We Can Do Hard Things with Glennon Doyle - What Amanda’s Learned About Life, Love & Community (Post Surgery Pt 2)
Episode Date: June 6, 2024317. What Amanda’s Learned About Life, Love & Community (Post Surgery Pt 2) Amanda details surgery day, her healing process, and the role her community has played in getting her through it all. ... Discover: -The choice Amanda made about who came back with her for surgery; -Amanda’s scariest and lowest moments so far, as well as the most beautiful ones; and -Abby’s advice about how to approach surgeries and your relationship with your doctors; To hear the first two episodes about Amanda’s diagnosis, as well as the one before this, listen at the links below: -Episode 309 Amanda’s Diagnosis and What’s Next (Pt. 1) -Episode 310: Amanda’s Diagnosis and What’s Next (Pt. 2) -Episode 316: Amanda Returns Post Surgery: Here’s What She Wants You To Know To learn more about listener data and our privacy practices visit: https://www.audacyinc.com/privacy-policy Learn more about your ad choices. Visit https://podcastchoices.com/adchoices
Transcript
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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. 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 vasectomy.
All right, so take us to the day before. Let's just start the day before.
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 of 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 center or something,
connected to my cancer institute that I was working with,
my doctor, they have a deal with our local renaissance center
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 in two 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 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 godsend.
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 lazy boy situation was a specific kind. And then
they did all the work of connecting rent a center with cancer centers. I just, God bless
people who step in the gap of what people need and make this anyway. 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 you're basically just like,
lean forward and you're standing.
Yeah.
It's an incredibly helpful device.
And I should say that I don't even know
that it's a Lazy Boy brand.
Right, right.
I don't even know that that's the case,
but the point is it's a recliner chair
where it power activates with a button.
I never would have been able to do that lever.
Like I couldn't even doom 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 Tames, 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 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 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 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 gonna 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.
Pod Squad, she was of all of the things.
We had been through hell.
It was hell these 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.
And also, I just want to say,
this is for Amanda's specific surgery.
I don't want a 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.
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 you as it is to me,
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're damn right you do.
Okay, so you ask them specifically.
I felt so scared when they told you no.
I thought, you don't understand what you're doing here.
Like, this is her only will to live
and you've taken it away as she goes into surgery.
During the surgery just whatever. I don't care. We need her will to live. The point is confirm all of your things.
But seriously that made a difference in my happiness level going into that and in fact in my nausea. So
find that stuff out. Okay. And you had a headache the day of the surgery because you didn't have the headache.
Well, she was also in withdrawal for the other reason.
Tell them what else you had to do in the month before this.
Tell them this.
Or don't if you don't want to.
No, do. 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, nope, never have been. And then they say,
well, then why did you check the box of nicotine? If you've never been a. And then they say, well, then why do you, did you 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, what was that? Four years ago,
something like this. I realized that I needed something, I just want something for the love of God. So that day I went and picked up nicaric gum and thinking, you know, it's a little something.
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, like 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.
Specifically because, this is why it's so important to bring this shit up, because nicotine
contracts your...
Capillaries?
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.
So note to pod squad, you do not go in to these meetings
trying to be a good girl.
You don't go in and hide your shit.
They've heard all the shit before.
You just tell them everything.
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.
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 of your life.
So, Pod Squad, I am going through the diagnosis, the learning about the mastectomy and intense nicotine withdrawal for that entire 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 black coffee. But happily,
now it's been what? Like four weeks?
And you're free from it.
You're free from it.
Okay, so take us to the night before
and then the morning of.
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 were 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 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. So she just has the total lay of the surgical land.
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. It was a beautiful moment actually.
I just think we should linger there for a second
because first of all, your husband was so like
non-egoic about it, just was like,
yes, that makes sense that you take Abby.
And watching you and Abby walk back there together
was so emotional for me.
I don't know.
It just was like, 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 strength.
So if that surgeon needs an emergency poem,
I'm gonna be ready.
It was beautiful. It was beautiful. We all felt a sense of confidence watching
both of you go back there together.
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 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, you know, I'm always ready to fight for, and so I just look at Abby and
she'd be like, shake her head. Yes. I've like, no, that makes sense. You don't fight that.
And I'd be like, okay, all right. We, that is, 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 and what's not.
Yeah.
And 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.
I think it might've been because one of the nurses walked in and looked at her and goes,
are you a famous soccer player? She goes, yeah. And she goes, oh my God. She's walked out. And I
was like, I'm really delighted. This is great, but they're going to come back and then talk to me.
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.
I was ready to do whatever.
Okay, go ahead.
Okay, so we had our little binder already and all the questions.
So we asked 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 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. One of the
things that I think that is really important for anybody who's going through
this or anybody who's gonna support somebody going through this is this is
what the doctors do every day. This is not something you do every day and 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 like 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 gonna raise
and you wanna go into the surgery as calm
and as comfortable as possible.
So ask all the questions, that's all I'll say.
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.
Yep.
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How did you feel that morning?
What was your emotional state that morning?
Take us to your mindset that morning? 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 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 like making sure I didn't swallow down any discomfort
that I felt or disease, that's ironic.
Dis-ease is disease.
Unease that I felt.
Abby said that to me last week, which is why I'm laughing.
She said, did you know?
Sorry, go ahead.
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 TAMES 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 mastectomies 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 have been through it.
And also don't trust the anti-constipation stuff
that they give you.
It doesn't, 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 Oort 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 from this.
And then what do you remember
from waking up from the surgery?
So we went in, what time was it?
We were there at nine.
9 a.m.
Her surgery started at 11.
11, and then it was, the surgeons would come out
and say, like the first surgeon,
Dayla Cruz came out like an hour and a half
after it started and said, I'm done with my part. Went well. Yeah she is so fast man. And then the plastics was in there
and 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. Two and a half. Yeah and then you had a recovery time. So what do you remember from waking up and how you felt afterwards? I remember just being
so weird that I don't remember Abby 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 I remember I hugged
you before you left and then I laid down. You. Oh, no, no, I remember I hugged you before you left.
And then I laid down.
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.
I wish I could share this with you, Abby.
I know.
Okay, so yes, so we hugged, I laid down, they gave me the thing, and then you walked.
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 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.
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 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've been super drugged because like the ability to sit 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 then they just rolled us out to...
Parking garage, yeah.
John and Glennon and we got in the car and we came home.
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.
Oh, that's right. I forgot about that.
Yeah, so I-
Yes, I didn't even know surgery was over.
So I like, 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, great.
And I'm like, okay, good. And then they were getting texts from you guys being like, it's over, it went great.
And I'm like, okay, good.
And then they were like, are you there?
We saw pictures of your boobs.
They said it looked great.
It looks great.
And I'm like, awesome.
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.
Cause I, when you're like 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.
Wanted you to know all this stuff
that happened during that sleep time.
And sister, you just texted me,
and I was a little nervous,
because you just texted me,
I was giving you all the information,
which now I know was stupid,
because you were like on another planet.
But you just wrote back,
I had like all these things that I told you,
and then you just wrote back,
I am sooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo She's just on drugs. Okay. 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 so tired.
That was my overwhelming. I was shocked.
Yes, you were. You were. No questions about your boobs. No questions about anything. You were just like, why?
I'm like, y'all are not gonna believe how tired I am. Unbelievable.
This is notable.
Yeah.
And then we came home and Sweet John was just doing all the things with all the rushing
around doing all the things.
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 the Guinness, it was really adorable.
And 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? We are so relieved that you are okay, that you are okay.
And I thought, well, that's correct. We are so relieved.
And then she ran out. 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.
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 Amanda bends down and gets on her knees
so she could be eye level with Alice.
And I'm freaking out like, how are we gonna get her up?
But she was still on a little bit of drugs,
so it was okay.
Yeah, but I just am thinking this is gonna, I don't know.
It was the sweetest thing in the world.
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 like thinking,
I'm gonna have to hold your buttocks and prop you up
because you can't grab somebody's arms who's just had,
No.
you know, bilateral mastectomies.
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 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 to center or wherever that.
And then you had baskets.
Talk to people about the tubes.
The drains.
Oh, the drains.
This is an important mastectomy thing.
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 the 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 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?
This thing?
Yep, tube, 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.
A bulb. It's a bulb.
It looks like a grenade size plastic container.
Yeah.
They say it looks like a football,
but it actually looks like a grenade.
Cause 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 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.
Well, tegaderm is the strip that goes over
and then the bio, it's like a biopatch.
Biopatch, I think, yeah.
Biopatch and...
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.
And then tell them one of the most important parts
of your jobs during recovery with these drains are what?
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 on to 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 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 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 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.
What do you remember as the scariest
or lowest moments of your recovery?
And then I wanna talk about what were like some
high moments, if there were any.
I think maybe lowest point is like, 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 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.
It's like getting to a finish line that was so arduous.
And then somebody reminds you
there's a whole nother finish line.
Right. Like I don't like that.
But honestly, I've been really, really lucky.
I think it's gotta be a lot.
I would imagine for me,
it would have been a lot harder to go through this process
without the possibility of a nipple sparing.
I think that that's gotta 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.
Yeah.
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 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 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. 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 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.
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.
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. 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 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 we, 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 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.
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.
And is the other one negative margin
that you're in the clear?
Correct, yes.
It will be called negative margin.
So if they say to you,
when the pathology comes through negative margin,
that means yay.
It's plus two millimeters?
It's two millimeters or more, yes.
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 brain power it took
from our entire family to get through this,
I think, what about people who don't have that? And 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 is even the doctor and isn't the patient. It's like
an advocate, a doula, a something.
But in the absence of that, what do people do?
We will find that out.
And then lastly, do you think that you would ever be
interested in doing an episode about, you know,
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 like
what helps. And I mean little things like 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. We have no breakfast. We know
we're gonna eat till six because we're just like 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.
So could we maybe do an episode on that?
I love that idea.
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 about them.
Because I would love to, people are desperate,
everyone is desperate to help. And so I would love to, people are desperate, everyone is desperate to help.
And so I would love to do a conversation about that.
And if you do, if you've been through,
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,
you know, 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 747-205307.
And 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.
I wasn't worried about other people.
I was worrying about her and how into the games she gets
when she watches them.
Oh my God, and then her blood pressure.
I know, Abby just wrote back, no kicking fences.
Yeah, sister gets really intense.
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.
So tell us how that went when you finally ventured out
and what was that experience like?
Yes, 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 mastectomy clothes. And 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 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, Bobby
had a night baseball game, which is really rare. They only have one a season that starts
at seven 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 called the hinterland because it was basically like half a mile. It 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 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 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 it was an
amazing game.
And Bobby got out of a little hitting slump, which was a real victory for us all.
And it was just a, it was, it just, I felt very grateful to be there.
And it felt like surreal to feel like,
oh wait, there's gonna be an after of this.
There's gonna be like a not inside the house,
all consuming, this is what we do now, part of this.
There's gonna be an after.
And it felt really delightful.
Felt really, felt really grateful. I just I feel really thankful and I don't know
it's a beautiful night. 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 kind of 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 express them and to also, you know, 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. You've been really dealing with this
like one step at a time, which is true,
which is real, which is important.
You have handled things.
You've 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 lazy boy recliner. But like the way that John showed up for you,
I just want you to believe in all the fibers of your being
that like 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've included your community,
how thoughtful you were all the way through, how smart you've 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.
And I just, I commend you for up until this moment, how beautifully you've gone through
this process.
You've done an incredibly beautiful job. Well, I received 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 the 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. 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 and 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 needed 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 a ridiculous anomaly in 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 very political as to why I could handle this
with a lot of grace and 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 prayer to do that
if I didn't have the hundred things that I have that I'm lucky enough to have, you know.
Amen. 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.
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 treatments
or 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 cancer than your average bear, but we get a notification on our mammograms that
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.
Yep. 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 have 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 ridiculous,
like it sounds so Pollyanna, 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.
It's not nothing.
It's not nothing.
It's not nothing.
Well, 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.
This has been, 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. And she said, she's recovering from breast cancer now, 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. Yeah exactly, there's always that period after. Exactly. But don't worry, we'll get pissy and petty again.
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.
Grateful butt!
Okay, Pod Squad, we love you.
We'll see you here next time.
Bye.
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