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Ilene loved writing, drawing, jewelry making, music, and all things vintage and antique. Reading and learning and laughing and singing and dancing and hiking and just meditating. A little gentle yoga and hikes in the Sierra foothills of California certainly keep things interesting. Equally as important she enjoyed guest blogging and writing for publications. Her cancerversary was on March 25th – diagnosed de novo – from the beginning – with stage 4 metastatic breast cancer. I have lived 7 years beating the savage average mortality of 2-3 years. Ilene was forced into retirement at the age of 49 and started her blog, the Cancer Bus and a small Etsy business as well as completing healing circle training through Healing Circles Global. Ilene was a member of the metastatic breast cancer community and especially active on Twitter @ilenealizah. She was also a friend, sister, wife, stepmom, and cat mom to Simon. Hear Ilene on our Podcast Breast Cancer Conversations I was Told I Had 3 Months to Live What Inspires You To Write? Pink Culture. Bridging the Gap Between Stage 0-4 Why "How Are You?" is such a Weighted Question Breast Cancer Poetry Read Ilene's Poetry Live With Your Questions It's Another Thing Now The Last Poet Standing Insomniac Stage IV Read Ilene's Content on our SBC Blog The Healing Circle Framework Healing Circles and Breast Cancer Stay in Touch If you have a memory, story, or photo you'd like to share, please email it to info@survivingbreastcancer.org and we will add it to this page.

“I was 23 years old when I noticed a small lump in my breast. My doctor told me not to worry. It was probably just a cyst. One week later, I got a call that the “cyst” was actually an aggressive form of breast cancer. After a grueling year of chemotherapy and radiation, I had lost a sense of identity after shaving my shoulder length red hair. I no longer trusted my body, but I anticipated the worst was behind me. I was 25 years old when my cancer came back. I decided to remove both breasts to ensure that this would be my last time dealing with this disease. While I planned my double mastectomy, surgeons said nothing about the possibility of the cancer spreading into other parts of my body after the surgery. I was 28 years old when I was diagnosed with terminal breast cancer. If my story can help even one person it’ll be worth it.” Melissa was 32 when metastatic breast cancer stole her from this world. Melissa’s Legacy Melissa believed in the power of film and spent her life using that power to support women and mend impacted by cancer around the world. We at the Melissa & Jimmy Boratyn Foundation aim to live up to the standard she set by creating art that makes an impact. Hear Melissa on our Podcast Breast Cancer Conversations Ginger the Movie - Interview with Melissa and Jimmy Stay in Touch If you have a memory, story, or photo you'd like to share, please email it to info@survivingbreastcancer.org and we will add it to this page.

Kristin Lynn "Kristie" Konsoer, age 51, peacefully returned home to God on Sunday, Dec. 5, 2021, after living over nine years with breast cancer. I was born on May 30, 1970, in Madison, the daughter of Donald and Carol (Christensen) Konsoer, and grew up in Middleton, Wis. I loved Sunday visits with grandma on the farm outside of Wisconsin Dells. School was also one of my favorite places. I loved learning so much that I would often play school when I got home each day. I was a lifelong reader, writer, and learner. Over the years, I was fortunate to have traveled widely throughout the U.S. and visited 26 countries. Family vacations held many favorite memories for me. Disney World, national parks-Yellowstone in particular-and Fish Creek in Door County are forever in my heart. After graduating from Middleton High School in 1988, I went on to UW-Madison where I received my B.S. in elementary education in 1993, and my M.S. in curriculum and instruction in 1999. As part of the Portage Community School District, I taught split grades for nine years in Endeavor, Wis. One of those years was spent teaching in Edinburgh, Scotland, as part of the Fulbright Teacher Exchange Program. In 2002, I was hired to teach in Middleton-Cross Plains. I taught at West Middleton and my alma mater, Elm Lawn, for 14 years before I needed to choose a very, very early retirement. Over my 23 years as a teacher, I was blessed to teach grades 1-4, and roughly 543 students. I loved being a teacher. It is what I always wanted to do and thankfully what I was able to do for many years. One of my friends once told me that the skills and abilities I gave my students would stay with them beyond the classroom. I hope I played a small role in forming individuals who can think and be kind to another. I loved nature and walking on trails shrouded by trees. They offered peace and energy to my soul. Gallistel Woods at the UW Arboretum and making the trek to the top of the hill at Pheasant Branch were favorite places to relax, where the journey itself was every bit a part of the destination. Birdwatching was another favorite hobby of mine. Chickadees, cardinals, and the tiny but strong voiced wren always made me smile. I would be remiss if I didn't mention my love for Badgers football. Badgers are very special fans, as were my Badgers companions. I was lucky to span over four decades of games cheering on the team with my father, then my mother, and finally my sister. Go Badgers! Throughout my years living with cancer, it was very important to me to change perceptions about those living with metastatic cancer. More people are living stronger and better than ever before with cancer. Live in a future built on hope, resiliency, and positivity. I appreciated every ounce of support I ever received, but I saw it as my responsibility to create a mindset geared toward surviving and thriving. I was not going to be put in a box of medical timelines and what others expected or told me I could or could not do. If you are someone reading this who has cancer, politely make it very clear to anyone who gets in your way that you are living in a space of wellness. You have moved beyond the medical classifications of your health and do not accept discussing your health in unhealthy or disparaging terms. Thank you. I hope I am remembered as kind and giving. Some may remember me for my chocolate chip cookies and brownies, and that is fine and good. I want to take a moment to say giving is one of the truest joys in life. Whereas it's tradition to receive gifts on your birthday, many of us may be missing the opportunity to take this day as a chance to give back. My birthday was one of a couple days per year that I would quietly donate to a charity that was important to me. I would like to pass this tradition on to whomever it appeals. You are here on purpose. I am preceded in death by my parents and survived by my sister, Julie (James) Ackerman, as well as many extended family and much-loved friends. I would like to express my gratitude to Dr. David Hei, Dr. Kari Wisinski, my angel nurses, and the entire staff at the UW Carbone Cancer Center. I am also very thankful to Dr. John Ewalt and Associated Physicians for a lifetime of healthcare. I survived many things in my life, most of them good. I believe I will also survive my death. Rest assured, right now I'm doing really, really well. Yes, I would rather have stayed here to laugh more, make more of a difference, and enjoy life, but leave all those things for you to do and to do them well. God bless. Read Kristie's Articles Empathy and Cancer Hear Kristie on our Podcast Breast Cancer Conversations On Empathy & to Withhold Judgement Stage V Breast Cancer. Living on My Own Terms Stay in Touch If you have a memory, story, or photo you'd like to share, please email it to info@survivingbreastcancer.org and we will add it to this page.

There’s no other word to describe the feeling when you or someone you love is diagnosed with cancer. On any given day, you might rotate between feelings of disbelief, anger, and grief. You may even feel like you’ve lost control over your own life. While your diagnosis might raise any number of negative feelings, here's the good news: you don’t have to feel lost or confused. In Cancer: The Journey from Diagnosis to Empowerment , Dr. Paul Anderson clearly outlines what you can expect throughout your cancer journey. More importantly, he demonstrates how to cultivate a mental outlook that will help you reach your best outcome. When it comes to healing, mind does matter. Drawing on decades of experience, Dr. Anderson offers practical advice to demystify the healing process, empower patients, and teach loved ones how to provide effective support. ♡ RESOURCES MENTIONED ⟡ Cancer: The Journey From Diagnosis to Empowerment: https://amzn.to/2NrybmM ♡ QUOTES WE LOVE ⟡ “Be as healed as you can be” Transcription: Laura Carfang 00:03 Hello and welcome to breast cancer conversations podcast brought to you by surviving breast cancer dashboard. I am Laura Carfang, breast cancer survivor and founder of surviving breast cancer dashboard, a nonprofit organization providing community education and resources to empower those diagnosed with breast cancer and their caregivers from day one and beyond. Hello, everybody, and welcome back to breast cancer conversations. It is so nice to be speaking with all of you today. If this is your first time tuning in, welcome. It's so nice to have you here. Please be sure to subscribe. We release our podcast once a week, usually on Mondays so you can always have something to look forward to as we begin our week together. Before we jump into today's conversation, I just want to give a quick shout out to all of the great amazing resources we have on our website surviving breast cancer.org. I got some feedback actually, that some of our listeners don't know about all of the amazing events that we have every week, every month, etc. So I want to make sure that you guys are aware. Every Thursday night, we host our Thursday Night Thrivers virtual meetup. It is our aka support group. But it's really anything but a support group. It's kind of like chill time to hang out at 7pm. Eastern, everyone is always welcome. I also kind of coin it our no agenda meetup because we talk about anything that comes to mind. Sure, breast cancer, but also anything else that we're going through in life, it's just a really nice time to hang out, chill and catch up. So if you want more information on that, you can visit us at our website surviving breast cancer.org forward slash events. You will also find on that website more information on all of the amazing webinars we have coming up our Sunday NBC series where we host webinars every other Sunday, plus our monthly book club where we read books that have nothing to do with cancer as well. So as we build this community, there are just so many ways to get involved. And speaking of books, I am excited to announce today's podcast topic where we are going to be speaking with Dr. Paul Anderson, who is the author of cancer, the journey from diagnosis to empowerment. As we know, there's no other words to describe the feeling when you or someone you love is diagnosed with cancer. On any given day, you might rotate between feelings of disbelief, anger or grief. You may even feel like you've lost control over your own life. We've all been there. While your diagnosis might raise a number of negative feelings, there's good news, you don't have to feel lost or confused. In Dr. Paul Anderson's book, he clearly outlines what you can expect throughout your cancer journey. More importantly, he demonstrates how to cultivate a mental outlook that will help you reach your best outcome. When it comes to healing. Mine does matter. Drawing on decades of experience, Dr. Anderson offers practical advice to demystify the healing process, empower patients, and teach loved ones how to provide effective support. Welcome to the conversation. Dr. Paul Anderson 02:57 I've been around medicine a long time. So I started in the laboratory end of things in 1976, actually, so it's been doing this a while, went back finished medical schools A long time ago. And what happened really just the very short version of the story is when I started practice, I really wanted to be a general practitioner, which is what I was. But I was also very interested in a lot of integrative medicine topics and palliative care things. So what started to happen almost right away when I opened was people realize that I was doing certain types of therapies that other doctors in the neighborhood weren't. And so we started getting a lot of cancer patients. So it really it didn't start out that I thought cancer would be the focus etc. But that's really very rapidly what happened very sick people with not with the chronic illness and cancer. And that really grew into you know, if you go back, say 25 years or more there, the idea of palliative oncology was almost non existent. The idea of integrative oncology was almost non existent. I mean, it was really, we, we were all learning a lot. But people needed help. So that's really where it started. And from there, there was a good part of 20 years where I did that a lot. I also have always taught I teach physicians as a large part of what I do now. And mentor doctors and so I was really involved in trying to, you know, move that part of medicine forward. And in and amongst all of that in about 2000. Let's just for sake of argument, say eight or nine you mentioned that I ah I had a university post where I was full time professor in a medical school and we I had a NIH funded study we were doing. And it was a collaborative between my university in the Seattle Cancer Care Alliance, which is University of Washington and Children's Hospital and Fred Hutchinson, and you know, some very big players. And what it started was I didn't start with study, but I joined it right away. And it was if we took people who had largely breast cancer, but there were a lot of other cancers as well, from this large, collaborative, those who wanted to do integrative therapies and palliative therapies, this stuff I've been doing, what if we track them, and then match them to people same age who did standard therapies, and so everyone did standard therapies, but we had good add ons. After five years, would we see better quality of life or survival, etc. And so we did that for five years, what got me involved was the study had an interventional part, that they couldn't start until they had somebody who had done that before. And that's what I was doing, the intravenous therapies and all of these other interventional things. So I was part of that for the five years, and I almost thought we got funded because they didn't think it would make a difference. And at the end, we actually got some very positive note that our patients did actually live longer, you know, compared to age matched, and it spawned another study that looks a lot at quality of life and some other things that are going on. So I've had a not planning at all, but I've had a very rich background with cancer patients. And so what really happened as far as writing about cancer, I've always written because I'm a teacher. But right after the study, I started to publicize some of the things that we had done, because if you've ever looked at studies, there may be parts of the studies that no one ever publishes, because there's so many things you discover, you didn't realize. So I went and started teaching. Well, I was doing that. And a doctor I hadn't seen in 25 years, who went to medical school together, came up to me at a conference and said, You should really tell this story. And you, he says, you have a hard time getting a publishing deal, though, because you're, you know, no one knows you except in the academic world. And he says, but I can get you a publishing deal. So we wrote a book together that was predates this book, which was really a lot about those other things, sort of the, you know, what I would call the what happens to you with cancer and what what are choices to make that are better and worse in the, you know, integrative space, etc. When we were done with that books, in many languages around the world, it's been very popular call outside the box cancer therapies. But we were done. I was mentoring my clinic and my doctors, and one of the things that I I felt like we did a great job with the, what do you do with cancer as far as your body goes, but what we kept I kept running into was, we talked a little about the mind body connection, and just the logistics of, oh, what do I do with this diagnosis, I didn't want it I you know, what I do with my family, what I do with, you know, everything. So the more I worked on that with my own doctors and mentored people, the more I thought, you know, agnostic of how you're treating cancer, what you're doing about your cancer, the internal part that you go through, and your closest loved ones go through and you get diagnosed, is so critically important. So that led to this book, cancer, the journey from diagnosis to empowerment, literally the point, it's, um, I designed it to be easy to read, not super heavy and academic was the first time I ever wrote something like that. But honestly, it was it. This, I mean, there is some research and some data and things that I, you know, looked at or whatever. But really, this came from just my day to day experience over those three decades. And looking people in the eye, getting diagnosis and walking them through that. So the point really, is, there is a way to go from the shock and whatever emotions go on that you feel to a place where you are more, you know, empowered, self-actualized, whatever you want to call that. But it doesn't happen automatically for most people. So that's, that's the short version of all those years. Laura Carfang 09:30 No, that's wonderful, such a rich introduction as well. And a, you know, decades of experience, which I'm so excited to have our listeners kind of take us on this journey, right from diagnosis to empowerment. I feel like anecdotally we speak about that a lot in our like support groups and our blogs and the work that we do, because we know that we anecdotally it makes us feel better, right when we exercise we feel better when we take time to focus on the breath and the mind body connection that you're talking to About, we know it helps, but we don't always know why it helps. And I would like to take a step back quickly to just so we can define terms for people who might who might not be aware when we talk about kind of like the traditional therapies, I think you're referring to like the surgery, the radiation and the chemotherapy. Whereas integrative care, which I think is a nice segue from what used to be referred to as alternative medicine, where it's no longer alternative, it's how can we put these therapies together? And really integrate them so that the quality of life and you know, is there for the person going through the treatment? Do I have that correct? Dr. Paul Anderson 10:34 Very much. Yes. Yeah. Excellent. It doesn't always work out that way. But that's the goal. Yeah. Exactly. Exactly. Laura Carfang 10:43 And I know when I was going through my own personal treatment to a lot of these integrative therapies were recommended to me, such as acupuncture to help with some of the side effects that I was going through. And, you know, it's, I think, just a mindset also. So what I love about your book, is that right from the beginning, you kind of paint this picture of the shock and the devastation that comes with a cancer diagnosis, and then how mentally we can start making this shift. And you kind of talk about two different characters in your book and kind of the diversion that these two characters take. Can you tell me a little bit about these personas? Dr. Paul Anderson 11:20 Yes. So there's, there's two characters that you get to meet Well, you get to meet some other people later, but Bob, and GM, and they're actually real people, obviously, it's not their names, and I change details, so no one knows who they are. But they're very real people. And that was a big part of the motivation to write the book, other than what I was seeing just with patients, and there was sort of a hole here in that space. But the the publishers in I came up with the idea of, could I tell two stories. And the publisher really encouraged that, because the rest of the book is useful from a technical point of view of Gee, I'm stuck and I'm angry, well, you know, where do I go or I, you know, I can't get my family on board or whatever it is. The stories really are there to give the two counterpoints two ways you deal with the, you know, that trip from being diagnosis, to either not empowered or being empowered. So each one of them embodies that. And it's real stories. It's a, you know, everything a book is very real, from real experience. So the point of that, though, is sometimes we you know, sometimes we learn from data and bulleted points, and there's that and sometimes just learned from stories, stories are wonderful. And my, the first thing I was like to say is I don't, I don't judge either point of view, I, of course, you never want a patient to become angry and stuck, and, you know, self-sabotage, but you know, one of them did. So it didn't make me happy that they did, but that's, that's the person's choice, everything's your choice. But if you want to do something other than that, you know, there is a trajectory. So those two stories really are, we see a lot of ourselves in them in different places, and the stories, you know, each, each chapter sort of as the technical parts of where to go, the story kind of unfolds in that, you know, in that order and direction. So yes, it's there to add some humanity to, you know, what otherwise could be a little technical book Laura Carfang 13:25 Absolutely. And I think sometimes we forget that our own diagnosis extends just beyond the self, that it impacts our families, our friends, and I use the term like we all the time, like we have cancer, we are going through cancer, we are going through treatment, because as I think you point out in the book is there's this grieving process, that we're all on a different journey in terms of those, like anger phase denial, phase acceptance, phase etcetera, but then our family and loved ones might be on a different path also. And so how do we deal with these different personalities or, you know, my experience, I love my mom to death, she's a nurse, and she, when I was going through breast cancer, she wanted to be the nurse. And I really had to turn to her and say, No, I need you to be my mom right now. And that was a challenging and hard conversation to have. But you know, I think you talk about that also in your book in terms of the role the family plays, and the grieving process too. Dr. Paul Anderson 14:22 Sometimes it's the patient with cancer, who is the one really struggling and may be stuck in, you know, denial or whatever stage of grief. And I did use those stages of grief, you know, to it's a framework we're all familiar with, usually and it is actually the order that people kind of process cancer diagnosis into but the other side of it though, is you can actually be doing pretty good as the patient but you have to understand and it's not your responsibility, but the people around you who love you and are close to you are just as shocked and just don't know what to do and they might be angry or they might have You know, what happens a lot like with your mother, as a nurse or any, you know, any medical person, their default is if I do something for you, medically as a nurse, or if I'm your doctor, I'm doing something to help you. And really, it's harder sometimes to take that roll off and just be the loved one, you know, the parent, the spouse, the partner, whatever. And that's really, we talked about that, in the book, those discussions of Look, this is, it's great, you want to do that, but this is what I need from you, you know, I need this primary relationship we have, and it's so important. And a lot of times, and I saw this, you know, weekly with with patient families, some, it's just like, it works out, and everyone sort of sorts out where they're at, and they get over, you know, the place they were stuck. But sometimes you really have these two divergent things, especially with like partners or spouses. And that's not a healthy, like, none of you the point of the book is, if we move more towards being empowered, in our small circle, including the patient, our outcomes are better, it's, you know, it's not great to have cancer, but it's, it's a more doable thing, and you actually get better outcomes when you do have that. So the fact your close circle is, is so huge. And, and they're going through it a different way. You know, what I usually remind people is when you hear that you have cancer, it activates your your fight or flight system, and it activates, you know, your partner's fight or flight system, but what that connects to is two different worlds, you know, they may have seen some, you know, very bad outcome with cancer had a primary, you know, loved one or relative go through something that they thought I'd never ever want to see that my life, well, then you hear, well, my wife has cancer, it's, it takes them there, then take him to some logical place. So there's a lot to, you know, it's not easy, but it's really worth it. And it's really worth it at least to get the people closest to you on board. Laura Carfang 17:09 I think you were hitting on some key points about you know, empowerment, how can the patient feel empowered to have those conversations with people to say, this is what serves me now, this is what's helpful to me and what's not helpful to me, I think a lot of times, you know, it's easy to just kind of harbor some of those emotions. And, and that really makes sense of it. And, and to feel that it's okay to disagree with someone, if it doesn't help you. What I love about your book is that you immediately say like, it's okay to be selfish Now is the time to put yourself first and yourself and your health are the only things that matter. Everything else is secondary. And I think just reading that was like, like, yes, like, I'm ready to go take on the world, like, I matter, I'm important. And I can say, like, yes to what I need, and whether that's a nap or whether that's a walk, you know, I sometimes feel like having those words and reading them, give us give us the permission to say that it's okay, it's your allowing us that permission just to be okay, on those good days. And to not be okay, on those bad days, Dr. Paul Anderson 18:10 As you well know, it's, most people are not socialized to a place where it's okay to, you know, be the center of what needs to happen. And, and that becomes a real, you know, stumbling block for a lot of people, which is why, you know, almost every, if not every chapter where there's sort of, you know, you can get stuck here and move on. The first thing I say is, it's okay to be that way. It's okay to be sad, it's okay to be angry, it's okay, whatever. The point is, that's a place in time and you want to move from there. But the other thing is, it's, it's more than okay for you to take care of yourself and say, whatever it is, you know, I, I can't do this activity anymore, I need to focus on this or I need time, so I can take care of my body or whatever it is. And most people just don't have that internal, the message they hear back is well, you should think about other people or you know, something like that. And, and, you know, we shouldn't think about other people but you, you are engaged with, you know, a process that's not got your best interests at heart. So you have to have your best interests at heart. Yeah. Laura Carfang 19:24 And you definitely make that connection between like the emotional piece, those thoughts we tell ourselves in our head, and the impact that it has on our outcome and diagnosis. A lot of the conversations that I have in some of my circles most recently, I am four years out from my original diagnosis, and I am still healing I am still now trying to let go of the pre cancer me work on the current version of me. And also trying to be gentle and practice that self care piece because there's still a lot of things that I can't do. And just last night in one of our support groups that we have Every Thursday night, we were talking about, like, we can't go, we can't ever go back, just like the grieving process, right? Like, we can't be in that hole of, Oh, I wish I could have done should have done, you know, used to be able to do. But look at all the amazing things now that I can do, because I've come out on this other side, whether it's, you know, I no longer practice the vigorous yoga I used to do, it's more of like a slow meditative practice and, and coming to terms with that, I would love to hear your opinion on kind of like the self care and the self healing piece. And what you say to someone who still may be a little bit stuck in, in that like, sad world of like, How did this happen to me, but I want to come out of it, how can I take better care of myself, Dr. Paul Anderson 20:42 And that's where the rubber meets the road really, for most people. The first thing, you know, that I think is most important with that discussion is allowing the person time to get to that place where they actually say it. Because if if some outside person just tells you, you know, look, you you need to stop thinking about the past, and you needed to do some self care or whatever. Sometimes people need that maybe to move off the dime. But really, that has to come from within. And I think the most important thing is it's not. It's the extremely rare human who wakes up one morning and says, Okay, today, I'm all about self care. And I'm going to forget about the pre cancer me, most people, it's just, I've come to realization, I want to go there, I have no idea how to do it. So I'm willing, but I'm, you know, unaware. That's the moment at which then, you know, the whoever is helping, whether it's a medical person, or family or therapist or whatever, or support group. That's the point at which you provide resources that are the next steps. And I think the most important thing is not overwhelming people. Because you can come to realization, you know, for people who don't have cancer, it's, sometimes they'll come to realization, I need to take better care of myself and exercise. Well, if you suddenly give them you know, a 400 point exercise plan, and they've never exercised it, they're not, you know, that's overwhelming. Same if you have cancer, and you realize you got to do something, and you have to move away, you know, from past thinking, etc, you got to start with just baby steps and move forward. So a lot of it is that holding a place for the fact that you're doing it this realizing you can only do so much at a time. And, and really the you know, you probably saw kind of the order the book is written in, what I say is that you might be great with the stuff in chapter one, but chapter two, you might be stuck at great spend some time there, you know, it's baby steps. And every day, just, you know, just like grieving or just like processing anything, every day is a new day to do that, too. So you don't necessarily wake up on day two or day 20 and say, you know, I've got all that handled, and, you know, most the time you wake up and say I still have cancer and I need to, you know, I need to be in this other place with it. So a lot of it is just being gentle, gentle motivation forward tools when they're needed, but not too many. Because I, I did see that a lot that that sort of stimulated some memories for me about when I was thinking of writing the book, mentoring doctors, especially, you know, newer ones, and they would get a cancer patient give them way too much all at once. And the patient's just like, you know, overwhelmed with, you know, so they have all this physical stuff they're doing and maybe they're doing, you know, chemo, or maybe they're getting surgery and recovering and doing 11 other things. And then they've got, you know, a 40 point list about changing their diet and their mental set and their other site. Without cancer, you can't do all that, you know, with it. So, you know, so let's, you know, let's start with one thing and move you forward and keep going. That's, I think that's the most humane way, but it's also the most sustainable way to do that. Laura Carfang 24:16 Yeah, I hear a lot of times that, you know, cancer can be that catalyst that wakes us up. And that ignites some sort of flame within us to make behavioral changes. And another piece that I love about your book too, as you give us all of these tools and allow us to linger in various chapters as we're doing the inner work to heal internally. I think that's incredibly important what you mentioned and resonates with me very much so to say that we have to want that change, we have to want to have that mentality and shift because if it doesn't come from within it's going to sound like one more thing on our to do list and potentially, you know, depending on your your behaviors and character like it might retract, right? You say well, I don't want this at all and I'm even going to hibernate even more so It's definitely a fine line and something that people need to tread lightly on for sure. And, you know, I think one of the tools that you you share in the book is the opportunity for us to control what is in our control, and then let go of what is not in our control, I think so much of a cancer diagnosis, when you feel like everything is ripped out of you, how can we make sense of what we can do on like, kind of the small chunks, and bite sized chunks of like, day to day, this is something that's in my control. And it could be that mindset, or it could be the diet, it could be taking a walk, or an exercise, like something that is tangible, because so much of it is unknown, especially in the cancer world, right, we have, treatments are constantly changing or evolving based on how you're responding to a particular drug. And, you know, I hear a lot of times too, you know, we think we're going in for one surgery, and then lo and behold, there's an infection or something happens, or you need for breast cancer, your exchange surgeries, like, there's so much, and there's a lot of unknown. And, you know, to kind of tie this back to those various phases of grief and loss and sadness, and then unknown, but we just want control, we want to know what we can do. And I used to tell my doctors to like you're in charge of the medical side, I'm in charge of like, the health and wellness side, and we can meet halfway, and I feel that way that I am empowered, and that I can take an active role in my health. I think you speak a lot about that in your book as well. Dr. Paul Anderson 26:30 Yeah. And it is so critically important, with, with cancer as a journey, but especially like with what you're describing where treatments can change, suddenly, surgeries Can you know everything can change suddenly, because your body is going to react the way your body reacts. And we see that all the time, you get 10 people with the same chemo regimen, and, you know, seven to one way and you know, three to three different ways. And so, you know, part of what I try to get to in the book is, those are things that you don't want to totally, like, just go on autopilot and say, Well, whatever, you know, but I mean, you only have so much control over how your surgery goes, that's, you know, you can prepare for it and all that stuff, but the rest is about the surgeon, your body and how it all works together. Same with chemo, you know, or a targeted therapy or something, your body and your immune system do the work and you may not have total control. And one of the things I've seen that gets people to stay stuck is if their focus is all on, you know, especially people that like a lot of control, that's probably that's a human condition. But, you know, some people are much more into control and other people. I've seen them get so tied up in those things that they can't really control, that there's no energy for this stuff, you can, you know, which are the harder things literally waking up and saying, you know, it's another day with cancer, but it's, you know, it's my day, it's, you know, this is, you know, this is going to whatever happens, however I feel, it's still my day, and this is going to be how it goes. And I think that that switch of doing inventory, because you know, every month is different, what's in your control, what's kind of in your control, like you could maybe choose your doctor, maybe choose whatever. But beyond that the medical side, like you say is it's going to do what it's going to do. So then you got a whole bunch of other stuff you're in control of and that and that, that is empowering and of itself, because people get to stay stuck in the area of stuff they can't control, you're automatically disqualified you like you, you're disempowered, because I can't be empowered about something I have no control over, you know, I can be empowered about how I am around that. But, you know, so focus on the stuff that you you're totally in control of. Yeah, Laura Carfang 28:57 You know, with a cancer diagnosis I was, you want a plan, you want that roadmap, and I had to quickly learn, I think it was my second appointment after chemotherapy. And I was like, that plan has to go out the window. Like I just can't hold on to that. And it's I think it's also hard to going back to the chapters on like family and friends. They turn to you to say like, well, what's next what's happening next, they want a road map also. And so all of a sudden, it can be compounded with you know, I was given some information, the information changed. And now as I'm talking to new, the newly diagnosed it's it's very similar type of peer to peer advice of, you know, you have to be flexible and nimble and just kind of go with the flow sometimes because it'll save you some stress and heartache. Dr. Paul Anderson 29:46 You really have to hold it with an open hand because there's just, you know, there's so many things that can change and not even go wrong. Just change you know, and People obviously we don't, you know, if we don't have cancer, we're not usually sitting around focusing on how cancer is treated and things. But, you know, I was trying to tell people look, you know, your radiation oncologist or your medical oncologist or surgical oncologist, they have huge jobs that have almost no margin for error. And so their whole world is tied up in doing dosing your radiation, or figuring out your chemo or changing your chemo or doing the right surgery for the moment. To keep you as safe and healthy as possible. So like, that's their world, they're really tied up in it. And you just don't know how many variables they have to sift through. So changes are part of the deal, usually. So, you know, pick good doctors, let them do their work, keep on top of what they're doing, ask questions, but then, you know, focus on being as prepared as possible to either do or not do treatment or be as prepared as possible to deal with what you can it's, it's a huge thing. If you think, Oh, you know, cuz I'll use this analogy. Most of us have been to the doctor because we got, you know, strep throat or we had a broken leg. Those are pretty linear treatments, you know, there's X amount of time, there's this medicine, and you're better sometime, that in the future. Cancer doesn't work that way. You know, every day, there's sort of all these variables you have thrown up in the air, and then, you know, you see which balls hit the floor first. And that's what you do. Very different. So it, it's Yeah, that's really good peer to peer advice. Laura Carfang 31:38 100%. And I think that's a great way to reframe it as well, taking it like you're not changing it because I'm just going to be very candid. Like, I think sometimes too, it could be like the trust that we have with our doctors, right, it's like, you're given one thing. And now you're changing it on me. And I think the way you just reshaped that was like, okay, it's a positive, you're changing this because you're tailoring it. But it's my own symptoms and my reactions that I'm having, which is completely different than somebody else. And so I love that, that's great positivity, I want to pick your brain a little bit more on the mindfulness and kind of taking a deeper dive into the integrative therapies and complimentary care that you were discussing in your book. And I know you also mentioned a little bit about palliative care. And I think sometimes we think about palliative care as like, end of life and sometimes use it interchangeably with hospice, but it's not necessarily and to utilize the palliative care and integrative cares as quality of life. How, how can we speak about quality of life? And how do you define that? Dr. Paul Anderson 32:40 I think that's a really good. And sometimes I, I forget, because I think of palliative care is really encompassing, but a lot of people do they hear palliative, and they think, Oh, no, you know, it's the same as hospice or something. Now, it can include that. But really, as I was mentioning earlier, you know, 2030 years ago, the idea of palliative oncology was just end of life care. It has come a very long way since then. So now what that really means and maybe a better term, although it's not the term people normally uses is, you know, quality of life and health enhancement is really what you're talking about in modern times. Now, he going back to just what I said earlier about, you know, you've got your surgical oncologists and medical and radiation oncologists there, their world is wrapped up in their treatments, which are so complex, they understand the need for this other stuff, but that's not their job. That's not what they do. You know, it's people like me who do the quality of life and other care. What I usually tell people is there, there's really four steps in a cancer journey. The first step is you don't know you have cancer, and its primary prevention. Most people are always making cancer cells, but they don't develop cancer don't do too later. The next step is what the book is talking about, which is diagnosis and initial treatment. And then the next step is actually recovery from treatments so that you know, you stay in remission or you get towards your mission, etc. And then the next step is secondary prevention, which is, let's not have it come back or get worse or you know, whatever. And the reason I divide it that way for people's minds is the amount of effort and energy you as a patient, have, time wise, energy wise, etc. to put into working on those things is very different at each step. primary prevention, preventing things it's that can be 100%. If you are just starting with some surgery and chemo or radiation or whatever, you aren't going to have time and energy for very much you're going to do you like to say baby steps just to shore up everything. But in the recovery part in what I would call palliative or quality of life recovery care. It's not about hospice or any of life normally, it's about let's get you recovered from, you know, all of all of this treatment you just had. It's, you know, there, there's no, uh, maybe there is I can't think of a cancer therapy of any kind. That is any fun and you come out the other side feeling healthier than you did when you started. It's, it's, you know, there's this job you're doing of treating cancer and now you know you want to recover? Well, one of the things and I get to the mental emotional part in this book, the prior book, we talked a lot about it medically, but the more you do on the other end of recovery from surgery, radiation, chemo, etc. Actually, the more calm your cancer stem cells are, and the less chance of recurrence later on. So when we're talking about palliative oncology, yeah, it's the whole spectrum. And while it might include more end of life things, that's, you know, 5% of what we're trying to do, mostly what we're trying to do is make you as healthy as possible, so that you have the lowest index of cancer wanting to come back or be aggressive, etc. So it's a, and there's, there's so you know, if I think of just what we didn't know, five or 10 years ago, but if we go back 25 years ago, was like, well, we can do something. I mean, it was, it was really, it just, you know, it's it's been logarithmically expanding. And, and the research has to, I mean, you know, the first book we had, like, over 1000, scientific, you know, resources. This book isn't so much about that, but but the mindset part, I guess, you know, big reason for the book, this, this book about the mindset is and empowerment, you can do all the, the perfect medical oncology, you can do all the perfect recovery and palliative and quality of life stuff. But if your brain is stuck in that place, where you're still angry, you, you know, don't want this cancer, you're mad at it, it's, you're a victim, your body doesn't feel the same. And so it's it's part and parcel with the external things you do, such as, you know, fixing your body after surgery, or, you know, recovering from chemo or whatever. It's also your brain being on board with that. So it, you know, moves you forward. Laura Carfang 37:25 I couldn't agree more, I think the mental side is the muscle we have to work also, right? It's not just the physical, you know, the exercise, but how could we mentally help ourselves grow after such a traumatic diagnosis. And I completely agree, I think when we talk about the secondary prevention piece, and I do kind of want to reframe this also, because I'm also very sensitive to a lot of women in our community who were diagnosed with metastatic breast cancer de novo. And so there is some anger there where you don't have that initial early stage, to have that option. You think you're being preventative, and there's a variety of reasons why that happens. But you know, when we an app, I don't want to put words in your mouth or look for your buck. But as I was reading about the secondary prevention piece, it wasn't just a second recurrence of breast cancer, but it was that no evidence of disease or no progression of disease, right? Like, how can we take this and again, still feel empowered, and even with a terminal diagnosis still move forward. And, again, be empowered with the choices and the control that we have? Every single day that we wake up? Dr. Paul Anderson 38:36 You did a good job putting words in but the idea was secondary prevention, of course, is you there, there are things you can do to get to a certain place there. But as you say, some people and this was a large portion of our patients started out de novo with, you know, metastatic disease, and they, you know, there isn't the first two or three steps, you know, it's just boom, here it is, and here's what we're gonna do about it. So secondary prevention, the nice thing about the more modern way of looking at it is, it's not just for people with no evidence of disease or into remission. It's also for people who are either really, we had other two other areas, one was progressive, but but slow progressive disease, and the other was stable disease. And so you may have metastatic, you know, stage four cancer, but you can do everything you can to keep it either very slow, progressive or stable. So it's not in remission, but it's remission. Like, there's a lot of things you can still do there to manage all of that because, you know, you're just as shocked but I would say yes, probably a little more anger comes up because you feel like gosh, why couldn't I have been diagnosed? Stage One, you know, like my friend did or stage two, in here I was diagnosed at stage four, which is a lot of people nowadays. You don't even, that's not part of your choices, which is terrible, it's too bad, but that's the way you know it is. So for that person, they have to rewind to the place where you process the anger and the loss of total control over everything. Plus, you're grieving the fact that you didn't get it stage one diagnosis to deal with or, or a stage two or something. And it's the same steps, it's just you, you're going to deal with different emotions, because you literally had a whole bunch of options you never got important part is, it's still so critical to to do the mental emotional and Mind Body connection, work, etc, to get beyond that, because we've literally had people with metastatic disease, who, you know, through whatever combination of therapies and, and supportive things stayed stable and had very good quality of life for years and years and years. And, yeah, they never, you know, stage four, cancer didn't go away, you don't really see that very much. But they had, you know, what they said, were wonderful life, you know, wonderful quality of life, dealt with it as it came in. And I think, you know, it's, it's, that's it, those are the elephants in the room, which are, nobody wants to talk about that real harsh reality that, you know, and again, you're not telling the person will get over it, you know, because that's, that's not, it's, you know, you don't have to get over it, you have to, you have to recognize you have every right to be angry, because this, there's nothing fair about this. But staying in the anger won't make you healthier, you know, processing it will moving forward. And we had, you know, in the, in the NIH research, the large majority of people that were doing interventional things, I was in charge of all but one where stage four people most stage for a diagnosis. And they were which makes you more amenable in research to do all sorts of things, which is what we did. But they were, they had all mostly come to the place where they were so they were an empowered group. And they didn't like having stage four cancer, and, you know, they didn't like the effects and all of that. But the reason they were part of this research project, and we're we're in my section where they knew that at some point, it would help somebody down the road. Laura Carfang 42:48 100% response I totally agree. Dr. Paul Anderson 42:50 Those are the people that motivate me, many of them are no longer with us, but a lot of them still are, you know, we we had one lady that was diagnosed at 85. Doctor said, she wouldn't live to see 86 and we celebrated her 90th birthday in our office, and she made it to 96 years, and she lived 10 years. And it was all her like, just the way she dealt with it. So, yeah, it's not, you know, none of the things are easy. You know, these aren't easy conversations to have with yourself, let alone with you know, people in your circle, but they're so necessary for your mind to be free to let you be as healed as you can be. Laura Carfang 43:38 I think the positive affirmations and you know, not letting someone else dictate time, that how much time you have left to live, no one can say that, right. So right and wake up in the morning saying, today's a new day, I'm going to live it to the fullest. And you know, it's it definitely has a positive outcome and relation on your own mental health and on your body and on your outcome. So it's really great to hear. Dr. Paul Anderson 44:05 Very much Yes. Laura Carfang 44:06 You'll be able to buy this book cancer, the journey from diagnosis to empowerment via Amazon. It's also available on Kindle, as well as an audiobook. I will link to all of this in our show notes below. So this has just been wonderful. Thank you so much. Dr. Paul Anderson 44:21 Thank you. It's a perfect organic conversation. Laura Carfang 44:24 Yeah, exactly. That's how I love them too. Thank you for tuning in and listen to our podcast. If you'd like to find out more about our organization and upcoming events and ways to connect. You can find out more by visiting our website at surviving breast cancer.org. And we'd like to acknowledge that all of the information on our podcast is from personal experiences and it is not a substitute for professional medical advice. You should always consult your medical care team. If you're looking for specific topics or would like to be a guest on our show, feel free to contact me directly at Laura at surviving breast cancer.org. And of course, we have a couple social media handles. You can follow us Sat as well. For example, surviving breast cancer org all one word, as well as our podcast, specifically breast cancer conversations. Until next time, keep on thriving.

TRANSCRIPTION: Laura Carfang 00:03 Hello and welcome to breast cancer conversations podcast brought to you by surviving breast cancer dashboard. I am Laura Carfang breast cancer survivor and founder of surviving breast cancer dashboard, a nonprofit organization providing community education and resources to empower those diagnosed with breast cancer and their caregivers from day one and beyond. Hello, everybody and welcome back to breast cancer conversations. It is so nice to be speaking with all of you today. If this is your first time tuning in, welcome. It's so nice to have you here. Please be sure to subscribe. We release our podcast once a week usually on Mondays so you can always have something to look forward to as we begin our week together. Before we jump into today's conversation, I just want to give a quick shout out to all of the great amazing resources we have on our website surviving breast cancer.org. All of our podcast listeners are invited to join us on Thursday nights for our Thursday night drivers meetup. We meet on zoom every Thursday at 7pm. Eastern you can RSVP from our website, and a zoom link will be emailed to you. We also send out weekly newsletters on Mondays and Fridays. We have an every other Sunday metastatic breast cancer series that we produce, as well as a once a month breast cancer book club that we host. The best part about the book club is that we don't read any books that have to do with cancer. It's pure escapism, a lot of fun. And we meet on the first Sunday of every month. You can check out what book we're reading again on our website. Today on the podcast, we are speaking with Karla who is not new to breast cancer conversations. She actually provided us with a beautiful 45 minute long episode where she shares with us everything she knows with regards to nutrition education around clean eating and living with metastatic breast cancer so I'll link to that full episode below. However, I wanted to pull out a short excerpt from that longer series because we want to focus on Phyto estrogens. If I breast cancer is ER positive, it can be very confusing to understand if we should be avoiding soy eating soy products, avoiding Phyto-estrogens etc. I am so excited to have Karla back on the episode to help us answer some of these questions. Welcome to the conversation. Karla Mans Giroux 02:17 Now let's talk about Phyto estrogens and breast cancer and Laura and I talked a little bit about this ahead of time and I do like to share this information and it is controversial. But there are studies that show of course you'll always find on any topic study that's forward a study that's against but Phyto estrogens are plant based compounds that mimic estrogen because their chemical structure is very similar to that of estrogen from the body. They have been found to be beneficial in combating symptoms and conditions caused by estrogen deficiency. Therefore, this may be a particular benefit to pre and post-menopausal women who are having their hot flashes. Phyto-estrogens may also play a role in fighting cancer. However, it is still controversial and more research is absolutely needed to understand this. Unfortunately, they do not spend a lot of time and money on researching something that can't be patented. But there we are. There are studies that have revealed that high consumption of soy products is associated with low incidences of whore hormone dependent cancers, including breast and prostate. Soybeans contain the large amounts of isoflavones. Previously, it's been demonstrated that genistein, one of the predominant soy isoflavones can inhibit several steps involved in carcinogenesis. So it can inhibit the development of cancer. It is suggested that genestein possesses mechanisms of action, including inhibition and modulation of different signaling pathways associated with the growth of cancer cells. Moreover, genestein is also a potent inhibitor of angiogenesis. Uncontrolled angiogenesis is considered a key step in cancer growth, invasion and metastasis. I see Dr. Keith Block of the Block Center for Integrative Cancer Treatment in the Chicago area. I've talked to Dr. Block many times about soy and breast cancer and fighter estrogens and breast cancer. Dr. Block has told me that processed soy foods such as soy burgers typically contain very low amounts of that genestein and other soy items such as miso and soy sauce contain even less. In fact, he says a whole bottle of soy sauce contains only about six or seven milligrams of isoflavones, which would have no effect at all on breast cells, though it would be quite a lot of salt. So Dr. Bullock counsels that there is no need to pass on the tofu or the tempeh, so long as you're eating soy foods in moderation, just like anything else, and be sure your soy is non GMO. Dr. Block also stated in a 2016 article that he wrote, he stated in 2016, the studies suggested that eating moderate amounts of soy foods is safe for breast cancer survivors. In fact, in studies conducted by Dr. Anna H. Wu, and others at the University of Southern California, show that women who consume approximately one to two servings of soy food each day are not isolated soy supplements, you want to avoid those. But if you eat soy food each day, you actually have a reduced risk of breast cancer recurrence, or being diagnosed with the disease. And moreover, these studies, there were three studies in China and two in the US that provided further evidence that women who ate more soy have better survival after breast cancer diagnosis than those who ate the least soy. Laura Carfang 06:20 Karla, as always, this has been so helpful, I am definitely going to look on PubMed, and I will link to some of these studies in the show notes below so that our readers and listeners will have access to this information. Thank you again, for everything that you do for our breast cancer community. It is always a pleasure having you on the podcast. Thank you for tuning in and listen to our podcast. If you would like to find out more about our organization and upcoming events and ways to connect. You can find out more by visiting our website at surviving breast cancer.org. And we'd like to acknowledge that all of the information on our podcast is from personal experiences and it is not a substitute for professional medical advice. You should always consult your medical care team. If you're looking for specific topics or would like to be a guest on our show, feel free to contact me directly at Laura at surviving breast cancer.org. And of course, we have a couple social media handles you can follow us that as well. For example, surviving breast cancer org all one word, as well as our podcast specifically breast cancer conversations. Until next time, keep on thriving.

By Guest Blogger, Abigail Johnston In January of 2017, at the ripe old age of 38 , I felt a lump in my left breast. I was tandem nursing my almost 4-year-old and almost 2-year-old at the time. I started taking herbs and saw my lactation consultant since I’d already had a few clogs. I always had an overabundance of breast milk, so much so that I donated over 25,000 ounces to a milk sharing group during my 4 years of nursing and pumping. My lactation consultant thought it was nothing but since the herbs weren’t working, she wanted me to see my PCP. My PCP is super chill and tandem nursed her kiddos, so she was not too concerned. Her comment was that she was 95% sure that it was nothing but since my mom was then a 14-year breast cancer survivor and I’d never had a mammogram, she sent me for a mammogram and a diagnostic ultrasound. Since we were expecting some difficulty with my dense and milk filled gigantic breasts (seriously, I went from barely a B to at least a DD while nursing and I’m 5’2”), she told me not to let the radiologist do a biopsy if there was any suspicion but to call her for a referral to a specialist. I didn’t know what to expect at the mammogram appointment but I certainly did not except to drench the machine in milk. Also, it HURT!!! The tech wasn’t very happy about milk everywhere but seriously, that crazy machine HURT!! I pumped before the scan and pumped again during a break and we got some pictures. Tech didn’t have a poker face, so I knew something was up. After the diagnostic ultrasound, the radiologist came in and wanted to do a biopsy right then. Since my PCP had already told me to call her after the mammogram, I explained that and they freaked. I was taken to three different people, including a social worker before they finally let me leave AMA. It was after office hours at this point and I left a message with my PCP’s answering service on the way home. It was a Thursday. She called me back that Friday morning after having looked at the scans and the report. I think the only explanation at this point for the fact that I was not freaking out was that I was in denial. I was convinced that everything was fine and went to the appointment with the surgeon the following Monday without trepidation. In hindsight that was pretty naive but I am thankful for a few more months without the weight of cancer in my life. The surgeon did the biopsy in her office that day, also not what I was expecting and we left with some amount of concern to wait for the results. I leaked milk from the biopsied area (at around 10 o’clock right outside the aureola on my left breast) for about a week and my kiddos thought that was pretty funny. The crazy bruising wasn’t as funny and the anxiety even less. On March 8, 2017 , we got the results of the biopsies. The suspicious lymph nodes were just full of milk but the lump in my left breast was breast cancer. Invasive Ductal Carcinoma which was ER/PR+ and HER2-. I later found out I am BRCA- but then so was my mother. At that point, we met with a medical oncologist and a radiation oncologist and started the process of drying up my milk. It was tremendously difficult and abruptly weaning both Boys was just plain awful. I felt like I was walking around with a bomb inside me. I was limping at this point, favoring my right leg — I’m not a complainer and I simply didn’t bring It up. In hindsight, that wasn’t the smartest move. We decided to do a lumpectomy and my surgery was on April 11, 2017. The surgeon was able to get clear margins and I was considered node negative since only one of the 4 sentinel nodes had some trace cancer cells. Trace cancer cells means less than 200. We hoped I would just need radiation and again waited for the oncotype results. Still naively hoping we were in the clear. Original staging was 2b. Oncotype score came back in the high side of the gray range and so we had to adjust our thinking to include chemo. Original plan was 4 rounds of AC and then 12 of Taxol. I started chemo and in the haze of the day after the first chemo treatment nicknamed the “red devil,” my medical oncologist called to say that something was wrong with my blood-work (he didn’t say tumor markers then) and we’d need to do more tests. Still naive, I didn’t get upset or exercised and I went in for a bone scan and CT scans within a few days. Took nearly a whole day and when we got the call the next morning that we needed to come in, didn’t matter what time, just come, and a sense of doom began to settle over us. The weight of all that was and all that might be was stifling. The next day, June 22, 2017 , we went to my medical oncologist’s office to find out that the cancer had spread, not through my lymph nodes, but through my blood to take up residence in all of my bones. That limp I mentioned earlier, turns out I had a 5-cm tumor in the middle of my right femur. My organs were and are clear of mets so far. My husband had insisted on coming to my appointment and we both cried and cried and cried. Life as we knew it had already shifted and now it had taken a dark turn. About a week later, on June 30th after having multiple MRIs and skeletal studies, an Orthopedic surgeon put a titanium rod inside each femur secured by 4 screws each. We also did some additional genetic testing and found out that I’m positive for the ATM mutation. I kept going with AC but we decided to leave Taxol for later. I did 10 days of radiation on my legs and my back (big lesion at L2) in July as soon as I was healed enough from the surgery. I had a full hysterectomy on September 18, 2017 and I started Ibrance and Letrozole in August, 2017 . For now, all of my mets have shrunk and I’m getting more and more limber each day. I’ve added yoga to my routine, which is really helping with flexibility. In October 2017 , we finished closing up my office and moved to Miami to live with my parents for the help and support. I’ve been able to access disability benefits and I’m trying to figure out what’s next. Becoming educated and keeping up on research as much as possible has become a little like a full-time job! I’ve added acupuncture, chiropractic, supplements, diet changes and medical marijuana to my regimen. I like to say that we’re combining the best of Eastern and Western medicine the best we can. Recently, I’ve developed heterotopic ossification in each thigh, which basically means that I have bone growing inside each of my thigh muscles. None of the bone pain I’ve been managing prepares me for this much pain. We’re working on building muscle to cushion the growing bone and there may be more surgery in my future, once the ossifications stop growing. My very first thought in June when we got the news was that I wanted to spend as much time as possible with my children. That’s what I’m doing. I’m spending time with my family and creating a new life and memories for as long as we have. Our focus is living in the present and working to maximize the joy of the time we have. I’ve got boxes started for both Boys and I’ve been working on letters and cards and mementos. I worked with a nonprofit recently called Thru My Eyes to create a video for my children to watch after I’m gone. I’ve also started a box for my husband to stash important reminders and letters. Thinking about leaving my kids sometimes leaves me paralyzed but it also clarifies things. While I’m still able, I get out of bed each day and spend as much time as I can with them. When I can’t get out of bed because of all the side effects I deal with daily, we get lots of snuggles and cuddles. This is our life now, in all it’s beautiful mess.

So many updates to share! Everything about cancer is new to me. There is so much about my body that I know nothing about. Nor do I understand how this is all going to work. I am going through treatment, trying to understand it all, and process all at the same time! It can certainly be overwhelming! Today, I am focusing on two topics. The decision to get my port placed, and an update on my hair situation! I was in shock when I found out that I was going to have my port placed in the morning and a few hours later receive my first chemo treatment. While this sounded rushed to me, it was pretty standard practice. However, the moment I was on the stretcher in the hospital, being wheeled into the operating room, the tears came streaming. I’ve never had to have surgery before and when I came into the operating room, it was just like what you would expect from seeing ER or House on T.V: Lots of people in scrubs, face masks, sterile table, big bright lights, even a two-way mirror where others are monitoring computer screens. If this isn’t your normal, it is definitely scary! From there, I was brought up to the infusion center to receive my first round of chemo. Again, being my first time, everything is so overwhelming! The Adriamycin and Cytoxan came in a bag that had the yellow skull symbol on it reminding me that the contents inside the bag were dangerous and toxic. Nurses had gray gloves and were handling the IV and chemicals with such care and I was just sitting there waiting for these new drugs to start coursing through my body. A very overwhelming day! But I survived and I am here to tell you all about it!

Guest Blogger: Lucy Wright Before I faced cancer I always naively believed that a survivor was someone who defeated something and that was that! I have now come to realize there is so much more that comes with being a survivor, whether it be mentally or physically. I want to share something with you that made me want to write this piece today. I was in hospital waiting to see my plastic surgeon and a lady came and sat next to me. We got talking and people who know me know I am very open about my journey. This lady told me about her sister who passed away from lung cancer and like many others, she said I was lucky to still be here and survive the disease. When this was first said to me not long after my treatment, I didn't think much of it but now I am 20 months on from my last chemo and I find this hard to digest!! Surviving something like cancer is not lucky. I am of the belief that it's the outcome of treatment and how positive you are. But there is nothing lucky about having to endure chemo, face life changing surgery and radiotherapy. Yes, I am clear of cancer but I had to face the toughest time in my life to get to this point and that was not due to luck. I have never been lucky, as I also lost my mum and dad within 9 days of each other when I was of only 17/18 (both sides of my 18th birthday). When cancer patients finish treatment, it is not the end, this is just the beginning for a survivor! Not only do you have to get over the physical effects of treatment, whether it be chemo, radiotherapy or surgery but you also have the turmoil of dealing with the effects cancer has on your mental state. There is always the " What if's' '. My mental state is pretty positive, maybe not sane but I manage to keep my thoughts on track. When I have a moment of "what if my cancer comes back, what if I die, how will Nevaeh (my daughter) cope if I am not here, will I ever think how I used to?" My Macmillan nurse told me it is normal to have these thoughts and taught me a great way of dealing with this: If the thoughts enter my head, I need to take a minute and visit my demons. I have to let myself have the minute but then put them in a box and forget about them until next time they creep up. This technique really works for me, I might look like a crazy lady for a few minutes but what's new! I find I constantly worry when I get a cough or an ache! Could this be my cancer returning or a new cancer? It never stops, the checking of my breasts (I can now say breasts) and I am mentally exhausted but I just plod along. Survivors will always be over vigilant when it comes to their health. Before my diagnosis, if I got a cough I would think it's a cold, now I contemplate whether this could be a symptom of a cancer! We just have to channel this in a healthy way and not drive our state of minds into darkness. When you have faced death, your whole world shifts and your outlook on life changes for the better. This could be the people you associate with, how you deal with certain situations and just living your best life. You will cut people out, you will want to face your fears and just appreciate every minute you breath this air on earth. Being a survivor also means annual check ups, which in turn you have to deal with Scanxiety . Although everything might be fine, the worry of something showing up weighs heavy on your mind and also your body physically. I get no sleep for many nights leading up to my scans, which I am graced with 50 shades of dark circles under my eyes. The future for a cancer survivor can be masked by negative thoughts but on the flip side we want to make the most of the second chance we have struggled to fight for. It's an ongoing battle that we have to live with for the rest of our lives but I will always fight, as will many others! So to be a survivor, it's not luck, it's proof that something was sent our way to kill us but determination, strength, grit and positivity prevailed. Much love Lucy You can follow Lucy on IG @lifeorjustlucyisms Or through her website: Www.lifeorjustlucyisms.co.uk

By Store My Tumor The most common statement we receive from people we talk to is… I wish I knew about the importance of preserving cancer cells alive at the time of my surgery. Why didn't my doctor talk to me about the option of storing my tumor tissue? Doesn't he understand my survival is everything? I have a family that I need to be here for! To answer that question- most doctors are always going to go with the standard of care treatment- surgery, chemo and radiation. They have no time and this is what they are taught to do. Anything aside from that is not known to them and they don’t want to go outside the norm. This is why a patient must take control of their own treatment. If you have a doctor that you feel you aren’t getting the right answers from, then find a new doctor. If you feel your treatment plan isn’t right for you, then ask questions. You need to be a part of your treatment plan so that you feel included in your survival and can help to ensure it. The standard of care is okay for some people but not for all. If you feel you want to take control of your treatment and personalize a treatment that is just for you then you need to do some research. StoreMyTumor can help you preserve your cancer cells and tissue alive and initiate a number of advanced diagnostics and personalized immunotherapies for example. Did you know? Hospitals routinely discard tumors post-surgery, or they may save a very small piece of the tumor preserved in paraffin, which will not keep the cells alive. StoreMyTumor preserves your cancer cells and tissue in a live, viable format. Patients can store tissue collected from a surgery or biopsies, or fluid from ascites drainage (paracentesis). Call them if you are having a procedure that may involve removing tumors or cancer cells. What are the preserved live cells or tissue useful for you ask? · Sensitivity Testing (diagnostic) - tests which drug or combination is most effective to target the tumor. Can be done for chemo therapeutic agents only, or a wider range of drugs that include chemo, targeted, and immunotherapy. This eliminates the trial and error process doctors go through and the severe side effects that accompany the wrong chemo and drug. Applies to all indications and requires Viable tumor tissue. · Genomic Sequencing (diagnostic) - checks for hundreds of mutations on the tumor and matches the right drug to mutations expressed by the tumor. Applies to all indications and requires formalin or paraffin tissue (fixed/dead). · Personalized Vaccines (immunotherapy) - stimulates the immune system to recognize and fight the cancer cells. Good to clean the body from residual cancer cells after surgery/chemo. Applies to all indications. Available in trials across the USA and internationally. Applies to all indications and requires Viable tumor tissue. · Adoptive T-cell Transfers (immunotherapy) - multiplies the army of killer T-cells that already recognize the tumor to dramatically boost the immune system’s ability to destroy the tumor. Available in trials across the USA and internationally. Applies to all indications and requires Viable tumor tissue. Personalized medicine is transforming our thinking about designing effective treatments. If you have questions, you can also set up a time for them to give you a call . Knowledge is Power! Know All Your Options! Take control! Thanks to StoreMyTumor for sharing this blog with out community!

By Caitlin Edmunds, Contributing Editor Cancer sucks and there's no denying it. It took a lot from me... it took my energy, my attention and focus on most days if not all days, my naivety, my time and a whole lot of my hair (which in all honesty was one of the hardest parts). But it also gave me a new found appreciation for each and every day. To stop and enjoy all the little things and realize that life is too short to be mad at the crappy driver in front of you or stress over the one email that you didn't get to but meant to before leaving the office. It taught me that the human body is an incredible thing, and the amount of trauma and hardship it can endure and bounce back from is incredible. It taught me that I am way stronger than I ever gave myself credit for. But most importantly it showed me that my tribe is the best tribe. It was 234 days from diagnoses to my last day of active treatment... 130 cold cap changes, 120+ self injections, about 50 doctors appointments, 30 rounds of radiation, 25 blood draws, 20 doctors, 18 ultrasounds, 8 rounds of chemotherapy, 4 lymph nodes removed, 3 MRIs, 2 port surgeries, 1 full body PET scan, 1 CT scan, 1 egg retrieval surgery and 1 lumpectomy surgery. My life will never be the same and forever more will be split into BC and AC (thats after cancer, not Adriamycin for my cancer folks). Since I found my lump through an at home self-exam and have made it my ongoing mission to bring awareness and education to other young women out there. I am so lucky to have found so much love, support and inspiration throughout the entire cancer community, but especially the triple negative gals! Here is a link to my Caring Bridge site that I used to update family and friends: https://www.caringbridge.org/visit/caitlinedmunds/

By Ilene Kaminsky Morning yawns and stretches its arms To part the curtains of night. Tired midwife to light from From her expectant horizon The earth inches towards her morning. Clean, cool fingers weave threads Of sweet perfumed wisteria and more Unnamable long forgotten blooms. Clean and combed through dew damp air. Buds nodding on their stems, Draw blood from my veins with thorns Like cat claws after a scare. Suddenly clouds burst and showers fall To save dry backyards and crops Now cut away from the view unguarded From natures reach over treetops. Lost years and fences already raised Desperate for mending and tattered. Puddled earth evicts worried worms, Plucked by late rising birds from their Broken homes. While in my solitary confinement, Within an escapable white picket fenced Yard, I wave farewell to school busses And to the workers who clean up the world. Alone to remember cubes and corners Push pinned photos, plaques of platitudes, Email boxes and bustling buildings Where tight schedules and bright slides Bore like radiation into the heads of Departments of the thoughtless and benign. My wooden porch now a port of call for Rain long overdue for such late afternoons. I’m stuck in an everlasting April spring day. As sprinklers timed soak the lawn The sun’s last rays motion with Long, scolding fingers at Now unknowable faded faces Trapped like tonight’s fish for supper In this morning’s papers. Laid out on a communal table Where wisdom and innocence Convene to discuss the current Events of still births and deaths. Hands engaged with wild gestures Waving forks and spoons for effect - Interrupting pointless chatter to flatter And cut meat from a fatted calf. Everyone silenced by politeness, Sliced right through the art of the matter. The evening’s news flickers Behind shades of taffeta mmllooookmm Hiding shadow boxes inside windows. Like a sober fly in a glass of whiskey Wet wings legs spinning drowned The hands of its god take it down. I walk with solitude as she unwraps Her arms thick with compassion Beckoning me inside for consolation. Using one wave to cast away Anyone who might see me crying. We sit together on a dark park bench Watching every creature under suburban Skies that all fit on a single broom stick. If no one bothers then no one counts Things yet unseen, like angels Atop a pin head. Yet we must believe That stars still sparkle until the dark unveils Who’s home and left behind To sing unearthly cries of grief. Arched branches bow green Soft leaves shake and flow From willows left weeping While night whispers to me: Please save us all. As the trees fade to black, Wind whips at my face. From the fringes, howls Break into my mind. I can no longer breathe hidden and weak In the between With these heavier things.

By Vicki McDonald I have been living with metastatic breast cancer since 10/13/17.  Diagnosed at age 46 on what I would later learn is Metastatic Breast Cancer Awareness day. I am a Mom of 2 successful adults and 2 teenagers and a Grandma to one beautiful granddaughter. I have found strength and courage I didn’t know existed  while on this roller coaster. Treat. Scan. Repeat. For the rest of my life. I am forever in some sort of treatment to survive. I know I am fortunate. I have made it past the terrifying statistics. I am still  on my first line of treatment. I have found there are advantages of having your mortality looming overhead like a black umbrella- I have been creating messages of love for each child in case I miss out on special events- I want them to forever feel me “cheering for them”.   I have learned to find something that makes me smile everyday. I appreciate nature and friendships so very much. I have made and unfortunately lost many new friends all over the world in support groups , beautiful young ladies stolen from us too soon . We need more research. Less ribbons.  In life it’s not if will be tough, it’s when .  I am not afraid of dying, I fear the  heartbreak of those I will be leaving behind. Have a story to share? We'd love to hear from you! Your voice becomes someone else's thriver's guide! Learn more on how to share your story!

By Abigail Johnston I began my experience with breast cancer in March of 2017 and experienced the pink soaked month of October a few months after we discovered that I’d been Stage IV or Metastatic from the beginning. In October of 2017, I was just weaning myself off of a cane after walking with a walker for some weeks after the surgery that placed titanium rods inside my femurs. It was an honestly a hellish few months and I’d not yet come to terms with having to close my business and trade the life of a busy business owner for the life of a forever patient. I was feeling the loss of so much, a literal loss of identity and I was drowning. I struggled, a lot, with the concept of awareness and the celebrations of survivors who were in the position that I wanted to be in – looking forward to getting back to their life they had before cancer. A few short months prior, that’s where we thought I would be and yet when I was told in June of 2017 that cancer would indeed end my life, all of those expectations were blown out of the water. I’m not sure I can articulate how hard it was to have been told I had cancer, adjusted and assimilated as best I could what would happen, only to be told a few months later that I was terminal. The first time I saw the ribbons splashed all over a retail store that October of 2017, it was the post office and I was still bald or mostly bald from chemo. When I saw the cheerful banner and how the clerks attempted to sell a page of ribbon stamps to each person in front of me, I desperately wanted to leave. But I was mailing something for the closure of the business, something to do with one of the accounts I had negotiated closing early because we’d had to cease operations and I needed it to be postmarked that day, so I gritted my teeth and kept my spot in line. As I made my way to the front of the line, dreading how each person eyed my head, some with clear pity that made me want to punch them, some with weird speculation that also made me want to punch them, and some dismissively …. Yep, wanted to punch them too. I was in quite a mood to eviscerate someone when I got up to the clerk to mail my package. I could see the indecision on her face as she rang up my order, eyeing my head and asking careful questions about what I was mailing and why, and when we got towards the end, she said something about the breast cancer beribboned stamps. Probably whatever was on their script, with a gesture towards my head. It was clear I was a cancer patient to her and she made the question a bit more personal. Despite the seething rage that is still oh so close to the surface, I managed to ask politely how much of the funds I would pay for the stamps would benefit cancer-havers. Honestly, someone should have given me a medal. Gold medal worthy performance, it was. But, after all my restraint and politeness and swallowing of the urge to throat punch each of the people in the post office that day, she didn’t know. She didn’t know if any of the funds used to purchase the pink stamps would benefit anyone except the post office. Even though she was asking me to buy the stamps with some sort of canned marketing spiel about helping those of us with breast cancer, she didn’t know how purchasing the stamps would actually do that. Before you start to think I hate the post office, let me just say that I don’t. I buy stamps regularly and have been horrified at the attempts to undermine the necessary part of our democracy system that the post office has become. I have even received medication in the mail at times during my treatment for MBC, so it’s not the post office itself that was at issue. What was at issue for me is that breast cancer was being used to sell something and, as far as the employee I was talking to was concerned, the benefit to the breast cancer community wasn’t known, wasn’t celebrated, and likely wasn’t happening. She did throw in a few comments about how raising awareness about breast cancer helped people get their mammograms, helped people remember to do self-exams, helped the population at large in some way. That’s clearly not a help to those of us who already have a diagnosis – that distinction wasn’t something that employee thought about nor most that I’ve spoken with since then. And that’s when I lost it. I don’t remember all that I said to her that day, but it wasn’t all that nice and it was intense, at least for me. None of that “awareness” helped me, I actually did find my tumor with a self-exam and I was already Stage IV. I didn’t have any issues getting a mammogram once I felt the lump, but my insurance company wouldn’t have covered it otherwise for two more years because I was only 38. I was tandem breastfeeding at the time I found my lump, and with me having found a lump they wouldn’t have wanted to do the mammogram anyway. None of the platitudes or the marketing spiels or the “awareness” or the pink ribbons every where will help those of us with MBC. The fact of the matter is, approximately 10-12% of us are diagnosed at Stage IV from the beginning despite doing everything those marketing campaigns promote. Then, 20-30% of those diagnosed at an early stage will progress to Stage IV despite doing everything their doctor’s tell them to. When you see the ribbons this October and beyond, please #ThinkBeforeYouPink. Don’t buy a beribboned item just because its October. Check with the seller, find out what will happen to your hard-earned dollars. When you find out that no individual with breast cancer will actually benefit from your purchase, consider taking the same amount of money and donating it to metavivor.org , where 100% of the funds raised are allocated to research that benefits those of us who are Stage IV.

By Karla Mans Giroux My Story: From Cancer to Consciousness – Healing from MBC I consider myself an optimist, a cancer thriver, and a longevity geek (I plan to live to 100…healthy & sane of course!). I’ve had two experiences with cancer…one that is currently ongoing, but I’ve never let it define me. Change me? Yes. Define me? No! The Backstory I was diagnosed with breast cancer in 2003. I was 37 years old and had a 5-year-old and 2-year-old at that time. As you know, or can imagine, it was a frightening time, and while I did my research and took control of my health, I did not make the lifestyle changes that I could have to ensure it never came back. I took a conventional approach and underwent a mastectomy with free-flap reconstruction (a tummy tuck was the silver lining). Lymph nodes were involved, and they found another spot of cancer that was previously undetected. Chemo and radiation were next. I also took Tamoxifen for 5 years as recommended. I believe that my positive mindset helped me make it through treatment relatively easily, despite painful neuropathy in my hands. For me it was pretty much over and done in 9 months and I went back to my “normal” life. Since I thought I lived a healthy lifestyle I figured that was the last I would see of cancer…and I certainly hoped and prayed for that. When I hit my 10-year “cancer-versary” I really felt safe! The Metastatic Diagnosis However, 11 years out from the original diagnosis I found the cancer had metastasized to bone. It was November of 2014, and I had an MRI to diagnose an issue in my leg. Turns out the issue was not in my leg. It was metastatic cancer on the spine that was blocking a nerve pathway which pinched that nerve and caused numbness and collapsing of my leg. The cancer was back, and it had spread all over my bones – spine, hips, pelvis, ribs, collarbone. I did not know how I would survive this, but I quickly returned to my conventional oncologist to work out what could be done. Since it seemed we caught it early and it responded to hormone therapy, I was feeling hopeful. A biopsy was attempted but was not successful. Therefore, the oncologist recommended we treat it as if it were the original cancer - ER/PR+ - and I began taking anastrazole in December 2014. By February 2015 ibrance was on the market and so I switched to letrozole with ibrance. The numbness in my leg receded very quickly and my “leg issue” was resolved. The Healing Begins Since this was serious stuff it called for a lot more than I had done before. I was older and wiser and was not giving up my goal of making it to my 100th birthday! I knew better, and I did better. I left no stone unturned. I hired a cancer coach and she helped me clean up my diet, my home, and my lifestyle. I learned how to manage my stress and take better care of me. I became a very inhospitable host to cancer. The changes to my diet were not drastic for me because I had recently done a real food challenge and eliminated sugar, dairy and processed foods. I also stopped drinking alcohol and eating red meat. I ended up losing so much weight that people feared the worst for me. After a few months, I learned how to eat well without eating meat, refined wheat, dairy or sugar, and I put a few pounds back on. I also worked extensively with a therapist to work on my feelings of lack. I uncovered reasons for that lack and suppressed emotions and worked on releasing a lot. I learned to believe that I am enough just as I am. From Conventional to Integrative Care My conventional oncologist didn't believe I needed to do any of the additional things I was doing to support my health. He would tell me to “go eat a brownie” or “have a margarita”. When I would ask about supplements or things I felt would help me stay strong and healthy, he would tell me I could “waste my money” if I wanted to and referred me to the "Integrative Medicine Department"...which was in a different building two blocks away. Not so integrated if you ask me! I didn’t feel supported in my efforts to do all I could to stay in the best possible health and manage this disease. My conventional oncologist just wanted to put me on the latest drug protocols and leave it at that. I was not comfortable leaving it in the hands of conventional medicine alone. Then In late July of 2016, a liver tumor showed up, so I found an integrative oncologist. I scheduled an initial consultation and liked what I heard. This doctor agreed with the conventional protocol I was on, with a slight tweak, and had so much more to offer. He supported my diet and lifestyle changes but also wanted to ensure that I was on a supplement regimen that would put my body in the best possible state to support my health and beat cancer. I continued ibrance and added faslodex. Within six months the liver tumor was fully resolved! My integrative doctor encouraged me to engage in a more routine exercise plan, provided nutritional support and ran a terrain panel every 4 months to determine what food and supplements my body needed to be in the best health to keep cancer at bay, and he really made me feel like I would make it to my 100th birthday just as I’d always planned. I have felt so supported and feel that I have really found a partner in my health and wellness journey. I am proud and pleased to say that there has been no evidence of disease (N.E.D.) since 2016 (4+ years)! Ok so technically I can only say that about my CT scans since the bone scans are classified as “stable”. They show “scarring”. However, I know that what they see on the bone is just that, scarring. The proof is in the improvement of my “leg issue” and no new growth. I know that a big part of my healing came from the integrative approach that I took and from utilizing the 10 healing factors from the book Radical Remission by Dr. Kelly Turner. When I found the book, I just KNEW that I would live to see my 100th birthday like I had planned. I had already implemented many of the factors – strong reasons, empowering, changing my diet, supplements, positivity, social support, spiritual connection, exercise – check, check, check. It was all life changing and so supportive and inspiring. I believe that we all inherently know what our bodies need, and I wish that others knew this too. There is huge need for integrative care. I became a certified Radical Remission Health coach so that I could help other. I love to share the healing factors, from Dr. Turner’s research, and help people learn that there is so much more they can do to help themselves heal. Never let anyone take your hope.

The Second Time Around By Hilary Hamilton The tricky part with Metastatic Breast Cancer (MBC) is figuring out how to navigate the journey the second time around. In 2015, my diagnosis was Stage 2, with a five-year survival rate of 92 percent. I liked those odds. I knew treatment would be hard, but there was an end in sight. I had 14 chemotherapy sessions, six surgeries, a double mastectomy, and 29 radiation treatments -- all that to be cancer-free. Or so I thought. On January 29, 2020, a CAT scan showed tumors in my lungs, liver, and lymph nodes in my chest. On that day, my old cancer-free life left me and. Aa new one began. I am no longer a breast cancer survivor; I am Stage IV, with a 5-year survival rate of 22 percent. I wouldn't say I liked those odds. It's all I thought about when I woke to the moment I went to bed. Even though my oncologist reassured me that many of her patients live with MBC for years, the idea that this cancer is terminal, robbing me of precious time with my kids, husband, and family was so profound that I felt like I was drowning. With any new pain or ache, I was convinced it was spreading to my brain and bones. In the glow of my laptop, I'd pour over the Internet searching the signs of METS in the brain and bones until the wee hours of the morning. I'd then put on a cheery face, marching forward with a tight smile, keeping it together for my three kids. It's been eight months since my MBC diagnosis, and I've had eight cycles of a targeted therapy drug, Ibrance, combined with Faslodex shots. While fatigue is my new companion, the treatment is more tolerable than before, except for the two giant horse shots I get in my rump every month. I've grown to appreciate the nurses' steady hands as their latex fingers hold the glass syringe for two longs minutes that it takes for each injection. The good news is my treatment is working. My tumors are shrinking, and my latest scans showed the four tumors in my liver are down to one. The lesions that covered both lungs like inkblots are now 65% gone. I can breathe a little easier, literally and figuratively. There are still some dark days where the fatigue consumes me, and I am tired just walking upstairs. I worry that my cancer has become the backdrop of my kids' childhood. I don't want them to look back and remember a mom who was always tired. When I start to spin out, I remind myself that I am not my thoughts. I remind myself that I'm breathing; I'm living. All I have is now, and in this now, I'll listen to the whisper of my soul that says you will be okay . I can live in fear or faith. I chose faith. I am grounded in the reality of my illness, but buoyed by hope. I'm ready to learn what this cancer is here to teach me, the second time around.

By Linda Hansen I never worried about breast cancer. No one in my family ever had it, so I was sure that I was low risk. I got annual mammograms, and they were always clear. None of my physicians ever said anything to suggest that I should be concerned. After all, I was low risk. When I hit menopause and had horrible hot flashes that kept me from sleeping, my doctor suggested hormone replacement therapy (HRT). I knew that HRT increased the risk of breast cancer, but the doctor said I should try it. After all, I was low risk. Soon after starting HRT, the hot flashes stopped, and I was soon sleeping again, and able to function. I wasn’t worried about HRT’s impact on breast cancer because I was low risk. Two years passed on HRT, and I kept getting annual mammograms that were clear. I didn’t worry, because I was low risk. I tried to do some exercise and eat reasonably well as I got older. Then again, I live in a state known for deep-fried cheese and bratwurst. Even so, in May of 2010, when I was 54 years old, I decided to try jogging. I was surprised to note that every time my right foot hit the pavement, I felt a brief pain in my right breast. I wondered what it was, but because I was low risk and I’d had a clear mammogram just five weeks earlier, I didn’t worry about breast cancer. When I got home from jogging, I checked my breasts while in the shower. I didn’t feel anything unusual, but that was expected since I was low risk. I got out of the shower, and as I applied deodorant, I noticed that a dent appeared in my right breast as I raised my right arm. When I put my right arm down, the dent went away. I was sure that it wasn’t breast cancer, but I was curious about what it might be. Rather than doing a typical exam as instructed by my doctor, I squeezed both breasts from the sides. I noted that the right breast seemed denser than the left. Although I knew I was low risk for breast cancer, it was time to call a doctor. The following morning I met with my gynecologist and explained my symptoms. He did a breast exam, and I showed him how I found the density. He said he could feel what I described, and told me he would be right back. I wasn’t concerned, after all, I was low risk for breast cancer, but I was curious. The doctor returned a few minutes later, holding a piece of paper. He handed the paper to me and told me that I had an appointment with a breast surgeon Monday morning. The paper contained all of the details. Although I was low risk for breast cancer, I was starting to get concerned. I didn’t tell anyone about what was happening with me, as I knew my family and friends might worry even though I was certain that I would be fine. Monday morning I went to the hospital to meet the breast surgeon. She examined my breasts and told me that I needed an MRI. The hospital would not schedule the MRI until they were sure my insurer would pay for it. For three weeks my doctor argued with the insurance company about the need for an MRI. Finally, it was scheduled. If you’ve never had a breast MRI, you’re missing a real treat. A wooden structure was placed on the “bed” of the MRI. It looked like a cornhole board but had two holes across the top rather than one. I was told to open my hospital gown and lie on the board so that my breasts hung through the holes. A tech reached underneath and tugged on my breasts to get them in the position that she wanted. I’m from Wisconsin, so I’ve spent time on a dairy farm at milking time. As the tech pulled my breasts I did the first thing that came to mind: I let out a long “Moo!” My breast surgeon hung the MRI film on the light box at my next appointment. I didn’t need any medical training to know that something was wrong: one breast appeared nearly black and the other appeared white. Looking at the films, I asked “Other than breast cancer, what could this be?” She responded bluntly. “I think you have breast cancer, but I can’t be sure until I biopsy it.” I was stunned. Didn’t she understand that I was low risk? This couldn’t be right. But eventually I learned that breast cancer doesn’t care if you’re low risk, and low risk doesn’t equal no risk. Life as I knew it quickly changed. I was diagnosed with stage IV breast cancer in June of 2010. I opted for aggressive treatment and more than 10 years later there is no evidence of disease on my scans. I’m doing well and enjoying every day. Carpe Diem !

I was 39 when I was diagnosed with breast cancer -Stage II infiltrating carcinoma and 49 with breast cancer -Stage IV metastatic breast cancer. It was May 2010 when my world was shattered. I had divorced my husband the previous year and felt totally free for the first time in my life. I was healthy, loved to exercise, and was eating healthy on most days. I was working as a nurse in a pediatric office in Littleton, Colorado. My son was a couple of years away from graduating high school. Life was great. I have a family history of cancer and I started performing self breast exams in my twenties. In April 2010, I felt a lump in my breast and saw a dimple over the spot where I felt the lump. As a nurse, I knew the signs and symptoms of breast cancer, but for some reason my mind wouldn't accept it. As I think back, I felt like I couldn't have breast cancer because I didn't have health insurance. After the divorce, I couldn't afford it. But God made a way. I qualified for Komen funds, which saved my life. I was blessed to have the best surgeon and oncologist on my team. They gave me all the information I needed to make an informed decision. Sadly, I was miles away from family and friends, so I went into deep prayer and made the decision to have my breasts removed. As I sat on the exam table and told the surgeon my decision, I felt strong and sure. But as soon as he exited the room, I broke down and cried. It wasn't fair. I was the girl who raised awareness for breast cancer survivors, and now I was that girl. Ironically, five years later, my sister would insist that I write a book detailing my journey. I hesitated in doing so because it was my personal business, but she hit me with, "It's about giving God the glory." So, I self-published the book, "Seriously God, Am I That Girl?" Writing the book ended up being my therapy. I poured out all the details regarding chemotherapy (its side effects) and my reasons for stopping it and stopping hormone therapy as well. I completed two of the four rounds of chemo and stopped tamoxifen after a few months. On chemo, I felt like I was having a heart attack, and regarding tamoxifen, I just didn't like the side effects. I did end up removing my ovaries. In 2012, my PET scan was clean, and I moved to Atlanta to be closer to family. I found an oncologist and in 2015 was given the "all clear." I was determined to take advantage of my second chance at life. I worked and traveled to many places that were on my travel list. Since I loved traveling so much, I became a travel nurse. Again, life was great! I took an assignment in Dallas and Tucson. While in Tucson, I had this feeling of wanting to help women in a different way. I was ready to leave nursing after twenty years and try something new.  I love my family, but moving back home was not part of my life plan. We have our plans and God has his. So, in September 2019, I moved back home to Mobile and opened a painting studio, Her Timeout, in January 2020. The stress I was under opening this business saved my life. A lymph node in my neck began to swell. This one symptom would lead to an urgent care visit, PCP visit, scans, oncology visit, and a biopsy. The result, stage IV breast cancer. I was ready for God to take me. I couldn't. I didn't deserve this. I was a good person and this wasn't fair. My family was so concerned that they threatened to come break into my apartment if I didn't come out. After two weeks, I started chemo. My new oncologist had read my old medical records and he was ready for me. No quitting. He was stern. He told me that he could treat me, but I had to do my part. I wanted to see my future grandchildren, so I put on my big girl panties. I was ready this time for the side effects. I started taking daily vitamins, B vitamins, plain, coconut milk yogurt, raw garlic, and drinking plenty of water. I meditate and do yoga. This time around, I'm grateful to be home with family and friends. Instead of writing another book, as they suggested, I decided to blog about this journey. The title, of the blog is "Her Timeout." I honestly believe that when God gave me this name back in Tucson, it was not intended for a painting studio, it was his way of getting my attention to slow down. He was trying to save my life. What's next? I have to complete 6 rounds of chemo; less if my scan comes back clean, per my oncologist. Then monthly, hormonal injections until my oncologist "says so." I'm ready to walk in divine health because I deserve the best. I'm focused on healing my body and getting back to life! There's a big world out there to explore. God placed a work in me when I was born, and I must continue my journey to fulfill my purpose.  I have too many dreams to give up!

By Kandace From Survivor to Conqueror I ate well. I didn’t smoke. I didn’t do drugs. I was a marathon runner. I was too healthy to be sick…. March 2011 It was one of those California mornings: overcast and gloomy. When I looked outside, I saw that it was actually raining…Oh well I thought… It’s just going to be one of those days…There’s no way it could get worse…Boy was I wrong. ​ You see, I belong to an unique club…Where One out of three people in the USA belong to… but it’s a membership no one wants to be a part of… that you cannot quit from…and I don’t want YOU to be a member of… Today I am going to share with you all how I received my club membership, my connection with the doctor and club life... ​ I was training to qualify for the Boston Marathon. My training was tapering down and I was still tired. That same week I found a bump under my armpit. I made an appointment with my doctor. She ordered a complete blood panel. It came back ok. She ordered a mammogram and an ultrasound. I had to beat a specific time at the Napa Valley Marathon to qualify for the Boston Marathon. I put my heart and soul into it. It was one of the most important things in my life. I trained hard, ate well, slept well, and avoided unhealthy things. I didn’t smoke. I didn’t do drugs… That weekend I ran the Napa Valley Marathon and qualified. I was on cloud 9! I was indestructible. Discipline, Determination and Drive as my father would say! My life was running like clockwork. But… I made my appointments with my doctor. After a complete blood panel, followed by a mammogram, an ultrasound and a scan my world turned upside down. I remember walking into a hospital in Orange County for my appointments. Never worried. Never scared. I ate well. I didn’t smoke. I didn’t do drugs. I was a marathon runner. I was too healthy to be sick…. My scans were completed and I was waiting for the radiologist to tell me, “All clear. Have a nice day. ” … But instead, he came out and told me I needed to come back for a biopsy… Now I was scared! What was wrong? Cancer still had not crossed my mind. The following Monday, I went in for the biopsy and that Wednesday I would find out the results. Wednesday, March 23, 2011 was an unusual day…. It was pouring rain in sunny Southern California. It never rains here. My mom and I were called back into an exam room; we waited and waited and waited. I paced the hallway…. I found a nurse and asked her if she had the results from the biopsy. She came into the room and crushed me. “Kandace, I’m sorry. You have stage II breast cancer.” I said, “That’s not possible. I am only thirty years old. I just ran the best marathon of my life.” Mom and I immediately went into crisis solving mode. A family friend had been diagnosed six months earlier, so mom knew what oncologist and surgeon to ask for….I met my surgeon that evening and my oncologist two days later. My path of life was forever changed! I had no idea what was going to happen to me, but I knew in my soul that I was going to live: determination, discipline and drive. In the months to follow, I underwent a lumpectomy removing seventeen lymph nodes, seven of which were cancerous, had twelve rounds of chemotherapy, a blood transfusion, capillary leakage in my lungs, eight months of prednisone, thirty-eight rounds of radiation, ongoing physical therapy for my arm, four years of hormone therapy, and all of the complications that came along the way. I was knocked down over and over again, but I always stood up, brushed myself off and kept fighting. Failure was not an option. As the months of treatment were further and further behind me, I became stronger – physically, mentally, and emotionally. I had a great support system; in fact, I still do. I began working full time again, traveling and living life again. I was strong. I was going to live. I had a new reality! I was a young breast cancer survivor! I continued seeing my oncologist and having my yearly scans, which were always clear. Always something to celebrate! I reached my five-year cancer free anniversary and boy did we celebrate! I had a party with family, friends, and clients to rejoice such a big milestone. Six months following my five-year anniversary I felt normal in my new reality: working, running, and of course traveling. Friends would often tease me and say, “Kan, your suitcase is always packed. Where are you off to now?” I’d laugh and excitedly tell them about my next destination. September 2016 I suffered from edema in my left arm due to the lumpectomy in 2011. I had, and still have, a lymphedema treatment on my arm three times per week to keep the swelling down and to keep the scar tissue to a minimum. It is not my favorite treatment because it hurts when the chiropractor breaks up all the scar tissue. It was my normal 2pm time slot… At one of these regular appointments in September 2016, however, we found a bump in my chest…. I was not concerned given the PET scan six months earlier… Needless to say, it needed to be addressed. I called my oncologist and we set up an appointment to have the bump biopsied…. The results came back negative for cancer, but given my health history we did another scan. I remember sitting on my parent’s deck with my dad having a conversation about my current situation. I said, “Dad, I can handle whatever this is, I just don’t want to look like a cancer patient again”. He said, “I know Kan, I know.” I will never forget the day I met my mom and three of her closest girlfriends at the imaging center. We were telling funny stories - giggling and laughing. I was called back to have my scan. Half way through, the power went off. I had two options: come back another day or drive across town in rush hour traffic. The five of us hopped in the car. Finally, the scan was completed. I called my doctor and he said he would call as soon as he had the results. One can imagine my level of anxiety. My doctor called…. I answered the phone praying for good news. “Hi Kandace, It’s doctor A”. I’m sorry. I have bad news. Your cancer is back and you have tumors all throughout your body. The good news is that the cancer is the same cancer you had before, therefore it is treatable. I’ll have my nurse call you in the morning to get you in to go over all the details.”… I said, “Ok, thank you.” I hung up the phone, staring into nothing… I began having a conversation with Lulu, my golden retriever. “Lulu,” I said, “I can have my meltdown now and we will still have to retake the exam, or I can keep myself together, take the exam and then have my meltdown.” I took Lulu’s advice. I finished the exam and passed! Later, I threw myself on the floor next to Lulu and had my meltdown. “How could this be happening – to me - yet again?” …Why is this happening again? Moving forward with my new diagnosis, I was able to secure second opinion. I scheduled an appointment with Dr. James Waisman at the City of Hope. I had an instant connection with him and knew he would be my guide to remission. Dr. Waisman made me feel safe. He was direct and thorough when talking with me. I knew City of Hope was the right place for me. I would be on ten months of oral chemotherapy and shots to create remission. Since my cancer was estrogen positive I made the decision to have my ovaries removed. This was the best decision for my body! Exercise and nutrition absolutely play a vital role in keeping the mind and body healthy, But I felt my body needed extra support. I enjoy running on the beach. Strength training is a must for me; it keeps my bones strong and reduces stress. Yoga is great for the mind. I currently take daily supplements based on my blood work and receive weekly IV’s of vitamins and minerals. Being diagnosed with cancer two times as a young female is hard to imagine, and even harder to imagine that it would spread throughout my entire body after I had won the first round. I was thirty years old the first round and thirty-five years old the second round. I often wonder why me, but I always go back to the recognition that cancer is an indiscriminate serial killer without a conscience or morality. I am a positive person and believe the glass is half full. I continue my healthy lifestyle habits: training for half marathons, strength training, frequent infrared saunas and a clean diet, within moderation of course. My life is about balance and purpose: I travel the world because it makes me happy; I spend time with family and friends because I love them; and, I enjoy my career because I help people. I know in my heart that cancer would not have been put on my plate, not once but twice, if I wasn’t strong enough mentally, emotionally, and physically to handle it. Maybe I was meant to have this journey to help others who were going to be walking in my shoes. Maybe I was meant to have this journey to learn to love myself with compassion and grace. Maybe I was meant to have this journey because it was just the cards I was dealt. Maybe there is no reason. Maybe the decision I made to fight, whatever the obstacle or hardship, was the reason in itself. I can’t say that what I did was for others, but I truly hope in my heart that people that are in the fight can see my journey that I stumbled through as a beacon in the dark. Thank you all for being here! A big special thank you from the bottom of my heart to Dr. Waisman, his nurses and the City of Hope team. I am in remission once again and back living a meaningful and joyful life, running half marathons and traveling to new and far off destinations. If not for the discipline, determination and drive City of Hope has to treat and cure cancer, I may not be standing before you today, sharing the hope and healing I received at City of Hope.​ ​Every club member is unique and so is the connection they have with their doctor. Life in the club is theirs to manage (handle) ?... But I choose to be positive and hopeful…I believe in HOPE…because HOPE springs eternal…I use to have “Long Term” goals…now I have “SHORT” term goals! I use to think I am and was a “Survivor” of cancer…but now I believe and think I am and will be “CONQUERER” of cancer. ​I believe in the triumph of HOPE… over past experience!

By Liz Brown Where’s the Scoreboard? Is there anything better than a 10 year old parks and recreation baseball game? As I hobbled to my favorite lucky spot behind home plate equipped with a cooler full of water, Gatorades, and snacks for my favorite players, the excitement was in the air! Two teams on a field of dreams, as they say, playing their best baseball - a fight to the end. Unfortunately, maybe more so for the hard core parents than the kids, there will be a loser in this fight. But there will also be a winner!. One of the teams' players will jump for joy at the end of the game celebrating all the way home and the other will go home wondering what they did wrong. Oh wait, a close second to a battle on the baseball field are the sounds of Friday night lights on a small town high school football field. High school football players work tirelessly through the summer to prepare for their battles on the field. The cheerleaders show their support as the stands erupt after a long touchdown pass or a pop of a tackle heard from the top of the stands. The ups and downs of the game keep the fans watching every play intently. The band plays and the fight continues. Four quarters goes by in a flash (well, for us die hards) and again, there will be a winner and a loser of this full on fight to the finish. The loser will go to the locker room with a probable lashing from coaches as to what should have happened on the field to prevent the fumble or how missing that one tackle gave up the winning touchdown while cheers echo from the locker room as the winning team celebrates. I come from a long line of sports fanatics. My grandmother (who we affectionately called Meremere) would have one game on the tv in her family room,one on her small black and white tv in the kitchen, and one playing on the radio in the kitchen. My dad has never missed a golf tournament or a college football game. I have watched my three boys play countless games from elementary age to high school and my youngest, well, his ipad constantly beeps with updates from every MLB game while Sportscenter is a morning staple. We are used to winners and losers. We understand fighting to win a game. We understand, in losses, that game film is a must in evaluating what was done right in the game and how to evaluate what was done wrong. Cancer is not a game. There are no winners or losers. When I hear that I am fighting cancer, I can’t help but think to look for a scoreboard to see how much time is remaining in the game and thankfully, there is no scoreboard. I immediately shift my thinking to how can there be a winner and a loser in a disease? Often, we hear “she lost her battle with breast cancer”. Lost? What? I hear lost and immediately think, well, who won? What could have been done differently? What did we do wrong? Let’s look at this from a mathematical standpoint. The old adage of “keep fighting, you’ve got this” leads us to the conditional statement that “if we fight hard enough, then we will win this battle against cancer”. From geometry class, you recall (were you listening that day?), that the contrapositive of a conditional statement is always true if and only if the conditional statement is true...sorry had to get my math lesson in for the day-shout out to my math department in Manteo! In following that logic, the following statement would be true, “if we do NOT win the battle against cancer, then we did not fight hard enough”. Hmmmm, is that really what we believe….absolutely not. No matter what the age and no matter what the stage of any cancer patient, you can be assured they are doing everything they possibly can to do for what is best for their body, their family, and themselves. And furthermore, while I’m on a roll, why is cancer the only disease we “beat” or “fight” or “lose to”? I have asthma and no one says I am fighting it; no one says those words in conjunction to diabetes, epilepsy, heart disease, etc. nor should they. There is an implication of weakness or something that could have been done better when we use the word “lost”. We should never use such negative associations with someone who has died of cancer. In fact I read once where it was written in an obituary that she “won her battle with cancer as she joined the Lord in heaven.” So much better and much more accurate! In the beginning, I mentioned that I hobbled to my seat for the baseball game. A few weeks later, I found out that I had a compression fracture in my back at T9 - I guess that explains the hobble. The doctors could not figure out how I had fractured my vertebrae. I was otherwise a healthy and active 46 year old just running around juggling teaching and crazily chasing three boys with my husband. They could not figure it out until my regularly scheduled mammogram came back looking suspicious. And, as they say, the “you know what” hit the fan. In less than a week, I had a bone scan, a biopsy on my breast, kyphoplasty, a biopsy on my T9 vertebra, and multiple other scans. I went from teaching high school math one day to hearing the news of being diagnosed with metastatic breast cancer to my bones the next. Meta-who? My mom and I practiced saying the word and spelling the word. I didn’t even know how to pronounce metastatic much less understand what in the world it all meant. I was definitely in shock and to be quite honest, none of it registered until I asked my primary doctor, “Would I be teaching this year?” She quietly replied, “no” and then I understood that this was something big and unwanted. I started my 4 week regiment of the “red devil” chemo and 12 weeks of Taxol chemo within a week of diagnosis. I followed up with a lumpectomy and 20 rounds of radiation on my breast where the tumor had emerged. I started on Kisqali among all sorts of other medications but my liver was too sensitive to the Kisqali and I have had to since change to Verzenio. I am a year and a half into my story (not a journey to me because a journey is supposed to be fun). Metastatic disease is a roller coaster with oncology appointments every month, at the minimum, and scans every three months to make sure the cancer has not spread further. Every medication has its own side effects which is really fun in itself. I don’t want to ever look back and think about how I could have or should have done things differently. I will never lose because it is not a fight, it is simply a new lifestyle…..okay fine, some days I have to be stronger (look out Darana, my other soap box word) than others but I know that no matter what I win! I always win! I have a long road ahead and my new “job” is to take care of myself and my family, steer clear of stress, and go to as many ball games as I can so I can enjoy looking at a real scoreboard and smile no matter if we are on the winning side or the losing side. Now, if you’ll excuse me, I need to go pack my cooler! Liz Brown Manteo, NC I’m hoping to share my story and resources to help you or someone you love calm the waves in your crazy cancer storm. *****Blog/website: www.mbcoutlier .com *****Instagram: mbcoutlier

By Kathleen Friel, Ph.D., March Is Cerebral Palsy Awareness Month I have the interesting opportunity to live with two types of medical issues – cerebral palsy (CP) and metastatic breast cancer (MBC). CP is usually a condition that a baby is born with or acquires during the first two years of postnatal life. CP is most often called by a stroke or brain bleed – yes, babies and kids can have strokes, even in utero. Sometimes, CP is caused by malformation of the brain or a genetic issue. The bottom line is that the brain damage resulting in CP causes movement challenges. Sometimes, people with CP also have challenges in sensation, vision, hearing, speech, and/or thinking. I was diagnosed with CP around 1.5 years of age. The diagnosing neurologist told my parents I had no rehabilitative potential, and that the best life for me (and them) would be if they put me in an institution and focused on my soon-to-be-born brother. Thankfully, they found a new doctor for me, pronto. The wonderful doctor who guided my family through my first years of life was funny (he never wore socks, something that my four-year-old self found hilarious) and encouraged my parents to treat me like they’d treat any other kid. Sure, I had plenty of surgeries to make my legs walk better, speech therapy that enabled me to order pizza during college, and physical therapy that enabled me to stroll the mall with my friends in junior high. When I was prescribed occupational therapy in first grade, I figured it must be time for me to begin job training. Little did I know, OT is a discipline that focuses on improving finer motor skills like typing, cutting up food, and fastening buttons. I now run a clinical research lab at the Burke Neurological Institute in White Plains, NY. Soon after I got my PhD in neurophysiology, my dad tried to track down that neurologist who had given me such a grave prognosis. No luck. I would have loved to see his face when he learned that I indeed spend most of my time in an institution… running a research program! Greater Awareness is Sorely Needed My multi-faceted relationship with cerebral palsy (CP) gives me a rather unique perspective on CP awareness. The mission of my lab at BNI is to develop novel therapies for people with CP that are rooted in a deep understanding of the neurobiology of CP. Through our research, I’ve gotten to know hundreds of children and their families as they navigate life with CP. For those who have only ever met me over Zoom, now you know, it’s not my audio connection that garbles my speech, it’s CP! These perspectives all converge to one theme: greater awareness is sorely needed. Approximately 3 in 1,000 people have CP, which translates to approximately 800,000 people in the United States, and over 18 million people worldwide – approximately 50-50% split between children and adults. To put these numbers in perspective, 800,000 people is equivalent to the population of Seattle, and 18 million individuals is equivalent to the population of the state of New York. The Demand for Cerebral Palsy Research Recently, research has demonstrated molecular and cellular consequences of CP. People with CP typically expend 3-5x the energy of their nondisabled peers to perform activities of daily living. Muscles and bones in people with CP have less of an organized structure than in nondisabled peers – interestingly, some of these structural differences occur before a baby shows motor symptoms of CP. This raises the possibility that muscle and bone cellular disorganization contributes to the development of motor symptoms, rather than emerge as a consequence of aberrant movement. Much research is necessary. The work in my lab is focused on improving movement in school-aged children, to help kids gain more skillful movement ability, which then poises them to improve their confidence, quality of life, and independence. More work is needed to define early biomarkers of CP: despite most brain injuries occurring before or near the time of birth, kids are often not diagnosed until or after their first birthday. If we can diagnose early, we may find ways to intervene and prevent emergent impairments. We also need therapies to help adults with CP age well – many adults with CP develop age-related conditions like osteoporosis decades before nondisabled peers. Adults with CP 3x more likely to get MBC than people without CP, as I’ve learned in 2018, “ Unstoppable: How Dr. Kathleen Friel has made incredible accomplishments despite cerebral palsy and metastatic breast cancer ” ! Although CP is not a progressive neurological disorder, adults with CP experience greater pain, fatigue, and loss of mobility earlier in life than adults without CP. Going Beyond the Science Greater awareness about CP must go beyond the science. What’s it like to live with CP? I’m only one person, and my experiences do not generalize to all people with CP. Here’s a bit of my perspective. People often assume I have a cognitive impairment because of how I speak. It’s exhausting to deal with misperceptions. 2020 was a great year for avoiding unsuspecting strangers! By far, the most difficult aspect of my CP is my speech. Zoom chat is amazing, and trying to be understood while I’m wearing a mask is frustrating. Most importantly, people with CP – and other disabilities – want to be known as people. We have rich social lives, hobbies, favorite sports teams, and so much to offer. We’re more than the way we move or talk. Did you know…? People with CP and other disabilities spearheaded landmark legislation that protects the rights of people with disabilities, including the Rehabilitation Act and the Americans with Disabilities Act. The movie Crip Camp shares their story (available on Netflix!). In one part of the movie, people with disabilities held a sit-in in Sacramento to fight for accessibility in the 1970s. At one point, the disgruntled police shut off the phone system, so people could not call their supporters outside. Shortly after, some deaf participants went to the windows of the building and used sign language to communicate with the people outside. The police couldn’t stop them, and eventually conceded! The MBC Connection I was diagnosed with MBC in 2018, with a lesion in my spine. I think that the joint pain and mouth sores caused by my treatment exacerbate my CP impairments. Some days, speaking clearly and moving freely are quite difficult. I’ve needed more accommodations, and my fatigue (already a “CP issue”) can be frustrating. I have a wonderful oncology care team, but sometimes nurses, radiology staff, and others can make annoying assumptions about my cognitive capacity. Even answering, “Who is with you and how did you get here?” with, “Nobody, and I drove my damn self,” can be that “one more thing” that zaps my last nerve. I usually don’t say damn, but maybe I should! We all know how deflating it can be to go to our appointments, wait forever, get poked and prodded, literally eat/infuse poison in hopes it will only kill the cancer calls, and listen to that bossy little “Breathe in, hold your breath………. breathe out,” CT scanner voice. After that, if someone insists on taking me out to my caregiver, I want to throw a punch. But there is always hope. In December, a radiologist really pissed me off. A kind nurse asked me what was wrong, and I started crying. I pulled up my “Unstoppable” article, linked above, on my phone and gave it to her. Then she started crying! She asked permission to share it with the radiology department. I went for my next CT, and everyone was all smiles and pats on the back. I saw the same nurse, and she gave me a big hug. Many people with breast cancer have other health issues. I’m grateful for the opportunity to share my “CP + MBC” story during CP Awareness Month. We all have a complex identity, and the greatest gift we can give each other is compassion and kindness.

#FeatureFriday “You get shown the light in the strangest of places if you look at it right” (Robert Hunter) I have just finished reading Mother, American Night and was struck by the humor, warmth and love laid bare by the author. So I had to pass along these words of wisdom to our breast cancer community: in this heartfelt autobiography J.P. Barlow opines “After Cynthia died I was forced to decide whether the universe was senseless and cruel or actually had a purpose...I realized the physical world exists so that love can make sense, because without the frame of fear and doubt and suffering, love is effortless and meaningless.” Over the last few months it has been our great pleasure at survivingbreastcancer.org to be working with and hosting livestream webinars with Abigail Johnston and her many friends in the Metastatic Breast Cancer Community. Subject matters include palliative care , anticipatory grief, hospice, end of life , death doulas , and making talking about death less taboo. Abigail maintains that “to grieve means that you have loved”. Truer words may never have been spoken. Surely who doesn’t recall Tennyson’s proverb that “Tis better to have loved and lost than never to have loved at all” where he is clearly elucidating on the theme that experiencing love in life is worth the pain of losing it. Psychologists and philosophers have tangled with the notion that life was just a dream since and before the time of Descartes who wondered aloud whether the world we experience while awake might itself be a dream. Some point to the permanence of objects as the antithesis of this thought while scientists have a rebuttal argument that solid matter is actually made up of empty space. I’ll end with another enduring phrasing from Robert Hunter: “It all rolls into one and nothing comes for free, There’s nothing you can hold for very long, And when you hear that song come crying like the wind, It seems like all this life was just a dream”. Much love to all of you... Feeling Grief and Loss While You're a Caregiver It's OK to cry or admit that you're angry or frustrated. These are helpful ways to keep pent up emotions from turning into resentment toward the person you care for or from taking a toll on your health. You can't avoid what will happen, but you can have a say in how it happens. Learning about your loved one's condition is one way to do something, to have a sense of taking action that puts you in the game rather than merely watching from the sidelines. Get a better idea of the symptoms, treatment options, and possible side effects so you can prepare for and even get ahead of what may be coming. Disenfranchised Grief: When No One Seems to Understand Your Loss No matter what type of loss you’ve experienced, your grief is valid. Still, society often fails to acknowledge some types of grief, making it challenging to express your sadness or begin to navigate the healing process. Disenfranchised grief, also known as hidden grief or sorrow, refers to any grief that goes unacknowledged or unvalidated by social norms. This kind of grief is often minimized or not understood by others, which makes it particularly hard to process and work through. I Found An Unexpected Way To Process And Survive My Acute Grief: Texting A Stranger Kim and I were a few months deep into our electronic friendship at this point. A mutual friend, David, introduced us by text because he believed we should chat. He knew that my life was in a tailspin, and that about nine hundred miles north of my home, Kim was also flailing. He also knew we were both juggling things he couldn’t grasp ― single parenting while grieving. So, who better to understand than a total stranger, right?

You’ve just learned that you have breast cancer. You’re overwhelmed with emotions, questions, and fear. There’s so much to deal with, so much to consider, and so many decisions to make. One of those decisions is who you’re going to share the news with, at what point you might want to tell them, and if you even want to let them know at all. You might be concerned about upsetting people and dealing with having to console them. Telling friends and coworkers you have breast cancer can also make it more real to you as you say the words "I have breast cancer" out loud. Who you share it with, how you share it, and when you share it is all up to you. Sharing news about your breast cancer diagnosis is complicated and can potentially create almost as much stress as the cancer diagnosis itself, at a time when one of the last things you need is more stress. There’s no easy or right way to do it, and you don’t have to tell anyone if you’d rather not share. If you decide to tell friends and coworkers, it’s not just about breaking the news of your diagnosis; it’s also about managing the seemingly never-ending tsunami of questions regarding surgeries, treatment, test results, etc. However, knowing some of the questions you might encounter, and possible reactions you might get can be helpful. How to Share the News Who you share it with, how you share it, and when you share it is all up to you. It’s all about what you’re comfortable doing. It’s most likely going to be an emotional conversation, so it can take a lot of time and energy, which can be draining. If you’re telling people individually, either in person, by phone, or by email, you may find that you’re only able to handle a few “reveals” at a time. Some people choose to share the news on social media to avoid repeating the story with individual phone calls or meetings. Other people may be uncomfortable splashing their private life on the internet. People may worry that a broad announcement of their diagnosis will cause them to be treated differently or fear that the news will jeopardize their job or health insurance coverage. Potential Reactions Once you let the proverbial cat out of the bag, you can expect a host of responses, some of which may be difficult to handle. It’s understandable that you worry that every time you tell someone, they will stop seeing you; that you’ll become a “cancer patient” in their eyes. Remember, cancer doesn't define you, you’re still you! And because the news is so emotional, you may also get sad eyes and tears, hugs, confusion, etc. Sometimes, it can just be too much to bear everyone’s sadness, no matter how well-meaning. We all have those awkward stories when someone responds to our news in ways we just didn't even imagine. (Like the time a friend was trying to relate and find common ground by telling me she had an aunt that died from breast cancer). Many people will ask how they can help, so having a list of things you may need help with—meals, transportation to medical appointments, child care—can be handy. This isn't just lip serves, people genuinely want to help and they are looking for you to let them know what you need! It’s also perfectly acceptable to tell them you will let them know if you don’t have a list prepared. Additionally, it is helpful to spread out the support over the next few months. While there may initially be an overwhelming outpour of love and assistance, ask someone to put it in their calendar and to reach out in 30 or 60 days. You'll be glad you did! Others may say or do the wrong thing, not because they’re unkind, but simply because they don’t know how to respond. Try not to take these reactions personally, and instead focus on those who can give you the support you need. One thing you can count on is that you will probably encounter various responses to your news. It’s often unpredictable and sometimes shocking, but a few common reactions might include: Compassion and Support Some people will immediately offer their unconditional love, compassion, and support. It’s a welcome response. Yes, that’s wonderful, but it can also be a bit overwhelming if they instantly launch into control mode. Abandonment Some friends may disappear when learning that you have breast cancer. In one survey, as many as 65 percent of survivors said they had friends or relatives who cut contact or pulled away from them after being diagnosed, It’s a painful reality to face, but it happens. We all have limitations, and for some people, they include harsh reactions to the news that a friend has breast cancer. Survivor’s guilt, fear, helplessness, and denial cause some people to back away from bad news . Some people are just awkward and are afraid of saying the wrong thing, so instead, they go AWOL. The behaviors that cause people to become MIA can also be because of their deep-seated issues. It may be an excellent time to consider seeking new relationships in support groups or deepening relationships with friends who did stick by you. Inappropriate or Hurtful Comments Sometimes, when people are faced with fearful things, like the possibility of losing a friend to cancer, their brains go temporarily crazy and say stupid things. They’re not thinking clearly because they’re worried about you, and their responses aren’t meant to hurt you. You may hear: Various crackpot theories about how you can cure cancer with Tea Tree oil, baking soda, or by dancing naked in the tulips, you get the drift Similarly, comments and articles about the link between breast cancer and hair dye or that one time you got gel nail tips Unsolicited critiques about your treatment choices Criticism about your decision to not go broadly public about your diagnosis, with some people chastising you for keeping quiet, implying that your silence is not helping other women Cataloging a list for you every person they know of who died of breast cancer Telling you how “lucky” you are to have received a “gift” of breast cancer General invasive questions, such as “What are your odds?” We know firsthand that disclosing your diagnosis can be daunting. Our events, webinars and programs , and most of all, our community is always here to help you with those conversations and more.

The holiday season can be a magical, joyous time of year. There’s nothing quite like the period from Thanksgiving (for our friends in the U.S) through New Year's Day (to our friends around the world!) that generates feelings of warmth and togetherness. There’s a level of excitement in the air, and expectations are high. But the holidays can also be overwhelming for some people, creating added stress and pressure. It can be an especially difficult time for cancer patients, survivors, and caregivers who may be managing treatments, side effects, medical appointments, and the all consuming psychological and emotional toll of a cancer diagnosis. There isn’t a one-size-fits-all strategy. No matter what your situation, i.e., coming to terms with a recent diagnosis, going through treatment, or trying to adapt to a ‘new normal’, here are a few tips that may help you successfully navigate the holiday season and enjoy it! Be Kind to Yourself Accept that things may be different from your past holidays. You may not feel up to some time-honored traditions. That’s okay. You may have been the queen of over-the-top holiday celebrations in the past, but now you’re not even sure you can prepare a meal or wrap gifs. Sure, it’s frustrating not to do everything you did before, but try not to beat yourself up about it. You’ve had a challenging time. Be gentle with your post-cancer self. Communicate Your Needs Your health comes first. If your breast cancer makes it difficult to plan and implement the things you usually do for the holidays, let your loved ones know. These are people who love you and want the best for you. They will be happy to fill in for you. You may not be able to host the annual holiday get-together this year. Have guests bring a dish for a potluck type of meal. Use disposable plates and utensils (with apologies to the environment). Or ask another friend or relative to host the event this year. Adjust Your Expectations Even without dealing with breast cancer, everyone has a vision of the perfect holiday. When the holidays fail to measure up to our expectations, disappointment and stress can steal the season’s joy. Let go of the illusion of the ‘perfect’ holiday. Focus on what’s important, which means connecting with loved ones, being grateful, and looking forward to a new year. If you usually travel to spend the holidays with loved ones but cannot due to treatment side effects like fatigue and nausea, visit via a video chat service such as Skype, Zoom, or FaceTime for a memorable holiday call on a smartphone or laptop. Brace Yourself for Crazy Cancer Comments Patients and survivors can be subjected to stupid cancer comments at any time of the year. Well-meaning friends and relatives may take it to the next level during the holidays. When your distant aunt brings a gift basket of ‘cancer-curing’ treats for you, your first instinct may be to ask her why she isn’t sharing this with the experts at the Mayo Clinic. You will feel much better if you just thank her and move on (trust us on this). Even though your role might be limited compared to years past, the holiday season is vital to every cancer patient because it allows them to reconnect with what is important in their lives; their loved ones. Those social connections don’t just make us feel good; scientific research shows that they are vitally important to our health. There’s significant evidence that social support and feeling connected can keep us healthy in many ways, including improving cancer survival and overall mental health. The holiday season can be a wonderful opportunity to spend time with family and friends. If you find yourself stressed about the holidays or just want to connect with people who understand what you’re going through, check out our virtual Thursday night Thrivers MeetUp . We hope this magical season renews your spirit. Have a wonderful holiday!

Smile, though your heart is aching. Smile, even though it’s breaking. When there are clouds in the sky you’ll get by. If you smile through your fear and sorrow, smile and maybe tomorrow you’ll see the sun come shining through...” Music by Charles Chaplin, Lyrics by John Turner and Geoffrey Parsons. Last Thursday night our SurvivingBreastCancer.org our Thursday Night Thrivers virtual get together featured many beautiful, candid photographs of our attending community members. Interspersed with positive affirmations and members’ stories, these pictures invoked an insatiable desire to get through the darkest of tunnels and come out the other side. The omnipresent smiles and heartfelt emotions dominated the evening and left us uplifted. So it begets the following questions: how can you maintain a positive attitude and keep your head up and your heart open while fighting cancer? Is there power in positivity? And how much potential is there in a smile ? Let us start by acknowledging that you don't always have to be positive. Previously we have opined on allowing yourself to grieve and allowing time to vent your anger, frustration, and fears. Acknowledging your feelings and expressing oneself is critical. By doing so you can lessen the impact of Disenfranchised Grief and recognize that it is just as important as staying positive. Honor yourself. Surround Yourself with Positive Energy Just thinking of those positive friends, family members, and community should bring a smile to your face. When you are feeling the weight of the world on your shoulders, they bring a ray of sunshine and lighten your load. These supportive friend s are there to help support you when you need it, so don't back away. You may want to talk about those deepest fears. These friends inspire you to be courageous when you are feeling afraid (and we all are at some point) and that helps make difficult decisions and choices less daunting. [As much as possible avoid negative people, they are vexations to the spirit.] In addition to the positive people in your life, surround yourself with positive energy such as inspirational books, comedies, flowers and uplifting music - which can all help illuminate the way through the darkness. Similarly, positive affirmations - statements you repeat to reprogram your subconscious mind to visualize a situation in a more positive light - can be quite helpful. Nurture Yourself What makes you happy? What are you passionate about? Amidst the swirl of a medical diagnosis, second opinions, and active treatments, it is easy to forget that " You have a life ." Take the time to close your eyes and step back from the world of cancer - dream of things you would enjoy doing. Your thoughts may surprise you. If you are having difficulty picturing yourself feeling passionate about something think back over the past several years. What were the highlights? Where did they come from? What brought you the most joy ? Now think of things you have never done but at some point in your life have thought you would enjoy. Create a “Bucket List” and set off in pursuit of a new passion. After all, you have just gone through a tunnel. What brings you joy? Let us know at info@survivingbreastcancer.org

“Inspiration, move me brightly. Light the song with sense and color; Hold away despair, more than this I will not ask. Faced with mysteries dark and vast, statements just seem vain at last. Some rise, some fall, some climb, to get to....” --Jerome Garcia, Robert Hunter SurvivingBreastCancer.org founder and executive director Laura Carfang, myself, and best friend for life Braydon Germain recently experienced the most wondrous, inspirational vacation imaginable. Allow me to start this narrative at a point that seems so very long ago. Laura was diagnosed with breast cancer some 18+ months before this expedition @ the tender age of 34. Prior to that she and I (her most willing caregiver) would run up monthly to NH, from our base in Boston, MA to experience the wonder of the White Mountains. We would camp, hike, bicycle, swim, and marvel at the natural spectacle that surrounded us. Occasionally we would trek out to the Great Southwest to do the same at National Parks in Colorado, Utah, and Arizona. However, after she was diagnosed with breast cancer we were forced to scale back these activities to accommodate chemo infusions, surgery, more chemo, radiation, and finally, and most recently hormonal therapies and night sweats and more. Throughout her journey we would philosophically reminisce about how much we missed the enjoyment of participating in and getting back to nature. So we set a goal to once again head out to the wilderness to experience nature at her finest. We scheduled a date and place, July, 2018, Yosemite National Park, and invited our dear friend, Braydon Germain, to accompany us. Braydon, a young recording engineer in a famous LA studio, was up for the challenge. We informed him that our itinerary was to fly to LA, visit some old friends from NH who moved out that way (another cancer survivor), travel northeast 6 hours to Yosemite, explore for 8-10 days, then head over to San Francisco to finish up with a multi-day stay there before hosting a survivingbreastcancer.org meet and greet with our partners Driver.XYZ. If he so desired, we’d pick him up in LA and take him along for as much of the two-week vacation that he could tolerate. His response was “I’m in it for the entirety.” So off we went. Yosemite is right up there with some of the most must-see destinations in the world. It occupies John Muir’s “range of light” in the Sierras. It is a land of incredible diversity and features elevations that range from 2,000 to 13,000 feet above sea level. There are several groves of giant sequoias, the largest, and among the oldest living things on this beautiful earth. The magnificence of the mountains, valleys, rivers and lakes remind one of the Book of Genesis. El Capitan is beyond remarkable, Yosemite Falls is gigantic and the uniqueness of Half Dome is striking. Seeing all of this in person leaves you totally inspired. "I knew Yosemite was going to be spectacular, but nothing could have prepared me for the breadth of impactful moments it gave me. The scenery we experienced allowed me to tap into my childhood wonder, and the challenges I faced on my Half Dome hike unveiled deep layers of my subconscious mind. I will always look back at my time in Yosemite and how the Sierras turned my close friends into family." --Braydon Germain And it is exactly the experience of that inspiration that was so transformative. For 8 days we hiked, swam in the ice-cold Merced and Tuolumne Rivers, dove into Cathedral Lakes, camped along the rivers and cooked 4 star meals, including freshly caught brook trout, over a raging, hot fire. “Only by going alone in silence, without baggage, can one truly get into the heart of the wilderness. All other travel is mere dust and hotels and baggage and chatter.” –John Muir It was as if the Three Musketeers came to life in one of the most remarkable parks known to mankind. After dinner we’d clean up and then sit by the fire, waxing philosophic about life, music, literature, etc. The discussions were lively, entertaining and even businesslike on occasion. Of course, the focus would turn to survivingbreastcancer.org and how to build up the non-profit to be able to positively impact as many survivors and caregivers lives as possible. Following our stay at Yosemite we drove through California’s fertile plains and navigated our way to the picturesque Big Sur. This fantastic and rugged stretch of California coastline is stunning and reminds one of the Beats authors Kerouac and Brautigan coming to terms with life’s demons by confronting their internal struggles, ghosts and various states of consciousness. Through our time together we had this feeling of being in the presence of something vast or beyond human scale. Meditating on the beach, sleeping under the stars, hiking along the coast, diving into the icy Pacific, our togetherness transcended our current understanding of things. This truly electrifying experience, positively impacted our lives in measurable ways. It taught us to live in the moment. It inspired us to be better; To delve into our consciousness; To strive for excellence; To be at peace with who and what we are. The impact of experiencing such inspiration has vast potential to lift one’s spirits, improve health, and assist you with your developing mindfulness. Intentionally pursuing it will change your life for the better. Use the power of positivity to solidify your place in the world. “Ere dawn had kissed the level valley floor / He climbed to summits through the sleeping wood / By the inerrant guide of forest lore, / And found companionship in solitude / He feared no beast and by no beast was feared / And none was startled when his shape appeared.” -- Excerpted from the poem, “With Muir in Yosemite,” Robert Underwood Johnson