Kristen Vengler (00:03): I'm Kristen Vengler, and our mission with this podcast is to help you and the people who love you through the shock of diagnosis and treatment. Eva Sheie (00:11): I'm Eva Sheie, and the incredible woman whose story you're about to hear is a nurse practitioner in San Francisco who has dedicated her life to caring for patients more vulnerable than you can imagine. Kristen Vengler (00:23): Her name is Natasha. This is a story about what happens when you have breast cancer told in real time. Natasha (00:34): As I'm heading towards the end of my chemo, number six is next Wednesday, today's Thursday, so less than a week to wait, I was able to get a much better hand on nausea after my admission to urgent care with the last couple of cycles. I actually took myself into urgent care to get hydration about a week ago, because I could see things were going south and I was feeling dehydrated. I also have an Apple Watch and I was just watching my heart rate go up and up and up. That's a sign of pretty bad dehydration. I was in the 140s, 150s and was trying to drink enough to make it work. I was just like, no, they've made it so easy. (01:19): Just call up and say, "Hey, I'd like to come in for some hydration." They're like, "Okay. Come in an hour or so." But the hardest ongoing thing that I have not found anything to kick it is my taste buds have changed so significantly. I think we maybe talked about this last time, but it's got almost worse, that not only does it now not taste good, it tastes kind of disgusting. I'm just throwing so much food away. It's really hard to find anything that I can eat. I'm sort of sticking with just rice and beans, because at least I've got some protein from the beans. I'm with a friend last night and we were just sort of talking about nutrition and he was like, "Oh, you should do juicing." (02:03): I was like, "No, I can't take all the sugars from the juicing. Because of the steroids that I get for the nausea, I'm sort of borderline diabetic at this point. It'll change when I stop taking the dexamethasone, but I don't want to push it over the edge with juicing." He was like, "What about vegetables?" And I realize I'm not eating fresh food. I'm eating beans and rice. If I can't be bothered with beans and rice, whatever DoorDash can bring, which is not vegetables. I have not embraced the healthy lifestyle at this point. Orange chicken from Panda Express the other day was exactly what I needed. Kristen Vengler (02:45): Orange chicken for the win all day, everyday. Well, you know what I will tell you, and I hated when people told me this when I was in chemo, is that your only job right now is to make yourself comfortable. I think at the very beginning, before you started your chemo, I said treat yourself like a princess. I know it's easier said than done and not get down on yourself about the way that you're eating. (03:07): But if you can make a smoothie that's palatable with some plant-based protein powder and some kale and some fruit and switch up kale and spinach, because you don't want to do too many in a row with those, but that... I mean, I know that you're watching your fruit intake, but if there's any way that you could do something like that, that's a turbo charge. Natasha (03:30): Actually that's a really good idea. Kristen Vengler (03:35): If you're not tasting stuff anyhow, maybe it won't taste like crap if it's mostly vegetables. Natasha (03:41): And also I can chug that down even if it does taste bad. It's when I have a plate of food and I just look at it. Kristen Vengler (03:48): With a straw, I can suck anything down pretty quickly. Maybe you can throw some peanut butter in there. Natasha (03:54): Ooh, I like your thinking. I mean, it feels silly to be approaching number six and now thinking about that, but also I'll be on the hormone blockers as an IV until 21st of December. That's my end date. That was a surprise to me that it was so much longer. Kristen Vengler (04:12): Can you talk to me a little bit about that? Natasha (04:14): Yes. Because my tumor is HER2 positive, I can't take the pill that the ER, PR positive people take. It has to be an infusion and it's every three weeks. Really next Wednesday it's like, yay, chemo's over. The chemo's over, but I'm still going to go every three weeks until December the 21st. It's a little bit of a fake celebration. I've been thinking of my treatment in four chunks. There's the chemo, then there's the surgery, then there's the radiation. I thought then after radiation is when I would start back up on the hormone blockers. (04:53): But no, I got my schedule. I have chemo on Wednesday of next week. And in three weeks, the following Wednesday, I get too fewer drugs, but I'm still getting two drugs to go until the whole year. That was a bit of a... Kristen Vengler (05:12): To talk a little bit about it for people who may not understand, we're talking about the ER, PR, HER2, when you get your diagnosis. You know more of the technical terms on this, Natasha, so pipe in. They test to see if you're estrogen positive or negative. That's your ER, right? To see if you're progesterone positive or negative, that's your PR. And then the HER2. You just learned what that stands for. What was that again? Natasha (05:38): It stands for human epidermal growth factor receptor 2, HER2. Kristen Vengler (05:45): It's a protein basically, right? Natasha (05:47): Well, it's the food that your cancer eats, I mean to break it down to its basic. The idea is if we don't feed the cancer, then it shrivels up and dies. Kristen Vengler (05:56): Sure, right. But the HER2, what you're talking about is the infusion that you're getting for a year. It's kind of like there's a little part of me that's a little jealous that you get to be finished with that piece at the end of the year, but I'm so not jealous that you're still going for infusion for an extra six months. Those are all to limit recurrence. The tumors out of me. The tumors going to be out of you. What that's for is to limit the recurrence of microcells feeding on any of those things. Did I say it right? Natasha (06:34): Yeah, absolutely. A lot of recurrence is in the early days because maybe there's one cell and it went dormant for a bunch of months and then it starts getting hungry and looks for its HER2 or its ER or PR. That's why it's continuous from now because there's a chance it could recur in 10 years time. But the recurrence they're most concerned about is soon, in the first year or so. What I realized goes along with that is I've got this port until December the 21st and it's a half day. (07:12): Thinking about going back to work and like, okay, so I'm still going to have to be the cancer girl who's like, "Oh, I need half a day off." I can't find a pill version. I think there's a subcutaneous version that's a little faster of the Herceptin, but I think it's outrageously expensive, so if I'm going there for labs anyway. Kristen Vengler (07:34): And to be clear, it's not chemo. Can you get rid of the cold cap at least? Natasha (07:38): Yes. Get rid of the cold cap, but it still has a fair few side effects. It's the Guinness Book of Records diarrhea is from one of the hormone blockers. That's going to be an issue. I think I'm managing it much better from the first sort of gurgling. I mean, my bedroom looks like Walgreens. I kid you not. I have so many pills. They know me personally at Walgreens now. There's a lovely lady who's like, "Yay! What cycle are you on?" I'm not a pill naysayer because I'm a scientist and I believe that pharmaceuticals can be kind of amazing, but I was never taking as many. Kristen Vengler (08:19): I know. Natasha (08:19): No. I was on a date the other night, a sleepover date, if we can call it that. Antonio was like, "Oh my god, I've never seen anybody take so many pills." Kristen Vengler (08:32): I know. I know. I had a table that was round that was the place for them. It's a little ridiculous. Natasha (08:41): None of them run out at the same time. It's like one I'll need a refill on Wednesday, then the other one on Friday, and then on Monday. I feel like I'm just constantly going. I feel like a junkie. I'm constantly going for my next whatever it is. Kristen Vengler (08:58): Oh my gosh! Natasha (08:59): Why can't the docs just write us for 90 pills and then we're set for a month? But no, it has to be, I guess, whatever insurance will cover. I'm not sure. Kristen Vengler (09:07): Right, exactly. Natasha (09:09): And then I came across another great thing for the nausea that I wanted to share for people out in the podcast world and probably people have thought about this. Because if I'm just thinking about smoothies at this point, I'm obviously not very on the game. But ginger chews and ginger gummies, unbelievably helpful if you don't want to keep popping pills. Kristen Vengler (09:30): Ginger and peppermint. Natasha (09:33): Yeah. And the ginger, there's a one company, they're called the Gin Gin people or something, which as a Brit, gin is... We start drinking gin in the cradle in England. Ginger gummies, they were a game changer. Kristen Vengler (09:48): I had friends who knew about them, and I had stacks. Stacks. When I moved, I got rid of a bunch of them. I should have sent them to you. But yeah, I had friends who were in the know when I wasn't. To recap, you've done five? Natasha (10:01): Done five. Kristen Vengler (10:02): Four and five were palatable, if PMO's ever palatable. Natasha (10:07): Yeah, they were. I mean, the game changer I think was using Zofran, which is the backbone of the nausea treatment. And then putting me on olanzapine. Actually it's sort of an antidepressant from what I understand, known as Zyprexa, or an antipsychotic. It's just made the world of difference. The nausea hasn't gone away, but I haven't had... I don't remember the last like feeling sorry for myself in bed thinking this will never end day, which was where I was for two and three. Again, the message is like, you don't have to put up with feeling unbelievably crappy. There are other regimens. Have your oncologist think outside the box because that really, really helped. (10:54): And also the nurses. The infusion center nurses are a mine of information. They can't prescribe it, but they spend hours talking to all the patients about all the things. They were the ones who were like, "No, it doesn't have to be this. Go in." I'm a nurse. I should know that. But it's like I feel less and less like a nurse and more and more like a patient as time goes on. Kristen Vengler (11:16): Well, I like that you're able to step out of that nursing role, because we've talked about that, how people kind of take it for granted that you know. I'm glad that you're getting to be cared for as a patient would be, as opposed to people inferring that you know what's best. Natasha (11:32): I mean, you just put that so well. I haven't sort of thought it through to that, but yeah, it's been important to me. Every now and then, I can tell that I'm being treated as a nurse, but it's partly because there's a common language and we can talk. It's helpful and gets to the nut of the issue much faster. But I'm realizing, again, I've been very focused on next Wednesday being my last chemo. Not that I feel like I've got chemo down, but I've kind of figured it out how I can get through it over the past six cycles. (12:09): But that's just chapter one, I'm just realizing, that closes. I don't know what my surgery's going to be like, and then that chapter will close. No idea what radiation's going to be like, then that chapter will close. It's just like there's all the unknowns of the next treatment modality. Surgery could be completely straightforward, could get an infection, could be a nightmare. Kristen Vengler (12:33): I didn't mean to bring you down. I'm sorry. Natasha (12:36): No, no. I mean, it's the reality. It's so silly, given that I can't taste anything, but I've booked one of San Francisco's nice restaurants to go to on Wednesday night to celebrate, which I'll do anyway because I'll take any reason for a celebration. It's also then it's the countdown until my surgery. It's interesting, my meeting with the surgeon was maybe three minutes on a Zoom, and then I read the after visit notes where obviously they're sort of cutting and pasting from various other things. There's some things in there that I was not told in my surgery. I'm heading for a lumpectomy unless things change. (13:13): I didn't know I would end up with drains from the lumpectomy. There was a strange comment about losing sensation in the inner arm as a possible side effect. I was like, nobody really went over any of this. I mean, it's not that I'm going to say no to surgery, but there's a bunch of unknowns. She's like, "Oh, it's same day surgery. You'll go home the same day." Well, I also went home the same day from my ACL and I was a wreck. Friends will hook onto that, the whole "you can go home the same day." I think you go home the same day from a heart transplant these days. I have no idea. Kristen Vengler (13:48): Pretty much. I go back to the interview with Theresa and when she was talking about how, this really resonated with me, she felt like as a nurse that, yeah, you lost your hair during chemo, but we saved your life. Yeah, you can't walk because of the neuropathy and the damage from chemo, but we saved your life. I think a lot of people think, I'm generalizing in the medical industry, but it's a day surgery. (14:15): Yeah, you might have some loss in sensation in your arm. It happens. It's a chemo thing. Well, I have to say that I have a new appreciation for having right side breast cancer versus left because of all the things people have told me that have happened to their... The problems that could come with their heart because of having left sided radiation. Natasha (14:36): Oh boy, I hadn't even put that together. Yeah, mine's right sided too. One of the chemos that I'm getting is really hard on the heart too. That's why they keep doing echoes on me as well. Kristen Vengler (14:48): The AC was supposed to be hard. I think that's why they did the echo. But my echo came out perfect, which is great. Which drug is yours that's the hard one? Natasha (14:58): I think it's the carboplatin. Maybe. I'm not sure. I just assume they're all doing something. Kristen Vengler (15:06): There's one that they said you could only have a certain amount in your lifetime or you would have heart failure, and so I'm guessing that's probably what it is. What's coming on the 15th, in six days, is your last chemo. Natasha (15:22): Last chemo. I mean, I'll keep seeing the same nurses for the infusion, but the medical assistant who's helped with the cold caps, I really want to get her something special as a gift. She's been so diligent. Once I'm done, there's a three hour cool down because your hair, it's literally frozen, and so we have to do this cool down. It's often towards the end of her shift. I know she's stayed longer sometimes to make it happen. I'm really sort of putting some brain power into what's a nice gift to give her. Kristen Vengler (15:58): Oh, that's sweet. Natasha (15:59): She's really worked hard. Kristen Vengler (16:01): Maybe a pampering something. Natasha (16:03): I was wondering about that. Kristen Vengler (16:04): Like a spa something that she would go. If you had it to do over again, totally would do the cold capping? Natasha (16:13): I would. I really would. I don't know if we talked in the last episode, but that's another one of those insurance company things that I think it should just be covered. I'm not sure how we can change that. But one person can change things, so let's see what we can do. Kristen Vengler (16:33): I know, right? I feel like having gone through chemo during the pandemic, I didn't have to worry about my hair. But if I were teaching, there's no way that I would've walked into an eighth grade classroom with a bald head. For no other reason, mental health, it should be covered under mental health if nothing else. Natasha (16:54): For me, what it's done, and I was talking with a friend the other day who's pregnant and is just starting to show, and she was talking about the difference of showing and not showing that suddenly people think her body is something that they have a right to talk about. I feel the same. I like to share my story, but I share it on my terms with people I want to talk to. I just felt like the people who are going through either with the bald head, which can look amazing, this is not a vanity thing, it's more of a privacy thing. Kristen Vengler (17:30): I think that also there's a piece too that you don't want to look like a chemo patient. Because in that same vein, in a pregnancy situation, people come up and tell you their pregnancy stories. We have about another, what, five, six weeks until you're going to have your lumpectomy. In between that time, you're going to Mexico. Natasha (17:54): I am going to Mexico City with some girlfriends. I'm really excited. I've never been. Kristen Vengler (18:00): That's going to be great. That's a great way to celebrate. Natasha (18:03): I think so. And then Hawaii after when I'm cleared to travel. I'm planning on going to Hawaii after my surgery. Kristen Vengler (18:10): Perfect. I'm not trying to jump ahead, but after your surgery, you'll probably have the conversation with the radiation oncologist, because they usually start radiation six to eight weeks, four to six weeks after. Natasha (18:26): That's the point I think I might go back to work, but we'll see. I mean, I'll do the first week just to see, because a lot of my work right now is in an outpatient clinic. I don't want to schedule patients and then wake up in the morning and feel like hell and have to reschedule. There's nothing more annoying than getting rescheduled. What I want to know is when I go back to work that I'm back in 100%. Maybe having to take half a day here and there for appointments, but that physically I'm back 100%. Kristen Vengler (18:59): Once they do the pathology from the lumpectomy, you'll have a lot of information about what your radiation will look like. Natasha (19:06): I don't know if you remember, my mom had very early stage breast cancer five, six, seven, or eight years ago and she talks about her radiation as if it was just nothing. Kristen Vengler (19:20): You look good. Natasha (19:22): I feel okay. I mean, I know I'm paler than I should be. I'm curious to see what my labs are going to be like. I'm doing okay. I'm sleeping a lot, which is good. Kristen Vengler (19:31): That's good. Natasha (19:31): I'm averaging probably nine or 10 hours a night. Gone are the eight hours. Kristen Vengler (19:36): That's great. I'm excited about your trip. I'm excited about you being finished. Natasha (19:42): Me too. Kristen Vengler (19:43): Was it straight out of chemo? I love that. Natasha (19:45): Straight out of chemo. Yep. Kristen Vengler (19:47): I love that. Natasha (19:47): I'm going to wear that t-shirt. Kristen Vengler (19:51): Yeah, that was awesome. Proud of you. I can't believe you're getting to the end of it. I mean, I can. Natasha (19:55): I know. Nor can I. When I was asking you was it easier or harder, and now I'm through the hard times, but I think chemo was not as bad as I thought it was going to be. Good. Fingers crossed for normal. Kristen Vengler (20:15): Fingers crossed for normal everything always. Eva Sheie (20:20): 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. (20:20): 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 breastcancerstoriespodcast.com/donate. (20:20): 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. (20:20): 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. (20:20): The link to sign up is in your show notes and on the newsletter page at breastcancerstoriespodcast.com (20:20): We promise not to annoy you with too many emails. (20:20): 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.