Day 79: How to Win Yourself a Trip to Urgent Care

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. Last time, it was just before chemo number three, before you had all of this craziness with dehydration and all of that, and then a miracle kind of happened that we can talk about later. I love to know, are the chemos different for you? Because you have them three weeks apart and I had them like every other week. I'd love to know what your progression is on that.

Natasha (01:07): Oh, that's such a great question. It's interesting, I remember back when I was doing chemo teaches as a nurse to patients. Never having gone through this, sort of arrogantly telling them that each treatment would be the same. However they reacted to cycle one, they would react exactly the same to cycle two. There were no surprises and it was predictable. I should have been fired for that, because that is just not true. Cycle one, I was learning how the meds worked. I was excited to start treatment. I was proud of myself for showing up and not being a complete wreck. I think I was expecting a really hard time and it wasn't as bad as I thought.

Natasha (01:54): Cycle two, I don't really remember. I think the side effects were definitely more pronounced. Honestly, I don't remember much of cycle two, because cycle three took me down hard. I had this just maybe a five or six out of 10 chronic nausea the whole time and fatigue where I would go for a nap at 3:00 in the afternoon and wake up at midnight, which I don't think quite counts as a nap anymore. And then I went down psychologically. My taste buds seemed to change almost overnight. People talk about a metallic taste, and I still have this, I just can't taste anything. I was aware that I was... Well, I wasn't aware for a while actually.

Natasha (02:47): I just went down. I went to bed and I made a pit in my bed. I stopped eating, and then I got really bad acid stomach, so I was throwing up anything I ate. I started throwing up fluid. I just couldn't keep anything down. Then I got the return of the diarrhea from hell. Talking about this now as a nurse, I'm like, well, yeah, you were heading for really severe dehydration. As me, like three or four weeks ago, I was just heading down and was getting really quite sick. One morning I think I had one brain cell left that fired and said, "If you don't make a change in what you're doing, this could actually become pretty serious."

Natasha (03:37): It was one of those things I think I knew if I called the triage nurse, they would say, "Come in," and I didn't want to get out of bed. But luckily, I followed through. The infusion center I go to has urgent care, which is great. You don't have to go through a regular emergency room. They just take care of you the minute you show up. It was really amazing. There are some colleagues of mine who work there. I was talking with another nurse practitioner and they were just like the cliche that nurses are the worst. This is a little dramatic. I wasn't heading to kidney failure, but my creatinine was high, which meant my kidneys were not happy, and they just filled me up with fluids.

Natasha (04:24): They're like, "We're not going to let you leave until you start peeing. That shows us that you've actually got enough fluids in your system." It took almost four liters to get me back. My potassium was completely out of whack. My magnesium was out of whack. I'd created a pretty sick person really just in a couple of days, which was frightening.

Kristen Vengler (04:44): I hate that for you. How long did it take to infuse that?

Natasha (04:49): Oh, I was there for five, six, seven, eight hours. It took a while. And then afterwards, they were very smart. They basically said, "Look, how about, rather than wait until you get sick, if we know this is how you're going to respond to the treatment, let's just schedule you a hydration date." It's interesting, I feel like I metabolized the chemo slightly slower than other people, and that may just be like... I don't know. I don't get side effects until about day eight, nine, and 10.

Kristen Vengler (05:19): Wow!

Natasha (05:20): I know other people get them quite a bit earlier. They had this great idea of let's just put you on the schedule and come in. We'll just rehydrate you and check labs. Because one of the hormonal meds that I'm on, the Perjeta, does cause really quite significant diarrhea. You're probably going to get that anyway, so why don't we just hydrate you? But while I was there, I talked with my oncologist and she said, "You're on the standard anti-nausea regimen, the Zofran, some Phenergan and some Compazine." She's like, "It just doesn't look like this is working for you." She switched everything around.

Natasha (06:00): She put me on a small dose of Decadron, the steroid, in the morning, and Zyprexa, known as olanzapine, which is being used increasingly for nausea. I wasn't aware that was being used that much. Zyprexa at night with Zofran if I have nausea in between. That's the miracle for me. I feel like a human being.

Kristen Vengler (06:23): Yeah, you look great.

Natasha (06:25): Yeah. The main side effect right now is just no taste buds, but I haven't had any nausea. I have a little bit of diarrhea, but Imodium can take care of that. It's night and day. I mean, I was in a really dark place after cycle three with the side effects and I caught my mental health really deteriorating. I was having a lot of why me's. I was, a couple of times announced, "I'm not doing anymore. I cannot do three more of these treatments." I knew I didn't really mean it, but it felt empowering to say it.

Kristen Vengler (07:01): Sure.

Natasha (07:03): Living alone, when you throw up, I mean this is kind of a disgusting comment, but then you have to clean it up because your mom's not coming to clean it up. It was just... This is a tough time of year for me sometimes. Our 25th wedding anniversary is coming up and I know it's not a wedding anniversary, but I'm still married on paper. It's incredible how quickly mental health for me can go down when my physical health is going down. And now that I'm on the Decadron and the other medication, I was lying in the hammock this morning. I actually joined a gym, which is unbelievable that I even would think to do that because I'm not a gym person. Some of this I recognize is positive effects of the steroid.

Kristen Vengler (07:53): Sure.

Natasha (07:54): But today I didn't take it because I don't want to rely on it and I doubt I would have any nausea anyway. The taste buds, I'm not sure if that's something that you went through. I'm really struggling with the combination that the steroid is making me hungry, which is good because I need to gain weight, but I cannot find anything that's good to eat.

Kristen Vengler (08:17): My taste buds are still not okay. I made the comment last night when I was eating something healthy for me. I found myself using more salt, more pepper, more spices to get things to taste.

Natasha (08:32): I've been leaning towards texture, because it's the only pleasure. But then I realized yesterday actually, and I know we're not supposed to eat sushi, but whatever, I had sushi because I thought that would be an interesting texture and it really wasn't. And then I came home and a couple of hours later, I'm eating sliced peaches out of a jar. It feels exactly the same and tastes exactly the same, like a cold slivery thing. But it's hard. Around about midnight, I get super hungry and I don't know if it's...

Natasha (09:05): It has to be the steroid. Because even though I can't taste, I'm still trying to keep up my calorie intake. I confess, the other night I had DoorDash McDonald's delivered, which I didn't even know was a thing you could do. I wish I didn't know, but I was just craving to fill this hungry pit that isn't getting filled.

Kristen Vengler (09:30): Well, I mean, we talked about my ice cream intake. Because it was during the pandemic I was having Handel's ice cream delivered to me. Of course, you have to order at least $20 worth for them to deliver it. It was always sitting there calling to me from my freezer. To back up just a second for the sushi, the reason that people aren't supposed to eat sushi has to do with it being raw fish and it could make you really sick because of your immune system being messed up.

Natasha (09:55): Exactly, yeah. It's interesting, that is something that I think every cancer patient is told. And what's great is I actually was in a meeting with some Japanese oncologists and I asked how they managed and they thought it was the stupidest thing they'd ever heard. Who knows? I find the same with alcohol. I was told by my chemo teach nurse zero alcohol. When I left the urgent care I was talking about earlier, the nurse practitioner there was like, "Well, go home and have a glass of Chardonnay. You did a really good job coming in today." I was like, how are we supposed to figure our way through this?

Kristen Vengler (10:38): Well, I think that when they're doing the teach and when they're giving you the instructions, they're telling you by the book what they have to tell you. And then when you go to urgent care and people are like, "Just go take care of yourself." Needless to say that chemo four was, I don't want to say a walk in the park, but you had some things in place by the time you got there?

Natasha (11:05): Absolutely. Yeah, it's been relatively easy compared to three. It's almost every cycle's different. I have number five coming up next week. I hope the miracle holds, but bring it on. I don't know. I was taking some notes of what's happened over the past weeks before we met today and just thinking about how people use the phrase, it's a rollercoaster. I think it gets overused a little bit, but this really... It felt like the proverbial rollercoaster. It's like, I don't know what's around the next turn. I don't know if I'm up. I don't know if I'm going down.

Kristen Vengler (11:43): We were talking about this before we actually started recording is everybody's different.

Natasha (11:48): Well, that was one of the things that I wanted to make sure gets covered today because I think it's important for people listening is that they talk about everybody's journey is different. It's also the way that you're going to react to the chemo, as Kristen's saying, but also the medications that go along with it. I kind of had to advocate, again, pretty hard to get my anti-nausea regimen changing. Taking more of something that's not working didn't seem like a very good plan to me.

Kristen Vengler (12:17): Sure.

Natasha (12:19): Yes, it's very easy to check the check boxes of like, this is what we give almost everybody else, but I had to get them to really think outside the box. And it's worked. I guess once again, it's like the message is, you don't have to put up with feeling sicker and sicker and sicker.

Kristen Vengler (12:40): You don't have to be the standardized, televised, moviezed. You can have things changed. Five years ago, you and I would've had the same treatment.

Natasha (12:49): Right. I'm not sure if we have even one drug in common.

Kristen Vengler (12:55): I don't think so. I think I had Zofran.

Natasha (12:57): But I'm thinking of chemo drugs too.

Kristen Vengler (12:59): No. No. I had AC and taxol.

Natasha (13:02): And I'm having taxotere and carboplatin.

Kristen Vengler (13:05): They didn't know to look at those things before.

Natasha (13:10): I wonder if, and I could do some research and come back and tell us, how much of... There's also oncologist's choice. There's a little more wiggle room, I think, with the treatment regimens. There's a Facebook group that Kristen and I are members of and people will often post their regimen, and I'm amazed how many different regimens people are on. It's really stocking. It's interesting, it reminds me of when I was working with Doctors Without Borders in Malawi on the cervical cancer project, one of the oncologists who worked alongside us had a completely different chemo regimen than is acceptable in the so-called developed world.

Natasha (13:51): There would be endless back and forth about, you know, Doctors Without Borders doesn't want to finance or to help support something that hasn't been sort of standardized in Europe and the US. But the oncologist in Malawi is like, "These are my patients. This is what I've seen. There may be something inherently different about the way people from Malawi handle this chemo, but I am not changing to your regimen."

Kristen Vengler (14:16): Wow! Your hair, let's talk about how amazing your hair was, mine's still growing out, and the cold capping.

Natasha (14:28): The cold capping, I had a haircut a couple of days ago, which I don't think is... I got a big discount for being the chemo girl with the haircut. It was very sweet. I have not been aware of losing hair from my head at all. Everywhere else is gone. I really feel so strongly that it should be covered by insurance, almost enough to start writing letters and making phone calls and being annoying. Because I think initially, I felt guilty having the luxury to be allowed to have a machine on my head to save my hair, which is such... As I was putting that sentence together, I was like, that's such a ridiculous situation to...

Kristen Vengler (15:11): To save your mental health?

Natasha (15:12): To even have to say that. Is it a vanity thing? I don't know. I mean, I trip up over that, but what it allows me to do is not have to talk about my cancer if I don't want to. I can pass in the world as... I can't say normal, not that we're abnormal, but not as a patient.

Kristen Vengler (15:32): Sure.

Natasha (15:35): What are the downsides? It's a couple of thousand dollars. It extends my treatment day by about a couple of hours, because they literally freeze your hair and the follicles and there has to be a cooling period afterwards. But it was a very nice gift from my dad.

Kristen Vengler (15:54): Well, to your point of going through the world and feeling like people don't look at you differently, I can't even believe I'm going to say that I had the luxury of having my treatments during COVID, but that kept me in. But when I did go out and I had lost my hair, I wondered what people thought and then I just didn't give a shit. I think that there's a lot to be said for your mental health and your outlook when you're going through this, and to not have to go through those things is huge.

Natasha (16:31): Yeah, no, I agree.

Kristen Vengler (16:34): I am so happy for you that you're feeling so much better and your color is so good. You had a haircut.

Natasha (16:43): I did have a haircut. My sister had an interesting way of conceptualizing how she feels about me having cancer and going through treatment, which really resonated with me. She said, "I can totally accept the fact that you're getting treated for cancer. I just can't accept the fact that you have cancer." It really hit home.

Kristen Vengler (17:08): That's very powerful.

Natasha (17:12): And for me, none of the side effects I've had are caused by the cancer. The cancer didn't really do anything bad except show up. I was lucky enough there was no pain associated. In a way, what I talk to my friends and family about is the treatment.

Kristen Vengler (17:33): That's where my heart goes out so much to people in early diagnosis. Because again, everybody is different, but I see where they're going and I understand where their heart and their mind are. They have to go through it.

Natasha (17:52): It's interesting, as you said that, my fingers automatically counted how long since my actual diagnosis, and it's the 19th today and my diagnosis was January 19th. It's been exactly four months.

Kristen Vengler (18:07): Wow!

Natasha (18:08): It feels like no time at all in a way, but it also feels like this is the world I've... Well, it is. It's a blurring of my professional and personal. It's like it's all cancer all the time.

Kristen Vengler (18:22): Do you feel like a different person?

Natasha (18:26): I do, actually. I feel stronger, which is a very strange thing to say. I mean, I've shown up for myself in ways that I can feel proud of, except for the two days when I was just lying in bed, being completely useless. There's an interesting parallel for the two of us kind of going through this alone without a partner. We're doing it. We've done it. We can do this. In the middle of the treatment, I refinanced the house, moved my ex's stuff out, started dating. I think women are amazing. Women are amazing.

Kristen Vengler (19:06): It's amazing what you can do when you have to.

Natasha (19:09): Yes.

Kristen Vengler (19:10): But at the same time, as wrecked as my body feels sometimes, I am a different person and I'm a better version of myself, of my soul, of my heart, of my spirit than I was before.

Natasha (19:30): Some of it feels a little cliched, but I do have a sense of the whole like life's short. Don't put off something you actually really want to do. I love going to live music. What I've also been doing the past month or so is just going to a ton of shows, however much the tickets are. I saw Blondie the other night with The Damned. It was amazing, and the tickets were out outrageously expensive. I didn't care. I don't know if this treatment's working really. I haven't had a scan for a while. I sense it is. The lymph node under my arm, nobody can feel it anymore. But I don't know. I don't know.

Kristen Vengler (20:19): It's not that it's gloom and doom that you don't think you're going to make. It's just I don't take anything for granted anymore.

Natasha (20:28): Yeah. That's more of what I was meaning. Particularly time, that's what I'm not taking for granted at all. It's interesting, you asked if going through this had changed me as a person and I immediately sort of went to the personal. I'm really interested to see if I get through this or when I get through this going back to work, how it changes me as a nurse back working with oncology patients. I worry that I might over identify. I might make it all about me if I don't work some of the post-treatment issues out. I'm curious whether I'll tell patients. I think there's pros and cons to that. I'm really curious to see in a year or a couple of years time.

Kristen Vengler (21:19): I think there's a lot of value to a patient knowing you've been through what they're going through, even though the palliative care, it's obviously more advanced. What I learned in teaching is that when people realize that you've been there, they're more willing to see you as human and to open up a little bit more. I found that with my students.

Natasha (21:42): But I worry about... We were talking earlier about how many different treatments there are and everybody's journey is not only sort of emotionally and psychologically different, but practically and logistically different. It worries me a little bit that patients would try and get the treatment I had, even if it wasn't the right treatment. I don't know. It feels messy, but I'm very sort of open and curious to see.

Kristen Vengler (22:08): I'm glad that you're open and curious and not fearful. You have chemo five coming.

Natasha (22:14): Chemo five in just under a week.

Kristen Vengler (22:17): And then three weeks later, chemo six.

Natasha (22:19): Yes.

Kristen Vengler (22:19): And then a little time after that, then you'll have a lumpectomy.

Natasha (22:24): Right. I did a Zoom meeting with my surgeon. If it lasted two minutes, I'd be surprised. Sometimes when things like that happen, I realize I'm being treated as a nurse patient rather than a regular patient because it was a little bit of like, "You know what a lumpectomy is." And I do, but I'd like to hear it. One of the questions I had was, given that nobody can feel these lumps, do I still really need surgery? Everybody asks that. Yes, you do. Surgery, July 19th. 19, that's my date it seems.

Kristen Vengler (23:03): Isn't that weird?

Natasha (23:05): And then they want I think she said about four to six weeks recovery, and then six weeks of radiation from what I can understand. And then HER2 hormone blockers to round out 2022.

Kristen Vengler (23:21): Wow! They have hormone blockers for HER2.

Natasha (23:24): Yeah. I'll be on Perjeta and Herceptin for a full calendar year every three weeks.

Kristen Vengler (23:32): Well, I am so relieved that you've gotten through the horrible part.

Natasha (23:41): This cancer can take us to some dark places.

Kristen Vengler (23:44): That's for sure. Well, I love you and I'm so glad to see you looking so healthy.

Natasha (23:51): Thank you. Thanks, guys.

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