Kristen Update: The Last of the Post-Treatment Horrors and Indignities (We Hope)

Kristen
00:00
This is a story about what happens when you have breast cancer told in real time.

Eva
00:10
Hey everybody, we're back with an update on where Kristen is after many months of not hearing from her directly. She's been interviewing Natasha, but she's back to talk to me, Eva, about what's been happening. And I actually don't know everything, so I might actually be surprised. And I might say actually a few more times. 

Kristen
27
<laugh> Actually.

Eva
36
The last time we actually had, <laugh>, the last time we had an episode focused on your story was in August of 2022. And I remember this one because you were talking about wearing flesh colored socks and cutting the toes out so that you could wear flip-flops to a wedding, which is like, I am sure an exceptionally high point in your story.

Kristen
50
It was a proud day. We will just say, super proud.

Eva
01:09
You have the flip-flops on, you made it. So it's been, you know, six months since we had an in-depth update from you? So it's a good time to check in.

Kristen
01:20
Yeah, absolutely. I think the last time we really talked about my health and anything aside from my amazing flip-flops, 

Eva
01:28
Oh, hold on, wait a second. I have learned a few things, in the meantime. I mean it's been exceptionally busy, but you moved again. Start there and tell me why you had to move again.

Kristen
01:41
Well. So I have moved again. I am going to Escondido now. I am about 15 to 20 miles from where I grew up, and went to boarding school about 6 miles from here up the road. This is one of my favorite places in San Diego. You guys know, you know, even how much I love the beach? I didn't realize this was one of my favorite places until I lived here, and we are up in the hills, it's really beautiful and on only about half acre to 3/4 of an acre. I am living with two of my closest friends here. I met them about three and a half years ago. And one is my meditation teacher. And then another woman Moksha, who I met through my meditation teacher, and I have never felt so safe in my life, as with these women.At almost fifty-eight years old, I never thought I was going to have roommates again. Who thinks that right?

Eva
02:38
No. Nobody. 

Kristen
02:38
And to be candid, I came to the realization when I moved from Del Mar that I had some issues with my feet. And then had moved and had a roommate and that situation, at the time I didn't think it was a blessing, but it is that it went sour pretty quickly. And so I had the opportunity to move. But I did realize through that process that I am not able to live alone anymore. And not only do I have some limitations, but it's probably something in my life that I wanted to avoid is at 58 years old feeling like I couldn't live alone.

Eva
03:22
Is it really just the feet or is it other stuff?

Kristen
03:25
It has to do with, we can talk a little bit about my feet. My feet have gotten better. It has to do with the effects from chemo and the combination of medications. My balance is really bad. About two months ago, I fell in my driveway and broke several ribs. And I fell in my driveway, just got out of my car, lost my balance and I fell so hard that I broke ribs. And I thought I had ruptured my implant, not because anything was wrong, but I fell so hard. And it was a Friday evening and I just wasn't focused on what I was doing. But, you know, I am able to have a jack on a leash. Thank goodness, Jack was on a leash and not in my arms because his little body would have been smushed.

Eva
04:12
Oh, yeah. Squished him. You remember when I broke ribs.

Kristen
04:14
Yes, yeah.

Eva
04:16
Yes. The Worst thing that has ever happened to me.

Kristen
04:20
It is unreal. Unreal.

Eva
04:22
So then you couldn't move for, what a month?

Kristen
04:26
Yeah, pretty close. Well, what's really interesting is that had I had real boobs and still had all of my blood vessels and all of my tissue, it would have been a really huge black, probably bruise on my breast. But instead it just made, what was radiated look a lot darker. And then it was also bruised around the side. And so I really do think that had to do with the implant. But I went to the emergency room the next day, and they saw a fractured rib, rib 7. And they said, "You know with the implant we really want you to go see your plastic surgeon". And so, poor Dr. Pacella. <laugh> You know like "It's me again. Hey. Hey, it's been six months. I have been bored. Time to come see you". Anyway, so I told him what happened. I was like.

05:20
And they ordered an ultrasound and he did an exam. He said, "I don't think that it's, you know, that it's this ruptured". And he said, "As a matter of fact, your whole chest could be concave and these things would probably still be intact". And I said, "Okay". And so that kind of like led me to, these implants may have helped to break the ribs. Right? So I am sure I am like, "I have one fractured rib and it hurts this much?" There's no way. There's no way.

Eva
05:45
They didn't do the right films did they? 

Kristen
05:48
Nope, no. So fast-forward a little bit. They do the ultrasound, and they're like, "Oh, that looks great. Everything's fine, except this little spot right here. We see something that we feel like needs to be checked into a little deeper".  And she said, "We would consider doing a biopsy right here except we don't want to add more trauma to that area. Oh and it's backed up against your implant, so we have to be really careful". So there's about a 4mm.

Eva
06:18
Like on the back side? 

Kristen
06:18
No, on the front side.

Eva
06:21
Okay.

Kristen
06:23
It's really just hard to explain, when you go to have an ultrasound for something else, and the tech goes, "I will be right back with the doctor". And my heart sank. And so the radiology, the radiologist comes in, and she says, "Yeah I would biopsy this but I don't want to do more trauma to the area. So I am going to send these films back to your doctor, and he might want to get an MRI and a biopsy". And I think I texted you and Natasha. I think I said something like "I can't speak, I can barely breathe".

Eva
07:05
Oh, that was that day. 

Kristen
07:05
"I'll tell you guys what's going on later".  And it was true, I couldn't speak. And I had to keep just trying to catch my breath because, it's not that it was gloom and doom and I thought it was something big, because it was  4mm and it was on my chest. Okay, so that to me was kind of good news except all I could think of was "I don't want to do this f****** stuff again, I don't want to do this anymore.  Like I just got finished". This was right around the time of my two-year anniversary of my diagnosis. And it's a really big deal to go two years without a recurrence. That's, it's a really big deal because the longer you go without a recurrence, the less likely there is that a recurrence will happen. And, so I was very nervous about this and it took forever to get the MRI. And they got the MRI and it was a very low chance that it was malignant. It was a three to ten percent chance that it was malignant and Dr. Pacella has said, "I really just think it's either fat necrosis or scar tissue". But, you know,

Eva
08:23
It's just a Skittle that you dropped down there. 

Kristen
08:23
<laugh> Yeah right, that's it. That's a skill that I dropped. And so I got the MRI and Dr. Pacella says, "I really I don't really don't think it's anything, but the radiologist really wants a biopsy". And so, I said, "Alright". So, I go in and doing the biopsy and I believe, I wrote something for our newsletter right before I was going into the biopsy. And I really, I really had gone down the road of "Alright. this spring, I am just going to go visit everybody". <laugh> And it was, it was like going through that, a little bit like going through that period when I didn't know what was gonna happen, you know. And I am more resilient than that, but it's trauma, and it sounds so dramatic, but it's just, you don't want to go through it again. And I didn't want that to be season 3. And part of that is because there are a lot of women who have written to us who have said, that we have given them hope. And I felt, I really did feel a weight on my shoulders, that I would be letting down the audience if I had a recurrence. Silly, right? But still, I really felt a certain responsibility with that.

Eva
09:45
I can see that.

Kristen
09:46
And I am going to be really honest, that was probably number six on my list of concerns, but it was a concern. And so they come in and she said, that the same doctor that I saw, she said, "You know, I really don't think we need to do a biopsy on this. I think this is just scar tissue". And I said, "Are you sure?" And she said, "I am pretty sure". And I said, "I need to be 100% sure because we're sitting here, it's been approved by my insurance. Let's just do this". And I think part of her hesitation really was because it was backed up against the implant.

Eva
10:22
 Oh.
 
Kristen
10:22
And she didn't want to rupture the implant. I have to say it was pretty cool watching this needle on there, go to the spot and get it. And so they did the biopsy and all of that, and Doctor Pecella called me a little bit later. And I had already seen the report that said that it was not, that it was not malignant.

Eva
10:47
To your point about the implant. I did have a, I do have a client who has a social media team. And one of the things they just did was, I am making a face right now because I can't believe anyone thinks this is their job. But they made a video for Tik Tok where they stepped on an implant with all these different kinds of shoes to see if it would pop. And they probably could have driven a truck over this thing and it wouldn't rupture.

Kristen
11:16
Okay, that's good.

Eva
11:17
Now I can say that I actually learned something from Tik Tok that was useful other than how to clean my house.

Kristen
11:25
Well, I was just thinking that the sharp objects might do it. But anyway, I saw the report that said that it was not malignant. But it also, it said that it left room for interpretation that they got the right spot. It kind of said, "We're not sure they got the right tissue", I mean if you interpret, if you read it. Right? And so I was like, "I need Dr. Pacella to let me know this". And so he called me and you know when a doctor calls you're like. "Oh, sh***".

Eva
11:56
<laugh> Oh no. "I wanted you to look at it, I didn't want you to call me".

Kristen
12:07
Yeah, "Just have your nurse call me". But he did call, and he was very sweet, and he said, you know, "It's scar tissue Kristen and it's really good news. It's just scar tissue". And then he said, you know, "With that said, if you have any pains anywhere that last more than three weeks, you need to call your oncologist". You know, he had to give me the speech of, "With this situation, there is a chance of recurrence". And so, we had, I mean, and we had a nice conversation. I asked him about his ski trip and his knee and, you know, it was fine. And so, that's great news. But prior to, this is back in September and October, I had some really bad rib pain and it was my ribs on both sides my rib cages. And it was hanging on for a very long time. And there was a part of my chest that was swollen like in the center like over my sternum and it was really sore right there. And so I went to the Urgent Care after talking to one of Dr. Ali's nurses, and they did a CT scan and she came back and she said, "I don't see anything as far as any metastasis, but there is a shady lymph node that's deep down below your sternum. And I need you to bring this to the attention of your oncologist and you need to follow up with her". And I said, "Okay. " So this was a couple months before this other situation. I was really glad to see that there is no metastasis, and I didn't think there was, it was just that now there's a shady lymph node. And it's also, just as a point of reference, I had been seeing Christine to do the lymphedema treatments. And I said, "Look at this. Does this look puffy?" And she's like, "Yeah". She's like "You know, that could just be from the stitch where Dr. Pacella", he put an extra stitch on the left side to make kind of pocket for the implant so it didn't, you know, fall down low at all. And then when I told her about the lymph node thing, she said, "You know it really could be that that lymph node is taking the brunt of that stitch that is dissolving".

14:34
So, I talked to Dr. Ali, takes a look at the CT scan, orders a bone scan. And she says, after seeing that the bone scan was, ready for this?  Completely clean, completely clean, amazingly clean, she thinks that the lymph node could just be agitated. But she said, "We want to do another CT scan before I see you in February, just to be sure it hasn't changed". And so, that's where we were before. I fell.

15:06
Right? <laugh> So it's like every f****** month something's going on. Oh and by the way every three weeks, a bladder infection. Every three weeks, as soon as I finished an antibiotic, I had a bladder infection again. And so it was just this, like, "Are you kidding me? Like can I never be well?" Well, and I finally had, I started to, <laugh> I can't believe I'm telling you this, there're these things that are called bladder installations that they do and I didn't know about it. My wonderful gynecologist and urologist, he works actually really closely with Dr. Ali. And he and I had actually had a conversation about whether or not I needed a hysterectomy because we had talked about that because of the ovaries and all of that kind of stuff. And we decided that that was not going to be on the table, which was a relief for me, because I was like, "I don't want another surgery". But because my mom had ovarian cancer, I really had to have a heart-to-heart with myself and with him about that. And so, I said, "Well, what's with all these bladder infections?" He said, "Hey the next time you get one, just call my nurse up, they'll do a little bladder installation, and, you know, we will get you all fixed up". I am like, okay, what is that? "Oh, we just put a catheter in and then put some medicine in there, and we take a sample to see if it's an infection or not. And if it's an infection, we give you some antibiotics. Otherwise, there's some stuff that numbs it and actually strengthens your bladder". Okay. So about a month later, call the nurse, and they do a bladder installation. And I mean, what it's, I am 58 years old, and I am having a catheter put in my bladder, to relieve the pain that you have from a bladder infection. Right.

Eva
16:59
So are you dating at all?

Kristen
17:02
<laugh>No. No. Why would I date? <laugh>You were thinking I was getting <laugh> busy and that's why I was getting these? <laugh>

Eva
17:17
<laugh> No, I <laugh>No. 

Kristen
17:32
<laugh> Okay.

Eva
17:32
No. I'm trying to imagine you navigating all of this and trying to go out on dates at the same time. <laugh> 

Kristen
17:32
No. No. I can't. No. There is no part of me ever in the world that wants to date again. <laugh>

Eva
17:37
Oh no.

Kristen
17:37
I know it was, just as soon as I said that Mr. Wonderful is going to ride in.

Eva
17:43
That's how it works.

Kristen
17:44
Yeah. Anyway, so I, about every month now I go and get a bladder installation because I get these bladder infections and take some antibiotics, and then they go away, and you know, and I have cut sugar completely out of my diet. Well because I was trying all the dietary things I could do, you know, to try to get rid of these. So it's, knock on wood, it's been five weeks since I have had a bladder infection which is a record right now. Anyway, so last fall, there's all this that went on, right? And it was just like every month, something was coming, was going on and then I fall. And it was after a Meditation Retreat that I went on, and if you remember, I found out that it has to do with my balance and it has to do with my feet. And so, the fall led to all this uh, this stuff. So I wasn't, there wasn't a month last fall that I didn't have some kind of CT scan, bone scan, MRI, biopsy, something, and I am just like, you know, I have just been really ready <laugh> to be, to be well. 

Eva
18:52
When you talk to other people who are going through a similar journey to yours, does this happen to everybody like this? Like Deborah who works with me, she had breast cancer a couple, three, four years ago. She hardly has anything happened to her.

Kristen
19:13
I think it depends on the treatments, you know, and how you're affected by it because I don't have neuropathy in my feet anymore.

Eva
19:21
 It's gone?

Kristen
19:22
Yeah, the neuropathy is gone. Mm-hmm. The issue is that the neuropathy destroyed the structure of my foot. And so my achilles was strained and then I had all this fascia that was built up because I wasn't moving very much because I didn't want to fall. And because I didn't move very much, it made the fascia really tight, which made all of my muscles tight, which made it really hard for me to walk. And I still have issues in my heel like a lot of foot pain in my heels and I can't, I don't, I mean I haven't walked great distances but my feet and legs are 85% better than when we last talked. I don't get him taped anymore. The key was that sports medicine, physical therapist. He gave me exercises that I do. And I think last time we talked, we were talking about how much time I spend stretching and  <laugh> on my lymphedema machine. I'm like.

Eva
20:25
Oh, I think I calculated that you were spending something like two and a half hours a day. Yeah, just on stretching wasn't it?

Kristen
20:31
It was stretching and it was doing things to be able to walk through my life. And I am down to about 40 minutes which is great and I do it in increments and I have also taken off some weight which has helped quite a bit. I am still 25 pounds above where I started with but you know it I will get there. And so that has taken a lot of the weight off of my joints and stuff too. The bone pain is still there that I have from the estrogen blockers. But to go back and answer your question, does it happen to everybody? I really think that, I always joke that I got the full MD Anderson experience. I got all the chemo. I got the max radiation. I got the max reconstruction, and I am in my late 50s now, and so I just I don't know if it has to do with my body, not bouncing back, I don't, I don't know. And I will say that I didn't eat great during chemo. What I did find out is that more than two weeks of radiation destroys your digestive system for the rest of your life. And that's just radiation, that has nothing to do with what chemo destroyed. And, so I have changed most things about my diet. I eat a very weird diet now. No uncooked foods. What we're trying to do is to heal my digestive tract.

Eva
22:07
So no raw food, no.

Kristen
22:09
Fruits. I can eat raw fruits, some raw fruits, but not like salad. And nuts need to be cooked. It's an Ayurvedic kind of thing. And so, yeah, I mean, it's, I am losing weight on it, which is great. It's just, I am doing a lot to heal this first and like no cold foods like water, is at room temperature. No smoothies, no ice cream that if you think about it. The things that like I used to like bubbly water because of the good burn, the kind of I would get from it, you know? But I can't have bubbly water or anything like that. It's really just I am just trying to heal all of my digestive tract and then I can ease those things in possibly.So I don't know if I am an anomaly or if it's normal. I haven't talked to a lot of people who had the same stage as I have had and have had all of the treatments. But I have heard women talk about their feet ,had their balance, all of that. The balance stuff does have to do with the combination of medications that I am taking, and so I am trying to get off of some of the antidepressant stuff in a very slow way because that combined with the Arimidex is affecting my balance. So in general I am doing great. You know, we're talking about all of these things that have happened but, I'm gonna backup, the scans, those are pretty normal, I'll be honest. And, you know, the scanxiety is real and it's, if you think about it, it's trauma. You know, I hadn't had a biopsy that came back fine. I hadn't had an MRI that came back fine. And so now I have. And so I have that baseline to work from going forward. whereas I didn't have that before and I was fresh off all of the surgeries, all of the, you know, still. I mean I was showing you earlier, you can still see the radiation burns. It's definitely darker on that side. And that's the small piece of this, but I will say, the skin is so sensitive to even touch it hurts still. And it's been a year and a half. So I mean, these are all things that I think a lot of people go through. I didn't realize that not moving was affecting me that much. I was just trying not to fall, and everybody talks about, you need to walk, you need to walk, you need to walk. I get that. But when I walked I fell and this last time I fell, I actually broke bones and my bones are brittle now because of the Arimidex, because of the estrogen blocker.

Eva
25:08
A girl just ate it on the treadmill at Orangetheory the other day. I was like, you probably shouldn't walk.

Kristen
25:15
Seriously. All of that to say, I don't have confidence that I can live alone anymore. Hmm. And I am not trying to be dramatic. My feet are getting better. All of that's getting better. It's just that if I were to fall, I need to have somebody around. <laugh> My friend Jeff for Christmas, 

Eva
25:39
Life Alert?

Kristen
25:45
No, but I do have a lanyard that says, fall risk, a little pin, and then he got me the hospital socks with the treads on the bottom. Yeah. Funny Jeff, funny. I have to laugh about it. I have done enough crying about it. You know, I did that before and I look at it now, and I am, you know, my roommate is upstairs, and there's a beautiful dinner waiting. She loves to cook, and so I really am fortunate. But the reason that I am that I moved again really had to do with, I didn't feel confident, living alone anymore and I had the opportunity to live with these two beautiful women.

Eva
26:25
Did you have to break your lease? Were they cool about it?

Kristen
26:29
They were cool after I got him a doctor's note.

Eva
26:32
Oh.

Kristen
26:33
Mm-hmmm. And <laugh>the doctor's note actually said, because what ended up happening is that my roommate basically bagged out was like, "Yeah, I don't think I am gonna do this”.

Eva
26:44
Oh. 

Kristen
26:45
I was like, "Well that's not cool, cause you're in a legal binding contract with me until next May. So you can either pay it one full you know, one installment or in the next nine installments". And yeah. And so then I had this opportunity and went ahead and made that happen for him too. But I had a lot of hoops to jump through because it was a $6500 reletting fee and got out of that. But I don't know where it is. I will have to find it. The note that my doctor wrote was basically that I needed round-the-clock. <laugh> round-the-clock care. <laugh> Well, she kept seeing that I was falling all the time, so she's like, "Well yeah she needs round-the-clock care".  <laugh>

Eva
27:30
That's good. 

Kristen
27:32
I know. You know, and Sammy's, he's going to preschool, and so I have three mornings a week that are, that I have off. So I have been doing some teaching online and actually just recently launched my own teaching and consulting company. And I have my first client that I saw this past weekend and so you know, I am I am going back to what feels good and being with kids, the online teaching. It's okay. Right. You know, but being with the kids is fun, and they get my jokes which is amazing. But anyway, what else is going on? I don't know. I am happy. I have a very different, I've a very different outlook probably than when we talked last, you know.

Eva
28:21
You do. You're like a completely different person right now. 

Kristen
28:21
Really?

Eva
28:25
Yeah, you're so much you're back to the usual, you're my normal Kristen again.

Kristen
28:29
Oh, I love to hear that. 

Eva
28:33
It's, you're like, all shiny and sparkly and happy. And you're safe. I can tell that you're safe and you're, and not in such a vulnerable place. And that probably was just the thing that needed to happen. 

Kristen
28:47
Yeah, completely. And you know, in the places that I lived, like when I lived in my place in Del Mar, I really I needed to have people around me. And I didn't really realize that when I move there. But you know, I think the difference is, Eva, my chemo toenail has grown back. <laugh>

Eva
29:05
Oh.
 
Kristen
29:05
It's back. Like yeah, looks like a regular toenail. 

Eva
29:08
Well, that has to be the difference.

Kristen
29:10
That is the difference. And I have a little bit of hair. And I know you think it's the wrong color, but,

Eva
29:14
It's really pretty.

Kristen
29:17
I do have a little gray that's showing, but I do have some curls in the back and I haven't done a lot to it, but I do feel extremely safe. And, I don't know, the, the route that I take to work, I am in the mountains, kind of, and so when I get on the highway the sun is coming up over the mountains to my left and there are palm trees. 

Eva
29:45
I have been seeing that in the morning too and it's so gorgeous.

Kristen
29:46
Isn't it so pretty? And then there are shadows of a palm trees or, you know, outlines of palm trees. So you're seeing the whole thing. And the time in my life, when I felt most safe, aside from right now, was between the, the years of probably 14 and 20. And that's when I was living in Ramona. And I grew up out here and hung out in these mountains. And it just feels like home again, and I am 11 miles from my nieces. And my sister, and I am only a half an hour from the beach. And so I don't know. It's just I feel really good and I started taking some classes on how to teach meditation, and I just feel really centered and it's, you know, my community here is beautiful.

Eva
30:44
Okay, so did we cover all the bad things that happened?

Kristen
30:49
<laugh> Probably 

Eva
30:49
No more bad things. It's a new year.

Kristen
30:54
 Oh, no. That's the thing. I think that was. Yeah, that's the thing. I have had every scan in the book. I have had biopsies, I have had it all. My, oh, my lymph node has resolved. The CT scan showed that my lymph node resolved.

Eva
31:08
So longer shady. 

Kristen
31:08
No longer a shady lymph node, Mm-hmmm. All good. So yeah. Um, yeah, everything's everything's good.

Eva
31:21
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Kristen
31:36
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Eva
31:51
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Kristen
31:53
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Eva
32:14
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Kristen
32:14
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Eva
32:25
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@the axis.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.