Eva (00:07):
This is a story about what happens when you have breast cancer told in real time.

(00:16):
It's been a while. I probably should have gone to the bathroom before we started. I might have to get up. Hi.

Kristen (00:23):
Good morning. It has been a while.

Eva (00:26):
I'm happy to see you.

Kristen (00:27):
Same.

Eva (00:28):
I see that you moved again.

Kristen (00:31):
Did you know I opened a moving company?

Eva (00:32):
For yourself? Is that being your own real estate agent so you can get a deal on your own house?

Kristen (00:39):
Pretty much. Pretty much. Yeah. I'm in LaCosta. And last we talked, I think I was in Escondido, and very long story short, there was toxic air and a mouse infestation in that house.

Eva (00:53):
Healthy.

Kristen (00:53):
Super great. Yeah. Actually the mice were coming up through my bathtub.

Eva (00:58):
Could you hear them in the night and stuff? Were they driving Jack crazy?

Kristen (01:04):
Yes. There was one in the wall that he was going back and forth. But one morning, one morning I'm laying in my bed and I'm hearing this scratch,scratch, and I thought it was Jack at the end of the bed because when he asked to go to the bathroom, he just kind of scrapes and I was like,

Eva (01:20):
I don't want you to finish the story.

Kristen (01:21):
Okay. No, but I look and my closet's open a little bit and it's maybe six feet from my bed. And I look and this little guy looks at me's just like, and for anybody who's listening, that was my eyes wide open looking like a mouse.

Eva (01:38):
Yeah, you did look like a mouse.

Kristen (01:39):
Yeah. I stood up on my bed and I texted my roommate who was literally up upstairs and I was like, so just letting you know I have an irrational fear of mice and there's one staring at me from my closet right now. And she was like, are you sure? I'm like, yeah. So I threw a pillow at it and then I looked up all these things to do and got all kinds of essential oils and all of that to get it out of my room. So it left my room, but I went,

Eva (02:09):
Which one was it? Lavender?

(02:10):
It's cinnamon, it's peppermint, it's tea tree oil, it's all the strong ones and vinegar. Anyway, so I was like, okay. She goes, you know what? I'll make you some coffee, you just go take a shower. I'm like, okay. So I go in and I'm getting ready to get in the shower and I see my shower curtain moving and I open it and I was like, oh no. Oh no. And there was this little guy in there, and so she came down and trapped him, and I literally jumped up and down. Actually, I think I broke my baby toe on my left foot because I jumped up and caught it underneath the door. For some badass who can handle some shit, I mean this thing couldn't have been two ounces. It was just little teeny thing, but I just have an irrational fear. Anyway, so I spray all the bleach and stuff in, and so then that night I'm going to clean it up and there are three mice, little babies, trying

Kristen (03:13):
Babies.

Eva (03:13):
Babies, trying to get out of my bathtub. So they were coming up through the drain.

(03:19):
So, ou started packing right there, and then you're like, I'm done.

Kristen (03:22):
But the thing was, nobody but me was fearful of them.

Eva (03:26):
Oh no. Had they been there forever and they just didn't tell you?

Kristen (03:30):
I think that what happened is they put in a new air conditioning unit and it upset them. They were a little field mice, and so they came in and they just multiplied and multiplied and multiplied and

Eva (03:42):
No.

Kristen (03:43):
Oh, yeah. Yeah. I won't even go into all of it, but there were hundreds in the garage when we were moving. Hundred.

Eva (03:52):
Oh my gosh.

Kristen (03:54):
The other day I went to get a little nightstand thing that had been wrapped in plastic, hadn't been moved, it was completely wrapped from my previous place to move in here.

Eva (04:03):
Cuz you're a professional mover, and you know how to do it.

Kristen (04:05):
Because I am a professional mover and it was wrapped in plastic. And I put it in my car, I was like, and I opened the door, there's dead mouse stuck underneath there. And I just left it on the side of the road, just took it out, pulled over, left it on the side of the road and was like, I can't. I just can't. And I mean, I thought I went through everything and I was like, oh, wrapped in plastic, there's no way. So anyway, I moved, I am in LaCosta, like right on the Omni Golf course, and it's not because I'm bougie. I just have an adjacent country club lifestyle now.

Eva (04:37):
You did in Austin too?

Kristen (04:39):
I did. I really did.

Eva (04:41):
I mean, you lived in the middle of Barton Creek, which was pretty bougie.

Kristen (04:45):
It was bougie, and to be honest, being a renter in California is a challenge, hence the moving and all of that stuff.

Eva (04:55):
Okay. So I asked you to do a check-in for a specific reason, but before we get to the reason that we're checking in with you, I want to ask you about season three that you've been working on for quite a while now. So can you give us a little bit of a preview of what's going on in season three?

Kristen (05:13):
Sure. I met Tita, who was a beautiful woman. She lives in Long Beach. She is a powerhouse. She is a friend of a friend and was diagnosed with stage two breast cancer back in the fall, and triple negative. She works for the Superior Court of Los Angeles doing inclusion work. She's a former professor at San Diego State. Those are the things about her. Beautiful woman. She's actually getting a double mastectomy tomorrow and going in for surgery. She's decided that she's not going to have reconstruction, she's going to go flat. She didn't have to a double mastectomy. She opted to, she could have had a lumpectomy, but she just said, I don't want this back. And she is just around my age. She has a son and a grandson that live here in San Diego. She went through six months of chemo. She has chemo toes.

Eva (06:15):
Oh.

Kristen (06:16):
Who knew? Right? We were just talking about that this weekend.

Eva (06:18):
Just one of the things you have in common with Tita.

Kristen (06:21):
I know. She actually, it's so interesting, she had the same chemo that I had in reverse order and it's triple negative. And so for those who don't know what triple negative is, it's like it's not estrogen positive, it's not progesterone positive, it's not HER2 positive. Those are things that oncologists like to see because they can give you some kind of treatment for them. They have me on an estrogen blocker, estrogen positive, and Dr. Rivera said that is the biggest way we're going to keep recurrence from coming back. So with triple negative, there aren't any of those markers to "treat". And so it's known as an aggressive type of cancer.

Eva (07:03):
It's more mysterious too.

Kristen (07:05):
Yeah. So she found hers stage two, again, she found hers as well.

Eva (07:11):
In the shower? Is that what you're going to say?

Kristen (07:14):
I'm going to guess maybe the shower. She actually could see a spot. She could see that it wasn't on her skin like mine, but it was under the skin, she could see a discoloration and there was a lump, and she did have really good response to chemo as well, just like Natasha. So I'm really looking forward to everybody meeting Tita. She is amazing, and by the time that everybody hears this, she will have had the double mastectomy up there at UCLA, and we'll be checking in with her again on that. So she and I have been talking since probably about six months now.

Eva (07:48):
So today, we're going to get caught up on where you are, and then in another week or two we'll come back and talk to you again because we're going to need an update after what you tell us today. And then we'll start hearing Tita's story in the middle of June.

Kristen (08:06):
Oh great.

Eva (08:08):
And in the meantime, as we're getting ready, our audience has always been really great at reaching out and telling us their own stories. In fact, I got one this morning that I need to send over to you. And even when we're in hiatus and we're kind of in our off season while Kristen's recording a new story, one of the reasons we don't broadcast the story while it's happening is that we need kind of a long lead time to see how the story's going to play out, because we don't want to release 3, 4, 5, 8 episodes and then have something happen that causes us not to be able to finish the story. So we wait until we know that we're going to be able to tell the whole story before we start production. So we're there now and we fund the production entirely with our own dollars and time.

(09:00):
And so what we're asking you for today, if you're listening and the stories have meant something to you and you want us to keep telling them, is to just help us out a little bit. And there's two ways you can do that. One is to subscribe on Substack as a paid subscriber, and there's a really inexpensive $4 a month option, which believe it or not, if there's enough of those, makes a huge difference to us. And you probably won't even feel it like, I've been getting a Juice Land every day. Don't you miss Juice Land, Kristen? Seriously?

Kristen (09:32):
I miss Juice Land and Taco Deli like you have no idea.

Eva (09:34):
Somehow, I have gotten addicted to Juice Land and every day about two, like I got to go get one.

Kristen (09:40):
I know.

Eva (09:41):
These little suckers are like $11. So if you subscribe to our substack, that's like three Juice Lands a day. I mean, one juice land, it's like three sub stacks equals one. Okay, so, and then the other thing that I'm looking for is a run of show sponsor. So if your business or your organization is in a position to find our audience valuable, that's something that I want to have a conversation about. So if that's, you can find my email address in the show notes, and I can be very flexible on that, but we would love to have a season sponsor that would include all three seasons, not just the new one, but as we start telling Tita's story, that's something that would be very helpful to all of us here.

Kristen (10:25):
Absolutely. Well, my moving company will take off soon, and I'll sponsor.

Eva (10:28):
Kristen's moving company in Danny's ice cream truck.

Kristen (10:34):
Did you meet Dan, by the way?

Eva (10:35):
We've been emailing. So if you've listened to our past episodes, I think Danny, the ice cream truck has come up in the past, and I hired him to do my four year old's birthday party in two weeks. So I do get to meet Danny in person.

Kristen (10:47):
You're gonna love him. You're gonna love him.

Eva (10:49):
Yeah, I'm very excited about that. Every time I tell another parent, I got a real ice cream truck coming, their eyes light up and they're like, oh, we'll be there.

Kristen (10:57):
Oh, see?

Eva (10:59):
It's not for the kids.

Kristen (11:01):
It's for the parents. I think maybe he might play some music and make them run down the street if you ask.

Eva (11:08):
Will he?

Kristen (11:09):
I think so. Yeah. Get your coins and start throwing.

Eva (11:12):
Well, I'm all over it. Alright, I updated the team yesterday on why we're here and we're all, I will say we're all nervous with you. So I think we should get to the reason I asked you for an update, if you're ready.

Kristen (11:28):
Oh yeah.

Eva (11:28):
Go ahead.

Kristen (11:29):
I don't even really know how to say it. It could be nothing like everything else with cancer. It could be nothing, but it's this, it's this pesky sibling that pokes you in the car. I didn't touch you. I'm not touching you, I'm not touching you, I'm not touching you. And you're like, well, what are you doing? You're still there. And what that is, is recurrence that is back there that's always looming. And I'm just going to say right now, I'm good I think? I don't know. The last time we talked, I think we were talking about my bladder issues. We were talking about a lot of different things and I had fallen, I think I had fallen and broken some ribs.

Eva (12:12):
Oh, that was so bad.

Kristen (12:13):
They still hurt, mofo, 18 months later they still hurt. And I broke them on the right side. And so reminding people I had right side breast cancer had a full reconstruction, all that stuff. I don't know if I shared with you that Dr. Pacella said, Hey, just letting you know if your chest was concave, those implants would probably still be in place. Because what I was thinking was that maybe I'd ruptured one, but I think they might've ate it in breaking a rib. I don't know.

Eva (12:41):
Oh, they helped break the rib.

Kristen (12:43):
I feel like they pushed against it. Yeah, I mean I fell on 'em. I don't know. That's just me.

Eva (12:49):
They're really tough. In fact, I have a client who made a TikTok where they step on a breast implant in 10 different kinds of shoes, like here's a high heel, here's a sneaker, and the implant does just fine with every kind of shoe. And that TikTok has millions and millions of views.

Kristen (13:06):
Well, there was no film of me falling face forward flat on it.

Eva (13:10):
Thank God for that.

Kristen (13:12):
Thank goodness. But anyway, so who knows because it's right back behind there that they were broken. And then it was also rib seven down below the bottom one. Okay. So with that poor Dr. Pacella, he got to go through that with me and give me the news. I was fine. But in the midst of that, there was a little scare that maybe there was something and it was scar tissue or fat necrosis or something like that, because of the fat transfer. Everything was fine. But they did have a baseline with some stuff in my chest from that time. Fast forward, I've been having some really crazy wrist pain and hand pain. I have some really bad osteoarthritis in my thumbs and went to a hand guy. And the hand guy says, well, how long has this been hurting you? How long has it been numb? And I'm like, I'm going to sound like an idiot here, but I don't really know. And I'm like, just hang with me here. I went through breast cancer, I had Taxol, which causes a neuropathy. So I've had some numbness and some pain, and I take anastrozole for bone pain.

Eva (14:16):
Well when everything hurts.

Kristen (14:19):
Everything hurts. But the hand was really getting weak and I was dropping things and even more so than with neuropathy and stuff. And I had a little nodule at the side of my wrist. I'm like, what is this? And so he did the hand X-rays and all that kind of stuff. And he's like, I think let's just have my neck guy look at you too and see, let's do a neck x-ray. I want my spine guy to take a look and see what's happening. It could be a pinched nerve, it could be some stuff out of line. So I go next door to the spine guy and they do tons of scans. I've got all the scans, all the X-rays, all the MRIs, inflammation MRI, all the things, all the contrast without contrast. Turns out I have bone on bone at C five, C six with my neck. And what's that from? It's probably from life, right?

Eva (15:12):
Sure.

Kristen (15:12):
I've got a bulging disc right there too that's pushing on some nerve stuff. And again, he asks, how long has this been hurting? And I'm like, you'd think I'd know, but here's the situation. And this is not a poor me, but I live with a low grade, about three/four bone pain, and it just is what it is and it's one of the side effects. And I live with a certain amount of numbness and neuropathy. Sidebar this finger, I burned it without feeling it.

Eva (15:46):
What?

Kristen (15:47):
Because of neuropathy, and my whole hand got infected. I had a huge infection. Stupid shit that happens. It's better now. It's much better now. But my hand was huge because I didn't know it was a burn, and I thought there was a splinter in there, and I tried to get the splinter out and infected the burn.

Eva (16:03):
Oh, dear Lord.

Kristen (16:06):
Follow that if you will. But it's stupid shit they don't tell you, right? You're going to burn your finger and not feel it. Okay. This is all sidebars going to focus back in. So all these scans are happening. And another little sidebar, I lived, one of the reasons that I moved had to do with the toxic air too, in the rat place or the mouse place. And so my primary care was like, let's just be careful and get you to a pulmonologist, he can take a look at some things. He does a chest scan back in January and he finds little nodules, like some nodules. Okay, interesting piece too, like I wouldn't know this, my lungs look like, they call it ground glass, kind of like what glass looks like before it shattered my right one from radiation. And he's like, I'd be more concerned if you hadn't had radiation and you had this ground glass stuff.

(17:04):
So it's just like an obstruction in your lungs a little bit, but they're not really worried about it right now. But that showed up. Then there were some nodules that he says, had I not had breast cancer before, he wouldn't be worried about him, but he wants to be conservative. Let's do another scan in six months, take a look. I'm like, okay, another baseline in there. So this has all been happening in the background, and I've been having this low grade cough about four months. I don't know, is it allergies? What is it? It just is kind of sitting there. And so I go every six months I see Dr. Ali and she does an exam and I get this Zometa infusion for my bones to keep osteo, I can't even say the word osteoporosis from happening. And so she gives an exam each time and she sees all that's been going on.

(18:01):
And I said, I've been having this pain and it has been going on for about four months now, and it's right below where that rib was broken. And I was on an airplane and I leaned down in that small space to put my shoes on, and I felt like this horrible pinching cramp. And I'm like, what is that? So I was telling her about it, and had I not been in front of her, she would've been just like, yeah, it's probably just rib inflammation, it's still being fixed, whatever. And so she feels and she goes, wait a minute, I feel something. And I was like, wait, what? And she's like, yeah, it's about a centimeter. And she's like, could be a cyst, it could be whatever, but I need you to see Dr. Rivera and he needs to get that out. And I'm paraphrasing, of course, but Dr. Ali is not an alarmist.

(18:47):
She doesn't say this stuff. There's always an explanation for it. But her concern concerned me, right? So I kind of got past that, but she goes, yeah, I want you to see Rivera. And I'm like, okay. And I had an appointment to just check in with him anyhow, a month later, and they moved my appointment up. So I saw him about a week and a half later, and he's like, I don't feel anything. He's like, let's go in the ultrasound room. So he goes in there and he's looking, he's like, look, I don't see anything. This is just your body. I don't see anything. I was like, okay. He goes, but you know what? She's concerned about it, so I see that you have this chest CT scan coming up with Dr. Fan, who is the pulmonologist, I see that coming up.

(19:33):
I'm just going to put an order in there asking for it with contrast, and then we can see what else is going on in there. So I'm like, all right. So I go in last week had the CT scan with contrast. So I get the results of the CT scan and me and Dr. Google go to town, because that's who I am, right? And I'm waiting for them to call me. And it's the end of the day and I'm like, nobody's called me, there's something wrong, nobody's called me. And what I have surmised is that I have collapsed lungs in the lower lungs, I've got an enlarged artery in my heart, and I've got a lymph node that is in the ligaments, the ligament between my liver and my stomach, like a gutter, a gastric lymph node that has been growing. They measured it a year and a half ago, they measured it back in January and they measured it again, and it's consistently growing. And I'm like, well, that's not good. But I'm like, wait, I have lower collapsed lungs, and an enlarged heart? Should I be in the hospital? And so

Eva (20:48):
Probably.

Kristen (20:48):
Right? I literally tell Sam's mom, which I'm still with Sammy, he's four. So I tell Crystal, I'm like, Hey, just so you know, in case the paramedics come and I collapse, I'm going to send you a screenshot of this CT scan I had this morning. And she's like, yeah, it seems prudent.

(21:11):
So I send a note because I am a doctor, in addition to my moving company, I send a note to Dr. Ali and to Dr. Rivera, and to the pulmonologist with Hi. Hi, Kristen, you're not crazy.

Eva (21:26):
With what emoji?

Kristen (21:27):
There's no emojis that are allowed in the portal, but with a screenshot of the scan that they've all received, of course. But I'm just like, Hey, I know that you guys are on this, I know it's on your radar to take a look at this routine scan, but me and Dr. Google found this, and so do I really have collapsed lungs? Do I really have an enlarged artery? Should I be in the hospital? And I know you guys are on this. Get back to me when you can. Right? And so I don't hear anything, and I'm like, there's something really wrong, they're all talking, right?

Eva (22:07):
They're having a committee meeting.

Kristen (22:09):
Right. They were actually.

Eva (22:11):
Oh, they were?

Kristen (22:14):
They were. I get a call the next morning from Courtney who's at Dr. Ali's office, and she's like, Hey, I saw your note. And I'm like, and did you laugh? And she's like, yeah, I could see you and Dr. Google were having a good time. And she said, sorry, we didn't get back to you yesterday. Dr. Ali, Dr. Rivera, Dr. Fan, who's the pulmonologist, they were all talking about what to do, and we think the next best step is a PET scan. And I was like, PET scan, for those of you who can't see me, my eyes got really big right there.

Eva (22:42):
The mouse face, again.

Kristen (22:44):
It was the mouse face.

Eva (22:46):
Same face. Yeah. Yeah. Good, good. I'm just going to give you some ears and we'll be done.

Kristen (22:53):
Are you going to do that? Thanks. Instagram.

Eva (22:55):
Marking the clip.

Kristen (22:57):
So while that doesn't sound like a big deal, throughout stage three cancer, I've never had a PET scan. I've had all the others, but I haven't had a PET scan. And Dr. Ali is extremely conservative with what she orders because when she orders it, it gets approved by my insurance. This is an expensive scan and it's a PET CT scan which combines the PET and the CT to be able to see everything. And so she's like, we're really concerned about that lymph node. But she's like, yeah, it's been consistently growing, and Dr. Ali said, that's not a place where breast cancer generally recurs, and it's a really odd spot, but with it growing, she really wants take a look at it. And I was like, okay, cool. Let's get that on the books. And the tapes in my head are playing from the very first chemo when I'm signing all the things about all the possible side effects. Side effects are lymphoma.

Eva (24:05):
Wait, wait, you read all that stuff?

Kristen (24:08):
I read a lot of it. Remember, I'm a nerd. Leukemia is a big one, blood cancer is a big one after chemo too. Of course, I'm sure I'm fine. I'm sure I'm the picture of health, as far as stage three cancer goes, right? All the while. I have had a lot of issues with digestion and my digestive system, my esophagus, I have a small hiatal hernia I've had for a while down where the esophagus and the stomach meet. That's from radiation. My esophagus has been fried since then. So I'm just used to having a lot of issues with all of that. And so I don't know if there's something wrong or not. The PET scan is in about two weeks. I'm hoping it's nothing. I see Christine tomorrow for my lymphedema physical therapy, and I'm going to chat with her a little bit about it. She's pretty good at knowing what is going on with lymph nodes. And to be fair to that lymph node, I've had a lot of gastric issues and I had a lot of chemo and shit going through my liver. So it's been working hard for a while. If it's sitting there between my liver and my stomach. I dunno. What does this sound like to you?

Eva (25:29):
I'm like, I didn't even know we had ligaments and lymph nodes between our organs.

Kristen (25:35):
Me either. Why would you know that?

Eva (25:38):
I wouldn't.

Kristen (25:39):
It makes sense, something has to hold them up, right? So it's good news that it's not a place where breast cancer usually recurs. But with all that said, if it's anything, it's super early.

Eva (25:56):
That's true. Yeah.

Kristen (25:58):
And I think the bigger issue for me, it's that whole scanxiety thing of what the fuck else are they going to find in that PET scan? I've never had a PET scan before. Or what aren't they going to find? Am I going to get this great picture that I'm super healthy? And it could be like, Hey, you got nothing going on in there, girl. Go run a marathon. Get that weight off, quit basking your own pity party there and nobody's poking you. It's your own mind. And so it's enough that Dr. Ali is concerned, and I do have a really great team and I'm really grateful for that. But I'm scared.

Eva (26:41):
I think as an observer, one of the most unusual things to me is how long your relationships continue with these doctors. Because before we told this story, my only view was reconstruction, which is just such a tiny part of the story.

Kristen (27:02):
Yeah, isn't that interesting? Well, I knew that I was going to see Dr. Ali for a while because I'm on this anastrozole, this estrogen blocker, and she monitors me for five to 10 years, and she's my quarterback on this. But here's the thing, is that I did go a year without seeing anybody. I just didn't want to and was having enough scans that people were looking at me all the time. So we go back almost three years, and I'm having this fit that Dr. Ali is not ordering scans every six months, cuz I'm just sure she's not going to, why aren't they keeping up on it? Why aren't they looking at me every six months? I have to go back and go, you know what? She told me that if something was bothering me for more than three weeks to let her know, and if she thought we needed a scan to take a look at it, we would take a look at it. She wasn't blowing me off. It's the real deal. She was being honest. So my fears that they were just sending me out into recurrence world and weren't going to keep an eye on me because I wasn't having scans every six months or a year were unfounded.

Eva (28:15):
It's nice to sort of see it come full circle, which I don't think we'd have been able to do without recording the story, so I'm glad we were doing it.

Kristen (28:24):
Yeah, same.

Eva (28:26):
Alright, so we're going to come back and talk again after your PET scan results?

Kristen (28:30):
Yeah.

Eva (28:31):
But you're going to text me right away when you get them right?

Kristen (28:33):
Absolutely.

Eva (28:37):
Thank you for listening to Breast Cancer Stories. To continue telling this story and helping others, we need your help. All podcasts require resources, and we have a team of people who produce it, there's costs involved and it takes time.

Kristen (28:51):
If you believe in what we're doing and have the means to support the show, you can make a one-time donation or you can set up a recurring donation in any amount through the PayPal link on our website at breast cancer stories podcast.com/donate

Eva (29:06):
To get the key takeaways from each episode, links to anything we've talked about and promo codes or giveaways from our partners, sign up for our email newsletter.

Kristen (29:15):
You'll get notes and thoughts from me related to each episode, and links to the most useful resources for all the breast cancer things. So if you have chemo brain, you'll be able to just go read your email, find anything we talked about on the podcast without having to remember it.

Eva (29:30):
The link to sign up is in your show notes and on the newsletter page at breast cancer stories podcast.com.

Kristen (29:36):
We promise not to annoy you with too many emails.

Eva (29:40):
Thanks for listening to Breast Cancer Stories. If you're facing a breast cancer diagnosis and you want to tell your story on the podcast, send an email to hello@theaxis.io. 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 AXIS.io.