Day 301: Another Day in the Valley

Eva Sheie (00:08): Hey, it's Eva, I'm the co-host of Breast Cancer Stories and this is day 301. For a lot of women, especially those prone to depression, there's a phenomenon that occurs after something big happens in their life, an event like a wedding, a funeral, giving birth, anything like that. So Kristen's finished with chemo, she's had a double mastectomy and she's finished with radiation but now she's really in the valley and nobody knows how deep or wide that valley is going to be.

Eva Sheie (00:40): The hormone blockers make things extra confusing. Is she really sad or is it just the hormones? Or is it a perfect storm of more new and unexpected decline? Neither of us know, but we'll keep telling this story as long as there is a story to tell. This is a story about what happens when you have breast cancer, told in real time.

Eva Sheie (01:07): We decided to bust out the microphones today because you're a couple days away from your appointment with your plastic surgeon, Dr. Pacella. That seemed like a good time. And also because there's a lot of things converging on how you're feeling right now. So it seems like a good time for a check in.

Kristen (01:25): Yep. I agree. End of the month, it'll be two months since we finished radiation.

Eva Sheie (01:31): Are your burns all healed? Is everything all back to normal there?

Kristen (01:35): Yeah.

Eva Sheie (01:36): Doesn't look like a hot holy mess anymore.

Kristen (01:38): No, but it's a little bit darker. It's interesting, if you're in person, it looks like a shadow, but you can see exactly where the line of radiation was because it's darker. It's still creepy interesting that in the back of my collar bone, it's still a little bit darker. The skin was never really burned, it was just darker. And it has to do with the radiation going through the skin. Because if you think about that part of your skin compared to your trunk, your collarbone, it's thinner up there.

Eva Sheie (02:16): Is it all going to fade? And eventually you won't have any dark skin or?

Kristen (02:21): I think so. I think it completely depends on your skin, I really hope so. I go to a physical therapist to keep a lymphedema situation, which I don't have, but we're trying to be sure I don't get it. And so she's been working on the cords. There's these cords, I guess, that happen when you have breast surgery and some lymph nodes are taken out. So I had 11 lymph nodes removed from the area underneath my arm and the right side of my right breast. And as a reminder, there was only one of those that were cancerous. The other 10 were not, which is awesome.

Eva Sheie (03:02): Do you happen to know how many lymph nodes we just have automatically like-

Kristen (03:06): A gazillion.

Eva Sheie (03:07): Oh, millions, like tons of them.

Kristen (03:09): Tons, tons. They're all over the place. There are still quite a few left in my chest.

Eva Sheie (03:16): According to Dr. Google, we have 600 lymph nodes.

Kristen (03:19): Not a gazillion.

Eva Sheie (03:20): No, just 600.

Kristen (03:22): Okay. So I'm left with 589. Which still seems adequate to me, I had no idea. This physical therapist I've been seeing we've been working on these cords. I picture linguine. The one that's really hard to get, the last one is between, I guess, the chest wall and the expander. And it sticks out a little bit so we work on it. When I go to see her every week, I think I've maybe seen her 10 or 11 times.

Kristen (03:53): So she saw me through my radiation. And I didn't go see her for about a month because I didn't want anybody touching my skin when it was so raw. And so when I saw her today, I mean, I'm just like, I just whip my shirt off all the time. Just like here, you want to see it? It's like, hey, here's my ankle. Here's my expanders. She said, "Wow, your skin looks incredible." I was like, "Really?" And she said, "Yeah, a lot of times it's orange peely after radiation." And I think it had to do with how much Dr. Pacella had expanded this one, because the skin is so tight on it. It's probably lifted up an inch higher than the other one that doesn't have the same amount in it. The cord that we're talking about is right under here.

Eva Sheie (04:47): I can see it.

Kristen (04:48): Yep. And so it hurts. It's filled with whatever needs to drain in your lymph system.

Eva Sheie (04:54): But it can't drain because there's no lymph node.

Kristen (04:56): I think that's it. I don't know. It's interesting because she's got them to drain. It feels like this warmth and there's all these different things like there's cupping and stuff that you can do, not on this area, but on your legs and other areas in your body to keep your lymph system moving. She explained it to me at the very beginning. It can be just different build up in your system of things that go through your lymph system normally. And there's not lymph nodes in that area right now. I think there's a buildup of different things that maybe your lymph system helps to filter out of your body.

Eva Sheie (05:37): So you got that going on.

Kristen (05:39): Yeah. I got that going on. I was telling her this morning that it feels like the weight of my chest feels like I have one of those baby bjorns on it when Brian was a newborn. I can't wear a bra that has a racer back because my shoulders start hurting because there's so much fluid. I think I did the math there's between a quart and a half gallon of fluid. So whatever that weighs, there's 860cc's in one and then 500 in the other.

Eva Sheie (06:12): That's a lot.

Kristen (06:13): It is a lot. Going back to why there's so much in there it has to do with Dr. Pacella's experience with expanders and radiation, because he really wanted to get this one expanded. And I think that my skin is the better for it because the physical therapist was, she kept saying, "Wow, your skin just looks really good. It's in really good shape." And I don't think it's my genetics and all the lotions I've been putting on it. I think it has to do with the way the expander has stretched the skin. And Dr. Pacella has a lot of experience with this obviously. And he came very highly recommended.

Eva Sheie (06:57): Oh, you're seeing Dr. Pacella this week. What are you seeing him for this week?

Kristen (07:02): I'm seeing him to kind of check up after radiation and then also to have the left breast filled somewhere. Because I think it's time to start getting the pocket stretched for when they do the exchange in March. I'm starting to wear a pad in the left one so that they don't look so off because it's probably a good couple cup sizes difference.

Eva Sheie (07:27): Definitely.

Kristen (07:28): I don't know if Dr. Pacella will be letting any of the fluid out of the right one or not. I think that my skin is probably still healing from radiation. So if I hadn't had radiation, this would be a pre op appointment for getting the expanders out and the implants in. But because of having radiation, we have to wait till six months after radiation is finished in order to do the exchange.

Eva Sheie (07:57): So there's two other things going on that I want to make sure that we ask you about today. One is hormone blockers. And first, can you tell me why they put you on hormone blockers to begin with and then-

Kristen (08:11): Sure.

Eva Sheie (08:12): ...cover how they're making you feel or not feel. And if you're able to tell any difference from being on those.

Kristen (08:20): Okay. The type of cancer I have is estrogen positive. So there's three main receptors in breast cancer and it's estrogen, progesterone and something called HER2. My progesterone was neutral and the HER2 is negative and the estrogen is positive. And on a scale from 1-100 it's 79. I picture a Pac-Man, that the receptor is like a Pac-Man. And when there's estrogen, it fills up on it. And then it becomes a cancer cell. I know, my brain. When I was told that it was estrogen positive, my oncologist and my surgeon were like, "Yay, that's great, it's treatable." Because the cancer feeds on estrogen, my little Pac-Man is looking for estrogen, right?

Kristen (09:12): Because of that, they want to block the estrogen from my body so there isn't any estrogen for cancer to feed on. And I've already gone through menopause. So I'm not producing a lot of estrogen in that way. So if we're talking about estrogen, real quickly and I'll get back to answering that question, my mom had ovarian cancer and my doctors wanted to keep me on birth control pills as long as possible. So I was on birth control pills, till I was almost 50, which had estrogen in them. And then I also was on an estradiol patch after I hit menopause for four years, which had estrogen.

Eva Sheie (09:53): For estrogen.

Kristen (09:55): And of course both of those things, everything says risk of breast cancer, but all I could think of is ovarian cancer, ovarian cancer, get rid of these hot flashes from menopause. And of course the estrogen was causing cancer, but which we didn't know.

Eva Sheie (10:13): Have you ever thought about all these risk factors sort of as a, not just one, but... What were all the risk factors you had that all converged into this one thing? Like-

Kristen (10:26): Yeah, so there's that, right? There's that piece. So what I found out is that breast cancer cells take anywhere from two to four years to replicate and to form enough cells to form a mass that is actually visible on an MRI. So if you go back two to four years from when my breast cancer was diagnosed, my stress level was really high and I was also drinking a lot. And so stress, increased alcohol, bad eating habits, which I was engaging in, and smoking. Those are those four things-

Eva Sheie (11:08): Smoking?

Kristen (11:09): ...I don't smoke, but that was the only thing of the big four risk factors that wasn't happening-

Eva Sheie (11:16): Right.

Kristen (11:16): ...two to four or five years ago, right. You can add just the frosting of estrogen in my past onto those things. And it was a perfect storm. Well, fortunately, or unfortunately it's all uncovered when I got healthy. I am convinced that the sugar and the alcohol and the poor eating habits that I was engaged in during 2017, 18, 19 contributed to this. And there's also genetics, but I had genetic testing done and they did it for 85 different types of cancers. And I tested positive for zero as far as the genetics go. That's all super relative.

Kristen (11:59): Everybody's cancer is different. And everybody gets it in different ways. And to go back to the estrogen blockers, it's something that's been on the table since day one when I met with Dr. Ali. And I'm on anastrozole, which is, I believe it's a generic for something called Arimidex. And that's something that they put women on in general after they've hit menopause. I was really really nervous about taking these because everything I've read about them and all of the groups that I'm on, people talk about going off of them because of the horrendous side effects. And I'm supposed to be on them for five to 10 years. I take them at night before I go to sleep.

Kristen (12:46): And I really only noticed some increased bone pain. And that's in addition to some of the neuropathy that is still hanging out from the Taxol chemo that I had. I hadn't really noticed a lot of side effects with the exception of nausea, because I would take it at night. And then I forgot to take it for two nights in a row, when I was house sitting. And yesterday I came to work and it was very weird. I was hot, I thought I was going to throw up, then I was cold, then I was dizzy. And I was like, "What is different?" And so I went and took just a half of the pill and then I took my anti-nausea medicine and had some toast and I felt better. It's weird because it's the reaction I would think I would have, if I had more hormones right in my body to have those weird side effects from not taking them.

Kristen (13:47): Last night and today I felt super emotional. And I don't know if it has to do with getting back on track with the hormones or what's going on. But as far as other side effects, I'm super fatigued, I can sleep anytime. I could just lay down and sleep at any point in time, I slept 14 hours.

Eva Sheie (14:10): Oh my God.

Kristen (14:10): Friday night to Saturday and I could have kept going. And so I just have to be sure... Okay, you gotta get up. Is this because you don't want to get up and your body hurts, or do you need more sleep? It's very weird because I feel like my body has aged a minimum 10 to 15 years in just this year. And I think part of the emotions behind it were that you have eating habits and you have exercise habits and just personal habits, like not smoking, right? Where you try to keep your body in good shape and you try to not age or the feeling of aging within your bones and your body and the structure of your body. And I have just felt like I've aged so much. And that a lot of it was an exercise in futility.

Eva Sheie (15:01): You told me that you were falling down a bunch.

Kristen (15:05): Yeah.

Eva Sheie (15:06): How's that happening?

Kristen (15:08): I believe it's the neuropathy of my feet, I'm tripping over my feet. One time I tripped when I didn't have shoes on, and I did a huge face plant. It was with my meditation group. And I don't know what happened, but I did this huge face plant. And it's weird because I don't remember getting up. It was the fastest getting up I could possibly, usually like now when I'm on the floor with Sammy and I'm playing and stuff, it's like, oh, creaking, to get up.

Eva Sheie (15:36): I know.

Kristen (15:39): It's just, you're right. It's like, you're creaking when you get up. But this, I popped right up, but I had bruises on my legs and my stomach, because I hit something with my stomach. And then about a week and a half ago I was walking up my stairs and I tripped over my feet and landed on my knee. The other knee from the side that had been bruised. And there's probably like a quarter sized scab that's finishing up-

Eva Sheie (16:08): Ouch.

Kristen (16:08): ...but it hit right on my knee cap. And it was so swollen and it still hurts. So my heels, like when I get up in the morning, I walk really slowly. You'd think I'm probably 70-years-old or 80-years-old because I walk really slowly because my heels and my achilles tendons hurt so badly from the neuropathy. And so I know we talked about a long, long time ago some of the challenges with Taxol. And one of them was not being able to button your clothes and then also tripping over your feet. And I laughed at that point in time and said, "Oh, that's not an option at 56." Well, it's weird because I was thinking it was just during the Taxol that that was going to be happening. And it's the effects of chemo now.

Eva Sheie (17:02): Oh, I know what this is. It's the thing number 923 that nobody told you.

Kristen (17:08): Shit they don't tell you about chemo! Right?

Eva Sheie (17:13): The series.

Kristen (17:14): I guess they did tell me, right?

Eva Sheie (17:16): They just didn't say when.

Kristen (17:18): They didn't say when. No, they didn't say when. I was thinking it was just during the Taxol and my feet really got much worse after radiation. And I don't believe that radiation has anything to do with that. Now the other thing I'm realizing is that my right side is about two to three pounds heavier on my chest than the other side. So I'm out of balance because I have this big ole expander on one side and a small one on the other. So my body is unbalanced.

Eva Sheie (17:51): Carry your purse on the other shoulder.

Kristen (17:56): I carry my dog on the other shoulder when I carry him.

Eva Sheie (17:59): Get a wrist weight and attach it to your other side.

Kristen (18:04): Silly girl.

Eva Sheie (18:05): Do Something.

Kristen (18:06): Right.

Eva Sheie (18:06): I know I'm just trying to be-

Kristen (18:08): No, I know you are. It's just very weird. It's just-

Eva Sheie (18:11): Coming with solutions here, man.

Kristen (18:12): I know. And I'm open to them all, but it's things like that. Because I'm not used to being medically fragile. And not that I'm any kind of an athlete, but I've always been active. I've never felt this unbalanced for this long.

Eva Sheie (18:30): Do you think that you were expecting things to get better now that you're done and maybe not decline more?

Kristen (18:38): Yes. Are you kidding? Yeah, of course. So I go through and I do all these things I'm supposed to do. And it's over with just like an ACL replacement. You do PT and you're back to normal, right? You do all the work they tell you to do, and then everything's fine. And that's the fallacy here that everything's fine and I know that it's a common feeling with people with breast cancer and possibly cancer in general. I haven't talked to a lot of people about their journeys recently aside from the breast cancer stuff. But I know that I feel like, and other people feel this way too, that it's this whirlwind of all this stuff getting done and everybody thinks, okay you're cancer free, you're done with chemo, your hair's coming back, you're fine. And now I'm just actually catching my breath from going through all of this and realizing what the new normal is.

Kristen (19:34): And coming out of COVID I feel like I got here two months before COVID to my favorite city, right? This beautiful city. And I still haven't gone and explored a lot of it because I got here a couple months before COVID hit. And I've had my vaccine and all of that. And my immune system is better, but I'm still in a high risk group. So if I were to get COVID, it could really affect me. Eva I'm just not used to being that person who is medically fragile. And what it feels like in my body is that it feels like my body was filled with cement. And it's not even so much the weight, it's just the way that your body feels when you move. And I could weigh 110 pounds and it would still have that feeling.

Kristen (20:22): And I've heard other people say that too. And it has to do with the fatigue and with all the different crap that was in my body. And since January, there's only been a four week period where there hasn't been something in my body that's not supposed to be there. Well, my expanders are still here, but after surgery. So chemo ended in June, beginning of June. My surgery was June 22nd and radiation actually started August 10th. So you think about how long it took chemo to get out of my body. And then there's the surgery meds and all of that. And I remember it was really something in my head about starting radiation that after radiation, I have to take these hormone blockers for five to 10 years. And so it's going to be a long time before there's not something in my body that's changing the way it's supposed to work on a pretty drastic scale. It's not just like a multivitamin.

Eva Sheie (21:26): So you're seeing Dr. Pacella in a couple days. Let's check in after you talk to him, super excited for you to go see him feels like, it'll be a really positive appointment.

Kristen (21:38): Yeah. It feels like it's starting the next step. I'm looking forward to that.

Eva Sheie (21:44): Hang in there. I'm shipping you a cane-

Kristen (21:48): And a walker.

Eva Sheie (21:49): ...a walker and a wrist weight. So you can be balanced and not fall down.

Kristen (21:56): Oh my gosh. I know. Okay. We'll chat later in the week.

Eva Sheie (22:00): Okay. I'm really looking forward to that.

Eva Sheie (22:07): 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.