Episode 61: Navigating Cancer w/ Grit & Humor: Jen Tober's Uplifting Journey Through Breast Cancer & Beyond

Ever wondered how sheer grit & humor can help one navigate the stormy seas of cancer diagnosis and treatment? Join us as we welcome Jen Tober, a tenacious breast cancer survivor & a dedicated “empty nesting” mom of 3 from Washington DC. I met Jen through our friend Amy Banocy, breast cancer survivor and author of  Baring it All My Breast Cancer Fuckery  Jen's story is a compelling testament to resilience, as she recounts her journey through breast cancer amidst the chaos of a global pandemic. From her pre-diagnosis life as a recovering imperfect perfectionist to the unexpected discovery of cancer during a routine medical health check, Jen shares how her personality traits and unwavering support from the breast cancer community helped her face the challenges head on.

Through personal anecdotes filled with both heart & humor, Jen opens up about her experiences w/ bilateral mastectomy & the surprising role of a life-size Lenny Kravitz cutout in her recovery process. The importance of support networks shared experiences, & the power of laughter become evident as she navigates the emotional and physical hurdles of treatment. We also delve into the transformative experience of 3D nipple & areola tattoos, exploring both the emotional impact & the legal intricacies of insurance coverage for these restorative procedures. Innovative solutions like decorative tattoos & Pink Perfect nipple prosthetics are discussed, providing listeners with a variety of options for post-surgery aesthetics.
Jen Tober on Instagram 

Beyond Mastectomy on Instagram 

Total Health Assessment 

Jen Tober on Facebook

Pink Perfect Prosthetic Nipples on IG  Use Code: PP25 for $25 off from Jen

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I am not a doctor and not all information in this podcast comes from qualified healthcare providers, therefore may not constitute medical advice. For personalized medical advice, you should reach out to one of the qualified healthcare providers interviewed on this podcast and/or seek medical advice from your own providers .

Transcript

Speaker 1: 0:00

Hello friends, welcome back to the Test those Breasts podcast. I am your host, jamie Vaughn. I'm a retired teacher of 20 years and a breast cancer thriver turned staunch, unapologetic, loud supporter and advocate for others, bringing education and awareness through a myriad of medical experts, therapists, caregivers and other survivors. A breast cancer diagnosis is incredibly overwhelming, with the mounds of information out there, and other survivors A breast cancer diagnosis is incredibly overwhelming, with the mounds of information out there, especially on Dr Google. I get it. I'm not a doctor and I know how important it is to uncover accurate information, which is my ongoing mission through my nonprofit. The podcast includes personal stories and opinions from breast cancer survivors and professional physicians, providing the most up-to-date information. At the time of recording Evidence, research and practices are always changing, so please check the date of the recording and always refer to your medical professionals for the most up-to-date information. I hope you find this podcast a source of inspiration and support from my guests. Their contact information is in the show notes, so please feel free to reach out to them. We have an enormous breast cancer community ready to support you in so many ways.

Speaker 1: 1:16

Now let's listen to the next episode of Test those Breasts. Well, hey, friends, welcome back to this episode of Test those Breasts. I am your host, jamie Vaughn, and today I am super excited to have my new friend, jen Tober, on my show. Jen and I actually met through another breast cancer friend back east. I'm on the West Coast, so I get to meet friends from all over the country and really all over the world, and Jen just happens to be someone that I really had a good connection with. We've had several conversations together and we're just kind of like sisters from another mister, I would say, based on what we've talked about.

Speaker 1: 1:56

Anyway, so Jen lives in the Washington DC area and is a divorced mom to three adult children. Her outlook on life has always been as long as we have our health, everything else will fall into place. Once her kids graduated college, she was excited to focus on herself and enjoy the newfound freedoms of being an empty nester. Same here, jen. Enter the pandemic and a breast cancer diagnosis. Yay. Going through diagnoses, surgeries, surgeries and treatment is difficult enough, but living alone and in the height of the pandemic posed additional challenges. Now, three years later, she is active in the breast cancer community. She's sharing her story and embarking on building a community for all things mastectomy and beyond. Her hope is that she can be a source of inspiration and hope to others who are going through their own breast cancer journey. Hi, jen, welcome to the show. How's it going?

Speaker 2: 2:53

It's going great. It's so good to finally be here. I've been really looking forward to this.

Speaker 1: 2:58

Well, good, I'm really glad that you're here and you know, like I said, we've had some great conversations together and you and I were talking actually earlier, before we're recording right now and I was telling you how I like to interview just a myriad of different people that have powerful stories, and you were saying something like well, I'm just an ordinary person and I said you're an ordinary person like I am, with an extraordinary story that can really help other breast cancer people who've never been diagnosed, people who've just been diagnosed, people who are going through it all right now the treatments, and even survivors. So I am thrilled to have you here. You and I have talked and we have similarities. Let's see, we've both been Optivea coaches.

Speaker 1: 3:45

Yeah, I still am. You know what? I still am too. I have to renew my membership real quickly, just because I really do love the program and it really helped me lose quite a bit of weight before breast cancer, which I believe helped me move through my treatment better Me too, absolutely, anyway. So you and I know Amy Bonosi, who wrote Bearing it All my Breast Cancer Fuckery, and I love that book so much. Yes, anyway, and anyone who Amy connects me to, I always know that I'm going to really connect with them, because she calls us all badasses, and so there you have it.

Speaker 2: 4:28

I agree. Yes, we are in that badass club. I think we were there before breast cancer, but breast cancer really has brought it to another level and I'm just really thrilled that you asked me to participate in the podcast today. And what I really love about your podcast is that you do have a whole bunch of different types of people and different types of information that's being shared, because I'm learning something every day, even though I've already gone through my surgeries and my active treatment and things like that, and I think, oh wow, you know, I didn't even know that. So I really appreciate the opportunity.

Speaker 1: 5:05

Yeah, same girl. I actually learn a lot from my episodes too, because they're the people that I speak with, and literally I close my computer after an interview and I look at my husband and go I am blown away, like I just learned something completely new. So, yeah, no, I get it, and that's what my main focus is to do is to be able to shorten that learning curve and teach even more through other people for other people. So you mentioned something about us being badasses before cancer, and I couldn't agree more. I really think that the people that we were before cancer helped us really move through and advocate for ourselves. So I would love to know who Jen Tober was before breast cancer.

Speaker 2: 5:48

Well, Jen Tober before breast cancer. As you already mentioned, I'm a divorced mom of three adult kids, and they are absolutely my world. I'm a daughter, I'm a sister, I'm a friend, a connector, a fixer, and I'm a recovering imperfect perfectionist. I always kind of felt like I had to do things the right way or else maybe not go ahead and pursue them, and my experiences through breast cancer, of course and we'll get to this a little bit later have truly changed my mindset a whole lot about that. I got divorced when my kids were very, very small, so it was a tough journey raising these three kids. Their father is definitely still in the area and was involved, but it was challenging.

Speaker 2: 6:38

I always said that if we had our health, that nothing else really mattered. We'll figure the rest out. So when this diagnosis came to me, it was just mind blowing, because there it was. Well, oh my gosh, I don't have my health. You know I can really relate to your story that you've shared, that you had just retired and you were looking forward to what is retirement going to look like for me, how am I going to enjoy this and what's down the road. And then, all of a sudden, within what was it like a day or two a week, you were given this life altering diagnosis of breast cancer. And so for me, the kids were out of the house. I had downsized, I had moved into a condo and I was like, yes, what's in store for Jen Tober? I was so excited. And then the pandemic threw a big wrench in things. And then, about a year after we were into the pandemic, but we were still full blown in the midst of it I got this breast cancer diagnosis out of left field.

Speaker 1: 7:43

Yeah, it's really interesting that you say that you didn't have your health, and I want to talk about that Because in actuality, you did have your health and that is something you probably had. This happen to you when I came out, because I'm a pretty open person. I came out on Facebook. I'm like, well, fuck, I have breast cancer. I mean, I'm pretty open, like that and it was amazing how many people well, not how many, but probably were thinking it privately, but some people came out with it publicly. Oh my God, jamie, but wait, you were so healthy and I was so confused because I'm like I am healthy. And then I started feeling like, am I really not healthy? And I started feeling almost shame because it was like I was out there with my Optivea program saying, oh my God, I'm so much healthier, I feel so much better. And I did, and I was.

Speaker 1: 8:38

And it turns out that healthy people can get cancer too. So people are not too healthy. People are not too young, too old, too anything, and when you're healthy, it's a good thing that you're healthy. But healthy people do have cancer cells we all do and it's a matter of some circumstances that have come into play. You mentioned you had gone through a divorce. You're raising these kids, then the pandemic hits. That was a very stressful time for you, and when mine hit I was going through a lot of stress as well. So I mean we can say this is why it happened. All we want we'll never know, because that we go down a rabbit hole that way. But the fact is that you were healthy probably dictated how well you were able to get through that treatment, more so than someone who is not healthy.

Speaker 2: 9:28

Absolutely 100%. And I do tell people that all the time I was at my best physical health at all, I think ever. I was at a healthy BMI, I was exercising, I had no preexisting conditions. It was exercising, I had no preexisting conditions. It was wonderful.

Speaker 2: 9:47

And yes, we do need to kind of differentiate or explain that just because you have cancer doesn't mean that you're not healthy. But when I realized, yes, I was healthy, but the breast cancer diagnosis does not discriminate, apparently, and it can find its way into an extremely healthy body, but it does threaten your health and it does threaten you feel the sense of, oh my gosh, is this going to be it? Yeah, how bad is this going to be? Because we don't have all those answers right away.

Speaker 2: 10:19

We're slowly getting these little bits and pieces of information and I'll tell you one of the best bits of advice that an extremely close girlfriend of mine, who also happened to be my oncology nurse and she was my best friend since college before she was my oncology nurse the first thing she said to me is she said, jen, I just want you to know that things can change and most likely things are going to change as you start heading out on this journey of yours. So just be prepared for that. You know it's not all negative changes. Some of it is really great. You know, progress changes that you weren't expecting, but there is change. So it can be sort of this up and down kind of a thing.

Speaker 1: 11:03

Yeah, yeah, yeah, I definitely can relate to that. So you were diagnosed. Talk to us a little bit about what your diagnosis was specifically and what your treatments were, and then even into your surgery.

Speaker 2: 11:19

Yeah, sure. So, as I mentioned, I was perfectly healthy and even during the pandemic I always went to my well visits, never skipped one Dentists, doctors, everything. I just really kept up with it. And I went in for my annual well woman visit and part of the exam, as you know, is they do the breast examination. And my gynecologist, right away, she says Ooh, what are these lumps? And I was like what? And I will be perfectly honest, I did not routinely do the self breast exams. The reason I didn't is because I have highly dense breasts which I feel like everybody is told it just seems really kind of par for the course for a lot of women and every little thing I would feel I got nervous. And the whole point of those breast exams truly is just to get to know your body, because you are going to feel little imperfections, you are going to feel little things, but that way you get to know your body so that when you actually feel something that's different you can then question it. So anyway, she then said to me I want you to get a diagnostic mammo. And I said, all right, I was concerned, but I wasn't completely freaked out yet it really hadn't set in. So she's the one that actually discovered the lump. It most likely would have been detected in my regular mammogram that I was going to. You know it was time to schedule anyway, but we just found it, I guess a little bit sooner, I guess. So, basically, after you know, I had the diagnostic mammogram and on the same day I had the ultrasound, and on that same day we had to schedule two different types of biopsies because they found three areas of cancer in my left breast. Just to remind you, because I've told you, but obviously nobody else knows this, I'm I tested negative for the BRCA mutation, so it is not something that I was predestined to in some way and we had no family history of breast cancer. So it was pretty scary. So one area in my breast was DCIS and it was stage zero, so it was just sort of like a pre-cancer cancer kind of thing. But they did find two masses of IDC, which is, it was poorly differentiated invasive ductal carcinoma, which is a big scary word for actually a big scary thing. So it was kind of fitting and after more tests I was placed at grade three, which is the highest of the grades, which you really don't want to be grade three, much rather be grade one.

Speaker 2: 14:07

I was put at stage two because of the size of the tumors. It turned out I was hormone positive, hormone receptor positive, which meant that my tumors were growing off of the estrogen that was in my body. And I was 55 years old at the time I didn't mention that yet and I was already post-menopausal but even so these tumors were growing very nicely off of estrogen that was in my body. I was HER2 negative and I was told by the tests that were run that my lymph nodes were clear. So I was very excited about that because I thought there was going to be a good chance for chemo. Turns out, during my surgery, which I'll get into in a minute, they did discover a 1.5 millimeter speck in my lymph nodes. So that changed the trajectory of my treatment. But it's so incredible that they're able to figure all that out while you're actually under anesthesia on the table. So it doesn't require for me it didn't require an additional surgery, which was a relief.

Speaker 2: 15:11

Then the Oncotype score, which comes back post-surgery, which really dictates the need for chemo. I came back a little high. My Oncoscore was 31. And anything over a 26,. It's recommended chemotherapy as a course of action. They had anticipated it would be needed. But that really kind of solidified it. So it was recommended that I have one breast removed because of the three areas.

Speaker 2: 15:38

The breast surgeon told me that I would not be happy with the cosmetic outcome if they went in and did three lumpectomies in one breast. At that point I got all these. She really talked to me and gave me statistics and she said that it really wouldn't be any benefit to remove the right breast as well in terms of this particular cancer migrating over to the other breast. Somehow, and just in my mind, I just didn't feel good about that at all. Seeing how quickly this came, nothing was present the year before when I went in for my mammogram. And here it is three areas in my breast and my left breast and coming back as aggressive as it was. And I said to her I said, well, it may statistically not be a benefit for this particular cancer, but since one in eight women are going to be diagnosed in their lifetime, who's to say I can't be one of those random one in eight cancers in the other breast? And she said, well, you can.

Speaker 2: 16:42

And at that particular moment for me I said you're taking both of them. I was just going to be proactive about it. I decided you know this is going to be a two for one I'm going to do the surgery all at once same surgeons, same recovery period, same everything and I'm very glad that I did. I mean, there are pros and cons to everything, especially in this kind of a situation, but you do the best that you can do with the information that you can gather in such a hurry and under such duress. I wasn't able to go into these appointments with someone because of the pandemic. Three of my best girlfriends are nurses, so I would have them on speaker, I would conference them into these meetings and you just make the best decisions that you can. But I'm grateful because for me I wouldn't want to have to go in and get a mammogram every six months or every year, whatever it be, now that I do have a cancer history. So I'm glad I don't have to do that.

Speaker 1: 17:48

I'm glad you had those nurse friends. I'm glad you were able to at least conference them in because that's scary.

Speaker 2: 17:51

They were amazing, amazing. When I was first diagnosed it was like I'd gotten struck by a harpoon. I was curled up in fetal position in bed for days. I was numb and one of them came over and she was the one that called my kids. She was the one that called my mom and told her because I was listening in, but I was just in shock. I was in shock and fear and it's as you know, it's debilitating, it's the worst feeling.

Speaker 2: 18:20

So my surgery got set up pretty fast for the bilateral mastectomy and after that I had five months of very intense chemotherapy for dose, dense or dense dose. It's one of those two of the ACT chemo, which is that infamous red devil. There is a very good reason why it's called the red devil it is a bitch. Physically, mentally, emotionally it was horrible and usually they give it every three weeks so you have time to recover in between, and I was hit every two weeks. It was pretty wild.

Speaker 2: 19:00

And then after that I had four not four 12 weekly rounds of Taxol, and so push through that without delay, like I didn't have any setbacks whatsoever as I was going through this, and I do attribute that to being in good physical shape going into the treatment. I totally, totally give all that credit there. And then I did have the radiation. Following the chemotherapy I had a few weeks off and then it was 25 rounds of radiation five days a week for five weeks. So finished all that up by, let's see, I was diagnosed April of 21. And I finished all my active treatments the very end, like basically December 30th of 21. It was a lot.

Speaker 1: 19:53

Yeah, that's a lot. Yeah, it's interesting because I interviewed a radiologist while she works in the mammography field and radiology and she was talking about how there's actually radiation out there where you only it's like a one and done. There are options out there, not in every community, but to be able to do way less radiation than what most of my friends and people that I've met have done.

Speaker 2: 20:23

Yeah, things are rapidly changing and there was actually a study being done at the time where I could have received, I think, five less treatments and been part of the study and, honestly, I was just so burnt out at the time and I just didn't want to be part of any you know new study. I just wanted to get this done, like literally burnt out.

Speaker 1: 20:44

Like literally crispy, yes, yeah, yeah, I was very crispy. Yeah, it's amazing what you have to go through to get through the whole craziness, and I definitely know that overwhelming fetal position. I'm so scared feeling and I just really want to be able to support people that are diagnosed now or will be, so that they can understand, and I was lucky because I had some friends and people who've just sort of came out of the woodwork to help me through it, and friendship is very important. You know you mentioned that you have your three nurse friends. You had something else that I found really intriguing and you did a great post on Instagram the other day that featured Lenny Kravitz. Can you walk us through?

Speaker 2: 21:33

Oh my God, how long do we have on this podcast? I can talk about Lenny Kravitz for hours.

Speaker 1: 21:38

Yeah, I just want to know where all that came from and tell us the story.

Speaker 2: 21:42

I just want to know where all that came from. Yeah, and tell us the story. Yeah, all right, it's a fun story, I will have to say. And when I finally had my surgery date scheduled for the bilateral mastectomy, it was on May 26th, just the random date that I was given.

Speaker 2: 21:57

But I'm you know, all my friends know that I'm a huge Lenny Kravitz fan, love his music, love his vibe, love his message that he throws out there and what he represents. And so I was making this joke because you know you have like for me, I have to find some levity even in the worst of circumstance, because that's just how I roll, that's how I get through things. So I started this joke with my girlfriends and I said yeah, well, you know Lenny's going to be so bummed because I had to cancel our plans to celebrate his birthday together. He was really kind of bummed, but you know I'm a little bit busy, so you know we'll just have to celebrate some other time. So that was sort of the running joke when I was at the hospital, literally under the knife, and my surgery was an outpatient procedure. That's a whole other topic which I'm sure we're not going to get into today, but that should be against the law, absolutely. I went into the hospital and having your breasts removed is a full-blown amputation. And having your breasts removed is a full-blown amputation. Then at the end of the day they sort of wind you up, spin you around and push you in the wheelchair out the door and they say have a nice life. You know it's like, oh geez. So I obviously had covered my bases and I had one of these nurse friends of mine staying with me for the first 48 hours and then my kids were staying with me after. So I was not alone for that first week.

Speaker 2: 23:26

But getting back to my story, when I was having the surgery, one of my girlfriends snuck into my place and she put a Lenny Kravitz cutout, you know like those big, almost life-size cutouts, and she placed it by the foot of my bed with a card. So when I came in, you know, later that day, after one of the most horrible, crazy, fucked up kind of days and I am on drugs and painkillers and I'm being led into the house and I had, you know, had a few girlfriends there, one of my sons and I said who's in my bedroom and I walked in, standing by my bed was Lenny Kravitz. So we were dying, we were absolutely dying. And then we wound up having this insane photo shoot with me with this cutout. And yeah, some of those pictures are highlighted, you know, from the day of the surgery, in that reel on Instagram. A lot of those pictures are not in that reel because they were just too insane, too crazy, only things that girlfriends will do. But it was just a bunch of laughter, it was levity, it was laughter.

Speaker 2: 24:38

I felt all the love from my girlfriends and so I decided that I was going to. You know I didn't decide right then and there, but you know, a few days later I decided you know, I'm going to take this cutout on my journey with me and just kind of like take pictures along the way, because why not? So I took it with me as I was getting my hair buzzed. I took it with me to my last chemo appointment, to radiation. I wound up getting tattoos afterwards, which we'll get into discussing decorative breast tattoos. I took him along the whole journey.

Speaker 2: 25:12

So this reel kind of puts that all together and I share it for many different reasons, but the biggest reason is I'm really proud of all that I've come through. The biggest reason is I'm really proud of all that I've come through, all that I've gone through and where I am now, and I want to show other people who are going through a similar journey that you're going to get through this, it's going to be okay, you're going to get through, and seeing all that I went through and how I'm now I mean, you know, in a different place in survivorship and thrivership and a livership I think it's important for people to see that.

Speaker 1: 25:52

I do too, and that's why, you know, I always ask people what is your survivorship like? Like, how do you support breast cancer people who've just been diagnosed, or maybe caregivers and anyone? How do you support them in your survivorship?

Speaker 2: 26:07

It's really interesting. It's something for me supporting other people has become. It's just something that I kind of naturally fell into because I've always enjoyed, you know, helping people just in any way that I can get through tough times and I wound up. You know, a lot of my friends are connecting me with other people who were newly diagnosed so that I can talk to them, answer questions. If they would like advice, I can advise them. Obviously, whatever they decide to do has got to be. Whatever decisions they make have to align with their life. So I am never going to profess what somebody should do or should not do. I kind of will lay it out from what I know with my experience and what I've learned, because knowledge truly is power and you don't know what you don't know. There are certain things that I never would have considered, certain questions that I didn't know to ask. I just think that the more we talk about it, the more we can support each other, the better people are going to be going through this.

Speaker 1: 27:15

Yeah, I totally agree you and I were also talking about. Well, first of all, I was told at the very beginning that this was the sisterhood of all sisterhoods and it just is. I mean, it's insane how many people out there who are like us, that we really want to support people, and for the right reasons, and I like that. You're such a down to earth, genuine person who people can connect others to you, and I get a lot of people connecting me to other cancer patients or people who have just been diagnosed as well, and I think that's so important that we all come together like a collective mission to be able to shorten that learning curve for people, because it's a village.

Speaker 1: 27:56

That's what it is. It is, it is and, like you said, there were so many things that you did not know before breast cancer. I mean, you knew some things but you didn't know a lot of things, and that's the same with me. I've always taken care of my breast health and my gynecological health. I've always listened to my body, but I was just blown away and just knocked down like crazy at all of the information that was coming at me that I know things that I had to consider, like you know, my breast surgery and things I didn't know about breast surgery and what I know, things that I had to consider, like you know my breast surgery and things I didn't know about breast surgery and what I know now, and so I think that's wonderful. You have an Instagram page. Tell us about your Instagram profiles and how that plays.

Speaker 2: 28:39

Well, I primarily use Facebook. I use that, you know, obviously for the Optivia, coaching and things like that, and I do have a personal Instagram at Jennifer Tober Okay, and I've never really used it a whole lot. But I decided now, as my journey, now that I'm post treatment and how I want you know I'm becoming more and more involved in the breast cancer community and I love that I did decide that I would like my focus to primarily be on everything mastectomy and beyond. So that's the name of this new Instagram page beyond mastectomy. It's really in its infancy. I think I have like 15 followers and I've only made a couple posts.

Speaker 1: 29:27

That's okay, it'll organically grow, I promise.

Speaker 2: 29:32

It's at its infancy, so maybe you know, when we do another podcast a year or two down the road we'll see how many thousands of followers and how big this has become. But I think it's really important. What I would like to do is help other women feel and look their best post-mastectomy, because I truly believe that the scars we wear and the wear and tear on our bodies after going through the surgeries really tell a story of strength and perseverance, and I really feel badly for the women who are ashamed of what their body looks like Now. Granted, there are better surgeons than others. People have different resources than others, so some of the post-mastectomy appearance is a little easier to accept than some of the others.

Speaker 2: 30:29

But there are certain things that you can do, if you wish to, to take your power back, to define your own beauty, not necessarily to try to go back to what you were before, but how can you redefine yourself going forward, and that's what I really like to focus on. Initially, you know and this can be for people who have had reconstruction, people who have decided to have an aesthetic flat closure which I actually did consider very carefully before I decided on reconstruction with implants or even people who have proactively had this bilateral mastectomy, people who found out they have had the BRCA mutation, who have decided to be proactive and remove their breasts. So there are just certain things that you don't realize. I mean, honestly, I never really thought about the fact that when your breasts are removed, you're most likely going to lose your nipples.

Speaker 2: 31:32

Me neither. I didn't know, I don't know. I just never had to really think about that. So I'm like, well, of course, that's most likely going to happen. I guess that really makes sense. So I want to find a place, a space where people can come to find out, cosmetically, what can we do, what are the options out there? And I thought I was going to do these 3D nipple and areola tattoos, which are absolutely fabulous, and I've also think that you just got yours done.

Speaker 1: 32:06

I did. I, you and I were just talking about this. We actually made a girl's trip out of it. There were three girlfriends of mine one that I had met very, very briefly at the hospital last December, but that was the first time we'd ever met in person, and the other two I had never met them. Only We've all been talking, ever met them. We've all been talking for a year and a half on FaceTime and emailing and whatever. We've just become super good friends but just never had met in person.

Speaker 1: 32:38

And so we all decided to make a girl's trip out of it and we went to San Antonio to a medical facility called Perky, and Crystal and Courtney are the two nurses who run that and do the nipple and 3d nipple and areola tattoos. And I got to tell you, jen, that was one of the most impactful trips I've ever had. It made my heart so happy and all of our nipple and areola tattoos turned out amazing. I love that. It's like a game changer and I never even knew anything like that existed. Like you look in the mirror and it's like I came home and flashed my husband and he's like, whoa, that looks so real.

Speaker 2: 33:20

Yeah, it's really amazing what's possible, and you know the fact that you made that into a whole event too, with your new sisters, so to speak. It's not only the product but the process too. You know it's a celebration.

Speaker 1: 33:36

It's part of the restoration and so we were given insurance paperwork for insurance, because insurance has to cover it by law. That's part of that restoration, that the surgery for breast cancer patients and the restoration, all of that by law has to be covered. That's wonderful. I didn't know that. Yeah, I didn't know that either, so I just submitted all of my stuff so we'll see what my insurance does. But I have a cancer policy also, so I sent it into them as well. But yeah, it's part of the deal.

Speaker 2: 34:10

That's interesting. I was going to do that and then I just changed my mind. You know, girl can change your mind, right? So I decided to go down this other path, where I started looking at decorative tattoos something just to embellish and I went down this deep, deep, deep search. I loved it. It was research, looking for images online to get ideas and artists and things like that. So I did wind up going to New York City last year and over a two day period, I had these incredible watercolor floral tattoos done and they are so perfect, everything that I had ever hoped for and more, which is good, because if I didn't like them, it would be a little bit of a problem at this point. Yeah, for sure. Yeah, I love them so much.

Speaker 2: 35:06

And I did also make it an event, so to speak, for myself. Like you went with your girlfriends, I had two girlfriends each one on each separate day sat with me, and they're also breast cancer survivors. I didn't meet them through the breast cancer community. They're good friends of mine who were also breast cancer survivors. And of course, I had the Lenny Kravitz cutout with me, of course. Yeah, so those tattoos can be seen also in that reel.

Speaker 2: 35:36

But something else that I noticed in my research for what I could do. There are such things as nipple prosthetics and prosthetics that can be adhered with like a silicone, safe skin adhesive, and so you can remove them and reuse them, remove them and reuse them, and some of them are better than others. Some of them don't look so good and they don't look so real to me. So I discovered this woman. She's also a breast cancer survivor shocker and she lives in Israel and she was looking for nipple prosthetics and wasn't happy with what she was finding. So she learned how to make her own and she has this company now called Pink Perfect, and she makes Pink Perfect, I think I followed her.

Speaker 2: 36:26

I think you told me about her before, yeah she's amazing, you can get these prosthetics she has, like off the shelf in eight different colors and three different projections. Or, which is really cool is, if you've had a single mastectomy, she will send you an impression kit. You take an impression of your existing or remaining nipple, you send that back to her with pictures of your nipple and she makes a custom matching nipple for you. That is amazing. Yeah, I'm looking at it. Well, I was very intrigued. Yeah, there you go. So I bought a pair off the shelf because I was so curious and I have them here with me. I know that listeners aren't going to be able to see them, but those who are Go to.

Speaker 2: 37:14

YouTube if you want to watch. Yeah, this is going to bring people over to your YouTube channel, but I'm going to put one on my hand here, but I don't know if you can see. Look at that projection. This is just one color you can see. It's not really flush because I don't have the adhesive on Unreal, but they're so soft, I mean real.

Speaker 1: 37:34

I mean it's real, but it's unreal how real they are.

Speaker 2: 37:38

Yeah, so you can wear them swimming in the shower, you can sweat in them and if you take good care of them, they'll last for years. That is really fascinating, she has this policy.

Speaker 2: 37:49

If you're not happy with them, you can return them. It's a win-win. And she also has forms on her website that you can use to submit to insurance and clearly that's an individual thing with your policy. But I love these and I love her so much. I connected with her and had this incredible conversation with her that I'm now an ambassador, if you want to call it that. Also, in the show notes I guess you could put, I have like a little code that will give people a discount if they want to go on their website. Let's include that and order a pair. Yeah, I just love it. So I do have my tattoos, but if I want to sport a nipple or two, I can. I can even put a ring through this if I want to have a pierced nipple.

Speaker 2: 38:31

Oh my goodness, I know right, and it won't hurt, and it won't hurt, and it won't hurt.

Speaker 1: 38:37

No, no God, I didn't even think about that.

Speaker 2: 38:40

Yeah, the only thing it does not have is sensation. So maybe down the road there it does not have is sensation, so maybe down the road there will be a prosthetic nipple with sensation, but it was the best find.

Speaker 1: 38:51

How would they do that? Gosh, darn, I don't know. That would be so fascinating. I just think that's great and I think it's really important to send that message that there is a way to feel beautiful in your body. Again, we're on the other side. We do feel beautiful. I never thought I would. I was so horrified when I found out I had to have mastectomy. Would I do it over again? No, I would rather not. But at the same time, I have been able to move through this craziness to where I am right now and getting to talk to folks like you and connecting and helping and supporting. But I will say, without a doubt, I feel really good in my own skin and even if I didn't have the nipple tattoos, I still already felt okay. You know, we do feel different. When you first showed me your artwork on your breasts, I was just so amazed at how beautiful it looks because, man, that just gives you so much power and, like you said, taking that power back, you know, taking that power back, yeah.

Speaker 2: 39:56

Yeah, no, I appreciate that when I tell people what I've done, they they're like oh wow, that's cool. And then when I show them, they're like oh wow, I didn't know you meant that it's tasteful, it's nice, it's art, it's art on my body. So there's nothing sexual, it's just beautiful art. And when I look in the mirror I'm like I love it. It's hard to keep my shirt on. I just want to walk out my front door without my shirt on and be like hey, I do have to tell you one funny thing.

Speaker 1: 40:26

I was putting this link in that document so I don't forget for the prosthetics. It was really funny because I think it was like the morning after or the night of I can't remember what it was that we got our tattoos. We were back at the Airbnb and one of my friends, kim we were just used to showing each other our breasts because we wanted to see how we were healing and all of that, three of us had the same surgeon and the other person had her surgery at Center for Restorative Breast Surgery at least part of it. But she came out and she had her hands over her breasts when she came out to the living room and she realized she goes, you guys, I'm covering up my breasts as if I'm modest. She goes that that's not something I've done in a really long time, but because I have these nipples, I'm covering it up. I just realized that that's wild.

Speaker 2: 41:16

It was really wild. Yeah, it was like wow.

Speaker 1: 41:20

So that's how impactful they are. And I remember at the beginning of my diagnosis I talked to a really good friend of mine who had had breast cancer like six years prior or whatever maybe even longer actually and she said that six years after her mastectomy and reconstruction she discovered there was such thing as nipple and areola tattoos and she went to Arizona and got hers done. She said, jamie, she says it's a game changer. She says you have to Google what that looks like, cause, she told me at the beginning, she goes. My first piece of advice is don't Google stuff, cause you know you can go down a rabbit hole she's like.

Speaker 1: 41:59

I take that back Google nipple and areola tattoos because it is fascinating. And she says I look in the mirror now and I'm just blown away at how real they look.

Speaker 2: 42:09

Yeah, yeah, it's really stunning, it's incredible, and the fact that your friend felt the need to be a little modest there shows what it does to your psyche to make you feel the way you're feeling. It's right, wonderful, and it's so nice that there are options. I have a friend who I said, oh, and I still thought I was going to get the nipple tattoos. I said maybe we can go together because she had her reconstruction about five years prior and had done nothing. And she says, no, you know, I think I'm good, I'm really good and that's great. Yes, there's no right or wrong, there's no pressure. Do you boo?

Speaker 1: 42:45

That's kind of the way I thought the same thing. I felt fine before mine, and so I'm kind of I would describe myself as feminine and a little bit edgy, and so, my personality being that way. And I have other tattoos I have a big old Phoenix on my back of my neck which I was going to put on my left arm, but I couldn't because I had some lymph nodes removed, so I ended up putting it on the back, and I've got a few other tattoos and I'm not like covered in my whole body. I'm feminine and I'm edgy, and that is just sort of my personality. So I really wanted to do it because I really wanted to know what it would look like too. So I really wanted to do it because I really wanted to know what it would look like too.

Speaker 2: 43:28

So I'm happy I did it. It's fabulous. And for those who are kind of on the fence and don't know what to do, for those overthinkers like me, I went on Amazon and I ordered some temporary they did not look very real but temporary. Those lick and stick tattoos very real but temporary. Those lick and stick tattoos. Wet and stick nipples and also flowers. So I could play around and get an idea of what it would look like and I could remove them.

Speaker 1: 43:55

Right?

Speaker 1: 43:55

No, that's such a good idea. That's such a good idea. I love it. So I want to wrap up here by asking you. I always ask my guests who are well, really anyone. By asking you, I always ask my guests who are well, really anyone, because I think it's such an important question.

Speaker 1: 44:10

Most people are thinking that podcasts, you know, are pretty much talking to other breast cancer patients, which we are, I mean, obviously. But also I like to reach those people who have never been diagnosed and, as we talked about before, there were so many things we didn't know. I have mentioned this on a couple of other podcasts that I have a friend of mine who asked me one time, like why do you want to target people, an audience of people who've never been diagnosed, who are a lot younger, even because we know that you can't be too young? I've interviewed a lot of people who knew people who were in their twenties, and I've interviewed a lot of people who knew people who were in their 20s and I've interviewed people who actually were in their 30s and newly diagnosed when they were pregnant and all of that stuff.

Speaker 1: 44:52

And I remember when I was that age it wasn't even on my radar, I wasn't even thinking about that, but knowing what we know now, she asked why do you target those people? It's not even on the radar, and that's exactly why is because we need it to be on their radar. People, it's not even on their radar, and that's exactly why is because we need it to be on their radar. We need them to be becoming familiar with their bodies and what they feel and being able to advocate for themselves that they go to the doctor and say hey, look, I feel this lump or I see this inverted nipple or discharge or whatever it is. So I always ask people what is a really powerful piece of advice that you can give to people who've never even been diagnosed?

Speaker 2: 45:29

It's excellent and I'm glad that you do focus on that, and it can be a very broad question, but I think really for people to just understand that one in eight women will be diagnosed in their lifetime. I knew that, basically, and I chose not to do the self breast exam. Now if I had said, all right, jen, one in eight women, there's a really good chance that you're going to be diagnosed someday. Start feeling around because you want to catch that shit as early as possible. If I had caught it early enough, I probably, knowing me, I probably still would have had the bilateral mastectomy, but I could have possibly averted the chemotherapy and the radiation therapy. And those are two major things to avoid. Because for those who have not yet been diagnosed and who might think that once you do get through the surgery, through the chemo and through the radiation or whatever it is, that you're done with cancer, with breast cancer, that's incorrect.

Speaker 2: 46:44

I've had so many people and dear friends of mine who mean the very best I know they do. They say to me oh, I'm so glad that's all behind you now. I probably would have said the same thing at one point. I mean it's a really understandable thing. However, what I didn't get at the time is that they never tell you that you are cured. You are NED, like I've been dubbed NED no evidence of disease and that's fantastic, don't get me wrong. That's what I want always have in the back of their mind and I don't let it rule my life. I cannot allow for that. But in the very back of my mind I know it can come back, it's possible. And number two I have what you know I saw somewhere. I wish I could take credit for this.

Speaker 2: 47:38

Instead of side effects, this person calls them side effucks, so the side effucks of chemotherapy. I still have side effects. Some, you know, brain fog, things like that. I mean it was poison pumped through my body, poison they went in there, you know, with dynamite, the side effects from the radiation. I heal beautifully and I'm very lucky, but I have tightness in that side. I will always have tightness in that side and I have to work on it daily.

Speaker 2: 48:09

Plus, I was on a medication called Versenio for two years. I'm on another medication for a total of 10 years I've already been on it for two years called Anastrozole, which depletes you of all remaining estrogen in your body, which is a very potent medication and it really affects you physically and for me, it affected me mentally because of the depletion of the hormone. I wound up in a very deep depression and I had to deal with that. So it's ongoing. You're never really done. So if that's any motivation to do your monthly self-examination to maybe avoid some of the side effects, because, as we already talked about in the beginning of this podcast, breast cancer doesn't discriminate. It can find its way into the most healthiest of bodies. So until things change, until there is this vaccine, until there are other options, this is what we've got. So to be proactive and to know your body and to discover things as early as possible, that's key.

Speaker 1: 49:21

Yep, and if you don't know yet, that's why I named my podcast the way I named it Test those Breaths and don't ignore yourself. You need to put yourself first. I know that people are very, very busy. I get it. I was incredibly busy before breast cancer. I had just such a crazy full life, and I do now too. I'm just more mindful about it. But we don't want to put it off.

Speaker 1: 49:46

I had symptoms before I had my mammogram. Had I gone in earlier that spring, I may have been able to catch it a little sooner. It was stage two by the time I discovered it the year before. They hadn't detected anything, but mine was aggressive. I did feel burning sensations, I felt zingers, I did feel a lump and I just thought it was my lumpy breasts, because I had dense breast tissue, of course. And I just really test those breasts. Man, test those breasts. I mean, amen, sister, go smash them, get them, get it done and get a I mean, yeah, an ultrasound along with it too. If you have dense breast tissue, you should know this by now and you should ask for an ultrasound as well and make sure that they are doing everything they can.

Speaker 2: 50:36

I wish I had known that, because I can see more than the mammography can at some points and it doesn't take the place.

Speaker 1: 50:43

It doesn't take the place of a mammogram. You want to do both. You want to do both.

Speaker 2: 50:48

Yeah, yeah, yeah, I agree, and that is incredibly valuable information, so I'm glad you brought that up again.

Speaker 1: 50:56

Well, I am going to ask you to go into that document and put your code in there for those prosthetics. I put the Instagram link in there and I've got your Instagram. I've got your beyond mastectomy on Instagram, and then I also have your.

Speaker 2: 51:13

I have a total health assessment that you have on your link tree. What is that? Oh, that is for the Optivia coaching. So if anybody's interested in learning, yeah yeah, I didn't realize that you were able to pull that. So that's, you know people are interested. Sure, you know, it's just a little health assessment and a way to get in touch with me and, you know, no pressure. Like I said, knowledge is power.

Speaker 1: 51:32

Explore a little bit together and see if it can be helpful for you Such a great program and I am renewing my membership, so I will. I'm always there to coach people and I still have clients who are on the program and things like that. Well, clients who are on the program and things like that. Well, jen, this has been such an amazing conversation. I really appreciate your being on with me today and I feel that we have a lot of collaboration to do. I would love for you to be more involved in my nonprofit as it kind of starts getting out there. Would you like to leave us with anything before we disconnect out there, would you?

Speaker 2: 52:07

like to leave us with anything before we disconnect. Oh gosh, my last words of wisdom here. Well, first of all, thank you as well for having me on. It was really special for me and I would love to collaborate, going forward, I guess, just going forward to just really be aware of your body. Like we've already said, speak up for what you need, what you want, what you feel you should be doing, and if you get information that doesn't sit right with you, go somewhere else and ask again. Trust your gut on a lot of things, because sometimes, and very often, you can be right. I love it.

Speaker 1: 52:45

Well, thank you for those words of wisdom and thank you for your extraordinary storytelling from an ordinary person who is just amazing to me and I just love the fact that we're so. We have so many things in common that I'm just really happy. I'm happy to know you.

Speaker 2: 53:04

We do. I'm happy to know you too. This is a wonderful connection, thank you.

Speaker 1: 53:08

You're so welcome into my audience. I really appreciate again for your joining us on this episode of test those breasts. I would love it if you would subscribe on your favorite platform and rate and review this podcast. It definitely makes a huge difference and we will see you next time on the next episode of Test those Breasts. Bye for now, friends. Thank you so much for listening to this episode of Test those Breasts. I hope you got some great much needed information that will help you with your journey. As always, I am open to guests to add value to my show, and I'm also open to being a guest on other podcasts where I can add value, so please reach out if you'd like to collaborate. My contact information is in the show notes and, as a reminder, rating, reviewing and sharing this podcast will truly help build a bigger audience all over the world. I thank you for your efforts. I look forward to sharing my next episode of Test those Breasts.