النص الكامل لحلقة Surviving Peritoneal Mesothelioma

other, which over time, you know, apparently it just spreads like, you know, it's my exposure was when I was a kid, you know, to asbestos. 00:05:08.800 --> 00:05:13.360 So with that, he was like, I I don't know what to tell you. 00:05:13.519 --> 00:05:15.040 I've never had a case before. 00:05:15.199 --> 00:05:16.800 I'll send you to oncology. 00:05:17.120 --> 00:05:21.519 They sent me to oncology at l at my hospital, and the doctor was there. 00:05:21.600 --> 00:05:22.959 She never had a case. 00:05:23.199 --> 00:05:24.720 So she says, Well, I don't know. 00:05:24.879 --> 00:05:27.519 We can do a tumor conference and discuss this. 00:05:27.759 --> 00:05:35.600 And I was like, uh, so it was like kind of now on my shoulders to figure out where I'm going, what I'm doing. 00:05:35.920 --> 00:05:37.680 Um, I did research. 00:05:37.839 --> 00:05:42.240 I found out that there were 122 cases in New York. 00:05:42.800 --> 00:05:44.000 So I called New York. 00:05:44.160 --> 00:05:51.439 I called New York Presbyterian Hospital and um made an appointment with an oncologist and I started my journey there. 00:05:52.240 --> 00:05:52.480 Wow. 00:05:53.680 --> 00:05:55.920 You were you were treated at Dana Farber, though, right? 00:05:56.480 --> 00:06:01.360 No, no, Dana Farber um had lost their protocol for intraperitoneal chemotherapy. 00:06:01.600 --> 00:06:02.000 That's true. 00:06:02.319 --> 00:06:11.680 So, I mean, here's Dana, the one of the world-famous cancer institutions, they said there's nothing they could do for me because they couldn't give me the chemo. 00:06:12.319 --> 00:06:18.160 They could do the surgery, but then I was still gonna have to find a place to have uh my chemotherapy. 00:06:18.399 --> 00:06:21.199 So I ended up going to New York. 00:06:21.360 --> 00:06:26.399 It was a three and a half hour ride and having radical surgery. 00:06:26.879 --> 00:06:32.160 Um the surgeon, I will say one thing for these docks in New York. 00:06:32.319 --> 00:06:42.639 I mean, they may be very good in their specialty, but they do lack that communication skills or the um, they just looked at me and they go, You're a very sick girl. 00:06:42.879 --> 00:06:46.240 And I was like, you know, like you here I am. 00:06:46.399 --> 00:06:49.600 I just drove three and a half hours to get you're a very sick girl. 00:06:49.759 --> 00:06:52.800 And he goes, You're a nurse, you should know better. 00:06:52.959 --> 00:06:57.279 It's metastasized from both from one ovary to another. 00:06:57.519 --> 00:06:59.120 You know what that means, don't you? 00:06:59.279 --> 00:07:03.600 And I'm like, looking at him like, oh my God, where's my support here? 00:07:03.759 --> 00:07:06.240 You know, like there isn't any, there's none. 00:07:06.879 --> 00:07:15.199 Um, and he just said, I need a radical surgery to be followed by putting ports in underneath your ribs, uh, right side, left side. 00:07:15.439 --> 00:07:19.759 And then they would infuse a chemotherapy after the surgery. 00:07:20.240 --> 00:07:22.240 So that was my journey. 00:07:22.399 --> 00:07:24.240 That's what I ended up doing. 00:07:24.720 --> 00:07:25.680 What years actually? 00:07:26.560 --> 00:07:28.959 That was I was diagnosed in 2007. 00:07:29.439 --> 00:07:36.079 That's when I had the diverticulitis surgery, but they couldn't go in and do any surgery uh for six months. 00:07:36.240 --> 00:07:39.120 So I had my surgery in April of 2008. 00:07:39.600 --> 00:07:40.160 Wow. 00:07:40.399 --> 00:07:45.920 You know, you just kind of and that's like sitting on pins and needles waiting, okay, is it gonna metastasize some more while I'm sitting here? 00:07:46.079 --> 00:07:47.839 You know, journey's tough. 00:07:47.920 --> 00:07:49.600 I mean, you know, you just have to stay positive. 00:07:49.680 --> 00:07:50.480 That's the biggest thing. 00:07:50.560 --> 00:07:52.480 And don't let these negative people come in. 00:07:52.560 --> 00:07:57.600 Like some of the nurse friends of mine would come up to me and go, Oh my god, I feel so I go, no, no, no, no, no. 00:07:57.680 --> 00:07:59.360 Don't I don't I don't need the pity. 00:07:59.519 --> 00:08:01.040 You know, it's like you can't. 00:08:01.199 --> 00:08:04.319 You can't sit there and pity yourself because you that's you're gonna sink. 00:08:04.480 --> 00:08:07.600 So it's kind of like you've got to fight and just go for it. 00:08:07.759 --> 00:08:09.839 And I just said to people, I'll be fine. 00:08:10.000 --> 00:08:12.000 I will do this and I will be fine. 00:08:12.240 --> 00:08:13.279 And that's what I did. 00:08:13.360 --> 00:08:14.800 And it's almost 20 years. 00:08:15.040 --> 00:08:15.519 That's right. 00:08:16.079 --> 00:08:20.000 So you started treatment and then something kind of funny happened along the way. 00:08:20.560 --> 00:08:24.319 Uh, go ahead and tell us what happened about your treatment and how it ended. 00:08:25.120 --> 00:08:29.519 Well, the treatment, um, I don't know. 00:08:29.680 --> 00:08:37.840 Like I ended up having the treatment, going back and forth to New York um for chemotherapy, didn't tolerate the chemo very well. 00:08:38.320 --> 00:08:41.039 Um, was not happy. 00:08:41.200 --> 00:08:50.960 I had this gut feeling that I needed to stop the chemo, which I I mean, it's kind of like you don't really say that to people because you say you gotta follow what the doctors tell you. 00:08:51.120 --> 00:08:56.159 But I just had a bad feeling that I was just getting sicker and sicker on the chemo. 00:08:56.720 --> 00:09:06.000 And I said to them, um, I went to the um mesothelioma conference in New in Washington with ports in. 00:09:06.159 --> 00:09:11.279 I said, I've got to go, I've got to meet some other doctors that I can pick their brains. 00:09:11.840 --> 00:09:19.039 So I got on a plane and I went to New York's mesothelioma conference, you know, that I think it's Moth that does that one. 00:09:19.200 --> 00:09:19.919 Is it Moth? 00:09:20.240 --> 00:09:20.399 Yeah. 00:09:20.799 -->

00:09:24.799 Um, so I went to that and I sat with a doctor from Maryland. 00:09:24.879 --> 00:09:36.960 I don't know how he was just sitting next to me, and people were talking about, you know, and he said to me, he asked me how I was doing and what I was doing, and I told him about my chemo, and he said to me, What's going on? 00:09:37.039 --> 00:09:39.279 And I said, Oh, my kidneys are taking a hit. 00:09:39.440 --> 00:09:42.799 You know, I'm I'm my kidneys aren't functioning as properly. 00:09:42.879 --> 00:09:46.159 You know, because the chemo, you you it's a direct hit on your abdomen. 00:09:46.320 --> 00:09:49.120 It's great that it's not systemic because you don't lose your hair. 00:09:49.279 --> 00:09:52.879 My mop is still here, but you do take a hit to your kidneys. 00:09:52.960 --> 00:09:54.799 Oops, I'm out I'm out here. 00:09:55.679 --> 00:09:56.480 Oh, you're here? 00:09:56.639 --> 00:09:56.960 Yeah. 00:09:57.120 --> 00:09:57.519 You're here. 00:09:57.679 --> 00:09:59.759 Oh, my things, my screen went blank. 00:10:00.240 --> 00:10:03.279 So anyway, so what I did is which I shouldn't have done, but I did. 00:10:03.360 --> 00:10:06.399 I did stop my chemotherapy one treatment ahead. 00:10:06.480 --> 00:10:08.159 Uh like I was due to have one more. 00:10:08.240 --> 00:10:11.039 I had to have six, was the protocol. 00:10:11.200 --> 00:10:16.480 But they poured hot chemotherapy into your abdomen on the when you're on the operating room table. 00:10:16.960 --> 00:10:19.759 So you have that dose of chemotherapy. 00:10:20.000 --> 00:10:24.399 Um so I ended up cutting my therapy. 00:10:24.559 --> 00:10:27.200 I gotta I gotta just put my charger on. 00:10:27.360 --> 00:10:30.159 Um, so by one dose, I did stop it. 00:10:30.480 --> 00:10:34.000 So but I still survive and I'm still here. 00:10:34.320 --> 00:10:37.840 So is that what you were is that what you were talking about, Dave? 00:10:37.919 --> 00:10:38.879 Or was it right? 00:10:38.960 --> 00:10:39.360 Yeah, yeah, yeah. 00:10:40.320 --> 00:10:41.759 Well, no, they were doing a trial, right? 00:10:41.840 --> 00:10:42.960 And they wanted you to continue. 00:10:43.200 --> 00:10:44.960 You were like, nah, not gonna happen. 00:10:45.200 --> 00:10:49.840 I just I just had that gut feeling, but I don't want to tell people to do that, you know. 00:10:49.919 --> 00:10:52.240 Like, that's not what I wanted, you know what I mean? 00:10:52.320 --> 00:10:56.320 Like, I I don't want to tell people to stop their chemo when they really shouldn't. 00:10:56.480 --> 00:11:02.720 I mean, I kind of shouldn't have done what I did, but I kind of had that gut feeling that I needed to stop. 00:11:03.279 --> 00:11:14.320 And I was told I did see neprology at Dana Faba after that, and nephrology said it is a good thing I stopped because my kidneys would just would not, I'd be on dialysis now. 00:11:15.120 --> 00:11:18.320 Because it it does take a hit, you know, your kidneys take a hit. 00:11:18.559 --> 00:11:25.600 Um, so you just gotta follow your gut, you know, and just like say, even though I'm gonna stop it one treatment ahead, I'm gonna be fine. 00:11:25.759 --> 00:11:26.320 You know? 00:11:26.559 --> 00:11:28.080 Yeah, you gotta think positive. 00:11:28.399 --> 00:11:39.039 One of the important things that you said earlier was that you did your research on the doctors that you know you looked at how many mesotheliomic cases someone had taken. 00:11:39.120 --> 00:11:43.679 And and what we try to tell individuals is that it's really important that they do that. 00:11:43.919 --> 00:11:46.720 Um, you know, to find the right person. 00:11:47.120 --> 00:11:52.240 We we hear it all the time, you know, oh, I'm gonna go to the one closest to me because it's convenient. 00:11:52.399 --> 00:11:53.039 Exactly. 00:11:53.279 --> 00:11:59.200 And it's not, you know, in all honesty, it's not always because they don't have the experience. 00:11:59.519 --> 00:12:32.559 And, you know, when there's so few people diagnosed, and I say that um one person is too much, but based on you know the numbers that they show uh on how many people are diagnosed in a year, uh there's not a lot of people diagnosed with mesothelioma, whether it's peritoneal, pleural, or pericardial, um you know, there's not a lot, but but it's really, really and it and and we like to stress that it's really important that you do your research on who's going to be taking care of you. 00:12:32.799 --> 00:12:41.360 And you know, one of the great things about you is you're in the medical field and most people are not, and they don't know what to do. 00:12:41.600 --> 00:12:46.159 And so we, you know, try to guide them uh in the best way that we can. 00:12:46.320 --> 00:12:50.879 We we talk to them and um you know try to get them in the right place. 00:12:51.200 --> 00:12:55.759 Um, and you know, that's how we met uh Lisa and Ellie. 00:12:56.080 --> 00:13:06.159 Um, you know, they're the facility that they work at was, you know, besides having a a great physician, they had the nurses taking care of them. 00:13:06.399 --> 00:13:11.440 Um and so that was, you know, a big plus when we sent people to Boston. 00:13:11.519 --> 00:13:25.360 Um, not saying that Boston's the only place, but right, you know, you you you did your research, but you knew also, did you know a little bit about mesothelioma, or was it research that you did when you found out you had it? 00:13:25.600 --> 00:13:34.000 I mean, I've I had uh taken care of patients with plural mesothelioma, but I never even heard of parent nail mesothelioma. 00:13:34.480 --> 00:13:40.399 And the oncologist at my particular hospital, my local hospital, was willing to take me on. 00:13:40.480 --> 00:13:42.480 I think they just was like, oh, it's a new case. 00:13:42.559 --> 00:13:44.399 You know, we've never had one of these before. 00:13:44.639 --> 00:13:46.720 And I'm like, are you kidding me? 00:13:46.960 --> 00:13:49.039 Like I don't I'm gonna be

number one. 00:13:49.200 --> 00:13:50.799 No, that's not happening. 00:13:50.960 --> 00:13:51.679 That is not happening. 00:13:51.919 --> 00:14:04.639 And it was interesting because in Moth, you you met with a lot of people, and I was talking with girls from the Midwest um who went to local hospitals in their own Kansas. 00:14:05.120 --> 00:14:09.679 And I, you know, I'd be talking to them and I'd say, well, maybe you should get another opinion. 00:14:10.000 --> 00:14:11.360 No, no, I'm good. 00:14:11.519 --> 00:14:13.679 And they would have their treatments there. 00:14:13.840 --> 00:14:19.759 It it's really sad because just exactly what you said, it's local and it's convenient. 00:14:20.159 --> 00:14:22.159 Well, sometimes you have to go out of your comfort zone. 00:14:22.320 --> 00:14:24.320 You think I wanted to travel to New York? 00:14:24.480 --> 00:14:27.600 Traffic is I mean, sometimes it'd be six hours just to get there. 00:14:27.840 --> 00:14:31.600 I mean, no, I didn't want to do that, but I knew there was no other chance for me. 00:14:31.679 --> 00:14:34.240 Um, Boston didn't at the time. 00:14:34.480 --> 00:14:37.120 Dana Faba couldn't administer the chemotherapy. 00:14:37.759 --> 00:14:38.080 Crazy. 00:14:38.720 --> 00:14:48.080 I would have loved to have been in the room when you told Ellie that you had miso, and she said, No, you don't, because it's you know, having worked in this, we hear it all the time. 00:14:48.159 --> 00:14:53.440 I've I had mesothelium about five years ago or six years ago, and you're thinking, Okay, here we go. 00:14:53.679 --> 00:14:54.720 Craig, cray. 00:14:54.960 --> 00:15:01.039 But um how many questions did you have to ask Ellie before you figured out she was right on? 00:15:02.080 --> 00:15:03.039 I don't know, Ellie. 00:15:03.200 --> 00:15:04.000 Ellie's shop. 00:15:04.320 --> 00:15:05.279 She knew. 00:15:06.720 --> 00:15:12.960 Oh, well, I I remember that she was she Julie's very smart, and I was thinking, well, if she's saying it, then she must have it. 00:15:13.039 --> 00:15:14.320 But that's so weird. 00:15:14.480 --> 00:15:14.720 Yeah. 00:15:15.039 --> 00:15:16.080 So strange. 00:15:19.759 --> 00:15:29.120 Now, Julie, you know, for that's it really interesting because you figure since 2008, well, 2007, I was going to Dana Farber. 00:15:29.279 --> 00:15:30.559 I still go to Dana Farber. 00:15:31.360 --> 00:15:41.600 And my oncologist and I, you know, we lock cons because I'm saying to him, You're radiating me way too much. 00:15:41.919 --> 00:15:46.639 I'm having CAT scans, chest, abdomen, and pelvis, every year. 00:15:47.759 --> 00:15:52.320 So I once, about three years ago, got advanced to every two years. 00:15:53.039 --> 00:16:01.679 But the scan showed I have now lung nodules, which as a nurse, many people have lung nodules. 00:16:01.759 --> 00:16:03.279 Many, many people have lung nodules. 00:16:03.360 --> 00:16:10.559 Oh, but because I've had plural peritoneal mesothelioma, I could have pleural mesothelioma now. 00:16:10.639 --> 00:16:14.320 So we have to evaluate my nodules every year now. 00:16:14.720 --> 00:16:18.639 Because they have to make sure that they haven't grown, that they stay the same size. 00:16:18.879 --> 00:16:28.480 But if I was somebody without mesothelioma, they would just look at these nodules and say, Oh, yeah, she's got some nodules, they're small, they're staying the same, this round, they're that the figuration is fine. 00:16:28.799 --> 00:16:33.840 But so we had this argument, and I said to him, I'm done with having this. 00:16:33.919 --> 00:16:34.639 This is ridiculous. 00:16:34.720 --> 00:16:36.240 It's a slow-growing tumor. 00:16:36.399 --> 00:16:37.759 Why do I have to come every year? 00:16:37.919 --> 00:16:48.639 And this part of it's interesting because what his response was was, Do you know how much radiation you're getting when you fly in an airplane? 00:16:49.360 --> 00:16:54.399 So I go, Oh, please, you know, you know, the attitude comes, right? 00:16:54.480 --> 00:16:56.159 Because I have to defend myself, right? 00:16:56.399 --> 00:17:03.759 So he goes, if you fly from Boston to LA, that is equivalent to having a chest x-ray. 00:17:04.400 --> 00:17:07.039 And people don't know it's cosmic radiation. 00:17:07.839 --> 00:17:18.160 When it reaches 30 to 40,000 feet in elevation, you then are susceptible, because the atmosphere's not protecting you anymore, you are then susceptible to cosmic radiation. 00:17:18.400 --> 00:17:21.519 So he's he and I are like Loch and Horns, and now on what am I gonna say? 00:17:21.599 --> 00:17:23.440 I never even heard of cosmic radiation. 00:17:23.680 --> 00:17:24.960 I'm like, oh. 00:17:25.359 --> 00:17:30.480 And he goes, So think about how much people like pilots, they're flying. 00:17:30.799 --> 00:17:33.680 Do you really think they're worried about how much radiation they're getting? 00:17:33.839 --> 00:17:40.960 I said, Well, they should be, obviously, if you're telling me one chess x-ray is from Boston to LA, that's that's significant. 00:17:41.680 --> 00:17:46.400 So, in the further north towards the poles you go is more radiation. 00:17:46.720 --> 00:17:50.880 Whatever the, I don't know what the reasoning, but he had it all figured out for me. 00:17:51.440 --> 00:17:54.160 So he says, You think about that. 00:17:54.240 --> 00:18:02.720 And it's really interesting if you Google, like European and South Korea, those countries are much more, they take it much more serious. 00:18:02.880 --> 00:18:14.079 Their pilots, um, they do flight data on computerized flight data on where they're going, how much radiation is there, on, and their amount of radiation that they're occurring. 00:18:14.559 --> 00:18:16.559 And if they want, they can wear the badges. 00:18:16.720 --> 00:18:18.640 You know, just like rad techs at the hospital. 00:18:18.880 --> 00:18:21.359 Rad techs wear little badges to see how much radiation. 00:18:21.680 --> 00:18:28.720 Well, they um

don't mandate it, it's not legal, but a lot of them are wearing um badges to count the radiation on flying. 00:18:28.880 --> 00:18:33.200 So we say to me, you know, Julie, you know, you're going and you're having these every year. 00:18:33.359 --> 00:18:34.400 So what could I say? 00:18:34.559 --> 00:18:36.000 I don't even know possible the radiation. 00:18:36.160 --> 00:18:36.720 You know what I mean? 00:18:36.799 --> 00:18:37.759 I was done. 00:18:38.960 --> 00:18:42.640 I actually watched a lecture on this not too long ago, and that's very true. 00:18:42.799 --> 00:18:49.119 So a trip to the moon would be equivalent to years of heavy, heavy cigarette smoking. 00:18:49.279 --> 00:19:03.039 Because it's not only radiation, but it's the worst kind of radiation because when it hits our atmosphere, it's knocked down and and diminished a little bit or diverted around the poles where you see the uh the northern lights. 00:19:03.119 --> 00:19:05.519 So I better shut up or Anna kind of elbow me. 00:19:07.119 --> 00:19:08.240 I did you know that? 00:19:08.319 --> 00:19:10.720 See, I didn't I didn't know any of that, you know? 00:19:10.960 --> 00:19:13.759 Yeah, absolutely no idea about this radiation thing. 00:19:13.839 --> 00:19:18.960 And maybe it was better that I didn't know because then you know now I'm not gonna fly somewhere. 00:19:19.119 --> 00:19:35.519 So um, I mean, you were, you know, being in the medical field, it was very helpful for you, but most people that we deal with um don't have that type of education and they're they're basically lost. 00:19:35.680 --> 00:19:46.319 But one of the things, um, so I you know, I I'm so glad, you know, you're still here with us, and I'm so glad to be able to talk to you about all of what you did. 00:19:46.559 --> 00:19:56.640 Um, and maybe uh when someone hears this, they'll understand why we say it's important for you to do your research um and find the right person. 00:19:56.880 --> 00:20:19.920 And um when you um you said one of the things you mentioned um was that you went outside of just the medical field because uh we I've talked to someone before in the uh about you know health, mental health. 00:20:20.079 --> 00:20:26.400 Um you had or you did seek help in that capacity as well, am I correct? 00:20:26.720 --> 00:20:27.599 Uh mental health? 00:20:27.759 --> 00:20:30.400 No, I had no support system, nothing. 00:20:30.559 --> 00:20:41.759 No, it was it really was sad that New York, I mean, where I didn't live there, they they were support systems there if I lived there that I could have gone to. 00:20:42.559 --> 00:20:50.640 Um they New York offers you uh Oprah Oprah Winthree supplies a house in Manhattan. 00:20:50.799 --> 00:20:57.119 Oh right in Times Square that she will allow you to stay in while you're going through your treatments. 00:20:57.279 --> 00:21:01.599 And she tried you can just there's a box that just says offering. 00:21:01.920 --> 00:21:05.680 And it's it's really nice to be there. 00:21:05.839 --> 00:21:12.079 You're with everybody who's in getting chemo at at New York Presbyterian. 00:21:12.240 --> 00:21:16.319 So it's it's it's a good, it's a healthy, it's healthy, it's good and it isn't. 00:21:16.480 --> 00:21:20.799 Um, because some people are really sick, and I try to sit there with them and support them. 00:21:20.880 --> 00:21:25.519 So then I feel good that I've helped them, but then I'm more depressed because then I'm worried about them. 00:21:25.759 --> 00:21:28.799 You know, but it it is a good opportunity. 00:21:29.279 --> 00:21:34.319 People that don't have any money that you can stay in New York for uh whatever whatever you want. 00:21:34.400 --> 00:21:37.920 You could throw 20 bucks in the thing um for a night stay. 00:21:38.000 --> 00:21:43.759 And it's a it's a condo that has three bedrooms, and we all share the same, and that's what I did. 00:21:44.319 --> 00:21:47.440 You know that was my social work. 00:21:47.759 --> 00:21:51.039 Did you have any social workers or anything like that in your own notes? 00:21:51.680 --> 00:21:53.440 I had not no, I had nothing. 00:21:53.519 --> 00:21:55.440 I had Ellie, is that unusual? 00:21:55.599 --> 00:21:58.240 I mean, most patients have that support there in Boston, right? 00:21:58.319 --> 00:22:01.440 I understand she's in New York at different Playing field, but yeah. 00:22:01.599 --> 00:22:07.839 I mean most of the places have a team, but the you know, peritoneal is, you know, rare. 00:22:08.160 --> 00:22:08.559 Yeah. 00:22:08.720 --> 00:22:12.960 So that's I can see where I can see where you wouldn't have had anyone. 00:22:13.359 --> 00:22:19.279 Well, I think if I lived in Manhattan or r lived in New York, they would have set me up with someone to follow. 00:22:19.599 --> 00:22:27.839 I would think they would, you know, but where I was going back, they probably just assumed my PCP or somebody would set me, you know, but I wasn't seeing them. 00:22:28.000 --> 00:22:32.559 All I was seeing was New York, I was doing was going back for uh chemotherapy. 00:22:32.880 --> 00:22:33.039 Right. 00:22:33.119 --> 00:22:36.319 Maybe if you could diagnose that from the jump, maybe it would be. 00:22:36.559 --> 00:22:38.240 I wanted to go back to what you said earlier. 00:22:38.319 --> 00:22:39.039 You had nodules. 00:22:39.119 --> 00:22:46.559 So nodules are an indication you have asbestos in your lungs and uh you know your body is wrapping calcium carbonate around it, just like a pearl, right? 00:22:46.640 --> 00:22:52.319 But where where nodules, nodules are just they they don't not from they're not from asbestos. 00:22:52.559 --> 00:22:56.240 My nodules, they're just they can be from inflammatory processes. 00:22:56.400 --> 00:22:56.720 Oh really? 00:22:56.960 --> 00:22:58.960 Nodules don't have to be from asbestos. 00:22:59.279 --> 00:22:59.680 Uh-huh. 00:23:00.079 --> 00:23:06.079 You know, they're just a lot of time asbestos victims will have those patients of

that. 00:23:06.880 --> 00:23:08.720 So what was your exposure? 00:23:09.359 --> 00:23:12.640 Well, my exposure to mesothelioma, what I think. 00:23:12.880 --> 00:23:13.119 Uh-huh. 00:23:13.680 --> 00:23:14.480 Is that what you're asking? 00:23:14.640 --> 00:23:19.680 Um, so when I was a kid, I lived in the city right outside of Boston. 00:23:19.839 --> 00:23:26.079 Um, I in a town that it was um some of all it's the houses were like right on top of each other. 00:23:26.400 --> 00:23:31.359 So the house next door to us were they were putting on asbestos siding. 00:23:31.680 --> 00:23:33.599 And there was, we were the only ones. 00:23:33.680 --> 00:23:41.920 We had a small driveway, and one of the build the guys putting it on said to my dad, Hey, can we cut the asbestos in your driveway? 00:23:42.079 --> 00:23:45.519 You know, the shingles, cut the shingles because they had to fit them to size. 00:23:45.680 --> 00:23:48.319 So my father goes, Oh yeah, you can use our driveway. 00:23:48.480 --> 00:23:50.799 So I sat beside the machine that was cutting. 00:23:50.880 --> 00:23:54.960 You know, it's like a saw that cuts the shingles and all the powder. 00:23:55.119 --> 00:23:58.079 And I'm sitting there making little houses with the shingles. 00:23:58.240 --> 00:24:02.079 You know, I was like probably seven, eight, nine, somewhere around there. 00:24:02.240 --> 00:24:04.079 And I sat there and I made these little things. 00:24:04.160 --> 00:24:08.079 So it would be in my mouth, you know, and but I didn't know what that stuff was. 00:24:08.160 --> 00:24:11.039 I'd go spit it out, not a big deal. 00:24:11.440 --> 00:24:17.359 But I must, they think I swallowed it and it got into my GI tract that way. 00:24:17.599 --> 00:24:18.880 That's just one of my ways. 00:24:19.039 --> 00:24:22.480 I worked as a nurse in this hospital that was really run down. 00:24:22.799 --> 00:24:27.759 There were asbestos pipes, and we had to cut through that to get to um the cafeteria. 00:24:28.079 --> 00:24:33.920 So cutting through that area, there it was you could it was all asbestos. 00:24:34.400 --> 00:24:37.359 My own my own house had asbestos in the basement. 00:24:37.599 --> 00:24:38.960 What about talcum powder? 00:24:39.039 --> 00:24:40.559 Did you use any talcum powders? 00:24:40.880 --> 00:24:41.359 Always. 00:24:42.079 --> 00:24:42.559 Always. 00:24:43.119 --> 00:24:43.680 Yeah. 00:24:46.799 --> 00:24:52.720 About 40, 30 to 40 percent of our clients now are people that had almost no exposure, but they use talcum powder. 00:24:52.880 --> 00:24:58.079 So it's kind of that's kind of a shift over the last 10 years, yeah. 00:24:58.160 --> 00:25:00.640 So Anna had some other questions for you. 00:25:00.799 --> 00:25:22.559 Well, no, I just um so you've you've kind of mentioned where you are now, um, you know, your your annual visits with uh is there anything else or is or or maybe I should ask the question, what what advice would you have for others that are diagnosed with mesothelioma, whether it's peritoneal pleural or pericardial? 00:25:22.880 --> 00:25:30.240 Um I would just tell people it's a tough road, but you have to stay positive. 00:25:30.799 --> 00:25:38.400 And I really think when you get down, you just have to, you can't, you just it's real hard. 00:25:38.640 --> 00:25:47.359 I mean, there were times when I mean it's it can be really hard, you know, some of that chemo, but you you just have to think through this tunnel. 00:25:47.440 --> 00:25:50.640 You're gonna get through this, and there's light at that end of that tunnel. 00:25:50.880 --> 00:25:56.400 And you know, I don't think sometimes I think nursing, being a nurse, has its setbacks. 00:25:56.559 --> 00:26:12.240 You know, you might think, oh, well, it's great to be a nurse because you can figure things out and you know the signs and symptoms, but you also become more of um, you know, you get your lab reports back, and I look in my sodium's like in the tubes in the 120s, and I'm like, oh my God, why is my sodium? 00:26:12.319 --> 00:26:12.799 You know what I mean? 00:26:12.960 --> 00:26:16.079 Whereas some people would say, oh, oh, I should just have a little salt. 00:26:16.480 --> 00:26:19.680 So my mind then takes it to the next level. 00:26:19.920 --> 00:26:24.079 So nursing isn't always an am at positive asset. 00:26:24.240 --> 00:26:24.799 You know what I mean? 00:26:24.880 --> 00:26:29.440 Like I look at my sodium level and I'm like, oh my God, why is it this low? 00:26:29.599 --> 00:26:30.640 What's wrong with my kidneys? 00:26:30.720 --> 00:26:31.519 Why, you know what I mean? 00:26:31.599 --> 00:26:33.599 It's like, oh, this isn't good, you know. 00:26:33.759 --> 00:26:35.759 Then you become like the little crazy lady. 00:26:36.079 --> 00:26:36.400 You do? 00:26:37.200 --> 00:26:44.160 So so Lisa and Ellie, you probably haven't had a lot of opportunities to talk to somebody who's 16, 17. 00:26:44.240 --> 00:26:46.640 It's been 17 years, 16 years, 19. 00:26:46.880 --> 00:26:47.359 19 years. 00:26:47.680 --> 00:26:47.920 Wow. 00:26:48.079 --> 00:26:48.480 Wow. 00:26:48.720 --> 00:26:50.079 Uh that that's this far. 00:26:50.319 --> 00:26:51.599 I mean, it's kind of cool doing that. 00:26:51.759 --> 00:26:54.559 What what is your is it kind of surreal a little bit? 00:26:54.640 --> 00:26:57.440 Or I mean, how many times could you say this has happened, right? 00:26:57.599 --> 00:27:04.240 Somebody who really had miso, not one of those people that had, you know, symptoms or whatever. 00:27:05.039 --> 00:27:06.640 I think and it had spread. 00:27:06.720 --> 00:27:07.920 So you got metastatic. 00:27:09.200 --> 00:27:11.119 Metastatic, absolutely, right, right. 00:27:11.279 --> 00:27:14.400 It means that a little, you know, that's another plus there, you know? 00:27:16.480 --> 00:27:17.839 Creditors do here, you know? 00:27:18.160 --> 00:27:21.279 I think the most impressive thing about you, Julie, is you are so upbeat. 00:27:21.359 -->

00:27:24.880 Like, I feel like that's just so inspirational, and that's what people have to hear. 00:27:25.039 --> 00:27:25.359 Yeah. 00:27:25.599 --> 00:27:30.720 I uh couldn't thank you enough for sharing your story today, because really I I it's unbelievable. 00:27:30.960 --> 00:27:33.119 And I actually just went to the gym the other day. 00:27:33.200 --> 00:27:37.759 I was telling Ellie, and uh a friend of a friend has peritoneal meso. 00:27:37.920 --> 00:27:40.000 So I'm actually gonna tell her to watch this video. 00:27:40.559 --> 00:27:45.359 Really, like I just you really do when so much people start that pity stuff, you know. 00:27:45.599 --> 00:27:46.799 Oh, I'm so sorry. 00:27:46.880 --> 00:27:48.559 No, you're like, no, no, no, no, no. 00:27:48.640 --> 00:27:49.440 I don't want to hear that. 00:27:49.839 --> 00:27:53.279 I'm like, I'm gonna beat this, and you really have to believe that. 00:27:53.359 --> 00:27:54.960 Yeah, and I truly believed it. 00:27:55.119 --> 00:27:56.880 I believed I was gonna make it. 00:27:57.119 --> 00:28:01.440 You didn't had no negative, and I didn't allow people to be near me that were negative. 00:28:01.599 --> 00:28:02.799 You just have to stay positive. 00:28:02.880 --> 00:28:03.680 And I believe it. 00:28:03.759 --> 00:28:08.240 It does something to your brain, and I don't know what else it does to you, but it makes you go through. 00:28:08.480 --> 00:28:11.039 You know what we ought to do on your I gotta run, you guys. 00:28:11.440 --> 00:28:14.559 On your 10th anniversary, we should send you a can you hear me? 00:28:14.720 --> 00:28:15.279 Hi, Lisa. 00:28:16.799 --> 00:28:16.960 Bye. 00:28:17.200 --> 00:28:18.240 Wait, wait, Lisa, wait. 00:28:18.720 --> 00:28:18.880 What? 00:28:18.960 --> 00:28:19.680 I gotta run. 00:28:20.640 --> 00:28:21.759 We don't want you on here anyway. 00:28:21.920 --> 00:28:30.240 Hey, I think we should do is uh is uh get your get her a cake and some flowers, right, and then celebrate her 20th, right? 00:28:30.400 --> 00:28:32.240 We should try why not? 00:28:32.799 --> 00:28:35.759 I yeah, but you know buy champagne or something. 00:28:36.559 --> 00:28:44.000 But you know, you hear this all the time that you know you have to have a positive attitude, and you know, sugar baker used to preach it all the time, you know. 00:28:44.400 --> 00:28:47.920 Ants, no it no negative thoughts are allowed. 00:28:48.160 --> 00:28:49.200 You can't, you really can't. 00:28:49.279 --> 00:28:50.640 It's really, really true. 00:28:50.880 --> 00:28:56.559 But you it's oh we may have that's 30 minutes. 00:28:57.039 --> 00:28:58.079 But it shouldn't stop. 00:28:58.319 --> 00:28:59.519 29.58. 00:28:59.680 --> 00:28:59.920 Yep. 00:29:00.319 --> 00:29:03.599 Yeah, we so I think I think we should have you recurrent. 00:29:03.920 --> 00:29:04.720 You know what I mean? 00:29:04.799 --> 00:29:08.480 Like have you know, connect you with other patients. 00:29:08.799 --> 00:29:10.400 I would love to help other people. 00:29:10.480 --> 00:29:11.839 I would do it in a heartbeat. 00:29:12.000 --> 00:29:12.400 No problem. 00:29:12.960 --> 00:29:16.799 If there's someone that needs to talk to me, uh just give them my phone number. 00:29:16.960 --> 00:29:18.160 I would truly mean that. 00:29:18.319 --> 00:29:19.200 I will talk to them. 00:29:20.480 --> 00:29:22.000 Well, yeah, we definitely love that. 00:29:22.160 --> 00:29:25.039 You have a saying, um, I believe. 00:29:25.279 --> 00:29:31.839 It's it's uh follow your heart, follow your gut, and don't forget to go out and dance. 00:29:32.079 --> 00:29:33.119 Do Zumba. 00:29:33.200 --> 00:29:33.359 Yeah. 00:29:33.680 --> 00:29:34.640 That's what I did. 00:29:34.960 --> 00:29:37.839 I danced Zumba weekly. 00:29:39.039 --> 00:29:42.720 I went to these classes sometimes and I couldn't even bend over. 00:29:42.880 --> 00:29:45.039 They gave me a chair, but I was there. 00:29:45.200 --> 00:29:47.920 The music, you listen to that music, and I was there. 00:29:48.000 --> 00:29:50.160 And I didn't care who looked at me or who laughed at me. 00:29:50.319 --> 00:29:53.279 I went there and I could move my arms, I still went. 00:29:53.599 --> 00:29:54.160 Good for you. 00:29:54.240 --> 00:29:55.680 Yeah, that's amazing. 00:29:55.839 --> 00:30:01.200 That's wow, what a positive uh thing to talk to us about. 00:30:01.440 --> 00:30:03.119 Listen, we're we're so excited. 00:30:03.200 --> 00:30:08.880 And I I I think Dave has a great idea of celebrating on your 20th uh anniversary. 00:30:09.200 --> 00:30:12.319 Um who doesn't like cake, right? 00:30:14.000 --> 00:30:24.160 But uh, you know, it's just so amazing when we do get to talk to individuals that have been diagnosed and they've survived for the number of years, you know, 20 years. 00:30:24.240 --> 00:30:26.559 I think maybe that's the highest I've heard. 00:30:26.720 --> 00:30:28.400 Um, and that's just amazing. 00:30:28.480 --> 00:30:34.079 And and and what you're what you say is you have to have that determination to live. 00:30:34.240 --> 00:30:36.079 You have to want to survive. 00:30:36.400 --> 00:30:36.720 Exactly. 00:30:36.960 --> 00:30:52.079 And I know that there are so many downtimes when you go through all this, you know, the surgeries, the chemotherapy, you know, but just having that positive outlook is what I keep hearing is that you just wanna you you've gotta want to live. 00:30:52.559 --> 00:30:57.119 Well, we're gonna we're gonna go ahead and conclude for today, but definitely we're doing the 20th. 00:30:57.359 --> 00:31:01.920 And uh Ellie will, if she doesn't cake and champagne, we'll have it, right? 00:31:02.720 --> 00:31:03.599 All three of us, right? 00:31:03.759 --> 00:31:05.680 We'll all be drinking cake, right? 00:31:07.039 --> 00:31:08.240 Sounds good to me. 00:31:08.400 --> 00:31:11.599 Well, Julie, thanks for putting up with us, and uh, we'll see you again. 00:31:11.680 --> 00:31:14.240 And and we're definitely gonna have you talk to some of our clients. 00:31:14.799 --> 00:31:15.359 I would love to. 00:31:15.519 --> 00:31:16.160 I would love to. 00:31:16.319 --> 00:31:16.720 Awesome. 00:31:16.880 --> 00:31:18.160 Do it anytime you want. 00:31:18.319 --> 00:31:18.559 All right. 00:31:18.880 --> 00:31:20.559 Ellie I'll do it. 00:31:20.880 --> 00:31:21.359 Thanks, guys. 00:31:22.400 --> 00:31:23.039 I'm glad she left. 00:31:24.559 --> 00:31:24.799 Bye. 00:31:26.000 --> 00:31:26.559 Bye, guys. 00:31:26.720 --> 00:31:27.599 Bye bye. 00:31:28.960 --> 00:31:33.440 Thank you for listening to Miso, the Miso Thelioma podcast. 00:31:33.599 --> 00:31:41.519 For more information, resources, and support, visit our sponsors, Danziger and Diano, at dandel.com.