Day 131: I Regret Not Noticing This Sooner

Eva Sheie (00:08): This is a story about what happens when you have breast cancer, told in real time.

Kristen (00:20): Well, I signed a lease in the summer and knew that the owners of my place, because it's at the beach, it's two blocks from the beach, a cute little trailer place, really great little surfer place. And I knew that the owners were going to want it for six weeks. They just bought it in the summer before. So this is the first time they'd really done that. And I'm sitting there thinking, well, that's not a big deal. I'm single. It's just me and my dog. You know, I can go get an Airbnb for six weeks. It's no big deal.

Eva Sheie (00:50): You didn't have cancer when you signed the lease?

Kristen (00:53): No. I didn't have cancer.

Eva Sheie (00:54): Okay.

Kristen (00:55): Who thinks you're going to be in the middle of chemo when you're moving? So I was moving, literally two-thirds of the way through chemo and with Taxol, which was the second drug, the second chemo drug I was on, the side effects, they build. To top it off, there's no storage in this place. So what I was basically doing is taking my living space and making it into an Airbnb for someone for six weeks and getting the rest of my stuff out. It was my home, and leaving like the cute stuff.

Eva Sheie (01:31): Your own stuff you left there?

Kristen (01:34): Mm-hmm (affirmative).

Eva Sheie (01:35): It would be unfurnished were it not for your things?

Kristen (01:38): Mostly. Yeah. I mean there, the bed was there and there was like a cute bar table. And they had some furniture out on the deck. But you know, we're talking about dishes, we're talking about a television, things that make it homey. And so I went ahead and left stuff there that made it homey. I took my personal pictures and stuff, but my cute thing of shells that meant something to me and cute pictures and stuff I left. And I had all of these 13x13x13 little bins that I got from Amazon. I had nine of them and they fit up above on like a ledge on a bull nosed ledge above the kitchen. And so the first thing I packed was all of my hair supplies because I was bald. And I wasn't going to need those for a while, but it was also like my favorite dishes that I didn't want to have broken or just stuff.

Kristen (02:32): And I didn't pack it to move, because I was just going to take it down and use it again. And I also saw one of those same bullnose things above the closet, in the bedroom. And so I got these super cute little nautical looking things to hold my clothes and to hold linens and my shoes and all of that too. So super cute. So I did that and I got to move to a beautiful place in Delmar. A friend of mine has a garage apartment and was so gracious and it's the most healing place that I could imagine. Just the family, the place, the view, the feel. It was totally worth the work.

Eva Sheie (03:11): So what seemed like it was going to be a horrible situation actually ended up being a better situation?

Kristen (03:17): Oh, completely, completely. I moved from about a 450 square foot little trailer that was long to a thousand square foot garage apartment. It's above a three car garage that had converted to a gym. That's just incredible. It doesn't feel long and narrow and small, even though it's a studio. And turned out to be something that I couldn't have imagined, but it was from the time I started chemo, it was on my mind. It was hanging over me in addition to feeling sick. And so it was, it was quite an undertaking. It was really going through everything. And after I'd finally gotten things settled, then disrupting that.

Eva Sheie (03:57): And you don't have to move again now? You're settled. You can stay there forever?

Kristen (04:02): Yes. Before I moved, I had signed a new lease with the owners starting June 1st to continue my lease. And so then I got here and was joking with my friend. Like, "I don't know if you're going to be able to get me out of here." And she's like, "Well, you don't have to leave." And I was like, "Wait a minute. Let's talk."

Eva Sheie (04:25): Wait what?

Kristen (04:26): Yeah, exactly. wait, wait, say that again. So we talked and we worked something out and then I had a conversation with the owners and they understood. They weren't thrilled, but the rental market out here is, I mean, you can't find rentals. So they had no problem finding someone. But what that meant is that I needed to go and get all of my things out of their place. And-

Eva Sheie (04:51): While they were there?

Kristen (04:52): While they were there, which was very weird. And I didn't know this until about five days before they wanted my stuff out. And so at the same time, I manage to be really sick. These brain things that I'm having, where I can't express myself, that's some of the nerve damage that hasn't been fixed yet and it's supposed to come back. But I have a hard time putting my finger on words that I need.

Kristen (05:19): So luckily I'm not somebody who is super attached to things. I have a few things that mean a lot to me, but it's things that have meaning with my mom's desk or a trunk or a piece of furniture that has certain meaning to me. So what I told them, as I said, "Well, if there's anything you'd like to buy that's there, let me know. And we'll save us both some trouble." And so luckily they bought almost a thousand dollars worth of stuff that was there. It was like a beautiful runner that was brand new. I mean, everything was brand new. And my couch, and TV, and some dishes, and some other, they loved my decorating. And so they bought a lot of the things that I had done.

Kristen (06:03): What was hard, was rounding up people to help me with that endeavor because there were some things that they didn't want. And I ended up giving away the majority of the stuff. It was surprisingly liberating. And it was so cool how, I guess cool is the only thing. Magical. It's a little bit dramatic, but how people come and help you and you don't know how it falls into place. There was a good friend of mine who came over, who has the same organizing brain that I do, and helped me organize when I pulled everything out of the cupboards and told her what my ultimate goal was.

Kristen (06:41): And she was like, "All right, here's what we're going to do." And she helped me get that packed up. And then the next day another friend came with her son and a friend with a truck and we were able to get just about everything done pretty quickly. It was super awkward though, with the owners helping me move stuff out. I had to say goodbye to the place, you know, because it sounds...It sounds weird, but that was the place that I landed, you know? And I was finally like, wow, I have a journal that four years ago, I wrote in it five times every day for a month, I'll have a house at the beach. I'll have a house at the beach, I'll have a house at the beach, I'll have a house at the beach. And I did, I still do. I mean, I'm not on the beach. I'm about a mile, but I mean, this was like two blocks. And so it was kind of like where I was finding myself again. And it's also the place that I found my cancer. That's the shower where I'll never forget it.

Eva Sheie (07:42): Mm-hmm (affirmative).

Kristen (07:43): That's where I came home and just collapsed. And I woke up sweaty and I ate popsicles every night. And it's all those things that, it's almost like when you're pregnant, you remember all those things you did. Well, it's the same kind of a thing, but it's cancer. And it's also the place where I realized how big my support system was, when people would show up with dinner for me every night. And so there was a lot that was there and I get a little choked up just talking about it because when I left the chapter was over, it wasn't one of those I don't feel like I'm done. It was like, okay, in the book, this is the end of the chapter. And I mean, I'll never forget. It's burned into my brain.

Eva Sheie (08:29): You had a couple other big things happen.

Kristen (08:32): So Scripps Hospital, it's a network. It's huge.

Eva Sheie (08:37): Huge.

Kristen (08:37): Right? And I did everything in the portal. They're so good with their portal with setting up appointments and like all that, you can send messages. It's a beautiful thing. And they were hacked. And it took a month. It was ransomware too.

Eva Sheie (08:52): You did?

Kristen (08:52): Yeah. It just came back up. Everything was manually charted. So I had four chemos left. And I got a call three hours before chemo that my appointment was canceled because of the hack. And I said, "Oh, well, what does the hack have to do with it?" And they said, "Well, we don't have the amounts of chemo." So like they didn't have the information.

Eva Sheie (09:14): Nobody wrote them down on a piece of paper.

Kristen (09:17): Right. They were in the computer. Right. And so when the portal was hacked, it was patient records. It was anything that they could access. Like when you had labs done, the lab literally had to type it out and send it up. And so it was quite an ordeal.

Kristen (09:33): And so I appreciated that they didn't want to just put chemo in my veins and take a guess at what I had, but it was a challenge to get appointments. And plus you couldn't get through on the phone to people. And it was happening to everybody. And I'm a big planner and I wanted to know, because I've been looking at May 24th, May 24th, May 24th. Oh my gosh. That's my last chemo. Like since January 11th, May 24th was the big day. And then all of a sudden I'm like, I got to make one up, because my doctor told me that I needed to make one up. And I was like, all right. And so I didn't actually have that appointment in stone until three or four days beforehand. I knew it was going to be around that time. It was right after Memorial day. So it was supposed to be like June 1st, but it was June 2nd.

Kristen (10:25): And I was so frustrated at first. I was like, "I have to wait an extra day. Are you kidding me?" Just upside down. You know, I'm like really it's a day. But what was really cool is that my brother and sister live here in San Diego and my brother is in law enforcement and he was not able to take me to chemos because he's always working Mondays and Tuesdays. And so this was a Wednesday and I hadn't seen my brother in a couple years because of COVID and stuff. And so I texted him and I said, "Would you like the pleasure of taking your favorite sister to her last chemo appointment?" And oh, and ever since chemo is on the plan, he's been like, "I can't wait till you ring that bell. I can't wait till you ring that bell." And so he couldn't come up because of COVID, but he got to take me on the day I rang the bell.

Eva Sheie (11:12): Oh, that's so great.

Kristen (11:14): It was super special. It was one of the highlights. Because all through COVID, we couldn't have anybody up there with us, but it was very cool that through every chemo I had people taking me and picking me up. And sometimes it was different people. It was a cool little cornucopia of people that came and helped. And it's like a pretty mosaic of people coming through for me. And I never had to do anything alone, even though I was alone in there.

Eva Sheie (11:41): Yeah.

Kristen (11:41): So the hack was like a month and I couldn't get a surgery date. I went and saw my plastic surgeon. He's like, "Normally I can give you a surgery date, but we're down." And so when I went to see my plastic surgeon for the first time for our consult, he said, "Okay, so," and I go, you know what, it's stage three B it's in the right breast. These are the sizes. This is the size of the last MRI, the data. I mean, luckily I have that. I'm conscientious about all that. And I had all that information. He was like, "Thank you so much." Because he didn't have that information. And I'm sure it's hard to do a consult when you don't really know what you're looking at.

Eva Sheie (12:22): Yeah.

Kristen (12:22): It's good to know where and how big the tumor is going to be, like what you have to work with later. So I can't imagine what it was like for those guys. Every time someone would say I'm so sorry, I'd be like, "I hope people aren't mean to you." I mean, it is frustrating on my end, but I can't imagine what they had to look at.

Eva Sheie (12:40): Yeah.

Kristen (12:41): The pieces to me that were harder were like, I would go and get my port accessed an hour or two before my chemo. And then they would do labs. Well, what was happening is because the lab had to hand type out the information, it was taking three and a half hours to get the lab. So one day I was there until like 6:30 or 7:00 at night. And so what I started doing is going the Friday before or the morning of, and getting those done so that we didn't have to wait. And I wasn't a pain.

Kristen (13:16): Because the thing was, my doctor had to look at my labs and release the meds. And I had some labs, just speaking of labs, I had a couple times where my liver numbers were high, but overall my doctor was really pleased because actually my anemia at the end of Taxol was better than it had been halfway through. And usually it builds. And so while I gained between 35 and 40 pounds through this whole thing, between the steroids and eating more carbs and whole foods-

Eva Sheie (13:50): Comfort food.

Kristen (13:50): Yeah. It was comfort food, but it was also like, I didn't eat a lot of beans before. I didn't eat a lot of fruit like grapes and berries and those kind of things that are heavy carbs. But those were the things that felt better to my stomach.

Eva Sheie (14:04): Yeah.

Kristen (14:05): I tried to give myself grace, but it's really tough when you have a bald head, because usually if you have long hair, you can do something to balance out your butt. You know?

Eva Sheie (14:14): I have no idea what you're talking about.

Kristen (14:16): You know what I mean? I laugh about it, but that was actually a harder piece for me than having no hair, was learning to give my body grace. And I finally was like, look at what it's doing. Well, I started getting acupuncture as well and started doing reflexology and then I have a beautiful massage therapist who does incredible work. And I was doing all of these different things and all of it contributed to having really good health. And my acupuncturist told me, I said, "What's going on with my hair? It's growing back." Oh, because... So I'll go back to that. So in skipping May 3rd, my Taxol for May 3rd, my hair started growing back, which my oncologist said it could fall out again or whatever, but it thick.

Eva Sheie (15:10): Yeah. It looks great.

Kristen (15:11): It's crazy. I look like GI Jane.

Eva Sheie (15:13): Mm-hmm (affirmative). Definitely.

Kristen (15:16): Totally. Right. Just got to get some mad triceps.

Eva Sheie (15:20): Or just put on a camo jacket. Forget about.

Kristen (15:22): There we go. There we go. But I had to learn that this body that I'm shaming on the outside is what is really keeping me afloat and keeping me alive. And a lot of it was the hard work that I'd done to get healthy and to feel better and to take the weight off that I needed to. And it wasn't about vanity. It was just more about my clothes not fitting. And I'm not going to go buy big clothes, because it was my way of trying to control that this cancer is temporary, also. This weight gain is temporary, this chemo is temporary. This cancer's coming off and this is not a long term thing, which that's a whole other journey is realizing that this is not a quick thing.

Eva Sheie (16:11): Do you have any sense for like when people are at this point they're done with chemo, do people know when they get to this milestone, if they're going to make it or not make it?

Kristen (16:22): No.

Eva Sheie (16:24): You still don't know that?

Kristen (16:25): Oh, I have no idea. So my recipe that they put together for me was based on the staging of my cancer and also the receptor and estrogen positive, progesterone neutral, and HER2 negative, which is what you want. That's great. That's more treatable than other receptor combinations. And so they also had to look at my history and my age and all of those things. And they came up with this recipe. And the big reason for doing chemo first, because everybody's like, "Why didn't they do the mastectomy first? Get the cancer out of you? Why did they do in this order?" It has to do with the skin involvement of the tumor. And my question to my oncologist at the beginning was, "Why are you trying to shrink it when you're just going to take it off?" And what she said is, "I'm trying to cure your cancer. I'm not just trying to save your life." She said, "I'm trying to kill any micro cells that might be floating around because if we don't do that, it's immediately stage four."

Kristen (17:29): So I don't know if I'm going to make it. I don't know what my chances are. I haven't looked far into that, but while they're doing the surgery, they're going to do something called a auxiliary sentinel node mapping and biopsy. So they're going to go in and they're going to actually inject radioactive material into the tumor. This is super cool. And he has a geiger counter to do the radiation. And so he's going to shoot it in and then see where it goes. And then he's going to remove those lymph nodes and do the biopsy right there.

Eva Sheie (18:04): Oh.

Kristen (18:06): Yeah. And right on the spot. And so depending on what the outcome of the biopsy is, will depend on whether I keep my lymph nodes or not. So if there is cancer in the lymph nodes, then it becomes three C because it spread to the lymph nodes. He says a lot of people have a problem with lymphedema. And we used to just go in and remove all the lymph nodes just in case, but we try not to do that anymore because of complications and all of that.

Kristen (18:31): And so he did say that sometimes because of the place of my tumor and because of having chemotherapy, the mapping doesn't really work very well. And so if they're not able to get a good read on the mapping, that they will just take them all to be safe and then they'll biopsy them all. So it's one of those things like, I guess they're going to go in and they're going to see where all the cancer is. If it's in another part of my breast, because the MRI has never shown, that's all that we really have to go on.

Eva Sheie (19:02): So there could be none or there could be more.

Kristen (19:05): The tumor is about two and a half centimeters by two and a half centimeters by 1.7 centimeters. So what that really means is like an inch and a quarter by an inch and a quarter by three quarters of an inch. But it's right behind the nipple and areola. And so remind me sometime for us to talk about how this would not have been found, had it not made it to this skin, because it didn't show up on any other scans. It didn't show up on an ultrasound or a mammogram. It only showed up on the MRI and the biopsy.

Eva Sheie (19:41): And to your eyes.

Kristen (19:42): To my eyes. Yeah. The big issue is the skin involvement, right?

Eva Sheie (19:46): Yeah.

Kristen (19:46): That's what makes it more serious. But the skin involvement is the only reason I found it. And that's the only reason they decided to do a biopsy is because it was on the skin.

Eva Sheie (19:54): Yeah.

Kristen (19:54): And I don't know how to become an advocate yet of how to help people find this. I keep telling everybody compare them, compare your nipples, compare your nipples. And when I found this, I was in a shower and it just felt different. And I realized the tumor is numb. It doesn't have feeling in it.

Eva Sheie (20:11): And that's not a spot that should be numb.

Kristen (20:13): No.

Eva Sheie (20:19): 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 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. theaxis.io.