Ep 81: The Emotional Cost of Surviving Cancer (with guests Hollye Jacobs & Dev Meenagh)

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[00:00:31] Ever feel like different generations just don't get each other? Certified coach, licensed therapist, and speaker Tess Brigham tackles the generational challenges shaping our personal and professional lives on The Gen Mess with Tess. Hello everyone and welcome to The Gen Mess with Tess where we're not just fixing the mess, we're figuring out how to live in it. I'm your host Tess Brigham so let's start making sense of the mess together.

[00:00:56] And today I have a really interesting show. This was deeply personal for myself and my guests. I have two women on the show today where you're talking about cancer, breast cancer, what it's like to go through this process, and the importance of having community and people that you can talk to when you're going through something like this that's really difficult.

[00:01:21] I believe I've talked about it a little bit on the show, but I had breast cancer. I was diagnosed in 2021. My cancer was pretty gnarly though after talking to both of these women. Maybe it wasn't as gnarly as I thought it was. But you know, it was a year and a half and of procedures and surgeries and chemo and losing your hair and all of that and it definitely when you go through something like that it changes you.

[00:01:47] And the kind of support that you need from people, it looks different. And so I think these are really important conversations. So today my first guest is Holly Jacobs. She's a registered nurse, social worker, New York Times bestselling author and master certified resilience coach who has walked through cancer, grief, divorce and natural disaster, and come out the other side with a framework of what resilience actually means.

[00:02:11] Her book, her book, The Silver Lining, a supportive and insightful guide to breast cancer became a bestseller, not because it's a cancer book, but because it's a book about finding light in the darkest places. And what I love about Holly is that she doesn't just talk about this work from a stage or a clinic, right? Because she's lived it personally, professionally, and that combination is rare.

[00:02:32] And so she was kind enough to bring on someone who was part of an app that they both are part of. It's an app to connect people and caregivers, people who are struggling with cancer. We do talk about it in the show. But Dev Meenagh Meenagh is a cancer survivor. Dev is a cancer survivor in New York City. She has worked in early childhood education for the past decade, in addition to being a writer and a performer.

[00:03:00] She has two Siamese cats, loves escape rooms, and hates cancer. So hopefully you find this to be really, really fascinating. I found it to be a really interesting conversation. And whether breast cancer is something that you've struggled with or cancer, it's touched everybody in some way, shape, or form. And so I know everyone is going to get something from this conversation. Hello, Holly and Dev. Thank you so much for being here.

[00:03:30] And I'm very excited for our conversation today. So I'm just going to jump right in because the one thing that, from my understanding, the three of us have in common is we've all had breast cancer. And I think that until, I don't know what your experiences were like, but for me, I was in my late 40s.

[00:03:54] And I also naively thought, wait a second, my mother never had any issues. My grandmother, my maternal grandmother never had any issues. This lump couldn't possibly be cancer, could it? And then you realize, oh, wait, one in eight women get diagnosed. And then once you're diagnosed, it's this bizarre, this world opens up to you to people.

[00:04:18] And suddenly everybody that you know has either had it or had a mother or a sister or a wife or somebody that's had it. And so I'm really glad that we're all talking about it today because I think that it affects so many women. And there's just this idea of it is life-changing. It is, I mean, it is absolutely positively life-changing and it's life-changing in a lot of really positive ways. And then a lot life-changing, it's very difficult to get through.

[00:04:48] But I love, because I know you've written a whole book about this, Holly, and I love your work around resilience and seeing it as this thing. What can it teach us? How is it for us? So, Holly, I just want to start with you. Tell us a little bit about your background and what, you know, all that good stuff because you're also a nurse. Yep. Yeah, well, thanks so much for having me, Tess.

[00:05:10] I'm happy to meet you and being diagnosed with cancer certainly opens the door to a club that you never wanted to join. And then once you're in, you meet amazing people. Regarding my breast cancer diagnosis, I was 39 years old. I was healthy, happy. I was vegan. I ran marathons.

[00:05:34] I was a 39-year-old young mother with absolutely no family history like you, Tess, of breast cancer. And yet I was diagnosed anyway. And that's the thing about cancer. It doesn't wait for you to fit a profile. In my treatment, I went through a double mastectomy and reconstruction, four months of chemotherapy, 30 rounds of radiation,

[00:05:57] and then ultimately a total abdominal hysterectomy because mine was hormone positive. And then there was recovery, which I imagine we'll talk a lot about, and the unexpected collateral damage that came from that. Professionally, I'm a nurse and a social worker and author and a resilience coach.

[00:06:23] And I have a background working in the intensive care unit. And the primary focus of my work was in hospice, both adult hospice and pediatric hospice. So I found myself in this really unique position moving from the side of the bed as a healthcare professional into the bed as a patient. And it gave me a whole new perspective on what the experience was like. And I'm sure we'll talk about that. Yeah, absolutely.

[00:06:54] And how about for you? I have lots of questions about that. But how about for you, Deb? Tell us a little bit about your experience. So I had a bit of a different experience and an atypical one. I got diagnosed at 28. And every doctor I saw couldn't hide how sad that made them. But I actually did have a family history.

[00:07:20] My mom is a three-time survivor and was a three-time survivor at the time I got diagnosed. And it still came off as a complete surprise. Something that I talk to a lot of people about because I think it's kind of a medically misleading conversation is the genetics behind breast cancer. My mom did all of the genetic testing twice.

[00:07:46] When she first got diagnosed, she was about 45, which at the time was considered very young. And then she got it done again her third time. And both those times, they told her that she did not have any genetic indication and that it was not genetic cancer, essentially. And that signaled to us that I had nothing to worry about. And none of her doctors indicated that there was any concern for me that I should be getting screenings done, anything.

[00:08:16] So when I felt a lump, I knew immediately what it was. And it still came off as a complete surprise. And, you know, a couple of weeks of scans and biopsies, my mom was in a lot of denial during that time. And what we found out was that when they do genetic testing and tell you you're all clear, you don't have the genes, they mean you don't have one of the 12 to 15 genes that they're testing for. Because we do have a gene. It's just an undiscovered one.

[00:08:45] And had we known that, I would have been getting mammograms starting at about 15. One of the things that they told me was that my tumor had probably been growing for several years. We found it early, but just the way that that works and the fact that it wasn't on our radar at all and that no doctor has ever said it should be is alarming. And I meet a lot of people who say, oh, yeah, my mom or my aunt has breast cancer, but it's okay. We don't have the gene.

[00:09:15] And I'm the bearer of bad news that says it's actually not what you think. Wow. So, yeah. So that has been my experience. And following that, I got diagnosed at 28, rushed into treatment. I did IVF. I did chemotherapy, radiation. I did a lumpectomy, followed by hormone therapy, which I'm about five years into and continuing on for another five after that.

[00:09:44] Wow. So, Holly, you said yours was hormone positive. Is that Dev was yours also hormone positive? Yeah. Yeah. I got triple positive. So every hormone. Wow. So that was mine, too.

[00:10:01] And that was another thing that was surprising to me because in my, I don't know, I guess I'm a, I don't consider myself completely type A, but in my, you know, let's go moving along life thing, I was like, okay, this cancer thing. It'll be nothing. You know, I won't, you know, maybe I'll just have to do some radiation. I won't lose my hair. It won't be this or that.

[00:10:23] And then you find out because that's what I had seen with my aunt and with my mother-in-law that they all had radiation, didn't lose their hair, any of that. I was like, okay, so this will be it. This is the new cancer. This is, you know, here, look at me go. And it was very shocking to hear that. No, no, no. The first thing that we're doing is, is chemo. And it was, I had six rounds of chemo and then had the surgery and then had radiation.

[00:10:51] And then I had to do this full year of every three weeks I had to go in to get like a bag of, you know, something that was, I call it chemo light. So there weren't, I wasn't having all the symptoms that I was having before when I was having full-blown chemo. But, you know, the treatment was going on. And I still had to go in and, you know, be seen for various things because of the medication and all of that. So it was like a year and a half process. So silly me.

[00:11:20] I thought it was going to be boom, boom, boom. And I would love to hear from you, Holly. Is that essentially, because I feel like I'm not alone in that of, okay, here we go. You know, I'll get this over with and then I'll be done. And then is this what you find in your coaching that most people are like, okay, yeah, no problem. I'll be fine. That's a great question. And it really varies for people completely.

[00:11:44] You know, two people can have the same treatment and have totally different reactions and responses to them. I was the type of person who literally looked for and fell through every crack that I could. I mean, it was like just this short of death is where I was. I was so sick. There were many, many an afternoon spent on the floor of my bathroom.

[00:12:09] And my very best friend, actually from nursing school, ironically, had breast cancer a year and a half before I did. And she worked the whole time. You know, she didn't feel great, but it was like she, you know, she managed. So people respond very differently. And I think that there's, it's very helpful for people to let them know that people respond differently.

[00:12:37] That every individual person is going to respond in his or her own way. You know, I really also want to highlight the fact that men get breast cancer too. Yes, you're right. It's much more rare, obviously. Yeah, yeah. It's much more rare, but I know five men who have had breast cancer. Wow. So, yeah, yeah. So anyway, people respond differently. And that's kind of the thing. It's not a one size fits all.

[00:13:06] I want to jump on that too, actually. Because I, similarly, I had every side effect in the book. They gave me a list of like 20 side effects and said, you know, you might get some, some you might not. I got every single one. I got hospitalized twice during chemo. Um, I, I had a lot of setbacks. I had chemo added because I'd show up and they'd say, your heart's not strong enough. Your liver doesn't look good.

[00:13:33] Um, I, I had an allergic reaction to my first round of chemo, um, that completely blew up my entire face. And then that was another delay. And just so many different things. And by the end, I was on so many medications to treat the side effects from the main medications. Um, and, but I, I also have had people, uh, since, since being diagnosed and going through treatment, uh, my maternal cousin, who I'm very close with, who really got me through everything, got diagnosed as well.

[00:14:02] Um, um, at 42 and she just finished treatment in December. And she has said, she feels so guilty because she's had what she describes as a relatively easy time. She's tolerated everything pretty well. Hasn't really had any side effects. And it's mentally, it's affected her the most, but physically not, not as badly as she thought after watching me. Um, which I'm thrilled for her. I am.

[00:14:27] But, uh, I, I definitely have, I've, I've met people who've said, oh, well, you know, I was able to keep working. I could, I wasn't working and I barely survived. Yeah. So, so it is, it can be so different and, and, you know, the treatment you're getting can vary so, so drastically based on how you're tolerating it. Something that I kind of discovered was the, the, uh, approach that my doctors took to everything was you're young and you'll bounce back.

[00:14:55] So we're going to hit you with the maximum of everything possible so that we can give the longest time before we even have to worry about a possible recurrence. Wow. Yeah. That's what I was told too, that, because I was on, I think I was 48 and they're like, oh, so you're quote unquote young. I'm like, oh, I am. Um, but I was told that it's good to work, that you should continue to, to work. And I am hearing your stories.

[00:15:24] I'm grateful that I was even able to work at all. Um, and I think that's the whole other level of treatment that until you go through it, that, that you don't, you're not aware of, of everyone has a different experience. And, you know, um, and then on top of that, how you respond to everything, how your body responds, um, is very, very different.

[00:15:50] And I know that, um, I'm taking this med that they want, you know, tamoxifen that they want you to take for five years. And now they're talking about 10 years. And it's one of those things where it's like, oh yeah, that's fine. I'll, I'll take a pill. And I don't have any side effects. So it's fine. But I do know other women that have stopped it because they have a lot of side effects. And so then there's that feeling of guilt that you, okay. So then there's the feeling of, am I not doing everything I should be doing?

[00:16:16] Am I, you know, cause I, I don't know about the two of you, but I think there is always this, it's, it's this strange thing. Once you've been through it, you're, you're kind of on, you, you kind of have two different parts of yourself. This maybe it's just me, but the one part of, I, um, how do I say this? Like that I've gotten through this so I can get through anything and don't even worry about me. I got it. And then there's this other part of being deathly afraid of I've been through this. This is really awful.

[00:16:46] And I don't want to go through it again. So please, God, please, God, not this, not this, not this. And it's a very strange, it does that make sense? Yeah, absolutely. I, I, I kind of think of it as there's a part of me that feels like, wow, I've been through this. I, I, I've been, I've been through this. I can take out anything. And then also feeling like I can't take any more. I can't handle anything else. Not just in that realm, but like something since cancer, I've realized is I can't stand to be uncomfortable.

[00:17:14] I can't stand to be too hot, too cold. Like if my bed's not comfortable, I am so sensitive. I refuse to be uncomfortable for even a moment. Um, and, and part of that might be mental, but no, I, I fully agree. You know, and that brings up a, a point that, you know, what I kept witnessing as a healthcare professional who became a patient was that the, the clinical system, it, it can treat

[00:17:41] the disease, but it often doesn't treat the whole person. The grief, the identity loss, the fear that goes on long after treatment, you know, as a, as a patient, as a nurse who became a patient, I knew the system, I knew the language. And yet I still felt, felt profoundly alone and isolated. And that was such a shocker to me.

[00:18:10] I mean, it was such a surprise. And, um, and so the need for treating the whole person is so important. And Deb thinking about your maternal aunt, you know, she sailed through the, the physical, um, aspects of it, but the emotional, the psychosocial, that's, that's part of the collateral damage that comes with treatment.

[00:18:35] I'm so grateful that I had the opportunity to have incredible treatment and care. And yet, you know, our culture has created this, this system in which, um, you know, you're diagnosed, you get treated, you ring the bell, and then they send you on your merry way, you know? And so many people, uh, myself included and people with whom I've worked and coached have

[00:19:03] been like, now what, now what? They, they miss the, they miss the appointments. They miss going to see the doctor. They don't want to go, but they miss that. Um, and it's really incredible. Yeah. During treatment, you're getting so many calls and texts and people are worried they're checking in and then it stops and everyone's like, wow, it's over. And people stop checking in, even though now is when I'm less okay than before. Sure.

[00:19:30] Yeah, no, let's, so yeah, I really want to explore this because it's parallels a lot of what we see, right? When someone loses a spouse or, you know, a partner or, you know, the, the apparent that if you, there's the initial grief and then there's the outpouring of, of love, and then you're kind of left with, well, okay, what now? And, um, I had a lot of different feelings. My first one was, well, the universe owes me. I had this weird thing.

[00:19:59] It was very strange. I'm not, I'm not proud of it, but it's very weird feeling of, okay, I went through cancer. I was so good. I was positive. Even the nurses told me how positive I was. I was a good patient. I did everything that I was supposed to do. I came out of this, I, you know, blah, blah, blah. And, and so the universe should be, you know, riches and, and whatever it is that I was wanting or expecting. And so there's that initial piece of, oh, okay, it's over.

[00:20:28] And now I'm just sort of left here and I kind of sort of look like myself, but not really. And now I've got to kind of get back to my life. And. And. Oh, there are no, there, there, just FYI, there were no riches. There were nothing major happened. The lesson was for me, I had to learn like, no one owes you anything. Like, what do you do? You know, the universe doesn't owe you. You have to figure this out for yourself. And it was, it was helpful for me, but. I don't know.

[00:20:56] I don't know how the first year was for either of you. Well, it tests, you know, the, the assumption that you, um, that you just said, I have to figure things out myself. That's, that's the feeling that so many people have when they finish treatment, you know, and there's also an assumption that everything should go back to normal. There's no going back. You know, we're not going back. There's only going forward. Um, and the body's different.

[00:21:26] The person's different. Relationships are different. And it's a way of, um, learning how to navigate things differently, learning how to navigate circumstances differently. And, um, that's one of the things I love about the app cancer buddy, uh, that Dev and I are both, um, affiliated with.

[00:21:47] It's, it's, it's a way for people to connect, um, in, in the most personal of way where the three of us can have a conversation and we can do a wink and a nod like, yeah, I got it. Yeah, me too. Um, and, and so many people who feel like they're left, they're cast out. They don't necessarily have that.

[00:22:12] Um, and so this, this cancer buddy app is fantastic for making connections, for having that, um, that me too, me too moment that is bonding, that strengthening, that's affirming, that, that really, um, lessens that feeling of isolation. And Dev, do you mind? I were, were you in a relationship at the time?

[00:22:41] Were you living alone? Yeah, I was in a long-term relationship. Um, and we actually signed a lease to move in together, uh, the day before I got diagnosed and we had been like talking a lot about the future and what that holds, um, sort of, you know, sort of tentatively or sort of, um, you know, Oh, like, like with assumptions and

[00:23:10] that, I mean, that, that was such a strange thing to go through. Cause I, I was, I was sort of at a turning point in that relationship and I got diagnosed and it all was coming out of like still in the, in the, the aftermath of COVID and all of that together. I've spent the last several years untangling and figuring out what feelings are left from

[00:23:34] which piece of that, but I w I was in a long-term relationship and I, I, I remember, I remember during, during treatment, um, my, my partner who's now my, my ex, um, that's, that's the, the outcome of this story.

[00:23:56] Um, I, I gave so much credit to him for staying because I gave him an option to leave. And I, I, I kind of gave him that out because I felt like that this isn't something I want to deal with. This isn't something you should have to deal with. And I gave him a lot of credit for staying, which I still do. But in the aftermath of everything, I, I did have some friends say like, like you're giving

[00:24:24] him too much credit for staying like most decent people would. And I know there are a lot of conversations about people like getting left in those situations, but they were saying like, that's like a pretty low bar. Um, that's not the end all be all. Um, and during treatment, he had a really hard time with me going through that, which is something that I think is fair. You know, you have a loved one and a partner going through something traumatic like that. It's going to affect you as well.

[00:24:54] I don't think I should have been bearing as much of the weight of how hard of a time he was having, uh, while I was going through everything. And, uh, we ended up, I ended things, um, I ended things about three weeks after I finished treatment, after I finished radiation. Um, and cause I, I was kind of, I finished everything and I did have that moment of what now, uh, the adrenaline of survive, survive, get through treatment, wore off.

[00:25:24] And this day came that, you know, at the beginning I couldn't see, I couldn't imagine getting through to the end of it. And it was sort of, well, what now? And the first thing that I sort of, the first thing that I said to myself, um, is that I didn't just fight for my life to be in a relationship that I'm not meant to be in.

[00:25:47] So I ended things and had a really, had a really like traumatic, uh, traumatic moment of, um, of going to move out. And I was going to move back in with my parents since while I figured things out, uh, and they ended up getting, they both got COVID, uh, but I had already packed all my stuff. So my friend came and picked me up and I moved in and I stayed on her couch, uh, and she was a newlywed and they were living in a one bedroom apartment.

[00:26:16] And I stayed on her couch surrounded by everything I owned for a week until my parents were out of quarantine. And it felt simultaneously like a comedically low point, but also like the start of everything's the start, a turning point, the start of the after for everything. Yeah. And I think that the, um, what we're really touching upon is I think that part of, I hate

[00:26:45] saying journey, I hate like cancer journey, but of what anyone's experience is like is that while you're going through it, it's just about survival. It's like any, you know, you're just like, what's the next appointment? What's the next thing? Okay. I finished the chemo. Now what do I do now? What do I do? And there is that piece of, yeah, once it's all over, you've survived, you're on the other side, but, but now what? Because your life, you are not the same. You are not the same person that you were before. And this has changed you.

[00:27:13] And so every, it does force you to kind of look at everything in your life and ask, well, is this what I want? Is this worthwhile? And so everything's in shambles. Yeah. Yeah. And in some ways, and that's things, sometimes it's your life. Like I'm literally living amongst my things. And even though I don't know about you, Holly, but like for me, I was still in the same place, still married, still, still everything was the same, but I was different. Like I, you know, my surroundings, I don't, what was your experience like, Holly? Yeah.

[00:27:44] Yeah. That very, very similar. You know, cancer doesn't happen to just one person. It doesn't happen in isolation. It happens to family, partners, friends, and community in different and varying levels of, of engagement. And, and it really, for me, it moved through our relationship kind of like a current and the temperature changed from day to day.

[00:28:13] And what I saw personally, and I also see professionally is that roles really begin to shift when there's a diagnosis and a partner typically, or my husband in my case, became a caregiver and took on, you know, we were, uh, uh, are again, a very, a house in which we divide responsibilities evenly. So he took on the responsibilities.

[00:28:41] He became, um, a caregiver and, um, and that changed something in our relationship too. And the dynamic that held the intimacy, you know, the equality, the ease, the sense of being seen as a whole person, a sexual person that began to erode. Um, and, and then I remember after treatment ended and my husband walked into my, my office and he had this stack of files and I was like, what is this?

[00:29:11] And he was like, here, I'm done. You know? And I was like, what? You know, I'm like, I'm still bald. How could you? And he's like, I'm done, you know? And, and so, you know, it's taken a long time to, to find our way back to each other. Cause these experiences carry a lot of emotional weight, not just for me, but for my husband as well. You know?

[00:29:36] I mean, it's, it's gone to the, the core of how I see myself and how I let other people see me as well. I'm at the point now where I'm, um, uh, needing to get my implants changed and I'm like, what? What? You know? And I'm like, okay, we're back. You know, we're back. And I had a, um, I've got this, um, uh, shoulder issue and I had pain going down my, um, arm last week.

[00:30:05] And I was like, oh my gosh, is it back? You know, that fear of recurrence in, and I'm 16 years out and now I know how to deal with it when it comes. And yet it's real, you know, and these are, these are the issues that need to be talked about, that deserve to be talked about in a supportive manner. These conversations matter and they're really, really important.

[00:30:32] Um, because naming them, naming them doesn't make them smaller necessarily, but it makes them more bearable. You know, when a person is seen and heard and believed, then it's like a light is being, a light illuminates the darkness. Mm-hmm. And so tell me a little bit more about Cancer Buddy, because is this something that is recommended?

[00:31:00] My assumption is you can sign up anytime, any point from diagnosis to, I'm assuming you can use it as long as you would like to use it. Yeah, you can, you can even use it as a caregiver. Um, there are, there are different groups on there, but you essentially identify whether you're, you know, just diagnosed, whether you're currently going through treatment, whether it's post. And what's nice about it is it doesn't just lump cancer into sort of one, one heading.

[00:31:28] You can, you can search other people by type of cancer, by age, by location, and even by other interests outside of cancer. Uh, because one of, one of the things, um, I've, I've had really great conversations with Christina, the person who invented the app. And she's, she's a, uh, she's a former social worker who worked with cancer patients.

[00:31:50] And that's what really encouraged, uh, or really inspired her to create it is the fact that you need, you need people to talk to that understand what you're going through in a very, in a very. Nation specific way. Um, I talked to her about how I went to, I went to support groups and, uh, I, I, I, I love telling this story, but I, I went to a support group for, uh, young, young adults with breast cancer at my cancer center.

[00:32:19] And the first three meetings, I was the only one there, uh, which didn't make me feel better. And then finally the fourth week, this girl shows up and I couldn't stand her. She was so unpleasant and just so I didn't like her as a person. And that's not someone I want to talk to either.

[00:32:39] So the idea of connecting with people and actually finding a person that you would be friends with regardless, uh, and being able to talk to them about it is, is a game changer. I, I mean, I mentioned my mom is a three times survivor. I can't talk to my mom very much about cancer because for her, she was my caregiver and took me to chemo and treatment.

[00:33:04] And it's very hard for her to, to look at that as like her looking at her daughter. And for me, I was young when she first had it. And then the most recent time she had it, I was in my early twenties and I went home once a week to take her to chemo. Uh, so, so we just can't really talk to each other about those, those intricate pieces. Cause it's, it's hard. It's hard emotionally. And we were in such different places.

[00:33:32] She, the first time she was diagnosed was married with two kids. I, the first time I was diagnosed wasn't and, and have had a very different journey trying to pick up the pieces of my life afterwards.

[00:33:43] Uh, so, so finding people my age that understand that that experience adds a whole other unique and awful layer to it is, it's really important for me to have, have people that I can talk to about it, especially cause I don't know about, I don't know about you guys and I don't know about timing, but not a day goes by that.

[00:34:06] I don't think about it, not a single day that somehow it's not relevant to something that's happening to me, whether it's just pop. Sometimes it just pops into my head. I can't believe that happened. Other times it's, I'm out of my medication. I have another doctor's appointment. Oh, I have leg pain and that's residual from treatment. All, all these things. I think about it so constantly.

[00:34:28] And if I actually brought it up to, to people in my life, my, my close friends and family, as often as it felt like it was affecting me, it would just suck the energy out of every room I was in. Mm-hmm.

[00:34:43] Yeah, I think that that is, and this is why I think this app is so important because I go through this a lot with clients who are struggling with grief where, you know, it's really hard because again, like I said earlier, the, the, you know, the cards are gone. The, the services happened. You're now at the other side and you're kind of left alone with your own, um, your own thoughts and, and feelings.

[00:35:12] And each of us, you know, what's so hard about it is, is that sometimes the recovery is truly, or the process is really just you repeating the same things over and over again. Like this sucks. I'm not happy at this and that. And I always say when I work with clients who struggle with grief, it's like, I don't really talk much. I'm not really talking. There's no, what can I, there is nothing I can say. There is nothing I can say that's going to change any of it. And even if I tried to say anything, it would probably be the wrong thing.

[00:35:40] And I do want to get into people who say stupid stuff. Um, but, uh, you know, but I think that's what's so important about all of this is, is that yes, you have to have a place where you can go, where you can have the same conversation or say the same four things over and over again. And people will hear it like it's, you just said it.

[00:36:00] Because you're absolutely right that there is, um, uh, it's this weird place where you don't want to be a burden on people, but you also need a place to put your feelings. Absolutely. It's so important. And, you know, when you're, when you're in it, whether it's at the time of diagnosis during treatment or into survivorship, you don't just need information.

[00:36:25] Information is just pretty readily accessible, um, through, you know, your, your healthcare team, not Dr. Google. Um, what, well, what we all really need is someone who gets it, someone who's been in the waiting room, somebody who knows how cold it is when you, you know, get the, get the x-ray or you put the gown on or the, you know, repeated needle stick. Somebody who knows and has been there.

[00:36:51] And it's that it's, that's what Cancer Buddy really provides people. And in addition to being able to make very, very specific, um, connections with people, I always say it's not just support, it's find your people. You have individual, um, conversations and there are also groups that you can, that you can drop into and participate in, including survivorship group, a grief group.

[00:37:20] And that's really, really helpful. And I think that what, uh, what the, the brilliance of this app is, does is it meets people where they are, um, during the, I agree with you, Tessa's like, I don't like the word journey in the experience, in the experience of it. And, um, you know, survivorship, there's no, there's no end to it. You know, I'm 16 years out. There's no end to it. Um, it's an evolving, it's an evolving process.

[00:37:50] And so to be able to talk to somebody who has to go get their implants changed out, like that's really helpful for me. And, um, and, and so the, the beauty of this app, I wish, I wish it had been available when I had it because when I was up in the middle of the night, you know, with roid rage from all the steroids and like, you know, anticipate, anticipating treatment the next day, like to be able to have a place to go. That is safe. It's, it's, it's monitored.

[00:38:20] It's well-informed. I mean, that would have been such, such an incredible, truly a gift. Um, and that's, that's, I think the, the opportunity that it provides to people now, um, is that place to connect into with specificity. I mean, down to like hobbies. Um, yeah, it's fantastic. Yeah.

[00:38:43] So I do want to touch upon Holly, what you, you talk about in your book, this idea of, and it's a, you know, it's a, I don't know if it's a spiritual concept. It's something that obviously, you know, it's this idea of things aren't happening to you. They're happening for you. And it sounds like that's sort of the philosophy that you're, that, that you prescribe to, um, the book. So tell me a little bit more about how you arrived at that and how the book came about. Well, just kind of like you, I was like, okay, one and done. I'm good.

[00:39:13] You know, and I mean, it's just like the universe kept going. I mean, it was just like, I had a few years later, like a one, two punch of, um, natural disasters out of our house for 14 months. I mean, it's just like, felt like one thing after another, after another. And I was like, okay, I'm a big fan of, um, Victor Frankel, um, who wrote a man's search for meaning. And it's like, okay. And, and stoicism as well, where it's like, okay, stuff's going to keep happening.

[00:39:41] Um, Bruce Feiler writes about life quakes. Life quakes are, are, um, circumstances that happen about every 18 months or so typically in a, in a longitudinal study. That's what he found. And so things are going to keep coming. So I have a choice about how I respond to it. You know, I can, it can be from a place of fear or it can be from a place of, okay, how is this here to help me? What am I supposed to learn from this?

[00:40:10] What am I supposed to do with this? And, and having that pivot, I never, ever asked, why did I get cancer? I was like, you know, why not? Because I did. And I think I spent the majority of my career in, um, both adult hospice and pediatric hospice. So I took care of dying children. And so I saw things that most people, thankfully will never see in their lives. And so the, the most tragic.

[00:40:38] And so I recognize that this is part of the life experience. And so being able to look at it, look at an experience and say, okay, well, how is this here to help me? How am I here to grow? What am I supposed to learn from this? It was a much more, um, helpful way to go through everything that I've gone through. And it just felt better. And I was like, okay, well, do I want peace or do I want suffering?

[00:41:08] I kind of want peace. And so when I approach something from a place of learning and growth, that feels more peaceful to me. As opposed, as opposed to ruminating and worrying and, you know, stressing about the future, what might happen or what did happen. It's like, okay, well, it did. So what do, what, what am I going to do with that? You know, and I, my book is called The Silver Lining, A Supportive and Insightful Guide to Breast Cancer.

[00:41:35] And in it, I talk about finding silver linings. And I am so clear that this is not about toxic positivity. Like, oh, if you're just positive or manifested or whatever. No, it's not that at all. It's literally being able to find even the tiniest, itty bitty little glimmer of hope to get through an awful day.

[00:42:01] So like there were times it was a, it was a butterfly outside my window and I'm like, oh, that's nice. I really needed that, you know, as I'd couch glue and I couldn't get up. Yeah. Yeah. Well, the Viktor Frankl's book, Man's Search for Meaning, which I highly recommend. I've talked about it on the podcast before. And I recommend it to clients all the time. I often wonder about that. Like why some people are able to, okay, this is awful. This is not fair. This is, this isn't okay.

[00:42:29] But I've got to get through it versus the people that really dig in. Mm-hmm. And like, it's a choice. It's a choice. It's literally a choice. And it's as simple as that. And some people choose not to. And that's, that's their choice.

[00:42:51] In, in the coaching work that I do, what I find is that some people are so stuck that they don't, they want to choose that path, but they don't necessarily know how. And so by giving people tools, very, very simple tools to implement, that's what helps unstick just a little bit. Mm-hmm. So can, would you be willing to share a couple of those tools?

[00:43:20] What would be, what's a tool that you commonly teach? Oh, absolutely. So one of my favorites, so the, the concept of future tripping is, is a big one, especially for people who are in treatment or in recovery. And the future tripping is taking you out of the present moment. And that's a challenge. And so there's, um, one of the tools that I just love is five, four, three, two, one.

[00:43:47] So what that looks like, and I did it the other day when I had the arm pain, I was like, no, no, five, four, three, two, one. So literally you name five things that you can see. Name four things that you can feel, not emotionally, but physically feel like my feet on the ground or the softness of my jacket. Name three things that you can hear.

[00:44:14] Name two things that you can smell. And one thing that you can taste. And sometimes it's stale coffee in your mouth. And every time I do that with a client, they're, you know, they're kind of like working hard to do it. And then at the end, at the end, I'm like, did, were you thinking about potential recurrence in that moment? No, no. I was thinking about the five things I see, you know, and it's like, okay.

[00:44:43] And that brings people back into this present moment. And that's a big deal. There's another tool that I really like, and that is to literally close the right nostril and breathe only out of the left nostril. And that slows your system down. It turns on the parasympathetic rest and digest nervous system, and it slows everything down.

[00:45:11] That's really, really helpful, especially for people who wake up in the middle of the night in a panic and a worry. And a third tool that I would also, that I always recommend to my clients is tapping into creativity. Because creativity and anxiety, they're opposite, inverse. So when creativity goes up, anxiety goes down.

[00:45:37] And it's not about like getting out a, you know, painting project or anything like that. It's literally like scribbling on a piece of paper or doing some coloring, anything with your hands, going into the kitchen, getting, getting Play-Doh out. If you have, if you have that and playing with something. And Picasso, one of my favorite Picasso lines is, it took 91 years for me to learn how to paint like a child. Right? Just tap into that.

[00:46:07] So those are three tools off the top of my head that really resonate with clients. Yeah. And it's so interesting because I worked in drug and alcohol recovery. And, you know, PTSD is a high part of that. And I'm sure you know Marsha Lenahan, which is all about grounding. And, you know, this idea of just not so much. You don't need to recall every moment. You don't need to go back in time and talk about, okay, the moment you heard that you have cancer. And then this and this and this.

[00:46:34] That it's really about tapping into the feelings. And the feelings itself, slowing the system down, regulating yourself, getting yourself out of your own way a bit. Out of your mind. Yeah. Yeah. So before we wrap up, I would love to hear from both of you. What, you know, if you could make a, you know, one thing that you wish people knew about cancer, about your personal experience.

[00:47:05] Dev, let me start with you. Yeah. Yeah. Yeah. And thank you for sharing all that, Holly. Because, because I, I, I, you know, I still like I have good days and bad days where I struggle with, with some of those feelings and those anxieties.

[00:47:21] I mean, something, something that I, something that I, I like to share with people that don't have any experience with it is, is, it almost sounds silly, but it's worse than, it's worse than they say. It's worse than they think. You know, people hear chemo and have this sort of image of it and this, this idea and it inspires fear, but it's worse than that. It, you know, it's like, it really is that, that bad.

[00:47:50] Um, cause a lot of, I get a lot of comments about how, oh wow, like you seem like you're doing great and it seems like everything's better. And, you know, both mentally and physically it's, it's not that simple. And a lot of the people that are close to me even say like, oh, I can't believe you still have this many doctor's appointments. I didn't realize that you were still on so many medications. Um, and so no matter how anyone is tolerating it, handling it or appearing to handle it, it, it, it is that bad.

[00:48:19] Um, that's, that's something that, that I, I think is, I, I, I think that even with all of the awareness of cancer and how awful it is, I still think that sometimes that might get missed a little bit. Uh, and then for people who are going through it, I, I really try to try to tell people it's a bad situation and you're allowed to feel bad about it.

[00:48:46] Um, I, I actually broke up with my therapist during treatment, uh, which I'm sure was a scary thing for all the people around me. Uh, but I was talking to her and I just realized it wasn't making me feel better because there's nothing that we could talk about that was going to change the situation.

[00:49:05] And I, and it just, I, it was a bad situation that I was allowed to feel bad about and that I did feel bad about and really letting myself feel that way. Um, I had a lot of really big meltdowns and a lot of really like kind of catatonic moments during that, that I think in, in hindsight, I think I were subdued compared to how I felt.

[00:49:31] So, so I think just letting yourself feel it, not trying to put on a brave face, don't be a hero. It sucks. It sucks. And every single feeling is valid and it's, you're allowed to be miserable and be upset and be a downer about it. Mm-hmm. Absolutely. How about for you, Holly? Yeah, well said, Deb. Um, there are a couple, a couple of things.

[00:49:55] I think, um, for, for people who are going through it, there's one thing that I think is so important. Um, and that is to stop shooting on yourself, remove the word should from your vocabulary. I think it would be very helpful if we all removed should from our vocabulary.

[00:50:15] Um, because adding that layer of, um, guilt to whatever it is, is, you know, if there's somebody in your life, including a blood relative, who's not fueling you, there's, you don't need to be engaged with them. You know, there's no shoulding. Remove should. Okay, that's one. Um, another thing is to let people know that, as I mentioned earlier, that, that survivorship isn't a destination. It is an ongoing process.

[00:50:45] And there is a tremendous amount of collateral damage that comes with treatment. And the relational and the emotional dimensions of this process are just as real. They're just as demanding and just as worthy of attention as the physical ones. Mm-hmm. And they're overlooked so much.

[00:51:07] We put so much energy into treating the body and so little into tending the relationships and the, the self that carry the person through that we need to pay attention to this. You know, I've, I've watched so many people and I actually was one of these people, finish treatment, ring the bell, be declared cancer free. And then often quietly fall apart, feeling guilty that they should feel better, that they should be better.

[00:51:36] Um, and that's one of the reasons I believe so much in, in this Cancer Buddy app and what it's building, because it's a space where no one has to navigate this process from beginning through recovery alone. Um, it takes away the aloneness, um, from treatment, um, you know, with caregivers, um, and in the long and complicated years that, that follow active treatment.

[00:52:07] Yeah. Yeah. I have friends that I text at 2am and just say like, I still can't believe this happened that have been through it as well. And I know when I get a text like that, there's never a time that I'm not at the ready to talk about it because I'm probably thinking the same thing. You know, there's never a time where it's like, Oh, I really don't want to get into that right now.

[00:52:27] It's, it's, it's very omnipresent for me and granted I'm, I'm still, I'm only four years out of treatment and, and still in a lot of, in a lot of it and still in a lot of medical debt. So, uh, so with all that, it, it is something that's that I, I, I'm, I'm so ready to talk to anyone that needs to talk about it. I'm so ready to talk about it.

[00:52:50] If I need to talk about it and having people that I can do that with that really, that really understand and people that are my age, people who have had cancer in the last few years, people who are at the same point in treatment as I am and have the same fears and have the same concerns about what dating looks like. Like what the future looks like in terms of if I want to have children and what that looks like for their health, having that to talk about it, it makes me feel sane. And it takes away.

[00:53:21] I think that I, I, there was a point where I felt like if cancer doesn't kill me, the isolation will. So, so not so, so putting myself in situations where I can talk to people like this, like going on the app and answering other people's questions and feeling like I might be able to at least do a little bit of good. There, it really has, it really has helped me just come to, come to some semblance of peace with everything. Yeah.

[00:53:49] I think that's a great way to wrap things up. Thank you so much to both of you for being here and having this conversation with me. Um, so, uh, Holly, please share. All of this will be in the show notes, but please share. How do people find Cancer Buddy, your book, all that good stuff? Well, just Google Cancer Buddy and you'll, you'll get right there. Um, easy.

[00:54:13] It's on the, uh, it's on, it's in the app store and it's available for, uh, Apple and Android. And, um, I'm just at Holly Jacobs. Um, and that's where you can find me. I'm spelled, my name is spelled H-O-L-L-Y-E. That's the only little caveat there. Yes. Yeah. Yeah. And Deb, anything that you want to share? I know you're, it sounds like you're a big proponent of Cancer Buddy. Yeah. Yeah. I'm a big proponent of, I'm a big proponent of that.

[00:54:39] I'm a big proponent of, of just like finding meetups, finding people and, and, and getting coffee with someone that wants to talk about it and putting myself out there as well. So I always say to people, if you're going through that, if you have a friend who's going through that message me, I'm on a lot of different social media. I'm on Instagram. I'm on TikTok. Like I'm happy to grab coffee with your cousin's friend's neighbor if they just got diagnosed. Um, yeah. And I'll, I'll, I'll share some of that for the show notes as well.

[00:55:09] But yeah, I just think talking about it, talking about it, saying it out loud and not letting it become this dark blooming thing. That's, that's my big thing. Yeah. And not letting anybody else's stuff come on you because this is something we haven't gotten into, but you know, people have their own feelings about cancer. So they hear cancer and then you, you start getting their stuff, their, their stuff coming at you. And I think Deb, you brought up a very good point about you breaking up with your therapist. That kind of makes me laugh because as a therapist myself, I think that the

[00:55:39] that's one thing in the therapy world that has really, it used to be, it was always about processing, processing, processing. And then the world really changed and people started, I'm a coach myself. People started coaching. People started, the world changed. And it was like the expectation of therapist was you need to solve problems. You need to solve problems. You need to solve problems. And I wonder if your therapist got stuck in that place of she needed to get, you know what I mean? That feeling of getting back to, and I, I experienced it too.

[00:56:09] Sometimes I'm like, Oh God, just let them process, let them process, you know? And, and I've worked a lot with grief. So I, I understood that, but I think that that's one thing in the world that we live in today, especially is there such this, you talked about Holly, you talked about positive, toxic positivity, but there's also that other part of problems should be solved, you know, chat GPT it and here you go, you know? And it's like, sometimes there's no, there is no answer. There's nothing anyone can say.

[00:56:37] And I do want to say, I've gone back to therapy. I advocate for therapy, but during, but during treatment, I, I, it just wasn't reaching me because it was, it was a problem that no therapist could solve or, or, and, and, and the processing I had to do couldn't begin until I was through that. Yeah. Which, and thinking about your, your tagline test, you know, it's, it's, it's a matter of

[00:57:02] having someone who will sit in the mess with you and, and not try to fix. Not try to fix. Um, and, and that's everything. You know, that's everything. I'll, I often say to my, um, to my clients, do you want ears or mouth today? And often it's ears, ears only. I like that. I might steal that. Thank you. Yes. We could have talked for another hour. So I have so many other questions and all of that good stuff.

[00:57:31] So, but thank you so much for being here and thank you everyone for listening to the gen mess with Tess. Thanks so much for listening to the gen mess with Tess. Remember, we're not just fixing the mess. We're learning how to live in it. Stay curious, be kind to yourself. And I'll see you all next time. You've been listening to the gen mess with Tess with your host, Tess Brigham. Make sure to subscribe wherever you get your podcasts and make sure to follow Tess Brigham

[00:57:59] on all social channels to learn more about Tess's books, courses, or to have Tess speak to help clean up the gen mess at your organization. Head on over to TessBrigham.com. Thanks for listening.