Weary and desperate for a break in the relentlessness of breast cancer treatment, Kristen makes the decision whether or not to proceed with radiation.
Weary and desperate for a break in the relentlessness of breast cancer treatment, Kristen makes the decision whether or not to proceed with radiation.
While the medical team followed a tight protocol during chemo and surgery, suddenly now to receive advice, statistics, or data she has to ask the right person and the right questions to inform her next steps.
Kristen describes the first radiation appointment, which is not a treatment but a team of “nerds” including a physicist who painstakingly measure and permanently mark her body with tiny dot tattoos. Like the laser dance scene from Oceans Twelve, the tattoos ensure the laser beam never misses its mark and only hits the cancer but can’t avoid the bones beneath, which might randomly also cause a broken rib someday.
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Miaderm used in the morning and after radiation treatments.
Aquaphor used at night.
My favorite tank tops.
My favorite bra.
How I stayed hydrated.
Meet Kristen’s doctors: surgical oncologist Dr. Louis Rivera, hematologist and oncologist Dr. Sonia Ali, plastic surgeon Dr. Salvatore Pacella, and radiation oncologists Dr. Anuradha Koka and Dr. Kenneth T. Shimizu.
About Breast Cancer Stories
Breast Cancer Stories follows Kristen Vengler, a 56 year old single empty nester in San Diego, from her diagnosis of hormone positive breast cancer through chemotherapy, mastectomy & breast reconstruction, radiation, and whatever happens after that.
In 2020, Kristen moved from Austin to San Diego to be near family and start her life over after a life-shattering workplace trauma. A few months later she had that terrifying moment in the shower we all hope we never have.
From her breast cancer diagnosis, through chemotherapy, breast reconstruction, and radiation, we experience each new milestone as it happens. This podcast is about what happens when you have breast cancer, told in real time.
Support the show by sharing online, writing a review, or donating at https://www.breastcancerstoriespodcast.com/donate.
Host and Executive Producer: Eva Sheie
Co-Host: Kristen Vengler
Editor and Audio Engineer: Daniel Croeser
Theme Music: Them Highs and Lows, Bird of Figment
Production Assistant: Mary Ellen Clarkson
Cover Art Designer: Shawn Hiatt
Breast Cancer Stories is a production of The Axis.
PROUDLY MADE IN AUSTIN, TEXAS
Eva (00:08): This is a story about what happens when you have breast cancer, told in real time.
Kristen (00:13): When did we last talk?
Eva (00:19): It was a big appointment day.
Kristen (00:21): I know, I was going to see the radiation oncologist and my questions were what happens if I don't do radiation and what happens if I do, as far as the numbers. My reconstruction surgeon, I said, "How do I know?" He was like, "Ask about the numbers. Ask about the numbers." That's what my oncologist told me.
Eva (00:40): It was July 7th.
Kristen (00:43): Oh. July 7th. Okay. That was almost exactly three weeks ago. It was interesting, because nobody had really told me "You absolutely have to have radiation." My surgeon was like, "I don't know why you wouldn't do radiation if you're opting for a double mastectomy to keep the cancer from recurring? Because, radiation is a way for that to happen, especially with the skin involvement you've had." He said the same thing about ... Even more straight forward about the hormone blockers that are in my drawer and on-deck for after radiation.
Eva (01:13): Did you feel like they were trying to make you make the decision about whether or not to do it?
Kristen (01:18): Mm-hmm (affirmative).
Eva (01:19): More than anything else?
Kristen (01:21): I think they wanted me to make the decision and I think they also have such a healthy respect for what each specialty does that they didn't feel like it was their place to step in. I've noticed that with this MD Anderson Group, that they're so complimentary of one another unsolicited. They really understand the boundaries of their specialty and also their knowledge.
Eva (01:47): Does it give you a lot of statistics and data to help you?
Kristen (01:51): Mm-mm. (negative)
Eva (01:51): No, they don't give you any of that?
Kristen (01:54): I never got the statistics on whether, unlike the chemo, of doing it or not doing it. One thing that I value that I didn't realize I would value is that I don't know what my percentages are of recurrence in general.
Eva (02:09): Meaning if you took all the people who had similar cases like yours and asked for the data on recurrence?
Kristen (02:17): Yeah.
Eva (02:18): You never asked for that number?
Kristen (02:20): No.
Eva (02:21): Nobody volunteered it either?
Kristen (02:23): Mm-mm.
Eva (02:24): Why does that make you sad?
Kristen (02:27): That part doesn't make me sad. It's more like ... Wow. The five year survivability of the situation, or the 10. If it's 28% chance that I'll live 10 years or a 50% chance I'll live five years. I don't want to know that.
Eva (02:48): You still don't know?
Kristen (02:50): No.
Eva (02:50): Well, that's because it's 100, so why would they bother?
Kristen (02:53): I know. I know. It's got to be. I think it's just I don't want to know that and nobody has offered it. When I got close to the question I think in my mind, somehow, and I asked my surgeon, he said, "Kristen, you're cancer-free until you're not." And when I talked to my oncologist about the scans, she said "You're only cancer-free until that next scan."
Eva (03:20): That's kind of like waiting for the law to catch up with you.
Kristen (03:23): I know. Seriously. That's kind of how I feel. I had to take it with respect, especially from my surgeon, because he's a cancer survivor. He said, "I live with that all the time," so he also is saying "As a cancer survivor here's what I've seen and here's what I think would be helpful with this pathology report." And it was about doing the hormone blockers and talking about radiation. I made the appointment with the radiation oncologist and I went in. The side effects, I thought I was recording the conversation and it turned out I wasn't. I wish I would have. Especially that one, because there was so much information. She said as far as the numbers go, she said "If you don't do radiation, there's a 30% chance of recurrence. If you do do radiation," I think she said 8%-10% chance.
Kristen (04:17): I had thought, okay, if I go in there and it's a five percent difference or a two percent difference, no way, no way. I'm not doing this. Then, I thought about it. A friend of mine brought up, "Well, if you don't do it and it comes back where you wish you had tried everything." I'm like, yeah, so because of the lymph node involvement even though it's just one lymph node that they found out of the 11, it changes where they're going to do it. It changes I believe the urgency to do it.
Eva (04:53): How many times have you gone?
Kristen (04:56): I haven't gone to any, yet.
Eva (04:58): You haven't started?
Kristen (05:00): No. Today is what they call mapping and simulation. From what I understand, it's about an hour procedure. Not even procedure, but you go in and this is where the radiation oncologist works with their team. They're going to have some kind of a cat scan going on so that they can see exactly where they need to target with the lasers. The reason that my right one where it had cancer so much bigger than the other, one reason is because when the laser beams come across, they don't want it hitting the left breast and damaging that skin because they come from different angles. It's like a light show, I think.
Eva (05:44): I'm visualizing, like ... What's that thief movie where they have to crawl over the lasers to get to the treasure?
Kristen (05:51): Yeah. Oceans 11 or something?
Eva (05:54): Oh, yeah. In the cage under the casino.
Kristen (05:57): Yeah. The lasers are coming I guess from different directions depending on where they're going to try to hit. From what I understand, it's kind of like the right quadrant from the center of my neck, down, around, and back up the side of my arm because the lymph nodes in the arm and they want to get the chest wall. I think because of the skin involvement that I have, it makes it more important to get the chest wall. Then, they're also going to be zapping all of the lymph nodes in that quadrant which are in the arm, the collar bone, and the neck.
Eva (06:36): I just sort of naturally want to visualize what the room looks like and what the laser looks like. Certainly it doesn't look like the underside of a casino, but are you laying on a table?
Kristen (06:48): From what I've seen, because I've looked at some of the stuff and every place is a little different. You're laying on a table and it's kind of like an MRI machine, but wider. It looked like there's kind of a tunnel, but it also looks like there's something that comes up down over you. It's 15 minutes long from what I understand.
Eva (07:06): Oh, that's all. Okay.
Kristen (07:06): Yeah. But, today what they're doing is they're mapping where these lasers are going to go. Then, they're going to put freckle-type tattoos in the spots that the lasers are going to hit. There's a lot of women who don't want the tattoos, so they'll have them do a sharpie and put a thumb over it or whatever. I'm like, you know what? Do the tattoos. I want it exactly precise. I don't want anything running, like a sharpie from the shower or anything. That correlates with my conversation with the oncologist. There are risks that the lasers could hit your lungs and that they could hit your spinal column. That they could hit your voice box. They're definitely going to be hitting your ribs. I was told definitely there's nothing they can do to protect your ribs, so one of the side effects is that a few years from now, 10 years, whatever, a rib could randomly break. Okay! Cool.
Kristen (08:09): They keep an eye on you. I have appointments with my surgeon every four to six months, with my oncologist every four to six months, probably now with my radiation oncologist every four to six months to monitor all of this.
Eva (08:24): Are you still in any pain from your surgery?
Kristen (08:27): I'm in pain from ... I don't believe it's from the surgery. I'm in pain from the expander fills that have happened. Dr. Pacella told me straight up it's going to hurt. It's going to be uncomfortable. These feel like cantaloupes or watermelons. They're not comfortable. They're just a couple things that are painful. I'm going to say something really quickly, because I have found through this whole journey that I kept getting pissed off about people that weren't telling me things. You remember? I was like, why didn't they... Things they didn't tell you about chemo, things they didn't tell you about this, things they didn't tell you about that.
Kristen (09:05): I had a real good friend of mine who had breast cancer. She didn't go through radiation, but with expanders and all that. She said, "Kristen, I didn't want to tell you how hard this was going to be because I didn't want to break your spirit." I think now that's why they don't tell you how hard it's going to be, because a lot of people wouldn't do it. With that in mind, I was thinking about all we're doing here and how we're trying to help women. The last thing I want to do is scare anyone, but I want to be super transparent also because I wish people would have told me. But, that's me. I don't put my head in the sand and I kind of wish I would have, so I didn't feel so much.
Eva (09:52): I'm gonna agree with you, but I'm going to agree for a different reason and it's because of all the work I did in surveying surgery patients. I surveyed for five years. I think we ended up over 200,000 people we had surveyed after all different kinds of surgery. The number one thing that made people dissatisfied was not being prepared for what was going to happen in recovery. I have hung on to that. It's what drives what I do for a living now. I want people to be prepared before, during, and after anything.
Kristen (10:29): I completely respect and value that. You know me, I'm always going to be transparent and I'll always give you as much information or more. What made me say that was that I didn't realize what was hurting me so badly until a couple weeks ago when I was like "This is where it really hurts" to my doctor. The expanders, for people who don't know what they are, it's basically placeholders for your implants. That was the brain fart. That's the chemo brain right there. I couldn't even think of it. They put the expanders between the chest wall and the peck. The reason my right breast is so much bigger is because they're stretching the skin more than they need to. They're stretching it because with radiation there's so much damage to the skin. The skin gets thinner. There's a lot of damage to it. A lot of times it will shrink down to where it's holding on really tightly to the muscles or to whatever is under it. They're trying to expand it so that it evens out.
Kristen (11:33): These expanders are flat on the bottom, then there's room for a certain amount like a balloon, and there's a port that they put saline in. The expanders are sutured into my chest wall, so when I move ... Especially when I'm on my back, when I move it hurts a lot. There's probably between a quart and a half gallon of fluid on this breast that's laying on my chest wall that has this flat piece that rubs against it. Not directly, because I know there's the stuff that they put in, but that's pretty painful and nobody told me that that would hurt. Now, as the fluid inside gets to be fuller, it hurts more. There's a lot of times when I'll stand there and I'll just hold the side of my boob up. I'll just hold it from underneath. I'm like-
Eva (12:30): To give it a break?
Kristen (12:32): Yeah. I wish I would have known about that. But, the pain that I've been in has to do with the size that the right breast is. Normally, they put between 50 and 100 CCs per visit in the expanders. With doing radiation, they didn't want too much time to go by between surgery and beginning radiation so we were on a fast track. I would go in and get 100 in each and then about half-way through, we stopped filling the left one and we're just doing the right one. Last week, I had 200 CCs put into the right one. Then, he said it's going to be painful. I have some muscle relaxers and I'm taking some Advil and Tylenol, the heating paid, and a little bit of ice here and there.
Kristen (13:24): What that's done is all of that has put pressure on my arm and I can't raise it as much, so what is helping is I have PT for lymphedema, because I'm kind of on the cusp of getting lymphedema in my right arm. It's not there yet, but I'm working with somebody so I don't get it. There's a chance of this, there's a chance of this, there's a chance of this. You read past it, because people don't say how often it happens. I just noticed that my underarm hair started growing back and there's these long hairs like this, right?
Eva (14:00): Nobody told you.
Kristen (14:01): I couldn't see it, because I can't raise my arm enough to see it. Anyway, that's a really long answer about the pain. I still sleep, I call it the pillow throne. I have a wedge and I have pillows. Right now, I've got probably three or four pillows behind me but there's a pillow that's underneath my right arm so that it's not pulling down on that area.
Eva (14:25): Do you usually sleep through the whole night or do you wake up during the night a lot?
Kristen (14:29): I wake up. It's position. Sometimes I've slid down. I keep the pillow under my knees so I don't slide too much. Right now, I've been taking some Robaxin to relax these muscles that are around this beautiful breast. I also take melatonin. There have been a lot of times when I've been up two and three times at night, but in general I've kind of gotten used to sleeping on my back. I'm a side sleeper generally, but I don't want to feel the pull on my chest wall from them.
Kristen (15:09): Last weekend I was laying in the bed and I actually couldn't get up for about 20 minutes, because I could not get in a position where it wasn't pulling drastically. Then, all of a sudden, I was able to lean on my right arm and pull myself up, and it was fine. It feels like things kind of lockup, but it's like pain. I don't really know how to explain it. I would never say to anybody don't get the expanders. I certainly wouldn't say get a mastectomy, go flat, and then do the expanders and add another surgery to you as a recommendation. It's everybody's complete journey on their own and their decisions. I wasn't emotionally strong enough to see myself disfigured any more than what I am. I'm not a vain person. I wasn't obviously attached to my breasts, but it's just such a change from the last ... I don't know, when did I get boobs? When I was 12? Okay, from the last 44 years of looking in the mirror. I already have a constant reminder when I see my hair. My hair is growing back, which is awesome.
Eva (16:25): It looks really good.
Kristen (16:26): Thank you. I don't feel like it's a body image thing or anything like that. The only way I can say it is I don't recognize my body. I don't recognize my mind. I don't recognize my voice. I don't recognize the way I walk through the world right now and that's really hard.
Eva (16:44): One of the through lines is that you do keep moving back towards the things that are truly you.
Kristen (16:50): I hope so.
Eva (16:50): ... You went back to work, so you must have been feeling good enough to do that. It's not easy taking care of a toddler and he must have been so happy to see you.
Kristen (17:04): Yeah, he was. He was and so were Crystal and Eric, the family. They're so good to me about being flexible, because I can't lift him. The first day that I saw him, I tried to wear my pink bra that I have that covers a lot when I'm caring for him, because I showed him that Miss Kristen has a boo-boo and that we have to be careful with that area. I'm having to reprogram him into I'm not somebody you can bounce off of right now. We would wrestle and he would run from Mommy to me and just be all over. That kind of stuff. When he wants to be picked up to look at something, he'll say "Hold? Hold?" And I'll have to say "Miss Kristen can't hold you right now, remember?" I'll say, "We can do this" and I'll help him ...Like, he was on, we were on the stairs and he didn't want to go down the stairs. I'm like, "Well, let's sit down on our bottoms and let's go down."
Kristen (17:59): I'm having to kind of modify that, but I'm my own worst critic because his Mom has to get him out of bed, and I'm five weeks post surgery so in the next couple weeks I should be able to lift him. I am glad I'm staying here with them, because my commute is literally, walk out the bedroom door and go over to his room. I'm here for another three weeks. I am moving towards the things that are me. It's just I've only been here 11 months and hadn't gotten my footing on my life yet here before all this happened, so I didn't really know what it looked like here, yet, completely.
Eva (18:43): I want to ask you about the other boy in your life. I know it was Brian's birthday the other day. Did you get to talk to him?
Kristen (18:49): I didn't.
Eva (18:51): Sorry.
Kristen (18:55): That's okay. I just love him so much and I want him to be okay. I hope that it's he's preoccupied and having a good time, and that he's not afraid to talk to me about it. We always had a relationship where we can always talk. I sent him pictures throughout the past week. I was like, "It's Happy Birthday week" and it was pictures when he was little and stuff. Then, on his birthday I sent him a picture "It's birthday weekday!" And sent him another silly picture. You know. You do what you do, but no I didn't get to talk to him. That was kind of a hard day.
Kristen (19:34): But, some of the times that he has been available and he was under my care, we had a lot of fun and we made a lot of memories. I know he has those inside him. I just hope he's not frightened and not being able to articulate it.
Eva (19:56): If I had to guess, it's probably primarily just denial and maybe a little bit frightened. It's probably more "If I ignore this it will go away. There's no way my Mom is not going to make it. She's going to be fine. She's always fine."
Kristen (20:13): She's always fine, she's my Mom. She's always a little crazy, but she's always fine. There's usually a speed bump going through the hard stuff. I was going to tell you that the other night, last Friday, I had my first walk into the world really and I went to the Pageant of the Masters which ... Oh my gosh. You're going to have to come out here in the summer and I'll take it. It's in Laguna Beach and it's this amphitheater, and it's art basically, but it's living art. This one was called Made in America and it was American artists. They took it all the way from the Revolutionary War all the way to the present. They give you the history on these artists and on the pieces. It's really cool. They were all live people that were made up.
Eva (21:03): Oh, that is so amazing.
Kristen (21:06): It's so cool and they're all volunteers. The list to do this is so long. To be in the Pageant of the Masters, to volunteer to do it. There's an orchestra underneath that's playing music along with it. It was really cool. That was the first time I've been out in a group of people since all of this. I didn't feel good in my skin. I loved watching it, but walking in I felt very unsteady and part of that is because I was protecting my right side because of this expander situation that's going on. I just hadn't navigated through people since COVID. Especially not after chemo, surgery, and all of that. I just didn't really know how to navigate the world. It was very weird, because I'm not that person. I'm the person who is like, "Hey, let me help you through it." I had a very hard time. I loved it, but I had a very hard time.
Kristen (22:14): It's not about vanity. It's about not knowing who I am, I guess, anymore because there were some things that took away my identity in a lot of ways. People go through that when their kids get older and all that kind of stuff. It was just as a single woman, cancer-free in the middle of all the treatments. In pain, not knowing how to walk in the world in my skin anymore. There was a blog that I read the other day. It was someone who put into words what I was feeling. It talked about how these things on your chest aren't part of you anymore. They're your neighbors. They don't feel like you, but I'm grateful to have them. I'm grateful to have this option.
Kristen (23:10): One thing I wanted to say to you is I think at the beginning of all this, I said something about there's no better time to get this when I have good insurance and I have good support. I flippantly said, I believe, something like all I have to do is walk through the process. That was like going on a 10K walk, right?
Eva (23:37): Just check-off the stuff on the list, Kristen. Just check-off things.
Kristen (23:41): Yeah. Don't think about how you'll feel in the middle of it.
Eva (23:44): It reminds me of the frog and toad story where Toad gets up in the morning and he says, "This is what I'm going to do today," and he makes a list. It's like, "Get up" and he gets up, he crosses it off the list. Then it's like, "Go to Frog's house," and he goes to Frog's house. Then, the wind blows his list away and he's like, "I don't know what to do now. I don't have my list." It's very [crosstalk 00:24:09]-
Kristen (24:10): Yeah. I totally get that. That's how I feel. I have the best doctors, I have the best support, I have the best insurance, I have the best boss. I have the best job. I have the best people in my life. If anybody's listening to this they're probably like, "Okay, bragger"-
Eva (24:29): Pollyanna.
Kristen (24:30): Good for Pollyanna. Good for you! A lot of that is also what I've learned to see as opposed to I have to see things that way if I let myself go to a negative place.
Eva (24:45): You have all these things because you chose them and cultivated them. They didn't just happen to you.
Kristen (24:52): Absolutely. Thank you for saying that. Yeah. It's funny. For probably six to eight months before I got sick, people would say "How are you? You know, blah, blah, blah?" I'm like, I'm really good. I love my life. It's great. I'm like, the best part of it is the only people I have in my life anymore are people that I have unconditional love for or vice versa. Granted, my new job where I get to have that, because I chose that. Now, I do not live large. I don't make a lot of money, but I love my family that I work with. I love my job. I love that at the end of the day I don't have to deal with people I don't want to deal with.
Kristen (25:34): All of that said, when people have asked me in the last month, "How are you feeling?" I've said I feel like I want to go to Spain for six weeks rather than do radiation.
Eva (25:44): Good answer.
Kristen (25:49): That's my way of saying I just need a fucking break. Sorry. From all of this. It's like my body's been in a boxing ring since the beginning of the year. Just when it's starting to stop bleeding, then there's the ding, ding, ding get back in there. It's very hard to keep going. I'm so grateful that I have this option. It's just ... What's going to happen next? What's the next side effect? Am I going to put on 42 more pounds from the hormone blockers?
Eva (26:31): Maybe.
Kristen (26:32): Maybe.
Eva (26:33): Then you're going to have to lose them again. What a pain that's going to be.
Kristen (26:37): I still have 42 pounds on me from the effects of chemo and nothing is in the same place. I'm carrying weight where I never have. People think that since treatment is over, since your hair is growing back; everything is fine. Look, you don't have cancer anymore. Look, your hair is growing back. That's when it starts. That's when you start grieving who you were and who you're not anymore. Not to say in a year, I won't be that. I'm never going to be the same. Physically, emotionally, mentally in good ways and hard ways. I don't know that I'll ever stop looking over my shoulder wondering where are the cells, where are they going to pop up? I can't think of that. I just have to take it, like the next step at a time. That's what Dr. Pacella told me. He's like, "Kristen, this is a journey. You've got to chunk this. You've got to get from this appointment to surgery, from surgery you get to go to your pre-op appointments. Then you chunk that.
Kristen (27:56): I'm really trying to do that.
Eva (28:02): Go back to what you said at the very beginning about did you do everything you could possibly do?
Kristen (28:08): Yeah.
Eva (28:09): What was in my head when you said that was we all know that you are doing everything you could possibly do, but you can't make time go faster.
Kristen (28:17): No.
Eva (28:18): That's what makes it so hard. That's the thing you can't control.
Kristen (28:24): Right. I feel like I could have eaten better during chemo. I'm like, really? That's a stupid statement. Is that the title of the book? I Could Have Eaten Better During Chemo? Really? Because I couldn't eat much. I was just trying to stay alive. My doctors were ecstatic that I was gaining weight and I was like, stop, that's not okay. They were like "No. We'd rather have you gaining than losing." My labs were great all the way through. Not all the way through, I mean comparatively. Yeah. I could have eaten better during chemo.
Kristen (29:05): Going back to what you were saying, I can't go back and wonder what if I would have done radiation? What if I would have done the mastectomy first and not the chemo, since the chemo didn't have that much effect? That's a hard pill to swallow right there. I should have eaten better during chemo, the chemo I shouldn't have done. But, I would have wondered. Anyway, doing the radiation, doing the hormone blockers, I just have to do those things in order to stay alive. That sounds so dramatic.
Eva (29:40): It's sort of like hiking in the dark. You just have to keep your feet close to the ground and keep taking one more step.
Kristen (29:49): What a great analogy, Eva.
Eva (29:53): I used to be a huge klutz, massive. When I was in college, I worked at a camp in Montana. I used to run around in the dark with somebody who convinced me not to use a flashlight so I had to completely change the way that I walked so that I wouldn't hurt myself. I didn't realize that it could be done until I did it.
Kristen (30:18): That's how this feels. I have to say I've been dreading the radiation process. Today, they'll do the mapping and all that. Then, within a week or so, they'll do something called a dress rehearsal where they'll basically do a radiation treatment without the radiation to be sure that everything is lined up with the tattoos, then the radiation will start.
Eva (30:46): That's actually still a couple weeks out?
Kristen (30:48): Maybe a week and a half. From what I understand, it's five days a week for six weeks. Then, I start the hormone blockers. This is kind of like my little vacation. Okay. How is getting a double mastectomy, having reconstruction, and getting these things filled up; I don't know how that's a vacation. But, it is in that there's no poisons or things that have side effects going into my body right now. For five to ten years is how long I take this hormone blocker. My oncologist said, "Yeah. I'm going to call in a prescription. You're going to take this pill once a day for five to ten years. I was like, "Whoa, whoa, whoa. Wait. Isn't it supposed to be once a day for 10 days? Or two weeks?" I, cumulatively, have not been married 10 years. I don't know that I can commit to that.
Eva (31:57): When you get to the end, you'll be able to say I was on this drug longer than I was married. That's awesome.
Kristen (32:02): Exactly. I think that the determination is in remission, there's recurrence and stuff like that. This is that little piece that I have between the very beginning of the year to five to ten years from now where there's not something in my body that's causing a side effect. One of the big side effects of the hormone blockers is osteopetrosis and bone density issues. I have a bone density scan for a baseline next week. I can do the supplements and I can do all the things to keep it away. It's just that's the big one that my oncologist is worried about. One thing I will say I feel fortunate about is that ... A lot of things I feel fortunate about, but in this process is that I had gone through menopause. A lot of times, women who have not gone through menopause get thrown into menopause after all of this.
Eva (33:03): Oh, man.
Kristen (33:06): These hot flashes come and they don't know what it is. They have all this mid-belly weight, because their trunk thickens and stuff because of lack of estrogen. This is the women who have hormone positive cancer, so that's super important to point out. The reason that I'm having to do the hormone blockers is because my type of cancer is estrogen positive. It's estrogen positive, progesterone neutral or negative, and HER2 negative which is what they say you want because they have something they can do to block the estrogen. Mine is 79% positive. It's big, not just a little bit. That's a whole nother episode, is talking about all the estrogen that I had in my body to try to keep ovarian cancer away because my Mom had ovarian cancer.
Eva (33:59): Let's talk again after your first radiation.
Kristen (34:03): Okay.
Eva (34:04): When we get back together, I want to hear about the mapping, the test drive, the first one, and the bone density scan. Those are sort of your next little cluster of things that are going to happen.
Kristen (34:17): My next party. All my party invitations.
Eva (34:21): Yeah.
Kristen (34:24): That's how I kind of look at it now when I get in the portal, when I get the reminders. I'm like, oh, it's my party invitation. A friend of mine today texted me and said, "How are you feeling?" I said, "Honestly? I'm in an incredible amount of pain. I'm anxious. I'm scared and I'm on the verge of crying all the time." It was hard for me to say that, because I do want to be Pollyanna and I do want to be positive. It's just god, Eva, I'm so worn down.
Eva (35:01): Who are you holding it together for?
Kristen (35:04): I don't know. Myself, I think. I think because of the bouts of depression that I've had, I don't want to let myself too loose, yet. I don't want to stay in bed. I can't stay ... I think I'm holding it together to try to rewire myself from those feelings, because when I had those feelings before, it wasn't a good outcome. I handle my body and my mind so much differently than I did before. I don't know. I just want this to be the story I created where I go and I do this, I do this, I do this, and I'm cancer-free, and I go back and my whole life is back to normal again.
Eva (35:57): Let me get Frog and Toad and tell you how it ends. Hang on. I'm serious.
Kristen (36:01): Okay, go. Okay.
Eva (36:04): Okay, so you know he makes this list. Wake-up, eat breakfast, get dressed. Go to Frog's house, take a walk with Frog. Then, the list blows away and Toad doesn't know what to do. "Hurry," said Frog, "We can run and catch it." "No," shouted Toad, "I cannot do that, because running after my list is not one of the things that I wrote on my list of things to do." Frog ran after the list, but he could not catch it. "I cannot remember any of the things that were on my list of things to do, I will just have to sit here and do nothing," said Toad. Toad sat and did nothing and Frog sat with him.
Eva (36:49): After a long time, Frog said, "Toad, it's getting dark. We should be going to sleep." "Go to sleep! That was the last thing on my list!" What is the point? I think the point is it's okay to just do nothing.
Kristen (37:04): Yeah.
Eva (37:06): Don't worry about your list and then go to sleep.
Kristen (37:08): Then don't worry about my list. Yeah. Just go to sleep, Kristen. You'll wake-up in the morning and the whole thing's better.
Eva (37:17): Make a new list.
Kristen (37:18): Make a new list.
Eva (37:19): Or don't make one. It doesn't matter.
Kristen (37:22): It doesn't really matter. I think that ... And, this is so Pollyanna, so cheesy. The list I consistently do make ... Oh my gosh. People are going to be like (gagging sound), is the gratitude list when I go to sleep at night.
Eva (37:39): It's working.
Kristen (37:40): As I go to sleep, that's how I fall asleep. When I'm in my dark place, I try to reach out to somebody who may need something and just say, "Hey, how are you?" Or I try to make a gratitude list.
Eva (38:01): 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 firstname.lastname@example.org. 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.