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

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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 a...

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 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 of that in those three episodes.

And today we're talking about

what to expect when you're expecting a mastectomy.

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

Super Bowl than after.

Yes.

So that was a godsend.

If you can have support in the day or two leading up, that feels really important to get your like stations together, to get, you know, your places where you're going to have.

the blankets you need, the medicine you need, the cozy spots where you think you're going to sleep, all those things.

So the

super important thing, and I'm laughing at myself because I only spent like 20 hours on Facebook Marketplace finding a used off-brand lazy boy with a giant handle that you had to pull, and that John and my dad set up and couldn't get upstairs.

And then, my mom, because she has done all this research, was like, actually, do you know that I think it's a rent-a-center or something?

Connected to my cancer institute that I was working with, my doctor,

they have a deal with our local rent-a-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 push it up, sit on it, and then bring it down.

That was an absolute godsend.

I 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 I don't even know that that's the case.

But the point is, it's a recliner chair where it power activates with the button.

I never would have been able to do that lever.

Like I couldn't even do the buttons on my shirt.

It's power activated.

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 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 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 for the post-op after.

And it was really, really

important to have those.

And then also, you just need to ask all of them.

Like I realized at the end that, you know, you're a little loopy, you're like, you feel like so grateful that things went well that you didn't ask all the questions.

And like, just ask every single one of them.

Their job is to answer your questions.

You wrote them down for a reason.

Ask them, even if they seem redundant, but they need to be typed out because you can't rely, or at least I couldn't rely, on

me knowing what I needed to know and having them organized by

person you're going to be speaking to was huge.

So, all 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 off.

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 black coffee is as 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 going to say, you're damn right you do.

Okay.

So you ask that.

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 before we get to 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 to.

Yeah.

Well, she was also in withdrawal for the other reason.

Tell them what else you had to do in the month before they got it.

Tell them this.

Okay.

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 do you check the box on 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,

just something up there.

I was like, I just need something for the love of God.

So that day I went and picked up nicotine 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.

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.

Awful.

So, Pot 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 on 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 a 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 the last 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 going to be ready.

It was beautiful.

Yeah.

It was beautiful.

I know.

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, of like, no, that makes sense.

You don't fight that.

And I'd be like, okay.

All right.

We, that is, we find find that acceptable

and then if 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 and very level-headed to be like what is reasonable and what's not yeah 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 have been.

One of the nurses walked in and looked at her and goes, are you a famous soccer player?

And she goes, yeah.

And she goes, oh my God.

She just walked out.

And I was like, I'm really delighted.

This is great.

But they're going to come back in and 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 at 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 all ready and all the questions.

So we asked all the questions.

Then,

honestly, after that,

things got a little hazy.

I recommend.

I'm trying to think of Day of Things.

I recommend you ask about the nausea patch that really, really helped me that they put behind your 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 going to 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 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.

Yeah, and write them down, have them in a binder, have them, like sister said, you know, separated between which doctors to ask the questions to.

That was really helpful.

Yep.

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How did you feel that morning?

Like what was your emotional state that morning?

Take us to your mindset that morning.

I mean, I think,

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.

Disease is disease.

Unease that I felt.

Abby said that to me last week, which is why I'm laughing.

She said, did you know?

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 over the counter and both of those still didn't work because um 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 is 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 9 a.m.

Her surgery started at 11.

11.

And then it was the surgeons would come out and say, like the first surgeon, De La 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 it 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 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.

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 Walmach.

And I was like,

I don't understand what's happening.

I like, I remember not being able to

keep

my eyes open.

Like, I just felt so, so tired.

But I wanted to keep my eyes open because I was like, what just happened?

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 like graham crackers and ginger ale

and had me stay there for like half an hour and then rolled me into another room where Abby was.

And I sat on the chair, which is crazy because I must have been super drugged because like the ability to sit on that chair like that doesn't seem possible in what happened in the days after but then we were able to ask all our questions of her and then dr fan came in

and talked to us

and

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.

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.

It went great.

I was 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.

Because 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.

I 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 wrote, you just wrote back, I had like all these things that I told you.

And then you just wrote back, I am so

sleepy

in all caps.

And I was like, oh my God.

Like, it felt like something I'd get from Emma.

I was like, is she okay?

And Abby was like, no, no, it's okay.

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,

what?

I'm like, yo, you're not going to 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.

Well, 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.

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 fucking freaking out like how are we going to 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 going to have to hold your buttocks and prop you up because you can't grab somebody's arms who's just had,

you know, bilateral masectomies.

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.

And then you had baskets.

Talk to people about the tubes.

The drains.

The drains.

Yeah, yeah.

This this is an important isectomy 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.

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 grenade because you can see the little side of the tube where you empty the bulb looks like a little detonator.

But yeah, it's a little plastic bulb.

And so the 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?

Well, tagoderm is the strip that goes over and then the bio, it's like a biopatch.

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 all of it, which is called Tegader.

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 on to your hair to brush out a knot on the end of the hair.

You hold on to it so it doesn't pull.

And then you take an alcohol swab on your fingers and just pull it, pull it tight again and pull it tight again with your fingers on it.

And that is working through all of the blood clots to keep the fluid flowing.

And then once a day, you also drain.

the bulbs to make sure that you're getting enough drainage and not too much drainage and to determine the time in which you can take

the

drains out and most people say that if you

when you have under 30 milliliters is what most people say you might have a lower threshold but 30 milliliters in a 24 hour period 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 want to 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 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 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

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 a 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.

Well, 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 is 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.

Yes.

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.

And 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.

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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?

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 isn't even the doctor and it 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 in your community?

Yeah.

I do wonder if we could do an episode at some point about like, what helps?

Yeah.

And I mean, little things.

Like, I'm thinking about 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've no one eats till no one eats 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.

Yeah.

So, could we maybe do an episode on that?

I love that idea.

Okay.

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

because 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, 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.

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 wife.

I know.

Abby just wrote back, no kicking fences.

Yeah, sister gets really intense.

I'm not, 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.

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 called the hinterland because it was basically like.

half a mile from it felt like it was like a half a mile from the baseball field up really high and behind this 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 felt like oh wait there's gonna be a there's gonna be an after of this you know 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,

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 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.

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 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.

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 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 receive 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 100 things that I have, that I'm lucky enough to have, you know.

Amen.

It's a 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 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 might not be legit.

Yep.

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, 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.

Yeah.

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.

So 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, but

okay, pod squad, we love you.

We'll see you here next time.

Bye.

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