Episode 091: Thriving Through Cancer with Alyssa Carrie and Katie Leadbetter
In this episode, I’m joined by frequent guest (she’s been a guest here on the show more than anyone else) and friend of the program Katie Leadbetter and Alyssa Carrie.
Katie and Alyssa are both certified holistic Nutrition Consultants, 21-Day Sugar Detox Coaches, and they’re both very young cancer survivors.
Katie was on the show last October, specifically in Episodes 056, 057 and 058, sharing her experience of surviving stage 2B Invasive Ductal Carcinoma Breast Cancer which she has been in remission for almost five years.
Alyssa was diagnosed with Lymphoma a year ago at the age of 26 and thankfully is also in remission.
In this episode, you’ll hear:
Alyssa share her cancer story for the very first time. She shares how vital the Ketogenic diet was in her healing, as well as how she partnered with her oncologist to trace her steps to identify the root cause of her cancer.
You’ll also hear them both share how important self-care and personal growth was during their respective treatments
What went well during their treatments and what they found lacking
And how they’re filling that gap for cancer patients by collaborating on a new program they’ve created that launches in just a few weeks called, “The Cancer Survivor’s Course.”
It takes a special kind of vulnerability to share such personal experiences and I’m grateful that these women are brave enough to do so.
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Naomi Nakamura: Hello there, and welcome back to the Live FAB Life Podcast. I'm your host, Naomi Nakamura, and on this episode I have not one, but two guests. Joining me is a frequent guest, she's been a guest here on the show more than anyone else. She is my very good friend, Katie Leadbetter. And today she's being joined by another friend of ours, Alyssa Carrie. So Katie and Alyssa are both certified holistic nutrition consultants, 21-Day Sugar Detox Coaches, in fact that's how we all met, and they're both very young cancer survivors. Katie was on the show last October specifically in Episodes 056, 057, and 058, and she shared her experience surviving stage 2B Invasive Ductal Carcinoma Breast Cancer, which she has been in intermission from for almost five years. Alyssa was diagnosed with Lymphoma a year ago at the tender age of 26, and thankfully she's also in remission.
So in this episode you're going to hear Alyssa share her cancer story for the very first time, and she shares how vital the ketogenic diet was in her healing, as well as how she partnered with her oncologist to trace her steps back to identify the root cause of her cancer, and there's a whole lot more that she shares about her story that's just really compelling to hear. You'll also hear both of them share how important self care and personal growth was during their respective treatments, and they also talk about what went well and what they found lacking in their treatments, and how they go about filling that gap for people who are currently facing cancer by collaborating with each other on a new program that they've created that launches in just a couple of weeks called A Cancer Survivor's Course.
I for one am very proud of them for bringing their education and their professional background, and most importantly their life experiences, together to just pay it forward and help others who are facing cancer like they did. I think it takes a special kind of vulnerability to share such deeply personal experiences, and I for one am very grateful that these women are brave enough to do so. So without further ado, let's get to the show.
Hi ladies, welcome to the show!
Katie Leadbetter: Thanks for having me.
Alyssa Carrie: Thanks for having us.
Naomi Nakamura: I'm so excited, this is the first time I've had two guests on one episode, so we will see how this works out. But for listeners, you may recognize Katie Ledbetter. This is, what, your like, I don't know, 10th, 11th, 20th time on the show.
Katie Leadbetter: Like maybe fifth.
Naomi Nakamura: Yeah, Katie's our frequent guest on the show, and we're excited to have her back. And we have Alyssa with us, who's, this is her first time being on the show. I invited them on because they both have very compelling stories in their health journey, and they've come together to collaborate to put together an offering that I think is so important and so valuable and so needed in this world, so I'm going to let them share what it is. But before we get started, why don't we just have you ladies introduce yourselves. And Katie, you've been on many times, you've introduced yourself, but why don't you just give us a high-level of who you are, and a little bit of your story, and then we can refer people back to the episodes that you're on, that you really did share all the details of your story.
Katie Leadbetter: All right, I'm Katie Leadbetter. Clean Eating With Katie is my Instagram and my website. I'm a nutrition consultant of 21-Day Sugar Detox Coaches, which is how the three of us met, and I am a breast cancer survivor.
At age 31 I was diagnosed with State 2B invasive ductal carcinoma, and I had just started nutrition school at that point in time. So everyone had told me, "I can't believe this is happening to you, you're one of the healthiest people I know," and I was also shocked, just like they were. But I do have a strong family history of breast cancer.
So I went through six rounds of chemotherapy, and then I had a full mastectomy, and then I had 25 days of radiation from 2014 to 2015. I've been in remission since then, and December will be my official five-year cancer remission-versary. It's a big deal for triple negative breast cancer, because that is one with the most likely chance of breast cancer coming back in those first five years, in that window. I also have BRCA-1 mutation, so that's kind of helped to plan the course of treatment, because of the likelihood of breast cancer and other cancers coming back. So that's kind of in a nutshell my cancer history.
Naomi Nakamura: I had you on last October, because October is Breast Cancer Awareness Month, and we did a whole series, we did three episodes, where you really really got into the details of your story. So if you listeners have not heard that yet, you want to go back and listen to Episodes 056, 057, and 058.
And before we get to Alyssa, I just like to joke around and call us the book club. Because like Katie said, actually the three of us are 21-Day Sugar Detox Coaches, and that's how we met, but we all live in the San Francisco bay area in different parts, but I feel like we all get together every time one of our favorite authors have a book signing in San Francisco, and that's when we see each other.
Katie Leadbetter: It's so true.
Naomi Nakamura: Alyssa, you haven't been on the show before, and you haven't had the chance to share your story, so I'd love for you to really share yours and what you've gone through in the past year.
Alyssa Carrie: Yeah. It's actually kind of funny, because before when I was diagnosed and had symptoms, I was actually recording my meals and thoughts of the day, journaling, and I actually have a quote that I wrote down, and it said, "I'm extremely tired and not sure if I've ever felt this mental and physical exhaustion before," end quote. So that was pretty significant, because like a lot of people out there, as a type, always go, go, go, nothing phased me. I thought I was tired because I'd just come back from traveling in Europe with my boyfriend. We were gone for like three and a half weeks. So when you're traveling you're go, go, go, but three days into traveling I actually got sick. I had a fever for a couple of days, but at the time I was like, I'm sick and I'm traveling, I'm not going to back off, so I just powered through it, so I just thought I was recovering from that sickness.
That's when, two days later, after I wrote that journal entry, two days later is when I woke up with a huge mass on my neck, kind of by my clavicle. It's your lymph node on your neck. It was so big, you could basically take a softball, cut it in half, stick it on my neck, that's how big it was. And it just boom, popped up overnight on July 18th. Which is actually kind of funny, because we're recording this in July, so it's kind of like my one year.
So I work at a health and fitness club in Nevada, so there's a lot of fitness and health-minded people there, and everyone was telling me, "This is probably this or probably that," and it's, "Your lymph nodes are stagnant" or whatever. But I ended up going to urgent care, and they sent me straight to the ER to get imaging and testing because they don't have that type of testing in, at least, urgent cares around me. So I was there for 18 hours by myself, I had three different scans, they messed up on the first one, and so many vials of blood that I lost count. They later discharged me saying that everything looks fine, but I was super young and healthy. I was hearing this throughout my whole cancer journey, that I was so young and healthy.
Naomi Nakamura: Just so listeners understand, how old are you?
Alyssa Carrie: I was 26 at the time.
Naomi Nakamura: Exactly, very young.
Alyssa Carrie: Yeah. A little baby bird. And I was definitely in my peak for nutrition and fitness, I was definitely at my peak fitness level of my life. I was training to compete nationally as an Olympic weight lifter, so everything I did revolved around training, the way I ate, the way I slept, everything. So I was in really good shape too.
Naomi Nakamura: And just for context, both you and Katie went to Bauman College, right, so your lifestyle and your approach were very similar.
Alyssa Carrie: Correct, yeah. When my coworkers found the lump on my neck he originally thought that I had torn something in my tracks or something, because I had muscles that showed, and he was just like, "What is that?" He was lost for words, because it was just so weird. And we took a picture of me, we were just like, "We have no idea what this is." So I got sent home from the hospital with a referral to get biopsied, just to see what was going on. Two weeks go by, and that huge mass is still there, it might have gotten a little bit bigger, but I was still feeling really tired. I was having B symptoms, which I didn't know at the time, but B symptoms for the type of cancer that I had are low-grade fever, night sweats, fatigue, and weight loss. I actually wasn't experiencing weight loss at that time, that happened later.
Naomi Nakamura: And all those things are pretty ...
Alyssa Carrie: They're pretty common, right, yeah.
Naomi Nakamura: Yeah, they're pretty common, that you wouldn't fairly think ... I mean other than the weight loss, I would be like, "I'm just not feeling well."
Alyssa Carrie: Right, exactly, and that's kind of what was going through my mind, and how quote-unquote healthy I was. It just didn't come to mind. So I requested my results from the blood be sent to me, because I was still feeling really tired, and nothing was improving. I actually didn't have insurance at the time, so no doctor, like a specialist, would see me, so I was working on getting insurance at the time too.
Naomi Nakamura: Oh my gosh, that could be a whole other episode.
Alyssa Carrie: Yeah, oh man, right, a whole other episode. So I requested to see my blood tests so I could look at them, and it took them, from when I asked to get back to me, it was three and a half weeks, so it took a long time to get to me. But when I was looking at it, all my blood levels were literally off the charts. There might have been one or two out of, I don't know, 50 different tests that they ran. So I brought it to my nurse practitioner, she's my primary, and I finally got insurance figured out, and she scheduled for me to see a blood specialist. I emphasize blood specialist because I had no idea what this meant. I was 26, I was on a whole different page. I knew nothing about what was about to happen. So I scheduled to see this blood specialist after my Canada slash Disneyland trip.
Naomi Nakamura: And that was all based upon your lab results, that she went in that direction?
Alyssa Carrie: Yeah, because I was like, something is not right here, and the ER just let me go and I was like, I don't know, I think in my cut something was just like, there's something else happening. So I didn't want to mess up anything with my going to Canada with my mom and grandma, I call us three gens. We like to go on trips together. Then I went straight from Canada. That was a week, nine days, and I went straight from Canada to Disneyland for a bachelorette party. And all of this time I was experiencing those terrible cancer side effects and had no idea what was going on.
Then it was September 7th, I was done with all my trips, when I went to see the blood specialist. I drove up, and big huge words across the building that said "Cancer Center." I was just like ... I don't even remember really, but I was just hit with shock, like why am I here?
Naomi Nakamura: They didn't tell you that the doctor was at a-
Alyssa Carrie: No.
Naomi Nakamura: Oh wow.
Alyssa Carrie: So I was just like, boom, smack, hit a brick wall. I was just, probably the person I'm seeing just works here. I'm just trying to put positive thoughts in and that way.
Naomi Nakamura: And you're by yourself?
Alyssa Carrie: Yeah, by myself.
Naomi Nakamura: Wow.
Alyssa Carrie: Pretty much, I sat down ... She was super super sweet, and she basically was like, "I don't even have to look at the biopsy that I'd gotten." She was like, "From your test results, from the ER, and your scans you had, you have cancer." And I was just like, "What?" That was the first time that I had heard those words, and that was pretty terrible.
Naomi Nakamura: Wow, she just came out and said it.
Alyssa Carrie: Yeah, she was like full force, which was...
Naomi Nakamura: By yourself, with nobody there with you, and you had to drive home by ... Wow.
Alyssa Carrie: Yeah. So I don't even remember if I went straight home after that, I don't even remember, but it was just crazy that she determined that off of the results that the ER said that I was fine. So I really always advocate for people to really keep digging. If you feel something is wrong, you keep fighting for yourself, because no one else is going to fight like you will.
Naomi Nakamura: Yeah, you have to be your own advocate.
Alyssa Carrie: Right, and so at this point that was already two months after I had found a mass on my neck. The mass was still there and it didn't go down. So this was all in September, so that's when everything started picking up. I had 17 doctor visits in September, so it was pretty crazy within getting my PET CT, which was to determine the stage that I was in, if it had spread since my first scan.
Naomi Nakamura: Was that blood specialist also your oncologist?
Alyssa Carrie: She could've been, but she wanted me to go to UCSF.
Naomi Nakamura: In the city?
Alyssa Carrie: In San Francisco, yeah. Because she thought, because I was so, quote, young and healthy otherwise, if they had something kind of new and upfront, that they could give that to me, especially because I don't have any children, and kind of that whole aspect of fertility. But in the end, nothing was different. If I went to her, to UCSF. So the PET CT did determine that it had spread. It was in my neck, and it was kind of in my center of my chest, down my esophagus into my sternum, and it had spread to underneath my armpit. And this was all on y left side. So it didn't change, my chemo treatment, because of my B symptoms, the fatigue, fever, and the night sweats, so that was, I get, bittersweet that my plan didn't change, but it was kind of scary to feel that it had already spread. My doctor was really vigilant on, okay let's start chemo pretty quickly.
Naomi Nakamura: Just to clarify, what are B symptoms? What do they mean by that?
Alyssa Carrie: There's basically A symptoms, which you don't really have in my specific ... For lymphoma there's A symptom and B symptom, and A symptom, basically you don't present, what B symptom is. The B symptoms are fever, fatigue, night sweats, kind of a rash over your entire body, I did not get that, and extreme weight loss, which I did not get.
Naomi Nakamura: Are B symptoms unique to lymphoma, or Katie, did you experience similar things with breast cancer?
Katie Leadbetter: I did not, I've never heard of this before. I think it's probably unique to lymphoma, but there are some ... Weight loss is a common answer.
Naomi Nakamura: But in terms of A symptoms and B symptoms?
Katie Leadbetter: Yeah, no.
Alyssa Carrie: I think that's kind of particular to mine. At least when I looked it up. Dr. Google.
Naomi Nakamura: Yeah, you've got to know everything right, when you're living it.
Alyssa Carrie: Yeah.
Katie Ledbetter: Yeah, you go to cancer college.
Alyssa Carrie: Yes. We definitely get smacked into that university. So at the time I was also living in a 22-foot trailer on property, because I really wanted to live the ranch life.
Naomi Nakamura: You were doing the tiny house thing, I remember that.
Alyssa Carrie: Yeah, I was. And with my six-something, 230 pound boyfriend, we were sleeping in a twin sized bed. It was a lot of fun, but we decided that probably wasn't the best place for me to be going through treatment, so we ended up moving back with my parents. They just lived 15 minutes away. It wasn't that bad. Plus the trailer was pretty old, and there was possible mold exposure, so you don't want any extra chemicals exposed to you, you need to be as clean and sterile as possible going through chemo. Which I started on October 10th. My treatment was every other week, and I had four different chemos. The acronym is ABVD. I'm pretty sure, Katie, you had some of those, didn't you?
Katie Leadbetter: What's the A stand for, adriamycin?
Alyssa Carrie: Yeah. And B, bleomycin-
Katie Leadbetter: I had ACT, adriamycin, Cytoxan, and Taxotere.
Naomi Nakamura: Just for timeline, you first went in in July, and then you got your diagnosis in September, although you were traveling during that time as well, and then you started treatment in October.
Alyssa Carrie: Yeah, October. So a long time has passed, pretty much. In cancer realms, it moves very quickly. So my treatments were every other week, and we would leave around 8:00 AM, and I'd get home around 5:00 PM, and that's mystery because I was commuting to the city about an hour and a half, two hours. But on my way home I would always be super exhausted, I would sleep pretty much the whole way. Toothpicks couldn't hold my eyes open, I was just so exhausted. I remember saying this, as that couldn't even scroll through Instagram because I was so tired. And keep this in mind, for some later interestings on how I helped heal myself, I was eating for Health Model at the time, pretty good, and I thought that I was going to be in remission for my next PET-CT, which was two full months of treatment. I did a total of six months. And at that time I was not in remission, and it just tore me apart. I was basically blaming myself, like what did I do, why aren't I in remission.
And I started going down this rabbit hole, and I started doing a lot of research, and I stumbled upon a theory by Otto Warburg, and it is now coined as the Warburg effect, and how cells and their mitochondria are damaged, and that kind of leads into the cancer realm. So I started researching all things keto, and then the last sign that hit me, I hate following trends. So if someone's doing keto for example, I don't want to do it. It's just my personality.
Katie Leadbetter: I'm the same way.
Alyssa Carrie: I had done all this research and everything saying "Keto and cancer, Keto and cancer," and finally the last sign that hit me was, Diane Sanfilippo, she would come and visit me on some of my treatments, and this time she brought me a gift. A few gifts, but one of them was her book that was coming out in a month or two called Keto Quick Start. It just hit me like a ton of bricks I was just like ... She left and I was flipping through it, and something just sparked in me, and I started reading, I read the whole book, and so by the time, it was three days before my next treatment, I started eating full keto. Not just dipping my toes in, just full, boom, went for it.
So my downtime decreased from 10 to eight days after chemotherapy to three days. I would even go on walks when I got home after chemo, when before I told you I'd fall asleep and I couldn't do anything. I was eating dinner with my family again. This was so significant. So my energy was coming back, I had less chemo brain fog. Where before I remember I was walking to go get broccoli, and I had to stop three times from the front of the store to the broccoli to stop myself and be like, "Where am I going?" And either look at my list or ask my boyfriend, "What are we doing?"
Naomi Nakamura: I just want to point out, and total selfish here, but I just did an episode that came out this past week ... Let's see, we're recording this right now on July 3rd. I had an episode come out on July 1st, I think it was episode 89, talking about the differences between dieting, and food as medicine, and using nutritional therapy, and I think what you just shared is the perfect example for that. Because as we know, keto is this huge trend right now, and so many people are doing it for so many different reasons, but in this case what you just shared is that it really was part of your healing journey.
Alyssa Carrie: Yeah. It really proved to be true for me. And I'm a person that, I need facts like that. I mean three days, and then I had my next treatment, and just that short amount of time, I had those benefits hit me so quickly that ... Nothing really happens that fast, and I was just like, whoa.
Naomi Nakamura: What were the major differences between keto and how you were eating before? Because I can't imagine, you were probably eating real food, what we would all consider healthy, so what were the significant tweaks that you made?
Alyssa Carrie: I was eating a lot more carbohydrates, and I couldn't really stomach anything except for carbohydrates. In my mind everything else just made me feel like I was going to be sick.
Naomi Nakamura: And what were your carbohydrates that you were eating?
Alyssa Carrie: Mostly, a lot of fruit, a lot of rice and potatoes, and kind of more dense carbohydrates.
Naomi Nakamura: So we're not talking heavy pastas?
Alyssa Carrie: We're not talking [crosstalk 00:21:07], no, no, no.
Naomi Nakamura: Yeah, but still, real food, whole food, healthy.
Alyssa Carrie: Yeah, totally.
Naomi Nakamura: But that shift in that macronutrients made a difference.
Alyssa Carrie: Huge difference. I was just so blown away that I started Instagramming it on my stories, and I saved it to my highlights, called cancer part one and cancer part two, because I kind of go through everything. Because I was just amazed at my results. And I had two more months of chemotherapy, and that was the rest of my treatment, was like this. So it was a huge, huge turnaround.
My next PET-CT was in February. It was a few days or a week before my birthday, my 27th birthday, and I was just scared out of my mind because of what happened last time, but this time my doctor emailed me five hours after my test results and said that I was in remission. And that was just the best feeling in the world.
So I also think having these different dietary changes really helped in physically, what I looked like. I would have people come up to me and be like, "You don't even look like you're going through cancer." And I don't know if this is from what exactly I was doing, because there's not research around it, or my genetics, or what it is, but I didn't lose all my hair. My hair was thinning at 80-years-old woman status, kind of. I had my eyebrows, they were kind of pencil thin, but they were definitely there. I had my eyelashes.
I initially did cut my hair, after my diagnosis, to my shoulders, but I didn't cut my hair until after this PET-CT scan when I was already deemed in remission. So I had already been through treatment for four months. My hair was just getting a little straw-like and scraggly, and it was making me more upset to see that, so then I buzzed my head, but it actually looked fine. It was just like "What in the world". I was going to be Furiosa from Mad Max for Halloween, and I had a full head of hair at the time, and I was like well, there goes that plan. So I still to this day stump my oncologist. She said that she's never had someone have so much hair before. So that's also something that was pretty significant for me too.
Naomi Nakamura: You also did some CBD stuff too, right?
Alyssa Carrie: Yeah, I did. I was using CBD and THC. I started doing that after a full month of treatment, where I had three different pills that they'd send me home for to combat the side effects of chemotherapy, and then two pills to combat the side effects of the pills that I was taking. So it was five different pills, and they were giving me all terrible side effects, and one of them is, I wasn't eating. I initially lost 30 pounds, which was pretty crazy, and a whole host of other things. Then someone was like, "Have you tried CBD or THC," and I was like huh, no I haven't. I basically dosed those first thing in the morning, because that was the hardest for me, was getting up and just feeling terrible. So as soon as I could get some THC specifically, was more instant, CBD is kind of longer term throughout the day, and I could go about my day pretty well after that. So I would do that twice a day.
Naomi Nakamura: I did do an episode with a doctor who specializes in CBD, THC. She's an integrative doctor, as part of her treatment. I'll link to that episode in the show notes, but just wanted to point that out, because that's pretty significant. Alyssa Carrie: Yeah, so I got rid of all five of those pills, and I didn't even gradually switch over. I just boom, switched over one day, and I just used CBD and THC for the next five months.
Naomi Nakamura: Out of curiosity, what was your doctor's reaction to that?
Alyssa Carrie: They didn't really care. It was kind of interesting, because I was pretty nervous to bring it up, but they were just like, "Okay, sure." It was very relaxing to get that.
Naomi Nakamura: I was going to say, I appreciate that.
Alyssa Carrie: Yeah, I really appreciate that.
Naomi Nakamura: I appreciate that kind of a respect from your physician.
Alyssa Carrie: Yeah. I did have, all my doctors and nurses and their helpers were all kind of on the younger scale, so I don't know if that helps, but I have had doctors who were a couple of generations older than me being like, "You probably shouldn't do that." But it was really nice hearing from my oncologist that she kind of just-
Naomi Nakamura: Trusted you.
Alyssa Carrie: Yeah, exactly. So that was nice, especially given some things that I'll tell you later that I didn't really care for. That was pretty much my cancer, chemo experience. I had my last chemo on March 27th, just over three months ago.
Naomi Nakamura: So even if you were in remission you still had to finish up the whole course of treatment.
Alyssa Carrie: Yeah. Through the PET-CT there could still be some active cancer cells that it can't pick up. It has to be a certain size for the scans to pick up. That's also the same regimen that they had been doing for 30 years. It hasn't changed. What she told me is, if it's not broke, don't fix it.
Since then I've really been working with an integrative oncologist to figure out why this happened. Because the diagnosis was so hard for me, being 26 and thinking that I was going to go be this athlete and do cool things. Then working with my integrative oncologist, we were able to retrace my steps, and also get testing for glyphosate, and that, he believes, is my root cause, is my glyphosate exposure in 2015.
Naomi Nakamura: What is that?
Alyssa Carrie: Glyphosate is the chemical also known as Roundup, and it's used to spray weeds, to kill them. It's also used on genetically modified foods, it gets sprayed on those foods so that bugs will die, and I used it in my internship in college in 2015. We were spraying weeds that were killing native wildflowers. I did this for six months, and we weren't wearing any protective gear. We had it on our backs, and it came out of a spray hose on our side, no gloves, no masks, nothing.
Naomi Nakamura: Yeah, we've been hearing about stories in the news about that.
Alyssa Carrie: Yeah, it's becoming more and more prevalent.
Naomi Nakamura: It's real, it happens to real people. It's not just the person you hear about in the news who won some court cases. It happens to real people, as you are here as proof of that.
Alyssa Carrie: Yeah. And some first signs that I didn't actually associate with this exposure was, my first sign was gluten intolerance within weeks after my first exposure. We would be eating lunch and I would be ... This was before Bowman College.
Naomi Nakamura: So this is years before your diagnosis.
Alyssa Carrie: Yeah, this is in 2015. I went to Bowman in 2016, and we were eating lunch, and we'd all be eating sandwiches, and I was eating a peanut butter sandwich, and I would have these reactions where I would just be overcome with fatigue, and almost not be able to go back to work because I was just so tired.
Naomi Nakamura: And you're not a celiac.
Alyssa Carrie: No.
Naomi Nakamura: I always get this reaction from people that, "You don't eat gluten, well you're not celiac." And I'm like, because you're not celiac doesn't mean you don't have a real response.
Alyssa Carrie: Yeah, it comes in many many ways.
Naomi Nakamura: Yeah.
Alyssa Carrie: That's for sure. Even still to this day people are like, "You don't eat gluten?" I'm like, I have a terrible reaction to it, of course I'm not going to eat it. Why would I do that to my body?
So after the gluten intolerance I also, it was probably six months later, I also became allergic to several different types of fruits and vegetables with an anaphylactic reaction. Meaning my throat would close. Carrots, apples, green beans, celery, bean sprouts, nectarines, the list is hefty.
Naomi Nakamura: And you weren't always like that?
Alyssa Carrie: No, that was just six months after my initial glyphosate exposure. And I still have all of these allergies to this day. I'm working on it, it's a long road, but I'm in it for the long haul.
Naomi Nakamura: I just want to point out, because part of what I really, really talk about on this show, and many different episodes, and I really work with my clients on, is something you mentioned when you started sharing your story, was that you were journaling your food, and how you feel, and your sleep and all of that, and that helped you pick up on these things, which then led ultimately to your diagnosis. But now when you're working with your integrative oncologist you can go back through those notes, go back years, to 2015, and again, that is your health history where you can go back and you can pinpoint, wow, this might have been a factor.
Alyssa Carrie: Yeah.
Naomi Nakamura: "These food intolerances, or these allergies, that I developed, they actually probably were connected here." That is why we talk about doing these things, and the power of doing these things.
Alyssa Carrie: Yeah. Really if you're working with doctors, they like this type of data. It's so easy to forget, was it six months ago, was it two years ago? It's really easy to forget those timelines, so honestly, keeping that journal has really helped me a lot during my journey too.
Naomi Nakamura: I'm pretty sure, it probably really helped to build that level of trust that your doctor had with you too.
Alyssa Carrie: Yeah, totally.
Naomi Nakamura: So that's your story.
Alyssa Carrie: That's my story, and it was a tough road, but I definitely came out better on the other side of it. Now here I am with Katie, and we're collaborating to help other people go through what we have.
Naomi Nakamura: That is why we're here, because you both were so young in bring diagnosed, and having to live through and survive cancer. But what I love is that the both of you are putting your education through Bowman college and your life experiences together, to then put together something to help other people going through it. So you guys have created a program. Tell me about it.
Katie Leadbetter: We're calling it the Cancer Survivor's Course for Thriving Through Cancer, and the goal is to teach a holistic approach to support health and wellness, overall health and wellness, through cancer treatment. That's kind of our goal, and it's going to be an online course that people can take while they're going through treatment. When Alyssa reached out and told me about her diagnosis, I definitely told her the things that I found that were really helpful for me, and we were in contact throughout treatment. I don't remember when it was, but seeing all the stuff that she was posting that she was doing, I was like, "She's like me, I'm like her. We both are doing these additional supplementary treatments for ourselves." I don't want to call them treatments, but things in our lives that we're doing to help make sure that we feel our best during treatment, and to make sure that we get through this stronger and are not depleted.
Like you, my oncologist was like, "Wow, you're tolerating this better than so many of my other patients. Part of it is, we had age on our side. That is not a factor we can take out of that. We were both young, our bodies haven't been through the same thing, and we recover quicker. But I knew that there were other things I was doing, and using, doing, that made a difference for us. So I was like, we are both doing things that we've learned through our schooling and our own research, that the average person doesn't know anything about. So I was like, I have to reach out to her and see if she wants to collaborate on something. [crosstalk 00:32:24]-
Naomi Nakamura: I'm sure you also get a lot of questions from people as well. Being in this wellness world, I see a lot of programs for other chronic illnesses, like autoimmune, all these different things. I don't see a lot of programs out there for people who are going through cancer. I was like, I think I really kept telling you guys, you have to do something, you guys need to do something.
Katie Leadbetter: We definitely felt some nudging, there was definitely some nudging from you.
Naomi Nakamura: So I'm super excited you guys are doing this.
Katie Leadbetter: Well thank you. Thanks for pushing us.
Alyssa Carrie: Katie was actually one of the first people that I told I have cancer outside of my boyfriend, because I knew she had been through it previously, and I was freaking out and just needed some advice. I hadn't even told my parents yet. She sent me a little care package, which was really fun for me, because my primary love languages, which I think is really helpful to know people's love languages, by the way, mine are quality time and receiving gifts. So this little gift package that she gave to me meant so much to me, and it hit me like a ton of bricks that I wanted to do this for other people too. I was only maybe a month into treatment, and already thinking about all these things that I could do, and then gotten a few other random gifts from people, and it always brightened my day to open them up and see what people were thinking about me when they picked X, Y, Z out for me and gave it to me. That brought me a lot of joy.
That's when I started thinking about creating cancer support boxes, and some type of program to help people go through cancer treatment. Because myself and Katie were both lucky enough to have the knowledge, like she said, going into this, and be able to research and know where to start. Not everyone has that opportunity and that kind of schooling, so I really wanted to help people go through this process. I started learning how to create an online course, and a couple of weeks after that Katie was like, "Let's collab." Then the pieces just fell together quite perfectly, I must say.
Naomi Nakamura: When someone's going through a cancer treatment, they have, as you both had, you have your whole treatment plan laid out for you. So you never want to interfere with that, but what your program does, and correct me if I'm wrong here, is you teach a lot of things to support someone going through that. So this is not to say don't do what your doctor is telling you, but this is what you can do to supplement that. So can you share, what were some surprising, and even maybe frustrating, things that you were found lacking from your treatments?
Katie Leadbetter: Yeah. You're right, you're 100% correct, we are not saying "Don't do chemotherapy," or radiation or whatever. Absolutely do what your doctor has said to you, but this is meant to go along with that. Obviously check with your doctor before you change anything, but most of these things are based in real food nutrition and mindset work, which, those are all important things, and aren't going to interfere with what you're doing. But I was super frustrated because I didn't feel empowered by my doctor to do anything.
I was like okay, what should be doing, what should I be eating? And he was like, "Just eat whatever you normally eat." I was like, "For me, I have a real food diet. I don't eat any gluten, I limit my dairy intake, I eat real foods, occasional grains, but whole grains, not like like pasta and not rice cakes. Real food." I felt like I was okay, but he didn't know that. He had no knowledge. I could've been eating fast food every day every meal, and he had no idea. So to tell me just to do whatever I had been doing didn't seem like a good solution, and the reason why he didn't tell me, I think there's two reasons. One, he doesn't want me to feel guilt that I caused my cancer, so fair enough. But the other reason, he don't know. He really has no idea what to tell me to eat. Most doctors -
Naomi Nakamura: That's not his specialty. His specialty is in oncology. Nutrition is actually a science, and that's not his specialty.
Katie Leadbetter: Yeah, exactly. So I just feel like patients are not empowered to be an active agent in their own care. Not everybody wants that, and I totally understand that it's already overwhelming enough, but there are plenty of people who want to do something, even if it's not everything, but they want to do some things to support themselves. So that's the big thing that I think was missing in my mind, there wasn't anything like "Go for a walk every day, connect with nature." None of that.
Naomi Nakamura: Right. I imagine, and again, as someone who hasn't gone through that, I'm sure going through that, there's a lot of feeling of helplessness and loss of power, and doing something like this gives you a little bit back of control.
Katie Leadbetter: Mm-hmm (affirmative). And I really identified with, Alyssa, your story about when you thought you were going to be in intermission and you didn't. It's not that that happened to me, but things got changed, like I had to have a PICC line put in after the fact, and I was like, this isn't a part of the plan. I had six chemos, I was going to be done this day, everything was going to happen according to this plan ... Because all of it is out of my control. But they give me a plan, I could follow the plan. I could be onboard. But then you changed the plan and my chemo got delayed once, and it just sends my world for a downward spiral, because I just was like, I have zero control here. I'm at your mercy, I now know that a bit of structure helps me to know what I'm doing. So it is totally that, give me something I can do so I'm not just stewing in my head the whole time.
Alyssa Carrie: I totally agree with all of that, and for the most part, I really didn't feel empowered by ... I was terrified going to see my oncologist, because I didn't feel like I had a say in anything. It was just show up, this is what you're going to do, go do it, come back in two weeks, or one week or whatever. That was not a fun feeling. The only other thing that I was told to do was to not eat raw protein, because your body can't fight off infections or illness, and protein has a higher chance-
Naomi Nakamura: So no sushi.
Alyssa Carrie: Yeah, no sushi, that was the worst. Oh my gosh, you can imagine how many times I've eaten sushi since then. But my oncologist also didn't know that I was a nutrition coach, or I wasn't given any resources, so it was pretty tough for me, and I just felt like my opinion didn't matter. That was the part that was really frustrating for me, because like I said earlier, if someone else is just kind of coming and getting treatment, going home, coming back in at their next treatment, and just kind of going through this with just not knowing what else to do. And that's what Katie and I want to help, is help them kind of get through that.
What also surprised me in a good way through my experience is how amazing nurses are. Just a big old shoutout to nurses, because I have never met ... Every single nurse I had for six months was just beyond amazing. Made me feel comfortable, and it was also weird, because almost every single time I was almost the young person getting chemo, so they made me feel comfortable and at home, and that was really cool, so a big shoutout to them.
Another fun thing that I would recommend is, my second to last treatment, one of my nurses gave me an extra bag of saline after my last chemotherapies, and she said she does this with all of her patients, but it's not like a known thing, and it tremendously helped me to stay hydrated and stay so much better. I was just upset that that was my second to last treatment and not before that. So that's a little tidbit for anyone who needs a little push, that really really helped a lot too.
Naomi Nakamura: What were some things that you felt, other than what you already shared, were there other things that you felt wasn't addressed during your treatment that you really wished was, and that you really wish are things that are pulled into cancer treatments?
Katie Leadbetter: I think that there's a lot, there's many things that we're exposed to that are contributors to cancer, they play a role in getting cancer. Diet and toxins, stress, those kinds of things, but there's other things, like genetic factors, other mutations, I have the BRCA1, we have less control over those. So there are certain things, and I can't control anything that has happened to me in the past. But this is why cancer is challenging to treat and to cure and tend. We can't control some of those things, but we can control some, so why not control those things. So I felt like, okay, you can tell your patients to make sure they get some daily movement in. Stretching, light yoga. You can tell, and there's nothing wrong with telling people to do that, so why aren't we? Why aren't we giving people some sort of power back in their treatment? Those are things that, stress is a huge factor in cancer, it's been well established, and I know from my personal experience that that is definitely something that played a role for me.
Naomi Nakamura: Especially when that's probably the most stressful experience you've had in your life to date.
Katie Leadbetter: Yeah, exactly. Things that also weren't addressed that I think could've been, mindset and meditation. I think some people that I know did see therapists. There was not something that I saw, and I'm not sure why, but there wasn't any real talk of, "How are you doing, are you getting through this okay". And cancer is a really hard thing to process. There's a lot going through your head, but it's important to get out of your head. You need to connect with people, and you need to connect with nature, and you need to connect with your own body, like through some physical movement, to help get out of that hamster wheel of what happened. And it's a very emotional time, but not everybody has people they can talk to or good coping skills, ways to figure it out. Journaling, things like that. So not everybody is equipped to handle some of the things that cancer forces you to deal with.
Naomi Nakamura: Or even just learning how to connect with your own body.
Katie Leadbetter: Yeah. So I think those are things that, for me, weren't addressed, but I wish that they were.
Alyssa Carrie: I have to agree, for sure, because we all have different personality types. I know for me, a way that I cope is, I make jokes out of it, and I try to brighten the mood, and I push that negative feeling way way down so it's never going to surface ever again. Which, I didn't realize that I did this until I was going through treatment, and I was learning more and more about myself, and I discovered the enneagram. That's another topic, but I'm a type seven, and that's just kind of the way that a seven will try to get rid of negative feelings, is just push them away. And that's not helpful when you're going something through so traumatic. And that's why I really wish mindset meditation, like Katie mentioned, was brought up more, because that wasn't for me, and it was really hard on my first months. I couldn't have a conversation without breaking down, and that's not a fun way to live, so it just makes it worse in the long run for sure.
Naomi Nakamura: Out of curiosity, do you guys talk about the Enneagrams in your program?
Katie Leadbetter: Oh gosh.
Alyssa Carrie: That would be pretty cool.
Katie Leadbetter: Maybe that will be something we'll add on at the end, on this module.
Alyssa Carrie: I really think it's super helpful to know how you process grief and trauma, and learning how I process it, I was like, "Wow, I've done this my entire life," and it never clicked until then, so that was super helpful, for me to learn my mindset so that I could learn how to meditate properly for my personality was super, super helpful.
Naomi Nakamura: It's funny, you mentioned the love languages earlier, and kind of related to that is, after I learned the love languages, I thought back at different relationships and friendships and things that I've had in the past, and I'm like, that's why that didn't work out, they weren't speaking my love language.
Alyssa Carrie: Exactly.
Naomi Nakamura: There's a lot of power in knowing those things that can help with your mindset and your coping skills.
Katie Leadbetter: The other thing that I think is important is, there's a lot of self resentment that starts to come up, you start to feel like your body has betrayed you. That's okay, I think, to feel that way for a little while, but not for a long time. Because otherwise the self-loathing and self-hatred can start to develop too. So I think those emotions are normal, but you feel betrayed, but then you have to figure out a way to move past them. Again, this is all that mindset meditation work that, if you don't move past those feelings, they're not going to serve you and they're not going to help you to heal. And like Alyssa said, it's not making things better for her when she realized that this was a coping strategy that she was using. So all of that stuff is not really talked about, and should be.
Naomi Nakamura: So your program, your guys' brand new program, who is it for? Is it for the person going through treatment? Is it for their loved ones who's supporting them? Is it for maybe a professional, like a nurse or somebody, who treats cancer patients? Who is it for?
Katie Leadbetter: It's for men and women who are going through cancer treatment, that are interested in playing an active role in their health and wellbeing. It could be for caregivers, like you mentioned, for someone going through cancer treatment. Because a lot of times your primary caregiver wants to help you out and they don't really know what to do, so we give all the tools for that. Pretty much anyone who's just finished cancer treatment will also find all of our information super helpful, post-treatment, through treatment, kind of anything revolved around treatment. If a practitioner of some sort wants to kind of step in someone else's shoes and see what it's like to go through, I think that could be beneficial as well.
Naomi Nakamura: So the current patient, the patient who's already completed treatment, and then supporters.
Katie Leadbetter: Correct.
Alyssa Carrie: Yeah.
Naomi Nakamura: What can they expect from the program?
Katie Leadbetter: Right now we have 12 modules. The first one's on diet and it is like five modules in one. It's a big one, that was definitely our biggest one. Then we're going to talk, because we touched here a little bit on [inaudible 00:46:21] at work, but we're going to talk about that in the module, digestive support module, because chemotherapy especially does really wreck your digestive system. Liver support to help deal with all the toxins, with extra load and burden that your body is dealing with.
Naomi Nakamura: From treatment and from medications.
Katie Leadbetter: Mm-hmm (affirmative). Movement. Skin support, because it's another one of the areas that's really affected in the chemotherapy, all the fast-growing cells, and skin is one of them. Lymphatic system, Alyssa mentioned that that's where she found her lump, was in a lymph node, and so we really need to support the lymphatic system.
Naomi Nakamura: That just helps with the natural detoxification process that our body naturally does.
Katie Leadbetter: Mm-hmm (affirmative). But in our modern world we don't get enough things to support our lymphatic system, so we want to make sure people know about it and how they can support it. There's going to be one on sleep because that is so elusive during chemotherapy.
Alyssa Carrie: I'm like, can I get that now?
Katie Leadbetter: Environment, like what you can change in our immediate environment to help reduce the amount of toxins you're exposed to, and what things you can avoid there. Then reducing your toxic load in general, not just your physical environment, but other things that you're doing. Then we want to talk about supplemental support, so what other things you might seek out that can really support going through cancer treatment. We're looking at things like acupuncture, saunas, things like that. Then a module on immune health and support, because the chemotherapy really weakens your immune system. Cancer is supposed to be patrolled by your immune system, and you have cells all over your body trying to destroy any cancer cells growing at any times, so something goes awry with your immune system and that allows cancer to grow.
Naomi Nakamura: Right, and the immune system's different than other systems in your body because it's not like it's localized in one place. It's throughout your whole body. I think it's great that you guys have a whole section dedicated to immune support.
Katie Leadbetter: And we're having it as a self-paced course, so people can enroll at any time because we know that you don't just get diagnosed in January and June or something like that, so we're going to have it be something you can enroll in at any point in time.
Naomi Nakamura: So these are just videos that, people sign up for the program, they get access to the videos, they can watch it at their own pace. Maybe when they're going through treatment.
Katie Leadbetter: Yeah, on a day that they're feeling okay with learning. When their brain's able to stay focused. Each module is going to have downloadable handouts that they can either keep in a folder or binder, things to reference later, and they get lifetime access, so once you go through it you can always go back and rewatch a video that you-
Naomi Nakamura: So even if you make updates later they'll still be able to get that.
Katie Leadbetter: Mm-hmm (affirmative). Then we're going to have a monthly live component where we're going to be hosting some Zoom calls for folks so that they can jump in on a call and talk with us personally, ask more questions. We'll have a focus around a topic, but because someone might enroll in June and work partway through it, and then someone can enroll in September and be at the beginning, we want the September call to be applicable for anybody, so we want that component.
Naomi Nakamura: So that's kind of just video calls, but that also gives them access to both of you directly, where they can ask you questions and get your input on whatever it is they have questions on.
Katie Leadbetter: Yeah, exactly. As we do updates those will be in there too, so if anything changes or gets added, they'll have access to that too.
Naomi Nakamura: When is this all available?
Katie Leadbetter: It's going to be launching at the beginning of August. We have August 5th as our launch date right now.
Naomi Nakamura: Cool. Where can people go to find out more about it?
Alyssa Carrie: You can sign up for our email list right now, since we're not launching till early August. We're sending out freebies every single week with actionable steps to take, because we don't want, if you're diagnosed right now we don't want you missing-
Naomi Nakamura: Yeah, you're expending resources for people now.
Alyssa Carrie: Exactly. So each week you'll get a different handout pertaining to modules that Katie explained, the 12 different modules. You can find that at CancerSurvivorsCourse.com, and you can subscribe through there. There'll be some links.
Naomi Nakamura: And if people have questions they want to ask you directly, how can they ... ?
Alyssa Carrie: Yeah, they can email us at info@CancerSurvivorsCourse.com, so "CancerSurvivors", so there's an S at the end of survivors, course.com.
Naomi Nakamura: And I'll have links to this in the show notes for this episode.
Alyssa Carrie: Perfect.
Naomi Nakamura: Then, you both are active on social media, right?
Alyssa Carrie: Yeah, we're both pretty active on social media. Katie does a lot better job than I do.
Naomi Nakamura: Where's the best place to connect with you on social media?
Alyssa Carrie: Definitely Instagram for me. It's AlyssaCarrie.wellness. My website is also AlyssaCarrie.com. C-A-R-R-I-E is how you spell Carrie.
Katie Ledbetter: And I'm Clean Eating With Katie on Instagram and CleanEatingWithKatie.com on the internet, and we'll be having some promotional items as we get launching, so we encourage people to go and check out the website, and for whatever current promotion. They'll be changing as things get rolled out, so we want your listeners to go check it out and sign up. What we've been saying to everybody is that these candidates are for anybody, so if you just want some free handouts you're also welcome to go and download some of those handouts, some of the more specific cancer geared ... The items that are specifically geared towards cancer in the course, but some of the things on the handouts are a little bit more general for anybody.
Naomi Nakamura: As a listener, if this is not something you're going through right now, but you find out that someone you know is, this is a good resource for them. Please share it with them.
Katie Ledbetter: Yeah, absolutely. I think you mentioned earlier that people reach out to us, and that's the thing that I know ... Whenever someone in my life gets cancer, whether I know them or I know them through somebody else, sisters of a coworker, friends of a coworker, they all come to me, and I'm sure you're experiencing that too Alyssa, come to you now and ask you for help. So it's like, this is now where all of the wealth of knowledge that I'd love to share with those people is now going to be housed.
Naomi Nakamura: I'd also imagine, maybe somebody who's not necessarily a primary caregiver, but just a loved one, who, they want to help, but they don't necessarily know how. I think there's a lot of good information there that can just give people some ideas on that.
Katie Ledbetter: Absolutely.
Naomi Nakamura: Thank you so much for coming on. I've learned a lot. I really appreciate you both coming on and just vulnerability sharing your stories, and I hope people take advantage of it, because I really think it's something that's so needed.
Katie Ledbetter: Thank you so much for having us.
Alyssa Carrie: Yeah, thank you so much.
Naomi Nakamura is a Functional Nutrition Health Coach. Through her weekly show, The Live FAB Live Podcast, programs, coaching services and safer skincare solutions, she helps people with chronic skin issues clear up their skin by teaching them where food meets physiology and how food, gut health, stress, and toxins are intricately connected to the health and appearance of our skin. Naomi resides in the San Francisco Bay Area and can often be found romping around the city with her puppy girl, Coco Pop!
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