Ep 025 – Dealing with Cancer

Suburban Folk 0:00
We’re ready to announce the winner of our random drawing for a free set of false lashes from lash binder. You can find out more about lash binder at lash binder.com. And you can also learn about their program in which every purchase of a set of their false lashes, they will donate a pair to a chemotherapy patient which is a really, really cool program that I’m super excited to be a part of. Deborah Allen 01 at email was our randomly selected drawing winner. We thank everybody for entering their email into the Suburban Folk subscriber email where you will be notified of all new episodes and other upcoming information about the show. Again, visit lash binder.com. To find out more information and to order your own set to go along with this promotion. We have a very special episode today featuring a cancer survivor Dr. Renee exel. Burt health travel finance, parenting and home improvement. This is the Suburban Folk podcast 250 dollars a month into my child’s 529. From the month that they start kindergarten, I should be able to pay for 80% of my child’s how much

Unknown Speaker 1:08
I don’t trust that most people will eat their vegetables. So our kind of standard is three servings of vegetables per meal, you take something

Unknown Speaker 1:17
like a two by six and you cut it with a circular saw.

Unknown Speaker 1:20
That’s like a superpower. Those middle school years are not as fun but at that age, they’re still willing to talk to you. Welcome to the Suburban Folk

Suburban Folk 1:27
podcast. I’m your host, Greg. Today’s topic is cancer, whether you’re a patient currently being treated, or if you have a loved one that’s going through the disease. Our guest is Dr. Renee exel Bert, she’s both a licensed psychologist and certified personal trainer. She’s the founding director of the metamorphosis center for psychological and physical change, where she integrates psychotherapy and exercise with a focus on the mind body connection. she maintains a private practice in New York City Manhasset and Nyack, New York for the treatment of children, adolescents, adults and families. Dr. x Gilbert is also an adjunct professor in the Department of Applied Psychology at the New York University Steinhardt School of culture, Education and Human Development, where she teaches master’s level psychology courses. She previously served as staff psychologist at the Winthrop University Hospital Cancer Center for kids working with children and adolescents diagnosed with cancer. Her first book, chemo muscles, lessons learned from being a psycho oncologist and cancer patient will be released on February 25 2020. Dr. exel Burt, thanks so much for joining today. I’ve really been looking forward to our conversation. Unfortunately, I think the reality is that cancer is something that people deal with personally like yourself or know at least one person that has dealt with it. So I think that your story will really hit home for a lot of different folks. So I really appreciate you taking the time to join the show today.

Unknown Speaker 2:52
Absolutely.

Suburban Folk 2:53
Why don’t you get us started by giving your background leading up to your cancer diagnosis. And what your initial reactions were and how you initially started to deal with things.

Unknown Speaker 3:07
Sure. So I was a psychologist, and my first job out of graduate school was I was working in a pediatric cancer center. And I was working with children and adolescents who are diagnosed with cancer and their families. And my work pretty much comprised of walking them through the entire journey of cancer. And I had been doing that work for six years. And I absolutely loved it. I really considered it some of the most beautiful work I’ve ever done. But after six years, I had experienced a lot of loss and a lot of trauma. And I felt like it was time to leave the cancer world. And so I made the decision to leave that job. And I left in April and in July, I was diagnosed with my own breast cancer. So it was it was an extremely overwhelming time for me. But there were a Other aspects of that experience that compounded the trauma that I was going through. For a few months prior to being diagnosed, my husband and I had been talking about whether or not we wanted to have a third child and you know, we were contemplating going back and forth. And I had discussed it with my, my ob, and we finally decided we’re going to go for it. And I had originally gotten a prescription for a baseline mammogram, from my ob, even though people aren’t recommended to get their first mammogram until they’re 40 unless they have some significant family history of breast cancer. I had no family history of breast cancer, so I really didn’t need a mammogram until I was 40. But because I was, you know, thinking of getting pregnant, that would be nine months and then I would be breastfeeding. So my ob and I had discussed that I would get a baseline mammogram before I tried to get pregnant, so I got my baseline mammogram and probably a day later I got pregnant and I knew I was pregnant. I have always been blessed with easy fertility and I knew instantly that I was pregnant. And then about a week after my baseline mammogram, I got a call from my ob, saying that the radiologist saw something concerning on my, my slide on my mammogram, and I wasn’t really scared because my mother had a very long standing history of what we call fibrocystic breast. She was constantly having scares. She was constantly you know, under surveillance. And so I assumed that this was going to be my journey too and I wasn’t really concerned. And so they want to make it a rescreen and I was told, you know, to make an appointment, I made a rescreen like on the appointment for about a week and a half later. And then it was about two days later that my same gynecologist called me back. And this time he was much more concerned and said that he spoke to the radiologist again. And now they’re very concerned even though it was the same mammogram that they were looking at, and that they wanted me to call in immediately. And I was just discussing with my ob Not to worry, my mother had this history of fibrocystic breast, this isn’t, you know, this isn’t going to be anything. And on top of that, I’m pretty sure I’m pregnant. And he was much more concerned and he wanted me to go in immediately and have this mammogram. And so I did go in for my mammogram, and I started my experience with healthcare professionals and, you know, trying to decipher nonverbal disclosures on their faces when, you know, I kind of got the sense that something was wrong. And even though I was fairly certain that, you know, nothing was going on. The technician and the original radiologist told me that it looked like what I had was highly indicative of a tumor and that it needed to be removed and that most people could still do well with this. I remember that that language most people could still do well with this, which was really terrifying for me, because that just sounded very ominous to me.

Unknown Speaker 7:30
And so because there was the possibility that I was pregnant, which was then confirmed that I was indeed pregnant. I needed a needle biopsy to confirm my cancer, and I had to wait over a weekend for the results. And I was expecting a call from this radiologist to tell me whether or not I had cancer. But instead of the radiologist calling, it was my ob. And my ob said to me, what’s this? I hear you’re pregnant and you have cancer. And I said, No, no, no. I said, I’m waiting to hear the results. But I am pregnant. But you know, this is just a scare they they’re waiting to see. And he said, Oh no, I have your results and you do have cancer and literally as the world’s expel beneath me, and I couldn’t even process what he was saying. He then went on to talk about how he gave me a prescription for a mammogram months ago and why had I waited so long to get a mammogram. And like, I couldn’t even I couldn’t even process what was happening. I couldn’t even process that I had cancer. And at the same time, I was being berated by my doctor that I should have gotten the mammogram months earlier when there wasn’t even any medical necessity for doing so. So there was so many things going on. But that was how I was told that I had cancer,

Suburban Folk 8:54
that is a lot of life changes in what is a very, very short period of time. What is the total time span that we’re talking about from when you made the decision to get out of being a therapist for adolescent cancer patients to getting pregnant and then ultimately having your cancer diagnosis? It sounds like we’re talking about in the span of a year or less. Is that right?

Unknown Speaker 9:21
Oh, no, it was I left the pediatric cancer center in April and I was diagnosed at the end of July. Yeah, no, it was really quick. So there was a lot of intensity and there, you know, and there was also a lot of just personal loss at that point anyway, because I was leaving a job that I really loved. And, you know, it was just a different life transition. But yeah, the the experience of a diagnosis is extremely intense and extremely terrifying. But coupled with pregnancy, and what that would potentially mean as well. I was really scary because there are certain types of cancer. If you’re an estrogen positive cancer, the possibility of a pregnancy could mean that a baby could seat be feeding your tumor. A lot of things happen in the body when somebody’s pregnant, but because of hormones, a baby could actually be feeding a tumor. So the fact that I had a cancer that was growing inside me and that that a baby could potentially be making the tumor grow more was just really terrifying and at the same time, desperately wanting this baby and and having you know, those experiences all at the same time. Yeah, very overwhelming.

Suburban Folk 10:37
How do you compare the strategies that you employed when treating patients psychologically to that initial interaction that you had with the OB like you said, it sounded very Matter of fact, almost even parading have told you to do this thing. You didn’t do it in the timespan I thought you were gonna do it. Is there a Very sharp contrast, it sounds like there is in how a psychologist might go about the considerations for somebody starting to deal with a cancer diagnosis versus somebody that is straight in the medical field and kind of like you mentioned sounds like maybe even, depending on what you’re dealing with, I don’t know if I would want to call it a burnout or maybe you lose your sensitivity, if it’s something you’re dealing with every

Unknown Speaker 11:22
day. You know, I think that one of the things that makes a psychologist, really, really gifted at what they do is their ability to really work fully with their heart. And even though you have you maintain professional boundaries, when you’re working with children with cancer, those boundaries are really different. You know, you’re sitting in their, in their medical room and you’re playing video games with them, and then they have to stop because they, you know, they’re nauseous, and they might throw up and, you know, you’re sitting with them all day long. So the boundaries are really different. And so I think that when I worked with kids with cancer, I really Worked fully with my heart. But you know, when you are a men, when you’re a mental health professional, you can be incredibly loving and caring, but you’re never going to really fully understand the sheer terror of what it feels like to be somebody who’s diagnosed. So like as much as I could emphasize and identify and really connect with my patients and their families. You know, my even though my level of connection and understanding was quite significant, you can never know what it feels like until you’re going through it yourself. I used to have this experience with patients where, you know, when they first came to our clinic, my job was to knock on the door, and I would introduce myself and I would say I’m a psychologist, and I was very casual and you know, and I would meet the kids and hang out with them. But whenever I knocked on the door, parents in particular always were scared because they somehow thought that because I was a psychologist or Somebody’s working, you know, in the medical capacity in a cancer center that somehow I was privy to information that they didn’t have. And they were always afraid. And I remember working there thinking like how, you know, of course, the doctors would communicate everything that you need to know, how would I know something that you don’t know. But I can tell you for sure that when I was a patient, I had the exact same experience. I remember walking into hospitals and literally feeling like, you know, the office staff knew, you know, new things about me that I didn’t know. And I think it’s just a result of this experience of being incredibly disempowered and very fragile and helpless. And so I think that as much as I, once again could empathize as a mental health professional, I think that there are just certain things that you cannot understand until you, you know, are a patient.

Suburban Folk 13:54
I would imagine one of the notes that I had preparing for our discussion is around. Did you have the feeling of Why me? And that probably couples with the feeling of it can’t happen to me until I’m sure you’re faced with that realization? Did you fall into that initial Why me mindset and like you said, does that also give you more empathy or just put you more in the shoes of the people that you were treating?

Unknown Speaker 14:25
I definitely think that having cancer or going through any kind of life trauma has definitely made me grow as a therapist, I think that my ability to connect with people who have had any kind of loss or trauma has has dramatically deepened since I’ve experienced my own loss and trauma. But with regards to the Why me I think I spent so much time just feeling so traumatized that for a while it you know, in the beginning, I was like this definitely is not me, you know, when, when they were concerned that I may have, you know, something indicative of a tumor on my a mammogram like this definitely is not me, you’re wrong. And you know, I, you’re wrong. This is my mother has this history, you know, like, it definitely wasn’t me. But when it became me, it was like, just this crazy experience like, I’m 37 years old, you know, how, how can I possibly have cancer? And then I think the Why me became much more pronounced when I would go to these doctors and I would walk into these offices and everybody in the room was like, at least 70 years old. That’s when it was definitely like, how is this happening to me? And I also think that, you know, I’ve always seen myself as a healthy active person. I never felt sick, I didn’t look sick. But here I was having, you know, the medical world saying, Oh, no, you’re sick. So I felt very out of sync. I wonder if

Suburban Folk 15:52
I should preface this with actually my wife is a physician and going back to how people spend their day to day and even with the Why me part of it. I know for her and I, she tells me that I always think everything’s gonna be okay. I think in the health world or something happening to our kids. And then my day to day job is mostly in the tech world. And when we talk about things like viruses on the computer, or getting your email account hacked or things like that, I tend to think that she’s not cautious enough. So maybe that is just somewhat of a symptom of when you see what can happen day over day, then you’re more hyper aware of it and then for the rest of us that don’t live in a particular world. And that why me question might creep up more and more and especially to your point. A lot of people know somebody, whether it’s a family member or colleague or whoever that has been affected by cancer. But your mind I think initially goes to, like you said 70s 80s, hopefully older, that it’s not somebody in the middle of their prime. So I can imagine that would have emphasized just how tough of a situation you found yourself in. How did you then translate to your family? I guess, how did you initially communicate to them? How did they start to cope? And what was the interactions as you started to figure out your

Unknown Speaker 17:34
next steps? Sure. So um, you know, my my first call, as soon as I got my diagnosis was to my husband, who was, you know, who was equally traumatized and incredibly supportive. The next call was to my parents, and I think that one of the things that you become extremely aware of and certainly something that I’ve learned as now a patient but also in The research world as a professional is that you need to sort of experience your own feelings first. And it’s very difficult to share them with other people. Because when you’re not at the process of managing your own emotions, it’s very, very difficult to handle somebody else’s. And so that was something that I sort of learned along the way that people that I share things with had their own personal reactions. And I wasn’t strong enough to deal with other people’s reactions, I could barely cope with my own. So I think that that’s something that I learned, and also something that I’ve, you know, that I communicate about in my book, that, you know, when somebody is sharing their news with somebody, yeah, it you know, as a friend, family member, it’s hard to sort of put your own needs aside but, you know, a patient very often isn’t isn’t in control of their emotions, they can’t deal with other people’s and so for many people, they shut down and they choose not even to share their information with other people because they don’t want to have to manage the emotions of somebody else. But my children at the time were were only three years old and seven. And so I was so devastated going through all of my own experience and everything was so immediate, that, you know, I had this timeframe where I had to have surgery quickly, I had to decide whether or not I was going to terminate my pregnancy because of the risk to the fetus or possible risk to myself because of the fetus. I had so many things that I had to navigate so quickly, that, you know, sort of handling talking to children was a totally different thing. And what was interesting is that the majority of my job, working with kids with cancer was teaching parents how to speak to kids about cancer, how to talk to siblings about cancer, how to let the Child themselves know that they had cancer, you know, I had a lot of research and I had written papers about all this. And so here I was, you know, as the mommy now, and this was my children talking to my children about cancer. So it was a very, very different experience. Plus, they were very little. And one of the things that I talk about in my book is, you know, developmentally we give different information to children based on their age, their understanding their educational level, their cognitive functioning, all those things. So my children with very, very little, so when I was finally able to start talking to them about what was going on, it was language that was, you know, based on their developmental understanding. I think at the time I said mommy has boo boos in her boobies. You know, because that’s, you know, that’s they, you know, three years old, you know, seven years old, so, so there was just a lot going on. And that was, you know, that Was my my family experience my initial diagnosis.

Suburban Folk 21:04
And the best way I could relate to that is, before I had kids, any horrible story that you would read in the newspaper about kids that your kids age or younger, without having a personal experience to attach to it, you feel bad, but it has a whole new meaning when you actually have your own kids of that age. And you then take those stories and say, I can’t believe what I would do if I had to go through this. So to your point, luckily, you had all that training going in but still having to apply it to your own situation and to your own kids. I imagine those were unimaginably difficult conversations to have.

Unknown Speaker 21:51
Well, well, yes, they were but what’s interesting is, you know, I’m, I’m sure you know that I had a recurrence and so the first time that I had cancer conversation was really, you know, I had this very early stage cancer, and for all intents and purposes, all that was going to happen to me was that I was going to have this sort of life altering surgery. And then I was going to be on hormone therapy, and then you know, I should be okay. And so the conversation that I had with my children was, you know, was around that, you know, and they were so little, but the second time, you know, had a recurrence, seven years later, and the second time, my children were much older, and they could fully understand what was going on and my cancer was different, you know, I was going to be having radiation and chemotherapy and you know, when they were certainly old enough to have their, you know, lives affected and certainly old enough to be really concerned about me dying. And so my the language was very different. The interaction with my whole family was very different their their role as caregivers to their mother became different in us all All of these things have been part of my family, they’ve been part of my experience. And there have been so many parallels that I have encountered with my work with patients. You know, I’ve had so many patients over the years who have said to me, they’re upset that their children had to deal with them getting a divorce, or they’re upset that their children have to deal with alcoholism in their family or, you know, addiction or any anything. And, you know, I’ve always commented that, you know, we can’t take these things away that they are they just are part of, you know, our world. And that because of what your kids experience, it helps shape them right. You know, kids kids are gonna experience 1000 different things they’re gonna experience maybe job loss or divorce or illness or death or or whatever. But, you know, this was like, definitely something that you know, I saw firsthand. This major life event that was really shaping my children, you know, seeing having them see their mommy sick, you know, having them come home from school and me being in bed having just had chemotherapy and, you know, me being, you know, out of the lands of the living for several days and, you know, and and then probably really worrying, you know, and us talking about it as a family routinely, you know. So yeah, that was that was a big part of my life and their life.

Suburban Folk 24:30
Is there any cycles or timelines that go along with interacting with people going back to even coworkers or other colleagues and like you said, the way that they perceive you or deal with you and that being almost its own task, and then as compared to how your family handles everything.

Unknown Speaker 24:54
You know, I think that there’s so many variables that that impact that I think that you You know, it’s it’s based on so many different things. It’s based on how open the patient themselves is with what’s going on. Right? So how much they tell somebody, what they you know what their experiences, it’s based on the person who you’re interacting with, like, what are they? What’s their experience with cancer? What do they know about cancer? What do they want to know about cancer? It’s based on their own. Sometimes it’s based on their own ignorance. Right, they might ask questions that are incredibly inappropriate. They might tell you stories that are incredibly inappropriate. So I think that it I think, to answer your question, it’s a continuous battle. I don’t think it ever changes because I think that as an individual going through illness, your identity is constantly changing the way that I experienced my own identity. When I was first diagnosed with breast cancer versus today is so different. The way I see myself is so different, the way that I talk to people about my Cancer is so different when I was first diagnosed. I, you know, I didn’t tell anybody I told my closest friends, what was going on, and only a few people in my life what kind of surgery I had, that I eventually had the loss of a baby, I only shared that with a few people. As time progressed, I ended up sharing with all of my patients, you know that I had breast cancer, like I’m very, very open about it now. And here, you know, I literally pour my soul out on page in my book, and I literally have, you know, I have shared everything, the most intimate details of what I went through, but that’s only because in my own psychological development, I’m in a different place.

Unknown Speaker 26:48
So I think I answered your question, I’m not sure but

Unknown Speaker 26:52
I think that people have you know, this relationship with how you interact with other people is always changing based on both you and Ma’am,

Suburban Folk 27:00
you ever evolving is Yeah, the term that I was thinking when I’m hearing you describe those interactions. And that makes sense, because I think people change all the time and evolve. So those interactions would also evolve along with that. So moving into treatment itself, and like you’d mentioned, not only are you dealing with the cancer diagnosis, and what the treatments are going to be, you’re pregnant at the same time, which has an extra set of complications and decisions, I guess, to be made. Walk me through that process and ultimately, what the treatment ended up being

Unknown Speaker 27:43
sure. So, you know, once it was determined that I was in fact pregnant, and I did, in fact have cancer. The cancer was pervasive through my breast, which meant that I was I was going to necessitate a mastectomy. So at the time being a 37 year old And hearing that I just can’t even express the amount of identity changes that that immediately, you know, caused just in terms of femininities physical beauty, just everything. And so that was what that was the medical procedure that I was going to necessitate. Because I was so thin, they had two different medical treatments. One was flap where they take your extra fats from your belly and they can literally make a like a breast. And I was too thin for that. And so I needed implants. And so the original decision was that I was going to have a mastectomy with, you know, reconstruction with with an implant. I saw an amazing, wonderful, wonderful, wonderful plastic surgeon who has been such a significant part of my journey. And really a friend and somebody who has really taken care of me in such a wonderful way. And when I met him, he originally talked about how women who have a single mastectomy, he talks about the aesthetics of that how, when you have a single mastectomy, you can never really he said that he that your breasts would be more like sisters than twins. And that that was that was his terminology and that, you know, if I did have the single mastectomy, that he would want to do some sort of surgical procedure to my other breast to just sort of make them more aligned. And then when I spoke to my surgeon, there was some some research small but albeit research that suggested that there was a possibility that if you had cancer in one breast, it could linger behind the chest wall or somehow you know, get somehow you know permeate to the other Whereas there was some small research so, so this idea that possibly you might want to consider a double mastectomy started coming in and and then you know, and these were just thoughts and these were just everything coming so quickly at me. But what had happened was probably about two days before my surgery, I had to go for a scan to just check my breast again, but at the same time, they wanted to check my other breast. And because I had highly dense breasts, and because my mom had this history of this fibrocystic breast, which I guess I had as well, when they were doing the scan, they thought they saw something in my healthy breast and the attention to that and the focus to that. I was like beyond beyond terrifying like here I was, you know, dealing with cancer in one breast and about to have a mastectomy and now they’re focusing on this other breast and and the idea that that could potentially have been, you know, malignant or sick, was just too much, like literally too much for me. And my doctor had told me, you know, just so you know, you’re going to be under much greater surveillance from this point forward. Because you have breast cancer in one breast, your other breast is going to be, you know, always suspect. So you need to know that this scare that you had today, you’re going to have probably, you know, routinely and that was so much for me and so traumatizing that I started considering that I want to have a double mastectomy. And, you know, I spoke to a few people and that’s also where opinions come in. You know, some people said, Why would you do that? And, you know, and some people said, you know, why don’t you want to keep your breasts and other people were like, what’s, you know? Yeah, sure, why not? Who cares? Get them both off. You know, it’s very interesting.

Unknown Speaker 31:56
But, you know, it was I made the decision to have a daughter On the SEC to me, and one of the chapters that I write about in my book, you know, was sort of a, you know, when I relayed that decision to my surgeon, she had my surgeon hadn’t known until I walked in that day, if I was going to be doing a single mastectomy or a double mastectomy, she told me I could let her know last minute. And so when I walked in, she said, One breast or two, and I write in my book like it, it seemed like, Do you want one lump of sugar or two? Like it was so it was just this vernacular that was so commonplace for her, but it was like, it was my breasts, you know? And it was like, Am I gonna get rid of one or two? And it was so you know, just really huge, huge. And, and I would say that, you know, there were a few times I thought, was that the right decision? Should I have done that? But ultimately, I think that was definitely the right decision for me. But there were one or two times where I, you know, where I thought maybe it wasn’t, you know, when I was struggling with you know, how am I My identity had changed. And you know, but interestingly enough, I had this when I was when I was born, I had this ugly little mole, sort of between my on my chest between my, between my breath if we will mall and so when I was about to have my surgery, my plastic surgeon and my surgeon said, Can we get rid of that mole? And they’re like, it’s so ugly, can we please get rid of it, you’re going to be out, you won’t feel it, you know? And, and it was this is sort of one of those emotional pieces, right? It’s like my identity was changing so much in my eyes, that this mole was like, a piece of me, right? And I’m like, No, you can’t take my mole. This mole is part of me and I’m keeping it and I kept my mole. So you know, these just these, these emotional, psychological, you know, metaphors, I guess for change and developments. You know, stay with

Suburban Folk 33:59
us or You surprised me I thought you were gonna say that you said okay, yep, let’s let’s do it. Or at least I’m getting something out of this.

Unknown Speaker 34:05
No, I kept my ugly mug.

Suburban Folk 34:09
So, so surgery presumably went off without a hitch I’m guessing and what was the recovery and road like after that

Unknown Speaker 34:19
so having a double mastectomy is actually a really painful surgery and it’s and it’s multiple surgeries. You first have the ultimate surgery to you know, to remove your, your breast tissue and and it’s a very painful surgery to heal from. They put something underneath the chest, we’ll call these these tissue expanders and then you have to wait a period of time for them to start. They pretty much even though I had silicone implants, they they pretty much over time, tried to fill the breast tissue with sailing to get you to the same breast size that You were originally and that takes, you know, a time period. And my plastic surgeon was so wonderful like he would you know, he just he, each week, you know, he would stop me with say leave and he would have me go up to the receptionist and he’d be like, Go ask her, you know what she thinks and it was very funny and very playful. And, you know, and, and, but it’s a it’s, it’s a several month process and it is an extremely painful surgery and, you know, it’s like, behind the chest wall and, you know, it’s, it’s, it changes your mobility. You know, it’s an it’s frightening to go through all of that, but ultimately, you know, I had the reconstruction there are some people who have breast cancer and have a double mastectomy who elect not to have reconstruction for me that was, you know, never a consideration and I feel incredibly blessed to that I was able to have reconstruction Now I have Pamela Anderson boobs, I’m going to be the hottest, you know, grandmother in the nursing home. So, yeah, so that was just, that was my surgery and, and really after the surgery and after kind of getting back on my feet, and you know, a few months of sort of developing mobility and strength again in my chest and you know, being able to fully move my arms, then it was really mostly the psychological adjustment and seeing myself in a different way and emotionally, you know, just having a big change in my identity. You know, once again, I was 37 years old, and you know, and it just, you know, it was it was a lot and I also at the time wasn’t open about it. As I said, very, very few people knew what I was going through and, you know, so here I was, like, going to work every day and nobody had any idea what I was going through and here I was showing up. I was ready My daughter’s Brown, a troop leader, and I was in the PTA and nobody had a clue. You know, I didn’t miss a beat. So there were some advantages for me for that, because I continue to go on with my life. But in terms of social support, it was more limited because I had only shared it with a few people. But once again, that was, you know, really where I was at my own psychological adjustment, you know, to my identity changes. And as I said previously, that changed over time

Suburban Folk 37:30
and with the decision for the double mastectomy, did that indeed end up limiting the amount of checks that you had to go through to make sure that everything was okay after you healed from surgery or I mean, I’m sure it’s hard to tell because you can’t compare it to the thing that didn’t occur. But do you have any idea if it did at least limit the amount of

Unknown Speaker 37:56
Yeah, just checkups 100% after has double mastectomy, like really the, you know, occasionally I’ll have like a scan, but for the most part, it’s just my oncologist. You know, like really doing like just a touch touch test for any possibility. You know, even though I had the double mastectomy, I still had the possibility of recurrence, which I told you I did end up having, which is another fun story. But I always, you know, sort of joked with my oncologist, I would say, you know, if he was, if he was examining me, you know, I’d say, I said before you touch my boobs, you have to put $1 in the jar, you know, comes in the room would have to put $1 in the jar and um, I remember when I did have my recurrence, I was getting radiation and I was, it was I was actually being marked for radiation before I had radiation and I was I was really traumatized by the whole experience of a recurrence and I remember trying to be positive and I said to the, one of the technicians in the radiation room I said, anybody in the room I said, if anybody in the room if you touch my boobs, you have to put $1 in the jar. And she said, Are you kidding me? She said it’s only one boob, you’re only getting 50 cents. And so you know, things like that, that are you know, that, that help that that, you know, the it’s a positive interaction between health care providers and patients and these things are, you know, I’ve read a lot about this in my book, the you know, the small things that healthcare providers can do the small things that the small interactions that are really meaningful.

Suburban Folk 39:33
Suburban Folk is part of the pod all the time podcasting network with 11 other great podcasts, including the round and round podcast. Hey, this is Jeff. I’m Chris. We’ve been friends acquaintances,

Unknown Speaker 39:46
friends, shipmates do come on. We’ve been friends. Fine. Sure.

Unknown Speaker 39:50
Whatever. We’ve been friends

Unknown Speaker 39:53
for. 23 No, 24

Unknown Speaker 39:56
whatever, dude, it’s been a long time.

Unknown Speaker 39:58
No kidding. To show called round and round,

Unknown Speaker 40:01
we discuss the worst 10 times the best headlines

Unknown Speaker 40:04
we can find out for signs of the Cold War heating up again and desperately try to find some good news to celebrate. Occasionally we delve into important topics impacting the world, the nation, or those around us.

Unknown Speaker 40:17
And every once in a while we take a break from the real world to talk about new movies or to revisit and reimagine old movies we love. Find us at r&r, the podcast comm tweet us at r&r the podcast and download round and round on Apple podcast, Spotify, I Heart Radio, or wherever you cast your pods. Join us every Wednesday, won’t you? I wouldn’t recommend it. That’s fine.

Suburban Folk 40:44
It sounds like you’ve had a wide array of experiences with the healthcare providers that you’ve dealt with is that just different personalities? Was it certain

Unknown Speaker 40:58
specialties were different than others? I myself, I’m a health care provider. I think that health care providers in general, need so much education on how to more effectively work with patients. There’s so many things that just people aren’t aware of, you know, things like ways that a patient can quickly be traumatized. You know, there’s so many ways that patients are disempowered, you know, from the moment they walk in, and they’re, you know, and they’re not even like a full person with dignity when they’re, you know, cold in a room and they’re wearing a little hospital gown. So many things that healthcare providers might do, that they don’t realize they’re conveying a lot of messages to a patient. You know, one of the things I talk about in my book is non verbal disclosures. You know, there’s a there’s, there’s the spoken word, right, but what we know about nonverbal communication or body language is that the spoken word really only is about 30% application. Like, there’s about 70% of the message that’s nonverbal. So if a person is saying to you, you know, with a straight face, I don’t know any information, you know, I have your slide in front of me, but I don’t know any information, but their nonverbal disclosures are saying, something’s terribly wrong here, the patient is going to pick up on that you see it, you feel it, and it just creates immediately an environment of mistrust. And so these are things that healthcare providers in general really need to be aware of, you know, just in terms of making a person feel whole, you know, they’re there ways that a healthcare professional can interact with a patient that makes them feel very pathologized. You know, when you’re not looking at them when you’re writing notes the entire time you’re speaking to them. There’s a an article that I read that said, if you are a health care person Think about if you couldn’t speak at all, and you could only use your body, what would you be saying to your patients? Right? Like, if you couldn’t speak at all, how would you be committed, right? And that’s really an important thing. And so these are a lot of the things that I try and learn from, you know, as with my experience working with patients, I try really, really hard to connect with people and hear what they’re feeling. But, you know, I’ve had I had some very profound experiences where I felt very pathologized and I felt literally, like a pair of sticky breaths. And then I had some interactions where I felt really whole and that I was a mother and a psychologist. You know, I remember I had in in with my initial, one of my initial scans, I had a woman here I was that they were doing a needle biopsy, and she knew I was pregnant and she knew I was a psychologist, and here I was terrified. Literally terrified because I thought I had cancer. And she started talking to me about her son who she thinks has ADHD. And she wanted my advice. And, you know, somebody on the other end, May, you know, somebody out there may think, Oh, that’s so inappropriate, you know, this here, this woman’s going through her own trauma and this woman to ask her about her son, but the reverse is true. You know, when somebody is sick, they need to be thought of as more than a diagnosis, they need to be seen for their whole identity. You know, our illness is just a piece of who we are. And so, no, I’m a psychologist, and I know a lot about best human beings and I know a lot about ADHD. And so the fact that this woman saw me still as a valuable person who could, you know, help her when I was so helpless, was really important to me. And I had just had one other interaction that I thought was so profoundly beautiful and funny. When I Had my recurrence. I had gone through a week of chemo and I had this horrible, horrible debilitating headache. And my oncologist said, I don’t want you to worry. But I would be remissed. If I didn’t give you a CAT scan, you know, we just want to make sure that there’s no metastasis to your brain. It was hard, terrifying, absolutely horrifying. And so here I was re traumatized again. I am going in my little hospital gown and my booty sticking out and it’s cold. And I walk into this room and this young woman, she was probably in her late 20s. She saw me and she said, she takes doing an intake on me before I get this cat scan of my brain. And she said you have the best biceps. Wow. And then I said, Oh, I’m a personal trainer. And we started talking and she wanted to hear my story. So I told her my story, and I was literally about to go like lie on this. lab and have my brain CAT scan. And she said, Can I ask you? She said, What exercises can I do? Because my booty keeps sagging, like, what can I do? And so I’m like, you know, she’s like, Do you mind? And I’m like, no. And then so I start telling her, you know, you could do these Romanian deadlifts, and he’s walking lunges. And then she walks me into the scan room. She has two two young friends. She’s like, you guys. Like she’s a personal trainer. I was just asking her about my butt, you know, and they’re like, Oh my god, what can I do? Like I, you know, I’m doing the squat, but I’ve done that. And here I am, like, literally in my little hospital gown, and I swear to you, I am standing in front of them, and I’m showing them how to do the perfect squat. And as I’m doing this, like for those brief moments, I’m not the sick patients, you know, who may have a brain tumor. I’m a valuable personal trainer, you know, and, and so that was such an empowering important and final moment. And then when I got on that slab, you know, that cold metal slab and how to have the scan. I was much calmer. And I felt very supported by these women. I felt like they were like my, my personal training sisters. But more importantly, you know, I remembered that, you know that there’s a lot more to me than this, you know, then this cancer.

Unknown Speaker 47:25
So those were some positive experiences. And unfortunately, I had, you know, several very negative ones as well.

Suburban Folk 47:30
Well, it sounds like with that last experience, they’re adding a sense of normalcy, which you probably didn’t get on a regular basis. And then I think what you’re describing is a sense of purpose. Absolutely. Regardless of what’s happening in anybody’s life. I think a sense of purpose is crucial for anybody to feel useful. So, so that does sound like a great interaction. Now I have to ask, like you said, with the neck negative ones, did you ever call out any of the clinicians that were being more cold?

Unknown Speaker 48:06
I did. And I think that that has also been part of my journey. You know, my first really, really negative interaction, as I previously discussed was with my, my gynecologist, you know, who, as he was relaying, to me, this life altering cancer diagnosis was berating me for not getting a mammogram earlier, you know, and there was no medical reason why I should have, I think, you know, looking back, I kind of think that he was thinking about his own liability. But in the moment, it was incredibly traumatizing. So I had for many, many years wanted to write him a letter, just sort of telling him how much he traumatize me. And, unfortunately, I never did. But I think that and I had wanted to, but I never did. And I think that that desire and that unmet need to sort of stand up for myself is something thing that stayed with me. And so anytime that I experienced any kind of injustice perceived injustice that I experienced from any healthcare provider, ever since then I totally stand up for myself. I had once an ophthalmologist who asked me what my history was, and I told him I had breast cancer and he wants to know what medication I was on on and I indicated the particular hormone therapy that I was on. And he said, Oh, well then you know, there’s a there’s a since you’re on that hormone therapy, there is a risk that your cancer could have metastasized to your eyeballs. So I need to check the back of your eyeball because there’s a possibility that you could have a secondary cancer. And it was just a matter of fact, you know, bit of information that he wanted to communicate to me and I was absolutely traumatized, like traumatized. And I sat there with him, checking my eye and you know, and I I said how long until you have the results. And he said, you know, you’ll sit outside and you know, and it should be a couple of minutes. And I literally was completely traumatized. And when I left his office, I came home, hysterically crying. And I lit I mean, I sank. It was a devastating experience. And I was so upset by it, but I took that sadness. And I was like, I’m not going through this again. And I called him and I told him, I said, I need to educate you on, you know, what just happened and how you made me feel. And I want to relate to you. You know, what a patient goes through when they’ve experienced trauma and how easily they can be re traumatized and what you need to know as a health care provider to make sure that you don’t re traumatize somebody. And I was very kind, and I relayed all this information to him. And he was incredibly kind and loving and apologetic and received it very, very well and total He had no idea and he was extremely thankful that I educated him and that he would use this information going forward to be a better clinician, and I will go to him forever, because he was open enough to hear me and, you know, incorporate my feedback. And I love that. And so I have done things like that routinely. Even with my veterinarian the other day, who was talking about my dog, when and the door was open, and he didn’t, you know, he was talking, he was training students and intern, but he had the door open, and I could hear the feedback from the other room and I was waiting for results about my dog. And I was, you know, hearing things that he was talking about, and he had no knowledge that I was hearing them. And when he came back in the room, I you know, I once again, I say and I try and say it in a very nice way, but I no longer I’m able to sit by and not advocate for myself or future patients, I think I cannot do it. And if somebody doesn’t receive me, well, that’s okay. But I now recognize that I have a choice and my health care. And that’s a real way for patients to be empowered to exercise their choice. And so if somebody can’t hear me, that’s okay. But I will go to another health care provider. You know, so many studies show that our relationship to our health care team actually can impact our mortality. You know, your relationships, your health care team is really, really important. You need people who are invested in you and who believe in you. And so I don’t take that for granted. I don’t minimize that in my own life,

Suburban Folk 52:42
making sure that you pick the right provider, I would think just even the characteristic of being willing to always improve is something you’d like to have, especially from a healthcare provider. So how they take feedback from any person probably would be good knowledge to have just in how they view improvement in their world just in general. And speaking of improvement, you mentioned personal trainer, my understanding is you went down that path of fitness and ultimately becoming a personal trainer during your treatment, when did you decide to pursue that and what is it about focusing on your fitness that was a help ultimately in dealing with your your cancer?

Unknown Speaker 53:27
So immediately after my breast cancer diagnosis, I read an article I started reading a lot of articles about cancer, and I read that sugar feeds tumors. And so I was like our self professed sugar addict, I would you know, I would inject Sour Patch Kids like heroin, and so I so I literally gave up sugar like instantaneously and even at the hospital, my brother. He was one of my first visitors and he came with this giant bag of gummy bears. And I didn’t eat it like it was it was literally like sugar is going to increase my tumors, and I want no part of it. So I started dramatically changing my diet. And I also read lots of articles about exercise and the efficacy of exercise and how it’s correlated with a decrease in breast cancer recurrence. And, you know, and so, because I felt so out of control in my life, I needed a way to feel back in control. You know, as I had mentioned to you, I never felt sick, I didn’t look sick. And here, you know, the universe was saying, then I know you are sick. And so I felt very betrayed by my body, and I felt very out of sync. And so I needed to find a way to regain a sense of control. And so exercise and diet were the two ways that I felt very in control. And so I started extra and I had always loved exercise, but I started exercising much more. And I started to get more into it and the more into exercise I became, the more strong I felt and as I got stronger and stronger, I felt like there’s no way that I could be sick. Like, I felt so far away from being sick because I felt so strong and healthy. So, you know, even with the diet and exercise, it was sort of like you told your body to do this specific thing. And it was going to do it, you know, if you fed it protein, your muscles were going to grow, you know, and so, I really love that and it was tremendously helpful for me and tremendously healing. You know, and even just metaphorically exercise, you know, like, literally when you do a push up, it’s like holding yourself up and supporting yourself in the world. And I saw a lot of these things as metaphors for life, you know, that like when life pushes you down, you push yourself back up, you know, and you support yourself and hold yourself up in a push up. And so I started getting really into diet and exercise. And I actually was speaking to a neuro psychologist. A friend of mine and I was telling him how much I loved exercise and how, how much I thought it helped me and how I thought it could help my patients and I was reading lots of articles about, you know, exercise and how it decreases depression and anxiety and certain foods and I was starting to get really into this mind body interaction. And this neuro psychologist told me that exercise was the only one proven modality to ward off dementia and, and how important it was. And he said, you know what you might want to think about incorporating exercise with your patients who have dementia. And all of a sudden, like this whole idea clicked. And I was like, I’m not going to just, you know, incorporate it with my patients who have dementia, or like, I’m totally into this. This has helped me so much. I’m going to open up a center and I’m going to do this mind body thing where I incorporate psychotherapy and exercise. And I did so I opened up the centers called the metamorphosis center for psychological and physical change. And I have this very eccentric office, it’s half gym, and half stodgy psychotherapy office. And I do amazing things with with exercise, I incorporate it with so many different patients in so many different modalities and I just believe in it so much. I work with kids who are being bullied. And so outside of the traditional psychotherapy where we might talk about social skills or self esteem, we incorporate exercise where I you know, might have this young man close his eyes and as he’s doing a bicep curl as he’s bringing the, you know, the, the dumbbell to his, you know, straight up to his arm or whatever I have him envision, literally becoming physically and emotionally stronger and we work on this visualization, you know, for a portion of our therapy. And then we, you know, incorporate the regular psychotherapy. And I just found that these combinations of this visual imagery, and psychotherapy and exercises, very, very powerful.

Unknown Speaker 58:12
And so it’s helped me tremendously. I can talk on and on about all these wonderful things that I do with exercise and psychotherapy, but it’s helped me phenomenally and I love it. And so along the way, I decided I wanted to become a personal trainer. I started working with a personal trainer, and she taught me a lot. And then I started, you know, reading this thousand page book. And you know, while my kids were a kumaon, or gymnastics, I would, you know, pull out this book and learn about anatomy and physiology and, and then I would go to the gym and learn all these things. And I eventually became a personal trainer. And my trainer, who was training me was a professional bodybuilding figure competitor and she I used to say to me, are you going to compete one day? And I was like, do you mean Am I going to stand on stage and stripper heels and a bikini and flex my muscle, you’ve got to be kidding me. And she would say there’s a lot more to it than that. And I was like, okay, it’s totally not happening. And as time went on, I was about three years past cancer diagnosis for years. And all of a sudden, I’m becoming like this muscle head, gym rat, living in the gym and eating really clean. And I would have more and more people start walking over to me saying, Are you competing? Are you doing a show? And all of a sudden I started thinking, this might be a great way to mark my five year anniversary. And I thought about how it was like the one way where I felt back in control of my body and that it would be a beautiful tribute on my five year anniversary to do this show. Where I was literally saying To my body, you know, I’m going to exercise and you’re going to grow muscles this way. And I’m going to restrict my food this way. And you’re going to respond with, you know, fat content this way, like, and it totally got me back in control of my body. And it was a beautiful experience. And so since then I, you know, I’ve done a few senior competitions, and I’m hoping to rock my bikini again sometime this year.

Suburban Folk 1:00:26
That’s awesome. In the one word that you just mentioned that I was thinking, as you’re describing, your journey is control and everything that you’ve been through. I’m sure there was a sense of being out of control as you’re getting the initial news and working through treatment. And I think when you think of most things fitness and dieting related, these are all things that any person can control. So it makes a lot of sense, that that would be something that you’re able to gravitate Towards. And it also makes sense for your patients who probably feel that sense of being out of control like bullying, like you mentioned,

Unknown Speaker 1:01:08
that they feel powerless to incorporate these things so that they have something that they can keep in control. Absolutely. And studies show that exercise is as effective as some antidepressants like, our brain literally gets the neurotransmitter serotonin when we exercise, and that’s responsible for our mood and our appetite and our sleep and motivation. And so we get that naturally from exercise. So it’s it’s a win win.

Suburban Folk 1:01:35
I’m a runner for most of my exercise. And while I won’t necessarily say I know exactly what the runner’s high is, I do get certain periods where I just feel like I can rip off mile after mile and definitely afterwards, whether it’s the kids or work or whatever is going on. It doesn’t get to me as quickly I think When I’m first done, absolutely I run so there is definitely something to it by mood altering.

Unknown Speaker 1:02:06
Yeah. And those strains that you get, you know, physically translates to mental strength, like you take that physical, you know what you take the mental strength that you get, and you translate it, it applies to the rest of your life if you could, you know, tackle these goals in the gym and raise your weight and you know, and do these great things with your body you carry it through everything you know, and and things that you have to deal with for the rest of the day. They just become easier, make sense, and is

Suburban Folk 1:02:33
something that I think people should keep in mind. So before I let you go, let’s talk about the book. So you have a book coming out in the very end of February, what made you ultimately decide that you wanted to put your experiences down so that it’s something that people can pick up and draw inspiration from?

Unknown Speaker 1:02:54
And you know, I have a very unique perspective since I’ve seen cancer for both sides. I From a research standpoint knew a lot about cancer and coping. And I obviously from a patient perspective, had my own experience, I really wanted to write about that. I wanted to share ways that patients could start to feel more empowered with their experience with healthcare. I wanted to teach them about better ways to cope that I know about as a psychologist through research, you know, those are diet and exercise that we talked about, but also humor, gratitude, mindfulness techniques, visual imagery, social support, all of those things are very, very important. And I write about all of them and you know, backup all of those techniques with research. I also wanted to educate loved ones about the ways that they can help someone with cancer or offering concrete assistance like driving their kids somewhere or saying, you know, taking them to chemo. Many people say, you know, let me know what I can do for you. But these aren’t helpful because somebody who’s And vulnerable is not going to go out of their way to, you know, to put themselves out there, they, they’re struggling enough. So that you know, as much as that person might be willing tensions and say, you know, let me know what I what you need, it’s probably not going to happen. So what would be more helpful is to say like, let me take you to chemo or let me cook you dinner. And so I talk about, you know, techniques for family members. But I also talk a lot about ways that they can not victimize somebody twice. You know, something that I experienced a lot was what I labeled interpersonal betrayal. And what I mean by that is that loved ones friends and family, you know, they are in need of support and coping with the patient’s diagnosis themselves. They’re traumatized themselves. And so one of the ways that they cope, is they talk to their friends and family. They talk to other people about you know what, they’re loved. One is going through. The only problem with that is that the loved one or the patient might not want other people to know. Right? So when I was going through cancer, I had many people come over to me and say, I heard you lost a baby, I heard you have this, this surgery. And some of these things I hadn’t even shared yet with my children. And so that was a horrifying experience. So one of the things that research tells us is that when somebody is disempowered, one of the ways that they need to regain a sense of power is to be able to tell their story to whom they want, when they want and then the capacity that they want. And so I try and teach friends and family members, you know, these things that research tells us so that they can be more helpful. And then I talk about health care providers a lot and ways that health care providers can, you know, be more sensitive and treat their patients with greater dignity and respect.

Suburban Folk 1:05:57
How long did it take you to ultimately come? pile all of your experiences and then get the book written.

Unknown Speaker 1:06:02
I started writing my book

Unknown Speaker 1:06:06
in 2007. And I shelved it for a very long time, because psychologically, I really wasn’t ready to put myself out there. And then in 2014, seven years later, I took it out. And I kind of wanted to start writing again. And I had written maybe a quarter of the book, and I was ready to finish it. And that’s when I had my recurrence. So it was like a whole other chapter that I wasn’t planning. Sure, but I really I would say from 2014 is when I really started writing, and you know, when I finished it, and it’s out, and I’m super proud of it. You’ve been writing the book

Suburban Folk 1:06:45
during your experiences and then like you mentioned, life being what it is throwing extra surprises extended maybe longer than you had thought. So what are your future plans after Again, the book comes out on February 25 2020. And full disclosure, we’re recording this just before the book comes out. So I’m really excited to see its debut hope to hear from you about how it’s doing and how your promotions are going. What does the future hold for you beyond the book release?

Unknown Speaker 1:07:20
Oh, I hope the future holds lots of growth and, and good things for me. But um, I am going to continue growing my metamorphosis sensor, which I really love. I’m going to continue public speaking events on Mind Body topics. And I am super excited about the release of this book. I’m hoping that it’s going to help a lot of people. And I also plan to write more, not necessarily about cancer, but I have lots of ideas inside of me. And I have my first book signing coming up on March 4, set book review in Huntington and I’m super excited about that. And Yes, that’s my story.

Suburban Folk 1:08:01
Very cool. Well, if you find yourself in Virginia, you’re gonna have to let me know. So I can stop by for a book signing, or at least just to say, Hello.

Unknown Speaker 1:08:09
I would love that. I would absolutely love that. And maybe we’ll go for a run.

Suburban Folk 1:08:15
That’s right, well, maybe if I can beat you in a run, then you could take me to the gym and show me what lifting weights.

Unknown Speaker 1:08:23
That sounds great. It’s been such a pleasure speaking to you.

Suburban Folk 1:08:26
Yeah, for sure. And again, just reminder to folks that the book is chemo muscles lessons learned from being a psycho oncologist and cancer patient. And Rene, it really has been a pleasure to speak to you and for you to share your experiences. Before we go. Can you go ahead and share your contact info with folks where they might get a hold of you on social media, and then again, any upcoming events that you’d like to let people know about?

Unknown Speaker 1:08:51
Sure. So my first upcoming event, my first book signing is Wednesday, March 4 at 7pm. And that’s at book review in Huntington. Long Island, New York. My website is Dr. x Kolbert calm. And that’s Dr. E x. e L is in love B is in boy e. r as in rabbit T has been Thomas Comm. LinkedIn. It’s Rene exel Bert and twitter at Renee x Wilbert and Instagram Dr. dot Rene dot excellent Bert. And my book is February 25, mascot publishing and it’s chemo muscles lessons learned from being a psycho oncologist in cancer patient.

Suburban Folk 1:09:32
And I know it’s available on Amazon. Are there other places that you’d point folks to to get the book,

Unknown Speaker 1:09:37
mostly Amazon, it’s in selected bookstores, and I’m not going to try and list all of them now, but definitely on Amazon, definitely on Amazon.

Suburban Folk 1:09:45
Okay, that sounds great. Well, I knew I wouldn’t be disappointed. Like I mentioned when we started our conversation, and I definitely was not again, I really appreciate your time and we will be in touch.

Unknown Speaker 1:09:54
Thank you so much. Thank you. It was great speaking with you. Thank you so much.

Suburban Folk 1:10:00
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Transcribed by https://otter.ai