Emotional Paths: Healing Mind & Spirit In Breast Cancer

Introduction and Guest Background 0:00

Hi there. It's Dr. Jenn. Welcome back to the Breast Cancer Breakthroughs Summit. You guys are in for a special treat because my next guest is a really special person and she has an amazing story. So with us today, we have Dr. Christina Hibbert. She is a clinical psychologist, bestselling author, speaker and thought leader in the areas of motherhood, women's mental health, postpartum parenting, grief loss and personal growth. And she's been on her own personal growth journey, one that I'm certain she took unintentionally, like all of us do.

And it has brought her new perspective. And I am thrilled and honored that she's willing to come here today and share her story and share her inspiration. So, Dr. Hibbert, welcome. Thank you so much. That was so kind. I appreciate it. I really have been so looking forward to our talk. So can you just start us off by briefly telling us about your background? I mean, what what made you go into this field and and how you kind of arrived at this place professionally? Yes, I actually, as you said, unintentionally ended up a clinical psychologist through my own personal growth experiences.

The first major one being my youngest sister, actually died of kidney cancer when she was eight. And I was 18 and I was in college and I was. Like, goodness. Yes, I know. It was it was really hard. And I, I hadn't been sure what I wanted to do for a major. I was originally going to be a fashion designer and then I realized, oh yeah, I don't know how to sew and I don't know how to draw. So that's not going to happen. But I really wanted to be a speaker and that wasn't a possible major. And then my sister died and I went through my own grief process and went to counseling for the first time and realized, you know, I feel like as an 18 year old, I knew something that other 18 year olds didn't yet know, most of them badly.

I felt like I was in a good position to help people. And so that kind of started my my interest in psychology. And then, you know, all of my life experiences going through postpartum depression with all my children's childbirth. And that led me to focus on postpartum depression and mental health. Also, I've also lost another sister who died in 2007 of an overdose of Tylenol and alcohol just after her husband had died of melanoma. So we had three kids and I was pregnant with our fourth, and suddenly we inherited our two nephews and we went from 3 to 6 children.

So talk about trauma. I've had a lot of trauma and suddenly I, you know, start learning about that and helping people with that. And of course, four years ago, July, I was diagnosed with breast cancer. And that led me to now four years, three months later. But who's counting of know really focusing on the trauma and the mental and emotional aspects of the journey of breast cancer. Because it's been tough. I mean, for me, I've had 14 surgeries. I you know, I did the chemo. I've had all kinds of lasting complications, chronic health issues.

I just got back from my second trip to Mayo Clinic in Rochester, Minnesota, because of lasting issues. And all of that, of course, impacts her mental and emotional well-being. So and I feel like it's the aspect that is least talked about and we're at least prepared for. So that's kind of where I am today with that. You know, all of my all my personal experiences pretty much have led me to where I am professionally. So can you start off by telling us, I know that you had a triple negative diagnosis for can you tell us a little bit about that time around when you were diagnosed, how you were diagnosed, and then what your treatment plan looked like?

Yes, of course. And it was ironic because I actually had made a goal that year to be the healthiest I had ever been. And I I've been an avid exerciser and pretty much ate healthy, but I had stepped everything up. So I was in a really healthy place physically. I was also in a really good place professionally. I had just created a whole two day program that I was teaching live and I was in the middle of writing my fourth book and ready to get that published. The Big One Mastery of Motherhood. The big one that I've been waiting to do.

And then it just I went in for a mammogram and it was a follow up mammogram because I had found a lump and I had had a biopsy about six well, about eight months before, really. And it was you know, it was nothing it was just dense breast tissue. Right. Was this in 2018? So that was a year before. This was about eight months before she was supposed to come back six months later.

Diagnosis and Initial Treatment 5:36

But I was really busy doing this event and life gets. In the way. Right. But I came as soon as I could, and it was a good thing I did because they had just hired a breast radiology specialist, which I didn't even know was a thing. So that's something that everybody should know is a thing, and you can ask for that. And my cancer was stage one triple negative when they found it, and I was. Able to have the same thing that was biopsied in 2018. No, that really was just, you know, just fat or just part of breast tissue.

Is it the same breast? Yes. So that was your call to action? Yes, it. Was. I mean, how do you say pay attention to me? Yes. And active and backing up my mother is a three time breast cancer survivor. So we had looked into genetic testing, too. And my mother had been tested twice. And both times what they told us was that it was inconclusive. So because of that, I asked myself and my sisters and my brother are doctors. Didn't ever do the testing at that point. So I was actually diagnosed with breast cancer, triple negative breast cancer, stage one.

And then I was tested for genetic testing. And two weeks later I got the test results back that what it really was was a variant of uncertain significance. Yeah. And again, I didn't know what that was, but I wish I would have known because I had the same variant that my mother had. And a week later then, you know, when I got the results, they actually reclassified it as part of the BRCA1 genetic mutation. So I do carry that as well. And yeah, I mean, I was it was like, bam, go, go, go. Because I had a double mastectomy a week to the day after I was diagnosed.

Wow. Because of my family history, because my doctor, my breast surgeon, she just knew that I. I had the same genetics as my mom and that she had a variant. And and it was stage one. We didn't want it to spread with triple negative that that's obviously not good. So and we thought I could avoid chemo, but it ended up being that I chose to do chemo because just that one chance that that little speck got into my bloodstream and it metastasized, I didn't want to take that chance with six had already lost a mother and a father and an aunt and uncle.

And, you know, I think a lot of them well, they were all very scared for me. So. So what did you have for chemotherapy? So I ended up doing more of the what they would do for metastatic breast cancer, which was taxitier and carboplatin. And I did four rounds and I did quilt capping. So I did I was able to save my hair. Can you tell people about that experience? Because I don't know that everyone knows. Yeah, no. That's another thing that I didn't know about. There's so many things I wish I had learned about, but some things I wish I knew earlier.

Yeah, whole capping. So basically where these freezing caps that you keep, negative temperatures, mine was -25 to 30 degrees in dry ice and you switch out the caps every 20 to 30 minutes, depending on your routine and your hair and all of that and your your chemo. And you start an hour before chemo. You do it all through chemo and they do it for me. It was for 4 to 4 and a half hours after. Yeah. And yeah, it's like a major brain freeze now. But basically the idea is to try to freeze the scalp while you're having the biggest infusion of the chemo drug.

Yeah. So it doesn't get to those follicles as much. It's it's to divert blood supply to the scalp so that it chemotherapy is not a selective treatment. So what happens is that it's going to go to any rapidly growing cells, any rapidly dividing cells. And our hair follicles happen to be rapidly dividing, just like all the cells that line our gut and so that's why people get nauseated and diarrhea and have an upset stomach and all of that with chemotherapy. And so cold copy has been around for a long time.

But still, I don't I don't know why it hasn't universally caught on now. It's not successful with everything. And if you have a myosin based chemotherapy, it's not as successful because I think that that is even more toxic to the hair follicles. But most people who do cold capping and you have to do it from the very start. So if you even have one cycle of chemotherapy without it, it won't work. So you have to do it from the very start, but that people maintain probably about 75% of their hair. Did you find that to be true for you?

Yeah, I think I say I lost probably 20% and I have a lot of hair and it's really thick and that helps but mostly around here where hairline harder to get the seal in here, right. Yeah. Yeah. But it was just a it was a look. It was a gift. You know, I didn't look sick. I didn't go out. And everybody knew that I was on chemo. I didn't have to lose my hair. It was just an extra thing that and for my kids, honestly, I wasn't even sure I was going to do it because I wasn't sure it would work because like you say, there's I don't know why it's not more popular.

I do know that most insurances won't cover it and it's expensive. You have to rent the equipment and, you know, and it's intense and it's it's a lot of work. It hasn't happened for a long time, too. But my kids really were the ones who were like, I don't want you to go bald. And I'd had a friend who had died the year before cancer and to my daughter said to me, to me, cancer is you. You do chemotherapy, you get sick, you go bald, you die. And so even for my kids, it was a big gift just to not have to do that.

And you can understand why they feel that way, because those are the images that are the most prevalent, right? Yeah. I do want to mention I don't know if it's still true, but there used to be an organization called the Rapunzel Project and they will if you send them your tax return. And it's not a need based qualification, but if you send them your tax return, I believe that they will pay for or highly, highly subsidize your cold caps. So everyone. Through. Yeah, everyone who is embarking on chemotherapy and wishes to preserve their hair.

And I think it's worth a try no matter what. Yeah. And you can speak to how onerous the process is, but if if money is your barrier, the Rapunzel project will help significantly with that. Yeah, that's right. How hard was it to wear the caps to? Did you have to bring your own dry ice with you. Yes. And I had to drive 2 hours to chemo every time. So I mean, it was it was an it was intense, I'll say. But for me, it was worth it. I mean, it wasn't the end of the world. You can't have like a massive, like I said, literally, like brain freeze or a headache.

And my doctor would give me out of an and I'd take a leave. And, you know, you just kind of feel, you know, that way for a while. But I have to say one thing that it did help with with chemo was you're so busy changing out the caps. And I was able to have, you know, people there helping.

Cold Capping and Support System 13:12

They were the ones that were my captors so my friends could have something to do or my husband could have something to do. And and it did I never was sitting in chemo thinking about it. I was too busy to even think about what was happening. So yeah, I think, you know, in that sense it kind of helped me and protected me in that way emotionally, I think. Yeah, that's good, that's good. And I'm glad to hear. Yeah, it does give everyone around you purpose and not something that we should talk about because part of the difficulty with a cancer journey is not only what you're going through, but how other people are experiencing it.

And some people are wonderful and other people are so uncomfortable that they they kind of get lost in the process and they don't know what they are to too. And they don't know what to say to you. So can you talk about how how was the experience for the people around you and what what did it tell you about your relationships? This is such a good question and I'm so glad you asked this because like you said, this is so important and we all feel this. You feel the sort of the I call it the lifting of friendships, you know, the ones that are going to be there for you, kind of settle out to the bottom and the other ones kind of get caught in the trap and they they never show up.

And it seems like for me, I felt and I heard this from a lot of other women who've been through it, that sometimes it's the ones you least expect that are going to be there for you and the ones that you really thought would be there for you can't handle it or whatever it is. And they they aren't. So and I have to say, I the day I was diagnosed, I had already been pretty active on social media. And like I said, I published a couple of books and things like that. So I had made a decision and I thought a lot about it and I wondered, should I share this publicly or not?

And I decided to be public and I was going to share everything. And I did. I have shared everything from MC Ryan to, you know, the pain of it, to the successes, whatever it might be. And so, yeah, I mean, I felt like it was like it was crazy at first because every but I feel like so many people were there for me at the beginning when I was having my double mastectomy, when I was going through chemo. And again, some of the people that I thought would be there really couldn't and weren't. And even a couple of my kids, like one of my sons who was my they've been adopted now, but who was my sister's son.

He flat out told me, he said, it's too hard for me. I just can't be around you, you know. And I had to respect that. But because I mean, the thought of facing death again for someone that had to been so terrifying for. My kids, it was it was just so hard. And for me, that's a whole other aspect of just my own guilt of not being able to be there for them. Who is seated in the way that I wanted to. But for me, I mean, people would come visit. I got cards, I got people sent me things from around the world, gifts and all kinds of things. It was insane.

And I thought, why, why, why? Why do we do this for for cancer treatment, but not for like if I had done this already, I have a blog and website and I had gone on a few years earlier and said, you know, I'm the face of depression and no one sent me a card, no one gave me a gift. No one showed up to visit, you know, but but it's you know, depression can be just as deadly knowing that my sister, her death was ruled a suicide. And another friend of mine lost her life to suicide as well, dropped her daughter at my house and drove to the Grand Canyon and jumped.

And so I again, more trauma. But the the right after chemo was done, though, it was like crickets. That's what I felt like. I felt like I had been on this conveyor belt of treatment through all the treatment, just doing what the doctor said. And that for me was, you know, I lost my right implant. I lost my left implant. I had gotten infections and like I said, extra surgeries, things that I wasn't expecting. But once the chemo was done, it's like everybody kind of just just they think you're done.

And I started saying, hey, guess what? When you're when they tell you you're done, you're not done. And and I felt like I was left in the middle of the Sahara Desert, dumped off this conveyor belt. And I'm looking around going, Where did everybody go? What just happened? Yeah. And I what do I do is pile of emotion there. And then I'm left. With I call that the quiet after the storm. And it's really terrifying, right? Because you're so busy before then you're first you're busy with getting the diagnosis and then you're busy with collecting information and then you're busy with appointments and then you're busy treatments.

And all of a sudden the busyness goes away and it's so quiet and you're kind of left on your own thinking, now what? Yeah. I love that person. That's perfect. And so. So what did you do in your now? What? I mean, you you stayed pretty busy because you had a ton of surgeries. I don't think I've ever I was a surgeon for 20 years. I don't think I know anyone with your story. So tell me tell me what went wrong there. So like I said, I had gotten staph infections first in my right implant. Did you have.

Bilateral mastectomy with immediate implant reconstruction? No, with. Expanders. Okay. Just meanders. So I did that for two months and when I was ready to do the exchange surgery, I opted to do a complete, total hysterectomy at the same time because I'd had all my kids and also I was I had the BRCA1 genetic mutation. So I thought, okay, I'm going to have these two surgeries at the same time. I had my double mastectomy. I have these two, three surgeries done. You know, I'm not surgery, but my body doesn't like things in me.

Now I know that. And so rejected the first implant once the implants were exchanged,

Surgery Complications and Chronic Illness 19:36

later rejected the second implant. So after coming out of chemo, I was not only still very sick, in fact I started feeling better and then I started feeling worse. And it turned out I ended up with kidney stones, pretty huge kidney stones from the carboplatin mostly. And so ended up with surgery for that to get rid of those and then when this was all during COVID periods, all starting and then when I was able to I went back in try the reconstruction again, we did expanders again and I got an infection and we were able to somehow salvage the expander.

My doctor was able to exchange it for a new expander, use antibiotic beads and salvage it. And then everything was fine. Got to the exchange surgery, did that, got another infection. But we were able to save it, save the implant without it coming out. But in my mind, at that point, I was like, Wait a minute, why is my body just hating everything I put in me? And of course, my surgeon saying this like there's there's only a 30% chance that this would happen. Well, there's only a 5% chance this would happen.

Well, this is very rare that this would happen. And, you know, he hadn't ever had anyone who had had these reactions like I had. So after that, I had my implants, I had my reconstruction. I started feeling a little bit better for maybe a month. And then I started getting worse, worse, worse. And I just knew it. I had researched it. I knew I had breast implant illness and I had to go find the doctor who would believe me and who would start over. I wanted to start over and do a deep flap and get rid of the implants and do I had been flat, I had had one breast just for me, it just I just didn't feel like myself, especially as a speaker and everything.

And being in public, I just just wanted to look and feel like me. So we started over with a deep flap reconstruction. So that was that went well. But the very next day I had a hematoma. I had to go back in for surgery, fix that. A week later, I ended up in the E.R. with a strangulated hernia. So probably something a stitch pulled or something got nicked, and it ended up being a four inch tear, two feet of intestines shooting through this and clamping down and and so they rushed me into emergency surgery.

I wake up and they have put hernia mesh in me. This like literally a square this big. Oh, I'm. Well aware. I was I was a surgeon for a good long time. Yes, you're right. But I didn't know they were going to do that. And I had just gotten my implants out and for making me sick. And I thought and so I asked my surgeon, is this safe? You know, I just got implants. I don't think I want this in me. And he said, no, in five weeks, it'll absorb into your body. It'll be fine. Well, fast forward two years till almost exactly a year ago, I ended up getting the mesh out because again, I was having all the symptoms I had with breast implant illness.

I had gastroparesis, so my stomach was paralyzed. They thought my colon was paralyzed. I was starting to get fatty liver, high cholesterol, I mean, all kinds of crazy things. And so I had that removed. And when he went in to remove it, it was completely intact. It had never dissolved or absorbed or anything. It looked like it came out of the box so clear that my body was rejecting it. And at the same time he repaired my abdominal wall, which had also been severely damaged with the hernia. So the right side of my abdominal wall is kind of like worn away in the rectus abdominals.

He had to stitch all back together and he actually used skin from my back. So he took a big piece of skin from my back and used the skin to repair the hernias. There were three hernias, three new hernias. And and then he tried to kind of tighten the right side using the skin from my back. So I don't have any devices on me. And that's all great. But unfortunately this all left me with chronic illness with we now know. What I now know is that I have muscle activation syndrome and that is why my body keeps reacting, which is for anyone who doesn't know.

Basically, you kind of are allergic to anything in your body and to external things too, and kind of get these allergic reaction type taste sensations of your crimes. Unfortunately, yes. That's what's happening at you. Too, because all the surgeries and ehlers-danlos, which I've probably had for a while, but that's probably why all of my tissue, which is for anyone who does no connective tissue disorder. So that's probably why I've had so many hernias. I have a hiatal hernia right now, so I'm just trying to learn to live with these illnesses and chronic constipation as a result.

I mean, severe enough to send me to Mayo Clinic in Minnesota. I live in Arizona. There is one here, but they don't take my insurance. It's really stupid. But anyway, it has been a long haul, let's say. And I look great. I look, I look great. I look healthy right now. You look. Great. You do look great. But I well, most of the time and yes, it's all from breast. Breast cancer triggered it all, set it all off, you know. So yeah. So in your experience, if this was happening to someone else, you would go back and you would say, where are your triggers?

Like what started all of this for you? So have you been able to go back and do that kind of work? Yeah, and think about that. Yes, I was. So I, I started seeing a therapist right away. I knew that I would need it through breast cancer, even when I thought I was only going to be 3 to 6 months and I'd be done. And then you move on because you don't you have no clue that this is going to change you forever. And this is what I wish that they could talk to us about. This is going to change you forever.

It's not necessarily an awful thing. You're going to be different. But, you know, prepare us for this trauma that's happening to our body. Even just hearing the words you have, cancer is trauma. Every surgery is trauma. Chemo is trauma and it's happening. It's actual genic trauma. It's it's medical trauma happening to the body. Not to mention how doctors might or might not respond or believe us or, you know, how they care for us or adults. Sometimes, you know, that can be traumatic too. So for me, I was in therapy the whole time and I have been in I'm still in therapy, but I didn't start the trauma work until after all the first 13 surgeries.

Those all happened in the first 17 months. So after all of that is when I really felt like I was totally alone and everybody was disappeared. And I had this mountain of trauma, especially because of all the surgeries. I mean, it was just a lot and a lot of emergency stop. I mean, the strangulated hernia, he was like not soft. I mean, you know, it's just yeah, yeah, yeah. Scary. Yeah. So that is a true surgical emergency. Yeah, exactly. And I started I mean, I was working with a trauma therapist anyway, we started doing some EMDR.

So eye movement desensitization, reprocessing. For those who don't know, it's it's a very effective way to to heal trauma. I was at that time diagnosed with PTSD. And no wonder and been working on that kind of since because I kept feeling sick or having more problems. It's kind of continued on. And I started doing ketamine assisted therapy about two years ago. I did my first round. So usually when you do ketamine, it's a so ketamine is a psychedelic for those who don't know. And this is kind of the wave of the future for trauma work and some other kinds of issues that are, you know, not responding to other treatments.

Let's say, like your depression, suicidality, that kind of thing. I wasn't sure about it. I was I thought, you know, I don't I've never done a drug in my life. I don't drink alcohol even like for me that this was going to be a crazy experience, but it's just so effective. So it is a psychedelic and you take that for me. I've done it in an office, psychiatrist's office under Ivy. So then, you know, you have a nurse, they're monitoring your blood pressure so that they're watching you and everything.

And then I do therapy with my therapist at the same time. Yeah, some people don't do it at the same time, but you need to do the processing and integrating what you learned through your experience with them. At least they they say within 72 hours at least. But now that has been so powerful. And of course, when you get in there, to me it feels like a truth serum because it's like whatever you most needed. Think it is. A truth serum? Actually. Yes, I think it is. Right, yeah. So the most the biggest traumas come up to the surface.

And I went in to deal with breast cancer, but I started dealing with my sister's death and my, my my second sister that died, the suicide and the anger and my friend's suicide. And so I've gone back. I've done four rounds now, usually at six sessions per round. So it's not like you're doing it forever. But after I had surgery again last year, of course, all this trauma came back up, so I did it again. So it's been very helpful, very, very powerful, healing it. It helps you just get to the core so fast, faster than any other method I've ever known.

And for me, it just has worked better than any other trauma therapy that I've tried. Not that I don't still do some of the others I do. We still do some EMDR and things like that, but it's helped a lot and I just kind of go back when I need to because when you've had trauma and you complex trauma is what I have had meaning. And I would say most breast cancer survivors have had complex trauma issues or more than one thing happened right there. There's actually a lot of data on that, really. So when you when you when you take the population of women that present with early disease like you did.

Yeah, about 30% of them will have complex trauma in their background. But when you start to get into the people that present with metastatic disease, with later disease, with with more significant disease burden, now you're talking about 80% of them having complex trauma in their background. So these are not insignificant numbers. Right. And I don't I don't think that most of us walk around with an awareness of the fact that our body is keeping score, the fact that we are seemingly okay in this minute.

But reliving a past trauma again and again and again enough so that we are actually causing a chemical shift in our body. And cancer is a normal response to an abnormal environment. So it is the effect of that chemical shift that happens as a result of reliving that trauma over and over and over again, even though you're not aware of it, that you're not aware of it, of it's of it's ever present.

Trauma Therapy and Ketamine Treatment 31:00

And it's a. Fact. Yes. Thank you for saying that. And I'd love to see that research because, I mean, just with PTSD, 82.5% of breast cancer survivors end up with symptoms of PTSD. And just for free. All of you listening just to give you some kind of perspective, 20% of the general population who have a traumatic event end up with PTSD. So that's one in five versus four out of five. So and I because I talk about this a lot and I really and I did a big kind of TED talks type speech with an organization recently about trauma and PTSD and breast cancer survivors.

I hear from so many women and I do a support group, a monthly emotional support group online that they say things like it's been 12 years, 20 years, five years, whatever. And I never even no one's ever said the word trauma to me. No one's ever explained that I've been traumatized. You know? And I know that feeling. When my sister died, I remember being in therapy and him saying trauma. And I said, Wait a minute, I've been traumatized. You know, that's emotional trauma and mental trauma. And just to kind of explain complex trauma, it is when you have just more than one kind of traumatic event and it kind of builds up.

And a lot of times it starts in childhood. And I do have some developmental trauma, not severe, but a little bit in my past as well. So a lot of people that do have complex trauma, it's trauma from your whole life. And, you know, that's different than someone who, let's say, witnesses a horrific event and has PTSD as a result and goes in for therapy for that one event. It's for me, it was like, where do we even start? You know, like take your pick of all these things that have happened in my life, including all of the stuff that happened during breast cancer, but it can be healed.

It's just it's just a very complex and it process and it takes time and so much work. You really have to commit to this kind of work when you when you want to do it, when you're ready, because it's hard and it does make you feel kind of worse for a little bit because things are coming up and you do have because of things like this. But yeah, but in time it can really it really can heal you, not just physically, which is so important, but mentally and emotionally, spiritually and your relationship socially as well to that is that's all part of healing.

Yeah, for sure. And you know what you mentioned there is a lot of times sitting in that discomfort. Yeah. And I think the reason why therapy is like ketamine or so effective is because when we stay in that trauma loop, right, when we relive that over and over and over again with the outcome that has become imprinted in us. So to is that connection, that connection is imprinted. It's hardwired into our brain. And the thing about ketamine and I don't think that ketamine is going to be the definitive drug, I think that my suspicion is that psilocybin will be the definitive drugs for this type of therapy.

And it being very successfully trialed at Hopkins and other institutions, particularly in the metastatic cancer population, metastatic breast cancer in particular, because what it allows for is a rewiring of your circuitry and not that the trauma didn't happen, but that we can give it a different ending, maybe a safe ending. But I will say that I think that there are no four words that are more traumatic to a woman than you have breast cancer. I agree. And like you said, it forever changes you. Does.

So can you explain what the experience is like during your ketamine journey? Because I think people are curious as to what what is involved. Yeah, I get this question a lot. Like I said, it's it's hard to explain. Let me just say, the first time I did it, I was like, well, I get why people do drugs. You know, that that's all pretty good, you know? But at the same time, it's a truth serum and the thing your ghosts are going to resurface. And so you are. The whole point of it is dissociate action.

And we think we hear that word and we think, oh, that's like psychotic. People are dissociated. But the point is, the drug, the psilocybin, the ketamine, the mushrooms, whatever it is, whatever kind of drug it is, they're using there. And they are they're studying so many of them right now. It's supposed to make you kind of dissociate. So meaning that you're not kind of like stuck in that thinking brain like you were just talking about. So it does give us the opportunity to completely be rewired.

And for me, I'm an overthinker, you know, like, you know, try to achieve person. It's so helpful for me to not be analyzing things. That's not how it works. Traditional therapy, a lot of it is kind of, okay, let's try to think about this or feel this. This is just whatever comes, comes. And so you do they call it, they kind of describe it as you're going on a journey and you do travel in a sense of sometimes you're seeing you're going to a place like, Oh, I feel like I'm in Hawaii or I feel like I'm on an iceberg.

I mean, talk about the loneliness for me, I feel like that has been one of the biggest traumas to me is I've never felt so lonely as I have since I finished breast cancer treatment, active treatment. And and so I would see images of being, you know, I'm seeing an iceberg. I'm in a snowy mountain. I'm in a train and it won't stop. And it's going right through the mountain. You know, just these visual descriptions that when you go back and look at them, well, of course, that's how I feel. I feel like an iceberg.

I feel like I'm on a train that won't stop. And it's just I can't I'm not even climbing the mountains like it's just plowing through me. And that's breast cancer. And then sometimes it will be people that I've lost seeing or reliving it with my friend who died by jumping off the Grand Canyon. I mean, I had a very intense experience where I was like telling my about it, bawling hysterically every time I'm bawling hysterically. It's a very big emotional release. I will say that for me, it's cathartic.

It's so cathartic. But I was literally describing what happened to her and exactly what happened. We know now, and I was imagining that I was her doing it. And so, I mean, it can be very intense. And that's what I mean by you have to be ready for it. You have to be ready to be willing to look at things you don't want to look at because they will come out. But when they come up, like you said, we have that opportunity to change it, to change the outcome, to have the cathartic, cathartic release, and to be able to view it in a different way because we have processed it at such a deep and powerful level.

You can't go that deep that fast. I don't feel like without some kind of help to get there. And that's kind of what the drug does. Yeah. So it's a facilitator. That's what I feel like. Yeah, yeah, yeah. So what have you learned? What was your message? What what are you supposed to take away from this? Because for most of us, the people that that do really well afterwards are the ones that can see it as a message. See it as an opportunity, see it as a chance to do it better afterwards than we were doing it before.

And this is not to blame anyone or to shame anyone, because so much of what happens to us before, so much of what brings us to the table, certainly in your case, this wasn't anything of your wrongdoing. You were exposed, as many of us are unintentionally exposed, to these things that have catastrophic effects on our health. So what were you able to uncover for you and what can you what how can you use that to move forward in a positive direction? I, I completely agree that for me, I do feel like everything I've been through and my first book is called This Is How We Grow and the The quote on the front says, When life throws you in the mud, plant yourself and grow.

So I went into this experience thinking that and that's how I've always felt and kind of thought about life. Not that I haven't felt the trauma and the pain too, I do, but I've always had that kind of in the background. But I will say that the past, especially the past couple of years, have been so intense with the trauma and the trauma work. And then, you know, things keep happening and going wrong and even kind of I keep thinking, am I to the end? Maybe I'm to the end, but but now I'm learning to live with chronic illness.

Healing, Identity, and Advocacy 40:36

So I want everybody listening to know you are not alone. If you are feeling overwhelmed, if you're feeling angry, if you're feeling sad, if you're feeling scared, if you're feeling traumatized, whatever you're feeling that is perf like you said. I've said that so many times, perfectly normal response to a very abnormal situation. And at the same time we can heal. So I always feel like there's a part of me that still kind of like dealing. And then there's this part of me that's healing. And for me, I know that that this is this experience of breast cancer.

For me, I feel called to make change in how we deal with the mental, emotional and trauma aspects of breast cancer. To speak about it, to talk about it, to do a support group for women so that they have a place if they don't have somewhere to talk about the emotions of it, because we do get this message. I mean, going back to what we talked about, beginning with people not understanding, you know, just be positive, just, you know, be grateful you're alive and I'll be fine. And I'm so tired of that.

It's just lipstick. I mean. It's not realistic, right? That that's what we call toxic positivity, right? Positivity. Yes. And I'm over it. And I think. No, feel what you feel. Acknowledge it, look at it, take it somewhere for help and then try to do the work because you're right. Like if we don't for me, if we don't do the work, the healing work, the mental, emotional, spiritual, social healing work, in addition to the physical healing work, we aren't going to ever move forward in life. We're going to be stuck here because that's what trauma is.

It is it's like you're stuck in that moment. PTSD is you're stuck in that moment. And it's it's bringing all these symptoms up all the time. And you can't get out of the loop, right? Absolutely. You know, I'm considering right now going to a three week stay there in Minnesota rehab program because I need to learn how to get out of that loop when. It comes to my chronic symptoms and how to deal with them physically, mentally, emotionally and all the ways. So I just feel like for me that's what I've gotten from it is I'm glad that I can.

I almost just said it without pausing, but I am glad that I've had a hard experience in this one way I wouldn't wish for it. I never wanted it. I wouldn't. But in this in this way, I have really experienced the gamut of what can happen and go wrong. I was stage one cancer and everybody hears that and they think, oh, that's easy. Oh, yeah, you're fine. Yeah. You got. This? Yes, you got it. Yeah. My gosh. Yes. Yeah. But I've had to learn how to really feel what I feel. Let it be okay. Be gentle with myself.

Take care of myself and put my my needs up there. I've always used to say, you know, we've got eight people in our family and I'm number eight on the list, you know. Well, not anymore. I'm number one because, you know, I need to be because I can't help the other seven if I'm not number one. And I'm no I'm no good to anybody. If I'm not good to myself. So I need to be good to myself. And I'm doing that. And I really learned that self-care and I'm still trying to figure out the identity piece of it.

And I will say that's what I was talking about. Like you're changed forever. And I know a lot of you out there might be feeling like you're lost or you just don't recognize yourself. You don't feel like yourself. I mean, there's so many ways we can put that. And I, I so understand that I'm, I'm such a doer. And I with POTS, I mean, and mast cell, I, I get up and I just feel like I'm going to pass out half the time. I can't even exercise the way I used to. So I'm, I'm having to relearn that or learn a new way.

But I think it's it's okay because we become somebody new and we give ourselves hopefully we give ourselves time and space to allow that process to to ask that question of who am I now, who am I now and what? And be able to have room for all of the answer. Well, here's all the things I about who I am now or hate about my life right now. But these are all the blessings, too, and these are all the really great things. Like I've become so much closer with my husband and my children and and I really I really do value life in such a bigger and broader way.

And I can serve and help so many people. And I'm really passionate about this, like trying to get out there and literally go and teach providers who deal with the physical side of cancer care, how to just incorporate some more questions about and emotional care and, and where to refer people and to just to make a change in that way. I really feel like I can. And I'm working on a book about this, of course. So, you know, I feel like my future I'm going to be able to help a lot of people because of what I've been through.

And to continue to ask, who am I now? Because that will change. And who you are today is not going to be who you are in six months and six months from then and six months from then. And so to always be asking that question, knowing that the answer is going to change, yes. Yeah. And that's supposed to happen. It's okay. That's a thing. You look at things too, because I mean, who we are now, it's we're hope. There are a lot of ways we're just so much stronger and better and yeah. Grown now. So if you had a magic wand and you could change how we approach the breast cancer patient and how we support the breast cancer patient, what would you change?

I would change this dialog about the trauma and the mental emotional aspects, and I would start from day one. Having that discussion of this is a big experience. A lot of people feel like it's traumatic. It can be very emotionally and mentally difficult. I'm here to listen or hear. Here's somebody who's here to listen for you. Here's this group that you can talk to and to keep that dialog going throughout. I just feel like if we just talked about that more and even talking about things like, you know, you probably are going to hit a point where you feel lonely, where you feel like people have disappeared.

I just feel like when we prepare people, we're not scaring them. We're not we're not making it harder for them. We're just preparing them. And if it doesn't happen, it doesn't happen. Great. That's a great experience. But otherwise, then you just don't feel like there's something wrong with you. Because I know I felt like something was wrong with me because no one's mentioned this. And now I feel like I'm all alone. I have all this trauma. It must just be me. Well, no. If we just normalize it by talking about it throughout the process.

I just think it'd be so much easier for us to get through and to know we're not alone and to not feel that extreme loneliness, and to be able to know where to turn and know who to talk to and know what we've been through and get the help we need so much sooner. We I just that's what I feel like. I wish I could wave a wand and every woman could get that experience. I agree with you. And it's not going to happen in the context of seeing your medical or seeing your surgeon, because, you know, they're not meant for that.

Right. But I do think that the same way that your medical oncologist didn't clue you into the cold, perhaps like there are huge pieces missing from the system and they need to be added in. So in addition to seeing your served in and senior radiation oncologist and your medical oncologist, we need to bring nutrition into it. We need to bring therapy into it. We need to offer people very well-rounded package so that you can get the most out of therapy, but you can actually start to heal while you're there.

Yes. Yes. Because we need we need to start healing the day these diagnoses happen. We can't wait until afterwards. And it can't be something that is seen as an extra outside of the system. We have to build it and we have to help these people heal and heal properly and heal early because the more damage that happens, the harder it is to heal as yes. And when you have it built in again, it normalizes it and it makes it part of the process that this is part of the wound. It's also part of the healing that needs to happen.

I love that. It was so wonderful to have you here today. I get to try. And join our talk. I hope this is the first of many talks between us and the future. I wish you so much luck and healing on your journey. I have. Had the great privilege. Of seeing many, many, many people heal from chronic illness. I know that healing happens and I see miracles every day. And I pray for one for you. Thank you all. That means so much. But I want so welcome. It's Dr. Jenn. Bye for now.