Episode 15: Where Do We Go From Here

In this episode, I share details of the moments, days, and weeks after my breast cancer diagnosis.

Transcript

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Speaker 1 0:09

[inaudible] everybody welcome back to the power hour.

Speaker 2 0:11

So if you haven't already listened to episode 14, I recommend that you pause here and do that now because , um, that's really going to help you understand better the context of this episode , um, where I share some information about my recent diagnosis of breast cancer, couple items though, before we jump into that. So housekeeping items, the first is that, you know, I'm really, I'm excited to sh I guess excited might be strong . This isn't not exactly a topic I was ever intending to speak about, but now that it's happening to me , um, I feel like it's really important story to share. And so, as I said, in that last episode, I'm going to try to just share some information in real time about what's happening with me and how I'm doing. But that also means that I don't really know when I'm going to be recording. And I don't know when these are going to be coming out. I was on a schedule of trying to release something every two weeks on a Wednesday. And right now I'm just kind of doing things as I feel like I can, as I have the mental and physical energy. And , um, as it just sort of feels like it's the right time. So they were going to come out sporadically and , uh, I'm just kind of going to do the best I can with that. And also I'm definitely going for quality over I'm sorry. Cool . Well, quality versus technical quality content quality over technical quality. I am not always going to be able to sit down at my recording Mike, to do all this. And so I hope that the quality of the recording will be sufficient, but I hope you will also be kind to me as it may not be as top-notch as I would generally. Like the other thing I want to add is I understand that I was wrong about my age. I said in the last episode that I was 48 and I'm actually happy to report. I'm only 47. I've gained a whole year of my life back and it's not the first time I've actually gotten my age wrong. I don't know what that says, but a couple people pointed it out to me and I'm happy to report. I'm only 47. So there are there, I got that go on for me. So , um, with that, I thought I would just kind of jumped in with where we left off on episode 14, where I had just received my diagnosis of cancer, which was grade one invasive ductal carcinoma. So we received the call from the doctor on Monday a Monday evening and , um, very, very kind of jump like minutes jumped into, you know, who do we need to call? What do we need to do? We learned from this , the radiologist who called us at our, our next step was going to be to contact a surgeon. And so after, you know, kind of taking a moment to be like, what the is happening, Jonathan immediately call? I think his first call was to a friend of ours. Who's a primary care physician who obviously unfortunately makes this referral a referral quite often for her patients. So that was our first call. And she gave us the name of a surgeon that she recommends. And actually that ended up being the name that came up several times , um , in several conversations with people who are sort of medically , uh , in the medical field. And I'm very, very fortunate and privileged that I happened to come from a family of healthcare providers. Um, and so I I'm very privileged in that way. My husband, in addition to being a healthcare provider , um, I have my, my mother and my sister both worked in healthcare, different roles, one administrator, one , um, actual provider. Um, so, so we're very fortunate and we were lucky to have people who we could just call. Um, I've actually given a lot of thought over this time as to, you know, what do people do who don't really know what to do. And you know, I'm going to dedicate some time to that in the future episodes, but for now just kind of telling you about what we went through and we immediately made some calls. Jonathan immediately reached out to my family. I just wasn't really, I was still kind of in shock and not really able to really just didn't really, really want to talk about it. I was still processing it. Um, and so he was kind of on the phone making those calls, but then literally within the half hour, I mean, you have to understand that this call comes in and then immediately your life, as you kind of knew it is not the same. We were literally before the call making dinner, Jason has just texted us like I'm starving where's dinner. And, you know, he was waiting to hear when we were going to eat and then this call came in and I was like a mess and Jason was waiting for dinner. And I looked at Jonathan and I was like, what are we , what are we going to do? I'm like, and I knew I had to pull myself together. And I literally said that, like, I have to pull my stuff together. And I said, what do we do? And he's Jonathan said, well, we, we tell him. And I'm so thankful that he was just so very clear on that because of course, like that's what we had to do. There was going to be no way to hide what was, you know, my, my emotions. And , um, it then became very clear to me quickly that, you know, the information, although we had just received it and was devastating. It also, you know, we both are our medic, I guess, well , Jonathan's certainly educated, medically educated. And I guess, like I'd had enough information to know that, like, this is, this is treatable, right? And so there was no reason to believe that while it was not going to suck of course, to go through that I was going to be fine, but if you really, really needed my kids, I do need my kids to believe that. And so I, I really felt strongly that in order for them to believe that and to trust me, then I had to be upfront with them and be honest with them because if I lied to them, then I couldn't expect them to believe me when I say I'm going to be fine. So I felt that that was just the right thing to do. And also my kids aren't babies, right. They're 16 and they're 18. And so while this is devastating news to get, I really felt like it was the right thing to do. So literally Jason comes up for dinner and in a matter of minutes, you know, his world kind of turns upside down and we told him, and , um, you know, he was shocked, but we explained that, yes, this is going to sock , but you know, I'm going to be fine. And so he was really, really brave and he handled it really like a trooper and , um, you know, it was appropriate , you know, his emotions were all well , all right. As you would expect, we did try to sit down for dinner because he was hungry, you know, a half hour earlier. And I was like, let's just sit down and to eat. And of course, you know, nobody could really eat, but we did that. And then we went on to tell Abby later in that evening , um, which was also very hard to do, especially having her being away at school. And so that was super hard, but I just, you know, want to say how proud I am of them and how they are handling this. And, you know, the last few weeks have been very challenging, but I'll tell you something, you know, I think in the past, before I was diagnosed, I think I thought, you know, well, if I ever got that diagnosis, like, I don't know how I'd get out of bed in the morning. I don't know how I do this. And you know, it becomes quite clear that you just do and you just do what you have to do. And there are moments over the course of the last few weeks where, you know, I didn't, I, I, I was laughing, you know, I would, I would laugh with my family and I was out exercising and I was out grocery shopping and yes, I have moments where I break down and I just cry and I feel scared, but I also just kind of feel like there are nights where just sitting up watching TV and everything feels pretty normal. And if somebody had told me that that was possible, I would have said, you're crazy, but I think you just do what you have to do. And so we've definitely had a whole range of emotions and I definitely have my highs and lows. Um, I definitely , um, you know, I'm , I'm tired, but I actually think that's not just all of a sudden from cancer. I think that's just a stress and the fluctuation of my emotions is exhausting. So I'm pretty tired. Um , certainly by the end of the day , um, you know, people often reach out to me after you seven, eight o'clock with a phone call or a text message. And I just tell you, I have no bandwidth at that point to respond to anything. So my apologies to anybody who doesn't hear back from me, but , um, you know, I'm just kind of doing the best I can and I'm not, you know, obviously I'm, I'm talking about this. Um, but it's also tiring to do, and I can only do it so much in a day. So by the end of the night, I'm like, yeah, kind of just all talked out and just need to zone out with a book or a movie or a TV show. So that's just kinda what I'm doing. Um, but in terms of my diagnosis and what we did next, I was able to meet with a surgeon in , um, I don't know, I guess maybe it was a week later and we met with the surgeon, Jonathan came with me to the treatment and , um , we talked about the options and she immediately said , you know , we didn't know her. She didn't know me. And I think that's a tricky situation for a doctor to be in because clearly you have some options, but, you know, they don't really know you well enough to know what to really recommend. So they , they kind of come in with what I think they think is the least used invasive least , uh, consequential options. And so she started talking about, you know, having a lumpectomy with some radiation and that, with that, you know, I could, you know, it could be treated with just that with a very favorable outcome. And then I started asking, well, why would I not maybe just had a mastectomy? We know my chances because I had this point done a little bit of research enough to know that like, once you have cancer, like the chances of getting it again have increased, right? There's no guarantee you will or well, but they've only increased. And so I kind of wanted to know why I wouldn't have a mastectomy and she's like, well, that's definitely an option, but if you have a single, why wouldn't you just do the double? And I was like, yeah. I mean, that's my question. I think I very quickly went to, I just want to get rid of my boobs. I just really don't want to worry about this any more. Um, as I explained on the episode prior, they had missed their, the, the tumor on an , on our ultrasound before. And so it, wasn't having a lot of confidence in the screening. And so she did say that if I had the lumpectomy with radiation, I'd be screened every four to six weeks, I would be getting called backs because what I also learned during this meeting with the surgeon was that the radiologists in looking at my images were like, wow, you know, we don't really end up having to follow her because she's got really dense breast tissue and this is going to, they're hard to read. And once she said that my decision was just sealed. I knew I was not going, I could not live with having scans or imaging done every four to six months getting call back. Cause they're not really sure. And that just seemed like a lousy light , a lousy way to live. And for me at this point, I'm feeling like, just take them. I mean, I'm feeling at this point, like my have not served me really well. You know, I tried to breastfeed both my kids. I lasted for about a month with each, before getting horrible infections and mastitis, which was very painful. Um, and now this right now, cancer, so I'm not feeling particularly attached to my boobs right now. And the fortunate part is, you know, while they are part of the female body, like they're cosmetic, right. Other than maybe breastfeeding your kids, if you choose to do that , um, they're cosmetic. And so I was feeling like very clear that, that for me, wasn't easy decision to make that I didn't want to live with worry. I mean, listen , I'm still gonna have worry. Right. Cause we don't know if it's spread to the lymph nodes that there's, you know, I think once you get cancer, you're, I would think your chances of having other cancers might increase. And so I'm trying very hard not to focus on that. And I think for many people, it doesn't lead to that, but I just felt clear, like I wanted to eliminate any more risk. Um, I understand that whether you don't lumpectomy or mastectomy does not change your, your prognosis. So it's basically the same, but I think it just is , uh, definitely depends on your mental state. And I definitely think it does increase your chances of having recurrence in the breast . So for me, and I don't know if that's actually all accurate , but for me, that's just how I was feeling. Like it was just very clear that I was wanting to have a double mastectomy. Now I understand some people think that's overreacting . My surgeon didn't think so. She thought that was a very reasonable response. And so that was the decision I made very quickly, pretty quickly. Um, and then, so the next decision was going to be reconstruction or no reconstruction. And I then booked an appointment with the , um, plastic surgeon must be it's going to be a week and a half later, which felt actually very frustrating for me because I really now just want, wanted to have this surgery as quickly as possible. But now I needed to wait to meet with a plastic surgeon because that surgery is gonna obviously depend on, you know, if you need to do reconstruction, like that's going to change the actual mastectomy surgery or , or potentially could. So I had to wait for that. And in those coming days, leading up to that appointment, I'm doing some research. I'm not doing a ton of research cause honestly like statistics were making me a little crazy and I didn't really want to read too much about anything, but because I didn't want to create, you know, unnecessary fear and anxiety, but I wanted to have enough information that I would feel comfortable in making the right decision for myself. And I came to learn that they basically had three choices. I could do nothing I could just go flat. And that is something that more and more women are doing. And that was really, really reassuring to hear. I could do reconstruction with implants, which is an option and I could have reconstruction with, you know, they take , um, you know, tissue from other parts of your body and reconstruct your breasts, which some people view as a tummy tuck and a boob job, all the wives , which for a lot of women is very appealing for me. I, the thought of having additional procedures, which potentially you would likely need with reconstruction, increased risk of , um , infection or complications. I don't think they're significantly high, but certainly there's a risk of them. And especially given COVID all of that was very scary to me is very scary to me. And even the thought of putting implants in my body and foreign substance for cosmetic purposes. Like at this point I have this poison in my body that I'm desperate ticket out and the thought of putting more substance in my body that, you know, there's no guarantee you what will happen with that. There've been recalls with implants. And I just was feeling really anxious by all that and was pretty clear, or it was becoming more clear that I just decided I wanted to go flat, that I would go without having any boobs. And the plastic surgeon reassured me that if I ever changed my mind down the road, I could always come back and have reconstruction. So, you know , that was definitely reassuring to hear. Um, but I was feeling pretty comfortable in my decision. And the other thing is you can always get like broads with padding in it. Right? So I was feeling like for me, simplifying everything, simplifying everything is my primary goal right now. I want to have an easy recovery as possible. And I think that is consistent with just having a simple mastectomy. They call it simple, but nothing feels simple. And I don't know, you know, that's what I'm having. Cause I know they're removing some lymph nodes, so I'm not really sure what the formal medical title is . It , but just the mastectomy without the reconstruction is a shorter surgery at an easier recovery. And I think for me just feels very right. And um , it listen, you know, I'm very fortunate. I'm married to a fabulous husband who doesn't care what I look like , um, or sorry . So he says right now, but I believe , um, and um, you know, I, I just think for me, that's the right decision. So today's Monday what today is Monday, October 12th, I'm going in for surgery, the 14th for the double mastectomy, no reconstruction. And , um, I'm super nervous. I feel very confident in my decisions, but I obviously recognize that I don't truly know how I'm gonna feel until it happens. I had the opportunity to speak to a couple of women who have been through it. And , um, you know, I get varying responses about the recovery. Some say, it's not that bad. Um, I'm starting to think of the anticipation of the surgery might be worse than the actual surgery. Um, I did send my surgeon a note this morning. Like I just want to be clear about what I want , um , because I have heard some stories from women who, you know, went in to have a mastectomy and wanted to just flat with no extra skin, but some surgeons like leave a little extra scan in case you change your mind about recon reconstruction. And I really, you know, I'm really pretty confident in my decision. And so I really want to make sure that doesn't happen. Um, so I did send her a note, which was probably my anxiety talking, but I'm sure she's used to that. So I'm just kind of hanging in here, you know, I'm, I'm tired, it's exhausting, the mental jungle gym that your brain does. Um, but I'm doing okay. And , um, I, you know, I, I'm trying really not to get ahead of myself and my thinking about what comes next. Um, it's unclear whether or not I'll need chemotherapy yet. It will depend on the lymph nodes that they take during surgery. It will depend on some genetic testing that I'm going to get, that I don't even know what I'm supposed to get. I'm actually meeting with the oncologist for the first time tomorrow virtually I don't think that meeting was supposed to happen until after surgery, but I really pushed to have it earlier because I just want to establish that connection with her before the surgery. Um, it does seem odd to me that that conversation isn't happening earlier because maybe for me, it doesn't matter cause I'm having a double mastectomy, but if you weren't going to have a double mastectomy and you were just going to have the lymph node removal and yet then you did genetic testing that came back with some gene abnormalities that predispose you to certain kinds of cancer . You might then make a different decision and do the double mastectomy. So I think for my purposes, it doesn't really matter. I've already made that decision, but if you hadn't and then you had the gene testing, you might've made a different decision. I guess I'm unclear why we wouldn't sit down with an oncologist ahead of time, but I assume people know what these people know what they're doing, but it is a question I have. So if I get the answer to that, I'll share it down the road, but I am meeting with her just to sort of make that connection tomorrow. And then I'm sure we'll have further conversations with her down the road once we get some of the results back. Um, but I'm hanging in there. I'm doing okay. My family is doing okay. And I'm super proud of everybody. It's not lost on me that, you know, I can kind of clear my calendar and sit back and focus on this. But you know, Jonathan , can't, he's got to get up and go to work every day right now, which I know is really, really hard for him. And so that's, that's stressful for both of us. Um, he is taking obviously time off of work for my surgery and to be with me to recover in the weekend week after. So that's going to be good to have him with me and around for, for the kids. So that's good. Um, and I have lots of , and lots of family and friends who are here to help. Um, I've gotten lots of messages and encouragement. Um, I will say just a quick note before I, I sign off that, you know, if you're unclear what to say to somebody in these situations based on what I've gotten from people, you know what I will say my advice is , um, it's better to say something than nothing, but also sometimes matter better to say less than more. I get some responses where people seem freaked out by it and that freaks me out. And so I would say, you know, just kind of keep it simple. You know, it's just nice to know that people are thinking of you. And I have to say also the messages that use the word, we is really, really powerful. The messages that say we're with you, we're here for you. We're, we're, we're in this with you really go a long way. I think you don't really , um, understand the power of the we , um, until something like this happens and you hear that from somebody and it really, really does make a difference. So , um, that's been really, really nice to hear and to get, and , um, I really, really have appreciated all those words of , of support. So , um, thank you again, as always for listening and I hope to be able to get back to in the next week or so with how the surgery went. I imagine it won't be a very long episode, but I will try to update you towing on maybe doing something a little live right before the surgery, but I might not have the bandwidth and mental capacity to do that, but if I do I well and um, again, just appreciate all the support and um, hope everyone is hanging in there and doing it .

Speaker 1 22:20

Okay . [inaudible] .