Latest / Just Cut It Out Podcast / Just Cut It Out Podcast | Breast Cancer in the Middle of Liver Failure: Jamie Lane’s Story

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Just Cut It Out Podcast | Breast Cancer in the Middle of Liver Failure: Jamie Lane’s Story · Just Cut It Out Podcast

• 0:01
  SPEAKER_02: I'm Dr.
• 0:02
  SPEAKER_02: Kim Brown, and this is Just Cut It Out, where we talk about how the experience of a cancer diagnosis has made people think differently about what it means to them to live a good life.
• 0:17
  SPEAKER_02: Each episode we cover a little bit of practical wisdom and a little bit of big picture.
• 0:22
  SPEAKER_02: What does this all mean through conversations with patients, their families, and teams who take care of them?
• 0:32
  SPEAKER_02: Welcome.
• 0:33
  SPEAKER_02: I'm Dr.
• 0:33
  SPEAKER_02: Kimberly Brown, and this is Just Cut It Out.
• 0:37
  SPEAKER_02: Today, my guest is Jamie, an amazing human, a daughter, wife, mother, an avid knitter.
• 0:44
  SPEAKER_02: And in fact, I'm wearing a sweater that she knit for me here.
• 0:47
  SPEAKER_02: She is a two-time organ transplant recipient and a breast cancer survivor.
• 0:54
  SPEAKER_02: In addition to talking about the surgical decision making around lumbectomy and mastectomy, we're going to hear about Jamie's very unique experience of getting a breast cancer diagnosis while being faced with a larger health crisis of liver failure, being worked up to become an organ transplant recipient with her daughter being considered to be a living donor.
• 1:16
  SPEAKER_02: I think what you're going to take away from this episode is some really clear pictures of how Jamie has served as a strong self-advocate for her health in a chronic health condition that's scary with a lot of interactions with a lot of complex parts of our healthcare system.
• 1:33
  SPEAKER_02: I think you're going to hear a little bit about how Jamie has managed anxiety, very severe anxiety that comes from having a chronic health condition and a lot of uncertainty about when or if this will ever be over.
• 1:45
  SPEAKER_02: And then lastly, I think you're going to come away with a picture of how Jamie chooses to show up in the world and how that influences the experience that she has and the outcomes that she gets.
• 1:55
  SPEAKER_02: So with that, Jamie, welcome.
• 1:57
  SPEAKER_02: I'm so excited to have you here on the podcast.
• 1:59
  SPEAKER_02: Thank you for joining me.
• 2:01
  SPEAKER_02: Thank you for yeah, thank you for having me.
• 2:04
  SPEAKER_02: Well, so breast cancer is never like a convenient diagnosis to get.
• 2:09
  SPEAKER_02: Yours is particularly unique because of when it showed up in the course of other events in your life.
• 2:16
  SPEAKER_02: Let's start with our like how did we come to know each other?
• 2:19
  SPEAKER_02: Let's back up and start at the beginning of the story.
• 2:22
  SPEAKER_00: Well, so I I have, I mean, I will start with the fact that what led me to those organ transplants is a hereditary disease in my family called polycystic liver.
• 2:32
  SPEAKER_00: Well, polycystic kidney disease was what I thought I had, but it wasn't until we moved here that I found out that I also had polycystic liver disease.
• 2:41
  SPEAKER_00: And I did go to one doctor to try and get some help to relieve some of the big custom that I had in my abdomen.
• 2:48
  SPEAKER_00: And I, that person told me no.
• 2:51
  SPEAKER_00: And as you know me very well, I don't take over however very, very, very easily.
• 2:57
  SPEAKER_00: So that was the beginning of my unbelievable like advocacy for myself to see if there would be someone who could help me.
• 3:04
  SPEAKER_00: So I did have a gastroenterologist who said, I know someone who can help you.
• 3:09
  SPEAKER_00: Because I looked at him with tears in my eyes and said, I'm 50 something.
• 3:12
  SPEAKER_00: Well, I don't even remember that 50 years old.
• 3:14
  SPEAKER_00: And this is ridiculous.
• 3:16
  SPEAKER_00: I've been nasty my whole life.
• 3:17
  SPEAKER_00: I'm healthy, and but I can't run down and tie my shoes because of this abdomen.
• 3:21
  SPEAKER_00: Like you need, and uh that was how and I got to see you.
• 3:24
  SPEAKER_00: And I I really it's gonna make me cry, but I I won't ever forget meeting you for the first time because I do know that one of your closest friends um has some similarities to things that I've been dealing with, and so we can we immediately bonded because I looked at you and you're also an athlete and you you know take such good care of yourself.
• 3:42
  SPEAKER_00: And I just said, I just want to be able to do things with my husband and be healthy and not have this.
• 3:48
  SPEAKER_00: And and I know it really struck a chord with you.
• 3:51
  SPEAKER_00: So we we that was how we met in your office, me crying saying, Please help me because I can't do this anymore.
• 3:57
  SPEAKER_02: So your liver disease basically your whole liver was replaced with cis, like completely replaced by cis, and it was larger than a normal liver, so your belly was sticking out, and when you would try to bend over the pressure of all that would keep you from being able to like take a deep breath or or do movements that you wanted to do just as part of daily life, much less activity.
• 4:17
  SPEAKER_00: Yeah, it was.
• 4:18
  SPEAKER_00: I mean, it was a normal liver, for those of you who don't know, it should be three pounds.
• 4:22
  SPEAKER_00: Mine at the time that I had my transplant was 24 pounds.
• 4:27
  SPEAKER_00: It's not really cute when you're 50 years old and people ask you when you're due.
• 4:31
  SPEAKER_00: So yeah, I was ready to not look like that anymore and be healthier.
• 4:36
  SPEAKER_02: So we did a surgery to take out or to unroof one of the cysts that was particularly symptomatic.
• 4:42
  SPEAKER_02: In general, you don't always operate on patients with this condition, but we felt we talked about the risks and the benefits and and made kind of a shared decision making.
• 4:49
  SPEAKER_02: Yes.
• 4:50
  SPEAKER_02: All right, and so then you got better and you went and you did the things you wanted to do until and then uh yeah, I ended up with an umbilical hernia.
• 4:59
  SPEAKER_00: And I think I do want to throw in there because I always tell everyone that the first time we met, you also did say if we decided to do something, you need to know your liver can get angry.
• 5:08
  SPEAKER_00: Because I know that my case was very it was, yeah, I feel like it was very upsetting too because you never would want one of your patients to get more sick when you're trying to help them.
• 5:18
  SPEAKER_00: And so we both had broken hearts for each other because it did lead to to me not being the most it did now, but see it there was a reason that you became my doctor.
• 5:30
  SPEAKER_00: But yeah, I had an umbilical hernia and told you this thing is sticking, my belly button's sticking out this much, and you're like, all right, well, again, know that I'm going into this abdomen.
• 5:40
  SPEAKER_00: And so yeah, we had you went in and fixed it, and it was beautiful.
• 5:43
  SPEAKER_00: It was the most beautiful belly that I ever had.
• 5:46
  SPEAKER_00: And then I got and then I got really sick.
• 5:48
  SPEAKER_00: My abdomen did say, you know, we're done, you know.
• 5:52
  SPEAKER_00: Right.
• 5:52
  SPEAKER_02: So so your liver decompensated, and in the it can look like different things to different people.
• 5:59
  SPEAKER_02: Um, I don't recall you ever turning yellow, but what happened is your liver started, couldn't produce or process the fluid that was circulating and it built up in your abdomen.
• 6:09
  SPEAKER_02: And so you were going into a radiologist's office, they put like a needle and then a catheter into your abdomen and drain off five liters of fluid every week.
• 6:19
  SPEAKER_02: Every week.
• 6:20
  SPEAKER_02: Okay.
• 6:21
  SPEAKER_02: And at that point, then it became clear you were losing fluid, nutrition, you were working so hard to keep your nutrition up, but this was not gonna get better, and you started the process of getting on the liver transplant list.
• 6:33
  SPEAKER_00: I got really sick in January, and then by March they were like, um, yeah, there's only one way to fix this, and you need a liver transplant.
• 6:41
  SPEAKER_00: And I just remember being like, wait, what?
• 6:43
  SPEAKER_00: Because I knew all of my life a kidney transplant was probably in my future, but this was, yeah, wasn't it?
• 6:49
  SPEAKER_00: Not what you're expecting.
• 6:50
  SPEAKER_02: Yes.
• 6:50
  SPEAKER_02: And when you get on a liver transplant list, you basically have to wait for somebody to die and have them donate their organs or their family, which is an incredibly beautiful gift of life for many people.
• 7:01
  SPEAKER_02: And we could do a whole episode on that.
• 7:04
  SPEAKER_02: However, you have to be sick enough to be at the top of the list when the right liver comes available.
• 7:09
  SPEAKER_02: So many people will, well, maybe some people is a better word, will look for um a donor in somebody who's either related or even not related, but compatible with them.
• 7:21
  SPEAKER_01: Yeah.
• 7:21
  SPEAKER_02: And in this case, it was your daughter.
• 7:24
  SPEAKER_00: Yeah.
• 7:24
  SPEAKER_00: Even though I didn't want it to be her because she was in her senior year of playing D1 soccer.
• 7:29
  SPEAKER_00: But yeah, she um, my husband, there were actually a number of people who, you know, we put the call out, okay, who wants to step in and do this?
• 7:37
  SPEAKER_00: And I actually very surprisingly had, I apparently I broke the record for the most people that like filled out that questionnaire wanting to donate to me, 32 people, which I don't know.
• 7:47
  SPEAKER_00: I I kind of laughed because I I was like, oh, I guess, excuse my language, everyone, I guess I'm not an asshole because look at all these people who want to come forward.
• 7:55
  SPEAKER_00: And yeah, I guess I'm not that I anyway.
• 7:58
  SPEAKER_00: I mean, that's my joke.
• 7:59
  SPEAKER_00: But yeah, so I did not want my daughter to do it.
• 8:01
  SPEAKER_00: At the time, we thought she was a different blood type because she had done a test in her biology class in college, which kind of tracks with Cam.
• 8:08
  SPEAKER_00: Um, she's brilliant, she's very smart.
• 8:10
  SPEAKER_00: But the fact that she did this test and it and she thought her blood type was different, but yeah, so once we realized it was the right blood type, then she would there's she would, you know, I couldn't.
• 8:20
  SPEAKER_00: I mean, I could say no, but I wasn't gonna say no.
• 8:22
  SPEAKER_00: Because I mean, also, who doesn't want the 22-year-old liver when, you know, everyone else was my husband?
• 8:28
  SPEAKER_00: Also, was probably going to be a match, but yeah, so she was a match, and that was, but I don't even think we found that out until we found out the other stuff.
• 8:37
  SPEAKER_02: So, as you're getting worked up for a transplant, one of the things that is done is you want to make sure there's no conditions that would be exacerbated or worsened by the immunosuppression.
• 8:47
  SPEAKER_02: So cancer is one of those.
• 8:50
  SPEAKER_02: So you got a colonoscopy.
• 8:52
  SPEAKER_02: Everything.
• 8:52
  SPEAKER_02: And you got a mammogram, and the mammogram showed an abnormality.
• 8:56
  SPEAKER_00: You had a biopsy, and that showed in both breasts, which is like, wait, what?
• 9:00
  SPEAKER_00: Because I go and get one every.
• 9:02
  SPEAKER_00: I've I've always done a mammogram every single year.
• 9:04
  SPEAKER_00: Yes, of course I have.
• 9:06
  SPEAKER_02: Because you are an amazing health self self-advocate.
• 9:09
  SPEAKER_02: So you had uh ductal carcinoma in situ, so an early breast cancer.
• 9:13
  SPEAKER_02: Yes.
• 9:14
  SPEAKER_02: That means that the cancer cells are still confined to the ducts of the breast, they haven't started invading.
• 9:20
  SPEAKER_02: So that's why we do screening mammograms, because if you can catch cancer early at an earlier stage, it's a much better prognosis, and the treatments are not as um uh severe.
• 9:31
  SPEAKER_02: So we don't give chemotherapy for you know ductal carcinoma and site two, for example.
• 9:36
  SPEAKER_02: So then we got to meet again.
• 9:39
  SPEAKER_00: And and we should say it, the the the craziest part about this story was that you were the one who and the thing is like I actually don't even, I think you just were keeping an eye on records because you knew that I was having that done.
• 9:53
  SPEAKER_00: And yeah, so I was in the middle of getting a paracentesis.
• 9:57
  SPEAKER_00: I legitimately had, I was laying on the table and I had the the the catheter, like it was in my abdomen getting the drain out when and you called me.
• 10:07
  SPEAKER_00: And I and you have to stay still because if you move, you could actually pop it out and you called and you said, Hey.
• 10:14
  SPEAKER_00: So and I was just like, I couldn't saw this report.
• 10:18
  SPEAKER_00: Yeah, and yeah, and so it just I would remember hanging up the phone and looking to the two guys who had been my same guys who had been work, you know, I we became friends at that point, and I said, I have fucking cancer, and they were like, What?
• 10:34
  SPEAKER_00: And I said, Yeah, like laying there in liver failure and all of that, and it just was like yeah.
• 10:42
  SPEAKER_00: And I remember afterwards I called you and I could go into the car and then I could cry because I couldn't do anything, I couldn't react because of how I was.
• 10:49
  SPEAKER_00: So yeah, but I'm very grateful that you were the one who were able to call me and talk to me because I just didn't even know, like my I I didn't even know where to go with that information.
• 10:58
  SPEAKER_02: Yeah, and at that point, you were on a timeline where you had kind of a surgery date in mind, and now we had to stop and do this.
• 11:07
  SPEAKER_02: So we talked about the options of a lumpectomy or a mastectomy, yes, and it was a small area, um, and so we could remove just that part of the breast with the DCIS in it, and then you would go on to have radiation so that the chance of it coming back is reduced, yes, um, comparable to that of mastectomy.
• 11:30
  SPEAKER_02: Um if you had gotten a mastectomy, you wouldn't have necessarily had to have the radiation.
• 11:36
  SPEAKER_02: And so, how did you think about those choices?
• 11:38
  SPEAKER_00: And and I will say the irony that I came to you, by the way, the surgical oncologist to do my liver stuff first, and then I mean, I that that always makes I know I shouldn't laugh, but that's just how I deal with everything.
• 11:50
  SPEAKER_00: So, yeah, I think for me in my brain, I don't know.
• 11:54
  SPEAKER_00: I I've thought a lot about this because I know that, you know, I to talk about it, but I think I just wanted to be able to do whatever was the best for me in that time to be able to get my liver transplant.
• 12:06
  SPEAKER_00: And I also was really concerned because I knew that doing any sort of reconstruction, I mean, I knew I could do it at the same time, but I I just also was worried about healing because I was already so sick.
• 12:19
  SPEAKER_00: I mean, I look at pictures of myself, and every time I got one of those parasenties, I mean, it was basically taking, I mean, I was just this shrinking thing.
• 12:26
  SPEAKER_00: I look, I was so gaunt and so sick.
• 12:28
  SPEAKER_00: And so I just, it was hard.
• 12:31
  SPEAKER_00: You know, and there are some times where I'm like, maybe I should have done, I mean, not because anything has happened since then, but I don't know, you know, I just knew like, get this done.
• 12:38
  SPEAKER_00: Like, when can we, you know, again, how I usually deal with things.
• 12:41
  SPEAKER_00: I deal with the sad part first and sit in it for a few hours or a day, but then I'm like, okay, what like what's how do we fix it?
• 12:48
  SPEAKER_00: What do we do?
• 12:49
  SPEAKER_00: And I think we decided that that probably was the best way that not the I don't want to do the fastest thing, but the the the safest thing for me to be able to then get my liver transplant as soon as possible.
• 13:01
  SPEAKER_00: So and as it turns out, the radiation didn't really delay your transplants charger.
• 13:07
  SPEAKER_00: It did.
• 13:08
  SPEAKER_00: Because they wanted me to wait, because I did, I I had to wait, they wait, made me wait one month, you know, afterwards, which which isn't bad.
• 13:16
  SPEAKER_00: So yeah, so I did that and then waited a month and then got my transplant.
• 13:20
  SPEAKER_02: And and you recovered from that.
• 13:23
  SPEAKER_02: That was a you were pretty sick after that, but also better because now you had a functioning organ.
• 13:29
  SPEAKER_02: So even though you woke up in the ICU and your husband had to go in and see you with tubes and drains and lines and what out of your neck and breathing tube and all of that, that um you recovered really well from that.
• 13:41
  SPEAKER_02: Cam recovered really well from her donor operation.
• 13:45
  SPEAKER_02: And then you went on to be healthy, but then the kidney started.
• 13:52
  SPEAKER_00: Yeah.
• 13:52
  SPEAKER_00: I mean, I was double-listed.
• 13:54
  SPEAKER_00: I was listed for both at the same time, but because Cam was ready to do that, we decided, like, and I remember having that conversation with the kidney transplant doctor, and just like, okay, so because a lot of times a lot of people, even without the polycystic kidney disease, the anti-rejection medication that you take sometimes is really hard on your kidneys.
• 14:16
  SPEAKER_00: So I was, you know, I said to him, so what happens if they tank right away?
• 14:20
  SPEAKER_00: And I said, Do I have to wait anytime after the liver transplant?
• 14:23
  SPEAKER_00: Like, how quickly could we do that?
• 14:24
  SPEAKER_00: And he said, No.
• 14:25
  SPEAKER_00: So I I was I felt confident enough that at least we could try that and maybe they would hold on for a while.
• 14:31
  SPEAKER_00: But I did get COVID about six weeks after my liver transplant.
• 14:35
  SPEAKER_00: And I just think that my body was like, can you know, and I also don't think that I think because I got my transplant so quickly, the radiation almost might have I I feel like everything was sort of delayed, and I had some really delayed reactions to a lot of different things.
• 14:50
  SPEAKER_00: Um, and so I just got to experience all of that at once.
• 14:53
  SPEAKER_00: But then yeah, so within a few, probably six or seven months, I we knew I needed to go and get my and I needed another kidney.
• 15:01
  SPEAKER_00: I've you know, so I have three kidneys now, so I'm very special.
• 15:04
  SPEAKER_00: They didn't take my other two out.
• 15:06
  SPEAKER_02: Oh, and and so you recovered even quicker from the kidney transplant compared to the liver.
• 15:10
  SPEAKER_02: Yes.
• 15:11
  SPEAKER_02: And then you started rebuilding your life.
• 15:13
  SPEAKER_02: Yes.
• 15:13
  SPEAKER_02: And and so before we get into that phase, um when I met you, you know, you you have family members who have polycystic kidney disease, and you've seen them go through the things that can happen in that condition.
• 15:29
  SPEAKER_02: Yeah.
• 15:29
  SPEAKER_02: Um tell me a little bit about how that uh has shaped your mindset.
• 15:34
  SPEAKER_02: Like how did you feel about uh having this condition and what uh might happen to you and how you lived and had relationships and 32 people who loved you enough to offer right with with all of that uh that you've seen in your other family members?
• 15:54
  SPEAKER_00: I think I mean it really it really affected me because I was 13 when my grandmother died.
• 15:59
  SPEAKER_00: And when she died, I I know much more now, but she I think she definitely had polycystic liver because I remember one of the last times that I saw her, she looked pregnant, but she got too sick to be able to do a kidney transplant.
• 16:14
  SPEAKER_00: But so she, you know, and that was in 1983.
• 16:17
  SPEAKER_00: So I don't even know what the technology really was like then.
• 16:19
  SPEAKER_00: I mean, back then a kidney transplant was scary.
• 16:22
  SPEAKER_00: So I watched her die, and then 10 years later, my own mother died from a brain aneurysm, which apparently I think 10% of polycystic kidney patients have them, which, as we know, I have one of those too, but not one that will could ever take me out like it did my mom.
• 16:40
  SPEAKER_00: That's the only way I can say it.
• 16:41
  SPEAKER_00: You also got to be that person that I called when I found that out that day.
• 16:44
  SPEAKER_00: Right.
• 16:45
  SPEAKER_02: That's another interesting healthcare story.
• 16:46
  SPEAKER_02: So you had this the brain scan done, and the results popped into your portal.
• 16:52
  SPEAKER_00: I went to go get automatically I went to go get, I had to get a chest x-ray as like one of the last things that I was doing.
• 16:57
  SPEAKER_00: And I said, Do you have the results from that brain aneurysm scan or the the scan, you know, uh for my brain?
• 17:03
  SPEAKER_00: And they handed me a sheet of paper as I was sitting there about to go get my chest x-ray, and all I could see on there was brain aneurysm.
• 17:11
  SPEAKER_00: And as I recall, this was a Friday afternoon.
• 17:13
  SPEAKER_02: It was a Friday afternoon at like five o'clock in the afternoon.
• 17:16
  SPEAKER_02: So everyone's office is closed.
• 17:18
  SPEAKER_02: And is I didn't recall that you had gotten the piece of paper because we do see this all the time.
• 17:24
  SPEAKER_02: Now there were laws put into place that require that results are immediately released to patients.
• 17:30
  SPEAKER_02: And then you get and invariably, I have to guess that 75% of results come in on Friday afternoons.
• 17:35
  SPEAKER_02: I don't know.
• 17:36
  SPEAKER_02: They're just because then the patients are scrambling, trying to make meaning of those results.
• 17:41
  SPEAKER_02: They're scared, they're uncertain, and um, and that's just a horrible place to be in.
• 17:46
  SPEAKER_02: It's awful.
• 17:47
  SPEAKER_02: But you had my cell phone and I I was driving on Balcones.
• 17:50
  SPEAKER_02: I remember exactly when you called me, and I was like, so I was more upset about that, I think, than anything.
• 17:56
  SPEAKER_00: Because that's how your mother it's how she, I mean, and in front of me, I was with her when it happened.
• 18:00
  SPEAKER_00: So yeah, and so I believe I connected you with a neurosurgeon.
• 18:04
  SPEAKER_00: You called him right away, and you called me back and said, Listen, you it's it's he you're going to be okay where it is, it's really small and where it is.
• 18:13
  SPEAKER_00: And I was honestly, like, I don't think I ever really thought about it after that because he prom, you know, he explained it to me and I said, Okay.
• 18:19
  SPEAKER_00: But I will say, again, because I deal with everything with laughter, when I feel like Tom need my husband needs to give me a break, I am like, I have had two organ transplants and breast cancer.
• 18:29
  SPEAKER_00: I have ADHD and anxiety, and I have a brain aneurysm.
• 18:33
  SPEAKER_00: So you need to cut me some slack.
• 18:35
  SPEAKER_02: Back off.
• 18:36
  SPEAKER_00: And he just looks at me like, okay.
• 18:39
  SPEAKER_02: Yeah, I mean, how can you do it?
• 18:40
  SPEAKER_00: I'm like, who can say they have all of those things?
• 18:44
  SPEAKER_02: And so, so back to you know, your family's experience and how that affected you.
• 18:49
  SPEAKER_02: I just I remember you talking about how you lived with tons of anxiety because of your experience.
• 18:54
  SPEAKER_00: Yeah, so watching my own mother at 23, I mean, she had this brain aneurysm and it she collapsed in front of me, and she was kept alive for two days until they knew that she was she was brain dead and they took her off life support.
• 19:06
  SPEAKER_00: I was not there.
• 19:07
  SPEAKER_00: My father was with her and my grandfather, and it was it was awful.
• 19:11
  SPEAKER_00: And I just remember, I just it that and then a few other things that had happened to me in my early 20s just triggered, it was awful.
• 19:19
  SPEAKER_00: I mean, I didn't get on a I went into almost OCD mode where um I felt like I could control everything if I didn't get on a highway.
• 19:28
  SPEAKER_00: And I got in a car, we were in a car accident also, but it was like for five years I didn't fly.
• 19:35
  SPEAKER_00: I I had to control every little bit of everything in my life, thinking in my brain that this was like making me feel better.
• 19:43
  SPEAKER_00: And so I that was when I started going to therapy, which whatever camera, go to therapy, everyone.
• 19:50
  SPEAKER_00: Therapy is awesome.
• 19:51
  SPEAKER_00: We go, you take you take Advil, you take aspirin for a headache, like there should be no stigma around therapy.
• 19:58
  SPEAKER_00: But I really learned a lot about myself and I got help.
• 20:01
  SPEAKER_00: I went on at that point, only for a year, I think I did some, you know, anxiety stuff to help me deal with things because I don't know why.
• 20:08
  SPEAKER_00: I felt like if I had the coffee cups in order in a way on a shelf and use them in a certain way, somehow that was going to make my life like be safer.
• 20:17
  SPEAKER_00: I don't know.
• 20:18
  SPEAKER_00: It was, it was really, I really, really struggled.
• 20:20
  SPEAKER_00: But then I also had things where I had, so my first child, I was 29, but I had these thoughts in my brain that I, for some reason, I wasn't going to live past 40 because I knew my aunt and uncle had had kidney transplants.
• 20:34
  SPEAKER_00: And I just, I don't know.
• 20:36
  SPEAKER_00: I I to have polycystic, because that was when I found out that I had polycystic kidney disease.
• 20:41
  SPEAKER_00: I didn't want to know.
• 20:42
  SPEAKER_00: I went into the emergency room one time, I think I was 25, and they it was this, I know it was before HIPAA case.
• 20:50
  SPEAKER_00: So I don't know what the year is that HIPAA started, but it was before HIPAA because the tech that was doing the ultrasound to see what was going on, I said, Can you just tell me if there's cysts on my on my kidneys?
• 21:01
  SPEAKER_00: And they were able to.
• 21:02
  SPEAKER_00: And they said, Yeah.
• 21:04
  SPEAKER_00: So I that's how I found out that I, because I didn't want to know, and my mother didn't want to know either.
• 21:09
  SPEAKER_00: She didn't know.
• 21:10
  SPEAKER_00: And my dad had them do an ultrasound while she was kept being kept alive.
• 21:14
  SPEAKER_00: Um, but that was when I found out, and so I just started having these weird, you know, thoughts in my brain that I'm not going, because I didn't understand what getting a kidney transplant meant.
• 21:24
  SPEAKER_00: I just knew that it was scary.
• 21:25
  SPEAKER_00: I didn't know how it all worked.
• 21:27
  SPEAKER_00: So I lived my life, I mean a really long time, just being afraid of dying and having anxiety and a lot of anxiety.
• 21:36
  SPEAKER_02: And how how did you feel how much joy were you cultivating in that time?
• 21:43
  SPEAKER_02: Like, did you because I've just always known you as such a joyful person.
• 21:47
  SPEAKER_00: I think that I still was, but I just have I I worry, I worried about I worried about worry was such a big thing in my life for so long.
• 21:56
  SPEAKER_00: And because you just have this dark cloud hanging over.
• 22:00
  SPEAKER_00: Over you because some people can live their whole life with polycystic kidney disease.
• 22:04
  SPEAKER_00: And that's it.
• 22:06
  SPEAKER_00: You know, I think my great-great-grandmother, my great-grandmother, great one of them did until she in her 80s.
• 22:12
  SPEAKER_00: But then there's this other part where you're like, you don't know.
• 22:15
  SPEAKER_00: And so, you know, when I started going to see a nephrologist, um, I lived my life every year being terrified of seeing those, you know, my labs to look and see what my creatinine was, what's my, you know, EDFGR, like what are those numbers?
• 22:31
  SPEAKER_00: I live my life, and so I would worry, I would stress, I would get them done, and then I would see they were okay.
• 22:37
  SPEAKER_00: And then I'd be like, okay, not this year.
• 22:40
  SPEAKER_00: So it just was, it was really hard.
• 22:43
  SPEAKER_00: I mean, I all and especially once I had kids, all I ever wanted to do, and I I mean, I do think that I'm a lot of the same, but my brain is a lot in a much better place.
• 22:52
  SPEAKER_00: Like my brain wouldn't stop all the time, just worrying about everything.
• 22:56
  SPEAKER_00: You know, my husband needed to at the time, you know, call me, let me know that he was leaving work because I was afraid if I didn't hear from him.
• 23:04
  SPEAKER_00: It just I catastrophe, I learned about this, I was I catastrophized everything.
• 23:09
  SPEAKER_00: It wasn't just he was late or was took went on a longer bike ride, he's dead in a ditch.
• 23:15
  SPEAKER_00: Like that.
• 23:17
  SPEAKER_00: I mean, you know, your brain is it's amazing what your brain can do.
• 23:21
  SPEAKER_00: So I lived my life a lot of that.
• 23:23
  SPEAKER_00: Yeah.
• 23:24
  SPEAKER_02: And what were some of the things that you were able to do to overcome that?
• 23:27
  SPEAKER_02: To to, I mean, I'm sure it never goes away.
• 23:30
  SPEAKER_02: Yeah.
• 23:30
  SPEAKER_02: But to have that those fears and those compulsions not have such a grip on your quality of life.
• 23:37
  SPEAKER_00: I think honestly, being as healthy as I could be.
• 23:41
  SPEAKER_00: So I've, I mean, I've grew up being an athlete, and I know for me, running, I used to run and then walking, getting outside.
• 23:49
  SPEAKER_00: I mean, I nothing makes me happier than getting out and walking.
• 23:52
  SPEAKER_00: And when we lived in Colorado, you know, wildflower time, like right now.
• 23:55
  SPEAKER_00: I just getting outside and having that time, that peace, and doing those things and making sure I would do those things for me and eating well.
• 24:03
  SPEAKER_00: I mean, it all really basic things, but like eating well and drinking water, and as I taught my kids, you try to eat every color every day, those kinds of things.
• 24:13
  SPEAKER_00: And just those were those were the things that I did have control over.
• 24:18
  SPEAKER_02: Yeah.
• 24:18
  SPEAKER_02: So I and those are very evidence-based strategies.
• 24:21
  SPEAKER_02: Yeah, right.
• 24:22
  SPEAKER_02: And in addition to it, sounds like you had good personal relationships, you had a community, yes.
• 24:27
  SPEAKER_02: You had your people, yes.
• 24:28
  SPEAKER_02: So exercise, movement, nutrition, outdoor time.
• 24:32
  SPEAKER_02: And you seem like one of the most grateful people.
• 24:34
  SPEAKER_02: I have to imagine gratitude was in there somewhere too.
• 24:37
  SPEAKER_00: It is, and I think, and I like I uh it might make me cry.
• 24:41
  SPEAKER_00: I think the important thing about gratitude is also letting people is letting is truly telling people how much you appreciate them.
• 24:49
  SPEAKER_00: I do that all the time.
• 24:51
  SPEAKER_00: Um, you know, I think that's really important, no matter who they are.
• 24:54
  SPEAKER_00: For example, when I was I was a public school teacher forever, and the people that I was most grateful to were the custodians.
• 25:01
  SPEAKER_00: And I remember one time I had taught middle school at in Albuquerque for I'd been there quite a while, and I gave one of the custodians, I gave her$50 for Christ at Christmas time.
• 25:12
  SPEAKER_00: And she was so grateful, and she said, No one's ever given me anything here.
• 25:17
  SPEAKER_00: And I was shocked, like what, you know, and I mean it's how my mother raised me to be, and it's I love seeing how my kids do those things, but I just think it's really important.
• 25:28
  SPEAKER_00: I don't care, just someone being a custodian.
• 25:30
  SPEAKER_00: We're all, we are all people, and I I've always treated everyone that way.
• 25:36
  SPEAKER_00: And I think especially, you know, it translates really well into the medical world that I've been in because my father was a vascular surgeon and he's difficult.
• 25:46
  SPEAKER_00: I love him so much.
• 25:48
  SPEAKER_00: He's gonna probably, he's gonna hear this, but he he was he would tell, you know, he's he's not the easiest and he's gotten a lot better.
• 25:55
  SPEAKER_00: He's chilled out after he had like two more kids after my brother and I.
• 25:58
  SPEAKER_00: But, you know, I would always know that the nurse, like I could see, he would have me do rounds.
• 26:05
  SPEAKER_00: And I just knew the nurses were the ones, they're the real ones, you know.
• 26:10
  SPEAKER_00: They're the ones that you have to be the nicest to.
• 26:12
  SPEAKER_00: They're the ones who are with me, you know, if I'm in the hospital, they're with me on their 12-hour shift, you know.
• 26:18
  SPEAKER_00: They're the ones I'm super appreciative, no matter how, you know, and even when I'm I've been here, you know, the woman who comes in once a day and cleans the room, I'm just so grateful to her and tell her and thank her and ask her, you know, if I can, I you know, I try and I just think that's really important.
• 26:34
  SPEAKER_00: Yeah.
• 26:34
  SPEAKER_00: So I I've always been that way.
• 26:37
  SPEAKER_02: Gratitude is an amazing practice because it helps you and it helps the world.
• 26:44
  SPEAKER_02: It makes the space that you occupy better because the people are uh feel seen and heard and and valued, and that's gonna make anyone step up and want to pay that forward.
• 26:58
  SPEAKER_02: Yeah, want to do what they're doing a little better.
• 27:01
  SPEAKER_00: I remember one of the times, one of the times that I stayed here.
• 27:04
  SPEAKER_00: I don't know, I've been here.
• 27:05
  SPEAKER_00: I'm I'm saying here, but it's the hospital.
• 27:07
  SPEAKER_00: Yeah, the hospital.
• 27:09
  SPEAKER_00: Um I mean, I remember one day I was well enough.
• 27:12
  SPEAKER_00: It was when I was here after before my liver transplant, and I wanted to go walk.
• 27:17
  SPEAKER_00: I always make myself, and which also walking is really good for you when you're doing all of these things when you're if you have issues with your bodies.
• 27:23
  SPEAKER_00: Um, but I asked my nurse, I said, Do you want something?
• 27:25
  SPEAKER_00: Like, do you want a Starbucks?
• 27:26
  SPEAKER_00: Like, I'm gonna go downstairs and get it and so I just don't even like that's just and but to them that they're they always are like, What?
• 27:33
  SPEAKER_00: You're asking me if I want to, yeah, I'm gonna go get one.
• 27:37
  SPEAKER_00: You're taking care of me, it's the least I can do.
• 27:40
  SPEAKER_00: So I just yeah, I treat your nurses the best.
• 27:43
  SPEAKER_02: Yeah, and the medical assistants, everyone, I mean everyone.
• 27:48
  SPEAKER_02: I I couldn't agree more with that, and I do see your self-advocacy is unique, I think, because when you're calling or you're questioning, or you're asking for more information or an explanation, it never feels like I'm being attacked, or when I have seen you do this in other contexts.
• 28:12
  SPEAKER_02: You're not mean, you're not uh making people feel like they've done something wrong.
• 28:19
  SPEAKER_02: You're just like help me solve this problem, whether it's help me learn more information, help me get this thing scheduled.
• 28:27
  SPEAKER_02: And that's really what I see so uniquely in you is that your advocacy is there's a kindness to it, like you're fierce.
• 28:36
  SPEAKER_02: I mean, you're not a whim, but it's not mean.
• 28:41
  SPEAKER_02: And I do believe that you create your own reality in this, you and not like a fantasy reality.
• 28:48
  SPEAKER_02: I mean, like you, your health is in part because of how you show up and that people want to help you and want to do good things for you.
• 28:57
  SPEAKER_00: Yeah.
• 28:57
  SPEAKER_00: Well, and I always, I mean, here's an example right now.
• 29:00
  SPEAKER_00: I'm currently in the process of it's been a month of trying to get an iron infusion.
• 29:05
  SPEAKER_00: I've been anemic forever, and I think they thought that my it when I got a new kidney, maybe that would help.
• 29:10
  SPEAKER_00: But again, I've had to advocate for this because I still have some weird things going on.
• 29:15
  SPEAKER_00: And if I just let it go, I would never see anyone.
• 29:17
  SPEAKER_00: But I have a couple new doctors that I'm gonna be seeing, a neurologist and someone in the uh post-COVID clinic.
• 29:23
  SPEAKER_00: But again, I have I my best piece of information besides advocating for yourself is study, learn.
• 29:31
  SPEAKER_00: What I love about you is that you're you don't get defensive or you know, you don't get upset with me when I, if I've said, okay, I read my labs and this is a little bit different.
• 29:41
  SPEAKER_00: When I talk to my trans, my transplant team knows me now well enough to know, but I think it's really important for you to know.
• 29:47
  SPEAKER_00: I mean, because you do get it before your doctors.
• 29:49
  SPEAKER_00: And it's a you can take all of your personal information off of that, and I sometimes will.
• 29:55
  SPEAKER_00: I'll put I'll put it into I use perplexity, it's what the university uses.
• 30:00
  SPEAKER_00: I'll take on my own, you know, and I can have it's a scholarly AI thing, and I love it because it helps me sometimes because I do have to be the one.
• 30:09
  SPEAKER_00: I mean, I'm I'm far enough out now where I see them every six months.
• 30:12
  SPEAKER_00: So I do question things, but anyway, the iron infusion, I finally said, I need this, this is ridiculous.
• 30:17
  SPEAKER_00: Like, look at my numbers.
• 30:19
  SPEAKER_00: And it's taken a month, and I still haven't gotten it because of the back and forth with getting, you know, a blank form and not the right medicine, and then this and this, and and it's and I've had to call.
• 30:29
  SPEAKER_00: I I can't tell you how many times.
• 30:32
  SPEAKER_00: And it's still like I still haven't gotten this infusion.
• 30:35
  SPEAKER_00: And a lot of people I think would just give up.
• 30:37
  SPEAKER_00: But I tell them every time I talk to someone, I'm like, this is really I say, this is I said, I'm super frustrated.
• 30:42
  SPEAKER_00: And I say, not with you.
• 30:44
  SPEAKER_00: I'm not frustrated with you, just this process.
• 30:47
  SPEAKER_00: So I really I think you can be, you can be angry, you can be frustrated, but you have to let the person know it's not their fault, the person who's answering the phone, trying to just schedule something for you.
• 30:58
  SPEAKER_00: It doesn't do anything for you.
• 30:59
  SPEAKER_00: And when I'm kind, I mean, they it like you said, and I'm not doing it just to get them to help, uh, but they're they appreciate that, you know, they know they're like, I'm sorry, this has been, I said, it's been a month and I still haven't gotten this done.
• 31:13
  SPEAKER_00: I just I don't know, there's no, it won't get you anywhere.
• 31:16
  SPEAKER_00: And it's also not good for you to be angry, like really, it actually is not good physically good for you to to sit in that and be mad.
• 31:24
  SPEAKER_00: So I couldn't agree more.
• 31:26
  SPEAKER_02: Well, and then let's connect the advocacy um to you know the anxiety where you have tried many, you know, you went therapy, you did these interventions and habits, I would say, of being outside and exercise and um and nutrition, and then you still weren't able to get to a quality of life that was what you wanted or needed.
• 31:50
  SPEAKER_00: And so what'd you do then?
• 31:52
  SPEAKER_00: I think after my second transplant, everything kind of really hit me, and that was two years ago.
• 31:59
  SPEAKER_00: Uh and I I don't know if it's a common, it could be a who knows at this point.
• 32:03
  SPEAKER_00: I mean, my medication, my age, post-menopausal, like you name it.
• 32:07
  SPEAKER_00: I've been through all of it, so I don't think anyone could pimp put it.
• 32:10
  SPEAKER_00: But it just, and it I get there is research that has shown that if you especially there are a lot of women who are late diagnosed ADHD.
• 32:20
  SPEAKER_00: And I I knew I had general anxiety because I've had a prescription for, you know, as needed stuff if I ever need, because I do get pan, I mean, listen, I had a panic attack the morning of my liver transplant surgery.
• 32:31
  SPEAKER_00: And they called cardiac, like they had the like the cardiac, card cardiology people in, and I'm like, it's anxiety.
• 32:38
  SPEAKER_00: Like, please know that that you cannot cancel this.
• 32:40
  SPEAKER_00: So I have to take, like, I will have to I take a prescribed medication in the mornings before my things, and they're always like, You're the best patient ever.
• 32:48
  SPEAKER_00: I am medical chemistry.
• 32:49
  SPEAKER_00: I'm medicated.
• 32:50
  SPEAKER_00: No, but I just I was crying, I just could not after those transplants, it just all came to a head.
• 32:56
  SPEAKER_00: So two years ago, and I just looked at my husband because I felt like I was almost crying every day.
• 33:01
  SPEAKER_00: I just, it just everything felt like in my chest, like anxiety-wise.
• 33:07
  SPEAKER_00: And I I I went and, you know, I found a psychiatrist.
• 33:10
  SPEAKER_00: I had a therapist, but I went and talked with a psychiatrist and was officially diagnosed, you know, with ADHD and obviously my general anxiety.
• 33:19
  SPEAKER_00: And so I I didn't want to go on to um a stimulant medication asla.
• 33:24
  SPEAKER_00: I don't want that.
• 33:25
  SPEAKER_00: But the Stratera that I went on is an SRNI.
• 33:30
  SPEAKER_00: And so they told me that a lot of times one of the positive side effects is that it can help you with, it does help some people with anxiety.
• 33:36
  SPEAKER_00: And thankfully, I am one of those people because I honestly feel like it changed my life.
• 33:43
  SPEAKER_00: Uh I, of the little, you know, basic interactions you might have with someone where it might feel a little bit off.
• 33:50
  SPEAKER_00: I would, I would go home afterwards and think about this and be like just obsessed over.
• 33:55
  SPEAKER_00: Was that me?
• 33:56
  SPEAKER_00: Did I talk too much?
• 33:57
  SPEAKER_00: Did I say was that, you know, and now I don't have those those running thoughts in my brain anymore.
• 34:03
  SPEAKER_00: And I'm much more like this.
• 34:05
  SPEAKER_00: Yes.
• 34:06
  SPEAKER_00: Okay.
• 34:06
  SPEAKER_00: Yeah.
• 34:06
  SPEAKER_00: It really, really has helped me a lot.
• 34:09
  SPEAKER_00: And, you know, I think I, you know, I had to deal with another medical thing last fall.
• 34:15
  SPEAKER_00: And I think that being on this medication helped me sort of process all of that.
• 34:20
  SPEAKER_00: Because it was, it was a lot and very unexpected.
• 34:24
  SPEAKER_00: So yeah, it's really, it's helped me.
• 34:26
  SPEAKER_00: I and I can I can talk about it in my brain and be like, I that there was that interaction, you know, but I can stop myself and say, This was not you.
• 34:35
  SPEAKER_00: It is okay, you know, you can move on, let it go.
• 34:37
  SPEAKER_02: You're reframing your narrative, which is like how you make meaning of what happened.
• 34:42
  SPEAKER_02: Yes.
• 34:42
  SPEAKER_02: You can instead of saying, Oh my gosh, I did this and I'm a terrible person, you can reframe and say, that's their stuff.
• 34:49
  SPEAKER_00: Yeah.
• 34:50
  SPEAKER_00: Yeah.
• 34:50
  SPEAKER_00: And I just am like, I didn't, you didn't do anything wrong.
• 34:53
  SPEAKER_00: Take a deep breath.
• 34:54
  SPEAKER_00: Like, I mean, I talk to myself a lot in my brain.
• 34:57
  SPEAKER_00: Well, we all do.
• 34:58
  SPEAKER_02: And I think being aware of that is really helpful and empowering when you realize that you can direct that narrative.
• 35:02
  SPEAKER_02: Yeah.
• 35:03
  SPEAKER_02: You can you can redirect that narrative.
• 35:05
  SPEAKER_00: Yeah.
• 35:06
  SPEAKER_00: And I just feel like it's, you know, it was it's been a very weird few years because I spent so much of the time of my life worried worrying about dying.
• 35:14
  SPEAKER_00: And not to say, like, spoiler alert, we're we are gonna die, everyone, I'm sorry.
• 35:19
  SPEAKER_00: But not in the way that, you know, I thought that that was all going to happen.
• 35:23
  SPEAKER_00: So it was really strange to kind of again totally like mind shift, like change, like have all of that happen where it's like, wait, I'm not being scared about going into kidney or liver, well, I didn't know about the liver failure anymore.
• 35:37
  SPEAKER_00: And now it's, you know, I I'm I feel the best that I have felt in forever.
• 35:42
  SPEAKER_00: Although it does scare me when I have to still go get like labs or get my mammograms, which I just had one recently again, but you know, it's I don't know.
• 35:50
  SPEAKER_00: I just feel like I have a lot more control over how I handle everything, which is really nice.
• 35:56
  SPEAKER_00: That's beautiful.
• 35:57
  SPEAKER_02: Yeah, that's beautiful.
• 35:58
  SPEAKER_02: So in this spirit of just cut it out, what is what what kinds of things have you cut out after realizing in the context of all these health challenges, they just aren't important or don't matter.
• 36:10
  SPEAKER_00: I think I I think again for me, I think the medication has actually helped me with this.
• 36:15
  SPEAKER_00: Being able to, you know, it's really hard when you have anxiety and you worry about everything, that's all about the future.
• 36:24
  SPEAKER_00: And I think it's it's so easy to say, oh, you need to just live in the moment, you know, be present.
• 36:30
  SPEAKER_00: But I do think that that's probably the thing that I am able to do more than ever in my life.
• 36:36
  SPEAKER_00: And for example, we joined, you know, a golf club last fall, which you've heard a lot about, and I play a lot of golf.
• 36:42
  SPEAKER_00: And we've actually, since the first time we've moved to Austin, I've met friends, we have a whole group of friends, and I like I am truly grateful it's gonna make me cry because even I could have a bad day, I could have bad shots.
• 36:56
  SPEAKER_00: I don't care because I look out here and I'm like, I am out here playing golf.
• 37:00
  SPEAKER_00: I'm so I'm I I am alive.
• 37:02
  SPEAKER_00: I'm on this side of the ground, and I tell everyone around me, I even like on Tom, I think it was my no, it was his birthday.
• 37:08
  SPEAKER_00: I don't know, he was cranky, and I'm like, I'm alive, and I'm here playing golf with you.
• 37:12
  SPEAKER_00: You need to be in a good mood.
• 37:14
  SPEAKER_00: Like, you should just be happy that I'm alive.
• 37:16
  SPEAKER_00: And he's like, that's really morbid.
• 37:19
  SPEAKER_00: But I think, you know, honestly, cutting out a lot of just what isn't out of what is out of your control, and which is hard because again, when you get cancer, you're in liver failure, a lot of those things are out of your control.
• 37:34
  SPEAKER_00: But I think that's why being an advocate for myself, those are the things that I do have control over, you know, taking the time to read things and researching and studying and learning about as much as I can what's going on with me, and then um asking the right questions.
• 37:51
  SPEAKER_00: And I think that's also something that I always tell people like you can't feel, don't ever, if you have questions you need to ask, it's not, you can't, even if there's pushback from your doctor, then that might not be your doctor for you because a doctor should appreciate that you have questions you want to learn more about, what's going on with the process, because it's scary.
• 38:11
  SPEAKER_00: Also, write everything down.
• 38:13
  SPEAKER_00: Write down your questions, keeping them.
• 38:15
  SPEAKER_02: Write down the answers, absolutely.
• 38:17
  SPEAKER_00: Yeah, all of those things.
• 38:18
  SPEAKER_00: So I think, you know, it's it's I don't know, it seems so basic, but you know, just trying to live in the moment and and not worry about everything and try enjoy, be grateful, like whole gratitude.
• 38:31
  SPEAKER_00: I mean, I've done gratitude journals, you know, it's always like at the end of the day, three good things, you know, right?
• 38:36
  SPEAKER_00: What are the good things that have happened today?
• 38:39
  SPEAKER_00: And I know to some people that's like, oh my gosh, that's ridiculous.
• 38:42
  SPEAKER_00: But it it's it makes a difference when you can look at positive things versus the bad, you know, the negative.
• 38:48
  SPEAKER_02: 100%.
• 38:48
  SPEAKER_02: And it and it it almost becomes cliche because so many people say it.
• 38:52
  SPEAKER_02: But another narrative for that is so many people say it because it's real, because it actually does make a difference.
• 38:57
  SPEAKER_02: Yeah.
• 38:58
  SPEAKER_02: And I think about it as, you know, in every day there are bad things that happen and there's good things that happen, and you can choose to pay attention to the bad things because I think we're naturally drawn to threats and problems that probably helped us survive in an earlier era.
• 39:15
  SPEAKER_02: Um, but that doesn't mean the good things aren't equally true.
• 39:18
  SPEAKER_02: They also happened.
• 39:20
  SPEAKER_02: And you can choose to spend your time thinking about them if if that's the choice you want to make.
• 39:26
  SPEAKER_00: Yeah.
• 39:26
  SPEAKER_00: And I think that's why like golf is such a good analogy for this because when I play, I could have a couple bad shots, but I don't even care about them because then I'll I want to remember the really good chip-in or whatever.
• 39:37
  SPEAKER_00: But my husband needs a little work on this, which I'm trying to do for him because he gets so stuck on that bad shot.
• 39:43
  SPEAKER_00: And I'm like, dude, we don't get we don't get paid to do this.
• 39:46
  SPEAKER_00: Enjoy it.
• 39:47
  SPEAKER_00: We're here.
• 39:48
  SPEAKER_00: You know, think of don't think about that one, think about that other one.
• 39:51
  SPEAKER_00: And it's it's but it's but that's if you're able to do that with life, it's just a total metaphor for us.
• 39:57
  SPEAKER_00: Yeah, it really absolutely is.
• 39:58
  SPEAKER_00: It truly is.
• 39:59
  SPEAKER_00: So the one thing that I want to also say is that this is a reason why I'm here talking with you.
• 40:04
  SPEAKER_00: I did also, I don't know if I shared it with you, a really cool podcast called Um The Diary of a Kidney Warrior.
• 40:09
  SPEAKER_00: It's not about breast cancer, but um, I I again I try and talk about, oh yeah, and then I have the magazine here that is really cool.
• 40:18
  SPEAKER_00: I this is I've been an educator my whole life, so I want to talk about all of this as much as possible because there are people who don't even know that your liver can regenerate.
• 40:27
  SPEAKER_00: I mean that alone.
• 40:28
  SPEAKER_00: So I think talk being able to share this with people so that I think my goal is always that maybe one day someone will think about my story and it will, you know, encourage them and give them hope.
• 40:43
  SPEAKER_00: And so this is what's really interesting.
• 40:45
  SPEAKER_00: I'm gonna hold this up because this um so this magazine is called Bonus Days.
• 40:52
  SPEAKER_00: And I'm gonna hold it up here.
• 40:55
  SPEAKER_00: Um I have become really good friends with Alison Conklin, who is the the the kind of the brain behind this whole magazine.
• 41:04
  SPEAKER_00: This magazine is for, it says pages for the resilient.
• 41:07
  SPEAKER_00: A lot of the stories are transplant patients, but it's really for anyone who has any sort of chronic illness, whether you're the caretaker or um you're going through it yourself.
• 41:18
  SPEAKER_00: And it's beautifully done.
• 41:20
  SPEAKER_00: She's a professional photographer, and I was asked to actually be I'm one of the feature stories this time, and it was really cool.
• 41:28
  SPEAKER_00: She came to Austin, and we got to go and um play around and go and do really fun stuff.
• 41:34
  SPEAKER_00: But the cool thing about this was my story that was written was written by a writer, and uh she sent me a message the other day, and I'm gonna read this because this is why I do, this is why I do what I do sitting here and you know, appreciating the opportunity to talk to you and doing that.
• 41:52
  SPEAKER_00: So um, without going into all of the details about this, she had a stroke and she was in the hospital, and then one thing after another, they found bloodcots and all of these other things, and she was, you know, she she said, I broke down in the ICU crying and saying, I don't know how much more of this I can take.
• 42:09
  SPEAKER_00: I'm trying to be brave.
• 42:10
  SPEAKER_00: I told the nurse, but I just can't anymore.
• 42:12
  SPEAKER_00: Then at one point I thought of you.
• 42:15
  SPEAKER_00: I thought of all you've been through, much more than me, and I thought, if Jamie could survive all she went through, I can too.
• 42:21
  SPEAKER_00: I'm very blessed that the stroke left no residual effects, and she just was like, but now, but thank you for your story with me and leaving me inspired at the moment.
• 42:29
  SPEAKER_00: I really needed inspiration.
• 42:31
  SPEAKER_00: And I was just like, you know, I mean, it broke me a little bit.
• 42:36
  SPEAKER_00: I'm glad that she's okay, but that's why I don't a lot of people don't, I think it's hard to talk about all of these things.
• 42:44
  SPEAKER_00: I mean, I was really sick and it was really scary, but I think the more that people can look at someone like me sitting here, knowing that, like, okay, it gives you that strength to to persevere and do everything that you can to get up and go and you know, I know I didn't do chemo, but like go and do those things and it's hard, and um, but you just have to do it so that you have the opportunity to maybe then go out and play golf and do the things that I'm able to do right now.
• 43:13
  SPEAKER_02: I talk about, you know, it people fight against cancer.
• 43:17
  SPEAKER_02: They talk about that my battle with cancer, and there's and that's real, but I think it's also important to keep in mind what are you fighting for?
• 43:23
  SPEAKER_02: Yeah, what is it that is important to you about you know living a good life that you are wanting to hold on to and the cancer is you know presenting an obstacle to that.
• 43:34
  SPEAKER_02: But people who spend all their time thinking about the cancer have trouble sometimes getting back to that that joyful, happy living in the moment, you know, not not every moment, but more moments, as many moments as they can.
• 43:49
  SPEAKER_02: Yeah.
• 43:49
  SPEAKER_00: It's hard.
• 43:50
  SPEAKER_00: I mean, and I had listen, I have had I had many days for uh yeah, I don't even I don't know, I don't even know how I did all that I've done.
• 43:58
  SPEAKER_00: And people say that to me all the time.
• 44:00
  SPEAKER_00: How you did it.
• 44:00
  SPEAKER_00: I'm kind of like, what was my choice?
• 44:02
  SPEAKER_00: You know, when people say you're so brave and you're so strong, and I and I appreciate that.
• 44:07
  SPEAKER_00: But then again, that's my thought is I wanted to be healthy, so I did everything.
• 44:13
  SPEAKER_00: I did everything that I could.
• 44:14
  SPEAKER_00: So and continue to do that.
• 44:16
  SPEAKER_00: But it what makes me, you know, the what makes me laugh is the title of the podcast is Just Cut It Out.
• 44:22
  SPEAKER_00: And I think about all the things that I've had cut out in the last few years, including, as I told you, um, six inches of my colon that just got cut out in December.
• 44:31
  SPEAKER_00: So I got got a few more things cut out recently, and now it all that needs to be cut out.
• 44:37
  SPEAKER_00: I no more cutting out.
• 44:38
  SPEAKER_00: No more cutting out of me.
• 44:40
  SPEAKER_00: All right.
• 44:41
  SPEAKER_00: Well, would you like to ask me a question?
• 44:44
  SPEAKER_00: Um, yeah, I actually thought of one.
• 44:46
  SPEAKER_00: If you so I want to know, and I don't because of talking to another doctor who said that they what what is the other uh doctor?
• 44:57
  SPEAKER_00: What what what is it that you look at like what other people doctors do, and you're like, absolutely not.
• 45:02
  SPEAKER_00: I could never do that.
• 45:04
  SPEAKER_00: Is there another like uh what is the word I'm thinking of?
• 45:07
  SPEAKER_00: Like a specialty?
• 45:08
  SPEAKER_00: Specialty.
• 45:09
  SPEAKER_00: I'm tired.
• 45:10
  SPEAKER_00: Specialty.
• 45:11
  SPEAKER_00: Like, is there one?
• 45:12
  SPEAKER_00: I mean, I would think what what what Dr.
• 45:14
  SPEAKER_02: Sokis does, but oh uh colorectal surgery.
• 45:17
  SPEAKER_02: I actually love colorectal surgery.
• 45:20
  SPEAKER_02: I got into surgery because uh of my general surgery rotation as a medical student, and the the guts and the bowels were like my first love.
• 45:28
  SPEAKER_00: Oh my gosh.
• 45:29
  SPEAKER_02: And uh, for me, it's it's eyeballs.
• 45:33
  SPEAKER_01: Really?
• 45:33
  SPEAKER_02: I don't think I could operate on eyeballs.
• 45:35
  SPEAKER_02: I've I couldn't do that again.
• 45:37
  SPEAKER_02: I yes.
• 45:38
  SPEAKER_02: Um, that whenever I walk it, you know, sometimes you're walking through the operating room and you pop into a room because you're seeing, like, oh, do they have a I need a lead jacket, you know, because I'm gonna be using and then someone's doing an eyeball operation.
• 45:49
  SPEAKER_02: I'm like, I'm out of here.
• 45:51
  SPEAKER_02: I don't want any more of that.
• 45:53
  SPEAKER_02: Well, I have like every conversation with you totally thoroughly enjoyed hearing more about you, learning some new things I didn't know, sharing your story with the audience.
• 46:02
  SPEAKER_02: Um, we've talked about lumpectomy versus mastectomy, and we've talked about managing the anxiety that naturally comes with a chronic health condition and all of the ups and downs.
• 46:15
  SPEAKER_02: We've talked about self-advocacy, of showing up as someone who's educated on their condition and asking questions and working with healthcare providers to get things test schedules, scheduled, labs explained, infusions done, etc.
• 46:34
  SPEAKER_02: But really showing up with a gratitude to the people that are taking care of you and not just the ones at the top of the food chain, right?
• 46:41
  SPEAKER_02: But everyone plays a role in creating the health outcome that that you're looking for.
• 46:48
  SPEAKER_02: So um hope that some part of this episode is resonated with you that you're carrying forward one of these habits or mindsets and helping to create the life, the health outcome, um, the joy in your life that you're seeking.
• 47:06
  SPEAKER_02: Thank you very much.