Day 403: What They Don’t Tell You About Hormone Blockers

Eva (00:08): When we started this podcast over a year ago, we didn't know what it would turn into. Since then, one of the things we've consistently heard from you, our audience, is that Kristen's story is helping women going through the same thing, but also their friends and family are able to listen and hear what's happening to the person they love.

Kristen (00:26): Your feedback is so important to us as we plan the future of this podcast, so please keep it coming. There are some things we're asking for your help with today. I'm so excited. We're kicking off a newsletter to share the key takeaways from each episode, links to any resources we talk about, and if we have promo codes or giveaways for anyone we're partnering with. This is where you'll hear about it first.

Eva (00:49): If you've been listening to us for a while, you know we are cynical Gen-X'ers who approach everything with a healthy dose of skepticism. So, you can also expect that from us in this newsletter.

Kristen (00:59): You'll get some additional notes and thoughts from me related to each episode and the most useful, truly helpful resources for dealing with all the breast cancel, cancer things.

Eva (01:11): If you have chemo tongue, you'll just be able to...

Kristen (01:19): Oh my God. All right. You'll get some key additional... Fuck. You'll get some additional notes and thoughts from me related to each episode and the most useful, truly helpful resources for dealing with all the breast cancer... Just thought about my chemo tongue. That was really funny.

Kristen (01:46): You'll get some additional notes and thoughts from me related to each episode and the most useful resources for dealing with all the breast cancer things. So if you have chemo brain, you'll be able to just go read your email and find anything we talked about on the podcast without having to remember it. So helpful.

Eva (02:06): I'm not sure you're going to be able to write an email. We'll help you. We'll help you. It'll be fine.

Eva (02:12): So, just click the button that says you're going to subscribe and we got you.

Kristen (02:19): Exactly.

Eva (02:22): We'll include promo codes and special offers for anyone we're partnering with. For example, if you've heard Kristen talk about her Kyte Baby pajamas that I got for her during chemo we're about to give away a free pair of those super soft bamboo pajamas.

Kristen (02:38): I'm actually wearing them right now. Those were the only pajamas I could wear during chemo that I didn't sweat through. I literally changed my clothes three times a night because I was sweating before I got these.

Eva (02:50): When you subscribe to the newsletter today, we'll automatically enter you in the drawing to win the Kyte Baby pajamas in whatever color and size you want. So the first way you can show us your love is to subscribe on the newsletter page at breastcancerstoriespodcast.com. And the link is in the show notes for you, too, of course. And we promise not to annoy you with too many emails.

Eva (03:13): This is a story about breast cancer told in real time. It's day 403. So, good morning. Thank you for getting up early. Just to mark the timeline for everyone who's listening, can you just give me a few points on where we are?

Kristen (03:32): Sure. Good morning. So we have finished chemo. It's really weird to think I finished chemo eight months ago, double mastectomy was done, radiation, started hormone blockers, and I am two and a half weeks away from my exchange surgery, which means that they take out my expanders and put in implants. I'm excited to get the expanders out, because they're so rigid.

Eva (04:00): So how are you sleeping?

Kristen (04:04): I've learned to go to bed earlier. I have been waking up about the past two and a half weeks at 4:00 or 4:30, 5:00, and girl, I can sleep, sleep. We've talked about that, about the fatigue that comes from these hormone blockers. I saw Dr. Ali on day 365, which I think was very cool. And we talked about the effects of hormone blockers and I had been having really, really horrible effects to where I was considering switching, but it was kind of like the devil I knew because I've heard that a lot of women had much worse cognitive issues, much worse emotional issues. And so I do get emotional, but it's not keeping me from completely functioning in my life, whereas the bone pain and the fatigue were killing me. And so her suggestion was to do a two week stop, like a pause, and then restart them because sometimes that resets your body. And so I did that and since I've been taking them, I haven't been sleeping as well.

Eva (05:23): Go back for a second though. When you stopped taking the blockers and did the reset, did you feel better immediately?

Kristen (05:32): It took about a week.

Eva (05:33): It took a week for your hormones to kind of come back up?

Kristen (05:36): Yeah. And the thing is, I don't think I have much estrogen in my body because I'm in menopause, but it's been explained to me that we store estrogen in our brain and also in our fat. And so there is some in there and then whatever we ingest also. So there wasn't a flood of estrogen coming back as if I was premenopausal or something, right? It was a gradual thing. It was very weird because it kind of went vertically down in my body. It went from, all of a sudden my hips felt better, down to my knees, and to my ankles. And my big toenails are both black from the Taxol, I believe, it could be the AC, I don't remember now. And they haven't fallen off yet. So those hurt in a different way obviously than the back of my heels and my Achilles tendon. So those things always hurt. And I do stretches constantly. It gets better throughout the day with movement. It's kind of like plantar fasciitis.

Eva (06:44): But you can't take anything for the pain?

Kristen (06:46): I mean, I take ibuprofen or Advil, but I have to be really careful with my liver and my kidneys. So I do take it, but I only take one or two when it's really bad. So those things went away except for my feet, fatigue was minimized. I mean I could still always sleep, but it got much better.

Eva (07:09): How does the issue with your feet manifest in your everyday life? What's happening because of the feet?

Kristen (07:16): So I have an extra large heating pad that's by my bed. As soon as my alarm goes off, I turn on the heating pad and I sit up and I put my feet on it for quite a while. And then when I take a shower, I plug the drain and I put Epsom salts in there and my feet are then soaked in warm goodness and they're loosening up.

Kristen (07:42): There was a friend of mine who saw me get up from the couch a week or so ago, who hadn't seen me since October, and was like, "Oh my gosh, Kristen." Because I walk like a 70 year old woman if I've been sitting for more than 10 to 15 minutes. My feet get stiff again and it hurts, but it's always about a two pain level.

Eva (08:04): Yeah. But still, feet is different than any other part of your body because you have to be able to move. So listen, right across from our neighborhood, there's a place now called Foot Spa and I've been driving by it since they opened and saying to myself, and to Woodrow, "Can't be a real thing. How do they stay in business just doing feet?"

Kristen (08:30): Oh, it's a thing.

Eva (08:31): But it also looks like a place of ill repute.

Kristen (08:34): Oh.

Eva (08:35): So one day one of our mutual friends went there and posted it on Facebook. And I said, "Uh, that's a... That's a real... I thought that was one of those places." "No! They're amazing." I'm like, "Okay."

Kristen (09:00): That's awesome.

Eva (09:02): It looked like a rub and tug. I'm sorry. I'm like, "I can't believe there's one of those in our neighborhood. This place is going downhill." But it turns out they really do just work on feet.

Kristen (09:15): Oh my God.

Eva (09:19): Does anybody work on your feet or are you just taking care of it yourself?

Kristen (09:23): Yes. I go to physical therapy and the exercises are the most beneficial. I only see her for about a half an hour and she does some ultrasound and some massage and it helps for half a day. And then it kind of goes back. I was supposed to see a podiatrist about three weeks ago and he got COVID and I'm in the process of remaking that appointment.

Eva (09:46): I'm having a hard time following how having breast cancer turned into chronic foot pain.

Kristen (09:53): I think it's much more common than you realize.

Eva (09:57): Yeah?

Kristen (09:58): Again, what number are we at with the effects of chemo that they didn't tell you about? 927? Something like that? Well, and there's a friend of mine who had breast cancer and we had been communicating on Facebook and she said that for the entire five years that she was on Anastrozole, she wore these OOFOS, that's the only shoes that she could wear, and she had AC and Taxol. So I think it's much, much more common than anybody talks about.

Kristen (10:31): Again, we talked about, breast cancer is so common and people just kind of brush it off, I think. Not brush it off, but they're just kind of like, "Okay, well, you know, everybody knows what to do for it now because it's so common." And I just think it goes back a little bit to, what, 50 years ago, when people didn't talk about cancer. But people will talk about the cancer, but I don't think they talk about just how shitty it makes you feel. And I don't want to be that person who's complaining all the time. I don't want this to be about that. I just want it to be a reality check for people. So they don't feel like, "Oh my gosh, why is it just me? Just me? Just me?"

Eva (11:11): I've been really startled by what a mess it made in such a short amount of time. I agree with you. I don't think people know that it's not just the cancer's gone and I went back to normal and now I have implants and I look the same. This is kind of forever.

Kristen (11:32): I am pretty shocked about it, too. I will say that the people who I have come in contact with who have had an earlier stage than what I have, as a reminder, I had 3B and had all the goodies and all the treatments, but people who have had earlier stage and have not had chemotherapy and are not on hormone blockers, don't seem to have this. So if you had an early stage that was not hormone positive, it could seem like these are things that they have no idea about. So I think the more treatments you have, the more things you're doing to combat the cancer itself and the recurrence of cancer, the more of these things come up.

Eva (12:25): Along with foot pain, how have you been feeling emotionally? I know when I'm in pain, it makes me sad. So what's been going on?

Kristen (12:37): I'm better this week. Last week and the week before, there was a little bit of a buildup to an event getting a Zometa infusion and I'll come back to what that is and why that is, in just a second. I had gone back on the hormone blockers, which I know do cause some emotional side effects. And I do take some medication for that. I make sure that I take it every day now.

Kristen (13:05): I'll explain the Zometa really quickly. So the Zometa is something that they give to people who are taking hormone blockers, AI's, that's what they call them, aromatase inhibitors. And they do that because of bone density issues. I had a bone density scan back in August before I did radiation. And it was found that I have something called osteopenia in my hips and in my back. I consider that like pre-osteoporosis, there's some degeneration. I think that probably comes with being almost 57 years old, too. And having some back injuries and being active and skiing and whatever you do in your life.

Kristen (13:49): So the concern with that though, is that with the hormone blockers, that my bones are going to be degenerating because they're taking all the estrogen out of my body. Basically what's happening with the estrogen blockers is that my body is prematurely aging because there's no estrogen in my body. Estrogen is what a lot of people are doing right now. They're doing hormone placement therapy, bioidentical to keep from aging and to keep feeling better, to keep movement and all of that. So I'm having that blocked in order to keep my cancer recurrence at a low probability. So could I go off the hormone blocker? Sure. That seems like it might solve a lot of problems.

Eva (14:37): Well, yeah. And you've been going down rabbit holes on social media about this. What have you seen people saying about hormone blockers?

Kristen (14:47): So people go off them because they're like, "If I'm going to get cancer again, I want to have a quality of life during that two years, or three years or whatever." And-

Eva (14:59): Like they're just making a trade off?

Kristen (15:00): Yeah.

Eva (15:01): Or a bet?

Kristen (15:02): Yeah.

Eva (15:03): Yeah.

Kristen (15:04): And with my estrogen number of 79 of a 100, I just feel like it's super irresponsible of me. I'm not ready to throw in the towel and think maybe at 60 I'm done. You know me. I got to fight. And I think there have to be some ways I can combat this, and I know exercise is super helpful, but it's not the complete answer.

Eva (15:30): How do you exercise when you feel like crap all the time?

Kristen (15:33): That's the catch-22 is to just try to do a little bit. And that's why I got those shoes, right?

Eva (15:40): Right.

Kristen (15:41): My $260 shoes with special insoles molded to my feet and all of that. And I put them on and I was so excited that my feet were going to feel better and they're super cute, but I didn't buy them for cuteness. I bought them for functionality. I was in the store where the guy watched my gate, it was a very prescriptive pair of shoes. And I put them on and my feet hurt worse. And I was like, "Oh." And part of it, I'm going to go half to 75%, were that my feet were in shoes and my toes were hitting the top of my shoe, my big toes that are bruised, because I hadn't been wearing closed toe shoes before. And my nails were trimmed. You know, it wasn't like I had these long old daggers that were hitting the end of the shoes or anything like that. It was just that the shoe was touching my toe. And so, I mean, I wore them religiously all the time, all around the house, at work, for a week and it got better.

Eva (16:49): It just didn't get better?

Kristen (16:51): Well, it did get better. I just got used to it.

Eva (16:53): Oh, okay.

Kristen (16:55): So when I put my shoes on today, I'm going to be like, "Oh I need to take these back."

Eva (17:00): What are they?

Kristen (17:01): Brooks.

Eva (17:02): Oh, they're just athletic shoes. But they're...

Kristen (17:06): Yeah. They took the insoles that I have, they heat them up and they mold them to your foot and it's the most supportive inserts that I can get. So yeah. Super cute. They're like navy blue with a little pink thing on the bottom. And that was just a side note to what I've been trying to do to remedy the foot stuff.

Kristen (17:23): But as far as the Zometa, I'll go back to that. The Zometa is an infusion that takes about 20 to 45 minutes. Now my oncologist, she said, "Oh, it's a shot you get every six months." And then when the infusion center called me, I was like, "Mmm, it's an infusion, huh? So it's not just a shot." And I put it off for so long. They called me and wanted me to come in the next week. And I was like, "Yeah, I really can't do that."

Kristen (17:54): And I was researching the hell out of it and asking all kinds of people, what was going on, what they had found from it. And everybody finds something different. Everybody's just different with their bodies, of course, as is everything with cancer. So then they scheduled another appointment and I was like, "Oh, you know, I'm off the hormone blocker. So let's do that afterwards because I really want to see what happens with being off the hormone blockers." And then they scheduled another one. I was like, "Oh, I'm having a physical that week. I really don't want it to impede."

Kristen (18:22): So, I put it off as long as I could. And I really did know in my gut that I needed to get that done. What that does, I found out, is it takes the calcium from your blood and puts it in your bones. And so, I need to take a calcium supplement. So what I was really struggling with was, "Okay, I'm getting this infusion that has some side effects and I'm taking a calcium supplement because of this infusion. I'm doing this infusion to combat side effects of a medication I'm taking in hopes that my cancer doesn't recur after I don't have cancer anymore." That's a long little string of events or you know, it's like six degrees of separation, kind of. Right?

Eva (19:16): I can see why people say, "I don't want to do any of this," and just take their chances because it's a lot.

Kristen (19:22): It's a lot of work and if I were not in the life stage, if I were not in the job, if I were not in the mindset that I'm in now, if I were in my thirties or forties and had kids at home and/or had a job where I was expected, even teaching, there's no way I could teach and do this because I watch Sammy, he's a little over two. So he's not testing my intellect a lot. Here and there.

Eva (19:58): You're on the right level. Chemo brain and a two year old.

Kristen (20:03): Right? Exactly. Well, I've started playing Wordle, which I've been okay with my brain now. I'm like, "Okay, it's getting smarter." So I have a very unique situation to where I don't have long, 12 hour days. I have eight to 10 hour days. I also have a two hour break where if I need to rest, I mean, I do rest and there is never any judgment. I hope that people get that by now on here. It's just, I'm sharing my experience and what I feel like I need to do. And everybody's journey is completely different. And cancer doesn't discriminate at all. People who have stage two show up with it in their spine a year and a half later. You just don't know. Can I mention something about breast cancer cells? That's kind of a side note.

Eva (20:56): Yes, please.

Kristen (20:57): So I didn't realize that breast cancer can go into your spine, that it can go into your brain, that it can go into your liver, colon. It can go anywhere that you have cells. Bones. One of the great side effects of Zometa is it keeps breast cancer from metastasizing in your cells. I'm sorry. In your bones. So I always thought if someone had cancer in their liver, it was liver cancer. Metastasize is stage four, right? Metastasize means that the cancer moved to another part of your body, the breast cancer cells moved to another part of your body. So you can have brain cancer from brain cancer cells and you can have cancer that's breast cancer cells that have moved through your body. That's why the lymph system is such an issue. And the lymph nodes are so scary.

Eva (21:57): Is that how they travel?

Kristen (21:59): They travel through your bloodstream, they travel through your lymph system. And the thing that convinced me to have chemo was that it was going to potentially kill micro cells that were in the rest of my body because she said, if it comes back it's stage four, it's moved somewhere else.

Kristen (22:16): So to put it in just really simple terms, I had a double mastectomy. There's no breast tissue left. Right? So if breast cancer comes back, it comes back somewhere else, chest wall, lungs, spine, brain, liver. Those are the common places that people with breast cancer see it metastasized. So I didn't realize that. I just thought that when you had cancer cells, wherever the cancer cells showed up, it was that kind of cancer. I think it's really important for people to understand that because people have said, "Well, your chances of recurrence are really low because you don't have boobs anymore." And I'm like, "No. Breast cancer, [crosstalk 00:23:05]." No, I didn't know that though, until I had cancer and did research. But I think it's important for people to understand, why I feel like I need to take the hormone blockers and what are the consequences if it comes back. It doesn't just come back like around an implant. There's no breast tissue left.

Eva (23:28): You know, our previous episode was called Another Day In The Valley. And I think this one could easily be called Another Day In The Valley of Hell, because this is a valley. And I hope that we're on our way out of this valley. I say, we. I really... I hope you're... I hope this valley is not very long for you and that you can start coming out of it and climbing out of it.

Kristen (23:56): Thank you. Well, I have realized that this is kind of Kristen 3.0. I call 2.0 when I dealt with my trauma and my bad habits and moved out here. And then I think it's, I hate to use the word, the new normal, because it's been overused in COVID, but maybe I go to sleep much earlier, maybe I don't expect as much of me anymore, and I have to change what my perception of before looked like, the perception that I'm going to be the same person, because you can't be, you can't be. It's like before you're a parent and after you're a parent. You see the world completely differently. It really is very similar to that, in just a very different way and it's work to not be in the valley and to laugh and to not stay in that place.

Kristen (24:57): So one of the things that really had me... Oh my gosh, as I'm talking about this, my legs are shaking, moving back and forth out of angst. When I went, I had a follow-up appointment with my radiation oncologist and that took place in the same building where my radiation was. And the following day I had the Zometa infusion that was in the same place where I had my chemo therapy. It was in the infusion center and it took everything I had to show up at both of those appointments.

Kristen (25:37): And I didn't think I had any trauma because of any of those things. I was like, "Yeah, they're done. Check, check." And I was like, "Okay, just go back in there. You're not getting radiation." And I didn't have to go through the gown room where everybody who was getting radiation had been sitting. I went in through a different entrance and the appointment was good.

Kristen (25:59): And then going into the infusion center that morning, I literally was like, "Okay, so they're going to access my port and blah, blah, blah." And I was like, "Oh wait. You Don't have a port." I was thinking about the things I had done when I went to the infusion center before. And I clearly hadn't gotten over the chemo because when I went in there, I was talking to the nurse, I was like, "Oh my gosh, this is the first time I've been back here since chemo." And she's like, "Oh yeah, this is so much easier than that. Da, da, da, da." And I was still looking around. And even just the sound of the pump, of the medication going in, it was triggering. Or I don't really want to say triggering, but I had to work myself out of it. So that was some of the emotion that had been going on prior.

Kristen (26:48): And then I got sick from the Zometa. I stayed really hydrated. Everybody said, "If you stay hydrated, it'll be a breeze." And I was drinking gallons of water. I actually called in sick to work. I didn't do that even through chemo. The only time I was off for full days was the three weeks after my surgery. I mean, there were days I went in late and didn't work full days, but I was actually really sick and that bummed me out. I was like, "Man, is this how my life's going to be? No, this isn't. This is just what you're going through so that it gets better. Everybody talks about it gets better after a while."

Kristen (27:26): So with the sleep thing that we talked about earlier, I think that might be from the Zometa. I'm not sure. But right now I feel 75% better than I did on the hormone blockers before. I don't have as much pain. And that could be because of the Zometa infusion, following me going back on them. Within four days though, my ankles did start hurting again. It just hasn't moved all the way up yet.

Eva (27:56): I know a good foot spa. It's right over-

Kristen (28:08): So yeah. That's where we are. So I'm going to have to make the valleys just kind of like coming down from a speed bump.

Eva (28:18): Well, I want to ask you about one of the positives that's recently come out of doing the podcast, which is some of the people that have been reaching out to us.

Kristen (28:27): Sure. Yeah. It's interesting because I had someone, she stalked me and she found me on Facebook and she sent me a message and she had been recently diagnosed with cancer, didn't know really completely what they were looking at. And she contacted me and she said, "I binged your podcast. It's helped me so much. I'm newly diagnosed. I just want to be sure you're okay." Like, did something happen. And so she had heard up to probably when radiation was happening. And so I wrote back to her and I'm keeping up with her and her journey.

Kristen (29:01): And I also have received notes from people who listen on different platforms saying that they're going through the same thing. And that, I guess my Pollyanna's paying off. Just being able to see things in a different way has helped people to not feel alone. And that being really honest and not just peppy and like, "Yeah, it's all fine. It's good. I don't feel bad." You know? And, "How's your cancer? How's your cancer?" Has helped people to be okay with the way that they're feeling.

Kristen (29:37): I found out that nurses are listening to us, Eva. How cool is that? Because I don't feel like I have any kind of information like they do. I think that maybe they're seeing it from the other side? What do you think?

Eva (29:51): I was super honored to hear that.

Kristen (29:54): Yeah.

Eva (29:55): Anyone in medicine, because one of our goals is to help people and they're on the front lines, helping people every day. And so I think hearing that and understanding that it's being shared from people like that is really powerful. That's the reason we're doing this.

Kristen (30:14): So honored that people are finding what we started out to chronicle my journey. We had a conversation the day before I was starting chemo and just decided to pull out the mics and the Zoom and see what we could do. And the fact that people are finding it really useful and a companion... if there's anything, I want people to feel like they're not alone because the support that you've given me through this whole thing, Eva, as a friend is invaluable. You haven't gone through it. So you can't say, "I know. When I did..." and identify. And you have as close to empathy as you can have. Right? But somebody who's been through it is going to have a different sort of empathy, I think.

Eva (31:06): I like to think I'm just here to make inappropriate jokes to break up the seriousness by using my defense mechanisms, which are drop one-liners when it starts to feel uncomfortable.

Kristen (31:24): No, but I mean, as a friend you've been there for me and, but for the podcast, you're asking the questions a lot of people want to have answered. And I'm not really sure that I could have articulated the things that I have been able to say without you asking those insightful questions.

Eva (31:46): I try to put myself in the shoes of someone, of a friend or a family member, who wants to know what's really happening with the person they love and not everybody has the kind of relationships where they can ask those questions. And we're just lucky that we were able to do that. I think there was something magical there.

Kristen (32:04): Absolutely. I think there are a lot more people than we realize that go through this alone.

Eva (32:09): A lot.

Kristen (32:10): A lot. Every day in these groups that I'm in, 5 to 10 people are saying, "Say prayers for me, I'm having surgery. I'm having this. I'm having chemo. I'm having..." So it's like this whole underground society that there's more members of than anybody ever, ever, ever, ever realizes. So I found that a lot of people who are newly diagnosed are finding this as a companion or as something to give them a little bit of a roadmap. I answer every Instagram note. I answer every Facebook note. And so I hope people feel comfortable and vulnerable enough to reach out because I wish I had that kind of resource.

Eva (32:57): So we're going to talk again right before your implant exchange surgery happens.

Kristen (33:02): Yes. So before we talk again, I get to go in and pick out my boobies, which I think is going to be interesting. I just have to look at it as the next part of the adventure.

Eva (33:15): I'm pretty excited for you to unwrap that badly wrapped package.

Kristen (33:20): Both of the badly wrapped packages. Oh my gosh.

Eva (33:25): 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.