Episode 32: My Breast Cancer Experience Part 2

Intro & Announcements

•  Link to Episode 31
•  Flourish 
•  Paper Doll Militia 

Timestamps

• 2:22 – Post-surgical pain & recovery 
• 6:06 – Tissue expanders: experiences & challenges 
  •  Video of how TEs work
• 10:29 – Radiation therapy: process & effects 
  •  Masque of the Goblin King 
• 16:41 – Hormone therapy: ongoing treatment & side effects 
• 22:52 – Lymphedema: understanding & managing symptoms 
• 26:48 – Conclusion & support for others

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Transcript

SPEAKER_01 0:04

Welcome to The Aerial Alchemist, where movement transforms into magic and stories take flight. I'm Fallon, dancer, aerialist, and storyteller, inviting you into a world where circus and dance meet creativity, resilience, and community. Whether you're here to be inspired, to learn, or to simply dream a little bigger, you found your place. I'm glad you're here. We are continuing the chat from last week. Uh so I'll link that in the show notes if you want to go back and listen to part one of my breast cancer experience. This has all kind of been prompted. I had planned on talking about this eventually, anyways. It just hadn't come up on my list of things that I was feeling inspired by until Rain from Paper Doll Militia uh sent out an email about her breast cancer experience that she had last year. So it re-inspired me to chat about it. Before we get into the bulk of the episode, just a reminder, Flourish, our retreat in Italy is like a month and a half away. What? There's still time. You can still come. You can still come, get your tickets, and meet us in Umbria in Italy, where we are gonna have a beautiful creation retreat in the Italian countryside with rigs set up next to a pool, learning interesting and new pathways, learning character work and creation building skills. And and yeah, and then relaxing and doing discovery because you need to get a little bit bored in order to be creative. So we will allow you time to get a little bit bored in the best way. Right. So come with us June uh 19th through the 25th. The link is in the show notes. You can uh learn all about it, and feel free to message me if you've got questions. All right. So getting in. As I was editing last week's episode, I noted to myself that I was talking about the recovery after a mastectomy, and I did not give the post-surgical pain the weight that it deserves. I kind of breezed over it. Yes, I was on narcotics. I did get off of them relatively quickly. I am someone who has a higher pain tolerance. I think a lot of aerialists tend to be like that. Aerialists and dancers, for that matter. And yeah, I don't think that I really talked about those first couple of days when I was still on the narcotics about just how painful it was. It was quite painful. I did need the narcotics. I was taking them as prescribed as often as I could, which I don't normally do for most things. I've been fortunate enough in my life to not have a lot of surgeries. This was actually my first major surgery up till that point. I had had my wisdom teeth out and also apparently assist removal when I was a baby that I don't even remember. So um, so truly it was just the wisdom teeth that I remember. This is different because a mastectomy is an amputation. And so there's a lot of things that go along with that. So, in addition from just surgical pain of cutting into your body, then there's the um paresthesias or the phantom pain that comes from a limb loss. So I had plenty of paresthesias. They severed all of the um the nerves in my breast tissue. So uh I don't remember if I mentioned this last week or not, but I have known sensation in the skin of my chest anymore. So that was how they were able to fill those tissue expanders. I didn't need any numbing medication. They can literally stab a needle into my tit and I can watch and I can't feel a thing. It is a wild experience. One I don't necessarily me recommend. And then even though like I don't feel anything, those nerves are still trying to like send messages to my brain. So for a long time I was having paresthesias, which can feel like tingling or sharp shooting pain or aching. There's like a lot of different weird pains. And sometimes it's definitely subsided. I don't feel it like I used to, but there are still times where it's I still am getting that sensation here and there of a sharp shooting pain in it feels like my nipple, but I don't have one and things like that. So it's just kind of one of those things. But that post-surgical pain for the first couple of days, yeah. I remember my husband was really very concerned for me. He's never seen me like that, where I just, it was really, it was really hard. I remember I stayed in the hospital overnight after that surgery and not wanting to call the nurse in the middle of the night for my um my norco, my my narcotic dose in the middle of the night. And I was like, oh, it's not that bad. I can tough it out. And like five, 10 minutes later, I was like, oh, I cannot. I mean, I could, anybody could, but why? Because better living through pharmacology. I also know that once you get behind the pain, it's hard to catch back up. So you want to stay ahead of the pain. So that's what I tried to do. So yeah, every four to six hours, whatever it was, um, and then it switched to like six to eight hours. I was taking my pain med also on muscle relaxers, which were helping as well for those first like five days post op. And it was much needed. So, anyways, I wanted to just throw that out there in case other people had experience and were like, what? Yeah, it was not fun. So wanted to talk about that. So yeah, I had that surgery. They put in the tissue expanders during that surgery, and I mentioned that I was going every week to get my get them filled until it was the right size. That was also a wild experience. So they had it initially filled them with a little bit of air during the surgery, so that when I went to that first appointment, they took the air out, put the saline in. And can I just say all I had left was these tissue expanders, which I'll see if I can find like a video or a picture of them or something and link it in the show notes so that you can see like what they look like that were in me. And like they're very, they're very hard. Like they're a plastic material. They are meant to withstand like all sorts of treatments, so they're not, they're not soft and squishy. It didn't feel like I had, you know, anything natural in there at all. So I have these in in me, and then just like my skin over it, and everybody kept telling me how thin my skin was. So you can see everything like through my skin. I didn't know that there were different, like like that that was a vast like variance in humans of skin thickness, but apparently it is, and I'm on the thinner end. And so yeah, so I had the expanders in, they take the air out, and when that happens, it's literally like deflating a balloon and it just like sucked to my chest wall. My husband was there with me, and then he had to like look away because he was gonna like pass out. And I looked down, I was like, whoa, this is like the most alien thing ever. Because I didn't have any sensation superficially, but I do have sensation on my chest wall, so I could feel it pushing against my chest wall, um, wild, and then they started inflating them. So it's very sci-fi, very sci-fi. So I had those in, which ended up being over a year. So the part that I didn't touch on last week is that I had had my show Embers Peters Petals and Stars, which if you've been listening to the podcast, you've you've heard me mention that show because it was very near and dear to me. And this was part of the reason because it that show was supposed to happen in 2024, in um Sept August. August, September, anyways, August 2024. And my breast surgeon wasn't gonna let me postpone my surgery. And we didn't know like if I'd be able to be recovered. It was gonna be it, it's a very demanding show for me. And so we decided to postpone the show. So I did have to postpone the show by a year, is what I ended up doing. And I had those tissue expanders in that whole time, and I didn't want another surgery until after that show. So those tissue expanders stayed in for like, what was it? Like 14 and a half months or something, but who's counting? So those things are basically medieval torture devices. They are so uncomfortable. And it was okay at first because everything was just like uncomfortable. And I was like, well, this is just part of it. But then once everything kind of settled down, once we had gotten them to the size that they were gonna be and we weren't continually tightening them, I was like, it just felt like I was wearing an underwire bra all of the time, 24-7, could never take it off. And um it changed like throughout whether like like most of the time I couldn't wear an actual bra because it it was too uncomfortable. And every once in a while, depending on what I was doing, I had to. Um, and then I also had developed lymphedema at at a point, which I'll get into in a minute, but there was like a bra that came with that that I had to wear, but then it was super uncomfortable because of the expanders. It's a whole thing. So um tissue expanders, not fun. Zero out of 10 recommend. Um and the thing that I was always very upset about was that they have, I think I mentioned that there's magnets in the tissue expanders where the port is so that they can find where they put the needle in to fill them. And so I thought I was like, oh dang, there's there's magnets in my boobies. Uh, can it hold my phone on the mag safe case? No. It couldn't, nothing would stick to them. And I felt really upset that they weren't strong enough to have that happen. And maybe there's problems with that in other scenarios, but I was just really disappointed that I couldn't even have that perk to have like a really fun party trick. Anyways. So I mentioned that I had to have radiation. The after the mastectomy, they sent my tissue off to the lab to, you know, check everything, what kind of cancer I had specifically down to the grade, and all sorts of there's all sorts of numbers that they plop onto it, my oncotype, all these things. And one of the things that they're also looking for is clear margins. And unfortunately, on the right side, they did not get clear margins. That one, if you recall, was the one that was stage one instead of stage zero, the invasive lobular carcinoma, and was so close to my skin that there was just no way that they were able to get clear margins out of it. No matter my breast surgeon had brought it to tumor board twice to make sure that there wasn't something she was missing and some other way she could get it out. After that happened, my breast surgeon or my breast surgeon, my plastic surgeon was like, no, we can cut it out, we can cut it out. And he like went back and like looked at things from his angle and no, we had to had to do radiation. So I had radiation done in, I think it was like September through October. I think radiation gets downplayed a lot because it's not as bad as chemo, allegedly. But also chemo basically kills you. So the bar's like in the basement. So radiation is like just a step above that. It's also really terrible. And the actual like treatments are not bad as far as like you don't necessarily feel it. Like one time I felt it, and it just kind of felt like there was like that static electricity in the air right before you get that static shock, but like you don't get the shock. So that's kind of what I felt like one, maybe two times. Other than that, I didn't feel it happening. So you just go in and it's quick. It's like 10 minutes that you're in the office, like 10 to 15. So really quick appointments, but it is every single day. Every single day you were going in. And for me, it was a 15-minute drive one way. So that's 45 minutes out of my day right there, which is kind of a lot on top of everything else you're already trying to drug juggle because you don't have any restrictions during that. So they're still expecting you to, you know, be normal and live your normal life as you're doing this. So 45 minutes every day out of my life. And that's if they were running on time, which usually they were, but sometimes they weren't. So it could be an hour out of my day. And I did that for 33 rounds. So six and a half weeks, because you have weekends off because they're not there on the weekends. So 33 rounds of radiation. Um, and that's basically like going in and getting a sunburn every day. And what happens is over time that builds up and your skin does start to react to it. So I even still it looks like I have a tan in this square on my right side of my chest that goes up into my armpit. It's wild how like targeted it is. It's a very clear, straight line in a in a rectangle on my chest. And during the treatments, I was starting to get a bit of skin breakdown. I was so diligent about putting on my creams immediately after radiation and every morning and keeping it very hydrated. And my radiation oncologist was very proud of me. He said, most people's skin doesn't look like this, but I have very sensitive skin and I knew that this was going to be a hard time. So I did everything that they told me to do from the beginning. Um, and about I think halfway through, um, he switched me to um, in addition to like just an over-the-counter like calendula cream, he um switched me to like a steroid to help my skin just get through it. And then um, and then also gave me some bandages that I could wear when it started to rub in certain spots and my skin was starting to open up. So yeah, it was tough. So that was the outside, but then on the inside, it's like getting a sunburn every day. And we all know what happens, like when we sit out in the sun all day, we feel really tired. And what I learned through this process from my radonk doc was that there's a chemical, and I can't remember the name of it, that is released in your body after you have sun exposure and that UV exposure, and it makes you really sleepy. It's that like sun-drenched feeling. And so that's what I was getting every single day. And he said, there's really like it's just gonna keep building up. And the only thing it's you're you can't stop it from happening. The only thing you can do is exercise will speed up the metabolizing of it in your system. So you're feeling really tired, but then you know you need to like do a bit of exercise to not feel as tired. So I was just really gentle with myself in that I was making sure I was walking or doing something physical. Sometimes I was lifting weights, doing a little bit of aerial. I did perform, I was on day 30, 30 or 31 when we had an opening night of of my radiation treatments, and I was performing, which is wild when I say that out loud. But in at the time I was like, this is what I do, and I just need to do the thing. It was far from my hardest piece I've ever done. And for my Patreons, trends on Patreon, you can watch that on Patreon. There's a link to it. It's the Masquerade, the Mask of the Goblin King act. Anyways, I'll link that for you too. I think you can, if you're not a patron on Patreon, you can buy just that post and it should be relatively inexpensive for you to see. Yeah, so I did perform during the radiation treatments, but it was an easy light performance as far as they go. And then I was taking naps every day. My muggle job was awesome. They were putting me as like float shift every day, which means I'm like the late start, and they were letting me leave early so I could go to my radiation treatments and then have a nap. There was no making me come back after that. So yeah, everybody was very gentle on me as well during that time. So yeah, so radiation sucks. Do not recommend. And also it's like the was the only way that was gonna get rid of the rest of the cancer cells. So it's what we had to do. When people were like, Oh, I'm so sorry you have to have this. I was like, Well, what are the other options? Continue having cancer. No, thank you. So after that, I the treatments were not over and they're still not over. It's a miscon it's a misconception that people have. I am still getting the questions here and there, like, so you're good now? Are you good now? Are you done now? And I don't know what that means because I'll never be done. Really. You're never gonna once you have cancer, you're not gonna like just all of a sudden be back to how you were before cancer. That's not an option. So I had said that my oncotype was low, so I didn't need chemo, which was great. Ideally, in this whole, like the most perfect way this whole scenario could have gone after diagnosis was surgery, and that's it. But that's not what happened. We had surgery, then radiation, and then I had a hormone receptor positive cancer, which means I needed and still need endocrine therapy or hormone therapy. So it's this idea there's ER positive and PR positive. So it's um estrogen receptor positive and progesterone receptor positive, and I have ER-posit cancer. So we have to now block the estrogen because we don't want that in there, potentially causing a recurrence of cancer, especially with my BRCA2 mutation. So I am on there's different ways of doing this, and the ones that I am on is lupron, which is a ganatotropin antagonist, which means they've blocked my ovaries. And then I'm also on an aromatase inhibitor or an AI, which the one that I am now on is XMS thane. I had started on uh an astrazole, and that was the devil. They're all the devil. But that one was even worse for me. So now I'm on XMS thane. If you care, you can look these up. But I but for those of you who might be on this experience as well, this was this is where I'm at. And those of us who have done this are pretty familiar with all of the different drugs because they try a bunch of different ones and we know people who are on different ones, and we're in forums like asking like questions and sharing knowledge. So basically what that means is I get an injection every 28 days. That's the Lupron, and that's what's shutting down my ovaries. And then the AI is the one, the ovaries aren't the only place that you make your hormones, as women we make them in other places too. So the AI shuts it down in all of the other places in my body. So basically, I have none estrogen now. They put me into medically induced menopause, um, and it happened very quickly. I got my very last period on December 6th of 2024. And I had to think about that for a minute. What year is it? 2024, and that was the day of my first injection, which was one last gift. It was my last period on the same day. And within about a week or two, I was getting just about every menopausal symptom that exists. Everything from hot flashes so badly, so badly, so many of them, anxiety, joint pains, dryness, vaginal dryness, libido loss. What else? I don't know. I went in and it was just always like a laundry list for my oncologist of all of the symptoms and getting on different medications to counteract, which I hate. I went into this like on exactly one medication. Um, and now I don't even I'm on too many now. It's now I'm on more than that. So that sucks. But yeah, um, and some of them are just to counteract the two medications that are putting me into menopause or put me into menopause. It's not for the faint of heart. And I will be on them for um five years, minimum of five years, or until we take my ovaries out, which I plan to do that surgery this year. Once that happens, then I can stop the injection, but I will still be on the pill, the aromatase inhibitor, for a minimum of five years, maybe more. We'll see. I cannot have any sort of HRT. I get asked that all the time, and I so just want to like th like throat punch people. I'm sorry if that sounds harsh, but it's exhausting having to educate people on this. So I'm going to do it here so that you don't do it to your people. Here's the thing if we are blocking the hormones on purpose, then we cannot put them back into our body. Does that make sense? I already make my own hormones quite brilliantly. And my mom was quite old before she went into menopause. So I think I would have continued to do it had they not stopped it for quite some time. I'm too young for this. Um, so no, I cannot take any hormone replacement therapy.

SPEAKER_00 21:27

That's what HRT stands for. So for getting rid of them, no, we cannot replace them. Okay. I hope that's clear. Sorry if that sounds rude or feral or mean or whatever. I don't care. We have to learn.

SPEAKER_01 21:41

Brain fog is another huge symptom. I'm going to edit out the giant pause that I just had because my brain literally just stopped working. Like it just stops, and you can't find words and you feel so dumb all the time. It's awful. That I don't know if that's gonna get better. I feel like it sort of has a little bit. I'm working on different things to try to help, but it's certainly not a medication that helps. Yeah. So this has kind of been the hardest, one of the hardest bits for me is the hormone therapy because it's just so long. Everything else was like six weeks. And I'm like, you can do anything for six weeks. I went through nursing school. That was way longer than six weeks, and that's hard. I like rebuilt a house. That was almost two years, and that was really friggin' hard. So six weeks I've got when I'm on this hormone therapy for five years, and I just have to be over here raw dogging it without any HRT. That's a long time. That feels harder. Yeah, it's not a good time. There's also everything that goes along with being in menopause, is worrying about muscle loss and bone loss and all that thing. So I'm like actively working to counteract that. The other thing that happened, it was right around the same time I started the hormone therapy. And I do believe it's unrelated. I do believe it's just my body doing a weird thing because it does weird things if it can always is I have lymphedema. And lymphedema happens when you uh take out lymph nodes. So here's the thing that I didn't understand going into this, even as a nurse. I was told I was gonna have a mastectomy with lymph node biopsy. And in my brain, I was like, biopsy, take a little piece of tissue, right? Because that's how we do a biopsy of anything. Take a little piece of tissue. Fine. And I was like, cool, that's fine. Biopsy lymph nodes, make sure there's no cancer in there. Great, wrong. They take out the lymph node in order to biopsy it. So they took out um my sentinel nodes and three on the right and two on the left. So you've heard me say my lucky lefty and my rotten righty, but that has since changed over the years. Uh, the left side was the stage zero. We only took two lymph nodes out of there. The right side was stage one, didn't ha get clear margins, had to have radiation on that side, took out three um lymph nodes. So that was like, okay, that's gonna be my worst side. Now, when they take out lymph nodes, you have a chance of getting lymphedema because what happens is those little lymph nodes are like their train stations, essentially. And they're train stations in your body to move the lymph or all of the waste byproducts that don't end up in your blood, they end up in your lift, they move it through your body. And those um lymph nodes are little train stations where they can kind of hold and like let things go through and pull keep pulling things through. Well, if you have pulled out five of the train stations, then things might get backed up. And it was never really a concern for any of my surgeons that I would get lymphedema because five lymph nodes total is not that many. Like people we have way more than that, and people can have more than that taken out and never have any problems. And so, like the chances of me developing lymphedema were quite slim. However, I did it anyways, and not on the side where three were taking out and it had radiation and all this damage and trauma. Nope, on the left side where only two were taken out and it didn't have any radiation. Um, so that's been also a thing that I've been struggling with because when you work out, you get a lot of waste byproducts that go into your lymph. And if you work out too hard, you have or work out hard, you're gonna have more of them, therefore more backup. So I have to really balance my workouts and um my activity levels so that I'm not getting a lymphedema flair because it swells and then it hurts. And I don't really mind that it looks puffy because honestly, nobody can really tell except for me and fine, whatever it is, what it is. It's the pain that comes with it that then I feel like it's new pain. I feel like Aerulison dancers will understand this. Um when you're new to it, you start feeling pain and you have to decide, is that pain gonna kill me or not? Or can I push through it? Is it superficial pain or is it like actual pain that I need to be worried about? And when I get the lymphedema pain, especially the first time, now I'm starting to figure out what it is, right? But especially at the beginning, I was like, am I seriously injuring something so that I won't be able to like do my work after this? And so it's it's that sort of anxiety around it of trying to figure it out. And then eventually, if I push it too hard, yeah, like it is gonna impede on things. So yeah, so it's all a balance. And here we are. So that's where I am today working through that. I am now working with a a new personal trainer that's really helping me balance um my workouts so that I don't push it too hard. And that's what I have to go do now is my workout so that she doesn't get mad at me for not doing my workout. I really thrive on having that accountability. So yeah, um, that's kind of my story up until now. I'm open for questions. If you want to learn more about any of this, I will answer as best I can. I am a nurse and I'm not this kind of nurse. And I learned as much as I could through my process, but I am, I there are a lot of different kinds of breast cancers and different things. Um, and I know just I've just scraped the surface. But I'm happy to help where I can. Um, if it's something that you are going through or you have a friend who's going through and they want someone to help guide them, I've got a bunch of resources that I've gathered over the last couple of years that could help. And like I said, I'm here to be a sounding board, listening board, someone you can vent to, someone you can talk it out with. Um, yeah, because like I said, I looked for someone who was like me and I couldn't find them. So if I can be that for someone else, I am here to be that for someone else. I've since found a couple of others. It was just a little bit later than what I had wanted. So that's it for this week. Next week we'll talk about rest and recovery and what that can look like and what that can mean. And that's a hard thing. That's a hard thing for a lot of us. So it's important to chat about. But I want to thank my patrons on Patreon always for supporting me in all ways. I could not do this without you. I appreciate you more than you'll ever know. If you have requests for future episodes, please reach out to me. I am at In the Wings Ariel on all the social medias and on Patreon at In the Wings Ariel. I'd love to hear from you whatever it's about. I hope you have the be a beautiful week and I will see you next week. This has been the Ariel Alchemist. Now go create some magic of your own. Happy flying.