Sept. 8, 2022

Day 1: Chemotherapy and Cold Caps

Day 1: Chemotherapy and Cold Caps

On the eve of her first chemotherapy infusion, Natasha hauls a pile of new prescriptions home and questions why so much harm must be done to be “healthy” again.

On the eve of her first chemotherapy infusion, Natasha hauls a pile of new prescriptions home and questions why so much harm must be done to be “healthy” again.

After meeting her oncologist Dr. Chen, a specialist in HER-2 positive breast cancer, the clinical trial that originally sounded promising turned out not to be a good fit, leading to a much less invasive chemo recipe consisting of Taxotere, Carboplatin, Herceptin, and Perjeta spaced three weeks apart, but thankfully no need for Taxol.

To save her hair from falling out, Natasha’s dad graciously volunteers to cover the cost of cold caps (thanks Neil!) but the tradeoff is additional logistics, longer appointments on the chemo days, and no guarantee that it will work.

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About Breast Cancer Stories

Breast Cancer Stories follows Natasha Curry, a palliative care nurse practitioner at San Francisco General Hospital, through her experience of going from being a nurse to a patient after being diagnosed with breast cancer.

Natasha was in Malawi on a Doctors Without Borders mission in 2021 when her husband of 25 years announced in a text message that he was leaving. She returned home, fell into bed for a few weeks, and eventually pulled herself together and went back to work. A few months later when she discovered an almond-sized lump in her armpit, she did everything she tells her patients not to do and dismissed it, or wrote it off as a “fat lump."

Months went by before Natasha finally got a mammogram, but radiology saw nothing in either breast. It was the armpit lump that caught their attention. Next step was an ultrasound, where the lump was clearly visible. One painful biopsy later, Natasha found out she had cancer; in one life-changing moment, the nurse became the patient.

This podcast is about what happens when you have breast cancer, told in real time.

Host and Executive Producer: Eva Sheie
Co-Host: Kristen Vengler
Editor and Audio Engineer: Daniel Croeser
Theme Music: Them Highs and Lows, Bird of Figment
Production Assistant: Mary Ellen Clarkson
Cover Art Designer: Shawn Hiatt

Breast Cancer Stories is a production of The Axis.

PROUDLY MADE IN AUSTIN, TEXAS

Transcript

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 (00:22): Her name is Natasha. This is a story about what happens when you have breast cancer, told in real time.

Eva Sheie (00:33): Hey Natasha, it's so good to see you.

Natasha (00:35): Hey, you too.

Kristen Vengler (00:37): Hey. I think last time we talked was before you actually got to meet your oncologist. I think because you're a nurse and because of your experience with all of this, you had kind of an idea where everything was going, but you are now a patient.

Natasha (00:53): I am a patient, yeah.

Eva Sheie (00:54): Did they like your treatment plan that you gave them?

Natasha (00:57): Well, they had a couple of changes they wanted to make. I went along with them.

Kristen Vengler (01:03): I want to hear about the oncology visit. Also, I don't know what y'all want to hear first, the oncology visit, or how are you feeling being a patient?

Natasha (01:12): It's been a really busy few weeks since we last spoke. The oncology visit was actually very reassuring. I loved the oncologist that I'm with and it was very strange. She had a fellow with her, and for those who may not know, a fellow is somebody who's decided to specialize in oncology and it's their very, very last year of training, so they take a pretty active role in treatment, and the fellow was actually somebody that I've worked with a lot. So, it's one of those weird crossovers of my life at this point, but also I really like her and it was two incredible women. I think maybe I had mentioned last time that I'd been originally scheduled to meet with a male oncologist. And I didn't have a big issue with that because obviously, he's trained and experienced and educated, but it actually got changed because I wanted oncologist who specializes in HER2+, and this is what Dr. Chen does, and she was just so lovely and the fellow was so lovely, and there was a way of being a nurse practitioner going into this and knowing them that it really felt like a conversation.

Natasha (02:14): What we all aim for in the healthcare world is the sort of shared decision making, and it really felt like I had a say in what my treatment would be. I don't know if I had mentioned that I was sort of being set up for a clinical trial, that at the time I was very excited about. After I met with Dr. Chen, she explained some of the potential downside of the clinical trial, and within a couple of minutes of listening to her, I was like, "No, thank you," and she's like, "Great. That's exactly what I hoped you would say, but it was your decision to make." Maybe we can talk at a later time about the differences and the actual treatment plan that they put me on, but there was some quite big changes, which I was happy about and just very positive about my prognosis, and it was just a very upbeat appointment, which made me feel really good.

Kristen Vengler (03:02): It was probably unexpected, too. Whenever you hear, I'm going to see my oncologist to find out about my cancer treatment plan, there's no part of that sentence where you're like, "Oh, I'm going to come out of there feeling awesome," right?

Natasha (03:15): Right, and maybe it's partly, she stressed that being a 2A, she's like, "This is a really good prognosis. It's going to be a long year. The treatment is still absolutely looking like a 12 month treatment, but we really expect a really good response to the six cycles of chemo." The biggest change was they switched me to chemo every three weeks rather than every week, which just feels a lot more manageable.

Kristen Vengler (03:40): Sure.

Eva Sheie (03:41): What did you think the treatment plan was going to look like, and then what did it actually look like?

Natasha (03:47): The clinical trial had me with chemo every week for 12 weeks. And then, the dreaded chemo that gets referred to as AC is actually not indicated in HER2+ patients, but that was part of the clinical trial. So Dr. Chen was just like, "No, the best news is you don't have to do those two months of AC chemo," which shortened the chemo time, but that's the one I was dreading just from reading some of the support groups. That's what seems to really knock the stuffing out of people, so I was pretty happy about that.

Kristen Vengler (04:20): They call that one the red devil for a reason.

Eva Sheie (04:25): I remember when we talked, there's a question as to whether you even have to have surgery based on how the chemo is, how effective it is, right?

Natasha (04:35): Yeah, so that's still a question. One of the things I was giving up by not having the clinical trial was the regular MRIs. I brought that up in my appointment, and what was interesting was that she said, "Because the lymph node under my arm is so..." When we say palpable, you can feel it. It feels like an almond stuck under my arm. She's like, "We can kind of monitor it from how that lymph node shrinks with treatment, but they were so amenable. She's like, "If you want a mid treatment MRI, we're happy to do it." This is great.

Kristen Vengler (05:05): Yeah, that's fantastic.

Natasha (05:07): One of the other great things that came out of the meeting is that everything's ready for me to start tomorrow, and I thought I may have to wait a few more weeks just because I know that UCSF gets so busy, but today is a big scramble to get all my medications ready, and I have my port placed yesterday, so everything's happening really quickly.

Eva Sheie (05:28): What meds do you have to take today and what's for tomorrow?

Natasha (05:32): Today they have me taking the steroids, so dexamethasone, also known as Decadron, so I take that tonight, which will be interesting because they basically said you also will have a hard time sleeping because it's a steroid, so here's something to help you sleep. And then tomorrow, a whole slew of meds. I can't even remember what they all are, but mostly focusing on nausea and they want their patients to be very proactive. She's like, "Don't wait until you have the nausea. Just take them." Starting with Ondansetron, the Zofran that everybody knows, and then working the way down with some Lorazepam, some Ativan, and then some Compazine and various other medications.

Eva Sheie (06:14): Have you thought about the logistics of tomorrow and what is that going to look like?

Natasha (06:19): Yeah, one of the things that I did change my mind about which surprised me, but it was sort of supported by the oncology team is I'm actually going to go ahead with the cold caps, not with the penguin caps, but with something called DigniCaps, that I think is maybe supposed to be a little bit better. My understanding is it looks like one of those old fashioned hairdresser thinks that our grandparents stuck their heads under.

Eva Sheie (06:44): Like a dryer?

Natasha (06:46): Yeah.

Kristen Vengler (06:46): So excited to see pictures.

Natasha (06:47): Yeah. It was really sweet. It's all out of pocket and it was pretty expensive and I wasn't sure it was really worth it for five or six months, but my dad offered to pay for it. My dad's in England and he's like, "Oh, I'm looking at a picture of you and your hair is so nice," and it feels like a very dad thing to do, so he offered to pay for it, but I think one of the reasons I decided that was that, they said it doesn't happen very often, but for some women, the hair never comes back. That was more what triggered it for me rather than hair loss for four or five months. It wasn't a big concern for me because there are great wigs. There are super cute caps, but the thought of it never coming back was a little disturbing.

Kristen Vengler (07:28): Sure.

Eva Sheie (07:29): What's your dad's name? Can you tell me?

Natasha (07:31): Yeah, Neil. Neil Curry. Yeah.

Kristen Vengler (07:33): This episode sponsored by Natasha's dad. Thank You, Neil.

Natasha (07:41): Thank you, Neil. Yeah, the logistics of tomorrow get complicated because with doing the cold caps, it means the appointment's much longer. I think I'm anticipating a six or seven hour appointment. I think tomorrow is a little easier because I don't need to do labs. I've had them done already for my port placement, so I don't have to go in until about 10:30. We were just chatting before about the difference between San Francisco, San Diego, and Texas. I don't have a car in San Francisco, so logistics are a little challenging. They do want somebody to bring me home, partly because some of the medications can make me a bit drowsy, but I think in the morning I'm planning on just taking a ride share in.

Kristen Vengler (08:24): Have you heard about this Uber thing? I hear that's from San Francisco.

Natasha (08:31): I didn't want to give them a plug. That's why I said ride share.

Kristen Vengler (08:35): I just started watching the new show on Showtime.

Natasha (08:39): I just downloaded it last night.

Kristen Vengler (08:41): Good. Very entertaining.

Natasha (08:45): I think the plan is just to come home and see how things go. I feel like I really kicked into action mode in the past three or four days. I've got popsicles in the freezer in case my mouth gets sore and just walking back from the pharmacy just a few minutes ago with, it feels like half a pharmacy worth of meds in my bag, I realize it feels like I'm going on a journey. It's that kind of planning as if I'm going on a big trip through Europe and it is a journey, actually starting tomorrow. I felt kind of very metaphorical with that whole idea. It's like, oh, let's not forget this and let's not forget that, and I'm sure I've forgotten something, but...

Kristen Vengler (09:25): But you'll be at your house, right?

Natasha (09:27): I will be.

Kristen Vengler (09:27): You won't be on another continent.

Natasha (09:28): Right.

Kristen Vengler (09:29): And you'll know where to go to get it, if you need. And lean on people. I'm being a mom right now, but let your friends bring them.

Natasha (09:37): Yeah. Yeah. No, one of the great pieces of advice I had this morning, so I had what they call the chemo teach, which is when, you meet with a nurse and he or she goes over a lot of what to expect, and I've actually done chemo teaches, so we were able to really cut it down to the nuts and bolts, which was great for me, because I do have to keep reminding myself that I'm a patient, not running the show. Well, I'm running my show, but not their show, and the couple of things that I've heard from the nurses is hydration and exercise are the two things that are going to get me through this.

Kristen Vengler (10:09): Absolutely.

Natasha (10:09): And they had such a great idea. She's like, "I want you to walk 30 minutes a day." And she had this great idea. She's like, "If you've got friends, basically pick a day for each of them, have them call you and they a) get you out of bed for your walk, but they talk to you for the half an hour that you're walking, that I thought was a really lovely idea.

Kristen Vengler (10:27): I love that.

Natasha (10:28): Yeah.

Kristen Vengler (10:29): And you could even break it down to 10 minutes, three times a day, if you want to walk down your stairs, down to the corner and come back.

Natasha (10:36): Yeah. If I'm worried about anything, that's my big concern. Hitting my bed and staying there for days on end is my go-to for anxiety, almost anything. When I came back from having my port placed yesterday, I was home by about 3:30 and I just went to bed until the cat woke me up at 2:00 AM, so I really need to keep an eye on myself for not just spending the next four and a half months in bed.

Kristen Vengler (11:01): We can have some conversations because I had the same propensity.

Natasha (11:07): Well, just hearing that exercise is the best thing for fatigue. I hear it and it sounds like a really hard recipe.

Kristen Vengler (11:15): But it's the best thing that you can do. The more that I'm hearing, and it's for every stage that you're going through, and it's so good for your brain, it gets you out of your head, too.

Natasha (11:26): And the one thing the nurse reminded me this morning is, as the blood counts drop, inevitably because of the chemo, exercise can actually help bring your blood counts up, too.

Kristen Vengler (11:36): If you have someone who does body work, treat yourself, to keep everything moving.

Natasha (11:43): Yeah.

Kristen Vengler (11:43): I keep giving you tips. We'll do that afterwards. I'm sorry.

Natasha (11:46): No, I'm writing this all down. No, it's great.

Kristen Vengler (11:49): I love that idea about a friend getting you up and out of bed.

Natasha (11:54): Yeah, I thought that was great. San Francisco is the city of people who flake, so it will be very easy to be the person who has tons of commitments and then blows them all off last minute.

Eva Sheie (12:09): Culturally, like that, it's okay to just not show up at the last minute?

Natasha (12:12): You can text five minutes before with some excuse and it's perfectly, it's become acceptable. It's weird. Yeah.

Eva Sheie (12:20): Wow.

Kristen Vengler (12:20): Okay. I have to ask, is that post-COVID or during COVID or was it like that before?

Natasha (12:25): The whole time.

Eva Sheie (12:26): Wow.

Kristen Vengler (12:26): Holy.

Natasha (12:27): Yeah.

Eva Sheie (12:29): Tell me about the port placement yesterday.

Natasha (12:32): It's something that patients can decide so you either can have a peripheral IV, so the one most of us are used to where they stick a needle in your arm and then they take it out at the end. Because my treatment's going to be in total a year, the chemo for four months and then, I'll be on Herceptin every three weeks to round out the year, it's a kind of more permanent, but removable thing that goes in your chest area and then takes a little catheter down into your bloodstream, and it was a very interesting procedure. I have two ways I look at this whole process. I look at it as a patient, but I'm also looking at it as an oncology nurse practitioner. This is kind of fascinating at the same time. So yesterday, was one of those fascinating times because the machines that they had in the room where they placed my port were unbelievable.

Natasha (13:18): There was multi million dollars worth of machinery in there and it was not full sedation. It was a very odd kind of Twilight. I was definitely awake and I could feel them stuffing catheters through my chest, and it was a very odd feeling. And then, a lot of pain last night, which came as a bit of a surprise. They said it would ache, but nobody really told me that I wouldn't be able to sleep much, and it may have been the position I'm a front sleeper, so I'm trying to sleep on my front with this port, and it was just, I was up a lot of the night and actually taking pain medicine almost every four or five hours. This morning, it feels much better, but it's pretty bruised. It's a strange thought and feeling that tomorrow they're actually going to, what they call, access the port. They're going to stick a needle in this and right now it looks like a bruised mess.

Eva Sheie (14:11): Does a surgeon do this work to put it in?

Natasha (14:14): No, it's actually interventional radiology and they [inaudible 00:14:17] and it was a great experience. It was just a little trippy to feel something going through your vessels. I had never felt that before.

Kristen Vengler (14:25): That's so interesting because mine was vascular surgery and it's very weird. I guess it just depends.

Natasha (14:34): And did you bruise pretty badly after yours?

Kristen Vengler (14:36): I did.

Natasha (14:37): Yeah. It was interesting when they were discharging me from radiology yesterday. They said, "Oh, are you going for chemo now?" I was like, wow, they would really access it right now? That feels brutal. Happily, I could say, no.

Eva Sheie (14:51): But 24 hours later you feel like it's better enough that tomorrow it will be okay for them to poke it.

Natasha (15:00): I don't want to look when they're poking it tomorrow and I can look at most gruesome things, but no. Although it will be accessed for six or seven hours tomorrow, so I guess I'll look at a certain point, but...

Kristen Vengler (15:13): How long is the, Taxol, right?

Natasha (15:16): No. I'm not getting Taxol. I'm getting Taxotere, Carboplatin, Herceptin and Perjeta, so the last two were the specifics for the HER2 positives.

Kristen Vengler (15:26): Did you get Taxol? Mine was Taxol.

Natasha (15:29): Yeah.

Kristen Vengler (15:29): It was AC for eight weeks and then it was Taxol for 12, and I guess that's the question is, how long is the infusion since it's every three weeks that you're getting it?

Natasha (15:42): They've told me to expect six or seven hours at least.

Kristen Vengler (15:46): So interesting.

Natasha (15:49): It's so interesting. And it must be very frustrating for other people to be hearing how different the regimens can be for two women who have essentially the same... Well, we have a couple of differences, but it's all breast cancer, and how do you know that you're on the right regimen? The fact that they did your AC first and they're telling me I don't need AC, and even if I was going to have AC it would be after the... And I'm not even getting Taxol, I'm getting Taxotere. It's like, you'd think there's a cookbook for this, and yet, some people put extra salt and pepper.

Kristen Vengler (16:21): It's true. It's true. Well, and my staging is a lot different, too.

Natasha (16:27): They've told me to bring lunch, and like a lot of people during COVID, I started knitting, so I'm knitting. That's my plan for tomorrow, which may be hampered by the cold mittens, which was interesting. I actually brought that up. I think my biggest fear through all of this is persistent neuropathy, that sort of, nerve damage and we don't really know why it can be pretty permanent for some people, so just talking about preventing that and the nurses in the infusion center that I talked with this morning said there's really not that much evidence that the mittens and socks do very much, but I'm willing to do anything to try and prevent that, but she did say, I thought it was good advice. She's like, "Don't torture yourself with this. If you've got a cold thing on your head and a cold thing on your feet and a cold thing on your hands and it's just miserable, stop it."

Eva Sheie (17:21): What's your backup plan for if you can't knit? Do you have something to read or watch?

Natasha (17:26): Yeah, I have a nice iPad. I'll find... Maybe I'll watch that Uber movie.

Eva Sheie (17:34): I need to get a San Franciscan's take on it.

Kristen Vengler (17:37): Having the access that you do to the nurses and all of that, they were insistent. They're like, "You have to put it on 15 minutes beforehand. You have to do it for the full hour and do it for 15 minutes after." That's why I got two sets of everything. Of those four appendages, both hands and both feet, three of the four are affected on a daily basis. My right hand is not, but I kind of blew it off sometimes if I wanted to be on my phone. I'd put them on for a half an hour and then I'd be like, oh [inaudible 00:18:09] because I was bored and it wasn't affecting me right at that moment. Now, I wish I would've taken it a lot more seriously, and we talked about it on the podcast. Eva and I have had the conversation about shit they don't tell you. I thought that the nerve damage was going to be during the treatment and it all happened afterwards. I'm not trying to scare you, but I'm happy that you're taking that piece seriously.

Natasha (18:38): That's the problem of working in palliative care. I see a lot of people where their quality of life has been quite significantly impacted by the treatment, not by the disease. As peppy and positive as my oncologist was last week, this is not an insignificant treatment, and it's very odd sitting here today feeling perfectly fine despite having walked around with cancer for who knows how long. I've no idea how long I may have had this, knowing that I'm not going to be fine in 10 days time. It feels strange to harm oneself with a goal of good health.

Kristen Vengler (19:17): I completely empathize with that because I remember thinking, I feel great. I feel great. It's hard though.

Eva Sheie (19:28): There's a little bit of a pattern that I've heard now that I've listened to two of you talk through this and one that's a little troubling to me as someone who hasn't gone through it. Kristen was forced to make a lot of her own decisions in areas where it seemed to me like those were not decisions you'd have the information or the background to make on your own. Like, do you want to have radiation? I don't know. See what you think.

Kristen Vengler (19:58): Yeah.

Eva Sheie (19:59): And something that you said, made me think that, that's happening a little bit already to you, that they're saying, "Well, you can make this decision on your..." Like, getting a port.

Natasha (20:10): It's one of the things I've been shocked by going through this is, I've worked in the oncology world for 15 plus years. I know what a port is. I know the pros and cons. I've been very happy with this sort of joint decision making because I have opinions about how I want my treatment to go, and I realize when I talk to my parents, I go, "I'm having a port placed," my dad's no idea what that means. And when I sent pictures this morning of my beautifully bruised chest and they're just like, "Ow, did you really have to have that?" Yeah. There are a lot of decisions and I think at UCSF, we're very lucky because we have nurse navigators, and I don't know if that's a thing that every hospital has, but it's sort of your best friend who's going to talk you through these things. So, anybody out there listening, if your hospital offers a nurse navigator, absolutely say yes.

Kristen Vengler (20:58): Fully agree. That was one of the things that Dr. Pacella was saying, that behind the scenes, that's the magician that gets all of the appointments scheduled, that helps you navigate literally, the whole process to be sure you have everything in place, because there's so much emotion, and I think that part of what can get lost in this podcast is that we're talking about this in a very... There's emotion, but it's pragmatic. We're giving information and as I sit and I look at you, I can see that you're frightened because you know what you're about to go through, and I'm about to cry right now because I know what you're about to go through, and I just want to hug you and I'm not trying to make you feel badly and it's easy to lose sight, especially with what you do, that you're a human and you're going through this and you're feeling it.

Natasha (22:03): Yeah, there was definitely, when I was waiting in the waiting room yesterday to get my port placed, one of my best friends is a therapist, which is actually really helpful because I get free therapy.

Kristen Vengler (22:13): I love it.

Natasha (22:14): And I can also just have two or three minutes rather than the whole hour, that's sometimes way too long for therapy, I think.

Kristen Vengler (22:18): Of course.

Natasha (22:21): I FaceTimed her from the waiting room yesterday and I said to her, "I think I'm having a panic attack. Can you talk me down?" And she was like, "No, you have anxiety, and it's perfectly normal," which was maybe semantic, but it felt very different. Of course, I'm having anxiety.

Kristen Vengler (22:38): I just was trying to bring the reality of the fact that you may be a clinician, but you're experiencing this in a whole different way.

Natasha (22:48): I feel incredibly lucky that medicine has got us to this point that there is a treatment for me. I think back on my time working with Doctors Without Borders in Malawi. It was a cervical cancer project. A lot of them died of a disease that there was no need to die of. They just didn't have the right treatment, and I worked with a patient... So, there's definitely a tendency of seeing the chemo as poison and the devil and I'm poisoning my body, and she had a very different approach to this. She was like, "Every time I get my chemo, I see this as healing." This is kind of like, she said, "Rather than poison coming in my body, it's this healing light, and I focus on that," and it's a little Pollyanna-ish, but I do like it. One day, I really want to write a book on the language we use around cancer because it's very violent.

Kristen Vengler (23:43): Absolutely.

Natasha (23:44): We're survivors and we're battling and it's a war and it's-

Eva Sheie (23:48): You're a warrior and-

Natasha (23:50): Yeah, it's very violent.

Kristen Vengler (23:54): From the beginning I have not been able to see this as a battle. I've had people say to me, "Fight, fight, fight," and I'm just like, "No, I am going to embrace my body, and I am going to meld into it and visualize the bad going out and the good coming in," and I feel like there's a wonder woman aspect. I just don't feel like there's tribal war.

Natasha (24:18): No, I agree. There's a way that... We were talking, I think before we started recording about how the Amazon algorithm has been pushing me to buy a fake fur duvet cover, which I think is such a lovely idea, and as Kristen said, I'll sweat myself to death, but there's a way that I really want to take care of my body through this. Honestly, and I hope the oncologists aren't listening, but if I want a burger and a glass of wine, I'm going to have one.

Kristen Vengler (24:48): Do it.

Natasha (24:49): And they definitely said, "No alcohol." And I was like, "I get you."

Kristen Vengler (24:53): Yeah.

Natasha (24:54): Actually, it's interesting. You asked me a question about logistics and we got into a chat about other things, but I think, talking about this long day coming up tomorrow and lots of friends are offering to come with me, and I'm curious, Kristen, if you had friends come with you and if that was helpful? Because my gut feeling right now is I actually don't want somebody there for the seven or eight hours. I don't want to feel like I have to be talking to them, and that's my codependent self.

Kristen Vengler (25:22): Sure. Gotcha. I think we had a little bit of a conversation also about both of us living alone and whether or not we could weather this on our own or do we need to stay with somebody? You have to realize I was diagnosed a month before the vaccine came out for COVID, and so they didn't allow anybody in. Nobody could even come upstairs with me while I checked in, so I don't have the perspective of actually saying, no. I was being told no. With that said, there were times I wanted someone to hold my hand and tell me it was okay, but it couldn't be someone I felt an obligation to talk with. As a teacher, as a caregiver, like you, my tendency is to make other people feel comfortable, and that's not your job.

Natasha (26:19): One of my big defense mechanisms is humor, so I don't want to feel like I need to entertain somebody while I'm getting chemo.

Kristen Vengler (26:29): Totally agree.

Natasha (26:30): Yeah, I was talking to somebody this morning who had this interesting perspective as, some people, when they have pain, whichever pain it may be, physical pain, emotional pain, turn towards people and some people turn away, and I acknowledge that I'm a turn away-er. I'm really relying on my support network to turn my face back towards them. There's lots of people who want to do things to help. If I wanted a ride, I'm actually going for my wig fitting this afternoon and it's a 45 minute drive and a friend's coming to take me, but it'll be interesting together for me to be able to track that process and see. Like I was saying a little bit earlier, my fear is that I'll go to bed for the next four months. From talking to you, Kristen and the oncologist, that's not going to help me through this process. I have wondered about actually borrowing a friend's dog for the next few months because that's going to get me out of bed.

Kristen Vengler (27:32): I think that's a really, really good idea because I have a dog, but see how you feel. Maybe you have a friend come up and meet you at the end.

Natasha (27:42): Well, they do need me to have a ride home.

Kristen Vengler (27:44): So maybe they can let somebody come in maybe the last hour or something like that.

Natasha (27:49): Oh, I like that idea, so they're not committing to the whole time.

Eva Sheie (27:55): I have kind of a darker question about the decision making pattern that I brought up earlier, that it seems like there's a lot of decisions you're having to make on your own, that you are equipped for them because of your job, but Kristen wasn't equipped the way that you are to make some of these really big medical decisions. What I want to ask you, from your seat as a nurse is, are the providers who defer the decision back to the patient, doing that because they want to abdicate the ownership of the decision for a reason that we don't want to acknowledge, which might be, if something goes wrong, they don't want the patient to come back and say, but you told me to do it this way?

Natasha (28:39): I don't think so. That's not what I've seen. I think it's more, this move in medicine for it not to be so paternalistic and being told what to do, and more of this, I hear it in San Francisco at the time, this sort of joint decision making, but I think the secret is, if you find yourself in that situation, turn it right back to your oncologist and say, "If I was your sister, what would you recommend?" And that's when you'll get, not the truth, but you'll cut through the, you trying to decide whether you want Taxol or Taxotere. Unless you're an oncologist, how are you supposed to know what you want? It's silly. It's such a stressful time that I do feel like having people make these decisions is a little unfair. It's like their minds are reeling with the diagnosis and now they're trying to decide, do you want a clinical trial? Do you want a port? Do you want? It's like, no. Please just tell us. Tell us the best thing to do.

Eva Sheie (29:34): What choice would we have other than to go on the internet and go deep into rabbit holes, where we're probably not getting the best information?

Natasha (29:42): Yeah.

Kristen Vengler (29:43): Okay. So you're going to do the cold cap. And what is that? Can you explain that to people who don't really understand what that is?

Natasha (29:52): I can maybe give you more information when I've actually gone through it.

Kristen Vengler (29:56): Sure.

Natasha (29:56): I've experience with the penguin caps that seems... So there's two brands from my understanding, penguin caps and DiginiCaps, I think it's called something like that. The penguin caps you're very much on your own. You have to bring a friend, you stick, basically ice packs on your head with a footballers helmet or something to keep it stuck on your head, and the idea is that it just constricts the circulation to the follicles, and therefore, the theory is that you don't get as much chemo to the follicles and you can keep... Your hair will still thin, but they said that with the caps, 85% of people keep 80 something percent of their hair. The new one, the DigniCaps, sounds a lot more involved. It's a lot more expensive. Again, thank you Neil Curry for this, but they're quoting me a couple of thousand dollars for six sessions, but one of the nice things of being in a big academic medical center, they have the reps on site. You don't have to have somebody help you. They actually take care of it all.

Kristen Vengler (30:57): I love that.

Natasha (30:58): I'm really, I'm not sure, I'll let you guys know. They've told me people get a bad headache from it. Definitely take some ibuprofen before you go, but I don't know. I'll take some pictures and report back. I'm not sure.

Eva Sheie (31:12): The penguin is wearing an ice pack on your head, like actual ice, but this is actually a rolling machine.

Natasha (31:19): That's my understanding.

Eva Sheie (31:20): And that there's a helmet. I just looked it up because I needed to figure it out. It looks like a bike helmet kind of, and it must keep your head continuously cold while you're sitting there, which is why it's adding the time.

Natasha (31:35): It could be awful. I've basically committed to one treatment at a time. I think women's relationship with their hair is interesting, and a couple of friends have accused me of vanity, like, "Oh, you're so entitled. You can pay the money because you're so..." and you guys can see me. I don't have beautiful long hair. I have chronic bedhead, so we'll see how it goes.

Kristen Vengler (31:58): Well, the trial here, it comes back. Mine came back.

Natasha (32:01): Yeah.

Kristen Vengler (32:02): And I had the full AC and all of that, but do what you need to do. Vanity schmanity.

Natasha (32:08): Yeah. No, exactly.

Kristen Vengler (32:10): So what kind of comfort items are you going to treat yourself with when you get home tomorrow?

Natasha (32:14): Oh, I think I've bought everything on Amazon recently. I don't think there's much left in their warehouse.

Kristen Vengler (32:20): That's why they're building new warehouses all the time.

Natasha (32:22): I know.

Kristen Vengler (32:22): It's Natasha.

Natasha (32:24): I've bought some nice pajamas. The fridge is full of coconut water because I think that's my go-to for hydration. I also really like it. I just started one of those meal services, a Blue Apron type thing to get some food in me. Yeah, I'm not sure.

Kristen Vengler (32:44): Cozy blankets.

Natasha (32:45): Yeah. Nice cat.

Kristen Vengler (32:47): There you go.

Natasha (32:48): Kind of started dating.

Kristen Vengler (32:49): Oh, that's right. We got to talk about that one. Stay tuned for the podcast spinoff of, dating during cancer of Natasha and Kristen.

Eva Sheie (32:56): Oh Lord. Okay. So, chemo day one, it's tomorrow. And then, when will we see you again for an update?

Natasha (33:08): Whenever you think will be good.

Eva Sheie (33:11): Yeah, I was thinking somewhere around two weeks after.

Natasha (33:13): Yeah. Yeah. That sounds great.

Kristen Vengler (33:15): That sounds perfect.

Natasha (33:16): Yeah.

Eva Sheie (33:19): 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.

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Eva Sheie (34:23): 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