Oct. 7, 2021

Day 13: Why I Cut All My Hair Off 3 Days Before it Fell Out

Day 13: Why I Cut All My Hair Off 3 Days Before it Fell Out

At the end of the day following Kristen’s 2nd chemo treatment, she recalls her dream the previous night and describes how her hair hurts.

Between the first and second chemo treatments, several surprise infections appeared along with disappointment over how quickly her formerly iron-clad immune system failed.

While adjusting to all these strange happenings within her body, she decides to cut her hair before it has a chance to fall out, resulting in the comical realization that with short hair she looks like her son and a surprise boost of self-confidence.

When a deeply meaningful gift from a dear friend (and two-time breast cancer survivor) arrives in the mail, the pink ribbon logo takes on a new and different meaning.

Settling into the treatment routine, Kristen shifts her focus to the future by buying a beautiful new wall-sized garden calendar from Etsy to chronicle the journey that’s about to unfold.

At the end of the day following Kristen’s 2nd chemo treatment, she recalls her dream the previous night and describes how her hair hurts.

Between the first and second chemo treatments, several surprise infections appeared along with disappointment over how quickly her formerly iron-clad immune system failed.

While adjusting to all these strange happenings within her body, she decides to cut her hair before it has a chance to fall out, resulting in the comical realization that with short hair she looks like her son and a surprise boost of self-confidence.

When a deeply meaningful gift from a dear friend (and two-time breast cancer survivor) arrives in the mail, the pink ribbon logo takes on a new and different meaning.

Settling into the treatment routine, Kristen shifts her focus to the future by buying a beautiful new wall-sized garden calendar from Etsy to chronicle the journey that’s about to unfold.


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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.

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 (00:08): This is the story of my friend, Kristen. Last year, Kristen moved from Austin to San Diego, to be near family and start her life over. And just a few months later, she had that terrifying moment in the shower, we all hope we never have. This podcast is about what happens when you have breast cancer, told in real time. Go back to last night. What was on your mind last night when you went to bed?

Kristen (00:36): Oh, I know it was on my mind last night. My head has been hurting like my hair, like, you know when you have a ponytail and it feels like it's pulling. That's what the crown of my head feels like right now, and that's from the chemo. My hair follicles are reacting. And so, when I went to sleep last night, I was thinking, "I just got this haircut, is my hair already going to fall out?". That's really what I was thinking. And it's interesting because, I didn't even get my bag ready for today. I guess I was either in denial I was having chemo, or I was relaxed. I don't know what it was, so I knew what to expect, but I was nervous about my labs.

Eva (01:25): Why do you think you were nervous about them?

Kristen (01:28): Well, earlier this week, or last week I had three infections and it's like strep C. Like you always have that bacteria in your throat. Then it was ear and then it was bladder. And so, I was really upset this week because, not from being sick and not from feeling bad, but as you know, being married to a teacher, our immune systems are like...I mean like Swine flu, like nothing, nothing touches me. And so I've gone 20 years with this fantastic immune system where like, I'm not the girl who gets the flu or the cold. I get the migraine, the allergies, or I tear something in my leg.

Eva (02:13): I was going to say you're the one in the boot.

Kristen (02:16): I'm the one in the boot. That's right, damn it. So I don't get that stuff and this week I got that stuff. And I was very disheartened that my immune system, that has taken me through so much, it was so quickly depleted. And I guess I just kind of feel like, I have to be careful, because of my body's turning on me. You know, what if something else is out there, what does that do to me? And it's not really fear so much as its concern. I don't know what to expect, so that's why I'm worried about my labs.

Eva (02:56): My impression is that, it sounds like you're just, it's more fear of the unknown, and how quick it started.

Kristen (03:03): That was it for me.

Eva (03:07): So you've got up in the dark this morning. What was it like outside?

Kristen (03:12): So when I woke up this morning, it was windy, and rainy. And I had weird dreams about trying to ride my bike. Don't ask me why, to my appointment today. And, like, okay.

Kristen (03:30): Obviously I had some anxiety, because right before I woke up, my dream was about not making it to my chemo, and they kept calling me, and calling me, and calling me. And I was lost, and couldn't figure out how to get there. When I was driving in today, I was thinking about how I had felt the week before, and how I didn't have that feeling of I don't want to go. It wasn't that I was looking forward to it, at least I had a little bit of an idea of what to expect.

Eva (04:02): Okay, tell me about your port. Where is it? Does it hurt? Is it uncomfortable?

Kristen (04:08): Yeah, it's like right next to my armpit, and they put it on the left, because it's the right breast that has a tumor. And there's some reason for that, I don't know exactly what it is. SoAnd iI've only had it in for about three weeks, So it's still healing, and so down here as I touch it, it feels hard. It's about the diameter of a quarter, and the depth of two quarters stacked. I had this put in, it was vascular surgery, and then right here, is a small little catheter that goes into my carotid artery, and then goes down here into my aorta.

Eva (04:49): Wow!

Kristen (04:51): And what they do, is they go in, and they flush it, and it tastes like acetone. Whatever you think acetone would taste like it, it tastes like acetone smells. I know it's very weird, but saline, the saline in here tastes like that.

Eva (05:07): It makes your mouth tastes like something that's so strange.

Kristen (05:10): I know! And, so they put an IV, I guess basically in there, and they flush it to be sure there's no blood clots or anything like that, and then they draw my labs from it. And then they put the tubes on for the infusion center to connect to. I'm just like walking around for hours with tubes hanging out. I haven't gotten it out of my mind, two weeks ago when I was in there for the first time, I said, "how long is the port in?" I said that, they were like, "take it out when you had your breast surgery." And she said, "well, actually a lot of people choose to leave it in because they feel like it's bad luck if you take it out."

Eva (05:47): That's interesting.

Kristen (05:48): I know, I was like, wow! And I was instructed very firmly by the vascular surgeon that no one is to touch this.

Eva (05:58): So other people still take blood from you other ways?

Kristen (06:02): Yeah. Because it's so specialized, and it's in such a prominent place in your body. They don't want to mess it up. It took me a little while to be able to sleep on that side. It's still tender, but I was told today that it looks really good.

Eva (06:20): It'll probably always be a little bit tender, because it's not supposed to be there so.

Kristen (06:24): Well, it's a foreign object in your body. It's called a smart port, so it has some kind of smart technology. And I have a little card that I was supposed to carry around that tells people what it is, and like a serial number, and stuff like that. Kind of like I'm chipped.

Eva (06:41): And then it has a walkie talkie, and they can track you. Like they can turn on, "Find My Friends" and find you.

Kristen (06:48): And, yeah. And, they can look at all my data. That's the port thing that was, I was shocked at how just casual they were about it. Yeah! Get your port put in.

Eva (06:58): It's there to make everything go smoothly. You know?

Kristen (07:02): And, it's also to preserve your other veins, because if you think of how much is going through there, if they're going to access these smaller veins, you're going to tear them and burn them out.

Eva (07:12): So this is kind of a weird question, but when you look around during infusion, does it look like everyone's ports are in, on one side, or the other in the same spot, or do people have ports in other parts of their bodies?

Kristen (07:25): So the only time I really see anything about people's ports, is when I'm in the port area, and there's like three chairs in there, and most people have it in their chest. I will say, I don't know if they still do this or not, but when my mom had chemo for ovarian cancer; now this was in the nineties. So it was a long time ago. Since the ovarian cancer was all in her reproductive area and a teensy bit on her diaphragm, the port was like in her pelvis. And so, the chemo went straight there, and it didn't go into a vein. It just went straight into the abdominal cavity, and so as a result of that, her digestive system was fried.

Eva (08:10): Oh my God.

Kristen (08:11): Yeah. So I don't know that they do that anymore, because that was actually a conversation that I had when they said, they wanted to do chemo first. And I said, I was hoping to avoid chemo, and here's why,

Eva (08:21): Oh, because you were remembering that.

Kristen (08:24): And, so in chemo, I think most people probably have it somewhere up here, because they want to access that big vein. And when I'm in the infusion center, I'm one of those antisocial people that pulls my curtain around, and plus COVID, so about six to seven feet apart from people. But, I know the guy next to me today was getting a three hour bag of chemo. I was like, wow! I thought my 40 minutes, then hour, then 20 minutes was bad.

Eva (08:55): Yeah. Three hours is long. So was there anything different today than the first time or was it pretty much the same routine?

Kristen (09:04): No, today it was very similar. I was surprised at how long it took them to get my chemo bags, because what they do first, is they give you a two anti-nausea shots of medicine in your port. Then they give me a steroid that takes about 40 minutes, and that's handled today.

Eva (09:24): Did you drive yourself today?

Kristen (09:26): No, my friend Jerry took me.

Eva (09:28): Okay.

Kristen (09:29): Yeah. My friends don't let me drive myself. Which is really nice. That's something that no one really told me, but I'm really glad, because when you come out tired, or just kind of feeling a little bit off, and there's a friendly face there, it's awesome.

Eva (09:50): So it sounds like you have a lot of people watching over you right now.

Eva (09:57): What are you doing with yourself between chemo's? How are you filling in the holes?

Kristen (10:04): Good question. Well just saw me with my ice cream.

Eva (10:08): Well, other than eating.

Kristen (10:11): Well so, I work, and there are a few times this past week, and the week before, maybe four days where I was really tired. They're wonderful about it, and that really revitalizes me too. I mean, who doesn't want to play with a one-year-old?

Eva (10:28): I do.

Kristen (10:30): So I do that. When I come home, I take Jack for a long walk, and that usually coincides with sunset. So that's really nice. We're up on a cliff, and so to go down, we have to zigzag, probably about eight minutes, and that means that means I have to zigzag back up eight minutes. And, so depending on my energy level, how far I can zigzag, but we always go, and we can watch it just on the bluff. And, then I have a woman's group that I'm a part of, and we have zoom meetings, and we had the option to attend them every night if we want to. And, then I'm really tired, so I'll take a little power nap, and then just try to relax, and kind of catch up from my day. I try to document each day how I'm feeling, and what was going on that day, so that I have a record of it.

Eva (11:22): A few days ago, you cut off all your hair.

Kristen (11:25): I did!

Eva (11:25): Where did you go, and what was that experience like?

Kristen (11:31): So, I went on Saturday, and I was so excited. I had all these pictures, and I kept sending them to people "which one, which one, which one" and each picture had like three votes. And, I was like, well, that doesn't help me, and so I had an idea. So, I had texted her the ones that I thought would be good. And, I was trying to find things that complemented my face, cause I have kind of a longer face and like an oval face. So, when I got there, it was in one of those little suites. So, there was no one around really. Oh, and ironically, these suites were in the same exact location where I helped my dad open his grocery store in Del Mar.

Eva (12:12): What!

Kristen (12:13): 30 something years ago. Yeah. Yeah. In the Del Mar... Swear.

Eva (12:17): Wow!

Kristen (12:18): I know, so weird. It's called, the "Del Mar Plaza." And, so 35 years ago, I helped my Dad open that store and I was one of the managers there.

Eva (12:26): You got 84 comments on your haircut photo on Facebook.

Kristen (12:30): Isn't that crazy! I don't think I've ever had that many.

Eva (12:34): I know. Isn't that funny? 155 likes, nine wows.

Kristen (12:41): That's awesome. Well, I haven't put it out there. Some of those people know I have cancer, and some of them don't. And, so I'm trying to keep it not sad, kind of an adventure.

Eva (12:53): I think you're doing a great job of it. Nobody that doesn't know already, isn't going to figure it out from this.

Kristen (12:59): So yes, when I went in, I was anxious to see, not anxious, but excited to see where her studio was. And, it was actually where the service deli was before. And, I told her that and she was laughing, but it was the first time I'd been back to that center in 30 years.

Eva (13:14): What a strange experience.

Kristen (13:17): Such a trip, such a trip, because it was a big event in my life to do that. And so, I said, "I just want something that I'm not going to freak out. It doesn't have to be super short, but I don't want to freak out with like a big swirl of hair next to me on the bed when I wake up, or in the shower, or something like that."

Kristen (13:37): And so she was so thorough, she sat and, she looked. She looked at my face and then she looked at my cowlicks, and then she looked at my hairline and she's like, "Hey, I think I know what I want to do." I said, "I totally trust you. I said just do what you think." She didn't really warn me, all of a sudden, I feel this razor cut in the back, and I'm like, so I guess we're doing it.

Kristen (13:58): She was just so good, and what was really interesting is, you know how Brian and I looked very much alike, and he has short hair. I had my glasses off.

Eva (14:07): Oh god, you looked like Brian!

Kristen (14:08): I was sitting there and I was like, "I'm looking more and more like my son", that's kind of weird. What was really weird, is when she showed me the back, I was like, I know that hairline, that's my son's hair line. I have a mole right where he has a mole, that I never knew about it. Isn't that weird? But it was just the weirdest thing, because it was like seeing myself only I hadn't. Because I've never really seen what my hairline looks like. like that. So, she did such a beautiful job, and I was very self-conscious about you know, my eye wrinkles, or like maybe my chin that's not completely taught, or you know, cause I always pictured people who have short hair with these big, beautiful faces, like Halle Berry. And, I mean, I've never considered myself ugly, but I never thought, "I have this beautiful face that can totally pull off a bald head or short hair". And what was really incredible about it was, I got more self-confidence after I did it. And I looked and I was like, "oh, you can see my cheekbones". I wasn't hiding behind anything anymore.

Eva (15:18): It's crazy. You look so much, you didn't look old before, but you look younger.

Kristen (15:23): Isn't that funny?

Eva (15:24): Yeah.

Kristen (15:26): I've had people say that. It's interesting, one of the people on Facebook who doesn't know that I have cancer, she said, it's something like, "it's your personality. Exactly: fierce, and feisty". People who I haven't talked to in years said things. You know just really sweet. And I have to say, I love it, and I may not go back.

Eva (15:49): What was the name of the salon?

Kristen (15:51): Her name is Lael (L.a.e.l) Anne Marie is the name, and she's in Del Mar. She's incredible. Can I tell you what my oncologist said today,

Eva (16:03): Please!

Kristen (16:04): I was leaving and she said, "is it as bad as you thought it was going to be?" And I said, "no." And she smiled, you know, and she said, "because this is as bad as it's going to get." And I was like, what? And she said, "yeah." She said, "you're going to feel more fatigued, but the side effects that you had through the first chemo are going to be about the same through all of it". And I was so relieved.

Eva (16:34): It's not like this giant downhill progression until you're like on death's door?

Kristen (16:39): That's what I thought. Now, I think with the fatigue it is. So I think where people get that is with their immune systems and getting sick because eventually it's going to be compromised completely, and you're going to have to be careful, and the fatigue, I think those are the two things. But I told her, she asked about the symptoms and I said, "well, you didn't tell me to do this, but I did it". And she said, "what?" And "I said, I tried to stay ahead of the symptoms. Kind of like you do when you're on pain meds". And she asked what I did, and I just told her when I got up, I took us Zofran, after eight hours, I took a Zofran and then I took whatever the other anti-nausea is, at night that makes you a little bit drowsy. For the bone pain I took a Claritin, which is odd and weird to me, but it works. But I kept the regimen going so that I didn't get sick.

Eva (17:29): Did she say, oh, what a smart girl you are!

Kristen (17:32): She says, that's awesome. Do it. And so I was relieved to hear that because I didn't have a lot of nausea. Knock on wood. And I understood what the fatigue felt like, and I kind of know now to go to bed a little bit earlier and stuff,

Eva (17:50): California is opened up again.

Kristen (17:51): Yeah. The nail salons are open. That's what I heard about today. So I'm going to have to be a little bit more careful.

Eva (17:57): Yeah. Just put your bubble on. You'll be fine.

Kristen (18:00): I double mask now, with the hospital I did. Say a little prayer that it is the same. Cause that would be good. I'd like to be able to do as much of my normal stuff as I can.

Eva (18:15): Yeah. The more normal stuff you can do the better

Kristen (18:18): That'll make the emotional stuff easier too.

Eva (18:20): Yeah. Getting your nails done. I finally went after, it had probably been years. It was like the greatest hour of my life.

Kristen (18:31): Right.

Eva (18:32): It was just so luxurious. So I told myself I would never go that long again.

Kristen (18:39): I need to get a pedicure badly. And I think with the Taxol, that doesn't happen until March. Your nails are supposed to like get brown and kind of yucky. So

Eva (18:50): Can you get a pedicure before then?

Kristen (18:52): Yes. I'm going this weekend. Definitely.

Eva (18:55): Good. The last thing I just want you to tell me about before we go is... Good friend of ours sent you something really special today. Do you want to just talk about that for a second?

Kristen (19:10): Wow. Yeah. So she told me to look for something and she's basically like an ex mother-in-law, that's still my mom ,who I adore. And she has had breast cancer twice. And both times she avoided having to have a massive surgery or chemo. She had radiation that solved it. So she's been really a cheerleader for me. And when I got home today and this bracelet from Brighton,

Eva (19:42): That's like vintage Brighton.

Kristen (19:43): Yeah, It's like 16 years old, 17 years old, only the second version of a breast cancer thing that they did. And it has, it's a charm that has the breast cancer logo on it, that is in the center of a heart that has little gems in the heart that move. And on the back of it, it says, this is the key, and you didn't know this love heals, is what it says on the bat. And she sent it to me and she has a matching one. The one that she sent me was the one she bought for her mother to wear while she was going through it. And her mom wore it almost every day until she died. And I was very close to Grammy and was there when Grammy had her stroke and the family was out of town and actually my ex at the time, was there coming to the hospital to help.

Kristen (20:32): And it's so special to me because, these are people I would have chosen as my family. When I, I was texting with it with her and she said, this is the biggest gift I can give you to help you heal. And it truly is, I was crying. I don't have things like this in my family, the traditions aren't there. It's just very different. And to have something like this, and it was actually the first thing that I ever, that I have that actually had the breast cancer logo on it. And when I saw it, I was like, "oh yeah, I have breast cancer, huh".

Eva (21:15): That's a symbol that belongs to you now, that didn't before. When's the last time you saw her?

Kristen (21:25): Before I moved, probably 13, 14 months ago. And I know that this is the last thing she wanted to have to give me.

Eva (21:36): I know.

Kristen (21:37): And so when she did, it was both of our ways of knowing that it's okay, it's going to be okay. And she helped me to understand how to tell the girls about it too. And it was a good experience, you know, and they had a good reference point because their grandmother has recovered from breast cancer twice. So they didn't have the experience of someone they love dying. One of them was very excited about my haircut and wants me to get exciting colored wigs and have a whole new look. And the other one was devastated, which I was surprised about. And she put a breast cancer fundraiser on Facebook for her birthday, which I thought was lovely. And it brought us closer because she got to really talk about some of the feelings that she had.

Kristen (22:30): And it was good. You never know how you're going to tell kids that you have cancer, but I made sure that I wasn't texting them, that I was talking with them. So what my hope is like, I'm doing with my nieces, I hope that they both see that there's strength and grace in illness and that it's yours to make of it what you want, within reason. Because what I feel like is I feel like everything's taken care of. You know, I'm not wealthy, I have enough money to live on, but I have good insurance, the doctors are doing their thing, my support group is intact. I just got to go and I just got to stay well, that's it. And if I do those things, chances are I got another 30 years.

Eva (23:19): I can't wait to see what you do after this.

Kristen (23:21): Right? I can't either. You know what I bought and I know you would totally love this. It's coming from England. It's really pretty. It's a huge 2021 wall calendar with every day of 2021 on it. And so I'm color coding, like colored transparent dots for different things. And as I move through, I'm marking off in like my own little pretty way, how far I've gone and I'm trying to make it like a living journal. And that way I can see what's going on. I'm visual. It's the teacher in me too.

Eva (23:57): Yeah, for sure. Do you need some color dots?

Kristen (24:00): I do. Are they transparent?

Eva (24:05): Gold stars.

Kristen (24:06): Gold stars will be my chemo days. On chemo days, I have like a special dinner and a special treat that are waiting for me.

Eva (24:14): Darn right.

Kristen (24:16): Yeah. I love you.

Eva (24:18): I love you too. Thank you for telling your story. Part two.

Eva (24:26): 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@theaccess.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.io.