What Amanda’s Learned About Life, Love & Community (Post Surgery Pt 2)
June 6, 2024
Glennon Doyle:
Welcome back to We Can Do Hard Things. Today, we are discussing mastectomy day. Okay? If you are not up to speed, Amanda was diagnosed with breast cancer. You’re just going to have to go back, and listen to the last episodes. Sister, in two sentences, it’s your story, you catch them up in two sentences, and then get us to mastectomy day. We want to know everything.
Amanda Doyle:
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 a 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 mastectomy.
Glennon Doyle:
All right. So, take us to the day before. Let’s just start the day before.
Amanda Doyle:
Okay. Yes. Okay, so, first of all, things that I think we did really well, and by that, I mean, you did really well is that you two came in two nights before the surgery.
Glennon Doyle:
Thank God.
Amanda Doyle:
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 get in order before. In some ways, that’s more of the Super Bowl than after.
Glennon Doyle:
Yes.
Amanda Doyle:
So, that was a godsend, if you can have support in the day, or two leading up, that feels really important to get your stations together, to get 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 La-Z-Boy with a giant handle that you had to pull, and that John and my dad set up, and couldn’t get upstairs.
Then my mom, because she has done all this research, was like, “Actually, do you know that …” I think it’s Rent-A-Center, or something, connected to my cancer institute that I was working with, my doctor there, they have a deal with our local Rent-A-Center furniture place where you can rent a La-Z-Boy for I think it was $180 for the whole month, and that includes them picking it up, bringing it to your house, it comes apart in two pieces, so they can bring it up to your bedroom, setting it up, and it’s a power-activated, so one of those ones where you can push it up, sit on it, and then bring it down.
That was an absolute godsend.
Glennon Doyle:
I just want to say, note to people, when I saw you in that chair, people who just find a need … Like, probably somebody was going through this with their friend, or themselves, and they realized how important this La-Z-Boy situation was, this specific kind, and then they did all the work of connecting Rent-A-Center with cancer centers.
God bless people, who step in the gap of what people need, and make this … Anyway-
Abby Wambach:
But to create this specific chair, that, and I can’t stress this enough, that standing up is a thing when you are recovering from any surgery really, but this one, specifically, that it literally stands you up, so that you don’t have to come from a deep squat to stand, that, basically, you just lean forward, and you’re standing.
Yeah. It’s an incredibly helpful device.
Amanda Doyle:
And I should say that I don’t even know that it’s a La-Z-Boy brand.
Glennon Doyle:
Right.
Amanda Doyle:
I don’t even know that that’s the case, but the point is is it’s a recliner chair where it power-activates with a button. I never would have been able to do that lever. I couldn’t even do the buttons on my shirt. It’s power-activated, you 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 godsend. My friend Thames, who had this surgery a couple of 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 have 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 of, 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 of, 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. I realized at the end that you’re a little loopy, you feel so grateful that things went well, that you didn’t ask all the questions, and 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, 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.
Glennon Doyle:
Pod Squad, we had been through hell. It was hell those two weeks. It was terrifying, we’ve never been so scared in our entire life. We made it. We made it. Everybody was so amazing, and well-behaved, and then those people told her she could not have coffee.
Abby Wambach:
Also, I just want to say, this is for Amanda’s specific surgery-
Glennon Doyle:
Right. So, maybe-
Abby Wambach:
I don’t want to blanket statement that everybody is allowed to have black coffee, because we have no idea, but we found out, at the hospital, that Amanda was, in fact, allowed to have black coffee the morning of.
Amanda Doyle:
We 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. Okay? You don’t listen to the anesthesiologist. You go to your surgeon, and if black coffee is as important to you, as it is to me, you say, “Here is my question, am I allowed to have black coffee with no cream on the morning of my surgery?” Your surgeon is going to say, “You’re damn right you do.” Okay?
So, you ask them, specifically-
Glennon Doyle:
I felt so scared when they told you no. I thought, “You don’t understand what you’re doing here. This is her only will to live, and you’ve taken it away as she goes into surgery.”
Amanda Doyle:
[inaudible 00:09:07] during the surgery. Just whatever. I don’t care. Whatever you want to do.Glennon Doyle:
We need her will to live.
Amanda Doyle:
The point is confirm all of your things. Seriously, that made a difference in my happiness level going into that, and, in fact, in my nausea, so find that stuff out. Okay.
Abby Wambach:
And you had a headache the day of the surgery, because you didn’t have-
Amanda Doyle:
Yeah. Exactly.
Glennon Doyle:
Well, she was also in withdrawal for the other reason. Tell them what else you had to do in the month before this.
Amanda Doyle:
Oh my God. Oh my God.
Glennon Doyle:
Tell them this.
Amanda Doyle:
Okay.
Abby Wambach:
Or don’t, if you don’t want to.
Glennon Doyle:
No, do. No, this is great.
Amanda Doyle:
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, “Nope. Never have been.” Then they say, “Well, then why did you check the box on nicotine, if you’ve never been a smoker?” You say, “Well, I accidentally got addicted to nicotine gum.”
So, here’s how it happened, when I decided to stop drinking … What was that? Four years ago? Something like this. I realized that I needed something, just something-
Glennon Doyle:
Something.
Amanda Doyle:
So, I could just have something for the love of God, so that day, I went and picked up Nicorette gum. Thinking, “Just something to take the edge off. Why not?”
So, I chewed that to take the edge off, and then, accidentally, got very addicted to the nicotine gum. So, I am in these meetings with the doctors having, yet again, the very awkward, it always makes them laugh, conversation about … When they’re going over my history before the pre-op with the surgeons, and they’re like, “Oh, you can’t have any nicotine in your system. You have to stop that right now.”
This is why it’s so important to bring this shit up, because nicotine contracts your-
Abby Wambach:
Capillaries?
Amanda Doyle:
Blood vessels? 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 your surgery.”
Glennon Doyle:
So, note to Pod Squad, you do not go into these meetings trying to be a good girl. You don’t go in-
Amanda Doyle:
Yeah. You tell them all this shit.
Glennon Doyle:
… and hide your shit.
Amanda Doyle:
They’ve heard all this shit before. You just tell them everything.
Glennon Doyle:
You tell them everything. It doesn’t matter what they think of you. It only matters that you don’t have something that you’re bringing into the surgery that will hurt you.
Amanda Doyle:
Right. Exactly. So, then they tell me, “Okay, your 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”-
Glennon Doyle:
Awful.
Amanda Doyle:
… “of your life.”
Glennon Doyle:
Awful.
Amanda Doyle:
So, Pod Squad, I am going through the diagnosis, the learning about the mastectomy, and intense nicotine withdrawal for that entire-
Abby Wambach:
Three weeks.
Amanda Doyle:
… two week period.
Abby Wambach:
Yeah.
Amanda Doyle:
Yeah.
Glennon Doyle:
Unbelievable.
Amanda Doyle:
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 black coffee.
But, happily, now it’s been, what? Four weeks?
Glennon Doyle:
And you’re free from it.
Amanda Doyle:
Yeah.
Glennon Doyle:
You’re free from it. Okay, so-
Amanda Doyle:
I know.
Glennon Doyle:
… take us to the night before, and then the morning of.
Amanda Doyle:
Okay. 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 Glennon and John and Abby, and explained that I would like Abby to come back, because she just had such a handle on all this stuff, and I was also the only one who had been through 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.
So, she just has the total lay of the surgical land.
Abby Wambach:
Which was the honor of my whole existence on Planet Earth. When that moment happened, I felt super honored, and, also, capable, and ready to go take care of you.
Glennon Doyle:
It was a beautiful moment actually. I just think we should linger there for a second, because, first of all, your husband was so non-egoic about it. Just was like, “Yes. That makes sense that you take Abby.”
Watching you and Abby walk back there together was so emotional, for me. I don’t know. She was the exact right person for you, and you knew she would ask all the right questions, and she wouldn’t get overwhelmed, and she would advocate, and you guys were just such a beautiful team to watch walk away, and John and I were both like, “Good call.”
That is actually what I mentioned in the last episode that I was texting with Tig, that’s what I was telling her, I was like, “Sister just chose Abby to go back with her, so her husband and I are sitting in the waiting room,” and Tig said Stephanie said, “That’s a good call,” and I said, “We’re all here for our strengths, so if that surgeon needs an emergency poem, I’m going to be ready.” It was beautiful.
Amanda Doyle:
Yeah. I know.
Glennon Doyle:
It was beautiful. We all felt a sense of confidence watching both of you go back there together.
Amanda Doyle:
I did too, because … It was such a blessing, because it’s like when certain things on that list of questions I’ve had, that I’d be like, “I want this,” and the doctor would be like, “No. We’re not going to do that, because of this,” and I’m always ready to fight, and so I’d just look at Abby, and she’d shake her head yes of, “No, that makes sense. You don’t fight that.” I’d be like, “Okay. All right. We find that acceptable.”
Then if there were other things that they were like, “No,” and then she’d 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 levelheaded to be like, “What is reasonable and what’s not.”
Glennon Doyle:
Yeah.
Amanda Doyle:
Yeah.
Glennon Doyle:
Then when she finally came out, she spent her time taking selfies with all the nurses, because she thought maybe that would help them be extra nice to you, and I said, “I don’t think that’s how hospitals work. I hope not.”
Amanda Doyle:
I think it might have been, because one of the nurses walked in, and looked at her, and goes, “Are you a famous soccer player?” She goes, “Yeah.” She goes, “Oh my God,” and she just walked out. I was like, “I’m really delighted, this is great, but they’re going to come back in, and talk to me. Right?”
Glennon Doyle:
And then she said, “You take selfies too.” I said, “Babe, no one’s asking me for selfies. That’s humiliating. I can’t just walk up to people and say, ‘Do you want a selfie?’ They don’t know who the hell I am. I’m doing the best I can.”
Abby Wambach:
I was ready to do whatever.
Glennon Doyle:
Okay. Go ahead.
Amanda Doyle:
Okay, so we had our little binder all ready, and all the questions, so we asked all the questions. Then, honestly, after that, things got a little hazy. 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 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.
Abby Wambach:
One of the things that I think that is really important for anybody who is going through this, or anybody who is going to support somebody going through this is this is what the doctors do every day.
This is not something you do every day. This is a very confusing, and a scary process, and they seem, because this is what they do, and they’re experts at what they do, that this is no big deal, and because of that, sometimes it prevents people from asking the question, or from saying, “I don’t understand that.” Right? Because we don’t want to look stupid. They seem like they’re uber-confident.
But we asked a lot of repeat questions to the different doctors. Right? So, your surgeon would come in, your plastic surgeon would come in, the anesthesiologist would come in, and then all the residents would come in, and I want to advocate for not just you, in the moment, but for all the people out there that’s just like, “You can say, ‘I don’t understand what you just said, and I’m not sure what you said,’ or, ‘What does that mean?”
That is something that is so important, because your blood pressure is going to raise, and you want to go into the surgery as calm, and as comfortable as possible, so ask all the questions. That’s all I’ll say.
Amanda Doyle:
Yeah.
Abby Wambach:
And write them down. Have them in a binder. Have them, like Sister said, separated between which doctors to ask the questions to. That was really helpful.
Amanda Doyle:
Yup.
Glennon Doyle:
How did you feel that morning? What was your emotional state that morning? Take us to your mindset that morning.
Amanda Doyle:
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 after I ask 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 downy any discomfort that I felt, or disease … That’s ironic, disease is disease. Unease that I felt.
Glennon Doyle:
Abby said that to me last week, which is why I’m laughing. She said, “Did you know …” Sorry.
Amanda Doyle:
It’s wild. Right? Disease is disease. That’s interesting. Unease, not pretending I didn’t have it earlier helped me to have ease, and be like, “You are 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 Thames before, but 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 mastectomies is so important, because half of the things that worked out really, really well, for me, including 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 there’s nothing as important as talking to people who have been through it.
And, also, don’t trust the anti-constipation stuff that they give you. It, at least, for my body, doesn’t work, hasn’t worked. It was among the most painful part of the process, for me, and not good.
So, buy your Smooth Move tea, drink it. If you have any history of constipation like that, it will help you, and don’t just rely on whatever meds. I had prescription anti-constipation, and I had over-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 up of what you need to take at certain times.
But, yeah, I think going in, I felt like, “Okay. A lot of the work is already done, now I just need to submit to this, and then focus on recovering from this.”
Glennon Doyle:
Then what do you remember from waking up from the surgery?
Amanda Doyle:
So, we went in-
Glennon Doyle:
What time was it? We were there at-
Abby Wambach:
9 A.M. Her surgery started at 11.
Glennon Doyle:
11, and then the surgeons would come out, and say … The first surgeon, Dela Cruz came out, an hour and a half after it started, and said, “I’m done with my part.”
Amanda Doyle:
Yeah. She is so fast, man.
Glennon Doyle:
Then the plastics was in there. Then Dr. Fan came out maybe an hour and a half later, so we were getting updates along the way, but the whole procedure was done I think in three hours-
Abby Wambach:
Two and a half.
Glennon Doyle:
Yeah, and then you had a recovery time, so what do you remember from waking up, and how you felt afterwards?
Amanda Doyle:
I remember just being so weird, that I don’t remember … I was in the room with you, and then they gave me a little something, and, from there, I have no recollection. Oh, no, no, no. I remember I hugged you before I left, and then I laid down.
Abby Wambach:
You laid down, and you went left, and I walked right, so I walked with you all the way to the part where you went down this one hallway, but I could tell your eyes were … You were already somewhere different. I was excited for you too. I was like, “Gosh”-
Amanda Doyle:
“I wish I could share this with you all.”
Abby Wambach:
I know.
Amanda Doyle:
Okay. So, yes. We hugged, I laid down, they gave me the thing, and then you walked … I don’t remember the walking thing. Then nothing, no recollection of anything, and then I wake up with this woman talking about how excited she was to just meet Abby Wambach, and I’m like, “What’s happening? I don’t understand what’s happening.”
I remember not being able to keep my eyes open. I just felt so, so tired, but I wanted to keep my eyes open, because I was like, “What just happened? Can someone explain to me what just happened? I’m eager to know. I don’t want to just go to sleep.” My mouth was really dry, and I was really thirsty, and hungry, and so she gave me some pills, and she gave me some graham crackers, and ginger ale, and had me stay there for 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 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. Then they just rolled us out to-
Abby Wambach:
The parking garage. Yeah.
Amanda Doyle:
… John and Glennon, and we got in the car, and we came home.
Abby Wambach:
One of the things that I know to be true for the times that I’ve had surgery is you then get your phone back, and you’re alone in bed, and I have been alone in bed with my phone, and I’m like, “What the fuck happened? I don’t know anything that happened. I don’t remember the nurse telling me everything was fine”-
Amanda Doyle:
Oh, that’s right. I forgot about that.
Abby Wambach:
Yeah. So, I-
Amanda Doyle:
Yes. I didn’t even know surgery was over, so she’s like, “Do you want your phone?” And I’m like, “Sure.” Then I was getting texts from you guys being like, “It’s over.” I’m like, “Great.” I’m like, “Okay. Good.”
Abby Wambach:
Yeah.
Amanda Doyle:
Then they were like, “Are you there? We saw pictures of your boobs. They said it looked great. It looks great.” I’m like, “Awesome.”
Abby Wambach:
Yeah. I wanted for you, and this is just for anybody in surgery, is if you get an update from the surgeons, that update is probably coming to the waiting room folks prior before you even knew, so I wanted you to know, A, if they hadn’t come and told you, and, B, I wanted you to know that we knew, because after surgery, I didn’t know if your hands would be able to work, but I knew you’d be able to turn your phone on.
I wanted you to know all this stuff that happened during that sleep time.
Glennon Doyle:
And Sister, you just texted me … And I was a little nervous, because you just texted me, and I was giving you all the information, which now I know is stupid, because you were on another planet, but you just wrote back … I had all these things that I told you, and then you just wrote back, “I AM SOOOOO SLEEPY,” in all caps. I was like, “Oh my God.” It felt like something I’d get from Amma. It’s like, “Is she okay?” Abby’s like, “No. It’s okay. She’s just on drugs.” I’m like, “Okay. Good.”
Amanda Doyle:
I couldn’t believe how tired I was. That was my overarching … I’m like, “I’ve never been this tired. I’m so tired.” That was my overwhelming … I was shocked.
Glennon Doyle:
Yes. You were. You were. No questions about your boobs, no questions about anything. You were just like, “Why”-
Amanda Doyle:
I’m like, “Y’all are not going to believe how tired I am. Unbelievable. This is notable.”
Glennon Doyle:
Yeah. Then we came home, and Sweet John was just doing all of the things with all the rushing around, doing all the things. So sweet.
Amanda Doyle:
We pulled into your driveway, and dad was standing at the end of the driveway, holding a Guinness at 3 P.M., because any excuse to celebrate with a Guinness. It was really adorable.
Then Alice ran out of the front door. She had written a sign that was on the front door that said … It did not say, “Get well soon,” because that’s not Alice’s jam. It said, “We are so relieved that you are better.” Right?
Glennon Doyle:
“We are so relieved that you are okay.”
Amanda Doyle:
“That you are okay,” and I thought, “Well, that’s correct. We are so relieved.” Then she ran out-
Glennon Doyle:
Yeah. She doesn’t mess around. She’s not like, “I’m not going to tell you to get better. You do what you need to do.”
Abby Wambach:
I know she ran out, and, Sister, I just want to say this, you pissed me off in the first three seconds of being home, because-
Glennon Doyle:
Shit.
Abby Wambach:
… Amanda bends down, and gets on her knees, so she could be eye-level with Alice, and I’m fucking freaking out like, “How are we going to get her up?”
Glennon Doyle:
But she was still on a little bit of drugs, so it was okay.
Abby Wambach:
Yeah, but I just am thinking, “This is going to …” I don’t know.
Glennon Doyle:
It was the sweetest thing in the world.
Abby Wambach:
And it was so sweet, and I was still so like, “Oh, gosh,” and you, actually, were able to stand up on your own without needing any … I was thinking, “I’m going to have to hold your buttocks, and prop you up,” because you can’t grab somebody’s arms whose just had a bilateral mastectomy.
Glennon Doyle:
So, tell us what you remember about the early parts of being home, and recovery. You had stations set up, you had one in the living room, and then you had another station upstairs that had the chair that we had gotten from Rent-A-Center, or wherever, and then you had baskets. Talk to people about the tubes.
Abby Wambach:
The drains. Yeah.
Glennon Doyle:
The drains.
Amanda Doyle:
Yeah. Yeah. Okay-
Glennon Doyle:
This is an important mastectomy thing.
Amanda Doyle:
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 me 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 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 the 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? Is that what it’s called, Abby?
Abby Wambach:
Mm-hmm.
Amanda Doyle:
This thing?
Abby Wambach:
Yup. Tube. Catheter.
Amanda Doyle:
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.
Glennon Doyle:
It’s a bulb. It looks like a grenade-sized plastic container.
Amanda Doyle:
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, it looks like a little detonator, but, yeah, it’s a little plastic bulb.
So, the bra is, 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, a belt 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 Bioderm. Is that what it is?
Abby Wambach:
Well, Tegaderm is the strip that goes over, and then the bio, it’s like a Biopatch-
Glennon Doyle:
Bio touch?
Abby Wambach:
… a Biopatch-
Amanda Doyle:
A Biopatch I think. Yeah. Biopatch, and-
Abby Wambach:
The little circle that goes over the drainage site is a Biopatch, and then there’s a clear plastic that goes over all of it, which is called Tegaderm.
Glennon Doyle:
And then tell them one of the most important parts of your jobs during recovery with these drains are what?
Amanda Doyle:
Well, it depends what they say. For me, I’ve been doing it once a day to, both, strain, some people call it strain, some people call it milk, or whatever, the tubes. So, what you’re, basically, doing is making sure that the …
It’s, basically, squeezing the tubes, holding onto the end of it, like 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 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.
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 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, per drain, two days in a row, so 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.
Glennon Doyle:
What do you remember as the scariest, or lowest moments of your recovery? Then I want to talk about what were some high moments, if there were any.
Amanda Doyle:
I think maybe lowest point was just trying to get through the hardest parts of the 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 are 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, “Oh, I’m trying to get through this whole thing,” and I forgot that there’s a whole pathology thing after this.
Glennon Doyle:
It’s like getting to a finish line that was so arduous, and then somebody reminds you there’s a whole other finish line.
Amanda Doyle:
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 nipple-sparing.
I think that that’s got to 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 where I can 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 our last dance,” and feeling really strange about that.
John and I were talking about it after, and it doesn’t feel totally like that actually, because the part that I was touching in the shower is still there. It still looks the same. It looks really whack right now, but it’s still my nipple, it’s still my areola, it’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 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.
I know I’m still not out of the woods. The pathology could come back, and they could have to take the right nipple, but it’s been a comfort for this time, and I really feel for people who have to make all of these adjustments that quickly.
Glennon Doyle:
Can you remind us of what we’re waiting for with the pathology? I think we didn’t talk about that this episode, so now we’re nine days post-mastectomy, and we are waiting for the final pathology, which is what? And will mean what?
Amanda Doyle:
It will 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 De La Cruz, 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, in my case, the margin for error is so small, especially because my cancer was right close, interiorly and posteriorly, very close to the skin on the front of my breast, and then also going towards the back wall, my chest wall.
So, when they cut out all the breast tissue in the mastectomy, 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 is it? How extensive is it? What do we actually see in this? Because, again, in the biopsy room, we 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, if it’s a coloring book, and you’re 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.
Glennon Doyle:
Yes.
Amanda Doyle:
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 and a 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.
Then we 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.”
Abby Wambach:
Is the other one negative margin? That you’re in the clear.
Amanda Doyle:
Correct. Yes.
Glennon Doyle:
It would be called negative margin, so if they say to you when the pathology comes through, “Negative margin,” that means yay?
Abby Wambach:
It’s plus two millimeters?
Amanda Doyle:
It’s two millimeters or more. Yes.
Glennon Doyle:
Okay.
A couple more things that we could close with. First of all, I want to know if there’s anything else that you want to say about mastectomy day, or leave people with before we close. Second of all, I want to make sure that when we get to this doctor, that we figure out, and offer people, what do you do to get all of this help if you don’t have five people …
When I think about how much brainpower it took from our entire family to get through this, I think, “What about people who don’t have that?” I know there are resources, I know there are places to go to find community around this, and we will find those places, and offer them to you when we do the expert, because it really just feels like there should be another person in every appointment, that isn’t even the doctor, and it isn’t the patient. It’s an advocate, a doula, a something, but, in the absence of that, what do people do? We will find that out.
Then, lastly, do you think that you would ever be interested in doing an episode about … When I think about spending that time at your house, and the amount of community support, and the way people showed up in a million different ways for you, and your community, I do wonder if we could do an episode, at some point, about what helps?
I mean little things. I’m thinking about the people that showed up with breakfast instead of dinner, and we were like, “Whoa, that’s creative, and helpful, because we have so many dinners.”
Amanda Doyle:
And we have no breakfast.
Glennon Doyle:
No one eats until six, because we’re just doing the best we can. Just tiny little things that you could tell, “Oh, that person’s been through something like this, because they know exactly what to send.”
Abby Wambach:
Yeah.
Glennon Doyle:
So, could we maybe do an episode on that?
Amanda Doyle:
I love that idea.
Glennon Doyle:
Okay.
Amanda Doyle:
I love that idea, and I would love to know … My community’s 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-
Glennon Doyle:
Yes.
Amanda Doyle:
… because I would love to … People are desperate, everyone is desperate to help, and so I would love to do a conversation about that.
Glennon Doyle:
It doesn’t have to be mastectomy surgery. If you’ve been through a medical thing, and people have shown up for you in ways that were really helpful, and creative, just please call us, and we’ll talk about it. We’ll do a whole episode on that, so we can know how to show up for each other, because we all want to.
It’s 747-200-5307. Also, if you know organizations that offer support to people who don’t have a support team, let us know that there too. I think that’s really important.
So, before we go, can you talk to us about you scared us the other day, because you said you were on your way to Bobby’s baseball game, and I was like, “Oh my God. Please don’t let anyone touch you, or breathe near you, or hug you, or anything”-
Abby Wambach:
I wasn’t worried about other people. I was worrying about her, and how into the games she gets when she watches them-
Glennon Doyle:
God. Then her-
Amanda Doyle:
Abby just wrote back, “No kicking fences.”
Glennon Doyle:
Yeah. Sister gets really intense.
Amanda Doyle:
I was like, “Don’t worry. I’m not in my kicking fences era at the moment,” which has been every era prior to right now.
Glennon Doyle:
So, tell us how that went when you finally ventured out, and what was that experience like?
Amanda Doyle:
Yes. I wasn’t planning on it, but, again, at the one week mark, I just 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 mastectomy clothes.”
First time 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 be around people, because, actually, infection is one of the key things you have to be worried about with all of 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, Bobby had a night baseball game, which is really rare. They only have one a season. It starts at 7:30. It’s under the lights, and it’s very fun.
So, I got there super early, and John set me up in what I affectionately call the hinterland, because it was, basically, half a mile … It felt like it was a half a mile from the baseball field, up really high, and behind this fence that was covered with ivy, so I could, honestly, barely see the field, but I could see it.
He just had me set up in a little chair, and 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 screaming really loud at everything, and all fired up, and involved, but I wasn’t. I was just there watching it, and taking it in, and it was so beautiful, and it was an amazing game. Bobby got out of a little hitting slump, which was a real victory for us all.
I felt very grateful to be there, and it felt surreal to feel like, “Oh, wait. There’s going to be an after of this. There’s going to be a not inside the house all-consuming, ‘This is what we do now’ part of this. There’s going to be an after,” and it felt really delightful. I felt really grateful. I feel really thankful, and … I don’t know. It was a beautiful night.
Abby Wambach:
Can I say this one thing? Because I just think that the way you have handled going through this whole process, to me, having gone through many processes, not mastectomies, but processes that were, potentially, devastating, I think it’s important to tell you that I really feel like this is true, that you handled it pretty impeccably.
Witnessing you learn everything about this, teach us about it, welcome us into it, and to watch you also have frustrations, and to also express them, and to also … I think on the very first podcast, you said that you were going to emotionally deal with this later. I actually think you’ve been emotionally handling this so beautifully all the way through.
Amanda Doyle:
Really? Okay.
Abby Wambach:
You’ve been dealing with this one step at a time, which is true, which is real, which is important. You have handled things. You have compartmentalized what you needed to to deal with some stuff after.
You’ve had to do this while parenting small children. You’ve had a husband, who has shown up in ways that you might not see, because you’re upstairs on your La-Z-Boy recliner, but the way that John showed up for you, I just want you to believe in all the fibers of your being, that I could not have done this better than you, and I think I’m really good at this shit.
You have handled this beautifully. The way you have included your community, how thoughtful you were all the way through, how smart you’ve been, how you had to make these decisions on your own. This is your body.
I commend you for, up until this moment, how beautifully you’ve gone through this process. You’ve done an incredibly beautiful job.
Amanda Doyle:
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, privileged 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.
Glennon Doyle:
Yup.
Amanda Doyle:
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 and the burden, because I knew that the 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 needed to have to come to the decisions, 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 a ridiculous anomaly, in this.
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 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.
Glennon Doyle:
Yeah.
Amanda Doyle:
So, I receive that, and I thank you for that, and I have tried hard to do that, and, also, I wouldn’t have had a prayer to do that, if I didn’t have that hundred things that I have, that I’m lucky enough to have.
Abby Wambach:
Amen.
Amanda Doyle:
Black women are 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. I don’t think anyone knows that, to the extent, that they need to, and I don’t know that screenings are made more available.
As a result of that, people with dense, extraordinarily dense breasts, like the three of us, are six times more likely to have cancer than your average bearer, but we get a notification on our mammograms that says like, “This might 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.
Glennon Doyle:
Yup.
Amanda Doyle:
So, I don’t know. I think there’s a lot that can be learned from this, that I hope that we can do together.
Abby Wambach:
Yeah.
Amanda Doyle:
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.
Glennon Doyle:
Yeah.
Amanda Doyle:
And I know that that’s a ridiculous … It sounds so Pollyanna, but you just wouldn’t know. 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, and that’s a very cool gift.
Glennon Doyle:
It’s not nothing. It’s not nothing.
Amanda Doyle:
It’s not nothing.
Glennon Doyle:
No. I think it’s amazing, and beautiful that you’re already turning this into something that can offer other people a little bit of solidarity, information. You’re wonderful.
We will have experts on to get into this stuff more, the details, but, in the meantime, Sissy, we love you so much. We admire you so much. I don’t know. I was talking to a friend who has gone through this, and I just said, “All I know is that I will never be the same after this, and I don’t ever want to be.”
She’s recovering from breast cancer now, and she said, “All right. Just don’t go around telling people that, because I told people that I was enlightened forever after my breast cancer, and now it’s been a year, and I’m pissy and petty again, and now people wonder why. So, just don’t announce that you’re permanently enlightened.”
Amanda Doyle:
Yeah. Exactly. There’s always that period after. Exactly.
Glennon Doyle:
So, don’t worry, we’ll get pissy and petty again. Okay?
Amanda Doyle:
Yeah. Exactly. I’m forever different, and also, in some ways, the same, so don’t expect me to drop that shit. I’m still mad. I’m still mad about everything.
Glennon Doyle:
Grateful, but-
Amanda Doyle:
Yeah.
Glennon Doyle:
Okay, Pod Squad, we love you. We’ll see you here next time. Bye.
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We Can Do Hard Things is created, and hosted by Glennon Doyle, Abby Wambach, and Amanda Doyle in partnership with Audacy. Our executive producer is Jenna Weiss-Berman, and the show is produced by Lauren LoGrosso, Allison Schott, Dina Kleiner, and Bill Schultz.