will, are coming to Atlanta at a JDRF event. And that's February of 2020. Just before COVID

Scott Benner 1:01:46
Were you there.

Rita 1:01:47
I was there. But this is what happened. My husband goes and see you because again, you never leaves. You know, he's so in this with me. He listens to you. And I go listen to Jenny. Yeah, Jenny.

Scott Benner 1:02:00
Same time with the first the first hour. Yeah,

Rita 1:02:04
yes, you're right. Yeah, unfortunately, you're talking at the same time. And we get in there. And that was actually very enlightening, because we get in there. And it's full of people. And all these young I mean, these young kids. And it was funny because we go to lunch and my husband goes to see these people, they're eating everything nobody's waiting. You need you need to be like that read a lot is like waiting and watching it. And so yeah, I we learned a lot on that trip. And in fact, if I can say I had Yeah, I did hire Jenny. And Jenny has helped me tremendously through managing all of this. I mean, she's sort of, you know, I go to the doctor now. And they don't even Oh, look at these numbers that you're doing great. Keep it up. They don't just they don't adjust anything, Jenny.

Scott Benner 1:02:57
And I don't talk about it, of course, because she's a professional health care provider. But I'm aware that a lot of people that listen to the podcast, see Jen Yeah. And so it's it's wonderful that you? Did you see Yeah. So did you see Jenny and I speak together in the second hour? No, did you go to something

Rita 1:03:17
was I might I might have gone to something else.

Scott Benner 1:03:21
Read it was your mistake. We were delightful.

Rita 1:03:23
That was the one thing I've done wrong. Yeah, really,

Scott Benner 1:03:27
if you if you've made any mistake, really, it was not seeing to me and I speak together.

Rita 1:03:32
But that that event was so helpful, like in so many ways, like really helpful to hear, you know, the speaker speak helpful to see the people helpful to see parents and, you know, vendors, like just everybody. I thought that was, that was a pivotal point for me. I really believe that.

Scott Benner 1:03:50
Yeah, the person who ran that event did a wonderful job. And I don't know if they're, I mean, it's the JDRF I don't even know if they're doing this stuff in person anymore at some of these places, to be honest. But God, I think it was Kim, right? And

Rita 1:04:07
could have been, I'm gonna look. I don't think they've had one in Atlanta because I would have no,

Scott Benner 1:04:13
I would have seen it. I'm not going to use her last name. Because it's, I don't know, it's not my business to say but Kim was terrific. And she set up an amazing event. And then we all bug the hell out of there because the world was coming to an end.

Rita 1:04:26
Yes, exactly. After like two weeks later, it all sort of fell apart.

Scott Benner 1:04:29
Flight I took home from Atlanta was weird, like walking dead empty. And like so much so that it was clear things were happening. You know what I mean? I was like, Oh, this is it. I guess people are serious about this COVID thing. And I had three seats to myself my I like I flew home like laying across three seats, because there was just no one on the plane. Nobody there and but I never I didn't meet you at that event or your husband.

Rita 1:04:58
You did not meet me. No, you didn't make a and I'm not sure that he went up to you like, of course at this point, we're just I finally started listening to your podcast and mid maybe fall of 2019. So yeah, so no, I didn't I didn't meet you there. But anyway,

Scott Benner 1:05:21
I want the real story. You didn't you're like the guys he's okay but this Johnny's

Rita 1:05:25
he's okay you take the guy I'm gonna go to you

Scott Benner 1:05:30
because you tried to nutritious and didn't get good help but Jenny's Yeah, different.

Rita 1:05:34
Yeah, no, I mean, it's totally different. So yeah.

Scott Benner 1:05:39
i It's i I'm sorry, they don't do those things anymore. But the JDRF seems to? I don't know. I don't know, they changed. They changed direction during COVID. It seems like to me about the in person stuff, but for at the very least, so. Okay, so you're so now you're using a pump? What do you that is an algorithm to are using control like you are on the pod five or something like that? Are you still managed? Yeah,

Rita 1:06:04
no. So I saw I know, I'm Medtronic I actually don't do I don't you know, they have the auto mode where it sort of does it for you. I don't do that. I do manual mode. And I prefer that I like to have. I like to control it myself and sort of figure out

Scott Benner 1:06:22
I'm sorry, using CGM from Medtronic. I am your

Rita 1:06:27
I'm on. And I'm on the newest pump. The seven. I just got the 770. And I'm doing well. I find their CGM quite accurate, actually, compared to the 670. And yeah, and I'm doing well. And I've, you know, I've got my rates sort of dialed in, I think. So I'm probably I'm up probably about 93% and range. And my, my agency back in April was 6.2. So I could bring it a little, a little lower. But where I am right now, I'm happy. I mean, compared to where I started. Yeah, I'm not. I'm never rarely Am I low? Like I think I'm less than 1%. Low. And, yeah, so

Scott Benner 1:07:17
I think you're about to be famous at Medtronic, because right now I imagined someone's running around the office going someone finally said something positive about our CGM.

Rita 1:07:27
Yeah, I mean, and, you know, I just got the new one and part of it is like, Okay, I had an option, I suppose. But, you know, I don't feel like starting over again and dealing with insurance and get it I was like, oh, nevermind, it's just too hard. And it hasn't been, it's been fine for me. So I just said, I'm just gonna keep keep doing what I'm doing.

Scott Benner 1:07:50
That's exactly the attitude that helps me stay married. Because Kelly's probably just like

so much trouble to get the sofa out of here and

Rita 1:08:04
all of that. It's like, who needs that?

Scott Benner 1:08:08
Wow, that's amazing. We're up on an hour, but I'm not rushing you away. Is there anything else you want to talk about?

Rita 1:08:15
Ah, no, I guess the only other thing I'd like to talk about that people don't maybe doctors don't understand is how difficult it is for type one diabetic to get a PET scan, I find it probably one of the most stressful things that that happens and I don't think enough doctors understand what is involved. So when I have a PET scan the night before, okay, I got I watch what I mean I don't watch what I eat. But I tend to eat a little you know, a careful because I want my blood sugar to stay at range because for the PET scan, I am not allowed to Bolus or eat anything. I think it's six hours ahead of the of the scan. So I do do the scan first thing in the morning I usually you know we schedule it then. But and it isn't so much that I go high because I'm not because with the high I can I can play with the Basal but it's when I go low and yes, I can play with the Basal when I go out but I cannot take a glucose tab I cannot eat anything I can't so I have to keep it within a certain range without really the aid of any insulin. I do have Basal going into the last till an hour before. But I find that is extremely stressful. I've gotten better at it because I've now I've had many PET scans but I think it's something that is not understood. And in fact, when I first I didn't even have the pump, but I was having a PET scan that day and it was at the wrong time of day and you know I think they scheduled it for the afternoon which is terrible and my sugar's are climbing and I call the endos office See, what am I supposed to do? And they said, Oh, just give yourself go ahead Bolus. I didn't know I wasn't supposed to. So I get to the PET scan. And the tech technologist says to me, you didn't give yourself any insulin, did you? And I go, Yeah, actually, I just did to bring down my sugars. They go, Oh, you're not allowed no PET scan. I go what? And I think the trauma of that visit, I mean, I started to cry, they, they called the radiation oncologist in to talk to me because I said, it doesn't matter. I'll just wait here to the Bolus sleeves, and then you're going to do the PET scan. And they go, No, we can. So they brought in the radiation oncologist who finally explained to me that I was going to be scheduled the next morning, they couldn't do it, because they'd get a false reading on the test. But I thought, like, as a patient who I'm about to find out, this test is going to tell me if my cancer if my my treatment is working, or not working if my cancer has spread or not. And for you know, doctors to not know that's I thought that was so basic. You should know that I would think

Scott Benner 1:11:10
Yeah, so you're saying that they just tell you Look, come in tomorrow, this, this happens to a lot of people like there are a lot of tests, like there's even fasting blood work, where they say to you like you can eat after midnight. And then that's a lot of pressure. What if I get low and I need to eat or what if you know, but you can't even Bolus like so you can get a Basal insulin, but you can't put a Bolus. And that doesn't make sense to me. So I'm trying to figure out why that is. But I guess

Rita 1:11:34
what I'm thinking is the Basal sort of mimics your pancreas right, sort of slow and steady. And that's okay till about an hour before and then they have me turn off my pump. And I you know, I remove everything from me. But yeah, and so I think it's Yes, exactly. It is like extremely stressful.

Scott Benner 1:11:53
And in the way they say to you like it's nothing like just don't eat or drink until you

Rita 1:11:57
Yeah, it's like, it's no problem. And you know, and the other thing that that really gets me is, you know, I have all of my you know, I got the pump and I got the CGM. And it's always a production, because I can't go in with them. Like, I can't go in with this equipment. It says so in the literature. And I'm guessing it's the same thing for all the other companies, you can't take these devices into MRIs and PET scans and stuff. And inevitably, every single time Oh, yeah, it'll be fine. And I go know the literature. And I'm a rule follower. And the literature says you can't take it in. And if it says you can't take it, and I'm not going to take it in, and I can't put it anywhere. So, you know, I give it to my husband, who then leaves the area and, and we're all good. And it's only when I say well, okay, I will bring it in. But if it breaks, you guys are paid for it. And then they go home. No, no, you please do, which. It's like,

Scott Benner 1:12:52
we just had this for Arden, right? Where she did have a fasting test in the morning. And we're in the office the day before. And the woman's like, you know, the nurse, she says, you know, no eating or drinking after midnight. And I said, Well, can you tell me? What if her blood sugar starts to fall? You know, are we able to stop that? Or do we have to call the test off? And she goes, No, you can give her insulin. And I went, Yeah, that's not how that works. So I'm like I said, I said, I think I can do a pretty good job of keeping her blood sugar stable. I said, But if she gets too low, she might have to drink some juice. Would that be okay? Well, yeah, you're not supposed to. It's like so if we do, do we call and cancel? And she just right doesn't have an answer. I'll go to the doctor, she comes back out comes back in and then you get a blanket like don't eat or drink. And if it happens, you know, you can cancel. But I don't even think they know if that's like Artemus just having a again, an endoscopy. Like they were just gonna throw like, what a little bit of? I don't know, you don't I mean, like, Could she have sucked on a lollipop like and nobody. But you're talking to somebody who told you to take insulin if your blood sugar gets low. So you're like, Well, are they really going to have an answer for me? No, it just seems like the answer is no. And, and but it said to you so blase. Like, oh, just don't eat or drink after midnight. And immediately you're like, Well, I don't know if I can do that or not. And then you have other stuff on top of it like that. The anxiety of like, nobody gives a crap if they don't get a blood test tomorrow, but you're trying to find out if you're, you know, right, yeah, your life. And,

Rita 1:14:30
and I think the other thing that they're, you know, because they'll ask, and do you have diet? They don't say type one or two. Do you have diabetes? Oh, yeah, they don't do this. Don't take your pills don't do. No, but I'm not on that. I'm on insulin, do I take insulin? And they sort of like, yeah, you know, like, not really. So I don't even think, you know, it's just like, you're just reading a script and it's just diabetes and to them it doesn't really matter which one it is though. Type two can go without eating for for six hours. hours and not worry about blood sugars, I guess. And of course, you know, for for type ones it's the battle is the challenge is a little, a little tougher. So anyway, so that's the one thing. I'd love to like, Oh, I wish and I'm not even sure you know where you begin? I mean is it? Is it the, you know, like that there's so disconnected, right, the radiology department with maybe endocrinology, like, you know, really you sort of got to know like, if you're sending a patient or if a patient calls, you said, Hey, I'm gonna have a scan, can I not? You know, can I do this or not do that, that they would sort of have a real answer, not sort of like somebody that really doesn't know. And really, it's no difference to her if I get a scan or not. If it's canceled or not, you know, does she care now becomes my problem. So that's, that's such that's the biggest challenge. That's a very big challenge.

Scott Benner 1:15:53
You know, I saw my mom is now with my brother, right? And my, my brother is handling a lot of my mom's medical stuff for the first time, and I think he's finding it overwhelming. And I said, Can I give you a piece of advice about talking to doctors offices? And he's like, sure, I said, you have to find a very polite way to do this. And he goes, Okay, I said, but you're telling them what to do. You're not asking. And I said, there's a way they do things. And that might work for most people. And I said, But, but if you're not getting the answers to the questions you need, or if they're not doing something that they need to do, there's a way to say what you need without being demanding. And you almost are, I really do feel badly saying this out loud, but you're kind of directing them without letting them know you're directing them. Right. And I and it's important, because they can't know all of your details. And, and there's no way for them to know. And oftentimes you're talking to people who have answered ads for jobs, who are schedulers, or answering phone calls, or they sometimes they're not even nurses, and you know, they don't really know. And you're asking them these big questions, because they're your point of contact, but they don't have an answer. And then, you know, sometimes they just say the first thing that comes to mind or what they hear other people saying or what worked for somebody else, and you can't get frustrated with them, you sort of have to say, this is what we need. I need you to call this person, I need you to fax this document. You can't just say, I want you to set this up for me, because they might not know what that means to you. Right. Yeah. And he's having a better time. But now that he's been more, I guess, proactive.

Rita 1:17:40
Yeah, and yeah, and the same thing I find when I was in the hospital, you know, and I'm with my CGM and popped out. So I think. I think in some of those visits, the pump came off obviously, because of my bent cannula. And so they had to bring my sugar's back down and did it through an IV and all that, but you know, I really tried to keep to get back on everything like really quickly, you know, and I try to be like, inevitably when a few times I went in there take they're taking my I have no CGM on my arm and they're taking my blood sugars, and it is what it is, you know, whatever, they take it, and I go, okay, and you're coming back in like, couple hours to do it again, right? Oh, no, you're scheduled again. To do your to do your your, you know, we're going to check your blood, like at six in the morning, let's say and I go no, no, I can't go for six hours without, you know, without a checking. So I've learned that. You know, I've been in the hospital a few times. Now that you know, the format before my husband leaves the room. I said, Bring me my CGM. Bring me my, not my CGM, but my glucose monitor right in front of me because during the night, I'm going to check my own sugar. Right? And sure enough, sure enough, one night, I go, you know, I opened I was sleeping I opened my eyes ago. I just don't feel right. And I checked my sugars in there at 40. So I rang the bell and they all come running and I said to them, I told you guys don't let me go for six hours. You know, so. So in all this to say you sort of have to be your own advocate. And I guess that is sort of what you're saying. You don't have to be mean about it, but it's just sort of yeah, like I know what I need to talk about here. It is

Scott Benner 1:19:21
the number of people who will tell me privately when they're done recording that when they're in the hospital, they have family members sneaking their insulin and stuff like that and they take care of themselves and won't even tell the hospital because the hospital wants to run you like a type two on their protocol. Yeah, you know, I'll test you again in six hours, which is insane. And by the way to healing and overall health is optimized with in range blood sugars. You can't exactly can't heal with a 300 blood sugar. It doesn't work that way. So

Rita 1:19:55
no. I was fortunate enough that during one of my hospital visits, they endocrinology sonkar was actually my endocrinologist. So he knew he saw my numbers and they can look at the chart now and he knows. And he said to them, have her put everything back on. She's going to tell you how many carbs she eats, don't worry about the insulin, she's taken care of it all herself. Yeah. And that was so much better and even now, I've had a few surgeries since you know. You know, subsequently after your story, I told you I've had a number of surgeries and even then into surgery now I most anesthesiologist say just leave everything on and we'll and I just reinforced that you better be checking my blood sugar's which I know they do, but they just sort of want to see how it looks no leave everything on because I think for them it's actually maybe easier I don't know but they're fine. They're fine. It

Scott Benner 1:20:44
would be a damn shame that if vagina cancer and melanoma is different places and and lymph nodes and everything that that doesn't kill you, but you're gonna get taken down by by a nurse. When she goes, that's not gonna happen. That's not the way I'm gonna go. Yeah, cuz I imagined your last conscious thought would be son of a bitch.

Rita 1:21:12
Yeah, like in my head, like you're saying Be nice. And I am nice. But in my head, I always say you don't know what you're talking, I could I can do this. It's like, you know, I know what, just leave it all in place. And it's good. And just go look at my you know, go look at my charts. And you'll see where my blood sugars are at. And but yeah,

Scott Benner 1:21:29
I spoke to a nurse recently who had such a good, I thought way about this. She said, with people with diabetes, we see people who are completely just miss managed, they don't know what they're doing. And then it's hard to believe anybody knows what they're doing. But the way we handle it is we start off by saying, Alright, it's on you. But if you drop the ball, then we're going to take over. And I think that's a I think that's a reasonable way to do it.

Rita 1:21:58
Yeah, I think it is. Yeah, I think that makes sense. Yeah. And they don't know us, right? I mean, they see so many patients and you know, I know myself but they don't know me and that's understandable. And so but I like that approach of let's look at you can deal with it. Let's let's watch what you do for the next little bit but if it doesn't work, you know, we're taken over and and that's fair, because not everybody manages their diabetes. Well, I guess you know, so we're

Scott Benner 1:22:27
safely for for the situation. Yeah, what were you this was terrific. Please thank your husband for finding the podcast for me. And I appreciate that you came on and share this story. It's at absolutely insane. It really is. Thank you so much for doing this.

Rita 1:22:43
Thanks for having me. scars.

Scott Benner 1:22:43
No, it's a pleasure. It's fun.

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 forward slash juicebox. You spell that G VOKEGLUC AG o n.com. Forward slash juicebox. I'd also like to thank reader for sharing her story. And of course, the Contour Next One blood glucose meter for sponsoring this episode contour next one.com forward slash juice box get a great meter, get the Contour Next One.

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