Day 420: Goodbye Franken-Boobs

Kristen (00:08): This is a story about what happens when you have breast cancer told in real-time. Eva, have you noticed I emulate your, your voice inflections? Told, in real-time.

Eva Sheie (00:19): They say mimicry is the highest form of flattery.

Kristen (00:22): Absolutely.

Eva Sheie (00:24): So, last time we talked you had been having terrible side effects right after your Zometa, which was an infusion to prevent osteoporosis or to harden your bones, right?

Kristen (00:36): Yep.

Eva Sheie (00:36): I have that, right?

Kristen (00:37): Yep. That's it. What I learned about Zometa is that it, basically a crude way of saying it, is that it takes the calcium from your blood and puts it in your bones. And it's supposed to help with the side effect of bone loss, bone density issues that come when you are not producing estrogen. So by taking these estrogen blockers, it basically ages you. I mean, if you think about what happens as people get older, but especially women, when you take estrogen from your body, you're weakening their bones and all of that. So this Zometa is an infusion that is supposed to help with bone density issues, as well as, this is a super huge bonus, it's supposed to help keep the breast cancer from metastasizing in the bones, which is one place that it really likes to go.

Kristen (01:30): And so it's supposed to help with that. So I had this Zometa infusion. It was about, I don't know, 30, 40 minute situation. And then I felt kind of okay the next day and then the following night, I felt like I had a horrible flu. And through all this cancer, aside from my surgeries, I haven't called in sick for work at all. I've gone in later, I'd gone in on shorter days. But I mean, I actually called in sick on that Friday because I just couldn't move. I was vomiting. I didn't feel well.

Eva Sheie (02:04): Were you Googling stuff like Zometa side effects, Zometa vomiting?

Kristen (02:10): Oh yeah. I think I probably took pictures of them and sent to you all the side effects and I said, "Oh, should we get a pool together to see which side effects Kristin will get from this?" Because there were pages and pages and it was like, most people don't have any of this. About 20% get this, about 5% get this. And it was like all these different things. So anytime I see a side effect, I'm just like, "Okay. I could have that. Even if 1% of the population gets it." I don't take it lightly anymore. What that really kicked off for me was some really horrible, I guess you could call it, acid reflux, but it was so much worse than any acid reflux I ever had. It reminded me of the burn that I felt in my esophagus when I had radiation and it was literally from my diaphragm up to my throat and I was nauseous all the time.

Kristen (03:02): I was dizzy. I was having headaches. And when I saw Dr. Ali, I told her about some nausea and she said, "Be sure and tell me if that persists." And so I was really happy that a lot of the bone pain had gone away because I took that break from Anastrozole for two weeks. So of course, my mind starts thinking, "Oh. So there's all these side effects that I couldn't even go back and read because there's books, I'm sure of it, on what radiation could do to your body." And specifically all that radiation I'm thinking, going from in my esophagus, right? Because all this stopped at the diaphragm, which is where they stopped the radiation and was up to my neck. And so I'm Googling esophageal cancer, I'm Googling adhesions, all of these different things. So I finally started taking some Prilosec and that was helping, but every time I laid down it just felt like acid was coming up into my throat.

Eva Sheie (04:10): Help me understand the timing just a little bit. You were on the break from the hormone blockers and then you did the Zometa while you were on the break.

Kristen (04:18): No. So I went back on the hormone blockers.

Eva Sheie (04:22): And then you did the infusion.

Kristen (04:23): Right.

Eva Sheie (04:24): So I remember there being a few days here where we were not sure what was causing it, if it was the Zometa or if it was going back on the hormones.

Kristen (04:33): Right. We weren't sure what was going on there.

Eva Sheie (04:35): Super confusing.

Kristen (04:36): Yeah. It was super confusing. And so when my digestive system started feeling even worse, I got really nervous about that. I'm thinking, "Oh crap. Maybe it's something they missed in my colon." Plus, the last time I'd had a scan, I mean, aside from like the MRI to look at my breasts, was over a year ago. And in that time I got the news that I had lymph node involvement. So of course your brain goes, "Oh, okay. Even though there was just that one lymph node, what else? Where else did it go? What happened?" So whenever you don't know for sure or whenever somebody says, "You're only cancer free until you're not," you're left to think about a lot of different things. And one of the frustrations that this summer was when Dr. Ali told me that I wasn't going to have scans because I said, "Oh, so do I have a scan? Do you check after radiation? Like when do you do that?"

Kristen (05:32): And she said, "Well we don't do that." She gave me like all of the statistics on how when they've done scans and when they haven't, there's no different survivability, there's no advantages, I guess. They didn't catch anything sooner, is what she was saying. And so sooner than when people said that they had these weird symptoms, I said, "So how would I know?" This is what I was asking her in July. "Like how would I know when to tell you about that versus like what's the side effect versus like what's regular living?" So she said, "Well if you have a cough that persists." And I'm thinking, "Oh cool. So if it persists, then basically it's become lung cancer. Okay, cool." "Or if your hip is bothering you." I'm like, "Oh, cool. So you're just going to wait until it gets into my bones. Awesome." That's what my brain is thinking.

Kristen (06:26): I hope this relays. It's very unnerving when you've been told, "Okay. You have cancer. You are starting chemo on this day. And this is your protocol and your life is planned for the next nine months. Here's this doctor's appointment, this doctor's appointment, and then you're going to radiation every single day." And then all of a sudden nothing. There's, "Okay. You're going on hormone blockers." "Okay. What else?" "Well, let us know if something bothers you."

Eva Sheie (06:56): If you feel really, really bad.

Kristen (06:59): Right.

Eva Sheie (07:00): Send us a note through the portal.

Kristen (07:03): Right. Send us a note... which is just what I did. I mean, they're the experts. They know what they're doing. It's just, I think when you have cancer, and I've never thought of fighting cancer because I never wanted to fight my body, but when I was on this journey and I was going through all of these things, because you were going to these appointments and you were feeling like there is something tangible happening, whether it's chemo in my blood destroying cells or whether it's the doctor's cutting out the cancer or whether it's radiation zapping those lymph nodes in the chest wall, you could feel like there was some activity happening. And then all of a sudden stops. And so you kind of feel like, "I don't have any control over this anymore. Like what's going to happen?" Not that I had any control before, but I wasn't able to take action anymore.

Kristen (07:58): And thank goodness because I don't know that my body could have taken anymore, but it was this weird phenomenon, but I did send a note in the portal. I was super upset because I was like not feeling well and I couldn't figure it out and I didn't know how unwell I was supposed to feel before I contacted somebody. And so I wrote a note to Dr. Ali's nurse and I have to say like in less than an hour, there was a CAT scan set up and an appointment for the following week. And two people had called me and got it all set up. So it was really no joke. It was really, "If you are feeling poorly, let us know. We will get it checked." So I went in on this past Wednesday. So March 2nd. I had my pre-up appointment with Dr. Patella in the morning and went back to the same facility a few hours later to get the CAT scan. And did the scan and was terrified.

Kristen (09:05): I was so emotional for several days before that. And it made me actually kind of thankful that there aren't scans every six months that you had to get ready for, right? So I think the scan was at like 1:30. By 2:30, Dr. Ali's nurse had called and said, "We got your CAT scan results. Dr. Ali has reviewed them. There's no evidence of any kind of metastatic anything. Everything's clear. It looks good." Within an hour of that scan. I hadn't even gotten home and put my purse down. Those two things, with them setting it up that quickly and taking it seriously, and then also having the experience to understand what their patients are going through and how nervous they are afterwards, that was such a huge gift. I mean, I thanked Dr. Ali profusely when I saw her Friday. And that was such great news.

Kristen (10:04): I didn't even know how to process it. Because I knew that my exchange surgery, which is happening tomorrow, that was coming up and I was thinking, "Okay. So I need to tell Dr. Pacella that the scan is happening because maybe it's going to change everything if something happens and do they want to open me up?" All these things are going through my head. So I can't tell you how relieved I was, but it really took a couple days for it to kick in for me to understand, "Oh. Okay. You're clear. There's nothing there." And all of the visualizations that I'd been doing about these dumb little cells traveling through my body and parking could be erased. I had to quit the fear talk. I want to share something that I did learn from Dr. Ali about the Zometa.

Eva Sheie (10:55): Oh yeah.

Kristen (10:57): So when I saw Dr. Ali on Friday, I kind of went in kind of feeling like embarrassed a little bit that like, "Wow. That really wasn't anything and did I overreact a little bit?" Just because, I mean, I don't know. There was nothing wrong, which I'm so glad there was nothing wrong and I'm so glad I got the scan. So when I was talking to her, she validated that when you finish treatment, you kind of don't know what to do with yourself. And you kind of feel like there's nothing you can do and so sometimes the side effects, they get to be really on the forefront of your mind. And I don't know how that goes away. When you're told when something's really bothering you, that it could be something serious. And in the groups that I'm in, people say, "Oh. It kind of fades."

Kristen (11:47): And all of that. And I can imagine that it does, but when I was talking to her, she said, "You're fine." And she said, "Some of the things, go ahead and follow-up with your primary care. But as far as your cancer doctor needing to see you, I don't need to see you again until August, unless something else really comes up." But she said what she has been seeing with the Zometa is that this first infusion, because a lot of people have just said that the first infusion is a tough one and then it gets better. But she said, "People have been having more reactions to the Zometa in the past six to 12 months." And so she said, "I don't know, but I need to look into that. I wonder if the vaccine is changing the way that your body is processing this."

Kristen (12:32): And she said, "It's completely possible." So she said, "We'll try this again in August and if you have the same response, then there's another infusion that we can try." But I thought it was really interesting that it also made me feel like, "Okay. Well maybe I'm not kind of a hypochondriac, that there is something that's going on." So anyway. She was very reassuring and at the same time, she was totally understandable, but you're fine. So I was telling you about this a little bit earlier. I put something on Facebook and it was a picture of the bottom of my test result and it says, "No acute findings or evidence of metastatic disease." And it's the bottom of a four page report. At the bottom underneath that it just says, "Final result." And then when I looked at that, I was like, "That's so powerful. How many people want to see that?"

Eva Sheie (13:28): Shouldn't that be the headline though? Sorry. Seriously? Like, why wasn't it the headline of the report?

Kristen (13:33): I know.

Eva Sheie (13:33): Why was it after [inaudible 00:13:34] last page?

Kristen (13:36): I know. At the very, very bottom of the last page, right? And so on the post, I just put, "Best words ever after a scan." And I was floored by how quickly and how many people were so supportive and so happy to see that I was okay and people that I had no idea were watching. And I put that up there not for attention, but more for like, "I hope you guys understand like how good this feels." And I think I was hoping that maybe some people would have some sympathy and maybe create a little empathy for people in their lives that may be going through that. And when they get a scan back, it's not just like, "Oh, great. Congratulations." And it was like, "No. Do you understand? Like I just got my life back." Or in my brain, I got my life back.

Eva Sheie (14:27): So you had your pre-op right before your scan.

Kristen (14:30): Yeah.

Eva Sheie (14:31): And it sounded like he was really busy. So how much time did he spend with you in that appointment?

Kristen (14:38): He and I were in there together for probably 15, 20 minutes. He came in and he took pictures, which I was like, "Okay. Now you can really see about the Franken boob we're talking about here." And then we talked a little bit about the implants and about like I thought there was going to be this whole array of breasts to choose from.

Eva Sheie (14:57): Like the candy store of breasts.

Kristen (14:59): Yeah. Like Jelly Bellies, but it was like the implants. Right? I never had a bucket list of getting implants. Like that was never something that was on my radar. Right? And so I had never really had a thought about, "What would I want them to look like if I could choose?" So with all the radiation and just the differences in my breasts and the changes that, I can't even say they're breasts right now, but the tissue is gone. Right? So it's just like basically a space with expanders in there right now. And so I just basically said to him, I said, "I don't need to be huge. I don't need to be little. I just need to be proportionate with my body. And I trust you to put in whatever it is that you think is going to work."

Kristen (15:49): And so I know he ordered a bunch of different ones, but I thought it was super interesting that he was saying that like the one that has been radiated because the skin is so much thinner, that it would probably be a bigger implant. And I had no idea how much thinner that skin is. So I was there for a good 45 minutes between the nurses and the meds and all of that. Yeah. So here we are, the night before surgery. I'm so excited.

Eva Sheie (16:16): So what have we been doing today?

Kristen (16:18): What I've been doing today is I was going to do dishes and I let my sink run and it ran all the way over and it flooded drawers and my kitchen. So today I've been taking everything out of my drawers and reorganizing them, which needed to be done in the sense that I moved my plates and bowls down to below shoulder level so that I can reach them because that's one of the things that, for three weeks, I can't lift my arms over my shoulders while I recover from surgery. They call it an exchange surgery. It's where they take the expanders out and they replace them with implants. And I've had these expanders in since June 22nd. So it'll be 33 weeks by the time I get them out, which means I could have had a baby in that time.

Eva Sheie (17:10): A slightly premature baby.

Kristen (17:12): Slightly, but could have happened. Today I was busy cleaning that up for a while. And my cousin came in from Seattle and we went out and had a really nice lunch down at Jake's on the water in Delmar. And I think we figured out that we hadn't seen each other since like she was six and I was 10, but through the magic of Facebook, we reconnected and she has been listening to the podcast and she said she's listened to each one at least twice. And she said, "It's been really great to get to know you and see the similarities that we have when we didn't even grow up together." I don't know if anybody remembers back, we were talking about a robe that my cousin sent me from Anna Ono and it has these little pockets, these little things for drains in it and the material is just so soft.

Kristen (18:07): So she sent me that and I used it daily. In fact, so much so that I ordered another one and I love it. Lived in it. It's super comfortable to use even when you're not right out of surgery. But because she had a friend who'd gone through breast cancer and having a double mastectomy, she knew a little bit about what the recovery was like and she said, "If you ever need anybody to come down, if you need any help, if you want a break, just let me know. I'll be there." So I picked her up from the airport and she's taking me to surgery tomorrow morning. It's an outpatient surgery tomorrow. It's about a two and a half hour surgery. Then she'll bring me home and babysit and give me all my meds and she'll be here until Thursday.

Kristen (18:53): So I'm not staying in the hospital tomorrow and I'm kind of a nerd about having some new incisions and such a serious surgery and coming home and not having sterilized everything around me like a hospital does. So I have all of my linens laid out so in the morning when I get up, change the linens, have clean linens. I mean, like my wedge pillow is washed, like the cover is washed. Everything's ready to go and I don't know why, if that's important at all to anybody but me, but it's just I didn't think about that stuff in the previous surgery because I was going to be in the hospital and I would have the nurses taking care of all that stuff.

Eva Sheie (19:35): I have a feeling you're going to feel great after this.

Kristen (19:38): Oh, I'm sure. Dr. Pacella said it's going to be a fraction of the pain. And the expanders are so rigid and they're so hard that just getting them out, it's going to help my back. I think that they're pushing on a nerve that's between the chest wall. And I know my range of motion isn't great right now. I work on it a lot. I had a massage yesterday and she really worked on my shoulders and my upper back and my neck because of just the weight of the expanders.

Eva Sheie (20:16): So what time are you leaving the house in the morning?

Kristen (20:19): Seven.

Eva Sheie (20:19): And so you'll be home by when?

Kristen (20:22): I'm guessing one.

Eva Sheie (20:24): Wow.

Kristen (20:25): I'm giving it more time. Like one is very liberal, actually. I could be home earlier than that, but I had a rough time last time in recovery with the pain meds they gave me. It just took a while for them to get me stabilized just because my blood pressure was low. So again, it's an ambulatory center. I walk in. That's what they call it. And so it's about maybe 20 minutes from here, but I'm allowing 45 because of traffic. So I need to be there at 7:45 for an 8:45 surgery. And then it says that it's over at 10:45.

Eva Sheie (21:02): Yeah. A couple hours in recovery and then you're out of here lady.

Kristen (21:06): Yeah. I'm out of here.

Eva Sheie (21:07): Go home.

Kristen (21:07): Go home. Get out. Go home.

Eva Sheie (21:11): Does he have you taking anything tonight to get in front of the nausea or the-

Kristen (21:15): I have a patch.

Eva Sheie (21:17): Oh, okay.

Kristen (21:18): He wants me to put it on an hour before in the morning. Yeah. I have some nausea medication. I have antibiotics. I have my special wash. So yeah. It's here and it's weird and I think after having the scan, I'm able to celebrate. This feels like it's almost closing the door on this last 14 months, 15 months. And we still do have another surgery. Dr. Pacella and I do have another surgery after everything settles to do some fat transfer stuff. I haven't decided really about nipples and how I want to do that. If I want to do that, that's a whole nother conversation he and I will have. And I think a lot of it depends on just the radiated side and-

Eva Sheie (22:02): Yeah.

Kristen (22:02): I'm really relieved to get the expanders out because I've been dealing with probably anywhere from a two to four pain level since I've had them in.

Eva Sheie (22:11): It was more like six this week, seven.

Kristen (22:15): This week it was-

Eva Sheie (22:16): [inaudible 00:22:16].

Kristen (22:16): Yeah. This week it was almost up to eight I'm sure.

Eva Sheie (22:19): For sure, because you want those out.

Kristen (22:22): I want them out. I was finding all these like, "Oh. That hurts so much. I just can't handle it for another day."

Eva Sheie (22:29): Oh, how I suffer, when I think how I suffer.

Kristen (22:32): Exactly. So I got to take pictures of the Franken boobs tonight just so I have them. Yeah. So I'm going to have nicely wrapped packages less than 24 hours from right now. So it's funny, when I sleep now, so I've always been a side sleeper, but I can actually get rid of a pillow now because when I sleep, I don't even know how to describe this. When I sleep, I sleep on my left side and the expander, the big Franken boob, is so heavy that I put a pillow-

Eva Sheie (23:09): In the middle.

Kristen (23:09): Between it, in the middle so that it has something to lean on. It has its own pillow.

Eva Sheie (23:16): That's really sad.

Kristen (23:18): It's the only way I can sleep on my side where it doesn't pull and hurt.

Eva Sheie (23:22): Oh my goodness. Well, I'll be glad to see that thing gone.

Kristen (23:27): I know. Me too. Me too. It does feel like I'm laughing more this weekend.

Eva Sheie (23:33): Yeah.

Kristen (23:34): And I feel like a weight has been lifted and tomorrow I'm going to feel like a lot of weight has been lifted.

Eva Sheie (23:41): Okay. So the next time we talk, it'll be Tuesday morning.

Kristen (23:45): So excited.

Eva Sheie (23:46): I know.

Kristen (23:47): Very different sentiment than when I was going last time. I was-

Eva Sheie (23:50): Yeah.

Kristen (23:51): Very different. Okay. Well I love you.

Eva Sheie (23:55): I love you too.

Eva Sheie (24:01): Thanks for listening to Breast Cancer Stories. There's a link in the show notes with all of the resources mentioned on this episode and more info about how you can donate. If you're facing a breast cancer diagnosis and you want to tell your story on the podcast, send an email to hello@theaxis.io. I'm Eva Sheie, your host and executive producer. Production support for the show comes from Mary Ellen Clarkson and our engineer is Daniel Croeser. Breast Cancer Stories is a production of The Axis, theaxis.io.