To help make radiation go a little better, Kristen teams up with guest Jen Delvaux to talk about their radiation experiences and share the little things that made them more comfortable.
To help make radiation go a little better, Kristen teams up with guest Jen Delvaux to talk about their radiation experiences and share the little things that made them more comfortable.
Most women head into radiation not knowing the process or what to expect. Intimidating machines, tattoos, buzzing noises, orders about how to move (or not move) are overwhelming. Taking a backseat to treatment needs are ease and comfort—not that anything about radiation is particularly comfortable. If you’re also recovering from surgery, motion is limited and dressing in ANY clothing is a challenge.
Whether you’re just starting or are in the midst of radiation, this conversation is meant to be a helpful guide to the little things you need to get through it based on real experiences.
Jen Delvaux is the co-host of the podcast Not Today Cancer and author of a new book by the same name titled Not Today Cancer: A Non-Typical Survival Guide for the Girl Who Wants to Thrive, Not Just Survive.
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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.
PROUDLY MADE IN AUSTIN, TEXAS
Special Guest: Jen Delvaux.
Kristen (00:00): Hey, it's Kristen.
Eva (00:02): Hey, it's Eva. We have a little announcement and a request. Way back when Kristen told me she had breast cancer, I had a newborn baby. I had just been laid off from a job that I loved, and I was just getting started building a new business, creating podcasts. My mission at work has always been to help tell patient stories of all kinds. I do that to help others be prepared, be less afraid, and be more informed. But in my past work, I had never spent any time writing or thinking about breast cancer, except for the reconstruction part.
Eva (00:38): And so I asked Kristen if she might be willing to tell her story on a podcast, and I also thought it might make it easier to keep the people who care about her in the loop, without her having to repeat herself all the time. I wanted to help her stay connected to those people through something that I knew would be very difficult. I didn't know how difficult, but I knew it was going to be rough.
Kristen (01:01): It was super helpful because repeating it, I relived the pain every single time. So thank you for thinking about that, Eva. We had no idea where this would lead, but we found out very quickly that women all over the world were listening to the story and that it was helping. Now it's become our mission to help women get through the shock of breast cancer diagnosis and treatment, and help inform their family about what they're going through so they can help them too.
Eva (01:25): While it makes us both really uncomfortable to ask, we have reached the point with this podcast where, if we're going to continue telling this story and helping others, we need your help. All podcasts, including this one, require resources to make the show happen. We have an amazing team of people, who you don't know, who are here producing the show, editing it, and getting it out the door every week. And there are costs involved and it takes time.
Kristen (01:52): The editing is super important, because I say, 'you know' and 'like' so many more times than y'all ever hear. We're asking you today, if you believe in what we're doing and have the means to support the show, there are three simple ways you can do that. One is to simply use the links we post in the show notes. If you're buying something mentioned on the show. We receive a few dollars every time someone uses those links and I promise we'll never talk about anything we haven't actually used and really love. One of my pet peeves, I have actually bought things from links on other stores that are not quality or I never got them in the mail. So, I go through and I vet every single one. I've gone and sought these people out. They didn't come to us.
Eva (02:38): Another way to help out is to donate directly and there's a PayPal link in the show website at breastcancerstoriespodcast.com/donate.
Kristen (02:48): You can make a one time donation or you can set up a recurring donation in any amount, even four cents. See, even 'like' four cents, aren't you annoyed by hearing that?
Eva (02:58): Yes. If you want Kristen to stop saying 'like', we can continue having the funds to pay the editor to cut all the 'you knows' and 'likes'. I never say 'you know', by the way.
Kristen (03:11): You know.
Eva (03:12): You know, because then everyone knows I'm from Minnesota if I say it, so I stamped it out years ago, because I didn't want anyone to think I wasn't a Texan. Anyway.
Kristen (03:24): Yeah. Okay. So, back to our regular scheduled ad.
Eva (03:30): Or commercial. The third way to support the show would be to become an official sponsor of the podcast. If you are part of an organization or a business that would be a good fit. And you think that our audience is an audience that you'd like to reach, we want to hear from you.
Kristen (03:46): Especially, if there's any kind of breast cancer advocacy involved. Advocacy is a part of our future plan and it's really too early to share specifics. But we have noticed there are an awful lot of women whose mammograms are not catching their cancer. So if you have an ice cream company, that'd be cool. I love me some ice cream. Actually... Okay, I just thought of this. We need to call my friend Dan. He lives here in San Diego and he has an ice cream truck. He does ice cream parties and he is moving to Austin with it, so natural fit.
Eva (04:17): I volunteer to vet the product.
Kristen (04:19): I will volunteer you.
Eva (04:23): Would he do an in kind donation?
Kristen (04:25): Totally.
Eva (04:30): Kidding aside.
Kristen (04:31): That aside.
Eva (04:33): Very serious sponsorship request here. If this show has changed your life or helped someone that you care about and you think sponsoring the show is something that you'd like to do, we want to hear from you too. Again, go to the website, breastcancerstoriespodcast.com. You can download our media kit. You can send us a message and you can donate on PayPal directly there. You don't even need to sign up for a PayPal account. From both of us, we appreciate anything and everything you can do to help us continue this effort. We love doing this show. It has changed both of our lives tremendously, and we really want to keep doing it.
Kristen (05:12): Humbly, we found out that it's changing other people's lives as well. I get teared up just talking about that, so thanks so much for listening and thanks so much for your support. Anything is helpful and have a good day y'all.
Eva (05:33): Today on Breast Cancer Stories, we've got a special guest. Kristen and I are both here as usual, but we're going to take a slight departure from what we usually do and bring you the things you need to know to be ready for radiation. I have no idea what those things are, because I have not had radiation, but we have two really special people here to go through that. They both have a little different perspective.
Eva (05:56): So I'm going to our guest, Jen Delvaux. Jen is a health and fitness coach and the founder of Team Empower Nation. In February of last year, 2021, she was diagnosed with breast cancer and although she had enjoyed researching new health hacks prior to her cancer diagnosis, she didn't realize she was doing that for herself, too. Her mission now is to help others take back the power over their diagnosis as well as to thrive during and after treatment. Jen and her husband host the podcast, Not Today Cancer, where they openly talk about their own struggles. Her husband had been diagnosed with brain cancer in 2009. He has recovered. Yes, Jen?
Jen Delvaux (06:40): Yes. Well, I mean, it's an ongoing thing.
Eva (06:44): It's never gone. We actually did learn that this year. Never over. You love to interview people who've gone through breast cancer and thrived, and spoke to Kristen earlier for your own podcast.
Jen Delvaux (06:57): Yes.
Eva (06:57): So, I'll use this opportunity to just say, don't miss that episode of Kristen over on, Not Today Cancer. So I want to ask you first, Jen, you wrote a book. What is the book about and tell us about that?
Jen Delvaux (07:08): First of all, I'm so happy to be here. It was so fun interviewing Kristen. She is amazing. Her story is incredible. So, I'm excited that that's on my show as well. So, because of my husband's diagnosis, he was diagnosed in 2009 with brain cancer. He has a grade four brain cancer. It's progressed over the years. He's had three brain surgeries, radiation and chemo, two rounds of that. He's really a walking miracle and he has taught me so much. It's interesting that for years, I've been this caretaker and Darren and I actually at one point were like, "Let's write a book," and we kind of started it, but stopped for some reason, we just didn't do anything with it, interestingly enough, because we weren't finished with that story yet, I think. When I was diagnosed last year, first of all, I was like, "There's no way."
Jen Delvaux (08:02): I remember when they called me back for a repeat mammogram. I'm like, "There's no way. There's no way." Yes, there is a way for husband and wife to both have cancer and I'm a researcher. When something happens traumatic in my life or crazy, I dive into the research and I come up with a plan of how to get through that. I was like, "Okay, all right." Cancer's in my life for a reason, God is really trying to tell me something. I knew I wanted to do something. There was no question. I didn't know what that was going to look like. I'm not an author. I'm not a writer, but this was on my heart. I really believe that in journaling, what you're going through, is so therapeutic, so I just started writing. Then, I was going to do just a little ebook about it, just helping women get through a diagnosis.
Jen Delvaux (08:51): I was with my girlfriend and she was like, "Why don't you write a book?" And I'm like, "Really? Me? Little me?" Like, imposter syndrome to the max. There's no way I can write a book. I just dove in and it's Not Today Cancer, a non-typical survival guide to thrive through a breast cancer diagnosis, not just survive. I don't call myself a survivor. I know a lot of people do and whatever word you feel resonates with you, that's great. But for me, I didn't want to just survive. I wanted to thrive through it. So, I wrote a book and it's for that girl. I share a little bit of my story and then, it's almost like a guidebook of how to get through it. I've talked without other women. I have their stories in there. It's just, I'm so excited and I can't wait for this book to launch and be available. I'm thinking, it's the beginning of April, it's going to be live.
Kristen (09:41): So exciting.
Jen Delvaux (09:42): Yeah.
Kristen (09:43): Kudos to you for jumping out there and doing that. I can't wait to get it.
Jen Delvaux (09:47): Yeah. It just felt good. I mean, I feel like when you're helping others, it's just everything. It takes it off of you, when you're helping somebody else.
Kristen (09:58): Completely, completely. So I have to ask you real fast when you say that, I'll be answering a message or something like that and I'll be crying. I'm like, "Is that the cancer talking or is it..." And I think it's just so much empathy too, because you know where they're going and you know how their head is rattling, how their heart is hurting.
Jen Delvaux (10:20): Oh, when you were on my show, when you were talking about your doctor and what they said to you and just when you were sitting there as a nanny with the two year olds and just your story. Yes, I was holding back tears. I cry... It's crazy. But I think it's so good, because I used to always be that strong person. I would take everything in. People would say, "How do you get through it?" This was before my diagnosis, when going through all Darren's stuff. They're like, "I don't understand, how do you stay so strong?" I'm like, "I just am, I power through it," but I wasn't releasing those emotions. I was really trying to stay strong and then when my own diagnosis happened, the floodgates opened. All the tears came out and yes, I cry much easier on shows and hearing from other women, like all the things.
Kristen (11:11): You guys have two kids that you were managing cancer through, too.
Jen Delvaux (11:14): Yes.
Kristen (11:15): You guys gotta listen to the Not Today Cancer podcast, because it's beautiful and it's honest and it's raw. If you like our podcast, you're definitely going to love theirs.
Jen Delvaux (11:23): Oh, I so appreciate that.
Eva (11:26): All right. Thanks you guys. Let's get to the topic of the day, which is radiation, and we're going to come back and do things you need for chemo and things you need for surgery. Today we're really just focused on radiation and we'll make sure there's lists and the show notes of all the things that we cover today. So, don't worry about writing them down. They're all going to be there for you. I wonder if I could just suggest starting with just a quick background. Would each of you just quickly set the scene for what your first radiation appointment looked like?
Jen Delvaux (12:00): The fear of this was unbelievable. I remember just that first experience, because again it's 2021. So it was still really the beginning of COVID. So, I went to those appointments alone. I will tell you, one thing that helped is I would listen to... I got a book and I listened to that on the way there, just to take my mind off what was going to happen. And then when I got there, I had a little locker, so I'd go to my locker. I put on my little robe and I went into the little waiting room where you feel like you're going back for a massage, but you're definitely not. I remember when they called my name and I was walking down the hallway, I was almost having an out of body experience. I can't believe I'm about to do this. I had been to so many appointments with Darren and I'm like, "I cannot believe that this is happening to me right now."
Jen Delvaux (12:57): I walk down the hallway, I go into my room and I look at my machine and my machine has lashes, eyes and a little bow. I'm like, "She's like my girl," because I wear lashes and I'm not kidding you. That did make me feel better. I have a whole routine that I do, somebody actually shared with me before I went. I would pick somebody each day to pray for. Again, it took it off of me and I would lay there as they're positioning me, because you know, Kristen, you just have to kind of lay their dead weight and they move you around. As that was happening, I was praying for somebody. Then for me, my breast cancer is left-sided. So when you have left-sided breast cancer, it's right above your heart. So, you have to get your heart out of the way of the radiation beam.
Jen Delvaux (13:50): You have to hold your breath. I recommend anybody that's going through it, work on that at home first. Time how long you can hold your breath, because then it's going to make you feel better and not so fearful when you're going through it. So, I knew how many seconds I could hold my breath, and so I just held my breath. When it was all finished, the actual radiation itself takes probably six minutes, maybe seven. The positioning takes a little bit longer, maybe 10, and then you're out of there. I got to my car and I was like, "I am so freaking badass. Like I cannot believe I just crushed that." That was how I felt. How did you feel?
Kristen (14:30): Wow. So you had the total spa radiation experience if you-
Jen Delvaux (14:33): Yes.
Kristen (14:34): Okay. Two words that don't go together. Spa and radiation, ever. So mine was at the MD Anderson Cancer Center here and the machines were so intimidating. I'll just say that first off. No lashes, no bows, no anything. Those who had been listening to the podcast, know how out of my mind afraid I was. I was coming out of this place where, literally for just weeks there had been nothing in my body poisoning it, or no residual meds from surgery or anything like that. So I was like a three year old throwing a fit, because I didn't get ice cream because I had to go. And-
Jen Delvaux (15:17): Were you more scared for this, than anything else?
Kristen (15:19): I was.
Jen Delvaux (15:20): Wow. Okay, that's interesting, because I think I would've been more scared for chemo.
Kristen (15:25): I don't think I had time to get scared, Jen.
Jen Delvaux (15:27): Oh, okay.
Kristen (15:28): I was scared when I was there, but I think my body was so tired also. Felt like I'd been in a boxing ring for eight months before I got to radiation. To me, I had heard so much about the side effects, which there definitely are, of the hormone blockers that I just saw it almost as like, "Okay, the rest of my life is going to be really hard and the radiation signals the beginning of it." And so, that's where I had to do a lot of work on myself and had to really dig deep into what the positives were about it. Like you said, you would pray for somebody every day and on your way there, you would listen to a book. I would sit in the parking lot and there's an app, Jigsaw Puzzle, and I would sit there and do the Jigsaw Puzzle.
Kristen (16:17): I would go in at the very last minute and I would put it off. Again, I was throwing like a temper tantrum, inside myself, about it. So, getting there was a lot of tears. Every day that I would make the turn into the parking lot, I had to say out loud, "Turn the wheel," because otherwise I would go straight and go home. It was very weird too, because I was set up to believe that radiation's the easy part of cancer treatment, because everybody says, "Oh, it's a walk in the park, if you've done chemo."
Jen Delvaux (16:53): That's kind of my feeling, that's interesting that... I mean, everybody's going to have their own experience, so it's interesting to hear that from you.
Kristen (17:00): Yeah. I was alone too, like you, right. Basically, it was a similar experience, but mine was about 45 minutes long, because I was told it was going to be 15 minutes, but mine was on the right. It was so interesting to hear. I had no idea how they managed it on the left with your heart on that side. So the breathing, I think that's such a great tip. I had no idea.
Jen Delvaux (17:20): Yeah.
Kristen (17:20): But, they did basically from the center of my chest where my diaphragm was, all the way up to my neck, underneath my arm and almost to my back. It was this huge quadrant and they had very specific places they were going, because my lymph nodes were so deep, they had to get it from all these different angles.
Jen Delvaux (17:42): Was it in your lymph nodes? Your cancer?
Kristen (17:45): Oh yeah. I had 11 lymph nodes taken out and one of those were cancerous, which is best case scenario for that.
Jen Delvaux (17:52): Yeah. What's so interesting is my lymph node, I think they removed five and one had cancer, as well. What they said, because it was only one they considered that negative. That's one of the reasons I didn't do chemo and even though my oncotype score was a little bit higher.
Kristen (18:11): Interesting.
Jen Delvaux (18:12): Did you do the oncotype?
Kristen (18:13): No, they never did the oncotype, which I'm still curious, I asked about it afterwards and they said, "Well, you're done with chemo, so you kind of don't need it." I'm surprised in all my digging, I hadn't asked about that before. So they did biopsies on lymph nodes beforehand, but they didn't know that I had lymph node involvement until my mastectomy.
Jen Delvaux (18:31): Okay.
Kristen (18:33): I think they just, because of my staging and my age and the whole algorithm, I guess they just gave it all to me. But the radiation was, because of the lymph node involvement and also because of the skin involvement that I had. I think there's a correlation between the chest wall cancer recurrence and skin involvement. So even though they'd taken all the cancer off, they were doing the whole chest wall. It was the whole thing.
Jen Delvaux (18:58): Wow.
Kristen (19:00): There were several different positionings that they did.
Jen Delvaux (19:03): Wow.
Kristen (19:04): Yeah.
Jen Delvaux (19:05): I can understand why that would be hard. I think because mine was so quick that, it made it doable.
Kristen (19:13): Absolutely. The last week they did something called the boost, which was where they just did the scar. That was quick, because it was one area.
Jen Delvaux (19:22): Yeah, I did the boost, too.
Kristen (19:24): Yeah. How many weeks did you do?
Jen Delvaux (19:26): Three and a half maybe, just about four weeks.
Kristen (19:29): And that doesn't sound like so much until you hear it's every damn day of the week.
Jen Delvaux (19:34): Right.
Kristen (19:37): Going to chemo is once a week, or once every other week, depending on the chemo. But going every day was like going to lunch detention every single day.
Jen Delvaux (19:48): Yeah.
Kristen (19:48): And knowing the bully was going to get ya.
Jen Delvaux (19:51): I know. I made sure to schedule mine first thing in the morning. I wanted to be the first one. I'm like, get me in first thing, because I will tell you this. I know this from experience with Darren, because his was at two o'clock in the afternoon. Sometimes you don't have an opportunity to really pick your time. But if you are first thing in the morning, most likely yours is not going to be postponed or they're not dealing with a machine that broke down or somebody arriving late. So, typically you get right in. And then I felt like I always had the whole day to rest if I needed it. When I would leave there... I have a home gym. I would make myself go down to the gym and whether I laid there on the mat and did meditation for 30 minutes or yoga or stretching, or if I worked out, I did something.
Jen Delvaux (20:38): Then I gave myself grace the rest of the day, if I just laid on the couch, because I truly thought... Because you hear. For those that are listening, know that, what my experience and Kristen's experiences are, could be completely different than what yours is. Everybody is different. I've heard all across the board. I thought I was going to power through it, because I'm in health and fitness but it knocked me down. I was exhausted pretty quickly after. In fact, I don't know if you had this, but my left breast after that first day, the first day was swollen and red and like angry.
Kristen (21:17): Oh yeah, absolutely.
Jen Delvaux (21:20): She was like, what are you doing?
Kristen (21:22): Yeah. Well my right one was always angry, because I had that big old expander in there. But, yeah. It's funny because I love that you said that every experience is different, because I was going at the end of the day. I was going on my way home from work. I did that by design, because lucky enough to be in San Diego and lucky enough that my MD Anderson was in La Jolla. My route home, I took the coast. For those of you who know Torrey Pines, you come around a corner and it's, the whole world-
Jen Delvaux (21:54): The most breathtaking thing ever.
Kristen (21:57): Ever. I drove very, very slowly. Once in a while, if there was a parking spot I could see and I wasn't too tired, I would grab my dog, Jack and we would go for a beach walk.
Jen Delvaux (22:08): Amazing.
Kristen (22:08): Because, they told me the best thing you can do is to exercise even five, 10 minutes afterwards, because this fatigue is real.
Jen Delvaux (22:16): I know.
Kristen (22:16): It's a thing. For those who are dealing with radiation, please don't be afraid by what I just said. I'm the anomaly with the 45 minute thing.
Jen Delvaux (22:27): You really are.
Kristen (22:28): I really am.
Jen Delvaux (22:29): I've never heard that.
Kristen (22:30): Yeah.
Jen Delvaux (22:30): That's not a normal thing, but I mean, it's good to hear because who knows, it's all a factor of where you are and what stage and all the things.
Kristen (22:40): Yeah, absolutely. I had a little barcode where I would put it underneath. I was at the grocery register and then I would put it underneath the little infrared thing and my name would come up and then I would go back.
Jen Delvaux (22:53): No, but I have tattoos.
Kristen (22:55): Where are yours?
Jen Delvaux (22:56): I have one in the middle of my breast, on either side. Just so, they'd line me up.
Kristen (23:01): Where they would line up, yeah. So I have those too.
Jen Delvaux (23:03): Yeah. Little dots.
Kristen (23:05): I had them in the same places as you, but they added a couple, for fun. One was where my diaphragm was and then one was also at the top of my right breast. It's really fascinating, the way that they do it. I will say that I felt more like... And this is not for any lack of care that everybody had. It was the procedure. I felt more a piece of meat or like, they were in there doing a very precise procedure.
Jen Delvaux (23:34): It's an important job. It's an important job. And you are right. I remember... I know exactly what you're saying because I like to make light of things to make me feel more comfortable. There's no small talk, because they're trying to position you exactly as you need to be. There's four of them working on you, talking about you, as if you're not there.
Kristen (23:56): Absolutely. Yeah, absolutely.
Jen Delvaux (23:58): You're just supposed to lay there literally dead weight. It was funny, and you probably felt this too, every single day, it's the exact same. They have to do it the same way. I knew, I'd be like, "Well they don't have me positioned right, yet." They're going to have to mess around. You just know, but they don't want you to do anything.
Kristen (24:15): No. They don't want you to help. They don't want you to do anything.
Jen Delvaux (24:18): Yeah.
Kristen (24:18): Then, having your arms above your head, right.
Jen Delvaux (24:21): Oh my gosh.
Kristen (24:22): Pull onto the handles. How lovely is that? Just totally exposed to the world.
Jen Delvaux (24:26): Totally exposed to the world from the waist up like, "Here I am."
Kristen (24:30): Yes.
Jen Delvaux (24:30): I know.
Kristen (24:31): That had something that was called a bolus day, that was every other day where they put... It was like a piece of rubber or plastic and that had different depths. I think, what it did, is it kind of magnified for them, the radiation in certain spots. Kind of nice, because it was warmer.
Jen Delvaux (24:49): That's the other thing, it's so dang cold. It's freezing.
Kristen (24:52): Yeah.
Eva (24:54): So what do you wear to radiation?
Kristen (24:57): I'll let you go, Jen. Besides, your bougie robe that I'm jealous of.
Jen Delvaux (25:03): I had, for me, it was the lumpectomy first, which was kind of underneath my left breast. So, sometimes women want the support. They want their breasts held in. I was not wanting that. I wanted loose fitting bras. So literally, I just wore the knix bra, but I had to take everything off and then put their little pink top on, and then my robe. The top that ties in the front?
Kristen (25:32): Your modified crop top.
Jen Delvaux (25:34): Yeah. My beautiful modified crop top in pink.
Eva (25:37): Just, in general, do they give you a hospital gown or some kind of gown to wear, while you're there?
Jen Delvaux (25:43): Yeah. So, it's one of the hospital gowns, but it's just the top half. So it's just for your shirts.
Kristen (25:49): So with me, they gave me... It was like the opposite of the crop top. It was two gowns they told you to put on. You had put on one with the front open and one with the back open, to walk into the gown room. I learned very quickly that I didn't have to wear a gown, if I walked in with something I could take, like spaghetti straps or a bralette like you're talking about. I had the AnaOno Leslie, and you could take it down and put the bra in your tank top, down at your waist. So I could walk in there with my leggings on and just strip down by pushing all of that stuff down.
Jen Delvaux (26:32): That's awesome.
Kristen (26:33): Because I had expanders, I really didn't want any kind of anything on there. Like you're talking about with surgery, but there's another one that's called the Rora, that's in AnaOno, that is a front closure. So it had the little hooks on the front. The key was being able to either pull it all the way down to your waist or to be able to open it all the way up. I was just really... It was my mind game to not put the gown on, because every time I put the gown on, I was like, "You're sick, you're having an MRI." You're having a this, you're having a that. That was just where my mind went.
Kristen (27:12): Again, it was like saying prayers. I did mantras and prayers and would close my eyes and just, that's all I could do to just leave myself, while it was happening. Not doing the gown was another one of the little mind games I played.
Eva (27:28): This is the first time you've mentioned AnaOno by name, on this episode anyway. Can you spell it and tell us, just briefly, what AnaOno is?
Kristen (27:37): Yes. I always wonder if I'm pronouncing it right. It's A-N-A-O-N-O. The founder, her first name is Dana and then her last name starts with D-O-N-O. So I'm hoping that I'm saying it right. Dana was diagnosed with breast cancer in her twenties and really hated the front B uncomfortable things that you had to choose from, when you had a mastectomy, when you had a lumpectomy, whatever. She designed a lingerie loungewear company that kind of fits, it's made for people who have any of those situations or none of those situations. So I found it because my cousin sent me a robe for my surgery, my mastectomy, and it had a little belt where you could put the drains in. I treated myself recently to the lounge pants and the lounge pants have a little pocket in your leggings for your key or whatever, but it's a little bit bigger for the drains, and the fabric on this stuff is to die for. Super soft.
Jen Delvaux (28:49): Oh, it looks so nice. That's such a good thing to know about.
Kristen (28:53): The other thing too is that, in most states right now, I think they have a program. It's an insurance program. I was able to get six bras free with my insurance, because I'd met my deductible and my out of pocket. Yeah. I just had to have my surgeon write prescriptions for them and I think this year I just reset, because of the calendar year. I think I paid $3.22.
Jen Delvaux (29:17): There's a lot of variables involved of which bras going to work for you and what kind of pressure you like. So, because I did buy a few in the beginning that just, even though they were cotton and they were really fitting and they snapped in the front, it's still underneath my breast. The one that I have is that goes right to my rib cage, to the bottom of my rib. So it's a little bit longer. It's like a half tank top.
Kristen (29:42): Perfect.
Jen Delvaux (29:43): That is looser fitting.
Kristen (29:44): Everybody's different in what they want. Like now, I need some compression. This isn't about radiation, but I have one on that is a front hook. The other thing is that once you have some radiation under your belt... I mean I slept in loose, loose white T-shirts. I didn't want anything touching me. They had me put Aquaphor on at night, just slather it.
Jen Delvaux (30:05): Yeah.
Kristen (30:06): So I had old white T-shirts that were super soft, that it was okay if it got kind of greasy.
Jen Delvaux (30:13): Yeah. I do remember my breasts in the middle, what drove me crazy. What I would do is I used several different one. I'm like, "I want to cover all bases." So, it was the calend... How do you say it?
Kristen (30:28): Calendula.
Jen Delvaux (30:28): Calendula. I had the calendula homeopathic one, of course. Then I got My Girls skincare. So if you go to Mygirlsskincare.com, she's also somebody who went through radiation. So, this was formulated specifically for radiation. My appointments were in the morning and you can't have anything on your skin prior to your radiation, but then immediately after, in my changing room, I would put an ointment all over, under my arm, in the whole area. Then I would do that at least three more times throughout the day, sometimes four. The only thing that I noticed that was happening was I was getting little bumps between my breasts and it was itching, driving me crazy. That's when they had me put some ointment onto, I think it was a prescription one for a little bit. I can't remember what it was.
Kristen (31:16): Silvadene?
Jen Delvaux (31:18): Yeah, maybe that was it. But man, that is what drove me crazy, was the itching.
Kristen (31:22): Oh.
Jen Delvaux (31:22): Completely. You had that too?
Kristen (31:24): Yes, completely. I had it in the center. I remember Eva was looking, she's like, "Oh my gosh. That's bad road rash."
Jen Delvaux (31:32): Yeah. Looks like welts, almost.
Kristen (31:34): Yes. Yes. So you knew it was probably blisters, so you sure didn't want to scratch it.
Jen Delvaux (31:39): Right.
Kristen (31:39): My radiation oncologist, she suggested something called Miaderm. Miaderm made something that... One of the Miaderm's has lidocaine in it. So I started using that when it would itch.
Jen Delvaux (31:52): Well, what else I used was Aloe vera, real Aloe vera. I think it was a little bit expensive, but I got it online because it was real. When it got really itchy, I did that too. I think that really helped me with the healing part of it.
Kristen (32:06): That's awesome. What did your radiation look like? Did it get really raw or anything?
Jen Delvaux (32:12): Honestly, not too bad. I have olive skin and I tan pretty easily. I don't burn, typically. So it definitely is darker and it looked bruised. I still have a spot when they went back in and did that boost.
Kristen (32:25): Mm-hmm.
Jen Delvaux (32:26): That's still there a little bit. Like I still see some discoloration and gosh, it's been almost a year and my breast still looks totally different on that side too.
Kristen (32:34): Isn't it weird? It"s so weird.
Jen Delvaux (32:36): This one I'm like, "Hi!" This one, the nipple goes downward. I don't even know what it's doing. This one's normal.
Kristen (32:44): Yeah. That was the reason I had that big old expander on the one side, it was literally a D-cup on one side and maybe a B. Then, by the time I had my exchange surgery, the left one was way down, two inches down. Because of the radiation, the right side had pulled up and was very, very tight. That's what my plastic surgeon was telling me.
Jen Delvaux (33:06): The one that you had radiated, pulled up?
Kristen (33:08): Yep.
Jen Delvaux (33:09): So did mine. My left breast is so much higher than my right.
Kristen (33:14): It's the radiation.
Jen Delvaux (33:15): Why?
Kristen (33:16): It has to do with what the radiation does to the skin. So, my expanders were over the pec muscle and I was surprised by that. But when we did our interview with Dr. Pacella, he said, "If I would've put it underneath your pec muscle, it would've been so much more painful, because the radiation forces that to contract." And so it was 30 sessions, 25 and five boosts.
Jen Delvaux (33:39): Wow.
Kristen (33:40): It was that last week or two that my skin continued to bake, to where... I wasn't really pro a lot of pain medicine, but they gave me the same pain medicine they did after I had my mastectomy.
Jen Delvaux (33:51): Wow, okay.
Kristen (33:53): Because, I could not sleep. If I was to go on my side, any movement of the skin, I was in tears.
Jen Delvaux (33:59): Oh my gosh.
Kristen (34:01): So, what I did is I did very similar to you after the treatment, I would put on the Miaderm and it's similar to the calendula. They had me take a picture when they drew on me for the test thing, so that I could see where to go with all of the lotion. Did they have you do any kind of skin prep before you went to radiation? Because, I've heard a lot of people who were like, they prepare their skin with Miaderm or Aquaphor or something, beforehand. I don't know if that helps or not.
Jen Delvaux (34:33): They did. Somebody had suggested, and it was every single day taking six teabags and you brew it and you cool it. Then you put actual teabags, I think, on your breast. I never did it, but I did hear that, that works too.
Kristen (34:49): Okay. You were talking about the mind things, the spiritual things, to go through it and to get through it. I continued using all of the stuff until all the burns and stuff were gone. Didn't you? All the creams and stuff?
Jen Delvaux (35:05): Oh yeah. For a long time, especially the Aloe vera. They were with me for a while, but definitely mindset and prayer and meditation and just getting outside when you can and doing things for yourself and being okay with saying no. Taking things off your plate.
Jen Delvaux (35:24): I remember I would be invited to something during radiation. When it was a couple weeks away, I was like, "Yeah, yeah, yeah. Great. I'd love to." I would feel so bad, but you have to do what is right for you. And it was so sweet. This girl said to me, "Jen, you're healing right now. There's going to be plenty of time for that. You focus on just taking care of you. Do not worry." Like you and I talked about earlier, you and I don't like to be... We're caretakers, right? We like to help people. We like to lift people up. Being that sick person, I always thought like, "I don't want to be that." But you also got to give yourself grace and take some things off your plate.
Kristen (36:04): Completely. I'm so glad you said that. I know that the last thing that I wanted to do was to find a parking spot and get out and walk and wrangle, my cute little dog up and down while he wanted to chat with everybody on the beach. It's like, once you start your workout, you feel good. I had every reason to not, and doing it really did save me. Your mindset is everything. When it's not good, your self talk and your prayer and your soul work is the only way that I can really say it. And everybody has their different perception of their spirituality and their God and all of that. You have to find yours and you have to really... Even if it's distracting yourself with a stupid Jigsaw Puzzle for 10 minutes beforehand. I love you sitting there deciding that you're going to say a prayer for someone.
Jen Delvaux (37:03): Another little add on to that is, tell that person, because then they're thinking about you, when you're going. Say, "Today, Hey, I pick a person each day. You're my person."
Kristen (37:13): I love it.
Jen Delvaux (37:14): "Just so you know, I'll be saying a prayer for you during my radiation." Then they're like, "Ooh, I'll pray for her too while she's..." You know what I mean? It's just powerful and it takes it off of you.
Kristen (37:25): What you said sparked something in me when you're having a hard time thinking of someone else, whether it's a gratitude list or just texting and saying, "I'm thinking of you, I love you." Or just getting out of yourself, it's amazing what it does for you and your heart and your mindset and to get you through that next 10 minutes. I almost sound like I'm being selfish with my gratitude and my wishes for other people, but it really does help you to get out of yourself and especially being a caretaker, that's our go to, right. Is to try to figure something out for somebody else.
Kristen (38:03): Not to be a downer. I remember being in that gown room and there was this lady who was probably 20 years older than me. She'd say, "What are you here for>" kind of thing. And I'd say, "Breast cancer." "Oh yeah. I went through that 24 years ago and I'm here because I have metastasis in my spine. So they're just giving me a couple shots," I'm like, okay. So I know you're trying to relate to me and you're trying to have empathy, but I just got in here and walked in this room.
Kristen (38:36): Those people who are going through this stuff, realize people don't mean anything by that. They're trying to identify with you. That's tough stuff right there.
Jen Delvaux (38:45): Yeah. I've heard that many times and I've... I'm big on social media. I had to make sure to tell people, because people want to relate. They want to say, hey, I know what you're going through because of, whatever. And I'm, "Listen, no poor Jenny, no sadness." Don't tell me about your aunt or cousin or best friend that died of this. Only positivity, please. Totally.
Jen Delvaux (39:13): And I had to say that and sometimes people would forget and I would still get messages like that. I feel like you do have to protect your mind. The things that we have to do, the medications that we have to take, the side effects from all the things are hard. It's hard to look at and I don't think you always need to know them all. I don't look at everything and the way you look at your drugs and what you're doing, the chemo and the radiation, is important too. The other thing, instead of thinking about the radiation as possibly hurting me and hurting my other organs, I would pray that God's hands were on me, protecting me. Then I would literally have the cancer cells popping as that radiation treatment was going. I was imagining the cancer cells popping, any that were left over.
Kristen (40:06): I love that. I was imagining if that's what it was doing to my skin, what must it be doing to these little cancer cells?
Jen Delvaux (40:13): Yes.
Eva (40:15): If somebody comes up to you and says, "I'm about to start radiation, what do I need to know?" What is the one thing that you would tell them?
Kristen (40:25): Wow.
Jen Delvaux (40:27): So many things, but I'm trying to think of that one. I really think the most important thing is your mindset in protecting your mind and praying and believing. I mean, there's all the other things that you're going to learn about from the doctors and the skincare and the ointments and all that we've talked about so far in this show. But again, I think going back to protecting your mind and believing what you're doing, is getting rid of this.
Kristen (40:54): I would agree. I would say also treat yourself like a princess through this, in any and every way. Take help, also. 200% on everything you just said, Jenny, but I think just protecting yourself and letting yourself be who you are. Don't look at it as weeks. Look at it as, it's Monday, it's Tuesday. Just chunk it.
Jen Delvaux (41:21): Totally agree. Day by day, minute by minute.
Kristen (41:24): Completely. Yet it will pass. I hated it when people said, "Oh, you're going to get through this." Well, you're not going through it. As somebody who's been through it, I can say it will pass, but it doesn't feel like it in the moment, and reach out to those people and to those resources. We're all here and we've all been through it. But the biggest thing is, treat yourself like a princess in every way, shape and form. That means taking care of your heart and your mind and your spirituality and your God.
Jen Delvaux (41:55): Yeah. Kristen, that's so good. I love that so much.
Eva (41:59): I've been practicing. I always try to come up with a system for everything. What should my thing be if somebody's going through something hard, no matter what it is. I want to tell you guys what it is and see if it works. "I'm so sorry that's happening to you. Can I bring you a meal?" Does that work for anything and everything?
Jen Delvaux (42:19): Are you meaning how somebody can help somebody else?
Eva (42:22): Yeah. I think just, a lot of our audience is people who care about somebody who's going through cancer and I'm really obsessed about what to say. Then we sort of also kind of laugh about these things that everybody says. I don't want to just walk away without offering some kind of actionable, something useful.
Jen Delvaux (42:47): I'll tell you, with my personality. If anybody asked me if they could bring me food, I would immediately say no, but my family and friends know me all too well, and they just did it. So of course, find out the person's... Sometimes people change their nutrition after going through a diagnosis, where there's certain dietary things. Find out before you do that, but it's usually for the family as well, just to help in that way. I recommend, I think the most important thing is just saying, "I'm so sorry you're going through this. And I love you. And I'm here to listen." Without advice.
Kristen (43:22): Absolutely.
Jen Delvaux (43:24): People want to give you advice and they don't need to, we don't need advice unless we ask for it. But it's just to talk through it and we don't need you to give us an answer. I think just helping, because I know for me too, if I ask somebody, "What can I do? How can I help?" "I'm good. I'm good." Most people will say that. So just figuring out something to do without even asking. Just saying, "I'm sorry, I love you. I'm here." I think checking in too, people forget. They'll say one thing and then they kind of go, "Well, I checked in with her." If it's a dear friend, keep checking in.
Eva (44:00): Set a reminder on your phone.
Kristen (44:02): Yeah, seriously.
Eva (44:04): My mom checks in with me at the same time every week. That's how I-
Kristen (44:06): How cute is that? Well, Eva, you did the perfect thing and didn't even know it. It was after my surgery. You just sent comfort groceries. I mean, it was healthy things. It was fruits, it was vegetables. It was a-
Eva (44:18): Not that healthy, Kristen.
Kristen (44:20): Well, you've sent some fruits and vegetables, but it was like a pop pie. I had people helping me after my surgery. I didn't have my family there, but I had people helping me and so same, they were like, "Oh wow, we can just pop this in the toaster oven. It'll be great." I would say when people ask me what they can do, that gives me another thing to think about. Just doing something and I know flowers are so cliche, but I never get tired of flowers.
Jen Delvaux (44:48): Oh, it was great.
Kristen (44:51): Like Jen said, just saying, "I love you and I'm here. I so don't get what you're going through, but I am here. No matter what you need, 24/7. Call me anytime, just to cry." Because, I always think nobody wants to hear from me unless things are going well. Having that permission is really important and knowing that you're there unconditionally, is super important.
Eva (45:19): Thank you, Jen.
Jen Delvaux (45:21): Absolutely. Yeah.
Eva (45:22): You both. This has been great. Jen, for our audience, would you just give us the rundown on where we can find you?
Jen Delvaux (45:31): Absolutely. Well, first of all, thank you so much for having me. It's been so fun. I loved having Kristen on my show. We definitely have to do this again sometime. My Instagram is my name, Jen Delvaux. That's where I mostly hang out. I have a website too, jendelvaux.com. Then I have my book launching, hopefully soon. I don't know when this is going to air, but maybe even by the time this is aired and it will be in the show notes, but it's soon. And that is, Not Today Cancer.
Eva (45:59): Can't wait.
Kristen (46:00): Been so much fun. I loved spending the morning with you.
Jen Delvaux (46:04): So fun.
Eva (46:07): Thanks for listening to Breast Cancer Stories. Our mission is to help women get through the shock of breast cancer, diagnosis and treatment. If you or someone you know is dealing with breast cancer, you know how hard it is, and how many unpleasant surprises there are. We are humbled by how many of you have written to us to share how much this podcast has helped. If you believe in what we are doing and you have the means to support the show, help us keep it going with a one-time or recurring donation, by going to breastcancerstoriespodcast.com/donate. This link is also in your show notes.
Eva (46:43): We appreciate anything and everything you can do to help us continue this effort to help other women who may not have anywhere else to turn. If you're facing a breast cancer diagnosis and want to tell your story on the podcast or just want to reach out and send us a message, send an email to email@example.com. Follow us on Instagram at Breast Cancer Stories Podcast. I'm Eva Sheie, your host and executive producer. Production support comes from Mary Ellen Clarkson and our engineer is Daniel Croeser. Breast Cancer Stories is a production of The Axis. the axis.io.
Author / Podcaster / Founder / Coach
Jen Delvaux is a health and fitness coach and founder of Team EmpowerNation. In February 2021 she was diagnosed with breast cancer. She always enjoyed researching new health hacks prior to her cancer diagnosis, but now it's her mission to help others take back the power over their diagnosis and thrive during and after treatment.
Along with her husband she hosts the podcast show [Not Today Cancer,](https://podcasts.apple.com/us/podcast/not-today-cancer/id1436449587) where they talk openly and honestly about their own struggles -- her husband was diagnosed with brain cancer in 2009 -- and how they get through it in a positive way. She interviews other breast cancer thrivers and experts to help in the healing process after a diagnosis.
Jen is the author of the book [Not Today Cancer - A non-typical survival guide for the girls who wants to thrive, not just survive.](https://amzn.to/3KzYXBi)