Harnessing the Power of Advocacy and Connection in Cancer Care with Jamie Madigan

When Jamie Madigan found himself grappling with a cancer diagnosis amidst the pandemic's peak, he didn't realize his journey would become a beacon of hope and resilience for many. Communication TwentyFourSeven host, Jennifer Furlong, sat down with Jamie to untangle the complexities of patient advocacy, the critical need for accurate diagnosis, and the power of human connection when facing life's most formidable challenges. We uncover the strength found in vulnerability and the importance of a support network, offering listeners a raw and inspiring glimpse into the world of cancer survival.

This episode also illuminates the sometimes unspoken language of cancer—where words of encouragement matter, how to communicate effectively with medical professionals, and why a sense of camaraderie, even humor, can become a lifeline amidst the fight.

We also explore the daunting decisions that come with treatment options, emphasizing the empowerment that stems from second opinions and informed choices. Listeners will gain insight into the proactive steps one can take, from lifestyle changes to keeping meticulous health records. This episode is about more than just surviving; it's about taking the reins on your health journey, finding laughter in unexpected places, and building a community that stands strong together in the face of cancer.

Connect with Jamie:
Website:  https://www.beaconpoint.ca/
LinkedIn:  https://www.linkedin.com/in/jamiemadigan/
Calendar Booking:  https://calendly.com/jamiemadigan/intro

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Transcript

Speaker 2: 0:07

Welcome to the Communication 24-7 podcast, where we communicate about how we communicate. I'm your host, jennifer Furlong. Jamie, how are you doing?

Speaker 1: 0:30

I'm good, jen, how are you?

Speaker 2: 0:32

So good to see you, my friend. I have been so excited to have this conversation with you To the listeners. I want you to know how incredibly important this conversation is about to be. If you have not been personally impacted by this topic we're going to discuss today, chances are you will be impacted by it at some point. Today's conversation is going to center on cancer and having cancer conversations.

Speaker 2: 1:05

Jamie Madigan is a friend of mine. He lives in Toronto, Canada. We met through a couple of online groups that we were both members of. I just really enjoyed having conversations with him. Both of us have had cancer journeys. I've asked Jamie to be on the show because I think we both agree that once you're diagnosed, you end up having a lot of interesting conversations with friends and family, Some of it positive, some of it challenging. He's been so gracious to agree to have this conversation with me. So listeners stay tuned because there's going to be so much coming out of this conversation. So again, Jamie, thank you for being on the show. Welcome aboard. Thank you for agreeing to have this conversation with me, because I know it's not an easy conversation, but it's important.

Speaker 1: 2:07

Yeah, no, exactly, jen. I couldn't agree more. That's why I'm here today. That's why I'm also excited for the conversation and, just having gone through all of the issues that I know between my dad and them myself, I've learned all about the importance of communication, patient advocacy. So I'm excited to discuss that in greater detail today and share that with the audience.

Speaker 2: 2:33

Yeah, absolutely so. You are a financial planner by trade and so that's going to be just so everybody knows we are going to have you back again. We will have that conversation separately, because that's also an important topic to discuss. But to get everybody caught up on what has been happening with you and your cancer journey, do you mind just sharing with the listeners what happened? How did you find out about your cancer diagnosis?

Speaker 1: 3:08

Sure, so I'll try to give you the high level executive summary, but this goes back to April 2021. And, of course, covid is still happening. I can't remember if we were in lockdown at a lockdown it's all a blur back then.

Speaker 2: 3:27

I think we were still in lockdown. I think we were still right in the middle of it.

Speaker 1: 3:32

I think so and, for starters, I don't have a family doctor. I haven't had one since 2018, when the walking clinic I was going to closed and I didn't discover, probably about a year after they closed, that they had closed. So I thought, oh, I guess health has been good, I haven't needed them. But yeah, in April 2021, funny enough, it was a Saturday afternoon, I remember it vividly got out of the shower, discovered a lump in my groin, which naturally should not be there. That's not normal. Then I thought to myself okay, what do I do? I haven't been able to find a family doctor. I haven't been able to find a walking clinic in the area that I like. Oddly enough, I was on my phone and I think it was likely on a social media app and I got a pop up about Tell Us Health, an app that you can download for virtual appointments. So I thought, okay, this is a sign. I hope, downloaded the app, created my profile and I had an appointment that afternoon, I think, even within a half hour. Wow.

Speaker 2: 4:50

Okay, better than nothing.

Speaker 1: 4:53

Yeah, it was still relatively new. So I had virtual appointment over the phone with the video explained about the lump, and they said, okay, well, we'll send you for imaging and I went ahead and ultrasound done at a nearby lab. When I got there I told the technician, I said I understand, like they said, to do ultrasound on the lump, and I was ready to go all around see if there's anything else in the area. And then of course she just sticks to the limited area and I thought, oh God, something might be missed.

Speaker 2: 5:33

Don't go above and beyond.

Speaker 1: 5:35

Yeah, let's not go the extra mile, that's right. But yeah, and then within a week I had a follow up appointment and was told oh, it's likely just a mass, don't worry about it, it should go away three to four months. If it doesn't, or if it gets bigger, call us back and let us know. That was a Tuesday, I think, and then by Friday it just wasn't sitting right with me and, oddly enough, I was talking to a mastermind group on Friday morning and we got onto the topic of GPs, doctors and the fact that family doctors know a little bit, a lot, but not really specialists. So I thought, okay, here's another sign. I can't wait three to four months and just hope this goes away. I don't think it's just a mass. So I booked in another appointment and said, look, it's getting bigger. What's the next step? So I need a referral to a specialist.

Speaker 1: 6:43

Well then, it was a referral to a urologist, thinking that it could be a hernia. They've referred me to one urologist who I guess had a massive backlog. So after a while I said, look, I live in downtown Toronto. If this guy is the best, I can wait, but I gotta believe that there's other urologists I can go see and, again, I can walk, drive. It doesn't have to be downtown. I wanna get this taken care of sooner rather than later. So eventually they've referred me to someone else and I was able to get in to see him rather quickly. Right away he confirmed he's like I'm glad you pushed, this isn't a mass. I think it's a hernia. I can't confirm that though, so I'll refer you to a general surgeon who can confirm that. So he referred me to general surgeon at St Mike's, the local hospital, and in the meantime I also had imaging done at the hospital. So we did an ultrasound, a CT scan and blood work and I finally got in.

Speaker 1: 7:54

So I saw him in June, finally got in to see the general surgeon in August. She was impressed at all the tests that he had run and commented thank God he ran those tests because in looking through them this is much more than just a hernia. There's a team that deals with this at Mount Sinai, another local hospital in downtown Toronto. Fortunately, one of the advantages of living in downtown Toronto is I could walk to all these hospitals. So I got in to see them in October, did some more imaging tests, blood tests. They had an inkling that it was likely cancer, did a biopsy end of October and then early to mid-November it was confirmed that it was cancer and, of course, apparently a unique form. I'm like, okay, I did not want to be special and unique in this area and at the time I was only 44. So not something I expected. My dad and three of my uncles have had prostate cancer all later on in life, so I figured probably in my 60s I'd be hearing that diagnosis. But at 44, that was not something I expected.

Speaker 2: 9:18

I was also 44 when I was diagnosed with breast cancer, and you're right, we feel so young. It's like wait a minute. This is not normal, and so it sounds like it was what a good four, five, six months between you discovering it and then it finally being diagnosed.

Speaker 1: 9:40

From April to November.

Speaker 2: 9:43

Wow, wow, so let's-.

Speaker 1: 9:45

Only because I kept pushing.

Speaker 2: 9:47

Exactly.

Speaker 1: 9:48

Thanks God it was three to four months or it would have been likely a year.

Speaker 2: 9:53

Yeah.

Speaker 2: 9:54

So, that really underscores the importance of being your own advocate, just being willing to push it when you feel like you need to push it. So how were you able to I don't know if the right word is have the strength, or maybe just the perseverance, to do that, because it's very easy to get frustrated with the system? Now I live in the United States and you're in Canada. We know that the entire medical industry is completely different between the two countries, but the frustration is there, no matter what, because we have to wait a fair amount of time or the same thing. You'll have a doctor that just doesn't think it's anything serious. So what did you do to persevere through that? So many people give up.

Speaker 1: 10:53

Yeah, no, that's a great question, jen, and for me it was just wanting to know and getting answers, because I try to always maintain a positive mindset and focus on what I can control. I was in the best shape of my life eating healthy, working out every day, so that was the other thing I might get. No, this can't be happening. This is the best I've ever been.

Speaker 1: 11:21

So, yeah, I just kept pushing for answers and then, when I finally was diagnosed, my first question to my oncologist and general surgeon was would you consider this to be life threatening cancer? And they both gave me this weird luck Like, why, like, yes, why do you ask? Nobody's ever asked us that before. I said well, remember, I'm a certified financial planner, I've got a critical illness policy. If this is life threatening cancer, I should be able to make a claim and, depending on treatment, if I have to take time off work, I'm 100% commission, so the claim could be huge. So, yeah, I was able to get them to complete the paperwork for me, submitted the claim and within eight business days of submitting the claim, I received a check in the mail.

Speaker 2: 12:16

Wow, that's a big lesson learned right there for our listeners. Really look into that, because I know we have critical health insurance as well. I had that as well when I was diagnosed and it was a huge help. So if you're a listener and you don't know what that is, I really encourage you to look into that, because neither one of us planned for it, you know, but it happens and, jamie, you know you were in the shape of your life running and working out and eating healthy and so that kind of busts, you know that myth that hey cancer is. You know it's connected to, although there are some correlations, but you know anybody can get it. Anybody can get diagnosed with it.

Speaker 1: 13:06

Yeah, and the more I've researched it, Jen, and looked into it, cancer is just really our own cells turning against us. So, as much as people think it's genetic, genetics really only plays a small role in it's really all about our diet, nutrition and environment that really impacts whether or not we get it and how severe it is.

Speaker 2: 13:31

Yeah, so I imagine that was just a huge surprise for you. I think it's a huge surprise for anybody when you hear that diagnosis. So after you were diagnosed this is a conversation I have with a lot of cancer patients Once you're diagnosed, how people treat you like friends and family, or the types of conversations that you have did you feel that you were well supported? You know at the beginning what were those conversations like with your friends and family and I'll share what mine was like, but I'm curious about your experience with that.

Speaker 2: 14:15

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Speaker 1: 15:00

Sure.

Speaker 1: 15:01

So while I was going through all this from April to November, I really only two friends of mine knew I didn't tell my family because my dad was dealing with his own health issues and in September or October he was given three to six months to live.

Speaker 1: 15:23

So I didn't want to be worrying my family without knowing for sure what I was dealing with, because we were already dealing with enough with my dad. So I can't thank my two friends enough for being there to support me, checking in on me. Unfortunately, even with the weights that I've had, everyone that I've dealt with has been amazing. So that is the plus side, that and given everything like the healthcare industry has been through with COVID, as you know, like they are overworked, they are going through so much. So the fact that I feel like I've been treated well, not a number, I'm not rushed. I showed up with lots of questions, I'm very detail oriented and they always take their time with me, answer all of my questions, I don't feel rushed, but I'm sure the fact that I show up organized, with a plan and knowing like dates, times, who I've met with, when my tests, everything, Did you have a notebook with you so you could keep track of everything?

Speaker 1: 16:40

It's all on my phone.

Speaker 2: 16:41

Oh, okay, good, oh good, good idea.

Speaker 1: 16:44

So I keep. Yeah, I just have a bunch of notes on my phone so it's always with me and I make it known at the start of every meeting. Every time I meet with somebody new I say just so you know, I'm taking notes on my phone. I'm not texting friends or family and that usually gets a laugh, but I want them to be aware that I'm taking control of my health and every time I've shown anybody the notes, they're always impressed at how detailed they are. But that really goes back to my career as well. From audit and compliance purposes I've got to be very structured detail every conversation I have with my client, everything that we're doing. So that has been instilled with me for over 20 years now. So naturally I applied that both to my dad's health when I was advocating for him and now to mine when I was advocating for me.

Speaker 2: 17:43

So there are really two important points I want to highlight here. Number one the communication you're having with your doctors. I did the same thing, but I had a notebook that I would bring in because I would want to hand write and scribble and all of that. But it's really helpful for you to be able to keep track of that, because when you are stressed out and you're in the doctor's office and if you don't have your questions written down, you'll probably forget what they were. So it really helped me to have those questions figured out ahead of time so I could walk in there with my little notebook and remember oh yeah, this is what I was gonna ask and then, by scribbling down their answers, it was also a way to track our conversations, because you end up having so many different doctors that you have to see it can easily get jumbled up in the brain. So that's such a fantastic piece of advice for anyone who ends up going through this experience. That's a great communication tool to have.

Speaker 2: 18:47

The second thing I wanted to highlight you had mentioned that at that time you hadn't talked to your family about the diagnosis because they were going through another serious issue with your dad. But your friends were key in helping you along. So, from that perspective, what did your friends say or what did they do to really help you in that time of need? Like I said, if we have not been impacted by it ourselves, likely we're gonna know someone who is diagnosed with some form of cancer. So what type of advice would you give our listeners on how to be that good friend? What were those conversations like?

Speaker 1: 19:35

Honestly, jenna was just checking in on me offering to go to any of my appointments if I wanted support and just saying how are you, do you wanna do something? Let's get together, get your mind off things. So that's what I appreciated, and especially again during COVID. And I got a new appreciation for I learned to really were my friends and who would check up on me and I'd also check up on them and who I never heard from. So yeah, just the checking in and offering support, that is what really did it for me.

Speaker 2: 20:19

Yeah, it can be a really lonely journey if you don't have anyone checking in on you. So if you do have friends who are offering that, don't turn them away. Just accept the love when it is offered and just allow them to be there for you. I interviewed this was last year I interviewed an HR director and she had shared with me her husband had passed away from cancer and as an HR director, it made her realize that there were so many people in the workplace that just were not prepared, especially managers. They just weren't prepared. How do they handle this? How do they manage employees who have been diagnosed with cancer or they have a loved one who is diagnosed with cancer? And one of the things she shared with me that she found was incredibly helpful was when her friends were as specific as possible with what they were able to do, and so a piece of advice, she said, is if you're able to go to the grocery store, offer to go into the grocery store.

Speaker 2: 21:26

If you're able to watch their kid, if they're a parent, offer. That, she said because the more specific you can get, the more that they are likely to accept that offer. Because it can be a little difficult to say hey, just tell me what you need, because sometimes we don't even know what we need In that moment in time.

Speaker 1: 21:48

Yeah, yeah, no, that's just it. And I feel fortunate because it hasn't really impacted my lifestyle yet, or at least not severely. I've still been able to work, which has been huge. But, yeah, I've had a lot of offers that if you need anything, if we can do a grocery run for you, let us know. So, yeah, just even those little things. I kind of feel bad. I'm like no, I'm fine, like I can walk to get my groceries or drive to get my groceries. I'm not in bed, I'm still living. But yeah, just those little offers are appreciated and I shared it eventually.

Speaker 1: 22:30

I shared it on social media in December and just did some public posts because I'm like, rather than have this conversation over over over, I'm just gonna blast it out to everyone. And then, yeah, I found actually one of my friends reached out and I didn't know that he had been diagnosed with cancer years back and he gave me a headset. He's like, hey, you probably don't know this, but I have cancer, I've recovered. He's like I'm here for you whatever you need, but just so you're aware. He's like people will reach out to you because you've posted this, but they're scared, they don't know what to say and don't be surprised if nobody follows up and you don't hear from a lot of them again, because they just don't know what to do or say. And now they're scared for you. That's right.

Speaker 2: 23:24

And it's okay from a communication standpoint, if you're a friend or even a family member. If you don't know what to say, it's okay to say that. I mean, I completely understand that. I mean it just, yeah, this sucks, right. I don't know what to say except for this sucks and that's it. I'm here for you, but I just don't know what else to say because, it's true, I mean, no matter what they say, it's really not going to, at the end of the day, make it better. You still have to go through your treatments, you're still having to deal with something that they're not having to deal with. So I think, just being honest and just showing that you want to offer some support, but if you don't know how, then there's nothing wrong with saying that and I'm glad your friend said that to you. Was that helpful to you? Like, was that a way to help you just feel better about those who kind of disappeared after you made the announcement?

Speaker 1: 24:26

Yeah, no, it was perfect because it was an eye-opener for me, something that I wasn't aware, I've never thought of, and sure enough, it happened. So when it happened, I thought, okay, well, this is exactly what he warned me about, what he said again, for anyone who's listening, it's okay just to say, like even some messages I got Jamie, no need to respond just wanted you to know that I'm thinking of you.

Speaker 2: 24:53

Yeah.

Speaker 1: 24:54

Or sending you positive vibes or praying for you and all those little things. It warms the heart, it makes me feel good. And the few people that said no need to respond. I'm like, okay, you get it that maybe I don't wanna respond right away or I don't know how to respond based on the message Right. And then I did learn between my dad passing away and me sharing my diagnosis, because unfortunately it all happened in the same week, in December, and I thought, oh wow, how am I gonna top this messaging? I know that people mean well, but some of the messages just had such a negative tone, oh, no that. Oh my God, jamie, this is so horrible. I can't believe you're having to go. And I'm like, how or why would I respond to this, especially the fact that I'm so positive?

Speaker 2: 25:54

Yeah, it's all about mindset.

Speaker 1: 25:57

Yeah, so that was a good wake up call from me. And another friend had also given me a heads up when my dad passed, because he lost his dad just a few weeks before me. Same thing he's like Jamie, just so you're aware you're gonna get all kinds of stories. Story is gonna lose any meaning for you. Yeah, people won't really know what to say or how to say it. You'll get some beautiful positive messages and then some horrible negative messages and the fact that it was December 16th, close to Christmas, a lot of people tied in the holidays and oh, what a horrible time for this to happen. And then over oh, you must have had a horrible Christmas. So I responded actually, no, we had a great Christmas.

Speaker 1: 26:46

Yeah, a lot of stories and memories of dad and went through pictures and it was wonderful.

Speaker 2: 26:51

And that in itself can be exhausting. I mean, you do try to keep a positive mindset because I mean, what else can you do? I'm sure you're like I was. Every now and again you're gonna have a day where it's really challenging. We are human. But at some point you do have to say, look, give myself permission to feel bad for a little while and then I really do need to focus on my next moves what am I in control of? And really try to make the best of it, truly to try to get better, Because if you go down that negative spiral just not only making you feel worse but the stress of it all you can make yourself even sicker. If you do that.

Speaker 2: 27:37

So for those who wanna communicate with a friend who's been diagnosed, just know that there's that part of the conversation as well you have to just be mindful of is it a positive tone, is it a negative tone, and what type of impact is that going to have on your friend? Because they're probably not gonna have, at least for me. I know I did not have the strength to be positive for myself and everybody else. You know like I just I needed to be. I had to muster up all the strength.

Speaker 2: 28:12

I could just to remain positive for me much less. It's okay, you know, to friends and family who didn't know how to react to it.

Speaker 1: 28:22

Yeah, there's always so much to go around.

Speaker 2: 28:25

Yeah, that's right.

Speaker 1: 28:28

But yeah, I know. So that was a big eye-opener for me as well, jen. And just something for our listeners to be aware of is pay extra attention to your messaging, the words you use, how you phrase it, and try to keep it positive. Again, I know everybody means well, that's right. But a message coming through is very positive. We'll have a way more better impact than something with a negative tone to it.

Speaker 2: 28:57

Yeah, yeah.

Speaker 1: 28:58

And again, if we're having a bad day and we get one of those negative messages that could just set us spiraling even more.

Speaker 2: 29:05

Yeah, and I love that you brought up the examples of. You don't have to reply to this. I just wanted to let you know A, b and C. What a load off, because then you start feeling the pressure. Okay, I've received 150 messages, and do I really need to? Because I don't wanna be viewed as you know, someone who's not responding, someone who's not appreciative of it. But there's a lot of pressure with that as well. So I'm glad you brought up that as an example, because I don't think that many people that might not be something that they think of you know right away to include in that message.

Speaker 1: 29:43

If I step back a little bit, jen, to what we were talking about, when you're going to your appointments as I've been going on my own because I'm again I feel like I'm in a good mindset. I'm aware of what's going on. I plan, I prepare. However, for a lot of people it can be a lot. One of my cousins who was diagnosed with breast cancer she's good now. As soon as she was my first call, when I got the diagnosis, she said I'm gonna be your cancer buddy, I'm coming to all your appointments, just let me know whatever you need. I thought you're amazing, I love you. This is what I called you.

Speaker 1: 30:19

But a friend of mine shared with me because her sister passed away from cancer and she said Jamie, I went to every appointment with my sister. I took a notebook, I took all the notes because it can be a lot for the patient. So I shared that with my parents when my dad was going through everything. I'm like mom, please go to as many of dad's appointments as they'll. Let you go to take a notebook, take the notes, because it's a lot of info and it can go in one ear out the other and at least by taking the notes, you'll have it to refer back to. And at the end of every appointment I always recap and say, just to ensure I've got everything now a high level summary. I don't recap every single word, but I just so. This is what we've talked about, here's the next steps. Have I understood everything correctly? And most of the doctors and nurses appreciate that, because then they confirm yes, you know what's going on, we're good to go.

Speaker 2: 31:27

Talk about the importance of clear communication with your medical staff.

Speaker 2: 31:33

That's a fantastic way to go about it, just recapping toward the end, because, I mean, you never know, you could have misheard something or just misunderstood something.

Speaker 2: 31:45

So it's so critical to be able to have that clear communication, and I like the idea of a friend if they're willing to go with you, or a family member if they could keep notes for you, because, you're right, you have a million things kind of swirling around in your brain and there's a very good chance you're not gonna hear something. I mean, it's better than none that you're gonna mishear something or just not understand something. I'm a member of a group on Twitter that it's a bunch of cancer survivors and we just kind of share with other cancer patients what our journeys were like, and it has kind of developed into also a lot of humor in this space, so that you have to be able to laugh every now and again, and one of the things that the labels that we came up with for people who have not gone through cancer yet we call them cancer muggles, and so it was like so what is your favorite thing that a cancer muggle has said to you in your journey?

Speaker 2: 32:54

and it's really quite funny, some of the things that people would say. So can you think of anything that along your journey, things that people have said that just kind of now that you think about it, it makes you laugh, or you're just like I cannot even believe that they said that to me. Jumpstart your healthy living journey with 30 days to healthy living. This best-selling nutrition set is designed to act as a reset to establishing healthy habits and a healthy lifestyle so you can get more energy, manage weight and feel fit. Now, with more choices than ever, you can customize your 30 days with delicious protein shakes, detox teas and supplements, all designed to support your goals. Ready to start feeling better and healthier? Get started today by clicking on the link in the show notes.

Speaker 1: 33:55

It would probably go back to some of those negative messages that I was touching on and the tone and just me being blown away thinking, wow, did you really write that, hit send and think you were doing me a favor? Hey, hello.

Speaker 2: 34:20

Yeah.

Speaker 1: 34:20

Yeah, maybe Let me send you positive vibes, because apparently you need some.

Speaker 2: 34:27

Right, we respond back to you. I have a couple of favorites. These are kind of like way out there responses that I got because, like you, after a little while I went ahead and put it on social media. This is what I'm going through, in case you hear it through the grapevine and you're hearing it straight from me. I wanted others to just be able to hear from me about the journey, in case anybody else were to go through this. Plus, my thing is communication, of course. I was thinking how do I incorporate this into what I do on a daily basis?

Speaker 2: 35:03

Talking about communication skills, one very good friend, who was well-meaning, had asked me after I was diagnosed with breast cancer what stage are you? I was stage one. You have stage zero, one, two, three and four. I said I'm stage one. She was like oh well, that's great, that's like the good cancer. I was like whoa, the good cancer. What in the hell does that mean? Okay, I'll remember that as I go through my surgeries my 30 rounds of radiation and all of that. That would be one for the record books right there. Those of you who are listening, don't try to equate anyone's cancer. If you think it's better than or worse than anything else. Just note, their journey is hard. There's no such thing in the world right now, especially when you're in the throes of it. Oh, you got the good cancer. I had to laugh at that.

Speaker 1: 36:15

Funny enough, jen. I can totally relate to that because for the longest time I kept forgetting to ask what stage I was, because it was always just brought up from the very beginning. This is a low-grade tumor, meaning that it's slow to spread and or grow. Yeah, when I share that with, oh well, that's good, I still have cancer. It's not good. It's been growing inside me for two, three years. So, no, right, yeah, so yeah, stage or low-grade. Never say it's good.

Speaker 2: 36:58

That's right, that's right, there's no such thing, it's a cancerous cancer Another way you cut.

Speaker 1: 37:06

It is just that it's just not necessarily a life sentence anymore, depending on when you detect it, However, still in a lower stage or low-grade still not a good thing.

Speaker 2: 37:20

Yeah, I mean you're still going to have to go through the surgeries and whatever that treatment plan is. I decided I chose not to go through chemotherapy because, after looking at the statistics over the long run, I did this with my oncologist and I was like, well, the numbers really aren't that different with chemo and the radiation versus no chemo. And I do the radiation. So I was like I'm just going to do the radiation for now, had the surgeries and the radiation, and I'm a numbers person when it comes to that. So I was like, well, the probabilities, this is looking pretty good. So that was a choice that I made, but it was still tough Going through all of that.

Speaker 2: 38:05

I am thankful that I didn't have to go through that step of chemo, because I know so many people who have, and it just wreaked havoc on their bodies. But it was still difficult nonetheless. But that does remind me also, there were several people who came out of the woodwork with a lot of advice on things I should be doing or things that I could be doing. So did you get any sage advice from people who have never been through cancer? But they had the answer for you.

Speaker 1: 38:38

Yes, every little minor health issue that I've had since then, everyone's got an opinion and oh, jamie, you should try this, you should do this. Oh, when did you get your medical degree Right? Again, I know everybody means well, I try to just absorb it. Thank them. Now, a lot of people did. When I did share my news back in December 2021, what I wasn't expecting.

Speaker 1: 39:07

What really overwhelmed me was the amount of private messages I got back about people's own personal journeys or their family journeys and how they dealt with it. And thank you, jamie, for being brave and sharing your story and for really making patient advocacy the focus of your message. Because, yeah, that's something that a lot of people don't understand that it's okay to ask questions, it's okay to ask about your options. They wanted me to start chemotherapy right away, in December 2021. And I said no. I said my birthday is in December, it's Christmas, it's going to be my last holiday season with my dad and, don't forget, I've got the critical illness policy.

Speaker 1: 39:57

Part of that is the second opinion report, so I would like to go through that before I make any decisions about treatment. Thank God I did the second opinion report. It was sent down to Dr North Carolina. He confirmed the diagnosis slightly different term. I got a 28 page report back. Thank God I read it twice because the second time through before a follow up appointment with the oncologist. There was one line in there about how chemotherapy typically has little to no impact on my particular diagnosis because it's a low grade tumor. So I went to my follow up meetings, asked my oncologist about that, asked the general surgeon about that. Oh yeah, we agree with that.

Speaker 2: 40:45

Oh my God, and you didn't think to tell me this yeah, we're going to talk about this, while you were encouraging me to go ahead and start the chemo.

Speaker 1: 40:56

Yeah. So I've held off on chemo and instead I've been working with a naturopathic doctor doing vitamin CIV. Because apparently cancer cells can't handle high doses of vitamin C, I switched up my diet, became vegan back in October 21, because plant-based diet helps you to have your system to be more alkaline. An alkaline system again helps to fight off the cancer cells and or prevent it from spreading, whereas an acidic system is a breeding ground for cancer to grow and spread. And through doing all this I do what's called observations. So every 90 days I go in for another CT scan of blood work and the cancer has mostly been contained, Again because it's low grade, not rapidly growing or spreading. So again, it's just really important to ask a lot of questions, understand all your options so that you can make the best choice for yourself.

Speaker 2: 42:02

Yeah, it is. It's a great thing that you insisted on that second opinion. I mean, can you imagine?

Speaker 1: 42:12

Yeah, and the fact that something made me read the report again and I cut that one line in a 28-page report.

Speaker 2: 42:19

Yeah.

Speaker 1: 42:20

Like Dad was watching over me and made sure I caught it.

Speaker 2: 42:24

Yeah yeah you really do have to take the initiative and do all the reading and ask all the questions and just do some research so you know what kind of questions to ask. You know that's another aspect of it. Sometimes we just don't even know the questions to ask when we're sitting there. But to be able to insist on that second opinion, take the initiative to do all of that reading and to make sure that you understood what all of it was saying, I mean, that is a huge, huge piece of being able to just, even though you're not 100% in control of what's happening to you, you know there are some decisions that you can make based on the information you're given, and so you really want as complete of a picture as possible so that you can make that decision for yourself.

Speaker 2: 43:16

I can't emphasize that enough, because I did the same thing after looking at the numbers and having a bunch of conversations with different doctors, and then I felt I felt confident, you know, in that decision. I know a lot of women who have the exact same stage breast cancer that I had and they chose a different path. They decided to do the chemotherapy and they went down a much more. You know, to me I don't want to use the word scary, but that was concerning to me, you know, I just didn't see the benefit of going down that path. So just to have a complete picture, you know, is critical at that moment in time.

Speaker 1: 43:59

So yeah, but you're not yeah, that's just it I said to them. I said I already have a weakened immune system. I don't want to be pumping poison into, just to prove you all right. If you don't think, it'll have much of an impact.

Speaker 2: 44:16

That's right. So I had a big decision to make. You know, I remember when I was diagnosed I had gone to get a mammogram and it was a. It was a follow up mammogram because the first one came back questionable. So like, okay, come back in like about six months and we'll do another one. And so I got the scans done. I went home a couple of days later I got a notification that you know, on my chart, the app, the scans were in, and I didn't think anything of it. This is what I did every single time. I looked at the scans and I'm reading it and there were. There was language in there I didn't understand.

Speaker 2: 44:53

I called the doctor's office and the poor woman who answered the phone I said hey, I just I got my scans back and there are a couple of questions I have. Is the doctor available? And she's like well, he is here, but what kind of questions do you have? And maybe I can, you know, just relay it to him because he's getting a bunch of patients today. I said, well, I'm just not familiar with you know, what does Carson Noma mean? That's the first time I've ever seen this. And she got really quiet and she was like hold please. And then my doctor got on the phone and then that's when we have that. He explained it to me. So that's how I found out was just because I was digging into my own files and asking the questions. But better to be informed uninformed, I guess. Make the phone call explain it to you, rather than wait until I don't. Who knows when he would have gotten back to me. I don't know.

Speaker 1: 45:50

Yeah, like things slips through the cracks and most hospitals or clinics have apps now. So, yeah, it's important to create profiles so you know when all your tests come back and you can proactively follow up if you're not hearing back from them in reasonable moment of time. And, yes, some of like obviously the healthcare system, all of the jargon that is used. Yeah, I read the reports and then I'm like, okay, can I get this in English right?

Speaker 2: 46:26

Let me open up my medical dictionary as I'm reading through this report.

Speaker 1: 46:31

I'm not going to copy pastes into Google and translate from medical to English just yet. Yeah yeah, I need some help.

Speaker 2: 46:39

Did you keep everything like in a three ring binder? Because I have one of those. I have a three ring binder that even to this day I just kept everything in it and it actually was a good thing, because I have an aunt who was recently diagnosed with cancer and her doctor asked her because she told him you know my history and he asked her if I had a genetics test and I did and I was able to go back into my three ring binder and finally found it. You know, after remembering, because I asked all of my doctors if they had a copy of it, nobody in the hospital could find a copy of my genetics test because I guess they changed over owns the hospital now and things slipped through the cracks and you know, for whatever reason, they didn't have it. But thank God I have that three ring binder that I kept a hard copy of everything in because I was able to find my genetic, my genetics test, just the other day. Do you, do you have your, your, your binder at the ready for such occasions?

Speaker 1: 47:43

I have a digital binder. So again, between the app and online, I'll log in on my laptop Every time I get reports back and save it as a PDF into my health folder on my laptop and just back up my laptop. So yes, it should be there forever. But, to your point, if something happens or the upgrade change, systems, information gets lost. I've got everything saved.

Speaker 2: 48:14

Yeah, I tell you this is turning into a how to type of episode. So what do you do if you get diagnosed? You know we have all kinds of great advice here. I'm going to say if your friend gets diagnosed, I think we have all kinds of wonderful golden nuggets for anyone who is up, because it's not an easy thing For anybody. This is not easy to deal with. I do know that we're starting to run short on time. I mean, we've already been talking for almost 50 minutes now, which is insane to me because this is gone by really, really fast. I want to go ahead and wrap up this episode, but before I do so, what's the thing that you would want to say to our listeners? Any parting words of wisdom or motivation that you would want to share with them?

Speaker 1: 49:08

My top tips, jen, are it's really important to maintain a positive mindset and, as we've discussed, I realize that can be harder some days than others. But be thankful every day that you wake up and try to only worry about what you can control, because if you focus on everything that you can't, that will just drive you bonkers. And the other most important thing that has worked for me, I would say, is the whole patient advocacy part being organized asking lots of questions, prepping for every appointment, no, and making notes. Like every doctor who comes in. I'm like sorry, what was your name again? And they always show me their photo ID so I can grab their name. So I make a note of every doctor I meet and talk to you. Normally it's multiple doctors because the hospital I'm dealing with is a teaching hospital, so I just grab everybody's name, lots of notes and, again, always ask questions and if you're not sure about your options or the test that will run, why they will run the outcomes, ask questions. You're the patient you've got the right to know.

Speaker 2: 50:31

Absolutely Fantastic advice.

Speaker 1: 50:33

Ask and take control, nobody else will.

Speaker 2: 50:36

That's right, that is 100% correct right there. So don't be afraid, don't be afraid to take control. Well, jamie, this has been absolutely wonderful. I'm so happy to see you and to be able to have another conversation with you and, you know, I'm just so happy that you look like you're doing well. It seems like you know you're just you're not just hanging in there, you are actually actively doing what you can, focusing on the things that you can control, and eating healthy and and you're. Are you still working out? Are you still going to the gym?

Speaker 1: 51:12

Lighter dumbbells and still working at home.

Speaker 2: 51:15

Yeah.

Speaker 1: 51:16

Thank goodness for the Peloton app.

Speaker 2: 51:18

Yeah.

Speaker 1: 51:19

So my native Friday I do my strength classes and then I hop on the bike a couple times. Yeah, that is another thing that really helps me with mindset and gives me positive and focused and gives me energy to keep going. Yeah so find something that you love, that's important to you, that you can focus on and do.

Speaker 2: 51:42

That's right. That's right and bring some joy in the midst of that storm. Got to be able to reach for that.

Speaker 2: 51:50

All right, friend. Thanks again. Wonderful seeing you, and I will be seeing you again because we'll have round two down the road and then we'll have some conversations about financial planning and what do those conversations need to sound like? You know, amongst family members, because very, very important thing to have a conversation about. All right, everyone. I hope that you found this episode to be useful. You know it's not an easy conversation to have, it's not a fun topic to explore, but unfortunately it is a reality of life and we know so many people who have been diagnosed with cancer and many survivors and many who are actually actively going through their diagnosis right now. So be blessed and, like Jamie said, when you wake up, be happy. You have another day and try to make the best of it. That's all we can do. All right, everyone, take care of yourselves and we'll see you next time. Bye, thanks for listening. If you enjoyed this episode and you'd like to help support the podcast, please share it with others, post about it on social media or leave a rating and a review.