Eva Sheie (00:08): You're listening to Breast Cancer Stories. I'm your host, Eva Sheie, and my co-host is Kristen Vengler. This podcast is about what happens when you have breast cancer, told in real-time. Eva Sheie (00:32): So it's been a few weeks since we've talked and I think you've had two more chemos. Kristen (00:37): Right. Eva Sheie (00:37): I just want to hear how you're doing. Kristen (00:40): I feel good. We had four sessions over eight weeks of the AC chemo, which was like the real harsh stuff. And then on to 12 more weeks of Taxol for a total of 20 weeks. So I finished the last dose, infusion, of the AC chemo on February 22nd. I don't know why, but it was rough. I felt more nauseous than I had before. Just didn't feel like myself, way more emotional. But my oncologist, she said, this is kind of a celebration. It's kind of a graduation that you made it through this. And she said, I looked at your labs and you're strong. And she said, you have anemia and you have some immune system stuff, but your heart, your lungs, your kidneys, your liver, all of those things are good. And she's like, so whatever you're doing, keep doing it. It's great news. The tumor is on the outside as well. Kristen (01:36): And so it's kind of a nice little gift to her that she can measure, see the tumor on the outside and see if it's shrinking or not to kind of get a gauge of what's happening on the inside. And so she measured and she's like, "It's not shrinking". And I was like, "Is it getting bigger?", she was like, "No". And I was like, "Okay". Kristen (01:54): And I could see that she was a little bit frustrated, but that was kind of the only down part. And then I just didn't know what to expect from the Taxol. Like, I kind of got used to the routine of the AC chemo because if my mouth felt sore or a little bit raw day 10 after chemo, the first week, that happened the second session, the third, the fourth. So I knew how to kind of manage all of that. And so with the Taxol, it was like a new routine. This past Monday, March 8th was the Taxol. Kristen (02:29): And when I was at the appointment on the 22nd with my oncologist, you know, the last AC chemo, I said, "Well, so what should I expect from the Taxol?" She's like, "Well, have you gotten the note about the booties and mittens?" And I was like, "I haven't gotten the bootie and mitten memo, but okay". And so she said, this big, long thing about Taxol, and the big deal with Taxol is it can cause permanent nerve damage, or neuropathy, in your hands and feet, especially. Kristen (02:57): And, so like, I'm reading, and it says, yeah, it's like, maybe you can't button your shirt permanently, or maybe you trip over your feet. So that's not an option at 56. Eva Sheie (03:07): Yikes! Kristen (03:09): I know. So what they have you do is, I literally have these ice mittens. And so you're in it for 15 minutes before, the chemo is about an hour, and then you're in it for 15 minutes afterwards. It was the weirdest feeling. All of a sudden my body just starts itching everywhere, and I couldn't scratch everywhere. Eva Sheie (03:31): Okay. So you've got frozen mittens, it's like having your hands in snow- Kristen (03:37): Yes. Eva Sheie (03:37): And your feet in snow. Kristen (03:39): Yes. Eva Sheie (03:39): And then your whole body starts itching? Kristen (03:41): Yes. Eva Sheie (03:43): That is some fresh hell. Kristen (03:45): It was, it really was. And I just sat there. I couldn't do anything. And I told the nurse, everything was itching. And she said, it'll pass. Eva Sheie (03:55): How long did it take? Kristen (03:56): 20 minutes. Long, 20 minutes. Eva Sheie (03:59): Oh man. Kristen (04:00): And then the bottom of my right foot kept itching. And so I just kept rubbing it along the other foot, but it was just the weirdest thing. At first I was cold, so I had my hat on and then my head starts itching. So I'm sitting there with these gloves and I've got one of them on my head, just like, ah! Kristen (04:20): My bald head, right! Who puts ice on your bald head. Right? But that was a new, like you said, a new kind of hell. Sure was. That was, I would say, the most uncomfortable of the treatments and the others, I didn't feel particularly comfortable, I felt nauseous, but it wasn't like a big physical response like that. Eva Sheie (04:44): So that's going to happen every time? Kristen (04:46): Mm-hmm (affirmative). Eva Sheie (04:46): Okay. Well, we're ready for it now. Kristen (04:49): Sure. I am, I guess. I am. That's why I made sure that I got two sets of everything, because I thought I'm going to get these as cold as possible. And as the coolness wore off the itching got worse. So I'm just going to try to keep the gloves and the booties cold. Eva Sheie (05:10): So you're at work today and you're nannying and the child you take care of, how old is he? Kristen (05:17): Fourteen months. Eva Sheie (05:18): Fourteen months. Okay. I'm curious how he reacted to your head. Kristen (05:23): So the week before I shaved it. And so when I got there, he's like looking at me like something's different, but I wore my hair up a lot anyhow, but he was kind of studying it. And so then when I showed up with my head shaved, he did the same thing, but it was like checking it out, looking all around. And then of course my earrings stood out more. So he was playing with the earrings and then I let him touch my head and he kisses it. He gives kisses on my head all the time, which is super cute. Eva Sheie (05:54): But now he's used to it? Kristen (05:56): Oh yeah. We'll be reading and we'll see somebody in a book with a hat. And if I have like, one of my beanies on, I'll say hat and I'll show him in the book. And so then every single time he wants me to put it on him. So sometimes we cruise around with little beanies on. Eva Sheie (06:10): So have you been able to keep up with him pretty well or- Kristen (06:13): Yeah. Eva Sheie (06:13): Have you had to- yeah? That's good. Kristen (06:15): I've lost some time when, for chemo days obviously, or when I haven't slept very well at night, or I'm feeling really sick in the morning, I'll come in a little bit later. It's a really low stress job. So I'm so lucky and just- Eva Sheie (06:30): Mm-hmm (affirmative). Kristen (06:30): -fortunate that I have these people that are kind and I mean he's easy, you know, he's walking and...Sometimes I'll take him for walks and they live in a hilly area. So, that gets a little bit tiring sometimes in the stroller, but I feel more like myself, even after the itching, I don't feel as nauseous. I will say last night was the first night that I had more than three or four hours sleep since the first Taxol chemo. I don't know if it was the steroids. I don't know if it was the new drug. Eva Sheie (07:03): Does it feel like your body woke you up or your mind woke you up? Kristen (07:07): Great question. Think my body woke me up first and my mind kept me awake. Eva Sheie (07:13): Darn mind. Kristen (07:14): I know. Cause I woke up sweating and got a kind of different living situation. That place that I'm at, we worked a deal that I'm moving, but the owners get the place back from April 15th to June 1st. Eva Sheie (07:28): Yeah. Kristen (07:28): Who knew I was going to have chemo, right? Eva Sheie (07:30): Oh my gosh. Kristen (07:32): I know. It's not a long, long-term solution, but I don't think I really want to move right in the middle of all of this. So there's a good friend of mine who has a place in Del Mar and she has an Airbnb place I'm going to stay, which has a beautiful view. And so that's taken care of. It's just that my mind has been fluttering about... Do I need to move permanently? And all of that. Eva Sheie (07:54): It's a lot of change to process. You have to work through it. And I think we work through stuff when we're sleeping a lot. And then when your body wakes you up, it doesn't mean your brain stops working through whatever the problem is. Kristen (08:07): Very, very true. What is it? First world problem, really? That I have to move from one place near the beach to another place with a beach. Come on. Eva Sheie (08:15): That's a good perspective. Kristen (08:18): Again, I have all kinds of love and support here. When I did see my oncologist, this last time, she measured again and she's like, "it hasn't changed". And I could tell she was frustrated and she's like, well, we're starting a new drug. Maybe this one will shrink it some more. Kristen (08:34): But it kind of felt like, well, this one didn't work. So let's try the next one. And in my mind it worked in that it didn't get bigger. She did order an MRI and I have one scheduled for a couple of weeks from now because she wants to see how it looks on the inside as well. Eva Sheie (08:49): Under the surface. Yeah. Kristen (08:51): It doesn't feel any different, but again, it's been what, nine weeks? And it hasn't grown. It's tough because you know, you don't know how fast it was growing before, because we weren't watching it. Eva Sheie (09:04): Right. We have a baby niece who has a glioblastoma. And she was in Seattle Children's for many months, and they finally operated on it and they got most of it and she went back home, and then three months later it was back. Eva Sheie (09:26): I think one of the best things I did was go there and see it with my own eyes, how they were taking care of her, because there's just as an enormous team of people, and she has two nurses to herself. Kristen (09:37): Wow. Eva Sheie (09:37): So her care, I've never seen anything like it. And that actually helped me process what was happening. I didn't want to go there. But I'm really glad I did. And just like talking to you, I think, us talking about this and getting this out in the world is going to help a lot of people who know you and love you. Kristen (09:57): I hope so. Eva Sheie (09:58): And even people who don't know you understand that you still get up in the morning every day and you still go to work and you're still you. Kristen (10:06): Yeah. Eva Sheie (10:07): And you're going to kick its ass. And- Kristen (10:09): Yeah, I hope so. And there's been this interesting progression. It's like at the end of AC and starting Taxol, it's almost like, I don't want to say, I forget that I have cancer, but I kind of do. Even though seeing my bald head in the morning reminds me, I think having embraced how much easier it is to not have to do anything to my hair. You know? Kristen (10:35): And I thought people would look at me and be like, oh, she's a freak or something like that. I mean, people like they'll look when I walk by, but I just walk taller and smile, you know? And I'm like, yeah, I'm kicking something's ass. Or maybe I'm just that girl who thinks I look good without hair. You know, you don't know. Eva Sheie (10:55): It's California. Kristen (10:58): It is California. Yeah. You can get away with anything here. Kristen (11:01): But when I do see myself, like from the back and like a picture or something like that, I think I look like a man. And I'm like, that's so weird, but I've just gotten used to not having hair. So when I look at myself in the mirror, I don't see cancer anymore. I just see myself. And so I think what that is, is growing into...I'm resigning and kind of surrendering that I have this and that all I can do is take good care of myself, and that what's going to happen is going to happen. And it's going to only hurt me if I, if I worry about it. And it's become somehow more automatic to see the positive in things, which I think is really opposite for a lot of people who have cancer. Kristen (11:52): And I know this sounds really weird, but I get to dig deep and really figure out who I am and my strengths and my weaknesses. And I also get to dig in and see, who's really in my corner. And I found a lot of my friends are like, "I really needed to do something for somebody else. Thank you for letting me cook for you. You having cancer helped me get out of myself". Kristen (12:18): And I'm the last person who takes help, you know, me. Like I have such a hard time asking for anything. Eva Sheie (12:24): Stubborn. Kristen (12:26): Well, and I just being a teacher and a mom, and I'm the oldest kid- Eva Sheie (12:30): And capable, yes. Kristen (12:32): And capable, but my friends will not let me go to my appointments alone. They're on call for if I need anything at all. If I want any certain type of food. Flowers show up just randomly. And it's really nice to be able to enjoy those things and not think of how sick I am. I've got the best care. Kristen (12:54): And I don't know, I just, I have such beautiful people around me and I am so fortunate. And so I will say that my quality of life, although people would say you have cancer. And like yeah, but my quality of life is really good. Kristen (13:10): Something that's really cool... There's a friend of mine who does some bodywork. I had a massage with her last Saturday and she really got my blood flowing and everything. For the first time when they did my labs on Monday, my platelet counts went up. My hemoglobin numbers, all of my numbers went up the right way. Eva Sheie (13:30): Oh! Kristen (13:32): And so, this for the first time. And so I'm going to keep doing that. Eva Sheie (13:39): Yeah. Kristen (13:40): The body work that she does is incredible. And I was stunned like a bunch of my numbers that were on the border and way below are like in the normal range. Kristen (13:51): And I think that also the whole foods that I'm eating and I'm giving myself grace with putting on, I think I put on 15 pounds now, which that last 15 was really hard to lose, so I get ticked off at it, but I'm healthy. And when you see me in person, people look at me and they're like, you look healthy, you don't look sick. Eva Sheie (14:10): It's true. You do. Kristen (14:12): Thank you. Thank you. And I'm not saying that I'm super woman and people should do it the way that I do it. I'm just saying that there's people out there to give you guidance, and I'm happy to give anybody guidance with anything that I'm learning. And it's not that I don't get sad because there are nights I cry and I cry and I cry, and I wonder what's going to happen. And then I just think every journey that's been tough for me has had a result of me teaching, somebody, something or many people, something. And whether it's a death in the family, whether it's a divorce, whether it's a job situation, whether it's an illness, there's a lot for people to, to learn. Eva Sheie (14:55): I feel like watching you and hearing your story over the last couple of months, you don't act like this is something that's happening to you. Like you have not acted like a victim for a single moment. Kristen (15:10): I haven't felt like a victim. Eva Sheie (15:12): Yeah. It's super obvious that you don't. Kristen (15:15): I think a lot of that comes from the school situation that I was in, and we won't go too far into that. But you know, it was a situation where I never would have left that job. Had there been, not been the circumstances and it's been three and a half years, and I would not have had the health that I have today because of going to a very low bottom with my health. But looking back, I could see every reason for every step, even though it was incredibly painful when I almost lost my life, a couple of times. And in doing that, I can look back and say, oh, this, this, and this led me to here. And before I got sick, I loved my life too. And I was so grateful that I was able to get to this place. And that I was past that horrible trench of muck where I couldn't breathe. And the situation is still not resolved. Kristen (16:15): So it's not that there was any great resolution to it, except that I have a peace of mind and I get to live life on my terms. And going through something like that made me have to depend only on me. And I had to resign myself, to love the life that I have right now. Kristen (16:37): It can be scary sometimes, being single and having cancer, and wondering if I'm going to die alone... But I don't let myself go there cause I'm not, I'm never, ever alone on this. Kristen (16:47): So the way that all of that transferred into cancer is that there's something at the end of this I'm supposed to know. Eva Sheie (16:53): Mm-hmm (affirmative). Kristen (16:54): And so, if people can pull from those experiences that although you didn't want them to, made you more resilient. But also like my heart's completely out there, you can ask me anything. And if I cry about it, then I cry about it. I don't try to hide anything. And so I don't know if that sounds a little like Pollyanna, but- Eva Sheie (17:15): Mm, no. Kristen (17:17): But that's, I mean, kind of where I've been. Eva Sheie (17:22): Thanks for listening to Breast Cancer Stories. Eva Sheie (17:31): 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. Eva Sheie (17:38): 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.