Oct. 21, 2021

Day 28: This Might Be What Kills Me

Day 28: This Might Be What Kills Me

4 weeks after starting chemo, the “new normal” is here. Kristen describes what it feels like to have no hair and as the physical effects of chemo present new challenges, she realizes that breast cancer could be what ends her life.

4 weeks after starting chemo, the “new normal” is here. Kristen describes what it feels like to have no hair and as the physical effects of chemo present new challenges, she realizes that breast cancer could be what ends her life.

Kristen’s ongoing determination to quickly learn as much as she can about her situation leads to weird facts about real hair vs. nylon wigs and practical information for navigating nonprofits to qualify for financial support.

Ever the Pollyanna, she remains hell bent on approaching each day with positivity and courage as the chemo wears her body down.


Support the Breast Cancer Stories podcast

Subscribe to our newsletter here: https://breastcancerstories.substack.com/subscribe

Breast Cancer Angels

Cancer Angels of San Diego

Co-Pay Relief program through the Patient Advocate Foundation

Silicone Popsicle Molds

Bamboo Sleep Caps for hair loss

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

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.



Eva Sheie (00:08): You're listening to Breast Cancer Stories. I'm your host, Eva Sheie, and my co-host is Kristen Vengler. It's day 28. Every day brings unexpected changes that require constant adjustment to the new normal. We're both startled by how fast things move along. The new routines, not new anymore. Kristen's hair is already gone, grief is heavy and constant, and we're not sure what's coming next. This podcast is about what happens when you have breast cancer, told in real time. What does it feel like to not have hair?

Kristen Vengler (00:52): My head goes from being cold to being hot. It's liberating, I'll tell you that. I save a lot of time in the morning. But what it really physically feels like is, you know how your head feels when your hair is wet? It feels like that all the time, but sometimes I'll put the hat on and I'll just be like super hot. But at night when I go to sleep, it reminds me of the "Ma in her kerchief and I in my cap, just settled down for a long winter's nap." It looks almost like a swim cap, but it's made of bamboo fabric, to keep my head warm at night. And then I wake up in the middle of night and I'm hot and I take it off.

Eva Sheie (01:33): Well, you sound really happy and positive.

Kristen Vengler (01:36): Yeah.

Eva Sheie (01:37): But you've had a little bit of a rough week, haven't you?

Kristen Vengler (01:38): Yeah, it's been a rough week. Last week, because my liver numbers, they gave me like 50% of one of the chemos. And then this week my liver numbers were better, so they gave me the full dosage, which is great to battle the chemo, but it makes it harder symptom-wise, and the anemia is getting worse. Whenever I think anemia, I always think, "Oh, I can eat liver. I can eat iron. I can eat iron rich foods to supplement that." So I can do that, and that can keep that side of my blood count better, I guess. But basically what the chemo is affecting, the blood cells that it's affecting, I can't do anything to fix it. That's what happens, and having had three sessions of chemo, the chemo is really in there for four days, Monday, Tuesday, Wednesday, Thursday, and then by that time it's leaving your body. So now I'm on day three or four.

Kristen Vengler (02:35): And so after the fourth day, it's just your body fighting to build back the cells. And so right now the chemo is in there really killing all the fast moving cells, which is great. It's just Wednesdays are the nights when I'm the most tired, and then I get probably the most emotional because I'm tired. And today was, I'm going to try not to cry. I'm sorry.

Kristen Vengler (03:05): Today was the first day, I was in the shower this morning, and I really realized I could die from this, because I've always been so positive, and I am positive, that nothing can take me down and I can battle this, and that if I'm just positive enough, and I have good doctors and good people around me, that everything's going to be okay. But this morning it just came into my head, it was like, "This could go the other way you know? And how do you handle that if it goes the other way?" And I tried not to think too long about it, but I think that I've also been so in shock that it's actually cancer because everything happened so fast. And it hasn't even been two months since I had the diagnosis.

Kristen Vengler (04:02): The diagnoses was, just that I knew that I had cancer, not even knowing like what we were going to do about it, was December 18th. And so, within three weeks I was in chemo and it all just moved so fast. And so I've just been really, really working on my positivity, and my faith, and those people who surround me with so much love that it's hard to...It's hard to think that you're not going to make it.

Eva Sheie (04:29): It sounds kind of like you turned some kind of corner this morning.

Kristen Vengler (04:33): Yeah.

Eva Sheie (04:34): Not a good corner or a bad corner, but just a corner.

Kristen Vengler (04:37): Yeah, it was just kind of a reality corner. I keep thinking that if I just do the right things, it'll go away, but it won't. Maybe it will, but that's down the line, and I think that what I've been really working on this week and last week was, I know I have to have physical endurance, but I need to have emotional endurance too. And when there's certain things you can't control, it's tough. And I'm not vain about my weight or my hair or anything like that, but my stomach wants things that are comfortable, like healthy carbs and healthy proteins, and cold fruit, and frozen fruit and things like that, and those weren't things that I usually had in my diet. I usually was doing lean meats and very few carbs, and just because that's what worked for my body type. And so I put on 10 pounds in a month, and that's one thing that I could really control was how I felt, and how I could make myself feel through the way that I treated my body, and I haven't been able to do that.

Kristen Vengler (05:41): And my doctor's glad to see that I'm gaining weight because a lot of people lose weight, because they can't eat. And so it just kind of feels like the things that I was used to having balance in, I can't do that anymore. Or, right, I'm struggling to get there. But I was given a referral to get acupuncture by the integrative medicine specialist that I talked to last week, the doctor, and to have a nutritional doctor talk to me a little bit about what more I can do, and just in a referral to talk to somebody, you know, a support group and stuff like that.

Eva Sheie (06:14): Yeah. I was just going to ask you... How are you thinking about being less hard on yourself for things like how you're eating?

Kristen Vengler (06:22): The first thing is, I have to be comfortable. And tonight I had some good protein, and some brown rice, and some avocado toast, and some chicken, and that's all really good food, you know? And I felt better after I ate it. So I'm just trying to find the balance, and that's the only thing I can do to not be so hard on myself.

Eva Sheie (06:47): Yeah.

Kristen Vengler (06:47): And I love the area that I live in. I like to walk and everything. It's just, I have no energy to do it, and so the sedentary stuff doesn't help either. And I'm just going to like give myself grace and get rest. I've really learned over the last year or two that depression is caused by being sad about things in the past, and anxiety is caused about being fearful of things in the future, and so just living in the moment. Lee always says that, live in the moment, live in the moment, but that's all you really have. And I think that going and doing the things that bring me joy, like my job, and reaching out and talking to friends, and just leaning on those people who just love me, and being able to feel what I need to feel in the moment, and giving myself that grace to do that.

Kristen Vengler (07:39): It's really a lot easier said than done when you're feeling like shit, and that's your moment. That's your moment. And you're hoping that the next moment you're going to feel better. And so you're just doing a lot of self-talk to push yourself into the next better moment.

Eva Sheie (07:54): It's just a season, and you're going to get through it.

Kristen Vengler (07:57): Yeah. And tomorrow I'll probably feel great. I mean, Saturday, I was in here making popsicles and guacamole, and rearranging things, and I felt really good.

Eva Sheie (08:07): I have to wonder if what you said earlier about the chemo taking three or four days to get out of your system is... You're on day three, and maybe all of that stuff is just about gone from your system, and when it's gone, maybe things will turn around? I'm just guessing.

Kristen Vengler (08:25): So, we've talked before, I think the night of chemo, and the day of chemo, they like pump you full of steroid and anti-nausea medication, two different ones, before they even put the chemo in your body. You know, and you kind of marinate in that, is what they call it.

Eva Sheie (08:41): It's too bad they can't give you like gravy and, you know like Thanksgiving gravy, and other fluids that are just joyful, like eggnog and...

Kristen Vengler (08:52): I know. And popsicles make me happy. You said it best, like how can I give myself a break? I feel that so many things are in place that I've just really got to walk through this. I can't sub out. And there's times when you just feel like you're exhausted and you want to sub out, and so I just have to keep remembering, this is my job. My job is to take care of myself, and to go do what I'm supposed to do.

Kristen Vengler (09:19): Getting to go every day and play with a one-year-old, that got me out of the shower today, that got me out of my tears. And I walk in, there's just this big smile, and he runs toward me. And I mean, you know, like how is that not the best day ever? And it's funny when he went from seeing me with my long hair, to my short hair, and he was looking and looking. And then, the next week, he sees me with no hair. He thinks it's really funny, and he touches my head, and he kisses my top of my head. It's about as cute as it gets. And he has a little beanie that he wears around half the time. It's just sweet.

Eva Sheie (09:53): Ah.

Kristen Vengler (09:55): I know, I know. And his parents are amazing, I couldn't be luckier to be where I am.

Eva Sheie (10:03): What's the rest of your week look like?

Kristen Vengler (10:05): Let's see, tomorrow and Friday, I'm going to go to work, and I'm going to go see one of the social workers at the hospital, who's going to help me fill out some information to get some financial and emotional support stuff going with Susan G. Komen and a couple of their places. There's so many places, especially with breast cancer, because it's so well-known, and so many well-known people have had it. There's a lot of foundations that'll help in all different kinds of situations. Some will just help with getting you a wig, if you want to wig. And there's all kinds of different qualifications, and he's going to help me weed through some of that stuff so that I can just see what my options are.

Eva Sheie (10:47): I'm interested to hear more about Komen when you come back because for a long time they were under fire for not really spending their money on anything that actually helped people.

Kristen Vengler (10:58): Interesting.

Eva Sheie (10:59): And so I've had a long held opinion that that's not where you should send your money, so maybe you can do a little digging and-

Kristen Vengler (11:08): Yeah. Well, I'm applying. There are certain income thresholds and all of that, based on your family size and all of that. And they ask very specifically... Is it utilities? Is it your co-payments and your hospital bills? Is it your health insurance? Do you need help finding health insurance? And so they do require your doctor to send a letter, and so it'll be interesting to see. I can tell you first hand, afterwards, what I end up finding out from them. Because it's like a three-page application, but on the last page is, what's your financial institution where we can send the money? So it'll be interesting to see, I'll be happy to tell you.

Eva Sheie (11:50): Yeah, I think that the sort of commonly held opinion is that most of their money goes toward raising awareness, which is just the visibility stuff, and not actually helping people with breast cancer. So, will you do a little detective work and ask them?

Kristen Vengler (12:05): Absolutely. When I meet with the social worker, I'll be sure and ask what his experience has been with that because he had a couple other organizations, one was Breast Cancer Angels that are here, and so I'll let you know when I find out, because I think that's really important. If there's anybody listening to this that needs that kind of stuff, I think that it's important for them to know.

Eva Sheie (12:25): It is, and it's also important if people want to send money or donate money, that they know what it's going for and where it ends up, because-

Kristen Vengler (12:33): Right, oh absolutely.

Eva Sheie (12:34): I used to have a presentation where I talked about this, and there was a KFC chicken bucket that was sponsored by Komen and half the bucket was pink, and I was like, "This is too much."

Kristen Vengler (12:47): Yeah.

Eva Sheie (12:48): That was probably 10 years ago.

Kristen Vengler (12:50): Yeah.

Eva Sheie (12:50): It was a long time ago, if it's changed, I sure would love to pass the message along.

Kristen Vengler (12:55): Yeah, absolutely. And when I was looking into some of it, I mean, it wasn't Komen, but it was another group, I want to say it was Cancer Angels, not Breast Cancer Angels, but Cancer Angels. And it said, one of the things was you need to show proof that you have less than a thousand dollars of liquid assets to be able to use-

Eva Sheie (13:15): Wow.

Kristen Vengler (13:16): To qualify, to be able to show that you have less than a thousand dollars. And they were saying things like, "If you need to, send us your eviction notices." I can't imagine going through this, with that hanging over my head. I have quite a bit in co-payments and deductibles that's already been racked up, and it's uncomfortable, and the reasons that I'm looking into this especially is, I don't know how much longer I'm going to be able to work. I've already cut my hours by down by about 10 hours a week, and so that comes out to quite a bit over the course of the month.

Eva Sheie (13:51): I need some help, so when you get to the point where you can only sit on the couch, then I'll give you some projects to do.

Kristen Vengler (13:56): You got it. No problem. But yeah, I mean, it's when I have surgery, that's going to put me out for a couple months, a month or so, for sure, especially if I can't pick up a 30 pound baby. And I know that it's all going to work out. It's just that most of these things, and it's important to know, need to be applied for and approved and confirmed while you're under treatment, and while you're actually having chemo or having surgery and dealing with the cancer, and that you haven't been diagnosed as cancer free. Because there were things that said if you're having reconstruction from cancer, you're not eligible, only reconstruction, you're past the chemo, past the radiation, past the mastectomy. It's really important, I noticed today in looking at things, to be timely, and the last thing you feel like doing is that. Part of, some of the emotion this week might be also facing those things. This is a possibility, so pull up your panties, and let's go look and see what the resources are, and all that kind of thing.

Eva Sheie (15:01): Yeah. But it's daunting. It's work and it's daunting.

Kristen Vengler (15:04): And thank goodness that I'm educated, and I've done benefits, and I understand medical insurance, and I understand how to go about doing all these things. I used to fill them out for people doing HR. And so I would guess that 80% of people know less than I do about it, and so that's why I'm really glad there are social workers. But I had to go in and ask, it wasn't something where they just came to me. And so I think that that's something that I would advocate for, the hospitals say, "Hey, here's a social worker."

Eva Sheie (15:35): I know most people don't know that reconstruction is supposed to be paid for by insurance.

Kristen Vengler (15:40): Right. I didn't know.

Eva Sheie (15:42): Yeah.

Kristen Vengler (15:42): Until I really looked into it, and I found the social worker by writing a note to my oncology nurse and asking her for a prescription to get a head prosthesis or wig. And she said, "Well, you have to be really careful the way that you ask it, and we don't do prescriptions for it, but usually, at least this group doesn't." But that what you do is you go in, they referred me to a shop, a wig shop, that does do medical billing, that you usually pay for it out of pocket, and then you get reimbursed. And I think a lot of it is because they're trying to be sure that there's a medical need for it. And I'm thinking, "Well, how many people really want to go get a wig?" I would have to probably send them pictures of myself and show that I had lost my hair due to chemo, and that kind of thing.

Eva Sheie (16:28): Are wigs that expensive, that you would try to defraud the wig shop by pretending you had cancer to get a wig? That just seems crazy.

Kristen Vengler (16:36): There are some that are $2,000 and $3,000 that are real hair.

Eva Sheie (16:39): Oh my gosh.

Kristen Vengler (16:40): They're ridiculous. Yeah. If they're made of nylon fibers or whatever, they're hotter, and so they're not very comfortable. And so a lot of people sweat through their wigs. But when I was looking into them, and I kind of just put it aside for now because it was a little bit overwhelming, but there are certain net wraps that you do. And the way that they do it determines how real it looks, or how uncomfortable or comfortable it is, and the real hair ones obviously breathe better. At this point, I don't go anywhere, I'm not out dating, I'm not going to gala events. I mean, it's COVID, nobody's doing a whole lot. I mean I don't hate seeing myself in the mirror so much that I need a wig. Every once in a while it's just a reminder, though, that I have cancer. But you know what I'm grateful for this week? That my eyebrows haven't fallen out, and my eyelashes haven't fallen out, and in fact, I have one lone chin hair that always grows, that still grew.

Eva Sheie (17:38): Old faithful.

Kristen Vengler (17:39): Yeah. Facial hair is still intact.

Eva Sheie (17:43): Oh boy. Okay. Well, when we lose the chin hair, we know we're really in trouble. It's like the bellwether.

Kristen Vengler (17:50): Exactly. Actually, you're going to think I'm really gross, but I do have a little bag of the hair that came out that Friday night in the shower. Part of the reason is, they say that your hair always grows in different, and so I wanted confirmation of what my hair looked like before, and after. And they say sometimes it grows in curly, sometimes it grows in lighter or darker.

Eva Sheie (18:16): I wonder if you can make a request?

Kristen Vengler (18:18): I mean, hey, come on, it's pretty close in there, the follicles are close to the brain so we should be able to work something out. So I have an off week, and then I have my fourth session of the chemo, and then I have two weeks off, and then it starts weekly Taxol. So, I'm three fourths of the way through the tough stuff, which is good.

Eva Sheie (18:44): That is good.

Kristen Vengler (18:45): Mm-hmm (affirmative). I had a friend from high school today, she's so sweet. She sent me my favorite dinner, from Flower Child. And she lives in Oregon, and we hadn't talked in 25 years until recently when I was doing some health coaching with her. And there was flowers sitting on my doorstep and dinner, and it was just like, sweet. She didn't know my day was going to be hard, or maybe she did, maybe she just had a feeling. I don't know, it's just a big warm hug. Love you, Eva.

Eva Sheie (19:14): I love you too. Talk to you soon.

Kristen Vengler (19:20): Yes. You cheered me up.

Eva Sheie (19:21): Oh, good. I'm so glad.

Kristen Vengler (19:22): Yeah, a lot.

Eva Sheie (19:23): Just perfect.

Kristen Vengler (19:24): Thank you for listening too.

Eva Sheie (19:29): 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. T-H-E-A-X-I-S . I-O.