Breast Cancer Survivor Lost, Scared, and Alone - Inspired to Form "Young Women's Breast Cancer Awareness Foundation"

"Having cancer is like being thrown out of a plane into Russia and not speaking Russian."

Jen Helm, a cancer survivor, was diagnosed with breast cancer at 36.  Her kids at the time were 5, 3, and 15 months old. Can you imagine what was going through her head?

Her plastic surgeon coined her as "high maintenance" for asking hundreds of questions. After treatment, they say "see you in 3 months." That feels like an eternity. 

Jen felt lost, alone, overwhelmed, and living in fear. She made it her mission to  help women in their 20s who are diagnosed with cancer at 23, 24, 25 years old - some of them right off the bat with metastatic disease: all their dreams, their career, & their family hopes go off the rails -  it's a lot.

Jill sits down with Jen, on this episode of the Everything Cancer Podcast, to chat about Jen's shruggles, eye-opening realities of overcoming cancer for women, how to listen and pay attention to your body, and how to find support groups designed to help you.

It's extremely lonely to have cancer; you don't have to go through it alone.

Young Women’s Breast Cancer Awareness Foundation https://ywbcaf.org/

*Note: Please excuse the occasional echo in this episode - it is an early recording and we upgraded the equipment soon after :)

Transcript

Jill: Welcome to Everything Cancer. This show is designed for survivors and those who love them, and to offer providers fresh perspectives and insight. Our spectrum of guests are inspiring survivors who share their journey, challenges, and how they thrive. Providers who give us insight into strategies for treatment, symptom management, and thriving through all stages of the cancer journey. Cancer Care Team members will give us behind the scenes insight into cancer care, because if you understand it better, you can be a more effective self-advocate. Leaders from cancer support organizations will share their stories and the resources their organizations provide. 

We'll talk about rekindling intimacy when cancer has changed your world, and we'll break down effective self-advocacy strategies into easy to follow steps. We'll talk about everything cancer. Thank you for listening to the Everything Cancer Podcast. 

We greatly appreciate you being part of the Everything Cancer community. The information on this podcast is not intended to be used for medical advice. For any healthcare concerns you have, please consult with your Health Care team. The staff at Everything Cancer Podcast will not be answering individual health questions. 

Thank you, and thank you for being here. Welcome to Everything Cancer, the extra-large suitcase of the cancer journey. I am thrilled to have here with us Jen Kamm, who is the Executive Director of the Young Women's Breast Cancer Awareness Foundation and a cancer survivor herself. She has an amazing story. I welcome everybody who's listening on board, and thank you for being here. Jen, take it away. 

Jen Kehm: Well, thank you, Jill. It's an honor to be on your podcast. I'm very excited to be able to share my story and also just what I've learned along the 20 years that I've been a patient advocate. Just to start to give you my why, I was diagnosed in the year 2000 with breast cancer, and I was 36 years old. So my children were 5, 3, and 15 months old. 

Oh my gosh, wow. Yeah, so it was, you know, we really didn't have any... We had no family history of breast cancer or ovarian cancer. But the issue that sort of made my experience unique is my mom was the Director of Speech and Hearing at a hospital and had to have a chest X-ray once a year. And her chest X-ray came back that she had... They thought she had lung cancer. 

And you know, my mother was... She was argumentative. She didn't think she had lung cancer, but I convinced her to have the biopsy. When the biopsy came back, they said that she had lung cancer. They had removed a portion of her lung and all of her lymph nodes. And she had a tremendous challenge recovering from that because she had really hard time with almost all pain medications. But the next day, the physician came in and said that it was her lucky day, that it wasn't cancer. 

And I thought to myself, her lung is in the trash can. I said, I don't know whether to hug you or hit you. I didn't know how to react to that. And that sort of... And so two years later, I was diagnosed with breast cancer. Thankfully, my mother was fine and lived on to many years later. But when I was diagnosed, I then took... 

I almost didn't have a lot of faith in the medical community, to be honest with you. So I really challenged people when people... I wanted things tested twice. So I ended up having a lumpectomy and then I needed to go further because there were not clear margins. So I ended up having a mastectomy. But then I did take my... I actually picked up my slides from the hospital and then drove them to the other hospital in town to get a sort of a second opinion on my tissue. And it was conflicting. The ER-PR at the one hospital was both negative and then it was PR positive, ER negative at the other hospital. That's a huge difference. 

That's a huge difference. Well, the odd thing is I asked the oncologist, I said, you know, what do we do now? And he responded, well, let's test it a third time and see what happens. 

So it was ER positive, PR negative, the third time. So very strange. And so I asked, I said, you know, how often does this happen? And he said, no one gets it tested twice. So I found in that pathology is your map to the future. Your map to what treatments are chosen for you and what medications you're going to take, because at that point they gave me tamoxifen, which I wouldn't have been a candidate for prior with the other information. So I made it my goal, you know, and I had no medical background, no science background. 

I worked in advertising. So I just dug into the information to try to find out as much as I could about my cancer and about what was happening to me and my body. And I did question the doctors quite a bit. 

And to the point it was rather irritating to some. I remember the plastic surgeon, he was like, okay, Jennifer. He's like, you are so high maintenance. And I was like, what do you mean? And I said, don't other people ask questions? And he said, yeah, maybe three, not 300. 

I said, well, they should know too. And so I, you know, I call at this point, we didn't, you know, we did have the internet in 2000, but it wasn't as robust as it is now. And we didn't have social media. So I really, honestly, I called the American Cancer Society quite a bit, got information from them. I try to find trusted resources. And I did have get second opinions. 

I did go to many physicians to find out what the right course of action would be for me. You know, I found comfort in understanding because I felt like if I felt confident in the path that we were taking, then so be it. That's, you know, whatever happens happens. But I wanted to know, I wanted to feel comfortable in the path that we were taking. 

So it did require a lot of work. And, you know, when I counsel women today, I talk to them about, you know, perhaps getting second opinions and things like that. And it's not everybody is interested in that. And I understand that because ultimately the ball was back in my court because I had to decide if I had a conflicting, you know, opinions from physicians, then ultimately I was the one that needed to make the decision, which is hard, you know, because I had no medical background. And, you know, so it was, it was challenging, but I really ask, I encourage people to ask why to understand to try to find out what the options are. You know, okay, this is what you're recommending and not to, not to, you know, be not that your physicians aren't doing the right thing because they are. But I do think that sometimes there's those nuances that can make a big difference in, in, you know, perhaps your treatment or just even side effects and things like that. 

You know, so, so that's how I really just tried to educate myself. I went to the, the Pennsylvania breast cancer coalition has an annual event in October each year. I would attend that I went to their scientific training. So that was a, a course to try to get to us. You know, it's for lay people to be educated and to be empowered to help make decisions and also to be a voice for other, you know, cancer patients, breast cancer patients. I started at, you know, raising money. I would, I became, and I raised a lot of money for the American Cancer Society. I became, I was the volunteer of the year. 

I think in like 2002 or 2003, I had a lot of anxiety. So I had to put it somewhere. And so I chose to take that anxiety in fundraising and then also really developing a group of my own. So that's where the young women's breast cancer awareness foundation came from. I just, after treatments were over, they sort of say, you know, you're seeing a medical professional all the time. 

You're either getting blood draws or you're, you know, you're going to the hospital for this side or the other thing. And there's a comfort in that. And then when they cut you loose and they say, we'll see you in three months. And you're like, oh my God. Wait, wait. 

That's like an eternity. So what I did was really, and again, we didn't have Facebook. We didn't have social media. 

So I just started asking friends, finding people who are young. How do I walk this path now? What do I do? Like what, I don't know how to, my mind is like scrambled eggs. I don't know how to, how do I deal with the future? You know, what's going to happen to me? 

And that was just a constant set of black cloud hanging over my head. Like, am I going to live a year? Am I going to live 10 years? Like, am I going to, you know, what's going to happen? And that anxiety was just, it ruined my life. You know, so I had to try to find tools and techniques and ways to control it. 

And really for me, it was community. So we would meet at Panera for coffee. So there were other women that had either been further down the path before me or just getting diagnosed. And we collected together monthly, a couple of times a month. 

For dinners. And that was my saving grace really. It was a lifeline because I had people that I could call and say, you know, we went to the beach and with my three sons were growing up and we were in the ocean all day long. And I came, you know, I still have one natural breast. And when I came out of the ocean and I took a shower that night, there was something coming out of my breast. And I thought, oh my gosh. You know, and so I, instead of it ruining my vacation, I had someone to call and they were like, listen, this is what you're going to do. 

You're going to tomorrow morning, you're going to call the doctor make an appointment and then you're going to let it, let it go and enjoy your vacation. And I was able to do that because I had like a sounding board or, you know, and there's a million of those things that happen along the line because as after, you know, in cancer survivorship, if you get a hangnail, it's you can go from zero to six very fast. So that was always challenging. And so now, you know, I'm 24 years out from my diagnosis and I try to create a comforting space where women have those, you know, the ability to find that information, whether it's with me or for other individuals in our group. And, and I just, I really, really feel it's important to have a cancer community, whether it's 1 person or a group of people and and also individuals, you know, medical individuals that can also. 

Guide us because that's critical and can really, you know, bring a panic attack from 60 to 0 back down to 0 very quickly. And so as I, you know, moved along in my journey in the. In the cancer space, even I really tried to educate myself. 

I went to the National Breast Cancer Coalition. They have a lead training, which is basically again for. Lay people and they teach you basically how to sit on clinical trials and to determine where some of the funding will be going. So you become a patient voice. So I've been very blessed to be able to, you know, to be able to be an advocate and help women and try to work with other medical institutions to try to gain. The patient voice so that we can have a say in what's happening and what's being funded and what's being done. And just to allow them, I mean, even just when it comes to patient care, like what, you know, I get so much feedback from. This is frustrating at this hospital or this is a challenge and, and, you know, there are things that bubble up that are common at certain places and I try to communicate those those things back. And then also just even trying it, you know, in my work, I work in another nonprofit that we can try to develop programs that can help answer some of those missing. The things that are not being addressed are not being helped at the hospital level. 

Jill: Your breath of experience is amazing. And so I everything that you have taken to advocate for yourself and for other people is just amazing to me. Thank you. 

Jen Kehm: I mean, it really comes from it's a labor of love and also just returning what was given to me during that time period. You know, this, I mean, cancer can place you in a dark black hole and and how do you, you know, I didn't know how to get out of it. And I had many wonderful individuals, many nurses, many other cancer survivors and physicians that would that were really like steps out of that hole. And, and then taught me how to get out of that hole myself, which was even more valuable, which took a while, but it definitely could be done. And so that that is so I, I, you know, my, my hope is that I have the ability to do that for somebody else. 

Jill: I love the breath of your knowledge as well. That is so helpful to everybody you encounter in your personal life and in your support organization life. What are some of the most profound impacts you have seen out of young women's breast cancer awareness foundation? 

Jen Kehm: Well, some of the things that resonated and really why I wanted to, you know, create the foundation other than just having monthly coffees or weekly coffees was that I was, I kept hearing women in the chemo chair next to me that I found a lump two years earlier. But the doctor said, you're too young. Don't worry about it. 

You know, that's not even in my own case. I had palpable lumps. I had two palpable lumps. I myself had had mono when I was in college and my, my lymph nodes never, ever seemed to go back to normal after that. So I thought to myself, that's probably a lymph node, you know, and, and then I, you know, a couple of weeks later, I was like, okay, I better check this out. So I did go to the gynecologist and he had said, he touched it, you know, felt it and he was like, this is definitely a cyst. 

You know, it's not a problem. And then sort of as like, he, I think there was that little wink or not. And he was like, well, you know what, you should probably get a mammogram. 

And thank God he did. But not all physicians do that. I think more people are aware now. But at that point, this, that was really a huge part of our mission to make sure that not only physicians knew, but women knew that, you know, it's, it's still a small percentage of the people diagnosed. But if it's you, you need to know now and you need to pay attention and you need to also advocate. So one of the biggest, you know, challenges is trying to help these women advocate to either find another, if they're, if they're turned away from one physician, find another physician or push with that particular physician or find a way to get, you know, a mammogram at the minimum, because, you know, insurance wasn't paying. Like for me, I was 36 and if, if my doctor hadn't ordered it, you know, it would be hard for me to get it and get it paid for. 

So that, that was one of the primary things at that point, just education and awareness. Unfortunately, and I don't have statistics, but I do think more women are being diagnosed younger and I do think more physicians are aware of it. And so, you know, I don't know if that problem has been solved because it's unfortunate, though we do have more women, you know, we help women in their 20s that are diagnosed with cancer, 23, 24, 25. Many, some of them, some of them diagnosed right off the bat with metastatic disease, which is shocking to me. And, and it's, it's, it's very extremely challenging, particularly to be diagnosed in that stage of life, where you're just starting out, whether it's with your career. Financially, it can be devastating as well as from a family perspective, if you, you know, go through treatments, but your fertility is really challenged or taken away. It's, it's a, it's a huge, it's life changing really, you know, so it is some of the things that we try to educate women about, you know, so that they know how to advocate for themselves on those issues. 

Jill: I'm so glad you're there to help with that. And it is a real problem. It is a real issue that women are being diagnosed at a young age and oftentimes in a metastatic, hopefully not, but with a metastatic disease. And that, that in of itself is so much to deal with, not to mention that as you were saying, the stage of life they're in and all of the things that go off the rails for them is the other dreams, all their dreams, all their dreams. Their career, their family hopes, it's a lot. 

It is a lot. And I'm so glad that Young Women's Breast Cancer Awareness Foundation is there to help them through. So in your experience with your current foundation, this, and then the other not-for-profit you work with, what do you, what do you consider to be the largest impacts that these support organizations can make on people, make for people on the cancer journey? 

Jen Kehm: Well, I mean, I think, you know, just what I was talking about before, getting a cancer community is so critical. And that's, and then I, by, in defining that, I mean cancer friends, so to speak, or people that are experiencing the same thing. 

It doesn't have to be the exact same cancer or the exact same stage. But those people can really sort of normalize your experience because it's so hard. It doesn't matter what problem it is, but we tend to think we're the only one or we're the, it's just so isolating. And when you recognize that, wow, there are a lot of people that are dealing with this and they're doing okay. One of the support groups that we had, we had a woman who was intent on playing golf as much as she could. And that was so inspiring, not only for us, but for all the other individuals in that group because they recognize that she's not letting it stop her live her joy or what she wants to do. 

And so I always say cancer is, or not cancer, courage is contagious because it's so, I think sometimes we drop, go down into the fatal position and we're sort of wracked by fear, at least I was. And I can vividly remember when I was done with treatments and we had taken a trip with the boys and my husband and my parents to Hilton Head. And my husband was like, let's go rent bikes. 

And I was like, wait a minute, can I rent, can I ride a bike? And he was like, what are you talking about? But my body, my body was like glass to me. I was so, like my body had betrayed me. I didn't trust my body. I didn't know how to handle my body. 

I really felt like, what if I fall? And he was like, well, I'll help you up. But he didn't understand and I was so, I was really trapped by fear, really. Because, and so how did I, so if you could see these other people stepping up over the fear, then you think, well, maybe I could do that too. 

And so that's fabulous. And also, if you're in a support group, which is led by a medical professional, whether it's a nurse, a nurse navigator, or a mental health professional, I mean, they have tools and also excellent advice in terms of not only just what to do in the moment, but resources, whether it's the hospital, whether it's, you know, asking the physicians for different things. I mean, I always tease because, you know, we work a lot with the hospitals in town. And I said, you know, why do you hide all of these resources? It's like, why can't, and I know a lot of people when they're diagnosed, they get like a large binder and sometimes it's very overwhelming. And if you don't need it at the moment, you can only deal with like one thing at a time. 

So I totally get that. But there's so much to be, there's so many resources, so many things like you and I were in a support group. And there was a woman who had dealt with, you know, ongoing diarrhea for so long. And it really inhibited her ability to live, to leave the house. Really, I mean, she was really incapacitated and ultimately, you know, through our support group, she'd get, she learned of a particular provider that could really support and help. And as you can imagine, she fell to tears. She was, it was, it was life saving for her, life changing where she had the ability. She, you know, she wasn't learning that through her own physician's office. Sometimes people, you know, there are social workers, there are nurse navigators that can help you, but not, not everybody gets one because they're just, you know, there's not a one to one scenario. So you do have to learn how to be the squeaky wheel. And by that, just advocating for yourself, you know, you don't have to be aggressive. You just say, listen, I am having these issues. I would like to either talk to a social worker or see if I could gain some support through a nurse navigator or palliative care. 

You know, because there are so many ways that you can gain help. And even though it seems like maybe that's something you just have to live with, it's, it's, right. And, and unless you ask, unless you tell, and I know some, some things are embarrassing to talk about. 

I know that myself, I had cognitive issues after chemotherapy. And I really didn't want to share that with anyone. I didn't want to share with my husband. I didn't want to share it with my family. 

I didn't want to, I didn't know what to say to my doctor. I kind of thought it was just me. You know, I didn't know, I had no idea that other people experienced this too. I had heard of chemo brain is a thing. 

Jill: Yeah. And I, I had heard of it, but I didn't really know much about it. And, and to be honest with you, I didn't necessarily know that what I was experiencing was chemo brain either. You know what I mean? 

Jen Kehm: So, it just was, and then I, you know, I later got into a support group where they discussed chemo brain and I, I, I can't tell you how validated I felt. 

Yeah. And it was years later, you know, so, but it just made such a significant difference, particularly even the medication, like the one, the, the person that was leading it talked about how troxamine can also lead to that, which I had taken for five years. So you, you figure like, oh, take chemo is over. 

So I should be, you know, doing okay. Well, I was taking this medication that was causing it that I had no idea. You know, and I think, you know, sometimes physicians and oncology nurses don't want to tell you all this because they don't want to scare you in or, you know, sometimes create sometimes if you're thinking about it all the time, you actually make it worse than it is. 

But it is very, I don't know. It was just extremely validating to recognize that this, this in fact was, you know, I'm doing pretty well based on, you know, based on everything that happened to me, you know, but at the time it was extremely challenging. So I really try to give people a safe space to talk about that, whether it's in the support groups or personally, and then also given the tools and, and to be able to talk to their physicians about it. Or even like, you know, when, when physicians, like even in the groups, or I do personally is how if you're, if, if you're having it, you know, things are 100% right with you and your physician. How do you handle that? 

What do you say? You feel like you're being rushed? You feel like, you know, they're not taking you seriously. I had a, you know, a friend who had called that said that they were now metastatic and they felt like the doctor is just like, Oh, okay, well, you know, sort of dismissing them as like, Oh, you're metastatic. And so do you, do you have a conversation with that physician? 

Do you, do you change providers? Like, what do you do? And let's talk about that. 

Let's try to figure out what, you know, what your next step is because in the end you matter. And it's only, it's your life, you know, and it doesn't, it, so the, there's so many, so many things that are to be learned and to be gained from, you know, the support groups and then just talking to other individuals in the community that, you know, whether they're medical professionals or whether they're, you know, just people experiencing cancer. The other thing too is just sometimes it's even nice to see how people with other, other types of cancer. What their experiences are, men and women, it's, I think that that helps too. And to recognize that, that we all, you know, no matter what type of cancer it is, it's a challenge. 

Jill: Right. I feel like that so many people that could benefit from support groups don't participate. And I really hope the word gets out there through both my 

Jen Kehm: book and through this podcast that support organizations and support groups make a huge impact. As you were talking about the shared experience, resources, access to information, you don't know what you don't know. 

Jill: And that's, yeah, yeah, can help you understand better. And your physician may not understand what exactly to share with you either. Or may not even realize that you have a gap in understanding and that support organization can help you overcome that gap or the people in your support group. 

Jen Kehm: And thank you for talking about self-advocacy, speaking up, asking questions. That's one of the reasons why I put the book together. Cancer journey, guide and journals, empowerment and diagnosis treatment beyond. Are you going to hold it up? Thanks, Jen. 

It is a best seller in my house. It's definitely, it's, I mean, you've been able to beautifully articulate almost what I've been practicing over the past 20 years, plus a lot more because of your years of medical practice. I mean, you know, and I think I'm, I think, you know, when we're talking about gaps, you've really addressed so many of them and it's so, it's really, really powerful. And, you know, and it's, it really is a huge tool for patients and caregivers. Really. I mean, it can make a significant difference in how you feel and how you're able to navigate this journey. 

Jill: I really, I appreciate that. And I appreciate your feedback on it. You were such a, you've been such an inspiration to me for so many years. And I'm not, I don't practice medicine just to clarify for our audience. I am an oncology certified nurse. So I work in the cancer care continuum. 

But in any case, I'm finding everything you're saying so powerful and working in support group. Environment with you, Jen, we have seen so many transformations of people that have just been. and amazing and where we've seen people gain strength while we're talking with them and gain the ability to ask questions and not be intimidated anymore by that environment. We've seen people come out of their shells and go from very quiet and withdrawn to being one of the most engaged people in the entire support organization in the space of a year. 

And not that that's an expectation, it's not. Everybody has their own bandwidth, but just the ability for that shared experience and the support you get in that group to move forward and to learn how to advocate for yourself and to live life again. 

Jen Kehm: That sounds like, yeah, it is phenomenal. And that's for really two things that keep me close to the cancer space. One of them is just to see the amazing strength and the human spirit and how they overcome things or how they manage through things and really valuing life, recognizing that it can all change in a dime and let's just be present today. But then the other thing is the, being able to see the people bloom again and being able to witness that is, honestly, there's nothing like it. I mean, like we have, I mean, I have countless stories I could share with you. 

And so much of it is rooted in not only the therapy as well as the support groups because it gives you tools, because when you're thrown into this and that's exactly what your book does, when you're thrown into this, I liken it to being tossed. It was just like, I fell out of the plane and I was dropped into Russia and I don't speak Russian. So how am I gonna, what am I gonna do? 

How am I gonna handle this? And I knew that I was in a life-threatening situation. So I needed to understand the language. I needed to understand the customs. 

I need, and all of that is in this book and is in therapy and in the support groups because these people have walked the path before you. They've figured it out. None of us have it all figured out, but the reality is even just one small detail, like that woman I was sharing before with that one small medication that really nobody else knew about, she was able to function normally. 

For two years she was in her house. I mean, that's, and just to see like people, and cancer is a beast, and the reality is you really don't know what's gonna happen and sometimes people, sometimes physicians will put an expiration date on your head and how do you deal with that? Because it's not always right. 

And we don't, we can't always really predict the future. So there's that space of how do I, what do I do? Do I believe them? Do I try to outrun them? Do I try to, like what do I do? 

Like how do I do this? Cause so, you know, we have one person that really had, was living that situation, but was able to get it erased, you know what I mean? Like get that expiration date erased, which is honestly, it's a miracle, you know? And it's so amazing to be able to see that and to be able to experience them, you know, having the courage to get back into the game of living, so to speak. Because I think sometimes, you know, when all of this is bestowed on us, you're just frozen. And it's really hard to know how, how to, you know, with all the decisions and things that we have to do on a daily basis, you know, making, you know, working, making, you know, making choices where to live, what to do. Like, you know, it just is extremely hard when you're frozen. But I think through the tools, the book, the, you know, the therapy and the support groups, you can get unfrozen, regardless of what your situation is. Regardless if you have metastatic disease or not. 

Jill: Right, thank you. That's so nice of you to say. And I agree. I think a key point you are expounding on is how important it is to live life. There's no guarantee for any of us. So it's important to engage in life and enjoy it and enjoy your family and grasp as much as you can, no matter what your situation is and get your symptoms managed well enough so that you can do that. Advocate to say, I don't feel well. I need, whether you're in treatment or you're 10 years past treatment, talk to someone. 

Jen Kehm: And also journal, journal is a huge tool of that. So that when you talk with your provider, you can actually share what's happening and it's real data and they can help you more too. 

Jill: I have seen amazing transformations too that always stay with me. At the engagement that we see through activities, through a support organization, the shared experience, the sharing of this is what I did or this is what I said or this is what helped me feel better. Obviously always talk with your provider to make sure that it's the right thing to do, but that can be so helpful to get that kind of feedback. 

Jen Kehm: Yeah, and we should expound upon that, the symptom journal. I know you're a big advocate for that and you really taught me about that. And the reality is, is that can, your physician is only with you for a very short period of time. So this is so critical to be able to sort of crack the code to what's going on, whether it's a symptom, whether it's a pain or, and that, it sounds like, oh, what is tracking my symptoms gonna do? But the reality is it can really provide a lot of data. Right, and that is something really, I think really important to do. And I think you have many different ways to do it in your book, which I think is extremely helpful. And it just gives your medical team a lot more information to go on. 

Jill: But you don't even need the book. You can just use a simple journal to write things in and write notes in. And that makes it, thank you for saying something about the book, but just having that data, it's huge. And then also write down your questions for your doctor in your journal. 

Jen Kehm: Yeah, yeah, I mean, it helps to keep it all organized and to keep it all in one place. Cause I know sometimes I'll go to doctor's appointments, I write in this notebook, I can never find it again. I have to go. 

So it's all in one place. If you can put it in your journal or if you just have one book for it, it's extremely helpful. And that, when it comes to trying to advocate for yourself, and even though we all have the electronic records that we can look into and stuff, it doesn't, what you, your input still matters. And your input is what you can sometimes put that in that chart. But for the most part, we should be paying attention to our own self. I was reading a book that they were talking about almost looking at your body, cause I can remember, and I hope my brother-in-law doesn't hear this, but like my brother-in-law used to track, like he ran Ironmans. 

So years ago, like 20 years ago, he had a blog online and he would, you know, put down how much he drank and how much came out. And we were just kind of laughing about it. But the reality was he was really trying to get as most that he could out of his body. Like he was trying to, it was, you know, trying to sort of treating it like a machine, so to speak. And I read this book recently that cancer patients should look at their body that way, that they should, you know, just really almost treat ourselves like high level athletes so that we can understand, like we can listen to what our body is saying. And then, and pay attention to the signals and whether it's not necessarily measuring all that kind of stuff, but just recognizing, you know, like if you, like, you know, I was taught, like if you have a pain for more than two weeks, then you should call your doctor after a cancer diagnosis. But is it like, what kind of pain is it? Is it shooting pain? Is it like, is it come and go? 

Is it constant? Is it like, all of those things make a difference and they will ask you, you know? So it's best if we already have that information up front and we can make, you know, more educated decisions. 

Jill: Absolutely. And you touched upon another key point of treating yourself like an athlete. Exactly. So making sure you get good sleep, making sure you eat good food, making sure that you practice good self-care and that you get rest when you need it, that you exercise. All of those things help you tolerate treatment better and they help you feel better through your survivorship. And they improve the quality of your life significantly. 

Jen Kehm: Yeah. And all of them can be helped in one way or another, you know, if you're having, I mean, I'll be honest, it was very hard for me to sleep. I was racked with anxiety. Like my kids were little, I read them books and I would fall asleep in their bed and then I'd wake up at midnight and then I was like, oh my God, what's gonna happen to me? Like how's this gonna play out? 

What's gonna happen? And so stress really impacted my sleep. So I really had to work on different, get, you know, talk to the doctors, try to get different tools and techniques and things that could help me, you know, gain sleep so that I could repair, you know, it's important to do that. And there's a lot of tools out there, but, you know, definitely talk to your physician about it, but those things, you know, trying to eat, and it does put a lot of pressure when you're going through something like that, you're like, some people get paralyzed with food. Like I can't, you know, they don't want any sugar or they're trying to eat like everything organic and it becomes expensive and challenging for your family. And, you know, maybe inhibits you from going to a friend's house for dinner because you can't eat, you know, that kind of food or this out of the other thing. But I think everything in moderation, but it's important just to learn if there's a challenge in that area, you know, talk to somebody about it, see if you can get it worked out. 

Jill: Great points, absolutely great points. So what are some of the most amazing transformations you have seen through support organizations for individual people? Oh, I mean, I've seen, I've seen a lot. 

Jen Kehm: I've seen like, particularly, I mean, a couple of people come to mind, a woman who had metastatic breast cancer, she was originally diagnosed 15 years prior and then it had come back as metastatic and she was really frozen and she had had, you know, a family and was really not functioning. And she was, you know, crying all day in bed and not knowing what to do. And she threw a lot of support, whether, you know, support groups as well as therapy. She is still, you know, I guess it's six years for her now and she has been, you know, working, functioning, doing everything that she needs to do and has really, through the guidance of support groups and therapy has sort of reorganized her life to reduce the stress load because she was managing a very large stress load. 

So she reorganized and was able to make it work with a different job and was able to find ways to, you know, just through just trying to identify, you know, what some of the tougher areas and reduce those. And I mean, there's countless stories of just amazing, but you also have to recognize the loss. I mean, we do have loss and how do you help someone through that, you know, the patient as well as the caregivers and loved ones. I mean, that's important support as well, you know? 

It's not, you know, that's still a very big area whether it's, you know, a support organization or whether it's private therapy or that's really, really important to get help as well. 

Jill: So it's not just loss of someone passing on, but it's the loss of the life that you had before your diagnosis because you have you're a different person after your diagnosis. And how do you deal with that effectively? And how do you go on living and engaging in being and life and enjoying life? 

You have to acknowledge that. And the resources that you're talking about help you do that. What, how do you, what are ways that you advise people to access counseling resources if they can't afford the co-pays to see a counselor? 

Jen Kehm: Well, in many cities, like the nonprofit that I work for, we do six free sessions. And across the country, there are many organizations that do something similar. And you, you can, you know, I mean, I would just, you know, Google where you live and then try to, because most therapy is only done within state lines because of the laws in terms of who can, you know, take what the licenses are for that particular individual. But it's really very helpful to put you into a better headspace. 

There are similar organizations, like I said, all across the country and some national ones, depending on age and stuff like that, which may or may not do therapy, but the support groups are there. And it's, you know, because like, the metastatic space has particularly changed since the 20 some years that I've been advocating because thankfully more and more women are living longer. However, like, you know, because initially, I believe a metastatic breast cancer diagnosis was 36 months of survival. 

Now it's over five years, which still is not obviously, you know, for a young woman is challenging. However, some of these women, you know, you're in pretty hardcore therapy. And sometimes you're taking these medications. 

They, a lot of times they'll take oral pills as opposed to going for chemotherapy and they don't lose their hair. So many of their family members are like, what do you mean you're not dying? You're not sick. So there's this really odd space where you look normal, but you're actively, you know, you're very, your life is threatened. And you're dealing with these side effects that can be very difficult. And what do you do? You quit your job because you still need, you know, going on to social security disability is an option, but it's very minimal. 

So how do you, particularly if you're young and you have children, how do you, what do you do? And, you know, I've had women that I've worked with that their bosses were like, what are you, like, do you really have cancer? Like, are you making this all up? 

I mean, and it's horrible because these women are like thinking, well, I can't even believe this guy is like, you know, questioning whether I'm lying or not. Because so it is, it's very strange. So, and as you well know, it can change on a dime. Like it can change. And so these women sort of walk that line of being able to, you know, live the best life that they possibly can and trying to enjoy things with their family because they know that it can change in a heartbeat, but they also have to recognize that potentially they could live several years and they still need, like they can't spend all their money and go to Hawaii. 

They need to, you know, figure out how to, so it's a whole new space. And so it is a, it's a head game and that requires, you know, because you don't look like the classic metastatic breast cancer patient that's bald and, you know, is in a wheelchair or whatever. You, you, you know, you look actually, you look pretty healthy in many circumstances. So it is a, it's a hard space and it's hard because, because, you know, so I know, thankfully, I know women living 12, 14, 16, 18 years with metastatic breast cancer, but they've lived that one day at a time. I mean, they never, you know what I mean? 

Jill: So it is, that is a whole. And you have to stay on treatment during that time. Right. And the shared experience of being in a metastatic breast cancer support group, they could all relate. And that women will get incredible support in that group. 

Jen Kehm: Yeah. And, you know, I think you would ask a question a while back about, you know, some people are reluctant to join these groups. And I would, I would, you know, it's been our experience that, you know, the groups that we're a part of, I think sometimes people think, oh, it's just a bunch of people complaining or whatever, because I think support groups get that connotation at times, but it's really not. I mean, it is like in our situation, you know, the individuals are sharing their challenges and many people are chiming in with solutions. 

Yeah. So it's, so even though you might be, you know, they might be able, and thankfully they feel comfortable to share some of these deepest challenges with us. And, but we're trying to find solutions, you know, and that is the beauty of it. And it's amazing to me how many people have, you know, come into the support groups and said, oh my gosh, I don't know why I waited so long. 

Like what, what, what was wrong with me? Like I had no idea. And a lot of people sometimes, you know, we have support groups in person, some, but we have support groups on Zoom. And sometimes people will come on Zoom and then just keep their camera off and they won't say a word and that's fine. 

You know, you can just, like, right, you can just, you could just observe and you don't have to participate at all. And, you know, again, there's the incredible support groups across the country. So if you, if I would give one a try for three or four sessions, if it doesn't work, find another one, you know, you, the mix up of people is always different and the vibe of the support group is different. And, you know, you can definitely find one that works for you. 

Jill: So the particular support groups that you and I have participated in together, Jen, I love how that we have, we started out with saying hello just like you do in normal every day. How are you? Sometimes there's banter and laughter. We go into someone presenting great information or we go into what's your news? And then, and so people sometimes share really hard stuff to say that maybe they can't say to their family or can't say as honestly to their family. And then from there, we move into oftentimes banter and laughter. Again, there's this shift where you go from warm to, okay, here's the news that's not so hot, but everybody else uplifts them. And it's truly uplifting. And then we go back into banter and laughter and we really do try to close on a warm, happy, good note. So people can walk away feeling good about things. And I love that actual shift that occurs. I find that incredibly valuable and people keep coming back. 

So they must, they must as well. Another organization I wanted to bring up is CancerCare.org which has oncology trained social workers who will do counseling with you. And then also they have virtual support groups that are both Zoom type meetings and then message board type support groups. They are nationwide and they will also provide some counseling. 

Can't say it would be long ongoing counseling sessions, but they'll get you started and help you identify maybe what would benefit you the most. But that's a great organization to start with too, CancerCare.org. 

Jen Kehm: That's good. That's definitely good to know. And I think, you know, just there's so much out there, so much available that people just need to start somewhere. And it might not be a home run the first time, but it just like anything else. If you just continue to try and continue to learn, you're gonna be in a good spot. 

Jill: So thank you for everything you do, what you've devoted your career to. Thank you for all the support you give women with breast cancer and young women's breast cancer awareness foundation and the awareness that you create. I think it's a phenomenal organization. I know it's a phenomenal organization. Thank you for sharing the importance of the support organizations of counseling and of journaling. And is there anything we haven't covered that you would really like to talk about? 

Jen Kehm: I don't think so, but I mean, I think it's just important to, you know, really try to advocate for yourself and try to find the best scenario that you can for your treatment and for your, to share your, you know, what you have and don't go through it alone, as they say. It is extremely isolating and extremely lonely to have cancer and to go through. 

And like you were saying, some of the losses you know, obviously the passing of a person is one thing, but there are so many, many or micro losses in the cancer space. Perhaps you've lost your job, perhaps a relationship has changed. You know, many friends who you were close to might not know how to deal with it, so they back away. 

But oddly enough, some other people just sort of climb out of the woodwork and there are, there can be new relationships built. And, you know, if we can just, we just take that first step, it's hard, it's scary, but you can do it. And it's definitely, I mean, and I would definitely recommend this book and trying to, and trying to get, you know, there's a lot of stuff coming at you if you're newly diagnosed. So just take one step at a time, you know, just try to understand your disease. And honestly, probably one of the first things I would do was get your book just because I think it's a great framework. 

And it doesn't all have to all be done at once. You can look up certain things like this is my issue. And then you could just look that up and try to, you know, seek more information about it. But there are a lot of people that want to help you. 

No one wants you to have, you know, no one wants you to go through this alone and no one wants you to suffer more than you need to. You know, and there are tools and, you know, things that can make it easier. So, you know, reach out, you know, come and join us. It's definitely, definitely helps. 

Jill: I would say support groups can give you and support organizations can give you courage as you talked about in advocating for yourself. The book is a guide of self-advocacy. American Cancer Society and so many other organizations have information on how to advocate for yourself. 

American Cancer Society is a great place to start. Just starting, you can go into all kinds of rabbit holes there, but their information is succinct. It's easy to read. It's easy to go through. It's easy to find things. 

I love them. And the, there was one thing I was gonna bring up on now. I can't remember what it was, but that self-advocacy piece is so important and get encouraged from other people so that you are not isolated. And they understand once you open your mouth, you don't need to explain anything. They've been there. They know you just need to talk about your exact problem. 

And another, oh, I know what I was gonna say. The other piece of grief that I think a lot of people, and you brought it up early in the conversation is, when you're cut loose from your treatment team, you grieve that loss because they have been such a foundation of support for you and of reassurance. And you're like, oh my gosh, what do I do now? And a support organization is the perfect place to turn to. It's reassuring. It's with people that have some expertise and or a shared experience. And they'll welcome you with open arms. 

Jen Kehm: Yeah, exactly. I mean, I think a lot of times, like in our case, obviously you have medical experience and we have a lot of other individuals that do as well. And so it can sort of be that safety net, so to speak. And another place to ask questions. Like, and a couple of weeks we're having physicians come in and talk and so you can ask questions. 

And I always found value in being able to ask other physicians that are dealing with the same type of cancer questions so I could double check my physicians. Yes. But and so there's a lot out there. It is hard, depending where you are on the journey, if you're recently diagnosed, I think it's still very valuable to get connected. But even more so, like you said, when treatments are over, it's almost like it is definitely a huge safety net and can be a really great support tool to get you to back to joy again, you know? 

Jill: Yes, yes. And your point about asking physicians other things. Second opinions are so important. When you are initially diagnosed, and then your physician should not go on the defensive that you're getting a second opinion, your oncologist, they should actually be happy because they will build confidence in the treatment plan they've developed for you. 

It may shine light on other aspects of your diagnosis or a need for treatment that can be really helpful to you. Second opinions are important. And there's a lot in the American Cancer Society, CancerCare.org in my book about the value of a second opinion. 

Jen Kehm: Yeah, I mean, I saw three physicians for each step that I made. And I haven't found anybody else that has done that, but that was on the heels of a medical mistake that really sort of rocked my family. 

But it did teach me a lot and it did show me that there are different nuances. Like for instance, Sentinel Node Biopsy was it's just in clinical trial. So we had one physician that was participating in the trial and two that were not. And not that that's a clinical trial, it's a little bit different, but it became standard of care now because that is the, they feel that that's the best way. 

And then ultimately I ended up having cancer, my lymph nodes anyway, so it wouldn't matter. But there are differences, there are differences in what people are trained in and what they have available to them. And even different hospitals, like some you would have to have, you can have both, like if you're gonna have a mastectomy, you can have a breast surgeon and a plastic surgeon together, there's sometimes they're two separate surgeries, there's a lot of different things. 

And I just, I really encourage people to, to learn as much as they can. And actually to be honest with you, it kind of solidified like in my head when the first physician told me I had breast cancer, I was like, okay, like I really didn't believe it. I was pretty much in denial. By the time I got to the third doctor, I was like, okay, I have breast cancer. It was sort of like, I needed, almost needed that repetition. 

Which is, it's hard, it's hard to be able to do that. But you should, if you do not, if you have a gut feeling that this isn't right or something isn't sitting well with you and that physician, you have every right to go for a second opinion. You have every right, regardless of whether you like that physician or not, just to get more information. And I think you've shared, you could call your insurance company, right? Is that like, and they can set you up for a second opinion if you don't know where else to go. 

Jill: Jen, thank you so much for joining Everything Cancer Podcast today. I so appreciate your time and your knowledge. And I'd love to have you back sometime and thank you. 

Jen Kehm: Oh, it's been fantastic, Jill. Thank you. Thank you for all your help. Great. 

Jill: Thank you. Take care, everybody. Thank you for being here and listening. We hope you enjoyed this episode of the Everything Cancer Podcast. If you would like to show your support, there are links in the show notes to do so. The information in this podcast is not intended to be used for medical advice. For any healthcare concerns you may have, please consult with your own healthcare team. The staff here at Everything Cancer Podcast will not be answering individual healthcare questions. Thank you. Take care and we'll see you back for the next episode of Everything Cancer. Bye-bye.