Transcript for What Amanda’s Learned About Life, Love & Community (Post Surgery Pt 2)

Okay, great. Everything is in episodes 309 and 310 plus the episode right before this where we talked about everything leading up to mastectomy day. Okay. Pod Squad, we in this episode are sharing a lot about what I've been through through my diagnosis and surgery and treatment just as an explanation of what we've been through and what we have learned and seen, but we are obviously not doctors and none of this should be used to apply to your medical situation because every single Person and prognosis is totally different. So we do want you to use this to reach out for good solid medical advice and get several opinions, not just one, but don't include us as one of your medical opinions. We're just here to cheer you on and love on you and give you some inspiration to go get your medical opinions. We love you. Thank you. So about five weeks ago, breast cancer diagnosis, then a lot of learning, leading to bilateral, which means double mastectomy. And so we talked about all that in those three episodes. And today we're talking about What to expect when you're expecting a message.

Okay, yes, okay, so first of all, things that I think that we did really well and by that I mean you did really well is that you two came in. two nights before the surgery. Thank God. I know, which I was like, that seems excessive. They don't need to do that. That's a lot of time. But honestly, that was so huge because there's so much to think about to plan to like get in order before in some ways that's like more of the the Super Bowl than after. So that was a godsend. If you can have support in the day or two leading up, that feels really important to get your like stations together to get, you know, your places where you're going to have the blankets you need, the medicine you need, the cozy spots where you think you're going to sleep, all those things. So the super important thing and I'm laughing at myself because I only spent like 20 hours on Facebook marketplace, finding a used off-brand lazy boy with a giant handle that you had to pull and that John and my dad set up and couldn't get upstairs. And then my mom because she has done all this research was like, actually, do you know that? I think it's a Renaissance or something connected to my cancer institute that I was working with. My doctor there, they have a deal with our local Renaissance, like furniture place where you can rent a lazy boy for, I think it was like $180 for the whole month. And that includes them picking it up, bringing it to your house. It comes apart into pieces so they can bring it up to your bedroom, setting it up, and it's a power activated. So like one of those ones where you can push it up, sit on it, and then bring it down. That was an absolute God said.

And I should say that I don't even know that it's a lazy boy brand.

I don't even know that that's a case. But the point is it's a recliner chair where it power activates with the button. I never would have been able to do that lever. Like I couldn't even do the buttons on my shirt. It's power activated. Press the button. It lifts your legs up. You can do the back and forth on your back. And I slept in that for a week. And comfortably, but I couldn't lean back on my own. I couldn't lean forward on my own. So that was a God send. My friend, James, who had this surgery a couple years ago, she told me about the importance of that. And then my mom did the research to find it. And that's been a dream. I think it's important before to read all the things. You feel like the things that they give you. are too much and overwhelming and they are, but you just need to read them all because you will find in all of them. There are contradictions in what the people say. There are things that are really unclear. It doesn't make any sense. So you have to make a list. This is the third thing. After you read the things, you make lists. We had a Google Doc that the four of us shared me, you and John. And we had all of our questions as they came up, all of the helpful articles that we'd found, et cetera. And then we had printed out for the day up, a list of questions to talk to the anesthesiologist about the day before the surgery, a list of questions to talk to the pre-op, nurse about before the surgery, a list of questions for the surgeon, the day up, a list of questions for the post-op after. And it was really, really important to have those and then also you just need to ask all of them. Like I realized at the end that you know, you're a little loopy, you're like you feel like so grateful that things went well that you didn't ask all the questions and like just ask every single one of them. Their job is to answer your questions. You wrote them down for a reason. Ask them even if they seem redundant. But they need to be typed out because you can't rely, or at least I couldn't rely on me knowing what I needed to know and having them organized by person you're going to be speaking to was huge. So all of the questions typed out. Also, your anesthesiologist will tell you you can't have any liquids. I can tell you, I mean, nothing is funnier than the part that was most upsetting to me about this entire surgery was the fact that they told me I couldn't have black coffee the morning of the surgery.

We sort of think it's true. This is off the record. I'm speaking for myself. I'm saying, you don't take, they're just trying to cover their asses. You talk to your surgeon. Yeah, okay? You don't listen to the anesthesiologist. You go to your surgeon. If that coffee is important to your anesthesiologist, you say, here's my question. Am I allowed to have black coffee with no cream on the morning of my surgery? And your surgeon's gonna say, You damn right, you do.

I don't point me to live. The point is confirm all of your things. Yeah. But seriously, that made a difference in my happiness level. And in fact, in my nausea. So Fine, that's about.

Or don't, if you don't want to. No, no, no. No, this is great. Okay. So I am a person. There might only be a handful of us on the planet who became addicted to nicotine chewing gum, even though I wasn't addicted to nicotine cigarettes. This is confusing to explain to doctors when they say, are you a smoker? And I say, no, never have been. And then they say, well, then why do you just check the box of nicotine? If you've never been a smoker and you say, well, I accidentally got addicted to nicotine gum. So here's how it happened when I decided to stop drinking. Was that four years ago? Something like this. I realized that I needed something Just something. Something for the love of God. So that day, I went and picked up Nick Greick up. And thinking, you know, so something take the edge off. Why not? So I chewed that to take the edge off and then accidentally got very interested in the kingdom. So I am in these meetings with the doctors. having yet again the very awkward, like it always makes them laugh conversation about when they go over my history before the pre-op with surgeons and they're like, oh, you can't have any nicotine in your system. You have to stop that right now. specifically because this is why it's so important to bring this shit up because nicotine contracts your capillars. Yeah, your vessels. It contracts your vessels. So it really slows down and impedes healing. So just the nicotine in that gum was risking. They're like, you need to be off of it for weeks before you're surgery.

You don't go in and hurt all the shit before. You sell everything.

Right. Exactly. So then they tell me, okay, you're one, take the edge off anxiety and stress management tool that you have left is going to need to be immediately discontinued cold turkey on this moment during the most anxiety provoking stressful of your life. So that's quite I am going through the diagnosis, the learning about the misectomy, and intense nicotine withdrawal for that entire three-way two-week period. Yeah. Yeah. It was, yeah, I think it got better in the third week, but that two weeks. And I was like, well, this is a good time. Anyway, that explains the importance of my blog. But, happily, Now it's been what? Like a four weeks and you're free from it.

So the night before we had a whole schedule. We had ironed it all out. Got the kids off to school, drove over to the hospital. You're allowed to take one person back with us. So I talked to Glenn and John and Abby and explain that I would like Abby to come back because she just had such a handle on all the stuff and I was also the only one who had been through like a ton of surgeries to know what is normal and what is not normal and what I should push back on and what I shouldn't and all of those things.

I did too because I I mean, it was such a blessing because it's like when certain things, you know, on that list of questions I've had that would be like, I want this and the doctor would be like, no, we're not going to do that because of this. And I, you know, I'm always ready to fight for, and so I just look at Abby and she'd be like, shaker head, yes, of like, no, that makes sense. You don't fight that. And I'd be like, okay, all right, we find that acceptable. And then if there were other things that they were like, no, and then she'd be like, give me the nod to be like, no, we just need to push on that one a little bit more and find our way through. So it was good because she's had all these surgeries and knows all the things. and very level headed to be like, what is reasonable? What's not?

One of the nurses who I did and looked at her goes, are you a famous soccer player? Yeah. She goes, yeah. And she goes, oh my god. She just walked out. And I was like, I'm really delighted. This is great, but they're gonna come back and enjoy me.

Okay, so we had our little binder already and all the questions. So we asked all the questions. Then, honestly, after that, Things got a little hazy. I recommend I'm trying to think of day of things. I recommend you ask about the nausea patch that really really helped me that they put behind your your head if you have any history of getting nauseous with anesthesia because it would have been awful to be nauseous on top of the pain.

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I mean, I think I felt really loved and really taken care of and it felt wild to be like, it's go time in that period, but I also felt like, okay, this is the part where it's not up to me. This is the part where I just have to like, after I asked my questions and after I feel like I get my questions answered, just let the people who have done this for a very long time and trust the path that got us to these people that they're going to do, what they do best. And I think that the front end work of pushing through and making sure I didn't swallow down any discomfort that I felt or disease, that's ironic, disease is disease, unease that I felt.

Disease is disease. That's interesting. An ease, not pretending I didn't have it earlier, helped me to have ease and be like, you were the people I chose. Here we go. Do your thing. So that was really good. Also, I feel like another thing I'll say. I know I mentioned teams before, but like anybody that you have in your life that has had Or even if you don't know someone personally asking people to talk to somebody who has had misexemies is so important because half of the things that worked out really, really well for me, including like having that recliner, including making sure I was triple on top of the anti constipation stuff. was from talking to people and not from doctors. So that there's nothing as important as talking to people who've been through it. And also don't trust the anti-conspiracy and stuff that they give you. It doesn't, at least for my body, doesn't work. It hasn't worked. It was among the most painful part of the process for me. And not good. So, by your smooth move T, drink it. If you have any history of constipation like that, it will help you and don't just rely on whatever it means. I had prescription into constipation and I had or at the counter and both of those still didn't work because of the narcotics they gave me for the first few days. Also have a medicine schedule. So you don't have to think about that. Ask someone to make that for you where you have your schedule set out of what you need to take at certain times. But yeah, I think going in, I felt like, okay, a lot of the work's already done. Now, I just need to submit to this and then focus on recovering.

I remember just being so weird that I don't remember avios in the room with you. And then they gave me a little something. And from there, I have no recollection. Oh, no, no. I remember I hugged you before you left. And then I laid down.

Oh, wish I could share this with you. Okay, so yes, so we hugged I lay down the game of the thing and then you walk. I don't remember the walking thing and then nothing no recollection of anything and then I wake up with this woman talking about how excited she was just me having a walk. I don't remember not being able to like keep My eyes open like I just felt so, so tired. But I wanted to keep my eyes open because I was like, what just happened? Cause I'm going to explain to me, what just happened? I'm here to know. I don't want to just go to sleep. And my mouth was really dry. And I was really thirsty and hungry. And so she gave me some pills and she gave me some like Graham crackers and ginger ale. And had me stay there for like half an hour. And then rolled me into another room where Abby was and I sat on the chair, which is crazy because I must have been super drugged because like the ability to sit on that chair like that doesn't seem possible in what happened in the days after, but then we were able to ask all our questions of her and then Dr. Fan came in and talked to us and They didn't, they just rolled us out to Parking Garage, John and Glennon and we got in the car and we came home.

Yeah, so I didn't even know Sergio was over. So I like she's like, do you want your phone? I'm like, sure. Then I was getting texts from you guys being like, it's over. Great. Yeah. And then they were like, are you there?

I mean, I couldn't believe how tired I was. That was my overarching. I'm like, I don't, I've never been this tired.

I'm like, you're not gonna believe how tired I am. Unbelievable. This is notable. Yeah, and then we came home and sweet job was just doing all the things with all the rushing around doing all the things.

She doesn't mess around. She's not like, I'm like, I can tell you to get better. You do what you need to do.

I don't know if we're ever going to be able to show this video, but I want to show people because it's very hard to explain. But when you get home, let's see if this will work. All right. So when you get this surgery, they will give you this special kind of bra that you're supposed to wear for like six weeks. And it sort of looks like a sports bra, but it has little circles that hang down that your drains come on. A lot of people say that drains are the most annoying part. There's pain, but then the most difficult part is you have to live with these drains for up to three weeks. I think on average it's two weeks. And what their drains are doing is they are removing fluid from your surgical area. So you get put into the side of you a little hole. It's a little hole on the side of you that then it's a catheter, right? So it's called maybe this thing. Yep, to catheter tube. A tube goes into the hole, and that's meant to drain the fluid from the surgical site. So then you have the drain coming down. And if you have a bilateral mastectomy you have a drain on each side so you can see here this is coming out of my tube draining into this bulb bulb.

Yeah, they say it looks like a football, but it actually looks like a grenade because you can see the little side of the tube where you empty the bulb looks like a little detonator, but yeah, it's a little plastic bulb. And so the bras especially designated to adhere the bulb. To the bra so it's not pulling down something you will want to have is a couple of these shirts either a belt or these shirts that have the pocket. Either one is fine about you can wear, but I think the shirts are more comfortable that the bulb can then. Sit in so it's not weighing on you and not putting pressure on the catheter. at the site of the drain. There's different kinds of coverings you have. Mine is called a biodear.

A biopatch, I think.

your job during recovery with these drains are what well it depends what they say for me it's I've been doing it once a day to both strains some people call it strain coming to something called milk or whatever the tubes. So what you're basically doing is making sure that the risk basically squeezing the tubes holding onto the end of it kind of like how you'd hold onto your hair to brush out a knot on the end of the hair you hold onto it so it doesn't pull and then you take an alcohol swab on your fingers and just pull it pull it tight again and pull it tight again with your fingers on it and that is working through all of the blood clots to keep the fluid flowing. And then once a day you also drain the bulbs to make sure that you're getting enough drainage and not too much drainage and to determine the time in which you can take the drains out. And most people say that if you when you have under 30 milliliters is what most people say you might have a lower threshold, but 30 milliliters in a 24 hour period her drain two days in a row. So like you're doing it every 24 hours and then you get to the time period where two days in a row you have less than 30 milliliters that comes out that that is a time where it's appropriate to remove the drain.

I think maybe lowest point is like just trying to get through the hardest parts of their recovery. Honestly, I think that for me at the one week mark turned a major. Turn like really felt a lot better at the one week mark. I know that's not true for a lot of people, but the first several days were really hard. A lot of pain. Even trying to lean back. I don't know how people go home and sleep in a bed because I couldn't even lean forward and back without it being painful, but I think Probably the lowest was just like, oh, I'm trying to get through this whole thing. And I kind of forgot that there's a whole like pathology thing after this.

Right. Like I don't like that. But honestly, I've been really, really lucky. I think it's got to be a lot. I would imagine for me, it would have been a lot harder. to go through this process without the possibility of innable sparing. I think that that's got a feel different in terms of the night before the surgery I remember being in the shower and thinking like, oh my god, this is my last shower for a long time work and actually just be in the shower and walk around the shower and then I was touching my breasts and holding them and being like, oh my god, this is my last time with you. our whole lives we've been together and then this is the last our last dance you know and feeling really strange about that and the John and I were talking about it after and like it doesn't feel totally like that actually because the part that I was touching in the shower is still there. You know, it still looks the same. I mean, it looks really whack right now. But it's still my nipple. It's still my area. Let's still my skin. And I think it would be much harder for me. And I don't know if it's true for others to have to be adjusting to seeing a different thing on me. Even with the scars, seeing the scars is weird, seeing your body kind of chopped up a little bit is weird, but knowing that it's just different stuff inside, but I can still feel the same outside is a comfort. And so I think that I really have been grateful that we found people who know how to do that. And I know I'm still not out of the woods like the pathology come back and they could have to take the right and a bowl, but it's been a comfort for this time. And I really feel for people who have to make all these adjustments that quickly.

We'll tell us exactly what they found in all the breast tissue to find out. What kind of cancer, how extensive it is, whether something we didn't talk about in the last episode is margins. Another reason to work with a very, very skilled surgeon, like Dr. Lucy Delacruz, who is my surgeon, is because the exactness and precision, especially if you're a small person, especially if you don't have a lot of fat in your breasts, especially if you have small breasts. So we're looking at me here. Like in my case, there is the margin for error is so small, especially because my cancer was like right close anteriorly and posteriorly, very close to the skin on the front of my breast and also going towards the back. wall, my chest wall. So when they cut out all the breast tissue in the misectomy, they then take that and they cut it into a bunch of slides and they look at it. And they're looking for a couple of things. They're looking for the cancer that exists there. What kind of is it? How extensive is it? What do we actually see in this? Because we end again in the biopsy. We only saw a little snapshot of one part. And they're also looking for what we call margins, which are, okay, here the margin is the distance between where the cancer ends and the tissue they took. Okay, so it's basically like if it's a coloring book and you're like coloring it in, you can't color right up against the line where you take it out, right? Because we need a barrier of clean, healthy tissue between the cancer And the cut where we take it out. So when we take out the tissue, we want to see the cancer end, then we want to see a barrier of clean tissue because that way we know that the tissue that's left behind is totally clean.

And has no cancer in it. That is really tricky to do in someone like me that has the cancer goes really close to the skin. There's not a barrier of fat there. So the margins are very important. You're supposed to have two millimeter margins to feel safe. It's very small. It's crazy. But if you have a two millimeter barrier of clean tissue, we feel good about that. Some people think that one millimeter is okay, one half millimeters is okay, whatever it is. But if you have any positive margins, meaning that you have no clean tissue between what you cut out and the tissue that's left. That's not safe because there could be cancer still there and still growing. That's called a positive margin. And then they have close margins, which are technically less than two millimeters. So in the case of positive margins, you have an issue in the case of close margins. You have to look really carefully and say, is this something we can deal with? we can live with or not, do we need to be probably looking into other therapies because there's a possibility given this close margin that there is some transference. There is some still existing inside of there.

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I love that idea. And I would love to know, I mean, My community has been absolutely ridiculous and beautiful and I would feel so grateful for that to be able to talk about that and also people should just if you've been through something hard and there's things that really worked for you email us or call us back because I would love to people are desperate, everyone is desperate to help. And so I would love to do a conversation about that.

But I know she just wrote back no kicking fences. Yeah, sister gets really into it. No, I'm not in my kicking fences era at the moment. Which has been every era prior to right now.

So it was, I wasn't planning on it. But again, like, at the one week mark, I just felt, I felt like something changed where I felt okay. And so it was, yeah, it was my first time putting on clothes that were not like, have this shirt for your misectomy clothes and for some in the car and then first time out of the house and he had a baseball game and we got there. I knew it was going to be too much to like be around people because actually infection is one of the key things you have to be worried about with all this. So I knew I couldn't be super around people. And also I just didn't have the energy to be around people. So I went with John John helps coach. So he has to get early to every game. Anyway, Bob, he had a night baseball game, which is really rare. They only have one of season starts at 7.30. It's under the light. It's very fun. So I got there super early and John set me up in what I effectively called the hinterland because it was basically like half a mile felt like it was like a half a mile from the baseball field up really high and behind this fence that was covered with ivy so I could honestly like barely see the field but I could see it and he'd just have me set up in a little chair. It was a beautiful night and I could just take the game in and I was just so happy to be there and I'm usually like screaming really loud at everything and all fired up and involved but I Wasn't I was just kind of there watching it and taking it in and it was so beautiful and an amazing game and Bobby got out of a little hitting slump which was a real victory for us all and it was just took it was it just I felt very grateful to be there and they felt like surreal to feel like oh wait there's going to be a there's going to be an after of this you know there's going to be like a not inside the house all consuming this is what we do now part of this there's going to be an after and and it felt really delightful felt really felt really grateful it is I feel really thankful and I don't know.

Well, I receive that and I'm grateful for that and I have tried to do that. And also, I have been doing this under what can only be the optimal most ridiculously lucky privilege position possible. At every stage that I'm navigating this, I know had not one of the tent poles that are surrounding me. Not been there. It would have been different. Think about it every step. I have a job that y'all are like, see you later. Go do what you have to do for a month plus now and granted family medical leave act allows if you're covered by that. For this to be covered for that purpose, as well as a caregiver. So look into that. But plenty of people are not in situations that are covered by FMLA. Plenty of people don't have the option to even get the screenings to begin with because they don't get paid if they leave work. Yep. So like all of this depends. me being here right now in this position depends on that ability. So I just feel like and having not to have to carry all the stress of the burden because I knew that three of you were just having all of the capacity to be able to take the time. Get the appointments that I needed have the conversations. that I need to have to come to the decisions. Like I'm very, very aware that I have the perfect storm, which enabled me to do this in a way that I can feel really good about. And it's very upsetting to me that I am ridiculous anomaly. And this, like I just, I don't think it's fair or right and everything about breast cancer is really There's a very political piece of this that I also want to talk about at some point. It's a very political as to why I could handle this with a lot of grace. And as to why I even found out about it at a time to make a long healthy life after this possible. You know, yeah, but it's So, I mean, I received that, and I thank you for that, and I've tried hard to do that, and also I wouldn't have had a part of do that if I didn't have the 100 things that I have, but I'm lucky enough to have, you know, it's a black woman or 40% more likely to die of breast cancer than white women, and it isn't just about availability of screenings. It's about they have more aggressive triple negative breast cancer, but do we know that? I don't think we do. think anyone knows that to the extent that they need to and I don't know that treatments or it's screenings are made more available as a result of that. I, you know, people with dense extraordinarily dense breaths, like the three of us are six times more likely to have kids or then your average bear, but we get a notification on our mammograms. I says, like, this may not be legit, but it doesn't say get your ass to an MRI because that's the only thing that can see your cancer. And that is political. Yeah. So I don't know. I think there's a lot. There's a lot that can be learned from this that I hope that we can do together. Yeah. But I feel really grateful. And I have had. This is a ridiculous thing, but I have had moments. where I've looked around at all of the encouragement and love and notes and gifts and funny little offerings that I've been given and truly thinking I feel so bad for people who don't have something terrible and public happen to them. because then how do they ever know how loved they are? I wouldn't have known that. And I know that that's a ridiculous like it sounds so polyana, but you just wouldn't know. And maybe people would take that over having this kind of diagnosis, but it's certainly a unique offering and insight to be like, wow. There's a lot of love and people that you didn't even know loved you or you didn't know that maybe you could rely on that heavily and. That you would never have found out but for something like this. Yeah, and that's a very cool gift.

I'm forever different and also in some ways the same. So don't expect me to drop that shit. We're still mad. Still mad about everything.