Sept. 30, 2021

Day 1: How My Doctor Missed My Breast Cancer Symptoms

Day 1: How My Doctor Missed My Breast Cancer Symptoms

When she noticed her nipple felt different, Kristen's first thought was "what the F is this?" Her second thought was that her life was about to change. So she did what everyone does in this situation... she jumped out of the shower, went to Google, and diagnosed herself with a rare form of breast cancer called Paget’s Disease. But Google’s never right about these things, so a few days later when the radiologist suggested a biopsy for Paget’s, shit got real.

When Kristen noticed her right nipple felt different, her first thought was "what the F is this?" Her second thought was that her life was about to change.

So she did what everyone does in this situation... she jumped out of the shower, went to Google, and diagnosed herself with a rare form of breast cancer called Paget’s Disease. But Google’s never right about these things, so a few days later when the radiologist suggested a biopsy for Paget’s, shit got real.

Overnight, life became a tightly-woven schedule of appointments wedged between work: a biopsy, an MRI, a colonoscopy, and a million different labs and scans leading up to the first chemo treatment.

As a single woman with limited resources, Kristen had no choice but to advocate for herself, quickly figuring out the magic words to use with her healthcare providers to move the process along faster and start treatment sooner.

In this episode recorded on her first day of chemo, Kristen tells us what’s happened so far, including why her mammogram didn’t catch the tumor, what made her cry and what made her throw up at the first chemo appointment, and how nearly taking her own life a year earlier prepared her to confront breast cancer with strength and courage instead of defeat.

From the awful moment in the shower through the last day of radiation and beyond — this is Kristen’s breast cancer story, told in real time.


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Meet Kristen’s doctors: surgical oncologist Dr. Louis Rivera,hematologist and oncologist Dr. Sonia Ali, plastic surgeon Dr. Salvatore Pacella, and radiation oncologists Dr. Anuradha Koka and Dr. Kenneth T. Shimizu.

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About Breast Cancer Stories

Breast Cancer Stories follows Kristen Vengler, a 56 year old single empty nester in San Diego, from her diagnosis of hormone positive breast cancer through chemotherapy, mastectomy & breast reconstruction, radiation, and whatever happens after that.

In 2020, Kristen moved from Austin to San Diego to be near family and start her life over after a life-shattering workplace trauma. A few months later she had that terrifying moment in the shower we all hope we never have.

From her breast cancer diagnosis, through chemotherapy, breast reconstruction, and radiation, we experience each new milestone as it happens. This podcast is about what happens when you have breast cancer, told in real time.

Support the show by sharing online, writing a review, or donating at

Host and Executive Producer: Eva Sheie
Co-Host: Kristen Vengler
Editor and Audio Engineer: Daniel Croeser
Theme Music: Them Highs and Lows, Bird of Figment
Production Assistant: Mary Ellen Clarkson
Cover Art Designer: Shawn Hiatt

Breast Cancer Stories is a production of The Axis.



Eva (00:08): This is the story of my friend, Kristen. Last year, Kristen left her home of 26 years in Austin, hoping for a fresh start in San Diego. And just a few months later, she had that terrifying moment in the shower, we all hope we never have. I'm Eva, and because Kristen and I are friends, on this podcast, we talk about things strangers might not be comfortable talking about. We're sharing Kristen's story because we want others confronting the challenge of breast cancer to have something to lean on. This is Breast Cancer Stories, a podcast about what happens when you have breast cancer told in real time.

Kristen (00:45): So I had been out of town on like a meditation retreat and I got home. It was like the Sunday before Thanksgiving and I was taking a shower and I noticed that like, my right nipple felt different than my left one when I washed it. And it felt different in that it was bigger. And it was also like more flush to the skin. And there was a little bit of an indentation down toward the bottom, like where the areola is,

Eva (01:12): What was your first thought?

Kristen (01:14): Me? I was like, I was like, what the fuck is this? and I looked at it and I was like, I mean, it was actually one of those few times in your life where you do a 180 and you realize right then your life probably changed. And so I looked at it and I was like, huh, it was kind of toward the bottom. So I took pictures so I could see and zoom in on exactly what it looked like. And then of course I went to the internet and what it said first was that it was likely something called"pa-jits" or Paget's disease. I don't know how they pronounce it. And that's actually a disease of the nipple that is usually there's some advanced cancer that's going on when that's there. And it's a tough one, it's a rare disease. And I was like, oh God, Kristen, no, you know, whatever. And so I hadn't established my primary care physicians or anything here, so, and I'm on the scripts HMO. So I had to do that. Mm-hmm so I got a zoom call with her and then she wanted me to come in and, and what really got people to get me in to see them is I would say, I can see and feel it and that they were like, oh, okay. This could be something.

Eva (02:26): When was your last mammogram?

Kristen (02:29): So this mammogram was like in November, I guess, November, December, and this year. And right before that, it was like 18 months before.

Eva (02:37): Oh, so not that long. Really?

Kristen (02:39): No. Uh, I was really good about having them done. And the thing was that when I did the mammogram this time, it caught it, but what's interesting is like, I have like dense breast tissue. So the biopsy on the lymph node isn't back yet. And that should be back in the next couple of days, but it's nowhere else in my breast. It's like a one inch round tumor that is right behind the nipple and areola. And so that skin tends to get hard at times too, you know, like when you're cold or like, whatever, it's very different tissue than like your regular, like breast skin. And so you couldn't see anything from the other mammograms. They were clear. When I actually had, I think the year before that I had an ultrasound too. Hmm. Because it was just dense breast tissue and that kind of thing.

Eva (03:27): So you were on top of it?

Kristen (03:29): Yeah, totally. On top of it. Yeah. I mean, again, I hadn't established all my stuff here since I moved 10 months before or 11 months before, but, and I knew I needed a mammogram and knew I needed a colonoscopy, too. Those were things I knew I needed. And I got all that stuff done with all of this. And then when I found out that I had breast cancer, I was like, you know what, let's just move it up and just be sure all that's clear too. So that was part of my week, last week. Like, , let's just start the day. Let's start, let's start it off Monday with a colonoscopy. Woo. And then it was all these tests and then my port placement and labs and just like, bam, bam, bam. But I'm so glad that as hard of week as it was and as emotional and like tiring that, like it wasn't like, "okay, let's do this bone scan and wait a week." It was like, fast and furious, but I got answers and we know what we're looking at. Mm-hmm . So I love the information piece, always. It makes me feel like I'm in control.

Eva (04:28): How much time went by between when you found out and when all of this process of being treated started?

Kristen (04:37): Just a little over a month. So I found it and it took about a week to get a zoom meeting with my primary care, another week or so to get in with her, for her to see me because it has to go through all these referral processes. Right. And so then she referred me for the mammogram and ultrasound and that took another two weeks. The beginning took a lot longer. And so then once I got into the mammogram and ultrasound, the radiologist comes in, she goes, "well, you know what we're looking at here, I think is Paget's disease." I was like...

Eva (05:11): "No"!

Kristen (05:13): Wait a minute. That's what the internet said. And it's never the rare disease. Come on, come on. It has to be something else.

Eva (05:18): Did you joke with her like that?

Kristen (05:20): Yeah, exactly. I was like, are you kidding? I'm like, well, no, if you, if you put it in, that's what you're gonna find. Like it's always a rare disease. So that report referred me to a surgeon and suggested an MRI. So I got in to see the surgeon pretty quickly. And I was like a bulldog when they would tell me that the MRI was two and a half weeks out. I was calling every day, the appointment place saying, do you have any cancellations? Do you have any cancellations? You're like, I didn't wanna wait. I wanted to find out what was going on.

Eva (05:52): Smart.

Kristen (05:53): And so I got in like my MRI, I got in like a little over a week earlier. So that was the key to getting this moved up because he set up the MRI before he even got the biopsy back. So after the mammogram, I went to the surgeon, he did, what's called a punch biopsy.

Eva (06:11): What kind of surgeon is this?

Kristen (06:14): Oncology surgeon? I mean a like cancer surgeon.

Eva (06:18): What's his name?

Kristen (06:20): His name is Rivera. Dr. Rivera. I can't remember his first name. Anyhow. So he did, what's called a punch biopsy, which is basically where they numb. That was painful actually. I mean, relatively, it was uncomfortable I should say. And so he was able to punch like a two millimeter piece of skin. It was like a needle, but it had like a little canister in it where they punch it and they sent that back. And that was, he did that on December the 15th, I think mm-hmm yeah. And the next Friday on the 18th, he called me and said it was malignant carcinoma.

Eva (06:57): He called you himself?

Kristen (06:59): Yes. Oh yeah.

Eva (07:00): Yeah. From the work that I do and he's board certified in general surgery, so- okay. His original training was in lots of things. And then after that, he went on to specialize in removing cancer. Okay. So he knows how to do lots of stuff, but he got board certified in 2007. So he's mid-career which means he has a lot of experience.

Kristen (07:22): Well, uh, yeah, he called me himself from his cell phone and then he even asked, he said, "If I get results over the weekend, can I call you this weekend?" So he really wanted to get the information quickly. And so then they did the MRI and the MRI confirmed what was going on. So I think what's really cool is that in this portal I can see all the test results, but when it's a biopsy that could be malignant or some bad news, the doctor has to release it. So I don't see it first, which is that's key. But he referred me immediately to a radiation doctor and also my oncologist, Dr. Ali, and she's so good. A L I, her name's, uh, Sonya Ali, he got those referrals within minutes and I got appointments. It was like right after Christmas,

Eva (08:18): She looks very nice. You know, she is. Cause you can tell good doctors by their photos. No you can't. No

Kristen (08:24): You really can't. No, I mean, no, but I mean, no, but she is nice. I like her, um, a friend of a friend who had breast cancer, who I was talking to. She has her as well. Mm-hmm and she just went through everything. I mean she and hers was stage one and it was a little different than mine, but she raves about her and every time I would go and get blood drawn or an EKG for a baseline for all this, they're like, oh, Dr. Ali is awesome. You know, like when people know her,

Eva (08:54): You said your friend is stage one, you're at stage three.

Kristen (08:58): Right.

Eva (08:59): Do you understand the differences in, in a way that you can explain back to me?

Kristen (09:03): I think so. You could Google it too, but in, in general, stage one is what you want. You want stage zero, but stage one is that there's a tumor. It's really in one little spot and that's all there is. So example, had mine not been on the skin and it was just inside. It would be a one or a two, maybe just a one mm-hmm I think two has to do with maybe there's more than one tumor and I may not be saying this exactly. Right, but it's still localized in the breast in one spot. So there's stages three, a three B three C. And it all has to do with just kind of the physiology of the tumor. And then also the tumor is a grade two because it's bigger than two centimeters and under five. And then so in a grade one is, you know, under two centimeters and mine's no 2.6 centimeters. So it's not that much over. So the bottom line is that the stages really have to do with lymph nodes are key too. If lymph nodes are affected, it immediately raises the stage. I think almost automatically two or three.

Eva (10:26): So today was your first day of chemo.

Kristen (10:28): Mm-hmm but so far I'm noting, which is good. And I only cried once.

Eva (10:34): What made you cry?

Kristen (10:37): So the first thing I did was I went to have the port flushed and then they do labs and they make sure they put the thing on there, the little tube to do the chemo with, you know? And so like, they're the ones that access the port and she was telling me what's gonna happen. And then she said, I think she said, do you have any questions? And I said, yeah, do I really have to do this? And then I got tears in my eyes and I said, "I'm sorry, it's just a lot." And she's like, "I know it's okay. We can go as slow as you want." And she asked and she went and got me some water and stuff. So, and last night, all I could think is I don't, I don't wanna do this. I don't wanna do this. Can't it be like, it's the last day of summer vacation. And I didn't have to go to school tomorrow. But then, you know, I looked at it too, is like, okay, this is the beginning of the healing. This is the beginning of the medicine. Even though it's gonna be a bumpy road,

Eva (11:26): This can't beat you down. Cuz what you've just been through is

Kristen (11:28): I know

Eva (11:31): This isn't gonna be it.

Kristen (11:33): No, this is

Eva (11:34): Not gonna be what gets you.

Kristen (11:35): No, it can't be no, there's no way it can be. I was talking to someone the other day about this and I just said, you know, it's almost like, even though this is like life threatening it's and it's cancer. And everybody's like, ah, you know, that's what you never want. But I feel like there's a roadmap. And I had a team of professionals who have a plan and with all the stuff that went on before, you know, with depression, anxiety, PTSD, like not knowing, you know, how everything was going to go. Like that was harder to navigate for me than this. Because I didn't have any answers. Mm-hmm and got so down and my mental state was not good at all. And I had put on a bunch of weight. I was drinking a lot. So if, obviously my antidepressants weren't working and I was in a place where I like looked at a bottle of Xanax and it was like, I think this is gonna be it.

Kristen (12:35): And then I thought about Brian and I thought he doesn't deserve for this to be his story. Like that's not cool of me to do that. And I was using alcohol to numb all of the pain and was drinking so much. And so when I went to rehab or treatment, however it's looked at, is there was a recipe kind of like what I have now. Like they knew how to do it and I had to do the work. But before that it was just floundering trying to figure it out. And so that's a really long way around saying that this is to me, if I do what I'm supposed to do, the chances are I'm gonna be fine and like high chances, I'm gonna be fine. And other people are handling it for me and it's, you know, and it's gonna be fine. There's so much support that I have. And like so many things that are in place that it's like, I just gotta show up to all of these things that they're telling me to do and follow the directions. Nobody can do that for me.

Eva (13:38): Well, that's kind of nice.

Kristen (13:40): Yeah.

Eva (13:41): What were you thinking last night when you went to bed and then what were you thinking when you woke up this morning?

Kristen (13:46): Last night when I went to bed, I was thinking about, I have my bag ready and I was thinking, I wanna wake up and have this not be true because that was something that like everyday when I would wake up, I'd go, oh, and then I'd go, "oh yeah, shit I have cancer. I gotta deal with this"

Eva (14:07): Kind of like the first two months of the pandemic when I would wake up, I'd go, "oh, it's still here."

Kristen (14:14): Yes. And I was concentrating on trying to get some good sleep because I knew I needed some good rest and I got about five hours and I woke up this morning and uh, first my first thought was I really was really glad I slept and I was afraid I was gonna have nightmares about it. And I didn't, I had dreams, but I didn't have any nightmares about that. He was about school. Weird.

Eva (14:39): That'll give you nightmares.

Kristen (14:41): the, the other cancer in my life but I checked the news and I just kind of did what I normally do. And it was this weird thing where I was like, okay, this is the last few hours. You're not gonna have poison in your body and that your body will not have effects of chemo in it. And my mom had really bad effects of chemo. And so that's always in my brain and I know it was 43 years ago and it's different, but it's always in my brain. And so I just was like, "all right, let's, let's go." And I went and I got in, you know, my friend's car. I met her and I looked at her and I said, are we really doing this? This is usually a movie or someone else that you're helping or whatever. It's not you. And it wasn't doom and gloom.

Kristen (15:32): It was more like still shock and disbelief that this is what I'm doing because I don't feel badly. I feel a little tired, but I don't feel sick. Well, I may feel sick tomorrow, but I feel like I'm in great health. Like people laugh at me. I'm like, I'm in really good health. I'm like, they're like, "uh, are you?" I'm like, "well aside from the obvious." Yeah. So I mean that's, it was disbelief and it was also a little bit of, I'm gonna go kick ass. I'm very careful that I put on a pair of leggings where I have two of them, two pairs so that I never know which of them I wore to chemo first. So they're not my chemo pants.

Eva (16:14): This is why I can't throw away all these ratty things that were the thing I wore to the hospital when Kari was born or

Kristen (16:21): Right.

Eva (16:22): Like none of this stuff should be in my house anymore, but I can't let it go.

Kristen (16:25): Right. It's a profound time. Yeah. And so that's kind of what I was thinking and really, you know, you and I talking about this kind of invigorated me that this was a, this was gonna be like a, it was gonna help other people, you know, hopefully, and that it was like gonna chronicle the journey that I feel vulnerable and open enough to just talk about. And hopefully it helps somebody.

Eva (16:47): I'm glad I caught you at the moment that I did. Yeah.

Kristen (16:50): Yeah.

Eva (16:51): And that you were willing to share this story.

Kristen (16:54): I, yeah. And I, I feel like I don't approach things in my life from a fear perspective that much anymore, but I was scared last night from about, I'm gonna go from probably about four to five o'clock on last night until I went to sleep. I was scared.

Eva (17:12): Where did you talk to last night?

Kristen (17:15): Um, I talked to one of my mentors here, Carrie, and we just kind of went through what was going on. And I reached out to my sister, um, in a text hoping that we could talk and she wasn't available at that point in time and just told a couple of close friends I'm scared and was just reassured. And I cried. I just sat here and just like sobbing. It's weird. I'm not, I can say this this moment. I'm not scared of the cancer. I'm scared of what the process looks like. You just don't know how sick you're gonna get. If you're gonna get sick, what's gonna trigger you. Like what smell is gonna make you throw up or whatever. But that's the only thing I can kind of liken this too, because everybody's experience with chemotherapy is different. And so I don't know what it's gonna look like.

Kristen (18:05): So it's also like if I have to just look at the next thing, the next action that I need to take, because when I look at it and I go, okay, so I'm gonna finish this chemo at the end of may. And then June is surgery month. And then I have a month and a half, two months to recover from that and then radiation and then hormones. But I mean, that's my protocol. And I'm like, so that takes us to 2022. And I really built myself back up strong. And it's hard for me to consciously know I am tearing my body down in order to cure it and then I'm gonna have to build it back up. And so I think that's, what's been kind of hard and it's not that I'm perfect, but I'm just like, I worked really hard to get to this place. And so luckily that's the physical body and I have like my mental health and my grounding kind of in check. I feel like this moment , I don't know what it'll look like in a month, but

Eva (19:13): I feel so grateful that your heart is where it is now.

Kristen (19:18): Me too. Me too. Yeah. I mean, that's why if there's a time to have it and there's never a time to have it. This is, we were talking about that, you know, this is it.

Eva (19:28): Exactly.

Kristen (19:29): And so,

Eva (19:31): So you sent me a photo this morning of your view from your chemo chair, looking out at the ocean. Mm-hmm what was your morning like once you finally got there?

Kristen (19:41): First of all, it was early. So I got to pick whatever chair I wanted. And of course I picked one that I could see the water from and it looked over Torrey Pines golf course and to the water and that put me at ease and it was meeting with the nurse and she was telling me like what they were gonna do. And she went through all the side effects and the drugs and kind of told me what to expect, you know, and gave me a big booklet. I don't know, it's probably 60, 75 pages all about chemo and about every, just every symptom, every like who to call for this and that and, and what to do and what to watch out for and all that.

Kristen (20:27): So weird to fill it going in. Yeah.

Nurse (20:29): Can you taste it

Kristen (20:31): Not, yet, I could taste it. I could taste the flushing, like the, yeah. Does it taste like acetone? Mm-hmm yeah. I can taste that.

Speaker 4 (20:37): Such a pleasant taste.

Kristen (20:38): I know.

Nurse (20:39): So this that's going through the line here is the dexamethasone. That's the steroid.

Kristen (20:43): Okay.

Nurse (20:44): So what this is doing is just putting into the line and then we program the pump to deliver it over like 43 minutes.

Kristen (20:51): Okay.

Nurse (20:51): So it takes like 13 minutes to get into your system.

Kristen (20:53): Uh huh.

Nurse (20:54): And then a half an hour to just sit in your system and kind of like get your body prepared before the chemo.

Kristen (21:00): Okay.

Nurse (21:01): Um, why we do it at such a slow rate is that it can cause some burning actually in the genital area.

Kristen (21:06): Okay.

Nurse (21:06): So that's why it goes in over those 13 minutes.

Kristen (21:09): Okay. I appreciate that. Yeah. I don't want any burning. Yeah.

Speaker 4 (21:12): Not comfortable. Yeah. Not at all.

Kristen (21:16): And then I had to sign, I had to sign that they were gonna put poison in my body and I had heard how, how hard, how brutal the first chemo was, the one that is the red devil. Right. Um, and it's, I can't remember the names, but it's AC chemo, if you Google it. And it's the badass stuff that kills the cells, but it's also pretty brutal. And especially when they nickname something, the red devil. So I'm thinking of it as the red devil killing the cancer cells. It's fine.

Eva (21:49): How many other people were in the room with you?

Kristen (21:52): There's chairs that were probably about 20 feet apart.

Eva (21:57): Oh, like extra COVID spacing. Is that what they were doing?

Kristen (22:01): I don't know if it's extra COVID spacing or if it was just like that already, because there was room for like a rounded curtain. So behind the curtain, there was a hallway and there were a couple of other chairs back there and there was a gentleman. I mean, there were people on both sides of me. I could hear them getting their directions and all of that.

Eva (22:21): So you couldn't see anybody else

Kristen (22:23): By choice. Okay. Yeah. I could have left my curtain open. Yeah. But I just chose to have privacy and maybe that's something that, you know, I'll feel a sense of community, but to me today it needed to be private and it needed to be personal. And I needed to be able to take my selfies if I wanted to and not have people looking at me or, or, you know, just, and not that's important, but it, it kind of, it was for me to, I wanna see what I look like now. And then in the next one, and then like, you know, I wanna see a progression and understand it, whether it's good or bad or bald or not. And so, but when I got there, there were maybe three or four other patients that were being set up. And by the time I left, there was a good 25 to 30. And it was the gamut of people on their phones, of people passed out sleeping. And I, I would imagine it looked much, much different before COVID because you could have someone there with you.

Eva (23:21): Right. You could bring a friend

Kristen (23:23): Uh huh

Eva (23:23): And did any of the other people look really, really sick.

Kristen (23:26): They just looked like normal people. Yeah. And like, I was feeling like this big wimp for crying because there was this guy, he had to be 90, who was there and he's like, "okay, I'm here." You know? And he had his little bag of snacks and water and sweater and all, you know, all that kind of stuff. And everybody was just like, here's what we're doing. You know? And somebody was talking about, they had a mutual friend in a business and they were talking about that. And another woman when I was waiting to go in, she left and she goes, okay, I need to schedule my next chemo. Like, you know, get my teeth cleaned. And she had all her hair or it was a great wig. I don't know. But it was like, people were just moving from appointment to appointment. Like, this is just what they were doing at this point in time.

Eva (24:11): What did you do while you were there? You know, it was what, a four hours

Kristen (24:16): Long. Yeah. So the premeds before the chemo were, there were two anti nausea medications. And one was like, especially for that time right there. And then the one that lasts between 12 and 24 hours, and then there was an IV steroid. And so those three things probably took about... the education piece and getting things started, nothing really started till nine medicinally. And so that took about an hour and then the red devil was 20 minutes. And then the other one was like an hour, but I had to chew on ice chips. So that's what I was doing a lot of the time, and I was reading. But because you can get mouth sores that kind of chemo affects your whole digestive system from literally your lips all the way off the back. And so by keeping the ice in my mouth, it was helping to avoid the sores while the chemo was actively going in.

Eva (25:14): Oh boy.

Kristen (25:15): Yeah. And so I was, I was listening, I was looking at the water and it was quiet except for the nurses and stuff. Because I wanted to make phone calls, but I really would've been, that I was that obnoxious person on my phone, you know? Yeah. And it would've been disruptive. I was watching everything happen. You know, I was kind of fascinated by the process and I was reading, I was answering emails and texts and stuff like that. And just the love that came in was just so like heartwarming at one point I think I fell asleep for about 10 minutes.

Eva (25:49): Oh that's

Kristen (25:50): Nice. Yeah. I was weird. I was surprised I was that relaxed.

Eva (25:55): And then I hope you took yourself out for lunch afterward or did something nice. Did you treat yourself today?

Kristen (26:01): Yeah, actually I did. My friend Jerry. She picked me up and I did go back to my nanny family and I mean, I treated myself by playing with the baby for a few hours. And then a good friend of mine that I went to high school with who now lives in Oregon. She texted me and she said, "what's your favorite restaurant? What do you want? And I'm gonna have DoorDash bring it to you tonight."

Eva (26:24): So what did you pick?

Kristen (26:25): I got the steak plate because you can get tofu, you can get shrimp, chicken. So I got the steak, this is my total comfort meal, steak, Mac and cheese, And the steak is just like slices of like a Tenderloin or something and it's sweet potatoes, but it has like a chili sauce on it.

Eva (26:46): Mm.

Kristen (26:47): So yeah. So totally carbs and red meat. So tell him to order that and he'll be happy.

Eva (26:53): I'll just tell him they have meat and he'll be fine.

Kristen (26:56): Okay. Good.

Eva (26:57): And mean, he really goes wherever I tell him to go anyway, doesn't he?

Kristen (27:00): Yeah, pretty much. So that's what I had. And like I'm supposed to eat small amounts of things. I've only really tasted the yams or the sweet potatoes because it does have a little bit of spice to it, which I love, but I didn't want, I'm just like trying little pieces to kind of see what my stomach will handle. And of course the Mac and cheese went first of course. And I've eaten half the steak and then probably like in another hour I'll probably finish the rest.

Eva (27:28): So what's next?

Kristen (27:30): What's next is I have steroids to take for days two, three and four. Those are supposed to help with side effects. And then I also have anti nausea medicine. And so what, like what's immediately next that's on my mind is just quelling these symptoms. Yeah. And understanding what the fatigue looks like for this first round. And so from what I understand, there could be a bad day. There could be four bad days. I think it also depends on what you think is a bad day. And then I think I'm okay for about a week and feel pretty good. Again, maybe a little fatigued, you know, because my blood cells are trying to, to replenish themselves. Oh wait, no, wait. There's something else. That's kind of cool. That happens tomorrow. There is a, I can show you that with this. Let me see if you can see it.

Kristen (28:24): Um, there's like this little apparatus, see it blinking? Yeah. So what that is is that's this thing that they put on me today, but it's basically growth factors. It injects growth factor into you. And what that does is that stimulates your bone marrow to produce more of the cell for platelets. And it's weird. There was like a little pin prick where it like a needle put a little catheter in there and it just really felt like a pin prick. And at 2:15 tomorrow, the medicine is released into my abdomen for about 45 minutes. And then about 20 minutes after that, I take it out. I take it off actually, when the green light stops blinking, I feel kinda like Iron Man or R2D2 here with like I got the port, I got the lights, you know, and supposedly it makes a sound too.

Kristen (29:17): But when, when that's finished, the green light goes on and that tells me it's safe to take it off. So what's supposed to happen with that is your bones. I imagine it's like growing pains, you know, your bones get sore. And so of all things, what they tell you to take is a Claritin. There's something in that medication that helps alleviate the pain in your bones. Weird. I know it's very weird. So then along the way, tomorrow, you know, watching what my symptoms look like and making sure I take nausea medicine at the first, the first sign of it. And I've been very well schooled on exactly how to take it and, and I can alternate to medicines and that, all that kind of stuff. So it's very weird on my phone. Cause I had so many appointments last week to see that my next appointment is my COVID test on the 23rd, because I have to have a test two days before I go in for all of this. And that's it. I do the test. And then the 25th, we do this all again,

Eva (30:19): January 25th.

Kristen (30:21): Mm-hmm

Eva (30:22): Okay.

Kristen (30:24): And between now and then I'm getting my hair cut, like Charlize Theron in Mad Max, like short. So I'll have to send you a picture of the haircut that I want. Those are things that are coming up before the next appointment. You know, I wanna be sure that I, yeah, because the psychological pieces, I know I can't manage 'em all, but as many as I can manage, I want to, because first of all, if my hair's long enough, I wanna donate it to Locks of Love or, you know, one of those organizations, but I could imagine it would be hard to pull hunks of hair out. And so if my hair is shorter, maybe it won't be as traumatic. And then I also want, I also want blonde tips because my head will be white underneath when I lose my hair. And so I wanna kind of get used to what that looks like. Mm-hmm and I have little caps that I already bought because I was told you need to wear something at night to keep your head warm, which I never think about. Why would I? That's what's next?

Eva (31:28): There's just a lot of detail to manage and I can see your sort of, uh, teacher brain working.

Kristen (31:36): Oh yeah. Working

Eva (31:37): Through all of this.

Kristen (31:39): Yeah. You're right. Yeah. You can, you of all people see that. Yeah. Yeah. And truly it is my way of taking control of a situation I have no control over. Because I can sit here and I can say, yeah, I see a road, I see a path and I have, there's a recipe and it's all gonna be fine at any point in time, it can take a turn and I truly am not in control, but I have a plan. And so all of these things I'm doing are my way of trying to take control as much as I can of a disease. But you know, they're monitoring my heart in your lifetime. You can only have a certain amount of this drug or you will have heart failure. Mm-hmm so, and I'm not gonna be anywhere close to it. So it's kind of like those things and going to appointments and just putting myself on some kind of schedule for exercise, even if I don't want to. And I'm tired and just trying to be as normal as possible. And it's like, I'm fixated on this right now, but I really want to feel like I have it all on a calendar. like this lesson plan mm-hmm and, and that it's all written out so that I can just like, okay, here's what I'm doing here. Here's what I'm doing here. And I have my meds in a certain area. So again, it, it could go sideways at any point in time, but I'll have to get there if that happens. So

Eva (33:01): Well we've documented day one, I think pretty successfully here.

Kristen (33:05): Yeah.

Eva (33:06): And we'll come back and talk to you again after round two or near round two. Yes. And the only other thing I want to ask you before we kind of wrap this one up is how did you tell Brian and how did he handle it?

Kristen (33:22): So that's tricky because you know, Brian, he's in New Orleans right now, he's 23, was bartending, and he's really doing his own thing. He hasn't been in great contact with me. Not for any reason, except he's busy being Brian and he's 23. Exactly. Yeah. Yeah. And so my sister called him several times and then finally left a message telling him that I had breast cancer and that she didn't wanna tell him on the phone that she wanted to talk to him, but he wouldn't answer. And that same day, I didn't realize she was doing that that day. I called him. And I said, um, there's a couple things I really need to talk to you about. So give me a call and then didn't hear from him and on New Year's Eve, I called him and I said, "listen, I said, I need to tell you, this is really serious.

Kristen (34:15): And there doesn't have to be any drama around it or anything like that. But I really do need you to give me a call and I love you." And I intend on being fine, but it is serious. And he texted saying, "I can't call you today. I'll call you tomorrow, the next day. I love you and happy New Year." And I've yet to hear from him. So I did text him last night and said, please call me, you know, I have chemo. So it's interesting because I'm at a place right now where, you know, I love my son to death. And if something again were to go sideways and we weren't able to see each other or something, my heart is okay with him. And I know I've done everything I possibly can. What my fear is, the demons that he's creating for him right now, mm-hmm, by some of the decisions that he may not be able to take back, you know?

Kristen (35:12): And I'm not trying to be morbid. No, it's just, I had to get right with myself on how did I feel? But this is about me. It's not about me when it's his journey. He's choosing his journey right now, so that I don't take it personally because it's super easy to take it personally, when it's your son, you know, your only child and so much of my life has always been about him and about making sure he's, he's good. And I can't take it personally. And I know he loves me. I know that he's busy being 23 and you know, I don't need to guilt him or anything else. I did tell him in that message though. I said, "you know, I know the last few years I've been a lot with changes that I've made and with school stuff and all that."

Kristen (35:58): And I said, "I certainly hope that you never thought you had to take any of that on. And that's not who I am anymore. The drama is gone. This is a little serious, but this is, it doesn't have to be chaos. It doesn't have to be drama. And I just really wanna talk to you and let you know what's going on, because you deserve that." And I just said, "I'm solid and I'm happy. And I'm healthy except for the obvious, you know". And maybe he just needs to wrap his head around it, just figure out how he feels.

Eva (36:28): Thanks for listening to Breast Cancer Stories. There's a link in the show notes with all of the resources mentioned on this episode and more info about how you can donate. If you're facing a breast cancer diagnosis, and you want to tell your story on the podcast, send an email to I'm Eva Sheie, your host and executive producer. Production support for the show comes from Mary Ellen Clarkson and our engineer is Daniel Croeser. Breast Cancer Stories is a production of The Axis. the