Theresa Brown, Ph.D., RN, BSN - A conversation about Breast Cancer - Going from Oncology Nurse to Cancer Patient
Theresa Brown, Ph.D., RN, a New York Times bestselling writer of Healing: When a Nurse Becomes a Patient, explores her breast cancer diagnosis and treatment in the context of her work as an oncology nurse. When an oncology nurse is diagnosed with cancer, she has to confront the most critical, terrified, and angry patient she’s ever encountered: herself.
She also wrote The Shift: One Nurse, Twelve Hours, Four Patients' Lives.
She writes a free, twice-monthly newsletter on Substack called The Healing Newsletter.
All her books are available at the Permission to Heal Bookshop.
Connect with Theresa
Her Wesbite, Instagram, Twitter.
Resources for FACT and SCIENCE-based information
American Cancer Society
Susan G. Komen Foundation for Breast Cancer
National Breast Cancer Foundation
Memorial Sloane Kettering - The Cancer Experts
Connect with Marci
Theresa Brown, Ph.D., RN, BSN - A conversation about Breast Cancer - Going from Oncology Nurse to Cancer Patient
Theresa Brown, Ph.D., RN, a New York Times bestselling writer of Healing: When a Nurse Becomes a Patient, explores her breast cancer diagnosis and treatment in the context of her work as an oncology nurse. When an oncology nurse is diagnosed with cancer, she has to confront the most critical, terrified, and angry patient she’s ever encountered: herself.
She also wrote The Shift: One Nurse, Twelve Hours, Four Patients' Lives.
She writes a free, twice-monthly newsletter on Substack called The Healing Newsletter.
All her books are available at the Permission to Heal Bookshop.
Connect with Theresa
Her Wesbite, Instagram, Twitter.
Resources for FACT and SCIENCE-based information
American Cancer Society
Susan G. Komen Foundation for Breast Cancer
National Breast Cancer Foundation
Memorial Sloane Kettering - The Cancer Experts
Connect with Marci
Permission to Heal - Episode 89 featuring Theresa Brown
Cause it feels like a failing, It's a breaking of trust. It induces an incredible amount of anxiety. Wanting to understand and not being helped to understand, not being reassured, or, you know, reassurance isn't always appropriate, but in my, with my diagnosis, it absolutely is, and nobody did that. So that's what led me to write the book was. That back and forth between what I went through and then what I suddenly saw was a familiar kind of missing of what my patients were going through when I worked as a nurse.
Hello everyone. I am so thrilled that you are here for permission to heal. I am Marci Brockman, and today I have a conversation with Teresa Brown, p d r n, bsn. She, Teresa Brown is a nurse. She's a writer who lives in Pittsburgh, Pennsylvania. Her third. Book called Healing. When a Nurse Becomes a Patient was published in April of 2022, it explores her diagnosis of and treatment for breast cancer in the context of our own nursing work as an oncology nurse and a hospice nurse it explores all of the emotions and all of the treatment and everything in between that she underwent during her diagnosis and the treatment and the aftermath. I just read it this week in the face of my own breast cancer diagnosis and it really helped me articulate a lot of my own feelings and be a little anxious and nervous because there, and I had, well, I have the same exact cancer that theres had and she's fine . She also wrote a book called The Shift One Nurse, 12 Hours for Patients Lives. She has written for the New York Times for cnn.com, the American Journal of Nursing. She has interviewed on NPR programs here and now, and Fresh Air. She's appeared on Hardball and MSNBC live. Her first book, Critical Care Chronicles her first year of nursing. She also has a PhD in English from the US University of Chicago. And inspired by her kids left academia to become a nurse, a career change that she has never regretted.
[00:01:47] All of her books are listed in the permission to heal bookshop on bookshop.org, and are available now anywhere books are sold. So I hope that you learn a lot about breast cancer and the American healthcare system and how. We fail as a country to take care of people and don't show them the compassion and, and empathy and kindness and patience that they deserve, that we all deserve.
[00:02:24] So it is Breast Cancer Awareness month and. Have been talking about my breast cancer diagnosis all over social media since the beginning of October. My diagnosis came at the end of September, and my big quest in all of this is to urge all of you, every woman out there to religiously go for your annual mammograms.
[00:02:50] Because my cancer and Teresa Brown's cancer were, were detect. Early through mammography and were not palpable, did not have physical symptoms and if it wasn't for early detection, if it wasn't for repeated annual regular imaging, I do recommend going to the same place every year so the same radiologist reads the images and they can be compared, because that's how mine was discovered. There was an asymmetry between last year's imaging and this year's imaging, which led them down the road of further diagnosis and imaging and testing and all of that stuff. So Go get your boobs squished. It hurts. It's uncomfortable, it's annoying. Can be slightly embarrassing if you think about it too much, but do it anyway. It absolutely has a direct chance of saving your life. Thank you so much for being here.
Hello, Theresa. I'm so, so stoked that you're here today. How are, are you. Thank you. I'm good. And I am equally stoked. So , I don't know where that word came from. I never say stoked, but Okay. It's here. Sure. Yeah. It, it's apt. I think it's good. Yeah. Yeah. It is apt. It is apt. It's a bit of a throwback. It's good.
Yeah. So here we are at the end of October of 2022 and it is Breast Cancer Awareness Month. And you have written this book called Healing when a Nurse Becomes a Patient. And you I got up at 4:00 AM this morning before school cause I'm an English teacher and I finished reading the book, Oh. Before. Because I wanted to, you know, I like to read the books that the guests have written, you know, so we can talk about them. And the book could not have been better timing for me. I was diagnosed with exactly the same breast cancer you had. Wow. In the same breast. Wow. Wow. I am so sorry. . I mean, there's a lot more to say, but, yeah. Yeah. There's a lot more to say, but it felt like to me, obviously shitty news. Mm-hmm. obviously no one wants to hear that. And I had a thousand questions after the radiologist said what we thought was a benign something or other actually isn't. It is a, a small eight millimeter, tumor. It's very early, yada, yada yada.
[00:01:27] Right. But when I asked what the next step was, he had a wonderful breast surgeon that he recommends for his own family members who's very highly regarded and Wow. Had all the right fellowships and all the right education and was literally 10 miles from my house. So totally great. Wow. But I instantly knew somehow that I had to take all of this to social media. So from the, the receiving my diagnosis, I've been on social media making videos about how I feel and what I'm learning and how to navigate the process, and it's wow. And, and then I thought, well, I need a breast cancer expert. And with a tiny little bit of Googling, I found your book and I found you.
[00:02:12] And I was like, Holy shit, this is exactly what I need. I have to get Therea . Aw . So you're here. Excellent, excellent, excellent. So the audience already heard your intro, but would you, you know, tell us a little about yourself and. Fabulousness. Oh, well thank you. You're welcome. Let me say too, I'm happy to jump into the breach.
[00:02:38] So yeah, I have been an oncology nurse and a home hospice nurse, and then five years ago I was diagnosed with breast cancer. Like you're small, slow growing, and absolutely terrifying. And it didn't help that I had worked with leukemia and lymphoma patients, bone marrow transplant patients. So really the sickest cancer patients at diagnosis, right?
[00:03:06] That can be found and a lot of them don't do well, although the numbers are much better than they were when I started doing that work, which is fabulous. And so that was in my mind, like I sort of had to do mental readjustment where I realized, wow, this is a, this is a slow growing, very small, non-aggressive breast cancer.
[00:03:30] Your outcomes aren't going to be anything like those other people's outcome, right? It's like your patient's. But also, you know, why didn't any of the clinicians taking care of me tell me that? I mean, no one said that to me. And so it was, it was that experience of this lack of empathy and compassion that followed me all through my treatment, but also led me to reflect on times when I'd been a nurse and hadn't understood.
[00:04:02] Really very much at all what my patients were really going through emotionally. Right. And how small things that we would say, Oh yeah, that was a glitch. Their chemo didn't start on time. Now I understood to the patient. It's huge. Yeah, absolutely. Yeah, Cause it feels like a failing, It's a breaking of trust.
[00:04:24] It induces an incredible amount of anxiety. Wanting to understand and not being helped to understand, not being reassured, or, you know, reassurance isn't always appropriate, but in my, with my diagnosis, it absolutely is, and nobody did that. So that's what led me to write the book was. That back and forth between what I went through and then what I suddenly saw was a familiar kind of missing of what my patients were going through when I Right.
[00:04:58] Worked as a nurse. Yeah. Yeah. You did a really great job. Put your PhD in, in literature in, in English to, to, to good use. Oh, thank you. You write good book because, you know, you really made the, the reader. Feel what you felt when you were working with patients who were, you know, in the process of dying and their, their.
[00:05:25] I forget the, the, the medical lingo, but they're, you know, pain killer machine isn't working. Oh, oh yeah. The PCA pump, right? PCA pump is not working and you can't get the piece. And then there's all this red tape and all this like, you know, medical care for profit kind of overlay and we lose humanity and the process and people are so busy like pushing paper and counting dimes and worrying about the bottom line and the stockholders that they.
[00:05:53] There are human beings behind all of these charts. And that, you know, was just in, in some cases in my life, I've seen and felt medical care like that. Um, luckily so far, I'm gonna knock a lot of wood. Right now. My, my current breast cancer treatment plan isn't going that way, which is a really good. Um, yeah, that's wonderful.
[00:06:21] And it's funny, I got a few reactions to the book where people said, Oh, my cancer care was amazing. Sort of like, Why are you talking about this? Which I found a really strange reaction because yeah, it seems pretty well known that a lot of people find their care lacking and humanity. And the question for me is if your healthcare system can do.
[00:06:47] Why can't every place do it? Of course, we should have universal healthcare for everybody so that yes, the good experiences. That the, I would say some, maybe the majority, who the hell knows that a good portion of us have had should be for everybody. It should be economically based or geographically based, or employer based, or whatever it is.
[00:07:07] You know, you shouldn't have to worry about if you lose your job that you're gonna lose your healthcare. If you switch, if switch companies and you're no longer working for that other company that you, you know, you shouldn't have to worry about any of those things, right? If you live in a small town and.
[00:07:24] Uh, local rural hospital has closed, and now your nearest oncologist is a two hour drive. You know, I mean, Yeah. All these things, um, that leave people bereft and mm-hmm. in healing. I, I emphasize when I went to radiation oncology. The leadership in that clinic must have decided we want to care for our patients.
[00:07:50] It was so different from everywhere else I went. Yeah. I felt that. Yeah. They were kind, they explained, you know, very basic things. There was no, you know, we have a 10 point patient appreciation program. No, it was just civility, clarity. Explanations, respect, um, patients. Yeah, yeah. Things that, that any place can do.
[00:08:12] And that ra on facility was in the same hospital where I got my mammogram, where there was no one there to schedule my biopsy. Where, you know, if people read the book, you know where I got parked in the hallway after my diagnosis. So that I was crying in front of all these other women that no one stopped to ask if you were okay.
[00:08:31] No one had your hand, no one offered you a nothing. Right. You know? And oh, by the way, the woman who needs to make this appointment left already, you know? Right, right. What a hell. Yeah. . And so even in this hospital, there's kind of this pocket of compassion. Mm-hmm. , you know, we talk about clinical excellence, and I think compassion needs to be part of.
[00:08:56] They did it. You know, I don't know why mammography on the third floor could not also pull that off. Right. Same, same facility. That's amazing. Yes. Right. It's amazing. I got my diagnosis and I had no idea what to do. Like there was a thousand questions like, I have cancer. What the fuck does that mean? I've got cancerous tumor growing in my breast.
[00:09:17] I can't feel it. There's no lump. It's less than a centimeter, and it's like right in the middle of the three dimensional center of my breast, so Oh wow. . So even the breast surgeon, like eventually when I found one, um, just she, the, it was only detectable by the 3D mammography machine. Couldn't find it on the sonogram.
[00:09:36] Wow. Um, and, and so I had the radiologist on the phone and he's like, Yeah, I'm sorry, it's breast cancer. We thought it was benign, but it's not. And he says it's a very small, probably five to eight millimeter lesion. It's not even a centimeter. . I'm like, I don't even know what that means. Is a lesion a tumor?
[00:09:55] Is that the same thing? What, what's the next move? Like, I don't know what to, And he's like, Okay, here's the name of a breast surgeon. She's very well regarded. She's got great education. I've recommended my own sister to her, call her. So I, she, he said, I'm gonna call her ahead of time. So they expecting your phone call.
[00:10:13] Wow. And I called. Wow. I called and I got an appointment in 10 days. Wow. Which felt to me like a very long time. Yes. But really wasn't, and. From her. She, she did an exam. She reviewed my imaging. She told me to get dressed, brought my husband into her office, and we sat at her desk and she wrote out and explained, Must have been in there for an hour.
[00:10:37] Wow. She explained everything that was gonna happen. What the tumor was, what The pathology report said. What? It, me, You know, that it was, it was, um, it's it's hormone receptive, which is a good thing. It's less than a centimeter. Yada, yada, yada. It's, it's mostly in the duct, but they're calling it invasive because it's infiltrating the wall of the duct.
[00:10:58] And, and, Oh, that is exactly what I had. Yes. D Cs that becomes invasive. Yes. Right. And um, and so she says, We'll do a lumpectomy. We'll get out to clear margins. We'll do the sentinel node biopsy. She explained to me what that was. And then after that we'll do the pathology of the tumor, make sure we'll figure out the onca type is, which I'm still not sure what the hell that means.
[00:11:21] And test for suspicious cancer cells in the sentinel node. And if there aren't any, you're good to go. And if there are some, we're gonna have to come. Test and maybe, you know, remove some more lymph nodes, um, but should, they're not expecting lymphatic involvement at this point because it's so new. So I'm hoping that that's the way it's gonna go.
[00:11:42] Yeah, that, that sounds wonderful. Sounds like the gold standard. , I started to cry. I had a list of questions that I was looking over my preprinted thing, and she answered every one of my questions and then some. And she actually reached across the desk and put her hand on my hand, and she said, It's okay.
[00:12:03] Breathe. Will take as long as you need to. You're comfortable. Wow. And I was like, Did I just land on another planet? No doctors ever said that to me. Wow. Um, she recommended a radiation oncologist who literally had an office across the hall from her. Wow. So she said, My office is gonna call her office and then her office will call you to set up an appointment.
[00:12:26] And the next day they called. I had an appointment for that following Friday. Like it was, it was crazy. And then she'd suggest I have very large boobs. I wear a GC cop bra and my back. My gosh. Life hurts. Yeah. It's for, it's for, Oh my gosh, that's, that's it for sure. Yeah. Um, and so she suggested that I coordinate a breast reduction at the same time.
[00:12:49] Oh, wow. At first, I was like, What, what? What? Like it didn't even occur to me that that was an option. I'd never even come about it. And I thought about it for a few days and I called her office and she set me up with an appointment with an amazing plastic surgeon who I fell in love with. My husband went with me, we both love him.
[00:13:07] And so November 16th, they're doing the lumpectomy, they're doing the sentinel node biopsy, and they're doing a breast reduction all in one big. That's, and then both of their support offices made all the pre-surgical and post-surgical appointments for me. I didn't have to do anything. I entered the phone, I took all the dates down, and now I just show up.
[00:13:28] Oh my gosh. I'm, I'm having such healthcare envy, . I know. I was like shocked. Like, like I've never. I mean, when I was getting my hysterectomy three years ago, I was the one that had to go hunting for second opinions and figure out all this other stuff. And it, it, I mean, it wasn't as complicated as this obviously, but I, I don't know.
[00:13:50] And then I read your book and I felt, so I wanted to hug you. I felt so bad about how you were treated and having to put all of these pieces together yourself and, and the, the trauma of trying to figure out how to recalibrate your own. Sense of what your cancer was compared to your patient's cancer.
[00:14:08] Like, I, I, I just felt that palpably through your book. It was, yeah. And it, I mean, the other thing is people thought, well, because you're a nurse and you were an oncology nurse, you know what's going on. No, I mean, as I say, um, in healing that I forgot everything I'd ever learned about breast cancer and I wasn't taking care of breast cancer patients.
[00:14:33] But this was not the forgetting of time. Sort of like from school. I forgot this was, this was a kind of weird. My brain doing a, a blockout kind of thing where I'm like, what's, Well, that's a different rabbit hole when you're a patient. Yeah. Like what's staging, what, what, what's hormone receptor positive?
[00:14:52] And so I, I was just like any other patient and needed that tender loving care that I am so happy to hear you are getting. That's, I'm, I'm excited, . Yeah. You know, and I'll just say as a sidebar, Yeah. I met another woman who, um, had also a, you know, similar diagnosis to ours who had always had very large breasts and she was, so, she actually ended up getting a double mastectomy and just, and found it so freeing.
[00:15:28] Wow. Which I'm only bringing up just to. Every woman's experience and every cancer patient's experience is gonna be different. Different. It's gonna mean different things. Yeah. Um, yeah. I mean for, you know, I'm sure she's unusual and finding out Well, yeah. I mean, my doctor was even suggesting as an option doing, doing a prophylactic mastectomy un.
[00:15:55] because we don't know what, you know, at that point, we didn't know what my genetic history was, was, I mean, I, There was no history of breast cancer in my family on either side of my family at all. I'm the first person. Yay. Yeah. Um, always, always the trendsetter. Yes. Um, but so we did the, the, the genetics testing and, and all of those markers, all of the, you know, genetic mutations that would make, uh, an increase the predilection for getting breast cancer at all, or again, aren't there.
[00:16:25] So there was no reason to go that. You know? Yeah. Yeah. Same. I mean, even though I have a pretty extensive family history on my mother's side, my mother didn't have breast cancer. My grandmother did, and several aunts. But I, once I got my genetic results, which were also negative, um, I decided I don't, I don't wanna get a prophylactic mastectomy.
[00:16:48] Yeah. Um, but you know, again, there are women who choose that. And, um, you know, it's interesting that there, I felt. My surgeon was really good at talking about that, at those options, but the kind of, let's sit down and make sure you understand all of this. Um, not, not as good at, um, you know, and he, he was a really good surgeon.
[00:17:14] You know, I, I don't wanna just put it on him. There were other clinicians who could've done that for me. Absolutely. And, and what I've learned since my diagnosis is that most new cases of breast cancer occur without any genetic component. Oh, wow, Okay. Cause I was really under the impression that, because I didn't think I was, I had any of the BRCA genes that it meant that I was not gonna get breast cancer like I thought it was like a get outta jail free.
[00:17:51] You know, but one in eight women, I'm looking at the statistics right now, one in eight women, which is about 13%, will develop invasive breast cancer over their lifetime. Right. And um, 2,700 new cases of breast cancer are expected to be diagnosed in men in 2022. Oh my gosh. Wow. And that the lifetime risk of breast cancer for men is about one in 833.
[00:18:19] So it's much less prevalent, but it still happens. That's, Yeah, I, I know, and I, It must be so hard to disclose that, to talk about. because it's also usually men, much older men. Right. I would imagine. Imagine. Um, and I, I just sort of that generation, you're 70 and you get diagnosed with breast cancer. It must be so difficult.
[00:18:45] Yeah. So, um, emasculating, you know, Yes. I mean, it, it shouldn't be that way, but I'm sure it is. Shouldn should be, but it probably is. Yeah, yeah. I'm sure it is. I'm sure you're right. And then are doing, you know, for years, decades, they've been telling us to do self breast exams, and when you get to be a certain age, you know, you start your annual mammography and, but they don't tell men any of.
[00:19:07] You know, so yeah. How they would even find breast cancer in a man as beyond me unless he sees, feels something because it's so egregiously big. I don't know. That's right. Or has leaking from a nipple or something. That's a really good point. And and I was getting back to what you're saying about genetic cancer.
[00:19:27] I mean genetic risk and the kind of cancer you get, cuz I. to my surgeon. Well, I, I can't have a BRCA mutation. Right? Because those cancers are always really aggressive. Mm-hmm. . And he said, No, no, that's not right. And I said, Oh, fuck yeah. And he said, Oh, just lay it all out there. I'm like, Come on, we're talking about breast cancer.
[00:19:50] You know, , there's gotta be a room for, Gotta be a room. Right. For the fbo. Because that was kind of, that's what I was telling myself, like, Oh, it's small, slow growing. There's no way I can have a BRCA mutation. And I mean, you know, everyone comes up with these things to comfort yourself. Right, To mitigate risk in your own mind.
[00:20:13] Right, Right. Like me telling myself, yeah, I was diagnosed premenopause, but I was really close to menopause. Like that doesn't matter. Um, if you're still getting your period, you're still getting your period. Right? Right. And it's still premenopausal, um, which is slightly higher risk of recurrence. Um, but you know, this is also why physicians and nurses need to take time to really talk with people because there's so much misinformation out there.
[00:20:42] It, yes. And so many things get sort of. Explained, you know, that you don't really know really what's, what's going on. And like you said, everybody's cancer experience is unique and there are bazillion different permutations that this can present. So you know what applies to a specific person's specific case may be very different than someone else's experience.
[00:21:06] Exactly. Great. And I. A lot of issues with Tamoxifen, the drug that women take after they've had the active treatment. Um, Right. And then I found out that some statistics are as high as 50% of women don't take it for five years. That's a recommendation. You take it for five years. Right. You know, my doctor never said anything like that to me.
[00:21:32] She just kept sort of, Aggressively making sure I was still taking it, which I found sort of infantilizing, like I would tell you if I'd stopped taking it. Yeah. And you had lots of, lots of exhaustion and brain fog and Yes. Aches and pains and all sorts of things because of the tamoxifen and Right. And you know, half of women are great on it.
[00:21:55] It means nothing to. That's wonderful, but for the other half you've, you know, you've gotta present honestly what people might feel and, hey, what's the risk benefit here? And, yeah. Yeah. But I'm so, so, so as a postmenopausal woman, cuz I had a hysterectomy three years ago, they wouldn't put me on Tamoxifen.
[00:22:16] Right. They would put you on the drug that you are on now. I forget what that's called. Uh, Arimidex, Which actually I, I also stopped taking, cause I had problems with that too. Oh, okay. You know, I would guess they would put you on Arimidex, but the, if you're postmenopausal, you can still take Tamoxifen. Um, although Arimidex is.
[00:22:36] The recommended drug, but if you're premenopausal, you can only take Tamoxifen. Okay. I mean, there is, there is, there are, there is at least one variant, but it's basically the same drug. Mm-hmm. . Um, it's not like with SSRIs like Prozac and, um, Effexor, you know, they, they're, they're all. Slightly different drugs.
[00:22:58] So one may cause problems for one person and another may be great. Right? These drugs, even when there are different versions of them, basically the side effect profile is the same. Um, that's my understanding. I mean, the, you know, the, and I'm only, I'm only saying that because the science is changing all the time.
[00:23:18] Um, and that's another thing people should know that, you know, you might read an article that's five years old. So many things, and it might be completely out of date. And yet, if you don't have the expertise to read research articles, not that I even am necessarily recommending that. Um, just make sure that the sites that you're looking at, right, the information that you're looking at is as up to date as possible and from reputable places like the CDC or the National Cancer Foundation or something.
[00:23:50] Yes. Or can you know the, something really reputable and. Random thing from even ago. Right. , who the hell know It's, Yeah. Right. . Its craziness. It's craziness. Yeah. Nurse Brown's breast cancer website. . Yeah. Right. Right. But the, the big thing that I have been touting all over social media for the last few weeks is early detection.
[00:24:19] Get your fucking mammograms and they suck and they hurt, but that's five minutes and then you're done. And yeah, without early detection, you and I would've both been in a much more serious. M later on. Mm-hmm. , the tumors had grown and had been so invasive that they become big, ugly, scary, angry things. Um, instead of small, tiny, little angry things that, that are almost equally scary, you know,
[00:24:47] Yeah. And I, I was just on an NIH panel talking about, , are we gonna be able to use artificial intelligence and breast cancer treatment? I was the patient representative and, um, someone brought up this issue of false positives, which if you're aware, were listeners aware of, there's a lot of talk about. We screen women too much.
[00:25:07] We get all these false positives. It causes women anxiety. And I was saying, you know, this is so paternalistic. You know what causes anxiety? Cancer, I think cancer. Right, exactly. And, and having a bigger tumor. Because you know, if you'd been screened two years ago, it would've been smaller. Exactly what you're saying.
[00:25:26] Yeah. And then one of the physicians on the panel, There are situations where we get so many false positives that ends up using up resources. And I said, Okay, well then that is what needs to be emphasized, not women's anxiety. Right. And you know, so if, if you hear, if you're a woman and you're listening, or if you're a man and you're listening and then you're thinking about your wife or your sister, whatever, you know, just don't, don't buy that argument.
[00:25:51] Screening is important. Mm-hmm. . Um, and if there are issues. Screening is, quote, using up resources because of false positive. That's a screening issue. That's an issue with technique and the, the science being applied, you know, don't, uh, don't skip it just because of that, and then have to do more testing.
[00:26:17] Like each one of those false positives is a life that no doesn't have cancer, you know? Right. So if we have the resource and it's meant to treat humans with or without disease, how is it a waste? , Right? And a waste? What are you gonna do? Leave them on the shelf collecting dust and not use them? Right. And why is it breast cancer that this.
[00:26:44] Talked about the most. That's why I don't understand either. Right. Um, yeah. It's a life. You're right. Why not prostate screenings? Right. Or you know, now they're encouraging everyone to get a lung cancer screening. If you ever smoked, get a lung cancer screening. I mean, Right. I don't know the science well enough to know if that's a good idea or not, but there's gonna be a lot of false positives then too.
[00:27:11] Right. I think it's just the nature of medical testing, you know? Right. You have to do repeat imaging or repeat testing and have really expert people reading the images or the tests or whatever they are, and you move forward. I, I, Right. So I agree with you. What's the, I not test at all, and then have everyone die of end stage four cancer and then we need a lot more hospice nurses.
[00:27:38] Like, like either way we're, we're gonna. Issues. So why not, While we can save lives rather than Right. That's a great point too. And um, like you said, you've had a biopsy that was benign. I've had biopsies that were benign. I'm not sorry that that no happened. I was, was stressed for that short period of time.
[00:28:03] Right. Ju that it was fine. Right, right. And I felt like, wow, someone's really looking out for me. Exactly. They're trying to make sure that I'm not gonna die of breast cancer. Exactly. Exactly. Yes, exactly. So's crazy. Even if it's you, you'll, you know, a false positive is a fabulous result. I would, I would love to have had a false positive, so Right.
[00:28:28] Let's go a damn party. Yeah, right.
[00:28:33] I, So I, you know, I have. . I know you wrote in your book about having all sorts of feelings and crying and sort of having trouble managing all of your own internal, your internal monologue while you were trying to navigate, Do I work, do I not work? You know? Mm-hmm. , what might kids doing? What's my husband doing?
[00:28:53] Like you, there's like a whole lot of stuff that you have to sort of figure out and, and. Right now I'm doing really well. I'm having this nice conversation with you, but I had a really shitty day and I. You know, I got these moments where all I think about is the surgery. You know, are they gonna get everything?
[00:29:14] Are, are they gonna get to clean margins? Um, are my lymph nodes going to be clear? You know, will they discover that I need chemo, even though that's not the plan right now? Right. You know, what will the pain be like afterwards because they're doing a whole breast reduction and a breast lift. So it's a huge amount of.
[00:29:32] You know, that's true stuff going on there. And, um, I don't know, there's just like, I really feel like we have a good plan, but there are so many unknowns still that when I allow myself to start thinking about all the things that I don't know, I start, my chest gets tight and I find it hard to breathe, and I know that that's normal, you know?
[00:29:53] Yeah. I wanna normalize that for anybody who's listening that if you are not a little fucking freaked out about this, , if this is your diagnosis too. If you're not a little fucking freaked out, I think you should be concerned . Yeah. You know, like I think it's normal to run the gamut of emotions every day.
[00:30:13] Mm-hmm. , No. That the throws of this, you know? Yeah. And I have a, I have a good friend who's a breast surgeon who. Research suggests you should not have your, your friend be your surgeon. Oh, no, no. Too close. Yeah. But, um, I was talking to him one day and said, you know, I, I just like left to spoon having wine and french fries for dinner.
[00:30:34] There was this, this restaurant, a block from our house that serves these Belgian free, you know, these, they like the best french fries ever, but they're Belgian, it, you know, it's sounds, they're Belgium fries. Sounds really cool. But yeah, so there was, there was a point where, you know, at least once. A week I would, I would have wine and french fries for dinner, , and then like, then I would go and also get this Chinese noodle soup at our local noodle place.
[00:31:01] Um, and, and those things really helped me because yeah, I had the same, you know, I talk about going for a walk in the park with my husband, you know, go for a walk, be in the park, it'll help you feel better. Which did work somewhat, but it, I, I just started thinking about, oh my God, five years. I had five years stuck in my head and five years, you know, what age will my kids be?
[00:31:29] And I j like, I'm in walking in this park and Pittsburgh and suddenly just start crying. Yeah. So I hear you. It's, it is, I mean, I don't think roller coaster even accurately describes it. It's, it's very, very emotionally difficult. Mm. How did you, besides the exercise, which I know you wrote quite extensively about in your book, what other kinds of self care practices did you find worked for you?
[00:31:57] Or do you currently still work for you? Yeah. This is gonna sound like a weird answer, but for me, taking a leave from my work mm-hmm. was probably the most important thing I did because I was working as a home hospice nurse and I, I just felt like I was not gonna be able to see. cancer patients who were dying Yeah.
[00:32:18] And do a good job. I, or else I would do a good job and I would fall apart afterwards. Mm-hmm. it, it just seemed too hard and so. As I write about, part of me felt like, Wow, I'm really failing. Why aren't I tough enough to do this? Um, you know, it's human to read. Yeah, I know. And I mean, we saw so much of that during Covid, right?
[00:32:40] Like, right, Like, we're not superheroes, but yes, because I'm human and it took me a while to accept this is okay. Mm-hmm. take a break. You know, it's time for you to be cared for and, and you can go back to that. Absolutely. So, yeah, if you, you know, if you can afford it, uh, which we could, you know, if, if you're able to come back to your job, you know what?
[00:33:10] Whatever you need to do. To give yourself space. And for some women, they want to keep working. It's a just action. It makes them feel productive. Right. Cancer hasn't won. Yeah. Right, right. I could see that. So it's, it's, you know, I just, I just have the most compassion for women who, uh, have to keep working.
[00:33:31] Right. There is whether they want, want to or not, but, so again, there's no one right answer. Um, you know, I'm sure , I'm sure there are oncologists who would say wine and french fries is not the thing to eat when you have cancer. And like, so what? That's what I did. You know? Right. Every now and then, it's not the main mainstay of your nutritional, you know?
[00:33:52] Right. But every now and then it's, you have to give into that. Exactly. Yeah. Yeah. So I tried to feel my feelings and I also read a lot of Agatha Christie novels. Oh, good. Which, which actually didn't make their way into healing, which is kind of interesting. But, um, I mean, I'm not a huge mystery fan, but somehow I bought one and j it was just kind of perfect cuz it's like there's a mystery.
[00:34:20] So you can kind of think about that. But, you know, everyone still has tea. Nobody really gets upset about anything. . Right, right. I, I. A couple of really stressful years as, as most of us have, yes. You know, between the pandemic and what's going on politically in the country and the divisiveness and everything else.
[00:34:40] And yes, I'm a teacher, so I've been like, on the teaching side of all of this covid nonsense and whatever. I was so stressed and so anxious as the school year was ending that I spent the summer hibernating. Normally, I, I mean, I was also in graduate school again. I'm getting a third master's in becoming a mental. Oh wow. Congratulations. Thank you. So that's my retirement plan. I figure by the time I retire from teaching, I will have finished all the coursework and the licensing stuff to actually be a counselor. Wow. So I was doing graduate classes all summer, so it's not like I wasn't doing anything, but, but I discovered that I fell in love with Regency Romance novels, . Oh wow. And I read 27 Regency Romance novels over the summer, and it was, I sometimes I'd lay in bed for 4, 5, 6 hours at a time and just read, And it was like little mini vacations. I didn't have to be in my body or in my life at all.
[00:35:37] I could just. Go back and, and I've figured out that that's really part of my sanity routine. Whatever works for you is, as long as it doesn't hurt anyone else. Exactly. Exactly. Yeah. Exactly. So you have a newsletter? Yes. A healing newsletter. Mm-hmm. , How do people, what is it about, how do people. It's on sub stack, so if you go sub stack.com and look for the Healing newsletter, it'll come up. If you put in my name, it will also come up and comes out every two weeks.
[00:36:15] And to be honest, I'm still figuring that out what it is, but what it is now is new. It's pretty new. Yeah. So the book came out in April and I started it a little bit before the book came. So, but before and after the book came out, I was a lot writing about the book and where I was gonna be. And now I've transitioned it into writing about healthcare, writing somewhat about what's going on with me and my health, but also thinking about what's going on in healthcare, what to say about that.
[00:36:51] And people seem to like it, it's free. If you subscribe, you can always unsubscribe. And if people wanna know more about me, they can find me at teresabrownrn.com. And one thing I'll offer is if people are reading healing in their book group, I'm happy to zoom in and I actually have book plates. I can sign and mail to you.
[00:37:14] And I've done that and it, I really, really enjoy it. I love getting the chance to talk with other people about not just what they thought about the book, but what's going on with them in terms of healthcare. What are their thoughts about some of these issues? I mean, I, I'm now in a position yeah. Where I talk, talk about myself, but I'm, I'm actually more of a listening person than a talking person,
[00:37:42] Okay. Well, makes sense. So I, I do really. Like learning from other people and hearing about their experiences. So if you go to my website, you can find out how to send me a message saying, Come to my book group, someone else contact me over Instagram, which also works. Nice. Yeah. I'm gonna have all of the links to all of these things.
[00:38:03] Great. For the show notes. So, um, and all of the books that you have written are already available on. The permission to heal bookshop on bookshop.org, so Oh, nice. With people. Oh, thank you. Sure, sure. So if um, people want to pick up a copy and I'm assuming that they will, cuz it was great. Um, and perfectly time for me.
[00:38:26] Yeah, , you can pick up the book, that will be really great and you can support local and independent bookstores while you're doing it, so that sounds wonderful. Why not? . Yeah. So I, um, always end each interview with the six quick qu seven quick questions as of this, this season. Are you ready? Mm-hmm. . Okay.
[00:38:46] What six words would you use to describe yourself? Yeah. Gosh, I saw that, uh, here's what too. I thought of patient and also inpatient . Okay. It works. Uh, patient inpatient, uh, hardworking listening. I don't think I can come up with six kind. Mm-hmm. , uh, intelligent, compassionate. There you go. Very good. Thank you're, thanks for the assist.
[00:39:14] Sure. What's your favorite way to spend a day? Wow. I would say being outside. Maybe I'm going for a great hike. Maybe I'm reading a great book. Definitely. I've got some tea. Yeah. You're an outdoor girl for sure. Yeah. Yeah. Um, what's your favorite childhood? My pony. I had a, not because I was an Aris, but because I grew up in southern Missouri and my parents got me this mean old Shetland pony that I loved.
[00:39:45] It was mean. Yeah. I think all Shetland ponies are kind of mean. Oh, I don't know. Anything idea? No, no, no. I don't know anything about horses, so Yeah. That's okay. I, you know, I still loved it. Yeah. What was the name of the horse? Uh, it, it had different names, but I decided the ultimate name should be Sebastian.
[00:40:06] Ooh. I thought that was a very sophisticated name. You know, when I was eight. Yeah. Yeah, that sounds good. Yeah, that's appropriate. Yeah. What's your favorite meal? Well, obviously French wine and french fries. Yeah, . Nice.
[00:40:24] Um, anything else besides wine and french fries? Belgian French. Oh. You know, any kind of like, I make this, uh, pasta pomodoro with this like long simmering tomato sauce, any recipe that kind of has a zen to it, a chicken noodle soup can be the same. Sure. Um, I also love a good blt, which happens to be my initials backwards, so Oh, that's cool.
[00:40:51] Yeah. . That's awesome. Uh, what one piece of advice would you like to give your younger self? Don't think you have to know everything. I mean, don't think you have to have the answer. You know, life will unfold. That's okay to say you don't know. Yeah. And to make a plan and have it change cuz it's gonna anyway, so, Exactly.
[00:41:18] Yes. . Yes. Yes. What is the one thing you would most like to change about the world? Oh, I wish people would be more kind. Mm-hmm. and that we had universal healthcare. But yeah, I knew that was gonna be part of it. Yeah. I was just waiting. Of course. Yeah. I, I think that any.
[00:41:45] Business com, it's, I can't even use the word business. I think that anything that involves the care of humans should not be for profit. Yes, I 100% agree with you. Whether it's healthcare or it's education, Anything where human beings, which are an unpredictable unquantifiable, Quotient. You, you can't put a bottom line on compassion.
[00:42:14] You can't put a bottom line on whether a student learns something in a certain period of time. You know? Right. You can't. You can't make these things for profit without losing the fundamental unknown or the fundamental quality. The person and the relationship that makes either the healthcare or the education happen.
[00:42:40] I don't know if I said that clearly. You did. I, I think that's actually quite brilliant. Yeah, Because people are unpredictable. Their needs cannot always be pinned down in an easy way. They can't always be categorized no easily. And like your patient who needed an extra fentanyl patch in the middle of the night, right?
[00:43:05] You shouldn't have to go through 14 layers of bureaucracy to get a person who is going to die in a matter of days, the pain medication that he needs to leave life in a dignified way. Right? And to not be tortured until the end. Right. You know? And that may have cost that company a few extra bucks. But tough shit.
[00:43:25] If that bothers you, don't be in that business. Right, right. Yes. You know, like, Yes. I just don't, I don't, I just, it makes me so angry. You know, I, I hear about, you know, since, since, since forever as an educator, I've been hearing about, I know this is a little bit of a tangent, but my audience is probably used to it by now.
[00:43:46] Um, I've been hearing about, you know, the charter schools. Mm-hmm. take away taxpayer money. From the public schools. And so that school choice, yada, yada, yada, actually takes away from the quality of education that the school, a public school can provide for its pupils. Mm-hmm. . And they don't have to adhere to the same standards, quality, um, um, skills, uh, Right of anything.
[00:44:24] So I, I mean, I just heard a story the other day about, um, a a young person who grew up in Utah who graduated high school from a charter school that was basically like kindergarten. Here's, here's your high school diploma for doing absolutely nothing. Wow. And wow. How, how was. A benefit to anybody. It's not a benefit to that kid.
[00:44:50] It's not a benefit to the society for that entire kid's life. All of those interactions that that kid has, he's not going to have. What I think the United States likes to think is the, the, the common or acceptable standard for high school public education in. You know, Right. And right. And it's at some level, it's unpatriotic.
[00:45:21] We are talking about, well, we have to complete in a global economy and we need workers who can do blah, blah, blah, blah, blah. And yet we're not willing to invest in public education. No. And that just doesn't make any sense. And by the same token, there was just a report that came out from the Commonwealth Fund saying, American life expectancy is shorter.
[00:45:43] Than in other countries that have universal healthcare, so they spend less money. The life expectancy of their citizens is longer and I feel like this is and better quality healthcare throughout their, Yeah, this is important. Like you are not gonna live as long if you live in the United States and are using American healthcare.
[00:46:02] Yeah. My, my, my dad and my stepmom a bunch of years ago, they used to be world travelers and I guess maybe five, six years ago, took a trip to Iceland and my dad occasionally had these episodes, these neurological memory lapses. Hmm. Um, I guess the precursors to the Alzheimer's he has now. Oh, wow. Um, sorry.
[00:46:25] Yeah. Yeah. Um, again, it is what it is. Nothing you can do about it, but accept it and figure out how to carry on. But he was in Iceland and had one of these episodes and the tour guide brought them to a hospital. Within two hours, he had been triaged, He had seen the ER person, he had seen a neurologist. Wow.
[00:46:50] That gave him an mri, communicated with his neurologist in New York, and there was no charge. Wow. Wow. They were like, We have to give you some money, like it has to cost something. Doesn't close anything. Universal healthcare. This is what it is. You're a visitor in our country. We don't want you to get sick here.
[00:47:16] Here you go. What the fuck is that? Why can't we, They could do that in Iceland. Why can't we do that here? Right. Really? It's true. So here he comes back and he has to call and make an appointment and he has to wait to see the neurologist. And then it's another appointment and another wait to go see the mri.
[00:47:38] To get the mri. And then another wait to have that read and have the report sent back to the neurologist, and then another visit to the neurologist to go get the report explained and then the treatment. And each time, each step, there's a wait. There's more phone calls, there's more anxiety, and there are more copays.
[00:47:55] Right, right. Right. It doesn't make any sense whatsoever, and you start to just hear the cuing. Yeah. I mean, I, I am not by nature a cynical person, but I feel so cynical about our healthcare for exactly all those mm-hmm. things that you're describing. Even the follow ups, they had me every three months doing a follow up.
[00:48:25] A doctor and um, you know, to be seen and get a breast exam and it's was what, a $40 copay and I have really good health insurance. Right. And I just started to feel like, is this for the copays? I mean, what are they doing? Finally said to my doctor, Why do I have these appointments? Mm-hmm. . Like this, Is it important to check up every three months post lumpectomy?
[00:48:48] Yeah. Right. And my tumor, like yours was only found through a scan. Mm-hmm. , it wasn't found through an exam. You know what, what is the point? And my husband said, There's a cost to you having to do these visits. Mm-hmm. , because it was like a revisiting of everything that I felt failed me, the whole human side failing while I was getting treatment.
[00:49:13] Um, and so I, I was able to cut them back and now I'm at five years and I'm clear. Yay. Monica. Congratulations. Thank you. So I don't have to keep doing them, but a friend who was diagnosed about six months before me didn't have any kind of follow up, like that same healthcare system, you know, So I'm like, was it just because my insurance would cover them and that I.
[00:49:37] You know that's, It's crazy just that there are, the standards are based on what will your insurance company pay for. It's ridiculous. Yeah, it is. And then because of somebody else's greed, you are then retraumatized over and over again to keep going to these appointments. So it's costing you money and it's costing your soul right.
[00:50:02] Each time that you show up. Right. You know, peace of mind. And everything. Yeah, just That's crappy. Sorry. It is, it is. Crap. Crapp. But you're five years, so, So now, Yes. So now what? You're just back to the annual mammogram thing again? Yes. Okay. Yeah. Um, yeah, and I, I, I really hoped when I got the news, it's clear and then I would just feel like, whew.
[00:50:31] Okay, Cancer, we're done. Um, I don't feel that way. I am starting to feel more relaxed, but it took a while so people are listening, you know, it's hard, it's hard to get beyond that fear and I'm, I'm not sure you ever get totally beyond it. Um, Well, you just felt like there was another shoe that was gonna drop kind of thing.
[00:50:56] Yeah. Or just, Yeah, just kind of the waiting. Mm-hmm. , you know, um, So, you know, just be easy on yourselves. Yeah. I would like to say where wherever you are in this, the status of breast cancer, just be easy on yourself. It's hard. Or any mental health trauma or any physical health trauma. You know, I think that should be our mantra.
[00:51:23] Always self-compassionate and be easy on ourselves. Yes. Say to yourself what you would say to your most treasured love, your most treasured best friend that you would give that person you need to give to yourself. Yeah. That is such great advice. It really is. Yeah, it really is. It only took 30 years of therapy to get there,
[00:51:49] That's okay. Um, okay. The last one of these seven quick questions, which turned out not to be quick at all. That's okay. Is, um, what TV shows are you binging right now? It's totally taking a left turn, but Yeah. No, that's okay. I'm not binging anything right now except, Well, uh, we did just binge, uh, This is gonna make me sound, well, my kids tease me all the time.
[00:52:14] This, uh, Icelandic, Oh, there you go. Noir. That was called Trapped. Now it's on Netflix and I called, it's called Ntra. Okay. We just binge watched the third season, but, um, I think I binge so many things during Covid. Yeah. That I've lost my taste for it. Mm-hmm. a little bit. Um, but you know, maybe something good will come along, but it was fun to watch our.
[00:52:41] Nordic war, but our, our kids tease us. They're like, What is that on Iceland tv? ? Nice niceness. They're like, Oh mom, we knew you would like this movie. It has subtitle, . You're not watching a movie. You're reading a movie. Exactly. Oh, funny. See, I like to, I like. to do other things while I'm watching. So reading subtitles doesn't work for me cuz I, I'd like to hear it so that I can do other stuff, but, Well, that NC for us.
[00:53:15] We like subtitles cuz our dog watches with us and she has this pig that she squeezes that makes this really loud oinking noise. Oh, so you need the subtitles so you, The pig doesn't obliterate the dog. We can have the subtitles and she can play with her pig and we're, we're all satisfied. I love that. Um, What kind of dog is she?
[00:53:36] She's a shepherd mix. She's a, she's a rescue dog. She's a mutt, but she's so are we so, so sweet. She's like a cat almost. She's so loving. Wow. Yeah. Wow. That's awesome. Well, thank you so much, Theresa. This was healing in so many ways. Aw, yay. What I did there. . Yes. I love it. And and I just wanna say before we end, Yeah, good luck to you.
[00:54:03] Thank you. You will get through this. There will be hard times. Um, but I'm, I'm glad you're in a health system that's looking out for you. That's wonderful. Yeah. Yeah. It used to be something that I thought was just ridiculous, you know, like the overlay of like the, the big healthcare management umbrella.
[00:54:23] And it really bothered me that one by one, all of my doctors were going that direction instead of being their. Practices, they were going underneath the umbrellas of these management companies. And I guess it's really the only way they can make money nowadays with the insurance companies the way they are.
[00:54:38] I, I don't know the reason really. Um, if that's not it, then I'm completely wrong. But, um, I, I do find as a patient, It turned out that a lot of my doctors are now under the Northwell Health umbrella, and I like the fact that on my Northwell Health patient portal, all of my doctors can see all of my diagnoses and all of my paperwork and all of the blood work, and all of the imaging and all of the results of everything.
[00:55:09] And then I don't have to reexplain the whole entire history of my entire life every single time. Right. and see that that's the way it should work. Yeah. Like I'm part of a big unified system, but I mean, in some ways what you're talking about happens and in other ways it's just a mess. Right. Um, but what you're talking Yes.
[00:55:29] That, that is the goal. That's helpful. Yes. Organization standardization. One record. Yep. Yeah, it's great. It's excellent. Well, thank you so much, Teresa. I I You welcome. Thanks for having me. So thrilled that, that you were willing to give me an hour of your time. Um, Yeah, And let me know how you're doing. I'm, I'm interested.
[00:55:51] I will. I will. Okay. Thank you. You're welcome. Okay.