Alicia’s DIEP Flap Reconstruction [Part 2 - After Surgery]

This is a story about what happens when you have breast cancer told in real time.

Hello, Alicia.

Hello.

So you look great and

Thank you.

It's been, okay so the last time we talked was right before Mother's Day, and we are here probably exactly five months later.

Yeah.

Right. It seems like a lifetime to you, I'm sure

It does, but it kind of went by really fast.

So just to refresh the audience on where we were, I'm sure that they listened to the episode leading up to this, but just give us a quick rundown of what was going on, what was going on right when we talked last time, I know that you were getting ready to go into for surgery, for a DIEP surgery.

Yes. So when we last spoke, we were talking about my upcoming DIEP flap surgery. The plan was to do both sides with my abdominal tissue and the appointment just prior to the surgery, it sounded like she was a little less confident she would be able to do both sides, but was still sounding like it was going to go okay. And that we'd be able to do both sides, if that makes any sense. So went into surgery that morning, nice and early, and kind of went from there, woke up and was half asleep. But I do remember her saying that she was only able to do one side. Then when I came to more, and she came to see me the next day, actually, I talked to my husband that night and he confirmed that she was only able to do one side, I guess when she had called him a couple times from the or this was my doctor called my husband a couple times just to say that it really wasn't going the way she had hoped. I guess there was a lot of scar tissue. So she basically was chiseling out the expander that I had in on the radiated side. She also was having a hard time finding my mammary vessel, which was the vessel they wanted to use in order to perfuse the flap that they were going to be putting in. The reason,

The blood vessel right?

Yeah. And I guess is because my mammary vessel was so big that she was thinking it for my lungs, and so she got her assistant in there and he was looking around too, and they finally decided, no, this is the mammary vessel. So apparently have large mammary vessels. I don't know.

Well, there you go.

I guess there could be worse problems to have. So she almost aborted though because of that situation. And then once she was chiseling out, my expander, she

Chiseling. Just doesn't sound really

No, not at all.

I get shivers hearing the word chiseling.

Yeah.

Okay. Go ahead.

So based on that, I can't remember if we had talked last time about how just prior the weeks leading up to my surgery, I was feeling like my lungs were rubbing against my ribs if I laid on my side. She basically confirmed that was the situation because the expander was so large and tight that it was pressing my ribs in. So add to that, basically what came forth was that the tissue that I had available to perform this DIEP flap in her opinion, would make me an A if she did my non-radiating side and maybe flat if I did the radiated side as well, if she did both sides basically. So she opted to just focus on repairing my radiated side. So use the tissue that I had, and here we are five months later. At this point, it is looking a little bit more like a breast, but in comparison to the side with the expander, I look like I had a single mastectomy and stayed flat because it's just that small.

So you still have the other expander in?

I still have the expander because I feel like before we had the procedure, the plan was to do both sides with the DIEP procedure. We briefly talked about if she wasn't able to do the expander side, the non radiated side, it sounded like she was going to switch it out for an implant, but I don't think we ever really confirmed that. So I think she decided not to do that. In addition, just doing the one side took about 10 hours, which was supposed to be the plan for both sides.

Right. 10 hours. And wow. It sounds to me like what she was trying to do too, is the area you were having so much pain because your rib was pushed up against your lung and the expander was pushing on it. And so for those people who don't remember why it was pushing so hard, when radiation happens, the skin is pulled so tightly, literally so tightly that it pushed the expander against stir cage, which pressed against your lungs. And that's because the radiation does such damage to the skin in that way. And so remind us about the radiated skin, because that was what she was really trying to, you had so much damage, she was really trying to fix that too.

So my situation is that my husband was like, why are they always talking about how small your boobs are? So I was already small chested prior to everything, and we did skin sparing mastectomy. But because the radiation just, I was hoping that by being good with moisturizing and all that stuff, that the elasticity would improve, but it didn't. So I think between the radiation and the damage that it causes to the skin and probably to the bones underneath, plus everything else that I'm on, that just makes everything worse anyways, I think just that expander under the weight of the saline that was in there, in addition to just being, the way Dr. Aria explained it was that the skin was like saran wrap. So if something was in there or not, it's just going to suck down tight on top of everything. And so I think between the weight of the expander that was there and the loss of elasticity, then that's what happened.

Horrible, perfect storm.

It was in for, and I asked her the recommendation was to do it at least six months after radiation. I waited over a year. I was like, if I would've done this sooner, would that have made any difference? And she didn't think so. So that was a little bit reassuring, I suppose. But

Sure.

I'm sure just that period of time didn't help the situation.

Right? Yeah. So she went in and she, do you feel like she got most of the scar tissue? She got it all enough to give you relief?

I mean, I think so. It's hard to say how things are healing now. I don't know if it's new scar tissue or what. The area itself, where the breast is, if we want to call it that, is a lot softer, but it's also new tissue because it came from my abdomen. So the tissue that was previously radiated that is still there is still very tight.

Right.

So it's hard to say. I mean, yeah, I think it's improved as far as the symptoms I'm having now versus when I have the expander, but it's still not pre-procedurre.

Not great.

Pre-radiation at all.

So you wake up and you find out that she's just done this one side, even though you were under all the painkillers and stuff like that, did you feel some relief immediately from the pain?

Yeah, actually what hurt the most was my arm. When I woke up my arm, I was having some cording issue that had extended into my elbow area, like the popliteal part of my arm or antecubital area where they, it's like the other side of your elbow, the inner part. But I was having a lot of pain there, and it was because I had been positioned a certain way for so long that it just,

Oh my God, imagine you're like this. Right? And she's probably got you strapped down. And so the muscles are probably like, ah, right.

Yeah. I think my arm might've been extended even, but it was probably overextended and for a long period of time. So I was like, I know that my chest just got worked on, but my arm hurts more than me.

Because it was positioned for 10 hours. Oh my gosh. I can't hold it up for three seconds with, okay, so I saw you and you looked great. I was like, she looks like she could go run a marathon. You looked fantastic. It was a day or two later and you had the good room, which was amazing. The good room at Green, it looks out at the water and Torrey Pines golf course.

It was beautiful.

How long were you in the hospital and all that?

So I went in on, it was on a Saturday and I was in the hospital until Thursday evening. There wasn't a whole lot of sleep because it was just hard to sleep in whatever position I was in. Plus they would come in and do certain things at certain times. So that was rough. So there was some watching of Criminal Minds, which was on my Paramount plus. <laugh>

Good, good.

Friends Marathon on at that time too, on Nick at night. So that worked out in my favor.

Perfect.

A lot of random, whatever else was on, I brought books with me. Really wasn't in a place to feel like reading at the time, so it was easier just to have something on. I think that's all I really remember doing. My husband would come hang out with me. My younger son went to fifth grade camp, so I didn't really see him during that time, but my older one was home, and so he came with my husband at one point. It went by fast, it feels like so long ago now.

I know it's another world, right?

Yeah. I tried to get up and walk around the unit a little bit each day. That was pretty much it. I guess on one hand it was kind of nice that we only did one side because that at least gave me my left arm. I was able to do stuff versus if I would've done both sides, I wouldn't have had my arms or my abdomen to use for getting up.

Right. Yeah. How was the abdomen pain? How was that? I remember you said that you were imagining it was like having your mastectomy and your C-section at the same time.

Yeah, I guess it was a little bit better than I was anticipating. I was good about taking my Toradol as scheduled, so I think that helped a lot. I really didn't take much else for pain.

Toradol is magic.

It really works well for surgical pain. So I took that. I think I had Tylenol schedule. That was really all I was taking, and I tried to plan my activities. So I learned a lot from having my C-section, but about planning activities around your pain medication. So you get your pain medication, you give it a little bit of time to kick in, and that's when you get up to go do your walk versus anything else.

Exactly. Because there's somebody there with you, so if you fall on the pain meds, you're good, right? I mean, that's a sizable amount of time. That's five days.

Yeah, I think the hardest part, and it might be TMI with the abdominal part was trying to make sure you didn't get constipated. And even though I wasn't taking narcotics or anything, just not moving around a lot really slows things down. And I had the urge to go and I couldn't drain, so I would sit there forever. I felt so bad for my nurse and my nurse assistant. They would help me to the bathroom and I was like, you're just going to have to give me time.

Why don't you guys to lunch and come back?

Yeah. I'm like, if you got something else to do, you might as well go, because I might be for a while not going. So that was a challenge. But

Yeah, that's a huge thing to know. Well, plus they kind of moved everything around there too. They literally opened you up from hip to hip and they moved everything around. And so that had to be kind of an adjustment to get all of that back in place. And operating. Normally when you're not operating normally because you're super active, you've got a lot of energy and you're usually moving around, you laying in a bed is not normal. How was it getting home?

Getting home wasn't too bad. Like I said, I remember after the mastectomy, again, planning pain medication around your activities. I do remember taking a narcotic to go home. I didn't know what it was going to be like this time around. I didn't feel the need to do that. And the ride home was fine. I just had to move slow, getting in and out of the car, that kind of stuff. We have a tall bed at home, which I thought was helpful when I had the C-section. So I was kind of hoping it'd be helpful as far as getting in and out of the bed. I didn't have to sit down low or anything. I didn't end up getting a recliner.

Okay, that's, alright.

But I had my wedge pillows, lots of pillows all around. Like I said, having the ability to at least use my left arm was helpful as far as getting up and being able to do stuff.

Sure.

And I guess because they didn't really do the lymph nodes this time around, I think there was a little bit less involved with the arm. It was just because my arm was so hot sore because of that positioning part that things were challenging.

I mean, things you don't think about. People think they don't think that your arms are strapped down or in an odd position or something when you're having surgery. Anyway, so when I saw you, you had shown me the difference in the coloring of the skin because they took skin from your abdomen in addition to the other tissue, and they took skin to repair what was so damaged up on top, and it was literally the best Tahiti tan line. It was dark. I mean, not really. You didn't really want it there. And then it was like baby white abdomen.

It doesn't see the light of day. Yeah.

Right. Yeah, exactly. And the reason for that was because the skin up there has been so damaged from radiation and it was like the leathery saran wrap, I mean for lack of a better term. And so in order for everything to heal and to be more comfortable up there and probably to be able to build a little tissue, they put that skin that hadn't been damaged up there. And so there was no problem with any of that, the grafting at all. The tissue took and it was all fine and all of that.

Yeah, it's been fine. The color is starting to look better. It's still very tacked down in an area above, I guess it's kind of below my collarbone, the upper ribs. It's very tacked down there. And so as far as future stuff, I don't really know what the plan is yet. I'm waiting to just see how it feels. The color has improved though. The only issue I had was literally two weeks ago I noticed. So when you do the procedure like this where they want to perfuse the area and they're restitching vessels and connecting things like that, they have to monitor that somehow. And so what they did was had a wire that was put in and it was connected to this machine. And so while I was in the hospital, they had to listen. They could hear what my blood flow was doing and making sure that it was perfusing as it was supposed to in addition to checking color and sensation, all that other stuff.

(15:45)
But so when she disconnected me from that device, really all she did at the time was just cut the wire. So part of it is still inside and the rest of it was gone. And she said that it was something we could deal with later. It wasn't anything that would be a problem. And so I've had this little tiny piece of wire sticking out from the incision for the last couple months and it has been fine, but I was going to say a couple weeks ago I noticed just around where that little piece of wire was, it was red and a little bit swollen just over that piece of wire. Nothing was different about it. There was no drainage. I hadn't done anything to it to my knowledge. So I took a picture and I sent a message and they were like, oh, we'll have you come in. It's not anything urgent. And by the time I went in, it had healed itself. So she ended up trying to pull the rest of the wire out, but it didn't want to let go. And so I still have wire in there somewhere, but she trimmed it down as much as she could.

Okay. T S A, what's happening? Do you have any metal?

Yeah, I don't know what, but I got something in there. But yeah, that's the only trouble I really had with it. It seemed to have grafted well, it's still discolored. It's still white in comparison to the surrounding area because I still have that radiated tissue that's just darker than everywhere else. And I actually saw my radiation oncologist a few, I guess maybe a month or two ago. And even she was still like, I don't know why it's still that color. I don't know why you healed that way. Apparently I'm an anomaly.

I remember Dr. Pacella saying the only constant with radiation is that it's inconsistent. like what happens with radiation. I remember being like, you guys are plastic surgeons. You can make anything work. You can fix anything. Come on, you're magic. And I understand now.

Yeah, I was probably a little bit naive with all of that. I was thinking, like I said, when they talk to you about radiation side effects, it's like a bad sunburn. And in my experience growing up, I'd never really had bad sunburns. My turned into a tan and it was never an issue. And so to have it be the way it was, it was really not what I expected.

No, and that's the thing is I want to continue about the DIEP, but I feel like through this process, when you're going through all the treatments, when you're still just like you're stepping through this whole process, everybody always says, oh, radiation's the easy part. If you went through chemo radiation's, a walk in the park, and I will say chemo was no picnic, but I would say radiation for me was much worse. And probably the effects from chemo are worse. And we have a mutual friend now, Annette, who you talked to, and she has, I don't think it's the same as yours as far as the damage, but she and I talked while she was having radiation about all of the things that were going on, and it's no picnic and a lot of the issue. Wouldn't you say the majority of the issue that you have right now is because of the radiation?

For sure.

And so it's not to scare anybody, but it's also to say, just beware. There's no, no one size fits all for your outcomes or anything like that. I always tan too, and I was shocked at the burns. Now I don't have the residual damage that you had. Give us a little bit of a recap of what the recovery was like through the whole process, and you have some changes that are exciting that are coming up because you went back to work and all of that. But if you can give us a little bit of a recap. How long were you unable to lift things? How long were you off work? What was it like returning to work? Just give us a little bit of recap.

So we had planned to be off for 12 weeks, and majority of that time she told me not to lift anything over five pounds. So I didn't, the first couple, maybe week or two at home, I can't remember how long exactly. I really tried not to do a lot. So I got my kids to help out with things, doing dishes, things like that. Tried to just focus on resting and would again, get up and try to walk around. We have outside my house, it's not really a cul-de-sac, but it's like a nice little quarter mile loop that I can do, but it's hilly. So I tried to do that a couple times a day, but it was a little challenging because going uphill or downhill, you definitely would feel it. So I tried to be good about resting. I watched my shows, which when I started going back to physical therapy, I think because I was turning my head one way more than the other, I ended up having to do a stretch for my neck because it was overstretched. Silly little problems.

That's funny.

So somebody had given me a, it's called Woobles and it's a learn to crochet kit. So I tried learning how to crochet. I looked into more ways to volunteer in different things. It was really hard to entertain myself while resting in bed,

I imagine.

So I did my best. It felt like a long time, but I think it was only two or three weeks, I can't remember. But then I would see in a DIEP flap group on Facebook, and there was another person who had hers around the same time as me, and she's posting videos of herself boxing and things like that. I was like, man, I must be a real wimp. I'm trying to be good not doing anything. And here this person's boxing. But then she posted a picture later on that she ended up having a complication with healing.

You think? So it looks like after about six weeks you were cleared to run, right?

Yes. So that was surprising. She told me I couldn't do anything that was real core heavy. So squats and things like that, but really you use your core for everything. So when she told me I could run, I thought that was interesting. So I did attempt run walk. That's been my thing lately, but I didn't really go back to my weight lifting classes or anything like that until she fully cleared me at 12 weeks, which was also when I went back to work.

(22:06)
It was fine to go back as far as how I felt physically. Even when I went back to work last year, one of the things that I was dealing with was feeling nauseous probably every day, and I wasn't sleeping well, so it was more of the same. When I went back this time, I came back to just some changes in the way things were day-to-day activities at work. So it was just getting used to that again, plus whatever changes had taken place just prior to me coming back. We had some big changes at that time, but otherwise it was easier to go back this time than it was after having been off for a year.

So that would've been like September, right?

I went back, it was August, so early August, I went back and then just actually finished my last day, September 29th with Scripps. I've been there for almost eight years and just

Wow.

got started at U C S D.

So let's talk about that role.

So I had seen this position a couple times while I was going through treatment. Didn't even know jobs like this were in existence at the time until going through it, and so it's a nurse case manager role, but it's for the breast oncologist that we have at U C S D and they have a whole breast comprehensive center. So the radiation is next door. They do their surgeries in the same building where they do imaging and chemotherapies and everything. So it's a

Wow.

really interesting setup. So this was my first week actually there in the unit because last week was more of just new employee orientation type stuff.

So is it like a nurse navigator? Is it working with the doctors? What does that look like?

I feel like it's kind of a little bit of both. They do have a nurse navigator on her own. That's all she does. And then this is a case manager role, so I'm assigned to a doctor and you just have patient contact triaging if they're having side effects with their treatment, answering whatever questions about the treatment or what their diagnosis and stuff. So it's just to support a certain doctor. So there's so many of them there that they all have their nurse. Yeah.

Well, and what's so valuable about that is that you've been through it and so you'd have something to speak to. It's so valuable because you totally get where they are. I'm so excited for you. Yeah, I'm going to miss you. I'm going next week.

Oh, you are?

Yeah. I just miss you.

Honestly, that was the saddest part, was leaving the people that I worked with and the patients that I got to know because as you're saying, being able to connect with the patients on a different level than most people can, it was really rewarding, and so it was hard to say goodbye to that.

Yeah.

But now I'll be focused in on breast cancer and hopefully can make new connections.

Yeah, totally. Well, okay, so now when do you see Dr. Aria again? You're probably, I don't want to even think about this.

So I was supposed to see her I think last week, but because I had had that red spot, I ended up getting in sooner, which was kind of nice because then I didn't have to go back for another visit. The last couple times I've seen her, it's kind of been, I have a couple different options. I guess we'll say. I could switch my expander out for just an implant, which we could have done while I was on my leave. A lot easier of a process, but I was like, I don't want to jump into any more surgeries if I don't have to right now. And I really don't know what I want to do as far as everything is concerned at this point, because I'm hoping as far as the side that we did do the DIEP on, because it's, like I said, it looks pretty flat still.

(25:56)
She could try to do some fat grafting, but because it's so tacked down in some areas, she's not sure how much it will actually help. You know what I mean? So I'm hoping that with just some time that can heal a little bit. I've been going to physical therapy. They've been doing something called cold laser therapy where it hopefully will break up the scar tissue in there and kind of loosen up the skin a little bit and maybe be able to support that. So until I know if that's really going to do much, I don't really want to touch the other side because I may want to do a flap on the other side, other sites that you can do flaps from. So I don't want to switch it out and then decide to do a flap and you know what I mean? I just really don't want to do anything more than I need to, and because that side wasn't as uncomfortable, it wasn't something we needed to do urgently. I'm kind of just waiting and seeing right now.

Sure.

And she was in support of that.

Okay. That's great. I mean, I have to say that I would've had some tantrums. I know I would've had some tantrums around this because it was supposed to be a one and done.

For sure. Yeah, I think my naivety kind of went into that as well, because you hear stories of people who have to have multiple surgeries because they're having one complication or the other, and I guess blissfully hoped that that wouldn't be me, and here we are, but I don't know what I want to do yet. As much as I want to get the expander out at this point, I just don't know what I want to do, and I don't honestly, and I've told people this, and maybe I'd feel differently later on, but if I would've known things were going to go the way they did, I probably would've stayed flat because I just didn't want to have to go through multiple procedures.

Right. Well, absolutely. Again, you always hope for the best, and you always see yourself coming out on that other end because there's a lot of scary stuff out there. You go to Dr. Google and in your career you hear of all of these things, but I feel like with the number of surgeries that happen and the number of complications that there are, the odds are that you're going to be fine and things are going to go the way that they need to go. So I have to say, I was crestfallen for you. I was so upset, and I didn't want to tell you that because I didn't want to upset you, and I had a really hard time with your surgery, personally. It wasn't about me, but it was about, I was thinking about all that you went through to get there and all the research you did, and all the time you waited. I was just like, oh my gosh, you're just smiling and happy and moving along. I would've totally had my Kristen tantrums, and I'm sure that it wasn't happy all the time. I'm sure that there were the feelings.

Yes. When she told me that she only did the one side, I definitely shed some tears.

Yeah.

Because, that was a lot to go through to do one side.

Yeah. 10 hours, and you are going through it like a trooper. So the plan is you guys are just going to hang and wait.

I think so.

And see what happens.

Yeah. Well, now the issue is because I left Scripps and went to U C S D, do I switch insurance and have access to different doctors now or do I go on my husband's insurance to keep things consistent? So that's been my big dilemma lately. Part of me,

That's a huge dilemma.

Oh, yeah. A big part of me was like, you know what? I want to keep things consistent, but there's a little part of me that's like, I don't know, maybe there's different, I don't know. I don't know what to do.

Maybe switching it up and getting another opinion and another set of eyes.

Even when I saw Dr. Aria the last time, I told her I might be switching insurance, and she said, oh, well, I know a couple of doctors over there who'd be able to work with you. So I mean, that's reassuring.

(30:12)
When I talked to Annette, that was one of the things that I told her was she came and saw me every day. She gave me her cell phone number if anything came up. She was very there for me. She listened to me in the procedure. She didn't use my abdominal muscles. She knew it wasn't something I wanted. I felt heard, which was good, but I don't know if she's super comfortable doing flaps from other sites either. So if that is something I want to pursue, maybe the change isn't a bad thing, and if she has recommendations for me, that's helpful. It's hard if you have just one doctor and you switch insurance, that's one thing, but to switch a whole team of doctors still in the middle of stuff, that's the challenge.

Yeah, because you're still getting Zometa infusions and all of that stuff too.

Yeah.

Well, we're going to have to stay connected here.

That sounds good.

I know that you helped a lot of people, just so you know with your bravery to talk about the DIEP flap and everything.

Thank you. That's good to know.

Yeah, absolutely. Anything else you want to chat about? Anything else you feel like people who are maybe considering this or have gone through it or are in the middle of it might need to know?

I guess kind of along the lines of the whole radiation thing. Everybody's different. I know that a DIEP flap can be successful for a lot of people, so I don't want people to take my story and think that's the way it's going to be. A lot of times people can do both sides. Even when I had one of my first follow-ups after surgery, she really said she hasn't had a whole lot of patients that have had my situation. So it is not as common, I guess, to have the complications that I have. So it can be a nice option for people to still do that.

Yeah, I really value that because people can listen to it and they can be in a fear mode and they can only hear, oh, this was a problem, and that is not what we ever want to do. We want to share what the experiences are and all of that too.

But I guess on the flip side, like I said, I was naive in thinking that things could be straightforward and easy, but it may not always be the case either.

Yeah, yeah, exactly. Okay, well, I love you and it's so good to see you, and I'm excited about of all your next stuff. I'll talk to you soon.

Sounds like a plan.

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