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Amelia O’Relly: Overcome Hardship & Create a Better World for Others · The Bold Lounge

• 0:05
  SPEAKER_00: Welcome to the Bold Lounge Podcast.
• 0:08
  SPEAKER_00: My name is Lee Burgess and I will be your host.
• 0:11
  SPEAKER_00: If you're anything like me, you love hearing inspiring stories of people who have gone on bold journeys and made a positive impact in the world.
• 0:18
  SPEAKER_00: This podcast is about those kinds of stories.
• 0:21
  SPEAKER_00: Every week we hear it's taken away.
• 0:26
  SPEAKER_00: In addition to hearing their stories, they face away their goals.
• 0:39
  SPEAKER_00: These impact stories will be so motivated and inspired to pursue your culture.
• 0:44
  SPEAKER_00: I believe everyone has a bold story waiting to be created.
• 0:48
  SPEAKER_00: Tune in and get ready to be inspired.
• 0:54
  SPEAKER_00: Hello everyone.
• 0:55
  SPEAKER_00: Welcome to the Bold Lounge Podcast.
• 0:57
  SPEAKER_00: And today I'm excited to have Amelia O'Reilly, a highlighted guest and someone you're definitely going to want to meet and hear about her bold journey.
• 1:05
  SPEAKER_00: Today, as I introduce her, I want to let you know she is the founder of How to Breast Cancer.
• 1:10
  SPEAKER_00: And also you can find her at breastcancerguide.com.
• 1:14
  SPEAKER_00: Welcome to the show.
• 1:15
  SPEAKER_00: How are you doing, Amelia?
• 1:17
  SPEAKER_01: Thank you so much for having me.
• 1:18
  SPEAKER_01: I am doing really well, and it's a pleasure to join you today.
• 1:22
  SPEAKER_00: Excellent.
• 1:23
  SPEAKER_00: So we always start off with thinking about our definition of bold.
• 1:27
  SPEAKER_00: And you definitely have a bold story to tell, and I'm excited to jump into that with you.
• 1:32
  SPEAKER_00: But how would you define bold?
• 1:35
  SPEAKER_01: I love the question of defining bold, and I like to use often the individual initials to help frame a description for myself.
• 1:44
  SPEAKER_01: And I so if I take the you know each of the letters, I would say I am a brave overcomer living daringly.
• 1:52
  SPEAKER_01: And that's how I define bold, because each of those pieces kind of shape a broader definition and really give perspective as to how I look about this definition and how I think about the word bold.
• 2:06
  SPEAKER_00: That is an incredible acronym.
• 2:08
  SPEAKER_00: You know, we've talked about loving acronyms.
• 2:11
  SPEAKER_00: Yes.
• 2:12
  SPEAKER_00: I love that.
• 2:13
  SPEAKER_00: So we brave overcomer living daringly.
• 2:17
  SPEAKER_00: That's it.
• 2:17
  SPEAKER_00: So this lives a great segue into your life and to your journey.
• 2:23
  SPEAKER_00: We can think about where best to begin with your story.
• 2:26
  SPEAKER_00: Where would you start with your bowl journey?
• 2:29
  SPEAKER_01: I think there are parts of my bowl journey that probably stem from my early childhood experiences, right?
• 2:37
  SPEAKER_01: So at the age of nine, my family and I immigrated from Cuba to the US on the Mario boat lift.
• 2:44
  SPEAKER_01: And early on, I think for me, the notion of having to understand how to acclimate to change and how to take things and overcome things that are that are challenges kind of became an early core part of who I am as an individual.
• 3:01
  SPEAKER_01: But if we fast forward from that experience, and one day I hope to tell that story and in detail, but if we fast forward from that experience, I think for for today, I want to focus on this second journey that I'm beginning in my life, which is what led me to create this organization of how to breast cancer.
• 3:22
  SPEAKER_01: And it's really based on the trajectory of 2019 to the present when I was diagnosed with stage four metastatic breast cancer out of nowhere.
• 3:31
  SPEAKER_01: And over the last three years, I've been on a rather fast path to try to get the disease under control, both through chemotherapy as well as ongoing treatment.
• 3:43
  SPEAKER_01: And in that process, through just a number of hurdles and challenges, I had to pivot from what was my former career and a life that I had lived in corporate America for over 20 years and focus on this new path and how I could begin that path with the experiences that I've especially encountered in the last three years over this diagnosis and complexity of the illness and how difficult it has been for a number of reasons.
• 4:14
  SPEAKER_01: And so when I heard about your organization and this intention that you have around showcasing how to be bold and how to take that step, I think for me, the boldness has come from not only trying to get a handle on the illness itself, which thankfully, thankfully we've done, but also to pivot into something unknown to me and try to do something better for the people that can benefit from my own experience.
• 4:45
  SPEAKER_01: So that's part of where I think the bold journey begins.
• 4:50
  SPEAKER_00: Most definitely.
• 4:51
  SPEAKER_00: Let's go back if you're okay to 2019.
• 4:54
  SPEAKER_00: And we've talked a little bit about what you did when you initially were diagnosed, and you were like a warrior.
• 5:00
  SPEAKER_00: Well, you are a warrior, you're not like a warrior, you are a warrior.
• 5:03
  SPEAKER_00: Thank you.
• 5:03
  SPEAKER_00: Yeah, thank you.
• 5:04
  SPEAKER_00: So tell us about what the trajectory from even 2019 into 2020, which of course was the height of the pandemic.
• 5:12
  SPEAKER_00: What was that like and what did you do?
• 5:14
  SPEAKER_00: And then sounds like you made a pivot towards something different.
• 5:19
  SPEAKER_00: I did.
• 5:19
  SPEAKER_01: And so 2019, getting my diagnosis, and the diagnosis came as a complete shock to me because I'd always been very diligent about my screenings, and I also didn't have the history of this illness in my family, no medical conditions to really give me any cause for concern.
• 5:39
  SPEAKER_01: But when I discovered the lump and then quickly moved into the tests and everything that comes with that so fast, because you have to move quickly in order to be able to get a handle on this.
• 5:52
  SPEAKER_01: And so we did that.
• 5:53
  SPEAKER_01: And I was confirmed with stage four metastatic breast cancer.
• 5:58
  SPEAKER_01: And so you have to kind of get past that shock and move into what do you have to do?
• 6:02
  SPEAKER_01: Because we knew that it was very aggressive, so much so that by the time I was diagnosed, it had already spread to other parts of my body.
• 6:10
  SPEAKER_01: So that just gave a sense from one year to the next to go from perfectly fine to not at all.
• 6:16
  SPEAKER_01: So I think for me, jumping into the actual aggressive chemotherapy that was the first six months of that journey and having to grasp everything that comes with that and really prepare yourself for that, which there isn't, in my opinion, enough available for anyone that goes from zero to all of a sudden eight million miles per hour to really help you understand what to do and how to get to a place that you can live and continue to live your life as best as possible.
• 6:51
  SPEAKER_01: It's a really, it's a really hard thing to grasp.
• 6:54
  SPEAKER_01: The complexity for me was also that in spite of the fact that we did that super aggressive chemo for six months or so, the minute that we stopped, because we thought we could move into the next phase, which is that that treatment uh maintenance, if you will, the cancer immediately came back.
• 7:11
  SPEAKER_01: And so that was something that I did not anticipate, and frankly, neither did my doctors.
• 7:18
  SPEAKER_01: They they thought at that point we would recognize just the aggressiveness trait that this particular strand happened to have.
• 7:26
  SPEAKER_01: And so we had to then move into what's the next treatment and the next treatment, and it would take, frankly, almost a full year of that with it continuing to resurface or to not or to show up in a different way before we would finally find a treatment that could stop the progress.
• 7:49
  SPEAKER_01: But when you're describing kind of going into from 19 to 20, you're right.
• 7:53
  SPEAKER_01: I mean, 20 was a complex year for the world on a macro level with the pandemic.
• 7:59
  SPEAKER_01: And I was still working, and I was working in a corporate role, I was working in a major corporate public company corporation leading uh a human resource function that in many cases had to shoulder the responsibilities of how to get an organization ready and to navigate the pandemic that we had never experienced in our lifetime, certainly.
• 8:20
  SPEAKER_01: And so, in the midst of all that, which I was doing, I was also trying to get a handle on this cancer that would not go away.
• 8:30
  SPEAKER_01: And it it would be, and the way that it works when you're doing that is you have to try a different treatment, but you had to try it for a window of time to see whether it works.
• 8:40
  SPEAKER_01: So it's not something that you can adjust in a couple of weeks, it's a couple of months.
• 8:44
  SPEAKER_01: So you try a new treatment for two or three months, that's not working.
• 8:48
  SPEAKER_01: Next treatment, two or three months, and the entire time, what you're doing is you're receiving every three weeks a different type of chemotherapy that you are hopeful will be able to yield success.
• 9:02
  SPEAKER_01: And it was not in every case, it was not doing that.
• 9:05
  SPEAKER_01: So, seven, seven different ones before we would get to the one that would.
• 9:12
  SPEAKER_01: But by then I was in so much physical pain because that's what starts to happen, is the body starts to really have a difficult time with everything.
• 9:22
  SPEAKER_01: And because of that difficulty, and because of the fact that it was continuing to worsen, I had to step away from what I now refer to as my former career because there was no way that I could continue to do what I was doing, and we were running out of options.
• 9:41
  SPEAKER_01: And so that was the other pivotal point, is that we didn't know how many more things we could do before you basically move into just palliative care and basically try to live as comfortably as you can for however long that may be.
• 10:01
  SPEAKER_01: That's the point that we were at, nearing at the at the almost end of 2020.
• 10:07
  SPEAKER_00: So let me ask a couple of questions, a couple of things to unpack there.
• 10:10
  SPEAKER_00: So there's obviously a tremendous amount of change, and I think you said 8 million miles per hour.
• 10:15
  SPEAKER_00: And I think unless you're walking in your shoes, no one can say, I know how that feels, right?
• 10:22
  SPEAKER_00: So I'm real big on not saying those things, but I can only imagine the amount of you know shifting and thinking, and like you said, you went from being healthy and doing your annual checkups to stage four metastatic, and you want to throw everything you can at it, but then you have to give every one of those pieces time to actually work.
• 10:43
  SPEAKER_00: It's not like you can go, and like I think some of that is like being patient, so like there's a lot of change there, there's a lot of mindset.
• 10:51
  SPEAKER_00: So I've heard people even say at times that they actually, when they hear this news, they actually have to step outside themselves, like almost looking at the situation from above and almost disconnect with the person, but think about it from a different level.
• 11:05
  SPEAKER_00: Does any of that resonate with you?
• 11:07
  SPEAKER_00: And and which one is important for folks to understand the most?
• 11:12
  SPEAKER_01: That absolutely resonates with me.
• 11:15
  SPEAKER_01: I think for me, the the process of understanding what was being said to me by the doctor at the very beginning.
• 11:24
  SPEAKER_01: And I was very fortunate to have a very strong support system.
• 11:28
  SPEAKER_01: My partner, my sister, immediate family and friends, that's really, really important because they all play a different role as you're navigating all those emotions.
• 11:40
  SPEAKER_01: But what you've said now is exactly right.
• 11:42
  SPEAKER_01: You feel a certain detachment that you have to do from the situation so that you can even try to see the pieces of it and understand which pieces require more of your time and energy than other pieces.
• 12:00
  SPEAKER_01: And those pieces are usually emotions.
• 12:04
  SPEAKER_01: So, so for me, it was part of my corporate project management type of skill sets that allowed me to compartmentalize some of this at the beginning so that I could understand how to manage my emotions and understand that it is life and death decisions that you're making.
• 12:27
  SPEAKER_01: And most people go into that having no experience and having done it to your very point.
• 12:34
  SPEAKER_01: You could either have experienced it if you unfortunately had a dear one that went through it before you, or if you have read some things about it, but most people don't have any of those.
• 12:48
  SPEAKER_01: I didn't have any of the experience to deal or cope with all of those pieces.
• 12:53
  SPEAKER_01: So for me, it was it was trying to look at it almost as if it was this puzzle that I was trying to put together.
• 13:04
  SPEAKER_01: And when you're putting together a puzzle, you have to focus on what is the ultimate image that is going to emerge from all these pieces, as opposed to a particular piece that you may be holding in your hand.
• 13:18
  SPEAKER_01: It's probably the best description that I can give it because it feels like that.
• 13:23
  SPEAKER_01: It's all of a sudden all these things are thrown in the middle of the table and you have no idea how to do it.
• 13:28
  SPEAKER_00: No, the diagnosis piece, right?
• 13:30
  SPEAKER_00: Like so you're holding the diagnosis.
• 13:32
  SPEAKER_00: But that's not the picture we're going to look at, right?
• 13:35
  SPEAKER_00: Yeah, no, I love that analogy.
• 13:37
  SPEAKER_00: Yeah, so it's just a piece of the puzzle, is what you were working with, and to actually come up with solutions and understanding more deeply what you needed to do, and actually having some analysis aspects of that and being able to review it, you needed to actually detach from it from an emotional standpoint.
• 13:54
  SPEAKER_00: And sometimes that's usually the tether that we need to let go, and it's not easy.
• 13:59
  SPEAKER_00: It's not, it's not easy.
• 14:02
  SPEAKER_01: It's not, and I think part of it is also the fact that there aren't necessarily always the guidebook, if you will, for people to really understand some of that.
• 14:13
  SPEAKER_01: So what you receive from your doctors are pamphlets and and perspectives of things that could occur, but it isn't always in a way that gives you a better, an easier context for what could happen or how you can navigate those pieces.
• 14:33
  SPEAKER_01: And I think as I was starting to go through all this, that would be what would later serve to make me reflect and say, what can I do for someone else that would be better than what I had?
• 14:45
  SPEAKER_01: I've had excellent care, excellent care, but there's a separation between the quality of care and the support infrastructure for that patient as they're navigating the care.
• 15:00
  SPEAKER_01: There is a that there's a big difference.
• 15:02
  SPEAKER_01: And I think a lot of times the patient's experience on how do you really onboard, how do you really understand all the things that are about to happen, could or could not, that part sometimes for many, many patients is there's a gap.
• 15:16
  SPEAKER_01: There's a big gap there, and that gap needs to be filled.
• 15:19
  SPEAKER_01: And also the importance of having, if you if you have, even if you have a support system, to also have a psychological support system, because psychological support as part of the cancer treatment journey is an important and I would say a critical part, as critical as the medicine that you are receiving to treat the disease.
• 15:45
  SPEAKER_01: And that also helped me.
• 15:47
  SPEAKER_01: So if you, if you, you know, to your question about what were the things that you have to use to help you detach and to help you kind of keep a balance, having a therapist as part of my treatment journey, which I did, was something that really helped me, especially when we began to have all the failures from the treatments, which you don't anticipate that's going to happen.
• 16:11
  SPEAKER_01: As a patient, you think you're gonna have this super aggressive chemotherapy, it's going to kill the cancer, and then I have an ongoing maintenance thing that I do.
• 16:20
  SPEAKER_01: When that doesn't happen, and when it fails repeatedly, as it did in my case, through no fault of the quality of care, by the way, it at that point it is about chemistry, it is about the right chemical component attaching to the right cell.
• 16:36
  SPEAKER_01: And when that doesn't work, you start failing, you know, in all these treatments.
• 16:41
  SPEAKER_01: So you feel that you're failing.
• 16:43
  SPEAKER_01: You feel literally like you're failing as a person.
• 16:45
  SPEAKER_01: And to not have a tool or you know, a means to be able to get underneath that through a psychological side, the psychological side of cancer management is such a big part, it can compound the adverse impact that you're otherwise feeling.
• 16:58
  SPEAKER_00: So, from the perspective of going through that cycle of trying something and coming back to it and realizing it's not working and it's failing, and then going again, having as much support around you as possible to tuck into some of those gaps is very important.
• 17:14
  SPEAKER_00: And and I want people to hear we're talking about in an extreme, you know, diagnosis that you are dealing with and continue to tackle and warrior through it and be able to help others with this.
• 17:27
  SPEAKER_00: Correct.
• 17:28
  SPEAKER_00: But a lot of the things you're saying we could use in our really simple day-to-day type of things as well.
• 17:33
  SPEAKER_00: So you can extrapolate this case and take it down into you know our day-to-day things that are trivial compared to to what you've experienced.
• 17:42
  SPEAKER_00: So it's having a mindset, being able to detach, and if it's emotionally detached, to be able to see the big picture, right?
• 17:48
  SPEAKER_00: I think that's key here.
• 17:50
  SPEAKER_00: Having support system and being able to identify who your partners are as you go through something like whether it's a diagnosis or a change or a pivot or a loss.
• 18:01
  SPEAKER_00: There's so many things that I've heard and different stories that people have shared.
• 18:05
  SPEAKER_00: I think there's a lot of things that you could extrapolate out of there.
• 18:09
  SPEAKER_00: I love the imagery of what the big picture is and being able to see that, you know, maybe someone lost their job.
• 18:15
  SPEAKER_00: They're holding the I lost my job puzzle piece today, right?
• 18:18
  SPEAKER_00: So what does that look like?
• 18:20
  SPEAKER_00: But that's not the whole puzzle.
• 18:22
  SPEAKER_00: So I think, you know, that's what I love about your story, not only because what you're doing and how you're helping others, which we're gonna jump into, but you can use these tools and the strategies that you use for the simplest of challenges.
• 18:34
  SPEAKER_00: And I say simple because your life is probably the most important uh thing, you know, and a lot of the challenges we have daily are not life or death, and sometimes it may feel like exactly, but it's not mindset piece to this is really important too, which I like to talk through.
• 18:51
  SPEAKER_00: So, so you got to the point where something worked.
• 18:54
  SPEAKER_00: Yes, no, was it was it treatment number seven?
• 18:57
  SPEAKER_01: You know, it was it was treatment number eight, so we had eight, okay, all right, seven failures, and then number eight was the success, you know, it was like being pulled back from the brink because it really was it was that was in 2020, 2020, December of 2020.
• 19:15
  SPEAKER_01: We were finally that was the one, and this was one that had been approved just a few months prior, so it was not in my toolkit of options earlier on because it wasn't available, and also because it was getting empty approval, right?
• 19:33
  SPEAKER_01: And so, and it was also not in the linear sequence that in other words, we had not exhausted enough of the other preceding options to get to it as well.
• 19:43
  SPEAKER_01: That's another part of treatment, is usually when you are able to access medicine X or Y, there is a sequence of other medicines preceding that are available to you to use and they've been tested for a lot longer.
• 19:56
  SPEAKER_01: That's the other, that's the other, you know, tale of this is there's far more data on a medication that has been used for multiple years versus a brand new one, right?
• 20:05
  SPEAKER_01: So that's part of the piece.
• 20:07
  SPEAKER_01: But we finally got to this one.
• 20:10
  SPEAKER_01: And again, back to the comment you made earlier around the detachment side, you know, you start to look at your life in so many different angles because you feel like you're at, I felt like I was at the edge of that cliff, and that's where we were.
• 20:22
  SPEAKER_01: And to have something that was either going to work or not.
• 20:26
  SPEAKER_01: And if it was not going to work, then then there were choices obviously beyond that point.
• 20:30
  SPEAKER_01: But I was already at that, you know, point of exhausting so many options that it was that big gamble that we knew we had to take.
• 20:38
  SPEAKER_01: And so we took it and it worked.
• 20:41
  SPEAKER_01: And it is the treatment that I have still I've been on ever since, and I I continue to be, as it, you know, thankfully has contained everything and has gotten me to no evidence of disease, which is the that's the ultimate goal that you want to get to.
• 20:56
  SPEAKER_00: That's what you want to hear every single time you go in.
• 20:58
  SPEAKER_00: That's what you want to hear.
• 20:59
  SPEAKER_00: That's what you want to hear.
• 21:00
  SPEAKER_01: No evidence of disease, you know.
• 21:02
  SPEAKER_00: Yeah, yeah.
• 21:02
  SPEAKER_00: So that's the goal.
• 21:04
  SPEAKER_00: So you had a lot of choices, right?
• 21:06
  SPEAKER_00: Not only choices in treatment, and that's stressful in itself because for those that don't know, I spent a lot of my career in research operations, and the intention specifically within cancer is to have as many options as possible because every person is different.
• 21:20
  SPEAKER_00: Exactly.
• 21:20
  SPEAKER_00: But there's a lot of choices.
• 21:22
  SPEAKER_00: You also had a choice around your attitude, yeah, and how you were going to deal with it, and then I think where you were going to focus.
• 21:29
  SPEAKER_00: So those are the three that come into my mind, you know, like what are your options?
• 21:33
  SPEAKER_00: And your your case, it's just what treatment do you choose?
• 21:36
  SPEAKER_00: How do you choose your attitude about what's happening?
• 21:40
  SPEAKER_00: Because sometimes I feel we could go in a in a space where this is happening to me, and what do I do?
• 21:46
  SPEAKER_00: And a lot of that, you know, and it's natural for people to feel that way, it's not a bad thing.
• 21:51
  SPEAKER_00: But how do we kind of get ourselves out of that to know okay, we have to take action, which you did, and then the other thing that I hear is the focus, like you.
• 22:00
  SPEAKER_00: were focused on not only helping yourself but it sounded like you were like collecting like what wasn't working because we talked a little bit about when you go on and Google after you get a diagnosis it is well one it's probably scary and it's also probably not as validated and helpful as you think it may be.
• 22:21
  SPEAKER_00: Right.
• 22:21
  SPEAKER_00: And there's a gap between when you're getting treated and then when you're surviving.
• 22:27
  SPEAKER_00: Tell me a little bit about kind of as you've gone through this experience and now that you actually have created the the breast cancer guide what did you create to fill that gap?
• 22:36
  SPEAKER_01: As I was going through this, I was aware of what was missing for me.
• 22:41
  SPEAKER_01: I had this intense focus but I also continued to realize that there were so many things missing for me as a patient by way of information and by way of synthesized information.
• 22:57
  SPEAKER_01: Because when you Google things about breast cancer as you said you know there's there's so much out there to me it's the equivalent of a non-swimmer walking into the ocean because you feel like what is this right so and I don't swim so I can relate to the walking into the ocean right it's like it's so much or you don't even know where to go.
• 23:17
  SPEAKER_01: And for me it I believe that that non-swimmer walking by the ocean should be able to see little kiosks of information if you will that you can walk up to and say I understand this is about pre-diagnosis.
• 23:32
  SPEAKER_01: What should I know?
• 23:32
  SPEAKER_01: What are the minimal things I need to know to at least feel organized and and be well educated what happens once I get ready to start my treatment what should I think about what should I know about there was so much that I did not realize about starting treatment or staying in treatment or people that are in treatment for the rest of their lives.
• 23:51
  SPEAKER_01: And having those stops if you will I think as a patient is something that I started to see the possibility that I could lend through my experience, I could shed light on that in a way that was manageable, that was easy to understand, that also gave the person the ability to pace themselves because many times as was the case for me, you're giving a binder or you're given a a box to start with a number of things in it, but you don't know what you're doing and you you you don't necessarily always have the wherewithal to know where to even go.
• 24:32
  SPEAKER_01: And so if you're able to to go to a single place that has that thoughtfulness of approach and the information is provided to you from a patient speaking with you as a fellow patient, then already you feel a little bit safer and you feel a little bit more heard and seen than if you were just going to any organization or just relying on what is being provided by way of a pamphlet in your doctor's office.
• 25:02
  SPEAKER_01: And so my intention as I was going through all of this was, you know, in the back of my mind I was thinking there's so much information here but I was also admittedly so completely entrenched in the issue that was presented to me which was the fact that none of these treatments were working.
• 25:18
  SPEAKER_01: But this little voice in the back of my mind kept thinking it would be great if somebody had told us about the questions that we should be asking.
• 25:24
  SPEAKER_01: It would have been wonderful if somebody so I was aware of it.
• 25:27
  SPEAKER_01: But it wasn't until we started to see better response from the treatment and that really did not happen until I would say roughly March of 2021.
• 25:38
  SPEAKER_01: So we were about three to four months into the treatment and that's usually the key point where you realize if it's working or if it is not we had seen some physical improvements already because at the time that we began the treatment towards the end of 2020 the cancer had also spread to my skin.
• 25:57
  SPEAKER_01: So there were a lot of things that were going wrong that if resolved we could see some resolution even before that three or four month mark of doing the the scans.
• 26:09
  SPEAKER_01: So I started to feel better around March of 2021 and I started to have far less physical pain.
• 26:16
  SPEAKER_01: And that's when it started to become a little bit more of my focus is this notion of this voice that I was kind of hearing about all these things that could be better for patients.
• 26:27
  SPEAKER_01: How do I take that and begin to create something that could serve in that capacity.
• 26:34
  SPEAKER_01: And so that's when I started to think about do I do a blog?
• 26:38
  SPEAKER_01: Do I write a guide for this as a physical book?
• 26:42
  SPEAKER_01: What do I do?
• 26:43
  SPEAKER_01: And the idea of creating this online website that could have a little bit of all of that spring into my mind.
• 26:50
  SPEAKER_01: And so then over the months that followed I began to construct what that would look like and that's where the breast cancerguide.com emerged.
• 27:01
  SPEAKER_01: And again throughout all that I was still and I still am going to treatment but the difference was that I started to not have the degree of physical pain and and and I could clear my head a little bit to start to create this work.
• 27:16
  SPEAKER_01: The challenge that happens a lot of times is for a patient with metastatic that has to be on lifelong care, every three weeks you're getting some form of chemotherapy so you are unwell for likely up to a week.
• 27:29
  SPEAKER_01: And so for many of us in that you know group you usually end up leaving your career or or your former job because you're not able to keep up with the fact that every three weeks you're going to be out for a week or so even with the best of minimal side effects it's still a few days that you're down and most places unfortunately don't accommodate for that which I think is a is a disappointment because there's so many talented people that could still contribute in a really significant way if there could be some modifications to the way in which they can work and still stay on treatment.
• 28:05
  SPEAKER_01: And so for me knowing that I that my past was exactly that in the past I wanted to create something where I could take my skill sets and my experience as a patient and make a better way forward for the people that are going through their journey or that are still in it and could use some help that that's regular help as opposed to the initial help that you get and then everything drops off.
• 28:27
  SPEAKER_00: Yeah.
• 28:28
  SPEAKER_00: So there's a couple things in there big on visualizations and so really the challenge is the ocean.
• 28:33
  SPEAKER_00: It's as big as the ocean and you're not a swimmer you know it is and and people can feel like that about many different things.
• 28:41
  SPEAKER_00: And and so like I love the idea of taking this challenge and extrapolating out to insert your challenge right this again I think is on one end of the continuum but the way that you approached it was we need information that's customized and connected to the individual who's actually going through the journey being guided having a docent who's been through it.
• 29:04
  SPEAKER_00: So in the sense of having an authentic person who's been on the journey who understands what task when to maybe advocate more or maybe ask this question.
• 29:15
  SPEAKER_00: Because we all are like wow I wish I would have had right in my pocket.
• 29:18
  SPEAKER_00: And so your guide helps with that also helps with in some of the things that you talked about make sure you're having you know these pieces tucked around you like the mental health therapist and the and the connectedness to other pieces that help you leverage because you're learning throughout this I bet every step you're taking is like another if you think of the strata of a rock like just all the different learnings that you have that's creating the right treatment for you, the right path for you.
• 29:47
  SPEAKER_00: And you said something about it felt like everything was going wrong but you were still trying to figure out how to make it right and I'm paraphrasing there but I think that's something that we can also experience like everything I'm trying is going wrong or it feels like I'm failing but I still have to keep going right so what's your advice to people when things are going wrong but you still have to have a forward moving growth mindset that you're learning.
• 30:12
  SPEAKER_01: What's your advice to people who are in that situation where it just feels like there's no hope or they can't figure it out I think one of the things that got me through this and it's hard is finding something at least something for which to be grateful.
• 30:31
  SPEAKER_01: I cannot underscore how hard it is to do that in the midst of everything that is happening, whether it is a life and death situation or whether it is a situation that feels like is life and death to you because I think that I love how you're mentioning that there are principles of this that can apply to any component of someone's life that is a difficulty because difficulty is in the eye of the holder of that difficulty and people say oh you know things could be a lot worse or this and that I think to myself unless you're walking in the person's shoes just leave it to them to measure how difficult it is right because they're experiencing it head on right so whether it is a loss of some kind an illness or whether it's a challenge that that limits us I think finding at least one thing for which to be grateful starts to make you think about other things.
• 31:24
  SPEAKER_01: And then those little things they're they're small i mean they're like little tiny tiny uh you know sandmarks right but they help you to not only think about the thing that is not working.
• 31:38
  SPEAKER_01: And so for me throughout all the failures that were happening for a year and a half we were failing that's a long time to be failing but throughout that year and a half of failures I continued to say I am thankful for or I'm grateful for the fact that I was able to tolerate X treatment.
• 32:01
  SPEAKER_01: I am grateful and sometimes it was even simple things like today I was able to sleep today I was able to take my medications and it was just little things.
• 32:12
  SPEAKER_01: So I tried to find something that was related directly to the actual treatment and I also found things that were completely unrelated like receiving a nice card my partner's mother she's an amazing person and she would send me these little cards throughout the time and it would be sometimes something really funny something really inspirational.
• 32:35
  SPEAKER_01: And I'm grateful for that and so I think for anyone going through something significant it is really important and you're doing it for yourself to find something for which to be grateful.
• 32:45
  SPEAKER_01: And it's hard to do that in hard times believe me but it is helpful.
• 32:50
  SPEAKER_01: It is a helpful thing that you can do and you can do it without having to have anyone else help you necessarily because there are other things for which you're going to need help and people in your life will play different roles in that support system.
• 33:06
  SPEAKER_01: That's another key piece is whoever your support infrastructure is, they have different roles.
• 33:11
  SPEAKER_01: So I always say to people don't expect everything from everyone know that there are going to be different roles that they play in your life that are helpful to you.
• 33:20
  SPEAKER_01: But when you go kind of within your own little sphere finding something to be grateful for even in the midst of a really big challenge is something that you can do by yourself and it helps you.
• 33:34
  SPEAKER_01: And that's what I did.
• 33:36
  SPEAKER_00: It is hard so I I will underscore that a thousand times but it actually starts to help you move along excellent so I think as we finish out one of the key things is I want to make sure people understand what you have to offer and what how to breast cancer is all about so in a nutshell what would you like folks to know about the breast cancer guide and the work that you're doing?
• 34:01
  SPEAKER_01: So our organization How to breast cancer the breastcancerguide.com we are an online portal that is really intended to help anyone navigating a breast cancer journey whether you're the patient whether you're a caregiver whether you're a dear one with information that walks you through the various steps of the journey when we launched How to Breast Cancer, the intention was for us to fill in that space in the middle of a patient's journey if you will so when you think about breast cancer and what we know about breast cancer there's a lot of information about early detection and screening which is important and life-saving information.
• 34:45
  SPEAKER_01: There's also a lot of information on the other end of the spectrum which is survivorship and getting through to the other side also very important and very uplifting for people to know in the middle is that space of how do you really understand how to get started, what steps you take as you're going through your journey and what happens if you have to be on the journey for the rest of your life what tools can you get and how how do you navigate so that's the space that we want to be able to fill that void is for patients that are trying to understand how do I get started?
• 35:21
  SPEAKER_01: How do I maintain my treatment routines and the way that we do that is by providing tools and practices by way of articles as well as blogs that we publish and also are in our YouTube channel where we can provide instruction on how do you do this?
• 35:38
  SPEAKER_01: What are the steps that you want to follow?
• 35:41
  SPEAKER_01: What are the things that you should know or be mindful of along those steps because everyone needs and is benefited from having a guide that helps them get through anything they have to do in life whether it's how to assemble something or how to find a location or how to start a new job whatever it is the same applies when you're navigating something as complex as cancer.
• 36:06
  SPEAKER_01: So that's the space that we want to really focus on to dedicate our attention toward so that it can be easy to use it can be organized it can be bite-sized and also give patients and caregivers the ability to do that at their own pace.
• 36:22
  SPEAKER_01: That's a differentiator for us from what I know exists out there and from what I've also heard from people that are using our site or even the folks that we reach out to to form partnerships with, they all fundamentally agree with the fact that it is a space that is missing, but it is a space that is necessary and it has to shift from what today is a largely fragmented space with a lot of information all over the place to what we're creating, which is something that is very tailored for that patient and allows them to have those tools in a way that is easy for them to to digest and to use.
• 37:03
  SPEAKER_00: Yeah it sounds very logical and it's curated and it's also qualified.
• 37:08
  SPEAKER_00: I think that's the other piece to this is you vetted these resources and we had talked earlier about Googling and how no matter what's going on, it's never a good idea to Google that for health reasons.
• 37:20
  SPEAKER_00: To Google for your health yeah so I think that's the other thing is the the quality of the resource uh for those out there.
• 37:26
  SPEAKER_00: So thank you for describing that because I think that's important.
• 37:29
  SPEAKER_00: Thank you.
• 37:30
  SPEAKER_00: I think throughout today's podcast we've learned a lot.
• 37:33
  SPEAKER_00: I'm in awe of your fortitude and your attitude and your mindset.
• 37:38
  SPEAKER_00: Thank you and all the things that you've accomplished and are still accomplishing and going to accomplish and I think we also can take what you've learned through this journey and also apply it to our own you know we may not be battling what you're battling but we have our own things that we go through and I think there were definitely things that you talked about holding the puzzle piece and it not being the whole picture.
• 38:01
  SPEAKER_00: You know I love the idea of thinking something has an ocean and you can't swim and being able to walk into it with some with some floaties and some information.
• 38:11
  SPEAKER_00: So I really appreciate it because I think we can apply your lessons forward and then ultimately anyone who is going through breast cancer can learn from you and learn how to breast cancer which is really what you're you're all about.
• 38:24
  SPEAKER_00: So thank you so much for being on the podcast and for being a light for others and for all that you're doing.
• 38:30
  SPEAKER_00: Thank you so much for having me.
• 38:31
  SPEAKER_01: It's been my pleasure to talk with you today and it's an honor to be able to do this work.
• 38:35
  SPEAKER_01: So thank you.
• 38:39
  SPEAKER_00: Thank you for listening to the Bold Lounge podcast through the continuum of bold stories, vulnerability and taking the leap you will meet more extraordinary people making a positive impact on others through their unique and important story.
• 38:52
  SPEAKER_00: By highlighting these stories we hope to inspire others to share their journey with we hope you've enjoyed this podcast or to share