Episode 43: Journey Beyond Diagnosis with Laura Carfang's Survivorship and Advocacy

When Laura Carfang, survivor and beacon of hope, graced this podcast, she didn't just share her story—she gave us a masterclass in resilience. We traverse the highs and lows of her journey, from diagnosis at 34 to her tremendous work as the founder and executive director of https://www.survivingbreastcancer.org/ Her candid conversation with me, Jamie Vaughn, reveals the mountains she has climbed, both in healthcare and in advocating for self-awareness, painting a vivid picture for all of us who have been touched by this disease or support someone who has.
We delve into the genesis of SurvivingBreastCancer.org, a platform that offers a lifeline to those navigating the murky waters of diagnosis and treatment. Our discussion is not just about the birth of a community but also about the importance of caregiver support and the profound impact each person can have through engagement, whether by volunteering, donating, or simply listening and sharing.

Contact Laura Carfang: 
Surviving Breast Cancer on Instagram

Surviving Breast Cancer on Facebook

Surviving Breast Cancer on Twitter

Surviving Breast Cancer Website
Resources: 
Breast Cancer Conversations Podcast

Surviving Breast Cancer Blog

Surviving Breast Cancer Events

Are you loving the Test Those Breasts! Podcast? You can show your support by donating to the Test Those Breasts Nonprofit @ https://testthosebreasts.org/donate/

Where to find Jamie:
Instagram LinkedIn TikTok Test Those Breasts Facebook Group LinkTree
Jamie Vaughn in the News!

Thanks for listening!
I would appreciate your rating and review where you listen to podcasts!

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: 0:01

Welcome to season two of Test those Breasts podcast. I am your host, jamie Vaughan. I am really excited to continue this journey and mission into 2024 to help shorten the overwhelming learning curve for those who are newly diagnosed, or yet to be diagnosed, with breast cancer. It has been such an honor and a privilege to be able to connect and interview many survivors, caregivers, oncologists, surgeons, nurses, therapists, advocates and more, in order to provide much needed holistic guidance for our breast cancer community. Breast cancer has become such an epidemic, so the more empowered we are, the better. By listening, rating, reviewing and sharing this podcast, it truly does help bring in more listeners from all over the world. I appreciate your help in spreading this knowledge. My episodes are released weekly on Apple, spotify and other platforms. Now let's listen to this next episode of Test those Breasts Today. I am so honored to have my new friend, laura Carfang, on my show.

Speaker 1: 1:12

Laura is the founder and executive director of Surviving Breast Cancer, an online educational content and community-driven platform that fills a gap in the breast cancer arena. Through weekly support groups, workshops and webinars, laura has created a home for those who have been touched by breast cancer. Additionally, laura hosts and produces the globally recognized podcast, breast Cancer Conversations, which offers weekly episodes capturing the voices of those diagnosed with breast cancer, as well as doctors, oncologists and medical experts in the field. Laura is an accomplished academic, having earned a BA in Fine Arts and an MA in Italian Language and Literature and her doctorate degree in Higher Education, and serves as the director of Academic Affairs at Batson College, a top business school known for entrepreneurial leadership. She loves drawing upon her background to innovate and empower communities through education. Laura has presented research at healthcare ethics conferences, has been published in peer-reviewed journals such as Current Oncology, jco Oncology Practice, as well as Pharmaceutical Intelligence, wildfire Magazine, and has appeared on podcasts such as DJ, breast Cancer, the Intersection of Cancer and Life and the 1% podcast.

Speaker 1: 2:31

And now test those breast podcasts. Well, hi, laura, it's so great to see you. I'm so excited that we are finally connecting and I get to see your face and hear you and chat with you about some really important things today. I just want to let my audience know that I've been following you for quite some time on social media. I get your newsletters, I get an email, I'm pretty sure pretty much every day, and I see you on other platforms like LinkedIn, and you have quite a presence on social media, and I think it's really important for people to know who have not been diagnosed with breast cancer and who have been diagnosed, that there's so much support out there and I found that out in June of 2022 that this is the sisterhood of all sisterhood, so welcome, sister.

Speaker 2: 3:20

How's it going? Thank you so much. Thank you so much, jamie. It's a pleasure to be a guest on your podcast. As someone who runs our own podcast, breast Cancer Conversations, I feel like the tables have turned. I'm rarely a guest on someone else's show, so I'm really excited to be here, share my story and provide hope and inspiration to your listeners and community.

Speaker 1: 3:39

Yeah, I think that we have. I try to be on as many podcasts as I possibly can because it just opens up a whole new audience, that for people to hear everybody else's stories, and they're all so unique and I swear, every time I finish an interview I shut that computer and go, yeah, what a great story that people just need to know. So I appreciate your having a podcast too. I first want to kind of dive into your personal story with breast cancer, your diagnosis and your treatment, so that our audience can get to know you a little bit.

Speaker 2: 4:11

Yeah, absolutely. And again I just want to say thank you for being part of our survivingbreastcancerorg community and following us and connecting as well. That means a lot, especially in the world of podcasting, when it's audio and anyone around the world can just download. We don't always get the beautiful experiences of meeting who our listeners are or who's reading our newsletters or our blogs. They're just IP addresses. So again, I really appreciate that, Jamie.

Speaker 1: 4:33

Well, yeah, and I think my story is on your website.

Speaker 2: 4:35

Yes, yeah, that's really cool too, Awesome, amazing, I was diagnosed.

Speaker 2: 4:41

It feels like yesterday in some regards, but it was actually kind of a while ago. I was diagnosed in the fall of 2016. So way before COVID. Even I feel like COVID is like the milestone that everyone like benchmarks things against now. So I was diagnosed in 2016, at the age of 34. I never had a mammogram before. I was a strict vegan at the time, very athletic, healthy, bought a condo, thriving in my career.

Speaker 2: 5:07

Stories that I'm sure a lot of us have heard, which, like, live in the life, things were great, and I don't know if I was misdiagnosed earlier or just not taken seriously. When I was talking to my primary care about a lump that I felt actually under my armpit so it wasn't even on my breast I had this little like nodular thing like under my armpit that, for all intents and purposes, was an ingrown hair or just like a lump or something, something not to be concerning. When I was talking to my boyfriend at the time about it, I was like, oh, I'm not worried about it, it just always has been there. So, yes, we want to know our bodies, but then, at the same time, we also know our bodies. That like, oh, is that normal? Is that supposed to be normal? Is that something that has always been there, that doesn't cause alarm? And so I caution all of us, like when we get to know our bodies, to understand what the normal is and then to really be able to raise the alarms when something doesn't seem normal and not just to take like, don't worry, as as like the passive answer. So fast forward I think I was like 32 at the time.

Speaker 2: 6:10

Fast forward to 2016, at the age of 34, that lump actually was still under my armpit, but then I started noticing dimpling in my breast and again I was mentioning that I was pretty athletic and working out and I was a vegan, and at the time I'm like pumping iron in the gym and I'm like looking in the mirror and I'm like feeling really strong and buff and all these great things, and you know I'm excited that my pectoral muscles are like developing. But my left chest was not. It actually seemed like smaller and definitely lifting the same amount of weights on both arms, like I'm definitely doing the same things, like I don't know why. It just caught me in the mirror that like I looked a little like my chest didn't look the same from the right to the left. When I was examining my breast a little bit more, I did notice that there was like dimpling, and I didn't know that dimpling was a sign of breast cancer per se. I just knew at that point my breast shouldn't be dimpling because it didn't look like my right breast. And so then of course I go to Dr Google and I start looking at what does it mean when your breast starts dimpling? And then all of the information around breast cancer kind of proliferates. And so I went to my primary again to say I'm concerned, I'm noticing the dimpling. She still was not concerned at that time, which I found also again at this point a little bit more alarming because I'm like, well, this just doesn't seem normal. Can we at least get a mammogram to rule out breast cancer so I can at least sleep at night? I don't want the anxiety. So she luckily scheduled a diagnostic mammogram for the following week.

Speaker 2: 7:38

I went in for my very first mammogram, which was a diagnostic mammogram, and I thought it was going to be one of those things where I tell my employer like, hey, I'm coming in at like 10 o'clock, I have a medical appointment this morning, I'll be in at 10. Everything's fine, we'll catch up soon. Well, after the mammogram, they actually asked if I could stay and squeeze me in for a ultrasound during lunch, and immediately after that they wanted to do a biopsy all in the same day. So I called my boyfriend and I was like, oh my gosh, I think I need to hear at the hospital. I'm really nervous. I was like this was supposed to just be what I thought like a mammogram to rule out that it was in breast cancer.

Speaker 2: 8:18

That immediately got escalated into a mammogram to a ultrasound, and now they wanted to do like right then and there, a biopsy. And I remember the doctor coming in and I had to sign this waiver. She was like explain to me what the biopsy was. And like I've never even broken a bone in my life, let alone having to deal with cancer, I didn't know what a biopsy was, I didn't know how much it was going to hurt, and when she gave me the paper to sign, she was telling me that some of the risks of getting the biopsy is that I could have a collapsed lung because of where they were going in into my breast. And so I just had to sign off to say I understand the risk and I'm like, well, I don't know if I want to collapse lung. Like I didn't come here for this. Like you know, I was really concerned and I think I felt like it was just like signing my life away. I'm like, well, if I don't sign this, then you're not doing the biopsy and we will not know if I have cancer or not Before I sign this, and then something can go wrong and then I'm going to have like a problem with my lungs. What two evils do I choose? Yeah, but obviously you just like any medical thing. You like you sign your life away, you sign the forms. They did the biopsy and, needless to say, I called my employer and was like I'm just taking the full day off today, I am not coming in this afternoon and I just need some time to regroup. I think that was really traumatic.

Speaker 2: 9:30

Just the diagnostic component in and of itself. Not knowing anything, I have not having a mammogram before in my life, not understanding the difference between a diagnostic mammogram and a regular mammogram, not understanding I haven't had kids, I've never had to have an ultrasound for other things before either. So I'm like, what is all of this? What are you looking for and you're trying so hard to like. Read their faces when they're looking at the screen. Just give me some clue. But they must be all great poker players because they do this for a living and they're like, just wait, here we're going to bring in the doctor type of time.

Speaker 2: 10:01

I live in Boston and so I feel very fortunate that I have access to like some of the best hospitals and medical centers in the world. So, despite the circumstances, I felt like I was in really good hands. And then, I think like two weeks later, after I got the results of my biopsy, I was back-to-back appointments, meeting with oncologist and doing all sorts of further diagnostics to inquire, since the cancer had spread to my lymph node. So we did the biopsy on not just my breast tissue but also on my lymph node and because it has spread to the lymph nodes, we ended up doing a full bone scan as well to see if there was an extent of metastasis. We also did an MRI guided biopsy, which was also not very fine, but we wanted to make sure that there was nothing, also on the right breast and all sorts of things. So just to really get a sense of the landscape of cancer, to inform what my treatment plan was going to be, so that was quite intense.

Speaker 1: 10:57

Yeah, that sounds awfully scary. And, not to mention, you probably weren't even thinking, at the age that you were, that you had anything to worry about. You were healthy. You said you were healthy and it's interesting because when I was diagnosed, the first thing that people said to me was oh my God, jamie, but you were so healthy. And it really confused me because I thought to myself I am healthy, like I'm really healthy. I was at the healthiest of my life at that point and it occurred to me later on that I learned that healthy people can get cancer. Yes, yes.

Speaker 2: 11:33

And you can get cancer.

Speaker 1: 11:34

Vegans can get cancer, yeah yeah. So that's interesting that you were a vegan. You were an athlete, you really took care of your body. You were 34 years old and you have had no kids, or you had no kids at the time.

Speaker 2: 11:48

Not sure.

Speaker 1: 11:49

But that just sounds really scary. And I will tell you that, those poker faces I've learned how to read through them. Oh, what's the secret? When I'm laying there and I'm getting an ultrasound, I do look at the screen and I look at the text space and I usually can tell when they see something for some reason. And it's a dead giveaway too when they go out of the room and they come back and say the doctor would like to see you. So I knew right away. But you had a mammogram and ultrasound, a diagnosis, an ultrasound, and then to see the doctor and then straight to a biopsy that same day. That is pretty traumatic there.

Speaker 2: 12:27

Wow, I know it takes people like so long to even get appointments as well. So the fact that they were rushing me through, squeezing me in on doctors, lunch breaks, etc. For this also gave me some sense of fear and alarm that this was serious and they wanted to act quickly. I think part of it, too, is my age. We hear so many women under 40 being diagnosed with breast cancer. It's like this is scary, this is severe and we need to take quick action, and so really quickly. After all of the diagnostics, it was right into treatment and really not a lot of time to absorb what your diagnosis is and that you have cancer.

Speaker 1: 13:04

Right. I didn't even know what dense breast tissue was until probably my 40s and I had two lumpectomies in the last 10 years that were benign. When I would have my mammogram, I would say I need a diagnostics, I need an ultrasound. I wanted to make sure and there are so many women who are popping up who have been diagnosed in their 20s, late 20s, 30s, and I have interviewed quite a few so far.

Speaker 1: 13:29

My podcast well, it was born out of the understanding that early detection is so key in my audience, even though they're breast cancer survivors. But in a sense, sometimes that sort of preaching to the choir, and I really want to reach those people who have never been diagnosed as much as I can and I know it's so hard if you've never been diagnosed, you're really not listening so much because it hasn't hit you yet. That's really primarily when I want to reach people so that they understand that they do need to listen to their bodies and don't just blow it off and say this is normal or hmm, it must be stress or whatever. What was your diagnosis? Number one, what kind of breast cancer? And then what were your treatments?

Speaker 2: 14:16

Yeah, no great question and I commend you too for getting the awareness out there and the prevention right Just knowing what dense tissue is, understanding that different states in the US have different laws and regulations around what they're required to actually tell you about your dense tissue. So there's a lot of work to be done. So I appreciate you kind of bringing people onto your show to amplify those voices and opportunities.

Speaker 1: 14:38

And to collaborate with people like you. I feel like this is a good relationship blooming here, thank you, and we're all in this together and we're all really. Our aim is very similar, of course, and we have a fire in our belly to make sure that we get that message out there.

Speaker 2: 14:57

So thank you to Absolutely so to answer your question, I will start at the end with what my diagnosis is, but would like to share how we got to what that diagnosis was. So right now I say right now I was diagnosed with triple positive breast cancer, so that's hormonal receptor positive, her to positive breast cancer. That's why I say I am now. However, when we look at my treatment plan, I went through chemotherapy before surgery and then I had surgery. I had what I call a bilateral lumpectomy, which is probably not the technical term for it, but I had a lumpectomy on one side and reconstruction on the other. To make things a little bit more symmetrical, I had a full auxiliary no dissection where they took out all of my lymph nodes on under my left arm, and then I had a month of radiation, so 30 rounds of radiation treatment to my left breast, which also had had its own complications as well, because if you're radiating anything on your left side, it's so close to your heart, so I would love to like dive into some of that as well as well. So much education to share here, so I love sharing my story, and so thank you for giving me this opportunity, because I want to use it as an education opportunity right. So when you get diagnosed with breast cancer, you know you could have chemotherapy. You may be a candidate for chemotherapy either before or after surgery. Typically, if you are triple negative breast cancer meaning that you don't have hormone receptor positive breast cancer or the her to expression You'd be triple negative and they want to start you with chemotherapy first to see how your body is going to respond to those drugs before during surgery. In other cases, they may decide to do chemotherapy first to decrease the size of your tumor, to make sure that you could be potentially become a Candidate for a lumpectomy, etc. So there's a lot of reasons why someone might have chemotherapy first. So I think, depending on who you're talking to, you might hear I had surgery followed by chemo, but I also share. It can be the other way around. What we're noticing when we're sharing our stories is that, yes, breast cancer unites us all, but all of us have very unique experiences, and so I was on a variety of chemotherapy drugs and Adrian, my son, cytoxin and tax all was my first regiment and then I had a little bit. I guess it was like the gray area of this her to expression. Now, in 2024, even in 2023, there were big news coming out about what her to low could be, but at the time we didn't have a lot of information on all of the subsets of the her to gene expression. But my doctor thought you know, there's a little bit of expression here, so let's treat it as if it were her to positive. And he gave me a drug called her septum. We paired that with another drug called projecta.

Speaker 2: 17:37

So in the first six months of my diagnosis I was on five different chemo therapies and immunotherapy drugs. My body was absorbing all of this toxicity and lost my hair. What I start laughing about is, like everyone knows you're going to lose hair on the top of your head, that you also lose, like your nose hairs, and so you constantly have this runny nose, yes, right. And then, like you lose your eyelashes. So all these dust particles were like coming into my eyes and I was like, oh my God, even babies are born with eyelashes. I need my eyelashes, do not underestimate your eyelashes, right. And then by the time I lost my eyebrows, I just looked like an alien. So that's a good picture, right there.

Speaker 2: 18:12

Fast forward to the surgery. I had a successful surgery in the sense that there are no complications. But afterwards, when they took out the whole tumor and doing further tests on the pathology, we realized that I did not have a complete response to the five chemotherapy drugs that I was on. So that was a little bit of a setback and slightly devastating, because while they removed the tumor from my lymph nodes and from my from my breast tissue, there were still what they call residual disease floating around. And residual disease are those things that you know you can't really see on a microscope but, like you know, the particles, that kind of like broke off. So I was given an oral chemotherapy called Zalota and I was on Zalota for six months.

Speaker 2: 18:55

Afterwards to what I call this like extra credit, like make sure we're really killing all of the cancer cells that could have been floating around out there. I really feel like I've been through so much treatment that I could relate to a lot of people in terms of what their diagnosis were, the treatments that they were on. My staging was to be so still considered early stage. It, I think, gets the letter B because of the involvement in the lymph nodes and because I am hormonal positive. I am also on hormonal therapies to suppress the estrogen in my body. So I was on let's resolve, which is an aromatics inhibitor, for five years, and I met my five year mark, and then they moved me on to Tamaxifin, which I'll be on for another five years, so ultimately having 10 years of hormonal therapy.

Speaker 1: 19:43

Interesting Mine was her two positive estrogen and progesterone negative.

Speaker 2: 19:49

And.

Speaker 1: 19:49

I did have two different chemo's. Five of the six treatments I had to stop because of a very rare anemia I developed, which is a totally different story, but it came out of the I mean, it was discovered during the cancer. And then I had also the herceptin and progeta for the remainder of the year. But I do remember having people. Some people would say, well, why don't they just get in there and cut that sucker out of there right now and come to find out? That's just not how it works with all cancers.

Speaker 1: 20:18

So it's just very, very complex of what your treatment's going to be according to the kind of cancer you have.

Speaker 2: 20:25

So yeah, interesting, and what?

Speaker 1: 20:27

stage were you? I was two and so I must have been to a. So I didn't understand that at first either, because I was told that if it got to your lymph node I was told that it was more stage three. So I now I know there's a difference between 2a and 2b, but it had not made it to my lymph nodes. But I didn't know that until after my mastectomy and reconstruction. They had gone in there and they did a, an ultrasound, and there was no inflammation and really no indication that it had made it to the lymph node before I even had surgery. But they did pull the lymph nodes, a few from my left side and one from my right side, just to double check.

Speaker 1: 21:06

Right, yeah, yeah, but you know, and then we just go into prevention of lymphedema and so that's a whole another ball of wax that you have to learn about, absolutely. What is your survivorship like? First of all, you have surviving breast cancer dot org, and that is a huge part of your survivorship. Can you tell us how that was born and how that's evolved? I guess over time. Yeah, yeah, absolutely.

Speaker 2: 21:31

My parents came to visit me when I was going through surgery. They're out of state, they're not in Boston, but they came to Boston to support me and Boston real estate in Boston is small so I couldn't host them at my condo so they ended up getting an Airbnb down the street. I just remember the nights before, while I'm recovering and everything. They were there and we were just sitting in the living room with this Airbnb and I'm like now, what Do I just go back to work? I was on FMLA. I had time to really reflect and heal, not just physically, but I think that's really when the emotional trauma was hitting you, because when you're going through chemotherapy or the month of radiation, you're just like OK, go, go, go. But then when the treatment kind of stops, you're like ugh, I just went through something quite severe. To even say the word cancer out loud took a lot of time to roll off the tongue, if you will. Even trying to tell people that I have cancer. I couldn't say the word. I would just start crying and really reflecting. And it doesn't have to be cancer, but just any sort of life experience when you're like OK, really, what is the purpose of my life, what am I meant to be doing, what is impactful and what else is out there? So during the 12 weeks that I was on FMLA, I'm definitely a workaholic by nature and so it was not easy for me to not work, but even after my surgeries I would take walks around the neighborhood After the radiation cycles. I would just try and share my experience through like two videos and kind of vlogging about my cancer experience, if you will. Everyone was asking friends and family we're like are you going to start a blog? Because we want to keep updated on your status and how you're doing. But we don't want to bombard you with emails and phone calls, which I appreciate, because then you're just telling the same story over and over again, and at the time I knew I wouldn't have the energy to write prolifically the way I would want to. But I can pick up my iPhone and do a selfie video very amateur and then post that on a YouTube video site For friends and family to watch.

Speaker 2: 23:27

What I did not realize was, through doing those videos, people started to follow me, not just friends and family, but people were really interested in what I was going through, seeing what it was like to go through my first infusion or cutting off my hair first and then losing my hair the day before my surgery. What was going through my head? I was just recording all of these very personal vlogs on YouTube and I didn't know what I was doing. I was just sharing my information out there.

Speaker 2: 23:52

And I remember one time and I have this really terrible port scar right here. It never healed really well, but I do have one too. It never healed really well, but it got infected. But I remember doing this video and I was like, oh yeah, I got my port placed today and I said it was going to be a little red and, as you can see, it's red, but I think it's healing just fine. And someone on YouTube put in the comments no girl, that's infected, you better contact your doctor. And I'm like, oh OK, thank you. Thank you for telling me that. So, yes, it was infected, I had to get it removed and cleaned and a whole bunch of drama and other story.

Speaker 2: 24:25

But this is the long-winded way of just saying I just started producing content and then, when I was talking to my parents in this Airbnb, I was like what do I do next? What's the next phase and why don't we start a nonprofit. What if there's this community that we could build, this community that I wish I had when I was going through my diagnosis and creating a place for people to get information in layman's terms, in relatable terms, nothing overedited or mastermind or anything, just like the real and the raw was really how it started. So we kind of looked around the room we were like, do you all want to be on my board to start? And went through all the paperwork to go figure out how to form a 501c3. And survivingbrestcancerorg was born.

Speaker 1: 25:10

Well, lucky us out there. I actually just applied, for somebody told me I needed to do a nonprofit, but I don't have nearly what you have going on. I'm always looking at websites and resources like yours, which is amazing. My biggest thing is that I need help paying for running a podcast. As you know, you have to pay for all the platforms and things like that and it takes a lot of work. But somebody had suggested that I do that because eventually I do want to be able to have other stories and I do want to be able to house resources like survivingbrestcancerorg in there so that people know where to go.

Speaker 1: 25:51

That's my ultimate goal is to sort of take all of the resources that I have found very, very helpful again, such as yours, and housing it on my website and so that there's more exposure for you and people can learn just so much from that website itself. And I want stories and I want people to be able to see pictures of me, as you did. I had a private Facebook group that I had a lot of people following, and they still are, but I videoed all kinds of things. I went live and helped people understand what was going on throughout the whole entire journey again because I didn't really want to repeat it a million times. So it's like, if you want to hear what's going on, come over there or Caringbridge, you know, because yes, but thank goodness for that person on YouTube who commented about your part. I know, I know, definitely not.

Speaker 2: 26:43

Saber though.

Speaker 1: 26:44

Yeah, definitely. It's like the purpose of it was sort of twofold there. And I do want to say it's so interesting because whenever I talk to survivors there's so many parallels to stories in that for me, my podcast was born a year. Well, the idea was born a year ago, literally, because I was cancer-free December 13, 2022. And then I had my thoracic surgery to get this big thymoma tumor out. It was like five weeks later and come February I was noticing that my life was just sort of what am I doing? Because I had just retired when I got breast cancer. I retired and one week later I had breast cancer. So my first year of retirement was absolutely so different than what I had expected and by the time I was cancer-free, my husband had already been retired for a year and a half and I felt like I didn't have any significance because, like you, I was a total workaholic.

Speaker 1: 27:40

I had a million things going on before breast cancer and so to retire, I was like I'm going to retire and to have all these ideas in mind of what I could do, like travel and all these things, and then have breast cancer and live it completely different. When February came around, I felt like I had zero significance, no purpose, and I was like what the heck am I gonna do with my life? Yeah, that really, truly is. I knew that I wanted to educate breast cancer patients and people who have never been diagnosed, and that's where Tessos breast was born and, yeah, my husband gave it the name because, when it all comes down to it, early sections when it's at right, and so I launched it literally on my one-year anniversary of the diagnosis. Oh, wow.

Speaker 1: 28:23

So yeah, and I'm sure, like you're surviving, you know you're surviving. Breast cancer org organization is probably a huge healing mechanism for you as well. We talk about it. It's so therapeutic, but then you also get to make great friends that you never thought that you would ever even have people that you've never even met in person, and it's a real silver lining right there. Yeah, I totally agree.

Speaker 2: 28:50

It's definitely therapeutic. Even playing around with like my website I'm constantly changing like the home page, or like playing around with the fonts, and William, my husband, says this is your therapy. You know, you're going on there, you're connecting, you're helping people, and I think there's just no better gift. Maybe it just comes with like wisdom and age, I don't know, but to be able to help people is just so motivating.

Speaker 1: 29:12

Yeah, and I like how your husband recognizes that. Were you both married at the time? No, but we were dating at the time, Okay. So how was he as a caregiver?

Speaker 2: 29:23

He was phenomenal.

Speaker 1: 29:24

He was phenomenal.

Speaker 2: 29:25

He never missed a doctor's appointment. He came to every single doctor's appointment. Like I said, this was pre-COVID and he was such a great advocate. He would sit in there with a doctor and he'd pretend to be on his phone and like the doctor would be asking me questions how am I feeling? Or how am I tolerating the chemo's, etc.

Speaker 2: 29:40

And you know, you don't really feel empowered when you're like half naked and a Johnny sitting on a bed. Let's be real, I know right, and like all I'm thinking is like I want to get out of here, like I'm fine, I'm fine. Yeah, there's nausea, but like what can we do? But William was like alright, doctor, let me tell you how she really is, because he was with me at home. He saw how miserable I was and how the side effects were really impacting my quality of life, and so he was just such a supporter and huge advocate and loved me, no matter what with or without breasts or anything that we were going through. Obviously it's not something he signed up for when he started dating me, but we've been together for a very long time and he came with me through cancer and we actually just got married August of 23. So we're still kind of in the newlywed phase oh well, congratulations.

Speaker 1: 30:26

That's pretty amazing, I was gonna say, because I told my husband when I got the cancer I was so upset and so angry and all the things, like all the things, and I had literally told him I said you didn't sign up for this. And then I realized, oh, yes, you did, because you're sick and in health, right, you're your boyfriend. And then to husband, like yes, he went all through that with you and still married you and that shows the profound love that he has for you. Oh, that just makes me cry. Thank you, oh, I love that. I'm just super teary eyed right now. That just gave me good goosebumps, yeah.

Speaker 2: 31:02

Well, I think part of it too is to show and let people know like life continues. You can still have relationships, you can still get married. That was part of it too.

Speaker 1: 31:09

Oh, I just love it. I'm so happy for you. Thank you In your survivingbreastcancerorg. What are some of the most amazing things that you think are in there that you just want people to see?

Speaker 2: 31:21

Oh gosh, we do a lot and it's it always like hits me when I'm doing our like end of your impact report or talking to people about what we do. So if you hop on over to survivingbreastcancerorg, I hope you don't feel too overwhelmed. But a couple of things that I can share. Our goal really is to provide education, community and support. Like those are the three pillars that we are founded on, and my background is in education. I actually still work in education as my day job.

Speaker 1: 31:47

Same, I just want to let you know.

Speaker 2: 31:48

Yes, on similarities, I love it, yeah, and then you know, just doing the podcast or doing the nonprofit work is, you know, a labor of love. So we support those diagnosed with breast cancer and their caregivers through all stages of breast cancer and all subtypes of breast cancer. So whether you're stage zero or early stage, like one, two or three, or living with metastatic disease, we have programs and services to support you, regardless of those stages. I share that because there's a lot of great organizations out there that are laser focused on a particular subset. So if you're, if you're living with, like metastatic disease, for example, a great organization is called Project Life, for example, and they work specifically with people who are living with terminal breast cancer. So there's just like different needs.

Speaker 2: 32:32

I share this with surviving breast cancer isn't like the surviving phase, right, it's not like the past tense or the future tense. It's like this is what we're doing now, in the present. We're surviving our diagnosis, and so we want to be encompassing to all stages and subtypes. We offer a variety of programming that is absolutely free to anyone who signs up, ranging from expressive writing classes to art therapy classes. We have like open mic, poetry nights. We do support groups, we have yoga classes, we have one of our newest programs. It's an eight week program called Encourage and Empower.

Speaker 2: 33:05

So if you've been diagnosed with breast cancer and you're in your first year of that diagnosis, we have a program for you where you'll kind of be placed in a cohort with other people diagnosed at that same time frame, because you guys are probably going through the same types of decision making and treatment plans. So we want to build that cohort in camaraderie. We provide and produce a lot of content. So, jamie, as you know, you're always getting emails from us, from our weekly Monday newsletters to blogs that we produce, to our podcast that we produce breast cancer conversations. We host webinar series. Bring in the experts to talk about the hot topics that you are community members are asking us, and so I really just say, like you guys are the experts and leverage us as a nonprofit, and we'll go out and fundraise and then build the programs and services that you guys are requesting.

Speaker 1: 33:51

Yeah, brilliant, brilliant. I love that you have the cohort, because you know if people know about that and they are able to go through this journey or whatever you want to call it Together and making decisions together and being able to bounce things off of each other, because the people on the outside like your friends and all those people. They can be there to support you, but not in the way that a cohort like that can support, and people like you who are running them, and coaches or whoever's out there to help people get through it. I think that's super brilliant. So do you find it pretty easy for people out there in our community, and at large anyway, are really eager to support organizations like yours?

Speaker 1: 34:38

Support in what sense, like get involved or get involved, donate whatever, however, just to make sure, because they're so invested. I know that there are some people who are just so interested in making sure that nonprofits are, you know, supported, and because of the amazing content that you have, thank you.

Speaker 2: 34:56

Yeah, you know I didn't grow up wanting to start a nonprofit or be an executive director of a nonprofit. That was not in the cards or the dream. So I don't come to this with like the know how that you know someone who would go to school to like start a known business per se. I don't have a formal business education background or fundraising background, so a lot of this is like trial by error and learning. I do say yes, there's absolutely community out there who want to support the work that we're doing, and it's not necessarily always in dollars. It could just be donating one's time to like help support our programs.

Speaker 2: 35:31

As an nonprofit, we rely heavily on our volunteers to make us thrive and so there's always plenty of work to do.

Speaker 2: 35:38

One of the phrases I tell anyone who's joining us and even students who are looking for like internships or capstone projects you know we work with a variety of people to help get the day to day done.

Speaker 2: 35:48

But I say cancer is stressful enough and so if you join the team like we're stress free, what we do on the day to day should not be stressful, because cancer is stressful enough and the moment that it is and I tell myself this and I tell William this because we talk about breast cancer all the time, because we live together, we're husband and wife, we run the organization, and so I'm literally breakfast, lunch and dinner, and even in the middle of the night I'm like hey, I got an idea. Like hey, what do you think about this? Like we're constantly talking about it. But the moment it becomes like non fun, the moment that we start stressing about finances or you know how we're going to pay the contractors, or what about this? Or even some of the FOMO like oh, look, how great that organization is doing. Like why can't we be like that All the same? That happened like on an individual level can happen at the company level as well. And so I just want to say, like we're not there to reinvent the wheel.

Speaker 1: 36:30

We want to support and provide the support and resources that we offer without stepping on other organizations toes, and we love what we do Well and I like your mission, that and your philosophy on how it should be as you were working it. Because, yes, just podcasting sometimes can be stressful and I always told myself the minute it becomes too stressful I mean, I was a teacher for middle and high school for 20 years and that's very stressful and when I retired I wanted to just do things. Hey, I just got an email from you. Oh, I love that automation. I just looked at it I was like, hey, I see that I love that automation too. Can we talk a little bit as we wrap up about your podcast breast cancer conversations? How long have you been doing that and what's that like for you?

Speaker 2: 37:19

Yes, oh, it's a lot of work. I'm not going to lie. I'm sure you know running a podcast. So I started the podcast in 2018, just as another modality to get information out to people, so they can come to our website and read a blog and get information about breast cancer and they can just be an IP address Like I never know that they're there. They could get support and information by attending our webinars or attending one of our support groups, so like virtual, in person, if you will engagement. So then it just made a natural sense if they wanted to like watch something, they have my YouTube channel, but if they wanted to hear something, like there was a void. So it just made natural sense to want to go and produce a podcast so that people who wanted to absorb content through listening they had that modality as well. So really just trying to provide the education and variety of formats so that people can get the information they need when they need it.

Speaker 1: 38:06

Yeah, and the nice thing about a podcast is that people don't really I mean, my first two episodes tell who I am and what my diagnosis was, who I was before breast cancer, so my audience can understand that part of it. But then I sprinkle my story in other. You know as we're talking. But the nice thing is is that people can go to your podcast and you can kind of flip through and say, oh, oh, this is about reconstruction or this is about chemotherapy or whatever, and they can just sort of listen to that one.

Speaker 1: 38:36

So it's not linear, in other words, and so you don't have to like, it's not like a book you start at the very beginning and then you have to go to the very end, because it can get a little overwhelming for people, especially when you release weekly, which is what I do as well. So, yeah, I think that I really, really love the podcasting. It's my favorite to talk to people like you and get to know other people's stories, and it is a lot of work, but I love it so much and I don't want to stop. So well, I think it's great that you have all of those things. You obviously work really hard. I want to let you know that I do have a YouTube channel that I finally started, so I actually do upload it releases to YouTube and it has my logo on there, but I also upload the video, is that?

Speaker 2: 39:20

okay with you. Oh, this video.

Speaker 1: 39:21

Yep.

Speaker 2: 39:24

Oh, I should have asked Okay, because I prefaced all of this. So so your listeners know I have a cold, so I'm not looking at my best or sounding my best, but absolutely, I am all about being raw and authentic. Please feel free to share.

Speaker 1: 39:36

Okay, well, to me you look great. I would never have known that you actually have a cold, so you look really good. I don't know what you look like when you think you look good, because you look good now. You're very kind.

Speaker 2: 39:47

You know you're not feeling your best.

Speaker 1: 39:49

So we're all human beings and we're having a conversation. Whether I have a UTI, just FYI, have a UTI and so I'm not. Yeah, I tell the good, the bad, the ugly, and I've probably looked I don't know a lot better or whatever on mine, just because sometimes people like to see who's talking. Absolutely, but I just really appreciate your being here. I do have in the show notes all the ways that people can get a hold of you on Instagram and Facebook and Twitter. And is it called Twitter anymore? I still call it Twitter, you do. I mean, I haven't been on there in so long. X doesn't resonate.

Speaker 2: 40:25

No, it's really kind of strange isn't it?

Speaker 1: 40:26

Yeah, and then also your website, survivingbreastcancerorg. Well, you also have your podcast link on there, your blog and events, which is really nice, so people can just click right on there. Okay, well, I just really appreciate your being here, even though you're not feeling so great. Is there anything else you'd like to leave us with?

Speaker 2: 40:48

No, this has been a lot of fun, jamie, I'm so honored that we can connect this way, that I can be a guest on your show, that we can share each other's stories and just continue to support each other in the great work we're doing.

Speaker 1: 40:57

I love it. Thank you, laura. I appreciate it and I hope you feel better and to my audience, thank you so much for joining us again on this episode of Test those Breasts and we will see you next time. 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.